It's not fair.... but it isn't supposed to be.
Some people end up dying during labor, and sometimes your sweet baby, who never had a chance to live the life you mentally hoped for them and planned for them to have, ends up living only a few moments. It's scary. Luckily Micah's story isn't over yet. We're lucky that we have good doctors and we live in an age where we have the knowledge and technology to help him. So here is how the next few days after giving birth to my beautiful, perfect son went.
We went to the maternity ward an hour after Micah was born. It wasn't much, but it was home for the next three days. They told me that I had to stay the full three days because of a difficult delivery. We didn't care that we had to stay, we had something worth being anywhere for. I spent the rest of the night doing skin to skin with Micah. It was quite possibly as overwhelming of an experience as giving birth was. I loved feeling him against my skin. He was so silky smooth skin, and the sweet smell of his head. I cried and I laughed, the happiest I had been in my life. I was so happy to have my caring husband by my side.
And can I just give a shout out to my husband? When I was pregnant we struggled with money, but he wouldn't let me work. With the complications I was having, he made sure I stayed in bed most of the time. Sometimes that meant him taking me by the shoulders and directing me into bed. Urian would sit there when I got so overwhelmed with hormones that I would yell and cry and not know what to do. He would sit there and listen to me yell at him, let me blame it all on him, and then he would hug me tightly and, and yes, direct me to bed where he would rub my back until I felt okay again. This man drew me baths every night to help with the pain, he brought home dinners when I could no longer cook, and he would run out in the middle of the night to get me the food I would crave. He would watch me take a few bites before I got sick, and then hold my hair as I inevitably threw up. He would never get mad that I hardly ever finished the foods I craved. Urian is the most loving and understanding man I know. I am incredibly lucky to have him, and I know this. I am constantly reminded of this fact as he continues to be an incredible father and husband to me and Micah.
Anyway, back to Micah.
Nothing seemed to be the matter until the next day. Infact, they said they rarely see babies who nurse so well or babies as attentive and happy as he was. The next day, though, we felt like something wasn't right. He didn't want to eat and he slept more and more. He would throw up green bile and he still had not passed his mucus plug. The nurses shrugged it off, and I felt like they would go back after having been paged and tell the other nurses that it was just the paranoid new mom worrying about nothing. Except that there was something wrong. It made me feel sick inside to think it, because that meant admitting that something bad was happening to my baby. But I didn't have time to deny it. I had to face it for Micah's sake, and deal with it as it came.
We saw family that day and showed him off, not mentioning anything about our worries. It was the proudest I had ever felt. I wanted to say "Look what I did! I made this miracle! My husband and me made this with our love! He's part of us!" And... I did say that in so many words. I was so proud. I was so excited to show off my biggest accomplishment in life. It made me forget my worries for him, if only for a moment.
By the next day I didn't care if they thought I was crazy. I paged them when he would throw up, I would point out that he hadn't eaten all day and didn't seem to want to eat, and I still had no answers. Their only answer was to basically force feed my son formula with a spoon. I was crushed. He had nursed so well and I had felt such a connection to my son when I nursed him that it was an incredible loss. I didn't dwell on it, though. I didn't have the time to dwell on it. They finally started to talk about him not having passed his plug and him not eating. I was told that if I went home it would be without him. Luckily, they were going to let me stay in the hospital on hotel stay for free so I could still be with Micah. They were going to admit him to the special care until where hopefully they would find he was basically gassy and constipated and could go home in the next few days.
This wasn't the case.
The next day we were told that he needed to go to Primary Children's Hospital for a couple of tests, and then he would be transferred right back to LDS. I asked if I could ride along in the ambulance. Even this small thing scared me. I didn't want something to happen on the way and me not be there. So even though it was bumpy and I felt like crying, I was with my baby. We got there and the proceeded with a barium x-ray. They put a kind of fluid up his behind and it helped show his intestines on the x-ray. We were told that it was something that would correct itself and we were sent back to LDS.
We were so thrilled on the way back to the hospital. We expected him to pass stool in a couple of hours and we'd take him home after rounds that evening. Except, it all seemed too good. Always be suspicious of things that seem too good. We weren't even out of the car before we received a call that there had been a mistake. We had to go back to Primary's and Micah would be staying there in their NICU. It was all so surreal. They had found something wrong and they wouldn't tell us what over the phone. When we got back to the hospital and rushed up to the NICU we were handed a form on it. It said he was being admitted with Hirschsprung's Disease. When I asked what that meant I was told it was their best guess at the moment and that it would be explained to me later. In the meantime they had put an Anderson tube down his throat, oxygen on, put him under a bright light (because it turns out he also had some bad Jaundice), and connected him to all sorts wires with a mask over his eyes. On top of all of this he had TPN (a kind of liquid form of nutrition) and he wasn't being allowed to eat.
My poor little boy looked so much sicker than when I had left him. I was angry at myself for having left his side, even for the short amount of time. It was scary, and I felt sick to my stomach. I looked at my baby and cried for a short time before switching back to action mode. Micah needed me to pull it together so I could be his advocate and understand what the doctors were telling me. I was told that they were sending up a surgeon to do a biopsy of his colon to confirm their suspicions. I was sent out of the room while they did it. I've never felt so helpless in my life.
There was no news that night. We had to wait until the next afternoon to hear the news that our son, did indeed, have Hirschsprung's Disease. Micah had no nerves in at least a part of his colon. We were told not to be hopeful that it would be short segment because of the x-rays that they did. They were guessing it was about half. I spent the rest of the day there with Urian and Micah, and we were eventually told we should go home later that night. I wasn't feeling good and even with propping my feet up they were swollen. I wasn't eating and even though I was keeping it together emotionally I could feel it building up.
When we got home and went downstairs I saw his outfits and daytime bassinet. I stopped in my tracks and looked at them. I thought of the way things should be. I thought of the way I should have been wheeled out with my son on my lap. I thought of the way he should be home, nursing and sleeping in my arms. He should be there, I thought. But he wasn't. And that's when it all hit me and I cried. I cried for what should be, and the way things never would be. I mourned the loss of the way I thought life should have gone. I thought of all of my friends and family that have had babies, nothing being wrong with them. I imagined their first night home being full of love and dreams for their baby's future. Then I thought about my empty arms that hung limply at my side, my baby miles away without his mommy. I begged Urian to take me back to the hospital. He held me in his arms and we both cried. He told me that when he was on his way from school to the hospital (he'd gone for one of his classes because I'd told him he'd missed enough school) he'd had to pull over. He'd thought about the chances of this happening, and why they'd had to happen to our son. He thought about how cruel it was that a baby had to be sick and in the hospital. He'd thought of all of these things and more, he told me. Then, he'd come to a conclusion. It didn't matter what the chances of this happening were, because it did happen. It didn't matter why, because it just was. We couldn't change it, and we were completely out of control of what was happening. All that mattered was loving our son.
I just held him, and he held me. And holding each other we made our way to the bedroom where we lay in bed holding the other and thinking about how there was no baby in the crib next to our bed. And knowing that this fact was killing the other as much as it was killing ourselves. We made it through the night by not having empty arms and hearts, but by holding each other and making sure the other knew we loved them and we loved our son.
