Intro and NG Tube help/advice needed
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|Tue, 01-10-2006 - 4:52pm|
I am new here, and Jan mentioned that there are other moms here who have dealt or are dealing with feeding tubes. My name is Megan, and my special needs child is Abigail. We live ouside of Philadelphia, PA.
My dd was born in September with a bunch of problems (none of which I knew about before she was born). She had TEF repaired the day she was born (her esophagus was attached to her trachea at one end, and at the other end her esophagus just ended in a pouch). Because of the TEF, she has a pretty bad case of reflux. At 2 days old, she developed a very bad case of pneumonia where she had no healthy lung tissue, so she couldn't keep her blood oxygenated. She ended up on a lung bypass machine called ECMO. She also has Down Syndrome. Not really related to the feeding issues is that she also has what is hopefully Transient Leukemia that should go away on its own. We have an oncology appointment tomorrow that I am hoping to get good results from.
All of these things have contributed to her not knowing how to eat from a bottle very well. She came home from the hospital at 6 weeks old, and has done better with the bottle since being home, but she still only takes about an ounce at a time from the bottle. The rest of her feeding is done through an ng tube.
Does anyone have any experience or advice on how to get her to take more from a bottle so that we can get rid of the tube? We have tried different formulas, different bottles, and delaying feedings through the tube so that she'd be hungrier. Nothing really seems to have any effect.
We recently found out that one of the local childrens hospitals has a feeding clinic, and I am waiting for a call back from them to schedule an appointment. They have a 3 month waiting list, but the person that did her intake evaluation said that they try to see babies earlier. I'm kind of hoping that she is an interesting case to them because there aren't a whole lot of kids out there with Down Syndrom that have been on ECMO. That way maybe they'll get her in soon.
In the meantime, I have ordered a Haberman feeder to see if that makes any difference as well. We also have a pediatrician appt next Monday and I am going to ask them to adjust her reflux medicines. Maybe that would do something.
If anyone has any advice on anything for me to try, or if you have used a the Haberman and have any words of wisdom, I would LOVE to hear about anything that you have done.
Thanks in advance!