CDH Awareness Day

Please remember that today is CDH awareness day and to wear turquoise. Addison would have been 6 weeks old today which is hard, but I know that she has touched so many lives and that the doctors at UCSF learned something new about the treatment of CDH through her, so they can help save another CDH baby.

I want to thank everyone for the payers, kind words, and food. Our church, and specifically our Sunday school class, has been our rock through this hard time. I cannot put into words the gratitude that Jason and I have for having such wonderful and caring people in our lives. My hope for everyone is that they are able to experience this type of unconditional love and support.

What do You Say

I was reading Ashley's post and made think about what do you tell people when they ask if you have any kids or for me lately, when are you due, or how is the baby. I know that I have learned through this experience that you should never ask anyone any of these questions unless you are prepared for the real answer.

I have had multiple people ask me when is the baby due, and I have to explain that I am not pregnant anymore and that my baby passed away after 22 days of life. There is always this very awkward silence and you can tell that they want to run, or they tell me that they are sorry, but I am still young and can always have another child. It is obvious that these people have never lost anyone important to them. It is not like I can just go and replace an important someone who has passed away. I do not understand why that seems like an appropriate response.... You would never tell someone who has lost a parent or spouse to go and get another one. I can never have another Addison; she was a very special person and her life can never be repeated, and the place in my heart for her can never be be filled by another child.

I hope that one day when God thinks that Jason and I are ready that he does bless us with another child but it would not be to replace our love for Addison but instead to supplement it. I know that when this happens, I will be a better parent because if it. I will never take any relationship for granted because all you know for sure in this life is that you have today; therefore you should live each day and nurture each relationship as if tomorrow may never come!

Chosen Ones

I found the story below, and it made me feel better about the situation. I thought that it may help other parents of CDH angels.

THE CHOSEN ONES

I had a dream the other night. It came to me so clear. I stood before the throne of God, afraid to come too near. God said to me, "I hear your prayers. There are answers you can't find. I brought you here to talk to me and help to ease your mind. "I said,"Well, yes, God, I am upset...About my special one. This punishment is awfully harsh...Whatever have I done?" God looked at me and shook his head, He said, "My Dear, you've got it wrong. I sent this special child to you because you are so strong. I searched and searched to try and find someone with a love so rare. Parents so unselfish they could give her that special care. I try to save my special gifts,like those you're speaking of, for a special kind of parents I call the 'Chosen Ones. 'Of all the ones to choose from, I know I've got it done...Parents who deserve my best, an honor you have won." -

Unknown

Thoughts

It is hard to believe that Addison would have been 5 weeks old today, but instead she will have been gone for two weeks tomorrow. I feel completely lost without her. I had prepared since last July to be a mom, and now I have the battle wounds of pregnancy with no child to hold.

I know that there is a reason for God only lending Addison to us for such a short time, but it does not make any of this any easier. It is hard to imagine that someone can change you for the better in just 22 days. I am now trying to figure out who I am and what life will be like after Addison. I keep searching for the answer to why so that I can act on it.

One thing I know is that I have been very blessed in my life with a loving family, friends, and church. It is one of those things that you get so wrapped up in your everyday life that you forget to enjoy them all and take it for granted and it takes something like this to make you slow down and realize that you are loved and very blessed.

Arrangements

We have made the arrangements for Addison's service. We are having visitation and her funeral on March 17, 2009. The visitation is from 9:30 am - 11:00 am at the Roswell Funeral Home (950 Mansell Road, Roswell, GA 30076) with the service to follow in the chapel at 11:00 am.

We invite anyone who would like to honor the memory of our precious Addison to attend. For anyone who wants to do something, please make donations in lieu of flowers to one of the following charities in her memory:

Parker Reese Foundation
P. O. Box 2199
Elizabethtown, NC 28337
Jessica Singletary at (888) PRF-CDH0

Family House
1234 10th Ave
San Francisco, CA 94122
Kent Smith at (415)476-0160

Breath of Hope, Inc.
PO Box 6627
Charlottesville, VA 22906
Elizabeth Doyle-Propst at (888) 264-2340

Thoughts

I woke up this morning hoping that yesterday had been a bad dream and Addison would still be here. I think that the reality that she is gone is starting to sink in. I wish that I could change all of this and have my little princess back with me, but that is not an option. I instead have to make sure that this journey with her is not ever forgotten. I know that I will not ever forget her or the lessons that she taught me. It is strange that an infant can be so wise and strong beyond its years. I think that Addison was one of God's precious angels loaned to Jason and I for a short time to make a difference in our lives and the lives of others that she touched. I know that I am thankful to have had 22 days with her and cannot even put into words how she has changed me and made me a better person.

I also wanted to mention. We met a family at the Family House whose 9 year old son has relapsed and is fighting terminal cancer. They gave him 3 - 6 months to live. Please keep Dylan and his family in your prayers.

Angel Wings

Addison lost her fight with CDH today. At noon, she was disconnected from ECMO and put into my arms where she peacefully went to heaven. Before she passed, Jason and I got to hold her and tell her how much we love her.

We want to thank all the doctors (escpecially Dr. Keller and Dr. Roberts) and nurses (Christa, Anna, Sue , Stephanie) at UCSF for giving her every chance.

We are making arrangements to have Addison brought back home, so we can have a service for her. We will update once the arrangements are made.

Thank you for all your kind words and prayers.

Still on ECMO

Addison ended up retaining more fluid over the weekend, so the doctor's suggested that we give her a few more days on ECMO to get the fluid off so she would be strong enough to be weaned off ECMO. Please pray that the tricks that the doctors are trying will work for her.

Thanks

We have been receiving so many cards and words of encouragement from all of our friends, family and even complete strangers. I want everyone of you to know how much it means to Jason and I.

It seems that the cards and packages are always timed when we need them the most. I guess that is God at work. Yesterday, we received a package from our Sunday School class full of cards and gifts for Addison. It was like receiving a big hug from all of them as well as a little piece of home.

Still on ECMO

We were told that because her decannulation procedure may be more difficult due to the placement they will be moving her to the OR for the procedure as a precaution which will require her to be hand bagged during the transport. With this in mind, Dr. K did the trial off ECMO with only hand bagging and the traditional vent support.

Addsion did pretty well on Thursday with the practice wean. They completely clamped off the circuit and her stats dipped but she recovered to oxygen levels in the low 90's to mid 80's on the Traditional Vent (Oxygen in the 60s), but her heart rate and blood pressure were not as stable. Dr. K told us to give her another day and they would tray again. Yesterday, her oxygen levels were not as good (in the mid to low 80's) at the same support but her blood pressure and heart rate were perfect.

Dr. K told us that she has a lot of fluid on her due to the ECMO and they were going to try to get the fluid off over the weekend by upping her dose of Lasic and would try again on Monday. They upped the dose and Addison began peeing like crazy and maintained the rate throughout the day, so we are hoping the chest X-ray will show less fluid build up today!

Update

They are going to try a trial run off of ECMO today. Depending on how she does, they will remove the cannulas tomorrow or over the weekend. We are keeping our fingers crossed that she does well. Please keep her in your prayers today.

Update

Addison is holding steady on ECMO. The plan right now is begin to wean her off EMCO tomorrow and see how she does. If all goes well, they are going to schedule the repair surgery for Friday. Addison is actually opening her eyes some. She has the most beautiful blue eyes I have ever seen.

Yesterday, Liz and Kristi came to see us. It was nice to see them both. They brought Addison some adorable gifts. She absolutely loved them and cannot wait to wear them all. We are so lucky to have such a great support from our CDH friends.

ECMO

Addison has had a rough few days. After holding steady for what they call the "Honeymoon Period" her stats dropped and they were not able to stabilize her on the oscillating vent. They tried giving her Flolan to treat the pulmonary hypertension and it worked for about a day and then her stats were back down. On February 27, 2009 at 8:30 pm, she went on ECMO (Heart and Lung Machine) to give her little body a rest. They told us that she will be on ECMO for 5 - 7 days best case scenario and no more than 14 at worst case scenario. They are planning on doing the surgery to repair the hernia once she is off ECMO and stable.

Jason and I also had her baptized on the February 27, 2009 prior to her having the surgery to go on ECMO. She is being a trooper and hanging in there. Right now, we are just praying that the rest will give her time to build up strength to fight when she comes off ECMO.

One thing that is a positive is that they have reduced her paralytic so she can move a little bit. She is able to grip your finger when you hold her hand and talk to her. I am so proud of how hard she is fighting. She has taught me in the last 11 days what true strength and faith is all about.