🤍 Riverlyn 🤍 - Update 5 -

Hiya, 

It's been almost a week since we sent an update and what a week it's been. In some ways it feels like we took a hundred steps back... in other ways we feel tremendously encouraged by some of the things we are seeing. When I spoke to a social worker mid-last week and she shared that some programs kick in after a 30-day hospital stay, I couldn't have imagined we'd still be here and seeing that milestone approach rapidly. Alas, with some of the challenges we've faced this week, there's still no clear timeframe. 

The challenges have been a mix of unexplained lethargy (as I mentioned last time), GI, feeding tube, access, weight, feeding, and timing challenges. 

✓ On the GI front, they fortified Rivy's milk with formula and it did not agree with her. That set us back two days or so as she was throwing up quite a bit. She's now on a hypoallergenic formula fortification and it seems to be going much better. She's also on reflux meds. 

✓ The feeding tube (NG) is irritating to her so it causes hiccups and gagging frequently which can trigger extra reflux and symptoms. 

✓ Access has been particularly tricky - today she was stuck six times over two different visits (2x in the head) with no viable access or blood drawn. Part of the challenge is the blood pressure in her veins from her heart differences. I don't know what their game plan is going to be on this point but we are definitely tired out and cried out on this front. 

✓ Rivy has finally started to tick up on the weight front in very small increments. We are still six ounces below birth weight. 

✓ I was able to successfully respond to Rivy's hunger cues a couple of times this weekend and that let to some minimal re-introduction to nursing. She's still not drinking via nursing or bottle though. 

✓ Timing for progress on feeding and all the other elements is tricky - especially trying to catch her when she's awake and hungry at the same time and can work with her speech therapist or the lactation team. 

And...in all this, while our family is split between hospital and home, grieved in the suffering, and exhausted every day...we are also hopeful and absolutely believe in all God is doing and revealing in these circumstances. We are in awe of this girl's patience and courage - even the night nurse last night commented that she seems wise beyond her years (or days/weeks rather). It's an incredible blessing to be with and get to know her!