Frustrated. Time to vent

[happyhopej]

@jsw3883 Not trying to convince you to get a gtube. I was anti gtube because my baby was such a good feeder. But here is how it ended up for us—My baby took full bottles before his respiratory status escalated and couldn’t eat for two months. We got to 1L low flow nasal cannula on a Thursday. They gave him the weekend to get used to it and we attempted PO feeds on a Monday. Completely lost his suck reflex. He was smiling and chewing the bottle and swallowing the milk—so technically no oral aversion but he just couldn’t suck anymore and I was so used to him taking full bottles. I was really down and couldn’t believe it. The very next day (Tuesday) I asked for a gtube so we could go home. By Friday, they did the surgery. They warned me about him being weaker after the intubation but he came back on the same 1L settings! They kept him for another week after the surgery to get him down to 1/2L and we were released the following Friday. So basically after getting to low flow, we were able to go home after two weeks because of a gtube—ending our 172 day NICU journey.

Now that we’re at home, I really miss bottle feeding him. He breastfeeds a little but not enough to make a difference. I give him a bottle 3x a day since he enjoys the taste and chewing on it. We have home speech therapy coming out in a couple of weeks but I also plan on moving on to teaching him to use a cup.

I’m really frustrated for you that your hospital isn’t more supportive though. They actually planned to have us there long-term to work on feeds and we were moved to a private room (only 10 in the whole NICU) but I insisted on the gtube so we could go home. It’s possible to learn—the reflex just isn’t there anymore once they are past 3 months old, but if the speech therapist is good your baby can still learn!

 

[blueberry43]

@jsw3883 Our NICU also wouldn't discharge with an NG tube but other providers and her pediatrician was all for it if she needed it. We experienced feeding issues after she was discharged. She ate fine in the NICU and then the day she went home she started struggling to take her volumes. We ended up readmitted a few weeks after my girl discharged from the NICU and the hospital was all for putting in an NG over a G tube, same thing when we brought up our concerns to her pediatrician about her not wanting to eat. I bring this up because it may help to touch base with the pediatrician she will see or maybe other providers in the hospital she is at. If her pediatrician or another care provider is on board, especially her pediatrician who will oversee her care outside of the NICU then they might be a great advocate to push the NICU for an NG vs G tube with your intubation concerns. NICU runs a very tight ship and we have found that other providers are able to be a little more accommodating (can't think of a better word to use here) to other ideas/treatment plans.

 

[iza]

@jsw3883 I know you have gotten a lot of input already; but wanted to respond anyway - I hope that is ok.

I just wanted to provide another perspective and let you know that I hear you, I understand what you’re feeling, and am not dismissing your concerns; they are valid.

Our LO ended up the g tube route - I’ve spoken highly of it before on this sub.
That said, I fully understand where you are coming from. Our fear was 1. That we were giving up on them eating by mouth and 2. Not being able to be extubated after the surgery.
I also understand that all babies are different, and that everyone of them had different experiences.

Basically, we ended up going this route for a few reasons:
1. We did not believe our LO was ever going to get the “suck, swallow, breathe” technique that babies have. They demonstrated this not only during feeding, but while taking a pacifier. There was a lot of difficulty coordinating
2. Our LO was in for nearly 200 days and collectively it was agreed on that they would thrive at home developmentally, as they were not hitting any development milestones staying in the hospital
3. Our LO weight gain was sloooowwwwwwww. Born at 1lb 4oz, it was important they get every. Calorie.
Having the g tube meant once home; we continued to try the bottle first, g tubes the rest and then started feeding therapy ASAP. We moved to a spoon as SOON as that happened and they’ve never looked back. We’ve only had upwards success with mouth feeding. It just wasn’t going to happen with a bottle.

I wonder, because your LO is older, would you be able to bring in an outside third party opinion on feeding? I’m sorry if you already had and said that, was just a thought that came to me.

You’ve been through a HARD time, sending my best to you, your LO, your wife and wishing you a happy and healthy future

 

[jsw3883]

@iza No worries friend

1. She was taking full bottles at one point before her breathing regressed. So we know she can do it, which makes this so hard.
2. We are at 220 and this is the only reason we are thinking about giving in, just to leave.
3. Our LO is a chonk. Started at 550g and is now over 15lbs and is putting on weight quickly. Which is another reason this is so hard.

And I’ve asked for another opinion and they scoffed at it, we have a meeting with the attending later to discuss but I 100% feel abandoned by the hospital. No one has any ideas outside of their normal feeding playbook and no one wants to break with the party line.

No offense taken with any of this. Your message was kind and appreciated. same to you and your family.

 

[iza]

@jsw3883 I got ya! I can relate then, because our LO was taking bottles too - in a small way, we felt the nurses gave up near the end because “they’re hard to feed” I heard once “this nurse could bottle feed a rock, idk what’s going on”

Like ok. I get it you have other babies that are just grower feeders, it happens. Mine was NOT, and i think in addition to the SSB problems, she was given up on to an extent.

It sounds like you’ve tried it all with hospital admin - do you guys have a patient advocacy department? I had to utilize them once post NICU bc a doc was dodging me.

ETA: have they done a swallow study or upper GI? Maybe there’s a mechanical issue? Just spitballing

 

[jsw3883]

@iza There are two attending groups at our hospital, I’ve requested a consult with the other group if they deny it, patient advocacy is my next step. The other group cared for her for months untill she was moved to the long term breathing unit.

Everyone has given up and it crushes me to feel like we have to keep the weight of the hospital on our backs because no one else believes our LO can do it.

 

[iza]

@jsw3883 I understand keep us posted on how those consults go ️

 

[jsw3883]

@iza Thanks friend.

 

[worship7]

@jsw3883 Suggestion, which you can take or leave...call your health insurance company member advocate. They were the most helpful to me in our journey. I know the NICU you're at is scoffing at a second opinion, but they don't own you or your child. You can potentially transfer if you feel they aren't doing all they can.

And it's really crappy you have to deal with this, I'm sorry. Glad baby is still a chonk.

 

[jsw3883]

@worship7 That’s actually a good idea. Thank you didn’t think about as a person to contact.

 

[worship7]

@jsw3883 Hope they help you

 

[onegirlinchrist]

@jsw3883 I have a BPD baby who struggled with extubation too. Also has a looming surgery that requires intubation and it terrifies me too. They never tried bottle feeds, he has a GJ tube, and honestly, if I could have avoided it, i would have. Being home with a cannula and GJ is a lot. You have every right to want them to be able to take a bottle. Especially since they’ve done it before. Not having a G tube It will be one less thing to manage when you go home. But if it is the case, you didn’t fail. I know how it feels to fight at the NICU and it feels like we lose a lot. All you can do is keep trying. Hoping for the best for you all.

 

[sableng99]

@jsw3883 Hi friend, I'm so sorry you aren't being heard properly by the medics. It looks like some here have signposted some useful places you could get some support from. I hope you get some sound advice from them, sorry I can't add much as I'm not based in the states. Your LO is very lucky to have parents advocating so much for them. Wishing you the best.

 

[sawco]

@jsw3883 Hi I’m sorry to hear that your going through this! Is there a better nicu in the area you could be transferred too? Maybe they have better support or have more experience?