One Year Ago

It is hard to believe that it has been a year since Lilly completed her mission here on Earth. It was a year ago today that Josh and I held our sweet baby during the final moments of her life. It has been the hardest trial we have ever experienced. We have experienced many tender mercies over the past year. These moments come at a time when we need to feel our Heavenly Father’s love the most. We have both experienced special dreams of Lilly. We take these precious tender mercies and treasure them. My favorite dream was of me holding Lilly against my chest and she was smiling and giggling. I can hardly wait for the day when this dream will come true. We have been blessed with amazing family and friends that have supported us throughout the year. We feel so blessed to have them apart of our lives.

We celebrated Lilly’s birthday 1^st birthday in August. It was a day of bittersweet memories. We laughed how Lilly entered the world screaming. How Josh and I cried because she was alive and breathing on her own. My girlfriends and I released balloons at the time she was born. They were our way of sending hugs and kisses to her in heaven. Later in the evening our family gathered with us at Lilly’s grave. We sang Happy Birthday and Summer and Bryson blew her candle out. We ate Great-Grandma’s Hot Water Chocolate cake and sweated our guts out. Lilly was always dressed for every occasion and a princess crown seemed the most fitting for her on her birthday. We placed the crown in her flowers and had to laugh. It was sooo Lilly.

We thank Heavenly Father everyday that he gave us twelve beautiful weeks to be with our baby. We had begged Heavenly Father to please allow us to hold our baby alive for an instance. We had been told we may only get a small moment in time with her but Heavenly Father granted us twelve beautiful weeks. We will treasure every memory we have of that time we had with Lilly.

We are so grateful to everyone. Everyone has been so supportive, loving, generous, kind, and wonderful to our family. Thank you for everything that has been done to help our family get through this past year.

We have a Lilly & Nathaniel & Reese Team. We race again in Ethan’s Run 2012. It’s a great family event that raises money for Scott & Laura Eller Congenital Heart Clinic. If you would like to join our team please feel free to contact Kim.

We have kept the blog up so people could remember our sweet baby. We understand that her blog has touched people across the world. Lilly had a special mission here on earth. We are grateful that we were able to be her earthly parents.

We love you baby Lilly. You are an amazing little girl.

Ethan's Run

It has been three months since we lost Lilly. Although we have returned to a somewhat normal life we definitely feel heart ache everyday for our sweet baby. Summer and Bryson had a wonderful Christmas. Thank you to all who generously and anonymously dropped gifts at our home. The kids loved everything. Josh and I feel so blessed to have sweet friends who help during a time of need. Josh and I continue to struggle but that is to be expected. Our hearts ache for our baby but we are at peace that she is no longer struggling and finally is free.

On Saturday morning a group of us will be walking in Ethan’s Run in honor of Lilly and Nathaniel’s memory. (Nathaniel is my friend’s grandson who also died of Congenital Heart Disease). Ethan’s Run benefits the Scott and Laura Eller Congenital Heart Center at St. Joseph’s Hospital. If you would like information about this precious event or like to make a donation to help families who are walking down a path that Josh and I have walked please visit http://www.ethansrunaz.com. We are excited to participate in something so dear to our hearts.

Thank you again for your love and support.

Two Weeks Later

It’s the early morning hours of Thanksgiving Day and my heart is full as I reflect on this past year. I have so much to be thankful for. I am so thankful for my family, friends, and the opportunity I had to be Lilly’s mother. I am so thankful for the outpouring of love and support that we have received during this difficult time. We feel so blessed to have such an amazing support team. We are so grateful for the generous donations that have been made to help ease the financial burden we are facing. Thank you to everyone that was able to come to the funeral. We appreciate your willingness to come and support us. Thank you again for your love and support. We feel so blessed.

It has been a little over two weeks since we lost Lilly. The pain is sometimes unbearable but with heavenly father’s gentle loving arms around us, we are able to continue forward in our lives. Taking everything one step at a time. This thanksgiving we are giving thanks for the twelve wonderful weeks we had with Lilly. We have been asked was it worth it? Yes she was worth it and we feel so blessed to have had that amount of time with her. She taught our family so much in just that short amount of time. The lessons she taught us we will carry with us for the rest of our lives.

How are Summer and Bryson? Summer returned to school the Monday after the funeral. She seems be her normal bubbly self. Her teacher and the social worker at school are keeping close tabs on her. They say she seems to be handling everything wonderfully. This is a huge relief to Josh and I. Bryson is well BRYSON. He continues to just play with his trains and loves to tease his sister. Every now and then he will tell us that Lilly not at hospital but with Jesus then he will continue to play. He is very excited for his birthday.

Josh and I continue to struggle. We have good days and bad days. We both miss her so much. Our lives have changed dramatically. We went from running a hundred miles an hour to having a lot of time on our hands. We are both adjusting and using the opportunity to do special things with the kids and also being able to become closer as a couple. We both have returned to work and are grateful for that distraction.

We hope you have a wonderful Thanksgiving. Please know that we are so grateful for everything that everyone has done for our family. Please continue to pray for our family. Happy Thanksgiving.

Funeral Services

Please joins us as we remember Baby Lilly

Friday November 12, 2010

The Church of Jesus Christ of Latter-day Saints

1100 N Cooper Rd
GILBERT, AZ 85233

Visitation 9:45-10:30am

Funeral services 11:00am

Graveside Services: immediately following funeral service

At

Mariposa Gardens

400 South Power Road

Mesa, AZ 85206

Sweet Lilly

Lilly Grace Jones returned to her Heavenly Father on November 8, 2010. Lilly was wrapped in her parents loving arms as she completed the final moments of her mission. Lilly’s room was filled with grandparents, uncle, and priesthood authority during those precious moments. At this time Josh and I are filled with peace as Heavenly Father has wrapped his loving arms around us filling us with the knowledge that Lilly is finally at peace. We have been so blessed to be her parents her on earth for this short time. We look forward to the day when we will be reunited with Lilly. As details come together of Lilly’s funeral we will post them. We hope you will join us as we celebrate the life of Sweet Baby Lilly.

Many of you are wondering what has been happening with Lilly over the past several weeks. We are sorry that it has been awhile since we have posted but as you read further you will see we were going through a major struggle with Lilly.

The Neurologist have said that they do not know if Lilly is going to have a quality of life. The MRI scans of her brain look normal (except for the cerebellum) and they said that she could possibly have a quality of life except that they can’t tell what these De Sats are doing to her brain. When she holds her breath they can’t see what that is doing internally to her brain. So the Neurologist unit said “She could possibly have a normal quality of life and she could possibly not we don't know."

The Cardiac Unit is saying they don’t think Lilly is going to have any quality of life. They are saying she will be facing multiple surgeries and they aren’t sure if she will be able to make it through all of them. The Cardiologist Surgeon is willing to do the open heart surgery but is very hesitant. If we decide to go ahead and do the surgery Lilly will have multiple open hearts surgeries within her first year of life. They will need to replace her Mitral Valve with a mechanical valve(this will be done several times as she grows), they are going to replace her Aortic Valve with her Pulmonary Valve, they will need to put a machanical valve in place of her Pulmonary Valve, and lastly they will need to fix her Coarch of the Aorta. Again these are very major procedures that our little Lilly is facing. This is a huge decision that Kim and I are going to have to make whether to continue to put Lilly through these surgeries or as the Cardiac Unit has said we let Lilly rest and return to our Heavenly Father. We are stuck between a rock and a hard place on these decisions. We feel at times Father has said its time for Lilly to come home and other times we feel that he is trying to teach us that if we have faith in him he will continue to show us miracles with our little Lilly.

We were able this past Halloween to have one of our dear friends the Washburn family come over and take some wonderful family pictures. Here are a few of them. We hope you all love them as much as we do. We were able to put Lilly in a dress for the first time and she behaved very well throughout the photo session. We again want to thank you all for following this Blog and all of the love and support that each and everyone of you has given us. We know there are many of you out there that are praying for Lilly and our family, more so than we could ever imagine and thank you! Please pray that Kim and I will be blessed with wisdom on the decisions we are facing. Lilly is in liver failure so time is of the essence. Thank you again!

Jones Family

It has been a extremely long and stressful week for our family. On Thursday afternoon we sat down with the doctors and had a very long and emotional meeting. We sat and listened as the doctor explained that Lilly’s heart would need a very complex open heart surgery. The doctors feel that this procedure and the recovery process may be too much for Lilly to handle. They have ordered a neurologist to look at a MRI scan of Lilly’s brain to determine if Lilly will have any quality of life. After the results come back from the MRI we will once again sit down and talk to the doctors about what would be best for Lilly. Please PRAY for us that we will make the best choice for Lilly and our family.