January 16, 2010

Carter's First Few Days

The next few days were a blur.  I remember that the next day I went over to the NICU early.  Carter was extubated and put on a low amount of Oxygen.  I remember that we were really happy about that, but he did end up back on CPAP sometime that day or the next.  They did the hearing test, and the tech kept having trouble with the machinery, so we had to wait for a new machine to be brought up.  When they finally had the right machine we were told that he was profoundly deaf in each ear. It wasn't until we were transferred to the children's hospital that we found out that things like Oxygen can screw with a hearing test like that.  After we got the news about his hearing, I kept telling myself that I could definitely handle this.  I could handle having a baby who couldn't hear...as long as he could see. I kept praying that Carter had sight.  In fact, I prayed for this like crazy for weeks even though the Opthalmologist had said that he didn't see anything wrong with Carter's eyes.   I also began to realize that there was a real possibility that he would have issues with his Cognitive ability.  I don't know why, but this was the one area that I had a very hard time accepting.  It was by far the hardest of Carter's disabilites for me to swallow, but I have a new outlook on it now. I know that he is amazing, and that he's going to do amazing things, so that's all that matters.

 I changed his diaper for the first time that day too.  It's funny that with my other kids I remember things like the first time I held them or the first time I gave them a bath, but with Carter I remember the first time I changed his diaper because that was pretty much all I was allowed to do while he was on CPAP.
They did the kidney ultrasound which happened to be done by the same tech who had done my prenatal ultrasound with the Perinatologist.  It didn't make me trust their findings too much.  The ultrasound showed that his kidneys were abnormal.  Instead of having a kidney on each side of his body, he has both on his right side. There is a small one on top of a larger one.  The good news is that they both work great, and we've been told by the Urologist that he has no reason to believe that they won't continue to work well, but we still get them checked every six months to be sure.  The same Neonatologist was there all day and most of the night.  He had softened up quite a bit since Michael had stood up to him the day before.  He had called in an ENT who was absolutely WONDERFUL.  He went through each of Carter's issues and explained how they could be fixed with surgery.  He also told us that he thought it was possible that Carter had BOR Syndrome. This was good news to me because typically there is no cognitive disability with it. Of course we later found out that this was not what Carter had, but it still felt good to have some sort of answer. 
I spent most of that night in the NICU.  There were some really good nurses in there. One in particular had dealt with a lot of cleft palate babies and was very supportive and helpful.  I went home the next morning even though my doctor had offered to let me stay another night.  I really wanted to see Mikey and Jovie.
The next few days were just a lot of waiting.  They tried feeding Carter with the Mini Haberman (a smaller version of the one below), but the nurse only put the milk into the nipple without hooking the rest of the bottle to it, so there was absolutely no way for Carter to get any milk out.  I didn't know that at the time, but looking back it makes me laugh.  He started having troubles digesting his food, so the decision was finally made to move him to our local children's hospital which was one hour away.  We made the big move on April 1st.


Lacey said...

Its so hard to deal so suddenly with a sick baby you had no idea about. I remember it taking me forever to recover from having Jax. My back hurt for weeks. Now I know it was because I was walking up to the NICU every day, and not resting. Us moms of these special babies definitely deserve a medal!

Anderson Family said...

I love reading Carter's story. Funny how you remember changing the first diaper. I remember that as well. I also remember gently lifting my Carter up so they could replace the bedding underneath him and that was as close as I could get to holding him. We do go through a lot when we welcome these special kids into our lives.....

ANewKindOfPerfect said...

Thank you for sharing Carter's story with us. It's nice to hear things that are so familiar, and knowing we're not alone.

I posted a picture on my blog as a result of reading your blog. Come take a peek. :)