I am writing this tonight after the hardest day of my life. I haven’t written in a while because I haven’t had the words. We hesitated in writing because we didn’t want others to judge us. Ultimately God is the only one who can judge us. He tells us as Christians not to judge others. I want to share our story for people who are going through the same thing as us. I hope this can help them as we have been helped by others through our situation. Here is our story.
As you know, our Olivia Grace was confirmed to have Trisomy 18. This is a fatal chromosome disorder. These children are considered not compatible with life. We knew the issues we had in front of us as we ultimately knew our Olivia Grace was going to pass.
Our networks ran wide. We talked to doctors, families, friends, elders and others who have gone through the situation. Our greatest asset was a website that provided a support group only for parents who have a child diagnosed with Trisomy 18. This site guides you through everything. It is a non biased site that gives you stories of families who have been though every choice and situation and then showed birth plans of these families. These stories were amazing and ultimately helped comfort us and helped us make a decision.
The best advice I got was from a NICU doctor that said a Trisomy 18 child was born dead. Any procedures done would be putting your baby on life support trying to extend their life a few days. This is done with by resuscitation, breathing tubes, and feeding tubes. The baby can not live on its own.
This left of with two choices, an early birth or going to term. Both had their advantages and disadvantages. This was the hardest choice we have ever made.
There was a chance we could go term. 90% of all Trisomy 18 children die before term. If your baby makes it to term you first have to choose if you want to put them on life support or not. Putting her on life support means she would be connected to many tubes providing both food and oxygen and trying to get a day or two of life out of them. A lot of people who choose to go term decide not to put them on life support and to just hold them and comfort them until they pass.
We choose to give an early birth. This was the hardest choice we have ever made. I think the hardest thing was the moral decision. Kate and I never thought we would ever have to make a decision like this in our entire life. I believe God lets us make choices in our life. We pray that our choices are right. We will pray that we made the right choice for the rest of our life. If I didn’t make the right choice I pray that God forgives me for my sins. I will also pray for this every day of my life. My ultimate goal is to join God in heaven. I now have added incentive as I will get to meet my daughter when I get there too.
In our choice we knew that we would not have to hook Olivia up to tubes. We didn’t want her to suffer. We didn’t know that given the situation that we could say that we didn’t want to give her life support. We didn’t want to have to make that decision. Who can make that decision for their child even though you ultimately know she is going to pass. Through this I think we were comfortable in our decision.
Monday, December 7th we went in to the hospital. Olivia Grace was 22 weeks old. We started the medicine around 11:00pm and continued it though the morning. God answered our prayers with the two best nurses we have ever met in our lives. I don’t believe we could have made it without them. They will never be forgotten. Tuesday, December 8th at 2:32 Olivia Grace was born. I got lost in the pregnancy with a sense of excitement. She was the most beautiful thing I have ever seen. We wrapped her up and held her. We sang to her, we prayed for her, we rocked her and studied her. We don’t ever want to forget her. Kate says she looked like me. Olivia had Kate’s chin, my mouth and nose. She had my dark hair. She was beautiful. She was going to be tall with long legs and perfect feet. We held her for hours just loving her, telling her stories and how we can’t wait to meet her in heaven one day. The part that I would never fathom was that this was a joyous time. I wasn’t sad. I loved every minute I spent with her. We let her go at 8:10. This was the hardest time of my life. We cried for hours and prayed for sense of peace and understanding. We prayed that she was sitting by God, totally healed with a smile on her face looking down upon us. We will be with her one day. We will know her.
Grieving is a tough thing. We have mementos to remember Olivia Grace by. They put her in the cutest little pink hat to keep her head warm. We took foot prints and hand prints. Her feet are perfect and her hands perfectly show the imperfections of Trisomy 18. We took pictures with her to store in a memory box with her tiny little blanket she was wrapped up in. We will continue to talk, pray and cry. We need each other, family and friends. Your prayers are our strength. Your love doesn’t go unnoticed and will be passed forward. Thank you.
Through this Kate and I have been closer than we have ever been. We have been closer to God then we have ever been. We have prayed and been prayed for more than we could ever imagine. We know God has plans for us. He will use this in our lives. He already has.
Through this I got to hold the most beautiful baby girl I have ever seen. I got to rock her and tell her that I love her. I got to tell her how I can’t wait to hold her some day. I know she will be waiting for me and will be looking down on me to help guide me through life.
I ask everyone who has been praying for us to continue to pray for us. We are only part way through the journey. Pray for Kate. Her heart needs healing. She is strong. I could never imagine being a mom going through what she has had to endure. God bless her. Thanks for everyone being by our side. If anyone is ever going through something like this, we are here for you. We understand.
Olivia Grace Bryan
Born December 8th at 2:32
Ascended to heaven at 4:15
10.58 ounces
9.75 inches
God Bless our Olivia Grace
