How am I doing?

Hi everyone,


Just a quick update from me, Noah, to tell you how I am doing.
I'll tell you a bit about my average day.

I get fed every three hours with milk, for a total of 8 meals a day. Most of my milk goes through a tube straight into my tummy, but three times a day I get my milk in a bottle. I don't finish the bottle yet, but I am getting better at it.
First thing in the morning is a good wash, and a new outfit. Around 10 in the morning the doctors come by to see how I am doing, and do their thing. I am not very fond of that, but it is not that bad. Sometimes they need a drop of blood, or a x-ray or echo scan, but mostly they just do a check of how I look. I get visits from a professor in genetics, the throat specialist, the childcare specialist, the belly specialist, a plastic surgeon, the doctor in charge of the intensive care, his assistants, and sometimes some students as well. I must have forgotten a few more or slept through their visits, but I'll try to remember for the next time. Luckily they don't come all at the same time!
After their visit I often get physiotherapy for my lungs and chest. This releases a lot of slime from my lungs, and helps me breathe easier. During the day I sometimes need slime suctioning out my tube, because it is very difficult to cough through the tube. After my physio I get an hour of breathing on my own, with the machine on stand-by. This is very exhausting, so I usually have a nap afterwards.
Later in the morning a special nurse comes by to sit me on her lap, and play with me for a little bit. She is a pediatric specialist and will help me develop, although I think she just enjoys it. She said I was completely normal, and I am happy to get an extra cuddle.
In the afternoon my Mum and/or Dad come by for a long visit. I always try to be awake for that, but with all my other activities sometimes I will fall back asleep. They will also give me a bottle of milk, when they are there during feeding time (hospital is a bit like a zoo, they even have a giraffe here, although I suspect it is a painted X-ray machine).
Anyway I get to sit on their lap, which is very nice and they read me a few stories, and talk to me in general. After their visit I always need another nap.
In the evening it is time for another hour of breathing on my own, without the machine. They try to make me exercise my lungs three times a day. Then a good solid nap, only to be woken up for more milk, and nappy changes. If I am awake at some point during the night, they will give me another bottle, and my last lung excercise, other wise I get that early in the morning.

A little bit about my surroundings, and machines. I have a normal childrens bed now, and have my own stuff around me. I have a few toys in my bed, and my own blanket to make it all look a bit more colorfull. They have taken all the needles out of me, and I now have only my breathing machine and some sensors, to measure my breathing frequency, my heartrate and the oxygen level in my blood.

So that is my busy schedule, I hope you understand that I can't always be awake if you come and visit. I am off for another nap,

Noah.