This is a long post, so sit tight.
As I mentioned in my About Me section, my son has cystic fibrosis. CF is largely what prompted me to start this blog, even though it is not going to be solely CF focused. I feel like I have so much to say about CF and all the things that come along with it. I have several posts lined up about different things CF related, but for now, let’s go to the beginning of the story.
When I found out I was pregnant with Major, I was so excited and anxious like any soon-to-be mommy. I agonized over delivery plans, prenatal testing, room decor, clothes, maternity leave…the list goes on. I’ll probably touch on some of those things as well as we go along, but that’s for another post.
There was never a question in my mind about doing prenatal screenings, and boy did I have all of them! Everything turned out just fine and showed us our happy, healthy, growing baby in my belly. I always had some sense of normal worry that something would go wrong, but never dwelled on it. Even the minute Major came out, I remember looking at him, studying his face, counting his fingers and toes and just noting to myself that he was absolutely fine.
Right after Drew and I each took a turn holding Major and him getting weighed, etc., I told Drew that he should be the one to give Major his first bottle while the doctor and nurses tended to me. I remember looking over at Drew and falling so much deeper in love with him. He was just staring at Major, crying and smiling. Looking at my husband and son together for the first time was one of the happiest moments of my life. It did take Major a few attempts to suck on the bottle, and I remember the nurse helping him get going. For a split second, I had some fear about why Major didn’t want to eat, but once he took the bottle, I pushed that aside and was just happy again.
The night went on and we had visitors, oh so many visitors in the next 24 hours! Major wasn’t eating very well. He would take about 5-7ml per bottle, and occasionally refused to eat altogether. He had several tube feeds to keep nutrition in him. And bottle after bottle, we kept waiting for him to have the all important first poop. Unfortunately, that never happened. I didn’t get truly worried about Major until our second night and he had been alive for about 30 hours. He was getting a little uncomfortable looking, and his tummy was distended. I told Drew to plan for Major to get sent to NICU in the morning when I got discharged. Even as I said this, I truly had faith that Major would go to the bathroom and immediately start eating better. I knew he was just too uncomfortable to eat.
Well, I was right. After a long night of very little sleep for any of us, the head of the NICU and several nurses came into our room to take my son. Even though I had acknowledged this may happen, I was a mess. It was really happening. Thoughts of my little man having surgery were running through my head. You should have seen the team that came to take him. The doctor kept telling me everything would be OK, but I was so afraid that it wouldn’t be and was completely inconsolable. Drew went with Major while I got discharged and met them over in the NICU. The labor and delivery nurses were so sweet and just held me while I cried. I was scared to leave them and start over with new nurses! I finally made my trek to see where Major’s new room was after about an hour. Seeing my tiny baby hooked up to so many wires and on oxygen was terrible. After a battery of tests over the next 24 hours (and no poop), the NICU director informed us of a possible prognosis: cystic fibrosis. He assured us that Major would poop, and that we had to rule out CF before we could move on. Unfortunately, we couldn’t test for CF for another 4 days because Major was so young.
I have never felt such grief in my life. My father died 5 years ago, and this was far beyond the depth of sadness I thought I knew from that. I can’t even articulate how sad Drew and I were over those 4 days. Drew had his moments. I saw him show more emotion in those 4 days than I’ve seen him show in our 6 years together prior. I could burst into tears just watching TV, looking at him, or having a nurse walk in the room. I looked to anyone to give us some type of answers, any reassurance that it wasn’t CF. I was desperate for some good news, some hope. I snapped at my mom, I was rude to Drew, I laughed at inappropriate times, I rationalized that he couldn’t possibly have it. I felt literally every emotion known to man, I think. We told very few people what we might be facing.
Then, on Major’s 7th day of life, it was time for the test. He got hooked up to what is basically a battery and he was to sweat. I held him so tight against my body so he’d sweat as much as he could on his test site so that we didn’t need to do it again. The NICU physician was so kind to demand a fast turnaround time on the test so we didn’t have to sit in agony for too long. We were blessed to have the results in only about 3-4 hours. (Normally if someone is outpatient it would take them about a week. Inpatient, we were told 1 day.)
The minute Major’s doctor put his hand on our door, I just knew the test was positive. I truly felt God warn me in that moment and had a moment of clarity about things in my life that had prepped us for the diagnosis. I asked Drew to hold Major because I was shaking so badly. I never looked the doctor in the eye. He walked past both of us and sat down in a recliner in the room. It was very clear from his demeanor the test was positive. He gave us the numbers, which really didn’t matter. But we knew it was CF. We both cried. I think the doctor had a hard time not crying. He was so, so caring. After about 3 minutes of discussion, Drew and I asked what to do next. The CF team would be coming to our room over the following 2 days. Surely they had been prepping for this diagnosis while we sat in NICU. Now it was time for them to meet the baby they’d been briefed on.
It is another post entirely to talk about meeting the CF team and those first few days as CF parents. What I want to end on is that our time in the NICU changed us. After speaking with other parents of not only CF kids, but just parents who have been to the NICU, I now understand that it truly changes you. Being in the NICU is a club that no one wants to be in, but there is a mutual understanding between NICU parents that just can’t be explained. The nurses in the NICU are angels. They listened to me, hugged me, snuggled my son, sent us on dates, taught us how to bathe him, give his meds, and just kept us going. We met some nurses there who I truly believe will be lifelong friends (hi!).
More than anything, in NICU, we learned a new kind of toughness that comes from having a child with a progressive disease. CF or any terminal illness is not something I would wish for anybody. But I would wish for anyone to have a son as incredible as the one I have. I have never felt love like this! The love I have for Major is far greater than any grief we experienced in his first week of life. I wouldn’t take any of it back. CF is part of Major and we love Major. He is the toughest baby I have ever met. I mean, his name is Major!
I truly believe that I was put on this earth to be Major’s mom and to lead him through the CF journey. I do believe there are many other reasons why I am on this earth, but for me this is a big one. I know there is a reason for every single thing that happens in my life. And thus, the blog was born.