Wednesday, July 30, 2008

Day 80 - 37 weeks....

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 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 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'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.

Tuesday, July 29, 2008

Jenn's rant #4

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 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 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.

Saturday, July 26, 2008

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

I read this on a facebook site and also on the 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 clich├ęd 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.

Wednesday, July 16, 2008

Moving Day

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...

Monday, July 14, 2008

Special Moments

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 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 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.

Tuesday, July 8, 2008

Where there is a will there is a way

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 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 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!!!