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