Wednesday, March 24, 2010

Better To have and lost, than not have had at all

Here's a note from my brother as we had to say goodbye to my niece just 20 days after she was born. She's with Jesus now, but missed by her Uncle J a ton already. She held a special place in all of our hearts before she was even born and will always.

Rori Christianne Keller
As many of you may recall, at the birth of our daughter Michela, she introduced herself to the world via an e-mail message. My intention was to have her introduce her sister to the world in this e-mail. Unfortunately, this announcement doesn't carry the same joy and excitement.

This morning, March 22, at 12:30am, Rori Christianne peacefully passed away in her sleep. Since many did not get a chance to share in the life of Rori, I want to give you an opportunity to share a piece of the joy and journey we experienced.

Our story really began on January 26. Our doctor had some concerns that Rori was underweight. We had a few procedures done to find out what might be causing the problem and Rori was diagnosed with Trisomy 18. This is chromosomal defect where there is the presence of 3 copies of chromosome 18 instead of 2 in each cell. Although this is a very common chromosomal defect, most babies miscarry in the 1st or 2nd trimester and the children that deliver unfortunately have a very low survival rate past the age of 1. Upon this diagnosis, the doctors gave us the option and encouraged us to have her delivered right away if we wanted to see her alive and maybe in their mind since there wasn't a medical reason that she would live. Despite that report, our choice was clear, we would give Rori a chance at life and let her go full-term and if we were so blessed to have a miracle, then she would need our strength, faith and love.

On March 2, at 7:42am, Rori Christianne graced us with her beautiful cry. She was a lean 4 pounds 8 ounces and 17.25 inches long, we had been blessed with the gift of life. She had amazingly gained over a 1.5 pounds in the last 5 weeks by us choosing to have her go full-term and getting her to a healthier weight. There were certainly a few moments early on that were scary as parents, but Rori continued to fight and show her heart of a champion. We were so blessed to bring her home with us on March 7. She needed the aid of a little bit of oxygen and still had a feeding tube in her nose, but she was with us.

Over the following 2 weeks we certainly had our challenges as parents, balancing an active 16 month old Michela, sleep deprivation and noisy oxygen machines, but thru it all Rori continued to show improvement. She gained 11 ounces in the first 8 days of being home and we had increased her feedings by 20%, something the doctors didn't expect for a month. Needless to say, we as well as our doctors and nurses were very encouraged by her progress and surprised by this the events of today.

Early this morning, March 22, at 12:30am as we woke to give her a feeding, we found that she had peacefully died in her sleep. We had known that this was a possibility and common way of death for Trisomy 18 babies, but we never thought about it or lived in fear of it happening.

Words cannot express the hurt of this loss of our daughter, but in the 20 days that Rori brought joy to our lives, we learned so much. Behind the oxygen and feeding tubes was an absolutely beautiful baby. Her perfect little nose and lips were noticeably attractive and of great resemblance to her sister Michela. But the lessons that Rori taught us will never leave us.
First of all, we learned to take life one day at a time. Making plans for the future is okay, but love, cherish and live each day for what it is, the good, the challenges and opportunities. Tomorrow, if we are blessed with it, will have its own time, but live out today.
Secondly, you never know what someone is going thru in their life. If someone doesn't greet you with a smile, is seemingly distracted or just isn't driving fast enough ahead of you, do we know what a day is like in their shoes. Most of you did not know what a day was like for us and by our choice, this was a journey that we were on and we took each day one at a time.

We would never wish what we went thru on anyone but we do feel great compassion for any that have lost a child, it is a loss and pain that I never imagined possible. But we say beyond a shadow of a doubt, "we would rather have had and lost, then never had at all." The 20 days with Rori are never going to be enough, but she is always loved and never forgotten.

We want to thank the family members and friends that have tirelessly stood by our side in faith, in love and in presence. We are forever grateful for the compassion that you showed us.

We would like to invite you to a memorial service for Rori Christianne that will be held on Thursday, March 25 at 11am. Service will be at Geo.H. Lewis & Sons Funeral Home at 1010 Bering Drive, Houston, TX 77057.

We Miss you Rori!!

Andrew & Danielle

PS: Pics are Rori at 8 days and Michela (I love to do laundry) at 16 months
Rori Christianne (8 days old)
Michela Kay (16 months old)