Feeding tube awarness 2014- day 1

Today's topic: Why do I/does my child have a feeding tube? What positive benefits have come from tube feeding?

Jillian has a feeding tube because without it she can not sustain herself. Her first feeding tube was placed on February 9th, 2013. That was during her first hospital trip when she was there for 5 days because of vomiting. One of her tests showed that her stomach has excess amounts of gas in her stomach so they placed an NG tube to help the air drain out. The end was left uncapped and it drained into a diaper overnight. It is funny how little things through the journey pointed to the fact that this would be more long term. We love the nurse that placed her first tube and I remember the placement vividly.  She told us there there were two different styles of tubes they could place, one that could only stay in a day or two and the second was a kind that could be left in for a month. She said she put the month long one in just in case it needed to be in for a while. I am not sure if that conversation was preparing us for a month later but looking back it was interesting how everything happened.

Her first tube that was draining into a diaper

The details of 3 days in the hospital

A month later Jillian was back in the hospital. This time it was for a 9 day stay. She went in that time because of a horrid cough and she would cough so hard she would vomit. Her o2 levels were not in a good place and she was on oxygen for multiple days. After 4 days her o2 was good enough for her to go home but she was not gaining any weight and they can not send a child home with a diagnosis of "failure to thrive" who is not showing that they can gain weight. On the 6th day in we tried feeding her 1.5oz every two hours for 24 hours. There was still vomiting but it was the first time she showed any weight gain in 9 days. A young doctor came in and said that we would just have to keep that schedule up at home so we could go home. An experienced GI doctor came in and shook his head at that plan and said it would never work. He was completely correct. It was hard to wake her up to eat. She did not want to eat every 2 hours. She was not going to get the sleep she needed to grow and we were not going to get the sleep we needed to function. He said that we needed to look into a feeding tube. He said that in his opinion a feeding tube was the best option. The young doctor walked in and was surprised by the the thought of a feeding tube and just kept saying it would probably only be in for a week or two. I knew in my heart he was wrong but I just kept agreeing. Honestly, at that point I wanted something to help our little girl. There was so much vomit and she was so little. Something had to change. So one night, just before 10pm a nurse placed her NG tube. The next day we were taught how to care for and replace her NG tube. It was a lot to learn in a short time and it was kind of a mess getting the feeding pump lined up but it all worked out and that Saturday night we were able to leave the hospital with our little girl. At that point she was tube fed from 10pm to 6am and then bottle fed every 2 hours during the day with 1.5oz bottles.

 The next month was better in the fact that we knew she was getting food in but it was still hard. There was vomit most mornings and vomit all day. She spent a lot of time choking and I stopped sleeping because she was coughing and choking so much during the night. Her pediatrician told us that we needed a refresher in CPR because she was afraid that one night she was going to choke on her vomit and we were going to need to use CPR to bring her back. That is one of the biggest punches in the gut you can get as a parent. We knew once again that something needed to change. My mom and I took Jillian to her GI appointment at the end of April and told them all that was going on. The doctor came in and said that Jillian was being admitted that they were placing a NJ tube. An NJ tube goes into her intestines.

Life got a lot easier. We brought a different child home from the hospital. We continued to try bottles once a day and they still provided a lot of puking. By June we knew the tube was not leaving any time soon and made the choice to schedule surgery for July to have a GJ tube placed. Her surgery was scheduled for my birthday. We spent the morning at the zoo and then went over to the hospital. One of the hardest things was watching her go through those double doors into surgery and not being able to follow her. We went into the waiting room and a little while later the doctor came in and asked to speak with us privately. I knew in my gut something was wrong. The doctor told us that they were able to look around in her stomach however they were not able to place the tube because of where her stomach was in relationship to her rib cage. They stopped the surgery and told us that she would need to go in at a different time for an open operation. We were crushed.

A week later we were called and told that it would be a month wait before she would be able to go in to try again to place the tube. We then got a second call that asked us to come the next day. Later that day Jillian decided that she was ready for her new tube because she pulled out her NJ tube. Instead of going to the hospital the next day we ended up going in that afternoon so they could keep her hydrated until surgery. This time surgery went well. They placed in by making a 1.5in cut just above her belly button. She did great after surgery and we were able to go home the next day.

The day after GJ tube placement

Life since the tube placement has been maintenance. We have done multiple food trials that have all gone the same way: vomit. She has had aspiration pneumonia twice and the start of it once in the past 3 months.

What are her diagnoses?

Gastric reflux
Slow weight gain of newborn
On enteral nutrition at home
Feeding difficulties
Constipation
Vomiting
Cough Reactive airway disease Stridor

That list does not explain a feeding tube though. We highly suspect that Jillian has a gastric motility disorder. She will eat something and it will come back out hours later. She will be placed inpatient again in March for more testing to verify the gastric motility disorder. Currently Jillian's stomach still does not handle food inside her of it and she could not sustain herself by eating orally. She is 100% tube fed.

What is the benefit of her having a feeding tube? LIFE! Before Jillian was starting to fall behind developmentally. She did not roll over until she was 7months old. She was so tiny. At one point her weight for height was at the 0.00 percentile.  She fell off the charts and was not able to bring herself back. For us we see the tube as the gift of getting to know our amazing little girl. We are so thankful for her tube. We are thankful for the doctors who have worked so hard to help our little girl. We are so grateful for God carrying us through this last year. We are grateful for all of our family and friends that have walked this journey with us.

Feeding tube are not just for the elderly. They are for an active little girl who has a bright future ahead of her.

Here is our video documenting the last year of her tube feeding adventure: