The good news is that Annabelle hasn't had anymore VTAC (serious arrhythmias of many extra heartbeats) since around 10:30 this morning. Dr. Reed, the attending MD, decided to change Annabelle's medication from propanolol to sotalol yesterday. She has had 2 VTACs since the change. At rounds this morning, he decided to up her another 50% on the sotalol to try to keep her from having any VTACs. She gets this new medication 3 times a day. So far, it seems to be keeping the VTAC episodes away. We still continue with daily EKGs to make sure that she is not having any bad side effects to this new medication.
Feeding is still an issue. Little Miss Priss is smarter than most almost 3 week olds and seems to have figured out that she can just play opossom during the bottle feeding knowing the rest will just come on down the tube. So, she still hasn't gotten past 8cc's out of a bottle. This is a huge issue for her right now. She times out around 10 minutes and falls asleep. HLHS babies biggest post-op problem is usually feeding. Her endurance is very low. So, eating for her is like trying to run a marathon with half a heart. Please pray for her to get this bottle feeding down! A permanent G tube was mentioned to us today if her bottle feeding doesn't improve by the end of the week. Pray that she make progress and can figure out this new concept. (She does make the cutest little faces trying to figure what all this eating and sucking is about. It is really comical!)
Another prayer request that I would like to ask of you is to include Julianne (see link to her website on the right) in your prayers. She also has HLHS and is having her second surgery this week. Her story has been so inspirational to our family and has truly helped us through the pregnancy with Annabelle. God has used this precious child and her mom and dad to be encouragers and absolute blessings.
We will work on posting some more pictures tomorrow...
7 comments:
The article in the Charleston paper was really great. I'm so glad y'all did that so others can learn from your experience. We are praying that Annabelle will make progress with bottle feeding.
Love, Joe and Kim
Thank God that Annabelle seems to be taking the new medication well!! The article in the Courier was wonderful!! We'll continue to pray for better feeding sessions, and for Julianne!!
Heart Hugs!!!
Betsey, Cooper, & Russell (SLHofSC)
I am so glad that Annabelle is responding well to the new medication. We will continue to pray for her that she will get the hang of her feedings. The article was great. It just brought tears while I am sitting her at work reading it. Will keep the prayer chains going and may God bless you all.
We came across your blog when searching Google for MUSC PCICU. We wanted to let you know that Annabelle is still in our thoughts and prayers.
Laura, Lee, and Graysen Slusher
Just read the article! Wonderfully written! We'll be in prayer for her eating and Julianne as well! I just thank God you have been so open with Annabelle's story. I know it's a blessing to everyone! She is just beautiful! Give Wyatt a hug from us.
God Bless!
Sara & Family
Thanks for continuing to post---it is so great to be able to follow all that is going on with Annabelle. It also helps to know what to pray for; we will concentrate on the feedings this week. I swear, Cody asks to pray for this little baby he doesn't know EVERY night! I'll be telling him about Annabelle's friend, Julianne, too, and we'll add her to the list. :)
love,
tiffany and family
Our 13 year old son has left hypoplastic heart syndrome. He had the three heart surgery regimen. Dr. Bradley did his third surgery. He can run and play like the other kids. The medical staff are wonderful at MUSC Children's hosp. The first couple of years are rough. Our prayers are with you.
Kroninger Family, Charleston
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