London Moms Home

tinad · 03-02-2010, 08:23 PM

So my DD is now 11 months old (8 months corrected) and I have had a hell of a time feeding her from the day I brought her home from the hospital. She screams whenever I tryed to feed her and she throws up 6x average a day. Our Dr. kept giving her meds for REFLUX but I kept telling her everytime we went that they were simply not helping. Her vomits were usually mucus. Or she would gag and spit up during her bottle.
I have brought her to many many people for help and finally just last week she had a Barrium Swallow Test. Well guess what she is aspirating her fluids (a bit of the fluids were entering her lungs). It completly explains all her problems.
1) She would spit up during her bottle because she was coughing from bringing it into her lungs.
2) The lungs were creating mucus to deal with the fluid and causing her to vomit mucus.
Has anyone else had this issue with a premie? I'm really worried about lung damage since she already had bad lungs from being so early.

Marvin · 03-02-2010, 08:32 PM

Hugs. Neither of my preemies have this issue. (My DS has bad lungs, but never really spit up. My DD spits up a lot, but feeds fairly well.)

That is a long time to deal with this without answers. Hopefully now that you know what is going on you can get your DD feeling better. Has she ever developed pneumonia from aspirating? That may have been a tip-off to the docs about her situation.

Happily Ever After · 03-02-2010, 09:19 PM

Hugs! Sorry to hear.. the last thing you need is more issues. I am so glad that you were finally able to find something out.
DD has vomiting issues but her's is due to a oral hypersenstivity and a high gag reflux... nothing with lungs however..... are you still on the facebook group from the NICU (I believe you were?!? Tammy started it??!).... someone might there might have gone through it as well. I know one girls' DD had reflux issues.
Good luck!

Tan5kids · 03-02-2010, 09:47 PM

MY twin nephews were born at 25 weeks and one of them has a paralyzed vocal cord and he has even at almost 3 some vomitting issues, When he vomits , he expells his entire stomach contents. IT has gotten so much better in the past 8 months and now he only does it 2-3 times a month. When he does this he actually has to eat his whole meal again

poor guy. They have never done a swallow test on him, I wonder why ??

I'm hoping your DD is okay. My SIL is on here very rarely , her user name is BaxterBoys.

tinad · 03-02-2010, 10:34 PM

Quote:

Originally Posted by Marvin

Hugs. Neither of my preemies have this issue. (My DS has bad lungs, but never really spit up. My DD spits up a lot, but feeds fairly well.)

That is a long time to deal with this without answers. Hopefully now that you know what is going on you can get your DD feeling better. Has she ever developed pneumonia from aspirating? That may have been a tip-off to the docs about her situation.

Thanks ladies for the replies. The funny thing that baffiling the specialists now is that she has never had any lung infections. They said its very strange, but even my feeding specialist reviewed the test today and saw the aspirations. We have been so lucky since our release DD has not even had a cold.
I can put up with the puking and screaming but I am just so worried about those poor lungs.

tinad · 03-02-2010, 10:38 PM

Quote:

Originally Posted by Happily Ever After

Hugs! Sorry to hear.. the last thing you need is more issues. I am so glad that you were finally able to find something out.
DD has vomiting issues but her's is due to a oral hypersenstivity and a high gag reflux... nothing with lungs however..... are you still on the facebook group from the NICU (I believe you were?!? Tammy started it??!).... someone might there might have gone through it as well. I know one girls' DD had reflux issues.
Good luck!

Thanks, my DD has a high gag reflex and oral hypersensitivity too. She constantly scares the poop out of us when she puts thing in her mouth and does that super loud gag. This has not helped with the puking either but she is getting better since we bought her a baby banana brush.

ButterflyEffect · 03-03-2010, 07:55 PM

Some moms have better luck when the food is thickened. You may want to talk with her dr. about that. Liquids are much harder for the body to swallow than thicker liquids or foods because so much co-ordination is necessary so quickly.
My dd aspirates frequently as well and has always been solely tube fed. She has a hyper gag, poor swallow and a severe oral aversion.
She was ftt for her first 3 years or so because of her severe GERD. She vomitted all through the day and all night (literally).

tinad · 03-03-2010, 08:14 PM

Quote:

Originally Posted by ButterflyEffect

Some moms have better luck when the food is thickened. You may want to talk with her dr. about that. Liquids are much harder for the body to swallow than thicker liquids or foods because so much co-ordination is necessary so quickly.
My dd aspirates frequently as well and has always been solely tube fed. She has a hyper gag, poor swallow and a severe oral aversion.
She was ftt for her first 3 years or so because of her severe GERD. She vomitted all through the day and all night (literally).

Wow sounds just like my DD. They tried the thickened liquid during the test and only had a tiny bit of aspiration so their recommendation was to thicken it. I got some thicken-up samples but the liquid won't come though her nipple (she uses a haberman if your familiar with it). We were told a tube may be necessary. We'll see what comes of the Drs visits. How old was DD when she got her tube?

ButterflyEffect · 03-04-2010, 03:00 PM

She has been tube fed since the day she was born. She had an ng first and then a g was placed when she was about 2 1/2 months. She has never taken anything orally yet, we give her tastes (a drop on the end of my finger) but she gags pretty bad. She has gotten better as she used to vomit with tastes.

tinad · 03-04-2010, 07:17 PM

Quote:

Originally Posted by ButterflyEffect

She has been tube fed since the day she was born. She had an ng first and then a g was placed when she was about 2 1/2 months. She has never taken anything orally yet, we give her tastes (a drop on the end of my finger) but she gags pretty bad. She has gotten better as she used to vomit with tastes.

I am having the hardest time with tastes too. As soon as she smells it she gags and throws up. We do ok for cereal but anything that has more of a taste than that and she loses everything in her stomach. I feel like such a bad mom for not being more persistant with tastes but its just hard enough to get her bottle in her. I try letting her have little tastes too but only on her terms.

animalwuman · 03-06-2010, 09:05 PM

We had a similar issue with our DD. She would have little “pokes“ when she swallowed (into the wrong tube) and then the food would go back into the right tube and down into her stomach. The thickener helped IMMENSELY and we saw a difference within a few days. Although we didn't have the puking as much as gagging, she vehemently protested food until 7 months (we basically force fed her as I wouldn't allow them to put the tube in - stubborn eh?)
Anyway, eventually we also found out that she had been born with CDH that had escaped doctors ultrasounds, etc until she was a year old! Her stomach, intestines, and spleen would poke up through a slit in her diaphragm causing her lots of pain and pushing her lungs and heart over to one side of her chest. The doctors told us that a. babies usually die at birth with this condition as their lungs don't develop normally and b. it could have been the cause of her eating problems (on top of the GERD and swallowing problems.)

all I'm saying is that it pays to keep looking for the problem. If you're not satisfied with the diagnosis or you have a feeling there is something more, don't ignore your mother's intuition!

big hugs to you and your little one. It does get better!

tinad · 03-06-2010, 10:52 PM

Quote:

Originally Posted by animalwuman

We had a similar issue with our DD. She would have little “pokes“ when she swallowed (into the wrong tube) and then the food would go back into the right tube and down into her stomach. The thickener helped IMMENSELY and we saw a difference within a few days. Although we didn't have the puking as much as gagging, she vehemently protested food until 7 months (we basically force fed her as I wouldn't allow them to put the tube in - stubborn eh?)
Anyway, eventually we also found out that she had been born with CDH that had escaped doctors ultrasounds, etc until she was a year old! Her stomach, intestines, and spleen would poke up through a slit in her diaphragm causing her lots of pain and pushing her lungs and heart over to one side of her chest. The doctors told us that a. babies usually die at birth with this condition as their lungs don't develop normally and b. it could have been the cause of her eating problems (on top of the GERD and swallowing problems.)

all I'm saying is that it pays to keep looking for the problem. If you're not satisfied with the diagnosis or you have a feeling there is something more, don't ignore your mother's intuition!

big hugs to you and your little one. It does get better!

Thanks for this. Did your DD have any chest infections or show any sickness other than the feeding problems?

barkingboys · 03-12-2010, 10:13 PM

This sounds a lot like DS's issues. He is also tube fed and has been since birth due to medical issues. But whenever we do swallow studies it always shows he has aspiration issues/concerns. He is doing oral trials but they were only restarted recently. He is not a preemie but has lung issues due to one of his medical conditions. He has had several pneumonias now but they have generally come at the same time as his colds. He has cloudiness in his lungs which hasn't been explained to my liking yet. We too feed at a slightly thicker consistency. I keep hearing about the thickening stuff but it was never suggested for us. The one major difference we have is that he has no oral aversions and is very eager to feed...it's just too risky for us to do too much. He is also on reflux meds. Has anyone spoken to you about doing chest physio with her? We've found it to help out a lot with DS. Hopefully you can get (or better yet already have) a speech and language pathologist and a GI doc might be handy too. Good luck!

animalwuman · 03-13-2010, 08:48 AM

We (thankfully) never had any chest infections but we were warned about it as that would indicate the need to thicken the food more. We also had an OT working with us, dietician, GI doc, allergist and GP. It truly took a village with this little one! Big hugs to you as you figure out what works with your LO!

Urbanmom · 03-30-2010, 11:32 PM

Hi all,
I was just reading some of your threads and I can relate to feeding issues, aspiration and oral adversion. I have a six month old little guy whom has two congenital heart defects. We have been through what seems like all of the issue's brought up here. He was aspirating on thin liquids and was quickly moved to formula mixed with rice cereal as he was aspirating on the thicken up as well. We recently got him off the N.G tube and have been though the mill with the oral adversion, reflux, vomiting...the works. I just wanted to say that we had difficulties finding a bottle and nipple that was good for the thickened feeds, I found the Dr.Browns Y cut nipples are the best for allowing the feed to come out at a good rate. I am here if anyone is stuggling with feeding, feel free to message me. I know it was an emotional rollercoaster for us.