Mom, Elizabeth, shares her son’s inspirational story and how programs like Early Intervention and Keystone STARS made an impact with Thomas.
When I kissed my beautiful 3-year-old little girl goodbye as I left for a completely normal 12-hour shift at the hospital I had no way of knowing that it would be the very last day her and I would spend as the inseparable pair that we were. I didn’t know that I would clock into work night and not leave the hospital for a month. I was 36 weeks pregnant with her little brother. We still had a month her and I. I had planned to stop working a week or so before our scheduled C-Section to do something special with just her.
Fate had other plans.
I hadn’t even made it to the front lobby of the hospital the next morning to leave to go home before my OBGYN was calling me about lab work I had done the day before, I needed to head over to the Women’s hospital, as my kidney and liver functions were elevated. The proteins in the urine I had provided were off the charts. There was concern for pre-eclampsia. Things moved quickly from there.
Thomas Andrew was born via emergency C-Section on May 16, weighing in at 5 pounds 8 ounces. He came out pink and screaming.
Even though he was a month early he looked perfect and should have been fine. At first, he was okay, only requiring oxygen support for a couple of hours. At around two hours old he had his first low blood glucose reading at 21. Normal for a newborn is above 70. Still, I was told this was common in preemies. That his system just needed to get used to being on the outside.
So, they inserted a nasal-gastric tube from his nose to his stomach and started IV’ s. He was fed through the NG tube and started on IV fluids with added glucose to help stabilize his Hypoglycemia (low blood sugar). For the next several days I sat next to his isolette and watched as we yo-yo’d with the hypoglycemia. Nothing seemed to be helping, with every check he would be lower. His tiny frail body was growing tired.
At one week old on Tuesday, May 22, he began to quickly deteriorate. At 3pm I was holding him when he went purple, and his monitors blared. All I could do was yell for help from his nurses. I then stood by as they feverishly worked on resuscitating my tiny boy. I had worked in that same hospital for more than 10 years. Had run hundreds of codes. Had done CPR on countless patients, but I was powerless to do anything to help my precious baby. Sometime later, the Neonatologist pulled me aside and had admitted what I had known they had no idea what was going on with him, that her best advice would be to pray and hard.
We called close family in and clergy to perform an emergency bedside baptism. When our hands were tied here on earth and we had done everything we knew to do I turned him over to someone who could fix him.
A few hours later he declined further– he needed to be placed on a ventilator to breathe for him and medications to keep his blood pressures up. My sweet boy was on full life support. He was critical. The odds of us losing him were higher than the chance of us bringing him home were. We transferred to Children’s Hospital of Pittsburgh on day nine, where over time he showed slow but steady progress.
Once we found a diagnosis for the root cause of his hypoglycemia and began to correct that everything else kind of fell into place. He began to move on his own again, he began to breathe over the ventilator, and we were able to take him off it after 10 days. On Thursday June 16 on his one-month birthday we got to leave Pittsburgh with a perfect reasonably healthy little boy.
Time marched on and before I knew it, I had to start thinking about returning to work. I remember sitting there in the NICU with him brainstorming trying to come up with anyway possible for me supplement our income without having to leave him. I was absolutely terrified at the thought. After all he had been through how could I possibly leave him every day? How could anyone ever know him as well as I did? Would anyone be in tune enough with him to catch if his blood glucose level would drop and react quickly enough? But with that came the realization that I carried the medical insurance for the family. I now had a million-dollar baby. There was no choice I had to go back to work.
After that decision was made the choice of where I would send him was easy. My older daughter had been enrolled at Barb’s Care A Lot for a little over a year at that point and was thriving. I had called and had a heart to heart with owner and director, Barb. I had explained his complications, she knew all that he had faced from us keeping her informed throughout his journey. She told me that she and her staff would gladly accept him. That her staff was knowledgeable and equipped to care for him. His problem list and diagnoses were a mile long. Bigger than he was. They never saw any of that. All they saw was my tiny baby boy with his bright blonde hair and brilliant blue eyes. Barb assured me that we were a team for Thomas. That we were going to work together collaboratively and make sure that his rocky beginning didn’t hold him back.
Thomas worked closely with Early Interventions for Physical Occupational Speech and feeding therapies. He carries a diagnosis of Hypotonia or low muscle tone he also has a hypoxic brain injury. Holding him in his early months was like holding a bag of potatoes or a rag doll. So, we worked on strengthening his muscles from about three months on. A physical therapist would come into the center and would work on getting him roll over, to hold and control his head. It wasn’t only Thomas that learned these skills and exercises, it was also his teachers. They became an integral part in his success. They worked with one on one every day, helping to acquire new skills and strengthening his weakened muscles.
With the love and the encouragement that he received both at child care and home, Thomas has absolutely thrived. Barb and her staff have become some of Thomas’s strongest advocates and allies. They are my eyes ears and voice when I am not with him. They have never hesitated to bring up a concern about him with any of his therapists and I. Thomas’ health and safety has always been at the forefront of everything they do. At Barb’ s Care A lot my child is not a number he is truly a priority.
Today he is a happy and healthy almost 3-year-old that has recently graduated from all therapies and services. He is developmentally on track with his peers. He runs and climbs and plays. He loves music and dances. He is becoming increasingly more verbal by the day. His brilliant blue eyes and crooked little grin light up any room. The deck may have been stacked against him from the very beginning, but we made sure we reshuffled the cards and played a different game. With the help of his team, he has moved may mountains and has achieved great things. Though he maybe little he has the heart of a warrior and his future is bright.
Thanks to the hard work dedication love and support of his childcare center in collaboration with his family support we have made it.