NICU Follow-up Developmental Assessment paperwork

Hello everyone...
I just received the summary of S&E's NICU follow-up, a copy which was sent to us, EI, and our pedi. I was amazed at how kind and positive it was. As parents we received so much praise throughout the eval. It made me so proud to know our love of S&E is observed by others. I never want to take credit for their development however, because a lot of how they are doing is partly luck of the draw. Certainly having EI in, and everyone who cares for them encouraging tummy time and developmental play helps hone their skills, and certainly the developmental care they received in the NICU accounts for a lot of their progress; however, there are many parents who do a WONDERFUL job with their preemies and they are not necessary on the chart when it comes to milestones. This is not to say these parents could be doing a better job, rather, due to the circumstances of being born so extremely preamture, there are certain things that no one can control. Although I am honored to be praised as a parent, I know that some of how S&E are doing is out of mine, or anyone else's, control.
I don't want to go through all of the findings because it will take too long...feel free to ask anything. But in sum, Serena and Edwin are at their adjusted age developmentally, or ahead, with only Beanie behind in her expressive language. This eval was done at 6 months and 1 day adjusted (not counted by our lovely adjusted age counter on the top of my blog, but rather strictly 6 months and 1 day from their due date...Jan 21.) Serena was scored at 7 months for her cognitive skills, receptive language 7 months, gross motor 9 months. She is at a 5 month level for her expressive language and this is mostly attributed to her vocal cord paralysis.(I was correct in the way I was spelling it before...someone else wrote chord and I was like whoops...but it is cord.) Everything else falls in the 6 month range.
Edwin is at a 6 month level in everything, except expressive language at which he scored at an 8 month level.
Since our eval both S&E have improved even more. As these are our first children, I guess I am still not over the whole learning something new every day stage.
For example, both have taken to banging objects on their tray in their highchairs and smile when I say "bang bang bang." They hadn't done this 2 weeks ago. Serena took a stacking cup in each hand and banged them together for the first time last week. Edwin is scotting forward on his tummy and pushing up on his hands with his chest off of the floor. He is so much stronger even from last week and is practicing his sitting with less support. Serena reaches out with both hands and grabs our faces all the time now, and smiles as she pulls our face close to hers. She is sitting for longer periods of time without assistance. Champ laughs and laughs and has started making an "mmmm" sound. I could go on and on.



With all this talk of development and milestones, I want to address Shannon's (Ashton's mom)new post. If you haven't read it yet, check it out. Ashton is so amazing, and is truly an extremely happy boy. I don't ever want to come across as a parent who is obsessed with her children's development and an obession with them not having a disability. I want parents whose children have been diagnosed with a disability to realize when I post about what S&E are doing, and when I talk about how I hope for the best, they realize I am doing it not because I think having a child with a disability would be such a bad thing, but rather because I am proud of every little accomplishment they make, and I want them to experience the least amount of physical and emotional pain possible with respect to everything in their lives.
We consented to resuscitation and a continuation of care in spite of the constant reminders that no one knew what the future would hold for these extremely premature babies. I talk about their development, and am so excited for them making developmental progress, because it is an exciting time. Watching your child do anything is spectacular to me, no matter how long it takes them, or what exactly they are capable of doing. I see the positive in every little thing my kiddos do, especially when it is related to them being happy and knowing we love them.
For example, Champ has changed soo much over these past couple of months. He used to have a difficult time with self soothing, and would often wake up at night crying. With a pat on the back or his pacifier he usually calmed, but he was a little more high strung than Serena. Lately, he calms himself, is able to be put down in bed and fall asleep on his own (only if already sleepy) and has not woken up crying in several weeks. EI asked why I thought this was. I could be wrong, but I think Champ realizes he is home and that he is okay. I think he was traumatized by the pain and uncertainty in the NICU, and he has finally realized that his needs are met by us (and of course his wonderful nurses.) I think he trusts us and that has calmed him down sooo much. Of course some of it is overall maturity, but I think a lot has to do with him realizing his needs are always met, and there is a sense of predicatblitity about his life now. This is the area in which I am most happy for Edwin. It makes me happy to know he feels safe and secure.
And Serena smiling the biggest smile EVER when she is kissed and snuggled tight is amazing. She will smile EVERY time we kiss her, and LOVES when we blow kisses to her, which causes her to do it back. These are the things I love the most. The little things that mean so much to us as parents.
I think another reason I think sharing developmental milestones is important is because it proves that no one does know how a child will fare post-NICU. There are people who do not chose resuscitation for fear of the future. This is a point Shanon brings up. It hurts her to know people wouldn't chose life because they fear a disability. I hear what she is saying, and I am so happy we made the decisions we made. But I do understand that people want to spare their child of physical and emotional pain as much as a parent is able to do that. Resuscitation came as an easy decision to us, but it may not to others.
As a parent of children whose future was so unclear, I celebrate everything they do. From the farting, to burping, to hairpulling, I try and cherish it all. I hope for the best so that S&E will experience the least amount of pain resulting from their early birth, but I love them no matter how they score on the Bayley's or any other developmental test. We accepted the possibilities early on, and we vowed to love and care for them no matter what. And let me tell you, that is the easiest promise I've ever vowed to keep.

p.s. I did what you guys told me to, I let them play with their food! It went well!

Bang Bang!

Hey I want to do that banging thing...he did it too 5 minutes later...copy cat! :)



Spiiiiiiiin