24 weeks 6 day

[phenomenaldom]

My sweet Daniela was born april 10th at 24 weeks 6days weighing 1lb 7oz. these have by far been the hardest days of my life. the feeling of not knowing what to expect next is almost unbearable some days we have good days and bad but in my eyes everyday is better then the day b4!! she is growing fast (now 3lbs 11oz) and for the most part is doing pretty good! Obviously she has had many obstacles since her birth and her biggest obstacle right now is getting off the ventilator.... She has been on her whole life (66 days) all but an hour and a half on the fourth of june.... im just curious as to other peoples experience and the length of time and compications other preemie mommies have had in the nicu... the doctors say she should be off the vent by now and if in a month from now she is still on that we will b talking about possibly placing a trach tube and her possibly coming home on a vent... any other mommies in/or have been in this situation out there??? i just wish i had somebody to talk to that can relate...

 

[cat81]

I can't really offer any advice I'm afraid as mine was a much later premmie. However, I just wanted to say congratulations on you little girl, she sounds like a real fighter. I hope that you find some answers and you can get her home soon. xx

 

[25weeker]

Hi

Congratulations on your wee fighter.

I don't have any experience with long term vents or trach as my little girl had quite good lungs for a 25weeker which was amazing as her sisters were underdeveloped and as a result didn't survive.

There is a UK charity bliss that have a messageboard. I know you are not UK based but I know of 2 mums on there who's lo came home with a trach. One of them is off it now and the other is still on it so you could maybe try there for some advice.

Good luck xx

 

[jandksmommy]

I can relate and will be here for you to talk to any time

My daughter was just over 23 weeks at birth, weighed 1 lb 6 oz. She was in the NICU for 4 very long months. She is 8 months old now (4 months adjusted) and is my little rockstar.

I would have to look back at my journal to say exactly but I think she came of the vent at a little over 6 weeks and went on biphasic cpap then eventually nasal cannula. It did take her 3 tries to come off the vent though. The first time, she turned blue within 60 seconds... I was completely freaking! The second time, she lasted about an hour and a half but then they decided she was working way too hard so reintubated. She is still on constant low flow oxygen but we are hoping she can come off it before her first birthday. I do remember reading on the NICU Wall Of Fame about a few little ones who were on the vent for more then 70 days. I was always a bit jealous of the ones that never needed the vent Keep your spirits up, your little one will get there!

Our sweet little miracles are amazingly strong! Thinking back to the night Reese was born, I couldn't imagine how such a tiny under-developed baby could ever possibly survive outside the womb but here she is!! Everyday she amazed me... through all the troubles, she just kept going. Now she spends her days smiling at everyone and trying to pull her nasal cannula down to her mouth so she can suck on it

 

[Pink_Sparkle]

Hi there, My 23 weeker was born on April 22nd and he was on the ventilator for 6 weeks then they tried him on Cpap and he lasted 2 weeks. On sunday last week he had a bad turn, he was getting very tired and his belly was very swollen from constipation and excess gas - it was pushing up on his lungs. They had to put him back on the ventilator for a rest. On friday they were unsure werther to try him on cpap again or leave him longer then he decided to take the decision out of their hands and pull his breathing tube out! So hes back on cpap and doing well.
Ive learned that every baby is different and they all do it in their OWN time. I was quite obsessed with the other 23 weeker in our unit (shes a week younger than my son), she came off the vent after 3 go's then she wasnt on cpap long before she moved on to high flow oxygen....mean while my boy was back on the vent. I was driving myself nuts. I literally had to keep kicking myself to remind me that every baby is different.

Have they tried her on steroids? My boy is on his 2nd course, the first course helped him off the vent xxx