Hey family and friends!
We are still overwhelmed by God’s goodness to us! We cannot believe God has allowed us so much time with our beautiful little girl! She is 8 days new and still going so strong!
I am just writing to give y’all a little tiny update!
Yesterday, we took Annalise to her one week checkup. It was the first time we got to leave the house! It was kind of exciting being able to pack a diaper bag (even if it was for one little trip to the doctor). Of course I had to document the first trip so here you go! 🙂
We were so proud of her! She did so well and all of her vitals were perfect. It was during this visit that we talked about doing an ultrasound on her head just to re-look at things. Now that she is out of the womb, they can clearly see what is in her head.
So….after thinking about it and praying about it….we went to Children’s Mercy today and did the sonogram.
We were in for such a shock!
First, Annalise got her blood drawn. I was a nervous wreck. She never had any blood drawn or any type of “pricking or prodding” done at Shawnee Mission because she wasn’t expected to live. So we didn’t want to spend the time doing that instead of having her with us. Needless to say, having her first needle put in today was terrifying. I didn’t know how she would react but she was such a trooper! She barely even flinched. She is such a tough fighter.
Then we went back to do the sonogram. After the lady looked around for awhile, she went and got the radiologist. The radiologist first asked us what we were told she had. We explained how she was diagnosed with alobar holoprosencephaly and hydrocephalus. He (the radiologist) then told us that she does NOT have HPE.
So for the past 18 weeks we have been trying to digest and understand all we could about HPE just to find out she doesn’t have it?
Boy, are we on a roller coaster ride!!! (Where can I get off?)
Come to find out, Annalise is now diagnosed as having hydrancephaly. This is where the brain’s cerebral hemispheres are absent to varying degrees. So from what we understand right now, Annalise does have brain tissue and her hemispheres. It’s just that the ventricles, where the fluid is stored, were larger than they should be when formed. So the brain had to form around the ventricles in a sense. Because of this, the fluid was building up so much that it just pushed the tissue to the outer rims. All that to say, the brain is somewhat there, it just isn’t fully formed. Her brainstem and cerebellum are completely developed though which is why she is doing so well.
We actually left Children’s Mercy feeling pretty hopeful because the radiologist made it sound like she could live but would just have learning disabilities. But then we got home and got a call from our pediatrician. She told us that the outcome is still going to be the same. But some children with hydrancephaly can make it for up to a year. We then asked about draining the fluid and if that would help. She told us that they could put a shunt in to where the fluid would drain into her body and she would just pee it out….but doing that means undergoing surgery. Our pediatrician told us that a lot of babies with this condition who undergo this surgery end up getting an infection from it….and that this infection usually ends up making the baby pass.
So here we are on this NEW unexpected journey…trying to figure it all out, AGAIN!
Am I completely overwhelmed, exhausted, and shocked? Yes. Do I still believe that this is all part of God’s plan? Yes.
Just like Kevin said yesterday: God is sustaining her and will continue to do so until He calls her home. God has numbered her days and He is the only reason she (or any of us) is alive today.
We are so incredibly grateful for the days we have had with her and the ones yet to come.
And honestly….we know ultimately that one day we will see her again and she will be without pain, without her conditions, and she will be with the Savior.
But for now, we just ask for prayers in the coming days as we find out more about this new journey.
We love you all and can’t wait to share more of our little fighter with you!