98 days and counting

February 16, 2018
John flashes a smile during his lengthy stay at the Texas Children's NICU in 2005

Our story doesn't necessarily begin on the day our son, John Thomas Hitt, was born. You actually have to go a long way back before his birth, to the day I was born. You see, I was born with a congenital heart defect. This defect is called transposition of the great arteries, and it involves the two major vessels of the heart switching and connecting in the wrong place. After undergoing multiple surgeries as an infant to correct this defect, I went on to live a completely normal childhood.

But sometime in my twenties, I began to experience a few difficulties. When Tommy (John’s father) and I decided we were ready to start a family, there were concerns about whether my heart would be able to sustain a pregnancy. My doctor in Houston suggested traveling to the Mayo Clinic in Minnesota to meet with a doctor who had experience in helping congenital heart defect patients get pregnant. After seeing her and undergoing many tests, it was concluded that my heart would have a very good chance at sustaining a pregnancy. This was the good news. My doctor back in Houston recommended a pacemaker, which would allow my heart to keep up with the extra blood volume I would endure during pregnancy. So, in August 2003, I had my first pacemaker implanted. After I recovered from that surgery, we were ready to start our family.

A little over a year later, I found out I was pregnant. Tommy and I were both excited, but we quietly recognized the associated risks for both me and the baby. I was followed regularly by a high-risk obstetrician and cardiologist, and we were able to have a fetal echo cardiogram done at the 22-week mark. This looked at the baby’s heart and determined whether or not there were any major defects or complications. We were encouraged by the doctor when he told us that the baby’s heart looked completely normal. The rest of my pregnancy was smooth sailing. Around the 30-week mark, I began seeing my obstetrician once a week. He was concerned with the size of the baby, and said he wasn’t growing the way he was supposed to. So, at the 33-week mark, my obstetrician decided it was best to go ahead and deliver our baby boy. We checked into St. Luke’s Hospital on May 24, 2005, and I delivered John Thomas via cesarean section at 9:14 a.m.

It was obvious he would be spending some time in the NICU at Texas Children’s Hospital, due to his size. We were told the magic number to bring him home was 5 pounds. In our minds, we just needed to get him to 5 pounds to be golden. We were not prepared for what was to come.

John wasn’t very critical at first, but spent his first weeks with the other critical babies. He required very little oxygen and never needed a breathing tube. After I was discharged, he was moved down a level in acuity.

We had an MRI done to look at the development of his brain, and while it showed his brain was premature in development, nothing was abnormal. A bronchoscopy was also done, which showed his trachea was a bit floppy, explaining his difficulty breathing in certain positions. We were continuously told when he got bigger, he would outgrow these problems. So, we continued to wait. During this time, John was also having to learn how to suck. This was not easy. We had a great occupational therapist who worked with him every single day. We tried so hard to get him to drink, but he required a feeding tube through his nose to keep him fed.

I spent every day, all day, in the hospital with John. Tommy would briefly come in the evenings each night. It was exhausting. After two months passed and John still required oxygen, we knew something wasn’t right.

The doctors decided to run a few more tests to try and figure out a cause for John’s continued need for oxygen. It was determined he was retaining carbon dioxide, which led to the decision to perform a tracheostomy. I thought I was losing my baby as I knew him with every procedure, but we were told this would all only be temporary. Once he “got bigger” and was able to expel the carbon dioxide, he would be able to have the trach removed, which was estimated to take six months to a year.

On July 28, 2005, John went into surgery for his tracheostomy. The doctors also decided to insert a more permanent feeding tube, one that would only need to be changed monthly. So, the wait began. I can’t remember how long we waited, but it seemed like forever. My parents came in to wait with us, and we were very emotional when we had to hand him off for surgery. It became more difficult every passing moment.

We finally saw the doctor, who told us the surgery went well. I was not prepared for what I saw when we went to visit John. He had a ventilator attached to his trach, and he had to be sedated to allow the stoma in his neck to heal. John had to stay this way for a week – the hardest week of my life. I couldn’t hold him, or even touch him. All l could do was sit and look at him while he swelled from being pumped with fluid.

After the first week, John’s trach site had healed nicely and the doctors began to slowly wake him up. I was finally able to hold him again. Now, we had to learn how to take care of him. We spent the next month watching and learning trach care, and how to suction and utilize his new feeding tube.

We had a private room for a short time, which was nice. But one day, the baby in the room next to us passed away, and I heard the loud screams and cries that came from his mother. That tore my heart apart. I was so thankful my son was never that sick, and it helped me realize no matter how bad we thought we had it, it could’ve been worse.

John moved from the ventilator to a trach collar, to an HME and finally to the one-way valve. It was so satisfying to see him progress to where he required less and less support. He still needed a small amount of oxygen, but we at least knew he was expelling carbon dioxide.

Finally, the day had come. We had learned all there was to learn about cleaning and changing the trach. We learned how to suction and use the new feeding tube. We were even given a test on how to correctly pack his travel bag. John had one final test to pass before discharge – the car seat test. He had to sit in his car seat for one solid hour without his oxygen saturation dropping below a certain level. He passed with flying colors, and we were finally given a discharge date.

Aug. 29, 2005, will always be significant to us for two reasons. First, this was the day Hurricane Katrina made landfall in Louisiana and devastated the lives of so many people. Second, this was the day John Thomas Hitt was finally discharged from Texas Children’s Hospital. It was his 98th day in the NICU, and we were so happy to finally bring our boy home. As we were leaving, one of the nurses told me to take him home and keep him there. In other words, take care of him so he doesn’t have to come back to stay.

John came home in a limousine, of sorts. The hospital’s policy said he had to be transported home in an ambulance, in case something were to happen on the way. Since we lived an hour from the hospital, it was probably the best idea, anyways. Tommy rode in the ambulance with him, and I followed behind. This was the first of a handful of ambulance rides for John, but probably the only ride associated with happiness.

We had to become acclimated to life with nurses in our house around the clock. I found that I still wanted to do all of the caregiving, even with the nurses there. After the first week, we decided to discontinue the day-time nurse and keep just a night-time nurse. We were able to get a good night’s sleep so I could spend the day loving on my baby. Life as we knew it was over, but we were so happy to finally have him home.

Here we are, nearly 13 years later. What we thought would be a single year maximum for keeping the trach, turned into 10 years. At 4 months, he began to have sleep apnea. We thought he would grow out of it, but he never fully did. That’s the one reason we kept the trach for so long. On April 22, 2015, John was admitted to Texas Children’s to have his trach removed once and for all. The next day, he became a member of the naked neck club. We have not missed that trach for a single day since.

John continues to experience delays in all areas of development. He has hearing and vision impairments. But even after all he’s been through, you’ll never find a happier boy. He loves everyone and everything, and lives life to its fullest every single day.

It has been, and continues to be, a long journey for us, but I wouldn’t trade in a single minute that I’ve had with my baby boy. Tommy often reminds me that he isn’t a baby anymore, but he’ll always be my baby.

This is a journey we will be on for the rest of our lives, but it’s one that’s worth taking. Every time John gives me his sweet hugs and kisses, I’m reminded of why we continue to do this every day. Our life isn’t easy, but it could be worse. I don’t know why God chose us to be the parents of this little guy, but we’re glad He did. I know He has a purpose for us and for John that is far greater than anything we could ever imagine. I can’t wait to see what that is – it must be amazing.

The Hitt family will be honored at the 20th Annual Bad Pants Open Golf tournament, presented by RBC Wealth Management and Capital Markets. This event will raise funds to support live-saving programs and services for the tiniest patients at Texas Children’s Newborn Center in need of premier medical treatment. To register your team, click here.

Post by:

Joanna Hitt, mother of patient