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Eliza Joy

7/1/2018

5 Comments

 
Picture
       A little over a week ago, Brooke and I went in for her 21-week ultrasound appointment. Regarding gender, we decided to stay in suspense for a few days so that we could have a gender reveal party with a few of our closest friends. It's a girl! We've decided to name her Eliza Joy and couldn't be more thrilled to be having a girl. This is the good news. 
​
       Unfortunately, there is also bad news. At these ultrasound appointments, we have no idea what we're looking at unless it's the hands, feet, or head. All of these were present. We heard her heartbeat, saw her moving, and everything seemed normal to us. Though it was abnormally long, we left that ultrasound appointment with no indication that there was anything wrong and Henry walked out as excited as ever. He couldn't stop telling Eden, "Look, Sissy! It's your new friend!"
​       Within thirty minutes, Brooke received a call asking us to come back in. They invited us to visit a high-risk doctor in the area and that it'd be ideal if we could come in right away. "In the meantime, drink lots of water. Your fluids are low," they told her. 

​       We never could have fully prepared for what was next. "How much have they told you?" the doctor asked. "Nothing? Okay. I'll tell you what I know and what I don't know." (Immediately followed by the longest fifteen seconds of our lives.)
​
       Our sweet Eliza has Potter's syndrome – sometimes called unilateral/bilateral renal agenesis. Over the last few months, everything has been developing normally – hands, feet, heart, brain... everything. Everything except for her kidneys. Because there are no kidneys, there is no amniotic fluid. And because there is no amniotic fluid, the lungs won't properly develop. Inside the womb, Eliza can continue to grow in the tightest of spaces. Outside of the womb, she won't be able to survive. 
       Since finding out, I've been reading everything out there on Eliza's condition. And friends, it's not good. Estimates suggest that this happens to something like 0.01% of babies. Of those, the majority have some type of kidney issues in their family history. Brooke and I have both kidneys (fully functioning – to our knowledge) and have found zero trace of kidney issues in either of our family backgrounds. Taking that into account along with the already long odds of receiving this diagnosis, it feels like we've just hit the worst lottery of all time. 
       "There is no hope," our doctor concluded. A little under half of babies with this condition are stillborn and the remaining typically get a minute or two before they are unable to breathe. This is a terminal diagnosis. 

       As you might imagine, we are devastated. The past week and a half has been a roller coaster, filled with lots of tears and sadness. And yet, we both know that our darkest days are still ahead of us. 
We are going to continue on with the pregnancy and enjoy her presence as long as we have her with us. Natural causes may take Eliza's life, but we will not. We love her because she is our baby girl and we are going to provide for her and protect her until God welcomes her home. 
       Because so many of you out there are just awesome, we know you'll be asking what you can do to help us during this time, and the answer for now is prayer. Pray for our family in the coming months and especially for Henry, as we talk through this tragedy with him. We are in the calm before the storm, preparing for what's coming in the fall. Then, we will need you all more than we ever have. 

​       Before we walked into that doctor's office and received the worst news of our lives, Jesus was enough for us. We had committed our lives to following Him, but not because of what He would give us. We've never expected comfort, wealth, or a perfect family as a result of following Jesus. We follow Jesus because we believe He is who He claims to be – God. And Jesus, God in the flesh, gave his life for sinners that we might be reconciled to Him. Because He was enough for us then, He is still enough for us now. 

​Through tear-filled eyes and hope-filled hearts, this is our song:

My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame
But wholly lean on Jesus’ name

On Christ, the solid rock, I stand;
All other ground is sinking sand
 All other ground is sinking sand

When darkness seems to hide His face
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil

On Christ, the solid rock, I stand;
All other ground is sinking sand
 All other ground is sinking sand

His oath, His covenant, His blood 
Support me in the whelming flood;
When all around my soul gives way 
He then is all my hope and stay 

On Christ, the solid rock, I stand;
All other ground is sinking sand
 All other ground is sinking sand

When He shall come with trumpet sound 
O may I then in Him be found;
Dressed in His righteousness alone 
Faultless to stand before the throne
​
On Christ, the solid rock, I stand;

All other ground is sinking sand
 All other ground is sinking sand
5 Comments
Carmen Adwell
7/1/2018 03:38:11 pm

My heart aches for you. We traveled a similar journey with our baby granddaughter. I'm so thankful that you will have God every second of each day. Our prayers are with you all.

Reply
Brianna
7/1/2018 04:00:25 pm

May the Lord bless and keep you though this hard time. I'm so glad you guys will be giving her the best life possible as long as your able. I know this must be rough. I will add this down in my prayer list. Is it okay if I share this with my small group? We go to Valley Creek Baptist in Elizabethtown KY? I'll be praying today and continue to do so. May I ask when the expected due date is? Love and heart hugs

Reply
Jay and Brooke
7/1/2018 10:02:25 pm

That’d be great, thanks for asking. We’ll deliver sometime in October.

Reply
Kevin and Cathy Ray
7/1/2018 10:01:50 pm

Jay and Brooke, we are heartbroken for you all!!! There are just no words except Jesus! Please know that you
will all be on our hearts and in our prayers including your sweet Eliza Joy! We love and miss you all!

Kevin and Cathy

Reply
Peggy Walker
7/2/2018 01:42:51 pm

On Christ, the solid rock, I stand with you! Praying...

Reply



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