Does life even really go on outside when you're stuck in the NICU? Do people still go about their normal routines? It's extremely hard to imagine.
They were going to have to do surgery on Micah to see how long a segment his Hirschsprung's was. Despite being told that it was probably going to be a long segment, I was almost delusional with hope that it was something that they could fix in surgery that day, and we would never have to deal with it again. I spent the whole ride home telling my dad and Urian exactly why it was going to be short. The reasons included that the odds were in our favor, the surgeons had said that it was uncommon for it to go long, that after being stimulated Micah had been able to pass stool. I babbled on the whole way home, and after getting into bed I continued into the late hours talking about how things were going to go our way. I needed this hope to get me through the night and to give me the strength to send my newborn son into surgery.
The next day we woke up early and went straight to the NICU. Waiting for surgery was almost unbearable. I prepared myself, and then when it took longer I would have to prepare myself all over agian. This went on for about three hours before they told us that they were ready. I kept kissing my son and telling him how much he was loved and that it would all go okay. I told myself that I was doing what was best for my son, and I still believe that this is the best option in caring for him. We met the anesthesiologist and signed lots of consent forms, reading over them carefully. We met a nurse who would be helping the surgeons, and I got to ask my last minute questions.
Right before they wheeled him into surgery, we were told to hope for a short time. The longer the surgery took the longer the segment was. So we made our way to the waiting room to wait. My dad and Urian's mom and sister had already arrived and were waiting there. Let me just say, I love my dad. And I love my in-laws and the way that they have accepted me into their family. Their's is so different from my family, but in such a good and beautiful way. They've let me be shy and awkward and they patiently waited for me to break out of my shell without pushing it. That being said, I would have preferred both sides of the family not be there. I'm a very private person and I find it humiliating to cry in front of just about anybody but my husband. I can't sleep, cry, talk about things I'm worried about, and many other things in the presence of people other than my husband. For me, his surgery was such a private moment that I would have preferred be spent with my husband. I know that they love Micah as well, and unless it isn't what is best for Micah I want both sides of the family around him. It just made it harder for me personally, though. It's the same reason I told Urian months before Micah was born that there was to be nobody at the hospital even in the waiting room when I was giving birth. My privacy was already thrown out the window in many ways that birth requires, it was one way I could muster even a little dignity and privacy.
So we waited all together in the waiting room, and time went by so slowly. It was taking so long, we tried to estimate how far up the colon they must be, and I was sure he would have none left when we finally got a phone call. People... never hope for news in the first phone call. They were only calling to tell us that they had just begun. So we timed it all over again, relieved that it hadn't actually taken that long and hoping for a shorter time. Except that a half hour into an hour, and then into two hours. At two and a half hours we finally got a call. The news wasn't what I was wanting to hear. Micah's Hirschsprung's effected half of his colon, and they were not going to be able to do the surgery to cut out the bad colon and reattach until months later. Micah was going to need a colostomy to give him time to grow and prepare for the next surgery.
This news was heartbreaking to hear. I have a mom who has many health problems, and part of those means having an ileostomy. I've seen how much this has impacted her life, and how she doesn't like to go out in public because of it. It's always leaked at the worst possible times, and overall it's just been a pain. I didn't want my son to have to go through that, always wondering if he can play certain things without his bag leaking on everything.
Since we couldn't right away see our baby, I looked up everything I could. I found everything from football players having colostomy's to artists and teachers. This was extremely reassuring, and even though I was still sad that it wasn't a short segment that they could fix the same day. They let us in to see him, and to say it was hard doesn't even give it justice. A tube was breathing for him, he was on pain meds, he had two incision sites on his stomach, and part of his colon was cut and brought to the surface and sticking out of his skin. Seeing it on my mom hadn't prepared me quite as much as I thought that it would. Seeing something like that on a baby, and my son, was difficult.
He didn't even wake up till the next day, and as shown above they took out the ventilator (after a rough night of not knowing if they'd make their 24 hr goal of taking it out) and he was... 'awake'. He was in pain, and couldn't even suck on his soother because he just didn't have the energy. He was still on oxygen, and his sats staid at about 80, his heat rate often elevating because of the pain. They dressed him in a shirt, but lifted it over the stitches and stoma. They had yet to put a bag on his ostomy, and just kept vasaline gauze over it. He still wasn't allowed to eat.
Over the next few days he woke more and more up, got even more upset that he wasn't allowed to eat, and we learned how to put a bag on and dress his ostomy. After a couple of days they were able to turn off his oxygen, and his TPN was replaced with an NG feeding tube. I was allowed to feed him pumped milk, but he had a lot of trouble latching onto even a bottle nipple. It was decided that we were going to clip a tied tongue that he was born with since he simply wasn't eating.
We thought that would fix the problem, and it did help a little, but my little guy had gotten too used to the NG tube doing the work for him that he refused to work for it. After he had been in the NICU for almost a month, they decided to finally take out the tube and let him do the work and feel the hunger. It worked almost immediately, he didn't lose any weight, and he was able to go home two day later.
Yes, that's literally all. Yes I jumped from a few days to a month. But honestly that's how it happened and there isn't a lot to say. Micah just refused to eat by mouth for weeks and because of that we couldn't go home. If that's frustrating to read, imagine how frustrating it was to live it and know that he could come home, that he was healthy enough to be home, but he just wouldn't eat and there wasn't a thing you could do about it.
I will upload a few of the pictures I took though.
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