I took the twins to the NICU follow-up clinic last week. They really didn't tell me anything that I didn't already know. Camdyn is behind, and Cade is really behind. I already knew it, but it didn't soften the blow any when you see it on paper. Actually, Camdyn is right on track in almost all areas for her adjusted age. Cade is pretty much behind in all areas. I wasn't surprised to discover that their lowest scores were in the social-personal area. They lived in a plastic box (isolette) for 2 months of their lives, then in an open crib in the NICU for 2 more months of their lives, and then when they were finally released, we were told to keep them in strict isolation throughout the whole winter. Considering they have only been in social situations for the last few months, it's not surprising they would score low in this area. It's so disheartening to know that we go to therapy all the time to try to "catch up", and it just seems unattainable sometimes. My heart hurts to see how hard they have to work to meet each milestone (sitting up, crawling, pulling to stand, cruising, etc.) when full-term kids just do these things. The clinic told us that they could tell they have both been in therapy and that without the therapy, they would most likely be even further behind. Now we are supposed to add occupational therapy to their busy little schedules.
I feel inadequate often. No matter how much I do with them, it never seems like enough. Just listen to all of the instructions we are given by the therapists. We have to worry about gross motor skills, fine motor skills, feeding issues, sensory issues, social skills, and speech/language development. Thinking of that responsibility alone exhausts me not to mention all of these tasks we are supposed to work on daily.
- encourage plenty of standing time
- encourage cruising along furniture
- make sure they are pulling up equally on the right as they are on the left
- encourage pulling to stand
- make sure they bend down to pick up objects on both sides
- encourage picking up objects by squatting instead of plopping down
- encourage controlled sitting
- encourage putting objects into containers
- encourage using the thumb and forefinger to grasp objects
- encourage holding a sippy cup (which they don't do at all!)
- provide different surface textures to move on
- encourage taking bites and helping them to manage those on their own (in other words hope they don't choke)
- offer table foods (again - and hope Cade doesn't choke when he attempts to swallow food whole without chewing and watch Camdyn try to chew food with no teeth - yes, she still has no teeth at 14 months old!)
- make sure to add butter and oil to every meal to gain weight
- make sure to fit in 4 bottles daily still along with 3 meals to get in the extra calories
- encourage babbling sounds
- play plenty of nursery games (when exactly?)
- read to them often (again, when?)
- say the names of objects around you
- offer playtime opportunities with other children (but hope they aren't sick!)
- and on and on and on - The list seems to grow longer every week.
Overall, I am really thankful that we have great therapists. I don't even mind going to therapy. I always think of it as, "At least, this is in my control. I can do something about it." I felt so helpess in the NICU so often. All I could do was read to them with a plastic barrier (isolette) between us, sing/talk to them, and play music for them. Everything else was out of my control. Now that I do have some control over their outcomes, I feel this huge responsibility resting on my shoulders. It's a horrible feeling because I can't help but think that if I fail, they fail; if I succeed, they succeed, but I suppose that's just parenting in general. But, how can anyone do all of the above mentioned tasks daily? It's just not possible, so I'll continue to do my best and hope for the best.
I read an article (http://www.kcentv.com/story/14647385/preemie-birth-survivor-goes-on-to-graduate-from-baylor) about a girl who recently graduated from Baylor with top honors. She was born 10 inches long and only weighed 14 ounces. Her father said this about her:
"Once you start working so hard to catch up, there's nothing in your brain that tells you you're caught up to stop working," her father Barry Ray said.
That's the road we are on!