The infamous Riley had another good night. I honestly feel that I noticed her smiling more than ever today…almost as if it was her way of telling me she is aware of what’s going on…she knows she’s already making her presence on this earth known, at the mere age of 34 weeks and 4 days, when she’s still supposed to be hanging out inside of me for another 5+ weeks. You sure are something else, Riley Mae.
Per the nurse, Riley only had 3 desats overnight (which was pretty much her norm when she was on the CPAP), and the lowest drop was into the 30s, and no b’s. The nurse has been able to wean her oxygen level from 35-40% yesterday to 25-28% today. Riley Mae is holding her own on this new oxygen contraption!! Good work girlfriend 🙂
During morning rounds, the docs mentioned that Riley had another eye exam this morning (this is to continue to monitor for the retinopathy of prematurity, aka ROP). Everything continues to look good and her retinal hemorrhage (found on the last exam) has nearly resolved! YAY! She will have a repeat eye exam again in 2 weeks. The medical team was enthusiastic about Riley tolerating the nasal cannula, and feel that Riley is ready to begin bottle feeding today. Woohoooo!! Taking another step in the “real mom” direction and getting to do more “real baby” things! I admit I’m definitely nervous about starting the oral feeds. This is another rather big undertaking with these premies, and can be quite a process, adding to the ongoing roller coaster of ups and downs. Yesterday, the nurse had me give Riley a pacifier that I had dipped in my breast milk, just to see how she would do and introduce her to the whole process, and she immediately started coughing and desatted. “Okey doke, enough of that,” I told Riley, as she looked at me like “What’s the problem, ma.” However, it looks like today, we’re going to give the real deal a try, and see what happens…
Riley continued to have her desats throughout the day today, sometimes causing her to change color (“dusky” is what the nurses call it, as her face turns this grayish-pale color and her lips sometimes turn blue), requiring stimulation and minor bumps in her oxygen levels. I may appear calm on the outside, as I’ve gotten quite good at pretending and at least “looking composed,” but I actually continue to be slightly terrified on the inside when I watch these episodes, and don’t experience a sense of relief until I see the color slowly come back into her face, with her cheeks returning to that baseline rosy color. I admit there is still that small part of me that sometimes fears the worst…the fear of the what ifs…what if that turquoise number on the monitor drops to zero and doesn’t come back up…what if her lungs one day decide they’ve put up a long enough fight and they’re too tired to continue….
Ok Brooke…enough of the depressing what ifs. What ifs don’t get you anywhere. I need to focus on the here and now…what’s happening with Riley right now, at this moment (going back to my “taking it day by day” philosophy), because the rest is unknown. And right now, Riley is rocking it!
So after admitting to one another that we were both a little nervous, as neither of us wanted to be responsible for a Riley setback, the nurse and I decided to try giving Riley a bottle. The nurse took charge, which I was very thankful for, as I felt nervous enough just watching this whole process. She started by wetting Riley’s lips with a little milk, seeing what she would do with it. Well, she didn’t do a whole lot….Ok, next step…the nurse gives it a go, placing the nipple into Riley’s mouth, seeing what she would do with that. Well she started to sort of suck, and then stopped, and then there it was…the color drains from her face, her chest is no longer rising and falling, and the nurse is rubbing her back calmly, reminding Riley to “breathe,” as she desats and her monitor alarms. Ok, well this is why we were nervous. However, we didn’t give up…it’s Riley we’re talking about here…she will get this. We gave it another go, and what do you know…the girl went at it…sucking, breathing, and swallowing…performing and coordinating all 3 of these rather difficult skills on her own!! The nurse looked at me with surprise in her face and her mouth open wide, and then said with a smile on her face “She’s doing it.” I started to feel a little emotional because I was so damn happy and shocked…and just replied “I know she is…,” and praised my little miracle. She downed 5 cc’s of milk like it was going out of style, to the point where I actually said “Ok, Riley, slow down,” as I was afraid her brain didn’t have time to catch up and she’d forget to breathe again. We called it quits after 5 cc’s, not wanting to push Riley over the edge, while still being able to acknowledge and appreciate how well she did on her first try. A few minutes later the nurse commented “God, she has great hair. She takes a bottle AND has great hair!” “What more could you want in life?” I replied. You so continue to amaze me Riley Mae….
Ian and I ended the night by attending the Savor charity event, supporting research on premature births and raising money for more nicview cameras. An excuse to dress up and enjoy a night of delicious food and a cocktail (or two)…our first night “out on the town” since Riley was born. What a great day:)
At the event, we were introduced to another NICU family, who gave birth to their child at 26 weeks, and they shared with us that he was supposed to be a twin, but his sibling didn’t make it through his 2nd day of life. They also lost their first baby at 22 weeks. Hearing their story made Ian and I realize how lucky we are…despite everything we’ve been through, it could always be worse…and we feel so lucky…
While we were at the event, we logged into to the nicview camera website from our iPhones several times to make sure our little one was behaving herself;) We also called in to the NICU on our way home tonight, and the nurse reported Riley hasn’t had any d’s or b’s since her shift started at 7pm, and she gained 123 grams!!! That’s unheard of!! She’s now over 5 lbs!!! WOAH Riley Mae!