Monday, August 16, 2010

Finding out (Part IV)

Abby spent a couple of weeks in the NICU with an NG tube. She didn't eat. She didn't gain weight. She was jaundiced. She couldn't regulate her body temperature. It was infinitely frustrating. They told us in the NICU that she was functioning like that of a 32 weeker... not a 37 weeker. The did an ultrasound of her head and said that things "looked good". That was it... nothing else... just "looked good". We naively believed them.

Once we got her home we settled into our new normal. Things progressed along but we quickly realized that our "normal, healthy" baby might not be just that. She missed every milestone. As we watched Grace start to smile, roll over, hold up her head, etc., Abby was still the same as the day she was born. With my background in psychology I knew that she should be doing more than what she was doing.

Our pediatrician sent us to a specialist for physical therapy and we began weekly PT sessions at the hospital. Her progress was minimal but at least we were doing something now. One day our PT noticed that Abby head size had spiked. She regularly took measurements and noticed that she had gone from the 50th percentile to the 90th in a very short frame of time. This is very scary news. I immediately called the Fetal Diagnosis Team at CHOP and they put me in contact with a wonderful neurosurgeon. She called me personally and asked me a million questions. She told me to calmly pack a small bag of things that she would need and meet her at the hospital. I was both freaked out and completely relieved that this woman would wait (on a Friday afternoon at 3:30) to see her.

I brought Grace to my Moms and headed to the hospital. Dr. Bianco was waiting for me and quickly looked Abby over. She said that if she had a large increase in fluid she could be at risk for damage to her brain and even death. After a thorough evaluation she felt confident that nothing was emergent and scheduled a follow up visit with both her and neurology after we had a CT scan the next week.

We found out from that scan that nothing about Abby's brain "looked fine". She had macrocephaly with mild hydrocephalus. (A shunt was a possibility at this point.) She has posterior corpus callosum hypoplasia/dysplasia. She had ventriculomegalies in the 3rd AND 4th ventricles. She also had strange formation in her cerebellum. We were scared. We had no idea what this meant. What her prognosis was. What had caused all of this. We now had more questions than answers.

We started therapy with Early Intervention at this point and set up an appointment (for six months away) with a neurogeneticist. So again, we waited.


  1. The cooling vest is really interesting - it works with just water, and is just an evaporative cooling vest - so when you're wearing it, the way it keeps you cool is by the water slowly evaporating from you and pulling your heat away. Very interesting. It works well here in CO because it is very dry, I don't know about more humid climates, but you should check it out. Not too expensive, and they have hats and everything too. I got the recommendation from other special needs moms, so it's tried and true. And it really does help, even if it keeps them kind of wet. I don't know how it would work with a mobile child though - so it would be an experiment!

  2. F - I am definitely going to look into it. Thanks for the suggestion!