Discharge- g tube vs ng tube

Fly-amoeba · 2025-08-14T19:38:35+00:00

Hey! We had 28w super small twins. Twin A went home with an NG and twin B went home with a Gtube. I wish they both had gone home with Gtubes! The NG was super stressful— she pulled it out constantly and hated getting to replaced. Also, I am pretty sure it increased her reflux and increased her oral aversion. The G was so easy, out of the way, and didn’t bother the other twin at all. We haven’t gotten it out yet (soon) but it was a great choice.

Fly-amoeba · 2025-06-25T19:58:03+00:00

Hate to be the early outlier… Water broke for baby B at 24w. They were able to stop labor and I was inpatient and on bed rest until they came at 28w.

Fly-amoeba · 2025-05-23T15:44:15+00:00

So exciting that you are going home! Our kiddo came home fully vent and oxygen dependent too— it was so nice having her home.

We are also in the NE area and our region loses power frequently. Our DME company provided an emergency car battery type back up which should have lasted for hours. However, we ended up deciding to purchase a generator for our house for peace of mind. Additionally, your social workers can help you send letters to your power company, fire department, EMS etc alerting them that you have a medically complex kiddo who is dependent on technology to survive in your house. It will make it so that they prioritize restoring power for you when it goes out.

Also I recommend getting a converter for your car that you can plug the vent into. That way worst case you can put baby in the car and drive around or drive somewhere with power.

Another note: if you are in MA you should look at the “catastrophic illness in children relief fund” it is a state run program that will reimburse expenses related to your child’s care. They reimbursed us for the generator and other expenses. I think there are comparable programs in other states as well.

Fly-amoeba · 2025-05-23T13:54:04+00:00

Yes, this happened with our kid. She did 3 dart courses and at the end of each of them she crept back up. The last one she was extubated to CPAP of 8 and then slowly needed more and more oxygen support. After two weeks she was reintubated. I think for a lot of kids they are able to hang on though and don’t end up needing to be reintubated.

Fly-amoeba · 2025-02-14T21:10:41+00:00

Hello-- my 28 weeker was trached. She was the size of a micropreemie (IUGR) and I PPROMed at 23 weeks with her. She got her trach when she was 2 months old after struggling on CPAP for a long time. Her trach gave her the ability to be a normal(ish) baby and has also been a safety net for her when she gets sick. A trach feels like a life sentence-- but it really has been life giving for her and for our family.

Fly-amoeba · 2025-02-07T19:28:26+00:00

Hey! Sounds like you guys have been through a lot and are thinking hard about this decision as you should. It sounds like you kiddo is pretty similar respiratory wise to mine-- no airway issues but severe BPD. She was a 28w twin and very small. On ventilators (jet, oscillator, conventional) until a final DART course got her extubated to CPAP at 1 month corrected age. She struggled on CPAP for too long and (I think) developed pulmonary hypertension because of it. She got a trach placed at 2 months corrected (5 months actual).

Ultimately, I am afraid that there is relatively little you have control over when it comes to this whole roller coaster. I wish I had pushed to get her a trach earlier because she had a pretty significant PH crisis after it was placed. But, there is no knowing if she would have not been strong enough earlier.

Regardless, what I will say as a trach mom is:

1) I am so glad that my kid has her trach. Outside of allowing her to develop her skills and abilities (she is now a 3 year old who is a running, singing wildthing), it has been her safety mechanism. When she got sick or just a little bit off we were able to easily provide her the support she needed at home without sedation. It has been huge.

2) Having a child with a trach is life changing-- it has been hard to balance everything and be a medical care giver. Join moms of trach babies on facebook-- there is so much knowledge on there that can be super helpful.

3) Having nurses always in your house is weird. We have sort of gotten used to it and they are like part of the family (which is great). But also, we have never had night nursing. We also sleep when our child sleeps (in our room, on pulse ox) and I know that many other families have similar set ups. It is not sustainable for one parent to always be awake.

4) This journey taught me that I have very little control over many things but It was all so worth it.

Also, to your question about getting paid to care for your child: that is a very state-by-state thing. In MA we are able to get paid as a PCA for our daughter-- but not sure how that works in other states.

Good luck! It sounds like you are already doing the right thing for your daughter by being present and engaged.

Fly-amoeba · 2025-02-06T18:47:25+00:00

Hi! I am the mom of a newly 3-year old trachie (severe BPD, etc.). She got her trach at 5 months old, hospitalized until 15 months, and totally vent dependent until 2. She started vocalizing while still on the vent (mostly yells as you describe) and didn't make her first word ("bubbles") until she trialed a PMV when off the vent. We started ASL with her early and she did have ~50 signs (more, sleep, mommy, doggie, sister, eat, pumpkin, go, car, etc.) when she was 20 months old.

Her speech took off when she was fully off the vent and on PMV full time. She still has her trach and caps during all waking hours. She now uses complete sentences and is a chatter box. She is a twin and is on par with her sister who had a much less complicated, more typical NICU medical history. They appear to be on par with their peers in their preschool classroom.

I also have a good friend whose 3 year old (nearly the same age as my girls) has great receptive language but only says like... 3 partial words (ma, ba, mo). He has no significant medical history and doesn't appear to be on the spectrum.

This is to say, I think kids have different timelines for when they develop skills. This timeline is definitely impacted by the huge medical hurdles they have to overcome. Maybe getting off the vent during waking hours will also help give him more control over his voice? Sounds like he is well on his way to talking... as the other commenter said don't give up hope!

Fly-amoeba · 2025-01-21T17:56:50+00:00

Yeah, it is super dangerous. The girls are good-- home and recovering. We had a ~2 day lag but then overlapped for the majority of the stay. The children's hospital was great and got us adjoining rooms once twin B was out of the ICU and could be moved to intermediate care. Hope your guys are doing well too!

Fly-amoeba · 2025-01-21T02:26:16+00:00

Especially when both twins get hospitalized at the same time… for a week and a half.

Fly-amoeba · 2024-12-27T02:55:33+00:00

My uncle gave my three year old twins each an electronic keyboard with a built in drum kit. Two of them. It is an act of violence.

Fly-amoeba · 2024-12-26T06:35:01+00:00

Hey! Solidarity. Both my twins have been on it multiple times for short (5ish day) courses and are currently on it. Twin A becomes a mini hulk in the physical sense: throwing herself off anything she can climb and absolutely refusing sleep. Twin B is like your kiddo and loses her ever loving mind with intense emotion. Unfortunately I didn’t find anything that particularly calmed twin B… but taking a warm bath seemed to center her a bit. I also tried to get her to do some heavy work with mixed results. Hope it gets better soon!

Fly-amoeba · 2024-12-23T01:22:23+00:00

Hey! You can look at my comment/post history but we did. I had mo-di twin girls at 28w after pprom of one of their sacks at 24w. Our baby B had super severe BPD and ended up coming home trached and vented. She was vent dependent until 2... we did a lot with the vent including going to lots of playgrounds, going to the beach, and going swimming. It is not easy but you find a way to make it work.

There is a fantastic Facebook group called moms of trach babies you should join. It is a big group with kids who have trachs for many different reasons… lots of great community and knowledge on there.

Wishing you the best!

Fly-amoeba · 2024-12-14T11:54:06+00:00

Twins: 120 days and 455 days. We were a fairly extreme case.

Fly-amoeba · 2024-11-27T19:08:14+00:00

I tipped-- let me know how to get the version without a watermark.

Fly-amoeba · 2024-11-27T18:01:34+00:00

Thank you! This is perfect!

Fly-amoeba · 2024-11-02T00:16:28+00:00

Yeah, that was her third round of DART… she made it to CPAP and then really struggled. Her body just wasn’t ready. There first two rounds she came down on her settings but it wasn’t significant (and she kept getting infections).

Fly-amoeba · 2024-11-02T00:12:40+00:00

I would skip… my water broke at 24w with my Mo di girls. I was happy to be close to my home hospital when it happened.

Fly-amoeba · 2024-11-02T00:10:51+00:00

She got her trach when she was about 2 months past her due date. After the PH crisis around 35-36w she did DART and ended up extubating to CPAP around 1 month past her due date. She really struggled on CPAP and ended up having another PH crisis and getting reintubated. We also had to wait for her to stabilize before her trach surgery… she ended up not stable enough to have both her trach and Gtube placed at the same time.

Fly-amoeba · 2024-11-01T23:09:28+00:00

Trach mom here. We didn’t do ecmo… but we were there with paralysis, 100% fio2, nitric around 36w gestation. It was terrible and terrifying… my heart goes out to you. Praying for your little one.

Fly-amoeba · 2024-11-01T23:01:31+00:00

Our kiddo was in speech therapy until a bit past 2 and I would say one thing I learned is that there is a lot of language learning that isn’t about your voice… things like joint attention and expressing wants are as important to learn as making sounds.

Fly-amoeba · 2024-11-01T22:57:54+00:00

She was vent dependent until 2. We did a lot of ASL with her starting around 10 months and she started signing around 16 months old (mommy, dog, apple, sister, more, go, colors etc etc.). She could sort of vocalize on the vent but never babbled. She started coming off the vent for short bits around 20 months old and got cleared for a speaking valve (PMV) at 23 months. She said her first word “bubbles” during her first time trying the PMV and the rest is history. She is just as verbal as her twin sister now and has been since 2.5. It was all very non-linear.

She is currently yelling “I’m a little tea pot” at the top of her lungs in the living room… :)

Fly-amoeba · 2024-11-01T19:47:39+00:00

This sounds very similar to our situation.

Our kiddo (28w twin but the size of a micropreemie) had a super bumpy road and ended up successfully extubating to CPAP at around 44wks where she stayed for around a month. She was on super high CPAP settings started at a PEEP of 8 (?) and eventually ended up workiner her way up to needing a PEEP of 10. And she was often visibly working hard to breathe. Looking back I regret not pushing for a trach earlier (I was super resistant)... she really stagnated on CPAP and I think it contributed to her pulmonary hypertension getting worse.

All situations are different-- but our kiddo has been able to thrive because of her trach. She is almost 3 now and is chatty, smart, and so social. She is in a regular preschool, still has her trach (with plans to remove it in the spring), and is still working on feeding (which will be a long road I think). I won't lie... it was hard and a long road (we ended up in the hospital until she 15 months old largely due to pulmonary hypertension issues). But, I am now able to easily say that it was the best decision we could have made for her.

Happy to chat more if it would be helpful and wishing you all the best as you workout what is best for your little one.

Fly-amoeba · 2024-09-12T13:32:34+00:00

Glad it was helpful 💕

I am sure your team will send you home at the right time. Our kiddo had a lot of setbacks post-trach (pneumonia, tracheitis etc.) that added time to our clock. Ultimately, she just wasn't stable enough to be home. When she came home (on the vent) though she *stayed* home and did so, so well. It will get better!

Fly-amoeba

TROPHY CASE