Virginia Addison Acord

Parker Reese Foundation - Sponsor a Night 2010‏

2010-06-21T12:55:00.001-07:00

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 t-shirt today and wear it to show your support for families staying at Parker's House. Each t-shirt purchase shares one night with a family that calls the House, "Home."

It's a different year and that means a different design but with the same purpose. The Parker Reese Foundation has been providing free housing since May 2008. Help us help families diagnosed with congential diaphragmatic hernia by purchasing your shirt today!

Please purchase a t-shirts(s) at http://www.cdh-fundraiser.com/sponsoranight.html to help sponsor a night at Parker's House. If you have any questions please feel free to email us at info@theparkerreesefoundation.com.

Help us continue our mission by buying a shirt. Thank you for your support.

March 11th

2010-03-08T12:27:00.000-08:00

Thursday, March 11th will be Addison's one year angelversary. It is hard to believe that I have almost lived a year without my precious baby girl. This time last year I was praying for a miracle to save my baby girl and this year, I am praying for continued healing and for God to show me the right path.

Addison changed my life for the better, and I know that I will be a better parent to little man because of the lessons that she taught me. My hope for the future is that I can use this experience to impact people's lives in a positive manner and let them know that anything is possible through God. My faith in God is the only thing that kept me going in the beginning.

Happy Birthday

2010-02-17T07:33:00.000-08:00

I want to wish you a very happy birthday sweet angel. It is hard to believe that a year has passed since you entered so briefly into my life. I can still remember the fear and excitement that I felt awaiting your arrival. I will always remember the first time I laid eyes on the most perfectly made little girl. God truley let one of angels enter to earth of ra little while. You had big plans for mommy and daddy. You made us realize what is truely important in life and that no matter how bad things can possibly get God is there for you. You made both both mommy and daddy much stronger and better people.

I will always remember February 17th as the best day of my life when I received the most amazing gift that can be given.....I became a mom!! My little angel....I want you to have the most amazing birthday in Heaven with your other angel friends and make sure to tell your Great Grand parents and your cousins to give you lots of love from mommy and daddy.

Scrapbook

2010-01-18T06:28:00.000-08:00

I started a scrap book for Addiosn when I was pregant in hopes that I could write about how strong she was and her victorious battle over CDH. Unfortunately, that was not the plans that God had in store for her or us, so I had been debating on whether or not to finich the book. Well, yesterday, I decided to go through all the pictures, cards, and papers and finish her scrapbook. It was actually a very uplifting experience. I was able go through all of her things with a level head and actually reflect on how amazing she was and how she changed our lives.

I am really happpy with how it turned out and will share it with her little brother when he is old enough to understand. I want him to know that he has an amazing big sister who is always watching over him.

New Blog

2009-12-18T10:50:00.000-08:00

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/.

Living One Year with CDH

2009-10-21T06:50:00.000-07:00

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.

Win 2 Roundtrip Tickets on AirTran Airways!

2009-10-13T07:15:00.000-07:00

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 marion@theparkerreesefoundation.com.

CDH Funds are Just a Click Away

2009-09-10T05:57:00.001-07:00

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.

Thank you for your support!!

Ireland Rose

2009-08-31T05:18:00.001-07:00

Ireland Rose lost her battle to CDH. Please keep her family in your thoughts and prayers. I know how hard the coming days, weeks, and months will be for them. Much love to the family!!

The Parker Reese Foundation Fundraisers

2009-08-30T07:01:00.000-07:00

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

For information on any of the fundraisers listed above, please visit www.cdh-fundraiser.com.

Change for CDH

2009-08-27T10:05:00.000-07:00

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!!!!

Hello

2009-08-19T06:06:00.000-07:00

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!

The Beach

2009-07-29T10:05:00.000-07:00

Jason and I went to the beach with my family the first week in July. I really love the picture that he took of my niece and a friend looking out into the Ocean. They are sporting Turquoise for CDH!

CDH Crosses

2009-07-29T09:34:00.001-07:00

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 (marionacord@hotmail.com) the following:

Baby's full name

Birth Date and Death Date (if applicable)

Your name and full mailing address

Addison's Marker

2009-07-21T05:09:00.001-07:00

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.

Letters for CDH

2009-07-16T05:30:00.000-07:00

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.

Update and Sand Picture

2009-07-12T15:26:00.000-07:00

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.

Father's Day

2009-06-21T13:39:00.001-07:00

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.

All is Well

2009-06-08T06:35:00.000-07:00

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.

PHOTOGRAPH FUNDRAISER

2009-06-04T07:31:00.000-07:00

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.

Please contact me to purchase a session by July 31, 2009 or if you have any questions at 404-849-1800 or marion@theparkerreesefoundation.com.

Happy Birthday Addison!

2009-05-17T04:45:00.000-07:00

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!

Susan G. Komen 5K

2009-05-13T14:36:00.001-07:00

Tracy and I did the 5k last saturday in honor of her mom. I had a great time and plan on doing again next year!

Update

2009-05-08T06:34:00.000-07:00

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.

Sponsor a Night at Parker's House

2009-05-03T04:39:00.000-07:00

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.”

If you are interested please email me at marionacord@hotmail.com for more information and/or an order form.

CDH Thoughts

2009-04-22T05:02:00.000-07:00

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

2009-04-21T04:33:00.000-07:00

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

2009-04-13T19:38:00.001-07:00

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

2009-04-12T13:38:00.000-07:00

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

2009-04-08T05:29:00.000-07:00

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

2009-04-07T06:14:00.000-07:00

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

2009-04-03T08:25:00.000-07:00

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

2009-04-03T06:13:00.001-07:00

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.

CDH Awareness Day

2009-03-31T08:35:00.000-07:00

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

2009-03-29T11:06:00.000-07:00

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

2009-03-29T10:40:00.001-07:00

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

2009-03-24T07:05:00.000-07:00

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

2009-03-15T13:31:00.000-07:00

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

2009-03-12T14:53:00.000-07:00

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

2009-03-11T15:43:00.001-07:00

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

2009-03-09T18:00:00.000-07:00

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

2009-03-07T08:14:00.001-08:00

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

2009-03-07T07:48:00.000-08:00

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

2009-03-05T11:05:00.000-08:00

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

2009-03-03T13:28:00.000-08:00

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

2009-03-01T08:18:00.000-08:00

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.

Holding Steady

2009-02-24T08:11:00.000-08:00

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 into the 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!

Update

2009-02-23T08:47:00.000-08:00

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.

Update

2009-02-22T08:44:00.000-08:00

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.

Day Three

2009-02-20T19:20:00.000-08:00

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.

Day Two

2009-02-20T17:48:00.000-08:00

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!!!

Pictures of the Princess

2009-02-18T17:12:00.000-08:00

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.

Addison is here

2009-02-18T12:24:00.000-08:00

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.

Prayer Quilt

2009-02-15T07:30:00.000-08:00

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.

Update - UCSF

2009-02-14T12:32:00.000-08:00

The day shift came on at UCSF and 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.

UCSF

2009-02-14T10:34:00.000-08:00

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.

UCSF Appointments

2009-02-10T05:41:00.000-08:00

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.

Update - SFO

2009-02-07T14:59:00.000-08:00

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.

Update

2009-02-03T13:56:00.000-08:00

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.

34 Weeks

2009-02-02T13:56:00.000-08:00

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.

33 Weeks

2009-01-27T06:46:00.000-08:00

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.

Thoughts

2009-01-22T07:15:00.000-08:00

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.

32 weeks (Nursery)

2009-01-19T12:28:00.001-08:00

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.

31 weeks

2009-01-13T05:45:00.000-08:00

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.

Update

2009-01-05T12:52:00.000-08:00

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.

Update

2008-12-30T11:07:00.000-08:00

It has been a while since I last posted. I hope that everyone had a wonderful holiday! Jason and I went back to Mississippi for Christmas. While we were home, a few family friends gave us a baby shower. It was so wonderful to celebrate little Addison without thinking about CDH. Everyone at home is so supportive.

I went to the doctor yesterday and today. Yesterday, they checked Addison's growth. She is about 3lbs 2 ozs and has no fluid build up in in chest or abdomen. We actually saw quite a bit of lung tissue on the right side and she is practice breathing. The only negative is that my amniotic fluid level is starting to creep up. They are going to continue to watch it and if it continues to creep up, they are going to put me on bed rest for the remainder of the pregnancy.

Today, they found sugar in my urine and my blood sugar was on the high side of normal. The doctor told me to cut out all refined sugar and limit my carb intake over the next two weeks and they will test it again.

Doctor's Visit

2008-12-22T06:51:00.000-08:00

I went to the doctor for my glucose test and the weekly check up on the baby. My glucose test came back negative and Addison is growing and has no fluid build up in her chest or abdomen. Currently, her estimated weight is 2 lbs 9 oz. They said that she is very active and doing well.

Jason and I have decided to go to UCSF for the delivery and after care for Addison. I will have to go to San Francisco in my 36th week and stay until the induction.

UCSF Update

2008-12-18T04:45:00.000-08:00

We went to San Francisco on Monday night to meet with the UCSF team on Tuesday. After all the tests, it was determined that the LHR that was given to us in Cincinnati was lower than the one calculated at UCSF. At UCSF, the LHR was in the range .9 to 1.4. After a lot if thought and prayer, Jason and I decided that with her LHR being higher; it was not worth the risk of the surgery. We are praying that GOD will continue to bless us and give her the strength to grow and develop.

I thank everyone for your thoughts and prayers. It really helps having a group behind you that understands and can really support you!

I go to the doctor today for my glucose test and then on Friday for her weekly check up and stress test. Keep us in your prayers!

Off to San Francisco

2008-12-11T06:39:00.001-08:00

During our visit at Cincinnati, the doctors recommended that we talk with UCSF about the Tracheal Occlusion surgery. We were contacted by the nurse at UCSF yesterday about the procedure and were asked to come out for a consultation. Jason and I decided to go for the consultation and determine if we wanted to proceed with the procedure. The only catch is that we have the consultation on December 16th and will have to make a decision immediately. The last day that they can do the procedure is December 18th since I will be 28 weeks on Friday, December 19th.

It is really hard to plan for this since we are not sure what we want to do about the procedure and will be traveling across the country. If we decide not to have the procedure, we will come back on December 17th; if we decide to have the procedure, I will not be coming back to Atlanta until late January.

26 weeks

2008-12-09T10:52:00.000-08:00

We went to Children's of Cincinnati yesterday for our initial consultation. During the day, I had an echo, ultrasound, and MRI performed. We also met with the family support group, a geneticist, and all doctors that are assigned to the CDH team.

At the conclusion of the day, we attended a team meeting with the head of the CDH team, the geneticist, and the CDH neonatal surgeon. During the meeting we reviewed the images and test results from the day and were told that these tests indicated that Addison had LHR of .83 which puts her in the high risk category. They suggested that we talk to USF about the Tracheal Occlusion surgery and referred us to USF for a consultation.

We are currently trying to decide whether to have the surgery which has to be done between 26 -28 weeks or to manage her care after birth. It seems like there is no right answer or evidence to direct you to one way or the other.

I also went to my fetal doctor today for the biweekly checkup and ultrasound. They were able to perform a 3d/4d ultrasound and got amazing pictures of our little princess. She looks exactly like her daddy.

Amniocentesis

2008-12-02T07:57:00.000-08:00

We heard yesterday back from the doctor on the amniocentesis results. Everything is normal. When I heard those words, I just wanted to jump through the phone and hug the doctor and pray to GOD all at the same time.

I guess that God is hearing the numerous prayers for my little princess.

I will be going to Cincinnati next week for my first appointment. I am hoping that I will finally have some answers and a plan. The not knowing is driving me nuts. It is like being on a roller coaster. I have the days where I just know that it will all work out and she will be OK, and then there are other days when I wonder what if it is not.

24 Weeks

2008-12-01T06:29:00.000-08:00

On Tuesday November 25th, we went to the pediatric cardiologist for a check up. During the visit, we were told that her pulmonary vein on the left side was developed and functioning normally, and the right side was functioning but at a reduced capacity. He also told us that her heart is strong, functioning normally, and growing appropriately, and he did not see any reason for us to see him again until she was born.

We have not heard the results from the amniocentesis, so I am a little stressed out. I found out that we have been referred to Children's Hospital in Cincinnati for the remainder of her prenatal care and delivery. We will have to go for a visit in a week or two.

23 weeks

2008-11-21T09:41:00.000-08:00

We went for the amniocentesis and a check up today. My little girl was extremely active and growing on schedule. Today, the sonogram showed that her liver and stomach were both in her chest. We still have not gotten the results from the MRI; the doctor told us that the doctor here in Atlanta did not feel that her results were acurate, so she sent the MRI pictures to a doctor in Cincinnati for further review. The doctor told us that he hopes to have the results from the Amnio fish and the LHR numbers before the Thanksgiving holiday.

He told us that since the AFP test that was done at 16 weeks was negative that there is a high likelihood that the Amnio would be fine as well. Finally, a peice of good news!!!

22 weeks

2008-11-21T09:18:00.001-08:00

Jason and I decided on a name for our little princess. We decided on Virginia Addison. The Virginia is for her two great grandmothers, her grandmother, and her mom, and the Addison means "awesome" which this little one is already. We figured that she deserved the namesake of 3 generations of strong women to fight the battle that is laid out before her. As far as the doctors, we are in a holding pattern; i feel like we do not much more than we did two weeks ago. We still do not have the results from the MRI.

I feel like we are on a roller coaster that will never end. All I can do is pray and hope for the best. The doctor called and told us that he needed to perform amniocentesis to rule out any congenital defects. The appointment is scheduled for November 21st.

21 weeks

2008-11-21T09:14:00.000-08:00

On November 6th, we had an MRI to check her organ and lung development. During the entire procedure, she was very active. I guess the noise bothered her. We were told that we would hear something back in a week or so regarding the results.

20 Weeks

2008-11-21T09:03:00.000-08:00

I had an appointment with the Fetal Diagnostic Center for a high resolution sonogram on October 27, 2008. During the sonogram, it was confirmed that we were having a little girl and that she had CDH. It was explained to Jason and I that she had a hole in her diaphragm which was allowing her stomach and potentially other abdominal organs to move into her chest. Due to the presence of the organs, her lungs were cramped and may not develop. We left this appointment with another appointment in a month for a check up and an appointment with the pediatric cardiologist. It seemed that we had so many more questions but no answers.

On October 29th, we went to the pediatric cardiologist to have an echo performed on the baby. During the entire procedure, she kept playing hide and seek with the doctor. I guess it is a good sign that she is so active. During this appointment, we were told that her heart is structurally normal and seems to be growing well, but he did not see what he had hoped for in the pulmonary artery. He said it could be either that it was not developing correctly or it was just too early to see. He scheduled a follow up appointment in 4 weeks to check her progress.

19 weeks

2008-11-21T08:57:00.000-08:00

On October 23, 2008, Jason and I went to have a routine sonogram. We were so excited to see our little one and find out whether it was a boy or girl. During the sonogram, the tech grab my arm and told me that something was wrong. I could not breathe and almost fainted. After meeting with the doctor, we were told that they suspected a congenital diaphragmatic hernia (CDH). The doctor referred us to another doctor for further testing. At the time, I was in shock, and Ihad no idea what CDH was or what it meant for our little one.