how long on the feeding tube? sign of brain damage?

Dani816

hi everyone,

our little girl was born at 37 weeks due to severe IUGR (small placenta, but we don't know the cause). her only issue right now is that she can't take a full bottle and has to be fed with a tube. she can maintain her body temperature and is gaining weight appropriately. the blood tests and ultrasound showed no infections or abnormalities of brain structure.

the bottle thing seems to be mostly an issue of stamina because she is able to take SOME of the bottle each time. however, it's been 11 days now, and the doctors have raised a concern about brain damage or even cerebral palsy because she also presents with some "hypertonia" (she appears very rigid at times, although not all the time). they feel she isn't developing appropriately for her "age."

my gut instinct is that she's just a tiny, stressed infant who needs time to relax and develop. the drs are concerned and ordering an MRI for next week.

do any of you guys have any experience with this? how serious of a delay is this inability to bottle feed? how long did it take your little ones to get the hang of it?

thank you! and best wishes to everyone.

TriciaJoy

Our situation was very different (26 weeker who didn't get to attempt to eat until close to 37 because of his oxygen needs) so I can't really answer some of that.

BUt I did want to offer some encouragement. My son was born was a congenital stomach defect which caused a great deal of pain with eating and eventually had to have a G-Tube placed in his stomach. He's 2 now and still has it. He does not have any neurological damage that we are aware of. He was behind in his milestones for a while but is now caught up in almost every area except feeding and speech. 

Basically, what I"m telling you is that while feeding difficulties are extraordinarily frustrating, they can absolutely be managed even in much more severe circumstances than what you're describing. 

As for my son, once he started bottle feeding, it took about 10 days, but he started quite late and really, he went from no more than 3 bottles/day (that he didn't always finish) to eating 100% by mouth literally overnight. (the stomach issues caused him to stop eating at a later time.) 

Sometimes they just get it very suddenly. It's certainly a good idea to know what sort of medical issues you're dealing with, but in the end, patience is what is almost always required. It sounds like you really have your head on straight about it.

lemen99

Sounds familiar...

Andrew is a former 26-weeker.  He was 110% ready to go home, at his due date, but would NOT take bottles. He acted like he either didn't know what to do, or, that he was too tired.  They started to mention that potentially it was a mental problem (He did have a head ultrasound confirming level 2 and 4 iVH because he was so early) and I got really scared.

Long story short - it just turned out to be really severe reflux.  Once they figured that out, and he was treated, he started eating and was on his way home 3 weeks after his due date.

I hope you find a clear answer such as this and that your LO is home soon!  Hugs.

FisMom

With my DD, it seemed like it took forever to get the feeding thing down. She was born at 31 weeks and came home at 38 weeks. She didn't take all of her feeds by bottle until less than a week before she came home. Before that, she was on a pump that feeding her over an hour and a half. I thought she was really behind, but it just took her longer to get it.

The doctors might be concerned because at her gestational age, most babies are eating on their own. However, all babies, especially preemies, develope at their own pace.

Big hugs and let us know the results of the MRI. Don't be afraid to tell the doctors that they are freaking you out.

Rachel&Joe

you know, i think it's so jerky that they seem to jump on the brain damage thing alot.  my DD did not want to eat either & instead of testing for reflux, they thought it might have been some kind of brain issue, though her head u/s was always clear.  as it turned out, she was really allergic to milk (taking my BM but with a milk based formula added in for extra calories).  once we figured it out, she was fine.

yes, it's possible that your baby has CP but it's much more likely that she is a newborn & she is tired & doesn't quite have the feeding thing figured out.  It takes a while!  it's not easy!  i know alot of full termers that don't feel like eating either in the beginning.  hang in there.  have faith in your baby.  she will amaze you.

XOXO

LuckyMom0203

Oh, please... if every baby in the NICU who seemed rigid at times was diagnosed with brain damage, we would be in a lot of trouble.  Chin up, Dani, I'm sure you have nothing to worry about.  All babies go at a different pace (especially preemies).  My baby had to be on a feeding tube for quite awhile and then once she got the hang of the bottle, she just took off.  In a matter of days after that, she was home.

As for the CP/possible brain damage scenario, please take what the doctors say with a grain of salt.  Some of them have no idea how terrifying those words are and just throw them around.  We were told that my daughter had significant brain damage when she was born (PVL) and would likely have severe cerebral palsy.  However, a few months later right before she was discharged, they completely changed their prognosis saying that she looked great and never had any PVL.  She's six months old now and has no signs whatsoever of CP.  She just had all her developmental check ups and is right on track.

Also, one last thing... your gut instinct about your baby is key.  You know your baby.  Let her be your biggest comfort and reassurance and you'll be fine.  Hang in there!

sdtchica13

Feeding was the hardest thing for us too! LO was born at 29w, 6d and was completely breathing on her own, maintaining a body temp and maintaining a good saturation rate by the 33w, 5 day mark and still didnt get to go home until the 38w, 5 day mark due to feeding issues. We started trying to give her a bottle at 35 weeks and she didn't fully get it until 38 weeks. She would fall asleep in the middle of a bottle or her heartrate would skyrocket because she would choke. The NICU staff kept reassuring me that feeding is the hardest step and that there was absolutely nothing wrong with her other than stubbornness (I think she gets that from me, lol).

Don't let the docs stress you out! Just keep trying like you have been doing, and LO will get it. Its hard because you know there is a light at the end of the tunnel now and this last step feels like its taking forever, but it will come!