and so we move forward~~~the first few years......

 

   Thomas spent 11 1/2 weeks in the Neonatal ICU---NICU for short.  Touch and go everyday.   Bob and I settled into a routine--I would visit the hospital every morning with my mom and we would visit together @ night when he came home from work.  Some problems Tom did NOT have, thankfully, were: ROP -retinopathy of prematurity which can decrease vision; NEC-necrotizing enterocolitis  which destroys your intestine.  What he did have were an  IVH grade lll--intraventricular hemorrhage-- bleeding into the ventricles of his brain; and PVL-periventricular leukomalcia which were lesions in the white matter of his brain.  These 2 were the cause of his cerebral palsy.  His brain had a period of ischemia--decrease blood supply/oxygen to the brain.    Now, no one knew while we were in the NICU that he would have CP, we only knew that the IVH and PVL might lead to signs and symptoms of CP.  
     
     Then it was finally time to go home! the nurses and Neonatologists had prepared us well for this day, but we were nervous.   Bob and I, and anyone who would be watching Tom in those early months had to be trained in CPR.  My Mother and father volunteered to be trained also.  Tom came home 3/23/93 with an apnea monitor that would blast an alarm if he stopped breathing----while this might panic some parents, we were relieved!  We could actually sleep at night , because the alarm would alert us to any breathing issues.  I would NEVER have slept without the apnea monitor.  In fact, while he was still on the monitor we took him upstate with us to a bed and breakfast we would stay at when we went skiing.  We were good friend with the owners, Peggy and Joe and we just wanted to get away.  The monitor had been on Tom for a few months, and we never had an apnic event so off we went.

     Looking at all the pictures from the first couple of years brings back so many memories........the formula was a special prescription and it cost a small fortune!  Tommy would not stop crying.....oh my..... his neurological deficits made it so difficult for him, poor baby.  I would swaddle him tightly, try to keep the binky in his mouth so he could suck, and give him mylicon drops.  We figured out that if you held him in a "C" shape--support his neck and curve him into a "C", this would help.  Bob and I sat on the stoop in the early spring one day and just cried because we did not know what else to do.   I thought  "my god, if we are  two middle class educated adults, with a supportive family, and we are this frazzled and stressed, how in the world do single moms with little income and support handle this?"  For the first time I could understand why parents throw their babies out a window or smother them!

   Things got better.   Tommy slept more and was more comfortable. He grew like a weed.  He was always smiling!  I had never seen such a happy baby. Every picture we have of him , he has a huge smile.  We were hooked into an early intervention program and a parade of wonderful therapists came to the house to work with him.  Pt and OT was slow progress, but speech therapy--oh what a joy!  When physical goals are so slow, and not always achievable, speech therapy goals came early.  so happy to see progress in sounds and speech.  I still remember that first speech therapist--Joan K.  we stayed in touch for many years.   Family, friends, and neighbors were wonderful---we were so grateful for all their help and support.

    I guess it was somewhere around June that I knew something was not right.  Tom's hands were fisted a lot, his legs were stiffer than  other babies.  When the doctors finally said yes he has cerebral palsy we were ready for it.  Funny, I did not do a lot of research in the first few years--I think I really did not want to know too much.  I wanted to see how Tommy progressed.  I remember the therapists'  giving me looks that showed they did not think there was too much going on mentally with Tom, but I knew they were wrong.  I will always remember going to see the Neonatologist for a check up and CT scan, and he said to us "it doesn't matter what the test show, it matters what your baby is doing".

    I will leave you with a funny story......
Really, we had been through so much, we learned not to sweat the small stuff, or get crazy with germ control.   I believe some germs are good for you, and you need exposure to build your immune system
      Tommy had weak muscles and poor control, and he could not hold onto his binky (pacifier) in his mouth very well.  As anyone who had had a baby know, they need to suck--it comforts them.  Tom would lose that pacifier every few minutes and cry.  It was a special one, that did not have a strap or a clip.   It would bounce here, there and everywhere.   We had a black Labrador named Digger that I had trained to get the pacifier and bring it to me.  Well, one day my girlfriend Barbara was over with her baby who was approx the same age as Tom.  She came prepared----she had a huge diaper bag with at least 6 sterilized binky's in there. Every time her baby would drop the pacifier---boom! she would whip out another sterilized pacifier and pop it in his mouth.  So of course Tom drops his, it flies off somewhere, and I call the dog and say "Digger, bring me Tom's binky".  Digger grabs it, brings it to me and *phoot* spits it in my hand. I wipe it off on my pants and pop it in Tom's mouth. WELL, poor Barbara was HORrified!!!   I will tell you---my kids including Tom were hardly ever sick--no strep, no GI viruses, hardly a cold to this day.

Well , thank you for listening......see you next week and stay well    cathy