CDH Thoughts

It is hard to believe that Addison has almost been gone for 6 weeks. I keep thinking about what my life would be like if things had turned out differently, and I actually was holding one of God's miracles. I know that everything happens for a reason and that I am special to have been given such a gift. I just wish that I was able to keep it for longer than 22 days. I know that I have never really lost her; she is with me all the time, and I see her in every beautiful flower and every child's laugh. She opened up a world of joy that I never knew was available. I miss her every moment of every day but know that she is in a better place, and one day I will get to hold her for eternity.

I would never change the fact that Addison had CDH. My life has changed for the better because of it. I now know who my true friends are and my family has grown exponentially. I have found out things about myself and Jason that I may have never had a reason to explore. God has shown himself to me in a way that I had never known was possible.

I am not mad or angry at God for taking my little girl back to heaven. I just want to make sure that her memory lives on through my actions and the actions of the other lives that she touched. I want to make sure that I let everyone know about her defect and how it affected my life and is continuing to affect 1 out of every 2500 pregnant women's lives. I want to protect other families from losing children to this defect. It seems like in the last 100 years the doctors would have at least pinpointed what causes this defect or a better treatment regimen to save the lives of these little innocent children. I think that we all need to unify for the one common cause of raising awareness for CDH and raising enough money to really make a difference in research. Every family that has been touched by this defect feels the same pain whether from the loss of a child or the long and ever extending road to wellness for the survivors.

Kaden Alex Kuehl

Kaden lost his battle with CDH on April 20, 2009 after 17 days of fighting. Please keep his family in your prayers. I know what a hard time they both face in the coming days and weeks. I just pray that they will have the support sytem that Jason and I have been blessed with during this journey.

Today

I met with Ashley (Maxton's Mommy) today. She is such a sweet and remarkable person. I am so lucky to have her in my life. I really wish that we had met through a different circumstances, but it just goes to show that God is always at work in our lives.

I want everyone to keep the family from my church in their prayers; they are meeting with the doctors at UCSF all day tomorrow. I hope that they are given better news about their little girl.

I also want everyone to continue to pray for Kaden and his family as well as baby Ava Rose's family. Baby Ava passed away today. Her bog is http://www.caringbridge.org/visit/avarosedaher. Ava's mom is very strong woman and could use some prayers and support right now!

Happy Easter

I wanted to wish everyone a very Happy Easter. My family came into town for the long weekend and have joined Jason and I to the Easter festivities at church.

Yesterday was a hard day for me. It was the month anniversary of Addison's angel day. It is hard to believe that she has been gone for a month. I continue to search for the reason why she was taken from me. I know that God has a plan and that my time with her was a blessing and an immeasurable gift, but I really wish that I had had more time with her or that things had turned out differently. Today after the service, Jason and I went to go and tell our angel "Happy Easter" and to place an Easter Lily at her grave.

I want everyone to continue to pray for baby Kaden. He had a trial run off of ECMO today and needs lots of prayers for healing and for his family to remain strong over the days to come. i also want everyone to pray for the couple at our church whose baby was diagnosed with CDH. They are headed to UCSF tomorrow for another opinion on the severity of defect.

Yesterday

Yesterday, I went to see my friend, Jamie. She has two adorable little boys. I really enjoyed spending time with her and boys. They really cheered me up. Last night Jason and I went to dinner with three other CDH families. Three of our children lost the battle to CDH, but one of the families has a healthy 16 month old. It was really nice to talk with other families who have been through what Jason and I went through. We both left there feeling so much better.

Also, we found out yesterday that family in our church found out two weeks ago that their baby has CDH. Jason and I are having dinner with them tonight to tell them about our journey. Please keep them in your prayers. I know that we have all been in their shoes and know what they are going through right now.

As always, keep Kaden Kuehl and his family in your prayers. He is a strong little boy who is fighting for his life at UCSF. We need his little lungs to reinflate so he can get better. His mom is one of the most amazing women that I have ever met. She is remaining so strong through this journey and even lending a ear and shoulder in support of me. I do not know how she does it.

Missing Addison

Addison would have been 7 weeks old today. I realized the other day that she has been gone longer than she was actually here. It seems so unfair that my little girl had to be one of the babies that did not survive. I keep thinking why did I not deserve a miracle.

The one thing that I can remember always wanting was a child with Jason. I always told him that if he ever gave me the honor of having his child, that I would never ask for anything else. It seems so unfair, that I got this most precious gift to have it taken away 22 days later. I know that Addison is in a better place, but I long for her back all the time. Every time I see a pregnant woman or a mom with her baby, I think about how lucky and blessed they are and wonder do they have any idea what a gift they have been given and are allowed to keep. I realized that the only time I was able to hold Addison was when she was taking her last breaths. I wish that I had had more time with her to hold her and love on her. I still play all the events from her birth to her death over and over again in my mind. Hoping that I will never forget anything about her.

There are times at night when I just watch Jason sleep. I see so much of my Addison in him. At times this is very comforting and other times it makes it hard to look at him because all I can think about is my little angel. Jason is an amazing man, and I just think of all the other things that she may have gotten from her daddy and it breaks my heart that I will never know.

I hope that one day Jason and I will be blessed with another child, and I will have another one of God's little miracles to hold in my arms. I think that moment will be a little bittersweet since I was supposed to get to hold my Addison and take her home. I know that another child will never make this pain go away, but it will allow me to give all this love to a child as well as allow me to tell all about its big sister who fought so hard and was so precious that God could not let her go. I know Addison will always be part of our family and will never be forgotten no matter where life leads Jason and I. We have forever been changed by her being in our lives. I now look at the world in a different light that I had before and I continue to wonder how God will use this new found clarity to help others.

Also, please pray for Kaden Kuehl is at UCSF on ECMO. His little lungs are collapsed and need to reinflate for him to get better. I really want him to be one of the miracles!

Home Alone

Today is Jason's first day back at work and my first day to be alone since we lost Addison. It is much harder being home alone than I had anticipated. The house feels so empty since I had expected/hoped to come home with a newborn baby. I had really gotten used to the idea of having my little Addison with me always.

I pumped for three weeks while Addison was here, and it has been 3 weeks since she grew her angel wings, and I still wake up every 3-4 hours that is if I am sleeping at all. I had all of her things shipped back from California and put them away in her room. As hard as it is to have her room in the house, there are times when it is very comforting to go in it. I do not know if I will ever be ready to disassemble her room and pack up her things.

Kaden Kuehl

I want everyone to keep Kristi, Craig, and Kaden in their thoughts and prayers today. Kaden was deliverd early this morning and is just beginning his long fight with CDH. I know first hand that he is in great hands with the staff at UCSF.