We got our doctors appointment rescheduled for yesterday afternoon and went in for our regular check up. Because the little guy was in an awkward position last time they couldn’t get a good look at his heart, so we had another u/s. They found something that concerned them on the ultrasound and sent us to the University of Utah for more tests this morning. We met with a radiologist, genetic counselor and perinatologist and it appears that our baby's heart is not developing properly. They did an amniocentesis at the hospital today which should give us some answers on Monday as to whether it is a chromosomal issue or just a heart problem, and we are scheduled for a fetal echocardiogram next Friday morning to get additional information.
The term they used to describe what they think they are seeing is Hypoplastic Left Heart Syndrome. It means that his aorta and left ventricle of his heart are underdeveloped. If this is the problem, it’s pretty serious, but they can usually correct the problem with a series of surgeries, the first happening shortly after birth. If the problem turns out to be a genetic disorder, that could mean a whole other set of issues entirely that range from not too bad to only living a few weeks or days after birth.
Either way, it appears we are in for a long journey ahead. I think my sister put it best when she said, “This is really going to suck, but somehow you’ll make it through.” Maybe our miscarriage in the fall was just a little preparation for bigger struggles ahead.
So far both Marc and I are holding up fairly well. In fact, we’re surprisingly calm (for the most part). I feel just fine other than a little sore from the amnioscentisis and plan to go in to work tomorrow since the alternative is to sit around a mope for the next 4 months. The baby is still kicking around and everything seems normal, the only difference is we know now that it’s not. I think a lot of it just hasn’t quite sunk in yet.
Please keep us in your prayers as we could use all the help we can get right now.
The term they used to describe what they think they are seeing is Hypoplastic Left Heart Syndrome. It means that his aorta and left ventricle of his heart are underdeveloped. If this is the problem, it’s pretty serious, but they can usually correct the problem with a series of surgeries, the first happening shortly after birth. If the problem turns out to be a genetic disorder, that could mean a whole other set of issues entirely that range from not too bad to only living a few weeks or days after birth.
Either way, it appears we are in for a long journey ahead. I think my sister put it best when she said, “This is really going to suck, but somehow you’ll make it through.” Maybe our miscarriage in the fall was just a little preparation for bigger struggles ahead.
So far both Marc and I are holding up fairly well. In fact, we’re surprisingly calm (for the most part). I feel just fine other than a little sore from the amnioscentisis and plan to go in to work tomorrow since the alternative is to sit around a mope for the next 4 months. The baby is still kicking around and everything seems normal, the only difference is we know now that it’s not. I think a lot of it just hasn’t quite sunk in yet.
Please keep us in your prayers as we could use all the help we can get right now.
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