Wednesday, December 9, 2009

Our Baby Girl Olivia Grace

Olivia Grace Bryan was born on Dec. 8th at 2:32. She ascended to heaven to be with Jesus at 4:15.

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.

We have never had so many people praying for us in our entire life. Thank you everyone. We could never get through this without you. Your prayers have been our life blood through this situation.

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

Tuesday, November 24, 2009

Trisomy 18

It was confirmed today.  Olivia Grace has Trisomy 18.  This diagnosis is a fatal chromosone disorder.  The chances of survival are very slim. 

I do think today we have some peace of mind that we have answers to many questions.  I think before hand we had come to terms with many outcomes.  We had shifted our prayers from healing, to God taking the situation into his own hands.  He is the only one in life that knows our path.  We ultimately pray for wisdom and for God to lead us. 

"I will say of the Lord, He is my refuge and fortress: my God; in Him will I trust." (Psalm 91:2)

Monday, November 23, 2009

More Waiting.......

First of all, thanks for all your prayers and support.  Kate and I were told we were going to get the results of our amniocentisis today @ 2:00.  After much emotional build up and prayer we were pushed back another day.  We were told we will now get our results tomorrow by 4:00 pm.  They said things can't be rushed, they have to make sure everything is right. 

Please keep Kate in your prayers.  The emotional build up for today was immense.  The wait for answers is both  draining and heart wrenching.  Today was crushing but,  we will push through it.  Please keep praying for both our family and Olivia Grace as we prepare again for tomorrow. 

"Consider in pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perserverance must finish its work so that you may be mature and complete, not lacking anything."   James 1: 2-4

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Romans 8: 28

Sunday, November 22, 2009

Olivia Grace

I am starting this blog as Kate and I begin a new journey in our lives.  We ask for your prayers as we use this blog as a tool to both keep you updated and hopefully touch the lives of those who may follow on our path.  With your prayers and the Grace of God we will endure.  Here is our story.

As most of you know, Kate is 20 weeks pregnant.  Last Monday we had a sonogram and were joyed to find out we were having a little girl.  We were blessed with a little boy 14 months ago and a girl made everything perfect.  That sonigram did come with some worries.  Kate was diagnosed with having a two vessel ambilical cord.  Most ambilical cords have one vein and two arteries.  Kate's only has one vein and one artery.  Dr. Ricks said this is more common than we think and happens in about 1% of every pregnancy.  20% of two cord babies have midline defects, usually found in the heart or kidneys.  He sent us to Cooks Childerens Hosptial to have a level two sonogram to further check things out.  Kate and I prayed hoping for the best.

Thursday, we went in for our level two sonogram.  The doctor spent a long time looking at everything in much detail.  When finished, he broke the news to us.  We had multiple issues we are dealing with.  First, is a deformity of the hands.  One of her hands has fingers that seem to be overlapping.  Second, She has vsd, ventricular septal defect.  Basically is a hole  seperating two chambers of the heart.  Lastly, she has a dialation of the thrid ventricle which is believed to be causing agenesis of the corpus callosum.  This is a cist that seperates her left and right hemispheres of her brain.  It causes the nerves that connect the two hemispheres to go undeveloped.  Basically, the 2 sides of her brain can't communicate with each other.  She is also a week and half behind in her size and weight.  All of this lead to a diagnosis of a chromosone disorder.  He believed it is Trisomy 18.  We had an amniocentisis to confer. It will take a couple days to get the results.

Trisomy 18 is a chromosone defect where the 18th chromosone has pulled in an extra chromosone upon development.  Our doctor described this as a fatal  diagnosis.  80% of all trisomy 18 cases don't make it to birth.  10% are stillbirth and the other 10% usually live anywhere between a matter of hours to a matter of days.  An occasional case that shows few defects can live a few years, but that is very rare.  We get the results for this and other disorders on Monday evening. 

This brings us to our feeling and prayers.  Kate and I have shed many tears, prayed together constantly, and have talked through every possibility.  Our hearts were broken when we got the news.  No one ever thinks something like this will happen to them.  You feel helpless and constantly question why.  Through your prayers, the support of our families and through the blessing we have with Maddox we will prevail.  We are taking this one step at a time.  We ask for your prayers for our baby girl, Olivia Grace Bryan.  For through the Grace of God we will get through this.