Life In The NICU

Carter's story began on March 27, 2009. This is the very condensed version since I have practically a day by day account of Carter's entire life. If you want to read my actual posts from that time you can check out The Day Carter Was Born.

As Carter was born, I remember Carter's head appearing, and Michael saying "Oh, he's really little". I remember that striking me funny because he was so close to term. The next thought that came to my mind was that maybe my dates had been off in the pregnancy and we shouldn't have induced him. It was all my fault for going to the hospital when my contractions had gotten so intense. Then I remember the doctor looking at me over the top of his glasses and saying "I'm sorry, but your baby has a cleft lip". I remember thinking "what will people think" followed by "well that's not such a big deal". I remember the doctor's face turning white and him telling the nurse very sternly to call the NICU. Carter was delivered and taken to the table to be checked out. I don't remember much after that except that I never really heard him cry. My husband came over a few minutes later to tell me that he was also missing his ear. For a brief moment, that seemed like a big deal, but a few minutes later when they started doing chest compressions none of those things mattered. My baby was obviously in trouble. They got him somewhat stable, let me kiss his forehead, and he was gone to the NICU.
We all sat silently in the delivery room. Everyone just seemed to be stunned and numb. My Mom and Mother In Law left the room to call our families to tell them what was going on. I know that they were out there crying, but didn't want us to see.
I felt so helpless.
This wasn't how it was supposed to be.

I should be holding my little guy right now, not wondering if he was breathing or not. The next thought that I had was that we needed to get our priest there to baptize him. My Sister In Law made the phone call, and our priest was there before we had even been transferred to the post partum wing. The nurse came in periodically to give us updates on Carter, but they really didn't know much. Only that he was stable, and they were still working on him. Now, I want to make it clear that for the first two or three weeks, I had those thoughts of why us, and I wish my baby was healthy. But I can honestly say that I do not feel that way AT ALL any more. I know that Carter was a blessing to our family, and I'm so happy that God chose us to be his family. I actually feel like we are some of the lucky ones because we didn't know before he was born. We would have stressed so much! I also feel like Carter's diagnosis was a lot easier to accept because this was how he was built. There is no reason to stress or pray for a cure because this is just who he is. It would be different had he been healthy and an injury or disease created problems for him. God couldn't have given us a more perfect baby.

On the way to Post Partum, they wheeled my bed through the NICU to see him. They were bagging him at the time. It was heartbreaking to see somebody creating breaths for our little baby.

This is not how it was supposed to be.
We sat in the post partum room and waited for the Neonatologist to come in. The NICU nurses had told us that it would be about an hour, but I think it ended up being closer to two. Slowly our families started to trickle into our room. When the doctor finally came in he was greeted by a huge group of people who were concerned about our little guy. This doctor didn't exactly have the best bedside manner.

He was one of THOSE guys.
You know the ones.
The one who's got a HUGE ego.
The one who is NEVER wrong.
The one who is a SUPERIOR being.

I could go on, but you get the picture.

I remember that the room seemed really dark, and I wanted somebody to turn on a light but didn't want to interrupt him. He was drinking a Diet Pepsi out of a bottle the entire conversation. He'd pause in between sentences to take a swig, and I really wanted to knock it out of his hand and yell at him to tell me what's going on with my baby.

He started by saying that he believed that Carter had come too early. He thought that he looked to be 36 weeks not almost 39 weeks. I told him that I knew that my dates were not wrong, but he didn't really care what I had to say. I don't think that he took into consideration how small Carter's umbilical cord was either. Those things were taken into consideration later. He told us that so far they had found that Carter had an incomplete cleft lip, and a cleft soft and hard palate. He had also noticed that Carter seemed to have some paralysis above his right eye. They had done an echo on his heart and it looked fine. He then said "you know, I should probably check his Kidneys too... we'll do that in the's really not a priority". This is where Michael kind of lost his cool (yay for Daddy), and asked if we should have Carter transferred to the local children's hospital. This was the point where the doctor lost some of his attitude and told us that we could if we wanted, but he thought it was best to keep Carter as close to home as possible since he was stable. He had paged an ENT and was sending Carter's Chromosomes off to the lab for testing. As he was leaving, he told me that he thought that the medication I was on for my Molar Pregnancy could have caused all of this.

I let it sink in.
This was all my fault.

But wait! I hadn't taken any medication for my Molar pregnancy. What was he talking about?! He said "you were never on nameofmedicationthatIcan'tpronounce", and I said "No." He replied "Huh. Well, you can come and see him as soon as the epidural wears off." Thanks, Jacka**

That moment couldn't have come fast enough. The minute I could get out of the bed, we were out of there and in the NICU. They let us hold him even though he was on a vent. They also broke some of the NICU rules that night and let Michael's sister and our mom's back all at once to visit the little guy. He looked so tiny in his isolette.

Needless to say, that night I didn't sleep at all. I kept praying to God and asking him if he was sure that I could handle this. I was really nervous for the next day because Carter was having a kidney ultrasound and a hearing test. Michael had gone home to be with our other kids. I have no idea how that conversation went down with the older two, but when I talked to Jovie on the phone she told me that Carter had a sick ear and a sick lip, but that he was SO cute. They were both so accepting of Carter from the very beginning...even though they didn't get to even see him until he was 10 weeks old.
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 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 it wasn't long before I just plain loved Carter for who he was.

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 a special bottle made for babies with a cleft palate, 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.

The first day at the children's hospital was completely overwhelming. He had a bunch of tests, x-rays, and ultrasounds done on him.  We learned some new things about him, and also got some questions answered.  It was a bit of a relief to have him up there because the doctors and nurses had a lot of experience with kids like Carter. It wasn't long before Carter had four primary nurses who loved him. Each of them were a great support for us as well. We were lucky to have them.
After two days of being at the children's hospital, we got the dreaded phone call from the doctor saying that they thought Carter had gotten an infection. They were absolutely right. Our little guy had contracted a urinary tract infection which turned into Endocarditis (infection in the heart, AND Spinal Meningitis.  He was one sick boy, and had to be intubated again almost immediately. The doctors couldn't get it under control and things started looking pretty grim. Carter even started getting an infection in his kneecap where the sickness was attacking his bone.
It was bad.
Really bad.
We decided to get him baptized, and made arrangements to have the priest up there the next day. Ironically, the afternoon after Carter was baptized, his bloodwork started to show that he was getting better. It still took a long time before he could be extubated, but we got there. After seven weeks in the NICU, we were starting to see the light at the end of the tunnel. We also had a diagnosis. Carter had an unbalanced translocation between his #2 and #10 Chromosome. Click here if you would like to read more about Carter's Diagnosis.

Carter was having a hard time learning how to feed from a bottle.  We decided that in order to get him home, it would be best to put in a G Tube. It took Carter a little while to recover from that surgery, but finally, after ten weeks in the NICU we were able to take Carter home with Oxygen, monitors, and feeding pump in tow.

But we didn't care about the accessories. Our baby was home where he belonged.