Gabrielle was prenatally diagnosed with TEF/EA (A rare birth defect in which the esophagus is shortened) after not being able to see her stomach in level two ultrasounds. I then began to have problems and had to have my labor induced. After she was born the x-rays determined she had esophageal atresia (her esophagus was not connected to her stomach) and the gap was pretty big. Her surgeon did not want to use another tube/body part to replace the missing esophagus, for it leads to further complications, so he wanted to wait for her to grow and try to stretch her esophagus to try to make them closer together to join. He said she would stay 2-3 months in the intensive care unit for babies.
Two days after she was born, she had surgery to put in her g-tube (tube that delivers nutrition directly to the stomach). A couple weeks later, her surgeon took her down to the operating room to stretch her. He did that a couple times in the operating room. At that time, Gabrielle could not swallow any of her saliva or anything because there was no connection, so he had a tube in her nose suctioning everything out. She would constantly pull on it and yank it out and nurses would have to come and place it back in her nostril.
About a month later, he took her down again and saw that there was no progress, so he had to do stretching more often, about 3 to 4 times a week. He could not take her down to the operating room so often and set up IV, so he had to do it at her bedside. The dilator that he used to stretch was about 3/4 of an inch wide and it looked like a hose. He had to stick this down her throat and down her esophagus every other day while she was awake.
She screamed and screamed while it was being done. This eventually caused a bad gagging reflex. She was not taking any milk by mouth but it worried her occupational therapists how it would affect her when it was time for her to drink. They tried dipping her pacifier in sugar water to help her with tastes and to be interested when it was time for her to eat.
This went on for about a month or so while also going into the operating room for procedures. Finally her surgeon decided it was time for her surgery when she was about 3 months old. Surgery was supposed to be two hours so we sat in the waiting room. Two hours went by, three, four, five... A nurse from the operating room came in and said the surgeon said it would take a little longer because it was more complicated than he expected. There was still a 3-4 cm gap but he connected them, which led to extreme stricture (narrowing) of her esophagus.
(Sister Rosanna goes into the details of the surgery) She was in critical condition and was given medicine to be paralyzed and sedated for 3 weeks. She then got an infection where they gave her antibiotics but it wasn’t helping because the infection kept growing. They had to perform a spinal tap to test for the infection to get a better idea of what exactly the infection was. She then got an ulcer and had to have four blood transfusions.
She then went back in the operating room to see how the connected esophagus looked. They did a test, and there was a leak. She had to have a tube placed in her g-tube that went to her intestines to feed her. They did not want food going up and spilling from that leak. The doctors told me it could take up to six weeks for it to heal, but within 1 week it healed!
At almost 4 months of age she was given her FIRST bottle! She drank about 10 ml.
She then had another procedure done, but my little fighter fought it all! God brought her through it all. He was with her every step of the way.
After 4 months in the hospital my baby was ready to come home. They did a few more tests. I got the equipment I needed at home and learned how to use it, and learned how to give her medications.
I had to make about 10 appointments that month, from cardiologists to therapists. She was also born with a hole in her heart. That closed on it's own!
She had to go in to outpatient surgery every 2 weeks for about 3 months where she had no food for about 8-10 hrs before her surgery. Not even an IV. They only put that in, in the operating room. Now her surgeon is looking into every 6 weeks for each outpatient surgery!
We saw therapists, 3 of them, who examined my baby girl and asked us our goal for the next three months. I said “walking” (she was about 8 months) and they all looked at me like I was out of my mind. They said three months to crawl and another 3 to walk. So they were looking at 6 months in total for walking. Within 2 weeks after that, Gabrielle started sitting, crawling, scooting, and standing on her own!
I must say, my baby girl Gabrielle....is PERFECT!
She is doing so much better now, Thank you Jesus!