Sunday, November 9, 2008
We made it home late Friday night with oxygen in tow. I'm definitely grateful to be home to my boys and have Lilah back in her own bed, but really disappointed that she's still needing the O2. Like last time, coming home makes our situation somehow more "real". I felt like we had just barely gotten to a place where we were at least getting into a routine and now we have even more equipment and medicines. That brings the grand total of daily medicines to 10, with half of those given twice a day and some extras on occasion. Lilah's "equipment" includes and chest strap/electrode contraption for heartrate/apnea for when she's asleep, an O2 monitor around her foot, and oxygen in her nose hooked to this huge O2 generator. All of these things (and mostly the O2) make it really hard to transport her from one place in the house to another. One of the many things that weigh heavy on my heart right now is that she has hardly any 'baby time'. I feel like it's one procedure after another. She's doing pretty well, but seeing that oxygen in her nose makes her look so sick and absolutely breaks my heart. Pray, pray, pray that we can get her off of it soon!