Sorry I have not updated in awhile. So we ended up seeing our specialist Dr. Albert last Monday. We were originally going to see him this Thursday. So Jasper has now unfortunately been officially diagnosed with fetal hydrops. L His head is now 5 wks behind so he has also now been officially diagnosed with microcephaly. So we are looking at really 4 strikes here when you add on the Alobar HPE and the deletion on the 13th chromosome. For anyone who researches our diagnosis I just want to mention that most of everything Jasper has can be associated and caused by other things (virus’s, immune/nonimmune, blood types)…the list can go on and on. We know that the cause of everything Jasper has is associated with a monosomy on the 13th chromosome on the 32nd band which is normally a fluke or Jim and I can be carriers. In some cases of the fetal hydrops the babies that have this can link the cause to a virus and can sometimes be treated in the womb…that is unfortunately not the case with Jasper. The fetal hydrops can be seen largely around his heart and lungs. His lungs are developing behind because they have no room to grow. Both our OB-Dr. Boyd and specialist-Dr. Albert thinks Jaspers little heart will give out before he makes it to his due date. Both Boyd and Albert also say that babies can always surprise you so we don’t know for sure but Jim and I are preparing for both. After all Jasper is a Driskell which means he is a fighter and tough little guy. If he does make it to birth he will probably only live a short time because his little body cant process all the fluid and his lungs will not allow him to breath and his heart will also give out from working so hard. The fluid will just keep reappearing. So we have decided not to see the pediatric neurologist unless our NICU Dr. would like us to. We just need a little break from Dr.s right now. We visited with the kids pediatrician Friday, Dr. Han and she was very supportive and has helped facilitate the meeting with the NICU DR. and any other Dr. we wish or need to see. So that has taken a little bit of the stress off of Jim and myself. I have mentioned before that the medical community is not as supportive on our decision to not terminate but I must say that was mainly the geneticist. Everyone else is the most compassionate, supportive, Dr.s we could ask for. They never rush us during our appointments and go out of their way to make sure we are handling everything ok. So now our next step is to just wait it out. We are supposed to go to Dr. Boyd if we do not feel movement for a couple of days. We saw her Thursday and Jaspers heart rate was already down to 129 where it had been at 145-155 every appointment thus far. If we go in and there is no heart beat she will do a c-section right away. We will immediately be sent over to labor and delivery and prepped. We should be meeting with the NICU -Dr. Santiago this week and then we will go back to Dr. Boyd and Dr. Albert at the end of May. Jim and I seem to be really tired emotionally, physically, mentally, and spiritually. So please pray that we have endurance and stamina in all aspects. I try to remind myself that most people in this situation don’t find out until after 20wks or at birth and we have already been dealing with this since Jasper was 11wks and 4 days. So when most people have some sort of resolution or closure by now…..we still have a ways to go. We know God has gotten us this far and he will carry us thru….we just get drained sometimes. Thanks again for all the support and prayers. We truly are touched by so many people reaching out to us and praying for us.
Next Step
Meet with NICU Dr. this week
May 29th - Dr. Albert (Specialist)
May 31st - Dr. Boyd (OB)
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| Jasper Wyatt Driskell @ 24wks He was rubbing his eyes |
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