So here we are. Jessica and I went to Little Rock on Thursday to meet with a genetics specialist. From our first ultrasound, we learned that the amniotic rating was a 3.2 and should be a 10-12; we also learned that the baby's kidneys were not visible. We were referred to the new doctor because they use a Level II ultrasound which has much greater clarity and due to the extremely low amniotic volume- we were in to see the OB/GYN High Rish Geneticist in two days instead of the usual two weeks.
So, this doctors assessment was that the baby does have kidneys but they are non functional due the numerous cysts that are supposedly on them. The bladder is deemed "not there" because it doesn't contain anything in it. As is the case with the diagnosis the lung are often underdeveloped and if the baby's make it to term live only moments after the chord is cut. From everything I have read, Bilateral Multicystic Kidney Dysplasia is inconsistent with life. This doctor told us that the genetic relevance is negligible and that we don't need to worry about future pregnancies or the possibility of myself, Jess or the kids having the same or like condition. We then met with the counselor which told us that we could induce now or wait to see if the baby makes it to term or possibly "expires" before hand. Oh yeah, because of the lack of amniotic fluid- this doctor commented that there was zilch- he could not tell the sex. He was able to make a definite and "accurate" diagnosis in about three minutes without that fluid but he couldn't tell the sex......hope you get my sarcasm there:)
Then, it his us. And we cried. I didn't think it was going to hit that hard. We drove down to Hot Springs and stayed at the Arlington to talk and stuff. We prayed and talked. Still don't have everything figured out but we got a few things squared away.
On Friday, we drove back to meet with our regular doctor and he swabbed Jess' face to test for staph. He is in agreement with us about continuing the pregnancy. We have had a few ask us how or if it would be harder if we didn't induce now......well, I guess the only thing we can do is ask those people what they would do. Regardless, we have had an overwhelming support and form those people as well. It is a hard situation anyway you look at it. For us, and I am speaking for us only, it is our child, regardless of the age, and we love it and for as long as it lives we will be the parents. If it does pass before term, we will be having a funeral- I feel for anyone who is incapable of understanding that and honestly, I hope no one else has to experience it. Either way, we aren't flushing it or throwing it in a waste basket. So our doctor is supportive.
Rachel called a neonatologist for us. Turns out that Children's in St. Louis sees five cases a year. A nephrologist here in Mountain Home said that though Polycystic is more genetically inheritable...Multicystic can be as well and that we would be foolish to not have ultrasounds done on all four of us as soon as possible to rule that out as well. He suggested that we go to Barne's in St. Louis to get a second opinion for sure as soon as possible. We, obviously, are hoping that due to the lack of amniotic fluid that it is a misdiagnosis. However, for inquiring minds, we are aware that if it is as diagnosed, it will be-minus a miracle- a grim outlook and grieving could very realistically be in our near future. I am throwing that out there for those that might assume we are not grounded in reality. I guess what it boils down to is the fact that though I LOVE science- I don't believe that is the designer behind our lives. I was not designed by genetics that was just the dispersal mechanism! Thanks mom and dad for dipsersing me! lol
Anyhow, if you want to pray for us, please pray right now that the diagnosis is wrong. We did pray for kidneys and there were kidneys there so mistakes can be made and machines don't tell us everything!
Park City Utah
2 years ago
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