Jules is finally napping. Heidi has taken Gigi to ballet class and I can finally write about the testing.
I thought it was fair and accurate, but still hard to hear.
They said they weren't surprised given his prolonged hospitalization, his malnourished state of birth, the 29th week birthday, his inability to feed, and his chronic lung disease that he did not do any better than that.
They were hopeful that when we go for his eigth month exam, that he would be eating well. That made me feel encouraged. It is weird to be so excited for him to be able to do what every typical newborn could do at birth, but I would be delighted just to have him able to eat well.
They said that right now his brain is still taking all the food. When he was born, his head was in the .1 percentile. When the UW NICU discharged him to children's hospital, his head had grown to the 20th percentile, and now he is in the 50th to 75th percentile for head.
This is good except his lungs won't get better until he grows in length. And he was not born in any percentile of length and has not grown to be on any growth chart. He is like a giant lollipop with a tiny body and huge head.
His weight has gone from .1 to 10th percentile.
He was able to do some things a baby who was four months old would be able to do, like roll to each side, sit up supported around the waist for ten seconds, smile and talk to the examiner, hold a toy with two hands, etc...
He was not able to hold his head at a ninety degree angle when on his tummy, more like a 45 degree angle. He was not able to reach for a dangling red ring. He held his head in alignment with his body when they tilted him to each side, rather than correcting himself to hold his head perpindicular to the floor.
The tester was our lovely first physical therapist, Jan. Seeing her was so nice for me. It felt like how I would imagine seeing a war buddy. I had gone through such hellish NICU days with her, laying my worst fears on the line. She had held my hand and hugged me through some dark times and here I was, seeing her under such different circumstances.
She was so happy to see how far Jules had come, astounded to hear of lasix helping him the way it did, so pleased that he did not end up with a tracheostomy or intubated, and really thrilled that he was drinking bottles during the day.
I am still unsure how I feel about the assessment. I wish I could say I was happy that he scored only a month behind his adjusted age. But, that would not be true. Of course I wished he would be okay, be reaching the milestones appropriate for his adjusted age, etc... but, I also wish he weren't sick at all, could breathe without extra oxygen support, wouldn't need nine meds twice a day, etc.... So, wishing is pretty useless to me at this point.
I tried to get them to say he would be okay. that I knew a friend whose baby had scored as a newborn on this four month test, but was okay now. In the nicest way they said she wasn't the same. That his prolonged hospitalization, the severity of his lung disease, and his inability to eat made him different. Not to take hope from that case, because Jules was in a different spot.
Bottom line, they don't know. They don't see this test as any predictor of him or his potential. But that they didn't see anything abnormal and they would have us continue as we were, with the physical and occupational therapy we have, etc....
Okay, I have to get ready for shabbat.
Joy
