The first few days!
My son was born on October 25th, 2014 at 7:53 pm at 34 weeks gestation after a premature rupture of membranes at 32 weeks and 4 days. He came into this world screaming, and so healthy looking that we were shocked to learn he had a tracheoesophageal fistula. Before I share his birth story I need to share what happened after.
Shortly after he was born he was taken to the NICU. Knowing he was 6 week premature the two biggest things we were worried about were his breathing, and his ability to suck and breathe at the same time. Babies typically don’t start to develop that ability until they are 35-36 weeks in utero, and he was born at 34 weeks. To combat this they needed to put a tube into his nose and down to his stomach to administer his feedings until they could determine how he would do.
The neonatologist came to talk to us to have us sign his ‘permission slip’ for the NICU, and she said that upon evaluation the only thing she saw so far was that he had a limp thumb, and she didn’t know how much function he was going to have out of it. It was such a minor thing that she wasn’t even going to worry about it until right before he was ready to go home, or even after he went home. We were relieved.
Then she asked about my pregnancy and I mentioned that right before my water broke my stomach had really POPPED in the two weeks prior. I said that judging from the copious amount of fluid I lost, and how much fluid I still had on my ultrasounds, that I thought I had too much amniotic fluid. I had read online that there were several things to cause this, and I thought that what caused mine was my blood sugars. I just barely passed my blood glucose screening at 28 weeks with a 136 (140 is failing). I was surprised that she made note of it, because I had mentioned it every other doctor I had spoken with since being admitted to the hospital and every doctor shrugged their shoulders and didn’t seem to think anything of it.
As I was being transferred from labor and delivery to mother baby we stopped into the NICU so I could see my son. It was then that the pediatrician walked up to me and with sad eyes said, “Mama knew something wasn’t right.” My son was discovered to have a tracheoesophageal fistula, of which there are many different types and the severity of them vary greatly— what it basically means is his esophagus does not go from his mouth to his stomach, but rather forms a fistula to the trachea and there is a disconnect. To repair this requires surgery that only two hospitals in our state do— luckily for us one of them is right down the road. He was going to be transferred there tonight— but he wasn’t emergent and was otherwise stable.
As a nurse I remember learning about TE-Fistula’s in nursing school. However, all I remember learning was that these kids develop severe oral aversions and even at 5,6, or 7 years of age are still being fed by feeding tubes placed into the stomach (g-tubes). So my mind goes to the worst possible case and that dark place is where I stayed for much of the next 36 hours. I was terrified for my son.
The good news was that my son was otherwise doing very, very well. His lungs were perfect and his oxygen levels never dropped and he never needed assistance. His sucking reflex was developed, and did not result in any apnea episodes. He was able to maintain his temperature without much assistance. We honestly believed that had our son not developed a TE-Fistula he would not have needed an extended stay in the NICU and would have been home with us.
He was transferred to the other hospital 7 hours after his delivery, and I was discharged 18 hours after delivery with the promise to make a follow up appointment in 2-3 days. After being discharged my husband and I checked into an extended stay hotel that offered discounted rates for parents in our situation, and we went to the NICU. We were able to be with our son when he turned 24 hours old, and change his diaper and check his temperature. At this point no one could tell us at what kind of TE-Fistula he had and what the plan of care was was, so we made an appointment to be back to speak with his surgeon the next day.
We met with his surgeon he spent 45 minutes or more explaining everything and answering our questions. We learned then that baby boy has a esophageal atresia with a distal tracheoesophageal fistula— which means that he has a blind pouch at the end connected to his mouth, and the remaining of the esophagus is connected to the trachea. This is the most common and easiest to treat types. When we heard this it felt like an elephant had been lifted off our chests. He was also hopeful that he could repair this in one surgery, though he did warn us there were other things we may face in the future, but he was very optimistic about our potential outcome.
He went on to explain that with tracheoesophageal fistulas you are more prone to other abnormalities in certain other areas of the body, and there is the anagram VACTERL to help them look. V: vertebral A: anorectal C: cardiac T/E: tracheoesophageal fistula R: Renal L: limb. We learned all of the horrible things he was at risk for like not having developed an anus, or a whole slew of cardiac abnormalities, or malformed kidneys… Our son had only 3 letters from the VACTERL: T/E and L. Obviously he has a tracheoesophageal fistula, but for limb what he has is his left thumb has very small bones in it, and the doctors are not certain he will have much function out of it— which the neonatologist at the first hospital had already made note of.
A plastic surgeon met with us and he told us that he isn’t even going to look at it for another year. If he has some function out of it they will leave it be, and if not they may move his index finger down to his thumb spot so he will have an opposable appendage. It just is not something we are concerned about at this time. As it is they can’t really evaluate it until they see him use it. In a year when we might be facing another surgery it will be more pertinent, but for now we were thankful that was the only other issue he was facing.
After we learned all of this he informed us that our son’s surgery was booked for the next day (Tuesday October 28th) at 7:30am. We were so happy, scared, and excited at the same time. He told us that (assuming everything went text book) the plan was: After surgery he would have a chest tube in place, and he would still be intubated. They would keep him intubated for as long as he needed, because they have the ability to see how much he is breathing on his own over the machine. The chest tube would be closely monitored for 7-10 days for drainage and if there was no abnormal drainage they would preform a barium swallow study. This is a test where they use contrast to see what is swallowed and where it goes to make sure the connection is good. If that came back good they would then place a feeding tube and administer bolus tube feedings and make sure there still was no leakage at the sutures by monitoring the chest tube. If that looks good they would pull the chest tube, and then it would be a waiting game for recovery and getting him to feed and nurse. We are looking at a NICU stay of 2-4 weeks, but potentially longer.
After this amazing news, we updated our families and friends and then we did what we had been dying to do since he was born, which was spending time with him. We spent the evening with our son; changed his diaper, and just sat with him. We left around 11pm, and would be back at the hospital at 6 the next morning. Our journey is just beginning.