Monday Update

The last two days have been so chaotic I haven't updated. Yesterday (Sunday) we woke up to the news that Willow had been out of heart block, in sinus rhythm since 5am! We were elated! She was beating in perfect rhythm at 130bpm! We had gotten our miracle and we believed this was a game changer. At 8:30 am they took her chest tube out and when they checked her last pacemaker wire, it had come out on its own! It had puss around it so they believed that the infection around the heart had agitated it and pushed it out. They were not too concerned, though, because she didn't need it. Her heart was beating in perfect rhythm on its own... until around 9am when her heart went back into heart block and was in partial heart block (anywhere from 50-100bpm). Her heart rate was everywhere for the rest of the day and now they didn't have the back up pacemaker. AND, they can't put a pacemaker in until she is over her infection in 6 weeks. So they started her on a drug called Isopryl that increased heart rate. It increased her heart rate, but made her agitated. And since yesterday her heart rate has been all over the place. The Docs just took her off the Isopryl because they don't believe it was working very well and they are going to try putting her on epinephrine (adrenaline) which is another drug that increases heart rate. Most of the doctors were so encouraged that she was able to come out of heart block- that her heart is able to conduct it's own beat. They are also hopeful, since she is so variable in heart rate, that her heart is just trying to heal and that she will come back out of heart block into normal rhythm. They came in to talk to us today and it's so hard because it is just a waiting game. This is what they said- Best case scenario- Willow comes out of heart block and has a beautiful sinus rhythm. They watch her for a few days, then send us home to do the antibiotics at home. Worst case scenario- we stay here for 6 weeks on IV antibiotics and she has another open heart surgery to get an internal pacemaker put in at the end of the 6 weeks. What's hardest about the last few days is that Willow doesn't feel well. She cries, won't eat, throws up a lot of feedings, and hasn't smiled for days. Tim and I have worked our tails off to try to lay it all down. To try to give up control, but these days have been so stressful it's been a battle to remain calm and and a moment by moment decision to give it to God. Emotionally it's just really exhausting. Prayer requests:
1. For a miracle. Your prayers are being heard! She has been out of heart block once, she can do it again! It would be a game changer, and make EVERYTHING better for Willow.
2. For the infection to be treated effectively and easily with the antibiotics we are giving her.
3. That Willow would feel better so she could start eating well and smiling more.
4. For more progress than regress. That good news would become the trend rather than curveballs.
5. For Tim and I as we will have to make some big decisions as to what the next 6 weeks will look like for our family. If her heart conduction doesn't get better by the end of the week we will start making those decisions.