DS was born at 25+1 weeks weighing 800 grams. During his first 6 weeks of life, he contracted 3 life threatening infections and was ventilated for a lengthy period of time which contributed to his diagnosis of Chronic Lung Disease.
DS is currently 36+5 and has been taken off CPAP on to High Flow (flow of 3-6 and O2 of 25%) due to failed attempts on Low Flow. He currently weighs 2953 grams and is breast feeding well so, the next step is to slowly wean him off high flow onto low in preparation for him to come home.
Just wondering how people dealt with their premmie bubs coming home on oxygen and what was your day to day routine like?
A friend of mine brought home her little guy on oxygen. All I really know though is that you had to watch not to trip over the tube. And they had a small tank that went out and about with them, as opposed to the big tank they had in the car. He was gradually weaned down by the number of hours he was on it, and was off it by 6 months (was born at 27wks)
That's all I have to offer. Good luck with it, and I hope he keeps on growing strong!
hey there and congrats on your bubs!
a few of my friends have had prems born and home on O2. they found places like ausprem a great resource- so it might be worth looking them up!
i have seen one of my friends following her 3 year old around up and down a playcentre with the long tube of O2 follow- quite a sight! She was a 25 weeker. He other son who was a 32 weeker was on O2 for 12 months- but was the bigger of twins.
My twins were born at 30 weeks but did not need to come home on O2.
take care hun and hope that your prem journey doesn not have too many bumps in the road!
I just want to wish you all the very best, and hope your little man will be home soon. It is just so amazing to read your story and to hear that your little bub, has survived such odds. Congratulations hun, and lots and lots of healthy vibes coming your way. hugs
Rosebud so so so happy to see you are home!!!!!!!!!
My Imogen was born at 27+5 and weighed 815grams. She too has chronic lung disease and it's been a massive almost 2 years for her. She came home at nearly 14 weeks of age. She didn't have o2 at home - but plenty of it inhospy! It seemed like it would never end - and so many came and went and we were still there...
However, that feeling of walking in the front door clutching that beautiful baby is one of my sweetest of life time memories... I know it will be one of yours also!
It has been a very long journey and one that I never thought I would have to travel. We are extremly lucky that for a 25 weeker Angus only has CLD. One week before discharge, the neonatologist (sp?) decided that enough was enough and turned off his O2and to everyone's amazement, he was fine and breathing totally on his own.
I often sit with my beautiful baby at my breast in tears...tears of joy and thanks that he actually made it home...both DD1&2 have decided that they want to become nurses when they grow up DD2 only said to me yesterday that she wanted to help babies just like the nurses helped Angus. They too had been moved by how amazing the staff are in the NICU and what special people they are...how do you thank such a special group of people that saved the life of your child?????????
Maxx was born at 25w and also coped several infections infact 8, had collapsed lungs. He just turned one and was in hosp for 153 days. He came home on oxygen at the end of Feb and has been off it now for about 3 months.
You get use to it but don't know how many times I nearly ripped his face off from standing on the damn cord. The routine is the same as having a baby home without oxygen etc you just have to lug the cylinders around when you go out.
If you want any other help or info just ask or pm me.....very happy to help!
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Premmie bub at home on oxygen?
he will be home soon.
to see you are home!!!!!!!!!
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