The road to adding John to our family was a long and difficult one. Thomas and I actually just decided to start trying right before Joseph turned 2 yrs old. Right as we decided is when we learned we were having our first of several miscarriages. We finally learned we would be welcoming a healthy child in June of 2013. Of course, we were very scared. Since we learned that I had a problem with processing folic acid. They believe that is why I was suffering from so many miscarriages. I started taking a prescription dosage to help. We still didn’t announce until after our 1st trimester due to all the heartache we had experienced already.
My pregnancy with John was pretty typical. I did have bad morning sickness, some extra visits to make sure everything was ok, and Makena shots to avoid preterm labor. The shots were due to preterm labor with Joseph, and obviously, we did not want history to repeat itself. Otherwise nothing really out of the ordinary. I craved mashed potatoes and snow cones. We did choose to not know the sex of the baby until birth. Well, it was more my desire to not know and since the doctor said: “If mom does not want to know, then I can not find out either.”
The day I went into labor, we were actually at church. Since we did not have family nearby I had spoken to one of my friends about keeping the older boys while I was in labor at the hospital. I messaged her while we were in church asking if we could take the boys by when we got out. It was actually Alexander’s, our oldest’s, birthday. So I had to take his birthday dinner of meatloaf, and his cake over to their house. When Thomas and I had arrived at the hospital, I was taken upstairs to labor and delivery. Within 4 hours of arriving at the hospital, John was here.
We were not aware of any problems through any ultrasounds or blood work. So when I had John the only thing that we noticed was his bent index fingers right away. The next day we had someone coming in wanting to do an ultrasound on John‘s head. At that point, we denied them access to John until we started getting answers on what was going on. After another 24 hours, finally; a pediatrician came in stating many concerns they had about John.
He had bent index fingers, a bubble arch, almost a cleft palate, but the muscles of his mouth just meet vs intertwine like they should, soft palate, the bones in his skull seemed to be either fused or overlapping, recessive chin, and a severe tongue tie. They were sending off blood work to rule out Down syndrome as well as many other genetic disorders.
We had his tongue tie clipped at almost two weeks old after enough pushing to get it done. We discovered John had a PDA & PFO (hole in the heart and the valve not fully closed), and severe reflux as well.
We spent the first 2 weeks in the hospital with John in the NICU mostly due to his feeding issues. He would not finish 60mls (2 ozs) within 20 mins. We had to use a special nipple with the bottle for those with a cleft palate for a while due to all of John’s latching issues with a bubble arch and soft palate.
The doctors wanted to place a g-button. When you hear words like that as a parent you do whatever you can to avoid that. We finally got John to eat in the time frame they wanted so we were discharged.
In August of 2014, John had a sleep study and it was discovered at the time that he had over 400 apnea events in less than 8 hours. I had traveled to Texas Children’s Hospital the day of his sleep study alone with John. The morning after we were informed that we could not be leaving and were admitted to the PICU (Pediatric Intensive Care Unit). After several conversations with his ENT via phone calls due to being unable to leave Texas Children’s Hospitals. We did a titration sleep study with a CPAP which satisfied the doctors at Texas Children’s Hospital to allow us to leave. Dr. Powitzky (ENT) & I were on the same page that we were to be taken to McLane’s Children’s Hospital for any procedures to be done by him. We had an appointment it was determined that John would need a tracheotomy.
On a monthly schedule we will have speech 3 times a week (twice at an outpatient therapy center, and one through school), physical therapy once a week, occupational therapy twice a week. We will also see at least one of his many doctors/specialists. We have: Dr. Meza (pediatrician), Dr. Powitzky (ENT), Dr. Ogborn (Pulmonary), Svenja & Dawn (Trach Specialists), Dr. Ramprasad (GI), Dr. Goad (Podiatry), Dr. Weber (Hand surgeon), Dr. Blazo (Genetics), Dr. Souder (Ortho), and Dr. Pliska (Cardio) on our team.