Intro and NG Tube help/advice needed

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iVillage Member
Registered: 03-28-2003
Intro and NG Tube help/advice needed
3
Tue, 01-10-2006 - 4:52pm

Hi everyone!

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!
Megan

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iVillage Member
Registered: 03-19-2003
Tue, 01-10-2006 - 8:22pm

Megan, thanks for dropping in again and sharing your story about Abigail.

 


 



iVillage Member
Registered: 06-15-2004
Tue, 01-10-2006 - 9:37pm

Megan,
Welcome to the board! You came to a wonderful place full of wonderful mothers!

I do not have any experience with what you are dealing with; however, I do have a 4 yo son with Down syndrome and he experienced some feeding difficulties in the beginning. In Cincinnati, we have a Down syndrome clinic, so I was able to get a lot of help and advice from them. We also had the MR/DD program that offered feeding clinics and I enrolled Cal in this as well. The only advice I have for you is to continue doing all the things you think will help and have patience. The one thing I have learned from Cal is that I need to have LOADS of patience. Just when you think you can not do anything else they will surprise you. It gets EXTREMELY frustrating at times, but things will work themselves out. Sounds like to me that Abigail has the best parents she can possibly have. That is the first step to helping her. Continue fighting and trying different things. Do not except waiting lists. If they tell you they are putting her on a waiting list call them ALL the time! NO ONE is more important than your child and her welfare so keep up the fight. Please let me know if there is anything I can do to help. Unfortunately, I have not experienced the same conditions with Cal that you are experiencing right now; but, I do have loads of experience in the Down syndrome department!

Keep your chin up!

Amber

iVillage Member
Registered: 05-08-2004
Tue, 01-10-2006 - 10:59pm

Megan,
I'm new as well...just passing through actually and your message caught my eye. I usually am on the cleft lip/palate board or dev.delays.

My son also has a syndrome trisomy 13...downs I believe is trisomy 21? Anyway, feeding has always been an issue due to his cleft lip and palate (now repaired). Oh, Mitchell is 1 year old. :)

We continue to use the haberman bottle. It has worked very well for Mitchell. With the haberman you have different lines on the bottle according to the flow you want. I suggest playing with it before feeding her so you can get the feel for it. You may also squeeze the nipple a little to "help" her. Of course you have to be careful to not give her too much of a drink and try and coordinate it with a swallow. Do you have early intervention services through the school district? If so, a speech pathologist or OT probably could help or you could get a referral from your dr to see one of them to help you. I only say that because Mitchell didn't tolerate us squeezing at first. But, he was only a few days old. After about 2 months old he was able to accept "help". It really works well for a lot of babies. Many parts to the bottle and a pain in the butt-but it has been worth it for Mitchell. I sure hope it works for you.

Another thing we did for Mitchell was we made the formula have higher calories because he too couldn't take that much. This is something you would have to talk to her dr about though because it can be hard on their system. Norm. formula is 20 cal/ounce and Mitchell gets 24 cal/ounce...we just mix it different. He doesn't have to take as much then. We are still struggling with weight-he had a NG tube in for night time feedings only and we just got it out! Now he really has to work! I can't think of anything else. Is she struggling with breathing at all? Mitchell would get so tired from eating because of his cleft.

I know how you feel though...we didn't know about any of Mitchell's conditions until he was born. Let me tell you, that first few days sucked! Okay-the first few months. Feel free to e-mail me if you have any questions. I'm not sure if I'll be a lurker here or what...not a lot of time. Mitchell has his own website
www.caringbridge.org/mn/mitchelljohncragg stop on in

Take care,
Katie

QV