Today was an important day. We think we have a diagnosis. This is a good thing.
I started my day at Browns training camp with my mom and brother. That's another story. But, because I was at training camp, Rachael went to the hospital by herself. This made me a little nervous because I knew we were expecting the results from a blood test today that she took about two weeks ago. I feared that she would get the results without me present. Turns out that almost happened. When I came into the NICU Rachael was in the "NIC Nook" with the doctor. Odd. So I sat down. Then one by one a series of people filled the room. Okay. I had a good idea what this was all about, but the suspense as you can imagine was killing us. As we waited for the room to fill we small talked about our professional lives etc...come on already people, eventually the doctor informed us that Rachael's blood test came back positive for the antibodies that cause Myasthenia Gravis. The number of antibodies was also quite high. Strangely, this was just the news we were hoping for.
As most of you know from reading this blog or otherwise, our babies have a hard time swallowing, were born with finger contractures, and have breathing issues. When these symptoms were first developing the doctor asked us if anyone in our family had these issues. No. It became clear that the issues Jack and Riley were facing went beyond prematurity. 35 1/2 weeks is hardly premature, believe me. So this has made us absolutely crazy over the past three weeks. Anyways, one night a few weeks ago Rachael made the connection that they could have neonatal myastenias gravis. She was diagnosed with an occular form of myasthenias gravis, now in remission, a long time ago, and after researching it on the internet found that our babies have all the symptoms associated with the disease. The following day, about two weeks ago, she handed the doctor a bunch of print outs on the disease. This isn't a common disorder, and the doctor needed to look into it. Besides all they need is another webmd doctor. But they weren't prepared for skill of this doc. The decision was made to have Rachael do a blood test in order to find out if she is carrying the antibodies that cause the disease. The test took two weeks. In the meantime we had all kinds of fears for Jack and Riley, but hoped that the neonatal myasthenias gravis was the answer. Turns out that the neaonatal mg is a transient disorder and typically works through the system in 4-6 weeks. Could be longer, could be shorter. Also, babies with neonatal mg are expected to have a spontaneous recovery.
So although it is not the best case scenario, this is good news for Jack and Riley. The doctor, with the results of Rachael's blood test coupled with the babies symptoms, is very confident that this is what is wrong with the them at the moment. The doctor told us to expect a long haul, but in time they will get better and should have no long term problems.
It is hard for me to accept the news (being somewhat positive) but it makes sense. I'm cautiously optimistic. I will be convinced when I see them take down a whole bottle of milk, but it seems like we have a diagnosis.
For now we are just waiting for the time when we can finally say that this has all been wonderful, but now we're on our way.
Phish, Down with Disease