Thanks for being patient with me as I tried to re-coop these past few days. I can usually pull myself back together pretty quickly after a hospital stay/traumatic event, but I am just so worn out after this past week.
Update on Evie: basically the docs think that her apnea spells (when she stopped breathing the two times) happened because of gunk in her upper airway from her cold, and the fact that she doesn't have a big reserve of air in her lungs because her chest wall is still weak, and her lungs are still working in such a small area. She is retaining CO2 in her blood, meaning that she isn't breathing out deep enough to get all of the carbon dioxide out. We can put her on oxygen to get the oxygen in... but there isn't really anything we can do to get the CO2 out. She is also still hovering around 9 pounds. We want her to slowly gain weight... not so much that her fragile bones can't support it, but still gain.
SO our main prayer request is that the treatment will work faster than her disease progresses. Many times this past week I heard... "This seems to be the natural progression of the disease," which is just so hard to hear. I have felt like she was slowly improving for so long, and now with the oxygen, not gaining that much weight, and these apnea spells it worries me so much that she may be getting worse instead of better. I guess in the past the other kids on this same study really started getting better around the 3 month mark... so we have a few more weeks until we hit that point.
This week is a landmark week... meaning we will have lots of tests, urine, blood, etc. It is getting really hard to watch my baby cry. I have stayed as strong as possible as her mom, knowing that this is the best thing for her, but after a week of tears in the hospital, I am just ready to bundle up my little girl and keep everyone else away from her. Will you pray for strength for me? I have done a lot of crying in the past few days, and need a little more catch up time than I am getting.
Love you friends... I am going to set an alarm on my phone tomorrow reminding me to POST PICTURES on my blog... it's been so long! So look for pictures soon.
Oh and on a lighter note... we asked Lyla what her favorite animal was tonight... and she said "ghost" and then changed her mind to "llama." Really... a ghost!? Oh Lyla.... (: