Premature baby coming home on oxygen

[SarahLC88]

My baby girl was born at 33+4, and required surfactant shortly after birth. She then had a few very good days but unfortunately then went a bit downhill and required further optiflow and is now on nasal cannula on between 0.01-0.03 oxygen. It is looking more than likely she will be coming home on oxygen, particularly as we’re just entering RSV season.
I’m just looking for other people’s experiences / advice who have been in a similar situation please.
The one thing we have planned is a Christmas weekend in December at a hotel in London. Will this be do able with oxygen?
Thank you.

You must be feeling so stressed and exhausted - just wanted to say we brought our twins home in similar circumstances 16 years ago and all was fine ... we did however - keep visitors and visits to a minimum to protect them from viruses and bugs - we didn't take them anywhere and kept visitors to a minimum - obviously making sure they had washed their hands and no little ones near them

Thanks so much for your reply. How long were your twins on oxygen for?

On and off three months but the winter was tough as they got sniffles and colds which set them back . They're 16 now and 6 foot four so honestly I hope you can take some solace in knowing they grow quickly! My best advice would be to put your little family bubble first regardless of who it puts out .. we were very adamant about keeping people at arms lengths whilst our little ones built up their immune system

Congratulations on your lovely LO. I think I'd skip the weekend in London and try and do it in the Summer instead.

Agree with PP, it's probably best keeping visitors to a minimum for s while until they're a bit older and stronger

We are currently in nicu and will be going home in 0.1 oxygen. I've just taken delivery of our home oxygen supply and it all looks really straightforward. Depending on what level of oxygen you go home on depends how long your canisters will last but we've have three small portable canisters. There's no reason for you to cancel plans even if it means taking your larger canisters for an over night stay if you have the means of transportation.
I'm not a particularly strong person and lifted one from our hallway upstairs, they are weighty but not as heavy as I thought they would be
I'll try attached a photo for you x

I had a prem baby (born a few weeks earlier than yours). They were not on oxygen, but we were told that because of their general vulnerability due to being born prem, we should hold off busy places, baby groups, etc. until after their first winter. It was quite isolating (I was a FTM), but we followed the advise.

Some other babies I know from NNU who had struggled with breathing issues, ended up back in hospital with RSV, resulting in a hugely stressful time for the parents. Because of all this, I would see if you can postpone the London trip a few months until baby is stronger. London in Christmas time is quite busy. I think the risk to health should weigh heavier here than practicality.

I hope some others with more relevant experience will come along. In the meantime, so exciting baby will come home! Enjoy the moment!

I dont have experience with babies on oxygen, but do know that you have to be extremely vigilant about any open flames near the oxygen. So no smoking, candles etc. Also the nasal cannulas do chafe the nose skin, so ask the nurses for recommendations on what to do about that to try and prevent or treat it

That reminds me of a time I was in Hospital on oxygen and another patient, also on Oxygen, lit a fag!

@SarahLC88 how are you all getting on now?

@SeaToSki we had our oxygen delivery yesterday and the community nurse said about smoking and vaping being an absolute no go.. the delivery man also asked about smoking so I said my partner vapes but I've told him the rules. He said ah you'll be fine with a vape I vape in the van when I'm delivering 🤣
People are bonkers

You are joking surely? 😱

@SeaToSki nope deadly serious! Clearly likes to live dangerously

Our 30 week premie came home at 35 weeks on oxygen almost 30 years ago. She had to be 4lbs first!
She was on oxygen until she was almost 5 months old. Its fairly easy to manage once you get your head around it but you do need to be organised...you cant run out and need to ensure you always have a spare cylinder.
NHS provide a small cylinder for travelling which is helpful but, personally, we limited the number of people she came into contact with to avoid infection.

How are you getting on Sarah?

If you go ahead, it depends if you're on cylinders overnight which you can take with you, or a condenser machine in which case you need to arrange with the appropriate O2 company to deliver it to your hotel. I don't see why this would be an issue in a hotel, it can be hard work if you do air BnB etc.
I'd keep the rain over over the buggy as much as possible, take spare O2 just in case and check where the nearest urgent unit is just in case.

Honestly, I don't think a Christmas weekend in a hotel would be all that fun with any baby that's only a few
months old, let alone a prem baby on oxygen.

I'd postpone the weekend until next year and enjoy the time at home with your new baby.

Hi all
Sorry to hijack the original post but I know a lot of replies were from parents who had babies come home in oxygen.
We came home in 0.1 on Wednesday 1st November. I started our first sleep study in air at 11pm last night. I've been completely on edge. He dipped below 90 11 times in the first hour (he did bring himself back up to low 90s) but the final straw was when his sats went to 77, I just could even wait for him to try being himself up
He was back in oxygen by quarter past midnight.

My nerves are still going (it's 4am) as I've left the machine running but I just want to know how you all managed it. There is no way I can monitor for 12 hours when I feel physically and emotionally exhausted after 1 hour. Taking shifts isn't an option for me (sounds awful but I just couldn't trust anyone, I'm sure they will be okay but I'm a control freak and it has to be me just incase)

What was everyone else's experience with sleep studies?
Thanks in advance xx

@ktsch I'm so sorry, I can't offer Andy advice but hopefully this will bump for you.

If you don't get any replies, it can be a bit quiet in here, I'd maybe start your own thread in _chat, it's busier in there