Approaching the 24wk milestone!!

So we are approaching 24 wks (which will be Monday the 30^th).  As we have gotten closer to this milestone I have been very emotional.  This is the week that we said if we would make it this far we would start talking to the dr.’s I have mentioned before.  We would have to come up with a prenatal plan, birthing plan, and after birth plan for Jasper.  This is the week if we made it past that we would go ahead and plan a funeral for Jasper.  This is the week that we would start talking to the kids pediatricians, NICU drs, pediatric neurologist, and hospice.  This is the week we become one week closer to the end/beginning of our journey.  This is the week maybe in the back of my mind I thought we would never make it to.  This is a milestone that we kept being told we need to wait until we reach before we needed to really worry with making difficult decisions.  I am not going to lie…I thought the decisions we have already had to make were pretty difficult…and I know that the ones we have in our future will be more difficult.  I know all of you are praying for a miracle and I thank you for that.  I have been praying that whatever God’s purpose is will be revealed in time.  I want to make sure our journey is not in vain.  I still have not questioned God on WHY this has happened.  I think deep down I already know why.  If we want to blame someone…we can blame Adam and Eve for disobeying God and letting sin and disease into our world.  So when I am a little angry I blame those two!!! J  I know that if God wants to perform a miracle on Jasper he can….but I also have the raw truth of knowing that this world has suffering and really sad things happen to people and God in turn will make something good come out of it.  I think I have accepted the journey God has given me…I don’t like it…I don’t have to like it…but I have accepted it.  I also know that we will get thru this because we have hope of eternity.  We know that if Jasper does not live we will see him again one day.  It will not and does not make it hurt any less…and I know there will be days in my near future where I am not sure I am going to make it.  The reality of the night before we will go in for a c-section haunts me.  Will I even be able to breath, how will I be able to close my eyes for the night, will the anxiety of the next day give me a heart attack, will I be inconsolable, or will I have a calmness and peacefulness about me, or will I be a basket case of emotions.  I am going to guess the latter…lol.  I also realize that this could be a lot worse.  Everything we are given in this earthly world is a gift and they can be taken away at anytime.  I have always lived with a healthy fear of God and I know that everything I own and cherish could be gone in a second.  All I have is not mine to keep…and I am thankful for EVERYTHING I HAVE.   I tend to be a control freak so that concept at times can be quite the struggle.  I want to thank everyone for their continued support and prayers….especially the families who have taken on this burden with us.  A lot of the families that have supported us have children Chayse and Jude’s age.  Kids are very observant and if Jasper passes these families will have to answer really hard questions from those children.  These friends and families will be affected in many ways and will be forced to deal with really hard subjects that they did not know they would be facing a few months ago.  I just want to thank you again and I will pray that you too will have the words and knowledge to answer these tough questions!!  We are so blessed to have you in our lives!!



 



Chayse and Jim at the Daddy Daughter Dance







Dr. Dread strikes again.....

So we went to our specialist last Monday Dr. Albert aka Dr. Dread. Dr. Albert which I have renamed to Dr. Dread...just because every time we have to see him we get dreadful news. Let me say he is a nice, brilliant man who has the unfortunate job of delivering really hard news. He came off a little removed and cold to us at first but has actually started warming up to us a bit. Jim and I were on the fence if he was spiritual but during our visit he mentioned church and mass. It did not hit me until later that he had mentioned church during our visit.  I am so use to people talking about church that it did not phase me until earlier tonight when I was replaying what he said and it hit me like a ton of bricks that he mentioned seeing a little girl at church/mass. So I texted Jim to make sure I heard him right. Jim noticed it right off and was amazed that it took me this long to mention it. LOL. Sometimes my brain is working on overdrive and I have skipped ahead of the conversation and not until later when I am pondering something that I realize details that I originally missed. So our Dr. Dread does attend church.....which I am glad to hear. Regardless Dr. Dread lived up to his nickname again. Jasper's brain still looked the same. No division of the frontal lobe. So he is sticking by his initial diagnosis of Alobar HPE. He also noticed that Jasper had fluid around his heart, lungs, and tissue around the brain. This is called Fetal Hydrops. Right now it is a very small collection of fluid but if it gets larger he will make the diagnosis of Hydrops which is also lethal like the Alobar HPE. Jaspers head if you remember from 4 wks ago was measuring 3 days behind and is now measuring 3 wks behind. On a good note his little body is measuring right at 21 wks. He does not have a cleft lip but still could not tell if he will have a cleft pallet. He was looking right at us several times and he has two big eyes and appeared to look as if he was wondering what the heck we were doing. His little hands and feet looked normal. He has Jim's, Chayse, and Jude's hands. He was pointing his index finger and his thumb was extended...kind of like he was making an L. His kidneys looked good as well and were not dilated. It is just really hard to wrap your brain around that structurally he looks so sweet and normal but there is a whole slew of issues in his little body. You just want to zap him out of there and hold and comfort him even though he appears to be in zero pain what so ever. He also kicks and moves and spins like every other baby but in this case all that movement means nothing. Every time I hear the word lethal come out of Dr. Dread's mouth it dances around the room waiting for my brain to absorb it. Words you hear everyday seem to take on a different meaning in this situation and sometimes it feels like I am in a foreign country and need a translator. LETHAL...what does Lethal mean again??? I am here to have a baby....why is lethal coming up again??? So the most simple words that we have heard all our lives take on a different symbol and seem to feel foreign and unreal. It was the same way when i heard incompatible with life.....it just stays suspended in the air waiting for someone to absorb it because we all know once the words leave our mouths there is no taking them back...they are out there forever good or bad just waiting for someone to take them in. Once we get to 24 wks we will see a pediatric neurologist to do an MRI of Jasper's brain. This will not change anything but just confirm what we already know. We will also make plans to talk to the NICU dr about a birth plan. Talk to hospice for a prenatal plan and after birth plan. As of right now we want to give Jasper comfort care. We will also in the near future talk to our funeral home director in our home town to talk about the possibility of arrangements. We have talked about places we would lay Jasper to rest in the event he does only get to grasp life for a few minutes. We will also meet with Chayse's and Jude's pediatricians to make sure we are taking the right path on helping them deal with this situation. The kids still seem to be doing ok. We are both watching them closely. They are still very optimistic but both say that if Jasper cant run and play on earth that they would want him to live with God so he can run and play in Heaven. Chayse said she just really wants Jasper to come home with us and I too want that. I just cant imagine coming home without him. I also cant imagine watching my husbands heart break into a million pieces right in front of me and I am sure the same for him. How do you heal a families broken heart??? I am still really stuck on that one.......time and prayer??? I can only pray that we have a moment of God's grace.....


We did have a great Easter and spent some great quality time with family. We caught up with all our favorite eateries in our hometown and had a fish fry at Jim's Uncles. The kids got to ride four wheelers, fish, hunt eggs, and everything you can imagine. Jim and I were also able to visit with Pastor Tim who gave us some guidance and prayed with us. We all dressed up in our Sunday best to celebrate Jesus' resurrection as Jude would say his coming alive again...and as pastor Tim would put it the "Super Bowl for all Christians" We followed that up with a huge southern lunch and then rolled ourselves to the car to make the 3 hour drive back home.

Next steps
Obgyn visit May 3rd
Specialist visit May 10th
visit with Pediatric Neurologist
visit with NICU dr

We just keep getting pooped on!!!!!

My ob appointment was fine yesterday.  Measuring exactly where I should be and the dr did not say anything about my weight gain….(which is always good)… I did not mention the fact that I have been eating a kid’s sonic cheeseburger for the last 3 days in a row for breakfast (yes you read it right breakfast)…and that Jude my 4 year old who is honest to a fault had made several comments about my growing backside.   Jude who was laid up in my bed last Friday morning at 7am eating chocolate covered peanuts that he had found in our pantry that needs to be cleaned out…was watching me get ready for work in our bathroom standing there in my maternity pants and I heard a raspy loud voice say…. “oh my…..your butt looks HUGE in those” where I swiftly replied that if he keeps laying in bed eating chocolate covered peanuts his butt will look just like mine.  Glad we Driskells are thick skinned.  Lol  So back to always getting pooped on.  With everything going on with Jasper it does feel like we have gotten “pooped on” quite a bit here lately but I thought I would take things to a lighter note.  So this morning Jim opens the front door and he yells “Sabrina you have got to come see this.”  So I just can’t imagine what is going on….I yell back “what is it”…He insist that I just have to come immediately.  I have mentioned that thru this whole journey we have just been surrounded by the most carrying and supportive friends.  Well a few weeks ago we return home after church and yellow flowers greeted us in our freshly groomed flower beds which were running a little rampid with weeds and grass when we had left that morning.  Two of our sweet neighbors had come over to our house while we were at church and planted them to brighten our day.  They were beautiful and just the thoughtfulness and generousity made me weep.   So thanks for making us feel so special.  Anyway I was standing in my bathroom thinking I just don’t know what else someone could do to top those awesome flowers???  So puzzled I ran to the front door to see what was going on and there I found Jim, Jude, and Chayse standing on the sidewalk looking down.  So what to my wondering eyes did appear…… but a big pile of horse poop…in the middle of our yard.  So as we all stand there confused wondering how and the heck this happened…Jude spoke up and said “Dad….I am not cleaning that up”.  He usually helps Jim with our backyard clean up from our two boxers and I guess this is where he draws the line.  So we still are not quite sure how the poop got there...maybe another neighbor thought they would help with fertilizer??? but like I have said before we have tried to find laughter throughout this whole ordeal and by gosh if we don’t find it ourselves apparently laughter will find us…in the form of a big pile of horse poo.  Have a great Easter!! 

Update 04012012

Not too much to update. We are now 20 weeks along...half way to whatever shall await us at the end of this journey and beginning of another one.  For those of you who are not quite sure what Jasper Wyatt has been diagnosed with....we are dealing with a monosomy 13 Q (deletion on the long arm of the 13th chromosome) and this has caused Alobar HPE (the most severe case of the front lobe of the brain not developing or dividing). Jim and I saw a geneticist a couple of weeks ago. She could not tell us anything that I had not already researched. We both felt it was a waste of 475.00. We tend to get reverse discrimination by choosing not to terminate the pregnancy in the world of the medical community. She went as far as to saying that legally we had up until 20 weeks but we "technically" have up until 24 weeks and she could find us a clinic. We did tell her we would love to be available to chat with other parents who are going thru this challenging road and hopefully we could help them out. We just get the same statistics over and over. Yes...we know that Jasper only has 3% chance of making it to term, and yes we also know that we have a better chance of winning the lottery than him surviving more than a few min, hours, days after birth. We are not delusional, we are well aware of the possible outcomes at this point and they all suck!!. If Jasper is going to have zero quality of life and be a vegetable we would rather God take him in his first moments of life....but we are leaving that up to God. If Jasper does live and God puts his care into our hands we will do the best we can do for him and our family. We both are well aware of the challenges we will face either way. We are aware of the challenges but when that time gets here it will be another story dealing with them. We also don't judge anyone for terminating their pregnancy because you want the best for your child and your family...not to mention how fearful you are...this road we have chosen is scary and hard... so those parents that come to that gut wrenching decision do it out of their hearts and love for their unborn child and family. In my mind I still think about that decision...we would already be moving on with our lives...as my growing belly becomes the scarlet letter of conversation of when we are due, what we are having, how exciting we must be, how Aug will be here before I know it...and our children would not be begging God for a miracle instead of facing the fact they that will lose a little brother that they will never get to know. I would not have to explain that if God does not perform a miracle that he will get us thru this and we have to be an example to others that even though something horrible has happened to our family we still love and trust God. The kids are just really young to learn this lesson. I mean it is still hard for me to swallow that concept. As Jude would put it...."I thought having a baby was suppose to be happy and healthy." We still try to get thru this with some laughter. When the mega million jackpot was at 645M..and the statistics for winning were 1 and 178,000,000, Jim and I looked at each other and said WE GOT THIS...checks in the bank. Those odds are nothing...lol Like I have said before we are so busy with the kids that life has to go on. We had a fun filled day at the soccer and baseball fields this weekend. It just seems to be those weird moments where the magnitude of what is going on in our lives hits me and you cant even breath....and I will tend to ask Jim...do we "Got This"!!!!! and the answer is always YES!!! We would not have even made it this far without the love, support, and countless prayers. They always say you find out who your friends are when you are faced with a situation like this and God has not disappointed...we are surrounded with a magnitude of wonderful people who have taught us how to be better folks....THANKS TO EVERYONE WHO CONTINUES TO PRAY FOR OUR LITTLE FAMILY.


Next Appts:  April 4th OBGYN
                     April 9th specialist