Came in this morning and I noticed a gift for Riley from her BFF nurse. At least this is who I’m assuming it’s from, since she was just on vacation at the Outer Banks. Riley, you’re sure going to have lots of making up to do in this friendship once you get a little bigger, as it’s pretty one-sided right now…
Riley did pretty well again overnight, having some desats, but only requiring stimulation during one of them. She also took a whole bottle for the nurse at the 2:00am feeding time, although she required a little coaxing. No new changes during morning rounds, except to increase the frequency of bottle feeding as Riley tolerates.
I have to admit I’m still definitely feeling some anxiety associated with this whole RSV thing today, probably because I haven’t stopped thinking about what it means for us when we bring Riley home (which will be here before we know it). However, kids most often contract the virus during their first two years of life, so even if we make it through this initial season, we’re not out of the woods yet. Riley falls into the high risk group, meaning she’s at a high risk of getting severe RSV, due to her being born prematurely and also because she has chronic lung disease. This also means she will get to receive a medication that helps prevent RSV (although of course there are no guarantees) called Synagis, which she will receive before the RSV season begins in October, and will continue to get every 28-30 days throughout the season. My brother had asked me about this awhile ago, as he works for Merck and is up to date on the latest vaccine and medication info regarding RSV, and now I’ve learned a little more about it. Ironically, my brother is currently helping to develop a vaccine for RSV. Riley has kindly demanded for him to “speed it up, Uncle Ryan, so mom doesn’t have to keep me in a bubble.”
Speaking of keeping Riley in a bubble (knowing this is not physically possible but if it was she’s be screwed) it brings up a whole other set of concerns and emotions for me. Riley will be coming home during prime time flu season and RSV season. We’ve already been told to limit visitors and avoid “passing around the baby,” meaning that all of the wonderful, amazing people who have supported us through this crazy time will likely not get to meet or visit with Riley during the first 6 months of her life. This just doesn’t seem fair. I know people might say that “it’s temporary” and “only for a short time,” which is true…however, Riley is only going to be 2 months or 4 months, etc. once….we can’t get those times back. And I can honestly say that I wouldn’t be surprised if friends and relatives begin to distance themselves from us because of it. I don’t blame them. It breaks my heart just thinking about it.
I had previously pictured our holidays this year to be like our usual get-togethers with the addition of our Riley Mae, likely being the center of attention and the receiver of most of the presents at Christmas time (I was a bit concerned how Ian was going to cope with this change). However, we’re likely not going to be traveling with Riley, and again, visitors are limited, so we can forget about our holiday traditions.
We’ve also been told to avoid public places, such as grocery stores, malls, child care centers, etc. This may sound totally selfish, but I have concerns about maintaining my sanity if I’m stuck at home, inside, often being alone with my child for the 3 months that I plan to spend at home with her until I go back to work. I’m the type of person who needs human contact and social interactions. And speaking of going back to work, we now need to figure out a new plan for child care, since daycare simply is not an option. Don’t get me wrong, I love Riley more than anything in the world, and Ian and I will do whatever we need to do to protect our child from getting sick, but this just sucks. Again, nothing about this process has felt or been “normal,” and I guess these deviations from the norm will be ongoing for some time.
Anyway….who needs Dr. Phil when you can write a blog, right? So Riley’s morning feeding (via bottle) went okay. Not her best performance, but she looked super cute, so that automatically wins her brownie points in my book:) She never really got into a rhythm, had a few “almost” desats which I was able to prevent by pulling the bottle out of her mouth and rubbing her back, but by the end she just wasn’t feeling it anymore. She still consumed more than half her feeding (27 cc’s total), and it took her about 20-25 minutes. The nurse was pleased that she didn’t have any true desats, and didn’t seem too concerned that she wasn’t able to consume her whole feeding.
Riley’s second feeding went better. It took her awhile, and at times she didn’t seem she was too sure she was feeling it, but about half way through it was like the light went on upstairs and she downed the rest of it with a look on her face of “Where’s this been my whole life?” Got in a few good burps and hung out with mom for a bit. Getting the hang of it…slowly but surely….
Overall, Riley again continues to do very well. She packed on 60 more grams, putting her at 5 lbs 7.1 ounces. She only had a single alarm (desat) all day today, and it didn’t happen during her feeding:) Keep up the good work, princess.