Sunday, March 6, 2011

Adeleine's NICU Story: Part 4

Stop this ride, I'm scared and I want to get off!

Part 4: Dealing

So how did I take delivering a 2 lb baby 13 weeks early? In short, not well. But apparently this is normal.

Lots of people said "Congratulations!" right after she was born and I would spit out a half-assed "Thaaaaaanks." It just felt weird. In my head, I would finish their genuine congrats comment with a sarcastic "Congratulations, you had a baby three months early and she's in the hospital- way to go." It was hard for me to feel joy about the situation. But people would tell me how to feel: You should feel happy you had a baby! You should feel happy, you should feel happy, you should feel happy. Well, shit, I didn't feel very happy. I felt a lot of things but pure happiness was generally not one of them. Not for a few months anyway.

I spent the first 5 or 6 days in denial. Or shock. Or ignorance of the situation, not sure which. I argued with the HR lady to try and let me come back to work part time, since my baby wasn't at home, of course I could work! How the hell I thought that I could work with pumping every two hours I have no idea. But, hey, I'm sure HR ladies have to deal with the incoherent ramblings of hormonal new moms on a regular basis. And could the government make applying for benefits any more complicated? Sleep deprived, in shock, hormones all out of whack and expected to fill out forms completely and in a timely manner (ie immediately after the birth, regardless if you are still hospitalized yourself) is frankly asking too much of new moms. Oh and if you make a mistake you don't get any money for the rest of the year. No pressure. I was stupid. My brain was not functioning at a normal level of intelligence. It was like asking a crying 5 year old to write a novel. With the help of Andrew, my logical, rational hubby, we managed to figure everything out. But it was sooooo difficult. Ugh. Not what we wanted to focus on while our baby was in the hospital.

During this first week, while living in the land of denial/shock/ignorance and government forms I was in the process of recovering from delivering an abrupted/infected placenta, which not surprisingly, eventually resulted in an infected uterus. The doctors warned me about this before I left the hospital (I had been there for a week), told me what signs to look for, but it wasn't until I was feverish, that I thought perhaps being hunched over walking at a 90 degree angle for a full day wasn't entirely normal. So, after being home for only a day and a half, back to the hospital I went for more antibiotics. This may have been the 6th antibiotic. I lost count really. My body was just a giant infection. I spent 8 of her first 9 weeks sick with some infection or cold, I basically had no immune system left. I swear if I had lived 100 years ago I'd be dead and Adeleine too, so thank goodness for modern science.

So, like with my previous pregnancy, the post-pregnancy hormones kicked in around day 5. Constant crying. CONSTANT. I cried doing the dishes, having a shower, pumping, eating, lying down, whatever, wherever, crying, crying, crying. I knew this was coming. Except with this pregnancy the crying didn't end after a couple of days. This was different. It wasn't just hormones balancing. My kid was in the hospital, fighting to survive and I was at home most of the time, sick and trying to process what the hell just happened.

I went through many stages, the first was grief. I was grieving for the loss of the perfect pregnancy, of delivering a healthy term baby. I was grieving for the loss of all that went with that, seeing your plump bundle of joy, holding her in your arms, breastfeeding her and going home a happy family. I was grieving the loss of my child entirely, since I had convinced myself, through the wonders of google, that the infection had caused her severe brain damage and that she would spend the rest of her life unable to move, unable to communicate, a shell of a human being, suffering. Thanks internet. I mentioned before that the internet should have a NICU-mom filter. NICU-moms should never ever go on the internet in the first month. Whatever their fear is, it will be confirmed through 'facts' found on the internet. You can always find some study published in the journal of whatever that will tell you your worst fear is real and your child is doomed. I spent hours and hours on the internet searching the effects of infection on babies and you know what? None of it is good news. Infections are bad. There is no study out there that is going to say, you can have an infection and your kid will turn out perfectly fine, so don't worry and go back to bed.

Then came the guilt. The feeling that I was completely responsible for this situation. Another preemie mom who experienced this immense guilt described it as "We were the ones that were supposed to carry the babies to term." That was our job. And we failed. For whatever reason, we failed. I couldn't hang on to her. My body failed us. I failed us. Maybe it's not true, but that's how we feel. The guilt just hangs over you.

But the grief and guilt are nothing, nothing at all, compared to the fear. The crying and the grief and guilt were stages, they lasted a few weeks, then subsided. The fear lasted for months. The fear was constant, but, especially at the beginning, several times a day, it would wash over my whole body and it felt like all the blood was running out of my feet. I have never been so scared, rattled to the bone, all the time. My mother, understandably freaked out by my crying breakdown in the early days, labeled me as depressed. Call it whatever you want, I was scared. Scared, scared, scared. I was walking around trying to function while teetering between being convinced my child would have no quality of life and fearing she would die. Which fear should we think about today? Pick one! Because of the overwhelming fear, I couldn't really squeeze out the happiness that people were looking for.

Meanwhile, outside my head, life was still going on. Adeleine was fighting to gain weight and remember to breathe in the NICU. Liam was being his cute 2 year old self. Andrew was trying to take care of all of us. Before this all happened, I was that annoying overly-optimistic person. Glass half full? OH YEAH! And the other half was filled with sunshine! That kind of a person. After the birth Andrew became Mr. Optimist, telling me not to waste time worrying, listening to my fears and telling me why they were irrational. My sister Katie was my rock. She supported me throughout the whole ordeal and listened to my crazy talk every single day for months. She went with me to the hospital to talk to the nurses about my fears - she was, quite simply, her amazing self. Andrew and Katie picked me up and got me through it all. I will always be grateful to them. And my Liam. Seeing his smiling face everyday made me melt with joy, it was hard to be scared when there was a cute little goofball around, who just needs you to be his mom.

For me, the thing that would instantly ease my mind was fact, evidence, proof.  I just needed to know, one way or the other, so I could stop being afraid and just deal with it.  The problem was, I was getting all sorts of terrible facts and stats from websites and medical papers and journals - not from what was actually happening with my baby.  Finally, I asked for another meeting and presented some internet 'facts' to Adeleine's doctor and she said, yes, those are the statistics, but that is not happening with your baby. She repeated "Not YOUR baby." about six times during our discussion until finally I got it and stopped saying "Yeah, but I found this article that says...".  After that conversation I felt as if a weight had been lifted from my shoulders. I had been carrying those fears for over a month at that point.

Talking to other preemie moms over those first months, was so incredibly valuable. Through talking to them I realized that my feelings were normal for someone who had been through this and everything would turn out ok, however it turned out. Whatever happens, we can deal with it. I mentioned this book before, The Preemie Primer, and not only was it filled with a ton of reliable preemie facts (which is exactly what I needed), it had a section in it about emotional health that was really important for me to read, to know, that what I was going through was all totally normal. But it was my friend Cindy who had the most comforting yet simple words for me, during the time when I was wondering how the hell I'd cope, "You get through it. You just do." Hearing that from her, a mom of beautiful preemie twin boys, gave me strength. I would repeat it over and over again. We'll get through this.  She also told me that the blood curdling fear would eventually happen less often. Time, she said, that's all, just time.

As the days came and went, Adeleine grew and began to knock down barriers and pass her milestones (the good and the bad) and my fears diminished - SHE was my proof that things were going to be ok. I finally looked at her and thought, to hell with what those stupid studies say, Adeleine is proving them wrong. No study or general statistic will tell me what will happen with my daughter - only SHE will tell me. So I stopped doing my own research and I just believed what her care team was saying.  I still get the wave of fear and the blood pouring out my feet feeling every once in awhile, but it is so infrequent now, partly because she is doing so well, but also because I think that whatever happens, after what we went through, I have more confidence now that we can deal with it. However things turn out, we will all be alright. But I just have to stay off the damn internet research.

Once Adeleine approached term and was close to coming home, I was ridiculously super excited! When people said "Congratulations!" I gave an honest to goodness "THANKS!" with a giant smile. I was so proud of her progress - she was amazingly strong! Stronger than me in fact. We had bonded in our "Care by Parent" room in the last month. When she came home it was such a relief. It was like THAT was the day we really could celebrate! I could not have been happier!

So today, I feel older. A bit like I've been through some weird torture for three months and I have recovered. My hair went gray in the front. I don't think that's a coincidence. But, my god, am I happy now. Happiness without fear overshadowing it is the best happy of all. There was never a question in my mind about how grateful I was that she was here, she was alive, she was our beautiful child.  But for so long, the fear was just too overwhelming to let me feel the happiness that was there all along.

Cindy was absolutely right. Somehow, you get through it, you just do.

But I didn't do it alone.
So I'm sending a heartfelt thank you to everyone I talked to and leaned on during those crazy months in the NICU, especially my wonderful family. I needed you and you were there. Thank you.

*Please note that this blog is not medical advice. It is simply our story.*

Next Post
Part 5: Weeks 3-8

Previous Posts
Part 3: Weeks 1-3
Part 2: The First 24 hours
Part 1: Labour & Delivery

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