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Premature birth

Connect with others and find premature birth support.

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Original poster

Bringing prem babies home

13 replies

WhatKatieDid · 19/06/2019 00:09

We have just brought our extremely premature baby home (24 weeker) after 4 months in NICU. He has done amazingly well, and I am under no illusions as to how lucky we are. But I have found bringing him home really hard, and not in the ways I thought I would (eg anxious about his breathing etc). I have started to feel so sad that he had that start in life, whereas when he was in NICU I just focused on how well he was doing. I remember times when I felt so happy he was doing well and now feel really sad that I felt it was good because it was actually horrible (the CPAP mask). I feel very guilty that he has had to endure so much and that he had to be delivered that early and those feelings have got worse since bringing him home. I am also missing the NICU environment, which sounds crazy but it was home for months and I almost feel homesick. I am so happy he’s home and well, don’t get me wrong, and count our blessings every day, but I am struggling too. Does/did anyone else feel like this?

OP posts:

CritterTamer · 19/06/2019 09:12

Hi OP, congratulations on your beautiful baby!
I just wanted to let you know that you're not alone in feeling this way - my twins were nowhere near as prem as your baby (34 weeks) and only spen't 3 weeks in SCBU, but I also have the feelings of guilt over how they had to be delivered (by crash caesarean following an abrupted placenta), meaning I didn't get to see them for 2 days after the delivery and they missed out on my colostrum those first few days. I also miss the SCBU environment - after having such incredible support for 3 weeks I felt suddenly abandoned, unsure and alone when we went home, and was terrified that they would just suddenly stop breathing at any moment. We've been home together for nearly 3 weeks now and it's getting better and easier so you will get there!

Original poster

WhatKatieDid · 19/06/2019 16:06

Ahh thanks. I'm sure it's all normal. I think where I was so focused on getting him well and home, now that he is it's actually hitting me how horrible it all was and how horrible it must have been for him. Probably just a processing thing. Congrats on your lovely twins, I used to feel so sorry for the mums of twins, it was bad enough with just one baby!

OP posts:

Bessiebigpants · 19/06/2019 16:09

Have you made contact with bliss the perm charity they can offer lots of support I remember reading that lots of premature mums actually have undiagnosed ptsd and early support really helps. Nevertheless congratulations on getting your baby home it's a real challenge for parents too surviving the Nicu so be kind to yourself

Original poster

WhatKatieDid · 19/06/2019 23:05

Bliss were very present in the hospital, there were a couple of reps who were there weekly and were lovely. Maybe I will get back in touch, thank you.

OP posts:

MrsXyzAbc · 19/06/2019 23:08

My friend went through the same as you and has decided to talk to a counsellor about it which I think is a great idea, and you should consider it too

prematurebabymom · 19/06/2019 23:38

Hi,
Congratulations! You did it!!! He is home! Well done! So happy for you.

I brought my 24 weeker home this March after 5 months so I can relate! It gets a bit easier with every day. With time you will get used to your new "normal" life.
He won't remember anything that's what keeps me going. Focus on his learning and development. He need you now more than ever. Physio is crucial on daily basis.
Let me know if you want to keep in touch or anything.

XXXX

SleepingStandingUp · 19/06/2019 23:43

It's so hard OP. DS was only in 12.5 weeks and across 5 different hospitals (well 3 but two twice) but at 1 he was in for 4 months solid in the same ward. I cried when we left and it wasn't necessarily tears on joy!!

I'd recommend talking to someone like a kiss or even your GP about counselling. It's perfectly normal to feel how you feel, but thst doesn't mean you have to tough it out alone.

It gets better. Sometimes I think about how hard those 18 months were and I wonder who DS would be if his journey had been different but it will ease as he grows and develops, scars and memories will fade x

wibblywobblytummytumtum · 20/06/2019 00:05

Congratulations on your baby! You’ve come through an absolute nightmare and are still standing. There’s so much to be proud of!

You really aren’t alone in feeling this way. My DD, now 8 was a 28 weeker. After the initial relief of having her home and her being OK, I remember feeling very sad at her start in life and like you, felt bad about everything she had to endure in those first weeks.
It does get easier with time and as you watch them grow and develop, their less than ideal start begins to matter less and less. As PP said, they really do not remember any of it!

Spend this precious time enjoying your baby because before you know it they’re at school and you wonder where the time has gone and what you were worried about in the first place !

Original poster

WhatKatieDid · 20/06/2019 22:41

Thanks everyone, it's really helpful to know others felt/feel the same. I think counseling would probably be helpful, just to get it all out to someone who has to listen!!
PrematureBabyMom - what physio do you do?? We haven't been instructed on that, just vitamins and meds!
He's a lovely little baby, I'm in awe of him, and trying to just remind myself how far we've come. The institutionalization thing is funny isn't it.. you're desperate to get out but it's v daunting actually leaving. It becomes home, like it or not!

OP posts:

prematurebabymom · 21/06/2019 02:35

Hi,

Our hospital put my baby under a physio once every 3-4 weeks since discharge up until she will be walking etc.
I have been shown exercises to do with her every day to strengthen her muscles, like neck control, legs movements, following objects, grabbing and holding objects... Things that a normal baby would do without thinking, micro preemie needs lots of help.
It works wonders! It takes time, not gonna lie but it works.

There is lots of help available but we need to push a bit and ask for it so try. We will also see dieticians also in the next two weeks.

I hope this helps. Xxxx

Original poster

WhatKatieDid · 22/06/2019 22:23

Ah ok, no we haven't been given anything like that! I'll ask the community nurse when she comes next week about that. Thanks for the advice. How is your little one getting on? This is our fourth child so I'm quite confident with babies and all their funny ways but our first even remotely prem, so it's been a whole different ballgame!

OP posts:

prematurebabymom · 23/06/2019 10:16

Hi!

She is doing well. Came home without oxygen, growing but weight gain is our problem since birth. She had two bowel surgeries so since her bowel is shorter the amount of milk she can have is small and the absorption is not the best. But we are going to see dietetic team to see if she can have different milk etc.

I would go to ur Paediatric team if the nurse won't help. It's worth a try. I have one full term baby too so this also was a big shock to us. We want to try everything not too have any regrets later, that we could do more.
I hope for the best. We have better and worst days but for the most part I'm happy she is home away from hospital.
All the best!

Lauren850 · 01/07/2019 00:33

Hello OP, do get some counselling- or support from Bliss. My dd is 16 now and when she was born there was much less awareness of the emotional side of premature birth and how it affects everyone in the family. Looking back i can see just how huge the impact was and really wish I'd had some help instead of struggling with it alone. V best of luck!

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