Yep. Another one of those people along the way.
Dr. Howard Needelman has become a reoccurring part of our lives over the last four years. We first met him in NICU life at Children's hospital about one week after the kids were born. He is many things by trade, a renaissance doctor of sorts: neonatologist, developmental pediatrician, researcher. He works at Children's in the NICU, at Monroe Meyer at UNMC in developmental pediatrics, and between both hospitals directing the TIPS program, a follow-up research project for preemies that have left the NICU.
The first time I met him was via phone, about 4:30 a.m on July 21st, 2004. Funny, the dates I remember. He had called the house to let us know that Sammy had taken a bad turn in the NICU. He was 8 days old, going on 9. His temperature was dropping and so was his blood pressure--two signs of infection in a neonate. He told us we should probably come to the hospital. When we arrived, he spent a great deal of time with us. He suspected that Sam was developing Necrotizing Entercolitis, a potentially lethal gut infection to which preemies often succomb. He carefully monitored Sam and started a boatload of medications until he was done with call in the morning and the doctor who was on service returned. Dr. Needelman's colleagues planted seeds of doubt in his diagnosis early on; they thought the x-rays were not conclusive for NEC. However, as the hours passed, it became quite obvious that Dr. Needelman's very wise, initial inkling turned out to be true.
In the weeks that followed, Dr. Needelman was more often our doctor than not. He seemed to be there at all of the pivotally bad and good times. He helped us through some of the hardest decisions of our lives and was there to celebrate the good ones in his very quiet and kind way. Kathy, one of the NICU staff, hinted to me that he had a special attachment to Camille, which suited us well as we had a very keen attachment to him.
Our story with Dr. Needelman didn't end when we left the NICU on September 25, 2004. Camille continued to see him in the NICU follow-up clinic until she was two, and we returned to see him last week after a psychologist who was helping us with potty training suggested that Camille exhibited some behaviors that fall on the autism spectrum. Knowing that children with significant visual impairment are notoriously over-diagnosed with autism due to behaviors realted to their lack of vision, we set out to see the man who we knew could provide us with honest, sound advice.
In short, he said, "I couldn't even come close to saying she is on the spectrum," and laid out the reasons why. He is so humble in saying that he knows nothing about visual impairment, when in actuality, he thinks outside the box because he thinks about how it may affect a child more than any doctor we've met.
And what's more important, he believes in Camille, a child who has lived under a microscope since the day she was born. I think one of the things that is hardest about having a child with special circumstances is knowing that your child is continually monitored and analyzed, tested and scored. Though it is all meant for the good, it really can require the family to live in a sphere which most of the world is not living in. The majority of families with babies, toddlers, preschoolers, and children have a fairly private home life; children are raised in an environment that involves little scrutiny aside from the occasional doctor visit and eventually, routine school conferences. Not so with a child who has a special need. From day one, doctors, interventionists, therapists, and specialists all closely monitor the child's progression and how far they fall away from "normal". For a family, it can be very hard to stay afloat in the midst of all of this. In all honesty, it can become difficult to continue seeing your child's gifts instead of their weaknesses, seeing what makes them special instead of what makes them different.
That is precisely why Dr. Needelman is continually a person who feeds the spirit of our family. Though he most certainly states his concerns in a very matter-of-fact way, he has always been able to put the charts aside and see Camille for who she is. He has gone so far as to say that the typical developmental testing means very little in Camille's case as it is visually biased. He does not deny the challenges the visual impairment coupled with the consequences of prematurity can bring, but he also does not deny Camille's potential in the face of all of that.
On the way out, he drove the point home that he thought it was crazy that Camille is not on anti-seizure medication given the magnitude of the seizures surrounding her fever in May. I believe, "Give me a break," were the words he used. However, he understands the caution of weighing side effects, and listened to me as I told him that we cringe at the thought of giving her anything that would affect her personality and cognition, the two big things she has going for her---to which he said to me, "She has a lot more going for her than that."
He removed the microscope. For that small moment, it was gone.
As we were walking out the door, I asked him if he was still working in the NICU. He gave me some song and dance about yes, he was. He was going to quit after his last child graduated from college, but then the stock market plummeted, so he thought he'd stay on for while. Yeah right. And that's exactly what I told him, "Yeah, right. You'd miss it. You love it." To which he said, "You're right."
Thank goodness he was in the NICU for our family, and thank goodness he is there for families yet to come.
And to you, my little girl, who crawled out of your bed tonight to fall asleep to the light of your beloved ladybug nightlight (in your oooh-too-cute pink and brown cupcake nightgown): My wish for you is that someday, you will be out from under the microscope forever. My prayer for you is that in 20 years, if you are reading this, you are living in a world where you can just be you, seen for all of your gifts and talents....as I see you tonight as you sweetly sleep... as your daddy and I see you everyday.
Does she not fit the picture of a school girl or what with the braids, the sweater, the glasses? (The glasses, by the way, are actually a dark pinkish purple--hard to tell from the photo.)
It has been almost 3 1/2 years since Bubba Grizz came into our lives. He arrived into Camille's care on Christmas Eve, 2004, when Camille was a tender 5 1/2 months old. Though Camille and Bubba were nearly exactly the same size at the time, she did have a bit on him in terms of weight, as we all know that muscle weighs more than fluff.
