Hi everyone,
Our wee boy (Max) was born at 24 weeks gestation and is now 9 weeks old. He has undergone two surgeries (one for NEC when he was about 8 days old) and one to ligate his PDA after drugs didn't close it), has had a pulmonary haemorrage, several infections and lots of small ups and downs.
Our big issue, and the continuing one, is his breathing. He is still on the ventilator, having had two attempts at extubation which didn't really last too long.
Does anyone else out there have a story of an extreme prem who was on the ventilator a long time? Most others I read about are later-borns (ie 28 weeks +) who seem to have no real trouble getting onto (and off) CPAP.
We hope to try for CPAP again in the next ten days, but still struggle from day to day, hoping he simply stays alive. I have never experienced anything as hard as the last 9 weeks - and we spent 2.5 years on IVF just getting pregnant in the first place (and he was our last-ditch attempt!).
Any thoughts, advice, or similar stories on any of the above issues would be appreciated.
BTW - our NICU (Flinders Medical Centre) is extraordinary - they are a brilliant team and are incredibly supportive. Sad to read of stories of NICUs that are less than satisfactory. Having a knowlegdable team who really work with the three of us as a set is so wonderful.
Hi Kate,
Welcome to BellyBelly and congratulations on the birth of your special miracle boy, Max.
Sorry, I can't answer your question, I think Racs is the only one who had a 27 weeker. My pair took a while to come off the CPAP but were only ventilated for a very short time.
ETA; was mistaken, little Airlie was a 27 weeker too.
Have you tried Austprem? They are a fantastic site for info on premmies.
Anyway, I am wishing you and your gorgeous boy Max strong, healthy vibes and hoping his trial off CPAP is successful. Hopefully Racs will drop in, she and her little man were in the NICU for a long time.
Last edited by tiggy; January 22nd, 2007 at 06:24 PM.
Hello Kate
I've got no advice having not been in your situation but I wish you and your little miracle man Max all the best. I'm glad you are happy with his care and support. I'm sure it makes a world of difference.
Welcome to BB Kate and congrats on the birth of your little man Max.
Our little Willow was born at 30 weeks and spent 7 weeks in hospital (1 week in the NICU and 6 weeks in the SCN) Willow had 4 attempts off CPAP before she finally did it.
All the Mums and Dads that have had a premmie bub/s know how hard it can be watching there little ones struggle, there will be ups and down. I think thats just part of life in the NICU. Take alot of pics, have alot of holds, to let Max know that your there for him (If you can hold him) as that will help you too.
Anyway stay well and wishing you and little Max good luck for his trial off CPAP
Please let us know how he goes if you can.
hi Kate
welcome to BB - praying little Max goes from strength to strength and gets onto Cpap. Max sounds like an incredible lad already to have made it this far.You also sound amazing and calm too, to have experienced a long struggle to concieve your miracle boy,Max.
I can't help either mine were only 4.5 weeks prem and well at that.
I will keep you in my thoughts - Kristy's Gus was a 11week prem too and he had a long haul in NICU too - maybe she will drop in.
firstly congratulations on the birth of your son Max and welcome to BB.
Im sorry Max has had a long journey in NICU that continues, i had my son at 33weeks so cannot offer any advice re: ventilation as Nixon was only ventillated for 4days.
Like Tiff said Austprem is also a great site to visit, there are lots of mums with prems born from 23weeks who are fighting fit years later & can offer lots of advise.
I hope Max turns the corner with his breathing and can get on CPAP soon.
Please keep us updated on his progress 7 take care of yourself.
What was the reason that Max came into the world so early?
Kate welcome to your most precious son, Max. He sounds like a real little fighter & I hope he stays that way.
I can't offer any help re the ventilation thing as my son was born at 32wks & we were lucky in that he never needed any breathing assistance. I do believe however the sight that the other girls have suggested would be a good place to start as off the top of my head I don't think we have had any bubs born as early as your precious little man.
Big hugs & keep us updated on your little one's progress (& remember we are here for you too so if you need to have a vent or a little "moment" we will be here to listen & offer whatever support we can to you)
Welcome to BellyBelly Kate. Congratulations on the birth of Max, he sounds like a real little fighter. My daughter was a 30 weeker, but we were luckily she never needed any assistance breathing. She spent 4 weeks in the NICU/SCN before discharge (but was readmitted for another 2 weeks just to infection)
Austprem is an amazing place, i would recommend joining in there, as there's a few mums who had babies at the same gestation as little Max, and even earlier (i think the earliest bub was Brooke, born 23.2w)
Good luck, and please remember, we're al hear for you, through the good times and bad... Share the milestones reach, and vent during the bad times.
Hi Kate and congratulations on your little Max! My son wasn't prem, but he did spend 12 weeks in NICU for other health reasons when he was born, so I can sympathise with the extreme highs and lows you go through each and every day. I hope he continues to fight and make progress. Big hugs for you as you travel this tough road.
My Miss Airlie was born 27+5 due to PE and HELLPS. No doubt I will see you at the other site but all sites will give you bits and pieces of inspiration. Even though a baby may be born a bit later then your little man they may have the same issues as him. Airlie's journey has taught me that no two stories are the same. Racs too had a 27weeker and we had different stories with similar twists.
If i can help you in anyway just let me know.
hi kate,
I'm just a newbie here as well. We've been out of hospital 5months now and our little Pyper was born at 24+5 days. Pyper was 704grm and went down to 666grm in the few days after birth, she was ventilated for 10wks which is also a long time, then one successful atempt onto CPAP but, it was quite a few goes to get her off CPAP tho after 6 wks she came off. She then started breast feeding 4days later without any problem and has'nt looked back. She is now nearly 8.5kg, she is on home oxegen (100mls) which you will learn the difference down the track. We were lucky to escape ligation for her PDA that never closed after 26 continuious days of indicide, once she went term it just slowly closed on it's own. We also never had dexemethisone (steriods) our Dr choose longer ventilation over the risks of side effects of the steriod ( which are'nt permanant) after those first 3-4 wks after birth. I am more than happy to talk more with you about the long exhausting road you are on. By the way my name is natlie and i have 3 other children aswell, Brae 9 Tahlia & Zane 4 and Will born sleeping 22wks and now miss Pyper
Kate, congrats on the arrival of Max. A close friend of mine had a baby at 24w +1day 14 months ago. He was on the ventilator for a very long time and from memory had a couple of unsuccessful attempts at CPAP before finally making it. He also had multiple surgeries before finally going home about a week after his due date.
I hope it gives you some help to know that he recently celebrated his first birthday and is doing really well.
I wish you all the best on your long journey. My thoughts and prayers are with you.
Thanks so much for your replies. Some news - Max is now on CPAP (since Thursday, 48 hours now) and... so far, so good! Big, big changes for us, and we're just so surprised and very proud of this clever boy.
Still a long way to go, but we hope he can hang on for a decent length of time (and maybe not ever go back!) off the ventilator.
I just finished reading your post in austprem and was about to reply, Thats great news Max has progressed to CPAP, one small step at a time is a big development in a premmie bub, I hope he sticks with cpap for a while and no more ventillating.
way to go little Max!
24-week premmie
Reply With Quote
Bookmarks