Oxygen hand hold

[LM88]

Hi,

Anyone want to share any words of support/advice for a NICU mum due to be bringing her little girl home on oxygen.

24 weeker and been in NICU for over 3 months so anxious/worried/nervous/excited

I have heard you can apply for DLA, can you? Is it easy?

travelling with oxygen? How did you find it, is it heavy etc.

I just want a general chit chat to help with adapting to our new way of life for how ever long it maybe.

TIA x

Hi,

didn’t have that experience, but didn’t want to read and leave. Congratulations on your little one and I hope someone here can provide you some information.

Hey,
We bought our little girl home on oxygen last July and she was on it until mid Sep. You end up adapting to this new way of life and it’s not as bad as it initially seems. How are you finding it?
The DLA application wasn’t too bad for us as we had the homecare nurses to answer any questions and support the application. Also apply for a blue badge as that helped us when getting out and about. And I managed to take my daughter for walks alone after a while with the portable oxygen tanks.

Honestly you’ll look back and wonder how you did it but the time just goes so fast and it ended up being such a short period of time for us.

How is she doing with her oxygen now too?

Hi! @Ap812 sorry for the late reply been meaning to respond.
We came home on Saturday, its so daunting! Its been okay so far the thought of going out and about is scary & we have to go back to the hospital tomorrow so that will be our first journey out!

The nurse came today and filled in her part of the application. We dont know how long she will be on it for - its just a whole new chapter coming home! How is your little girl doing now x

Meant to add @Ap812 what was the weaning process like? Did they check and wean regularly? X

Hi, so glad you’re home. How has it been? It probably feels so surreal to be home and start life together after spending so long in NICU
How was taking her to the appointment? It gets easier the more you do it, you’ll be experts before you know it. It’s just scary coming home from the NICU and parenting without the nurses support, but I’m sure you’re doing amazing.
She is doing fab and 1 years old now so our whole journey was almost a year ago and feels like a distant memory.
They weaned her by keeping her ‘in air’ for periods of time so it started with 30 mins and built up to 12 hours over 6ish weeks. And the nurses came down once a week or maybe twice to check how she was doing when the time ‘in air’ was increased. But I also know of someone who’s baby was weaned by reducing the amount of oxygen he was on by 0.01 every week and that was a similar length of time to our weaning process. They also did sleep studies in between which were a bit of a faff. Do you know what weaning method they’re planning on using on your little one?

Mama of a 23 weeker who came home on oxygen here! She is now 4 years old.
I see you've been home for a few days, how are you finding it?
Honestly it really isn't as bad as you think, the thought of it is definitely scarier than it actually happening.
I remember another NICU mama tell me that I will forget to turn the oxygen on at some point. I thought, no way will I.... But I did. You probably will too, but do not panic, they will be fine, it's a lot to think about!
Tubie cheeks do really cute stickers for baby's face too in lots of different patterns :)
Remember to apply for DLA and a blue badge also, the equipment is a pain to lug about!
Congratulations on bringing your sweet baby home 🥰

@Ap812 It has been good, nice to be home and comfortable but also mixed with anxiety. We have the owlet which has been good. What level of oxygen was she in when you came home if you dont mind me asking? How were you when she came off it all, did that give you worries? I am not sure on the plan yet, we have been referred to the local childrens hospital so waiting for an appointment from them.
We have lots of appointments coming
up though like eye tests, hearing tests and meetings with the physio.

Hi there. Pleased to read that you are all home and settled. I was on high alert for months when mine came home (24 weeker, now 16 years old). Especially when they took the sleep alarm off me - I actually cried.

You've probably already got into a routine and know how to get around with the oxygen tank (ours went under the pushchair on the rare occasions we went out).

Before you know it the oxygen will be on so low that they'll not need it. It will soon come around. Big hugs. x

@07whatever thanks for replying, it doesnt half help me chatting to people who “get it” the whole NICU journey is intense and then coming home just isnt the same as with a term baby. Its like starting all over again, feel like a first time mum again.
Its been less than a week so im sure like anything the more I get used too it the easier itll be, them nasal cannulas - i feel like i need a training course. We do them, stick them down think they are great and then they keep coming out 😵‍💫
I seen those tubie stickers, how adorable are they! Yep, im in the process of the application form 🙈🫨

thanks for messaging everyone & taking time to have a read - @07whatever @Ap812 @Matthew54

@johnworf we are still trying to find our feet with it all, going between upstairs and downstairs is enough but we have said this weekend we will try and go on a small walk somewhere.

I think i feel more worried doing things on my own, like what if i dont switch something on/off or forget something.

As the weeks pass itll get easier - shes home and thats whats important. So happy to hear they are now 16! What a journey. Thanks for your message

You'll find your rhythm. I kept a spreadsheet of meds, feeds, appointments etc etc so I didn't forget. So many appointments! It seems weird writing that down but it helped me to know where I was at and I felt organised. When you have seemingly so much to do and remember, it really helped.

I rarely went out with him in the first two years. I was so scared he'd pick something up even though he had the RSV vaccinations. I was hypervigilent. I did end up with anxiety - and I don't want to scare you - but apparently it's very common in prem parents. Unsurprising given the amount of worry that's involved. If you do feel overwhelmed then please don't ignore it.

💐

Yes, I had forgotten about the blue badge and DLA. Absolutely apply for it. The blue badge helped so much going to hospital appointments and being able to park near to the entrance. I think I wrote 'on oxygen' in every answer of the DLA and got high rate for 3 years. If you aren't working then you can apply for carers allowance too once you have the DLA and it's middle or high rate. It all helps.

We’re 15 months down the line and still on 0.2 oxygen, for some reason my girl won’t let go of it!
It’s now very much a routine part of our lives. My daughter’s still been to groups, soft plays, UK holidays etc and the oxygen has never held us back.

@Anothnamechang we are currently waiting for an appointment at the local childrens hospital to discuss next steps. Noones in any rush to see us, which is frustrating.

We have the owlet so I know she could totally handle being weaned even a little.

I am hoping with the summer holidays it is going to increase my confidence as we need to also entertain our other girl so we will have to get out and about more. Once shes back at school im hoping to then start some classes.

Thanks for your message so glad to hear it hasnt affected your family, i vow to do the same! X