the moments that create my life

Monday, October 17, 2011

Brother's Birth Story Part 2 and TEF repair

If you missed Part One of Brother's Birth Story, you can find it here.

After Brother's procedure was completed, they didn't bring him back to our room. My doctor had noticed a stridor after he did his job. After x-rays, the pediatrician decided to send Brother to the NICU so that they could closely monitor him. They assured us that he just had excess fluid from delivery. They also told us that he may be having a difficult time transitioning from the womb to breathing on his own, a condition called transient tachypnea to the newborn. 

Of course, we weren't prepared for this at all. I was so very upset. We were ready to get home to our sweet girl and bring her brother home to her. We wanted our family to be together, under one roof. 

My doctor allowed for me to spend another night in the hospital so we could be there with our baby boy. I began pumping and sending breast milk down to the NICU. When the nurses started giving him bottles of breast milk (rather than him nursing directly), he started choking, gagging and turning blue. His blood oxygen levels went decreased during these times. After a couple of failed attempts, the neonatologist ordered a nasal gastric feeding tube (NG tube) to be inserted and used for feedings. Brother would have the opportunity to feed from the bottle, but if he had an episode as before, he would receive the rest of the milk via the NG tube. 

This all began on Thursday after he was born on Wednesday. By the time the weekend came around, Brother was getting all of his nutrition through the NG tube. When he received the feedings via the tube, there were no problems- no choking, no gagging, no decelerations. The doctors were concerned that he had severe reflux. The doctors ordered antacids and planned to do an upper GI on the following Monday to check Brother's anatomy. 

On Monday morning, we arrived bright and early for the test. We weren't allowed to go back, but waited in the NICU waiting rom. 
After what seemed like forever, a nurse came to inform us that the neonatologist wanted to speak with us in the family room. Immediately my heart sunk. I just knew that something was terribly wrong. 

Dr. Leigh came into the room with a less than excited look on his face. He grabbed a piece of paper and began explaining to us that our baby boy had a tracheo-esophageal fistula. On the upper GI, there was a pathway evident connecting the trachea and esophagus of our boy. We were very blessed that Brother's TEF was an H-type. Apparently, this is the rarest type of TEF to have, but the easiest to repair. 
This explained why every time he fed with the bottle, he was gagging and choking. The milk was flowing rapidly into his lungs. The 'cloudy fluid' evident on his initial x-rays wasn't only amniotic fluid, it contained milk too. 

Surgery was absolutely necessary. There is no other option to repair a TEF. Without the surgery, he would have drowned. talk about complete FEAR  If we would have taken our sweet boy home on that Thursday morning, he would have died. 

Arrangements were made and our baby boy left the hospital for the first time with strangers, in a Children's Healthcare of Atlanta ambulance, heading to Scottish Rite. There wasn't room for either me or his daddy to ride with him. We could only meet them there. 

After many meetings with new neonatologists, nurses, surgeons and speech pathologists, surgery was scheduled for October 21st, his one week birthday. We arrived early that morning to the hospital with the intent of spending several nights there. Sending your teeny new baby into surgery is the most awful, strangest feelings I've every felt. I was completely out of control. My baby's life was in the hands of people I had only just met. 
We waited during surgery surrounded by our parents and pastors. 
After several hours, we got the call from the recovery room. He made it through surgery and we could meet him at the doors to the NICU. When he finally made it up to us, he was swollen and still sleeping. He was on many medications for pain. There were tubes, wires and drains all over his tiny body. 
After surgery
Post Op Day 2
The surgeon was confident in the repair. He felt certain that the TEF had been completely repaired. We were unable to hold him. He continued to receive IV nutrition. Another upper GI was performed to inspect the repair site. Unfortunately, there seemed like there was a leak in the repair site. I felt horrible. If this were so, there would have to be another surgery performed to correct the leak. 
Thankfully, another upper GI was done and there was no leak. Praise the Lord. 
Brother was a fighter. He continued to improve daily and began trying to feed within a week or so. He healed perfectly from the surgery. The drains were removed and he was well on his way home. 


sweet baby holding mommy's finger
First Halloween Spent in the NICU


We started trying to move to bottle feedings. They went fairly well but weren't consistent. We learned how to operate a feeding pump and insert the NG tube, ordered an apnea monitor and prepared to head home. 
Finally, on November 2, we surprised a sweet little girl and met her at the hospital with her grandmothers. Poor baby thought that getting to see her mommy and daddy was the big surprise for the day.  We finally got to bring our sweet baby boy home to be with his sister. Sure, we had lots of wires and contraptions. It wasn't easy but it sure was worth every minute, every false alarm on the apnea machine, every time the feed pump beeped. We love our sweet boy, his laid back disposition and his pure love for life! 
Some sweet little glimpses of our coming home day! 

Our favorite nurses, Caroline and Magda

The moment we had all been waiting for.... Sister finally got to hold her Brother. 

And they've been smitten ever since. 

Brother is doing just fine. If you didn't know that he had the TEF and repair surgery, you would never be able to tell. He has a small scar on his neck and a crazy sounding cough, but those are the only signs of anything 'different' about my boy! 
We praise the Lord that my doctor noticed something was wrong. We praise HIM for a successful surgery, for guiding the doctors' hands, for paving the way through recovery. We are so thankful for the sweet, healthy, energetic little boy that He has given to us! 


2 comments on "Brother's Birth Story Part 2 and TEF repair"
  1. Savanna, I just wanted to say hello. I'm a Christian wife and mom in NC (but from GA, go DAWGS :-). Our 6 month old son was born with H type TEF and had a start very similar to that of your little guy in terms of diagnosis/repair/healing. Thanks for sharing your story - H-type is so rare- it it good for me to read others' experiences! God bless you all! ~Ashley

  2. Hi Ashley! I hope that your little guy is doing great. You are right..... It is nice to hear other stories regarding H-type! Feel free to follow the blog and keep up with my little guy's progress and silly antics! May God bless you all as well.