Nolan’s Story

Site created on December 21, 2019

In August of 2019 we discovered that we were pregnant. We couldn’t be more excited - we had been hoping to add to our family and we just knew that Cece would love being a big sister!

A few months later, in early December, we had our 20 week appointment that included an ultrasound. It was then we found out we were having a boy! We had decided that if the baby was a boy we would give him the name Nolan, one of his daddy’s middle names.

An hour after our ultrasound, we got a phone call from our OB doctor. We were informed that our little Nolan showed indications of a cleft lip and palate. In addition, his umbilical cord only had two vessels instead of the typical three. Based on these two findings our doctor recommended that we do some further testing for additional issues. The cleft lip/palate and the umbilical cord were hard to hear about, but as we learned more about them we realized that cleft lip/palate can be very effectively treated and that the umbilical cord causes no problems in many pregnancies. However, the strong recommendation to have some further testing gave us some reason for concern and we followed through with this as soon as possible.

Our next regular OB appointment felt like any other appointment: weight, blood pressure, standard questions about how things are going... When our doctor came into the room everything changed in an instant. After greeting us her next words were, “We have some things to talk about.” The test indicated that Nolan has something that we had never heard of before: Trisomy 13. The conversation after that isn’t easy to remember. Is there a chance this is a false positive? Yes, but based on the other findings not likely. Is this similar to Down syndrome? Yes, but more severe. How long will our baby live? Likely only days to a month, if even that. Is there a cure or any effective treatment? No, I’m so sorry...

After learning about what we were all facing during that last appointment we decided we wanted to share Nolan’s name with others sooner than we had initially planned on. We had been having trouble finding a middle name that we thought fit him however. That same night we were talking through names when we came across one that was perfect, Isaac. His first name, Nolan, means “chariot fighter” or “champion”. Isaac means “he will laugh” or “he will rejoice”. We have the hope that our little champion will one day rejoice. Our time together in this earth might be short and difficult but we look forward to the day we can all laugh together in Heaven.

We hope that this is a place you can get to know Nolan and share our journey with us. Please keep our family in prayer as we navigate this difficult path. We also hope you can see the beauty in this precious life we have been entrusted with - short and difficult though it might be. Thank you for your love and your support!

Love,

Jessica and Christopher

Newest Update

Journal entry by Christopher Perry

Today we buried our baby boy.  It was difficult to say goodbye again.  Cece, as always, was cheerful and brought many smiles to our faces.  Nolan has a beautiful spot where we will come and visit him - always looking forward to the day we meet him again. 
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