I've decided to try and write these updates during the day...the situation always seems less bleak after a good night of sleep! Additionally, some of you might get the email in time to pray for the upcoming day's events.
Since yesterday's mid-afternoon update, not much progress has been made. They were able to get another long-term IV in her right arm, allowing them to (finally!) remove her groin IV. Now she can kick her feet around at will (which she has been doing frequently to express her irritation). Sadly, the overnight nurse thought Elizabeth needed a "back-up" IV and found a vein on the side of her head. Now she can't turn her head or wear any of her cute hats!
They managed to fit her in for another try at placing the feeding tube past her stomach. Sadly, they failed a second time, and in trying, caused her stomach to start bleeding. Shortly after the procedure, she began vomiting blood and blood clots, enough that her blood count dropped low and she required yet another blood transfusion. To help get the blood out of her stomach, they had to put another tube through her mouth and down into the stomach. Today, a pediatric gastroenterologist will see Elizabeth to figure out where the bleeding is coming from, how to stop it, and figure out why the feeding tubes keep getting stuck in her stomach.
I briefly mentioned yesterday the problem with Elizabeth's electrolyte levels. I thought it would turn out to be a lab error...but I was wrong. The reasons are still unclear, but Elizabeth's sodium did, in fact, get dangerously low. Often, a level that low would produce a coma or seizure. Thankfully, neither of these developed. The Team is working hard to find out why the sodium got so low, and it may be something as stupid as giving her the wrong IV fluids.
I haven't mentioned this before, but since she began opening her eyes, Elizabeth has been periodically making strange eye movements. I thought they were probably just "ICU baby" eye movements and didn't make a big deal of them until they started becoming more frequent yesterday. So ophthamology and neurology stopped by to see her. The ophthamologist said that everything looks good with her eyes and agreed that the types of movements I was seeing are common in sick newborns. The neurologists agreed, but recommended that we exclude the possibility of seizures with a brain wave scan (an EEG) and to some time in the future do an MRI to see exactly what's going on with the brain. The EEG was performed yesterday, but the results aren't back yet. We are reassured by these findings.
Watching Elizabeth gagging on the tubes and frequently vomiting has been one of the hardest aspects of our journey so far. When you can't do anything to soothe her, things start feeling hopeless and unending. We are trying hard to keep perspective, but these "light and momentary afflictions" seem too heavy and long-lasting.
On the brighter side, Elizabeth is now three weeks old (technically not until 4:02pm). There were times earlier in her hospitalization where we weren't sure she would survive this long. For this we are truly grateful. Additionally, one of our favorite nurses is taking care of Elizabeth today and has NO other patients to distract her.
For your prayerful consideration:
1. That Elizabeth might be able to find a comfortable position and some sweet sleep
2. That the bleeding from her stomach lining would stop and a cause easily found
3. That her white blood cell count would come down and remaining infections cleared out
4. That her mother and father's hope would be restored and faith buoyed
Matt and Sara