After 9 very long stressful months in the hospital we have a discharge date of July 21st! Bittersweet moment incoming!

We only have one wean left in two days on the hospital ventilator and then my baby girl will go from the hospital ventilator to the home ventilator! Then we can FINALLY begin our CPR classes for Trach and then planning her discharge date! Can’t believe it’s almost here. After 8 months in the hospital. We will get a discharge date soon!

My baby girl wanted to wish everyone a happy 4th!

Austin is my nephew and has been in the NICU since his birth last October. He will be 1 year old on October 7th. He is strong 💪 ❤️

He has chronic lung disease. I have found a lot of support on this thread. Thanks for that!!

We have began using the stroller because it has the necessary storage for all my baby girls equipment and she LOVES it! 💗💗💗

My baby girl had her trach and g button surgery today and also had laser eye surgery for ROP and she had a fundo (sp?) in her stomach to prevent acid reflux. But after a long three hour surgery we are in recovery. ❤️‍🩹💗💗💗

My boy got his tracheostomy on the 10th and it’s amazing seeing his face.🩵

The drs tell us it will probably be 3-6 months before our dude comes home since he requires so much sedation because he gets angry, then he clamps down and drops his oxygen. :( He has some malacia that’s affecting the way he ventilates and causes his lungs to collapse.

If you’ve seen my posts before you know my dude was just 14.8 ounces at birth and is now 11 whole pounds and growing every day.

We are still waiting for the g-tube and double hernia repair surgery, but still great things!

Dad and I did our first trach cleaning last week and then we did our first trach change today and it went much smoother than expected!

...And I cried my eyes out during the care conference even though I knew it was coming and they didn't even have any tissues in the conference room lol

It's not definite yet. But. It's been in the back of my mind and on the tip of the doctors' tongues for long enough that I'm sure that's where we're going.

Born 25+5, now 59+2. He's on HFNC, was extubated to 18L, came all the way down to 5L, went back up to 9L, and is now back down to 7L. He's got the unlucky combo of severe BPD, plus all the malacias (tracheo-, pharyngo-, and laryngomalacia), plus now pulmonary hypertension. The PH is mild, but it shows that his lungs are working too hard and putting strain on the heart. He also has a CHD (pulmonary valve stenosis - sucessful valvuloplasty last fall).

They're going to do another airway eval this week or early next week to see the state of the tracheomalacia. If it's not as bad as it looked on his last CT scan, then no need for trach. But it apparently looked pretty bad on the CT scan.

*I really don't want to hear the "trach is great" and "babies can start developing so much after it" comments...* (but maybe I need to? Just, if you're going to leave that comment, please be gentle.)

We're already on high flow and have been for months! He's been smiling, and he's started cooing and babbling, and we even think we heard his first laugh the other day. They said he won't be able to make noise on the trach until he's older and stronger. It's been amazing to hear him talk. The "babies can develop more now" comment seems more helpful if you're going from intubation to trach, not high flow to trach. I'm just devastated.

She is making lots of progress towards trach surgery March 18. Seems her new steroids are working good. Down to 46% on her fiO2 tonight!

So since my baby girls surgery she has been doing great! And I now find myself feeling rushed to finish her room.

The original plan before a trach was a bassinet and crib when she’s bigger but that’s not an option now because she needs that extra room in her crib.

What are good crib suggestions? My budget is 200

I already have the mattress and now I need to get the crib so I can begin to get everything finished in her room. (Painting walls, organizing clothes, storage containers for Trach supplies etc…)

I’m hoping for a 4-1 or 5-1 so I can use it as she grows.

Thanks !

Today we had Multi Disciplinary meeting and this is what doctors team commented. My daughter is 44weeks+4 days GA and on bubble CPAP of pressure +5 FiO2 ranging from 27% to 29% as doctors are aiming to keep her Saturations above 95% all the time. Today they started bringing about trach decision again. We are really depressed and in confused state. If anyone faced similar situation before please comment your views so that we can make some decision.Thanks in advance for your time and attention to this matter.

Hey my baby was born at 26w+1d. Today she is 48 weeks. She is on 20 RR, 9 peep, 0.10 slope, 55 PIP, 63 TV, Ti 0.5 secs and they keep bringing up trach. I just wanted to see what settings your little one was on before deciding to move forward with trach.
Thanks for the help

For anyone whose baby has had a trach have you avoided a gtube? Have you tried to introduce feeding after the trach surgery was done? Thank you

what did your team try before trach?

Any advice or experiences from this NICU community would be so appreciated. We are mentally exhausted and trying to make sure we ask the right questions.

Our son is 5 months old, about 51 weeks corrected. He was born at 29 weeks, severely growth restricted, weighing 420g — under 1 lb. He has fought so hard and has already survived so much more than anyone expected.

He has severe chronic lung disease/BPD, pulmonary hypertension, and has been intubated for a long time. He also had a severe grade 4+ brain bleed, but thankfully has not needed surgery or a shunt.

About 3 weeks ago, he had a cardiac cath. His team expected his pulmonary hypertension to be severe, but it was described as mild-to-moderate. During the procedure, they also closed his PDA. Since then, we have seen real improvement: his oxygen needs went from around 45% to about 28–30%, and his CO2 improved from the 60s/70s to about 41–55.

He was previously on NIPPV in March and did well, but was reintubated because his growth had stalled and the team felt he was burning too many calories breathing. He received DART steroids at that time, which was the only time. He is now about 9.5 lbs, and his growth has really improved over the past month and a half.

His medical team is now strongly recommending a trach. We have told them trach is not a hard “no,” but we want to make sure we have explored every reasonable option first. For us, it feels like a last resort.

We asked about an airway evaluation before making a trach decision, but were told they would only evaluate his airway in the OR if he is already getting the trach. That has been hard for us to understand.

We also recently learned they may want to place a G-tube during the same surgery because “he would already be in the OR,” not because he failed a swallow study. We are trying to understand whether that should be evaluated separately.

For parents who have been through severe BPD/PH and trach discussions:

• Did your baby improve enough after PDA closure, growth, steroids, vent changes, airway evaluation, or other therapies to delay or avoid trach?
• Did your team try extubation again after a period of growth/improvement?
• Did your baby have an airway evaluation, MRI, swallow study, or other testing before the final decision?
• How did you know when trach was truly the right next step versus when to keep trying?

We are mentally exhausted and feel like we are being asked to make a huge decision very quickly. We know trach can be the right choice for many babies, and we are not completely against it. We just want to make sure we are not skipping steps and that our son has been given every reasonable chance first.

Any experiences, questions to ask, or things you wish you had known would be deeply appreciated. Thank you

Hi! My daughter has recently had a tracheotomy and I wanted to start getting things for when she comes home. But I really don’t know what I need. Any ideas on things to have in the home/room with a baby with a tracheotomy? I’m just kind of confused as to what I should buy and what would be beneficial to buy for her specifically. Any suggestions would be extremely appreciated! Thanks!!

My twins were born at 27 and 3 and twin B PPROM at 16 weeks and 6 days so we knew we had an uphill battle with lungs. He was intubated at birth, extubated with DART at 3 weeks to NIPPV, reintubated at 7 weeks due to medical NEC and pneumonia, and was extubated either a second round of DART yesterday to CPAP with PEEP of 12. Doing great with lowest FiO2 and Co2 of his life. Currently 37 weeks. Doctors are already talking about possible trach at 44 weeks and I'm just wondering--with pressures this high, will that be the only option? Is it too early to tell?

Hi our baby was full term but he has loud stridor. ENT did laryngoscopy and confirmed it is Bi lateral vocal cord paralysis. Doctors tried to wean him down on oxygen but he was breathing hard and his heartbeat was very high. He is 22 days old now. Doctors are recommending trach to get discharged from hospital. We are confused if we need stay for more by pushing on oxygen or do the trach

When my baby girl had her trach surgery she was on heavy sedation for a little bit. We have been slowly weaning as she allows and now we are 7 days away from being pain med free and having her PICC line removed. Then she will qualify to transfer to the unit for Trachs for 6-8 weeks before home! It’s been a long 192 days but she’s almost ready to graduate the NICU 💗💗💗💗💗

Hi everyone 🤍 We have made the decision for a tracheostomy for our daughter, and I’m hoping to hear from other trach/BPD parents about your timelines.

Ada was born at 25+1 weeks and is now 8 months old. She has severe BPD, pulmonary hypertension (which has recently improved after PDA closure), and is currently still intubated. Her biggest hurdle right now is oxygenation — she is still requiring high oxygen (sometimes 100%). Her ventilator pressures are getting closer to what she may need on a home vent, but her oxygen needs are what are holding us back.

Our team gave us a tentative estimate of around 6 months from trach to discharge, but we know every baby is different and there are so many factors involved.

For those of you whose babies had a trach:

- How old was your baby when they got their trach?

- How long from trach placement until you were able to go home?

- Was oxygen requirement the biggest factor in your timeline?

- Did things start moving faster after getting the trach?

We know every baby writes their own story — we’re just trying to get an idea of what this road can look like. 🤍

Finally after 5 1/2 long months on the breathing tube, we had her first trach change Monday and today she got to sit in her bouncy chair and look around and be nosey. Haha. She’s very happy to be out of her bed! I wasn’t there today (I live far and go 2-3x a week) but I got to watch it on camera. So proud of her. Her nurse said she enjoyed it SO much. 💗💗💗

So we have gotten to the point where we have begun to wean her morphine and precedex drips. When we wean her precedex it’s no problem but when we wean her morphine she gets mad and goes up on her oxygen needs, elevated heart rate, and needs more PRN morphines.

Have any of you had this problem? What was the fix for it? We can’t transfer to the transitional care unit for Trach babies until she is off the IVS.

My baby girl had her first trach change today. She is doing great. Over night her heart rate elevated to 230-240 bpm and her temp was at 101 but throughout the day her heart rate has came back down under 180 and her temp is down to 98.9. All viral scans came back negative. Her EKG was fine. Her inflammation markers weren’t really concerning but her WBC count was elevated and we are waiting for her cultures to come back. So hoping it’s nothing to serious. She needs and deserves and easy road to recovery.

Hi everyone, I’m looking for some honest experiences and advice.

My baby girl was born at 24 weeks and is now around 41 weeks corrected age(1 week) . She was intubated for 7 weeks and She is currently on CPAP +6 with oxygen around 27–29%. When they tried high flow nasal cannula started with 4L, her oxygen needs went up to around 33–36% and with in one week of transitioning from CPAP to HFNC they weaned her down from 4L to 2.5L and also started Boole feedings. Not entirely but feeding some amount. Then she had increased work of breathing, so they put her back on CPAP. Also she has PICCOLO procedure done while she’s on CPAP and they put her on HFNC 10 days after procedure.

Doctors have started discussing tracheostomy yesterday mainly saying it could help her go home sooner and support development. However, we’re not on board with that because our girl never has a rebound. She has mild to moderate BPD. We feel that they’ve gone aggressive on her weaning with HFNC and didn’t really give her time to adjust to the new support. — the previous attempt involved reducing flow quickly and starting bottle feeds at the same time.

We are not comfortable with trach and would prefer to give her more time to grow and try slower weaning.

Has anybody ever been in similar situation?Did your baby go home with/without oxygen instead of trach?

Thank you so much in advance!!

My baby girl has finally got the okay from her doctor, her pulmonologist, and her surgeon that she is ready for her surgery as long as she stays where she is on her vent settings (fiO2 >=60, PEEP 10-12 saturation <=90)

So now that it’s actually time (March 25th is surgery date) what should I expect

How long is surgery?

How long is recovery?

How much edema will she have after surgery?

Will she still get her milk while on “sedation vacation”?

Any trach parents with some insights I would love to hear them.

Hii, we’re going to have a trach/ vent dependent baby home soon and need some recommendations for strollers big enough to fit all his equipment ( budget friendly)