To Make A Short Story Long

Each time something has happened with Grace, I am overwhelmed and humbled by the prayers, love and support that pours out from our friends, family and even complete strangers. I hope that I can be the same comfort to others when they need it. Thank you, thank you, thank you.

There may be some people who don't know what happened with Gracie and why she needs the attention she does. So I thought I'd start at the very beginning ("A very good place to start.." name that movie!). So here's the story...

Cutest. Baby. Ever.

I was having a routine ultrasound during my last trimester when a problem was discovered with Grace's brain. We were referred to a specialist, had another ultrasound and the problem was still there. For some reason, the ventricles in her brain were enlarged. On September 15th, I had an MRI to get a better look at her brain. On September 16th, we went into the specialist's office expecting to hear that the MRI showed nothing and it had all been a fluke. Instead we heard that our unborn baby had a severe brain bleed and would need to be born via c-section very soon to minimize the damage to her brain. On September 18, we welcomed our sweet Grace Elisabeth into the world - four weeks earlier than her original due date. We saw her briefly before she was whisked away to the NICU.


Over the eleven days Grace spent in the NICU, we learned that she had a stroke around the sixth or seventh month of my pregnancy. A stroke in utero can be caused by an infection, a serious injury (the example we were given was a baseball bat to the stomach!) or a genetic issue. Since I hadn't had an infection or injury and there was nothing found in our genetic testing, we don't know what caused her stroke. Blood clots from the stroke prevented the cerebrospinal fluid from draining properly and she was diagnosed with congenital hydrocephalus. Grace had a shunt placed at four days old to drain the excess fluid from her brain into her abdomen where her organs absorb it.  

Gracie with her patch, hanging with Hello Kitty

We were told that Grace should not have any type of mental delays, but to expect developmental delays and possible weakness on her left side. She does have some developmental delays and rarely uses her left arm/hand. She has optic nerve damage from the pressure in her brain, but we won't know how much her vision is impaired until she's 2 or 3 and can tell us what she can see. At this point we think her vision will be her biggest obstacle and the main cause of a lot of her developmental delays. (Most babies learn to roll because they see a toy they want to play with, if she can't see the toy - she has no incentive!)

Grace keeps her hand in a tight fist with her thumb tucked in between her little fingers most of the time.

We learned on Tuesday that her shunt has malfunctioned and will need to be repaired or replaced. She goes in Saturday at 2:50. The neurosurgeon will inject dye into her shunt to see where the blockage/malfunction is then perform the surgery to repair. She will definitely have an incision on her head (and have her poor little head shaved again!) and possible have an incision in her abdomen if the tubing needs replaced. She will be in the hospital for about two days.


If you are still hanging with me, thank you for reading our journey so far! I will post updates about Grace as we know more. Thank you so much for your prayers!