12/14 - MRI Results

Wow, where to begin.....

The MRI revealed significant issues with Leo's brain. His cerebellum and brainstem are both malformed and underdeveloped. The cerebellum's primary function is controlling coordination and balance, and it also plays a role in speech development. The brainstem is a key part of the brain because it relays signals between the spinal cord and the rest of the brain. It also controls key bodily functions like breathing, heart rate, blood pressure and sleeping. As you can imagine, this news was devastating. Since all of Leo's genetic testing came back normal, they are not sure why this happened to our little guy. These parts of the brain form very early in the first trimester.

Leo's doctors had warned us there could be problems with his cerebellum and brainstem based on the symptoms he has presented since birth. He currently shows low tone in his upper torso which makes it hard for him to control his head (classic sign of cerebellum issues). He also shows signs of paralysis on the left side of his face, including not shutting his eyelid all the way. In addition, he does not suck or gag properly. He seems to forget to breathe and needs a little oxygen support when he gets really upset, feels pain or is in a deep sleep. These are all symptoms of issues with the 12 cranial nerves that make up the brainstem. We realize we are facing some significant challenges with the neurological diagnosis, but doctors have told us the brain is constantly rewiring itself and doing amazing things. We can only hope and pray that our son's brain does the same.

Sorry we have not updated the blog in a long time and we realize family and friends are concerned. We just needed time to process this news. When we found out we were having another baby we planned for our son to be a little boy version of Sammie racing around the house making clever remarks. In the past week we had to grieve the loss of the little guy we had planned for and accept our new reality. Leo is already bringing so much joy to our life and we love him so much. He is still going to reach milestones and progress throughout life. It will just be different achievements and at his own pace. We are taking life one day at a time and believing that God won't give us more than we can handle.

Last night I read Leo the book "I Love You Stinky Face" (one of Sammie's favorites and a gift from the Stover's). In the story a little boy tests his mom's love by asking relentless questions like, "But Mama, but Mama, what if I were a super smelly skunk, and I smelled so bad that my name was Stinky Face?" Of course the mom reassures the little boy of her love with cute responses about how she would accommodate his every need. The message really hit home last night even though I have read the book to Sammie hundreds of times.

Just some updates on Leo's overall health outside of the MRI...

On Monday, Leo is having the G-Tube placed in his stomach and the feeding tube will be removed from his nose. We are all in agreement this is the best option. It doesn't take away the possibility of him eating one day in the future, but does let us make a huge step forward on the path to going home. The minimum recovery time is a week and it is considered a "routine surgery" to the doctors, but still a major surgery requiring him to go back on the ventilator. We will give some more details on the g-tube in a later post.

Until Friday morning, Leo was on oxygen support that could not be provided at home. The doctors were being really discouraging and not providing any recovery path to get him off the oxygen. They were saying his brainstem issues were causing his d-stats so they were not sure what to do...I was thinking we can't live here forever! Then on Friday, they randomly took him off all oxygen and breathing support at 10:30 a.m. and he lasted until 8:30 p.m. with nothing.  He now has some support, but it is the kind we can use at home so this is giving us good hope we could come home around Christmas time. 

We really appreciate everyone's love and support. The calls, cards, thoughts, prayers, visits, gift cards, food and everything else all of you have done are really appreciated. We take comfort in knowing there are so many wonderful people waiting to help whenever we need it.