Our son Maxton was diagnosed with left-sided congenital diaphragmatic hernia (CDH) at his 19 week ultrasound. Maxton was born on 3/3/09 at Vanderbilt University. He fought hard for 18 days but earned his wings on 3/21/09. Maxton was an inspiration to many during his brief time on earth and has forever changed our lives. If your child is diagnosed with CDH, please feel free to contact us. Maxton may no longer live here on earth, but he will live forever in our hearts...

To start at the beginning of our story click here and scroll all the way to the bottom.

Thursday, September 3, 2009

Happy 6 month birthday Max!

My dear sweet Maxton,
Six months ago Mommy was anxiously awaiting your arrival. I was laying in the hospital bed completely terrified and excited at the same time. I knew that your battle against CDH would be very difficult, but you were my rockstar and I knew that you would be able to do it. I remember getting an epidural and being completely terrified that childbirth would hurt.( Mommy got lucky because she didn’t feel a thing. Grandma had to tell me that you had been born!) I remember being upset because my labor wasn’t progressing and being afraid of a c section.I remember being upset that you might be born on 3/4/09 instead of 3/3/09. (silly, I know!) I remember that when the nurse came to check so that they could put in an internal monitor, I was already 10cm dialted! I remember having to wear oxygen and hating it because it was in my way! I remember laying there still waiting to push because we were waiting for the doctors from the children’s hospital. Annie later told me that she heard my doctors announce “delivery in 2” and then a large swarm of doctors came running in. I was terrified at the last moments before you were born because the swoosh, swoosh of your heart monitor wasn’t swooshing near as loud. I remember Grandma telling me you were born and looking up to see you. You were so purple! I had to ask if you were alive because I honestly thought we had already lost you. I remember looking over my knees and watching them clean you. I remember daddy getting up from his seat (he was waiting to watch you be born, but got pretty pale… yeah, daddy almost fainted, but don’t tell him I told you!) and looking at you. He had this sparkle in his eye- something I hadn’t seen before. I remember he and Grandma going over to take pictures of you while the doctors worked on you to get your breathing tube in. I remember daddy coming back and saying you were the absolute most beautiful thing he had ever seen. I remember watching them wheel you away. I remember being terrified that I might not see you alive again. I remember everything that night so vividly. Maxi, you changed my world and I am forever grateful for that one night, the night I turned into your mommy.
I remember the nurse from the NICU coming back to clean up your area while I waited to deliver the placenta (it took about an hour!). I remember that she told me you were a big boy- 8 pounds, 11 ounces! I remember that she said that you were stabilized enough to move you to the children’s hospital instead of the transition nursery and how this was a good thing! I remember going to my room and waiting to hear about you. I remember calling the children’s hospital and trying to get an update before I went to bed, but they didn’t know yet (or couldn’t put me through to someone who did). I fell asleep waiting to hear about you, and when the doctors called at 4am I was terrified because they had told me they would call in 2 hours, so they were 2 hours late! I remember the doctor telling me you were great! I was so relieved, but cautious because I had read many stories about CDH babies. Mommy never let her guard down. She was so worried about losing you. I remember Grandma wheeling me over to look at you- you were sooo beautiful! You looked like the perfect mix between mommy and daddy. You wiggled you toes when I touched them. You were so precious and I immediately loved everything about you. I just knew you were going to make it.
I remember on Day 3, when Mommy was getting ready to be discharged, getting a call saying they may have to put you on ECMO. I was SO upset and scared. I remember signing the ECMO papers and the doctors telling us that it would take about an hour. Twenty minutes later they came to get us- I was TERRIFIED! I was so afraid you were gone. They told us that they were able to stabilize you, but didn’t really expect you to make it- that the next 24 hours, if you had an “episode” there was nothing they could do. That you didn’t qualify for ECMO because of your brain bleed. I remember the look on daddy’s face. I will never forget it. But you proved those doctors wrong! You lived for many days, when they had doubted you would have them. I knew you were my hero. You are and always will be! I will be forever grateful for those days you proved those doctors wrong. In the end when God called you home, mommy didn’t want to let go! Mommy had so many dreams for you, but God had bigger plans. I still don’t know why you can’t be here for your 6 month birthday. Why we can’t be outside playing instead of me standing outside alone at your grave, but I do know that I love you. I will always love you. People will know you. People will love you. You will forever be a part of me and daddy and we will always celebrate your amazing life! Miss you sweetie. I would give anything to kiss your sweet baby face right now and have you giggle and pull on my hair. Happy 6 month birthday!!!! Know that mommy has so many memories of you that she will always cherish on your special days!

Love Always,


Candice and Rob Beal said...

that was so touching.....i just balled the whole time i was reading it. I am praying for you and Kristi extra hard today! I'm so sorry that you lost your baby. i'm very very sorry.......lots of love

Tracy Meats said...

Thinking of your precious angel today. Your letter to Max is beautiful and he was so lucky to have you as his love him with all your being. Max will always be with you. I hope he is sending you butterfly kisses from heaven.

Much love to your family,
Tracy Meats, mom to Ian, born 4/3/04

Missing Kasey said...

Max is very proud of his mommy! Thinking of you today. ((hugs))

bobdoble said...

Such beautiful words! I wish that you didn't have to be that parent, like most CDH parents, that have lost their Angel's. Thank you so much for sharing your thoughts and feelings with us! And I will continue to have thoughts and prayers for your family!

Craig and Kristi Kuehl said...

Loving you from California today (and everyday)! Having a pretty rough day, can't stop crying. This sucks!

Michael and Elizabeth Reeve said...

Sending you so much love, this and every day, you're an amazing Mummy to your beautiful Angel.

God Bless

Beth xxx

Just Breathe said...

I am so sorry for your heartache.
Praying for your comfort. ((HUGS))

Bree said...

Thinking of you and Maxton today.

Elizabeth said...

Beautiful. Why? Perhaps it is because all the little things - now seem so little. And the great things - Maxton for one - are so great.

Happy 6 months precious one! Please don't listen to Cecilia (she is full of ideas that will get you in trouble up there!)

Kate said...

That was a great letter! And I'm so sorry he can't be there to get that kiss from you! :(

I do want to say tho, I wanted K to be born on 3-3-o9- so no it wasn't silly for thinking that- 3-3-09 was square root day- it was cool! :)

Jaime Smith said...

What a great letter to your sweet Max. He has got to be so proud of his mommy for all that you are doing. keep it up and we love you!

The Smiths

Beth said...

I am sorry I am late to post, Ashley. I hate that we're apart from our babies. I can't stand it actually! I am so sorry for your loss. I struggle to find meaning in it all too. I spent Sylvi's six month b-day doing the same thing--reliving her birthday over and over and standing at her grave by myself bawling. I'm here for you always, Ashley!
Much love,

Anonymous said...


I just wanted to say thank you so much for the picture you send in memory of Evie, it was so so kind of you and we really appreciate it. It is absolutely beautiful.
Thanks also for your blog posts as we went along, it was reading posts like this that kept us going.
I am just so sad that this condition took our babies from us.
I am not updating my blog anymore but if you would like to keep in touch my email is

Lots of love
Kerri (Evie's mummy) xoxox

The Barnos said...

I was just looking at your (cousins?)blog -lilblueboo-and found a posting on the loss of your baby. My nephew lost his battle w/ CDH 6 months after his birth and I just wanted to send my condolences. This disease just really sucks and I'm also so thankful for his short time here b/c he taught me so much about living.
Best of luck to you. As my sister says, she's now part of a club of people she'd never thought she would be-but she wouldn't change it for the world. She was told to abort her pregnancy and she's so glad she didn't.

Anonymous said...

I stumbles across your blog and I am so sorry at your loss. You will be a wonderful mother someday--I can tell. God is holding your hand through this and He will guide you--trust in Him. I watched one of my best friends go thru this with her daughter 7 years ago. Liver transplant at 4 months old . . . she survived! She will be 7 in November! It has been a long tough road though . . . my prayers go out to you and your family.