Our tube feeding journey!! Start to FINISH (as best as I can portray it)

The only place I know where to start is day 1... Auriana was born on September 17, 2008. She was 3 lbs. 10 oz. and we knew she had a heart defect (Complete AV Canal) and found out 8 hours later that she definitely had Down Syndrome as well as another heart defect (large PDA). She was immediately placed in the NICU at MCG and put on TPN feeds (IV fluids) for 2 days. On day 3, an OG (down mouth) tube was placed and she was fed a small amount every few hours of a high calorie formula. A few days later the tube was switched to an NG (down nose) tube, as formula was slowly increased. One nurse did attempt a few times over the next few days to bottle feed her, but I was never allowed to breast feed her... actually I was told that breast feeding this baby could KILL (right?) her! We brought her home 15 days later still on NG feeds, weighing at this point about 5 pounds, and were told we could attempt to bottle feed her but not to expect much luck. We did attempt for a few weeks and she threw up so much and was so uncomfortable and tired that the doctors recommended we stop bottle feeds all together. So we did. The next few months would be about weight gain weight gain weight gain... we had to get her big enough for surgery to repair her heart defects. Well, she gained 7 pounds over the next 5 months or so and was ready for her heart surgery in February 2009. Heart repair success!
We were then told to start trying to bottle feed again. But, by this point she had such horrible oral aversions that it was almost impossible! I managed to get her to take a few ounces a day for a few months, then we started feeding therapy. She would fight and scream every time we sat her down to eat... we tried baby cereal, bottle, cup, you name it! She would eat very little. So, she remained on the NG tube feeds as her main source of nutrition.
Sometime right around her 1st birthday, we took her for an evaluation at Marcus Institute feeding program. They evaluated her and believed she could benefit from their intensive feeding program, but insurance would not cover it and it would cost thousands of dollars and living at the center for months! We could not afford or manage this! So, she remained with the NG tube feeds every 3 hours day and night!! A gruesome schedule for me as mother to complete alone on top of our already busy schedule with appointments, therapies, getting Kylee (older daughter) to and from school. I was a walking zombie! On her 1st birthday, she *tasted* her cake!
A few months went by and she got some more teeth in and wanted to nibble of things, so I started giving her crackers, crunchies, ice cream, frozen peas... and through the summer moved on to french fries, potato chips, apple sauce, etc. But, still she would not DRINK anything!! We continued working with our wonderful feeding therapist to try and find ways to make her more willing to drink and try new foods. Without the therapist, I do believe she would be so much further from where she is now. Through therapy we were able to get her to work through the aversions into a stage of acceptance.
At her 2nd birthday she ate 2 slices of ice cream cake! She could eat, but the doctors still told me it was not enough! I began to wean her from day time tube feedings AGAINST doctor's advice!! (let me also throw in here, at around 11 months old I switched her to Dr. Sears Goat milk formula recipe (with a few addins not listed in his recipe), also against drs advice, and she stopped throwing up and I weaned her from prevacid against Drs advice. I also stopped giving her Reglan as an infant against Drs advice) Now, I am not recommending you go against your doctor's advice, but after seeing with my own eyes that doctors do not know everything and Mother's instinct is called *instinct* for a reason, sometimes as Mom we must go with our gut!
So, I went from feeding her 150 ml every 3 hours day and night through a tube, to feeding her 200ml 4 times in the night and allowing her to eat in the day.
I thought she was doing good, aside from not drinking in the day, but she was getting fluid at night. Well, then came her check-up. Her pediatrician flipped out that she had lost weight! I mentioned that we have to take into account that she had just recently gotten more mobile and independent, walking with a walker, crawling everywhere, and had recently given up most of her nap time. The doctor insisted that I put her back on the grueling feeding schedule she had once been on and insisted that if she did not gain weight in the next month, I would be reported for malnourishing my child... so, I added more tube feeds, although NOT in the day... I added 50 ml to each feeding at night... and she still ate during the day, and by this point had began drinking a little as well. I made several other specialist appointments to try to get to the bottom of why she had lost weight and why she needed 3000 calories a day to gain weight (yes, that is what she was getting at this point 3000 calories a day!! Appointment after appointment no one could find anything wrong. They all kept recommending increasing the tube feeds! I refused!!! (also, would like to throw in that at one point they had insisted on surgically placing a g-tube as well and I refused)
I switched her pediatrician, got a good report with her and she mentioned something about talking at the next appointment about weaning from the feeding tube. But, then we saw our endocrinologist, who is also a very established and respected pediatrician. At this appointment, she had gained 3 pounds since the pediatrician appointment only a little over a month earlier. I asked him "why does Auri need so many calories to grow?" He replied plain and simply "She doesn't!" After asking me a few questions and reviewing a feeding log I had kept recently, he said "take out that tube and DO NOT put it back in!" He said "she will eat when she's hungry and drink when she's thirsty!" I looked at him amazed and said "Really?!?!" You see, this had been my theory for a long time, but I was too scared to do it without doctors giving me the ok, especially after our experience with all the other doctors. He informed me that she WILL lose weight and it is perfectly ok to do so, that her metabolism is all out of whack from being force fed for so long and forced to burn soooo many calories.
So, I brought my little love bug Auri home and told her we were getting rid of her tube! She says "bye bye tubie" I said "Bye bye tubie!" I showed her the tube and said "what should we do with this yucky thing?" She responded "Uck. Tash!"..... so WE THREW THE TUBE IN THE TRASH!!! She DRANK a cup of goat milk, and went to bed. The next morning she woke up screaming "Jink... jink, jink..." My baby was THIRSTY A feeling she had never felt!! Now, she eats about 5 times a day... and really EATS... and DRINKS about 16 ounces of liquid a day by mouth with a cup!! She still does not have great skill at using a cup, but she has gone over 2 years without having to learn how to suck a bottle or drink a cup. But, now that she is thirsty, she's learning quick. I have kept a 7 day food journal and calculated calories for a few days and she is eating between 1100-1600 calories a day... which is exactly what a 2 year old should consume!
I am so proud of my baby and so glad we made the appointment with that doctor!!
So.... NO MORE FEEDING TUBES HERE!!! And we are SOOOO HAPPY!!! Mommy is starting to feel less and less like a zombie each day... ;)
so, there you have it! I have wrapped up our 28 month tube feeding journey into this post!! Hoping it may be helpful to others who are on this journey and may be a shed of hope that there is an end to this journey of tube feeding!
I also want to note that God was with us on this journey and we would not have been able to get through it without our trust and faith in Him!!