To all the premmie mums please help

[bAaM]

I have a few questions

Im posting this for a friend of mine with premmie twin, some of u no there story but i will give a quick run down.

Lilly was born at 24weeks(518grams) Jace born @25weeks(850grams) Jace is on cpap and nearly ready for special care he now ways 2100grams he is 6weeks old but lilly is haveing a few probs

She is ventalated with 21% air in her crib and 22% in her tube the have tryed the cpap on her once but she got to tied and they had to ventalate her again she has had 2 steroid shots for her lungs and they said they can only do one more round she had to have a few blood transfutions, she has a small bleed on the brain (there not to worried about it ATM cause its getting better) and may need laser eye surgery,

Lilly is now 7 weeks old and weighing 1800grams she looks healthy she smiles and she looks around, the doctors have come and said that because she has been ventalated for so long she doesn't have a very good chance of surviving.

What i would like to no is has this happened to anyone else and what was the outcome.
I think she is doing great for a baby that isn't ment to be here yet. she is a happy little girl and looks great. My poor friend has been so positave and i'm so proud of her but i think after what the doctors have told her has put a huge downer on her. She is now beside herself cause she really thought lilly was doing great.

She would also like to no if there is anything that she could do to help like massage any natropath(sp) ect.... just anything to try and help.
We are prying like no tomorrow but need some advice.
Thanks in advance

[Shajbm]

Hi there,

Congratulations to your friend for the birth of her twins.

Mine were 32 weekers. 1 needing cpap and in nicu for 6 days, then SCN for the rest and the other straight to SCN. Both were in hospital for 5 weeks.

Great news about both their weights.

The problems with premmies is that so much can go wrong. Which hospital are the babies in? Has your friend got a neonatolagist? Why are they saying that due to her being ventilated, that she doesn't have a good chance of survival? I know of a 25 weeker who was ventilated for ages and had other problems and issues and is now a thriving baby.

You/her could check out www.lifeslittletreasures.org.au. It's made up of mums who have experienced the premmie rollercoaster ride and perhaps someone there could be a bit more supportive and be able to steer in the right direction about what to ask etc.

I will say a special prayer for Lily and hope that she will be okay.

You're being a great friend and I hope that your friend realises this.

My thoughts are with you all.

[meagss]

Hi

I have experience in the NICU / ICN - my first son was born at 28 weeks and weighed 705g.

I don't think it is right that your friend should be told Lilly's chance of survival is low just because of being on a ventilator for so long. Some bubs are on it for months and months and now doing great.

Lots of times though, with babies as small and as young as Lilly, things do go wrong. Having a bub in NICU can often be one step forward and two steps back and doctors are notorious at giving the parents 'worst case scenario'. That's something I learnt very early on!

For Lilly to have put on so much weight sounds like she is doing great and I truly admire your friend for her positive attitude. It is extremely hard having your baby in intensive care, my thoughts are with their family.

[erinjacob]

can they do that have twins born at different times wouldn't the bub go through alot of stress then the body stops then goes again a week later or they opened her up then closed an opened again. i didnt no they did that.

[peta1410]

can they do that have twins born at different times wouldn't the bub go through alot of stress then the body stops then goes again a week later or they opened her up then closed an opened again. i didnt no they did that.

That's what I was wondering...didn't want to be the first one to say it incase it was something I really should've know! LOL :confused:

Hope all is going well with the twins.

[immy]

To give your friend some more positive stories. My little girl was born 26 weeks 550grams and dropped to 475grams after birth, only 30cm long. She had an operation on the duct at 3 days old. She was ventilated for for approx 10 weeks then they gave her steriods to try and help her get off the ventilator and onto cpap. Then it was a struggle getting her off CPAP many attempts but finally she was on low flow oxygen and home on oxygen. She had many infections and many blood transfusions. She spent 4 months in NICU. Now she is 21 months old. Tell your friend to stay positive... Girls also do better than boys so I was told...........

[Shajbm]

To give your friend some more positive stories. My little girl was born 26 weeks 550grams and dropped to 475grams after birth, only 30cm long. She had an operation on the duct at 3 days old. She was ventilated for for approx 10 weeks then they gave her steriods to try and help her get off the ventilator and onto cpap. Then it was a struggle getting her off CPAP many attempts but finally she was on low flow oxygen and home on oxygen. She had many infections and many blood transfusions. She spent 4 months in NICU. Now she is 21 months old. Tell your friend to stay positive... Girls also do better than boys so I was told...........

That's true, they do say that girls do better than boys. I have ID twin boys born at 32 weeks and I was told the same thing. Something about the girl being stronger.

Also twins tend to be fighters anyway due to them fighting for survival in the womb from conception