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Grace’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your prayers during this time when it matters most.

At our 12 week ultrasound on October 2nd, a cystic hygroma was detected when they did the measurements at the baby's nuchal translucency screening.  The size, 10mm we were told, was very large as these things go.  The condition is basically a collection of fluid that builds up behind the head/ neck of the baby indicating a potential problem in development.  So the new journey began, a high risk pregnancy and a baby with some potentially serious problems.

A Maternity 21 blood test revealed that the baby has Trisomy 21, Down Syndrome.  This was most likely the cause of the hygroma, but as far as we were concerned, the T21 news was a grace from God.  The test also revealed that the baby was a girl!  After much prayer we decided to name her Grace, because no matter how her story develops in the weeks and months (hopefully years!) ahead God will use her life to bless her family and others no matter how long she is with us.  We are confident that our journey with Grace will be the source of many "graces" from God.

On November 1, our appointment with the Maternal Fetal specialist revealed that Grace's fluid was now collecting in her chest cavity compressing the lungs & heart.  This is considered "pleural effusion" and is very serious in that the lungs would be kept from developing. A heart defect--common for babies with T21--was also detected at this time.  We decided that praying for a miracle was our best option for her lungs as opposed to inserting shunts to drain the fluid. She was about 16 weeks, very small for this kind of procedure.  

Over the next two weeks, the fluid had begun to build up in her abdomen in addition to her chest.  This officially gave her the diagnosis of "hydrops fetalis."  Despite a miracle here and there, the statistics seemed to all point toward death of the baby at any time.

Our prayers for her lungs specifically were answered by the time we went in for the December 13th ultrasound.  The hydrops appeared to be gone!  It is possible for it to come back, but as of right now the lungs are not the major concern.  It is still possible that her lung development could also have been compromised, but we continue to pray that it is not.

Grace has an unbalanced AV canal defect, left dominant. Serious as that is, we have managed to find other babies who have made it through birth to have surgery.  We will continue to pray that she puts on weight, that the hydrops does not return and that whatever else she can be healed of before birth will make it possible for her to be a candidate for surgery.

Latest Journal Update

The BIG 2!!!

Today is the day! Exactly 2 years ago, we were privileged to meet our Grace for the very first time!  We had “seen” her many times before birth on ultrasounds to monitor her hydrops fetalis and complicated heart defect. This was a time of worry and uncertainty. We had good reason to believe that she may not make it to birth or be able to breath on her own. The additional diagnosis of Down Syndrome added to the uncertainty.

On February 21, 2013, many of our fears were put to rest that the hydrops had not affected her lungs! Her heart was stable and even though she was a preemie (6 or 7 more weeks of lung development would have been a great!), she did fantastic and enjoyed most of her time in the NICU as a “feeder & grower.”

This was just the calm before the storm that began 7 weeks later as we began to deal in earnest with her unbalanced AV canal defect. After 3 open-heart surgeries, we seem to have left the “crisis zone” and really have the chance to focus on growth and development.  It’s been a wild ride but worth every minute of it!!

In honor of Grace we are doing something that has the potential to make her future even brighter.   Joining with the LuMind Foundation we are taking the plunge and trying to raise $5,000 for cognition research for Down Syndrome.   One thing that gave us great hope before and after Grace’s birth was that if she lived, she would be born during a time when ground-breaking research is unlocking potential for people with Down Syndrome like no other period in history!  She would be given a chance to live a happy, healthier life with Down Syndrome than could have been expected even a decade or so earlier.  This information, in addition to a whole of lot of prayer support, truly affected our ability to see her through the stress of her many hospitalizations and surgeries.

Between today and March 21 (World Down Syndrome Awareness Day), we will be asking our friends and family to consider joining with efforts already underway to continue improving the lives of people with Down Syndrome. The money raised helps directly fuel research that will help Grace in her lifetime!   I am excited to mention that any money donated for this cause will be MATCHED by a generous donor! How cool is that!  
This the link for your special donation: 

https://lumindfoundation.org/pages/get-involved/honor-grace

Here are just a few other points that influence our optimism:
  • There has been a dramatic increase in the number of researchers working in the field and the initiation of potential treatments.
  • In addition to the rapidly developing field of research, great strides have been made toward identifying the mechanisms associated with intellectual disability in people with DS, understanding the links between Down Syndrome and Alzheimer’s Disease, and finding possible pathways for treatment. (Read more about this exciting research that will directly impact Grace’s future at http://lumindfoundation.org/Down-Syndrome-Cognition-Research )
  • Researchers call these findings unprecedented. "The advances in just the last five years are truly amazing,” says Dr. Roger Reeves, a pioneering Down Syndrome researcher at Johns Hopkins.
It is through your support and kindness that we have come thus far and we are most grateful.  Most importantly, thank you for joining with us as we celebrate our precious Grace's life and build an even brighter future for all of those we love with Down syndrome!