Back home to Gulf Coast

Through a miracle of a loophole Shands was able to insurance to pay for Teryn to be transported back to our home hospital. We were thinking we were really close to going home. We got home the day after she did. When we arrived at the hospital we found out that she did not handle the transport well and was having a lot of desats and apnic episodes.

We were so happy to be back around our family and friends and of course our furbaby Xavier. We could finally allow a few others to come in and meet Teryn. It was so great to finally be able to show her off.

There was concern about her breathing and there was some suspicion about possible reflux. Once the symptoms were explained to me I began to see evidence right away. An upper GI study was done to see how sever the reflux was. The results showed that the reflux was pretty severe. Because of this she was scheduled for surgery to have a Nissen Fundoplication done. In this procedure part of the stomach is wrapped around the esophagus to tighten the sphincter in order to prevent the reflux. Because of Teryn's inability to swallow it was decided to go ahead and have a gtube placed for feeding. This is a tube that is inserted in the side of her abdomen and provides a direct track for the food into her stomach.

We had gotten to know some of the nurses at GC. They became our hospital family and the NICU was our other home. On the day of Teryn's scheduled surgery our special nurse friend, Mel, was assigned to Teryn. I felt a little better knowing that she would be with her. She made sure she had an arsenal of things to keep Teryn comfortable during the procedure. Mel called us periodically to let us know how things were going. When the procedure was complete the surgeon came in and told us that everything went great. He said the gtube was a little trickier than he anticipated but that it would be monitored over the next several days.

We waited and waited for them to come out and tell us that she was settled back in for recovery and we could come and see her. After almost an hour Mel came out and told us that they suspected she may have had a seizure as she was coming out of the anesthesia. She had been given a dose of anti-seizure meds and would be having a head ultrasound.

The head ultrasound results showed that she has hydrocephalus (fluid on the brain) and that there was something abnormal about her corpus callosum. The neurologist said there was no way to know if this would have any future implications for her but that she would be set up to begin receiving a series of therapies as soon as she was discharged. This would help to counteract any possible delays. Monitoring of the fluid was done to be sure the pressure was not changing. the results continued to remain the same so there was not going to be a need for a shunt.

Teryn remained NPO (no food) for a little over a week due to the uncertainty about her gtube. She was eventually put back on feeds at a very low rate that would slowly increase. Then I received a surprise. My mom and I were holding Teryn and she was very fussy. We decided maybe it was her diaper. I layed her on the table and remove her blanket. When I did I saw that her gtube had come out. A little bit of panic ensued and we were asked to step out for a few minutes. The tube was put back in and the surgeon was called to come and look.

The surgeon decided that it would be best to go in and revise some things but this time it would have to be done through an incision instead of laproscopically. Thankfully another wonderful nurse was with her that day. Kathy prepared her and assured us she would keep us updated. Teryn handled everything well. She was allowed to begin feeds a couple days later and was doing well at first until she began refluxing again. This time with visible milk coming out of her nose and mouth. We tried increasing the volume at a slower rate and even going on to continuous feeds. She was still refluxing which was making her apnea worse and just making her hurt in general.

Things were looking better for a while and discussion and preparation began for us to be discharged to go home. That week the regular neonatologist was on vacation and there was a doctor from Miami filling in. That week Teryn continued to have more trouble feeding from the gtube and her apnea was increasing. He mentioned being transferred to Miami and we immediately shot him down and said now way. I mean, we had just been told we were about to go home. I began really thinking about it and watching my little girl struggle just to be able to eat. I began doing research. More importantly, I spoke to several of the staff that I developed a relationship with and whose opinions I regarded highly. Each one of them led me in the direction of Miami Children's Hospital. James and I discussed and prayed and finally said we agreed it would be best for her to go and be evaluated by experts in every area who specialize in children.

I have to tell you that in the 5 weeks we were at Gulf Coast we received amazing care. Our decision to leave had nothing to do with lack of care. Our little town and little hospital are simply limited in resources. However, we received excellent nursing and therapy care from an amazing group of people who truly loved our little girl. We are still in contact with them and we are so grateful for everything they did for us while we were there.