Thursday, March 19, 2015

Ticking Along

Short update: Eden had her check up with the cardiologist today. There are two who come from Children's, Dr. Kane and Dr. Sharma. Today we saw Dr. Sharma.

Everything proceeded as usual: she was weighed and measured, her blood pressure, pulse, and oxygen levels were taken, then we were moved into a room for her Echo.

Her oxygen levels are slowly lowering. In the hospital in January, she was consistently around 98 or so. The last time we were there, she was around 95. Today she was at 88. We don't want her to go below 80 but that's the direction we're headed. The cause of this is her pulmonary stenosis: it's actually thickening, which is making it harder for the ventricle to pump the blood through it. It needs to be fixed sooner rather than later but how we fix it could limit our options for her big surgery later on. Since we've pretty well decided that the double switch (biggest, longest, most complicated, riskiest surgery but fixes the most things at a time) is what we're leaning towards, fixing the PS right now isn't really an option.

What does that all mean? It means that instead of waiting until she's six months old, we'll have her heart cath done in the next two months and her open heart surgery much sooner as well, possibly this summer. Dr. Sharma couldn't give us any idea on time frame because she wants to check with the surgeon (who's name I can't recall) and Dr. Kane before passing anything on to us.

We want her to be as big as possible, so there's talk of enriching my breast milk to help her gain weight more quickly. She's gaining well (she's finally out of newborn clothes at 8 weeks old) and everything else is otherwise great. I'm not totally sure what enriching the breast milk entails, if that means I won't nurse her anymore but will pump exclusively and then we'll add something to the milk, if we'll do a mixture of nursing and enriched milk in a bottle or what.

She's been great. No sign of blueness (which would indicate she wasn't getting enough oxygen) or extra fussiness, she's up to 9#4, she smiled at the nurses and Dr. Sharma and was oohed and ahhed over like usual. She's a really great baby. We're just getting ready for whatever the next few months will bring.

How could you NOT ooh and ahh at this girl? 

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