Friday, December 12, 2008

Christmas Cards


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.

Monday, November 17, 2008

The "warrior" in myself

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.

Tuesday, October 28, 2008

Jenn's rant #6

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.

Friday, October 10, 2008

RSV season

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??

Thursday, October 9, 2008

Remembering

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"

Tuesday, September 9, 2008

The End and the Beginning




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!!

Friday, August 29, 2008

feels like home

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...

Tuesday, August 26, 2008

Our day is coming

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.

Thursday, August 21, 2008

Happy 100th day

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.

Wednesday, August 20, 2008

Jenn's rant #5

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.

Friday, August 15, 2008

Saying goodbye to NICU buddies

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.

Tuesday, August 12, 2008

Alyssa's caffeine addiction

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.

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 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.

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 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.

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 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 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 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.

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 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!!!

Monday, June 30, 2008

The dreaded phone calls


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...

Tuesday, June 24, 2008

The big baby on the block

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.

Sunday, June 22, 2008

Jenn's rant #3

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.

Saturday, June 14, 2008

Baby Jessica was given her wings


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.