Hellobee Boards

Oh my gosh, what a difficult situation. I don't have any knowledge about it, but I just wanted to send you a huge hug and lots of strength as you go through whatever is ahead for your LO and your family.

I'm not a medical personnel, but I'm surprised by this. When we were in the NICU with our boys, they seemed to expect them to have temporary delays and set backs and encouraged us to not be discouraged if something wasn't happening as soon as it seemed like it should, and they were born at 36 weeks! I'm not sure how the injury would play into it all, though.

I hope someone with more knowledge than me can give you some feedback. I'm so sorry you're having to think about things like this right now. I can't imagine how scary it would be to hear those statements. Sending good thoughts and prayers your way!

Whoa, whoa, whoa! This seems a step too far too soon. Your baby isn't even term.

First, are you at a level 3 NICU with all the experts who can make the best assessments?

Second, does the baby have no gag? That would be an ominous sign.

Third, profoundly impaired babies still go home. They can place an NG tube and you can feed that way at home while their still sorting out the trajectory. Ventilation would be another issue, but sounds like your little one is breathing on his own, right?

What does the imaging show with respect to brain? Hemorrhages? Other abnormalities?

All of this, frankly, is moot while the child is too small to regulate temperature on his own and isn't yet at a weight adequate for home! Feeding by mouth is not a pre-requisite for home in babies who have known neurologic impairment. This doesn't mean we give up on them!

Please note: my questions and my general comments should not be seen as medical advice.

No advice, just hugs..

I would second all of what Mrs Jacks said. I am wondering what your LO's nurses think of the suck/gag reflex (we have been known to have different opinions that PT sometimes, and I know we have had luck at our hospital feeding babies by mouth that PT said wouldn't).

It is pretty early, but at the gestation your LO is at you would expect them to be fairly successful at oral feeding, in absence of the neurological compromise that your LO has had.

I feel like there must be something else at play, because you could take your LO home with tube feeds and home oxygen (through nasal prongs) and home suction, because the idea of some kind of long term care seems abrupt at best at this point. It feels quite premature. I do know that both of the NICU's I have worked at prefer to transfer babies to paediatrics or a children's hospital when they are over 40 weeks, and not keep them there past term.

You can feel free to wall post me if you want to chat more. I have worked as a RN in NICU for 7 years.

Our NICU kept babies past term. My lo was there until about 5 weeks adjusted. They transfer to peds or children's eventually.

I hope that your lo just needs a bit more time, but definitely know that there are a lot of different personalities and perspectives in the NICU. When you find a nurse or doc or PT that you like, seek them out for opinions and/or ask for specific nurses to be assigned to your lo. I remember feeling like I didn't know even what I should be asking about...the docs are experts. But even docs make mistakes or have differing opinions. So get lots of them!

And come on here for support as often as you need to!

I have no advice. Just sending thoughts abd prayers your way.

No advice, but thoughts and prayers for you and your sweet little one!

thinking of you and your baby!

@beaker: I'm so sorry you're going through this. You spend way more time with your LO than the doctor, and it sounds like he is making great improvements already! Keep being an advocate for your LO (which you're doing an amazing job at already!) and don't be afraid to seek out second (or third) opinions when the course of action seems "off". Hugs hugs hugs. I hope things continue to improve and your baby comes home soon.

@beaker: Ok, then let me add that feeding was sooo difficult for us and was the ONLY reason we were in the NICU for so long. He started bottle feedings at 34 weeks, but would take 2mls or 10mls or 5mls, not nearly enough. At the beginning we only did 1-2 bottle feedings a day so he didn't get too tired. He almost always desatted during feedings either because he forgot to breathe or he choked.

We tried a million different variations of how to feed, but eventually thickened feedings (we used Enfamil AR...even though I had plenty of breast milk...that's what he liked) and went ad lib (instead of a schedule).

It was extremely frustrating, but eventually he came home and although he's not a big eater, he is consistently gaining weight at almost a year actual.

I think it sounds extremely early for your doc to even mention chronic care as a possibility! 34 weeks is the earliest bottle feeding can even start. Give the kid a break! I wish you lots of patience and luck!!

@beaker: Thank you for sharing pictures! He is so perfect . I have been thinking of you and your family since your birth in progress thread. I haven't had anything helpful to add but I hope that things continue to get better for you and your little guy!

Omg he is so sweet. And to add another positive story - one of my coworkers has twin grandsons who were born at 24.5 weeks and they just turned 3. I can't say they had an easy road but they are now happy, and thriving amazingly cute little boys.

I'll definitely be keeping you guys in my prayers. Hugs Momma!

Prayers for you and that precious babe!!

I just wanna send you a huge hug! I pray that your baby will be able to come home healthy.

@beaker: how often is he requiring suctioning? If its more than once an hour, that's pretty onerous, but I do know plenty of moms who do somewhat frequent suctioning at home. No one is going to better attend to your son's needs than you, right?

@beaker: I hope it gets better too, but I think it's also wise to prepare in case it doesn't. This is tough stuff! I hope you run into your favorite doctor soon so that you can get a different perspective!