Ali - posted on 10/01/2011 ( 15 moms have responded )
I have a wonderful 10 month old son. He developed feeding problems at birth that turned out to be congenital heart disease. To cut a long, long story short- he had open heart surgery at 2 weeks old and spent his first 4.5 months in hospital- most of it in ICU. He is now doing well and his heart is showing signs of healing. He still has a feeding tube, and a stoma- (which will be reversed soon- yay!!)
Anyway, my question relates to his development. He has hypotonia (low muscle tone) and is developmentally delayed. When he came home, he was probably worse than a newborn in terms of his gross motor development, he didnt have head control and was really floppy. WE're working wth physio and getting some progress- he can now roll. He is still floppy and can't sit at all yet. Otherwise his development isn't too delayed- he is happy and smiley, laughs and babbles, he's a great little boy! He manages to eat solids and can hold things and transfer thm from hand to hand.
I just have worries about how floppy and delayed his motor development is. I wondered if any of you have experiene of a term baby who ended up spending a long time being very ill at birth, and how this impacted their development. I don't knoe how much of this is just to be expected, and how much will be reversible.
After all he's been through, I am so happy to have him home and doing pretty well, but I'm now starting to think about his future and what might lie in store for him. i appreciate any advice/stories from anyone who has been through similar!