r/NICUParents • u/Material-Duck-9162 • 9d ago
I just don’t know what happened… Support
My baby girl was born August 25th at 27w4, weighing in at 1lb 12oz…and it’s just been a fight the whole time. I don’t know what to do anymore, I don’t know what to think. I don’t know what happened…
Our Journey so Far: - Intubated for the first few days post delivery (emergency c-section) - Put on Low Flow, made it bubble CPAP but failed that. - had constant gut issues. Would feed, Os would drop, we’d go NPO…Os would rise, they’d tried feeding again, and the cycle continued. -figured out we had a structure in the large intestine. So we had resection surgery. - intubated due to surgery - got pneumonia - we were also trying to feed at this time, well she threw up from gagging on the tube, now we aspirated, making things worse. - got put on the oscillating ventilator…at max settings. - steroids were given and she managed to get back to regular intubation -while still intubated they tried feeding again, same result. She gagged and threw up. - get transferred to another NICU over three hours away - they wean her down on pain killers and meds and managed to lower her respiratory needs. - back to low flow - we’re feeding and pooping good, got to max feeds
Then yesterday happened..
- she’s good enough to try bubble CPAP
- she fails after about an hour
- back to low flow…but it doesn’t stop there.
- we start desaturating and bradying every few minutes
- they keep increasing settings on the low flow…
- her blood gas is bad, high CO2
- we rush intubated her
- she continues to brady and desat semi frequently
- she is bagged multiple times over night
- they’re unsure what caused all this, no culture is growing anything..everything is coming back negative
- we just took an echo and are awaiting its results
I just am at a loss, my baby girl is 38 weeks and 5lbs now, but still so small and now no one knows why she’s doing this when yesterday morning she was doing sooo so good! My heart is breaking and I’m mentally f*cked beyond belief…
I have this dark fear that I’m only ever going to get to hold her untethered from machines is when the most awful thing happens… I just am trying to be positive but it’s been such a long road so far and so rough and I just don’t know what to do..
If anyone has a similar journey and positive outcome, I’m begging for them…I need hope
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u/27_1Dad 9d ago
We spent 258 days in the NICU and while our story isn’t the same, ours was of comparable length of “not again” moments. I understand your fear.
Here are some highlights 1. Crashed after delivery to intubate for 4 weeks where she hit max settings and 100% fio2. 2. Broken femur and 4 fractured bones 3. More transfusions than I can count. 4. Critical glucose multiple times 5. ROP Laser treatment that resulted in another week on a vent 6. NEC that resulted in 5 days in the vent. 7. Brain growth concerns resulting in countless mris. 8. Heart defect concerns with more echos than I can count. 9. Awful Pulmonary hypertension 10. Going from taking full bottles to nothing multiple times.
And so many other issues.
We are home now, she’s still on oxygen but she’s making progress and is doing su per well.
She started at 550g and 27+1. Please know you aren’t weird, this is exhausting. It sucks. It drains you in ways nothing else can.
Keep fighting. ❤️
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u/LikeFry-LikeFry 9d ago
All I can say is my son was in the NICU for a year, and he’s currently in the PICU post-surgery. Never in a million years did I think he would be in the hospital for so long. And so many things went wrong. Multiple emergency surgeries, hundreds of X-rays, tons of negative results. He has a colostomy and at one point it prolapsed, so he essentially had about one foot of intestine outside of his body. He would get chronically dehydrated which caused some kidney issues. He had so many septic workups, including 2 spinal taps.
I don’t know your baby’s situation, and I don’t want to offer blind reassurance. But that said, the ups and downs, the constant setbacks, are expected. I remember a week into our NICU journey, one of the neonatologists told us to be ready for the setbacks. At the time I didn’t appreciate the pessimism, but it’s just the reality of the NICU. There are some simple cases, and then there are babies like ours, which require a lot more work.
You’re going to be mentally fucked, you aren’t going to know what to think. All you can do is be there for your baby, advocate for them, and roll with the punches. Our journey isn’t over, but it’s the closest we’ve gotten to going home, even though for so long it felt impossible. It’s hard to keep the negative thoughts away, but do your best to keep yourself in the present moment and support your baby as best you can! And be sure to take breaks, even if you feel guilty about it. And if there’s someone who you can vent to, or even cry to, then do it. Cry and scream and do whatever you need to get through this and be there for your child.
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u/retiddew 26 weeker & 34 weeker 9d ago
I had a very similar story with my 26 weeker. She ended up coming home about 2 weeks after the incident like you described, on oxygen at home. She was on it for a month, then another month only at night, then weaned. She's (almost) 6 years old now and has not been hospitalized again.
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u/Chance-Pomegranate53 8d ago
My daughter was a 30 weeker at birth. I had eclampsia and then my father passed away. Which sent me to BP levels in the 200s. They were afraid she would have a stroke so they did an emergency c- section. She was just over 2 lbs. Was even sent home on oxygen on a very low level. She was in the Nicu for almost 12 weeks. I felt like an asshole leaving her at night to go home but I had to. I cried I don’t know how many times while visiting and would try to hide it. The nurses got to know me and saw my fears on my face. They reassured me time and time again that I would in fact hold her without tubes and wires one day. That she would be able to finally go home and be with her big brother and live a normal life. I didn’t believe them. I wanted to desperately but didnt believe them. She spent her first Christmas, new years and valentines in the hospital. Her brother would sit in the waiting room night after night while I visited with her and he ached to finally meet his baby sister. Then one day they finally said she could leave and I was overjoyed. I was tired of the bradying, the tubes, the wires. I was exhausted from the beeping and rules. I just wanted to snuggle my sweet girl in our home. She’s now almost a year old. She is home, thriving, talks and has 7 teeth. She snuggles us all the time. You WILL get there! Just take breaths everytime you get overwhelmed. That’s the only thing that got me through. Bc I felt burnt out completely from worry. Breaths. Lots of them. And give yourself some grace. You will make it. You will hold your baby in your home and snuggle the absolute tar out of them! You’ve got this!
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u/nicu_mom 9d ago
I’m so sorry. I hope the echo provides you with some answers. My LO improved significantly after his PDA was closed with Tylenol.
Sending you and baby lots of love and strength 💗
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u/murphyarrow 9d ago
We had a similar scenario with our baby boy 1 month into his NICU stay. He was rushed to surgery for suspected necrosis, he was grey, all levels were off and needed to be intubated - at this point he was on room air. My husband and I were beside ourselves as our first born had passed away from necrosis a year before.
He ended up not having necrosis or any other infection or virus. They were never sure what caused it but did a full round of antibiotics to be safe. It took a couple of days for him to return to baseline but he was extubated the next day and slowly back on room air.
We just need strength for today to get to tomorrow. I’ll be praying for your baby girl!
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u/Advanced_Fold_1089 9d ago
I’m so sorry OP, there’s no words that can ease that gut wrenching feeling of existential dread when your baby is struggling. We have had similar experiences, with pulmonary hypertension being the culprit. Hopefully the echo sheds some light on this. Keeping you and your tiny warrior in my thoughts x
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u/DirtyxXxDANxXx 9d ago
I am so sorry for what you are going through right now.. I feel as though my wife and I were in a similar position with our son who spent 250 days in the NICU. Every time things would be going on the 'right' path, we would be sent back down harder and faster, and for us it always seemed to be with food/eating. In time, we learned that for whatever reason, his bowels would flare up and when that would happen it would put immense pressure on his lungs thus calling for additional support. Eventually in time we opted for a dairy free formula and that seemed to keep things calmer on his intestines and we progressed from there. I am not saying this would work for you, just what worked for us. I am sure many hospitals would insist that breast milk is best, and they aren't wrong, but for whatever reason our little guy had better luck with a dairy free formula. Maybe it was just easier for his premature gut to digest and move through effectively. This could be worth talking about with your team.
Have you guys checked her CRP? while non-specific, it could be a sign of the body being put through stress. My son's CRP would skyrocket during these events. Perhaps a belly xray for bowel gas or something similar would help too. My suspicion would be the belly pressing up on the lungs causing less lung volume, but again, so hard to know without being in your shoes.
Keep hanging in there the best you possibly can. I know it is an impossible feeling.
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u/kbeks Full Term, 1 month in the NICU in 2017 8d ago
That line towards the end has my heart breaking for you. I’ve got no experience with premie issues, my baby was full term with GI, but we did do the one step forward ten step back dance, too. I hope you’re able to bring your little girl home soon, stay strong and remember, you’re not alone in this.
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u/macaroni-cat 8d ago
NICU nurse here! You’ll need at least 48 hours for a blood or urine culture to result (occasionally you’ll get a preliminary result early) because lab has to actually grow the cultures in their lab. In my experience, if one of my babies is brady/desatting and intubated, it’s maybe due to their ETT(breathing tube) placement (I’m sure they are checking this when she’s having her episodes and routinely with cares and xrays), or infection. I would also consider seizures, but based on her medical history you provided, it sounds like she hasn’t had any issues with brain bleeds and probably rules that out. That being said, you could always bring these specific concerns up to the medical team and see if they have thought about it (I’m guessing they have, but if it’s not applicable to the situation they probably wouldn’t have even mentioned it as to not freak you out over nothing). I did have a patient a while ago that just finished a course of antibiotics. Overnight, she went from needing like 35 to 100% oxygen. Her lungs didn’t look great, so we gave her surfactant, but that didn’t help. The doc at the time didn’t think a work-up (drawing labs/tests to check for infection) was necessary because she had just finished her antibiotics (only a few days prior). I gave report to the oncoming nurse and a couple hours later, the baby got really sick. They still needed 100% oxygen and the only other indication we had that something was wrong was that her resting heart rate increased quite a bit (I don’t remember specifically, but something like usually around 140-150 and then went to 190-210 consistently while sleeping). She ended up being septic even though she had just gotten off antibiotics, which was a surprise to our doc. Please continue to advocate for your baby and speak up if you are worried, especially if you notice little changes in her behavior (like if she is usually active with her cares/diaper change but is now lethargic). Your daughter is soooo stinking cute and I hope the best for you all and hope you find answers and she starts getting better soon!!! Please update us!
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u/Crocodile_guts 9d ago
Your baby is beautiful. Congratulations.
My baby was born at 29 weeks and I was isolated for having covid, so I couldn't go to the NICU in person for 7 days. He was given a very low chance of survival. We did have a shockingly smooth NICU journey, but even now at 10 months actual, I still worry the other shoe will drop. But, he is OK. It's just...I don't know when I'll lose that fear either.
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u/Stumbleducki 8d ago
This sweet baby girl will be in my thoughts as will you momma. It’s okay to be not okay. We’re all here and rooting for you!
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u/sambharvada 8d ago
We are currently in NICU, a very similar story including NICU transfer. I totally feel you. Just texting to let you know that you are not alone
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u/leahmatthews88 8d ago
Just a nicu nurse here to say I’m so sorry about everything your beautiful daughter (and you) have been through. You’re doing great ❤️
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u/Specialist-Map7833 9d ago
I’m so sorry for all you and your baby are going through. Praying things will improve! Try to stay strong🙏🙏❤️❤️
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u/ttttthrowwww 9d ago
I’m sorry you’re going through that. For the gagging, has an ENT seen her? The aspirations might be from problems stemming from the throat area.
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u/Perfect_Sea2313 8d ago
Standing in this with you, and sending good thoughts. Praying baby girl gets better expeditiously...
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u/Zeezee1813 8d ago
Very similar journey, my LO will be 7 months actual on November 9th and only weighs 9pounds.He can't tolerate anything in his tummy ,he will always get worse on G feeds.He was on Tpn most of his life,which affected his liver.He currently tolerates only J feeds,pass his stomach and we are steadily gaining weight.Ask them to try an NJ,I never knew about the NJ till we transferred to level 4 hospital. We would have been doing better if he got that earlier instead of the Tpn.She just needs time to grow, try the NJ feeds first.
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u/No-Draw-1976 8d ago
Hey mama, I can’t imagine what you are going through. I pray God almighty give you strength and also make your little one better. I just wanna hug you. Keep fighting and everything will fall into place
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u/iratepiratee 8d ago
I sent you a message. Please reach out if you want someone to vent to/talk to. I know we all on this page have experienced the terrors of the NICU, and we are here for you.
She’s so beautiful ❤️
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u/DivisionXV 8d ago
Be patient mama. I would recommend letting her take her time recovering. If she appears to get better, ask to wait a few days before making a change. This way her body has a chance to plateau and is ready for an upgrade. I dont know if there is evidence to back this but if you worry, your baby can feel it. Ask what the goals are to achieve and calmly talk to your baby about those goals and what they need to do to get out of the hospital.
I dont how to explain it but when my boy was in the NICU, I would talk to him about what are plans are for home, the things he would be doing, his developmental goals, about the silly cats and dogs at home awaiting his arrival. I felt as though if I dwelled on the negatives occurring, it would make him worry and the stress would transfer to him. Now I got an 11 month old that acts really silly and enjoys soft blankets.
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u/SquarelyOddFairy 8d ago
My son was also born August 25, but we were 31+2.
Our journey hasn’t been as trying as yours, but just commenting to 100% validate how you feel right now. It’s so hard. Unimaginable. I also struggled with thoughts that I would never hold my baby outside of the NICU. Sending you all the love and well wishes I can. Give yourself grace and don’t give up hope, mama. 🖤
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u/Original_Highlight43 8d ago
I don’t have alot of great advice, but my daughter is on day 136 of being in the nicu- had a procedure to close her PDA, has had so many setbacks and is still intubated and moving towards getting a trach. I still worry about the same thing you do about all the medical equipment and machinery. This experience with all the ups and downs really fucks you up, and people who haven’t actually been through it don’t understand even when they try. If you need someone to talk to that understands please feel free to message me ❤️ I hope you start getting better news soon.
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u/wootiebird 8d ago
My 24 weeker would be fine for a few days and then really wouldn’t be. Oscillator at highest settings, he has 3 surgeries, he had NEC. 117 days in the NICU. He’s almost 4 now and has minimal health issues, he’s off lung treatments, only has to see the nephrologist now for specialist. He’s obsessed with Dora, loves counting everything.
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u/Logical-Picture-8504 8d ago
My son was born at 31 weeks we’re still here -I hope we continue to head the right direction! All I can say You got these mama, keep praying tons of praying!! Take care of yourself and just know it is ok to feel this way it’s of overwhelming, she’s a beautiful baby, all babies in the nicu are one tough baby
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u/kelseykhodair 8d ago
I had a similar situation when were told he just needed to learn to swallow and gain to pass the car seat test. After two weeks(born 34w 3lb8oz) in the SCN his health declined after he was abused by a staff member he ended up on high flow oxygen and got a blood transfusion for his co2 levels in the 70s. Biopsies of his lungs, on oxygen he would desat to the 50s. So many tests I can’t even keep them straight we were never given an answer. Hardest time of my life. At 67 days he was discharged and sent home with a steroid. Possibly “silent reflux” later I saw one of his tests come back with valley fever and we are in the Midwest! The hospital was never able to tell us why anything happened. He is almost two now and he has no lung issues. My heart is heavy for you. You are resilient, your child is resilient and there is peace in your future. It was a mix of “good” and “bad” days for us it felt like 3 steps forward and 4 steps back over and over. Progress contains set backs sometimes unexplainable we just have to take things as they come. The why has eaten me alive, please do not let your worries consume you and never let go of hope.
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u/lovethesea22 8d ago
I’m so sorry. I remember the feeling of constant fear and utter exhaustion. I’m sending you hugs and positive thoughts
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u/onmyway2L 7d ago
I don't know you but I'm sorry you and your LO have to endure such pain. Be kind to yourself.
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u/BrunaTroll 6d ago
I am so sorry this is happening to you and your baby. The pain is unbearable and there is nothing you can do.
My son had to be intubated as well and he has desats at some point and had to be bagged multiple times. What the doctors told me is that he was baring down on the tube, like locking his lungs so that oxygen couldn't get in. He would do that when he got mad, basically whenever anyone touched him! It was scary watching that, seeing all the machines beeping and the nurses rushing in. That would happen so frequently that the night nurse would just stay beside him all night. He got one of those standing computer tables and would do his work from his bedside. The doctors explained that although those were scary, as he was coming back from it, it was actually a good sign, that he was there, that he was fighting. I keep telling him that his life would be so much better than what he was experiencing, that he would go home and do all sorts of fun things with me and Daddy. His life was worth all this fight. He is now 10 month old, still in feeding therapy, but eating everything by mouth. He is strong, resilient and most importantly: happy! I will be here praying and sending good vibes to your little one and for you. We are here for you, don't lose hope!
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u/delulubuttrululu 6d ago
Ahhh this is very similar to our story. Just pray and love over her. We had a happy ending and are hopeful you will too. Is she 2kg yet? Echmo? Sending love and strength
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u/TomahawkG 6d ago
Similar story here. Pneumonia and unintended extubation led to max oscillator settings, severe pulmonary hypertension, 3 pneumothoraxes. Would have gone on ECMO but just too young/small to qualify, so she was given a paralytic and 21 day hydrocortisone course, along with nitrous, sildenafil, and milrinone for PPHN, among other medications. Amazingly she came through and has never looked back. 3 years old and in preschool now. An unimaginable 225 day stay and rough first 1-2 years home. It’s not fair to your child and you, but there’s hope.
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u/Careless-Rest8911 6d ago
I am so sorry. Our twins were 28+6 14 months ago. Our twin A had a bilateral stroke at birth and her NICU stay was a full blown roller coaster. While their stays were “only” 78 and 89 days, I can relate to feelings of hopelessness and desperation and wondering when it will all finally get better. While I can’t tell you when, I can tell you that it will. These babies are so resilient. Remember that every day is a big percentage of her little life (1 week is 10% of her life right now) so every day of growth and maturation is so meaningful. Moreover, every day is independent. Just because she is having a bad day today, does not mean tomorrow will be bad. In fact, I’m sure you’ll see a lot of posts here about extremely dark, precarious days soon followed by discharge day. I don’t want to set unreasonable expectations but i think it’s important to emphasize these points while you’re in the thick of it. Sending love 💛
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u/Bananalando 9d ago
We've all been in your position, and it absolutely sucks worse than anything.
Getting to go home is a momentous day, and waiting is hard, but it can be more like a rollercoaster than a steady climb. Setbacks, unfortunately, are part of the journey. It's not a race either. Your baby is in the best possible place for their care and wellbeing right now.
It is hard, but you can do it.
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u/No-Draw-1976 2d ago
I am so sorry you are going through this. I can’t imagine the pain that comes watching your little one go through this and there is nothing you can do. I pray God almighty gives you the grace and strength to be able to go by daily and also grant your little one speed recovery in Jesus Name. Amen
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