Sadie had (yet another) procedure at Riley yesterday. She had a scope of her "anatomy" with the surgeon and urologist. They were both pleased with her progress. The urologist asked how Sadie was doing with peeing on her own. (She's been allowed to pee in her diaper, and we just emptied her clamped catheter a couple of times per day to make sure she was emptying well.) Not to get too technical, but we've had to make sure that she was really emptying her bladder. Everyone has a little urine left in their bladder after they void, but it shouldn't be too much. We've never gotten more than 8 ml (less than 2 tsp.) when we've unclamped her catheter. The urologist couldn't believe it. He gave us this look that was part delight, part disbelief, and part, 'you guys must be measuring it wrong.' Even though her bladder appeared normal when he scoped her yesterday, with the high defect she had the odds of it actually functioning were not spectacular.
Once again, Sadie doesn't care that the odds are against her.
What was supposed to be a quick-scope-and-home-before-lunch turned into another all-day marathon at the hospital. The urologist really wanted to test her bladder by doing a test called a voiding cystourethrogram (VCUG), so after being discharged from outpatient surgery we headed to his office, and then to x-ray. Dye was injected through her catheter and into her bladder, and the radiologist watched while her bladder filled and emptied. And it emptied completely, so the urologist took out her suprapubic catheter! Yay!
Chris and I were talking about all that Sadie has been through in the past 11 months. She came home weighing 5 lb. We had to feed her through a feeding tube every 3 hours around the clock. Then she took thickened milk in a bottle, and finally thin milk. About the time she started eating normally we had to start in-and-out cathing her, followed by a bout of sepsis and a hospitalization. Next came physical therapy for gross motor delays. Then her PSARVUP, dressing changes, two catheters, etc. And today we are down to just her colostomy (which the surgeon plans to take down in about 6 weeks).
The medical drama is winding down for the first time in over a year. Things happened so fast that I didn't even have time to process it all. Now I can't believe that we are approaching 1 year anniversaries of receiving bad news, taking my first ambulance ride, having a premature delivery. The flashbacks are worse than actually living it. We struggle to find things to talk about besides doctor appointments, lab results, and bowel and bladder function. Sadie and I had lunch with my BFF Holly last week, and even with her it was so hard to find nonmedical things to talk about (but we managed to get our girl talk on!).
Sadie's first birthday is fast approaching, but it's like she's been born all over again. This baby girl is much different from the one we had last year, or even last month. She has far fewer abdominal appendages for us to creatively hide under her clothing. She's happier; she talks more and laughs more. I'll never forget the sting of learning she was dying inside of me, hearing the words "birth defect" used about my child, spending Christmas in the Ronald McDonald House. But for the first time, things truly feel (mostly) normal.
Tuesday, November 23, 2010
Saturday, November 13, 2010
|A cupcake and grumpy lamb on Halloween.|
Sadie had her first surgery follow-up appointments this week. She saw Dr. R (urology) on Monday. Her foley catheter was removed and her suprapubic catheter was clamped. We empty the catheter once a day to make sure her bladder is emptying normally on its own. She saw Dr. S (surgery) on Thursday, and he is concerned that her colostomy is narrowed. Sadie is now scheduled for a scope of her bladder and bowel in a week. If her bowel looks good (healed), her colostomy will be taken down. If not, her colostomy will need to be revised. Either way, in Dr. S's words, we can expect that she'll be having surgery, "soon." And "soon" is sooner than we planned.
Dr. R was very pleased with Sadie's progress. His comment was, "wow, she's a good healer." I'd love to take credit for that. I wish I could say that, because of my great detail to the care of her wound, or because my breastmilk contains so many wonderful things to help her heal, Sadie's recovery has been all but flawless. But I can't. Nor can I give credit to Sadie for being genetically blessed. No, Sadie is healed because she rests in the hands of The Great Healer. Every day we have to surrender her back into His loving arms and trust that He will take care of all of her hurts in ways we never could. He will wipe every tear, mend every wound, and calm every fear. Even when Mom and Dad can't.