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I’ll start with the positives! We decided to keep big sisters here in Colorado with us one more week. My mama heart needed some more time with them as last week was such a blur. I think they needed to get some much needed sister snuggles in too Gabby girl is finally opening her eyes a little and has been curiously checking the world of the hospital out! She only stays awake 5-10 minutes at a time typically, so it’s pretty sweet when the little sugar is alert.

She is down to her pulse ox monitor on her foot, her PICC line in her left arm, NG tube in her nose and EKG leads that monitor rate and rhythm and how fast she breathes, a NIRS monitor on her back that monitors how much oxygen she uses in her abdomen. This is about 25% of the cords left from what she had fresh out of surgery. It’s been so nice to see her squishy little baby face again.

This afternoon Audiology came in and did a hearing exam, she passed with flying colors! Child Life Services came and did hand prints and foot prints of her cute tootsies and paws; Gabby was so calm through the whole thing I will have to do another post about Child Life Services they have been absolutely amazing to us and the big sisters.

Today has not gone exactly how we hoped. We thought we would be packing up her CICU room and moving to the step down unit, but it looks like we are staying in ICU until they figure out what’s causing her heart rate to be so high. They did an echo this morning, that came back all clear which is good. We are waiting to hear results about the EKG they ran. The poor little honey was pretty fussy this morning she has the most painful looking diaper rash, they are doing their best to treat it! They also put her back on Milrinone to double check and see if that helps her heart rate come down and rule it out ( although I don’t think it’s working.)They kept reassuring us the heart rate would eventually lower, but I think worry officially set in this morning which was a little unnerving for us. Right now her heart rate ranges from high 180’s to 200. They would like to see her in the 150’s. Praying they find a solution and resolve the issue soon!



Hi, thanks for stopping by!

Hey thanks for stopping by! My name is Kayleen, I am fairly new to the heart mom community.  We found out at our 20 week anatomy scan that our baby girl has a severe Congenital Heart Disease called HLHS in October of 2022. 

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