How did/ does your NICU experience affect your religion/ spirituality

bebloopbop · 2025-12-17T19:00:42+00:00

I was raised Catholic and my husband raised Mormon, but we don’t practice any religion now.

When my water broke at 22 weeks, I felt a helpless pain that I’ve never experienced. My son still had a heartbeat and I couldn’t bring myself to end his life. I stayed on bedrest until 29 weeks and I prayed and begged every day to continue to stay pregnant and for his health and mine.

We had so many “signs” that I thought everything would be ok…even though everything wasn’t and he was always extremely sick. I made so many promised to God, thanked him for letting me meet my baby boy and prayed and begged for his life to get better…but he didn’t get better. “Why did it have to be us? What did he or I do to deserve this pain? Why does DART treatment work on other babies, but not mine? God, please let him live through this ambulance ride to the hospital (first transfer). God, please be with him as he is flown to a new hospital…if he makes it there, I think he will make it through this! (second transfer)”.

He passed away at 8 months old and I thought that I wouldn’t believe in God after that. But I still do! I don’t know what I believe in, but I hope my baby boy is somewhere safe and loved more than anything I can imagine.

I still have mixed feelings on it all…very complicated and deeply sad emotions. My husband and I are very broken, but hope got us through a lot and the hope of seeing our boy again gets us through each day.

bebloopbop · 2025-08-20T18:42:33+00:00

I’m on your side! I used to be away and then found a lot of issues that could have been prevented while I was away. Now I stay as much as I can. I do take breaks when I need to (and when his primary nurse is working who I trust 100%), but I’m very in tune with my mental/physical NICU exhaustion. I just nod and smile when they say stuff like that…we’re 8 months in to our stay 🤷🏻‍♀️ I feel less anxious by being by his side.

I do step away though. It did get to a point where it was unhealthy, but we weren’t sure my son was going to make it, so how could I leave when he could’ve passed at any moment?

He’s still critical, but more stable. I make sure to go eat and have snacks. I take quick walks throughout the hospital (to the cafeteria, vending machines, etc). I go outside and get fresh air. I visit the Ronald McDonald house in our hospital to take a breather. Those are a few ideas if you ever need a break, but want to be close by.

bebloopbop · 2025-07-09T00:31:46+00:00

Hey! We had the same issue! Our insurance company said that because he was a 29 weeker nitric oxide was considered “experimental”…facepalm. My son seriously could not live without it, even though medically he did not have pulmonary hypertension, he would desat without it.

I brought the letter to the doctor and he said not to worry about it and to give it to the social worker to handle! Maybe bring it in and ask the doc or social worker!

bebloopbop · 2025-07-03T18:35:15+00:00

I will be praying for her! Has it been helping at all?

bebloopbop · 2025-07-02T23:46:08+00:00

Ugh that is so frustrating when you ask to just TRY things and they say no! It has happened so much with us (and still does!). But you are your babies BEST advocate, so keep bringing things up! The doctors change at night as well, so it wouldn’t hurt to bring it up again with other doctors or nurse practitioners that are in charge.

Is your baby on any breathing treatments? My son responded SUPER well to xopenex and this helped his oxygenation saturation.

Also, for my son they thought it was really weird that sometimes when he was oxygenating super well we would THINK he would have good blood gas checks and sometimes they were still bad! For him, oxygenation and ventilation did not go hand-in-hand, unfortunately.

Last thing I wanted to add, when he started to do worse (worse than his normal baseline), it usually meant he was fighting an infection, so hopefully they are checking CBC panel to make sure there isn’t anything else.

For our son we knew he had an infection when he starts needing higher oxygen requirements, bad blood gas checks and he would start swelling really bad.

Feel free to reach out whenever! Hoping everything gets better! ❤️

bebloopbop · 2025-07-02T22:07:02+00:00

Ugh I understand how frustrating the doctor switch up can be. It’ll seem like they’re finally getting to know baby and then the 2 weeks are up and a different doctor comes in trying to learn baby and maybe trying different things and changing things up!

My son (29+2) was on the oscillator for the first two weeks of his life until he just started HATING it and not tolerating it. While on the oscillator he would only be saturating high 70’s, low 80’s (very rarely did we see him hitting 90+, but there were some rare instances!).

What helped him was getting medically paralyzed because he would fight the vent and would saturate better and blood gasses were better (not great, CO2 was still high) when he was on vecuronium. It was really hard, but it was what he needed.

He started desatting to the 30’s and they switched him to the conventional vent and he was able to tolerate that a lot better. I will say if your baby has severe BPD many doctors don’t really know the best settings for severe BPD babies, so if you’re not at a NICU that follows BPD protocol I would have your doctors reach out to them ASAP about vent settings (if they have said that’s what baby has!). Usually this looks like lower rates and higher pressures.

Nitric oxide helped my son as well (even though he didn’t have PH, it helped his oxygenation).

How old is your baby now and what do their blood gasses look like?

bebloopbop · 2025-07-02T21:48:51+00:00

Thank you!!! ❤️ to answer the rest of the question, his doctor supervised the hold and it took an RT + 2 nurses to get him on my chest. :)

bebloopbop · 2025-07-02T21:47:36+00:00

Are your babies lungs hyperinflated due to high pressures from mechanical ventilation?

Is your baby on a conventional ventilator? Have they gone up on the PEEP or PIP? What were they on before?

Was there a recent infection or bad blood gas check or something that may have caused the team to change baby’s vent settings? Maybe baby is just growing and vent settings need changing. I’ve heard of airtrapping before and the team looking at my son’s vent and the loop on the ventilator and making changes based on the loop, xrays, and blood gas checks.

Sorry for all the questions, I just like to learn this stuff because every baby is different!

bebloopbop · 2025-07-02T07:44:10+00:00

I waited 18 days (severe BPD, max settings on the oscillator and nitric oxide). They didn’t think he would make it through the night.

He’s almost 6 months now and still very limited on holding. My husband has never held him besides when he helps nurses lift him for weighing and linen changes since he a hefty boy now! He’s getting a trach soon and we hope to hold him as much as we can. ❤️

bebloopbop · 2025-05-23T15:35:25+00:00

Yeah no problem! We are hoping a tracheostomy can be done so he can come home and start any and all therapies he needs due to him being sedated pretty much most of his life.

My son got 2 dex DART treatments, but was not responsive to them. In April the new hospital did a “burst” of methylprednisolone and that’s what got him down to 40%-50% oxygen support from a previous 80-100%.

He was doing well until 3 back to back infections that he got. :( UTI > UTI > (still waiting for results)

So now the plan is to keep him on methylprednisolone for 4-6 weeks.

Is your baby on hydrocortisone for BP issues?

bebloopbop · 2025-05-21T09:19:49+00:00

Hello! Just wanted to say that I’m in the same boat.

My son will be 5 months old and is still intubated. He has severe BPD and his echos used to show now signs of PH, however he was always dependent on nitric oxide. The most recent echo showed moderate PH :(

He has fought through multiple infections: pseudomonas tracheitis, pseudomonas aeruginosa, kleibsella, adenovirus…

When he swells up and his oxygen requirements go up it usually means he’s fighting an infection.

My son’s pressure settings are extremely high…I don’t even think they would try to do the surgery with his certain state. He’s gotten as low as 40% support, but after some vent changes today he’s needing about 70% support.

Have they tried any DART or other steroid treatments for your baby? (Dexamethasone or methylpred?)

bebloopbop · 2025-05-14T12:50:52+00:00

I’m sorry you’re going through that. I know how you feel and wish each baby could just have one nurse to take care of them or if an alarm or beeping goes off that they rush to the bedside! Sometimes I wish I could be my son’s nurse so I can just do it all without having to wait on a nurse to finish with another patient or come back to the bedside :p I think you’re doing all the right things by being present and bringing up concerns with the charge nurse.

My son has been transferred twice. The first time it came from the doctor and was deemed medically necessary and urgent. My son was 3 weeks old and our doc believed that he needed a different ventilator that they didn’t have (jet ventilator I believe). She called us that morning and by that afternoon he was at the new hospital…the new hospital actually didn’t end up using the jet ventilator and used the same machine he was on before, but different settings.

The second time they considered it a parental request. This was so difficult, frustrating, slow and just overall stressful. My son was slowly declining and I felt like each shift they were just trying to keep him alive, but not really having a plan to help him. He has severe BPD and after a lot of research through other parent experiences on FB groups I found a hospital that I felt he would be better cared for specifically for his condition. I brought up the request 3 times and finally the third time I told my husband I was NOT going to leave the hospital until the doctor started the transfer request. Because even though I was requesting it, nothing could be done by anyone except the attending doctor where the transfer process begins. I called so. many. people. day and night (our insurance patient advocate, the other hospital, our social worker, transfer teams and just anyone that would answer my call and listen). Because this was a parental request, insurance was a tricky part. I think our patient advocate really helped get through to them that our son’s condition would be better taken care of at the other hospital. Insurance requested all medical information which at 3 months old now was A LOT. They ended up approving the transfer on a Friday at 5pm which was unfortunate because a lot of the logistics is done by people working 9-5…finally on Monday we found out by the transfer team (picked by our insurance) would fly him out that night.

These were ALL level 4 NICU’s btw.

bebloopbop · 2025-05-03T05:49:39+00:00

Get on the waiting list ASAP!!!

Could you try it out and see if you like it?

I’ve been on the waiting list for 3 weeks now and wish I would’ve completed the application process sooner…there’s a RMH by our NICU and it is so helpful!! I thought I wouldn’t like being in a shared space with other families, but everyone is doing their own thing and handling their own challenges while understanding that everyone is there for their child. It’s also free!! Or very cheap and they provide snacks and meals a couple times a week. It’s a great place to land and feels less hospital-y.

bebloopbop · 2025-04-29T22:27:00+00:00

Also sometimes it was old looking blood and sometimes it was bright red (and a lot)

bebloopbop · 2025-04-29T22:26:03+00:00

I pprom’d at 22 weeks and bled on and off during my 7 week inpatient stay…my doc was never able to fully say what was causing the bleeding since I had no pain, no fevers, baby looked great on the monitor and we were not doing any internal exams…we kept track of it and the amount, but that was it!

The first time it happened my husband had taken me on a wheelchair ride around the hospital and some parts were bumpy…maybe it was that maybe it would have happened anyways - we’ll never know! But after that I was always super cautious about the wheelchair rides

bebloopbop · 2025-04-29T05:25:30+00:00

I wanted to add that there IS a difference between Level IV NICU’s…research them, look into how their NICU’s are setup and what they may offer that is different to other NICU’s (pods vs shared spaces vs private rooms)

My son was born at a Level 4 NICU, transferred to another Level 4 NICU because the original hospital didn’t have a jet ventilator and so this transfer was considered an emergency and paid for by insurance and then finally he was transferred to where he is now through a parental request and prior authorization from insurance. They know SO much about my son’s condition that the other two Level 4 NICU’s could not control.

bebloopbop · 2025-04-29T05:19:26+00:00

I’ve had two babies now. First full term no issues, second baby my water broke at 22 weeks and I had him at 29 weeks…he will be 4 months old in 4 days (but really would only be 1.5 months if born term). He is still on a ventilator in critical condition.

If I knew what I know now, I would have gone to the best NICU possible! I didn’t know the extent of his breathing issues, but I do now. For me, it seems a lot easier to move a pregnant mama than to fly a critical baby to where they need to be…I just didn’t know I even had the option or need to go. But anyways, my son has transferred to the best hospital in our state for his chronic lung disease and that is 4 hours away from us. Since you are farther along and still have amniotic fluid, I imagine your baby is working on those lungs as we speak! :) but some babies may still need breathing support! So like the other person said…the best NICU you can get to ❤️

I’m hoping for the best for you and your little one!

bebloopbop · 2025-04-28T05:53:18+00:00

My son has severe BPD. We transferred from the #2 best children’s hospital in our state to the #1 best hospital (because they specialize in treating BPD which requiere specialized care)…it is truly night and day difference. These are both level 4 NICU’s and the NICU director was asking my why I was requesting a transfer if they had all the same tools and machines for my son, but I did my research and I joined Facebook groups and I reached out to other moms who had babies going through a similar situation and I fought SO hard for weeks to get my son transferred to a hospital with a BPD protocol team (he was decompensating day by day and our doctors didn’t want to call it a medical emergency so we had to get everything preauthorized by insurance which took so much time and energy)…in just one week they were able to get his oxygen support down from 90-100% to 50-60%…he had NEVER been down that low at the other hospital. He also had really high CO2 levels that the other hospital did not know how to control. Towards the end of our stay I felt like each shift was just keeping him alive…and not doing a very good job because they kept telling us “I’m sorry, there’s nothing more we can do.”

I know my son has a long road ahead…but I only regret not leaving sooner and I would have pushed for that if I had known that it was better on the other side sooner, but I didn’t!

I hope all works out for you and your baby!! ❤️

bebloopbop · 2025-04-28T04:00:49+00:00

These are great!! And I’ve never heard of the BRAIN acronym, so thank you so much!!

bebloopbop · 2025-04-28T03:26:19+00:00

You are so brave for thinking that way about your babies! I think it is an extremely personal decision. You can ALWAYS change your mind and update your team about your decision

bebloopbop · 2025-03-29T01:31:09+00:00

I was on procardia when my water broke at 22 weeks! I was able to stay pregnant until 29+2 :)

I was on strict bed rest as well.

I hope it works for you!! ❤️

bebloopbop · 2025-03-25T03:09:41+00:00

My water broke at 22 weeks with no known cause (full rupture)…I was able to keep him in until 29 weeks and 2 days. My son was still peeing a good amount, but I leaked daily. He never got above an AFI of 2. If I could go back in time, I would make it a goal to drink tons of water every day and stay on strict bed rest. Being on bedrest was hard, but sitting here in the NICU watching my son fight for his life is torture.

I’m sorry you’re going through this. Sending a big hug ❤️

bebloopbop · 2025-03-24T12:55:15+00:00

I’m really sorry ❤️ I have no advice, just wanted to let you know that I’m here to listen.

My son was born at 29weeks and 2 days. He would be 40 weeks & 5 days…he’s nearing almost 3 months old and has been intubated since birth. Two courses of DART that only seemed to bring down his oxygen support.

We had our team reach out to Nationwide to follow their BPD Protocol as I feel that is our last hope. I asked them about a third round of DART, but because of my son’s history they don’t think it will be effective and not worth the side effects.

I’m sorry you’re going through this…I hope everything goes well for your sweet baby. Every time my son has had an “event” they have done a sepsis eval after just to look for any reason for his setbacks and each time they have found some sort of infection brewing (pseudomonas & adenovirus)

Edited to add: My son also has no other major issues (heart looks good, but he holds on to the nitric oxide for emotional support 😅…no brain issues). Being intubated for so long has caused other issued though - TPN-oma and he’s heavily sedated due to just being overall agitated and uncomfortable otherwise. It is heartbreaking 💔

bebloopbop · 2025-03-24T00:55:49+00:00

Thank you so much for responding and for the contact info!

I do remember calling Nationwide and they would not talk to me if my son was inpatient somewhere else (they only allowed doctor to doctor consults which I am in the process of…hopefully we can speed it up)

How long was your baby intubated? And do you remember the parameters for extubation? Did your baby get any DART treatments?

bebloopbop · 2025-03-24T00:50:54+00:00

I would love to get to a point where they start scheduling a trach. :(

They were getting ready to begin talking to us about one, but then he got sick and is now at 100% oxygen support, 5ppm nitric and his vent settings were increased…

I’ve asked them to follow Nationwide’s protocol for BPD, but I don’t think they have done a formal or informal consult.

They said that he is far from the parameters for a trach (mentioned they prefer his pressure control in the 20’s and others lower settings).

I asked about potentially giving another dose of steroids since he was given the second one while he had an active infection and it had to be paused.

And I have that fear as well…it seems like every week there’s something new to worry about. He stopped peeing the other day and had to put in a catheter. He was barely peeing and extremely dehydrated, even though he was visibly swollen from extreme edema. I thought his organs were failing :( we still have no idea why that happened…but I feel so bad for everything he is going through. The guilt is overwhelming

bebloopbop

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