Jules had his eight month high risk infant follow-up appointment this week. It was somewhat intense.
The good news: The average range of scores for a baby on the test is 85-115.
At four months, jules scored a mild delay with one standard deviation below that when he scored in the low 80s for motor skills and intellectual aptitude.
At 8 months, he had done a little catch up and scored in the 90s as an average 8 month old. He was crawling and cruising around the test-taker's office and having a lot of fun trying to eat every test object she put in front of him.
The concerns from the visit centered around how he has fallen from the 10th to the 5th percentile on the weight growth chart, hasn't appeared on the length growth chart, and is freaking every medical person out by still being dependant on Lasix.
The part that was intense was when our evaluator, who happened to be his NICU physical therapist related how impressed she was with him, especially since he had nearly died.
I was QUITE taken aback and asked her what she meant.
She replied that hadn't I wondered what all the friction was about between our family and the doctors, that our situation was riddled with angst because no one knew what to do and he was dying. I said he wasn't dying, but maybe on the way to a tracheotomy. She said that when a baby is headed for lung and heart failure and they can do nothing more, than as a last resort they do an intubation.... but that is BECAUSE the baby is dying.
I started crying. She started crying. She told me that after working at the UW NICU for decades, most cases like ours did not end well. In fact, Jules did the best she has ever seen on her test for a baby born as growth restricted as he was at 29 weeks and/or who has lung disease.
Our visit ended with a painful discussion regarding the upcoming cold and flu season. She is very worried for us and implored me to keep jules away from all people, out of any type of baby music class, etc... and it ended on a strange note. From her perspective, Jules is fragile and sick with lung disease. From my perspective, he is struggling with a disability that I hope is temporary.
She pointed to the oxygen and the lasix and told me "Jules is sick." I left promising to be extra careful.
Joy
2 comments:
As we have all said (or thought) this past year, Jules (and Gigi) is lucky to have you two as parents. Worth repeating.
Joy, I am so sorry about that visit. Yes, we're all worried about flu season this year (especially with H1N1), but Jules is NOT dying. Yes, he needs special care at the moment, but this is a temporary, albeit trying, time. Love you.
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