Tuesday, June 3, 2014
Forgiveness and growing
When Ashton was born, they believed he had something called a Urea Cycle disorder. I remember the day so vividly. I remember my heart stopping when I heard his doctors voice on the other end of the line.
It's urgent. He needs his blood drawn again. Urea Cycle disorder. Goodbye.
I remember holding Ashton in my arms while I read about the disorder on various websites. The more I read, the more I cried and it was all so very hard to grasp.
I called my mom and she said it was ok to cry. My brother Joel hugged me. "That's horrible news," he said.
All eyes were on Ashton.
More blood tests and a hospital visit later, we were blessed with the good news that he did not have it.
Our entire family breathed a huge sigh of relief.
Life rolled along.
We haven't thought of it much since.
On April 4th, Eli was transferred from St. Josephs hospital to the NICU at Crouse. My heart stopped when we were told something was wrong.
Heart defect. Coarctation. Urgent. Give him kisses. Say Goodbye.
We cried and it was all so horrible. He was whisked away in an incubator as he screamed for his mama inside. Brought to Crouse by ambulance.
All eyes and prayers were on Eli.
A few days after being in the NICU, they did a third scan around his entire heart before they were going to send us to Rochester for surgery.
"No Coarctation," they said. The full scan no longer showed anything of concern.
The nurses said his cries were dusky. They didn't believe the news. We praised God and told all of our friends and family he was doing well and coming home within the next day or two.
The following day, we came in prepared to bring our baby home. They had taken his umbilical lines out. He was off the Prostin medication that he was given to keep a valve in his heart open.
His heart rate soared. He needed oxygen. He was given emergency heart medication through an IV they placed in his head.
One of the nurses told us it was a blessing he was on the monitors when this started happening. An angel was looking out for him, she said.
Another weekend came and a younger cardiologist came in to speak with us. "We aren't really sure the cause of the episodes. Dr. Byrum's theory is that everything that was being done to him for the Coarc, caused a lot of stress to his heart."
A day later, we asked Dr. Byrum why this happened. "It happens because.... just because," he said. I was quiet. Maybe I should have spoke up. My mama heart had been suspicious of something since day 2. but I trusted the doctors.
He was poisoned. It was all I could think about. Feeling desperate to go back in the past. Scoop him up and run away. Please don't hurt him, I'd say. Don't hurt my baby.
I had this dream where the nurses kept coming at him. Shot after shot as I was held back and cried.
As I still try to sort this all out, I wanted to share this difficult part of the story with everyone.
Trying hard to roll along. Accepting. Forgiving. Knowing we may never have all the answers but God holds us tightly and that's all that matters.
My best friend Amy started sewing and praying for Eli the day he was sent to Crouse. I am so grateful for those prayers said with every stitch. We are so grateful for every prayer spoken from all of our family and friends.
We live in a broken world. Humans make mistakes. We don't have all the answers but God in heaven does. That is what we hold on to. That is what I hold on to. Constantly learning the true meaning of trust, hope and forgiveness.
Made by Amy
Eli is 2 months old now!
He rolled over at his checkup yesterday. He smiles and coos. We have heard a few laughs. Dr. Byrum believes they will try to stop the Digoxin in October and see how his heart does. Our growing boy. So grateful.
Each year, we've had a special tradition where we go out and buy all things summer for the kids. It usually includes new sand and sand toys, sometimes a new kiddie pool if it's needed. ...It's always needed.
We have officially felt summer the past two weeks. It's hard to believe it's here again!
Eli's first picnic
Teeball has been going great. Ashton truly has a love for it.
Josie plans to play next year. I can't wait.
Memorial day weekend -
Camp out in the living room! (Which we actually did again this past weekend and plan on doing every weekend of the summer).
Sheep shearing festival with the Irvines.
Julia told me Ashton was the first one to do this on the zipline all morning.
Josie wore her "sheep coat" ...as she calls it.
Sadie, Amelia and Nora's birthday party
We love this family. So proud to call them our friends.
"Guy in the purple shirt." He knew about Starcraft. Ashton adored him.
-Liam and his quilt 2 years ago-
A new fire pit!
Living room camp out night 2
After going back and fourth with this post for several days, it's finished. I always feel accomplished at the end.
Thinking of you.