Faith was around two years old when she got her Mic-Key button and began eating via feeding tube. And honestly, it was a nightmare. She hadn't been eating enough to gain weight or to meet her nutritional needs so this was really our only hope. She had the surgery and was discharged that night. When we brought her home we did just as the nurses told us to do. We hooked up a large syringe to her feeding tube that was connected to her button and slowly allowed the liquid to go into her tummy. When we first started out, she was receiving three ounces of Pediasure every three hours, four times a day.
Sometimes the liquid went into her tummy too quickly and she ended up with an upset stomach, vomiting it back up. We learned to go as slow as we could and it took a lot of patience. It took us about 30 minutes to get all three ounces into her tummy. Another issue with her enteral feedings is that if she moved too quickly after receiving her feeding she would throw up. We had to learn to allow for her to be able to just sit for up to an hour after her feeding before taking her out of her chair. It was all a slow and painful learning process.
Sometimes she ended up with air in her tummy and that caused her to throw up as well. Rob and I both experienced a lot of throw ups - him more than I since he was home with her at this time. Sometimes we could stop it by attaching the syringe to her tube and button and getting the air out of her tummy, which is called venting.
There were also times that she had just gotten a feeding, her tummy would be completely full and then she would have a bowel movement. With her trying to push everything out, sometimes the fluid got pushed up and another throw up ensued.
It seemed to take forever for her to be able to digest three ounces, four times a day. Along with these feedings we were also supposed to be offering her solid foods as well so she wouldn't lose that oral stimulation and that desire to eat. It was hard to know when to offer her solids because we didn't want her to end up with an upset stomach. It was all a learning process.
Eventually we reached the stage where she was receiving four ounces, four times a day. We still had the occasional throw up due to air or her having a bowel movement but things were getting much better. Her pediatrician wanted to see if we could get even more Pediasure into her so he wanted us to try feedings at night. This meant we had to get a pump. We would hook her up to the pump after she had fallen asleep and set the pump's rate so she received an ounce an hour. Some nights she did okay with this, some nights we had to shut it off because it seemed to be affecting her sleep. Then in the morning we had to try and gauge how long we needed to wait before starting her first feeding of the day.
We began to use the pump for her feedings during the day as well. It was nice for me and Rob because we didn't have to sit there for an hour and manually give her her food. We just let the pump do the work for us. Whether she was being fed manually or with the pump though, we had to find a way to keep her entertained for the duration of her feeding. Most kids can just get their feeding dumped in quickly with no problem but Faith's tummy seemed utlrasensitive and just wouldn't tolerate quick feedings.
We bought her a personal DVD player. Her first DVD was Cookie Monster's Best Bites. She had never seen a DVD before and she was totally enthralled. We then began to add to her collection and bought her the Praise Baby DVDs which she loved. She also liked some of the Baby Einstein DVD's and Elmo's World as well. To this day this is her favorite activity during a feeding, it allows her to totally relax which helps with her feedings.
It has been a long road these past four years with Faith's feedings. We really hoped in the beginning she wouldn't need it for very long. We had heard stories of kids getting the feeding tube but not needing it after a few years because they began eating more solids. This was not the case for us. For whatever reason, Faith just does not eat enough food. She likes to eat solids every once in a while but not very much in one sitting.
To date, Faith has probably gained 30 pounds since having her g-tube. She is now up to receiving 10 ounces of pediasure every three hours. That's a lot more than the three ounces she started with! On occasion, she still has throw ups but it is a lot less than it used to be. We are still hoping and praying she will not always need to be fed this way.