Oral Aversions

[Lindsay1234]

My dd2 (full term babe) has been in the nicu for almost 5 weeks and been eating through a tube in her nose. After surgery (hopefully next week) she will be learning to eat with a bottle/breast.
Any advise? Experiences? She doesnt want a paci right now and has a light suck. If she cant/wont take a bottle, I get to take her home w a feed tube in her stomach and I really want to avoid that!!

[Sandstress]

Can she go home with the tube in her nose? Are they going to keep her if she's not eating by mouth? I took my DD home with the naso-gastric tube and it stayed in for another 2 weeks. She was not the best eater. Does the surgery have something to do with her eating or is it related to something else?

[Lindsay1234]

Originally Posted by Sandstress

Can she go home with the tube in her nose? Are they going to keep her if she's not eating by mouth? I took my DD home with the naso-gastric tube and it stayed in for another 2 weeks. She was not the best eater. Does the surgery have something to do with her eating or is it related to something else?

If she goes home with a tube it will be through the stomach from what Ive heard. They will keep her after her surgery (heart surgery to correct a defect) for a few weeks to try and teach her to eat. She was on a ventilator for the first 2 weeks and gets suctioned out several times a day, a good reason for aversions! They will start a bottle after surgery because they said that she would "forget everything she learned" if we did it before surgery.

She DID suck on a paci today for a min or so, so maybe it wont be so hard?

After your dd got home did she start taking a bottle/breast after those 2 weeks?

[Sandstress]

In the NICU, she was taking 6 of the 8 bottles a day by mouth and working toward getting rid of the tube when we went home. I got her taking more by mouth in those 2 weeks, so it wasn't all done at home. We had one nursing session at the hospital, and then it wasn't really successful at all after we went home. I ended up Eping. You are in a different situation with the heart surgery (mine was just early). It sounds like may not be able to handle getting all her nutrition by mouth by the time she's ready to go home? Hopefully if you need the tube, it won't stay in for very long.

[Le Bec]

One of the best things we did with Erin was to introduce gentle touching to her face when she could handle light touch. We did it while she was in the NICU and when she was tube fed last year.

[Lindsay1234]

Weve been lightly rupping a finger or a paci on her cheek a and putting a few drops of milk into her mouth at the same time lately.

In a shocking turn of events, we went to see her this mornig and she was sucking on a paci! Like REALLY sucking! I still expect this to be a long road though.:

[sbrinton]

I would encourage you to keep doing what you can to give her positive oral experiences. It sounds like you are doing the right things. When you are able, doing kangaroo care and letting her lick or nuzzle your breasts can be another really soothing, positive experience.

At the NICU where our boys were hospitalized, the nurses are moving towards a policy of doing something soothing to sort of compensate for every painful thing these babies experience. What they can do really depends on the age and development of the baby. And obviously the nurses invite parents to do as much of this as they can. I think it's great to try to learn what your baby enjoys. My middle son loved having his feet rubbed (their poor little feet get poked so much!). Our youngest really enjoyed holding my hand close to his face. Once the boys were breastfeeding, the nurses did most painful procedures while they were feeding because this minimizes the baby's perception of pain. If the baby is able to suck on a pacifier, you could also try the sweeties (pacis filled with sugar water) during procedures. This also helps the baby feel less pain during a procedure.

Keep up the good work...

[Earth Momma]

my little miracle was 5 wks in the NICU, went home with a G-tube and feeding pump.....He's a cardiac patient and they anticipated feeding issues... we saw a therepist who taught us oral stimulation exercises that we did around every diaper change (so alot) these helped to strengthen the muscles around his mouth, jaw, lips, tongue, etc. it also kept "things" in his mouth so he never developed an aversion to things in his mouth....he wasn't cleared to eat by mouth until 3 months it was a long hard transition but he finally nursed and continued until 22 months!!!

I can't remember if it was an occupational or speech theropist but start asking!!

as a side note - we recently met a family with the same cardiac condition, their child is 6 and will NOT put anything in his mouth - is feed exclusively by G-tube! We feel so greatful!

good luck

[Lindsay1234]

Originally Posted by Earth Momma

my little miracle was 5 wks in the NICU, went home with a G-tube and feeding pump.....He's a cardiac patient and they anticipated feeding issues... we saw a therepist who taught us oral stimulation exercises that we did around every diaper change (so alot) these helped to strengthen the muscles around his mouth, jaw, lips, tongue, etc. it also kept "things" in his mouth so he never developed an aversion to things in his mouth....he wasn't cleared to eat by mouth until 3 months it was a long hard transition but he finally nursed and continued until 22 months!!!

I can't remember if it was an occupational or speech theropist but start asking!!

as a side note - we recently met a family with the same cardiac condition, their child is 6 and will NOT put anything in his mouth - is feed exclusively by G-tube! We feel so greatful!

good luck

Whoa! Similar situation!! So we are home now (after 12 weeks) and we have a gtube. We finally figured out that she doesnt have an oral aversion, she has a milk aversion! Weeks of being NG fed and the puking it ALL up made her dislike the taste of milk. She will NOT breast or bottle feed. She loves the paci, loves chewing on a toy or my fingers and even her fingers!
Shell be starting the feeding clinic soon and I hope that when she starts eating real food, she will Want to eat.
I also felt pure relief when she started taking the paci. Knowing that she didnt mind having things in her mouth made the gtube seem really...temporary.
Your lo learned to nurse and successfully?! That is such an inspiration!!!!!!::

[Earth Momma]

I'm so happy that you are home - doesn't it make all the difference! people pat me on the back all the time about him BFing, but really it was him, he's so special - a fighter. I'm sure your DD is too. Keep up the good work Momma!

hey does she still have a Gtube or have they switched her to a button?? if not ask about it. It was around 12 wks when DS was switched - it's much easier to clean and use!

[Lindsay1234]

Originally Posted by Earth Momma

I'm so happy that you are home - doesn't it make all the difference! people pat me on the back all the time about him BFing, but really it was him, he's so special - a fighter. I'm sure your DD is too. Keep up the good work Momma!

hey does she still have a Gtube or have they switched her to a button?? if not ask about it. It was around 12 wks when DS was switched - it's much easier to clean and use!

Mickey button on Monday!!!!! One of the nurses did a mcguyver move and rigged a long tube with a mickey tubing(with a med port and a feed port) and it hangs down about 18 inches from her body. Itll be nice when we dont have a tube hanging everywhere!