My blog takes you along our journey as we learn at our 20 week ultrasound that our little boy will be born with a lethal skeletal dysplasia. Follow us through the tough choices, the long days, and ultimately the greatest joy. If you have come here and are faced with similar circumstances I want to give you one thing, something that was stolen from us by doctors, specialists, and even friends, and that is *HOPE*
Tuesday, April 28, 2009
chromosome results
We got a call from our perinatologist and the chromosome results (for downs syndrome, Trisomy 18, etc.) are negative. We praise God for these results as there was mention of him having both skeletal and chromosome problems. We are still waiting on the results from the other part of the test. Any day now we will be finding out if our baby has a lethal diagnosis. Every day seems so long, and I pray that when we do get the call we hear good results. We are praying for our babys life. For a miracle.
the amnio decision
We were offered an amniocentesis to help us figure out a more exact diagnosis for our baby. In the past I never would have considered an amnio. There is a risk of miscarriage with the procedure, however with an experienced dr. using u/s guidance the risk goes down. I needed answers. I am so pro life, but wondered if it was even humane to bring a baby into this harsh world with so many physical disabilities, the doc said he will most likely never walk and might have limited use of his hands. There might be mental retardation. I started feeling so guilty for even thinking this way. I know that this experience is helping me to be way less judgemental about others. I didnt think i was judgemental before.. Lord God please forgive me for the times I have judged someone when I had no idea what they had been through. OK, so i went ahead with the amnio and it wasnt horrible. My huband had to work so I was going to have to go alone, but my son timmy who is 14 offered to come along. I was leary to let him as I wasnt feeling like dealing with normal selfish teenager for a two hour trip to missoula where i knew he would then want to go shopping because he had been saying how he really needed pants...etc. He said " I wont be like that mom" so I believed him and off we went to Missoula! Tim waited in the car for me so i had to walk into that building, the one where they told us just how many problems our son would have, the one with the long hallway of doom... but I did it! It went fairly quick, there was a dr visiting from salt lake and he scanned the baby and then took me into the office to discuss things. He seemed more optimistic about our baby, or maybe it was just that he knew he wouldn't be directly involved as he was just visiting, but his optimism gave me something that i hadn't had in awhile... hope. He measured the chest of the baby and said that that was a really good sign as a lot of the skeletal dysplasias are lethal due to breathing problems due to the chest being so small. We left the apt. and i let Tim drive, he has a learners licence, and he drove us to the mall( i told him to)and when we got there i suddenly felt sick and vomited in the parking lot. We shopped for a little bit and got Tim his jeans, and then we headed for Kalispell. I let Tim drive all the way home and he did great! I was so proud of him. He was sweet the entire time and even when we were going to the mall and I got sick he said "mom, we should just go home".
20 week ultrasound!
It seemed like this day would never come, and here it was! The day we would find out if we were having a little girl or boy. We had a shopping trip planned for that weekend in Spokane, which is about five hours away, so we could indulge in pink or blue to our hearts content. We took two of our boys with us and they were equally excited to find out if they were getting a sister to protect, or a brother to teach their mischievous ways to. The ultrasound tech started the scan and it wasnt long before even our untrained eyes could see that we would be shopping in the little boys department that weekend! The scan progressed without much comment from the tech. Nick held my hand as we watched our little guy move around. We exchanged smiles and hand squeezes as the tech went on to measure the legs and feet... It wasn't long before the tech said "ok you are done" I asked for the dvd we were told we would be getting and she said "oh...... well these pictures are just as good." Oliver, our eight year old, tried to talk her into going back in and making a dvd but she hurried off. We were a little upset, but we left the appointment content knowing our baby was indeed a boy, and seemed to us to be healthy! The day after the U/S I recieved a call from our midwife saying I needed to call her. My heart dropped, it suddenly hit me why the u/s tech wasn't chatty, and why she didn't give us a dvd... could something be wrong with our baby?? I tried to call her back immediately and she was in with a patient. I was assured she would call back shortly. After an hour without a call I decided to try back and she was at lunch.. I asked if someone could just look at my chart and see what she was calling for, after a minute or so the nurse got on the phone and said that she didn't see that the u/s results were back yet and the only note in my file was about my heart(which is another story) and told me that as soon as the midwife was back she would call. She finally called and said that the radiologist from the hospital had called her and thought we should see a perinatoligist due to the baby's legs appearing shorter than they should be and the feet looked "turned in" . I immediately called Nick and together we talked ourselves into the hope that it was nothing. We made an appointment to see the Perinatolist in Missoula that Friday. We started browsing the internet and trying to understand what might be possibly wrong with our baby. Friday came and as soon as Nick was off work we headed to Missoula. It is a two hour drive to missoula, but the trip there seemed as if it took forever. We prayed, listened to the radio, tried o fill the silence with smalltalk... and finally we made it safel to the medical office where we would be getting a level 2 u/s. We walked up to the third floor and turned to see a long narrow hallway. It felt like a halway of judgement.. what would we find out.. the stress was about to be too much. Inside the receptionist was super friendly and I had to fill out some paperwork. Then we sat and waited for them to call us back. Stuart Little was playing on a tv in the waiting room and we watched it in desperation for something to take our minds off of what was happening. Eventually we went back and a very friendly tech started our u/s. She let us listen to his heart, and we sat and watched her take many measurements of our little boy. She then went out and got the Dr. and he came in to finish the scan. He took more measurements and we would see that our baby's bones are at least 2 weeks behind in growth. He promises to talk to us about all of his findings in his office as soon as he is done scanning. He showed Nick and I into his office and he stepped out for a minute. That's when Nick and I both lost it. We clung to eachother, we had seen the bent bones, the dates that were even worse than we initially thought. The Dr came in and went on to discuss the baby's problems. He said that the baby had bent femurs and how short all of his long bones were measuring. He also said that the baby's pinkies seemed to be curved and turned in. He said that the baby appeared to have microganthia, meaning a very small chin, and he wasnt sure if the baby could close his mouth. He also said that the baby has pretty bad clubfeet. The window in the office was closed but I remember wondering if I jumped out of it if I would die. My heart was breaking at every word the Dr spoke. He told us that we could terminate the pregnancy or carry it to term. He thinks it might have skeletal dysplasia, some are lethal, some not. Or he might have Osteogenesis Imperfecta, some types lethal and some not. We might be able to deliver him in our hometown, Kalispell, or may have to go to missoula or spokane depending on if the neonatoligist in Kalispell would be comfortable with him being born there. Nick stayed fairly composed, but i cried as i listened to ths dr. tell us the grim future of our baby boy. He asked us if we had any questions and i said i just needed to go home. Once out in the hallway Nick and I clung together and cried for our poor little baby. I cried most of the two hours home. Sobbing, and fealing a gnawing dreadful pain overtake my soul. I cried out to God and wondered if he had heard all of the prayers we had prayed. We made it home and broke the news to our children. They cried with us. Nick and I were numb and went to bed early.
Two pink lines
Thanks for stopping by. I am not sure where to start so I guess I will start with the day we found out we were pregnant with our little peanut. Nick and I were both overjoyed when a pregnancy test confirmed what I had felt, we were pregnant. Of course part of me couldn't believe it so we ran to the dollar store and bought three more tests. I had to use the bathroom so bad, but didn't want to because I wanted to take another test! We finally made it home and i took the second test and it again was positive. We were both happy and started dreaming of adding a new blessing to our family. It wasnt long until I started getting morning (all day) sickness and was suffering from extreme exhaustion. I spent a lot of time in bed and used what little energy I had to clean up the house and get the shopping done. It was not fun at all but I knew that it would be well worth it when I finally got to hold our baby.
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