Baby Girl’s Story

Site created on February 23, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.

After a difficult start and fertility issues, Zane and I were blessed in September to find out that we were pregnant, and that we did it without treatment! With all the pains (and nausea) of the first trimester in the books, we were so excited to share our big news on Thanksgiving Day with all of our friends and family. A few more ultrasounds and an amazing 3D scan later, we were shocked, and excited, to find out at our reveal party on New Years Eve, that we were having a little girl 💕😊

In January, we went in for our routine anatomy ultrasound and of course our little one did not cooperate (shocking 😉), and the tech was not able to get all the images that they needed, so we had to schedule another appointment. A week or 2 later we came back and, though baby girl still wasn’t in the mood, we were able to get the needed pictures. Once the ultrasound was done we meet with the PA who informed us that because of the quality of the image of the heart, they couldn’t tell if there was a shadow or if there was possibly fluid around the heart. With this concern, we all agreed that an ultrasound at Toledo Children’s with there higher quality equipment was the best next step. Of course the worry set in and the anxiety was high, but thankfully we were able to get in quickly.

The day comes for our ultrasound with Toledo and we head in. During the scan some of that worry and anxiety lessened as we got to again see our little girl moving around, heart beating, and interesting images of each part of her body. Unfortunately, that moment of euphoria quickly left when the doctor told us that, though there was not a concern with the heart, baby girl’s right radial bone (big bone in the forearm) was missing, and the ulna (small bone in the forearm) was short, leading to a diagnosis of something called Radial Rae.

Disappointed with the lack of information the doctor shared, and a conversation with their geneticist that left us with more questions and confusion then answers, we returned home with more panic, frustration, and sadness then before. Not satisfied with how things were left, we decided to start doing our own research, follow up calls, and asking friends and family (thank you!). All this led us to the need for a second opinion and asking for a few more tests to help us determine what specifically baby girl had and how that would impact the rest of our pregnancy and our birth plan. This has lead us to Cincinnati Children’s Hospital, and is where our story will continue soon...

Newest Update

Journal entry by Jessica Powell

We have had a big summer to say the least! 
Zoey has done more in her almost 11 weeks of life than most babies.  She’s been on trips, hikes, to parties,  VBS, the fair...she’s spent lots of time in the car, some time on the boat.  Has had her toes in two of the great lakes...she has had X-rays, ultrasounds, bloodwork.  She has completely stole our hearts.  We are amazed by her every day.  She is a little miracle.  

We went to Cincinnatti childrens this week and had a great visit.  Genetics has no concerns, but they will probably see her again just for a check in and to decide if we need anymore testing before we give her a sibling (which won’t be anytime soon).  We loved Dr. Leslie and she loved our little Zo.  We also met Dr. Little in orthopedics who gave us lots of good information.  We won’t know Zoeys options for her hand and arm until she is a little bigger.  It’s hard to see how much she can really use it until she’s doing more with it.  In the next year or so we will decide if surgery or leaving Zoey how God made her will be her best option.  In the mean time we met an awesome pediatric OT who is having us so daily stretches with Zoey and work on tummy time.  We will collaborate with a pediatric therapist here and return to Cincinnatti in 4-6 weeks to see how the stretches are going and if Zoey will need a brace.  We are so thankful and feel so good about our team!

Zoey is meeting all of her milestones.  We think she will be rolling before we know it.  Right now she is mastering rolling from tummy to back and holding her head up.  She is making great progress with both.  She’s the sweetest baby.  Her smiles melt our hearts.  

Please continue to pray for her.  That the stretches give her more mobility and that she continues to meet milestones and grow!  Also pray for our family as mommy goes back to work Monday.  I’m not sure how Zoey and I will do being apart but I am so blessed to have great people to watch her and that I got 11 whole weeks of her with minimal interruptions.  

We love you all!  
Jess, Zane, and Zoey 
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