We're happy to report that the "aggressively conservative" plan is working! Elizabeth has lost between 300 & 400 grams two days in a row now and has the shrinking girth to prove it. She's lost close to 4 cm. around her belly and even looks much more fluid balanced overall (as opposed to distended in the middle and really skinny everywhere else). These are all good numbers.
In consultation with our GI, we've agreed that it's best to keep her "in house" through Thursday, when he will be able to do the endoscopy himself to look at her verices and biopsy her intestines. While it means a few more days in the hospital, it also means avoiding the stressful transition home and back again for a procedure, and it means we can keep her IV in and don't have to "stick" her again. She's already in the "hospital zone," and while she's not thrilled, she's created a psychological space for herself, so she's coping really well. To go home and come back so soon is just too stressful for her. This will also give us a chance to watch her closely for a few more days and ensure that her fluid balance remains stable. Grandma Harms can stay until Monday, so if all works out, she can help us with the transition home perhaps on Friday.
We'd appreciate your prayers for a few things in the days to come:
~Elizabeth's stability (emotional, psychological). Grandma's presence here really helps that, but it also means she is resistant to almost everyone else, including Matt & I. Maybe we've held her for one to many procedures, or perhaps it's just that Grandma's 'untainted' by her yucky feelings about the hospital, but it's hard for us to walk in to see her only to be greeted by, "Buh bye! All Done, GRAAA-MAAAAA!" We love that they're so attached, but struggle with how exactly to respond without feeling like she's never going to love us again! (which of course we know isn't true, but hey...we're vulnerable too!)
~Mommy & Daddy's stability! (see above) We're both exhausted and fighting colds, Matt's board exams are looming and in the middle of all the stress (let's face it, he's basically doing a Pediatric GI fellowship now too!) he's struggling to find time to study and study effectively. Please pray for space and time and mental rest and effective/multiplied study time for him.
~Elizabeth's overall health. I'll be honest. When we come into the hospital, we live with the nagging feeling that we're just waiting for another shoe to drop. Elizabeth has provided us with so many experiences of the simple thing deteriorating into something amazingly complex and even life-threatening. We aren't fatalistic or superstitious, but we do walk with a degree of pragmatism and struggle not to become fearful. In the process of getting an echo during this hospitalization, we've discovered another possible problem with her heart. We've been in contact with our cardiologist from UCSF and now she's in contact with our new cardiologist, so things are being looked at by some very astute minds, but we're weary of the thought of yet another problem for our sweet one. Please pray for Elizabeth's health, wholeness and if you have the faith for it...complete healing!
Thanks so much for your care for our family.
PS - Some of you have asked about how you can help us right now. A friend here has set up a website to coordinate people who want to help with practical things.Click on this link and sign up if you want to bring a meal by the hospital, or home, or help in some other way: Helping Hands Website We're so grateful for the support of everyone...near and far. We love your emails, voice mails, cards and meals. You are truly making it possible for us to keep going these days!