I apologize in advance, this may be a bit all over the place.
The first week has been rough, I never imagined this would be as hard as it has been. In fact, before last week, I guess I really never imagined the NICU being part of my story ever. Your entire perspective on everything changes instantly. Leaving the hospital without your baby is something no parent should have to do. I think perhaps I was even more poorly prepared, because while I knew that at 35 weeks she would likely have to stay, I saw it as more of a speed bump than a long term stay. After a week, I don't really know what to believe.
Annika is stable for now. She's still on the ventilator, which she's been on since Thursday morning. They've been able to adjust her settings lower over the past few days, but I haven't really heard talk of trying to take her off it for the past couple of days. I think it's mostly due to the fact that while she's holding pretty steady, she's not really making the forward progress the neonatologists would expect for someone of her gestational age and size. Though she doesn't seem to be in pain, she's fairly lethargic most of the time, and they feel like she's "sick." What they haven't figured out is if it's just the trouble breathing that's tiring her, or if she has some sort of bug that they haven't identified.
Yesterday we were there when they rounded, and the one neonatologist in particular seemed fairly puzzled and concerned. She was not re-assuring to a mother's heart. Their biggest concern is that they would expect a baby of her age to have started producing her own surfactant within the first 1-3 days following birth, and there's no indication that she's done so. Her chest x-ray is still very cloudy, she's still taking too many breaths per minute, which is making her oxygen usage ineffective on her own, and is working to hard to breathe. As a result they've started to investigate if there are other structural issues putting more stress on her lungs. Annika had an EKG yesterday, which didn't really turn up anything explanatory or terribly concerning. She has a few small, very common holes in her heart, but according to the cardiologist almost any baby would have visible holes at this age, just most aren't given an EKG because they close on their own in the first few months following birth anyway.
Today she has tests for liver functionality due to some bilirubin numbers that are atypical, and she'll also have another blood draw to see if she's still has elevated levels of antibodies that are usually indicative of infection. I never thought I'd be hopeful that my child had an infection, and it still concerns me, but if she has a bug that she's not getting antibiotics for, it might be a quick and "easy" solution.
The unknown is what's so difficult for me right now. If someone could tell me that she'll be fine and give me a timeline for when she's coming home, I feel like I could deal with it, somewhat regardless of when it might be. I've already mentally extended my "2 weeks at most" perspective I had before and during her birth. I'm trying to prepare myself for a long road.
Unfortunately, I'm also concerned about the doctor's concern. I don't know about all moms, but I can imagine all sorts of terrible outcomes. I know the statistics on 35 week preemies says they almost all do just fine, but yet all of us know that there are always exceptions to statistics and there's not a worse fear as a parent than the thought of losing your child.
We're trying to take things one day at a time, stay present for our kids at home, and make time for each other, but many times it seems that there's just too much uncertainty to find any "normal" in this stage.
We still cannot thank everyone enough for continued concern and support: calls, meals, offers to help with kids, and asking about how Annika is doing. Thanks for loving our daughter with us, even though most of you haven't yet met her. Thanks for loving us well too! Hopefully the next update can be more encouraging.