I am happily exhausted from a fabulous day with Phoebe at HOME! It was a close call when I had to take her in to the ER at 4:30 am for a fever, but we made it out around 11:30 after her blood levels came back good, sodium was good, fever went down and she got an antibiotic just to be safe. We left the ER and passed a window overlooking a flower garden and she gasped “flowers!” like it was the first time she had ever seen one. She is seeing the world anew and it is beautiful.
The joy of having all of our children under the same roof is immense. It warms me every time I walk into a room and see all four of those little people together. The boys huddled around her all day, just soaking her up, we all did. We had a few little blips with the feeding tube and she did vomit once, which sent us into a panic over her cortisol levels and whether or not we needed to give her an extra dose. We are still unsure about the feeding tube placement, oh me.
We are juggling SEVENTEEN medications as well as her ddavp shots and breathing and respiratory treatments. To say that it’s a full time job is understatement. WOW. Even now, as I write this at 11:30 pm, our alarms are set for 1 am, 2 am, 5 am and 6 am to give meds, change out the formula feeds and check urine output. And it is all so very worth it! To watch Phoebe sit on the living room floor with her toys and blankets and brothers all around is priceless. This day has been a gift! Her spirits are so high, smiles are abundant and silliness abounds!
God’s grace is amazing in what we are able to do right now on zero sleep and with an intense and nerve-wracking med-schedule. Phoebe is GREAT motivation for all this craziness, and having her here is more wonderful than I can put into words. Thank you all for praying her home!