Wednesday, November 30, 2011

Pile it higher and deeper - Aiden's post NICU health battle

Though he was allowed to come home with us, we were given some unsettling news that Aiden's platelet levels were extremely low. While platelet levels may sometimes drop in newborns, Aiden was past the phase where they would usually see such a drop, and his levels were much lower than they would have expected. We were released with strict orders to see his pediatrician the next day after we went home.

After a week and repeated blood tests, the concern for Aiden's hematological health increased. His platelets continued to drop, abnormal white blood cells were found, and his pediatrician didn't know what to make of it. I could tell by the seriousness and gravity of her voice, that this was not a good sign. In addition to the plummeting blood levels, Aiden also started showing signs of jaundice. This was not the "typical baby jaundice" but they were concerned there was also a problem with Aiden's liver. Last but not least, his thyroid levels were off and would need to start medication ASAP to regulate his thyroid levels.

I was in complete shock. Once we got over the initial shock during my pregnancy that my son would need to have surgery and a lengthy NICU stay, we held on to the belief that if we could just get through surgery everything would start to get better. Now we weren't sure if he would make it to his first birthday. It seemed as though his body was failing him. Emotionally, Adam and I were both devastated, but found comfort in each other. It was amazing how through all we had been through, we had grown much closer together. There was no one else who could possibly understand what each of us was going through.

Through all this, Aiden seemed the picture of health. He was active, smiled, and to the lay person, just a typical baby.

It took a long 4 weeks until we were able to finally see the pediatric hematologist at OHSU Doernbecher. He came in with a smile and the first thing out of his mouth was, "He has transient myeloproliferative disorder. I'm not worried... neither should you be." We sat there with our mouths hanging open. We had no idea what this disorder was and what it meant for our son. The Dr. spent the next 15 minutes explaining the disorder. Its a rare disorder only affecting babies with down syndrome. Basically, the blood levels do a sort of roller coaster ride with levels fluctuating up and down each week. In 75% of babies with TMD, the condition resolves itself. In 25% of the cases, further treatment (usually chemo) is needed but is high treatable.

We felt as though we could breathe a sigh of relief. For the last month, we had no answers as to what was going on and whether he would ever live to his first birthday. I think both Adam and I had put up a wall around our heart. We loved Aiden so much, but held back a little because we didn't know if this amazing little boy would live. Now we know that the chances were good that he would.

For the first three months of his life, we had a lot of scares and false alarms over whether Aiden would have to undergo treatment. Platelet levels rose, just as white blood cells dropped. Finally, in December, Aiden's levels began to even out and started to get "normal" blood cell counts.

Its hard to really describe what he had gone through from the time we learned of Aiden's prenatal duodenal atresia diagnosis, to the time when we were finally getting through the worst of Aiden's medical problems to a (near) clean bill of health. There were times I felt like I was being punished for something, like this was something we deserved. We had waited 5 years after we got married before we tried for a baby; we wanted to make sure we had all our ducks in a row. We had a booming business, bought a nice house in a great neighborhood , and I had gotten through a lot of medical/dental problems of my own. To feel as though we failed at something that we had waited so long for could possibly be taken away, took a heavy emotional toll on both Adam and myself.

But we made it through, and most importantly, we made it through as a family.

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