It's been a long couple of days trying to recover from our setbacks earlier in the week, but we're making progress.
Fun stuff first:
Abby's grandparents and uncle came to visit last weekend and got to spend some quality time cuddling with the munchkin. It was great to see family and I know they were happy to come make sure Jameson and I were doing ok as well.
As Abby is becoming more alert during the day, we're getting to see her enjoying the world around her. She loves being held, swaddled, sucking on her pacifier, watching the mobile attached to her crib, and taking rides through the hallway in the stroller (she's "wireless" for a couple hours a day, so we're trying to get her out of the room). She hates diaper changes and being unwrapped in general, but is a really good baby overall. She makes some hilarious faces and is pretty darn adorable.
After an additional echocardiogram on Friday to assess Abby's PDA, the cardiologist determined that it appears to be closing on its own, so they don't think they will need to perform that surgery. However, this causes them to now believe that the reason she's struggling is because of a worsening ASD (hole between the upper chambers of her heart), which will require open heart surgery. Deciding when to do this surgery is a little complicated. They believe that closing the ASD could take a lot of the strain off her heart and body, allowing everything to work more effectively, but they generally don't do this surgery until kids are a little older/bigger because of the risks involved. Thusly, they really want to see Abby gaining weight before undergoing an operation of this scale.
Unfortunately, because Abby's heart is working so hard, it doesn't leave a lot of energy left over for digestion. This has made eating and gaining weight a laborious process. We've had to pretty much stop working on bottle/breast feeding because Abby's been put on a continuous feed through her NG tube (she still receives breast milk, but it goes straight into her stomach). After throwing up so much, the dieticians felt that this was the best way to get her the calories she needs to thrive - and she does seem to be tolerating it better than the intermittent feeds throughout the day, so hopefully we'll get her where she needs to be soon.
Our Abby seems to baffle nearly every doctor we've seen. I can't tell you how many times we've heard, "well, she just doesn't fit what we'd expect of someone with ______." This is especially true with the genetics team. We really enjoy talking to them, but have been made quite aware that Abby's anomolies just don't add up to a simple answer. Basically, she may have a craniosynostosis syndrome with isolated heart problems, a heart syndrome with isolated craniosynostosis, a whole bunch of isolated findings, or something completely new. This matters because it will help inform the doctors of the care she'll need as she grows and develops. Whatever it is, she's unique!
We're hanging in there. We've pretty well moved into Abby's room, and it feels a lot like hotel living (with people coming in periodically to check Abby's vitals, run tests, etc...): we have a pull out couch/bed, a couple of drawers to store stuff, and a bathroom with a shower. We have no idea how long we'll be here, but we're making it work. Some days (like Monday/Tuesday) have been truly dreadful, but others have been manageable. We still struggle with understanding why so much has been piled on someone so little, but we may never really know. We are enjoying hanging out with our little girl and are just trying to take each day as it comes. We venture out to the cafeteria patio during the day to get some fresh air, but leaving the hospital is still very hard. I have my two week post-partum appointment tomorrow, which will mark the first time I'll have been home since checking into the hospital during early labor. I am excited to see Gracie and Boone (who are home from the kennel now, thanks to friends offering to watch them), but I am not looking forward to being away from Abby for most of the day. Luckily we have even more great friends who've offered to sit with her while we're gone, and we've bonded with some of the nursing staff already (they all love Abby).
Thank you to everyone for the thoughts, prayers, cards, food, and visits. We appreciate everything so much (forgive me if I haven't responded to your texts/messages - we appreciate you too, I just sort of lose track of stuff). Things would be a lot harder without all of your love and support. Thank you, thank you!
The feisty little thing pulled out her feeding tube a few days ago and looks pretty smug about it, I expect we'll have our hands full with her. :)