This is the story of our little guy Brayden Ryder. We found out he might be born with Campomelic dysplasia and may not survive for more than 5 minutes to a few hours. We are finishing out our last 3 months of pregnancy HOPING for a miracle but planning for brayden's passing.
Well seen the OBGYN, fetal specialist, and prenatal hospice today and it didnt go so well. Brayden's arms and legs are 5 weeks off on growth and his feet are bowed. His chest cavity is small so there is a very low chance that he will survive at all .. he will most likely have to be put on life support when he is born and if so we are choosing to let it in gods hands and let things happen how they are suppose to and spend as much time with brayden while we can. Its a very hard and sad thing to deal with but we are taking it one day at a time. The Only positive things we heard today is that Brayden is now 3 pounds and for future if chris and i want to have children this most likely would never happen to us again. We are preparing for the worst but we will always love brayden and he will always be our first child. Maybe he will come out and things will turn out better than we are planning for, but i dont put my hopes up to much for that considering the way things are looking now. I still will be seeing the obgyn every 2 weeks to see our little guy and dr barsoom the fetal specialist once a month.. we meet with the prenatal hospice lady nancy in 4 weeks with dr barsoom to talk about preparing for brayden's death more when chris can go with (today he had to work) . Here are pictures of brayden from today 29 weeks 5 days. hes got such a cute pouty face..
Well this last week on thursday i had a regular OB checkup and was suppose to get the digestional diabetes test done but had gotten the flu so couldnt do it. I also was suppose to meet with our Hospice nurse (nancy) that day for the first meeting but was to sick to go so now it is rescheduled with the appointments on December 15th. Brayden is doing good as of now his growth is still off but he is still a little active bugger and his heart is good :) here is our side view picture that we got that day. Ill keep this updated when we go to the next doctor appointments with Dr Barsoom, Regular OB, and the Hospice nurse on the 15th.
We had gotten a call from dr barsooms nurse between the times of finding out ALL of the results and found out that our chromosome testing came back normal (which is encouraging) and that we are having a baby boy .. Chris and I have decided that his name is going to be Brayden Ryder. Also now we have the rest of our results finally as of November 17 2011 the micro testing that does 40,000 tests on our baby came back NORMAL. We seen Dr Barsoom on that day (november 17) and still braydens bottom half of his legs aren't growing normally they are far behind but his upper part of his legs is close to the normal that its suppose to be. Chris and I asked questions on to how he knows that our little brayden has campomelic dysplasia and he said that its just "picture perfect" to what he has seen before in the past so really there is no proof that he for sure has it and we wont know until i deliver. Chris and I hope that maybe our little brayden will come out fine and this is just a mistake but we are preparing for the worst. I see the hospice nurse and the neonatologist here on December 1st also my regular OBGYN so i will update again on that once its here. Dr Barsoom says that there is some extra fluid on Braydens kidney and that he may have a little extra fluid on his brain but cant tell for sure because of the way he is positioned. Other than that his heart is great and he is doing fine besides his poor little leggies :( . Everything is really just up in the air until i have the little guy and if there is problems chris and i just also hope that its something minor or able to be fixed since in this day almost anything is possible !! We arent going to do a baby shower for Brayden until after i deliver because we dont want to have to deal with having ALL of that stuff if we arent able to take our little guy home. So as of right now we are just getting stuff for the diaper bag to take to the hospital and are borrowing a carseat from a close friend that HOPEFULLY we get to bring him home in. Also i am writing all of this blog mainly in one day because i had just decided to start writing this for brayden. I will start to keep it updated from now on after every doctor appointment so it wont be all smushed up and sort of jumbled like this beginning. but anyways there are miracles i have been reading so many of them lately.
and here are our last pictures from last appointment 25 weeks 5 days he looks just like his daddy already !!
2 days later after i seen Dr Ortiz i got scheduled to see the fetal specalist (october 10,2011) Dr. Barsoom. Chris had taken the day off for us to go down to the doctor and find out what was going on just having hope that we would get news his legs could be fixed after he was born. We got to the office, got registered and sat there and waited to get called back filled with so many different emotions.. sad,lost,stressed,worried, and hopeful. Finally we got called in and the nurse did a full ultrasound and we got to see our baby on a 52 inch screen tv. She measured out ALL of the baby's bones and than we got to see a 3d picture of our baby. We liked that we were getting to see her/his beautiful face on the big screen but we will still worried/scared to hear what doc was going to give for us for information on his legs. After she had gotten done with measuring the baby she told us it would be just a few minutes for the doctor to come in. When he came in he started to tell us news that was SO unexpected.. that his leg bones were not only bent but his arms and legs were excessively short and that in a case like this he thinks that our baby has campomelic dysplasia which is a form of skeletal dysplasia. Chris and I just sat there at loss of words sad and heartbroken. As we sat there and listened the doctor told us that he was going to do an ambio santicas on me so that we could get exact results of what was wrong with our baby as to if it was a chromosonal deal and if it was skeletal dysplasia. He told us we could terminate the pregnancy or carry it to term and asked if we had any questions. Chris and I were still at loss of words and i was to sad to even talk and had been bawling for a while now but chris's mom started asking questions "well what are the chances of the baby living if they do carry it to full term?" "what is the quality of the childs life going to be" ect. and dr barsoom began answering telling us that if the baby lives outside of the womb and has Campomelic Dysplasia they only have a 5 percent chance of living and if the child does survive will have breathing trouble the rest of his/her life. I told him that we just needed to go home and would have answers for him after we had gotten the amnio results back. He had began doing the amnio to get a more exact diagnosis of what was going on with our child. I began wondering IF our baby was going to have physicical disabilities and if it was even right to bring he/she into this harsh world if he/she was going to have so many problems. After we were done with the amnio the doctor told us that he would give us a call in a few weeks with our results of the diagnosis and we could make our decisions. Chris and I than left the hospital and came home. I was clearly a mess by this time bawling my eyes out. We talked about it on the way home as to our decision but we just didnt have an answer to what we were going to do .. at first we thought about terminating the pregnancy before the 24 weeks IF we did get results that he had campomelic dysplasia because we didnt want our child suffering in this harsh world if he didnt get to have a good quality of life. I had so many mixed emotions at the time.. Felt guilty as to terminating the pregnancy and wondering if it wasnt right ect. We talked about how would we ever be able to raise a disabled child when we dont have the income for it ?? all kinds of different things but we just had to try not to stress and hope for the best while waiting for the results.
It seemed like this day would never come, and here it was (September 29, 2011) !! The day we would find out if we were having a little boy or girl. Chris, My Mom, and I had a shopping trip planned that day after we found out the gender of our child. That day i was seeing my doctors PA because she had an emergency delivery but we figured that wouldnt be a big deal we would still figure out the gender of our baby. Chris and I started becoming more and more excited as the PA (vanessa) starts doing the ultrasound !! Vanessa said everything had looked good on the baby but when she got to the legs they were crossed indian style so she couldnt see between to find out the gender. We were disappointed and she started giggling my tummy trying to get him to move around but unfortunately it never happened. She told us to come in the next week and they will take another peak to see if he/she has moved. So, the next week comes around and i go down to the doctor with one of family friends to get a peak figuring for sure that he/she has moved by than and we would find out the gender of the baby. Well my main doctor was there that day just was busy and i didnt technically have an appointment so Vanessa (my PA) took a peak to find out if we could figure out the sex. Unfortunately, the baby was still in the same position but she thought it was a girl. She Said she would be right back she was going to ask Dr Ortiz what she had thought. After of waiting a few minutes Dr Ortiz comes in and starts looking at the baby and everything seems to look fine until she got to the legs. She said that everything was measuring right but he/she legs didnt look like they were forming correctly and she was going to make an appointment for me to see a fetal specalist that had better equipment and could find out exactly what was wrong. My heart dropped, i couldnt believe it .. all i could say was "are you serious". Dr Ortiz said that the baby was healthy and that it could be a minor problem that could be fixed easily after he was born. I was upset, called my boyfriend to tell him what was going on and just lost it and started bawling thinking what if our child doesnt live? ect. Dr Ortiz and family friends comforted me and told me everything was okay.. i just left the office upset but trying to give myself hope that it was just his legs as long as he is healthy and its fixable it would be fine.
I dont know where to start so i guess ill start with the day Chris and I found out we were pregnant with our little peanut ( July 4, 2011 ). We both couldn't believe it i had taken 2 home pregnancy tests and they were both positive but at the time we couldnt figure out how to read them so i went to the doctor and got it confirmed. Chris and I were both excited/happy and couldnt wait to add our new blessing to the family !! I started thinking about the future and planning already and started signing up for all of the services i needed. i hurried and called my friend to get the number for her doc and got an appointment set up for 9 week checkup to see the baby and make sure he/she was healthy. I had been feeling so miserable between those times 6-9 weeks because of the morning sickness but knew it would be worth it when i finally got to hold our baby!!