28 wks

We met with the NICU team two Wednesday's ago.  It was an emotional appointment.  We met with Dr. Santiago the head of the NICU.  A L&D nurse, NICU nurse, chaplain, and case worker.  They were all so welcoming.  They walked us thru several scenarios that we could face when Jasper is born.  They just wanted to make sure we were all on the same page with our wishes.  They also stressed to us over and over that whatever we want during the whole journey they will make sure it happens…all we have to do is ask.  Dr. Santiago prepared us for the stages of death and told us that their staff would be there with us the entire time.  We have chosen comfort care for Jasper at this moment (we can always change our minds once he gets here and is evaluated).  Dr. Santiago said their advice to us would have also been comfort care.  With Jasper having fetal hydrops he will be severely swollen and it is invasive to even get an IV in him.  We don’t want to cause him any more pain or suffering than he will already be going thru, so at this time that is our plan (our plan….we will still have to see what God’s plan is for our little man).  They will try to accommodate a special place for our family to gather since this is not a traditional delivery.  Our case worker will also do a memory box for us.  She said that they will keep it up to a year if we decide not to take it home with us at that time.  They will also have a photographer with a service called Now I Lay Me Down to Sleep to come in and take some family photos.  So needless to say it was an emotional appointment but we could not ask for more caring Dr.’s, nurses, and hospital staff to have around us.  On Thursday we were offered the opportunity to have a 3D sono (thanks to some friends of ours…).  We decided to go ahead with it and take the kids along because this could be their only chance to see and spend some time with Jasper.  Jim and I both had no idea what Jasper would look like and we figured that the kids would not know the difference anyways.  With that being said…it was devastating.  He was so swollen you could barely make out his facial features.  On the other hand the kids were thrilled to see him because they had no idea what he was suppose to look like and just thought it was a lot of fun.  Jim and I were glad we had the sono because you would have had to scrape us off the delivery room floor if we were not prepared.  In my mind I knew he would be swollen but just not prepared for that.  I pretty much spent most of the next day and the weekend in bed….but today is a new day and we still have fight left in us and are marching on.  The sono did provide us some comic relief.  Jasper was very proud of his manhood and Jude thought is was the funniest thing he had ever seen.  Then Jude said as shocked as he could be “IS HE NAKED IN THERE???”  to which Jim and I explained that …Yes he is, you are not born with clothes on….did you think mommy ran to the Gap and dressed him in my tummy…lol    Chayse always frames the sono pics and puts them in her room.  When I start getting depressed I count my blessings and they are many….we still have so much to be thankful for…sometimes I just need reminding.  Thanks again for all the love, prayers, and support!! 

25 Wks and Counting

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 13^th 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 13^th chromosome on the 32^nd 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)

Jasper Wyatt Driskell @ 24wks
He was rubbing his eyes