Email Update Sent November 18, 2006:
It's been more than a month since we updated you on Elizabeth's progress. Before the inquiring emails turn into threatening ones, here it is...
Elizabeth has stayed out of the hospital for about 2 months! This "minor miracle" has allowed us to find something of a routine. It has also allowed us to make two trips to Clovis, where we loved making up for the family time we missed earlier this year. Elizabeth recently weighed in at 20 pounds, forcing us to purchase and install a larger car seat. And her recent chest x-ray and labs show that her diuretics are working to keep off the abnormal fluid build-up. Additionally, a recent ultrasound of her heart showed that one of her three heart abnormalities has completely disappeared! When they looked, her ventricular septal defect had closed, and the other two issues were stable. We obviously believe that God healed it up. Join us as we praise Him for this development!
Many of you have been asking about the status of her liver and portal vein thrombosis. At this point, the surgery to correct things is being put off because the medications are currently successfully keeping things in check. The longer they can put it off, the bigger she'll be and therefore, the safer the surgery will be. There are three situations that would prompt surgery: if she stops growing due to poor absorption of nutrients, reaccumulates fluid despite the medications, or if one of her dilated veins ruptures. Every day that passes gives Elizabeth's body and God's knitting more time to build passages around the blockage that could potentially keep her from needing surgery. God knows we'd love to avoid another surgery and hospital stay...especially since our insurance in St. Louis won't be as good as it is here!
With surgery on the back burner, we've had time to start noticing and worrying about some other "issues." Elizabeth's left foot remains quite swollen. Like her funky-looking feeding tube site, it's becoming just another "one of those things" that we hope will resolve at some point. We're not stressing over these though, as there are bigger fish to be fried, especially Elizabeth's vomiting and lack of progress in oral feeding.
Elizabeth is currently vomiting 2 to 3 times a day. Even worse, she wakes up every night around 11pm and again at 5 am to vomit some more (this is our least favorite of her tricks). It is likely that increasing doses of her diuretics are a major contributor. These are the mediations used to keep her fluid build-up from returning, so reducing the dose is NOT really an option. The vomiting is exhausting for her, increases the chance of her dilated veins rupturing, erodes her developing teeth and makes for some nasty halitosis! It is also very hard for Matt and I to helplessly watch our little girl throwing up. We have no idea how she stays cheerful through it all.
The other major difficulty continues to be Elizabeth's eating. More accurately, her lack of eating. Now, she has even stopped taking a bottle! There are two forces working against her learning to eat. The first is her complete lack of hunger. In order to keep her gaining weight, we have to continuously give her small amounts of formula through her feeding tube. Because her stomach is constantly full, she has lost the ability to sense and interpret hunger. We are trying to get her to the place where she tolerates intermittent boluses of larger amounts of formula. Theoretically, during the breaks in formula flow, she'll relearn what its like to feel hunger and then learn that taking things by mouth will satisfy. At this point, our moves toward boluses of larger volumes just make her vomiting worse. The second major roadblock is Elizabeth's aversion to food. The slightest morsel of food or drop of liquid in (or even near) her mouth is enough to trigger her gag reflex. This isn't surprising given that she has never been able to use her mouth to bring comfort (with all her teething pain and vomiting). Of all that's going on, her feeding issue definitely has us the most frustrated.
Would you please join us in:
1. Asking God to end Elizabeth's vomiting.
2. Asking God for a breakthrough in Elizabeth's eating skills.
3. Thanking God of closing the hole in her heart.
4. Thanking God for keeping Elizabeth out of the hospital and responding to her medications.
5. Asking God to remind us to be more diligent in sending out updates!
Thank you all for continuing to care,
Sara, Matt and Elizabeth