Collett Family Chronicles: Thomas Carter

FINDING OUT

When I was 20 weeks pregnant I went in for my routine ultrasound. We found out that I was expecting a boy and from what they could tell he looked healthy, but they had a hard time seeing his heart clearly because of his position (I was carrying him really low). We were excited for Nathan to get a little brother and to welcome Thomas into our family. When I was 28 weeks along my OB decided to do another ultrasound to get a better look at our baby. This time the ultrasound showed some heart problems. When the doctor told me I wasn't too worried since many of my nieces and nephews had heart problems that were easily repaired. In August, Jared and I met with a perinatologist for another ultrasound. He was very frank with us and told us that he saw some major heart problems at the very least. He also recommended doing some genetic testing.

I had never done genetic testing before because I was worried about false positives and the risk of miscarriage from amniocentesis. However my OB told me of a new genetic test that only requires blood from the mom called MaterniT21 that is 99% accurate. A week later my OB called me with the results. We found out our little Thomas has Down Syndrome. I was shocked. My first reaction was feeling completely overwhelmed. I was already worried about handling 4 young children--how would I handle taking care of a special needs child on top of everything else? I mentally started throwing all my life plans out the window. I thought, How will I be able to homeschool? I will never be able to serve missions with Jared when I'm older. How will Jared be able to go back to school? We will drown financially in medical bills. We can never have more children. After a lot of prayers and tears I realized that I was jumping to a lot of false conclusions. Of course there would be added responsibilities, but I could still live my life and work toward my dreams. If Thomas was to change my plans, I knew from past experience that the Lord's plans are always better the ones we make for ourselves anyway.

As we were dealing with this news we decided to take a trip down to Boise so that Jared could get a blessing from his father. Jared's dad gave him a beautiful blessing that helped us both to realize that although Thomas would bring a lot of extra responsibility, he would also bring great blessings to our family. He would teach us compassion and give us an example of unconditional love. This blessing helped change our perspective of Thomas' diagnosis. We looked forward to meeting this sweet spirit. I am grateful that we had this time before Thomas' birth to prepare emotionally to welcome him with our whole hearts into our family.

THOMAS' BIRTH

When I went in to get my cerclage removed on September 29th, my house was a mess and my bags weren't packed because I didn't plan on having a baby. As I was being monitored the nurse noticed that Thomas' heart rate decelerated three times. Doctor Turner ordered an ultrasound that showed I had almost no amniotic fluid. I was quickly rushed off for an emergency C-section. So this is unfortunately my only pre-delivery photo.

After Thomas was born I was very scared because there was no crying, he was very still, and he looked all blue. I was worried the dream I had had a few days previously (of Thomas dying before he was born) had come true. It took them 4 minutes before they were able to get him to breathe. It turns out there was a mucus plug blocking his airway.

Here he is being ventilated once they were able to clear the plug from his airway and intubate him.

Here he is in the NICU shortly after birth

AT HOME

Nathan ended up spending all day with our friends who graciously watched our kids for us. After Jared went to get the kids and bring them home, Nathan was so tired he went to his room and fell asleep on the floor next to his bed.

After delivery we called my parents. My mom quickly dropped everything and was on a plane the next day to come help. I came home a day later and the kids each got a book from me and baby Thomas. The next week was spent trying to recover from my C-section and taking trips to and from the NICU while my mom and Jared helped take care of things at home.

KADLEC NICU

Thomas was really sick after birth. He had some sort of infection so he was treated with antibiotics. The doctor thinks that my amniotic sack must have had a leak or been broken. He also had trouble with his platelet levels and needed a couple transfusions. He was being fed through IV tubes and still had difficulty breathing. They were able to get him off the ventilator after a couple days, but he still needed oxygen. I didn't even hear Thomas cry for the first several days. I wanted so much just to hear him cry to know that he could at least do that one thing. Our home teacher came to the hospital with Jared to give him a blessing. In the blessing he was told that he would recover and his organs and bowels would be able to function properly. This blessing gave me much peace during this period of stress.

Jared holding Thomas for the first time when he was a few days old.

Thomas opening his eyes. After 3-4 days he started opening his eyes and moving around a little more.

Nathan visiting Thomas. He was excited to see that Thomas had sunglasses just like he did when he was in the NICU. Some of the NICU nurses even remembered taking care of him when he was there 3 years ago.

Maddy visiting Thomas.

Abby visiting Thomas.

My mom saying hi to Thomas.

After a week Thomas was still unable to have a bowel movement, so the doctors decided to fly him to Seattle Children's where they could test him for Hirschsprung disease.

SEATTLE CHILDREN'S

Thomas flew and Jared and I drove up with Nathan and my mom took care of the girls back at home. From our first night going in to see Thomas we knew that Seattle Children's would be the best place for him to get the help he needed. The staff was very friendly and welcoming. Thomas had his own, quiet room rather than the busy, overcrowded one at Kadlec. Instead of just one doctor to care for him, he had a team of specialists who met daily to discuss his treatment. We felt that the doctors and nurses wanted us to be involved in Thomas' care and let us hold him as much as possible.

The staff quickly began weaning him off his oxygen and warming bed. They also did the biopsy to test for Hirschsprung which came out positive and he was scheduled for surgery.