On the Homestretch?

Last week we "roomed in" with Anna, as the doctors call it, a couple nights to prepare for caring for her at home. She was still hooked up to her monitors, but we were with her in a separate room and were responsible for all of her caretaking... giving her medicine, feeding her, cleaning the breast pump stuff, logging intake volumes, reporting breathing spells, changing diapers, etc.). We didn't get much sleep - especially Angie (4 hrs total over about a 2-day period) - but we wanted to make sure we could take care of her for 2 days since eventually it will be much longer than that!! After the second night, the doctor came in and told us we should both go home and get some sleep, which we did. Our bed felt like a piece of heaven.

Today was the day we anticipated bringing Anna home, based on the doctors' continual assessment of her progress. Angie and I have been concerned about her periodic breathing spells (where she holds her breath and her heart rate and oxygen levels go down), and if at home she would be receiving an apnea monitor, but based on Anna's clinical symptoms which were all discussed YESTERDAY with the doctors, there was not a medical necessity to have one. Anna has had periodic breathing, but no documented "apnea" spells in the last couple weeks. We looked into getting a monitor on our own, and found out we would still need a doctor's order to get it (regardless of self pay vs. insurance pay). The idea of going home without a monitor felt like flying blind. We were praying about what to do, and... God answered our prayer very specifically: OVERNIGHT, Anna had not one, but two, apnea spells! Normally, this would obviously not be a good thing, since it demonstrates she still has a ways to go; but at this point, the more information the better. So TODAY, the apnea monitor went from "no clinical support to order one" to a requirement. That was an answer to prayer - and much better than our desire to just somehow get a monitor. Anna's spells gave everyone a bigger window into how she is really doing. We know that God is in charge of her little body, and we are thankful He continues to protect and sustain her.

So for this week, Anna will be getting caffeine again to help with her breathing, and the doctors will monitor her progress over 3-5 days expecting the spells to diminish back out of the apnea category. She'll also have one more blood panel to make sure she is making and maintaining her red blood cells. Lord willing, if she "passes" both of these tests, and barring any unexpected events; we would be bringing her home sometime either Wednesday, Thursday, or Friday! This idea of going home was always a theoretical future event - one that we neer spent much time thinking about, since it would be getting so far ahead of ourselves - and now it is coming upon us.

We praise God for His faithfulness. And we want to live out what Asaph proclaims in Psalm 73: "For me, it is good to be near God; I have made the Lord GOD my refuge, that I may tell of all Your works."

Here's Anna getting her caffeine.