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CMV turned Lissencephaly

Let me just say...there is a special place in heaven for NICU nurses. The care they gave to Beckett as well as us for the whole 6 days, was everything we needed. Having a baby in the NICU is emotionally taxing, but he was right where he needed to be.

On the day he was born, they started running so many tests on him. First they had to test him for CMV. *shocker* it was positive. So they started the treatment plan that our infectious disease doctor wrote up. They immediately started him on his valganciclovir which is the medicine that will rid his body of the CMV, and hopefully repair any damage that had been done to his hearing. 

We had a full body ultrasound done to check for the calcifications that they had seen on my ultrasound. The ones they saw near his kidney and spleen were no longer there. Thank goodness.

A cardiologist checked his heart and found that he had a PDA (a hole in his heart) Many babies are born with that, but a majority of them will close up in the early weeks of life.

*at his newborn checkup his pediatrician said it was gone!

An ophthalmologist came to look at his eyes and found some things in his eyes, that could have been because of the virus, but maybe not. It is likely he will have just have a blind spot, but we will continue to monitor that.

He passed his hearing screen, so that was great news considering that is the main concern with congenital CMV.

Lastly, there was an MRI completed on his brain. This is where our story takes a turn. Remember those calcifications they found on his brain? Well those are still there. There is a cyst on one side of his brain. The main finding of his MRI, and the most concerning part, is the smoothness found all around his brain. The natural folds of our brain, he is lacking. This is called Lissencephaly. All of this news was devastating to hear.

To say we cried a little bit would be an understatement. I immediately thought of the Houston Texans former head coach Bill O'Brien. His son has Lissencephaly. I remember watching the Texans portrayed on Hard Knocks a few years ago, and I've seen some interviews of Bill O'Brien talking about his son, and it's all so sad to watch. And that was going to be us. There is nothing we can do to change this diagnosis. Will he ever sit up? Will he ever stand? Will he ever walk? Will he ever talk? Will he ever smile? All of these things are the unknowns of this disease and every case is unique. Beckett will write his own story.

They ran all of those tests on the first day we were admitted. I was already hormonal and emotional after having just delivered a baby, and I was trying to navigate feeding him with all these different cords connected to him. And trying to wrap our heads around all the news we have been given regarding his diagnosis. It was a lot to handle.

Beckett wasn't thriving either. He was so sleepy, so he didn't want to eat. He dropped down to 4 lbs 11 oz, from his birth weight of 5 lbs 3 oz. He had to be put on an IV because he couldn't regulate his sugars. He was under a warmer because he couldn't maintain his temperature. It was all so sad, and completely new to us.

What was consistent was the compassion we received from our nurses. Every single one of them was so kind and helped us navigate this new journey we were on. 

On day 3, he started doing better. We were able to start weaning him off his sugars. He was eating so much better. He was able to come out of the warmer and into a normal bassinet. He just needed to gain some weight. So we stayed a few more days as he continued to eat more, and gain more weight.

Finally, on day 6, he had done everything he needed to do to be able to come him with us.




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