Annabelle loves lights. I'm not sure if I've ever mentioned that here before. The moment she enters a room, most times, her eyes go immediately to the light above.
Sometimes she'll be sitting in our living room and look up at the light, and the biggest cheesiest grin comes across her face. Some times she even starts laughing and giggling at it. It's absolutely adorable to see.
I always wondered what gave her such delight over lights. They could be just ordinary lights that she smiles and giggles at. So many people have commented to me, "I wonder what's so interesting about that light?" after seeing her stare and smile at them.
I always chalked it up to being in the hospital for so long. WHen you lay there for days/weeks on end, with nothing to see but the lights above (well, that and the toys we hung from them!) it made sense that she was drawn to lights. But the huge smiles, the looks of pure joy when she saw them... I hadn't quite figured that out yet.
A few months ago, my mom mentioned something to me, and at first I dismissed it as a wee bit "out-there." Not that it wasn't possible, just not... well, provable.
She said she wondered if she was seeing, or had seen, in the past, angels. That she'd heard a story of a child who was close to death, and survived, come back tell about the angels he saw on the ceiling of the hospital.
While I'm not claiming this angelic experience for my daughter, the thought made me smiled. That God might have brought something so wonderful and sweet to my daughter in her moments of extreme pain, to let her experience joy instead of hurt, made me smile. It sounded like something my God would do.
The other day, I saw these Youtube videos posted by another heart Momma on Facebook, then again on another blog, and even on some major news medias.
This young man had a heart defect, and passed away a few weeks ago, on Christmas Day. His family found these videos he'd made.
I think... I think there are a lot of things we don't understand about this life and about God. I've decided that we aren't really meant to "understand," even though we have a thirst for it (the whole tree of knowledge thing.) So I don't claim to know, or understand, but every time I see Annabelle look at those lights, and see that big grin come over her face, my heart is overwhelmed with gratitude to God for bringing delight, in whatever form, to my daughter who has been through so much in her short life.
Just a quick update. Annabelle continues to do well, for the most part. Still battling her stuffy nose. And she still dips her SATs a little a night, but alwas comes back up. Talked to pulmonology yesterday, though, and they are concerned about these dips. They've ordered an official pulseox study, where they bring home a special, NICE pulse-ox, and she stays hooked up to it all night. It records the results, and will give them a really good idea of how her oxygen levels are staying.
The concern is that even though it feels like they come right back up, low oxygen levels over time could lead to pulmonary hypertension (or, since they thought she might have a minor case of it anyway, a higher level of PH) and full-blown pulmonary hypertension is NOT GOOD. It is incurable... and could lead to the need of another heart transplant in the long term.
If it shows the levels are lower than liked for any period of time, we may have to put her back on O2 when she sleeps. We can handle that, we have before, but blah. I'd hoped to be able to stay off of it!
She's also throwing up more than normal. The doctor things it's because of her stuffiness, that it's causing her stomach to be upset more. We're finally going to see a GI specialist though at the beginning of February, so I'm praying they'll help make sure there isn't something else that is contributing to this.
Oh, and if you didn't see my last update about her newest BIG milestone... click here!