That's all I really want! Waiting and wondering is brutal! Tomorrow morning at 7AM, our precious Rachel will have a heart catheter to get an "inside look" at what's going on in that little heart of hers and look for answers as to why her single ventricle is weakening. Most importantly, though, are the answers we need, that until now, have been kept secret within that tiny little body of hers. Pressures within her lungs and the chambers of her "half heart" will reveal if she is able to support the second surgery she so desperately needs (the Fontan), or if we need to move toward a heart transplant instead. Most children receive the Fontan many, many years before the age of 7... so at this point it's all record-breaking, "odds"-smashing, and statistical anomalies, so only the Lord who made that precious heart of hers knows the answers that lie within... We're praying that He will share some of those secrets with us tomorrow, so that we can finally begin to understand what the next months... what the next years, hold for our Rachel Hope.
Rachel and I headed to Gainesville earlier today for some pre-op echoes, EKGs, and at least a thousand consent forms. I was asked the same question, over and over again today, by every person that laid eyes on Rachel. "Do you have any questions?" Ummmm.... I have nothing BUT questions! Maybe the better question is one I should be asking each of you!... "Do you have any answers???" I finally settled on asking Rachel's cardiologist if he had any "hunches"... I mean, at this point, I'll take whatever I can get! He was, as expected, reluctant to share any "hunches" he might have regarding tomorrow's outcome. I can't say I blame him.... but geezy-wheezy! Could you throw me a bone or something??? My own hunch is not a very optimistic one. I can't really narrow it down to one single reason I feel that way... just an overall consensus of my thoughts in several months of mothering. Most notably is her weight... She was weighed the first time she walked into this hospital 5 months ago, just a few days after she arrived home from China- A whopping 37.4 pds! And today? 37 pds! It's hard to describe just how tiny she is. I dress and undress Rachel several times a day and have presided over every shower and bath she's had for 5 months counting... and yet the sight of her naked body still takes my breath away! The only description that might be close is what a child might look like, walking out of a concentration camp. It alarms me and I have tried every possible tactic under the sun to get weight on her little bones. The doctors tell me, however, that this problem is typical with a weakened heart like hers... All available energy must be saved for the "pumping power" that weak ventricle needs, and there's simply nothing extra left! I would honestly consider donating some fat cells to my precious daughter's thighs, but I'm not sure if that would be more about ME, that Rachel!!! :-)
I've entered the medical "fog" that seems permanently lowered over Shands Hospital and I can't say I enjoyed my reintroduction to it's hallways today. But I am grateful to be surrounded by such an incredible staff of doctors dedicated to giving Rachel HOPE! I am keenly aware, especially around here, that every day is a gift with our precious girl and that life simply doesn't hold any guarantees for her tomorrows. So today, I tried to do everything I could to make it a special day for Rachel and me to share... I enjoyed every single moment of it and I'm pretty sure she did too! She is well prepared for tomorrow (even without a translator this time!) and has chosen to walk into this scary place again with a smile on her face! This little girl blows me away... I still have so much to learn!