Newbie looking for help :)

[takingforever]

I had my little boy at 27+4 on the 9th sept hes now 23 days old and showing signs of chronic lung disease they wont diagnose it till hes 28 days but they are certain he has got it. I just wondered if anyone on here had any info on the steroids they offer or has a lil one who was diagnosed the same, (he finishes his antibiotics on tues and recon he will need steroids) but they wont say much about the effects of steroids untill that time.

A little bit of why i delivered early my waters broke at 22 weeks spent the next 5 weeks with no fluid what so ever went for a check up on thurs 9th they were taking a swab to check for infection when i started bleeding badly so they induced me. Had my lil man at 10.35pm weighing 2lb 10oz x

 

[25weeker]

Congratulations on the birth of your little boy. CLD is diagnosed if a baby is ventilated for more than 28 days or requires oxygen after 36 week gestation.

My little girl was born in jan at 25+2 weighing 1lb 7oz and has CLD because she was on oxygen until 38 weeks. She is slow at gaining weight which could be due to her CLD but apart from that she isn't showing any obvious signs of having it. I cannot give any advice on steroids as my lo didn't need them but there will be some mums on here who can help.

This forum is great for answering any questions you may have.

Keep us posted on your lo progress.

Take care xx

 

[takingforever]

Thank you for your reply

Just had a phone call from the hospital saying that they have put him back on the breathing machine(was on c-pap) as his oxygen had gone up to 60-70% and they couldnt get it down they are changing his antibiotics to one with a broader spectrum and that his lung on the right side has collapsed i swear i can feel my hair turning grey from all this stress xxx

 

[25weeker]

It is very common for very prem babies to go back on ventilators. My lo came off after 4 days but went back on again at 4 weeks with sepsis.

The journey in neonatal is a complete rollercoaster with many steps forward and back and some days feeling like you are only going back. I think I have aged 20 years this year lol!

Hopefully the new antibiotics will take effect quick and your lo goes back on cpap soon.

Xx

 

[AP]

Hey hun! I have a 27+4 lil girl who is now 15 months old (when did that happen?)

She was said to have CLD but we have never ever had any issues, like 25 weeker said its just a term for babies being on oxygen for a certain period of time.

We have never had any issues with 'CLD'. Ever. Its never been brought up since we left hospital. She had a lil cough when we went home that went away with time and now shes fine!!!

You are welcome to PM me or facebook add me (and prob the rest of us ) if you want to ask anything!

Alexs own diary is at www.babygagasdiary.blogspot.com, it starts from when she was born and goes through her neonatal journey and more

 

[shreedhara12]

Congratulations!
My daughter was born on 25+2 and was on ventilator for more than 15 days in total and almost 2 months on CPAP. Earlier we were told that she could suffer from CLDs and being born premature my wife was given steriod shots which would speed up out LOs lung development.

Now she is 4 months 17 days (1 month 5 days corrected) and today was her follow up; was very happy to learn that she is going great.

Since my LO was on ventilator and CPAP for long, doctors have advised us to get her RSV vaccination during cold months.

 

[takingforever]

Thank you for your replys as soon as i walked in to nicu this morning and seen my lil man i just burst into tears it was like going back to day one but his oxygen levels have come back down to 30ish% hes back on the morphine so was asleep the whole time we were there they have put him back on hourly feeds as i personaly feel he was rushed to 3 hourlys the nurse looking after him the other day missed his feed as he was having psysio so she just doubled up and SHE decided that he was ready for 2 hourly feeds without asking the dr looking after him then she had him the next day and decided to start him on 3 hourly feeds and upping him 5ml yet again without asking and after every feed his breaths became really shallow but she reconed that wasnt a problem but after talking with the consultant today she had no right doing that as his belly was too full and that compressed his lil lungs so he wasnt taking deep enough breaths and made his problem worse (just wait till i see her grrrr)
Well they have sent some more secretions to the lab today and if they come back clear with no infection they are going to start him on the steroids tues or weds and see how he is friday and if his oxygen levels come down even more they will consider putting him back on cpap.
I wanted my baby home for xmas but its looking unlikely and also sorry if im ranting or going on but there is no one else who understands me and i want to thank you all from the bottom of my heart xxx

 

[embojet]

Sorry to hear he is having a tough time at the moment . Molly was diagnosed with chronic lung disease, and came home on oxygen. She was on oxygen until she was 3 months old, but it absolutely fine now, and has no lasting symptoms.

 

[bob2331]

Harry has CLD, he was a 24weeker, was vented for 6 hours then on vapatherm, back on vent at a week old when he got a chest infection then vapatherm then nasal canula oxygen. He came home on oxygen and has now been off it for a week. He didnt have the steriods but to be honest, i was so worried when they told me he had CLD but it seems like they diagonose most premmies with it, am sure yout little one with be home befopre you know it xxx

 

[cat81]

Sorry to hear you're having such a touch time. Sending lots of hugs and fingers crossed you will soon have some good news and get your little one home with you. xxx

 

[Agiboma]

I had my son at 25-2 and he was diagnosed with CLd apparently they diagnose every baby that needs ventilation over a week or requires o2 after 36 weeks indent know aboutthe steroids as my LO never got them but just knw that he NICU is very difficult and in pulled out my first grey hair yesterday but all the members on here have gone through this and we totally understand your feelings and a big congrats on your Little fighter

 

[takingforever]

Just a little update - sorry ive not been on for so long

Well L'Angley had the steroids and came back off the ventalator and onto CPAP within the first few days of having them i was a very happy bunny He finished his steroids on weds evening by thursday his oxygen had creeped back up to 37% he was on about 23%-27% while on the steroids and yesterday it was up even more to 45%-47% so i spoke to the dr she said she would leave him be a couple of days and see if he can correct it himself or he might need more steroids But just rang this morning to see if he has had a good night like i do every morning to be told hes been changed to bi-phasic mode of ventalation and had a chest xray last night due to been unsettled and needing more oxygen and my poor lil soldier has a chest infection and they have started antibiotics why oh why cant anything be plain sailing i hate seeing my boy in pain

 

[takingforever]

Well not long got back from the hospital and spoke to the dr yet again and it seems L'Angley doesnt have a chest infection as his blood coultures have come back in the normal range :S but they also sent some rubbish off his chest off aswell and that hasnt started growing anything as of yet and the dr seems to think it wont do either, so if thats clear tomorrow they will stop his antibiotics and are concidering giving him some more steroids but are unsure of what dose to use and how often...
But in my opinion i think my lil boy has a cold cause he keeps sneezing and filling his mask up with snot

 

[25weeker]

hope your lo gets better and of the ventilator soon xx