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Today was our last day together with the whole family for a few weeks. It was filled with March Madness (Go Wild Cats…now that KU flopped!) I am pretty sure some of the nurses think we are insane for how much basketball we have watched the past couple weeks, but I just smile thinking this was all part of Gods timing! We had lots of snuggles on the hospital couch, and were highly entertained watching Della bring Gabby’s Wizard of Oz stuffed animals to life. Corey and I gave Gabby her first solo bath, changed her leads, and pulse ox by ourselves (he claims he’s practically a nurse!) See ya laters are a-lot harder now that our sweet girl has joined us, but this too we shall survive

I knew the day was coming where it wasn’t going to be all good news. Unfortunately late this morning Gabby had to go back on Oxygen. She was dipping into the 50s when she tried breast feeding and did it again during her second oral feed attempt with the bottle. The floor doctor said she probably has some vocal chord damage which makes her swallow wrong, thus causing fluid to go to the lungs. I guess this is pretty common for “Norwood” babies, but it’s hard to not feel a major sting after having a few good days of progress. Her heart rate fluctuated back into the 180s today which may be due to her oxygen dipping, but it’s hard to say.

We are well aware the HLHS world is all about two steps forward, one step back. The step back isn’t fun but we will do whatever it takes to get her safely fed. Hopefully tomorrow we will get her swallow study done so we know specifically what the problem is.

The hospital is a humbling atmosphere, Corey and I feel incredibly blessed we are able to be here for Gabby to love and support her, and hopefully provide her a sense of security. Today may have been one of our “hard” days, but as I sit here and reflect I can’t help but feel a little pride and swell in my heart for making it this far. There is no time to stop, the only option is move forward regardless of what’s thrown at us. Corey told me the other night, “God has blessed us major!” And even after a day like today I can’t help but agree more. Tomorrow is a new day!



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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