When Will Whitney Wean...: Feeding Tube Awareness Week Day FOUR

To answer todays Feeding tube awareness week's question about ours and family and friends attitudes towards feeding tubes:

First off, I would really like to know what you all think about feeding tubes and Whitney having one!!? I’m curios to know your opinions and feelings about tube feedings!!

I think that most, if not all, of my family and friends have a postive attitude towards tube feedings and why Whitney needs one. We are very blessed to have such understanding people in our lives. Most of our friends and family are shy and embarressed to ask us about her feeding tube. They just don't want to offend us I think. It's understandable, but they shouldn't be! And I'm sorry if I make them feel that way, because I really can talk about her feeding tube, it's her birth story that I can't talk about with out crying. Also, when we brought Whitney to church for the first time, she was about 9 months old, people though the NG tube was oxygen! I nicely explain that she was off of the oxygen and this was her feeding tube.

Before Whitney was born, I knew she would rely on a feeding tube in the NICU and possibly come home with one, so I did a lot of research. There's really not much out there! I was really glad that Whitney didn't have to come home with a feeding tube. They said she was taking a good amount of formula through the bottle and taught us very well on how and when to feed her. I was so glad! Whitney's homecoming was the happiest day of my life! I know its sad that her birthday was not the happiest...she was born dying. Of course it was a very good thing that she was born, which makes it a very happy day, but in reality, it was a very sad day. She was able to come without the feeding tube but she was still oxygen dependant.

I thought "I'd prefer the oxygen rather than a feeding tube!" One of my fellow CDH mama's Baby came home with one and I didn't really understand it myself!! I was also jealous though that this mother was able to breastfeed her CDH survior baby. You know I tried for about a month to pump for Whitney and tried to keep it so that I could feed my baby. But I could hardly get any milk (TMI?) and I was so depressed and it was so hard to find time to pump when all I wanted was to be with Whitney. Eventually I had to stop, unfortunately it was before Whitney was able to eat.

Working with Dr. and Therapist, we tried everything we could to avoid Whitney getting a feeding. But obviously, she truly needed one to survive. She was screaming at a every bottle feed. We tried everything; music, rhythm, dark, light, quiet, warm bottle, room temp bottle, swaddled, all diffent positions, and more. She was even on prevacid.

I thought she'd only need the NG tube for a little while to help get her strength back and weight up. But, it was ultimitely causing more aversions! Sure it saved her life, but it made her not want to eat. So after 9 months on that, I myself pushed for a g-tube! Of course at first I thought it was gross and scary. I talked to a ton of other mama's whose child had one and that was a huge help for me to understand it better!

My CDH mama's baby got weaned off her tubie and is now a great eater. Of course I'm a bit jealous of kids who can eat, but my attitude towards Whitney's feeding tube is that it's a life saver! And I'm very glad that I can blend up a whole healthy meal for her to have and not just formula!

Although she is very underweight, she's growing, and very smart. She's at the 3% for weight, 50% for height, and the height to length ratio she is 2%. Any ways, tell me what you think and I'm happy to answer any questions!