Where to Begin...

As I sat down to write this blog, I could not think of a good starting point. Therefore, I guess I will just start at the beginning! I apologize that this first entry will be a long one, but it will cover everything that has happened in our world up unto this point. Although this has been an extremely difficult time, I hope that I am able to convey, and you are able to see God's goodness throughout our journey. In February, Dave and I found out that we were expecting a baby, and were thrilled! We were so excited to have a baby and couldn't wait for Evan and Carson (our nephews) to have a new baby cousin to play with! In early May, we found out we were having a boy, and the excitement grew! We decided on the name Jake Andrew. We both liked Jake, and Andrew is from the bible, meaning "of courage". We did not realize at that time how appropriate that would become. Dave and I have been seeing a perionatologist (high risk OB) throughout the pregnancy due to some previous health conditions on my part. Nothing very serious, just some things they wanted to monitor. We see them once a month and my regular doctor once a month, and have an ultrasound every time, more than the average person. The Tuesday before Memorial day, we had our 20 week scan, which is where they were checking the formation of all the body parts. The ultrasound tech was having trouble getting all of the pictures because of the way Baby Jake was lying, and we were joking that this could be the sign of a stubborn personality. All of a sudden, the tech became very quiet and went to get the doctor. The doctor came in and studied our pictures carefully and quietly, for what seemed like, an hour. He then told us that even though the pictures that he got were mediocre at best, it looked like the ventricles in Baby Jake's brain were enlarged. Neither of us really knew what that meant to his future, and we were in shock at this point. The doctor said that they don't really know what causes this, and the outcomes can be anywhere from basically nothing, to severe retardation and death. He gave us two printed materials, one from the internet, and one from a textbook detailing what the diagnosis meant. One was encouraging, and the other one was a death sentence. He asked to do an amniocentesis immediately and brought in the grief counselor to our room. We declined the amnio, so that we could better understand before we made any decisions. He wanted to see us the next week, but I had a prior engagement out of town, so we had to wait until the day after Memorial Day to have a follow up. We had no idea what to expect. The Tuesday after Memorial Day, we went in for our second scan, in hopes to get a better picture of Jake's little brain. We did end up with a better picture, but the news was devastating. The doctor explained to us time that he could clearly see the back of Baby Jake's brain and it was perfectly formed. He could also see his little face, heart, and other organs, which were also perfectly formed. However, he told us that, at this time, he did not see any mid-brain, or frontal lobe. He told us that he suspected a chromosomal disorder, and that we needed to do an amnio immediately. He told us that Baby Jake also had a great deal of pressure and swelling and would not live once he was born. We consented to the amnio, and he told us he would call within 36 hours to give us the initial results, and it would take a week for the full results to come back. He told us we might do a fetal MRI at that point, but we would have to wait and see. I honestly do not even remember the rest of the appointment. We were so heartbroken. I know they took some blood, because I remember the nurse telling me she would be praying that the test would come back good for us, as I was crying at this point. All I could think was "What does it matter if they do? It doesn't change the outcome. In a huge coincidence, or what we believe was God already showing us his goodness, we found out that our doctor, who is the head of this certain practice, is front the same small town in WV that my mom grew up in. He told us that we must be related (lol), so he was going to call in all of the favors he could, and we were only going to see him from now on. He was true to his word, and we got the initial results from the amnio the next day. All of the initial tests were clear for Trisomy 13, 18, and Downs. He wanted to schedule a fetal MRI immediately. We didn't really see why this could be so important, until we thought about it. I was nearing the last weeks in the pregnancy when they could medically terminate. In a few more weeks, they would no longer have that option. Dave happened to be working in the sedation MRI the next day, and called me that morning to tell me that they were booked and there was no way I was getting worked in that day. Not even an hour later, they called me from the doctor's office and told me to come immediately and they would work me in. They sedated Jake and I for the procedure, but it didn't really kick in until we got home, so they had to keep re-taking the pictures, as Jake was moving the entire time. Over the next few days, we tried to come to grips with the fact that we wouldn't be bringing a baby home with us. We searched the internet for similar stories, found a wonderful organization called Now I Lay Me Down To Sleep, which comes to the hospital to take beautiful pictures of your baby for free, and found out that most of the cemeteries give baby caskets and funerals free of charge. While this was the hardest time of our lives, we were feeling all of your prayers, and God's grace the entire time. That Friday night, our doctor called from his cell phone and asked us to come in first thing Monday morning to meet with him to go over the MRI results. We got to the office at 8:30 and the people at the desk asked us what we were doing there. Apparently, he forgot to mention it to them! When we told him that he called us the night before, they smiled and said "No problem". By this time they were whispering and giving us the "understanding" smile. They knew it wasn't good. Our doctor was running late, and every minute seemed to drag on forever. Finally, he arrived and called us back to his office. He told us that a doctor at the hospital had reviewed the results, as well as himself, and a specialist in reading fetal MRIs from Knoxville. (Another favor he called in for us.) He told us that he needed to explain our termination rights to us first, and then we could discuss everything else. We knew we weren't interested in that no matter what the outcome was to be, but we had to sit and listen anyway. He told us that they could insert a needle through my abdomen and into the amniotic fluid. They would then inject potassium chloride, which would stop Jake's heart, essentially giving him a massive heart attack, as soon as he ingested it. We would then be sent home, wait to go into labor, and then deliver a dead baby. As we sat there in horror, we thanked God that we had made up our mind and would never have to make that type of decision. Our doctor was obviously relieved when we said we had no intentions of ending our pregnancy. His entire body language changed, and we realized how difficult it must be for doctors to have to legally offer this outcome. We thought how horrible it must be for them to be the one to inject the poison. He smiled, and said that he had some good news for us. On the MRI, they could actually see that the mid-brain was actually intact, and they also saw fibers from the corpus collosum growing into the forebrain. This changed the entire outcome of Baby Jake's future! Because of the fluid and pressure, they were unable to see them on the ultrasound. He said that if Jake can make it to 36-37 weeks, he can do a c-section. We would have neurosurgeon and a team from the NICU waiting, and they would take him in for surgery as soon as possible. They would place a shunt in his brain to drain the fluid, and we could go from there. There is not much research on this type of diagnoses (which is officially called idiopathic aquaductal stenosis). The outcomes vary from normal development (10%) to medium to severe developmental delays. Each case is different, due to the fact that the pressure can cause damage to the brain. We didn't care! We were so happy to know that we would have any time to spend with Jake, all we could do was thank God for the opportunity to meet him, and talk to him, and kiss his little face. We want to thank you from the bottom of our hearts for your past and continued prayers for us and for Baby Jake. We know we still have a long journey ahead of us, but we are unable to express our gratitude to God and give Him all the Glory for giving Jake a second chance at life. I will continue to update everyone as we have future appointments. Fear thou not; for I am with thee: be not dismayed; for I am they God: I will strengthen thee; yea, I will uphold thee with the right hand of my righteousness. - Isaiah 41:10