Realizing

I am going to tell you about when I realized how sick he really was. It didn't happen for a long time. It came in bits and pieces after the first few weeks of the NICU stay. That is when I began to piece together how close we came to losing our sweet baby boy.

As I have mentioned in other posts, the reason we ended up at the hospital was because I felt like he wasn't his normal rambunctious self, doing triple flips in my uterus and high kicks to my rib cage. So I ended up in Seattle, having a baby. Let me tell you, first, about Dr. Josh. He was one of a few important people who became Eli's saving grace. He made the executive decision to get Eli out when we did. He was smart and made the right choice. We visited a lot with Dr. Josh for the 4 days I was in the hospital recovering. He was the big man on campus. Finishing up with his residency with-in the next 6 weeks. He had "minions" who would check on his patients so he rarely saw mothers after the first day of their baby's birth. I mean, the dude delivered something like 1000 babies in a year, so he was busy. Luckily, we had a stockpile of licorice so we visited a lot with Dr. Josh for the 4 days I was in the hospital recovering. After I was discharged, he went about his business and we didn't see him for 6 more weeks. By this time, Eli was on the up and up. We were working on him feeding from a bottle so we could take him home. We remembered about Dr. Josh graduating soon so we stalked him and brought him a bin of licorice. He came to visit with Eli and I, he told me more about the day Eli was born. He told me that as soon as he walked into my hospital room, he knew instantly,without even hearing the whole story, that the baby had to be taken out via c-section and soon. He told me that after they got me set up in the operating room, he knew the baby wouldn't make it if they didn't act fast. They ended up performing what I think they called a "zero minute c-section". Dr. Josh told me that he knew Eli was special, looked me in the eyes and told me that Eli was dying when they pulled him out of me. How surprised he was to see Eli tubeless, no oxygen, weening from a feeding tube and no infections or long term issues. Hearing this from him, I wasn't shocked. It was what my gut instinct had told me and I knew it was the truth. I feel like we owe so much to that doctor. He listened to a prompting, he was comfort to me when I was alone in a hospital then room and the operating room. He had the light of Christ and I am sure is one of the best doctors ever to graduate from that school. During our conversation that evening in the NICU, I told him to thank his wife. She gave up so much of her time with her husband and her children's father. I hope she realizes that because of her sacrifice, she and her husband have given numerous women a chance to have their own children, alive and healthy.

Eli at 6 weeks with Dr. Josh

Confusion would not describe what you, as a parent of a preemie, feel. Especially in the first few weeks of your baby's life. I truly believe that you just put your head down and trudge through the mud. Not even knowing what you pass along the way. Let me tell you about another of the best doctors to ever work at that hospital: Dr. Maneesh. He was Eli's first neo-natologist and got him through the fight. The first time we went to rounds (where they discussed the health and care plan for our baby) Maneesh was amazing. It all seems like such a blur. 10 people sitting around a big desk, throwing around medical terms you don't understand. Talking to each other about the seriousness of certain things your child is facing at the time. Eli's list was long. His heart was enlarged, his bowels weren't working, his kidneys weren't working, his liver wasn't working. You know, only a few of his organs were actually functioning well. As all the medical staff was discussing his care, Maneesh stopped in the middle and looked Dustin and I in the eyes. He knew we were overwhelmed. He told us in plain terms what was happening. Eli's heart was enlarged but the function was well, he couldn't urinate because his kidneys had started to shut down before he was delivered, same with his bowels, his bilirubin was high and getting higher because his liver had also started to shut down before he was born. When you die, your body tries to preserve the "most important" parts. Usually the brain and the heart. Maneesh explained that Eli's heart was working overtime and most likely that was why it was enlarged, but they needed to keep and eye on it. He also explained that Eli was turning a dark dusky grey color and puffing up, starting with his stomach and then it began spreading up higher to his neck and down through his groin.   This is what they were most concerned about because there was nothing showing up on his blood tests. He had no infection, the most they could tell was that his bilirubin was high, but he was grey, not yellow. Let me tell you right now why we think Maneesh is so amazing. From that first day in rounds, and the next few, he told us that he believed Eli took a hard hit while he was still in utero. His body had began to shut down, now it needed to wake back up. He had the best people skills. It was like he knew what we were thinking and explained everything for us to understand it. He was not only Eli's saving grace, but ours as well. He was just so nice and we felt confident in the care he provided for our baby. He knew his stuff and knew what to do. In this case, it was hard because it was mostly a matter of waiting, Eli was pretty much in charge of "turning a corner" on his own. Maneesh was there to make sure Eli turned the right way and we were sure of that.  When he was about 2 weeks old, Eli had turned a corner. What we had all been waiting for. He was able to get breast milk though his feeding tube instead of just fluids, vitamins and such. He was breathing on his own. He was just beginning to grow. He was getting better. Maneesh came to visit me while I was sitting next to Eli. He told me how happy he was to be able to see Eli on his way to health. He told me that he honestly wasn't sure if this day would come. It made him happy. He knew he made the right choices with his team. After talking with me for a little bit, we discussed Eli being grey. He was the "grey baby". Now that his color was beginning to pink up, we talked about what caused it. It's not everyday that your child's doctor blatantly tells you that your baby was dying. They used gentler terms for us in Eli's first days of life, but hearing Maneesh say those specific words: Eli was dying when he was born, made me realize, again, how serious it was especially in the beginning.

This leads me to the nurses who helped Eli through his journey. They saw the entire thing. Specifcally the nurse he had on the day he was born, and also the few he had the days following that. When it came time to break Eli out of the NICU, they all seemed a little shocked. This baby was going home a week before his due date. Happens all the time. What doesn't happen all the time is a baby who was deathly ill at the beginning was going home with no tubes, no wires. He was small and mighty and nursed half of his feeds and took the others fully from a bottle. He had strong lungs. I had a little heart to heart with Heidi (the nurse who was with him when he was born) she "happened" :) to also be assigned to him on his last day in the hospital. I asked her to tell me how bad it was. At the beginning, how sick was he, what did I not see or know in the first days of my son's life. She was holding him, getting in her last snuggles. I will never forget the way she looked at me and calmly said "it was bad." I knew what she meant with those three words.

Eli with Heidi at 8 weeks

Eli beat the odds. He is meant to be with us. We ended his first year with a long walk at the March of Dimes, March for Babies. It was an emotional day for me because it was also his first birthday. This walk re-emphasized that some babies don't beat the odds. Though, for some reason, ours did. We realize everyday how much we need him in our family. I can't close this entry with out emphasizing how much these people mean to us. The doctors, the nurse-practioners, the nurses. They all stood by us and watched a miracle take place. I consider these people a part of my family because if it weren't for them, my family would not be whole.

Eli enjoying life. He'll be 2 in a few months.