98 Days and counting

Our story doesn't just begin the day our son, John Thomas Hitt, was born.  You actually have to go back a long way before that, to the day I (mom) 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 being switched and connected to the wrong place.  After having surgeries as an infant to correct this defect, I went on to have a completely normal childhood.  But sometime in my twenties, I began to have a few difficulties.  So when Tommy (dad) 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 that we travel to the Mayo Clinic in Minnesota to meet with a doctor there who has had experience with heart patients who get pregnant.  After being seen by her and many tests being done, it was concluded that I would have a very good chance of my heart sustaining a pregnancy.  That was the good news.  My doctor back in Houston decided that to give my heart the best chance of keeping up with the extra blood volume I would have, I needed a pacemaker.  So in August of 2003, I had my first pacemaker implanted.  After I recovered from that surgery, we were ready to start our family.





Right after he was born in an oxygen hood.

A little over a year later, I found out I was pregnant.  While we were both excited, we both still knew in the back of our minds that not only was there a chance that I would have complications, but there was also a chance that the baby would have some kind of heart defect.  I was followed regular by a high risk OB as well as frequent visits with my cardiologist.  At the 22 week mark, we were able to have a fetal echo cardiogram.  This would look specifically at the baby's heart and determine if there were any major defects.  We were very encouraged when the doctor told us the baby's heart looked completely normal.  The rest of the pregnancy was smooth sailing with no complications.  Around the 30 week mark, I began seeing my OB once a week.  He was concerned with the size of the baby.  He didn't seem to be growing like he should.  In fact, he began to drop percentage wise on the charts.  So at 33 weeks, my doctor thought it was best to go ahead and deliver him, because once he was born, we would be able to help him gain weight quicker.  So on May 24, 2005, we checked into St. Luke's Hospital where I delivered our baby boy by C-section.  He was born at 9:14 am weighing 3lbs 5oz and 17 inches long.




This was taken in the first 6 days.

We knew that because of his size, he would be spending some time in the NICU at Texas Children's Hospital.  We were told the magic number for him to come home was 5lbs.  So in our mind, we just needed to get him to 5lbs and we were golden.  We were not prepared for what was to come.

He spent his first 6 days in the level 3 nursery.  Level 3 is for the most critical babies.  Many of these babies are on ventilators or have major life threatening injuries.  But John wasn't really critical.  He required very little oxygen and never needed a breathing tube.  During most of those 6 days, I was still in the hospital recovering, so it was convenient to get over and see him.




Our first family photo.
 He screamed the first time I held him.

 But after I was discharged it became more difficult and draining.  He was then moved to the level 2 nursery, where babies were less critical and didn't require such acute care.   There was a long adjustment period.  There were doctors and nurses everywhere and we didn't know who was in charge of our baby.  But once we got the hang of the whole resident and attending physician concept, it was just a matter of waiting.  Or so we thought.

An MRI was done to look at the development of his brain and that concluded that while it showed his brain was premature in development, there was nothing abnormal.  A bronchoscopy was also done which showed that his trachea was a little floppy which explained why he had difficulty breathing in certain positions.  We were continuously told that when he got bigger, he would outgrow these things.  So we continued to wait.   During this time, John was also having to learn how to suck.  This was not easy.  He had a great Occupational therapist who worked with him every single day.  She finally got him to use his sucking reflex, but getting him to drink from a bottle was a different matter.  We worked and worked and would get so excited when he would drink a whole ounce.  We used a different kind of bottle trying everything we could.  He required a feeding tube through his nose to keep him fed.



This was the funny bottle that
 he first learned to drink from.

I spent all day, every day at the hospital, sitting with John.   Tommy would come in the evenings and spend an hour or so there before coming home each night.  It was exhausting.  But after 2 months passed and he still required oxygen, we knew something wasn't right.

The doctor was considering sending John home still on oxygen and with the feeding tube.  I wasn't concerned about the oxygen, but the tube scared me.  It came out frequently and had to be put back in.  It always made him gag and cry.  I was scared to death that I wouldn't be able to do that.  The doctors decided to run a few more tests to try and figure out a cause for his continued need for oxygen.  It was determined that he was retaining carbon dioxide.  This led to the decision that he needed to have a tracheotomy.  This news brought about so many tears.  I thought I was losing my baby as I knew him.  But we were told that it would only be temporary.  Once he "got bigger" and was able to expel the CO2, he would be able to have the trach removed.  It was estimated that this would take 6 months to a year. 




  The first time I saw him after surgery.

On July 28, 2005, John went into surgery to get his trach.  They also decided to put in a more permanent feeding tube in his stomach.  This would only need to be changed once a month and would make feeding him a lot easier.  So began the wait.  I can't remember now how long we waited, but it seemed like forever.  My mom and dad had come in to wait with us.  My mom and I got very emotional when we had to hand him off to the nurses for surgery.  It was a very difficult day.  But finally, we saw the doctor, who told us that the surgery went well and they were getting him ready to move him to the level 3 nursery.  We were told it would be a while before we could see him, so we decided to go and get dinner.  When we came back to the hospital, we were finally able to go in and see him.  I was not prepared for what I saw.  He had a ventilator attached to his trach.  In order to let the stoma in his neck heal, he had to be sedated and paralyzed.  They gave him a drug to keep him from moving at all, so that the site could heal.  He had to stay that way for a week, and that was the hardest week of my life.  I couldn't hold him and I couldn't even touch him.  All I could do was sit and look at him.  He was being pumped full of fluid but because he couldn't move, the fluid was causing his body to swell, including his head.  It was all so scary. 

After the first week, his trach site had healed nicely and they began to slowly wake him up.  I was so happy when I was finally able to hold him again and when all of the fluid finally worked its way out of his body.  But now we had to learn to take care of him.  We spent the next month watching and learning how to do trach care and how to suction as well as how to use his new feeding tube.  For a short time he was put in a private room, 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 that my son was never really that sick, and it helped me realize that no matter how bad we thought we had it, it could have been worse. 




Trach Collar

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

Finally the day had come.  We had learned all there was to know about how to clean the trach site and how to change the trach.  We learned how to suction and how to use the new feeding tube.  We were given a test on correctly packing his travel bag that would have to go with us everywhere we go.  John had one final test to pass before they would discharge him.  This was the car seat test.  He had to sit in his car seat for 1 solid hour without his oxygen saturation dropping below a certain number.  We were able to put his seat in his stroller during this test and stroll him around to visit all of his nurses and friends in the NICU.  He passed the test with flying colors and we were finally given a discharge date.

For us, August 29, 2005 will always be remembered for 2 reasons.  This was the day that Hurricane Katrina made landfall in south Louisiana and changed the lives of so many people.  But it was also the day John Thomas Hitt was finally discharged from the hospital.  It was his 98th day in the NICU and we were so happy to finally bring him 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. 




Wasn't so happy about seeing the sunshine.

John came home in a limousine of sorts.  Hospital policy said that he had to be transported home in an ambulance, just in case something happened on the way.  Since we lived an hour from the hospital, it was probably a good idea.  So Tommy rode in the Ambulance with him, and I followed behind in the car.  That was the first of a few ambulance rides he would take in his life, but probably the only time we were happy for him to be in an ambulance.

We then had to get use to life with nurses in our house around the clock.  But I found that even with the nurse there during the day, I still wanted to do all of the care giving.  So after the first week, we decided to discontinue the day time nurse and just have a nurse at night.  We were able to get a good night's sleep so I could spend the day loving on my baby boy.  Life as we knew it was over, but we were so happy to finally have him home.




His first smile.

Here we are, almost 13 years later.  What we thought would be 6months to 1 year of having the trach, turned into 10 years.  At 4 months old, he began to have sleep apnea.  We thought it was something that he would outgrow, but he never did fully.  That is the one reason he 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.  Everything went perfectly as planned, and the next day, April 23, 2015, he became a member of the naked neck club.  The trach was removed and he hasn't looked back.  We have not missed that thing for one single day since.


He continues to be developmentally delayed in all areas of development.  He has a hearing and vision impairment.  But even with all that he's been through, you will never find a happier boy.  He loves everyone and everything and lives life to the fullest every single day.

It has been and continues to be a long journey, but I wouldn't trade a single minute that I've had with my baby.  Tommy often reminds me that he isn't a baby any more, but he will always be my baby.

This is a journey we will be on for the rest of our lives, but it is one that is worth taking.  Every time that he gives me his sweet hugs and kisses just reminds me why we continue to do this everyday.  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 are glad he did.  I know he has a purpose for us and for John that is far greater than anything we can imagine.  I can't wait to see what that is.  It must be amazing.  So I'll close with a few more pictures from his first year.  Thank you for reading this and thank you to everyone who has gone on this journey with us.  We have an amazing support system of family and friends who have helped keep us sane all of this time.  They have loved us unconditionally and we will forever be grateful for all they have done.



Sleeping in his very own bed.



One of his many funny faces.



First Thanksgiving

Geaux Tigers!



Family Photo