Once Tommy was home and we had gotten into a routine, we started services for Early Intervention. Once you're in the system, it's fantastic, but actually applying for services was a chore. There's referrals, then an intake interview, then finally a team meeting where goals are stated and written out. It took about 6 weeks just to get therapy started.
We started out with an Early Interventionist that came out to the house to assess Tommy's needs and to see where he was developmentally. Because he was aversive to just about everything, plus a preemie and a very sick baby who had been in a hospital bed for a long time, our work was really cut out for us. We started with simple things. First up was joint compression and brushing. We would firmly rub a plastic surgical scrub brush over each of his limbs, then his back. Afterwards, we would compress and release all of his joints. Fingers, then wrists, elbows, shoulders. Hips, knees, ankles, toes. We started once or twice a day, then moved on according to what he would tolerate. We knew pretty quickly when he'd had enough. His hands would fly to his face and cover his eyes and he tried to look away.
Once Tommy started becoming comfortable with touch, we moved on to stimulation. Up until that point, at around 4 months old, Tommy hated to see any bright colors or movement. Our house had to remain as quiet as the hospital ward had been. Once we had conquered sights, we moved on to sounds and touch. Around this time, we also started physical therapy. Occupation therapy concentrated on his senses and small motor skills. Physical therapy would work on his muscles. At 4 months old, he would not tolerate any time on his tummy, roll, pull himself or sit. Simple things like reaching for a toy were major accomplishments for Tommy.
Through hard work, determination and encouragement, when Tommy was 5 months old, I was rewarded with his first smile. He learned to roll from side to side, but still hated anything on his tummy. He liked to touch only certain things. New things were met with hesitation. We all learned Tommy's cues. He would start by scratching the back of his head. That meant "I'm not so sure about this". Sometimes you could see the look in his eye that he'd had enough. As soon as the back of his hands went to his eyes, time was up.
Each muscle in his body had to be trained. He was too sick and weak to be a typical baby. There was no sitting at 6 months, no crawling, and certainly no standing. But the kid had an arm like you wouldn't believe! He could throw! At the end of his life, he would purposely throw things under the couch so he would not have to do therapy, then smile when he got the toy he wanted.
Everything was a therapy session. Tommy being held in a sling for 10 minutes was a goal. Holding a toy and passing it from hand to hand was a goal. Eye contact, touching new things, and finally, the day I had dreamed of since he was born.
Easter Sunday, Tommy was about 7 months old. I picked him up and cuddled him as I sat on the couch. He let me hold him. It was the first time since coming home that he had not arched and turned blue when I held him. I rocked him, he cuddled back with me. He loved me. He trusted me. He had finally bonded with me as his mommy. As we lay there snuggling, I wiped away my tears. Tommy had other ideas. He tucked his tiny head against my chest and fell asleep in my arms for the first time in his life. After that, there was no going back. I cuddled him every chance I got.
When Tommy was around 8 months old, we knew it was getting close to doing another heart surgery. His sats were slowly dropping into the 70's. It was summer and I wanted to take him to Kentucky to meet family for the first time. Up until then, only my mother in law had the means to travel to see us. It was a delicate arrangement. We had to plan for his medical devices to be shipped, plan for the extra supplies we would need and clear it with his team of doctors. He was not on oxygen at the time, but we still had to take a tank, just in case. Our van was packed to the gills.
It was a wonderful trip. We had two family reunions, one from each side. I will always be grateful we were able to make that trip happen. It would be the only time our families would see him. When we came back, we knew it was time for his first heart cath and hopefully, the second stage of Tommy's surgery, called the Glenn. Therapy was paying off. The night before the procedure, Tommy was finally able to lift his legs off the ground and put his feet in his mouth. He was 9 months old, 7 months corrected age (the age he actually was if he had been born full term).
The morning of the heart cath came. We took him to the day surgery room and they started the typical things for a procedure. Temperature, blood pressure, pulse ox. Tommy's oxygen saturation levels were very low. Mid 60's, and he was very blue. I was told pending the outcome of the cath, to be prepared for heart surgery very, very soon. Within two weeks, if not sooner. It was time.
Tommy was taken back for his procedure and fortunately a room was open on the step down unit right away. I was able to wait in his room and watch tv while I waited. The nurses kept me updated. Our first bit of trouble was when I learned that Tommy heart was a bit more tricky than anticipated. He needed to be sedated. Another update, Tommy needed paralytics so that the doctor could move around his heart and not damage it. Depending how long it took to come out from under the medications would determine if he went to recovery then to his room or straight to the PCICU. I was told the doctor that did the heart cath would come to speak to me.
Dr. Bandisode walked into the room. She got straight to the point. Tommy would not be having the Glenn procedure. She started saying things like chronic lung disease, lung pressures, wait and see. I felt so cold and started shaking. If I had been told that morning that Tommy needed this surgery within two weeks, and now I was being told he couldn't have it, what was going to happen? She suggested we take him home and wait a couple of months. And what? Wake up one day to find him gone?
Rob picked me up and I told him everything. Our son had just been given a death sentence. We cried as we drove down the road, holding hands, preparing for the worst.