I have a reputation in the NICU. I'm the girl from whom the milk flows. Everyone is always commenting on what a good "stash" of milk I have. I know how important it is - better than most medicine, and I'm super dedicated to pumping it for all my preemie babies.
I'm also the Calm Mom. Doctors and nurses alike comment on how well Dave and I keep it together. We remind everyone that our previous experience in the NICU has given us an education about what to expect. Alarms and beeps don't scare us like they did when the twins were there. When Adeline & Charlotte were in the NICU, I was super woman for like five weeks. Then one day I broke down. Everything had gone wrong - Charlie lost weight, Addie had to be stim'ed. I thought they were ready to come home and they needed at least another week (it ended up being two more weeks). I lost it. I cried. A lot. The spectacular care of the doctors and nurses in the NICU shifted from the twins to the Mommy. Everyone worried about me. They knew I would crack. I didn't.
This time is different. This is really hard. Like really really hard. Lincoln is SO tiny. I told my Mom that this time I'm not nearly so worried about how his early arrival will affect his development, I'm worried that it affects whether he comes someday or not. 23 weeks is not nearly the same as 31 weeks. Link was born at 23 weeks, 6 days. When I told a nurse today that he was practically 24 weeks, she said, "He's considered 23 weeks because that early, EVERY. DAY. MATTERS." He is a 23-weeker.
I was feeling excited today. We were getting his echo results. His umbilical line was being removed and replaced with a picc line. (At one point it was mentioned that once that happens, he could be held. It feels like a dream.) He was taken off the jet ventilator and put on the conventional ventilator. They mentioned him starting feeds today. (Another dream - all this milk that I know can make a huge difference for him - he's about to get some!) He even gained a little weight today.
But the echo results came back. The medication didn't work. We will try another round, and then it will be surgery if it doesn't work again. Also, because it didn't work, he cannot eat. He can't get this amazing milk yet that everyone says will work wonders. His heart can't pump enough blood to his gut to let him digest the food.
I keep saying I'm being "cautiously optimistic." And I am. But tonight I feel broken.
Tomorrow is a new day. And I'll reset my mood and try to be Calm Mom again.
***UPDATE***
David and I just arrived at the hospital. Lincoln has been taken off the conventional ventilator and put back on the jet ventilator. Another step back. Damn.
***UPDATE AGAIN***
We just finished evening rounds. The PIE is there after all. Perhaps the first x-ray wasn't clear, perhaps moving him to conventional ventilator caused it to reappear. In any case, it's back and he's back on the jet.
He will start a new round of indocin tomorrow. I asked if there was a better chance this time that would work or about the same or worse. No one answered right away and I said, "It's okay. You can tell us it's worse." It is. If it didn't work the first time, chances are less that it will work the second time. But as long as he can tolerate it, it's worth a try before a ligation (surgery).
Because we're full of questions, I probed on. If he needs the surgery, what kind of time frame are we talking about? Days? Weeks? Months? Maybe a week, two tops. The PDA has to be repaired. But Lincoln has to be bigger and more stable. He can't eat because of the PDA, but he can't get bigger without eating.
Then they dropped a bomb. The surgery will be at another hospital. Cohen's on Long Island, perhaps, or Mt. Sinai in the city. Maybe Columbia. That means that our teeny-tiny boy will be put on an ambulance and taken to another hospital. It's okay, it's quick, they said. He'd only have to be there for about 3 days. ONLY? How are we supposed to do this? My heart is broken. I don't know how to handle this.
I had planned to go back to work next week. The unexpected time off will be a big financial strain that we don't know if we can handle. But how can I go back when my child is fighting for life?
No comments:
Post a Comment