chronic lung disease

[Newbee123]

Hi guys, just got told today my son had fluid in his lungs and has chronic lung disease. They said there's a chance he might come home on oxygen I'm in bits 😞 has anyone had a similar experience ? I just feel so awful I thought he was getting better. He was born 26+2 he's now 27 days old so he would've been 30 weeks if I was still pregnant.

Hi newbie, that sounds scary. I've no experience myself but wanted to send some love until someone more helpful comes along.

He’s still so small OP, he has lots of growing and getting stronger to do. Mine had chronic lung disease. She managed to come off the 02 just before home time but it was touch and go as to whether we’d need it at home. But - lots of our NNU buddies went home on 02. Sounds terrifying but it’s ok really, just learning to manage it and all of them managed to kick the habit after a few more months.

Hi @Newbee123, I couldn't read without commenting. I was in your position 18 years ago. My son was born at 26 weeks, was told he had chronic lung disease and he did indeed come home on oxygen (tried several times to wean off, kept him in longer - until around his actual due date - hoping to stop it before discharging but to no avail). I was so upset each time I saw other babies step down from the O2 whilst we just couldn't quite get there. Anyway. We adapted to life with the oxygen and it was stopped after a couple of months.
He was prone to colds etc making him 'chesty' when he was small, but he grew out of it. He had absolutely no health issues now as a young man, and it all seems a lifetime ago...
I found it was all too overwhelming at the time if I looked too far ahead. Take one day at a time and try to look after yourself xx

Hiya, my son was also born prematurely- 28+2 and was ventilated then on CPAP for many weeks. He came home at 4 months old (one month over his due date) oxygen dependent. We had an oxygen concentrator "plumbed in" at home and several canisters were delivered weekly by a local pharmacy. He was slowly weaned off the oxygen by the time he was about 18 months old- he was a tiny dot for years!
Now he's a very happy healthy 19 year old, studying at uni and has just a blue ventolin as a reminder!
He needed extra oxygen every time he fed and would suffer with many nasty chest infections as a tot, but met milestones with just the adjusted +12 week delay.
Please don't feel too worried- there is a wealth of community and District nurses who will put you at ease, and the all online help you need right here.
Before you know it you will be trailing along after your baby reeling out their pipes behind them as they suddenly decide to crawl and walk!
Make sure to invest in a sturdy based pram to put the cylinders in and have spare cylinders at (when life becomes normal again) at grandparents homes etc.
Best wishes to you and your baby, mine towers over me now!!

Hey,

I remember being there, so upset and worried what it would mean having a baby with CLD. But give it a Google (i know, usually Google is not good but in this case it is!) And you'll see how common it is and how little of an issue it is for children once they get past age of 2. Some athletes even had CLD as a baby!

Our biggest issue has been keeping our 3 year old from tripping over the tubing. It is surprising how quickly you adapt to having the tubing around.

You can also get some cute face tape from an online shop called Tubie Cheeks which jazz them up a bit and make it feel less medicalised.

(Just to make it clear, its our 8 month old baby that has the CLD, not our 3 year old)

Hi Newbee, congratulations. My son was born at 26+3 and came home on oxygen due to chronic lung disease. He remained on the oxygen until he was 1. He is now an energetic, healthy 10 year old.

I was devastated when I learnt he would be coming home on oxygen, but you soon adapt. The hospital maybe able to put you in touch with parents locally that took a baby home with oxygen, they can be a wonderful support.

My advice would be, let it sink it and remember it won’t be forever. On the practical side, i second the poster above, if you are yet to buy a buggy, look for one with a decent storage area underneath so you can pop the cylinder underneath and go out walking. Apply for a blue badge, this one was tough for me as I didn’t see my son as disabled, but it was invaluable when driving to hospital appointments etc as you need to open the doors wide to get equipment out. They only have it for as long as they are on the oxygen. You can also claim certain benefits if they come home on oxygen but your community NICU nurses can tell you more.

You will soon be a natural at moving the tubes around, dressing a baby from the bottom up and cleaning puréed carrot off the nasal prongs.

I hope you have an uneventful stay in NICU and you are all home soon.

@Newbee123

I hope your little one is doing well, I want to reassure you that bringing your little one home on oxygen sounds a lot scarier than it is.

My now very energetic and clever 2 1/2 year old was brown 26+3 weeks, he stayed in NICU for 102 days and we was told very early on that he would most likely come home on oxygen as it took him a while to come down to low flow and it would be of benefit to him in the long run.

He was also diagnosed with chronic lung disease, we was told any baby on oxygen for a long period of time is diagnosed with this and again sounds a lot scarier than it is.

My son was on home oxygen until he was 1, he was weaned of early and ended up in hospital with bronchitis so we was happy to keep him on oxygen until we hit the summer and he was less likely to fall ill.

I was even able to have oxygen cylinders delivered to my mums who lives in another city, so when I visited we had everything set, I use to take the travel oxygen out with me everywhere and you just get use to because you know your doing what's best for your baby.

Me and my husband became experts after a few weeks and it just became a routine for us. We had a community nurse come round often to check the levels and to make sure everything was fine and we was able to call them anytime, you will have the support you need.

So please don't worry to much and just remember it's to make your baby stronger.

Wishing your little one all the best. I hope all the success stories are able to give you some hope and relieve you of some stress.

Hiya!

Ours had a rough ride through the nicu with CLD (aka BPD). It’s basically abnormality in the tissue due to inflammation. Just think of their lungs like a young plant with two leaves. If those two leaves become rough, brown, warped, then the plant can’t photosynthesis (aka breathe), but as the plant grows it’ll reach a point where the state of those two leaves are inconsequential, because hundreds or thousands of leaves will grow normally as the plant develops. Same with the lungs. They’re tiny little branches right now, and those branches aren’t quite normal because of the experience - however you now have to nurture, support with oxygen perhaps, and simply WAIT, and normal lungs tissue will gradually grow.

Having oxygen at home sounds scary, but looking back now (ours came off around a year) it was just another little thing after the big things of the nicu. We were home, we played, we did Christmas, we learned to eat etc

That is the best way to describe it @Sillymummies123 ! Going to copy and paste that to my family as they keep asking about it! Thank you

Hello,

I just wanted to comment as my baby is due to come home on oxygen as well, 0.08 (just waiting for her to fully bottle feed then she will be home). We have had the cylinders delivered and now doesn't seem too awful, we are just trying to focus on the big picture that it won't be forever and we are incredibly lucky to have her here alive (as I lost my waters at 18 weeks, we thought we had lost her, but by some miracle she stuck around to 31 weeks).

If you want to know hiw we get on in the first few days, happy to chat Xx

Hi

I know this post is from a while ago but struggling to find examples of someone in a similar position.
My waters went at 21 weeks and little one born at 31 weeks. We have been home on oxygen for 4 months and weaning process a little frustrating as every time nurse team attend our baby is restless with colic or breathing harder when excited and playing. This means never a constant reading as his foot with the probe is always moving. Also a different nurse each visit and panic when he breathes harder which he normally does when playing, crying or just fed. He’s on 0.1 the lowest it can go and when settled 97 to 100 sats.
I was hoping you could tell me how long your weaning process was as at the moment it feels like a cycle we will never get out of.