We’ve been at Arkansas Children’s in Little Rock now since Tuesday afternoon. We have been blown away by the doctors and teams we’ve met with, and so thankful for how they all work together in planning care for Shiloh. We’re so thankful for the exception they made for me and Zachery to be here with Shiloh, and for us to both be able to talk to doctors together, rather than having to relay information back to each other. We’re also so thankful that after just the first couple nights they moved Shiloh out of a pod (with lots of other babies, wonderful care, but we couldn’t stay overnight with her) to a private room where we do get to be with our baby girl 24/7. Both these things feel so orchestrated by Jesus, as they weren’t even things we were asking for; our Father gives good gifts to his children (Matthew 7:11).
Shiloh is responding really well to the medication to control her DI. Her sodium levels have moved into the range they should be in. Today they are taking the extra water out of her feeds to see how she manages only taking breastmilk. We’re praying that her levels stay stable and that this dosage of medication will work for her (if we have to adjust at all, it means another 3 days here watching levels, and we’re not thrilled with that idea)!
The second reason that we came down to Children’s was possibly for a g tube surgery, but we’ve learned that Shiloh is still about a pound too small for that yet, and again, we aren’t looking to wait around here until she gains that! In the meantime we are planning to go home with her ng tube, Zachery placed his first one for Shiloh yesterday, and it seems much less scary now than the thought initially did. We’ll try to offer bottles from time to time (per recommendation of the speech therapy team here), but it’s clear that there’s no way Shiloh can get all she needs from a bottle feed (it’s difficult to get her to even take 4-5ml of a bottle and she’s taking 55ml by tube feed every 3 hours!).
Our favorite person has been the palliative care doctor, Dr. Brown; when we talk to her it feels like she truly sees the value and meaning of Shiloh’s life but is also able to balance that with her quality of life and navigating not doing more to Shiloh than is necessary, plus she’s the one on our team for getting us home in a shorter time frame!
Specific prayers for today:
- That Shiloh’s sodium levels will stay where they should be
- That everything else for discharge will go smoothly (training us with tube feeds, car seat test, ect.)
- That pumping will continue to go well and I’ll have enough supply for Shiloh as she grows (she needs a low sodium diet, so that’s either breastmilk or a special formula)
- That we will be able to discharge on Monday like we hope! And that we will feel confident in our care for Shiloh in taking her home. (We are SO ready to be home with our baby with with Hadley and Paxton!)
- That she will remain seizure free
- That Shiloh will keep doing amazing and defying odds