# Looking for some feedback on my preemie loss



## happypanda

I hope you ladies don't mind me posting here as I've just lost my son and could really use some feedback from other mothers. Loss is mentioned here, so if that upsets you, please don't read on. 

My waters broke at 21 weeks and 6 days, I gave birth at 25 weeks and 6 days, my boy weighed 1lb 15oz, and seemed healthy enough. He had a grade 3 IVH, and still seemed OK, he came off vent in 2 days, on CPAP for 30 hours before he was back on vent. Then he started to deteriorate pretty fast. He self extubated a couple of times but struggled on CPAP for more than a couple of hours. He ended up, at 17 days old, (the day he died) on 100% oxygen on vent, the highest breath setting and highest pressures allowed, and his o2 sats were still only high 70's and dropping slowly. He was needing bagging frequently, and had needed full resuscitation once. 

Initial lung cultures showed pseudomonas, and pseudomonas on his long line too. He was very swollen, his eyes were swollen shut. They did a blood culture and put him on antibiotics. Another baby on the unit was on "barrier nursing" but no one would tell us what for. He started getting little sores on his hands because the blood wasn't flowing properly. I assumed sepsis, his CRP was 88!!! On the day he died, he was also having seizures, he was already on 2 types of sedation, and they put him on a third one for the new seizures. His IVH was trying to resolve apparently, and causing swelling on the brain, but they refused to tap him. They told us, with his sats at 78, and full vent setting, there was no hope and to stop active treatment. I disagreed and spent a few hours watching him, and he was still having full body seizures, even on 3 types of sedation and morphine. He also felt cold to the touch. So i told them to remove his vent, so I cold hold him as he died, rather than have him die in the incubator, he lasted only 15 minutes!

Later his blood cultures apparently came back negative...for anything? Despite his CRP, and everything else, I had assumed he had sepsis. Now I'm not sure what to think, could he have recovered, anyone else's preemie have full vent with 100% o2 and come out OK? Or am I just second guessing because of the grief? I want honest feedback, as I know the risk of having another membrane rupture next pregnancy, and needing to go through all this again and knowing what to do differently. 

Thanks and sorry if this is not the right place for my questions.


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## freddiesmum

i cant offer any advice or explantion but i would just like to say i am so so sorry for your loss xxx


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## KookyK

Happy panda, I don't know the answers to your questions, but I wanted to say that I'm so so sorry for your loss of your son. My heart goes out to you. I hope someone who knows more about the medical side of things can give you an opinion.


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## littlestar85

I don't have any experience of NICU so wouldn't know how to answer your question, but I just really wanted to say how very sorry I am for your loss. Wishing you all the strength, love and support in the world.

xxx


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## sherryberry79

I am so sorry for your loss. I can't offer any experience of a baby on 100% ventilation, but my father died of lung cancer. At the end he was fighting an infection and was put on the ventilator, every day his ventilator pressures would need to be increased, and when he got to 80% the doctor told us that 100% is as far as they can go, and if that was still not enough help for him, we were at the end of the road. I am guessing that it must be the same for babies?
Sending you much love and best wishes, I can't imagine what you're going through :hugs:


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## pink.crazy

I have no advice to offer hun, but I just wanted to say I'm so so sorry for your loss xx


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## AP

I wish I had the answers, but as mummy you did the best for him hunny, don't ever question that :hugs: xxxxxxxxxxxx


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## v2007

Oh Sweetie, i am so sorry for your loss, i can't offer any answers only :hugs:

V xxx


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## PrincessPea

Very sorry for your loss dear. You did what was best for your baby, dont ever forget that. :hugs::hugs:


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## Dasy25

:hugs::hugs::hugs::hug: Sorry for your loss hunni and sorry i cant offer any advice to you.


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## cat81

I don't know the answers to your questions, sorry. I just wanted to say that I am so sorry for your loss. x:hugs:


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## mummy3

:hugs:


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## 25weeker

:hugs: :hugs: I am very very sorry for your loss.

I had twin girls and one of my lo's vent was giving her highest pressures and 100% oxygen and they were still struggling to get her blood oxygenated. She ended up having a massive brain bleed and passed away very shortly afterwards.

Take each day as it comes and when you need to cry, shout, scream then do and don't feel bad about it. No one should ever have to experience the loss of a child. Xxxx


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## reversal

I'm so sorry for your loss :hugs:


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## Marleysgirl

:hug: ....


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## xxClaire_24xx

sorry for your lose. I can only say that when Ellie was in her incubator on day 3 she had what our hospital call an episode and she stopped breathing for 10 mins and needed resusitated and full oxygen for 2 days and then she was eased of it I think that they gave her the oxygen as a precaution as she was fine after that and didnt have another episode, not sure if that helps or not xx


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## Twinsmom

I am so sorry for your loss.

We didn't have to have our kids on 100% oxygen so I can't help with your question


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## vermeil

I`m so very sorry for your little one *hugs*

I can perhaps compare some, in the hopes it help... my son was born at 27+0 weighing 1lb4oz, so similar to your precious one. They started him on CPAP but within 24 hours his lungs couldn`t handle the extra pressure of an open PDA and his lungs ruptured - he had a major hemorrage and they had to ressuscitate him then intubate him.

He was placed on a high frequency oscillator, at 100% oxygen. A scary machine the size of a fridge that makes your baby shake like a leaf. Not a pretty sight. You don`t mention it so I don`t know if your little one was on it, but it`s essentially a system that breathes for the baby, making the air vibrate at such a high frequency that the gas exchanges happen in the alveoli without the lungs needing to inflate, giving them well-needed rest. The inhalotherapist explained it was actually bad for the lungs and could cause complications but the alternative was... well, nothing.

He stayed on that for over a week. Then regular ventilation. Then they tried CPAP for a few days. Then back to ventilation for a few weeks, then when his lungs got tired again, back on high frequency. He was on so many systems so many times, I got to know the machines so well that I felt like I could give a course on them ha. 


He essentially played yoyo with O2 requirements until finally we were at 50%. Then he plateau'ed at 35% for a while. Some days his saturation would just drop to 30, then climb back up for no apparent reason. When we finally reached 35% oxygen he was stable for a week, then for 12 harrowing hours he suddenly needed 100% oxygen again, for no apparent reason. Then he went back to 35%. I got so tired of the doctors never really knowing WHY these things were happening. They would just monitor his state and react accordingly.

THEN it took a few more weeks of gradually getting that down to about 25%. Then just straight O2 for another few weeks. 105 long days later he came home. So far he only has mild health issues *knocks on wood* It`s actually his first birthday today.

I understand soooo well your frustration regarding sepsis and other infections. My son got quite a few during his stay, and asking for a cause only gave us vague answers like 'oh no environment is 100% aseptic' etc etc. Asking different doctors, nurses, or even peeking at lab results ourselves often gave conflicting results. He did had sepsis. I think he was on regular ventilation at the time. He just looked so weak and tired. His O2 requirements went up but not by that much. 

For all our talk of 'modern medicine' I often felt treating my son was half guesswork, half trial and error. They tried a spinal tap during his sepsis, only to mess it up (getting blood in the sample, essentially making it useless), and in the process making him so uncomfortable (They roll up the baby in a ball ugh) he desaturated so much they had to bag him. His blood parameters varied so much he had regular blood transfusions, platelets etc - i lost count after 10 heh.

I don`t know about pneumodomas or CRP (inflammation indicator?). I`ve seen other small preemies be on 100% oxygen like mine but they were all saturating above 90 at that level. I`m sorry your little one didn`t respond well to it. I`m glad to hear you had 17 precious days at his side. I wish you the best and please feel free to pm me if you want to talk.


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## Foogirl

It is so sad when these little ones cannot survive. And there will always be more questions than answers. I'll bet there is not one woman in this little corner who hasn't had a number of "what if..." questions about their premature births.

You deserve to know, at the very least, what the medical issues were and why things happened the way they did. You have the right to meet with your consultant to talk through what happened and if you feel they are baffling you with science, ask them to be clearer. There are enough questions which will never be answered, without you having to wonder about the things which can. :hugs:


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## happypanda

thanks everyone. I have to say i was never offered the oscillating vent, which surprises me, from my research now, I think it could've helped him. he was never on it, but i do think it was there, just not turned on? I just had no idea, they told me there was nothing else they could do. i just keep going over that day in my head. wish i could live it again. :(


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## Foogirl

It must be so hard for you:hugs: I'm sure they did as much as they could for your LO. They are all so different and what works for one, may not work for another. They will have assessed your LO and did what was best. There are always stories of negligent doctors but they are few and far between. Sometimes we just have to put our faith in them.
:hugs:


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## happypanda

i agree foogirl, I don't place blame anywhere, just I wish I had done more research so i could've asked more questions. They were actually really wonderful at the SCBU, they all got really attached to him, and seeing them all cry when he died was really touching to me. I couldn't have asked for better nurses or doctors.


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## 25weeker

happypanda said:


> i agree foogirl, I don't place blame anywhere, just I wish I had done more research so i could've asked more questions. They were actually really wonderful at the SCBU, they all got really attached to him, and seeing them all cry when he died was really touching to me. I couldn't have asked for better nurses or doctors.

I often think what questions I could have asked and after her sister spending 14 weeks in neonatal I know a lot more about the different methods, treatments etc and I often wonder what they had done for Rebecca because the first two weeks of the neonatal are patchy for me. I think it was probably a coping mechanism.

I considered getting her notes but don't think I would achieve anything and only upset me because as part of the transfer of Holly I was given discharge notes and it contained the treatment Holly and Rebecca had at birth and it wasn't nice reading.

PM me if you ever need to chat xxx


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## HCB

I'm so sorry to hear of your loss and my heart goes out to you because I know what it's like. I gave birth to our twin boys at 27+4, Lucas and Morgan, who were 2lb 6oz and 1lb 13oz respectively. Morgan was actually 3 weeks behind in development so was more like a 24 weeker and unfortunately we lost him when he was 18 days old. He contracted NEC and they did everything they could to save him but it was just too overwhelming for his little body.

Not a day goes by when I don't think about the what ifs and what could I have done differently. I blame myself for so many things because I was his mum so I should have been able to do more, or at least that is what I keep thinking. I have got to the point where I realise that he was so poorly that had they managed to get him to the other hospital, had they been able to operate on him and had he survived all of that he would probably have had a number of problems. It doesn't stop me crying most days. It doesn't stop me from wishing things could have been different but it does help me come to terms with things somewhat. It doesn't help me understand though. I don't think we ever do.

I won't lie, it won't be easy but you will come to accept what's happened. You will think of him every day of your life and no one can take away those precious few days from you. Ask the consultant any questions at all if you feel that it will help you and they will answer them as well as they can. Even if you can't face it now they should be able to help you further down the line if and when you want it.


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## vermeil

HCB said:


> Not a day goes by when I don't think about the what ifs and what could I have done differently. I blame myself for so many things because I was his mum so I should have been able to do more, or at least that is what I keep thinking. I have got to the point where I realise that he was so poorly that had they managed to get him to the other hospital, had they been able to operate on him and had he survived all of that he would probably have had a number of problems. It doesn't stop me crying most days. It doesn't stop me from wishing things could have been different but it does help me come to terms with things somewhat. It doesn't help me understand though. I don't think we ever do.

HCB this is exactly how I feel also, as do probably most of the wonderful ladies on this board... though a year later now, and there are sometimes full days when I don`t think of those horrible moments when we thought we would lose him, and the countless things I would have done differently, the many questions I didn`t ask... The psychologist at our nicu said parents of preemies all grieve, even if their little ones make it. I understand what she meant now. I think in the thick of things we go in survival mode and everything goes by like a blur. Then when things settle down we finally allow ourselves to relive the memories and finally live all those emotions. Despite us being lucky and our 'adventure' ending well I still cried daily for months.


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## Srrme

I can't offer any advice, but I'm so very sorry for your loss. Big hugs.


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## ermm23a

As others have said, every baby is different. Before they took my baby I had a chance to meet with neonatologist and while he was very kind, he told me he really couldn't tell me much about the specifics of my son until he was born bc each baby is different and some may not need oxygen while others at same gestation will. 

Nothing you could've asked would have changed the outcome for your little one. If you need more information about exactly why he died, then I would go and talk to the doctors and nurses and ask away. It may help you with the grieving process. 

I'm so very sorry for your loss. My heart goes out to you and your family.


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## Bec L

So sorry for your loss x


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## Hotmum

I am so sorry for your loss =(

I have no answer I shouldn´t be reading since my LO still in NICU, but I just wanted to offer you a big and tie hug...

You did the right thing ...


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## mylittlebud1

Hi,

I had 27 + 2 wk prem baby. She weighed 2lb 8oz. She was ventilated for 5 days then went to breathing on her own, i'm not sure what % level she was on though. I can't imagine how hard it was for you to make that decision as i have been fortunate, but from my experience i believe the specialist would've done everything they could of for your little one. 

I can't sit here and say what is right or wrong but i think you are one brave mummy and it sounds like you made the right decision for your baby.

So sorry for your loss. xxxxxxxxxxxxxxxx


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## ems1

Sorry for your loss. x


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## Oman25

Nothing I can add more than what other said,

I am so so sorry for your loss and God will give you one I'm coming future.


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## SugarKisses

i am so terribly sorry for your loss of your son. I have had 3 premature babies, my 1st baby, Sophie, died during labour at 24 weeks and 2 days and my 2nd baby, Luke was born at 24 weeks and died aged 2 days old to pseudomas. He was very ill....

And my 3rd baby arrived at 26+6 and thankfully made it and helps me smile every day. If you want to talk to me, im here, just send me a message, I understand how your feeling xxx


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