I have set up a new blog to keep everyone updated on our daily lives. I will continue to update this blog with CDH related information. If you would like to keep up with us, please visit the following http://acordfamilyhappenings.blogspot.com/.
It was one year ago today that Addison was diagnosed with CDH during our 19 week ultrasound. I remember that day like it was moments ago. At that time, I had no idea what God had instore for me. I have never been so afraid and panicked at the same time. I can honestly tell you that the last year has not brought me the things that I hoped and prayed for that day and the many days that followed, but I guess God had other plans for me. Through CDH and my daughter, I have found the following:
1. Who I really am and who I want to be 2. Many of my best friends 3. What true strength looks like 4. That God's love cannot be measured and is always with you no matter how bad it gets 5. God has plans for our lives that we cannot even imagine; we just have to open our hearts and minds to his plans and our lives will be better than ever imagined. 6. Being a mom is the greatest feeling in the world and a daughter's love is indescribable.
Many thanks to all of you who have lended your hearts, souls and kind words to me during the last year. I can never tell you how much it has all meant to Jason and I. It is sad that many time you have to go through a tragedy that you truly see God's love.
Needing a vacation? Head over to The Parker Reese Foundation fundraiser website to purchase a $20 raffle ticket for your chance to win a set of coach travel certificates valid for travel in the continental U.S. on AirTran Airways for two passengers. If you are interested or have any questions please feel free to contact firstname.lastname@example.org.
The Parker Reese Foundation has partnered with Good Search to raise funds for CDH. I would really appreciate you downloading the Good Search toolbar from http://www.goodsearch.com and entering The Parker Reese Foundation as your preferred charity. Each time you use this search engine or the shop using Good Shop, a donation will be made to The Parker Reese Foundation.
I am so honored to be a part of The Parker Reese Foundation. We have so many exciting fundraisers planned over the next few months. I wanted everyone to be aware of what is happening so yo can get involved if you are so inclined. Here is a listing of the events that we have planned:
Change CDH August 1, 2009 - October 31, 2009 Charlie Daniels Fiddle Raffle Drawing on December 1, 2009 2009 Round for Hope (Texas)October 2, 2009 CDH Uncorked (Georgia)November 14, 2009 Addison's Angel Run (Georgia)February 2010 Maxton's March (Kentucky)March 2010 Heals for Hope (North Carolina)March 2010
Change CDH is a fundraiser to benefit Parker Reese Foundation. PRF is a non profit organization based out of North Carolina that provides a home to CDH families delivering at Duke and UNC. they also provided us with tons of support during Addison's life and after her death. They sent a beautiful arrangement to her funeral which let me know that I was not alone in this journey and that people cared. I am so lucky and honored to be part of this foundation.
Change CDH involves collecting your loose change to help PRF! Simply put, I would like everyone to collect their change until October 31st and take the change to the bank and then write PRF a check for that amount. Pretty simple. If you would like to get others involved you can put a jar on your desk at work or anywhere for that matter. $16 sponsors one family per night, so change can definitely make a difference! Thanks to those who are willing to participate. Please help us CHANGE CDH!!!!
It has been a while since I posted. It is hard to believe that Addison would have been 6 months old already. It seems like just yesterday she arrived into this world. Jason and I are doing really well all things considered. We have been keeping busy with the house, The Parker Reese Foundation and weekend get aways!
I am so glad that I have my CDH family! I really do not know if I would have been able to get where I am today with out all of your support. I just want to make sure that I give that same support to the other families that have or will face the same situation that I have lived through.
Jason and I have been cleared to start trying again, but I do not know if we are ready for that huge step. I just know that I will be a nervous wreck the entire time and I am not sure that I can deal with the disappointment of not getting pregnant immediately. We were so blessed just to get pregnant with Addison before we really began trying!
I just want to remind everyone to keep Ireland in your prayers. She is making her entrance into the world today!
I made these CDH crosses after Addison passed for CDH babies to hang in the isolets as they fight their battle and for parent's of CDH angels and survivors to hang on the Christmas tree either in remembrance of their angels or in celebration of their gift. Making these crosses is very therapeutic for me. It gives me an opportunity to honor my baby girl!
I have made another batch of the crosses and wanted to know if there is anyone who would like one for their CDH baby. If you would like one, please email me (email@example.com) the following:
I finally took a picture of Addison's headstone. I am really pleased with how it turned out.
It is hard to believe that my little angel has been gone for over 4 months. Last Friday was her 5 month birthday! Jason and I went to see her and let her know how much we love her and miss her. I took some purple bearded irises to her grave site. This flower was planted at my grandmother's house when I was growing up so it makes me think of her and now my little angel. I know that my grandmother is in heaven doting over little Addison.
Also, I made a run at making some onsies for my friend that is preggo. It really did not turn out the way I had expected/hoped so our dog Bailey now has a new outfit. Here are few pictures of him modeling his new outfit.
I mailed 100 letters yesterday. While I was at the Post Office, the clerk asked me what I was mailing and commented on how the color really stood out. I told her about my precious Addison and all the other CDH babies. She was astonished that she had never heard of such a terrible defect. The letters are doing their job. Add one more person to the pool of individuals that are educated about CDH. I really hope that we get some one's attention so we will be able to bring attention to this defect.
Also, for anyone who purchased a Parker Reese t-shirt from me, I put them in the mail yesterday. I would assume that they should arrive by the end of this week or early next week.
I want everyone to remember Avery Mae's family as they begin the difficult journey of saying good bye and grieving their precious baby. We know that Avery was greeted by the many CDH angels that are already in Heaven.
It is hard to believe that Addison has been gone for 4 months. Some days it feels like a lifetime ago that I said good bye to my baby girl and other days it seems like it was just moments ago. I thank God for lending her to Jason and me. She made us better people and made us realize what is really important in this life. She was wise beyond her days. I love her so much and know that she fulfilled her purpose in this world and she was lucky enough to never have to endure the pain and suffering of this world. She entered and left this world completely innocent and perfect.
I have been really busy lately. I have been traveling for work, going on vacation with my family at the beach and then going to Raleigh to see Jessica and Parker's House. I had such a great time in Raleigh with Jessica.
Also, I finally got Addison's picture back from To Write Their Names in The Sand. It is so beautiful and I know that she is smiling down from heaven.
I want everyone to continue to pray for all the CDH babies that are fighting or are preparing to fight this defect.
This weekend was really hard for Jason and I. We conceived Addison a year ago yesterday and today is Father's Day! I am really proud to call Jason my husband and I fell in love with all over again when I saw how he looked at our little girl. He is the best daddy any little girl could have wished for. I just hope that God will bless us with another one of his miracles and allow us to keep him or her for a while. I want to see that look in my husbands eyes again. I guess it is the unconditional love of a father that I saw when he looked at Addison.
Today, we spent the day together doing whatever he wanted. First we went to the gym for a good long workout and lunch and then headed to Harry's for dinner ingredients. We then decided to go to the movies to see the "The Hangover". It was really good to laugh that much. Tonight we are cooking dinner at home: Steak, crab cakes, shrimp and corn! We are also opening a bottle of wine from the cellar: Oracle. A very special wine for a very special occasion!
I want to wish all father's a Happy Father's Day! I know how much my father means to me and how grateful I am to be his daughter.
The world finds me well lately. I have been having more good days than bad. I really miss my little angel but know that I am becoming the person that she would be proud of and that God wants me to be. I have been really busy lately with work and with my favorite Job - The Parker Reese Foundation. I am so glad that God brought Jessica and this amazing foundation into my life.
I equate CDH Awareness to ants. One ant cannot move the large piece of food to the ant hill, but if all the ants all work together there is not anything that they cannot move. We need to bind together as a team and fight this for our Heavenly and Earthly CDH angels. The only people that can make a difference are the ones of that we are chosen by God to have the precious angels in our lives whether it is for a lifetime or just a fleeting moment. Everyone of us has a story to tell. Use it not for sympathy but to anger the rest of the world and light the fire that will fuel people to become active for this cause.
I want to remind you to keep all the CDH babies and families in your prayers. There are many that are in the thick of the fight, about to begin their fight, or are fighting the daily battles of CDH survival that could use the added support.
CAPTURE THE MEANINGFUL MOMENTS IN LIFE WITH THE PARKER REESE FOUNDATION
FAMILY PHOTOGRAPH FUNDRAISER
The Parker Reese Foundation has partnered with JN Hoffman Photography to provide this exciting photography event. JN Hoffman Photography has offered their services at no charge to help raise funds for The Parker Reese Foundation! You may view samples of their work at their website: http://www.jnhoffmanphotography.com/.
Details: We are selling a photography package with JN Hoffman Photography for $65.00 and $3.00 raffle tickets for a chance to win a Canvas Wrapped print of the pose of your choice from your session.
The terms of the package are listed below:
1 hour photography session at the studio of JN Hoffman Photography (maximum of two poses and three persons) including the processing of the following: 1 (8x10), 1 (5x7), 4 (4x6)
No substitutions on the package prints but additional prints available for sale by contacting JN Hoffman Photographers. The session must be booked prior to August 14, 2009 with a session date prior to September 1, 2009.
Today is the three month anniversary of Addison's birth. Her birthday was one of the most exciting and joyous days of my life. My little girl opened my eyes to another world, and I thank God for lending her to us everyday. Even though her life on this earth was very short, part of her still lives in Jason and I. I can honestly tell you that during the last three months opportunities have appeared to us that I did not think possible as well as the growth of our family through people who were perfect strangers just a mere few months ago.
I have decided to make my goal to celebrate each passing birthday with all the good that I was able to experience through Addison. I know that I will never stop missing her, but I want her presence in my heart not ache but to give me comfort and a drive to be the better person that she would have been.
The only thing that I have to say is: "Thank you God for giving me the post precious gift in the world and take good care of my baby girl!" I know that one day I will get to hold her again and that time it will be for eternity!
Addison....Know mommy and daddy love you very much and miss you terribly, but be a good girl in Heaven, and we will be there to see you one day, but in the mean time, you keep looking over both of us and continue to send your love and wisdom our way! We really need you at times!
It has been a while since I posted and wanted to give everyone and update. Jason and I are doing pretty good. I have decided to run/walk a half marathon on October 31st and started training this week. I had no idea how out of shape I am, but you have to start somewhere. I am going to do the Susan G. Kolmen 5K this weekend in honor of my friend Tracy's mom.
Jason has decided to pursue his passion of photography (www.acordphoto.com). Addison inspired him in 22 days to do something that I have told him to pursue for years.
I am also keeping myself busy planning fundraisers for The Parker Reese Foundation in Atlanta. I am working on a picture party (Thanks to the Hoffmans), a wine tasting (CDH Uncorked), and a Fun Run in memory of Addison. I hope to have the picture event this summer and the run in February or March of 2010, and the wine tasting is planned for November 14, 2009. I have also sent the CDh Day of Prayer information to my church, RUMC, and to many churches in my hometown (Thanks to my mom). I have never found anything that I am so passionate about as helping other CDH families and Parker Reese is an amazing foundation and I thank God everyday that Jes is letting me help out.
I miss my little angel everyday, but know that God is using this to inspire me to make a difference. My baby girl touched more lives in 22 days than some people do in a lifetime and I know she is the reason that I have been lead down this path and she will touch lives every time I raise awareness or money for CDH. I had bracelets made in her memory and have been handing them out and telling her story. I just hope that everyone who receives the braclets tells at least one person about CDH and that person tells one person and so on. I hope one day in the near future that everyone will be aware of CDH and will have the drive to eliminate or contain this birth defect.
I also want to wish all CDH moms a very Happy Mother's Day! If you are blessed with a survivor, hold on to them tight this weekend, and if your little one is an angel, know that they are all looking down upon us and sending love through the small everyday miracles. We just need to stop long enough to see the beauty that is around us and see our angel's faces in the rainbows, flowers, etc. They have never left us; they are here in our hearts and in all the wonderful things that Gods has to offer in the world.
I am working with the Parker Reese Foundation to raise money for CDH. We are currently selling t-shirts. Imagine caring for an entire family by simply buying and wearing a t-shirt. That’s what “Sponsor a Night” is all about. Purchase your $16 t-shirt today and wear it to show your support for the families staying at Parker’s House. Each $16 purchase sponsors one night with a family that calls the House, “home.”
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 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.
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!
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, 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 KadenKuehl 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.
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!
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.
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.
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.
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!
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." -
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.
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
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.
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.
Addison ended up retaining more fluid over the weekend, so the doctor'ssuggested 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.
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.
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!
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.
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.
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.
Addison is holding steady as they wean her oxygen and oscillator to prepare for surgery. We were told that the surgery is scheduled for this Thursday if everything remains the same.
I was able to help change her diaper, take her temperature and hold her hand yesterday. It is so amazing getting to touch her. I can honestly say that I have never been so excited to change a dirty diaper. I guess that I will never take even the smallest thing for granted with her.
Also, I completely forgot to mention that Jason and i have moved intothe Family House (1234 10th Street, San Francisco, CA 94122) and will be here until Addison is released. This is the most amazing place. We are so happy to have somewhere to call home!
It seems like the days and night have just run together. Jason and I have been spending so much time with her and fall in love more everyday!
Addison had a good day yesterday which means that I do not have a lot to say other than she is holding steady while they slowly wean her oxygen and oscillator. She amazes me at how someone so small can be such a fighter with a strong heart.
She has gotten really swollen since birth, so they gave her Lasic to help with the fluid retention. I am hoping today we can get pictures of her where she does not look so puffy.
We actually got a few pictures of her yesterday. I can really see Jason in her. She is like a little mini-daddy. I guess it is a good thing that my husband is handsome.
Also, I wanted to thank our church , RUMC, for the beautiful prayer quilt. I cannot wait until I can wrap Addison in all of your love and prayers.
Addison is doing pretty well. for the past few days, she is holding steady. At times, they are able to wean hr oxygen down to the 70's and the oscillating vent down to 28, but then she will have an episode and end up back where we started. I feel like it is three steps forward and then four steps back. I know that it is just part of the roller coaster and I am thankful for any and every bit of movement in the right direction. We just really want to get her dependency on the machines weaned a little bit since when she has some of her episodes, they have to use all the support available with the oscillating vent to get her stabilized and if she were not to respond, the next step is ECMO.
They say that she is not stable enough for surgery right now since even changing her diaper can put her into an episode and cause her stats to drop.
I actually got to hold her hand last night. She had a really good day and her stats had been stable for a while, so they told me that it was OK to touch her. When I held her hand, I swear my heart grew three times bigger. She is so strong and has been through so much and I love her so much for that.
Today has been pretty uneventful. Her oxygen saturation has remained in the 90's and her CO2 has remained between 40-60%. Her stats still drop when they suction her and change her diaper, but not dropping as far or remaining low for long. They have been able to wean her oxygen to 75% and the oscillating vent down with her stats remaining strong.
One time when Jason and I were visiting Addison, she opened her eyes for one second. She has the most beautiful blue eyes.
Addison was pretty unstable yesterday. They performed a chest X-ray, suctioned her, and gave her a breathing treatment and her stats dropped dramatically. She was completely unresponsive to the oscillating vent and oxygen for about two hours. We were given the talk about ECMO and the doctors were in the process of completing the paperwork and preparing the team to put her on ECMO when she just recovered on her own. They told us that if her oxygen saturation stayed higher than 85% through the night that we would avoid ECMO for now.
Jason and I prayed a lot and God answered our prayers.... Her stats went up to the mid to high 90s and remained there all through out the night, so Addison fought off ECMO for now!!!
Jason and I went to go and see Addison this afternoon and decorate her home. We took pictures of Mommy, Daddy, and her brothers (Bear and Bailey) as well as Ali the alligator to keep her company when we were not there. We were also able to snap a few pictures.
I noticed a leak in my AF on Monday, February 16th ao we went to UCSF and they induced that afternoon at 4:00 pm. Addison finally arrived via c-section at 10:45 pm on February 17th after being in labor for about 20 hours.
Addison is doing pretty well. She is on the occilating vent and her oxygen levels are staying in the 80s. When we get some pictures, I will post them to the blog.
Our church RUMC has has been so loving and caring during this time in our lives. They have become our family in Atlanta as well as our strength to get through the tough days. The Prayer Quilt Ministry loving made a quilt for Addison, and they are putting on the alter this morning for everyone to fill with love a prayers. They are going to ship it to us in San Francisco, so we can wrap Addison in the love of our church and God.
I want to thank everyone at the church for being there for us and for the many prayers. I was telling Jason that all the prayers stopped my labor on Friday night. Please keep them coming.
The day shift came on at UCSFand decided to check me, and since there was no change or progression, they let me go home! We are now back at the apartment and very happy to be here. They told us that if there is any change to head back. Please pray that we can keep little Addison in for another 14 days.
Jason and I went for antenatal testing yesterday and I was having contraction and had dilated to 3 cm. They sent us over to labor and delivery at UCSF Medical Center. I labored all night and progressed to 4 cm/80% effaced, but now the contractions have become less strong and frequent and I have not dilated any more.
We were told that we will be here until Addison decides to make her entrance due to the high AFL and her having CDH, so we will keep everyone informed. We are hoping that we can keep her at bay for a little while longer.
Yesterday, we had a busy afternoon. We met with the social worker and Neonatologist, toured labor and delivery, toured the NICU, had antenatal testing, and had an OB appointment. It was nice to talk to the Neonatologist and discuss Addison's immediate and long term care plan. When we toured the NICU, we were able to meet a family whose little girl is also being treated for CDH.
Addison did great during antenatal testing. She was a little sleepy at the beginning, but they gave me some chocolate and she got very active.
The OB checked my cervix and I am now dilated to 2 cm, but it seems that my contractions are under control with the medication. He set an induction date of March 4, 2009 assuming she does not decide to come earlier.
We made it to San Francisco!!! We went to doctor's appointment (OB Consult, Sonogram, and Antenatal testing) yesterday afternoon after we arrived and found out that little Addison is approximately 6lbs 3oz. They also told us that her head is really large (like daddy) so they did not do another LHR because it would be really skewed.
When we met with the OB, we were told that I have several factors that can lead to preterm labor ... High AFL, Shortening Cervix, and Uterine inflammation. During antenatal testing, I was having mild contractions. They are concerned, and we were told that if she decides to come early that they would not stop labor. As far as Addison, she did very well during her first antenatal testing. She was active and responsive.
Jason and I are settled into our apartment on Sutter. It is actually nice and it is our home for the next two weeks. We are hoping that we can get into the Family House after that which would be nice since it is very close to UCSF Medical Center.
We have another round of appointments on Monday afternoon. We tour the NICU, meet the surgeons, have antenatal testing, and go the the OB to be checked. The doctor let us know that he is going to schedule an induction date after he checks me on Monday, so we will know exactly when the little one will be here unless she decides to make an early entrance.
Last night around 11 pm, I began to have contractions every 15 mins. We call ed Dr. S and he told us to come to Piedmont Hospital to be checked. When I got there I was 1 1/2 cm dilated and having contractions every 10-15 mins. They put me on some medication to stop the contractions and monitored me through out the night.
This morning the contractions had subsided, and they sent me home on bed rest and medication. I have also talked to UCSF, and Jason and I are flying out to SF on Friday morning and have an appointment at UCSF that afternoon.
My mom and dad have come to Atlanta to babysit me and help Jason and I get ready to go to SF.
I went to the doctor today. I was told that my cervix is shortening and was put on complete bed rest and medication to stop any contractions. I was also told that Jason and I need to get out to California in case she decides to make an early entrance into the world.
Addison looks great. She is 5.5 lbs and looks really good. She is growing and practice breathing and moving around a lot. Right now, we are just waiting for the doctors from UCSF to talk with Dr. P here in Atlanta and let us know what the next steps are in regards to our travel out to SF. I will keep everyone posted.
I went to the doctor yesterday for my weekly appointment to check on Addison's well being. The doctor told us that she looks good and is practice breathing very well and is very active which is a good sign. he told us only happy babies practice breathe and move around a lot.
My AFL is staying about the same. It was up a little, but the doctor told me not to worry too much about it since elevated AFL is common with congenital defects.
I only have 3 1/2 weeks left until Jason and head out to San Francisco. Part of me wants to speed up the time and get there faster and the other part wants to stop time. I guess it is the fear of the unknown.
Also, I wanted to thank all of you for the kind words to my post last week. I am much better now. Between your kind words and lots of prayers, I am at peace with the battle that is ahead of me and primarily little Addison. I just have to be reminded that everything happens for a reason and you do not always know why until the whole ordeal is over. All I know is that regardless of the outcome this whole experience has changed Jason and I both for the best. I will never take anything for granted again and I am now focused on what really matters in this world and that is people and god.
For the past few days, I have been a little down. I am not sure why. I have gotten Addison’s room ready for the most part and everything seems to be falling into place for our trip out to San Francisco. I think it may be the reality that she will be here so soon, and I know that as long as she inside me I can protect her, but once she is here, it is out of my control. I know that God has a plan, and I do believe in him and have faith, but sometimes, I just get the feeling that I am helpless. I wish that I could fast forward a few months and know that everything will be ok with my little princess. I think that the waiting allows you to think about every outcome which can drive you a little nuts.
I went to the doctor this morning for my weekly check up and Addison looks good! The only negative news is that my AFL increased back up to 24. The doctor told me not to worry and to continue with the low carb diet. My parents came this past week end, and we worked on Addison's room. We still need to hang a few pictures but this will give you an idea of what the nursery looks like.
I went to the doctor yesterday for my weekly check up. They checked Addison's growth and she is 4.1 lbs now and is still very active. There is no fluid build up in her chest or abdomen which is a really good thing. We also got to watch her practice breathe with the color on so you could actually see her taking in the fluid and then pushing it back out. They were able to get a few 4d pictures as well.
They checked my amniotic fluid level and it is actually down to 23 from 25.1 last week. I guess the limited Carb diet is working. I know that I do not feel as bad sticking to it if I know it is actually working.
It is hard to believe that Addison will be here in 8 weeks. Jason and I have been working on her nursery and she finally has painted walls, a crib, and changer. My parents are coming this weekend and we are going to work on the dresser and hanging curtains and pictures. Once it is all done, I will take pictures for everyone to see.
I went to the doctor this morning. During the doctor visit, I was told that my AFL is at 25.1 and normal is approximately 10. They reinforced the no carb diet to assist with the AFL and my sugar.
As far as Addison, she looks great. They were able to see quite a bit of lung tissue as well as her pulmonary arteries. One was in the 95th percentile and the other was in the 10th percentile which I was told is to be expected with CDH. She is still practice breathing and very active.
I was lucky to find my soulmate in High School at age 17. I married my wonderful husband in May 2003. We have two little fury children, Bear (Yorkie) and Bailey (Maltese) that have given us a little training on how to be parents. After 5 years of bliss, god blessed us with pregnancy of our first child. On October 23, 2008, our little girl was diagnosed with CDH. On February 17, 2008, Addison was born at UCSF. After 22 days of fighting, she choose wings over feet.
A congenital diaphragmatic hernia (commonly known as CDH) is an opening in the diaphragm (The dome-shaped muscle that seperates the chest cavity from the abdomen.) It occurs at approximately 9 weeks gestation, when the diaphragm, for an unkonown reason, fails to close completely. The hole allows the abdominal organs to push into the chest cavity. CDH is a life-threatening birth defect because it limits the growth of the lungs.
CDH occurs in every 1-2500 live births in the United States. Approximately 1,800 babies are born each year with CDH. Approximately 50% of all babies born with CDH die. CDH happens just as often as Spina Bifida and Cystic Fibrosis yet many have never heard of CDH.