Jack was always a beautiful baby. Even with all the tubes and wires, no one could deny that he was gorgeous. When I got to really see him for the first time, I was overwhelmed by his sweet spirit. I couldn’t believe that my beautiful beautiful boy was so sick.
I can’t remember when I learned all the details of Jack’s condition. Of course things were uncovered at all different times, and nothing was ever for certain. He did suffer from pulmonary hypertension – which was the most life threatening and of biggest concern.
The doctors at Blank thought that Jack might have Trisomy 18 because of the way his hands were formed (called a “Trisomy salute”). Other things also indicated a trisomy disorder: no gallbladder, undescended testes, agenesis of the corpus collosum in the brain, short sternum, and small ears (they hadn’t seen his daddy’s ears: which are also tiny). They immediately sent off DNA for testing. We would know in about 5 days if he did have Trisomy 18, 21, or 13. If it was Trisomy 18, then he was estimated to live only 5-15 days.
One of the nurses told us she was certain he didn’t have Trisomy 18. She had seen it before and she believed he just didn’t have it. Nothing was certain though, so we just had to wait and wait.
For three days, Adam and I stayed only with Jack and at night shared the tiny twin bed in his room. I learned quickly why most women stayed in the hospital for several days following a c-section, because the pain was incredible. They had prescribed some pain killers, but they also induced sleep so I only took them when I had to rest. I was able to get my staples removed in Des Moines and the nurse was amazed at how well my scar was healing and that there was zero infection. While the pain was inevitable, the healing was miraculous. After about 4 days, the pain was very much subsided…or maybe I was just really good at ignoring it!
On Friday, the 21st, we were overjoyed to learn that all possible Trisomy disorders were ruled out, but Jack was also having a really rough day. The doctors told us to prepare for Jack to be sent to Iowa City where there was an ECMO machine if needed. They didn’t want to wait until he absolutely needed ECMO, because then it might be too late. Once he reached a certain point, they had no choice but to send him: just in case. We stayed with Jack until he was ready to take off in the helicopter, then we once again went home to Ames to pack a bag and head to Iowa City: two hours away.
Before leaving, however, our bishop and Adam were able to give Jack his name and a blessing. The blessing was so beautiful. In it, Jack was commended for the decision he made to come to Earth and receive a body, and he was promised that he would come forth on the morning of the Resurrection with a perfect and glorified celestial body.
Jack was doing much better when we arrived in Iowa City, and over the next 13 days, we continued to ride the “Jack roller coaster”. There were highs and lows, breakthroughs and set-backs, de-sats and recoveries. But the lows were more prominent then the highs, and on the 3rd of December, there was no choice but to put Jack on ECMO.
We now know that all the ECMO machine did was prolong Jack’s life for 26 days. He did not improve, and although ECMO is not technically a life support, that’s exactly what it was for Jack.
After 21 days, Jack’s doctor told us that he would only give Jack one more week. If his heart did not either heal completely or substantially, then they would be taking Jack off of ECMO, and would allow him to die in our arms.
Adam and I never let go of hope. We knew that miracles can and do happen. We continued to pray that Jack’s heart would heal and that he would overcome the hypertension. But we also knew in our hearts that this was not God’s plan for our family; for our Jack. We knew that Jack would soon be leaving us.
And we had peace.