Today was a busy one for Mitch and Cam. They were back at kinder this morning, and then after a quick lunch we headed off to Monash hospital for a follow-up appointment with a dietitian for Mitch.
We have a delimma on our hands at the moment. Mitchell really needs to learn how to eat enough food ( and thus stretch his little stomach), however he is not growing enough. I am happy with his progress - after all it is really hard to assume all will be well within a short timeframe when it has already been a challenge for him for 5 years. The specialists just aren't happy with the calorie intake that he has at the moment, and are really wondering about the use of his gastric PEG. Do we or dont we take it out?? Can he sustain himself to the point where he can grow at the rate he needs too, or do we leave the PEG in in case we need to top him up with extra formula again.
Whilst at the dietitian today, we realised that all the weight Mitch managed to gain from Feb to December last year, he has lost. He is now 14.9kg . This time last year he was 15.2 Taking away that supplimental feed has caused him to lose about 1.5 kg since early NOv. That's a huge amount for a little guy.
So Mitchell has been given ANOTHER food additive in order to aid with some weight gain. ( I have told him that I would happily share my extra kilos with him - but he is not interested :( LOL ) So now we add one additive to anything milky, and another to everything else. It will be sprinkled onto , mixed into food and dissolved into drinks all over the place. The other "extra" for him will be loads of butter and olive oil. Eat as much chocolate and chips as he wants - as long as he is getting a balanced nutritional diet during the day. Foods with fat are a yes, salads are a yes - but only with an oil based dressing. Sounds like the dream diet for me.
On the flip side to all of this, it was a surreal experience today - walking through the maze of the hospital's corridoors. I practically lived there for 6 months 5 years agao, and now it feels odd to see the changes the hospital has undertaken.
We popped up to the neonatal department, and met up with a number of staff who were involved in the twins' care . Cameron has been asking alot of questions recently about the scars on his body. Today he met one of the doctors who was in charge of their care for their first 12 weeks of life. It was under his direction that the decision was made that both children needed their heart surgery or they would die. All other plans had failed.
It gave me goosbumps to hear Cameron now talking to this doctor about his scar, and asking " did you make my heart all better?" No this Dr wasn't the surgeon, but his co-ordinated care was what saved my children.. ( I am so glad that I wrote a journal back then, with the intention of letting the boys read it all when they were older. This will hopefully explain why we made some of the most difficult choices Peter and I have EVER had to make.)
Today I was so proud to see this doctor again - talking and meeting my children. Two little people he had saved from death. I know it is their job, but it is a life changing one - one which we will be forever grateful for. Again I said thank you, to Tony - but it just doesnt ever seem enough .
Met up with lots of the nurses - who were suprised to see big 5 year olds in their midsts. Where did all that time go.
Mitchell became very quiet for most of this attention - saving up all his chatter for the drive home. For once I was really pleased to have all the chatter coming from the backseat. A trip to the hospital always puts my life back into perspective.
Hope you had a good day today. And promise me that if you have kids - you will give them all the biggest, biggest, squishiest hugs you've given them for a long time.
And Why?
Just cause you can!!
L
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