So it’s been a while since I’ve given you the deets on my sweet Tiny. It would be impossible to sum up the last couple months, but I will say that it’s been a complete roller-coaster. Good weeks/days, bad weeds/days, hopeful moments, really dark moments… my emotions have fluxuated just as much as her health. There’s been so many unknowns about what she’s dealing with, and how to help her, that it has made me feel beat with stress and frustration at times.
So although she was cleared to start trying to take some milk orally about six weeks ago, she’s not made any progress in that arena. She’s shown a complete lack of interest (and really and aversion it seems) to the bottle. SO…that’s been hard to not see any improvement and feel like our situation will never change. As long as she is tethered to 24 hr continuous feeds, we are pretty home bound. I can leave, but I rarely do because it is super stressful and absolutely exhausting to drag around alllll her gear (pump, IV pole, milk, ETC). We can’t feed her normal amounts in a normal amount of time until her tube gets pulled to the stomach (it’s in the intestine now), and that can’t happen until they do this big reflux test where she has to be hospitalized for 24 hours. She IS growing, albiet really slowly, but I wouldn’t say she’s exactly thriving. But that’s actually another story. The reason why I’m updating you is to tell you about her surgery!
Although she’s shown no interest in the bottle, she HAS shown a little in nursing. A couple weeks ago I discovered that she’s interested, and doesn’t immediately start crying when I put her to the breast. She can’t get anything, but she’s interested. So I told my ENT this, and explained my secret desire that she get her cleft repaired early, so that we could bypass the bottle, and try and teach her to nurse when she’s ready to start oral feeds again. To my complete surprise, he agreed with me. He thought it was a great idea. So he talked to our plastic surgeon (bless his soul!), and in a few days it all happened—her surgery that had originally been scheduled for Jan 4, got bumped to this Friday!
So I’m really excited. And nervous. She did great with her last surgery, but this is a much more major one, and I think any surgery with a newborn is stressful. But I feel really good about it, and I have the tiniest glimmer of a hope that MAYBE she’ll eventually be able to nurse. It would mean the world to me.
So this is a really big weekend for our family. It will likely throw a wrench in our family routine for a while (you know you get into a groove with things), but I’m really hopeful that this will be the beginning of some really important progress for her.