MRI results, in the simplest form I can try to relay them:
1. Severe asymmetric ventriculomegaly (fluid on the brain, and significantly more than was there at 20 weeks)
2. Cervical meningocele (spina bifida) at the cranial vertebral junction.
3. Microphthalmia with tiny dysplastic left eye (extremely underdeveloped)
4. Cleft lip and palate.
At the ultrasound yesterday they were also able to see that his heart is slightly facing the wrong direction. And, of course, we know about his clubbed foot.
The discovery of his tiny dysplastic eye brought greater concern about genetic abnormalities. One too many birth defects is cause for concern that the problem could lie in his chromosome makeup. With this knowledge and encouragement from the doctors, we are reconsidering having the amniocentesis done to determine what we are up against.
We will be set up with neurologists at Primary Children's Hospital, and hopefully get an appointment in 2 weeks. We will discuss with them if there are any options for surgery or help they can offer Max's condition. Based on what we are able to find out there will help us decide the next step and creating a plan. If there are things we can do for him surgically, that offer him some form of quality life for some time then we would want to have an amniocentesis to determine if, genetically, he is compatible with life. If he is we can make plans to deliver at the University of Utah, where he can be taken to Primary's immediately for surgeries.
If he isn't compatible with life, or if the neurologists don't see a good outcome for his condition, we could opt to have me deliver at our local hospital and enjoy however much time the Lord gives us with Max.
So, for now, we wait for our appointment with Neurology.
Let me be honest with you, people. I do not feel brave. I do not feel amazing.
I feel overwhelmed. And anxious. And SO tired.
I also feel completely in love with this wiggly baby boy growing inside of me. I am not anxious about being Max's mom. Getting the opportunity to be his mother will be the greatest honor of my life. And I'm certainly not worried about Tyler being Max's Dad. Hello, if you know Tyler at all you know he is the perfect Dad for the job.
What I'm worried about, what I am most scared of, is having so little time with Max. The conditions that he faces are so, extremely serious. Even with miracles I very well believe can happen, he is still going to have a lot of problems. And it is likely that his time with us could be very short. Now, I don't know what "short" means when it comes to a lifetime. Hours? Days? Months? Years? But when you are a parent, anything less than your own lifetime is just too short for your child.
I wasn't alive yet when my parents lost Shaun. Their firstborn son died, unexpectedly, at just a few months old. I spent many Sunday afternoons growing up looking through Shaun's photo album, staring at the pictures of that tiny casket and the sweet, sleep-like baby in the little sailor outfit that lay inside. No matter what sadness I had endured then I could not begin to imagine how that must have felt for my parents. What kind of indescribable pain bursts in your heart when you bury your baby? Now, my fear is that I may just have to find out what that pain feels like.
The Lord has made us strong, stronger that we could ever be on our own. I know He will continue to carry us and hold us up as we faithfully endure the trials that come.
But, gosh, I just don't know. If I'm just totally honest. I just don't feel ready for that. I'm ready for any challenges of parenthood and raising a child with special needs. I'll take it. I'll do it! I can do it. I know I can do this if he survives. If he survives we will love him and help him and get him through whatever comes. But if he doesn't?? Oh, I just don't know.
So, what do I know? I know that the Lord love us. I know that whatever is meant for Max's life we will accept, despite the pain. I know that Tyler and I can do anything, get through anything together when we are teamed with our Lord and our Savior. I know that no matter how inadequate I feel for this challenge, somehow Heavenly Father will make me adequate. I know that families are forever, and even if we lose this sweet boy at some point, we will be together again in Heaven someday.
I know that we are loved and prayed for by many, and we hope you all know how grateful we are for that.
Just keep praying.