This last April I was in Disney World for the International DECA competition with my students from Hillcrest High. While I was there, I felt sick and exhausted.
After I returned home from the trip, I tested positive for our 4th pregnancy! This little baby was going to be our rainbow baby after two miscarriages from 2014. We were so excited, but wanted to wait cautiously until we were into the safety net of a second trimester.
At only 5 weeks pregnant we were able to get an ultrasound that showed the start of our little guy and his wonderful heart beating away! That gave me some reassurance and we held our breath that this wonderful baby would stay with us. Every appointment brought the sweet sound of his heart beat. He moved a lot and always changed positions while we were trying to listen. As we got closer to our 19 week appointment, Shane and I had decided on the name Thomas if the baby was a boy. Thomas is a dear family name- Shane's father had a little brother that passed away named Thomas. It was classic and felt right. We took forever trying to come up with a girl name, but landed on Samantha.
The 19 week appointment was a family event. Taylor and Shane were with me as we anxiously watched the ultra sound images to see our baby's cute little body grow and to find out if we had a Thomas or a Samantha. All three of us were ecstatic when we saw that we indeed had a baby Thomas moving and wiggling all around. Something odd was said though during the ultrasound. The tech had asked if we had our baby tested for any genetic problems. We said no.... but thought it was odd she asked. I was bummed though that they didn't get a great picture of his face. We did get one nice side profile though.
It was the next day that a dark cloud came over us when we received the phone call that our little Thomas had Skeletal Dysplasia. We were told that his bones in his limbs and his ribs were not shaped correctly or the right length. At this point, they said it might not be lethal but we would find more information later as we met with a specialist up at the U. We were devastated and started wondering how Thomas's life would be different. We also immediately started researching Skeletal Dysplasia since we hadn't even heard of it until this phone call.
We learned that Skeletal Dysplasia is what causes dwarfism. There are several hundred different types of Skeletal Dysplasia. Some of them are lethal and some of them the babies are able to grow and live relatively normal lives. Specifically, 30% don't make it to birth and 25% don't make it past the first 6 weeks of life. Knowing these statistics broke our hearts. We wanted to be hopeful that Thomas would live and would just have other complications and procedures that we would face with him. One of our main concerns was his mobility and his mental abilities. Babies with skeletal dysplasia also tend to be preemie. We knew Thomas already had a high chance of being preemie since my water broke prematurely with Taylor and she came at 36 weeks.
I was 23 weeks along when we met with our specialist up at the U of U hospital. It was a long couple of weeks waiting to find out more. Shane and I went alone to the appointment and were able to more clearly see his little limbs, a very bent leg, bowed out ribs, and his little chest. His heart was still going strong. After a long and thorough ultrasound session, we met in a private room with our specialist. She explained that Thomas had unusual shaped ribs that prevented her from being able to figure out a diagnosis for his type of Skeletal Dysplasia but the good news was that his measurements were in a safe range that made it so his type was not a lethal one. Hooray!
Questions about his physical abilities and mobility were going to have to go unanswered until after his birth. His mental capacity was not expected to be impacted. His ribs and bent leg were concern areas but could be fixed later on. We were told he might have some of his bones replaced with titanium later on in his life as Thomas grew. We declined genetic testing until after delivery. They said even if we did test at this point there was a good chance we wouldn't know which type he had. After Thomas was born though, through x-rays and further examination we'd have a much higher chance of knowing what type of Skeletal Dysplasia he had.
The benefits of knowing what type is huge. We would know what other complications are common, how tall he was expected to grow, and what kind of longetivity we could expect for his life. We also would be able to know if Thomas inherited the genetic disorder from us or if it was a fluke in his DNA. If he inherited from Shane and I then we would need to test Taylor to see if she was a carrier.
We had a lot of family and friends praying for our little boy. There was so much love and support towards us and Thomas. We knew he would be loved no matter what. I truly felt honored to be his mom. To think what a special boy he is and that I'm the one Heavenly Father is entrusting to be his mother....I already loved him so much. I had felt so grateful for eternal families and that no matter what Thomas would always be our son.
On October 5th we had our follow up appointment at the U. It was just Taylor and I because we thought we were just seeing how Thomas had grown and to maybe have more questions answered since I'd be farther along. Instead the dark cloud that was looming over us turned into the darkest storm I had ever faced. Thomas's measurements were not where they should be for the amount weeks he should have grown. His measurements were now in the lethal zone. They weren't able to get me a good view of his face and the conversation was very quick and to the point. Our little Thomas had a type of Skeletal Dysplasia that was lethal because of how little his limbs and ribs were. His ribs would eventually restrict his lungs which meant that life outside the womb would be fatal for him. There was also the possibility of him being stillborn. Either way, my little boy's life was endangered and I had just received his death sentence. He had too many measurements that were in the lethal range and that were too concerning for life.
I left the hospital bawling with Taylor in my arms. We reached the car and I called to share the heartbreaking update with Shane. That very day and the weeks that followed led to many words of comfort from friends and family members. Many prayers were said for our family and blessings were given. People had asked what they could do to help but I honestly had no answer. We didn't even know what to do ourselves. It had been the strangest feeling to plan for the birth of our child and also need to plan for his death.
At this point our hope was to have ANY amount of time with Thomas. I wanted him to make it to birth even if he was preemie and that we would get to look in his eyes and hold him...If we were able to only get minutes with him we would understand that his body was just too much for him and that it was his time to go.
We actually had a scare one weekend where it didn't seem like I had felt Thomas move for about two days. I also felt like I was having the same contractions that I had in the weeks leading up to my water breaking with Taylor. I was so scared that Thomas had already passed away and that my body was getting ready for labor. We went up to the hospital and luckily he was ok and my contractions weren't progressive so they thought I still had some more weeks ahead of me.
For my last appointment on November 3rd, Shane was not able to attend because of work. I was scared that I'd receive worse news- that Thomas's measurements were even worse that he was most likely going to be still born. I knew that we had our family fast the Sunday before for us and for baby Thomas. At this particular appointment I had such a strong feeling of peace walking in. No matter what the update was I knew our family was being watched over and that whatever was going to happen we would be able to accept it and feel peace.
The ultrasound images showed the same as before: little ribs, little arms, little legs and a strong heart beat. This time though, my boy wasn't so wiggly. He must have been asleep because he barely moved and it made it easier for the tech to get the images more quickly. Also, she was able to get a wonderful 3D image of his sweet face. Seeing Thomas's full face for the first time just brought me to tears. I wanted to kiss his cheeks, snuggle his face, and tell him that mommy was there for him.
Afterwards, our doctor walked in told me that EVERY SINGLE MEASUREMENT was now BARELY in the safe zone. Just by decimals. None of his measurements were in the lethal range. They were all barely in the threshold of safety. This is not to say that things still can not change and that he is definitely safe... but what this means is that our Thomas does not have an automatic death sentence at this time. Our baby boy might have more time with us. Our baby boy has a chance. I know that the peace I felt walking into that appointment was because I did not need to be scared, because what I was about to witness was a very special miracle. Even if this miracle means that we get to take him home with us for a few days or for a few years, Thomas has a chance.
Our doctor specifically said she's cautiously optimistic. So we too are going to be cautiously optimistic. The Neonatal team that will be on Thomas's case will be contacting us now that we may only be weeks away. They will help walk us through what to expect and decisions that might need to be made. We will be contacted soon by the hospice care at Primary Children's so that Shane and I can prepare our wishes in case Thomas needs to leave us early.
I know that Thomas did not receive a golden ticket saying that he will live and that he will just have some physical limitations from being a little person with some other health complications. I know that he is still not ok and that his life might only be a short while with us in the hospital. However, I can not deny the miracle that took place at that last appointment. The night before the appointment I had started shopping for an appropriate outfit that would fit him for when we would need to bury his sweet little body. Now, I'm wanting to find him appropriate outfits for while he stays in the NICU. I feel so grateful for this glimmer of hope. So grateful that his definite death sentence has been sat aside. So grateful that there is a greater chance of me looking into his eyes and watching Shane and Taylor hold him versus him being still born. I'm just so grateful for Thomas. So grateful I get to experience this much love. So grateful to be his mother. So grateful for the power of prayer and the comfort that I am able to feel during such a dark & unknown time.
I have no idea what the next couple of weeks will look like or what the delivery will look like or what our first moments with him will look like but I am currently cautiously optimistic.
