Glory Baby

2nd Annual IWK 5K - In Memory of Jessica

2011-05-26T21:46:00.000-03:00

As William Arthur Ward once said: "Feeling gratitude and not expressing it is like wrapping a present and not giving it."

The IWK 5K - In Memory of Jessica is my way of expressing gratitude for the kindness and love we received from the staff at the IWK 3 years ago. As I walked through the halls today putting posters up for this year's event, I stopped in the Ronald McDonald family room. I remember too easily what it felt like sitting there worried every day.  Worried and stressed hoping my babies were going to be ok.   All I could really do is HOPE and pray that someone above was taking care of them, and that someone inside the NICU would fix all of their problems and that they would get through another day without to many downs, hoping I could hold them that day, and hoping that I could take them home with me someday...Someday never comes.

Although I would have preferred to be anywhere then the NICU at the time...I also can't imagine being cared for anywhere else. The care we received at the IWK...I will remember for the rest of my life.  Our primary nurses touched our hearts, and I will ALWAYS be grateful for them for loving my girls like their own, and supporting us along the way.

I truly believe that it takes someone really special to work at this hospital. The staff go above and beyond their duties to be there for the patients and their families... And I am so grateful that this hospital is in my city.
"The IWK Health Centre Foundation exists to ensure patients receive excellent care, both inside the IWK and in their home communities, by funding the equipment, programs, and people that government does not."

The IWK 5K - In Memory of Jessica means SO much to me, for so many reasons.   This event lets me be open about losing my daughter. Jessica passed away June 12, 2008, and every year around this time, I feel the ache, the hole...and always requestion whether or not we gave up too soon. Whether or not we made the right decision. But this event helps. Running also helps, so it helps me to see other people get as much enjoyment out of running as I do. It helps to be busy, it helps to do something for someone else. And it helps to have so many family and friends support the event. Although every year I hope to recruit more people who have a connection to the hospital...I must say, last year it was such an overwhelming amazing feeling to look out towards the hundred participants, and know almost every one of them.    Last year we raised $4300 thanks to everyone who took part, and I'm hoping for even more this year.

The IWK is a highly specialized Maritime hospital for children, women and youth. 3 years ago, I never thought we would need this hospital as much as we did. You never know, when you or someone you know may need the IWK services.

Please come run or walk with us, June 5th, 2011 at DeWolfe Park in Bedford, NS, and feel good about yourself for exercising, and feel great that you are helping to make a child's experience at the IWK more comfortable and less invasive by helping to provide the best medical care, and helping to purchase necessary equipment that the government doesn't fund.

All proceeds after race cost (which are very minimal thanks to our sponsors), will be given to the IWK. So if you give every year anyways, come join us and have some fun by taking part in the event, or if you are away and would like to donate, please follow the attached link: https://www.giving.runningroom.com/hm/index.php?sub=3&charity=271&id=A2BSYVU3VTY%3D&enuserId=UjBQYgNgVTpSPFFj&item=8

The direct link for registration is here: http://www.events.runningroom.com/site/?raceId=6485

Every donation makes a difference, please help support this year's IWK 5K - In Memory of Jessica.

"With you, Anything is Possible" - IWK Health Centre Foundation Motto

Special thanks to this year's sponsors: Coconut Creek, The Medicine Shop, Quad Graphics, Oaklawn Farm Zoo, Serenity Spa, Brewdebaker's, Swiss Chalet, Jack Astor's, Aplaydia, Subway, Atlantic Superstore, Irving, Worr Construction, Kent Building Supplies, The Great Canadian Bagel, Daisy Doo's hairclips, Home Hardware.

confessions of a runner mom

2011-04-12T19:41:00.004-03:00

I am an adrenaline junkie. I thought it was running, and I think it mostly is, but after getting back into spin class...listening to blaring music, like Sandstorm by Darube and Rob Zombie, listening to the instructor yelling out instructions for the next drill, as sweat is running down my entire body, and my breathing is heavy and I'm feeling a little dizzy....HOTT I know, I wonder if it is the actual running or the adrenaline from a great high intensity workout.

Running makes me a better person. it makes me a better mom, which means I haven't been such a great mom lately. I feel very snappy and annoyed, and then feel bad for being so impatient. I'm whining one day to Emily...and she says "Mommy what's wrong", and I tell her my leg hurts, so she goes on to tell me "so don't run Mommy if you're leg hurts" ...genius 4 year old, makes sense, but somehow I have to decide if the feeling I get from running, the way it clears my head and acts as Prozac overweighs the pain I get in my leg. So then I tell Emily that I LOVE to run and it makes me feel so great....and how does she answer..." well wait until your leg is better Mommy, and then you can run." Wow. Coming from a 4 1/2 year old life in perspective.

It's been about 4 weeks since I've injured my leg, with at least 2 full weeks of resting and 2 weeks of "trying" to run on it medicated. Not the smartest thing I know, but I desperately needed to get out for a run, for myself and for everyone around me. The frustrating part is that I still don't know what is wrong with my leg. Is it a stress fracture, is it tendinitous, or compartmental syndrome? I've been to physiotherapy, and massage therapy, had an xray (which I heard rarely shows a stress fracture), and have been doing all of my exercises recommended. Trust me, I am the good client who does everything I am told if that means I can be out running sooner. And I am also not someone to stop for just a little bit of pain or soreness, I'm not a wimp physically (only emotionally my sister in law would say;) and I'd say I have a pretty high pain tolerance, but when I start to limp and start compensating, by changing my gait, I know I need to stop. I want to run every other day for the rest of my life, not everyday for only 1 year.

I am suppose to run a marathon on my birthday, May 8th. I was really looking forward to this. Non runners think I'm ridiculous to want to run 42.2K on my birthday, but I think it would be very cool and would love to run with my family cheering me along the course, go out for a huge mother's day brunch, spend the afternoon with my family and go out for drinks to celebrate that night. AWESOME. But it's not looking so good right now. How much time can you really take off from the training....and still run the marathon? I've ran my longest run, 32K a couple weeks ago when I was on Advil, and it was a great run, but I was feeling it the next couple days afterwards. I see my doctor on Wednesday and hopefully I'll get in for a bone scan shortly after that. I guess that will be my decision maker...if it is a stress fracture. 6-8 weeks to heal...2 already over with. Boo.

For now, I will stick with sweating it out in spin class and Jillian Michaels yoga meltdown...and try to get my eating back down to a normal person's intake and not a marathon trainer's appetite. Which is much harder then I thought it would be. I thought once I stopped running so much, that I would be less hungry, well I am...but I think I am eating to fill the void.

Sunday was my second spin class...probably shouldn't have done two in a row when I just started because my butt from the seat was still sore from the Saturday's workout. Otherwise, another fantastic workout. For anyone who has been wanting to try it, I say go for it! Today's instructor was even better, she made me feel awesome because she kept telling us how awesome we were, and was constantly correcting our form and getting us to engage our core, drop our shoulders down, stick your butt out...and PUSH it as hard as we could. Spin class really is YOUR ride, you make it as hard or easy as you want, you put as much or little into it. I GIVer...of course. I'm half interested in trying a triathlon someday. maybe a sprint triathlon to start as I haven't swam laps in years.

So to all of you folks lazin' around on your couch watching TV or playing on the computer, procrastinating about getting out for some exercise, get off your butts and go for a run if you can...because someone (like me) is just dying to get out in this beautiful weather and run...You'll thank me when you're done:)

For the Love of Running

2011-02-06T21:47:00.099-04:00

My first goal was a 10K race, the HBC run in 2007. I wanted to run it under an hour, but more importantly I wanted to lose the baby weight after Emily. I loved the training. I remember getting up early mornings in the summer taking my ipod and heading out for my run along the Bedford Hwy. Nothing felt more refreshing then a nice long run (little did I know at the time that a long run was not a 10K, but more like a 32K). Then the excitement of race day came, hundreds of people in red tshirts at the Halifax Commons, all happy, excited, nervous to get out and run to support our Canadian Athletes. The music was energizing, the warm up was fun and the participation was fabulous... Friendly volunteers were everywhere, and me and my bro were ready to go. I was excited the entire race, this was the first time I felt my adrenaline take off, and it increased even more around the 8K mark where you heard the bagpipes...how cool is that? Then that amazing feeling of crossing the finish line after completing my first race with my brother by my side (he could have totally kicked my butt, but was kind enough to stick with me for the run). First time crossing the finish line feels SO big. It was 10K, but to me at the time it felt like a marathon.

HBC 10K 2007

There is something very addictive about running. Once you start, you don't want to stop. It makes you feel THAT good. And so the addiction began. Sunday morning runs became the routine. Sunday mornings are MY time. Some people run for health benefits, the mental benefits, the social benefits... I run for it all.
After running another 10K, I signed up for a Half Marathon in the Valley and started my own training. Running through the finish line for my first Half Marathon was awesome, and for someone who has never ran a full marathon at the time, I felt like I had.

Valley Half Marathon 2007

Shortly after this run I became pregnant again. I continued running for the fitness for shorter runs up until March 2008. I found out I was pregnant with twin girls and had a very high risk pregnancy with Twin twin transfusion syndrome and needed a cerclage to hold the babies in and then bedrest. My running was over. Although the excitement of twins was really better then my running high, until it just became too stressful, and I wished I had something to relax me.

Once the girls were born, I didn't have time for running, I barely had time for Emily. My day and night was spent in the NICU. Being busy kepted me focused on what I wanted to focus on, bringing my twin girls home. So I managed ok...until our life completely changed. One Sunday, Keith and I were trying to figure out how we were going to arrange the cribs, and about life home with all 3 girls...and then Monday we find out we will never have 3 girls at home. How does that happen so fast? How can you have your life planned out right in front of you, your family of 5 that you always wanted, twin girls you've always wanted...and then within seconds taken away? Or the better question, how to move on after losing your baby?

Everyone's different, everyone copes differently. I went to bereavement classes at the IWK for several months after Jessica passed away, I was still busy going to the hospital everyday for another 2 1/2 months, until Alyssa was discharged home, and I wrote on this blog. The counselling helped, but once Alyssa was home, I felt lost again. She was home, and I wasn't as busy as I was when travelling to the hospital daily. I had too much time to think, and too much time to be depressed. So somewhere along the way, I got back into running, and I think it kind of saved me.

I ran one race that summer with my Dad, the Bedford 5K to Beat Lung Cancer. I picked this race because it was in Bedford, but also because the director had a good story, and passion for organizing the event, which means alot to me when choosing a fun run. This was my Dad's first 5K run, he did awesome. I'm not sure when exactly he started running that year or why...maybe I was making him crazy with my stress and he found running just as good for the head as I did, either way, he continued on. And has since ran 3 half marathon races, with his 4th coming up this weekend, and trained for at least 2 others. And I am SO proud of my Dad for sticking with the running, even after injuries... and loving it (although he jokingly says how much he loves the social aspect and the feeling afterwards, it's just the running part he doesn't like, funny.) I'm sure if he didn't enjoy it as much as all of us runners do, he wouldn't be out every Sunday morning, rain, or shine running for 1-2hours. It makes me excited to see other people get excited about running, especially my family and friends.

Bedford 5K to |Beat Lung Cancer 2008

That fall, I started running more. Days I could run on the treadmill, and evenings and weekends outside, nothing big, just small runs to get me started, to help with the depression and feelings of self pity. The best way for me to keep busy, was to sign up for races and then train. So I did. I ran a half marathon in Fredericton one year from when the girls were born, then ran the Bluenose 10K a couple weeks later, then started training for another half for the fall in the Valley, then as soon as that was done, trained for another half, then another, then took the ultimate plunge and started training for a full marathon. The feelings and emotions and physical training that goes into a full marathon deserves a post of it's own. Lets just say, I've never felt more proud of myself, and for that brief moment crossing the finish line, there wasn't anything that I couldn't do, because I felt on top of the world. That amazing feeling, whether it's from a 5K or a full Marathon...I hope everyone I love can feel that someday.

Valley Harvest Full Marathon 10-10-10

Fredericton Half Marathon 2009

Shortly after that finished, my running slowed down a bit and I could feel myself dragging, and feeling "blah" so I started training for the half marathon that I ran today. And one day while in the IWK, I started thinking about organizing my own event, something to help remember Jessica, something that would mean alot to me...and keep me busy, hence "The IWK 5K - In Memory of Jessica". So now I can't stop, or maybe I just don't want to stop. I'm actually afraid to stop. I'm scared that I will become that person I was over 2 years ago, the one I didn't recognize, the one that I couldn't control emotionally, mentally, socially. I LOVE to run, I love talking about running, I love seeing other people run, and sharing the same love for it that I do...but as much as I love it, and love planning for my event...I think I need it as much as I love it, and I'm ok with that :)

Navy 10K 2007

Santa Shuffle 5K 2008

Santa Shuffle 5K 2009

IWK 5K - In Memory of Jessica, cheque presentation at the IWK Telethon 2010

Hypothermic Half Marathon 2010

Resolution 5K 2010

Jenn's rant # ?

2010-09-17T23:42:00.005-03:00

4 tiny hands covered with tape for their IV's... 4 tiny feet with one blue great toe. In the first 24 hours I didn't worry about Jessica living, I worried about her losing her toes.

Born into very warm arms and many loving hearts. I was truly happy and understood what it meant to feel gratitude.
Our family was complete, or so I thought at the time.

Then one month later I realized my family would never feel complete. And gratitude changed to despair, I knew Keith nor I would ever hold our twin girls together again.

That despair is still being managed, but the gratitude has returned and will always be with me.

Alyssa is TWO...she is incredible and she makes me smile everyday. She talks, she walks, she sings (very poorly like all Flynn's do), and you would never know how sick she once was by simply looking at her.

In the past year she's grown up so much. I think we all have. Maybe myself the most. Although I still can be an emotional wreck, I feel like I can handle alot. And very little unrelated to my family bothers me. Work does not stress me out, money does not stress me out, a messy house without supper made bothers me, but does not stress me out, trying to achieve a specific goal race time does not stress me out. But my kids being sick stresses me out. Give this one to me.

Here's my rant for the year (the edited version)

Alyssa's first year home, she was well protected from colds, extremely careful hand washing and mask wearing as necessary. She also received RSV shots during that year. The second year I was back to work and she was at a home sitter, so exposed to more virus's of course. Three colds that developped into pneumonia, and one that hospitalized her for half a week because of RSV and pneumonia. Some friends use to say that I shouldn't have isolated her so much her first year, so that her body will become more immune to these viruses. I can understand this, but I think very differently at the same time. They never really got it that her lungs are damaged, and the older she gets they will continue to develop making her less succeptible to getting SO sick. I don't want to build up her immune system before her lungs can really handle it. So will I continue to shelter her...no, not like the first year, but I will still avoid any colds for playdates when possible. We are now starting back into cold/RSV season, and I am a bit stressed out. Alyssa has a cold now, I'm sure many people thought I overeacted when I took her to the paediatrician because I thought she was getting pneumonia again. I hate worrying about a cold, but it started as a simple cold last March that had her admitted into the hospital with RSV and pneumonia. I really don't care what people think. And I certaintly don't minimize anyone else's worry when it comes to their children, I hear this worry never ends...

And if it is not colds, then it is something else...

Several months ago, Alyssa started this new thing. They call it "breath holding". It scared the living shit out of me the first time it happened...Alyssa started crying over something silly, like Emily took her toy...she couldn't catch her breath...she turned blue....I tried flicking her toes, blowing in her face, everything we did when she had apneas in the NICU, but nothing worked, she passed out in my arms. This all happened in minutes and within 10 seconds or so later she came to. But in that time a million things went through my head...I thought about calling 911... I thought about starting CPR...I thought, I lost her.

I never told anyone that, not even Keith at the time. This happened 3 other times since then, and even though I've done my research, talked with her pediatrician who said this happens in some kids with no resulting damage...I still hate it, and I feel my heart stop for a second.

Any major skin color changes...especially blue, loss of consciousness, and/or extreme difficulty in breathing, terrifies me. And and I know logically that not everyone that turns blue and stops breathing for a couple seconds will die, I really do...but at that moment I feel despair all over again, and wonder if I'll ever be free of the fear of losing another child.

IWK 5K - In Memory of Jessica

2010-04-16T15:40:00.012-03:00

New York, New York, not in my cards this year, however it will in the next 2 years, so I will just keep applying...

Instead I found a new focus this year. I am organizing a fun run/walk for the IWK on June 6th in DeWolfe Park, in Bedford, NS.

I remember the first time holding Jessica outside of incubator for kangaroo care thinking, WOW... these nurses really are amazing. Here they are looking after 2-3 babies each, depending on how sick they were, and they find this huge comfy chair for me to sit on, and find another nurse who is also looking after their own patients to help organize the lines and ventilator tubing to take my baby out for me to hold. There is careful placing of each line, and warmed blankets, and tape, lots of tape to hold the ventilator tubing on the chair from falling off, and a mirror so that I can look at Jessica's face. Then they prop my feet up on the foot rest, and put pillows around me to make sure I am comfortable, because I am scared to death to move in fear of pulling out a line or the tube. And not once did they show any fear, or concern as the alarms went off and the monitors were showing heart rate increasing, and sats decreasing...they told us that kangaroo care was so important for the babies, especially with the mom, and although the transition from incubator to the Mom can be stressful for the baby, being settled on Mom's chest usually settles everything. And they were right. Heart rate usually settled right out, and oxygen sats increased, so much to the point that the oxygen settings could be lowered. It was an amazing feeling, with both girls to see the response that I had on them. I loved the nurses for making me feel this way, and helping me relax with kangaroo care, when it was something so new to me, even though they did this with parents everyday.

And it didn't end there from the kindness and compassion we received from the nurses. They looked after our children, and they looked after us when we really needed it after Jessica passed away. The nurses, the social worker, the neonatologists, the pharmacists, the respiratory therapists, the chaplains, they were all wonderful. It takes someone truly remarkable to be a part of the IWK team. It was around this time that I thought about organizing an event to help raise money for the IWK, rather then our yearly or bi-yearly cheque.

Running and writing...my two safe outlets after Jessica passed away. So it only made perfect sense to me to start up a run with all proceeds after costs of the race to be donated to the IWK. For me, I am organizing the run in memory of my daughter, Jessica, and for the excellent care we received for Alyssa and also Emily when she was born.

This run can mean something to everyone. It can mean something to the mom who had a normal healthy pregnancy and delivered a healthy baby at the IWK and feels grateful to the staff who delivered and cared for her. It can mean something to the Mom and Dad, who delivered premature twins, who spent a lengthy stay in the NICU with many complications, but because of the wonderful care they received...were able to take their twins home. And continue to be involved with the IWK staff with perinatal follow-up/and or surgeries. It can mean something to the the parents of a child who was born with their bowels on their exterior and who are grateful for the staff and many surgeries that saved their babies life. It can mean something to the families who's child was in grade primary and diagnosed with leukemia, and now has to undergo extensive chemotherapy and radiation at such a young age, but because of the IWK staff this child feels at home. It can mean something for the children who at one time thought they would never walk, and today they are running. And it can mean something to all of the healthy kids who know that if they were to ever become sick they would be ok, because they live in a province with "world class pediatric care." We all have some connection to this hospital either directly or through family and friends. What is your connection?

Please come run with us, and feel good about yourself for exercising, and feel great that you are helping to make a child's experience at the IWK more comfortable and less invasive by helping to provide the best medical care, and helping to purchase necessary equipment that the government doesn't fund.

The cost of the 5K run is $25 dollars, free for the kids run with the registration of one adult. If you like to take part without running or walking, we would love your help as a volunteer, or sponsor. This is the first year for the race so we are trying to keep it very low key with few costs so that more money will go to the IWK. Tell your family, your friends, your coworkers, we hope to see many of you at DeWolfe Park June 6th for a great run or walk!

To register click on the title of this blog post or go to www.runningroom.com and look under NS races in June 2010.

Marathon Year

2010-01-30T21:26:00.005-04:00

For the past year and a half, I've had this constant nagging thought in my head. "I have to run a full marathon". Crazy, I know. Like I've said in post's before...I am not a natural runner, I work my butt off to run, sort of. But I love it. I loved it since 2007 when I ran my first 10K, and then went on to run my first half marathon...and then I got pregnant...with twins...and was put on bedrest...dang. It stopped, and I envied those people running on the Bedford highway as I drove to all my appt's with my OB. Yes, I know, all stuff I've mentioned before. So now here I am again, and back into the running. After running my first half marathon, I didn't think "I so want to run a full marathon". On the contrary...I thought why the hell would anyone want to run over 4 hours, I mean really, why??? 2 hours is a good enough workout, really 1 hours is sufficient, but 4hours, not me, I don't have the desire. It is not on my bucket list.

Well, not until my baby died.

And then something inside of me made me want to do it. silly, crazy, stupid, all of the above. you become someone you are not. You're life changes. things you thought you never would do, you want to do, and for me it is that 42 K course. Not that I think I necessarily CAN do it, I feel like I HAVE to do it. WhY?? I have no clue. But that is where I am. And for some reason, it has to be NEW YORK... again, I have no idea why. New York was on my mind right after Jessica passed away. this marathon is by lottery, you hope you get in, but it is pure luck of the draw. When my sister in law ran it years ago, the competition wasn't as bad and her and a couple of her best friends all got in, so in my mind I felt i would get in last year too. And it was actually a huge dissapointment that I didn't get in. I cried for days. Not just because I didn't get in, but because I felt like I let myself down, or that I let Jessica down...crazy I know. Crazy is just what parents of spirit babies are sometimes. People tell me all the time how lucky I am that Alyssa is doing so well, and I'm too nice to tell them what I really want to say. "Yes, I'm grateful, and absolutely thrilled that Alyssa and Emily are healthy and doing so well...but lucky? I wouldn't say I'm lucky, I held my baby in my arms and watched her die and turn blue, I couldn't do anything to fix all of her problems...is that luck to you, because it's not luck to me. I think it is only fair that my baby that did survive is doing well" there you go, I said it.

Ok, back to this marathon thing. So I've applied again this year. I can't get this big run out of my head. Normally...after a half marathon training, or during, I have some type of major injury, this time I didn't really train...meaning I didn't do the hills or speed, just casually ran through the week and did long runs on Sunday, and felt great, no injuries until this past week, where my knee felt like it was going to give out a couple days after the 20 K...but I think I'm recovering. So anyways in my mind, I'm thinking if I'm feeling ok, I should just continue to increase my mileage, and this will be the year....New york or not, this is my marathon year. I'm still a bit hesitant writing this and trying to commit to it, because I don't want to fail.
But I seriously cannot get the marathon out of my head. So whether it is NY (which I REALLY REALLY hope it is), or Toronto, or somewhere else...hopefully my knees will let me finish a full 26.2 miles this year. I will be 32 the year I run my first marathon, not a very important year for age, but crazy important year for accomplishment. Wish me luck, I think I've finally committed.

2010-01-27T20:28:00.006-04:00

I really miss maternity leave. Or at least wish I was young enough to retire (or rich enough). I miss the no rush, laid back, disorganized lifestyle I had months ago.

Work does have it's perks... I enjoy my hour at lunch without someone crying, or wanting to be held, or without having to help feed or me trying to convince my 3 year old how yummy her lunch is and how it will make her big enough so that she will be able to go on the rides at DisneyWorld...yes, I enjoy being able to go for a run and not feeling guilty that the kids are home waiting for me so I need to rush back. And a staff room full of women with some good gossip and entertaining conversation, and stories of kids similar in age to mine that make me feel like I'm not alone with parenting.

However... I hate early morning rushes...5 minute showers, quick brush of the teeth, my usual ponytail hair non brushed of course, waking up sleepy children and dressing them as they are just starting to open their eyes and then telling them to eat their breakfast as quick as they can....oh and don't poop whatever you do because we'll never make it in time for carpool!! On a good day I can scarf down a bowl of cereal, and if I'm really lucky grab a cup of coffee (thank goodness for the 1 cup Keurig). And then there is the supper rush which I do alone and am not enjoying so much either. I pick the girls up from the sitter's, Alyssa is absolutely starving and wanting supper ASAP, therefore supper for that night must be cooked the night before so it only needs to be heated up as I walk through the door....I feel like I am always rushing, and for someone as laid back as I am, or so I thought I was, life seems unecessarily stressful at times. Does it ever get any easier, or will I need to always be this organized with meal planning and cleaning...wait a second, No, that is for the housekeeper...who I don't absolutely love, but she does more then I will do weekly. or will she? there is still the constant never ending laundry, breakfast/suppertime dishes and cleaning up toys that is only some of the typical daily chores. The actual work day itself is usually great...until someone tells you how to do your job that is, which luckily doesn't happen that often....
it's just the rushing, I would like to slow down again to maternity style tempo. I wasn't lazy, just relaxed.

How I wish I could sleep in tomorrow with my husband, drink my coffee, go for a run, play with my kids... and still get paid.

Back to life, back to reality

2009-09-12T09:08:00.009-03:00

Back to work this past week after being off for 17 months. Craziness. It was such a wierd feeling to go back, especially after completely exposing myself on this blog, and knowing that many people I worked with read it occasionally. But yet, here I am again. I thought I was done with this blogging stuff, but it has been awhile since I've updated Alyssa's development...and well the ICU setting this week had me looking back in Alyssa's "diary" and remembering all too well the sounds of the so familiar alarms and chaos of an intensive care unit.

I've had anxiety for the past two weeks thinking about returning to a floor that has such a different meaning to me now. I've had 2 weeks of sleepless nights thinking about the first time I am going to see someone on long term ventilation, or on nitric oxide, or an osscilator...oh ya, never mind, that is for little people, not big people, or completely full of pumps for meds, or paralyzed and full of edema, or even worse yet...coding. As scary as these things may sound to someone who doesn't work in the hospital, when this setting is a part of your job, you become sort of accustom to these kind of things. I work on a cardiac surgery floor, people will be sick, people will die, but more people will be fine. So my first week back, I open the door to the ICU and of course one of the first things I see is the big cylinders of nitric oxide...ugh...this friggin sucks, can I go home? No. Get over it, this is my job. It's not the same thing. And it's not, well not completely, and really besides a little anxiety which I am really good at covering up, one little meltdown talking to a really sweet nurse in the ICU, and meeting a patient's wife who coincidentally started telling me about twins they had lost years ago....the week was ok and no harder then I thought it would be.

I came home after the week and grabbed Alyssa's little diary that I wrote in when she was in the hospital and flipped it to May 28th..."Things have quickly changed in 48hours...we had two scary calls, the first on Monday to let us know they were going to do a spinal tap to rule out meningitis and the second call to let us know they were putting you on nitric oxide to help increase the pressure...you are on 70% O2, your right lung has collapsed and your color has changed to a grayish...yes I am worried, but you will pull through, you have too, because I can't imagine losing you or Jessica. Also your HR has been close to 200bpm, which is rather frightening. You have pneumonia and have become septic. Tuesday we got another call saying things have become worse, an air leak noticed on x-ray, O2 increased to 100%, so you were put on an oscillator which causes your entire body to shake, and you were given a "paralyzer" medication to keep you still...breathing like a hummingbird. Dr J looked worried in rounds today, she had watery eyes when she told us you were really sick, but she told us we weren't at the point to discontinue treatment yet. We believe you are strong and are going to make it through this, keep fighting and get better soon so we can all go home together. We love you so much, Mommy"

Why do I do this to myself and go back to remembering when Alyssa was at her sickest, when she is sitting here right beside me, healthy and happy. Damn nitric oxide. Next week will be better.

In the past month, most of my worries about Alyssa's development have gone away. I was seriously worried that she would never crawl, and never walk. She seemed "floppy" to me, or low tone, and she tried so hard to get on all 4's but would always flop to her belly. I worked with her, and did everything physio told me to do, but nothing appeared to be helping...I thought for sure she had some form of cerebral palsy. But then one day, in Nfld actually, she decided she was ready and shocked us all....and she hasn't stopped since. She crawls, she pulls herself up, and she's sort of taking steps holding on to our hands, and almost starting to cruise...it happened so fast....our little girl is growing up, and developing at her own pace. So she's still a couple months behind her "corrected age (CA)" (5th percentile), and probably won't catch up to her actual age by the time she reaches 2...in the big picture, no big deal, she's out of the NICU, and she's on the move. She weighs 18 1/2 pounds (5th percentile for CA) and eats more then Emily does. She had a real shitty start to life, but look at her now.

So there you go, back to work, and the chaos of early morning routines and trying to get suppers organized the night before, back to the real world that I so easily forgot about.

Climb to inner peace

2009-06-12T09:48:00.012-03:00

(I started writing this June 12 but wasn't able to finish until today June 16th. We had some time to grieve Friday morning, but then we were so busy packing and getting ready to go away for the weekend. We needed to get away, so we went to Oak Island Resort, and had a really great family getaway, I think we will do this every year. We received your messages, your cards, your donations made on Jessica's behalf, and your flowers, thank you for being such great friends and a wonderful family.)

A year ago today... while most of you were sleeping, we were in a parent room at the hospital saying goodbye. Goodbye to our youngest child who was known as "Twin B Manuel", Phoebe, and of course Jessica Elizabeth.

One of the biggest struggles I continue to have with this experience is trying to understand why it was our baby that died. After I delivered the girls, I had so many people trying to reassure me that everything would be OK, and I believed them. Because their friends friends, or nephew, or grandmother were all born at 25 weeks, and barely weighed 2 lbs, and look at them now, healthy active happy kids or adults. And of course I had girls, and girls do so much better then boys do. Do they? I met 3 women at the IWK who all had twin boys, and although some of them may have their struggles...they survived. And look at the 91 year old walking around the hospital...he weighed 1 lb 8oz when he was born... years ago when they didn't have the technology they do today, and he was kept in a shoebox. This is what tears me apart, focusing on what we'll never know and remembering how hard it was to let her go a year ago today. I can normally block this out, but days like today, I can't help but ask myself why? once again. Days like today, makes me think of what should have been but what wasn't. Days like today remind me of how much I really hurt, even when I feel fine. Days like today I stop worrying that Alyssa isn't crawling or pulling herself up, I'm grateful she's alive. Days like today I stare a little bit longer at Alyssa and imagine Jessica. Days like today I hug my girls a little big tighter and a little bit longer. Days like today I want to hide under a rock. And days like today....I remember what it was like to hold my baby as she passed away in my arms.

....

The beginning of the day is rather blurry to me. But I do remember stuggling to try and get the words out at our family meeting..."we made our decision, we will let her go" But of course they didn't come out as clear as that...My whole body was shaking, I was shivering, and crying and feeling like "No, we want more time, we haven't made our decision, we're only saying what we feel we HAVE to say" But I didn't, deep down, I knew. My head knew, but my heart will never know.

We spent the afternoon in the NICU with the girls, my parents and Tammy and Randy. Keith and I took turns. He would hold Jessica, and then I would hold her. He held both girls together and then I did. Keith and I were the only two family members to hold Jessica, which is also something I struggle with. When they were both so sick in the NICU, kangaroo care was reserved for the parents because there weren't many opportunities in the beginning to hold the girls. At the time, I just wanted her for us, I didn't want to share her with anyone because we had such little time with her. I wasn't thinking about anyone else at the time, I wasn't thinking that maybe Mom or Dad would have liked to hold their granddaughter, or maybe Tammy and Randy would have liked to hold their goddaughter rather then just touching her. Maybe Jessica would have liked this too. But I was too selfish to allow this. Shortly after Alyssa was placed back in her incubator, Jessica was wheeled into our parent room...Seeing her in our room was incredibly sad, because we knew what was to come. Jamie, Danielle and Molly were there to say goodbye to their niece and cousin, and Emily was there to say goodbye to her sister. She wanted to touch her. She kept trying to hug her and kiss her, we taped her interaction with her sister to show her that she met her. We never had the chance to take a family picture, which I regret.

I remember Mom asking me many times if we wanted her to stay with us, to help us go through with everything, but I said no...at the time, I felt it was something that Keith and I needed to do alone. Part of me regrets this, but then the other half of me thinks we made the right decision. After talking with many other babylost mama's, I realize that many of them had the entire room filled with family and friends, each having the chance to hold the baby after they passed away. For us, we didn't want that. It was so hard for us. I didn't want my parents to see our baby dying, and also seeing how much pain we were in. I didn't want anyone else to have the images of Jessica that I have stuck in my head. I wanted my family to remember her alive, and remember her looking like a perfect little baby.

To most of you, the pictures I posted on here or on facebook may be difficult to see because of all the lines and tubes and how sick she looked. But to me, when I look at those pictures, none of that bothers me, I see her tiny little eyes peeking up at me as we do kangaroo care, I see her little toes and fingers wiggling around and grabbing at my finger, I see more then the equipment. It is not these pictures that bother me, it is the images I can't get out of my head from our last day with Jessica.

I remember laying on the bed with Jessica on my chest. I felt so sick and so tired but didn't want to move because I didn't want to lose a second. For once we no longer heard the beeping of the COT study, it was a little too quiet. Her ventilator was still on and she was still receiving Fentanyl for pain, but that was it, nothing for us to see how she was doing. But I guess it didnt' matter any more because soon she would be gone. I tried explaining to her why this was happening, and telling her how much we loved her and how much we were going to miss her, but nothing sounded right to me. What do you tell your child when you know that you will be calling a nurse shortly to come and pull out the tube that is keeping her alive? there is nothing that sounds right. As we layed there, I kept worrying about her pain, was she having any? I couldn't tell, she was so calm laying on top of me, she looked so comfortable and peaceful. So I left her there for a very long time...I purposely waited until past midnight, because I wanted her to have a full month of life, not a month minus a day. Keith and I struggled on when to call the nurse. She came when we asked, and was so gentle removing the tube. I have a lot of respect for the nurse who was working this shift. She was good to us, she came when we needed her, but also gave us privacy when we needed it. She was comforting, and knew what we needed. She was clearly upset and crying with us, which made us feel like she really cared, and she wasn't just doing her job. She became involved and that meant alot to us. As wonderful as she was...I never wanted to see her again, and thankfully it was a long time before we did see her, and it was never looking after Alyssa.

....

Jessica never appeared to be in any pain. The ventilator noise was off, the room was quiet other then our sobbing. It was the worst experience in my life. And I can still feel the same pain today thinking about it, that I did that day. Her heart was still beating for many hours after the tube was pulled out. When she finally passed away, we could feel the change in temperature, we could see the change in her colour, but she still looked like Jessica. When we decided it was time to give her to the nurse, she asked us if we wanted to help bath her. And I just couldn't. I couldn't help bathe her seeing how lifeless she now was. I didn't want to have this memory of her. So I never bathed her. Once she was bathed, and dressed up, and wrapped in a blanket, we held her for the last time and said our goodbyes. She no longer looked like Jessica to me, and THIS memory is what I can never forget. This is what I didn't want anyone else to see.

Our life has continued to go on. I like my life, I love my husband, I love my girls, I love my family and friends, but YES I am still having a hard time because I also loved my other daughter, Jessica, and I have memories of her that absolutely break my heart. My faith is definetly shaken. This is what I struggle with, this is my mountain to climb...
the climb to inner peace.

Finishing up a year of Firsts

2009-06-05T09:53:00.011-03:00

I'm not a regular blogger. Throughout the year, I blogged when I needed to rant, or update, or just pour out my heart. Instead I read other people's blogs.
There is this place where I hang out once in a while. It's a place where I feel I can be myself, even if I'm just there being quiet and not participating. I sit, and read, and cry and nod my head in complete agreement, and think "how do you know exactly how I am feeling?". Well that's easy, because most of the other "friends" at this place, have been through the horror of losing a child. Where is this place where I can be honest and grieve and not be afraid who is judging me??? It's a website called glowinthewoods.com and it has probably been the best therapy to me all year. The women who started the group are real writers, they are good, amazing writers, and every post is so well written that I leave there amazed at how well they can affect people. Often there is a story behind every post and it all leads up to a question at the end. Questions that always make you think, because it is something I've thought about at one point this year. It may even be something that I already wrote about in the past, and then I see it again. I rarely post my replies on the website, but today I decided to sift through some of the questions that I thought I would like to answer, and post them here for you today and in the next couple of days. So here is my first rather lengthy reply to a question I thought appropriate as we approach the anniversary of Jessica's death.

Did you perform a ceremony to remember and honour your child? What was your favorite part of that terrible day? What prayer or poem or song lyrics did you use in the ceremony? What changed for you before and after that day if anything?

As some of you may remember, we had a memorial service for Jessica at the JA Snow Funeral Home. For me, I needed to have a service. I wanted a church service initially, I wanted an open caskett to show everyone how beautiful she was, I wanted a burial service. I wanted so much to happen for this day, and I wanted everything perfect to honour her completely. We didn't have a church service because we couldn't play the music we wanted or add the special touches that we felt we needed. We wanted to play the song "Precious child" during the ceremony. We wanted pictures at the front of the service and Jessica's clothes and blood pressure cuff, and hair and all the little things showing how tiny she was. We wanted to tape the service...although the lady who was suppose to press play forgot. We wanted a good location for everyone so that our friends from work and the IWK could make it, and we thought Bedford was too much out of the way. We couldn't have an open caskett, because her little body was so tiny that they couldn't put enough make-up on her to really show her true beauty. They told me they couldn't do her justice. I had hoped that I could hold her one last time after the wake. To hold her and tell her how much I loved her, and how sorry I was, sorry for any pain she went through. Sorry that I didn't help bath her, or sorry that I didn't spend more time with her at the hospital. I loved her so much, but honestly it may have been better not having a casket, because I'll tell you, holding a dead baby is extremely painful. You can't hold them and be happy for them that they had a good life, that they experienced so much...because she didn't, she had a month. A month hooked up to wires and machines, and her guts cut open and resting on the outside of her body. She had pain. And she missed out on a great life.

Because there was no wake, no caskett, we had her little body cremated, which helped in our decision about burial. At first the funeral director had told me that because she was so tiny, she would have very few ashes. This really upset me. The thought of her entire life being burned and only having a tsp of ashes to show for it, was actually quite devasting to think about. So I was maybe inapropriately pleased when I realized that her ashes actually filled the entire little urn. This was also a very difficult moment, seeing what was left of Jessica in an urn for the very first time. Last time we saw her, she was in our arms, now she was in a container, much smaller then the incubator she lived most of her life. She still rests on our mantle piece, because we dont' know where we want to bury her, or where to scatter her ashes. I really just can't imagine her being anywhere else right now.

Although everything didn't go exactly the way we wanted this day, we did feel a sense of contentment in that she was truly honoured. My favorite part of the day was seeing our coworkers, friends and family. I had no idea who was going to show up for the service. I hoped many of our friends would come, but it was on a Tuesday so difficult for people who lived away to come. That was another thing that didn't go as planned. We wanted the service on Satuday so friends and family could travel and people wouldn't have to take the time off work, but there wasn't enough time to put the obituary in the paper, have everything organized, and also the funeral home was booked. But it didn't matter. Because the chapel was packed. Everyone came regardless of what day it was. Every single one of Keith's close friends (they call themselves the Eds) showed up, I honestly did not expect it. Friends of mine from Fredericton, Moncton came, my Nanny, my aunts and uncle, Keith's aunts and uncles, friends of our family, two full rows of my coworkers, Keith's coworkers, nurses from the IWK, Dr. J.... families and friends from here and away...Seeing the chapel full, helped us so much. It helped us to remember that Jessica's one month alive WAS important and she was honoured. I may have ranted in the past about everyone saying the wrong things to us at the time...but do you think I remember what anyone said to me at the time anymore? Not really, but I remember who was there for us. We needed everyone one of you, and we continue to need your friendships and support, thank you for being there for us.

It has been over a year since Jessica and Alyssa's birthday, and next weekend will be the anniversary of Jessica's death. What has changed since that day? I still feel empty inside, I still feel the pain, but I dont' think about it daily. I do what I have to do to be "normal". For me, thinking about the girls birthday coming up, was worse then the actual day. I cried thinking about running on Mother's Day...and remembering where I was year ago at that time. The day itself was rainy and cold, but it was nice. I spent it with my Mom, ran a half marathon with my Dad, went out to breakfast, limped along the rest of the day. Keith took Alyssa's actual birthday off, we shopped. ALOT. I cried once. I cried when I sang happy birthday to her, it came out of nowhere, but then I was fine. I cried thinking about her birthday party coming up on the weekend. I cried thinking about singing Happy Birthday and looking around the room and seeing 3 sets of twins, Alyssa's NICU survivor friends. On the actual day, I was a warrior. I didn't look at anyone other then Alyssa and I sang and held back my tears as difficult as it was, and I was SO very happy for Alyssa. She is an incredibly happy baby. It wasn't until Alyssa's follow up appointment the following week where I completely lost it on the way home in the car. It was unexpected. I have been to the IWK since, I've been to the NICU since, but for some reason this day, everything hit home, and all those memories from last summer hit me and reminded me of what I've been trying so hard to forget, or push aside. Together as a family and with our friends support, we made it through most of the "firsts" of our first year missing Jessica...This Friday will be our last day of firsts. I can't really say I will ever be ok, knowing what I know, and remembering our loss, but time has helped, getting through our first year has helped, and knowing all of you has helped.

2009-05-12T20:17:00.002-03:00

Today is their birthday. 1 year ago today. This is a video showing how small and very real and alive they both were, despite the many lines, tubes and dressings that nearly covered their entire bodies. The video is mainly Jessica, it was played at her memorial service last June. Alyssa is on the left with the IV in the head when both girls are together...she was the baby who looked more ill at the time, but yet she is the baby with us today, doing super amazingly fantastic.

Thanks to everyone who wished Alyssa a happy birthday today, and who also remembered how very real and loved Jessica was and always will be to us.

How are you doing

2009-05-05T09:14:00.008-03:00

I remember typing to you last year around this time...I believe it was the second longest week of my life. Trying desperately to hold Phoebe and Ursula in a little bit longer....that week had my 30th birthday in it, also Mother's Day, and of course Jessica and Alyssa's birth day. This year this week again has my birthday, Mother's day and this year Race day, and the girls 1st birthday...Alyssa's 1st birthday party.

People are always asking me "How are you doing" as we get closer to the year mark, which feels deja vu and makes me think back to those days after Jessica passed away. I knew it was a common, normal question, but every time I heard it shortly after her death, I became angry, and wondered why people didn't think before they spoke. I mean really, I just lost my baby, how do you think I'm doing???? Because it was very few people that REALLY wanted to know how we were doing, it's an awkward conversation to some, uncomfortable to most, and not a feeling of welcome, even when people say "I'm here anytime you want to chat". Unless you had a box of kleenex and AT LEAST a half an hour, then you really didn't want to listen. I could see it in people's face's...they would ask the question or say a remark all squeamish and uncomfortable hoping that I wouldn't really take them up on divulging into a deep honest conversation...and relax when I didn't. I told people what they wanted to hear for the most part..."I'm ok, doing as best as I can considering" It felt so rehearsed. Even the people I am closest to, my own family, I said what came the easiest to move on from the conversation. That is my fault. I tried to make things easier for them and myself...which brings me to today.

How am I doing this week? On the positive side...well I don't get angry when you ask me this question for one. But you will still probably get the same response I gave a year ago. "I'm ok, doing as best as I can considering". Also, I can go to bathroom by myself and wipe my own behind without relying on a bedpan, which in my mind was a terribly embarrassing and helpless feeling.
I mentioned a couple posts back that I was going to start training for another half marathon which happened to be on Mother's Day...well I did most of the training, minus a couple weeks off for illnesses and other things going on in my life. And the race is this coming Sunday, I absolutely love race day, and get extremely excited when I see runner's out doing there thing especially Sunday morning. Last spring and summer as we drove to the hospital everyday, I watched the runner's on the Bedford Highway with envy...wishing that was me, this year it was...I wonder if there is a poor shmuck in my shoes watching me as I run wishing they could feel free and independent rather then lost and scared as they face the challenges of the NICU.
So yes, for the most part I'm ok, honestly. Alyssa had a great year free from being admitted to the hospital. In the past month I get very little sleep, and my thoughts on the matter have changed recently. I'm tired, but I'm lucky to be able to get up with her...even if it is 3 am. How we went from sleeping through the night, to regular nightly awakenings I dont' know, but it will pass I'm sure. She will only be small and wanting my cuddles for so long. So I'll take them no matter what time of the day it is.

On the negative this week, I am sore. I've managed to hurt my knee again this year, and also hurt my other leg slightly from overcompensating for the bad knee. I will take the rest of the week off to rest in hope I will feel better race day. I can walk fine, but stairs are a bit of a challenge, especially going down. And after all of this training I am still 10 lbs overweight from where I would like to be, I didn' t lose a single pound with all of this running, pumping and breastfeeding. Weight isn't everything and it is not the focus of my life...but every once in a while when I am getting dressed, I see glimpses of my old self (if I suck in hard enough)...not that I was ever in fantastic shape, but I had more confidence at one point. Maybe my new spanx will help with this ;)
This past year I haven't felt like myself with body image yes, but mainly mentally. I often wonder if I will ever be "me" again. I have caught glimpses of the old me occasionally where I feel very happy and positive and full of energy, mainly while running, but it doesn't last long, I can only run for so long.

I feel disconnected and like some alter ego watching from the outside. I know how I want to be and how I want to feel. But I just can't seem to get there, I can't even explain it. I feel sad and like I've disconnected myself from Jessica this year, which I feel terrible about, but it is how I got through the year. Instead of feeling that closeness to something bigger...our angel or God, that some mother's feel after they've lost a child, I ignored the feelings I was having or pushed aside any thoughts that would make me feel vulnerable. I'm feeling a little lost for words right now. I've never really been good at embracing my feelings, other then here I guess. So...the big question "how am I doing this week?", I'm still here, and I'm ok....doing the best I can considering.

Balloons, cakes, and angels

2009-04-20T22:18:00.003-03:00

Wowsers. Alyssa is turning 1 in less then a month. I can't believe it has been almost a year since the day I delivered two perfect little girls weighing less then 3 1/2 pounds together. I will always wish that Jessica could be here with us, healthy, happy and alive, but I know that this wasn't possible. She wouldn't have been healthy or happy...she is happy watching over us now, and watching over her big sister helping us plan her very special birthday. I can just hear her saying... (if she could talk)

Now Mommy, don't be sad, I know you miss me, and I miss you too, but now is not the time. We have some planning to do, and celebrating, with balloons, and cake, and yes....angels too. My twin sister is going to be 1 year old, and she's done so well this year. She deserves a big party with family and friends and happiness. I've done my best to keep her out of the hospital you know, that's my job...to protect her as much as I can. As for me, I know you won't forget me, but let Alyssa have her day...and then in a month time we can cry together on my anniversary. I love you Mommy....

and I love you too Jessica, more then ever.

Them vs Us

2009-02-04T19:21:00.006-04:00

When you lose a baby, the world feels like it is divided into those who have lost (US), and those who have not lost (THEM). Same feelings when you've been through the full NICU experience...you feel like you can relate and be yourself around those who understand your situation the most vs everyone else who has had a healthy happy pregnancy and delivery, and fortunate to have a happy healthy baby.

I'm sure it has been very obvious in most of my blog that I too have felt like this. Honestly, part of me will probably always feel this way. But I also feel lately that I am starting to become one of you...and starting to come over to the other side. I WAS a very angry person, I was very depressed, to the point where I didn't know if Keith and I would remain together, I spent all my time wondering why us, and really hating everyone else. I too felt SOME of the same things that many of my grief buddies still feel...upset to hear of friends/family's pregnancies, upset to see other pregnant women (well for me it is mainly seeing other sets of twins)....bitter that some people do not appreciate the children they have, and do not treat them as well as I would have treated and cared for Jessica, angry on how ungrateful some people are....etc. I've found that in meeting with my grief buddies lately, sometime I feel more down and depressed after meeting up with them then I did before. I think it is great that we can all "rant" to each other, and I will always listen...but I don't feel the same way they do about everyone. I don't think you are all ungrateful, and I don't think everyone means to hurt us baby lost mamma's intentionally...I mean really, we are all hurt very easily and can take anything that anyone says personally, so I feel for YOU too...

Babies are miracles. They are SO amazing and wonderful, and almost all babies are incredibly cute, and so helpless and innocent. But in saying that, they are also a lot of work, and can be tiring at times. Mom's who have lost their only babies, don't see this side of it, because they've never experienced all the joy and stress of their baby here on earth very long. I've been on both sides at the same time, and although I would take having my baby here on earth more then anything, I still wine occasionally too, but NOT to my grief buddies. I'm writing this because I often feel that people think they cannot "rant" to me about their stressors, or how difficult life can be with one, or two babies especially. Maybe a couple months ago...fair enough I probably would have thought..."how ungrateful you are to complain about how busy and tired you are with one or two babies...be happy they are alive." This was me still feeling sorry for myself...which I will probably continue to do on and off for years to come. But in reality, life can be stressful and tiring. I get exhausted with one baby and an older sibling from time to time, it is not a piece a cake. Thankfully, Alyssa finally started sleeping through the night...she was never a great night sleeper or day napper. Just because I complain, does not mean that I am ungrateful, nor is everyone else. I feel for you mothers who have twins during the busy and hectic times...I want to be you, but also wonder how you do it. I envy you.

Yesturday I went to the IWK for Alyssa's 3rd RSV shot. I met a friend of mine who is a wonderful mom to twin boys. Sometimes I feel like everytime she sees me, she feels she needs to tell me how grateful she is, vision problems and all. I know you are grateful, and busy, and sometimes probably also miss your time to yourself. You are allowed to complain to me G :)During this visit I also saw a young girl in a full body wheelchair with many gadgets. She couldn't talk or move, or eat. I saw her blink. I don't know her story, and I have no right to guess it. But at that moment I knew that I didn't want Jessica to have to suffer like that. I knew that I would never want her to live with no quality of life (even though I know she would never have lived that long), seeing her made me realize that our decision was the right one for us.

The purpose of this post was to simply say. I love my babies with all my heart, but some nights I am so happy it is time for bed.

most beautiful girls in the world (to me of course)

2009-01-28T21:24:00.007-04:00

(feel free to pause music on bottom right of the blog)

Call me superstitious, call me paranoid...whatever. I kept putting off writing anything about Alyssa in fear that if I wrote how well she was doing, something bad would happen. But now that she has caught her first cold, and luckily it was JUST a cold, not RSV...I feel like it's ok to write something. Cold and flu season really sucks when you have a prem baby. My knuckles and skin in between my fingers are raw from washing my hands so frequently. We've had our share of colds in the household, but with washing and wearing a mask Alyssa kept fairly healthy, no hospital visits and 2 (almost 3) RSV shots later...Another disadvantage of having a prem baby is that we are supposed to try and avoid all the "big toys" as much as possible like the jolly jumper, exersaucer, bumbo chairs, etc. Mainly because they don't help in developping Alyssa's muscles needed to sit up and roll, and can actually enforce toe walking and extension in her legs which we DON'T want as these are often seen in children with cerebral palsy. In a perfect world we would be on the floor all the time with our babies trying to play with them and help them with head control, rolling, sitting up, crawling...Of course this isn't always possible when you have other children.

She hasn't been weighed in a couple weeks, but probably weighs around 13 1/2 lbs at 8 1/2 months and 5 months corrected. She is a super smiley baby, just like Emily was...her entire face lights up when she smiles. And her giggle...it is the cutest thing I have heard in a long time, unfortunately we haven't heard it very often. We must not be that funny. The one day where she was laughing in hysterics was when Keith and Emily were goofing around, it was priceless! She has been to follow up appointments a couple times now, and will go again at 8 months corrected. This is where we meet with the doctor, a nurse, physiotherapist, dietician, and occupational therapist if needed. Developmentally, physio is happy with Alyssa. She seems to meeting all of her milestones, although her 8 month assessment will be a better predictor on how she is doing because she will be moving more then. She is not rolling yet, so I do have to work with her on that, but not ALL babies roll by this point. I am not concerned yet. She did have tight hamstrings a couple months ago, and would only turn her head in one direction, but with catching these things early and doing exercises to correct them (stretches), they have resolved and now I do them much less frequently then I did before. Other then her lungs, all the hand washing and extra cleaning and keeping her away from people with colds and flus (which happens to be most people this time of the year), all of her doctors appointments, and some extra hands on "play time," Alyssa is just like any other baby, except extremely special and probably the cutest baby I know at the moment. In saying that...it reminds me of the other day when I was singing to her "You're the most beautiful girl in the world...." by Prince, although I sound nothing like him. If you know any Flynn's...you know how out of tune we sing, but Alyssa loved it. But then I stopped, because I had a moment of guilt. And started thinking of Emily, she's just as beautiful...so I changed the song, to "the most beautiful baby in he world, yes you are..."...but then I started thinking of Jessica, so I had to change it again to "the most beautiful baby in the world on earth..." My voice, these words, not a pretty site, glad Alyssa enjoys anything out of my mouth. Does anyone else ever get like this, where you say something and then feel like you need to rephrase to make sure all of your children know they are loved equally?? As I read over this blog last week, I started to feel bad again. This blog really was meant to be an update of my pregnancy and how the girls were doing, which it did, but I didn't mention my other daughter, Emily as much as maybe I should have.

She is "the most beautiful 2 year old girl in the world..." And she loves her sister SO much. She is definetly going through the "terrible two's", but luckily I usually only see this side of her when I pick her up from the sitter's, other then that she's good as gold. She is going through a "mommy, mommy" phase which can be frustrating for both Keith and I, but also makes me feel SO good when she wraps her little arms around my neck and tells me how much she loves me. I remember being on bedrest and being so upset that I couldn't lift her or play with her much, I'm pretty sure she's forgotten all about that time. Last night I was reading to her before bed. She picked the book "Goodnight Moon". Alot of memories flashed in my head as I was reading her story. I read this book to both Jessica and Alyssa every night before I left the hospital when they were in the incubators, and before I could do much hands on with them. The things that stick in my mind...

Forgiving myself

2009-01-20T10:02:00.006-04:00

Things change, people change...I've definetly changed. I say this after going for a run and realizing that I need to upload some new music onto my mp3 player. When I see other runners outside I often wonder what they are listening to. My first song on my "running tunes" is "You shook me all night long" by ACDC. The beat makes you want to run. Well, it used to anyways, not so much today. Have you ever listened to the lyrics of the song?? Probably not the most appropriate song for a mother of three to get pumped about. Today I ran my fastest to "Amazing"...the song you're listening to as you open this blog. Yes things have definetly changed. My outlet of running has become a little more then running itself. As I think ahead to probably the most difficult times ahead of me this year, Easter, the girls birthday, the week of Jessica's death, I am trying to find ways to keep myself busy. Mother's day weekend... that Sunday was a very scary but also joyous day in my life. I delivered two beautiful girls, both alive. I'm lucky to have spent a month with Jessica, and to have Alyssa doing so well and holding a special part of Jessica inside of her for us to always see and remember.

2008 was a difficult year. But as Joseph Campbell said " "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us." I have gone over in my head over and over again, to the point of exhaustion trying to figure out what went wrong, how this all happened, when did problems start, etc. I read over my entire blog last week and remembered that Friday before I delivered...the fluid around Jessica was minimal and dangerous...maybe this is when her brain damage occured, maybe this is when she lost perfusion to her bowels and developped NEC. Trying to find the answers for the 'what if we did something differently' is not possible. I have accepted that I could not have done anything differently to give Jessica the life I wish she had here with us. I have accepted that I did everything to have her with us as long as possible, and ultimately we made the best possible decision for her by letting her go without suffering. I was lucky to meet her, and to hold her and be able to call her my daughter. I miss her everyday. But I also count my blessings everyday. It could have been worse. I could have missed that very special month we had with her that gave us a lifetime of memories. I could have lost them both, which many mothers have saddly experienced.

So as the time approaches, my running outlet has surfaced again. It is now time to start training for a half marathon, with a little over 16 weeks from now. I was thinking of running the Bluenose marathon in Halifax, and probably still will. But Mother's Day is the day I really need to keep busy, so I've signed up for the Fredericton half marathon. Dad is also running this race, not the same reasons obviously, but it will still be nice to have him there. I'll be the one running through the finish line with tears in my eyes. Tears of sadness, and happiness and wishful thinking I guess...but not regret. I'm passed that, or so I think I am today. Do me a favour and kiss your babies, tell them you love them, and be grateful that they are with you today...they truly are amazing.

(Update on Alyssa in a couple of days)

Christmas Cards

2008-12-12T10:15:00.004-04:00

Do you ever just NOT feel like sending out Christmas cards? Keith was asking me weeks ago..."Have you started them yet? Did you buy any Christmas cards...? I hummed and hawd, and decided to go on strike this year, lol, NO Christmas cards, they take to much work, and I am just NOT into it this year. But then one day as I was looking at the online Walmart flyer, I discovered what many people have been doing for years...the best and easiest thing ever....Picture Christmas cards! So I picked a picture of the girls, and sent it online, and then an hour later went to pick them up. You don't even have to sign them, and they provide the envelopes. All you have to do is write addresses on the envelopes and stick the cards in...easy as that. I feel like I'm cheating a bit without doing any writing, as most of you who know me...know that I cannot send a card out without writing something personal. So there, done...I guess I will get Christmas cards next year. If you haven't received a card by next week, it means that you've probably moved in the past couple of years and I don't have a recent address, or maybe I never had your address in the first place, or maybe I just dont' want to give you a Christmas card....ha ha, just joking. Seriously though, I am not going to write everyone I know and ask for your address, so if you would like one of my new favorite photo christmas cards, please send me your address.

The "warrior" in myself

2008-11-17T11:23:00.003-04:00

Today was the day that I thought I was doing well. I decided that 5 months later, I am stronger, I have come a long way, I still have many sad moments when I think of our summer, but they are moments and not full days....so I reach for the large bereavement package that was mailed to me months ago from the Twin Twin Transfusion Syndrome Foundation that has been sitting on top of my dresser. I read the first line "the loss of a twin..." I stop, take a deep breath in while wearing a mask on my face to prevent Alyssa from getting my cold as I hold her in my arms. That is as far as I could read...thank goodness Alyssa was ready for her nap, as I worried about my tears infecting her with my cold germs...I layed her down in her bassinet, and courageously picked up the pamphlet again along with a roll of toilet tissue and started all over.
"You were pregnant with twins, but now you have one baby to hold and to take home. These experiences are difficult to share...." "The following are possible reactions you may experience"
As I read through all the reactions, I couldn't stop crying, I'm still crying as I type this entry. None of these reactions are something I am seeing for the first time, we went through all of them in my bereavement sessions, which finished and I felt good. But now as I look over them, I feel that I am right back where I started, like I really haven't worked through as much as I thought.

Shock and Denial: This was the first reaction felt obviously, this is how we were able to get through those first weeks, by feeling numb. I don't have this feeling anymore.

Anger: I thought I got over this, but as I read, I realized I wasn't. I am still angry at the Dr. who was so cold to us. I am angry because I feel like he wasn't completely honest with us. I guess he is really the only person I am angry with.

Guilt: Will I ever stop feeling guilty, or experiencing the "what if's?" or "why's?". I thought I was at a good place, or was getting there. I realize that there are some things that we cannot control, I do, but I constantly wonder if Jessica had more strength then we gave her credit for...Could she have overcome everything against her? Probably not, but that is a what if that I can't seem to get out of my head. I had a visit with my friend a couple weeks ago. She had identical twin girls in March and it never bothered me going to visit her. I don't know why really, because seeing other twins always upsets me...other twins who I don't know I guess. But this time it was different. Seeing her girls older and bigger and more interactive crawling around everywhere was hard. I will be ok, and will see them again of course, but it's harder now for some reason, then it was initially. I often wonder if we had just given her more time...maybe she would be crawling around and interacting with Alyssa like these girls were.

Acceptance: "As the intensity of the shock, denial, anger and guilt subsides, you will begin to accpt the reality of your twin babies' death. this is a painful step, but it is the beginning of healing." This is where I want to be, and in some ways I may be...but as I read through the pamphlet the sadness overwhelms me, and my nose fills up as the tears come pouring down.

The final reaction I read was Sadness: It says that it never truly ends, but becomes more bearable with time. I think I am feeling the "intense sadness" they talk about that can come up unexpectantly and bring tears anytime for many years. Maybe because we are so close to the holidays...My favorite holiday of Christmas which we never were able to share with Jessica.

So that is as far as I read. You'd think because I couldn't read any further, that I would stop. But no, the warrior in me decided to go to Jessica's memory box and look through her belongings, if only for a second. That second was brief, I am not ready to look there right now, I am not ready to look at pictures of my dead baby, no matter how nicely they bathed and dressed her for us to hold her one last time. It's just way to hard. So why could I look through these pictures months ago, and watch her video everyday, and now I can't look at pictures of her living or dead? I'm not nearly as strong as I thought I was...as I sit here pouring out my heart to friends, family and strangers who often read my blog, read all the gut baring thoughts I have that show how weak I am, how I havent' "moved on"... Is this blog really a form of therapy for me? Sometimes I think yes, and then sometimes I feel like a fool after I hit the publish post button baring my heart and soul out to people who rarely reply to anything I say.

Jenn's rant #6

2008-10-28T23:26:00.005-03:00

I often wonder if people have any clue on the impact they can make on other peoples lives. My OB, for example, is often discussed with many of my friends and relatives on luncheons because we have all had her for a doctor during one of our pregnancies. She has such a huge impact on all of us. Her opinion is so valuable, and we are always comforted by talking to her. And even when I didn't see her the day after I delivered and was extremely bitter...I completely forgave her the second she did come to see me, even if it was days later. I recently met with her again as a follow up to my 6 week post op appointment to "check in" and make sure I was doing ok. I thought this was really thoughtful of her to suggest. I'm no longer pregnant, she really doesn't have to follow up on me, but she does...and she cares...I wonder if she has any idea on how much I value everything she says? We discussed possible future pregnancies...Not that I plan on being pregnant anytime soon, but I needed to know what would happen if I decided to go down that road again. She told me that I had a lot going against me before, which I already knew...twins, and TTTS....so chances are, I could probably carry a normal singleton baby again. However, there is still the whole issue with my "incompetent cervix". If I did get pregnant, I would be seeing her as soon as I found out, and I have the choice of whether I do a cerclage immediately after the first trimester or play the "wait and see game", which I think most of you know by now, I don't do that game. I felt better after our discussion, a bit hopeful. I'm not sure if I will ever get pregnant again, but I don't want that option to be taken away from me.

I remember almost everything and everyone...sometimes a good quality and other times a bad one to have. I remember the Dr. who was working the shift before I delivered, and how she came to talk to me the next day even though she had nothing to do with my delivery (however she did deliver Emily, which I'm sure she doesn't remember). The Dr. who delivered Jessica and Alyssa was also the Dr who admitted me on bedrest and who performed my first cerclage with Dr. M. She is also my GYN who I see yearly. I realize that Dr's can be extremely busy people, but I was very shocked, and a little angry to be honest, that at a recent appointment this Dr. didn't even know about Jessica passing away. I've always had a good relationship with her, and had a good opinion of her up until this last time with her. Are doctors really that impersonal that they don't follow up on their patients at all??? I saw her 5 times this year, and 3 of those visits were pretty scary times for me, but yet she had no clue. I went into the appointment nervous and feeling a little overwhelmed because this was the first time I saw her since the birth of the twins...but I never thought I would have to tell her that the baby she delivered passed away. And her response?? "oh that's tough".

Some people really have no idea how much of an impact they can make on our lives...So many people who I was close to before this past summer were too chickenshit of what to say to me, so they said nothing, and still say nothing. I still talk about normal things you know. I have way more respect for someone who communicates and says all the wrong things, then someone who takes the easy road and says nothing at all. In saying that, there has also been many more people, friends, family, and some people who I barely knew who have become very close, and made a big effort to not ignore me, and not pretend that nothing happened....some who have even gone out of their way to look up information about losing a twin for me, and for themselves to try and understand. I often forget that it was only US who lost a child, and the rest of the world continued on like normal.

RSV season

2008-10-10T15:35:00.005-03:00

Although I know most of you are very good at letting me know when you are sick with colds and flus, I still feel like I need to send out this blog for anyone who may be visiting, or in case we may be visiting you. My friend, Georgina, sent out an email recently, which I pretty much copied, that reminded me to do the same.

As you all know Alyssa was born very prematurely at 25.4 weeks to be exact, and although she is very lucky and relatively healthy in the big picture, she still has a higher risk then most babies of getting infections and becoming extremely sick and even hospitalized with something as simple as the common cold. Being back in the hospital means she would be getting regular blood pressure checks, getting held down to have her heels pricked and squeezed for blood, and possibly having an IV for medication. Which would also mean we would be away from the other half of my family, which really I think we've done long enough this summer.

Not to sound controlling or rude, but if you're even a little bit sick (snuffly nose, cough, feeling run down) or you've been around someone who's sick, we'd prefer it if you waited until you were feeling 100% before coming over to see us. We will all be getting the flu shots, and hope that if you are seeing us on a regular basis that you will too, and Alyssa will be getting a series of shots for RSV this season which is from late fall to early spring. RSV, or respiratory syncytial virus, is a common, easy-to-catch infection that is similar to a cold. Although most babies catch this infection in their first 2 years, they usually have no major symptoms other then a regular cold, same as adults. However, babies who were born prematurely, and have lung damage are more at risk for serious consequences. The medication she will be receiving is not a vaccine, therefore does not prevent her from getting the virus, but it does help reduce the risk of more serious infections. For example, perhaps prevent her from being reintubated. Please read the following link for more information :

http://chealth.canoe.ca/channel_section_details.asp?text_id=3344&channel_id=2026&relation_id=18293

If you do come to the house, which we hope you do if you are healthy, please wash your hands right after coming in....we also have a bottle of hand sanitizer as you enter the house. If you sneeze or cough, please wash your hands afterwards and a good rule of thumb is to keep your hands away from your face...so cough into your sleeve, not your hand. We ask that you do not kiss her face and only touch her hands if you've washed yours, as her mouth is the first place her hands usually go. Alyssa's lungs will develop into normal and healthy lungs, hopefully before she turns 5 years old, but until then, or at least for the first two years we have to be extra cautious. Thank you for all of you who have already been extremely cautious by waiting until your colds were over before seeing us. I may be a little bit paranoid, but really I think I have every right to be, don't you??

Remembering

2008-10-09T12:22:00.006-03:00

I feel a little bit like a jack-in-the box. It's been over a month since my last blog entry and now I feel like I've just popped out of the box and have so much to say. I haven't decided yet if this will be one long blog entry, or a couple different posts, I'm thinking a couple different posts.

The past month and a half home has been wonderful, really. We've had lots of appointments, lots of visitors and only one little scare. We've had 2 follow-up appointments and 3 Dr's appointments. Alyssa now weighs 9 lbs 13oz, she was taken off the fortifier formula, so she is now only drinking breastmilk, and still growing well with it. The fortifier gave her an extra couple of calories for her feeds. Her eyes are doing well, she has been cleared at her last checkup for ROP, which was a huge relief. Therefore will only have to get her eyes checked again at a year. Her most alert time of the day is after supper, and she stays awake until it is time for bed which is usually close to 10-11pm.

All is well, and I fit into 3 pairs of my pants. My second week home I started running again, and it really feels great. Running has always been my time to think, and reflect...if I'm angry I work through it, if I'm sad...the run lifts up my spirits, and if I'm already happy...it makes me even happier. In the spring I'm planning on running another half marathon, but I'm looking for one with purpose. The only ones that have really caught my eye so far, are the Team Hole in the Wall runs which are for seriously ill children to enable them to go to camps free of charge with all the medical help they will need. I love running, but I am not a natural runner. I'm not like my brother Jamie who can decide one day that he is going to go out and run a 10 K without any training. I struggle to get out the door some days, and I don't always feel great during my runs, but almost always feel great at the end. When I run now, I think of Jessica...and I think of all the other babies and parents who've been through what we've been through. The families who lose a child, and the children who survive but are left with no or very little of a quality of life. After every thing we've been through, and from reading what others have been through, I feel like I need to make a difference...whether it's making some donations, talking to other familes, or running a marathon, just something that helps me feel like I am keeping Jessica alive. October 15 is a day to remember.

October 15 is Pregnancy and Infant Loss Rememberance Day recognized throughout the States and just recently in Ontario and New Brunswick, where they have already established some "Walks to remember". The first Walk to Remember was held in 1986 in Chicago, Illinois to walk the steps that our little ones never had the chance to make themselves. In 1988, President Reagan proclaimed:

"National observance of Pregnancy and Infant Loss Awareness Month offers us the opportunity to increase our understanding of the great tragedy involved in the deaths of unborn and newborn babies. It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems."

Presently, this day is not recognized in NS as Pregnancy and Infant Loss Remembrance Day, but I'm sure it will be in the future if I have anything to do with it. All over the world, from 7-8 pm candles with be lit to remember Jessica, to remember ALL babies who have died from miscarriage, stillborn, neonatal death, and SIDS. If everyone lights a candle for this hour, there will be a continuous WAVE OF LIGHT over the entire world for this day. I think that is pretty cool. This helps me to feel like it is "ok" to grieve, and it is ok to talk about Jessica, and let people know that I need my family and friends to remember Jessica with me. Keith and I will be going to the IWK that evening in the chapel where other parents grieving for their loss will attend the candle light ceremony. So I invite you all to light a candle for this hour, for Jessica, and/or for friends and families of yours who have suffered loss of a baby in any way.

Well my tears have slowed down in the past month. I hadn't cried in a long time... not until this past Tuesday with my last bereavement session. I've been attending grief work sessions for the past 7 weeks. I am feeling better, but I am not sure if this is because of the sessions, time, or my busy schedule. I feel a little bit like the outsider in my group, because I am the only mother who lost their baby after a month. The others had stillborn babies. Since my pregnancy, I will always fear delivering prematurely, but now I think I will also fear delivering full term to a stillborn. I never realized how common this occurs. Imagine making to 37 weeks of your pregnancy to find out your baby has no heart beat. Although we lost our babies under different circumstances, we still share the fact that we are all grieving for our children. These women have as many "what if"questions as I do...what if they had a c-section a week earlier, a couple days' earlier??? It's scary really. I don't mean to scare anyone, because really, in most situations our babies come out into the world crying and into our arms warm and cuddly, but not more loved then if they were stillborn, or only with us for a month.

On Tuesday, we had our own little candle ceremony remembering our babies, and watching the flame initiated my tears and all my thoughts and dreams that I had for Jessica. It's just like our facilitator told us day 1...our grief is unpredictable and will not likely progress in an orderly fashion. When we least expect it, even if we're feeling completly "normal", something happens that overwhelms us. I won't "get over" it, but am starting to "live with it"

The End and the Beginning

2008-09-09T22:50:00.009-03:00

My legs are shaved, my toenails are polished, my laundry is done, my floors are swept...and our lawn is mowed. It is SO great to be home. After two great nights rooming in with Alyssa over Labour day long weekend, we were finally able to go home August 31st after 110 days in the NICU.

From being critically ill and close to death's door, intubated, extubated, reintubated, oscillator and nitric oxide, pneumonia, good days, bad days, more then half of dozen blood transfusions, RDS to BPD, mild ROP, another infection, many apneas, many IV's, poor feeding, many restless nights... and losing a twin sister...were just some of the obstacles Alyssa went through to get her to her discharge day. We waited for the day to take her home for so long, but when it came...it was a very bittersweet moment.

Charlotte and Shelley were both working and able to see us off, and Courtney came all the way in to see us, but missed us by minutes as we were discharged much earlier then we thought. Jessica's picture was sitting with Alyssa in her car seat as Keith and I headed out those swinging NICU doors thinking... this is the moment we've been waiting for since the day we arrived in the NICU in May...so bittersweet...Keith should be carrying one car seat and me the other. Instead we have a pillow with a picture. We've come along way. Although there is still a lot of pain, and guilt, the anger is gone. I'm starting to feel less depressed. And I never realized how depressed I was until I started to feel better, happier.

Our first week home has been great. She's eating, she has long alert periods, and the first couple of nights was sleeping 5-6 hours. That changed quickly, and I'm back to the normal waking up in the middle of the night and staying up for a couple of hours...but really, who cares?? I may be cranky with the lack of sleep sometimes, but I'm home and cranky... and I can wear my comfy pants all day, I can make meals again, I have time to sit and drink my coffee in the morning, I can visit with healthy family and friends, I can talk to people on the phone, I can start my thank you cards once again, I can be me, and laugh and cry whenever I want, without feeling like I am spinning. The spinning has stopped ;)

Yesturday was our first follow-up appointment, and Alyssa gained 180 grams since discharge, which they were happy about. But we will have to continue to monitor her weight closely as she is gaining in the lower end of the "normal". Her eyes were checked again, and her ROP is improving, so hopefully at her next appointment in 3 weeks, her eyes will completly be back to normal. We were so pleasantly surprized to see Charlotte arrive at our appointment. She stayed with us for the entire appointment, we were so happy to have her there. That morning was so great, because then as we were heading up to the NICU, we ran into Sharla who we missed saying goodbye to before we left. Then we ran into one of Alyssa's dietician's, Tara (Jessica's primary), Paula from transitional, and another mom friend of ours who was in follow up with her 2 boys at the same time. It was so nice to see everyone again, and to feel like some of them may have missed us as much as we missed them.

So this is it. This is all I have to say right now. I won't be updating the blog as frequently anymore, maybe once a month, depending on what is happening. I think this blog has definetly served it's purpose to keep all of you updated these past 6 months or so. There has been many more viewers then I ever imagined. Thank you to everyone for thinking of us, for praying for us, and for taking the time to read my blog to understand what we've been through. Thank you to all of our friends, family, and even strangers who continued to call and write me on facebook or personal messages even though I never had the time to talk or write back....You're support helped us to get where we are today.

Visitors are welcome to the house as long as your healthy!!

feels like home

2008-08-29T00:26:00.006-03:00

I took my second night off from the hospital tonight and went on a boat cruise with the wonderful nurses I work with at the HI. Last night I went to "what's for supper" in preparation for Alyssa coming home. I may have drank more then I can handle from being off all alcohol for a couple of months since Jessica passed away, which God knows I drank too much during that month. But it was nice to take a night off, and drink....and dance, and laugh...and smile. It's been SO long since I've felt somewhat NORMAL. Thank you Angela, Karen, Chris, Heather, Sheila, Anne, ... and everyone for helping me have a normal night...and more...You have no idea how nice it is to feel "normal."

It's been a long time coming. We really are ready to come home...we deserve to take our baby home. We are ready on so many ways....but yet so unprepared when it comes to saying goodbye to the friends/family we've been close to over the last 3-4 months. We've had wonderful care. The staff at the IWK are better then great, they are fantastic,...from the nurses to the friendly cleaning staff and ward clerks. We've had 3 main primary nurses who I cannot even think of a gift that would thank them enough for the time they've spent into caring for my girls and myself and Keith. Charlotte, Sharla and Courtney...you have made this long journey bearable for us. We could never have made it through without your hugs, your compassion, your sweet talks, and encouragement. YOu've all been there for us from the beginning and so close to the end, and we love you all so much. Charlotte who has been as close to me as my own mother...from the first week the girls were born...from the day Alyssa became critically ill, from the day Jessica passed away...from the second time Alyssa had an infection, to transitional care and hopefully until discharge...you have helped me get through everything more then you will ever know, and I love you like a member of my family....
And to Courtney, sweet Courtney...you've also touched our hearts from the beginning. Your creative talent with making the girls footprints, dressing up the albums, making the Father's day card for Keith from Alyssa...it's all wonderful...I will never live up to your beautiful matching beds, for you have been the most organized and color coordinated photogenic person I have ever met, and I love you dearly for being there for us. YOu will make the most beautiful bride this coming October!
Oh Sharla, although you may be a later bloomer, with only meeting our darling Jessica before surgery, you showed us from the beginning that you had what it took to be an important part of our little circle. You held a special part in our heart since the surgery, which grew much deeper when we realized how sick our little girl was. You stood by us, and told us what we needed to hear. We had to make the most difficult decision in our lives, and you made it seem possible and the only right decision. You helped us get through it all, and we will never forget you for this. I love you so much!!! I'm crying here thinking about not properly saying goodbye to you as we will be gone before you return from Vancouver.

We were so lucky to have these 3 wonderful people share our journey with us. We also had a couple more primary nurses who unfortunately were unable to follow us much after NICU 1. Shelley, who was Jessica's primary, who took Jessica out for her first kangaroo cuddle with me...definetly touched mine, Keith's and Jessica's hearts. Tara who was only primary for a short period of time for Jessica, but who was also very kind to all of us. And finally Rosanne, who we equally loved, but unfortunately was an E nurse therefore unable to spend much time with us in transitional. And Paula, who we met later in transitional, but who allowed me to spill my heart out to...which was a huge step in my "therapy", you will not be forgotten...

So here I am struggling, thinking on how I will say goodbye to all of these people who have touched my heart so much. I am so happy..to think that I can finally have a normal life home, but yet so sad that Jessica's only life was where we will be leaving so soon. The IWK was her home, and I feel like I am leaving her. I love her so much, it's extremely difficult to be so happy and yet so sad in the same minute. She is our angel, and now has a home in heaven, when she should have a home with us. She definetly left too soon...

Our day is coming

2008-08-26T22:59:00.003-03:00

The pain is so awful. I'm in excruciating pain. Why isn't the Morphine working? It worked every other time. It stopped the pain and knocked me out so that I could get another 3 hours over with. And why does this nurse keep poking at me for the babies heart rates? I keep telling her that anything touching my belly irritates my uterus, why won't she leave me alone!! The Dr. checked for the heart beats on U/S, they're both there, and she's still searching...Enough already, can't you tell I'm in pain!! ...Finally the morphine is working, the contractions are still there, but less painful, but what am I feeling...yuck, I'm wet...I'm bleeding. Bleeding is not good, it means my stitch needs to come out, which means the babies need to come out. I'm not ready, they are not ready. Dr. H told us 50% survival rate for a singleton at 25 weeks. The nurse checks my pad, yup, it's amniotic fluid, my membranes ruptured...this is it. Leave my belly alone, the nurse is still looking for the heart rate, even after the Dr. said she would set up for a c-section. These girls HAVE to be fine, they NEED to live. I CAN'T lose them. And they're going to be healthy. I can't even imagine losing one of them, I can't even think about it, I don't want to ever think about it...I don't think I could go on...

I remember this day like it was yesturday, but it also feels so far away. I lost one of my babies, and I'm still here, and I'm managing to go on...which sometimes makes me feel guilty. I'm so glad that I met Jessica, and that I had that month with her. I find myself thinking of her more and more as Alyssa becomes closer to discharge. I'm grateful that she was alive when she was born. I'm grateful that she felt how much Keith and I loved her, and I'm grateful that I was able to feel her love in return. I still cry at least once a day, but I hear that it gets easier in time. I met another Mom recently who lost her twin boy. I only met her once, and I admire her, and hope to be as strong as she is one day. I copied and pasted part of her blog entry here, in hope that I can live up to her kind words.

"(To the mama of the girl dressed all in pink)
Today should have been her birthday, three-and-a-half months after she was born.
Someday she’ll be underfoot in your kitchen tugging at your skirt, grinning up at you like a jack-o-lantern and you’ll think to yourself was that really us? I can hardly believe it even though right now, you’re walking around with your skin turned inside-out.
Someday you’ll be able to think of her twin without crying. You’ll breathe deeply and feel her saying to you it’s okay mama, I am watching you and look, look at my sister go and you’ll not see her smiling but you’ll feel it.
I wasn’t convinced of it for myself but I see it in you as plain as day. You are a warrior of a mama, more so than most mamas ever need to be. You feel like you’re spinning but you are not. As everything else spins around you, you stand your ground.
And to me, you are fifty feet tall."
http://www.sweetsalty.com/

I look forward to the day when the spinning stops.
I look forward to the day that Alyssa comes home...this day might be this weekend. Alyssa has done a 360 with her feeding...she is now feeding when she wants...taking less volumes, but still gaining weight. Her NG tube was pulled out 3 days ago, and has not needed to go back in.
Our time is finally coming. Saturday, Keith and I are rooming in with Alyssa at the hospital. If she continues to feed well, with no apneas, she can come home with us this weekend. It all happened so fast. Almost 4 months ago, my friend Jessica and I wished that someone would give us some strong medication to put us in a coma...only to wake up months later when the roller coaster ride was over. We are both finally so close to going home. Jessica is also going home this weekend. It has been a very long journey, and it feels so good knowing that we are close to the end of it. Please pray that the week goes well, and we can take our baby home over the weekend.

Happy 100th day

2008-08-21T23:09:00.002-03:00

Today was a big day, HUGE. 4 big milestones. Today was my due date, 40 weeks. All week I kept thinking about Alyssa being 100 days old on Thursday and being full term, but it wasn't until this morning that I really thought about it and realized that today, or closer to today I should have delivered twins, and yet here I am with only one baby. 1 baby who has fought really hard to get where she is today, and continues to struggle with her feeding. This is the life I was given, and I am still struggling to make some sense of it.

I remember months ago, when we had friends in transitional care who were struggling with feeding issues and appearing very frustrated...and I honestly wasn't feeling sorry for them. Here I was, still in the NICU with my babies who were on ventilators and oscillators and nitric oxide, and we were worried about whether or not they would make it through the day still alive. But now I am where they once were, and I realize that life is not a walk in the park once in transitional care, and now I feel bad that I couldn't empathize with them, because I want someone to empathize with me. Thank goodness for Gerry and Jessica and Joan, my NICU buddies who will forever be my good friends. After weeks of Alyssa latching on perfectly, but having difficulty with the suck/swallow/breathing...she has now forgotten how to latch, but ironically she can now coordinate the suck/swallow/breathing. I am so frustrated with spending over an hour per feed trying to get something that seemed so simple with Emily to happen. My other feeding frustration is that she will not take a bottle from me. She will take a bottle from Keith, from Courtney, and from Paula, however not from me. Meanwhile the neonatologist on for the next couple weeks, I can feel breathing down my neck as he wants to push us out the door. We are just not ready yet.

The title in this blog says "happy"...so onto the next milestones. Alyssa reached the 7 lb mark today on her 100th day in the NICU. Way to go Alyssa!!! Probably because she is getting most of her feeds by gavage and not having to work for her feed. Ok, enough of my frustrations for one day. Oh, by the way...I ate another cookie today.

And finally, probably the scariest milestone is that her oxygen monitor was discharged this morning. Her caffeine was discharged yesturday, and she had no apneas in 12 hours, so the monitor is gone. SCARY. She does still have her heart rate monitor if she stops breathing, but still, I rely on those numbers!! It was a much quieter day though, with less beeping going on, and trying to pay more attention to my baby rather then all the numbers. So that was our exciting day, 100 days, 40 weeks, 7 lbs, and no oxygen monitor. I feel like this should be a turning point...hopefully tomorrow feeding will go well.

Jenn's rant #5

2008-08-20T13:11:00.002-03:00

Today I looked at myself in the mirror with disgust, totally grossed out with the way I look and have looked for a long time now. Here I am almost 4 months after giving birth to twins, and tiny twins mind you...and still overweight and not fitting into any of my pre-maturnity clothes. Every morning I go through the same dilemma of what to wear. I sift through all the dirty clothes that are thrown on the floor, the dresser and even in the laundry bin in search of something that will look half decent, and not make me look fatter. With no time to do my own laundry for over a week now (however I do have time to catch up on facebook and read other peoples blogs until 2 am...), I do the smell test. Shirts don't usually pass, but pants and shorts seem to last for a long time. My good old beige maternity shorts with the high elastic waist to cover my protruding belly and a baggy t-shirt or tank-top...although tanks show off my not so flattering arms.

With Emily, the weight seemed to come off much easier. We did lots of walking, the nursing may have helped, I fit into my clothes quickly, even though I still carried a lot of baby weight. I ran a lot which was probably the biggest help. Different story this time. Although you'd think the stress of all of this would make me a mini-me, the Ronald McDonald room and all of its baked goodies have tempted me to much. Every day there are 3 volunteer shifts. And each shift the volunteers bake something delicious...usually the traditional chocolate chip cookies are a favorite, and then there are muffins, other cookies, rolls, cakes...you name it. Walking into a room with such a delicious smell makes it very difficult to not at least try one....of everything. I've never had great willpower, which is why I don't keep sweets or chips in the house. If it's there I eat it. So my best option is to just stay away from the room, however, this is where I usually eat my lunch unfortunately. Which is another problem. Up until yesturday, I bought my lunch almost every day I was here, although I tried to be healthy, it doesn't always work that way....especially since most days I am so rushed in the morning that I forget to feed myself breakfast, so by lunch, I am starved.

As I see all the "skinny" women walk past me, I want to vomit as I have been here the longest and could still pass as a pregnant woman. Monday, I made a batch of the old faithful...taco soup in hopes that by eating this, I will a) save some money, and b) eat healthy and lose some weight. This week I went 3 full days without eating any cookies, and to no surprize lost over 7 lbs from the "no cookie diet". Friday's is my cookie pass day...but only 2.
Well it was until 1 hour ago, when I could smell fresh blueberry muffins in the oven. So I cheated again, and tomorrow will go through the same feelings of disgust as I look at myself in the mirror again....and sift through all of my dirty laundry in hope that my beige shorts that I wore all week will still smell pretty.

There is some positive to being overweight though. When the weight eventually comes off, people usually notice and give you nice compliments. And for me, I'm kind of a yo-yo. In one year I could gain and lose 5 times, so although everyone just stays quiet during the gaining period and talk among themselves "have you seen Jen lately, she's gained a lot of weight"....that means 5 times of compliments when I lose weight....ha! So there you skinny girls...all you can do is change your hair style or something to change your look...

The time factor is always the problem. I love running, and if I had the time i would run every day, every morning. but when you are up till 1-2 am most nights (come on I need some down time too)...early morning runs don't seem so fun.
Well now that I've ranted to God knows how many people, maybe now I will do something about it...and next time you see me, just maybe I'll be wearing something other then my beige maternity shorts, or maybe not.

Saying goodbye to NICU buddies

2008-08-15T22:08:00.009-03:00

Saturday we said farewell and good luck to another family (Audrey-Jo) as they went home with their twin boys. We are very happy that they finally get to go home after 75 days or so, but also frustrated that we see so many people coming in and going home, while we remain stationary. A couple of weeks ago, my friend Robyn, who was Alyssa's neighbor in transitional care for a couple weeks also was lucky enough to go home. Since we've been in NICU 3 we've seen at least 12 families go home, and I can't even count the amount of babies that came and left so quickly in NICU 1 while we were there. Our day will come too. So in the meantime we just have to be happy for our friends that also had long, or short journeys in the NICU, and who have babies who are well enough to go home. I wish them all the best, and I really am happy for all of them, even if sometimes I seem a little bitter.

Since Alyssa's caffeine returned, she has been doing very well, with NO major apnea's. However the feeding has been really crappy up until yesturday. Most days when I'm in the car on my way to the hospital (usually the evening trip) I have a million things in my head that I'm going to write about, but last week were all depressing thoughts, so I thought I'd wait till we had a good day.

I was getting so frustrated last week. Alyssa had taken a full bottle August 11th like I mentioned before, but that was the best feed in what felt like forever. We were lucky if I could get one or two good feeds a day, and good means that she took at least 10 ml of milk by the bottle (56 mL is her full feed), or that she even seemed interested in breastfeeding. Everyday it was the same thing, I'd try, and usually have very little success, most the time she wouldn't even wake up for her feeds. She could sleep all day right through feeding time it seemed. I was getting worried. Her stools were very watery, her heart rate was very low, always sleepy even after trying everything to stimulate her, no big interest to eat...just very lethargic. I just felt like we hit a plateau. Meanwhile, every other baby in here is crying every 3-4 hours to eat like babies should be doing. I really am happy to hear about babies doing well, I hate to hear of a baby getting sick or having difficulties, whether it is my baby, or my friends baby. I just want MY baby to be doing well TOO.

I had some good "pep talks" with a couple of my primary nurse's last week and with one of the neonatologist fellows. Everything they say, I know is true. Alyssa is doing very well considering how sick she was. With her lungs being as damaged as they are, and to be on no oxygen, and for quite some time now, and also no diuretic for fluid is quite impressive. She was so sick for so long, and was so premature, that she just needs time. She can have all the time in the world, every day I see her, I am amazed at how far she has come. She is getting so close to reaching 7 lbs, probably even before the end of the week. That is a normal weight for a baby, who would have ever thought that this 1lb 14 oz little girl would be so big 3 1/2 months later. And when she is awake, she always seems so happy. I can't even tell you how much I love this little girl. Alyssa and Emily make me smile everytime I see them.

Yesturday, we had another "new to us" nurse. We've seen her in transitional care but yesturday was the first day we had her, and it was such a great day. Alyssa actually woke up for all of her feeds during the day, not crying, but looking around. She took TWO full bottles AND breasfed for at least half of a feed all in one day. I was super impressed. She also had her eyes checked, and she did fantastic for the examination with no desats, and didn't even need a soother to keep her calm. She still has Stage 1 ROP in her eyes, a little more then the last examination, but nothing to be concerned about. She also had a bath yesturday, so a very exhausting day for her overall. Hopefully yesturday was not just a fluke and then she continues to progress...back to the hospital I go.

Alyssa's caffeine addiction

2008-08-12T09:37:00.005-03:00

And the NICU ride continues...By moving to transitional care, I think we just expect that things will go smoothly and Alyssa will continue to progress until she is well enough to go home. But I have to keep remembering what the nurses and other Mom's told me week 1. The course of 25 weeker's is like a roller coaster ride, with your up days and down days...and things can change so quickly. Well, let me tell you, I've always hated roller coasters, I am not a thrill seeker and I try to avoid scary rides the best I can. Needless to say...my experience here makes me HATE roller coasters even more.

I really shouldn't complain because considering how much we've been through, and how far Alyssa has come...in the overall scheme of things, she had a pretty good week...however I am going to complain somewhere in this blog anyways.

Alyssa continues to grow really well, she now weighs 6lbs 2oz, she's tripled her birth weight. She really is a miracle, when I think back at her birth weight of 1lb 14oz, and Jessica was too for holding on as long as she did. Most nights Alyssa gains 50 grams on average. This week we started trying to nipple feed her more (remember this is the bottle). And she did so well, I was so happy when I heard that she took 46 ml from Keith without ANY major heart rate or Spo2 drops...and August 11th she took her first FULL bottle with Courtney!!! So exciting!! She continues to nurse 1-2 times a day, and doing fairly well, but I never feel comfortable that she's received a full feed so she is always "topped up" by gavage. This was the "up part" of the week.

Because Alyssa's apnea's have all been related to her feedings the past couple weeks, the decision to stop her caffeine was made last Friday as she really had already outgrown her dose with her increase in weight. The weekend she was not herself, she was having many drops in her Spo2 while sleeping in her cot for no real reason. She would drop as low as the 30's and take a long time to recover, when before if she did drop in the 70's she would recover rather quickly. It still is scary when she stops breathing and her heart rate drops with feeding, but I'm starting to get used to stimulating her so that she starts breathing again. But when she does this for no reason...there is no getting used to this. Yesturday was a really bad day. Many times during the day, she stopped breathing. At one time, she dropped 3 times within 10 mins, where she required blow by oxygen in her face to recover, as she was lingering way to low for too long. Her color was awful, she was pale, and at times looking very blueish, and SO limp. She felt like she had no tone at all when I was trying to stimulate her.

I've just really had enough of all of this. Are we ever going to go home, and will she be ok when we do go home?? These are the big questions that I wonder everyday. I am being silly. I know we will eventually go home, and that we will have to be very careful with Alyssa with getting any illnesses, it really just sucks. Alyssa's nurse yesturday was thinking enough was enough as well, so she had some bloodwork done, which surprizingly turned back normal, no infection which is wonderful, and her hemoglobin was 101, which isn't stellar, but not bad either, actually better then her last results. So they decided to put her back on the caffeine...good old Timmy's, I can't live without my caffeine either, how can I expect her too.
Cross our fingers...but since she's been back on her cafe latte, she's been perfect. She was her old self last night. She was awake and happy and feeding well, with no major dips in her oxygen or heart rate. She looked at me with the cutest little eyes as if to say "Mommy, what is all the worrying about, I am just fine". Well thank you for reassuring me Alyssa, I slept well last night. Hopefully she will eventually outgrow the caffeine, and everything will be ok. But yesturday it was not ok...I pray that this ride will now go up and stay there, or just stop already so we can go home.

Day 80 - 37 weeks....

2008-07-30T08:50:00.007-03:00

Well I've read over my second last blog...and I thought...hmmm if I was reading that and wasn't me or someone with a child in the NICU, I probably wouldn't want to talk to me in worry that I would say or do the wrong thing. Please do not take it personal if you have said something similar or if you do in the future, I think I was having a bad day. I really just wanted to stress the importance of handwashing around Alyssa, that I may be emotional, stressed, and cranky at times, and that I still like to be included in things although I may not attend. And for the most part, I would like you to hold Alyssa, it was mainly when she was less then 2lbs that I didn't want her being held by anyone other then myself. That being said...maybe my phone will start to ring again ;)

Alyssa is growing like a weed. She is just over 5 lbs now and actually has alert and wakeful periods of time before some of her feeds. She is a good size now, and many babies do go home at this weight, but there are still many other issues. Main one being feeding. She continues to be gavage fed for her 44cc's of milk every 3 hours through her NG tube (tube in her nose). In order to go home, she must be taking all of her feeds orally. She is getting better at breastfeeding, but not doing enough for a full feed, and she doesn't wake up for every feed. This week, she has been waking up for every 11am and 8pm feed, and the other ones are all touch and go. I am there for her 11am and 2pm feeds, occasionally her 5 oclock feed, but that will change when she is back at the sitter's, because this will be pick up time....and then I'm back for the 8pm feed, and occasionally the 11pm feed depending on how tired I am. So, I'm really missing a lot, which makes me feel guilty...but it is just too hard to be two places at once, with Alyssa at the hospital and Emily home. It will be SO nice to be home, but I am in no hurry because I want Alyssa to be doing great.

The second issue, which is related to her feedings...is her apneas. This is when she stops breathing, and her heart rate drops. She is taking the medication caffeine to help, but I think she will need to be off of this before she goes home. She is having less heart rate drops with breastfeeding in the past two days, but she often has a hard time breathing, and her Sp02 drops, and she takes a while to recover. She does worse with the slow flow nipple feeding, with her choking more. Although I am getting a little more used to these reactions, it is still very scary. I try to watch Alyssa more then the monitors, so I know when her HR drops before the monitors beep, so I can stimulate her quickly. However it is still just an awful feeling when you see your child become limp, and their color turning pale to blue...it takes me back to our last night with Jessica, so you can understand how this would upset me. The nurses continue to tell me that she will outgrow this.

Emily was born at 37 weeks, 6lbs 10oz...it's crazy that Alyssa is 37 weeks now. 12 weeks ago, this day seemed so far away. All babies in the NICU that have apneas, go through a 10 day period where they have to be "apnea free" before they will take the monitors off and discharge the baby. We have at least a couple a day right now. But they are becoming less severe.

Well Alyssa is turning into a little blondie, she has lots of hair in the middle, but the sides still aren't growing very well from where her IV's were located. She is a great cuddler, and still loves her baths. She doesn't cry a lot yet, mainly only if she's straining, otherwise she is pretty quiet. She is a pretty popular girl with visitors all the time from the staff and our friends and family.

Today my Mom and my aunt Heather left, it was so nice having them both here. I was very sad to see them go, the week went by too fast. My Mom and Dad have been here on and off since when I was put on bedrest. Any time they went home, I knew they would be back shortly within 1-2 weeks, or after the weekend. When they weren't here, my aunt Lynn was here, and she was a big help, she was here for 5 weeks, and Mom and Dad were here for over half of that. They have been a huge help. Help with Emily while Renae was off and while she was here, help with cleaning, meals, support, time, everything. So now I'm a little bit sad, because I know they are not coming once the weekend is over, or within a week or two. We do have to get back to normal eventually, but I will miss them. Even though I didn't see them a lot, because I was always at the hospital, it was still nice to have them here when we got home. I know they will come back anytime we need them, but they have lives in Fredericton too. I love them very much, and I am so grateful that they have been here for us since the beginning.

Jenn's rant #4

2008-07-29T08:46:00.001-03:00

Having a baby in the NICU for a long period can sometimes make you feel like you're cut off from the "real world". Shortly after Alyssa and Jessica were born, the last thing on my mind was making friends with anyone, I had a hard enough time keeping in touch with my other friends. I was there for my babies and to help them as much as I could, I didn't want to miss any time away from them in case something critical happened. But as time has gone on, if I can offer any advice to a new mom going through this experience... it is to make friends with the other moms, talk to them about your experience, find someone who has gone through something similar...your life is the way it is now, so try to make the best of it. These are the people that can really understand what you are talking about when you tell them about your first kangaroo care moment, about your baby starting on cafe late's because of apnea's, about the stench of the CPAP hat, about the neonatologist who is on at the time, about the yummy sweets in the Ronald McDonald room (and soup and rolls on Fridays!!), about the scare of infections and how serious they can be for premature babies, the scare of being on the oscillator...but also the relief when your baby makes it off of it...about all the premie problems; BPD, PVL, NEC, IVH, ROP, etc...

Friends and family are all great to listen, but they don't really understand, and you can't expect them too. They are great to help take you away from the NICU for the moment. Thank you to all our friends and family who have been there to listen and also talk to us about "normal" things as well.

Every thursday at 2:15 near the NICU 1 there is a "snack and chat", something new over the years I think. This is where parents can get together to chat and snack...go figure. And learn about all the different experiences people have went through. Sometimes you want to bite your tongue when you hear a story of a mom who thinks she's really had the worst luck in the world, when really her baby is doing great in the overall picture, but you still listen and acknowledge that her pregnancy or birth was not the "normal" therefore it is scary. Until you have an abnormal pregnancy or delivery, there is no reason not to take for granted the "normal" pregnancy and birth. I actually started writing this blog over a week ago, before I posted that last one. I was thinking some of the same things, and then just found it already typed up so copied and pasted it. I had many thoughts when I started the blog, but because it was started so long ago, I forget most, so let me introduce you to some of my NICU buddies instead.

I've made many friends in these snack and chats and in the Ronald McDonald room. The first person I met was Judyann, she has twins, a beautiful girl and boy. I was so hopeful when I met her my first week, because her babies were born earlier then mine by months but were also 24-25 weeker babies...and after many surgeries and ups and downs, they finally went home a couple of weeks ago and are doing well. The second mom I met was Georgina. She was probably one of the most thoughtful people I've ever met. She could have been having the worst of the worst days, but would always ask me how my girls were doing, and genuinely wanted to know. She has the cutest little twin boys (also born around 25 weeks and in the 1lb range)...and they also went home a couple weeks ago after several surgeries and a major roller coaster ride. These were the two woman, who I envied...because they both went through so much...and their babies were doing well, so I always looked up to them for hope on the really bad days, like when Jessica had surgery, and when Alyssa went on the oscillator. These were also the two people who I couldnt' look at for a couple days after Jessica passed away. I felt like our bond of micropremie twins was gone, and I was jealous...but I got over it, and we still keep in touch even though they are home. My second or third week there, I finally met someone who had a 1lb range baby at the same time as me. Jessica and Gerry, had their son Gabriel exactly a week later then my girls, at 25.4 weeks. We bonded immediately, and have been good friends since...I will be both sad to see them go and happy that Gabe is ready, when they move back to their home hospital. Jessica is probably the person I talk to the most in here, she is also extremely thoughtful and generous...we spend most of our time with our babies, and then we meet up at the desk for pump kits and chat about each others days...Now that we are both in transitional care, it's easier to see each other. Another person I met in the snack and chat who had a great story, was Julie, another great person to be around. She didn't have a micoprem, but she delivered her baby at home...in her bathroom, by her husband and prematurely!! Her stay was short in the NICU, but I think she had an impact on all of us, and definetly added to the fun in "snack and chats". Just recently we met another Mom of twin boys, Audrey Jo, who has been a great addition to the group, one of her boys were in the one lb range and the other in the 2 lb range, and both growing and doing well. This blog has really gone off topic from what I intended to rant about...it was so long ago that I forget...however, now you know a little bit about my little world here, and some of the people that have helped the days go by a little easier. If I remember my initial thoughts, I'll be back.

What we wish our family and friends knew about having a preemie/NICU/sick infant.

2008-07-26T00:20:00.006-03:00

I read this on a facebook site and also on the mothering.com discussion board and copied the lines that I could relate to for you to read. I apologize for some of the harshness, but there were moments that I had all of these feelings at least once. Just to clarify, I AM NOT thinking all of this everyday now, and alot of this may not have been the way I would have worded it...

•Please don't judge me or my choices(this includes my birth choices and choices made in the NICU). This was not my dreamed for pregnancy, and nothing is going the way I want it to.
•Please don't tell me all the horror stories you know about pregnancies gone wrong. It just adds to my worries. My doctor probably has done a very good job educating me about risks and outcomes. Once people knew I was having problems, I heard all about theirs, their family, their friend’s cousin’s neighbor and their baby who died/was brain damaged/missing an arm etc
• Please don't tell me how hard the last few months of pregnancy are or complain how horrible it was to be overdue around me.
• Don’t tell me about how lucky I am to not have to go thru the last month or two or three to four (in my case )of pregnancy.
• Don’t tell me how it’s ‘no big deal’ and everything will be fine because people have preemies all the time and they are just fine.
• Don't compare my preemie baby's death to the death of an older person as no big deal since "you didn't know her anyway".
• Call and ask if I want visitors. I wanted people to come see my baby, but I needed to know so I could be there. Most NICU's have a limited visitor policy, so I need to be able to do some planning.
• Please don't continually ask me when my baby will be coming home. I have no idea.
• Please tell me how cute my babies are and try not to go overboard on the "look how tiny!" stuff.
• Research is great. Educating yourself is awesome. Please do not act like you are an expert on the subject because you read something on the internet or know a friend of a friend. Each baby is unique and different, and as such my baby may not fit into what you have read. Please do not attempt to teach me about my baby.
• I appreciate that you had a close friend or family member with a baby in the NICU and you have seen a NICU baby before. I hate to sound harsh, but if it wasn't your baby you really cannot completely understand how I feel
• Don’t expect me to answer your call or return it within the first 4 weeks of my preemie's arrival.
• Don’t expect me for dinner today, Sunday, any upcoming holiday maybe for the next year. Now, because I will spend it with either my family at home or in the nicu. Later because your child may give my baby rsv and it could hospitalize her or kill her. Or maybe she doesn’t like the loud crowd. That being said, please don't stop inviting me to do things.
• Don't tell me how "lucky" I am to have a small baby...I didn't WANT a small baby...
• When you come into the NICU to visit my baby, focus only on my baby...don't peer at anyone else's baby. Privacy is nonexistent in the NICU, so we parents and visitors have to respect others' right to privacy and keep our eyes and ears on our own babies only.
• Ask me questions! There's a lot about preemie care and NICU life that people don't understand, not to mention questions about my baby's condition. Don't be afraid to ask me...most of the time I am willing to answer and explain because talking about it helps me understand it too, and if you understand more then you can be more supportive.
• Also if I am crying it isn't Post Partum Depression, it's because all my hopes and dreams for a healthy pregnancy, vaginal delivery and healthy baby have blown up, I've suffered a tremendous loss losing Jessica. I don't need medication, I need support!
• That said, mommies of Preemies/Nicu babies are at high risk for Post Partum Depression. Please keep an eye on me, without smothering me, and help me get needed support and treatment if PPD does hit me.
• If you made an appointment to visit, please be on time. I may have scheduled a pumping session around your visit, and your being late will mess this up
• Ignore the tubes and wires and tell me she is beautiful. Because she is.
• Please let me know if you are sick. If I get sick, I can't see my baby, so I don't want to risk it. If you are sick at all, please do not come and see my baby.
• Please don't tell me I'm being ridiculous when I'm fastidious about hand washing and keeping sick people away from my baby, RSV kills little babies like mine.
• Don't expect to hold a baby when you come over (especially soon after they come home). I may not want them out of my arms.
• Please don't preach to me. If you have not been here as the mother of a sick baby, you don't know anything about this.
• Please understand that while my baby is in the hospital that is where my focus is. Please don't expect me to come to social activities.
• I'm still a new mom. I'm hormonal. Please be kind to me, and give me lots of breaks for any bad behavior.
• I'm tired. Please don't say "be glad your baby is in the hospital" or anything like that. I am not sleeping well; I'm either up pumping or worried for my baby.
• Please don't ask questions I can’t answer, like will my baby ever be "normal".
• Please ask how I am, I may need a shoulder.
• Don't back away when I cry, it is very emotional to have a baby sick, and a baby who passed away.
• Please don't say clichéd phrases like, "if it was meant to be...", no baby is meant to be born early and sick, or die before they experience life.
• Please don't tell me a story about your friend's cousin who had a baby so much smaller than mine and tell me what a "good size" my daughter is and how she will be okay. Four pounds isn't a good size to me, it is still scary.
• Thank you for the congratulations but please don't pretend that everything is wonderful right now and I should be a glowing new mother.
• It is not easier to be a new parent to a preemie because I'm "resting and letting someone else take care of her." I want to be taking care of her. Waking up every three hours to pump is not restful, and it is much, much harder than waking up next to your sweet newborn baby to breastfeed.
• I'm not "over it" and I might not ever be. Try not to be awkward, change the subject, or roll your eyes if I still get emotional about my daughters births, death and NICU experience 2 years later.
• Unless you have also spent 12 plus weeks in the nicu or picu with your child. Do not tell me what I should do, what I should have done, how I should act or what I should tell you. If you're hurt because I didn’t give you details or blew you off, I have the rest of my life to listen to you and I may not have had that time with my child.
• Don’t keep pestering me for answers. Don’t say- But you said she was doing good. Guess what, that all can change in a second which is why they call it an emotional roller coaster.

Moving Day

2008-07-16T18:05:00.001-03:00

Yesturday was another big day for the Manuel clan. Alyssa was moved to transitional care, with very little notice, other then "we're moving Alyssa to transitional care today, and soon". OK, lol.

This really is a great move, this means she is doing well, and she is that much closer to going home. She still is really small, but on her way...Transitional Care (or NICU 3) is where the babies go once they are stable but still requiring help with feeding and growing before being discharged home. I had some mixed feelings about the move. First off, I was thrilled that they thought she was doing well enough to go, but then on the other hand, I've become rather attached to our little area in the back pod...but most importantly to our primary nurses. TCU has its own core set of nurses most shifts, but if there is only 2 out of 3 on then I may get one of Alyssa's primary nurses. All of the nurses are really great, but after being here for 65 days, we've become rather attached to certain people who have been there for us during the very difficult days and who really know Alyssa well. So again, happy and sad at the same time.

I'm wondering if part of the move had to do with me getting really upset the other night. I walked in a couple nights ago, and became very emotional when I noticed the baby who was in Alyssa's old spot was on the oscillator and nitric oxide. (I'm not sure if I mentioned this in another blog, but we moved Alyssa to Jessica's old spot shortly after she passed away, so that I wouldn't have to see another baby there.) This brought back some very bad memories...this is when Alyssa and Jessica were both their sickest...Alyssa luckily came out of it fine, but this is how I remember Jessica her last week with us. It was really hard to see. I cried, and had to close the curtain so I didn't see the equipment, but unfortunately it is so loud that you really can't tune it out. In TCU, it is much quieter because you don't hear the alarms on the ventilators and IV pumps, the noise is babies crying, which is nicer noise most times.

So we're all moved in, with a nice window view, and Alyssa has been doing well. I bathed her last night, and she loved it! She didn't cry once and had the biggest eyes staring at me, and then we dressed her in the cutest little "hoody sleeper", as most people know I love my "hoody" sweatshirts. I had a couple scares today when I was trying to nurse her. I am going to try really hard to breastfeed, but it all depends on how Alyssa is doing, and how my milk supply holds up. It went down a lot in the past month from stress, lack of sleep and poor eating habits, so I'm trying really hard to get it back up again. So anyways...she was feeding some, and then all of sudden she had a blank look upon her face and she wasn't moving, and I looked up at her heart rate dropping from the nice 145 down to 100 to 70...and here we go. Thank goodness her nurse was with me at the time, and she told me to sit her up to stimulate her, which worked perfectly within a couple seconds. Because she is so small, she doesn't really know what to do with the milk yet, so although she has learned to latch and suck, she doesn't quite know how to swallow, and this is how her little body reacts. This happened one more time with her heart rate dropping, then I decided to call it a night, to stressful for me. We'll see how it goes, my freezer is overflowing with milk right now, anybody have any extra space in their freezers that you would like to store breast milk in? Don't all jump at once.

That's it for now, time to pump...

Special Moments

2008-07-14T08:11:00.001-03:00

We all have special days, or just moments when we have such a huge overpowerful rush of feelings come over us...sometimes good and sometimes bad. Some of my biggest most recent moments were the following : on my wedding day when my dad walked me down the aisle and then seeing Keith waiting for me with watery eyes... looking at my positive pregnancy tests and knowing I was going to be a Mom (something I've dreamed of for as long as I can remember)...the excitement and shock of finding out we were having twins... seeing the look on my parents face as they walked through the door and saw everyone when we threw them a surprize 30th wedding anniversary party... running towards the end of the finish line of my first half marathon and seeing Jamie, Danielle, Emily and Keith cheering me on (and then my name being called as I crossed the finish line)... seeing Emily, Alyssa, and Jessica for the first time after carrying them for so long, and especially knowing that Alyssa and Jessica were ok since they were so small... seeing my brothers hold their babies for the first time and the look of "super proud daddy" across their faces...they're are so many of these happy moments, too many to write all of them. And the sad moments where I almost feel like I'm going to fall to the ground, or feel like I'm losing oxygen...like at my Grammie's funeral as we all walked down the aisle of the church while the bagpipes played, my first big break down, just looking at Jessica in the incubator late one night during the first week, and the biggest overwhelming moment was holding her that last day when I knew it was our last time together for a long time. These moments help to make us who we are, and I hope we all have many more happy moments then sad moments.

Today I had a happy moment. I called Courtney for the morning update on Alyssa, and she told me she wasn't on any oxygen...no ventilator, no CPAP, no nasal prongs...I was pumping and was so shocked, I dropped the milk on the floor. I couldnt' get to the hospital quick enough...Courtney was holding her when I walked in, I was SO excited to see her. And when I held her, and looked down at her little face...ALL of her face, with only a the feeding tube in her nose those overpowering feelings came over me, and I felt happier then I've felt in a long time. I fought the tears because I didn't want to cloud over my eyes with tears from looking at this perfect little girl. But it was hard too, because I can't look at Alyssa without thinking of Jessica. My heart really just aches sometimes with a constant changeover from happiness to sadness and full circle.
I was able to share my happiness with Danielle and Jamie, and they were both able to hold Alyssa. One of the exciting parts of having a baby, is showing them off to everyone, and letting them hold them, today was the first day that I could do that, and it was wonderful. So although Alyssa did go from the ventilator to the high flow nasal prongs, and then back to the biphasic CPAP, then to the regular CPAP and then shortly to the high flow nasal prongs again all within 1-2 weeks...she is doing ok, and I finally feel like she is going to be ok and I am starting to see a light at the end of the tunnel. Courtney said she may require a little bit of oxygen sometime...but that is ok. So I just wanted to share with you my special moment, as little as it may be, it meant the world to me. I look forward to many more of these moments that really make life worthwhile.

Where there is a will there is a way

2008-07-08T10:33:00.001-03:00

Let see, what happened this week. Oh yes... Alyssa pulled her breathing tube out!! She was some determined to take that tube out and stress Mommy and Daddy out. We were just getting to relaxed and everything was going smoothly after her infection healed up, that she decided to cause a little bit of drama. And we were getting so close to the "planned" extubation. I guess this gives us a bit of warning for down the road that she really will have a mind of her own...there was a will to pull that tube out.

Courtney (one of Alyssa's primary's) was on during the day, and was doing one of her checks and noticed the endotracheal tube was much longer then it should be, meaning Alyssa gave it a good pull. So the call was made for RT to come over (I'm glad we werent' there at this time), and they completely removed the tube and watched her breath. Apparently she did quite well initially, so they skipped the CPAP step and went straight to high flow nasal prongs. She did well for the first day, it was so nice to have a cuddle without all the ventilator tube, however it was short lived. She loved the freedom of being able to turn her head from side to side without any fuss. She started getting a little stressed after the first night and day, and was having some dips in her heart rate and also in her Spo2, so they increased her flow initially up to 7 from 4, but then that didn't do the trick, so they switched her to the CPAP. I feel better with this because I didn't think she was ready for the high flow at the time anyways, but you never know until you try it. Yesturday was a great day with Sharla. She was on room air most of the day and her feeds started going up again. (They had to stop the feeds after she self-extubated to prevent any further stress for the first night....and then started them back up, and then when switched to the CPAP the feeds were stopped again...so hopefully now we can just keep going, so that she can get off of her IV). She is finished her 7 day course of antibiotics, but still needs to get poked all the time to keep her feeds going. I think she needs to be over 30 mL milk before they can discontinue her lipids and TPN with her weight. She weighs 3lbs 12oz!!! So close to 4lbs...She looks really good....I am SO happy to see her growing and doing well, but it also makes me very sad that we are missing all of this with Jessica...here comes the tears. I'm still not ready to go there yet, it just really really hurts, and I don't talk about it. The nurses say how well I am doing, and I am doing well, because I keep it buried very deep right now. As long as I don't talk, I feel ok. But I know I can't do this forever, so I will be starting with a support group soon, but not now.

Ok. So, Alyssa's second tests for her eyes was done yesturday and again, no disease and no concerns...more happy news.
Keith and I haven't been in to the hospital as much this week since Saturday. We were fortunate to be given a cottage out at Queensland beach for the week. The couple who owns Colwell's by the Sea donated two cottages to family's at the IWK for a break away from the hospital. They tried this 2 years ago and are hoping that it will continue on. It is very kind of them. So the NICU draw families names who they think would be able to go, depending on feeding schedules and vehicles, and we were one of the lucky ones. Because it is over 40 mins away I can't come in twice a day to see Alyssa, which has been SO hard, and my visits have been short because we've had Emily with us and we really wanted to spend some time with her at the beach and cottages. She loves it there, she has so much room to run around...and loves the water...not so much the sand though. She is a very girly girl and does not like getting her feet dirty. So thank you to Ann and Tom Murdoch and the IWK for giving us such a great week at the cottage and beach.
Tonight Emily is having her first sleepover with her sitter Renae. Renae is like family, so hopefully she'll do ok. This way we can go directly to the hospital tomorrow morning and not have to worry about dropping Emily off, and plus we'll have a little time in the morning where we are not so rushed.

Time to go to the hospital and have a nice long cuddle that I have been missing SO much the last two days...Courtney was kind enough to take her out the two nights she worked for a cuddle and a story. I love our primary nurses!!!

The dreaded phone calls

2008-06-30T08:17:00.002-03:00

Alyssa is over 7 weeks old, 51 days in the NICU and almost 33 weeks corrected age...She really had a great week last week. She was out for skin-to-skin every day, and even twice a day sometimes. I still try to get to the hospital twice a day, but it's been harder lately because of Emily. She's going through this phase of not wanting to go to sleep, and it's usually well past 9 before she's settled. So for the most part I go after this, but other days it's too exhausting...but I feel guilty when I don't make it in.

In the middle of last week, Alyssa's central line called it quits. This is a line she has had since the second week she was born to administer most of her medications and her TPN feeds. This line passes from a vein in her arm all the way up to heart to allow concentrated solutions to be infused with less complications. She was actually lucky to have it last for so long without infection or falling out. Because she has been doing so well on her feeds, they decided to keep it out, and put in a peripheral IV to continue her feeds for the short term, since they thought she would probably be strictly on milk soon enough. She was up to 29 ml of milk every 3 hours and doing great...She was free of all IV's for one day. But then we get one of those "dreaded phone calls" in the evening....Alyssa got another infection. We're so lucky to have excellent primary nurses. Charlotte and Sharla started the ball rolling immediately when they noticed Alyssa not behaving like herself, and sent off cultures for her secretions, had blood work done, and started her up on antibiotics ASAP. Then less than 12 hours later, after getting a blood transfusion and some antibiotics, Alyssa opened her eyes up and was behaving more like herself. Keith and I were shocked to come in that morning and actually see her ventilator settings lower and Alyssa breathing on room air. We expected her to be having more difficulty so were pleasantly surprized.

She will be on the antibiotics for a total of 7 days, and continues back on TPN and lipids plus her milk. They stopped all her feeds when she got sick, so restarted again at 5 ml. Today she is up to 10ml, and this increases again by 1 ml every 6 hours as tolerated. Her RR has decreased to 20 breaths per minute, she normally breaths another 30 on top of this. So if all goes as planned, another couple of steps before extubating. Dr. H is the neonatologist on for the next 3 weeks. She is the Dr. we met with in my hospital room when I was 23 weeks to discuss survival rates of twins born that early. She is very sweet and kind, and told us that they would like to get Alyssa's rate down to 10 before extubating, however if she pulls the tube out herself, they will keep it out and see how she does. This is a little scary to me, as I really don't want anything happening that isn't planned, but she does love to grab that tube, and she's very strong.

For anyone that is wondering, we did warm up to Dr. G by the end of last week (we only went to a couple of days of rounds with him...because of Jessica). It's unfortunate for us and also him that he just happened to start his rotation when he did. Although, I really didn't like how cold and harsh he seemed to be, I probably wouldnt' have liked the situation no matter who the neonatologist on was.

So that's the update for now...Alyssa continues to grow, and thank God this last infection was nipped in the butt quickly, a little set back, but we're still ok.

I feel another rant coming on in the next couple of days...

The big baby on the block

2008-06-24T13:14:00.001-03:00

Last time I gave an update on Alyssa, she had just started on dexamethasone, the steroid to help decrease the inflammation in her lungs. It did help, and very quickly. Within 24 hours, her settings were decreased on the ventilator, to very low pressures, and her RR (respiratory rate) went from 65 to 30. However as the medication was weaned over the week, her rates went back up to 45 and have remained there for another week or so before they finally went down to 40 as of yesturday. The RR is how many breaths per minute the ventilator is giving her. She is taking some breaths on her own, but not enough to be extubated (taken off the ventilator).
I mentioned BPD in a previous blog, which is bronchopulmonary dysplasia - abnormal tissue growth caused from the inflammation and damage to the lungs. BPD usually occurs with premature babies who had respiratory distress syndrome at birth (requiring mechanical ventilation), and are still on a ventilator several weeks later. The crappy thing with BPD is that these babies need the assistance of the ventilator because the inflammation makes it difficult to breath, however this assistance of extra oxygen and pressure to the lungs is also what is preventing the lungs from healing.

Of course everything we've read suggests that severe forms of BPD are rare, but as you all well know if you've been reading this blog, rarity is more common for us then not. And Alyssa has bilateral cystic BPD which is the more severe type. How severe I really don't know. I'm planning to meet with Dr. G this week before his rotation ends to find out his input on the situation. Today was the first day that Keith and I both attended rounds since we found out about Jessica being so sick. It wasn't as bad as I thought it would be, but I think that's because there was a lot of people that I didn't recognize.

BPD can cause mortality and morbidity, however in MOST (80%) cases there is no long term consequences, and although some babies may go home with supplemental oxygen, usually after two years it is no longer needed, and after 7 years the baby has completely normal lungs. The other 20% of premies with BPD may show some developmental delay at 3 years...Alyssa will be the 80% that does well in case you're wondering ;)

So, they are trying to wean her very gradually off the ventilator and let her do as much as possible. They may give her a second course of steroid if she is unable to wean off on her own, but like all medications there is side effects, like a slower growth rate, decreased immune response, therefore more prone to infections...and also some studies have shown an increase in CP when used at higher and longer doses. So wait and see...

Now for some good news, actually great news. Alyssa reached 3lbs yesturday. She is no longer the smallest baby in the back pod. There are two other babies who are in the 1lb range (not twins), so she is the big baby. She had a very busy morning yesturday with tests. She had her 4th cranial U/S to check for bleeds, and yippee!!! her scan was normal. She also had her eyes tested for ROP (retinopathy of prematurity). Premature babies who have extra oxygen and other problems may develop abnormal blood vessels around the retina which can damage this area of the eye and possibly cause it to detach from the wall of the eye. Scary....however....yesturday was a good day, and this test came back fairly normal as well. It's not to say that she won't have problems down the road, her next test is in two weeks. But on the positive side, the first test they only charted "immature" eyes, which I'm ok with.

Ok, I think we're all updated. Alyssa is feeding 12 ml of milk every 3 hours and it increases by 1ml every 12 hours if she tolerates it ok. She has been doing well, and when I call tonight, hopefully she will be up another ml. She poops and pees and loves her cuddles out of the incubator with both Mommy and DAddy (today for the first time without Jessica for Keith). She usually gets close to room air when she does kangaroo care.
Our big goal now is to get off the ventilator with very minimum blips on the way. Keep praying.

Jenn's rant #3

2008-06-22T21:42:00.000-03:00

I don't really know where to begin, or even what to write about, but feel like I should be saying something..anything. I'm feeling a little lost for words, but I'm sure they will come as I start to type. One day I feel ok, and I feel strong, and think that things happened for a reason and Jessica is at peace. And the next day, or even the next hour I am sad, depressed and angry. I feel like the memorial service was so long ago, and I don't like that feeling. Every day I come from the hospital I go through Jessica's pictures, and watch the video so that I am spending time with ALL of my girls. I am still wearing Jessica's hospital bracelet, I can't seem to take it off yet, nor can Keith. I still carry around her blanket with me, although I've been better to not have it every second of every day, like a couple days ago. However I do need it to sleep with every night. I haven't been able to finish the diary that I started in the NICU for Jessica about her progress. I still feel like she is here and sometimes talk about her like she really is...so please ignore my "crazy talk".

I spend my nights thinking about every possible thing that could have been different during my pregnancy, or during the month she was with us. And I still wonder...why us? It's awful to think...but I see these Mom's out smoking daily, and then coming to see there baby's in the NICU to cuddle and nurse, and they have good size babies...why are they so lucky... and us so unlucky? I never smoked, I never drank, I ate relatively healthy, exercised up until I was put on bedrest, drank all of the high protein drinks, pumped milk for my girls...and yet this is the fate we were given. It seems unfair to me. It seems unfair that any child should leave before their parents. That is not the way any of us plan for it.

I wonder whether or not if the girls came two weeks earlier, like they were trying to at 23.5 weeks if things would have been different. If all of Jessica's problems that they say happened in utero could have been prevented. But then both girls may have had major bleeds from prematurity, or may not have survived birth altogether. And Alyssa could be doing worse if she were born two weeks earlier. I guess we'll never know, which makes it so hard to deal with thinking about the "why's, the what if's, and the how come's". I think out loud a lot now.

People keep telling me how strong I am, which really couldn't be further from the truth. I am a very good actress. In public I put on a good show, and sometimes I even believe that I have strength, but I break down a lot in my own time, and hold it together for every one else. Keith and I are very fortunate to have Emily, and also Alyssa. But it doesn't make things easier. One does not take away the grief we feel for Jessica, they are seperate. So if you're ever looking for the "right" thing to say to either one of us...it's definetly not "well at least you have Alyssa". If anything, it makes it harder that Jessica had an identical twin sister. I am reminded every day of losing Jessica when I walk into the NICU, and see a baby that looks exactly like Jessica did. And as she grows up, we'll constantly be reminded on how beautiful Jessica would be too. Since my twin cousins were born, over 17 years ago, I always hoped that I would have twins. And I did, but I wish it lasted longer. It is hard seeing other twins. I am very jealous, because that is what I am suppose to have, someday hopefully it will get easier.

For the moment, I am back to taking one day at a time. Keith and I have made sure that we've been there for each other. It's hard because we each have our feelings and moments at different times, but we do our best to be there, or give space as much as needed. Our family and friends have been wonderful throughout all of this. The support that was shown at Jessica's memorial service was amazing, and I thank everyone for being there for us. We are so lucky to have such amazing people in our lives. The best thing for us, is to know that we can talk to you about Jessica, we enjoy telling people about her, and showing pictures. By letting us cry when we need to, and not pretending that everything is ok...because it is not...this is what will help us get through this.

I hope that I haven't scared other mom's with all my blogs, because our situation was very rare. I've heard many positive stories of women with TTTS, and many positive stories with babies born at 25 weeks, and weighing less then 2 lbs. Just remember when things are really bad...all you can do is take one day at a time. And trust that your faith will help you eventually get through everything.

Baby Jessica was given her wings

2008-06-14T11:11:00.004-03:00

It is taking me all of my strength right now to write this. Never in a million years did I ever think we were going to lose Jessica. It was Tuesday morning during rounds when everything came crashing down. Monday after meeting the new neonatologist we knew she was sicker then we thought...and unfortunately the U/S results we were waiting to hear about were not good news.

I arrived late to rounds, Keith was there, so I missed alot of the discussion, and even when I was there, I was sitting outside the circle and didn't hear very well. All I remember hearing is the beginning discussion of Jessica's cranial U/S and the Dr. asking Keith if he knew about it, and he didn't. He asked Keith where I was and Keith pointed to me behind him. The doctor immediately interrupted rounds to have a family meeting. Alot of our discussion is still a blur to us, so we were explained many times of her situation. Her abdomen U/S showed no air/gas which she should have had by this point after surgery (the air before was found outside her bowels which is why they had to do surgery). Her blood pressure dropped immediately after her last dose of hydrocortisone wore off, which not only could she not maintain her blood pressure but also a sign that her adrenal glands were not working as they should. Dr. G explained to us that she had a 95% chance of passing away even if he did all heroic measures and tests possible to keep her alive, within a week. I personally think she would have lasted longer, but I'm not the doctor. And if she did survive that week, she would get sicker and may be in pain. On top of this, her cranial U/S showed a grade 3 bleed, which is severe. This is on top of her PVL discussed in an earlier blog. We were told that even if she miraculously made it through everything...(her lung disease, PDA, NEC) she would have no quality of life. And if she could get through her NEC issues, (which most likely she wouldn't) in her bowels, she would most likely end up with something called short gut syndrome (or something like that) where she would never be able to leave the hospital because she would be fed through IV, and eventually this would damage her liver. Although she possibly could have lived like this for a couple of years, she would eventually pass because of her liver. So the decision that I feared from the first day knowing that I had TTTS, the decision that no parent should ever have to make, became reality, and Keith and I had to decide if we continue treatment or not.

Keith and I kept thinking of that 5% chance. And this is not even thinking of her quality of life, but 5% chance of even surviving, we wanted to believe she would miraculously beat all odds, so we requested to meet with Dr. J for a second opinion, who was Jessica's Dr. for the past 3 weeks. Unfortunately she was in Cape Breton on Tuesday, however we were able to talk to her on the phone. After discussion with Dr. G, she told us the same information, less technical and in a nicer way...and without telling us exactly what to do, she really did help make up our mind. She knew we would never want to have Jessica in any pain, or to pass away suddenly without a chance for us to say goodbye, or to prolong her life just for selfish reasons to have her with us longer...she knew us, and knew how much we loved her.

Our second family meeting, we really didn't have any decisions made. I asked the Dr. if he thought she would be fine one more night, because we needed more time. I dont' remember exactly what was said, but not what I was hoping for...he went on about all this medical stuff and bleeding out of here and there, and all the possibilities that could have happened, which made things so much worse then they really needed to be. I just needed someone to say..."Yes she'll be fine one more night." Thank God for our nurse Sharla. She was the exact person we needed that day, and I don't think we could have got through the day without her. She explained things to us so well. She even switched her shift for us so she could be with us the next day. Alyssa's nurse was also who we needed working those couple of days, Charlotte, who has really been there for us since the first week the girls were born.

Wednesday we had another family meeting...our brains kept telling us what the right decision was, but our hearts kept telling us something different. Dr. J came to see us as soon as she got back from Cape Breton, and only after talking with her, I felt we really only had one decision...and it was SO SO hard to make. We told the doctor that we would let Jessica go, it was so difficult to get the words out. So she was kept on her pain medication and the orders for DNR (do not rescusitate) were charted. Charlotte, one of primary nurses had said they could arrange to have both girls together if we liked, and of course we wanted this.

I really am trying to make this as short as possible, but I feel like I need to tell everyone exactly what happened, to hopefully allow myself to believe we really did make the right decision. Even after we made our decision, we still struggled. We were told that once Jessica was switched off the oscillator to the regular ventilator she would most likely not survive long. We were also told that once her tube was taken out, although most babies hearts are strong and continue to beat for a couple hours after words...that hers most likely would not because she was sick and her body was not showing any signs of healing on her own. The one thing that I found really helped me...was when Sharla told us that it is Jessica making the decision, with her body not healing. She was ready to get her wings, without making all of it lay on our hands. If she only had one problem, it would have been so different. But she had so many, she really had all the possible problems a premie could have.

Jessica gave us the day with her. That was her gift to us. We held her in our arms all Wednesday, and Alyssa also spent the afternoon in our arms with her. They held hands, they will always be twin sisters, and she will always be a big part of our lives. It was so hard to see all of her vital signs looking so good when she was on the regular ventilator. But we knew the inside of her wasn't doing well. That evening Jessica came into our parent room with us, and we cuddled with her for the last time on our bed, she was perfect. This was the first time I really looked so closely at her. She had all of her little parts perfectly shaped, her colour was so good, nice and pink, her body was swollen from being on the paralyser medication for so long, but she was finally moving for us as they stopped giving it to her when on the ventilator. Her little ears were not fully developed with cartilage so they were a little flat....her big toe on the right was perfect...no more bruising. Her skin was so soft, she had such dark eyebrows. She was, and always will be perfect in our hearts.

Thursday June 12, 2008 Jessica was one month old, and her tube was taken out shortly after midnight.
He was wrong...she did have a strong heart...and it continued to beat for 4 more hours. And then finally our little girl got her wings. After only a month she brought us more joy then you can imagine, she was a beautiful little girl, and I know she will be helping Alyssa through all of this. I don't think I can write anymore now. Please know that we love you all for your support and prayers during this really difficult time.

Four weeks old

2008-06-09T21:43:00.001-03:00

It's hard to believe that Alyssa and Jessica were born 4 weeks ago. It feels like they've been in the NICU for much longer. It's amazing, and scary how much they've both been through this month...and still fighting. I don't know to many people who can go through everything they've been through and still look as cute as they do.
Today was change over day. Every 3 weeks the neonatologist and their team (usually involves a clinical associate who is a doctor trained overseas normally, or a nurse practitioner) rotate, therefore the parents and babies have to get used to someone new. Which could be both good and bad, depending on your relationship with the previous doctor I guess. We really loved Dr. J as I've said many times before, she made me calm. Dr. G is on for the next 3 weeks, and he's a little more blunt then I'm used to. Every one just has there own ways of doing things, and I'm not quite used to his yet.

Friday I mentioned that Jessica was coming off the oscillator...well it was short lived, because her C02 increased to the high 80's very quickly. The nurses did 3 blood tests for her gases, because no one wanted to believe that it was accurate. Therefore back on the jiggler she went, and she was getting more of the paralyser medication as well (rocuronium I think). She's been "stable". I always found comfort in stability as you'll remember from my pregnancy. It always seemed if things were stable, things were good. After today I'm not so sure. It has been 4 weeks, and a couple weeks since Jessica's surgery, and Dr. G very bluntly told me how sick she was in rounds today, and how her body is not showing any signs of healing on her own, and that the "machines" and medication were doing most of the work. I guess as nieve as this may seem, I never really thought of it like that. I keep thinking one day at a time, every day we get through, the better. Now I'm scared, because although she is "stable" she really isn't getting better. I think she will, and I hope and pray she will, but his bluntness today really hit home. And it's a little embarrassing to be crying in the middle of rounds when the entire team is around you. Today Jessica also had an abdominal U/S and a cranial U/S that we'll probably find the results for tomorrow. The cranial U/S is not going to affect treatment now, we just wanted to know if her PVL (periventricular leukomalacia) is progressing or staying the same. Please pray that tomorrow we'll have some good results for both U/S's.

Rounds with Alyssa this morning seemed a little more optimistic. Although she has some severe lung damage (BPD) like Jessica, they feel her infection is improving, although very slowly. They started her on a steroid today, which is suppose to help decrease the inflammation in the lungs, and help to wean her off the ventilator eventually. Dr. G said that hopefully we'll see an improvement in 24 hours which will be 1pm tomorrow.

So today was a little bit of a bummer day, and I hope my feelings of sadness were not obvious to Jessica or Alyssa. Keith and I thought we needed a lunch away from the hospital, so we went to My Father's Moustache and sat on the patio for a couple drinks and food (yes I pumped and dumped). We needed it today, but definetly not something we can do everyday...I forgot how expensive eating out was.

Emily is doing well. She always cheers us up at the end of the day when we go to pick her up. She has been so good through all of this. It has been really hard on me though, especially when we were staying at the hospital, because Mom and Dad spent the most time with her, besides at childcare, so Emily started calling my Mom and Dad (yes Dad too) "Mommy", I had to keep saying, "Emily, I'm Mommy". But now that we're home again, it has been better. She just recently started to cuddle with me, and although I'm not suppose to be lifting for another 2 weeks, sometimes I just have to pick her up in my arms and hold her...I need that more that the healing of my incision I think.

That's it for now, I apologize for my very tardy thank you notes, wedding cards (Michelle), birthday cards (Tammy and Danielle), and graduation cards (Kelly)...better late then never right??

Off the oscillator...

2008-06-06T12:41:00.001-03:00

The IWK telethon raised over 5 million dollars last weekend, thanks to everyone who contributed!!
Since then, Jessica and Alyssa have remained relatively stable. Alyssa was taken off the oscillator on Tuesday and put back on the regular ventilator. She was doing well for the first 24 hours, so I was able to take her out for kangaroo care on Wednesday. There is no better feeling then holding your baby against your chest and seeing them so calm and happy. She's been opening her eyes a lot more lately. Yesturday she was looking all around at Keith and I, so nice to see her looking in our direction. With good news, of course more bad news. Another X-ray was done recently, and her right lung which had collapsed and was getting better, has re-collapsed, and is completely full of secretions. She has thick yellow gobs being suctioned every 1/2 to an hour, and chest physio being done regularly which of course she loves (no, she hates)!! Poor thing...she can barely breath with her tube getting all filled up. Last night I thought I was going to have a heart attack as her oxygen saturation in her blood dropped to 15 % as the nurse was bagging her (normal is between 85-95%), and her color was extremely blue. She is still on lots of antibiotics for the pneumonia, although the neonatologist mentioned today that if major changes are not noticed on X-ray by the end of the weekend, they may have to look into dysfunction with the actual lung...hopefully not, and the infection will be better soon.

Jessica has also been stable, however since my last entry, she was put on the oscillator because her CO2 was extremely high. She didn't get as swollen as Alyssa because she wasn't on the paralyser medication constantly like Alyssa was, she just gets it as needed. Today they are going to try her on the conventional ventilator to see how she does, but warned me that she could go back on the oscillator. She's still on a lot of medication for her blood pressure, which worries me, because she needs a lot of perfusion to her bowel area to heal, it would be nice if she could keep her BP up on her own. We had a chat with Dr. J the other day about the "overall picture" of Jessica which was very upsetting. In rounds daily, the team goes over each system of the body individually...so I felt I needed to hear the whole story, which I had an idea about, but you can still never quite prepare yourself for. Like Dr. V had told us a couple days ago, because of Jessica's PVL, she has a 75% chance of developping CP, and as Dr J told us, the NEC can actually worsen these numbers. She told us she is very sick, with her PVL (brain damage), BPD (lung damage), NEC (dead bowel tissue), and other issues that are there, but less serious as the last three (and all mainly as a result of the TTTS). SO...she HAS to and will fight this NEC which is very possible, but a long road ahead of us... her bowel WILL heal, and because she's been so unlucky to get every possible preemie problem you can develop (even when "the book" says only a 5% chance of developping NEC, and 5% chance of PVL, etc...)....she will be the lucky 25% to either NOT get CP, or get a mild form if any. This is my positive thinking, which took a good couple days to get here. After meeting with Dr. J...initially all I could do was cry and picture the absolute worse, because she talked about if Jessica ever got an infection like Alyssa, she would most likely not survive, and if she did could be very disabling for her in the future and Keith and I may have to make decisions about continuing treatment. I dont' think I could ever stop treatment...because your really don't know what the future will hold. The Doctors have to give you all the information, but it doesn't mean that statistics are always correct. I've met other mother's here, two who were in my situation over 2 months ago. Both mothers delivered around 25 weeks as well, and had 1 pounder babies, and have been through a lot...they don't know what the future will hold for their babies, but right now, they are feeding, have had multiple surgeries and look like "normal" babies who they love like crazy. I would never love any one of my girls any less if they had any type of disability, I just want them to have happy good lives. Every day I love them even more.
Time to go back and see them, and see how Jessica did off the oscillator.
Please keep praying!!

Jenn's rant #2

2008-06-06T12:30:00.000-03:00

I feel really bad feeling this way, because I don't want to make another mother's concern seem unjustified...but it is really frustrating to see so many babies come in and leave within a couple of days, while my babies continue to be sick. One night we actually saw a father walk into the NICU with his baby in his arms wrapped up (weighing probably over 8lbs), and no other team members other then a nurse around, and he casually put the baby in an incubator. That baby was gone the next day, lucky boy. And then when you see mother's come in and cry because they can't take their baby to their room that day because they need some phototherapy or something like that...this is a poor me moment...but I can barely hold my babies, and everyone around me seems to be able to take their babies in and out of the incubator as they please. Everyone is in here for different reasons, and I understand that no one wants to be in the NICU, but it would be nice if they could put all the micropremie babies together and all the "big" babies together, so mother's like me don't feel so jealous of the other mothers cuddling with their babies, or even better...taking them home after a couple of days.

I've been told by some of the nurses that I may get to a point where I don't like seeing other pregnant women, because of all of our complications...I haven't been to that point, so please friends and family please continue to share with me your good news!!

That's all I have to rant about now...

IWK telethon

2008-05-31T14:50:00.000-03:00

Hi again...
I don't usually ask people for anything that has to do with money, however many people keep asking me what they can do to help...This weekend it is the 24th annual IWK telethon from 7pm tonight till Sunday at 6:45 broadcasted on CTV. The equipment, such as the oscillator that Alyssa is on, and even the incubators are extremely expensive, and have to be replaced after so many years. So if you have a couple dollars, please help support the IWK, they do amazing things here, and it's a great charity to support. For more information visit: http://www.iwkfoundation.org/

and the roller coaster continues...

2008-05-30T17:07:00.002-03:00

I would have to write a couple times a day if I were to really keep you updated on the changes that take place in here. Since my last entry, Alyssa became very sick. Just when we thought one day she was getting better, she took a turn for the worse and became extremely sick, Tuesday night, early Wednesday morning...She was septic, meaning infection in her blood, Her oxygen requirements remained at 100% with very high pressure support to keep her lungs open. We received a call Wednesday morning at 4:30 to notify us that she was being put on an oscillator, which is a machine that sends high frequency breaths at less intensity then the ventilator, in hopes to reopen her collapsed right upper and middle lung. I think this was also the time they called up to tell us she has an air leak on her left lung, or maybe that was the morning before. Her entire little body vibrates, so basically she is breathing like a hummingbird as Dr. J says, we love Dr. J :). She has to be on medication to keep her paralyzed while she is on the oscillator, so that her breaths don't interfere with the oscillator and so she doesnt' become to agitated. Her blood pressure was very low, so they had her on 2 other medications to control that. So basically she was on full support of everything to keep her alive, we were very very scared on Wednesday, especially when Dr. J had tears in her eyes talking to us about how sick Alyssa was. How am I suppose to be strong when Alyssa's Doctor is upset? However, Keith and I both kept our strength and prayed, and prayed and prayed some more. If her oxygen saturation were to drop, there wasn't a lot of help they could give her. Dr. J told us she has grown very attached to my little girls and not to give up hope (which we never did, and never will), and although it was very close, she told me she wasn't telling me to "prepare myself" YET. Luckily I am writing all of this in the past...there is no way I would have been writing this update on Wednesday. Within 48 hours or so, Alyssa started to fight back, and her oxygen requirements decreased, her blood pressure started increasing to the point where they could wean the medication, meaning her heart and little body was doing some of the hard work. People don't realize how strong these little babies can be. With Alyssa it was such a shock to everyone on the unit that she became so sick, because she was doing so well for the first two weeks. At the moment, she is on 30% oxygen, they've decreased some of her nitric oxide and some of the settings on the oscillator. Because of all the fluids/meds, she has been given this week, she is full of edema (lots of swelling over her little body), she looks like a cute little marshmallow over her abdomen, and her eyes are so swollen she can barely open them. Now they are trying to take her off the paralyser meds to see how she copes.

Will all of the oxygen she was on, there is a risk of having a bleed in the brain, which is very scary and another fear we had...Today we finally had some good news...no bleed, and although it will take time, Alyssa is trying to fight off this infection, and is heading in the right direction. Once she is able to move more, the fluid should start to come off as well.

As for Jessica, the poor little thing isn't having many breaks. Her belly started looking more distended yesturday, so an Xray was done. They found more air in her belly as they did the first day she was born, and made the decision that an exploratory laparotomy(surgery to open up her abdomen and take a look around) had to be done to find out where the air was coming from and then to pull the piece of bowel out that was damaged in hope that it would heal. Dr. Rob told us that he wanted to do surgery that day because she was stable, and could get unstable very soon. All the OR's were too cold for a micro premie like Jessica, therefore they had to bring the OR to Jessica,and surgery was performed in NICU in an isolated room. Surgery was a lot longer then we all thought...there were many more complications then initially thought...instead of just having one isolated damaged area of small bowel, there was multiple areas, and you can't start pulling out the bowel everywhere, therefore they decided on two major areas of damage to pull out, and hoped that all the area in between would heal on it's own inside the body. The first area was around 18 cm from the stomach, which is much higher then they like, they prefer the damaged area to be closer to the larger intestine...which is where the second piece is pulled out. Her diagnosis is called NEC...and maybe next time when I'm less tired and after I've read on it more myself...I can explain it better. So, we hope, and pray that she has enough small intestine to survive, we won't know for a while until healing starts to take place on the outside. It will be a very long process when feeding is able to begin, and I'll explain that more down the road, when we get to that point. Dr. Rob told us the 48 hours after surgery are critical to see how her little body handles everything, especially her lungs and heart. So far, she has been stable, and was stable during the surgery.
I know a lot of people are reading this, some family and close friends, and other people who know us, but maybe not really well...if you have an extra couple minutes in your day please say a little prayer for the girls. We had the girls baptized on Wednesday when Alyssa became very sick, it was a small little ceremony with Keith and I, the nurses, my parents, Father Walsh and the Chaplain Elaine. Jessica's godparents are my brother Randy and my sister in law Tammy, and Alyssa's godparents are my matron of honour and best friend Heather, and Keiths' best man and good friend, Trevor. Once the girls are out of the hospital we'll have a more formal ceremony, we just wanted them to be blessed to help them through all ups and downs of the NICU. Also for anyone that has been trying to get a hold of us, we've been staying in a parent room here in the hospital since Wednesday and will be here until Monday to be closer to the girls, our cell phones are not on in the hospital. You can leave a message at our house, and we'll try to get back to you when we get a chance.
Thanks to everyone for thinking of us and praying...We need to have a huge party when these girls can come home.

1 step forward and 10 steps back

2008-05-27T23:07:00.001-03:00

Things are not stable, they are not good at all. Last night, Keith went in to see the girls after work (his first day back), and noticed Alyssa's heart rate in the 190's, and her color looking greyish and very lethargic, she's normally quite active. So he talked to the one of the nurses who took a look at her and had the doctor come in to assess. She had lots of blood work done, Xray's and a transfusion because her hemoglobin was low. Her right upper lung collapsed and they diagnosed her with pneumonia so started her on a general dose of antibiotics. All of this came on very suddenly. I was with her all day and her oxygen level was between room air (21%) and 25% and heart rate around 170. Alyssa was pretty stable for 2 weeks...and then this...We call everynight before we go to bed for an update on the girls. Alyssa's O2 requirements kept on climbing to the point where she was on 100% oxygen. We got a call from the Dr. at 12:30 asking for permission to do a spinal tap to rule out meningitis (which they did, thank goodness), then he called back at 4:30 am to let us know they were going to start her on nitric oxide to help increase the pressure support... and potentially put her on an osscilator which is a step above a ventilator. So she was very sick. Today, her oxygen has decreased some, to 78%, and her x-ray looks a little better, but she's still very sick, and it's so hard to see her looking this way, she's just not herself at all, so they stopped feeding her for now. They tried to put an arterial line in her today so that they wouldn't have to prick at her foot constantly for blood to get her gases, but were not successful.

And Jessica, well she still has the PDA, but the cardiologist said the heart looks fine other wise and all of her erratic heart rates was a result of being a premie and her PDA.
The worst news of the day was with Jessica's cranial U/S. There were no bleeds, however she was diagnosed with a PVL, periventricular leukomalacia (something like that), which is a cluster of cysts near her ventricles...basically brain damage, that most likely occured as a result of the twin twin transfusion syndrome in utero, since Jessica was the donor. Things just continue to get worse for the girls. We thought her bowel issues, and her PDA were serious...and they are, but they can be fixed. Damage to the brain cannot be fixed, which was mine and Keith's biggest fear about delivering so early. It's been a really rough day. We don't know the prognosis, all we know is that poor little Jessica will most likely have some form of cerebral palsy. Tomorrow we are meeting with Dr. Vincer to answer our questions and give us some statistics. He is involved with the children in follow up clinic so would see all different types of CP.
All we can do is pray that her PVL does not continue to get worse and that Jessica (and Alyssa) don't end up with severe CP. We just want them to be happy healthy girls...is that really asking that much?

Getting used to the NICU

2008-05-25T22:22:00.000-03:00

Time to update the blog again...one week later. My days are so mixed up, it's hard to remember everything that happened this week. Keith had this past week off work as well, and it was my first week home so a routine schedule has not completly been established. Basically we get up in the morning early enough to drive Emily to daycare (somedays later then others), and then head to the hospital to spend some time with the girls before rounds. Rounds happen every morning between 9-11am, where all the team members make their way to each baby in the NICU and discuss the plan of care for the next 24 hours. It's a good time to learn the details of what is going on, and ask questions, or at least let the Neonatologist know that we'd like to chat after rounds are through. By the time rounds are finished we have a little more time to spend with the girls and then it's lunch time, so we have a little break, usually in the Ronald McDonald room, which is a great family room, with comfy couches, baked goods and fresh pot of coffee...also lots of toys and a craft room for the kids.
The days go by extremely fast...I pump every 3 hours, so that takes up time, and in the afternoons is when I usually get to do kangaroo care, which is the skin to skin cuddles with the girls. Before we know it, it's 4pm and time to go and pick up Emily. We then spend time with her until she's sleeping, and I try to get back to the hospital from 8-10. Because I can't drive, this is sometimes still a challenge. When Keith's mom was here, she was able to stay with Emily when Keith and I went in, and also she drove me one night, and I've had friends take me in other nights. My parents came back today, yipee!! and I'm sure they will drive me in the evenings if I'd like, or at least be here, if Keith and I want to go in. I have taken a couple nights off (like tonight) and called right before bed for an update. Although the day goes by very fast, I still feel exhausted at the end of the day. I'm having much less pain, almost back to normal, and my strength is also better...but no marathons for me this year, hopefully next year.
Lately Alyssa has been able to come out of the incubator for kangaroo care every day, which is awesome. When the girls come out, they like it to be for over an hour, because like I mentioned before ( I think) it is the transition from in and out of the incubator that is hard on them. Alyssa's vitals have been excellent everytime she's been out. She's been quite stable all week, and was up to 2 lbs yesturday!!! However she lost 20 grams yesturday, hopefully she'll be back up again tomorrow. They heard a murmur when listening to her heart, but because she hasn't had any major changes in oxygen or her other vitals, cardiology has not been in to see her yet, and no further tests have been done. She also started taking small amounts of breast milk this week, and is now up to 2 ml every 4 hours, and tolerating well. She is pooping and peeing, and is usually on room air on the ventilator with low pressure support. They want to keep her on the ventilator to help her grow.

Jessica has had an up and down week. Her perforated bowel has remained relatively stable...she continues to drain some serous fluid, but no more then before, actually less and she had her first poop yesturday, which is huge!! So things down in that area seem to working. She is still NPO, meaning she can't have milk yet, only calories through her IV, because of the bowel issues. She is also gaining weight and is only about and 1 oz and 1/2 less then Alyssa which is really great. She also has a murmur, but hers is louder, and more concerning therefore she had an ECG done to take a closer look. She has something called a patent (meaning open) ductus arteriosus (PDA), which Alyssa most likely has as well. Jessica's is a moderate size PDA. When babies are born and they let out their first cry and take their first breath, the ductus arteriosis, normally closes, and that's the end of that. However premature babies who don't cry and take their first breath can still have this open, and it can, or may not lead to problems. Instead of the blood getting reoxygenated in the lungs, this PDA can shunt the blood back to the body deoxygenated, and cause increases in the oxygen needs for the baby. When the babies start showing major changes that this PDA is affecting them, there is two options: 1) medication...which Jessica cannot take because of her bowel issues, which the medication can further disrupt...or 2) surgery to close the vessel. Right now, we're playing the "wait and see" game...hoping that she will grow bigger before we need to resort to surgery, or best case scenario, the ductus will close on it's own, which is possible but unlikely with the size of it. Alyssa would be fine to take the medication if needed because she has no bowel issues.
Jessica has been like a yo yo, with her oxygen levels. She's usually between 30-40 % oxygen, and those numbers change constantly as her oxygen saturation continues to go up and down constantly as she can't decide where she wants to be. Today I was able to have some cuddle time with Jessica which was the first time in over 3 days. She's been too unstable with her oxygen and also having lots of dips in her heart rate over the past 4 days. They started her on some caffeine a couple days ago, which seems to help regulate her heart rate better. Now she is only going down in her heart rate when being suctioned, when before it would happen more frequently when being handled and also just for no reason at all. They also started her on antibiotics to try to rule out an infection as her white blood cells have been up. So lots more going on with Jessica...Good news for her though, is that her color in her toes is completely back to normal!!
Alyssa loves to lay on her tummy, and always wants to be covered up, Jessica also loves to be covered up, when on her back. Both of the girls have much better color now, they aren't as red as they were the first couple of days. Tomorrow they will be two weeks old...it feels like they've been here over a month. tomorrow they also have U/S scheduled for their heads, hopefully everything will be ok, and they will find nothing to be concerned about.
I think that all the news for this past week. Alyssa and Jessica continue to be little fighters. I can't wait till I can hold them again tomorrow!! Keith is back to work tomorrow...Mom and Dad are here to help again. A girl really needs her Mom and dad at times like these.

Jenn's rant #1

2008-05-17T11:54:00.000-03:00

This new post isn't a lot of information, it is more for myself. The blog helps to keep you all updated, but it's also a bit of a remedy for me to help me get through everything. Everything seems to be going relatively well considering...but I think I was ready for a big breakdown, and this happened a couple nights ago when touching Jessica. She's had a really rough week, and it really affected me. I'm sure it's also a mixture of lack of sleep, pain, and the situation in general, but I feel very hopeless sometimes, in that there really isn't a lot I can do. The nurses are so good with the girls and so good with Keith and I. They answer all of our questions and really listen to how we're feeling and our concerns. Right now I'm trying to decide who I want to be Jessica and Alyssa's primary nurses, you can choose a few nurses who you really like to do most of their care.

Dr. Macleod was in to see me yesturday and today, which made up for not seeing her for the past week. She always makes me feel better. I'm still in the hospital, and will probably stay here until Monday. I don't have a lot of strength. It takes alot of energy to wheel myself to the NICU, and I can't stay there very long before getting week, or pain. The pain is so much worse then with Emily's C-section, but has improved the last 2 days to bearable. I want to spend so much more time downstairs, but instead I just try to go a couple times a day. Today I tried to be very ambitious, and walked to the NICU, but almost passed out on my walk back to the 7th floor. One of my favorite nurses, Mary, got me in a chair and wheeled me back. Mary was great...when on bedrest, she'd wash and massage my back before bed everynight. I've had really great nursing care here, I can't complain at all, and I am trying to think of what to get the staff on 7A before I leave. Also Dr. Macleod, and the birthing unit staff...Jocelyn and Connie really stuck in my head, although they were all really great.

Yesturday, I got to cuddle with Alyssa, it was amazing...We did skin to skin and she was so calm and relaxed for the 1 hour and a half, Charlotte said we could take her out again today to cuddle. Very exciting.

I think it's going to be hard at home at first with stairs, and trying to get into the hospital so much. I'm not sure if I'll come and spend the morning if I can tolerate it, or come several times a day, which may be tiring too.

We've had a little rotation system at home. Like I mentioned before, mom and dad spent the first 2 weeks of bed rest at home with me, then Keith's mom Helene spent the next 2 weeks to help out, and then Mom and Dad came back right before I was admitted to the hospital. Helene also came for a little visit to meet her new grandchildren. Mom and dad are going to stay with me until the end of the month, and then my aunt Linda from Toronto will be flying in to stay with me and help out. I don't know what I would do if I didn't have such a great family. They're really there when you need them.

And Emily, my sweet Emily, do I ever miss her. Yesturday was the first day she's seen me somewhat mobile, and she was so happy. I miss playing with her and holding her. She's doing so well considering...she's definetly off schedule and not always sleeping through the nights, but that's not the worst thing that could happen. She does come see me for about an hour after supper everyday, but it really gets her bedtime routine messed up, but at least I can see her play. She doesn't like seeing me in bed, now when she sees a stretcher or wheelchair she always says "mommy's". We'll keep her in daycare for at least the summer, so I can get to the hospital during the day and spend my evenings with Emily. Pumping seems so much more time consuming then regular nursing, because you can only really do it at home or at the hospital with all the sterile kits, so I have fine lines of when I'll be able to go anywhere, whereas if I was nursing, I could be anywhere. That's ok, by the end of the summer.

Well that's my little rant for today, I'm sure they're will be many more, so I'll give you the heads up when it's a rant, or when it's information about the girls in the title.

The birth of Jessica and Alyssa

2008-05-16T14:18:00.002-03:00

Alyssa Grace 1lb 15 oz

Jessica Elizabeth 1lb 10 oz

After my water broke, we decided the safest method to deliver was by C-section. It was very unreal to me...thinking the twins were coming out very soon. Keith and I were both very scared. It was the day after Mother's Day, May 12 at 12:21 and 12:22...I was 25.4 weeks, that Alyssa Grace (Ursula) and Jessica Elizabeth (Phoebe) were born, weighing 1lb 15 oz, and 1lb 10oz respectively. As scared as I was, I knew that I did everything possible that I could do, and these girls wanted out for a reason...we didn't go through everything we did for nothing, these girls are going to be fighters. And they've proven that in this first week of their life. They were both bagged and intubated, which is well expected at this age. It took me about 2 hours to recover from surgery, then we finally got to meet our precious little girls. They are so tiny, but look like beautiful little babies. I still can't believe how small they are. They have so many lines and tubes but were alive and stable.

It is going to be a very very long road ahead of us...but we're very hopeful, and will continue to think positive and do everything we can to help Alyssa and Jessica get stronger.
We had our first scare the night after they were born...a routine x-ray was done on Jessica showing some air in her abdomen. Rob, the surgeon came to my room that night with a consent form to perform a possible laporotamy, or pembrose drain, depending on the results of another test to determine where the air was coming from. If from the stomach, then surgery was required...not even a day old, I was so upset and terrified, knowing well that she may not survive surgery, which Rob confirmed. Luckily...the air was not in the stomach, but the intestines, therefore a drain was inserted which was less invasive. He called me after the procedure to tell me everything went well, thank God. We still dont' really know what is going on there, the U/S didn't show too much, so they are keeping an eye on the drainage for now, and hoping it will resolve on it's own.
Jessica also had some perfusion problems when she was born, her feet, especially her right side, were blackish/blue, so they changed one of her IV lines, and luckily this week the color has improved and she only has a small blue bruised mark on her right great toe. We were all worried about her losing her toes...so another worry...decreased some.
The girls both had U/S done on their brains to determine if they had bleeds on the brains. This has been a big worry to Keith and I since the beginning. Luckily, neither one had a bleed. They will be monitored for bleeds up until they are 3 years old. Poor little Jessica had some type of lesion though, but we dont' know if it is significant or not, so another U/S will be done next week to monitor for changes.
Both girls are breathing room air. Jessica is still on the ventilator with very little pressure support, but mainly because she's having so many other issues. Alyssa has been off the ventilator for a couple days now, breathing through nasal prongs on CPAP, which is just a little bit of extra pressure to help keep her lungs open. Today, Friday...she has had a couple of periods of apnea, but she recovers ok from it...she may go back on the ventilator, which they told us from the beginning would not be unusual, she is still so young, and in "honeymoon stage". Often micropremie's do really well there first week, and develop more problems in their second or third week.
Alyssa lost 15% of her weight as of yesturday, but then gained again today, so she is up to 1lb 11oz, and Jessica is relatively the same.
Lots and lots of information. Keith has posted some pictures on both mine and his facebook sites.
Thank you to everyone who has helped get us this far and who I know will continue to support and pray for us in the months to come. Jessica and Alyssa are beautiful little girls who already are starting to show their personalities. We love them so much, and can't wait until the day we can bring them home and introduce them to all of you.

The second longest week of my life

2008-05-16T13:45:00.001-03:00

Wow...it's been another crazy couple of weeks. Since my last blog entry, we've spent a lot of time between the 7th floor (high risk pregnancy's) and the 3rd floor, the birthing unit. Every time I would start contractions, they would rush me downstairs again to try and stop the labour from continuing. It was really tough. Because normally when you start labour, you're excited...contractions come on, and if they are too painful, you can have an epidural and life is great. I never wanted to deliver because it was too early. So I would go through all the pain of the contractions, and the stress everytime, thinking that today was the day....and I wasn't going to have an epidural...because I didnt' want it to be over. I was so lucky to have the care that I had, and to have some control over the contractions with medication. I remained relatively stable up until the night before my birthday, but then contractions started and down I went again to the birth unit. I was started on the quick acting Atelat again, and one dose of Indocid, plus Morphine. I was stable, and able to spend my 30th birthday up in my room on the 7th floor.
I have a really great family, I'm so lucky. My brother's both married wonderful women, Tammy and Danielle, who have been so supportive along with everyone else in my family. Mom and Dad came in to visit in the morning (they've been here with us these past two weeks, thank goodness), and then they all came along later in the evening (minus dad because he was away for the weekend) for a little party with all the kids. It was as good as it could be when laying on your back...yummy cake and good company. The nurses on the floor had a cake made and came in singing happy birthday in the afternoon. Little things like this really made my day. Also my best friend Heather came to visit from Moncton for the afternoon with her little boy Cooper, it was so good to see her.

But it wasn't very long before contractions started up again Friday night, so I went back down, then came back up Saturday evening, back down Sunday morning, and remained there. The pain was getting worse everytime, and starting to last a little longer. Friday they started me on a Nitro patch which is something new for relaxing the uterus from studies done recently. I'm not sure if it really worked on me or not. My uterus was so irritable at this point...even checking the babies heart rates seemed to irritate me. The pain always started as rectal pressure for contractions...so as you can imagine, the anxiety I had from any type of bowel pressure, not to mention the embarrassment of using bed pans. Every time my bowels moved, the contractions started.
Friday morning I had an U/S to check the babies as the contractions first started up. The babies were still doing well, but very little fluid around Phoebe, around 1cm (below 2cm is dangerous for development), and over 9cm of fluid around Ursula. Again...an amnioreduction would have brought on labour most likely...however may have also reduced the pressure on my cervix...so there was that fine line.
Sunday afternoon/evening...the contractions were the worst, and even though I had been on Morphine all day, the pain would not go away later on in the day. Another U/S was done. Ursula had over 10cm of fluid, and poor little Phoebe had barely 1cm, very scary. It was getting to the point where I really couldn't handle the pain anymore, so they gave me EVERYTHING they could to control the contractions and pain....finally after a LONG time, the last dose of morphine made the pain bearable. By this time, it was too late...my water had broke, and we had to decide how we were going to get the babies out.

The longest week of my life (and the longest blog entry).

2008-05-04T21:02:00.001-03:00

It’s been a while since my last blog entry, a lot has happened. I’ll start back to the week before all the chaos, when everything was still stable. April 22^nd and 26^th I had my appointments for U/S’s. Tuesday’s check was very quick to check the status on the babies and measure fluid levels, both ok. Friday’s checkup on the 26^th was more detailed, with measurements of the babies weights. Phoebe weighed in at 1lb 4oz, and Ursula 1lb 8oz, which was a huge jump from two weeks prior to this appointment. The deepest pocket in Ursula’s sac was around 8 cm, getting past the normal range but not ready for another amnioreduction.

That Friday I was noticing a lot of thick mucous. I never noticed a “mucous plug” with Emily so I didn’t really know a lot about it, but it was something new, and it worried me. I called early labour assessment unit in the morning to find out if it was something to be concerned about. They told me it was normal and not to be concerned unless it was bright red and I was having contractions. So that was that…as the day went on, it still worried me because I read “mucous plug’s” are often an indicator or preterm labour, so I called back at shift change and gave them more information about having twins and TTTS, etc….but still they said not to worry….

Saturday…same guck, still worried, called early labour assessment again, asked to speak with a doctor, which I never was able to, gave them more information about my cerclage and amnioreduction, and then I was told to come in right away. After a very long wait, and a quick assessment, the Dr working said she was also a little concerned about the mucous so she admitted me to the 7^th floor. All weekend I was having menstrual like cramps and rectal pressure, which is what I had before delivering Emily. The cramps weren’t getting any worse so I didn’t think they were contractions at the time. The weekends and nights in here are very long, because my doctor isn’t here, and it is usually residents who you deal with. I know residents are qualified to do their work, but I am so used to Dr. M, or even Dr. V, so when someone else steps in and makes big decisions, it is pretty scary when we know Lynne may have done things differently.

Monday couldn’t come soon enough, still having lots of cramping and pressure. I was wheeled down to the fetal assessment and treatment unit around lunch time to assess the situation. Babies still looking good, although there was some thickening around Ursula’s heart, but no other signs of congestive heart failure. The fluid remained relatively stable around 8-8.6 cm. Then Dr. M did a vaginal ultrasound to check the status of my cervix…and this was the beginning of the longest week of my life.

I am no U/S pro, but I can tell when there is something significantly wrong. There was a huge opening that I’d never seen before, I couldn’t see the last stitch, and I could have sworn I saw membranes pushing out. Apparently I am an U/S pro. The look across Lynne’s face would have terrified the calmest person. She explained to us that the cervix was opening up, and that the membranes were starting to push out and we had some major decisions to make. I didn’t know at the time how far dilated I was, I’ve heard a couple things. I think I was 5 cm dilated at the time of the U/S and close to full later that day.

Our first three tough decisions.

a) Allow Lynne and Dr. V to attempt “heroic” measures and do a “rescue” cerclage. This procedure at this time is called rescue for a reason. It is a very risky procedure, with only a 50% chance that it will work, and a large chance that my membranes would rupture. Meaning delivering twins at 23.4 weeks without having the chance for the steroid to be absorbed…which was another major decision that I’ll talk about later.

b) Our second option was to do the “wait and see method”. Basically tilt the bed into a Trendelenberg position where my head is lower then my feet, hoping to buy us more time without further dilating….and therefore would not be inducing labour futher by poking around, hopefully giving us enough time for the steroid to be absorbed.

c) Our final choice was not an option to us. Lynne told us that it was perfectly acceptable at this point to go through with the delivery, as there is not much more that can be done, and just accepting that basically it was over.

None of these decisions sounded very hopeful to me at first.

Our second set of decisions that needed to be made were based on if we were going to be delivering. The neonatalogist came in to talk with Keith and I about survival rates and handicaps for premature babies at 23 weeks. She told us that if we were 17-21 weeks or so, we wouldn’t really need to make this decision because the babies would be too small to survive. When you get to 23 weeks, the decision is ultimately up to the parents on how aggressive you want them to work on the babies. Survival rates for a singleton baby is 30% and also a good chance for handicaps, and therefore even smaller survival rates for a twin pregnancy. Also because the steroid injection did not have time to absord, the lungs would be very premature.

So again very hard decisions: Do we get the entire team of specialists in, knowing the low survival rates and high handicap rates, and have them rescusitate over and over again, until the babies can take no more, or HOPE that they make it through…even though we may be putting these poor children in a life that they could never be happy wit??. OR, do we have a specialist come in during delivery to assess the babies and determine if he/she thinks they are a “miracle baby” and have a good survival chance, and make our final decision then?? OR do we have the doctors wrap the babies up in blankets and let us hold them for a while, and let the doctors provide them with comfort care?? Not decisions that ANY parent wants to make…No body wants to give up on their baby, because nobody really knows what can happen….but on the other hand, no body wants their children to go through a tough life, full of surgeries, handicaps, pain and poor prognosis.

After a lot of discussion, Keith and I felt the best decision was to go along with the surgery and hope and pray that it went well. I felt that at least we were doing something, and Dr. M and Dr. V are excellent doctors, so we had a lot of faith in them. The surgery took about an hour. I was on the operating table with my head down very low and my feet up high. They filled up my bladder in hopes that the pressure in my bladder would push the membranes back in. Dr. M said you could see one of the babies feet trying to kick out. Once the membranes were back in, they had to find as much cervix as possible to stitch below. And all of this happened without rupturing my membranes….we were SO happy and relieved, during surgery we finally picked the girls names. After recovery I was transferred back into my room, and very shortly after that, the cramping started AND contractions began. We were very scared because I was already on Indocid, a medication to help prevent contractures. I was transferred down to birth and labour again, and was given Atalat (I don’t know the spelling of all these drugs), a blood pressure medication but also used to help relax the smooth muscles of the uterus….and after a very long night, contractions finally stopped and I got my first hour of sleep from 6-7am.

The next couple days I remained relatively stable and was moved back up to the 7^th floor. I got another steroid injection that Tuesday, antibiotics daily to prevent infection, both Indocid and Atalat to prevent contractures, continued on Heparin for blood clots since I’m on bedrest, and still in the Trendelenberg position (hard to type and eat like this), other stool medications that I’m sure you don’t need to know about it, and the occasional Tylenol 3.

Thursday evening…the cramping and contractures started again, and they became more painful then Monday towards the end. I was transferred downstairs again back to the birthing unit, given more medications (by this time I was finished my dose of Atalat and Indocid), and then given some Morphine for the pain. I love Morphine, the pain was so much better, and I could barely keep my eyes open….finally some sleep. Once the morphine wore off, I was still feeling some contractions, but less, so I got more medication for contractions, more Morphine, and settled back to sleep. They discharged the heparin one of the times I went downstairs, in fear that I would go into labour and bleed to much, but they have recently restarted it again.

So here I am, still pregnant and still stable and still planning to deliver two healthy little girls, who knows when that may be. We have not come this far for nothing. Our next major challenge next week, may be another amnioreduction. I know Dr. M is a little apprehensive about it, because she doesn’t want to stir things up if possible, but my fluid levels continue to creep up.

I don’t have access to the internet, but have been receiving my messages from email and facebook from Keith…who will also copy and paste this blog sometime tonight.

Thanks to all of you for your nice messages, cards, thoughts, visits, flowers, treats and prayers. It continues to mean a lot.

Quintero's Staging System for TTTS

2008-04-19T08:47:00.001-03:00

TTTS has been classified into 5 stages by Dr. Quintero. The staging is not a great predictor of prognosis, however it helps monitor the disease progression. Everyone progresses differently, some people remain in Stage I or II and other people skip stages altogether.

Stage I: polyhydraminos(lots of fluid) in the recipient (Ursula), severe oligohydraminos(little fluid) in donor but urine visible within the bladder in the donor (Phoebe)
Stage II: polyhydraminos in the recipient, a stuck donor (meaning so little fluid that the baby can actually get stuck on the membrane), urine not visible within the donor's bladder
Stage III: polyhydraminos and oligohydraminos as well as critically abnormal Dopplers (at least one of absent (Phoebe did have this) or reverse end diastolic flow in the umbilical artery, reverse flow in the ductus venosus or pulsatile umbilical venous flow) with or without urine visualized within the donor's bladder
Stage IV: presence of ascites or frank hydrops (fluid collection in two or more cavities) in either donor or recipient
Stage V: demise of either fetus. This staging system was descriptive but had not been validated as prognostically important

Presently I am in Stage I, which is great news. I was in Stage II before I had the amnioreduction, but have remained stable since. Although I have had fluctuations with the Doppler's (heart flows), it luckily hasn't been serious enough to put me into Stage III. Yesturday, the intermittent end diastolic flow that we were concerned about Monday corrected itself, and ALL Dopplers were normal, thank GOD. However, my fluid is starting to increase in Ursula's amniotic sac again. Friday she measured the deepest pocket to be 6.7 cm, which was quite a jump from Monday. Dr. M keeps trying to reassure me that under 8 cm is normal and not to be concerned, as this increase could be the difference of the baby peeing right before the measurement was taken, which was true, because the bladder was very small.
But I can't help be worried, since to me, I just keep seeing the fluid accumulate...from 3 to 4 to 5, and now almost 7, which is pretty close to 8 if you ask me. I am NOT having the symptoms I had last time, severe shortness of breath, constantly emptying my bladder, and a hard belly. So I guess we just continue to wait and see.

It's been a long week, it definetly felt longer then 4 days between U/S's. But everyone coming to visit has really helped, and also the nice cards, and messages on facebook, and email have put a smile on my face, and the occasional tear in my eye. Please keep coming to visit, and PLEASE do not feel like you have to bring anything, I am happy to just have some company, that is what really helps the time go by.

I had a visitor on Thursday from another woman who had TTTS. She was diagnosed at 13 weeks!! She spent most of her pregnancy in Toronto, and had met with the Dr. who performed the laser surgery several times to discuss options, however she was very lucky and did not require surgery or amnioreduction. She was monitored 3x week initially, then twice a week and once a week towards the end. She was never on bedrest and delivered 2 beautiful little girls at the end of January at the IWK in her 36th week. One baby weighed around 4lbs and the other girl weighed 6 lbs. I really enjoyed meeting them all. I know that I have a lot of friends and family who are willing to listen to what I'm feeling, but talking to this complete stranger initially (and now my friend) really helped, because she's been through it. I really opened up to her, and told her my fears and my thoughts, and it was comforting knowing that she had the same thoughts when she was pregnant. So we'll definetly keep in touch...

Next U/S is on Tuesday...Have a good weekend

I am comforted by life's stability

2008-04-14T21:44:00.000-03:00

"Stability is to remain unshakeable, without any fluctuation in all situations." In our situation, stability is key, and thankfully another U/S showed this today. Fluid accumulation remains stable at 4.2 cm in the deepest pocket of Ursula's amniotic sac, and plenty of fluid in Phoebe's as well. The bladders are still both present and working well in both babies, and Ursula's heart continues to be normal. Phoebe's heart I am little concerned with. Before the amnioreduction, she had an absent end diastolic flow, which I thought corrected itself after the treatment, however today Lynne told me that the flow was no longer absent, but intermittent. She wasn't too worried about it, but it is not normal which worries me. But she's the professional so I should just stop worrying and trust that she knows what she is doing. Also after a quick check of the cervix...she said bedrest was doing me good, because I've had no thinning since the surgery. Excellent, excellent, love good news.

We chatted briefly about starting on steroids in another couple weeks, once I've hit the 24 week mark. So not only will I continue to get bigger from laying on my butt all day and drinking 3 cans of Boost on top of my meals...(we may need to tear down a wall to get me out of the house by the end of this)...but I will also be ripped from steroids :)
The steroids are to help with the girls lungs if I go into premature labour, and they don't benefit until a certain point in development which is after 24 weeks. I find that reassuring to know that they look into the lung development at that early of a stage.
Well that's it for now, another U/S on Friday, which will be our 10th!

Oh...and NO, Phoebe and Ursula are not really the names Keith and I have chosen for the girls...

A week in the life of a patient on bedrest (U/S April 7, and 10th/08)

2008-04-10T20:34:00.001-03:00

I am now 21 weeks. The week went by surprizingly fast. It may sound silly to some of you to be excited about one week going by, but when dealing with a disease like this, every day and every week we make it through stable is a HUGE relief. It gets us closer and closer to a point of safer delivery.

I've had many people write me or call and ask what in the world I do all day on bedrest, so I thought I'd give a little description of my days. This week has been busy for me, which has been great. Saturday Randy and Tammy and the boys, and Jamie and Danielle and Molly came over for supper, so we had a big turkey dinner and the kids had a great time. The next couple of days I spent preparing for an interview for a job that I REALLY wanted. I had the interview Tuesday afternoon by teleconference, and found out today that I got the job!! YIPEE!!!

Wednesday was a typical day, I spend most of my mornings upstairs in bed watching BT, occasionally Regis and Kelly, checking my mail, researching, or resting. Mom or Dad bring my breakfast and boost up for me, and after I get dressed and washed up, I come downstairs shortly before lunch and spend the rest of the afternoon laying on my left side on the couch (and occasionally switching to the right) and stay here until it's time to go to bed. I get up only to use the washroom, shower and get dressed, and for appointments. The afternoons with Mom and Dad have went by fast, we chat, I read, talk on the phone, eat and drink Boost. Yesturday was the first day in weeks that I had the chance to get some real fresh air for a lengthy period of time. Dad dug out our patio furniture and I rested with my feet up outside, it was beautiful!! I can't wait for the day that I can go for a walk, or run for that matter, although I feel like it will take me years to build up any strength or endurance. Emily is usually picked up from daycare around 4:30, so she always entertains me until supper time. Keith gets her ready for bed around 7 ish and then Mom and I have a game of something and then it's time for bed. I will be very sad to see my parents leave this week, but realize they need a break too, from all the cooking, cleaning, driving me to appointments and picking up Emily, looking after Emily, and emotional support they have provided. I am really worried about Emily, as she's become very dependent on her Nannie, and I think she'll be extremely sad when she realizes she is not home. Her sitter Renae, said that when she wakes from her naps at daycare, she always calls for Nannie. Hopefully she'll adjust quickly to her other grandmother, Keith's mom is arriving tomorrow evening.

Today we kept Emily home, my friend Jen and her little boy Cameron came over to play and visit for the morning. Visitors are always welcome!! (as long as your not sick please). And then this afternoon I had my second U/S of the week.
My biweekly U/S's always bring on some excitement and anxiety and take up a couple of hours of the week. Now that you know how exciting bedrest can be, here is what you're all waiting to read...

Phoebe and Ursula are doing wonderful and continue to hold their own...they both have good size bladder's, the Doppler's for the hearts are well within normal limits, and even Phoebe's circulation in her brain is normal, which is a relief. Sometimes the smaller baby, who donates to much blood, can have brain damage if the brain is not properly vascularized. There is no extra fluid in the Ursula's belly which is also a good sign. Ursula now weighs around 13 oz, and Phoebe 10 oz, therefore 22% difference between the two, which is stable from two weeks ago, but still considered serious when it is above 20%. The amniotic fluid measured both Monday and today, remained at 4.5 cm in the Ursula's deepest pocket, which is more then last Friday, but nothing significant to worry about yet. Dr. M said as long as we're below 10 cm, and the babies continue to do well, we will just keep monitoring. We are all very excited about these positive results and hope every week continues to be this positive. I am back to the hospital next Monday.

Finally some good news (U/S April 4/08)

2008-04-05T08:37:00.001-03:00

The girls at work decided to name our babies a couple weeks ago, instead of calling them Baby A and Baby B, so I'm going to use those names from here on in. Phoebe is the smaller baby (oli - less fluid) and Ursula is the bigger baby (poly - more fluid around her).

I had a good week. I continued to feel really good, no dizziness, no shortness of breath, sleeping great at night, and feeling lots of flutters from Phoebe and Ursula. Yesturday morning I started to get short of breath again, and started to worry about the fluid accumulating, although I knew it wasn't as severe as Monday. I was very nervous before my U/S appointment as I think I will be before every appointment.

The nurse/technician always begins the U/S until a doctor arrives, however it was only a matter of minutes before Lynne showed her smiling face in our cubicle. Keith and I are starting to become quite familiar with U/S, and what we should be looking for. I had a good feeling initially when the girls showed up on the screen, it almost looked like a normal twin pregnancy U/S. I saw both bladders, the hearts looked good, and the babies were moving around constantly. An unhappy baby doesn't move so much. Lynne was also very pleased with everything, and measured the deepest pocket in Ursula's sac to be 3.8 cm which is so much better then over 10, which it was on Monday. (I don't know how much fluid was left after the amnioreduction, so I can't really say how much fluid accumulated since Monday). Although we were all very happy with the results, she told us we still had a long road ahead of us, and to stay positive, but remember things can change quickly. But still....Phewf! What a relief for a change, finally some good news to get through the weekend. I'm 20 weeks....

On our way home, I paged my friend Jan at work to meet me at the door to pick up some papers. To my surprize...Angela, Jan, Lori, and Kim came down with a a large mexican lasagna, and a large basket FULL of goodies. There was snacks, chocolate, bath and body products, magazines, Sudoku puzzles, wine (for celebrating once the girls are born), gift card for movies, movies, DVD's, electronic solitaire game, and more! AND a lot of cash to spend on something nice for myself...take out, movies, clothes, etc. ! I couldn't believe it, it really took me off guard, and I felt like I was going to bawl as soon as I saw them all coming towards me, but I held it together pretty well. As I went through the basket I became a little emotional...it was just SO nice and SO thoughtful, and I didn't expect it, it really just made my day even better. Alot of people added to the basket...The girls in the CR staffroom, and the CV surgery nurses/staff on 5.1 and 7.1. So if anyone is reading this blog that contributed, THANK YOU, THANK YOU, THANK YOU. I think you are all wonderful, and thank you for thinking of us during this difficult time.

Hope you all have a great weekend, next update will be after Monday's U/S.

Amnioreduction (March 31/08)

2008-04-02T07:42:00.001-03:00

I barely slept Sunday night thinking about the U/S and possibly amnioreduction and the risks of performing the treatment. I kept dreaming of the needle going in, and then my water breaking like a balloon was popped. I was very dizzy when I got up in the morning, my belly was much firmer and I pretty much knew that the fluid increased. At this point, I looked like I was 8-9 months pregnant rather then 5 months.

We didn't wait long to see Dr. M, I was still very dizzy, so the nurse gave me some glucose and cold cloths. I'm not sure if it was my nerves, or that I'm been on bedrest for almost a week already, or a little of both. The U/S really didn't show any surprizes. Unfortunately the fluid in Baby A was not getting any smaller, I was measuring over 10 cm in the deepest pocket, and Lynne had explained on Saturday, that chances are we would have to drain the fluid if it exceeded 8 cm by much. The babies were still healthy, although there was a little concern with Baby B's (smaller baby) Doppler for the heart.Baby B's diastole phase was showing an abnormal pause, however Lynne wasn't too concerned at this point.

As they prepared the room, I was very nervous and cried a little, Keith was there for support as always. All along I kept hoping that we would be one of the lucky ones and that it would all even itself out without treatment. It wasn't the treatment I was nervous about, it was the chance of going into labour. Dr. V also came in the room for the procedure to help Dr. M, as well as a nurse and I believe a student, or resident. It was very quick and painless. They drained 1600 mL of fluid from my uterus!! Then the cramping started and it continued to increase, so of course I was worried, even though Dr. M told me that cramping is common.
It turned out to be nothing a couple Tylenol 3 couldn't fix. I was admitted to the hospital to be monitored for the next 24 hours which is considered the critical stage, and given medication to prevent contractures every 8 hours. Lynne did a quick U/S before I left the hospital to make sure everything was ok, and thank goodness it was. It actually looked like a had a normal twin pregnancy, however I know this can change. We're hoping that we don't have to do this treatment for a long time, but some people get it done every 3 weeks to 3 days. While other's only need it a couple times during the entire pregnancy.

I was discharged yesturday, late afternoon, and I feel great. I am not rushing to the bathroom every hour, I can breath better, the dizziness is gone, and I am so skinny ;) I now look like I am 5-6 months prego. Our next U/S is booked for Friday afternoon.

I really don't know what I would do if Mom and Dad weren't here. They've been a huge help with cooking and cleaning and helping with Emily. And it's also nice to have them here with me when I'm home and Keith's working. Emily was better with me yesturday, I didn't look as sick, and I think that's what scares her. She did lots of cuddling and we played together on the couch.

By this next U/S I'll be 20 weeks. 24 weeks is the first landmark, however still a very scary stage. There is a 50% survival rate (i'm not sure if this is for one, or two) and if they do survive a 1/3 chance of some type of handicap. 28 weeks is a much better landmark, with an 80% survival rate....however the goal is to make it to 32 weeks, where the lungs are fully developped and the girls have the best chance.

We still need a lot of prayers, hope, and luck.

Surgery went well (March 27/08)

2008-03-30T20:02:00.000-03:00

Surgery was quick and painless, thank goodness for spinals. The worst part was recovery, it took over 3 hours to feel my legs again, much longer then after the c-section with Emily. No premature labour, thank God!!! Step 1 done with success. My family came to visit in the hospital which helped so much with the time. Both Tammy and Danielle brought food and magazines which is the best thing when on bedrest (and when your meals keep coming as clear fluids).

Mom and Dad arrived the day of my surgery and have been a huge help. It's reassuring knowing that Emily is happy when she's home and doing well. We're keeping her with her sitter, Renae for the most part. There are so many changes going on for her, that I want to keep daycare consistent, she loves being around the kids and Renae. It is very hard for me, not being able to play with Emily like I normally would. I can't lift her, and have to spend most of the time in bed or the couch, and she's too young to understand what is going on. She was scared to come close to me at the hospital because of the IV pole. It breaks my heart that she would be scared of her own Mommy.

I was in the hospital until Saturday (yesturday). I had another regular and vaginal U/S to check the babies and my cervix, and the stitches were in well, and the babies still healthy, but the fluid is accumulating and I'm at the fine line between waiting and doing the amnioreduction. When the deepest pocket of fluid in the larger baby is greater then 8cm, this is usually the point where amnioreduction is done. Again with treatment there is the risk of my membranes rupturing and going into labour. I am 19 weeks pregnant and the babies would not live at this point. I was measuring between 7.5-8, therefore very close to needing treatment. My next appointment is tomorrow, Monday March 31st. Dr. Macleod said come prepared to stay the night if she does an amnioreduction.

I'm happy to be home, but feel very helpless in that I have to ask for things all the time. Emily has become very comfortable with her Nanny and Grampie, which really is good, but it was sad when they went out for a bit today, because Emily cried and cried, and I couldn't comfort her at all. She only wanted Nanny, not Mommy or Daddy. She's so confused. I was very upset that she didn't want to come to me, luckily she warmed up again after 10 mins or so and was playing with me and cuddling as much as she could in bed, lots of kisses and hugs.

Tomorrow is another day, and we'll see what the U/S shows.

The beginning of bedrest (March 25/08)

2008-03-30T19:36:00.000-03:00

Ok, my next U/S was Tuesday March 25th. The good news was that both babies still have good bladders and hearts and grew an ounce each. There was 22% difference is size, so a little bit worse, but no major changes. Still a lot more fluid around the bigger baby, but basically stayed the same from the first U/S. I had a different doctor do this U/S which was good in a way to hear another person's perspective. He also did a vaginal U/S (sorry it sounds worse then it really is) to take a look at my cervix.

We thought we had enough problems with the TTTS. He told me that my cervix was very thin, 2.5 cm to be exact, and as low as 2.0 cm when pressure is applied to my uterus. For anyone who doesn't have children...the thinner your cervix is, the more likely your water will break and you can go into labour. Normal is greater then 3 cm, so I was at a pretty bad spot considering I was only 18.4 weeks along....still way to early to deliver babies. Which is something I also forgot to mention. If TTTS is discovered later in a pregnancy, another treatment option is to deliver the babies if it is a safe time to do so, which is why it is so much worse if early in your pregnancy. So my Dr, and the Dr who performed the U/S went off and discussed my case and came back with some options. They told me, that I could wait till Friday and see if there were any changes...there was the possibility that my cervix could stay the same until I am safe to deliver, however very slim chance, with the extra pressure of two babies in there. The second option was to have surgery, a cerclage to stitch up the cervix, which is fairly common when it is planned and happens in the first trimester. However in the second trimester it is more of an emergency cerclage. The risk of having the surgery is the exact thing we're trying to prevent...early labour, bleeding and infection.

We decided to have the surgery, and was booked 2 days later for Thursday. In the meantime I was still reading...my Aunt Nancy sent me an email with a positive story of a girl named Katie from California who had a very long and challenging pregnancy with both amnioreduction and surgery for treatment. She delivered two healthy babies in the end. I contacted her by email and she wrote me back that same day with some contact information of Mary, the president of TTTS foundation and Dr. Julien De Lia the man I mentioned earlier in a blog. I emailed and called Dr. De Lia, and he called me back that night before I went in for surgery. He is very knowledgeable, and gave us some hope. He was very happy I was having the cerclage, because he said many Dr's around the world treat the TTTS with surgery, and ignore the fact that the cervix is thinning until too late, and eventually the patient may go into premature labour anyways.

We were scared to have the surgery with the risk of premature labour, but we also knew that if my cervix thinned further surgery wouldn't be an option because there would be nothing left to stitch. My plan of working till the end of the month didnt' quite work out, as I was put on bedrest immediately after my Tuesday appointment in hope that things didn't get worse from Tuesday till Thursday.

It all sets in...

2008-03-30T17:14:00.002-03:00

I got back to work after my appointment, and tried really hard to keep myself together. Everyone knew I was going for an U/S and would most likely find out the gender, so it was difficult to be happy and tell everyone I was having twin girls, without thinking about the diagnosis of TTTS. I was ok, for the first 10 minutes or so, and then all the information we learned hit home...I was in a step down unit with my back to all the nurses trying hard to look through a chart so that no one could see the tears coming down my face, my vision was blurred, and hiding through a chart was doing me no good. One of the nurses, Jolene, who is also a friend, saw me...and that was it. She pulled me aside, and I could barely get the words out to tell her what was going on. And then another friend and coworker also came over, and I was a mumbling fool.

Being pregnant in itself has its own set of fears. Everyone wants a healthy baby, and there is risks with every pregnancy, even when U/S shows everything is going well. It is not until you hold your baby in your arms that you really feel a sense of relief. To know that there is problems going on already, is very scary, especially when there is nothing that you can do about it.

I managed to finish up the work day, and that night Keith and I both did our research on the computer. http://www.tttsfoundation.org/. This was the first website I read which had some really good information, but also very upsetting when reading the message boards. If you have some time, take a look. The "during pregnancy"boards are encouraging....but it's the "loss of both" or "loss of one" which really made me realize how serious the disease is. (by the way I apologize for my poor grammatical skills, I realize I am writing both in the past and present at the same time).

All week, I read and read...but the more informed I became, the more upset I was. Sometimes knowing to much is not a good thing. The only thing I read that I could do to help was bedrest and drinking Boost 3 times a day. This has been researched by Dr. De Lia, who believes that "TTTS patients at mid-pregnancy have severe hypoproteinemia and anemia" and drinking Boost on top of your regular meals may help correct any malnourishment problems.
I began drinking the Boost immediately, however became extremely bloated as I was consuming an extra 800-900 calories a day (I didn't know at this time that you're suppose to sip the drink throughout the day, not consume each can at one sitting). The bedrest was impossible as I was still working, and had my little Emily to look after. Luckily it was a short work week, and we went home to Fredericton for Easter where I was able to relax, and didnt' have to look after Emily as much, because she had her cousins, Alex and Austin around to play with, plus most of my family to help out.

I didn't talk much about what I knew about TTTS with my family or friends, because I wanted to enjoy my weekend, and not spend the entire time crying. Poor Keith had to deal with that. Every night we'd spend some time talking about it, and really you can't talk about it without getting upset. He was also good at nights in taking most of the responsability looking after Emily.
It was a very emotional, and LONG week waiting for that next ultrasound to find out how my girls were doing. When you fear the health of your babies...your perspective on life can change very quickly. I didn't care about anything other then growing these babies into healthy little girls. Any issues on money were soon forgotten as my life now had a new focus.

Identical twin girls (March 17/08)

2008-03-30T15:48:00.001-03:00

Saint Patty's Day is suppose to be a very festive and cheerful day, however, not so much for us. We had our U/S in the Fetal Assessment and Treatment Unit, which is where high risk pregnancy's are looked after.

The resident started the U/S going over the anatomy of the babies. Lynne came in shortly after, and I could tell she had some concerns but was trying not to overeact initially.
There was definetly only one placenta. With identical twins, if the egg seperates between conception and day 4, the babies have their own placenta. It the egg seperates between day 4-8 after conception then the babies share the same placenta, and in our case they have their own amniotic sacs, however it is possible to also share the same amniotic sac. It was also very obvious from the U/S that the babies were girls!

As she went over the U/S she told us she was concerned about the difference in amniotic fluid around Baby A and Baby B, and told us that she thought the twins were showing early signs of Twin twin transfusion syndrome (TTTS). This is a disease where there is unequal sharing of the blood and nutrients between the two babies, and can occur in 10% of identical twins. The donor baby gives too much blood to the recipient baby, which is bad for both babies. The recipient who is getting more blood and nutrients, grows more, but also has to work extra hard with all the blood, and is at risk for congestive heart failure. Because it has more blood and nutrients, it's bladder is also working harder and urinating more therefore producting more amniotic fluid. The donor baby obviously is not growing as much, and if not urinating as much, then has little fluid around it to develop. That being said, the main things to look for in this disease, is the amount of amniotic fluid surrounding each baby, the discrepancy in size between the two babies, and both the bladders and hearts. Both bladders and hearts looked good, and there was a 20% difference in size between the babies, but a large difference in the amniotic fluid. However, Baby B (the donor), had enough fluid surrounding her for development. Lynne explained to us that with TTTS it is very unpredictable, and that within a couple days to a week, things could even out, stay the same or get much worse, therefore weekly U/S were necessary to monitor the babies.

She briefly went over to treatment options, but said we weren't at the stage requiring them yet. Amnioreduction is the first option, which is similar to amniocentesis, but used as treatment rather then assessment. They can drain fluid from the bigger baby's sac in hope that the pressure change will even things out between the two babies. Some people do this once and everything is fine, other people need this draining a couple times a week. The second treatment is a type of laser surgery where the abnormal vessels between the two babies are disconnected in hope of correcting the main problem which is an unequal sharing of the blood and nutrients.

This was a lot of information to take in.

From the beginning...

2008-03-30T14:51:00.002-03:00

I decided to start a blog...since I have so much time on my hands these days, and also to keep our family and friends updated with my pregnancy without rewriting the same thing over and over again, which becomes very draining.

First of all... a little background information. For anyone who doesn't know, I'm pregnant again! We found out in December, and I made an appointment to see my family doctor. I wanted to see the same obstetrician I had for Emily, Dr. M at the IWK, so I was referred immediately, however because she is so busy I didn't have my first appointment until March 12, when I was 16.5 weeks along.

The first trimester was very normal (as normal as being pregnant can be), however more difficult then carrying Emily. I was nauseous everyday allday and was put on Diclectin to help, which it did, but made me extremely fatigued. I ate constantly. I couldn't get enough of egg and bacon mcmuffins at work in the morning, and was eating more then the men in my staffroom at lunch. I also had more dizzy spells, and the occasional cramping (both of which I went to see a doctor about, but they were not concerned). By 13 weeks I weaned myself off the Diclectin, and felt better, but still tired...but who isn't tired their second pregnancy when you have a 15 month old to look after. Normally a heart beat can be heard around 12-14 weeks, so luckily I worked on a great nursing floor, with great nurses who found a heartbeat for me with the Doppler before waiting to see my OB, which felt like forever.

March 12th we finally got to see Dr M, who really is the most wonderful person. With Emily she made me feel great everytime I went to see her. She told me I was a "star" everyday (which apparently she tells most patients, but who cares, it feels good) , and her cheery, outgoing personality was so encouraging. I always spent more time in the waiting area for appointments, but I soon learned why. She spends the time with her patients, you don't feel rushed, and you can ask her anything. I often wondered how she would be in a crisis situation, and now I know. She is very honest, and upfront, and gives lots of hugs and support when need be (which is almost every day I see her).

We answered all the routine questions with the nurse, had my vitals checked and listened for the heartbeat. The nurse didn't seem to concerned at this point that I had gained 20lbs and I was only 16.5 weeks pregnant...some people just really enjoy their food. It wasn't until she measured my fundal height, which I believe is from your pelvis to the top of your uterus, where she looked a little surprized. Keith was with me at this appointment, thank goodness. Normally your measurements correspond closely to the week of pregnancy. I was measuring well into the 20's. So casually she suggested that we do a quick ultrasound with Dr M. They gave us several reasons why my fundal height could be off such as a cyst, or being my second pregnancy. But sure enough the ultrasound told no lies, and there were our TWO babies. When two babies are seen, she said they always look for a third, and Keith just about fell off the table.

The emotions that day were uncontrollable, not that I am the best at controlling my emotions on a good day, lol. So we didn't get a lot of information initially, but Dr. M told us based on the U/S (which wasn't a very high tech machine, mainly just to find out if there were more then one baby) that she thought there was only one placenta...therefore identical twins. She booked a more sophisticated U/S for us 5 days later to learn more about the twins. They gave us some time to absorb the information. We were very excited, and shocked, but I think that both of us had the possibility of twins in the back of our minds, with my weight gain, and a family history on both of my Mom's sides of the family. Finances are also something initially thought of, as the cost for two babies seems much more then 1 with 2 cribs needed, a minivan, and everything else in two. But overall a VERY happy day.