Tuesday, July 19, 2011

NICU - Part 3

Some vintage Chan

This is the third in a series of posts I've written covering Channing's NICU story. This will probably be published in 6-7 posts ie it's long! Bear with me.

Read Part 1 here
Read Part 2 here

Warning, this is really tough stuff. If you're looking for warm and fuzzy, close your browser now. . .


I cried and cried and cried. And I cried some more. I cried everyday for a month. Pretty much all day long. I remember people would tell me congratulations and I would burst into tears. That was AWESOME, let me tell ya!

I wish I could say I was one of those people that immediately accepted and took on this new role bravely. That I was working on a bake sale for the local brain malformation awareness and research campaign. I wasn’t. I was scared. I was mad too. I thought I might never be happy again.

I think the NICU nurses avoided me because I was so sad all the time. My heart was broken and everyone could tell. Plus, THIS misery did NOT want company. The first month of Channing’s life I was convinced she would die. No one told us this specifically but it just seemed like an overwhelming feeling I got from everyone and everything.

Then one day around Christmas, I made it through the day without crying and Channing hadn’t died. I don’t know what exactly happened but something clicked and I knew that we could make it. I worked on coming to terms with the idea of this new normal. I had good days and bad days. I had why me?, why her?, why us? moments. I just tried to focus on loving her and my husband the best I could.

We had this nurse, I’ll call her Nurse A and I remember she was happy around us. Not that the other nurses were sad but Nurse A was really joyful. And I remember thinking “Did she not see the notes where my baby’s brain is totally jacked and it sucks?”. Of course, Nurse A knew but I guess she also knew that we needed some positivity and to focus on Channing and not just the problems she had. Nurse A rubbed off on me and I felt better. I began to focus on Channing and (attempted) to block everything else out. I worked on parenting as much as a NICU mom can parent. MG told me “all we can do is celebrate the small victories”. So that’s what we did.

Doesn’t Mean Much
Channing was doing well until they told us they thought she was having seizures. Most kids with this brain defect have seizures so we weren’t surprised. Just very scared.

They recommended an EEG. This is a test done to check for abnormal brain activity. We did one. It came back normal. They said it didn’t mean much because she was so young. Channing threw a really low sodium level around the same time. They said this was related to the defect. It could mean her pituitary gland is fused or absent. They tested her levels of lots of different hormones. All came back normal. Again they said it doesn’t mean much. Channing had genetic tests run. They came back normal. Doesn’t mean much. Channing grew at a relatively stable rate. Doesn’t mean much. Channing looks around. Doesn’t mean much. Channing grabs our fingers. Doesn’t mean much. Channing attempts to lift her head. Doesn’t mean much.

Are you sensing a theme?

Every time we came to the Dr. with “but she’s doing this and this. She’s doing really well”. He would burst our bubble. I remember him telling us numerous times “any baby with a brain stem can do that”. ei DON’T GET YOUR HOPES UP. So we didn’t.

Part 4 coming Thursday.

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