I have twin boys who will be 2 years old in 2 weeks.
They were born at 36 weeks; Cody was 6lbs 9oz and John was deemed IUGR (from earlier in the pregnancy) and was 4lbs.
His small size and failure to grow were due to his placenta. It was a grade 2 already at 20 weeks. When he was born it was calcified (dead) everywhere except a small portion around the umbilical cord. He was also "dry" and his skin was cracked from the lack of fluid. We got him in the nick of time. We were told they weren't sure how much oxygen he was getting and that we "should keep an eye on him until he goes to school" to make sure his brain is working fine. There was no bleeding in the u/s they did on him.
Thanks to my proactive team of doctors, both boys were breathing on their own. Cody never saw the door to the NICU and John was there only briefly.
John had various "small" problems as he was growing up like immuno deficiency due to prematurity (improved), GI Reflux (treated with antacids until he was 9 months old), he is tall but very skinny and some feeding difficulties and low appetite.
He met some milestones very early like sitting up unassisted (4 months!), crawling (5 1/2 months) and he walked at 13 months (12 months corrected).
And that was about it.
He still remained a "baby" after that. His brother is growing into a "child", talking, doing things, understanding and following commands and John is acting like a 1 year old.
He also walks "funny", has a prancing, unsteady gait and walks on his toes. He also hold his arms by his sides raised and folded. He is also exhibiting "flapping" especially when excited.
He speaks 10 words and most are cut short. "Ju" for juice, "Doo" for Kandoo etc.
He does not follow commands, cannot point to his body parts and is not intimidated when we scold him. He is also fearless and get into trouble all the time.
They are doing a series of tests on him including karyotype testing for Angelman's syndrome (he fits the clinical profile), an EEG and a brain MRI under sedation.
He IS smart he initiates play, is very social etc. I do not think my child is mentally retarded but I am worried.
So far the official diagnosis is "prematurity and IUGR" pending the results of the tests.
What I'd like to know is what are the long term effects of IUGR and prematurity?
There is apparently some sort of "blockage" in his brain that does not allow him to operate like other 2 year olds and he will not "outgrow" it. I do not believe its genetic.
He does need O/T and P/T and speech therapy.
I am just so worried about all these tests.
When I was pregnant I used to think that if my babies made it past 24 weeks they would be fine (we were trying for 3 years to have a child). But now I keep thinking that if being born a mere 4 weeks early and you still get a child that is different and has seen the inside of a hospital more times than you have in 30 years, I can't even being to think what problems he would face if he was born at 25, 28, 32 weeks etc.
Such a delicate, delicate balance! Its mind staggering.
Please share any info you might have and your personal stories. I am looking mostly for what I can expect from now on. I am hopeful that with a little help in the physical department he will walk like other kid and talk and stop being so hypermotoric all the time and will be able to attend maistream school next year (as he is they can't give me the OK to send him to a school he is too active, too defiant to be a part of group activities as I've said he acts like a 1 year old)
Thank you in advance for your replies and for your time!