Yesterday was a rough day. She started to go downhill, and her treatment got upped. She's on CPAP, and has Respiratory Distress Syndrome / Premature Lung Disease. Then we found out that in addition to those things, she has Pulmonary Hypertension, Heterotaxy Syndrome, a too-thick muscle on the right ventrical of her heart, also has a hole in her heart, between two of her ventricles - there are also some other heart concerns because of the heterotaxy. They were also concerned that she might not have a spleen, and other organs might be compromised or have trouble (like her kidneys or liver)
Today, they tried to put in a PICC line (basically an IV that goes in her arm, through the vein to the heart), but after 3 failed tries, they stopped. She also had another echocardiogram, and an abdominal ultrasound. The techs wouldn't tell us anything, except that at one point, the US tech labeled the spleen, and DH said "is that the spleen?" and the tech said "yep" ... so that was really relieving to us. The neonatologist had said that she would be really surprised if SweetPea had a spleen because of the heterotaxy.
She's on ataban(?) and morphine right now to keep her calm (she's a very feisty baby!), and a med for her pulmonary hypertension, a med for her heart, and lots of antibiotics ... she's eating well through a tube that goes to her stomach, but is really puffy from all the fluids and IVs.
Tomorrow, SweetPea is being transferred to a children's specialty hospital, so she can be surrounded by more doctors, and have a cardiologist and geneticist work on her case. Our neonatologist works in the NICU at both hospitals, so we will have some continuing care from this hospital to that one.
Anyways ... SweetPea is a week old today. I've held her once, and I've seen her open her eyes twice. This may be the hardest thing I have ever been through. I'm so emotionally numb most the time, that I can't even cry, because I keep expecting that I need to brace myself for more bad news. The blessing is that a lot of this stuff is NOT from being premature - its stuff that would have caused problems down the road, but because she was early, and life flighted to a better hospital, it was discovered now. We know that Heavenly Father is in charge, and that only He knows what is meant to be for our beautiful little SweetPea, and as hard as it is, we are trusting in Him.
Saturday April 23, 2011
on bubble cpap
Sunday April 24, 2011
on high flow O2
Tuesday April 26, 2011
back on bubble cpap, and very mad!
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