Frustrated. Time to vent

J

jsw3883

New member
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.
 
@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 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.
 
@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.
 
@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 💜
 
@ahmed360 While I appreciate your input, it is giving up.

Admitting defeat, we lost. We can’t feed her without 1 more risky medical intervention.

It’s a failure of us, the hospital, and the medical establishment that we can’t fix this without punching a hole in the stomach of a child.

This is a failure. Just because everyone says it’s normal and ok doesn’t make it so.
 
@jsw3883 That’s a pretty terrible mindset. I get you’re feeling sad about things not going the way you want them to, but to call this a failure is awful. Would you call your child a failure if she cannot do something no matter how hard she tried? Probably not. And you’re not losing at anything. You’re having to readjust expectations and learn a new normal, but one that could be temporary. The only failure would be if you allow yourself to wallow in pity of it not working out how you want when you want. Be sad for a minute, then kick yourself in the pants and be the parent your baby needs. She needs an advocate, and you can’t be that person if you call giving her something needs a failure.
 
@jsw3883 Our son was down to 0.1 in the nicu and had a hernia repair and went home on 0.2 because they used the wrong size tube to intubate. We had finally gotten him off daytime oxygen and just used 0.1 to sleep after 5 months.

He was diagnosed with a hepatoblastoma a week and a half ago and has been intubated twice in that time for a biopsy then a gtube/port for chemo. He came back on 1 L and as of yesterday has been off both day and night! We didn't have an option for intubation but he handled it so much better with both this time. They did say they read thr notes from what went wrong the first time and took a slightly different approach.

For what it's worth, he was completely bottle fed before the gtube but due to the chemo his feed volumes have been decreasing and they already had to put him under for the port
 
@jsw3883 Why don’t they send them home with an NG? My daughter is being discharged the end of this week with an NG tube and tomorrow they’re teaching us how to care for it and put it back in if she pulls it out.
I’m sorry you’re experiencing this and that’s a long time. I wish there was something I could do or say to help
 
@thetravisludwig No idea, we’ve got a meeting with the attending about it but they have expressed this isn’t a negotiation. So they are holding my daughter hostage. They’ve been zero help feeding. OT/PT/medical team just keeps telling us do put her sideline and she’ll get it. No one can think critically. So we Risk a gTube surgery or keep her there destroying the last little bit of mental health the parents have and watch her get more and more behind developmentally.
 
@jsw3883 That sounds beyond frustrating. Maybe ask for a patient advocate or case manager. Seems pretty ridiculous to force a surgery for the g-tube when an NG would work just fine. Hoping for the best for your family and babe!
 
@jsw3883 We have twins boys who stayed in the NICU 152 days each. Boy A has a severe Coarctation of the Aorta, has to be on constant air, oral aversion and bad reflux. Boy B, oral aversion and bad reflux, he would have an emesis every feed if not 2x every feed. In regards to Gtube, both boys went home last week on Gtubes. Boy A is still awaiting heart surgery, is home with Gtube, breathing tank we take everywhere and of course we have to have a pulse oximeter, he’s pretty full of wires/tubes, Boy B just has Gtube. I fought the NICU as much as I could trying to not get the Gtube, but after trying multiple formulas, dosage rates, changing feeding time, doing everything we could think of, we decided it was time and got the Gtube for both. I will say it is a lot of work for twins. Boy A also has about 8 medications including breathing treatments, so along with Gtubes it keeps the house very busy. NICU rules are generally that they don’t send children home if their feeds by mouth are less than 50% of their feeds. As they want to ensure your child is going to get the nutrition they need. There is some circumstances where the doctor will allow it, we almost went home on them as well, but we decided not to after seeing a few times how a bad NG placement can go and the pain it can cause them, so we went Gtube route. We didn’t have any luck or any progress with Speech in the NICU, they do their job, but if the baby isn’t taking anything, they don’t push it, so unfortunately in a lot of cases, Speech isn’t great imo if your child has oral aversion. Boy A also had scary situation with surgery and taking awhile to come out of his deep sleep, but as he gained weight his 2nd surgery was better and he recovered same day. So hopefully your little one will have a better 2nd surgery if they need the Gtube placement.
 
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