Johnny's Story

Hey guys! K.J. here checking in from Primary Children's NICU. A lot of you have been asking about our baby boy, so I think a bit of explanation is in order. Believe it or not, our little 2 lb. 9 oz. miracle is only three weeks early, but I get ahead of myself.

Our journey with this little guy got interesting about five months ago after his first regular ultrasound. After the nurse did the ultrasound, she told us that the doctor wanted to see us in his office. Not a good sign. When we met with the doctor, he said they had noticed that his growth was a little delayed, he had extra fluid on his kidneys and ecogenic bowel (meaning it was blocked up). On their own, these things aren't necessarily bad, but put together they are soft signs of a genetic disorder. At the time, they told us there was a good chance he had Down's Syndrome or Trisomy 18. Having had a similar scare with Eva, we knew what Trisomy 18 was and that it wasn't good. Children with this genetic disease rarely live longer than a week, and baby boys' life spans are usually even shorter.

The following months were filled with uncertainty for our little family. The further the pregnancy went along, the further our little Johnny fell off the growth curve. With subsequent ultrasounds we found that he had an AV canal heart defect which further concerned our doctors. Without getting an amniocentesis, however we couldn't get any answers. The only problem for us was that the test would not be covered by our insurance and it is quite expensive. With each subsequent doctor's visit, they became more and more concerned that he may have Trisomy 18. Finally after many prayers and several hours on the phone, our insurance company relented and told us they would cover the amniocentesis. We were thrilled to finally get some answers, so on Dec. 14, we got the test and settled in for a two week wait for the results.

Ever since that first ultrasound, we prepared ourselves for the worst. The longer we waited, the more sure I was that I would be burying my son before my 26th birthday. We walked each day by faith, unsure of many things but sure of the covenants we had made and the eternal nature of our family.

The week after Christmas we finally got the results back from the amniocentesis. His cells were normal. We were happy, but perplexed. Nothing had changed. If anything his prognosis had gotten worse. He was falling further and further off the growth curve so this news left us with no answers. We knew what he didn't have, but we still didn't know what was going on. The doctors decided it would be best if Macie delivered at the University of Utah, because to give him the best chance at survival, he would probably have to be taken to Primary Children's Hospital. The specialist who was going to deliver couldn't meet with us until Jan. 13. We decided that we would move up to Salt Lake on the evening of Jan. 12 so that we could be close. Once again, it became a waiting game for us.

Fast forward to Jan. 11. Macie spent the night having fairly regular contractions, but not regular enough to go to the hospital. At about 6:30 am on Jan. 12, her water broke. Not sure we would be able to get to the U of U hospital in time, we rushed down to Utah Valley Regional Medical Center. Upon our arrival, Macie was hooked to monitors and given an epidural but didn't progress. Around 8:45, they lost Johnny's heart beat and we decided to do an emergency C-section. At 9:08 am, our 2 lb. 9 oz. miracle was born. At first he wasn't breathing, but after a few tense moments, he let out a feeble cry and they put him on a ventilator and he and I took an ambulance ride up to Primary Children's while mom recovered in Provo.

Since his arrival, he has done great! They took him off his ventilator on Jan. 13 and took him off his oxygen yesterday (Jan. 15). They are doing studies to see why he is so small and what caused his heart defect. At this point, it looks like Macie got a virus early in the pregnancy that may have caused all these things, but it could also be a genetic problem. His heart defect is better than we originally thought. He may not need surgery on it until he is one or two (instead of the six to eight months we thought at first). His most pressing need right now are the cataracts he has in both eyes. Before he leaves, they will have to remove them and he will have to wear thick glasses until he is about age 13, but as long as everything goes well he will be able to see.

Not even in my highest of hopes did I believe that my son would be doing this well. Five months ago, I gave up most of my dreams and hopes of being able to raise him. Today, I am preparing for eight and thirteen years into his future! Johnny is tiny, but our doctors call him the rock star of the NICU. He is surpassing all expectations. The more I get to know him, the more I realize that this kid has a great work to do.