Thursday, June 4, 2009

The First time we heard Congenital Diaphragmatic Hernia

June 4, 2008 forever changed our lives. We were so excited to go to our Ultrasound appointment. We were told that this would be the day we would know if we were having a boy or a girl. I met with Shane at the hospital after work. I was nervous and had a weird feeling something was wrong all day. The songographer started the ultrasound and was very chatty with us. She never made us feel like there was anything wrong. Shane and I did notice she did focus on the chest alot. We told her we didn't want to know if it was a boy or girl. We asked her to write it down on a piece of paper for us to take with us to dinner to celebrate when we opened it. The Doctor came in and was very serious. She looked at me and said there is something wrong with our baby. I froze, looked at Shane, and tears started to come down my face. The Dr. then said she needed to take a closer look and would answer any questions after she was done. I asked if it was serious, the Dr. respomded yes. I lost it! I couldn't stop crying. Shane and I held hands as the Dr. was taking a second look. Then the Doctor told us our baby has Congenital Diaphragmatic Hernia. Shane and I looked at each other and were puzzled, what is that? The Docotor just kept saying liver up. We were clueless about CDH. The Doctor walked out to give us a minute alone. Shane and I held each other tight and cried. We then decided to look at the piece of paper the songrapher gave us. We found out we were having a girl. We had a amnio done that same day to make sure ther were no other abnormalities. I was scared the entire time I almost passed out when I saw the needle go into my tummy.

Shane and I drove home in seperate cars. I prayed the entire way home and couldn't stop crying. Shane and I didn't have any idea of what we were up against. Shane went on the internet to research CDH while I sat on the couch crying my eyes out with Twinkie and Molly next to me. Shane and I couldn't go to work so we both stayed home for two days. Shane searched on the internet non stop for CDH information. While I just cried and prayed. I never asked why me? Instead I said God please help us. All of the information we were getting on the internet was making us feel hopeless. We finally came across Breath of Hope and Cherubs, these two websites helped us so much. Everyone on their were so helpful and we will forever be grateful. We started finding blogs that we got hope from: Claire, Ava and Cadenne. I will always remember these three because I was glued to them for comfort. Now it's our turn to do the same for someone else. We have a miracle that God gave us and we thank God everyday. Not a day goes by that we don't thank God for our precious little girl. When she is happy we laugh, when she is upset we comfort her and when she cries we hold her tight and love her. We will never forget June 4, 2008 and how it changed our lives forever. We have a circle of CDH families that were once strangers and now feel very close to and have supported us along the way. We thank all of our friends and family for continued support. We had the strength to get through this because of you. We are forever grateful and love you.

We have all the CDH babies fighting the battle in our prayers and those families who are finding out that their baby is diagnosed with Congenital Diaphragmtic Hernia. We also have special prayers to all the mommy and daddy's who have lost their precious little one to CDH. We think of your little angels every night.

This song touched me in a way that I will never forget when I found out Nayeli was diagnosed with CDH. It reminds me to Praise God in good times and bad. I found this video and thought I would share it.


Vince and Patty said...

Your blog was to us what Claire, Ava and Cadenne's blogs were to you and we are eternally grateful for the hope that you and Nayeli were able to give us from the time we received our diagnosis to today. People who have not traveled this journey cannot possibly imagine what it is like, but we are all so much stronger because of it!

Marion said...

I found your blog the day Addison was diagnosed with CDH (October 23, 2009). I had found so many negative things on the internet and then I found your blog. It gave me hope to read your word and to follow Nayeli's journey. I also want youto know that you are forever endeared to my heart for the phone calls, posts, and visits during my journey. God put you in my life and I thnak him everyday for it. Much love form Atlanta, Marion

Jonathan and Sarah said...

That CD was in my car when Noah was about to be born & stayed there! (Still is in it!) I listened to that particular song sooo often! God is so good to have music like that to lift us up!! When Noah was diagnosed I was forbidden to look it up online so I didn't hear about the groups until after he was born, which I kinda wish I had so I could have met others going through it, but Jonathan just didn't want me to freak out over all the sad stuff. I love your Nayeli updates! She is so precious!

Irvin family said...

Like you Brian and I started searching the internet for information about CDH when our Oakley was diagnosed on October 3rd. I found your blog and it made what seemed hopeless have hope.
The moment we found out we also started praying and turned everything over to GOD. I still watch Nayeli's blog everyday and like Nayeli our Oakley has beaten the Monster CDH. We give all the glory. The song Praise you in the Storm was played in my car so much that all of our boys know it word for word. It is a song that is so true that we knew no matter what the out come be that we would praise God and he saw us through the storm. Holding Oakley all the way.
Your Nayeli has given so many of us the hope that we all need to get through CDH.

Thank you for sharing Nayeli with us.

Love Sheree

Liz and Shane said...

I still have that CD in my car too. It only came out while I was in labor so I can listen to it then.

brad.kellie.carter.lucy said...

Your post gave me chills. It's hard to relive that moment. Thank you for sharing it with us and the world. We are so blessed to have you in our lives. I hope Nayeli, John Michael and Carter will be able to meet and become good friends one day. God works in such mysterious ways ~ how else would a family from Alaska, a family from California, and a family from NC go from strangers to friends overnight without ever meeting?

Stephanie said...

Hearing your story truly touches my heart. We found out at 13 weeks at the Nuchal Fold test. We went in for that test, b/c we heard that you could see the sex of the babies that early now. They wouldn't confirm the diagnosis, b/c it was so early, so we had to wait 3 more weeks before they said she definitely had it. Those 3 weeks were torture. I was in denial and Shawn was researching his heart out. Once they confirmed it, we found Breath of Hope and Cherubs too. BOH is where I met Sheryl Trost. Once I connected with someone going through the same thing, I finally accepted it. Our circus is about to start in about a week and a half, as the twins will hopefully wait to be born on the 17th. We'll see though. Also loved the video and song. Is that Jeremy Camp? Can you email me to let me know?

Your blog is incredible. Sending you love!

Love, Stephanie
Brooke and Kamryn's mommy

Megan Larson said...

Your post and Kellie's post about Diagnosis day brought those first days back. You all had a month longer to worry and research than we did...thank goodness we all found out in advance so that we could do what we could to fight the cdh monster.

Liz, you do so much for cdh families. There are cdh folks leaving you messages that I have never heard of. You help so many and do so much. The phone calls, messages, and outfits are so wonderful, and I cherish them all.

I actually just heard from another cdh family who saw my youtube video of John's CDH Journey. They were just diagnosed and when I read their email, it was full of the emotion and questions and naiivete that I remember from our first days of Knowing, and from what I read of Kellie's and your experiences, the same feelings and thoughts as you all had, too. I had tears reading Kellie's post, tears reading your post, and when I read this sweet email from them, desperate for answers and frustrated with the negativity they found, I really broke down. It is amazing that our three have beaten the odds. I gave the family yours and Kellie's blog addresses so I hope they found them and see what is possible. I haven't heard back yet from them but I hope to soon.

Thank you so much...I'm so glad you're in my life.