I have to say having Maxx at home was scarey enough but to have him home on oxygen just scared the bejeezus out of me!!! I don’t think I slept the first night home and even though he was connected up to an apnea monitor it still wasn’t any comfort, not to mention it was over 40 degrees C also. I mean I had nurses and Dr’s looking after my boy for 153 days and now it was just us….what happened if he stopped breathing, what would we do, oh hang on they tought us first aide, oh please if he stops breathing all that first aide stuff has gone out the window and shear hysteria has set in!!
Nathan and I took turns to have cuddles, not to mention nanna it all just felt sereal like someone was going to come and take him back. It was fantastic not to have someone stand there and look over your shoulder watching what your doing, telling you it’s time to do this and that.
I’m not sure if I told you but we are currently living with my parents as we are building a house. That night Maxx and I slept in the loungeroom with the airconditioner going it was just too hot to have him in our bedroom. I slept on the couch and he spent the first night in his bassinet, we actually I lay on the couch and he slept lol. The first time his alarm went off I nearly pee’ed myself, I don’t think I even took a breath until I had my hand on his chest feeling it move. It went off several times during the night so least to say I didn’t get alot of sleep, but he on the other hand slept through the night and this habbit continued to this day….very very spoilt!
He was such a good baby, he never cried, loved a chatter, beautiful, loved his bottles and did I mention beautiful! Once a month we had to go to Monash to see his Respiratory Specialist, where he would be tested on and off his oxygen to see how he coped and to our surprise quiet well. I have to say though everytime his oxygen was turned off my heart would just stop and even though he was fine it was just a mothers feeling that I didn’t want him to stop breathing. At the end of his first visit we were told to take him off oxygen for 30 mins a day…..say what….OMG I will be home alone and the nearest big hospital is ages away……oh quick pass me some of that oxygen. The first couple of days I just stared at him everytime he was off, the world could of stopped but I wouldn’t of known. The next month he had his test again and did better than last time, this time he was to come off 1 hour twice a day….can he do this I mean this was a baby born with no lungs, only been out of hospital for 2 months and you want to take him off for 2 hrs a day!! But then were told in 2 weeks inrease it to 3 hours off if you think he can cope….huh so in other words if he doesn’t turn blue give it a whirl!
Well it turned out that everytime we went he had to be off more and more till it got to the point he only had to be on it at night. Well we had moved to M buy then and the nearest hospital was a long way away and now I had to have him off all day. That kid proved me so wrong, not once did he struggle, not once did he turn blue…..yes he got very tired but he showed all of us what he could do, just like he did in the hospital when he wanted that tube out of his throat. After the 5th month of being home we had to do a overnight test at home with his oxygen turned off…..if my good friend B had of lived close I would of gone and got all her sedatives. We set the machine up so it would record his breathing patterns, attatched the cord to his little foot and crossed every part of us we could. If his oxygen dropped into the 80’s for over 3 secs and it continued to do so then we were to stop the test and turn his oxygen back on. I tell ya if I could of fitted into his cot I would of slept with him, I just wanted to sit there with my hand on his chest but knew I had to let him do it I mean he had all the right machines on him to alarm us if he did stop breathing, but what happens if they don’t work…..ok ok calm down. Again he said enough was enough I want this oxygen off altogether….he blitzed it!!!
I got a call a few days later to say take him off it, he doesn’t need it anymore….I was so excited but crapping myself at the sametime. Thank god his Dr let us keep his oxygen cylinders here for a few months but the day they were picked up we knew we were on our own. The one thing that surprised us about all this was we were told that he would have to be on oxygen unti he was probably 2 yrs old and by 9 months or 5 months corrected he was off it all together. To be able to go out without dragging around an oxygen cylinder or have people stare at him with his tubing across his face was the best because now I had a baby that no one knew was a prem….he looked like a normal bub.