The Upside of Down: Nine days in NICU

Before I had Carson I asked my doctor if he would be taken to NICU. My doctor reassured me that he would not be rushed down there just because he had Down Syndrome, however they would be looking at him extra closely. Since we knew the diagnosis ahead of time, we had already had an ECHO done in utero and Carson's heart looked fine! That was a big relief because there can commonly be heart problems in children with Down Syndrome. In my mind, there would be no reason for Carson to have to go to NICU he obviously was not a preemie and his heart was fine :) After I delivered Carson was a different story.
My doctor had told me before Carson's arrival that she wouldn't use any extreme measures to get him out, if that happened she would just do a c-section. Well, during the delivery that changed. Since he had dropped down so quickly she wanted to get him out as quick as possible. After pushing, she told me that she wasn't a liar but she was going to use the vacuum to get him out. That was fine by me :) Once he came out his chest was flexing very rapidly and everyone seemed concerned. No one would tell us what was going on but I did hear them say to call NICU. What was happening?? Why did NICU have to be called? My husband kept asking me if he was OK. I didn't know what to say or how to answer. I just kept my eyes glued to Carson. His respiration was really high. They told me that they would take him down to NICU and we could see him in just a little bit.
After all the excitement of just giving birth to my son, all of a sudden I was in an empty room with just my nurse and my husband. I was in disbelief. One moment ago was pure joy, and to be quite honest this was pure hell. My nurse assured me we could go see Carson very soon, he just needed to get checked out down there and then we could go. She got me cleaned up and we moved rooms. They have a seperate floor for mothers who have just given birth. The rooms are all set-up to have the baby's in there with you. Obviously we did not get to bring Carson to our room. I was hopeful that we would end up getting to bring him up there, but that was not the case. In a cruel twist of fate, I would be back in this same exact room 10 months later after "delivering" Dylan. That is another story though...
When we got to the new room, our family members started to trickle in. It was obvious no one knew what to say and everyone was trying to make me feel like "every little thing" was going to be alright. Bert kept saying that this is for the best, he is going to be getting watched & treated by the best there are. It made him feel better to know that they were checking him out to make sure everything was fine. It did not make me feel any better, all I wanted to be doing was bonding with Carson. All the things I have seen all the other new mothers do. I did not want to be laying in a hospital bed in a totally different part of the hospital than my son was at.
Finally, a few hours later the nurse told me she would take us down to see him. I was so excited. I had never visited anyone in NICU before so it was a whole new experience for me. We had to scrub in with the soap, that after a few days made me knuckles bleed from using it so much, and put the yellow gowns on. As I was wheeled in, because I was a fall risk from the epidural still, it was hard to take in what all I was seeing. There were babies with IV's coming out of their heads and the baby next to Carson's little bed had Happy Mother's Day cards hanging from above it! My child had only been in here a few hours and I wanted to break him out and this child had been in at least 3 months! It was hard to comprehend. I saw my sweet boy laying there and he already had an IV in his little hand. He was only a few hours old and he was already getting used to his life of having IV's in. The nurse was showing us what all to do. They are all about "touch time" they call it, where you check their temperature, change the diaper, wipe their eyes, etc. before you get them out to hold. We did all of that as carefully as we could. Not only were we cautious of him being a newborn we had the IV to worry about. They had him hooked up to all sorts of monitors to check his oxygen stats and respiration.
When I held him all my worries went away, there he was, my sweet angel baby :) Bert was more hesitant to hold him. Where he had been the pillar of strength earlier, now he was so worried about holding him with all this stuff attached to him. The nurse explained to us that they needed to monitor him, because he came so quickly down the birth canal and out, he did not have time to get all the fluid pushed out of him. Also, he appeared to be jaundice and it was a concern to make sure he gets adequate nutrition. We would learn later that is a big thing with baby's with Down Syndrome. Due to the low muscle tone they won't take in enough nutrition in the beginning and that can affect their development. In all the books I had read to prepare me for his arrival that was one thing I had never read.
Eventually we got to bring family members down to see Carson. And then it was time to go back to the room to rest. I remember wanting to know when I could come back to see him. Everyone told me to go up and get some rest and that Carson was going to be resting as well. When I got back to the room, in typical Heather fashion, I checked my emails and the Facebook messages were pouring in. Everyone congratulating me on Carson! I didn't know how to announce to everyone that Carson was in NICU. We hadn't even made the announcement on there about him having Down Syndrome. I think the reason we had delayed the Down Syndrome announcement in part was because I didn't want people feeling sorry for us, this was not something we were sad about. Of course it was not what we had expected to happen, but it's what we got and we loved him more than ever. When we found out all sorts of people were telling us how amnios have been wrong and everything would be fine. I knew that this was not the case, Carson did have Down Syndrome and the earlier everyone accepted it the better it would be :) Anyways, later that night I would put a post saying that Carson did have Down Syndrome and we were so blessed that we were chosen to be his parents! He was our perfect boy and his extra chromosome just made him that much more special to us :)
Right away I started pumping so even though Carson wasn't able to stay in the room with me I wanted him to be able to still have breast milk. Things did not go very smoothly at first. I was having trouble with anything coming out and getting it into bottles. Later I would realize that the first bit of milk they call "liquid gold" and to save whatever you get. I had already lost some of it by spilling and not knowing it was worth keeping. I literally remember having "bottle envy" when I would go down to NICU to drop off my pathetic bottles and I would see women bringing in bottles filled up. Eventually after a little power pumping and kangaroo snuggling with Carson my milk did come in. When he got discharged from NICU I had buckets full of milk! So for any of you out there that have doubts it will ever come in, it does, it just takes some time :)
After two days, Carson got moved into the Progressive Care Nursery which is the step down from NICU. This was also the day that we were getting discharged from the hospital. Never in a million years did I think I would be having to leave the hospital without Carson. That was an extremely rough day. I had gotten used to the fact that he was in NICU but in my mind he was leaving when we were leaving. We live an hour away from the hospital and besides that I could not bear the thought of going home without him. Seeing his nursery and not having him there with me was out of the question. I'm pretty sure there were tears streaming down my face as I got wheeled out to my car. It was hard enough him not being in the room with me, now I wouldn't even be in the same building! My mom and Mark had gotten a hotel room to stay in while Carson was born, we stayed there for the next week with them.
Every day we would go to the NICU and feed Carson his bottles from 8 in the morning until 8 at night. It was very difficult to get me to leave. I would just sit out on the couches waiting for his next feeding. I would pump in the private room in the NICU and drop off bottles constantly. I would only leave him while he slept. While he was there he went through numerous IV's, it was even discussed doing one in his head. Although I have learned now that is one of the best spots to use for a baby, the thought of it made me weak. Luckily he did not have to ever have that done.
The breathing problem he had at birth was completely gone now and everything was fine on that end. The main reason we were still there was getting him to eat as much as he should, and to get his bilirubin down. Another concern was that he had not had a bowel movement. Finally on day 3 he had one. Later we would find out this was because he had Hirschsprung's Disease. Carson had a feeding tube put in to push whatever he had left in his bottle. Some feedings it was a struggle to get him to take a few ounces. The idea that getting him to eat was ever a problem is laughable now! You should see this kid go :)
It's hard to remember exactly what happened each day in there, I just remember it had become our normal. Living at the hospital from 8-8, then going to the hotel eating dinner, and going to bed. One morning we were running late to get to his 8 feeding and I was distraught that I wouldn't be able to feed him! We made it on time and all was well. Things were starting to look up, Carson just had to go 24 hours without having to use the feeding tube and he could go home!! His bilirubin was normal so our only issue was the feeding. The nurse practitioner had come in and told me she thought Carson would be able to go home the next day!! I was elated. He was doing great feeding, Bert and my mom had even gotten to feed him :) I could barely sleep that night knowing that I would get to take him home. The next morning I got there right on time, scrubbed in and walked over to his bed and looked at him and saw that the feeding tube was back in!! I couldn't hold back the tears, I'm not one to cry in public but I was too heartbroken. I had my heart set on taking him home and now it would at least be another 24 hours. All of the amazing nurses in there felt so bad for me, and the head nurse that we loved offered to let me & Bert stay in the nesting suite so that we could give Carson all of his bottles since he seemed to feed best for us. The nesting suite is a room reserved for families in NICU to stay the night before their babies get to go home with them so that they can stay with the baby but the hospital staff is right there if help is needed.
So there we were, the Clampett's moving back into the hospital. We got up and fed him every feeding, me and Bert taking turns. It ended up taking us two days later when, at the very last minute, we were finally able to bring Carson home. After he passed his car seat test, we watched all the videos, and he had been eating great, he almost didn't get to go home because he hadn't gotten his hearing test. They tried to come but the nurse was doing something with him so they told them to come back. Here it was a Sunday evening at like 5:00 and they were saying that they had already left the hospital and we couldn't take him home, again. In a scene that had become somewhat familiar I was sitting there with Carson in my arms tears streaming down my face. I could not believe this was happening again! Bert looked and me and said I promise you he's coming home with us. Not an hour later, the lady from the hearing test was wheeling her equipment in to do the test. Bert had gone up to the floor where we had been after Carson was born, talked to the nurses there (that we loved) and ended up getting the number for the director of the hearing test company. She called the lady who had already left and gotten home and she graciously came back up to the hospital to do Carson's hearing test. I'll tell you there probably was not a moment in time where I was more proud that Bert was my husband and Carson's father. He was not about to have me be let down again and he delivered on his promise! I just knew there was no way, we would have to wait until Monday morning, but Bert was determined to make it happen.
After 9 long days we got to bring Carson home! Our families were here waiting for us and it was so strange doing everything here at our home! We had gotten so used to doing everything in NICU. I felt like nothing was in the right place here! That night Bert did not sleep a wink, he took the night shift and stayed up with him all night long!
I still cherish his time in NICU even if the entire time I was wishing he was home. The nurses in there will be in my heart forever. They were some of the most amazing women I have ever met and truly loved Carson just as much as we did. They made the entire experience as easy on us as it could be and I knew when I wasn't there with him he had wonderful people who were. If this world was a better place, nurses like that would be getting paid what athletes do (along with teachers!! :) We were only home with Carson 16 days and we wound up back in the hospital, but that's for another post :)