We went to see Dr. Frommelt today at Children's Hospital. Frommelt is the doc who told us all those many months ago that Zoe's heart was strong and her tetralogy was correctable.
Zoe is 7 pounds, 2 ounces and almost 23 inches long.
We explained all we knew about Zoe, about her tet fits, about her heart racing. About our fears when she cried.
Dr. Frommelt studied Zoe's blood oxygenization and determined based on it and other observations that Zoe's heart is doing pretty well. Her color is good. Her blood is getting to her body and oxygen is getting out. And while her murmur is louder, at this time, even if Zoe were a non-Trisomy baby, she wouldn't operate.
What about Zoe's high heart rate when crying? Is that a function of her tetralogy? Nope. It's a function of her getting worked up, but nothing more. Zoe crying hard won't hurt the heart or open the hole in her heart any bigger. While surgery will be needed at some point, her heart is working pretty well right now.
Frommelt also questions whether the episodes Zoe is having are even Tet fits. They don't sound like it based on her expertise. What typically happens is rapid breathing and sweating. Zoe is experiencing neither. She actually kind of shuts down instead of breathes faster.
Zoe will be disappointed to find out that Dr. Frommelt said we can even put her down sometimes.
Besides being creeped out by the Palliative care nurse - who is exceedingly kind- talking to us about how a visiting nurse is a benefit because she can declare Zoe's time of death from home without intervention from the local authorities, it was a really good visit. We even made a September appointment with the cardiologist.
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Don't forget to breathe. Breathe a sigh a relief, breathe in the beautiful summer weather, breathe a prayer of thanks! All that has life and breath will praise the LORD!
ReplyDeletejust checking on you
ReplyDeleteGood news. Very good news.
ReplyDeleteGreg and Jen...you are always in my prayers and heart. May He continue to bless the doctors and Zoe. We love her so much!!
ReplyDelete"The Lord is near to all who call on him, to all who call on him in truth." Psalm 145
May you continue to feel His strength.
Love - Kirin, Allana, and Caleb
YEAH !!!!!
ReplyDeletePraise God. This should be a cue to you to live one day at a time as normal as you can.
Karen M
Thanks and praise be to God! You are daily in my thoughts and prayers. This is such comforting news, that a doctor is willing to talk about what to do to help Zoe, and not just point at the t-18. She is so beautiful, in ways that my heart cannot put into words. God be with all of you, Greg and Jen!
ReplyDeleteRenee