Jasper's arrival and departure

Where do I begin.....July 4th I knew Jasper had not been moving near as much as he was just a couple of days ago. On Thursday he did not move at all. I came home from work and told Jim that if i did not feel him move throughout the night we would need to call Dr. Boyd first thing in the morning. So after a sleepless night of drinking juice and trying to get a response from Jasper we decided to call Dr. Boyd ASAP. I forgot that Dr. Boyd was off for a few days because of the 4th of July so I left a message on her answering service who informed me that she was not on call but would have the on call doctor call ASAP. Well low and behold Dr. Boyd called herself. She had told her answering service that if I should call for any reason that they were to call her immediately. So I got a quick call back from Dr. Boyd who told me her office was closed and to go to Dr. Albert our specialist or L&D and then to have the hospital or Albert call her back and let her know what was going on. So I called Dr. Albert and he of course welcomed us right away. We went into his office and he did a sono and immediately we saw Jasper had a heart beat which gave me comfort that he was still holding on. During the sono Jasper did not move at all and Dr. Albert did several test on his heart beat. He could not get response from him either. He thought Jasper was not going to make it thru the weekend and that we have come all this way that if we wanted to spend anytime with him that we needed to go ahead and deliver. The fetal hydrops had literally taken over his little body in the last couple of weeks...not to mention I was full of amniotic fluid. Jim and I wanted to hold and comfort him as he departed from this world so off to Labor and Delivery we went which was around 10am. So we began to call all the family and made arrangements for the kids to be picked up from school and brought to the hospital. We also called our good friend Jeannie who was going to take pics for us in the delivery room. Everything worked out just as it should. The earliest we could get in for a csection was 3 o clock which worked out perfectly in getting all our family to Plano for the delivery. It just gave us a little time to think and to prepare everyone. Once Jim knew I was in great hands with the staff at the hospital he headed home to grab clothes and let the kids know that later a family friend would be picking them up and bringing them to the hospital for Jasper's delivery. So while Jim was away I got prepped for the upcoming surgery. I was actually fairly calm at this point...I just knew in my heart that everything would work out the way it should and God would take care of us as he had up until this point. Around 2 everyone in our family started arriving. They gave us a huge suite so all our family could wait comfortably. Once everyone got there Dr. Boyd came in to chat with us for a bit. Then the chaplain came in and we had a family prayer. Around 3:20 pm I then had to make the long walk to the OR with my nurse to get further prepped while Jim and Jeannie got suited up for the delivery. I held it together pretty well until I had to make that long walk....the walk I have thought about for MONTHS....it was here right in front of me. No going back just one foot in front of the other...which I have practiced over and over as we have walked this journey with Jasper. I was nervous and scared and started to throw up. My nerves were rattled and when you don't have any more options you tend to panic a little bit. I had to get an epidural which seemed a breeze compared to what we were about to go thru. I just kept praying and praying that God would guide us thru this moment and give us a few minutes with Jasper. Once they got me prepped I was joined by Jim. Both of us held it together the best we could...we wanted to be brave for our little guy who we have so desperately wanted to meet. Finally the time had come when they pulled Jasper out he was startled but never cried. The doctors gave him to the nurse who quickly checked for a heart beat which she shook her head there was none. She quickly wrapped him in a blanket and handed him to Jim who brought him to me. We held him together...and he flinched. So we told the nurse and she ran over and he had a faint heart beat. I think he just needed to hear our voices and feel our touch like we needed to feel him. He then stayed with us for about 15 min. He was so sweet, tough, and a fighter. We just talked to him and told him everything was going to be fine and how brave he was to make this journey to us. We kissed and held him until he passed. He was beautiful and had a beautiful soul that we will never forget. Jim then took Jasper to meet the rest of our waiting family. It was difficult for Jim to walk into the room and tell everyone that Jasper had flown away to be with God...but he did. He was soooo brave and gentle. I joined everyone a few minutes later. The kids adored him and inspected every inch of his little body. Everyone was very calm and it was just very peaceful. Then we kicked everyone out so Jim and I could spend some time with him by ourselves. The hardest part was having to let them come and get Jasper and take him to the morgue. That was when we somewhat lost it. You know in your mind that it is just his body but it is also your child and you want to be with him at all times. It is hard to make that leap when his body is so tangible right in front of you and his soul is so intangible in many ways. So Jim waited with him while they came up to get him and they took me to my hospital room. I honestly did not think I could watch them take him away. I knew in my heart that I would want more time with him and any time I had on this earth would never be enough. The whole experience was the most spiritual, beautiful, saddest moment I have ever witnessed. Everything happened just as it should. We have a heartache that will not stop hurting and we will learn to live with it. God will take care of us as he has. It was pretty hard at the hospital and watching my body do all the things it was supposed to after having a baby...just no baby. it was hard to wrap my mind around what all had happened and how fast it happened. I had a wonderful staff at the hospital and I will write about that soon. Once I get the pictures uploaded from his service I will post those as well. Until then Jim and I made a slideshow we showed at Jasper's service. We sat up the Monday before his service and put it together from the pictures Jeannie took. We are doing ok....just trying to cope with an emptiness that will never be filled. I guess we will learn to live with it. I dont think one day will ever go by where I dont imagine what he would be doing, be like, or look like.  My sweet Jasper. 

Jasper's arrangements

First I want to thank everyone for all the love, prayers, and support throughout our journey to meet Jasper.  We have decided to have a private service to celebrate Jasper's life with just our immediate family.  I am still healing from a csection and believe I am too weak to have a full service.  Please know that we are well aware of how much everyone loves and cares for our family and you have proven that with every prayer and encouraging words you have given us.  So thank you from the bottom of our hearts.   I know we have a difficult road ahead of us so please keep praying for our family!!! As soon as I get on my feet I will make sure I fill you in on the delivery and funeral!!

Below are some pics from the  delivery

With love
Jim, Sabrina, Chayse, and Jude

Jasper Wyatt Driskell

Jasper Wyatt Driskell Born 07/06/2012 3:46pm 6lbs 16 inches long Expired 07/06/2012. 4:06pm Thanks for all the love, prayers, and support. We are all holding up ok!! I will post pics and give more details on our little guys arrival and departure later

Family Pics

Our sweet neighbor who is a photographer took us out and took some pictures of the family and my growing belly.  She and her sweet family have been an inspiration to us thru this whole journey.  They have been a mentor to Jim and me.  They have always made themselves available night or day to us when we just need to chat or need a welcomed distraction.  So thank you Jeannie…the pictures will be treasured forever and ever.  She is also going to accompany us in the delivery to capture pictures of Jasper if it works out ok.  Trying to get all the Driskell’s looking in the same direction at the same time had to be a challenge that I am not sure I would have been up for…lol  When we started out she took us to a tire shop and right beside the tire shop was a huge drainage ditch that was filled with water and mud.  Jim says sewage but I choose to believe water and mud and you will see why in a second.  So the first thing Jude does is run and stand on top of the silver drainage pipe staring eagerly down at the new adventure that awaits him.  We all yell to get back and he assures us that there is something down there he needs to get….so as I scowl at him and put on my serious face to tell him to “NOT EVEN THINK ABOUT IT” he slowly backs away from the ditch.  Might I add he is wearing a solid white tank top (which I bought a 6 pack of and brought the other 5 with us…just in case).  So we take a couple of shots and he is just itching to go back to that drainage ditch and ask Jeannie if we were done.  I explained that we have not really started yet.  So I get an AWHHH Man!!  So Jeannie comes over to pose Jim and I for a photo and for some reason I look over at that drainage ditch or maybe Chayse yelled “Look at Jude”  regardless we look over (Jude has been out of my reach for a matter of seconds…but he is quick) and Jude has jumped in the ditch and mud has engulfed his blue converse tennis shoes.  He is frozen and looking up at all of us because I believe he was not expecting to sink so fast into the gray mud.  So we all yell to him “DO NOT MOVE” while Jeannie snaps pictures of him in the mud.  Jeannie has 3 boys…and her youngest is a lot like Jude so of course she gets a huge kick out of this.  So after Jim fishes him out of the ditch trying to not get any mud on his jeans and tank, we all kick our shoes off for shoeless pictures…for the rest of the shoot.  After the tire shop she took us to the most beautiful sunflower field.  I have honestly never seen anything more beautiful.  The kids had a great time running as far as they could run. 

Thanks Jeannie!!!  We love you and your sweet family!!

http://www.jeannienaumannphotography.com/

32 wks and better news

We met with Dr. Albert our specialist this morning and to me we got some encouraging news this time.  I had mentioned before that we were really concerned about all the extra amniotic fluid I was taking on.  It carries some risk to mine and Jasper's health.  Dr. Albert assured us that I am still at the moderate range.  He said he has seen women that have carried more.  He said it looks like my uterus and placenta are doing great and that my body is handling the stress of the extra fluid really well.  So to us that is GREAT news.  We will still monitor it as we go forward and if it gets out of control we can always drain a couple of liters off but he would rather not do this…but can.  He also is hoping it will taper off here in the next few weeks.  Now an update on our little guy…...  His head is now 10 wks behind…still has the same fluid around his head, heart, and lungs.  I had mentioned in a previous post that at the last appointment Dr. Albert was really concerned with the difficulty of the delivery because Jasper was starting to carry fluid under his skin….well good news is that most of that fluid is gone and is very mild.  So that is better news.  The best news is that he thinks Jasper will have a live birth and we will get to spend a few minutes or hours with him….so we are ecstatic about this.  No one thought he would make it this far and we would deliver a stillbirth.  So to think we may actually get to spend some time with him is wonderful.  To put the icing on the cake he also thinks since Jasper will not be as swollen that he will look pretty normal in his face and body (he will still have a really small crown) but other than that look like a "normal baby".  So now we are hoping Chayse and Jude will get to meet their little brother as well.  So we are hopeful and we know that things change really quickly but all we can go by is today and right now…and that is how we will carry this news.  This is great and a blessing from God.  So we are happy campers this weekend!!!   He is still moving and kicking and acting like any other sweet little baby!!  He is a fighter and so are we!! J  So keep up the prayers….and thanks to everyone for embarking on this journey with us. 

Next step

Dr. Boyd (OBGYN) June 28^th

Dr. Albert (specialist) July 19^th

Delivery Aug 13^th

31 wks

Not much has changed since my last update.  I started seeing my OB every two wks so we had an appointment last Thursday.  Jasper’s heart rate was steady at 146…I was glad to see it was up a little.  It had been running in the 120’s.  I can only believe that it is still beating because of the grace of God.  If you saw all the fluid surrounding it and his lungs…you would be amazed as well.  That is a miracle to me in itself.  He’s a little fighter.  I don’t think the doctors thought he would make it this long but they too will say that there is always another factor GOD.  His movements are strong and often so it is a nice comfort to me as we are getting closer to the date of his arrival.  I am getting really anxious and emotional.  I think as time wines down I will become an emotional mess.  I am still gaining a ton of amniotic fluid.  I was 30 calendar wks last week but measuring 36 wks.  I am gaining a month in measurement every 2 calendar wks.  At this rate I will be measuring 54 wks prego at our Csection date of Aug 13^th.  My OB said there is not a lot she can do about the fluid…but at this point I am feeling really good.  My blood pressure is great and I feel really well.  I did not ask a ton of questions about all the extra fluid because it kind of depressed me and I really did not want to hear the answer at that point.  Plus Jim was not with me at the appointment and he is usually the question asker. Lol   Sometimes I think ignorance is bliss.  I was having an emotional week and I really did not want to deal with anything else or think about all that amniotic fluid.  So when we go to our specialist this Friday we will dive a little deeper into risk and complications.  We had a great father’s day.  We traveled to Austin and stayed the weekend at Barton Springs Resort for father’s day.  Jim passed his CPA exam so he had his swearing in ceremony on Saturday morning.  The weather was wonderful and the kids really enjoyed hanging with their cousins and grandparents.  Please continue to pray for Jasper’s health and that the amniotic fluid I am carrying will taper off.  Thanks again for all the love, prayers, and support!!!! 

Next step

Friday June 22 Dr. Albert (specialist)

Thursday June 28th Dr. Boyd (OBGYN)

Monday August 13th (delivery)

Continued prayers

29th wk update

So last week we saw our specialist Dr. Albert on Tuesday and our OB Dr. Boyd on Thursday.  Not too much has changed with Jasper.  His head is now measuring 7 wks behind, he is starting to take on more fluid under his skin, and we can confirm that he has a hole in his left ventricle.  Dr. Albert warned us that with Jasper’s condition it would be a difficult delivery even with a c-section.  He explained to us that with Jasper having fetal hydrops his skin would be bloated and hard as a rock (kind of like my stomach is while I am pregnant).  He said that most babies would bend and move and be flexible but Jasper will be tight and nonflexible.  He also explained that I am now carrying too much amniotic fluid which goes hand and hand with a chromosome abnormality and fetal hydrops.  I was 28 wks last week and when we went to Dr. Boyd she measured me and I am measuring 32 weeks.  So in a month I went from measuring 24wks to 32wks.  Now the plan is to keep close tabs on Jaspers weight (bc he can triple his body weight with fluid and the larger he gets the more risky and difficult the delivery will be).  We are also monitoring my amniotic fluid/growth because if I keep growing at this rate it will cause more risk to my health and puts stress on my uterus and can cause complications with the preterm labor and the delivery.  We are still in good shape as of now but as we get farther along we will kind of play it by ear on when we should deliver.  The family seems to be doing well.  We are in pretty good spirits and taking everything in stride.  Chayse and Jude are doing great.  We finished up school and just about to wrap up our spring sports.  Chayse’s softball team went undefeated 10-0 this season.  They are now in the post season tournament.  Jude had a blast with tball and ready to play in the fall. I do have a funny story to tell.  Jude was getting picked on a little bit at school by an older child and I told Chayse that she needed to take up for her brother…and she looked at me and said…I am not about to ruin my clean record.  This comment coming from a 7 year old in summer care.  She explained that she had a pink dot which was the highest dot you could attain.  I explained to her that she was not trying to get into Harvard just yet and she could stand to take a little slide on her perfect record to help her brother out.  Jude is our little firecracker and his record stays a little tarnished…lol  Jim and I had a flash forward to when they both attend college and Jude possibly ends up in the slammer one night (God help us) and Chayse refusing to go down to bail him out because of it tarnishing her record.  Stinker!!

We are now waiting on God to reveal his plan for Jasper and our family.  Patience is not one of mine or Jim’s strong points which I have mentioned before.  We both understand that we are not in charge in this situation and honestly I am kind of glad we are not.  We made funeral arrangements for Jasper over memorial weekend and found a place to lay him to rest.  We also picked out a headstone but still trying to figure out what to put on it.  We have gotten several beautiful gifts with Jaspers name monogrammed on them and they always make me weep so I cant imagine what we will do when we see it in stone.  Jim and I are from the same small town and the funeral home owners are great family friends that we have grown up with all our lives….so if you could call making arrangements for your child’s funeral easy…they made it easy on us.  Everything went really well.  We are so blessed to be surrounded by such wonderful folks.  Thanks for the prayers and uplifting messages.  I think we are doing quite well considering our circumstances and I know that has to be because we have such a great loving support system. 

So for now we are just waiting not very patiently but waiting!!

Next Step

Dr. Boyd Thursday June 14^th

Dr. Albert Friday June 22^nd

Get out of bed and put one foot in front of the other and breathe in and out.

Jasper Wyatt Driskell Our Brave Little Soul

I came across this essay written by John Alessi and had to share.

The Brave Little Soul

John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially

enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was

sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad

things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the

love in people's hearts." The little soul was confused. "What do you mean," he asked." God replied, "Have

you not noticed the goodness and love that is the offspring of that suffering? Look at how people come

together, drop their differences and show their love and compassion for those who suffer. All their other

motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks

the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone

with endless love in their heart, but unfortunately most people keep it locked up and hardly share it

with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering

soul unlocks that love. I tell you this—it is the greatest miracle of all. Many souls have bravely chosen

to go into the world and suffer—to unlock this love—to create this miracle—for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering,

bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the

world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though

you are very brave you will not be able to do this alone. I have known since the beginning of time that you

would ask for this and so I have carefully selected many souls to care for you on your journey. Those

souls will help you create your miracle; however they will also share in your suffering. Two of these souls

are most special and will care for you, help you and suffer along with you, far beyond the others. They

have already chosen a name for you."

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little

soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my

strength. And if the time should come when you feel that you have suffered enough, just say the word,

think the thought, and I will bring you home."

Thus at that moment the brave little soul was born into the world, and through his suffering and God's

strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences

and came together to show their love. Priorities became properly aligned. People gave from their

hearts. Those that were always too busy found time. Many began new spiritual journeys —some regained

lost faith— many came back to God. Parents hugged their children tighter. Friends and family grew closer.

Old friends got together and new friendships were made. Distant family reunited, and every family

spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good.

The world was a better place. The miracle had happened. God was pleased.

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

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