In February my wife gave birth to John David Miller.
It was a typical pregnancy and a typical delivery, but John was not a typical baby.
Our new baby boy had a few interesting features.
- Bent fingers
- High arch in palate
- Recessed chin
Each item by itself normally wouldn’t spark much concern, but all of the features together began a series of tests and a journey that would last for several weeks and that is still on-going.
During his first week of birth there were concerns with weight gain, but after many days of consistent hard work with his feeds, we were able to show consistent weight gain via bottle feeding. There’s nothing like the threat of an implanted feeding tube to motivate parents. He already had an NG tube down his throat. He also underwent extensive genetic testing, x-rays, and MRIs to rule out any obvious issues.
After John was released from the hospital we continued to see weight gain, albeit small. It was still a gain. This steady gain lasted for a few weeks until late April when the weight gain slowed, then stopped all together. We were noticing that his feeds would take forever, much longer than average. We already had two children and I never recalled this much of a struggle with their feeds. His pediatrician became concerned and suggested hospitalization and a g-button implant.
On May 2nd, 2014 my wife took John to a scheduled genetics appointment follow-up. During his weigh-in it was noted that he had lost a few ounces. We’d find out later that their scale may have been slightly off, but even if it had been accurate we would have just prolonged an inevitable hospitalization. Since his genetics doctor was located in the same building as his pediatrician, a quick phone call and visit was made. We were given the choice of admitting him that day which was Friday or to wait until Monday. We decided to go ahead and admit him that day to McLane Children’s Hospital in Temple, TX. We really just wanted it over with. This began about a month long ordeal.
A feeding tube called an NG tube was placed down his throat upon arrival. It was assumed that he was simply overworking when eating. It was also assumed that he would immediately begin gaining weight again over the weekend. Unfortunately this did not happen.
Over the next few days his weight would either remain the same or drop. On that following Monday he was seen by multiple doctors. The team observed that when he breathed, his chest would pull in. It was determined that his larynx was collapsing with each breath. Their thought was that he was possibly overworking when breathing which in turn burned more calories than he was taking in.
On Tuesday, surgery was performed to remove excess tissue which was causing the over exertion. He had to be intubated, sedated, and couldn’t eat until he was extubated. After he recovered from the surgery, which took about 24hrs, he was allowed to resume eating. Again, no significant weight gain occurred. It was then officially determined they would place a g-tube or g-button into his stomach. It was a tough decision, but a needed one.
The following Wednesday, about a week after his larynx surgery, he had surgery to place his g-button. It was a quick operation. Within about 24 hours after the surgery he was allowed to use the tube. They were allowing a small number of bottle feeds and he was still getting nutrients via an IV. Unfortunately his doctors needed to determine a proper feeding regimen. This took time. It seemed like every day he would either lose, or stay the same. This was the most agonizing part. In addition he contracted a respiratory infection. It’s not uncommon in hospitals. He wasn’t suffering and was actually quite content. He’d often smile for his photos. He didn’t seem to know anything was wrong.
Finally, now we’re in late May, he started gaining weight. His team wanted to see at least two days of consistent gain. Fortunately they got to see it. With a few adjustments to his feed amounts, less time on the bottle, and a continuous feed cycle in the overnight, progress became evident. His muscles were not having to work as hard. His low muscle tone did seem to be having an effect of his lack of weight gain.
He was finally released on May 28th with much fanfare on social media.
I can tell you that the hardest part wasn’t that I was concerned with his well-being. Deep down inside I knew they’d find a solution to his weight gain issues. What bothered me was the disconnect from my wife Jacqueline. She was at his side the entire time while I remained with our boys, ages 3 and 8. Her mother came down from North Texas and helped us which allowed me to stay in the hospital for a few days as well. Her mother eventually had to return to work about a week from the end of the ordeal.
It wasn’t that I didn’t know how to care for my boys, it was that I didn’t have a back-up. If something happened to me, I was all that they had for those remaining days. We received great help from my co-workers, and the members of my church stepped up and watched Joseph, our 3yr old while I worked and our 8yr old, Alexander, was at school. I’m by no means trying to compare myself to a single parent. They’re often on their own for years and it is a struggle. With me I was just outside of my comfort zone.
Overall, John is healthy. There are going to be many more follow-ups to hopefully determine what he may have, if anything. His team did toss out the word cerebral palsy, but this will be something we’ll need to monitor for the next few months and possibly years.
In the end I’ll say, never take things for granted. Whether they be people, God, or even our own routines. Always remain positive even when others don’t expect you to. It’ll pay off in the end. Remember, we’re either about to enter a storm, in the storm, or leaving a storm. It’s a cycle that will continue for the remainder of our lives, we just need to know where to place our faith. I’d say start with God, everything else will fall into place.
For now, we’re working on recovery.