If you think I skipped NICU Day 3, I didn’t. Not much happened yesterday so I didn’t feel there was enough to share. We just spent the day in the NICU hanging out with James, taking turns holding him.
Today we got the results back from the MRI that was done a couple of days ago. It appears that James had little in utero strokes early in the pregnancy. Stacy and I looked at each other with confused looks on our faces, wondering if we had both heard the same thing.
“Stroke?” Yes, apparently James had a stroke before he was born. I immediately started fearing the worst. My dad suffered a stroke earlier this year and passed away in June. Fortunately for James, it doesn’t look like the stroke caused too much long-term damage, but we will have to wait and see. They took some blood to check for clotting to see if maybe his stroke was caused by a clotting disorder.
Both the EEG and ECHO results were fine. They didn’t see any issues with either test, and it doesn’t look like he is having seizures, so at least we got some positive news today.
Genetics ordered more tests to see if James has some sort of metabolic disorder. A person’s metabolism includes all of the various reactions that take place inside the body to convert or use energy. Most people think that metabolism is how well their body breaks down and uses the food they eat. When I was a kid, I was thought to have a high metabolism. I could eat anything I wanted and not gain weight. But the metabolism does more than just break down the foods we eat to release energy. It also transforms excess nitrogen into waste products that is excreted in urine; and it breaks down or converts chemicals into other substances and transports them inside cells. A metabolic disorder is a disorder of the metabolism that causes any of the normal chemical reactions to be less efficient or to not function at all.
Genetics spoke with neurology and said that they don’t see anything that looks “syndromish.” So we can rule out Down syndrome (trisomy 21), Edwards syndrome (trisomy 18), or any of the dozens of other genetic disorders. It may sound weird, but with Stacy getting pregnant with James so soon after we lost Jackson to trisomy 18, I wondered if it was possible that some of Jackson’s DNA was left behind and somehow was absorbed into James. I guess we don’t have to worry about James having trisomy 18 like his brother. I don’t think we could handle going through that again.
One of Stacy’s dad’s cousins happens to be a neurologist at Boston Children’s Hospital so Stacy had a phone call with him to discuss James, what we know so far, and if he had any thoughts or questions we should be asking the neurology team here. He asked if our neurologist here could send the MRI film to him in Boston so he can look over it and show his colleagues. He recommended we take James to Children’s Memorial in Chicago to get a second opinion and see what their thoughts are. And he said that babies’ brains are like plastic and can repair themselves. Let’s hope he’s right and any neurological deficits that James currently has go away with time.
