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Bringing a baby home on oxygen?

(24 Posts)
NewToAllThis11 Mon 03-Jun-13 16:10:51

Hello all

This is my first time posting in this section and i'd be really grateful for any advice or others' experiences.

Bit of background - DS1 was born at the end of March at 27weeks, due to placenta problems. He had severe IUGR and weighed 1lb 7oz. He's now 36 weeks old, nearly 4lbs and has done amazingly well considering his difficult start. I won't go into huge detail because otherwise this post would be enormous, but there were no cots available at our local NICU so we spent 5 weeks away from home when he was first born and then were transferred when a cot became free. I had no indication that anything was wrong until a scan that showed up problems with the placenta and then he was born by emergency CS the following day.

He's not ready to come home yet, but it's being discussed more by the doctors and nurses looking after him. He has Chronic Lung Disease, which apparently sounds a lot worse than it is and still requires oxygen ( he's on a nasal cannula at the moment), although his lungs should thankfully be fully recovered in a few months. I've started breastfeeding, which is going quite well and he's now in a cot, wearing clothes and generally having a nicer time than he was when he was born (as are my DH and I).
We've been told that he might need to come home still on oxygen, depending on how he does over the next couple of weeks. Does anyone have any experience of this and what it's like? I'm desperate for him to come home, but I feel a bit worried about how the oxygen works and what this will mean in terms of leaving the house etc.
He really is our miracle baby and I'm sure we'll cope after everything else we've been through, but any experiences would be really appreciated.
Thanks x

Sidge Mon 03-Jun-13 16:20:25

Congratulations smile

My DD2 came home with oxygen and was on it for a year (different reasons to your baby) - it was a while ago but I can't imagine things have changed significantly.

We had a home concentrator, which was a machine plugged in to the mains with yards of tubing so we could move freely around the house. We had a cylinder at home in case of power cuts, and a portable cylinder for going out. All supplies were delivered to us and maintained by the company, and we received a refund on the electricity used by the concentrator every ?6 months I think it was. We had to inform the local fire brigade that we had home oxygen and put stickers near external doors saying there was oxygen in the house, as well as car and house insurance companies (but it didn't make any difference to our premiums).

It took a bit of getting used to but it was fine, honestly.

NewToAllThis11 Mon 03-Jun-13 16:27:25

Thank you, Sidge, that's really helpful and good to hear that it wasn't too difficult. Can I ask what it was like going out? Do you just keep the cylinder under the pram?

Sidge Mon 03-Jun-13 16:38:51

Yes I had the cylinder underneath. Going out was fine, it took a bit of planning and the cylinder was heavy, it had a backpack-type carrier so I could sling it on my back for when I was getting her in and out of the car, or walking around with her!

The only crisis I had was when my car broke down and I was stuck in a car park with a small cylinder, but I told the breakdown people and they made us a priority so got someone to us ASAP!!

I believe you can now apply for a blue badge if your baby/child under 3 needs bulky medical equipment, it varies between councils but worth checking. We couldn't when we had DD2 and it would have been a godsend!

amymouse Mon 03-Jun-13 21:36:32

Hello, I had a 27 weeker who also came home on oxygen until she was around 7 months old. She is now 2 1/2 yo and mad as a box of frogs! You should be entitled to a blue badge and also from 3 months old can apply for DLA (and possibly carers allowance depending on your earnings). There are also funds like the Family Fund and React who also give practical, financial assistance etc if needs be. I also had the backpack thing, otherwise shoved it under the pram and trollied off. The only problem I ever had was we came home during an exceptionally snowy winter and thus was a nightmare steering an already heavy pram. I think I was told to also contact the local fire service so that should we ever need help we'd be put down as priority. But within a few days/weeks you are so used to it it is all second nature. I only went flying once comically after tripping over the wire; most of the time I learnt to step around it. But normally the unit will be so thorough in briefing you on coming home and letting you room in with the oxygen you will be pros before you've even left smile x

NewToAllThis11 Mon 03-Jun-13 21:55:21

Thank you for your replies. It's great to hear that it's not too difficult to manage the oxygen and I'll definitely look into the Blue Badge. Great to hear of DCs born at a similar age who are doing so well now too! X

NowFourSpuds Mon 03-Jun-13 22:22:36

Congratulations on your ds, it sounds like you're all doing great!

One of my 23 seeker twins came home on oxygen, and is still on it at 3 months corrected, but we are hoping she will kick the habit during the day next week.

I was terrified of bringing a baby home on o2, but it's really simple, as pp have said. We have 3 large tanks at home, one upstairs one downstairs and a spare & 3 portable tanks. Its amazing how quickly you adapt to having it around. The first time we left the house it seemed difficult, but soon it's just part of all the other 'stuff' babies need!

We had to inform our house & car insurance companies as well as the fire service. BOC who deliver the oxygen are so reliable, we just phone and reorder & its delivered the next day.

Have you seen the bliss booklet about bringing a baby home on o2? I found it very useful.

You'll have your DS home before you know it x

NewToAllThis11 Wed 05-Jun-13 18:37:16

Thank you! I'll have a look at that leaflet too. We're kind of assuming that he will come home on it, so that if he doesn't it's a bonus. One of the nurses was saying that the lowest oxygen he can come home on is 0.1, whereas they can go lower than that in the hospital. He only went over to nasal cannula on Monday and has been between 0.1 and 0.4 since then, but mainly 0.1. It sounds like they wean very slowly at home so am hoping he might be able to get off it whilst still in hospital as he still needs to get established with breastfeeding, so won't be home for at least another 3/4 weeks.
Congratulations on your twins and hope your DD comes off her oxygen soon x

CelticPromise Fri 07-Jun-13 10:39:35

Congratulations New. Sounds like you've had a similar start to us- DS is a 27 weeker born at 1lb 4oz due to severe IUGR. He came home on oxygen and stayed on until he was 10 months old. It took a bit of getting used to but was no problem, it was just so great having him home. We had a concentrator and went away to see family etc, just took it with us. Also back up cylinder at home in case of a power cut and small portables for out and about. We went to plenty of baby groups with the portables so there is no need for it to be very restrictive.

My DS is coming up to 4yo and has done fantastically well. Not even a chest infection for over two years. Sounds like your boy is doing fab, how's the bf going?

NewToAllThis11 Fri 07-Jun-13 15:35:51

Hi Celtic, and thank you for getting in touch. You're the first mum I've 'met' who had a baby at similar gestation and weight due to IUGR. It's great to hear that your son is doing so well. Do you mind my asking about his development - is he still small for his age or has he caught up etc. ?

My boy is doing well although he's got a bit of a cold which has meant that he's needed to go back on to optiflow for a few days. I think it's almost certain that he will need home oxygen, so good to hear that you managed ok with it. I think my main issue is that I feel like I want to get on with our lives when DS comes home and that means not needing to explain to everyone why he is on breathing support. I think I'm just going to have to get over that though, and I'm also really proud of him for everything he's been through.

Bf is going quite well in that he's really interested and latches straight on for 10-15 mins, but thats generally only once a day at the moment and the rest of the time he's being tube fed. He's really hungry though so am hoping it won't be too long until he's bf more and more.

When did your DS come home? We still have a little while but am hoping it won't be too long after his due date.
Also (and please just ignore this if it's too intrusive) but do you know why your son had IUGR? My placenta wasn't working properly and I've been tested for thrombophilia as a possible cause but am waiting for the results. Apparently I would need to take aspirin and have heparin injections in any future pregnancies but they can make the likelihood of having another IUGR baby much lower.

CelticPromise Fri 07-Jun-13 18:23:47

Hi again. Please ask away I don't mind at all. DS struggled to put weight on for a long time and trundled along under the centile chart. He's now on 2nd centile for weight and 9th for height, so yes he is small and skinny but not noticeably tiny. He's a touch delayed across the board but again it's not noticeable. He's had input from physio, occupational therapist etc but is now discharged.

I had placenta problems too, and the docs think I would have got pre eclampsia had I remained pregnant. I had a thrombophilia screening that was negative, and have been told I will need aspirin and high dose folic acid to reduce the risk of similar in a future pregnancy.

DS was about 4lb by the time he reached term too. He didn't go home until nine weeks corrected because he couldn't get the hang of breathing by himself. He was ventilated for six weeks and still on CPAP by 36 weeks and beyond. He was the first baby in our unit to try Optiflow and he did better once on that. Doesn't sound like you will have as long to go!

Is there any reason you can't bf more often? Feel free to ignore if you don't want to talk about it. I do voluntary bf support at the local unit now. With my DS I started demand feeding in the daytime well before he came home, don't know if that would be an option for you?

Enough rambling from me! Hope you have had a good day.

CelticPromise Fri 07-Jun-13 18:28:22

Just to be clear, when I say DS it's delayed, he's just a little immature and slower to do some things. He's not expected to have any long term problems and I don't think he'll have any difficulty keeping up at school.

NewToAllThis11 Fri 07-Jun-13 21:08:39

Hi again Celtic, and thank you for your post. Your DS sounds like he's doing brilliantly - you must be very proud of him.

My DS was ventilated for about 2 weeks in total but due to two separate problems - lung haemorrhage at 2 days and then sepsis when he was 29 weeks. One of the consultants told me that his lung damage wasn't too bad so I'm hoping that it won't be too long after his due date that he can come home. He's starting to take more interest in his surroundings and need more interaction so I think he feels ready to go home anyway!

That's great that you are supporting other women with bf. i found expressing so hard to begin with but am so glad I persevered now. My DS often roots now and seems interested in bf so Im trying to feed him then, but it usually ends up being at the same time as his tube feed as he's every 2 hours at the moment and he's having quite a lot of milk so is often too full / sleepy by the time I can take him out and get organised. He's going to be switching to 3 hourly feeds soon so I think that will help as he's really hungry now and wakes up for feeds. But yes, I definitely want to bf more often - I think I need to start insisting he comes out and tries when he is rooting!

I saw an obstetrician a week ago and she said I probably had a 1 in 3 chance of having another premature baby, although less with aspirin etc. Also first babies are more likely to be premature. She also said I'd have consultant led care and scans every fortnight from 20 weeks which I found reassuring. Not that I'm immediately thinking about other children before I get the first one home, but I found all that reasonably reassuring ( although I can't imagine enjoying pregnancy again).

I found it quite hard seeing heavily pregnant women at first because I missed out on virtually the whole 3rd trimester and I was thinking that people might not think DS is my baby when he finally comes homr because he'll look like a newborn and I won't look recently pregnant. But I doubt I'll care about any of these things when DS actually does come home because it will be so lovely to finally be with him all the time.

CelticPromise Fri 07-Jun-13 21:46:25

Hey. Our boys really have got a lot in common, we nearly lost DS to a lung haemorrhage on day two, and we had sepsis a couple of times.

I'd definitely feed whenever he seems awake and interested if you're confident. Are they not encouraging about getting him out whenever you like? He can be tube fed while at the breast, that way he will associate feeling full with being at the breast. Is there any bf support in your unit? How are you coping with expressing now? Long term it is flipping hard, well done for sticking at it.

CelticPromise Fri 07-Jun-13 21:50:20

Had to post so I could look at thread again cos on app confused

I've been told I have a 30% ish chance of having a similar problem in future, maybe not so early or severe. I was told by someone on the placental insufficiency thread here that aspirin cuts the risk in half so I will take that!

It's ok and so understandable too mourn your pregnancy. I did and still do. I feel robbed of the end of my pregnancy and my chance of a normal birth. On another level I feel so lucky and proud that DS has done so well! It's ok to feel both I think. thanks

HDEE Fri 07-Jun-13 22:00:32

One of my twins came home on oxygen. We had a low flow meter thing so he was only on between 0.01 and 0.04. He had a sats monitor on all the time so I was able to adjust it whenever he needed it.

It is a pain in the arse, but totally doable, and much easier than traipsing to a hospital every day. We went out and about lots, but be prepared for people to ask questions. My son also had an ng tube in for a little while which made people curious. I was always so proud of my little twins that I didn't mind telling everyone about them.

I didn't like noisy places, just because I couldn't hear the alarm on the sats monitor.

Good luck. FWIW my sons were 1lb5oz and 1lb3oz and have pretty much caught up size wise. They didnt have IUGR though.

NewToAllThis11 Fri 07-Jun-13 22:31:28

Thanks Celtic. That is so coincidental - sounds like they have had similar journeys through NICU. Those first few weeks were so frightening and extreme.

They are encouraging about him coming out for bf but the nursery he is in is really busy and there are sometimes not enough chairs / cushions / screens / nurses to help get the wires sorted when he started rooting. I want to make it a priority though as the sooner he is bf regularly, the sooner he will be home.

The aspirin thing is amazing - I will definitely be taking that if pg in future.

I feel the same as you in terms of mourning end of pregnancy but also feeling so proud of DS and so, so lucky that he was able to be delivered so that he could thrive.

HDEE - thanks for your post. I think my hospital only have home oxygen down to 0.1, rather than lower, meaning that babies have to go home on 0.1 even if they've been on below that in hospital. Sounds like your twins have done amazingly well!

HystericalParoxysm Fri 07-Jun-13 23:11:35

Previous posters have already said most of the practical stuff (fire service, blue badge, concentrators, etc) but I just wanted to reiterate that you do get used to it very quickly and it just becomes a way of life. There is very little you can't do with a cylinder under the buggy or thrown over your shoulder! My child's o2 requirement has fluctuated all over the place due to unstable cld but we've also had low flow meters down to 0.01 at times. These are provided by the o2 delivery company rather than the hospital. Good luck, hope all goes well!

CelticPromise Sat 08-Jun-13 07:56:36

Morning. Re the bfing, could a nurse you trust help you to get confident taking him out yourself? I know it's not easy with wires and alarms but once you get the hang of it you'll have so much more freedom to practise. It's worth getting a specialist nurse or bf supporter to give a bit of advice on positioning and attachment if you haven't had that already. It's also worth continuing skin to skin as much as possible- I didn't do this much once he was bigger but I wish I had since I did my bf training, it can really help.

You could also maybe ask to move within the nursery if it could give you more privacy? DS was in a sort of walk through area in intensive care, I asked if he could be moved to a corner because he was in it for the long haul and they agreed, made it easier to get him out and bf with a bit more privacy. Finally, my unit also sometimes allows mums to room in to establish feeding even if baby isn't ready to go home.

Hope you have a good day.

NewToAllThis11 Sun 09-Jun-13 16:08:46

Hello, and thanks for the replies, Hysterical and Celtic. Yes, I've had some help from a bf specialist nurse which really helped. DS was really awake and looking hungry this morning so I took him out and he latched on for 15 mins which was great. Have just got to build up from this point now, but he's fed every 2 hours so he doesn't have that long to feel hungry. DS is in HDU at the moment and hopefully will be in SC soon so I think that will help in terms of privacy and just generally being a bit quieter for bf.
Am giving him a bath for the first time this afternoon which I'm really looking forward to! Just want him home now though.

Cramp Mon 10-Jun-13 08:30:15

Hi, sorry to hear what you have been through but glad you are at the up point now. One other thing is that you might find they send him home on oxygen night time only. We had oxygen during the day for only a very short time, but kept it at night for about 3 or 4 months - and that really isn't much of a logistical challenge at all.
Do bear in mind that when you take a baby out and about with oxygen everyone will automatically assume they are incredibly unwell (and probably about to expire). Having spent so long worrying about them dying/having all manner of awful things wrong with them of course when you get them home to you they seem incredibly strong (and big!) but everyone else sees them differently.

NewToAllThis11 Mon 10-Jun-13 14:42:16

Thanks Cramp. Night time only oxygen would be much better than needing it all the time, but im really not sure what he'll need at the moment. One of the nurses mentioned that there could be a situation where they could either send him home on oxygen or keep him in hospital for a few extra weeks to get him off it entirely.
I can imagine people will assume he is really ill if I am out with him and he's on oxygen. It's difficult because I'm so proud of what he's achieved but I also don't want to relive the story of his birth and long stay in hospital with strangers!

lotsofcheese Thu 13-Jun-13 16:15:50

Just wanted to add my support: I had a 29-weeker with severe IUGR (1lb 9oz) and also HELLP syndrome due to PE. He came home on oxygen for 24 hours at 0.2 for 3 months, then night-time only for a further 3 months.

Now age 4, he has done really well, despite severe reflux. Never been at A&E with his lungs. He's at nursery & is a little small/immature but doing great considering the start he had in life. He's still on high calorie milk & between 9th/25th centile. He couldn't manage to BF - was too short of breath & not gaining enough weight.

Not much to add as others have been so helpful, but I would say to go in for his sleep study, if they do one - I found it very helpful. And room in before discharge if you can, to get confidence Ruth equipment.

I've just had another baby. Was also given a 30% chance of PE but didn't get it. Made it to 36 weeks & had emergency section due to low fluid volume round baby. My consultant always said: you're going to get something & not make it to term so I was we'll prepared.

. DD had a week in scbu - a walk in the park compared to our previous experience.

I took 75mg aspirin & had fortnightly growth scans, dopplers & weekly BP-urine tests after 24 weeks. Pretty stressful & I won't be having any more, but am so lucky & extremely grateful for my 2 DC.

Hope your DS is home with you soon - please feel free to PM me - good luck .

NewToAllThis11 Fri 14-Jun-13 16:46:30

Hi lotsofcheese - thank you for your post and congratulations on your new baby and how well your DS is doing. You must have been delighted to get to 36 weeks - I know I definitely would be!

It's really nice to hear positive stories of very premature babies growing up, and of (relatively) straightforward pregnancies following a preterm birth.
I'm obviously not thinking of having another LO imminently but I want to get everything in place before we start trying as I'll be high risk now.

My DS is 38 weeks corrected today and 4lbs 4, so still tiny but putting on weight through bf and ng tube feeds. Home is being talked more and more and I'm starting to feel like he'd be better at home now as he's so alert and has started crying for a cuddle and being interested in his surroundings. Hopefully it won't be too long now until he comes home.

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