In honor of Prematurity Awareness Month, I am attempting to write a post a day (with the exception of power outages). With select posts, I hope to address a different aspect of our prematurity journey that non preemie parents may not realize.
Non NICU parents have difficulty understanding what the experience is like for new parents in the NICU. Recently, I had pulled up the emails from Charlie’s first month. Maybe, being able to read them is a sign that I’m starting to move on. I don’t think I could have looked at the letters a few months ago.
Other than removing identifying information of the other person, this is what I wrote when Charlie was in the NICU. I hope it helps others understand what the experience may be like for new NICU parents.
When Charlie was seven days old…
Today was a good day. It was nice to be able to sit with Charlie and just watch her. I understand what you mean about not knowing what to do with yourself when your baby is so close. I could sit with her all day. I couldn’t imagine spending my days at home right now. Mostly, I read while periodically staring at her. The really good part of today is that I got to touch her for the second time. The nurse taught me how to take her temperature and change her diaper. I felt kind of awkward, clumsy, and scared to death but so happy to be able to touch my baby. Practice makes perfect, right?
Overall, I am feeling much better each day about things. The fact that Charlie is doing better helps a lot too. It’s funny that —– took off her cpap. Charlie does that too. Before Charlie was born, she was very active. We used to laugh when she would kick back while getting an ultra sound or checked by a doppler. She still is very active. They are increasing her feeding amount regularly. She had her first bowel movement today. She has yet to gain weight but they have been feeding her a miniscule amount to see how her digestion would do.
We haven’t gotten to hold Charlie yet. The nurse said that when they put in the line that goes from her hand to her heart (not sure if I heard her right as to what that line is or does) that we would get to hold her. That should happen in a few days. So far, so good with Charlie. Charlie’s dad is doing better today too. His company sent a few meals (with side dishes) to us. Eating well with little effort boosts our spirits.
I’m glad you told me about the brain fog. I will try not to get frustrated with mine. Sometimes it’s like I’m a deer in headlights when someone talks to me. On the other hand, my husband has really been amazing. He talks to the nurses and the doctors in the NICU and asks questions. I feel like I turn into a stunned, bumbling idiot. When I get near Charlie, I don’t know what to say or ask. If there is something I want to ask, I have a hard time finding the words to ask it. Mostly, I cry.
He’s been showing pictures and announcing her birth to just about anybody… even the pharmacist in the drug store. I have been having a much harder time. Whenever I see someone, I pray they don’t talk to me.
I see my doctor this week to have my blood pressure medication adjusted. I was just curious as to if there was anything at home that helped to reduce your blood pressure. Yoga? Dietary restrictions? Anything? When did your blood pressure return to what was normal for you?
One day down… we’ll see what tomorrow holds. Fingers crossed!
A month later….
I’ve been having a rough go of it. I don’t know how much of it was post partum and how much was situational. I’ve talked to a couple of moms and that helped immensely. Also, this guy we know has siblings who were preemies. Talking to him has been helpful.
One of the moms that I have seen around the NICU has consistently had this look on her face that I figure I must have been wearing as well. It was obvious to me that we lived in the same desperate world. I had the opportunity to talk to her as we were washing up to go in. Her baby has a chromosomal issue. She rattled off a list of what implications this may have and the medical issues her baby faces. They were pretty severe. The striking part of the conversation is that she finished by saying “But she’s so sweet.” It seemed as if she had gotten in the habit of justifying her love for her baby. I felt for her. It was also the point that I consciously realized something that deep within me I already knew. It doesn’t matter to me what disabilities or whatever Charlie may have after all this. It doesn’t change that she is my baby and I love her. Just as with anybody, her life is what we choose to make of it. It really made me feel better realizing that.
I’m suffering from a bit of cognitive dissonance where what I think doesn’t correlate with what I sometimes feel. Even though, I don’t want people to have bad pregnancies or sick babies… I, too, get angry when someone brags to me about how they smoked through pregnancy. The other day during one of the classes a mom said in a moment of enlightenment “Oh! You are supposed to go to the doctor before baby is here?” I found myself asking silently, “How am I in the same boat with her?” I even got my teeth examined before I tried to become pregnant. Logically, I don’t want to think I’ve been better or I’m more deserving of a healthy pregnancy than the moms that drink while pregnant or whatever the issue is. I know better than to judge someone else. I have no idea what their journey is about. But emotionally, I find myself throwing a tantrum like a little kid and saying “It’s not fair! There are so few things that I’ve done right in my life. This one I did as flawless as anyone could. Why did it work out this way? Why does my baby have to suffer?” I know it’s petty, short sighted, and selfish for me to feel this way. But I can’t help the feelings that I have.
I’ve conveyed these feelings to that guy acquaintance (after all this, he is now a friend). He really can’t do much other than just listen. Sometimes that’s all I really need… so few people are willing to do just that. Also, he will, to the best of his recollection, tell me what it was like for his mom. He does all that while refraining from regurgitating a well intended adage. When I told him about how my emotions and what I think don’t sync up, he responded “… so it’s kind of like heartbreak.” In a weird way, he was right. His naming it made me better able to cope with it. I am not sure if it was heartbreak over how my pregnancy didn’t occur as I imagined or heartbreak over the reactions from others. After that, it didn’t eat at me as much. I know that with heartbreak… time eventually makes it bearable. This too will fade. In fact, it has already started to.
Thinking about all this I remembered that through out my life, I’ve always told myself that I can’t always control what happens to me but I can choose how to respond to it. I find myself in that kind of predicament again.
Charlie has regularly been taking steps forwards and backwards. They try to move her forward and it seems for a short while she can do it. But many times, it turns out she’s not quite ready. I’ve started doing kangaroo care with her almost every day. As often and much as she will tolerate. Up until about a week ago, I would only get to hold her or do kangaroo care once a week. The last time I was able to do it was on Friday. She can tolerate up to an hour and a half so far. When the nurse picked her up off of me, Charlie cried out and made a hand motion in my direction. It was equally as sweet as painful.
That evening, I went through the daily ritual of meeting Charlie’s dad in the waiting room during shift change after he got off of work. I told him how great Charlie was doing and how great Kangaroo care was that day. We went back to see her after the shift change as usual. There was a nurse working on her. She informed us that Charlie just threw up (she is still getting her food transpyloric), is destatting, and her stomach was huge and hard. She called the doctor while we returned to the waiting room. I know NEC is a chance. However, my confidence has been shaken since preeclampsia is a small chance and severe preeclampsia is an even lesser chance. After what seemed like forever, the nurse explained that they put in a tube and quite a bit of air came out. They think the whole problem is that the CPAP blew air into her stomach. So we are in the wait, hope, and see stage. We just got home a few minutes ago and things seem to be going in our favor. Up until about last Monday, they had one of those drains in her stomach to let the excess air out (I forgot what the term is for it). They had to take it out recently because as her feeds increase it started to suck the food out as well as air.
The last of the long term NICU moms that were there when I got there have gone home. Some of the other moms that have arrived during my time are getting ready to go home too. I’m happy for them. I expected to feel some kind of envy or something. Not really. I think it will have more of an impact when I see some of the moms go home that I have seen arrive.
Often, people say that I should just spend a few minutes each day with Charlie. I am sometimes confronted with the argument that Charlie won’t remember. I have to explain… I’m not there for her because I expect her to remember and be forever indebted to me. It’s because right NOW she knows when I’m with her. It is about the only thing I can do for her right now.
In the midst of everything, I wonder if I’m losing my mind or if everyone else is inhabiting a different planet or something. I have never felt so disconnected from others around me.