My five week old, perfect and beautiful baby boy has passed away.
I don't know most of you, and just joined over here, but I wanted to start this thread for a couple of reasons. First, I want to share his story, and second, there aren’t a lot of places to talk about losing a baby that I have found, so if something similar happens to someone else, I want them to feel like there is a place to reach out for support.
For those of you who don’t recognize me, here is a little backstory. I TTCed for exactly one year to get pregnant. In that time I had to have a laproscopy where they discovered stage IV endometriosis. I charted and did OPKs, and through that knew that I also had a short luteal phase, so I went on Clomid. That worked wonderfully, and I got a BFP. I had an awesome pregnancy, no sickness, was pretty comfortable until the end, etc. I loved being pregnant. At 35w3d my water broke. I had an amazing birth, that’s another story for another day, but it was mostly painless and happened pretty quickly. At 12:34 on 1/11, exactly one month early, I got to hold my perfect baby boy, Q. Other than being early, Q was perfectly healthy, and we got to go home at the normally scheduled time after a couple of days. We were home for a week when Q started showing signs of sickness, so we rushed him in to the emergency room.
Being first time parents, DH and I hoped that we were overreacting, although I felt that we weren’t. Q had lost interest in eating completely, although he had never been a good eater anyway. He also started breathing fast and a little differently, which concerned us. After admitting us to the NICU level 3, we were worried, but knew we were in the right place for Q to get better. They ran all sorts of tests, including a spinal tap and a bunch of blood work, and we found out that Q had the adenovirus. Because of that, Q was kept in a room instead of out on the NICU floor in a bed. That actually worked well for us, because we were able to stay with him in his room at all times. We squeezed two reclining chairs in the room, and even slept with him.
For the first few days he was weak, but we thought he was just going to slowly get better and be home in a few days. His illness suddenly escalated, however, with a high fever. He then developed pneumonia, and we were moved to level 4 NICU. Fortunately we were at one of the two children’s hospitals in the country with a level 4 NICU, Texas Children’s Hospital.
As Q got worse, he went through different equipment to help him breathe, but ended up on a ventilator. He had many ups and downs, but we thought he was getting better after being on the ventilator for a few days, when he took another downturn. Q ended up needing to be put on an ECMO machine, which is essentially a heart/lung bypass machine. We were so scared, and it was so painful to see our baby so helpless, and not be able to pick him up. Once he was put on ECMO we were no longer able to sleep in his room with him, but we set our chairs up outside, and when it was time to sleep, we would go down the hall to the Ronald McDonald House.
After 16 days on ECMO, again we thought Q was getting better, but things quickly took a turn for the worse. It was discovered that Q had a brain bleed and his heart walls had thickened to the point of disrepair, probably due to one of the many medications that he was on. The doctors told us that they were sorry, but he wouldn’t make it, and prepared him to be taken off of the ECMO machine.
After 16 days on ECMO, and 27 days fighting for life in the NICU, my baby boy was placed in my arms where he passed away as we told him how much we loved him over and over again. He was so strong, and we were so incredibly happy to have him in our lives for 38 days.
Q’s illness took us by surprise. We weren’t sick, no one we let see him was sick, and we made everyone wash their hands before touching him. Apparently his was just a “lightning strike” situation of bad luck.
It’s now been 5 weeks, and I hurt everyday. I cry for him, so upset that he will never get the chance to do any of the things we dreamed about, and I miss him constantly. Most of the time I drift between extreme sadness and an empty disbelief that this is my life. We have started counseling and went to a support group last week. If anyone else has lost a baby, I would love to talk to you to support each other.