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!!

Merry Christmas, happy new year, and Auri stands!!

Merry Christmas!! The kids had a wonderful Christmas thanks to all the donations of gifts!!


It's now 2011 and BIG things are happening!!


Auriana is doing GREAT walking with her walker!


Today, I got the go-ahead from 2 doctors to STOP TUBE FEEDING!!!!! WOOHOO!! Their theory is that she does NOT need 3000 calories a day and is just genetically engineered to be small... they said no worries if she looses a little weight, but that her gaining 2 lbs in a month after starting back tube feeds proves that she does not need them because that is too much weight gain. Wish us luck! I will be keeping track of everything she eats for the next week or so, and I will be getting up an hour early (which should be no prob since I don't have to get up all night) to feed her a "formal" breakfast and add all her vitamins into her food. Now, PRAY SHE KEEPS EATING GOOD AND GAINING WEIGHT APPROPRIATELY!!

Also, she just recently started pushing herself up to stand, and she is doing great!!


Oh, and Kylee had the cutest Christmas program at her preschool! If you have not seen that video... watch it here

Happy Thanksgiving!!

Yesterday was Thanksgiving.... I did not get a chance to come on and add a post, so... wishing you all a belated Happy Thanksgiving!!
We celebrated with all our family this year--we had 3 different Thanksgiving dinners!! I'm all turkeyed out...lol
So thankful that God continues to provide for us during this difficult time. Michael still has not been able to find a job, but somehow we are just making it by every day. We at least have food to eat and are still managing to pay our necessities- house and utilities! We have also been blessed to find so many things we've been able to take the kids to for FREE since Michael is a disabled veteran. A few weeks ago we were able to go the the World of Coca-Cola for FREE for Veterans appreciation week.


We also went this week to Callaway Gardens (which we get into FREE with veteran ID) and enjoyed some time meeting our friends that live in Columbus there. The girls LOVED the butterfly house...

Seeing all the different butterflies in the butterfly house was so neat... they are each unique and beautiful in their own way... just as God created us!

I am thankful to be able to spend time as a family a little more since Michael isn't working, but I am praying he finds a job very soon as his unemployment runs out next month!! I trust that God will continue to provide, though!

Our water pipe busted again yesterday in a different place than before... all the piping is bad and needs replaced, but we just keep patching the holes (which is a lot of work) because we do not have the funds to fix it completely at this time! Praying that once we get this fixed, nothing else breaks for a while! We just fixed a hole in the line in August(after being without water for a week). I am so proud of my husband this time...he did not wait to start digging down to fix it...he dug a 3 ft hole last night in the dark and will be going to get the piece to fix it this morning, so hopefully we will have water again by tonight!!

Christmas Cards 2010

Merry And Glee Christmas 5x7 folded card

Shop Shutterfly for elegant custom Christmas photo cards.

View the entire collection of cards.

Holidays on a budget...

As many of you know, this year my husband is unemployed and we are not going to have much money to spend on Christmas gifts, decorations, or Christmas cards. I recently found a post about shutterfly giving away free Christmas cards to bloggers. So, as a way to try to save my family some money, as well as be able to send out some really cute Christmas cards to my family and friends, I am blogging about Shutterfly.com, a site that allows you to upload photos and share them with all your friends and family in all kinds of ways. I know it is silly, but I am hoping that it actually works and that I will be able to send out some really cute holiday cards this year!! Last year I ordered cards from Wal-Mart, but Shutterfly's are so much better made and they have a lot more to choose from.
I also really LOVE the calenders that they offer on their site as well. I had one a couple years ago... I had it hanging up in my hospital room when I was pregnant with Auriana and it was great to be able to look up and see my family pictures on the calender as I kept track of how long I had been there and when Auriana was due.
Also, I ordered Michael's Father's Day present from Shutterfly.com this year... a photo book... which the girls LOVE looking at all the pictures of themselves and remembering all the fun they had at the beach this past April. So anyway... go check out all the cool things that Shutterfly.com has to offer!!

October flew by!

We had a great Halloween!! We took the kids to Boo at the Zoo, sponsored by CHOA and Kids at Heart.... Trick-or-treating through the zoo was a lot of fun! We went to the Halloween parade in Atlanta, and went Trick-or treating twice!! I'd say we got good use out of the Halloween costumes this year! Kylee was Dorothy and Auriana was Raggedy Ann... SO CUTE!







Auriana really took off with walking with her walker in October too... which is awesome!! Here she is walking with her walker in her Raggedy Ann costume...




We also celebrated Kylee's 5th birthday!!! She's such a big girl!! Happy birthday Princess!

Buddy Walk 2010

We had a great time at Buddy Walk in Atlanta this past Sunday!! It was wonderful to be able to spend time with our friends and family for such an amazing event. Wasn't too thrilled about the location this year... a little small for the amount of people there... but still had a lot of fun!! It was pretty neat that the local Air Force Base was also having a air show that day and we got to see several flyovers by the Blue Angels as well!! Thanks to everyone who supported our family for the Buddy Walk!!