Today was full of huge strides for the Kochs. We started by getting Amanda and all of her compiled stuff from 40 days there moved out and into the car. It was a little odd to be going through the whole process of pulling the car up to that curb, pushing the cart full of stuff out, and having the Northside helper push Amanda out in the wheelchair, but not have our baby to take with us also. We were in a such a big rush to get down to Egleston that we didn't get caught up in it though.
We arrived at Egleston around lunchtime and Audrey was still doing really well. In prep for the pacemaker surgery they could not feed her after her first morning feeding at 7 or 8 am. She seemed ravenous and cranky which provided Amanda and I a good opportunity to try and work with her to calm her as much as possible. The surgery was supposed to be around 4:00 but ended up actually not being until around 5:30 which made for a long day of anticipation. Finally they walked us down to the operating room while they wheeled her and then left us in the family waiting room while they pushed her through the doors. It is extremely emotional to see your 4 day old child wheeled into the operating room for surgery. They called us with updates during the procedure and by about 7:30 the surgeon came out and told us they were done and it had gone very well. After a slight wait we were able to go back into the CICU to see her although she was still asleep from the meds and on a ventilator to assist the breathing. As she wakes up tonight they will attempt to get her breathing on her own again and off of the ventilator and eating once again. We were extremely relieved and excited to be over this hump that we figured was coming one day, but just didnt expect it to be this soon. She will now be able to safely take the beta-blockers to help with the elongated QT interval. The pacemaker itself is about the size of a silver dollar and in her abdomen area with two leads running to her heart. The technology is pretty amazing and we saw it in effect right away looking at Audrey's heartrate monitors.
Having a long QT interval is generally an inherited trait. A month ago we sent Amanda's blood away for genetic testing to determine if she had the specific genes associated with long QT also. Some additional huge news that we got today was that Amanda's genetic testing results came back NEGATIVE so we do not need to be concerned about her heart also. Big big relief.
Overall, a great day of progress and the kids were ecstatic to have Mommy back at home tonight to help with bedtime.
- Mark
It was so wonderful hearing the great news of Audrey's successful surgery. You are all in my thoughts and prayers. I pray that you'll all be home together very soon.
ReplyDeleteJan Doyle
friend of Nancy Perrine
Amanda and Mark,
ReplyDeleteAs I read the post tonight of when Audrey's surgery actually occurred yesterday I marveled at God's timing. When I got the link of the blog yesterday I read through it to the most recent post up to and regarding the surgery. As I read I realized that she must be out [of surgery] because it was 5:30pm at the time I read the blog! I said a prayer immediately for her healing and for God's hand to be over her at that moment. I thought she must be in recovery but what I didn't know was that she was actually in surgery then! Ahhh, God's timing is always perfect! When my daughter Carrison was gravely ill in 2008 I learned to stop at any moment to pray no matter where I was or who I was with and to always take those gentle prods from the Holy Spirit as a divine hand on my soul asking me to pray and to take it seriously. And so, I took this prod yesterday about Audrey. She is clearly in Christ's hands and is a breath from heaven. My heart and prayers go out to you both as you watch your precious baby girl heal and grow with God's hands enfolding her. "For it is by His stripes that Audrey Claire Koch is healed in the name of God" Isaiah 53:5.
Many Blessings,
Kathryn Bulloch
Daisy Troop Co-Leader 10571