Frustrated. Time to vent

[jsw3883]

So you all know me..if you don’t look at my post history we’ve been at this for 230ish days.

Our LO is back on cannula after a bunch of cpap round and we are trying to start feeds again. After so many false starts I can’t help but be worried she’s never gonna get this. She was taking close to full bottles months ago and now she can barely take 10ml’s.

The prospect of a gTube terrifies me, not for the surgery but the intubation. Last time was terrible for her, it took days to get off, she needed decadron. And I just don’t want to undo all the work we’ve been doing to treat her BPD.

They don’t send kids home with NG’s so we are caught between a rock and a hard place. The hospital is zero help for feeding and it seems like all the know how to do is place a gTube.

We moved closer to the hospital this week to try and increase our bottle attempts and it has been a disaster. I’m over all of this, I can feel the gTube mafia circling and I don’t know what else to do here but to give in which feels like giving up.



Edit; if you are apart of the gTube mafia, kindly don’t respond. If you respond to a grieving father with sass, you aren’t needed here.

 

[archhumanmichael]

@jsw3883 My baby has a gtube and I felt like she would never eat by mouth. Her oral intake has increased so much since we’ve been home (5months). She nurses on demand and is eating purées. She won’t take a bottle and needs the extra calories which is why she has the tube in. It’s what she needed in order to come home and has provided her the extra calories that she needs and won’t take by bottle. Don’t lose all hope for your baby!

 

[jsw3883]

@archhumanmichael Not losing hope for the child, losing hope in her not being subjected to another risky intubation due to our hospital abandoning us in our feeding journey.

 

[fleurrobson]

@jsw3883 Hey OP. I’m days late here, I apologize. I have a teenaged 27 weeker with BPD, who took two months to get off the vent, who spent 222 days in NICU, who I finally relented and allowed to be re-intubated on day 197(ish) to get a g-tube, which finally allowed us to be discharged from NICU with a bipap machine and an oxygen compressor and nebulizers and nurses at home.

That 27 weeker is 13yo now, still on nighttime oxygen and daily puffers, still readmitted for weeklong PICU adventures quasi-annually for a cold turned pneumonia. She caught RSV when she was 6 and earned a new acronymed diagnosis, this one progressive. She sits out most gym classes. She also aces all of her exams, is fluent in two languages, is an amazing digital artist, and plays the viola. She just happens to also have a lung disease.

What she doesn’t have any longer is her gtube. Lost it before her third birthday, eats five tacos in a sitting, loves Thai food, the spicier the better. She outeats me just about every night. Loves to help me cook every cuisine you can imagine.

I don’t mean to sound like the gtube mafia right now but it really sounds like you and I have walked similar paths and I’d be happy to hear your concerns and share my experiences. I used to keep a blog back then and I remember writing about how opposed to the surgery I was and how scared I was to have to re-intubate her. The blog posts I wrote back then are raw emotion in the moment, and now she’s a teenager and I have had space to reflect.

I’m sorry, truly, for the wall of text and the opinion you didn’t ask for. I have an ear full of empathy if you’d like to DM me for conversation or for the links to the blog posts. Good luck to you and your babe.

 

[jsw3883]

@fleurrobson Your love and compassion can be read with every word you wrote

In the 10 days we’ve moved through the stages of grief and are planning the GTube procedure when she is a little stronger on cannula.

Thank you for responding even days later.

 

[ahmed360]

@jsw3883 A g-tube is not giving up!! And it can certainly just be temporary. Don’t dismiss it when it is possibly what is best for your baby - with the added bonus of getting to go home. But please do not think that doing what is best for your baby is giving up. It isn’t at all giving up, just shifting the fight. That’s it. You got this, and so does your LO