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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.

Friday, October 24, 2008

Doctors, doctors and more doctors.

So I got my first letter from Vanderbilt Children's Hospital, where Max will be treated. I was told by my OB that I would have an appointment with a surgeon on 10/29. Well, when I got the letter I actually have 4 appointments with 4 different doctors. Little Maxton is going to be VERY well taken care of. I have an appt. with another OB doctor, a surgeon, a neonatologist, and a genetics counselor. David and I will have a busy day. I requested that he ask off, which of course, he did without hesitation. However, he is still unsure about when to tell people where he works. Most of my coworkers already know, but that is because we are pretty close and I think (in part) because I am a woman. David is different in regards to this and I respect that, and understand, but at the same time he is going to have to tell them eventually. If any other CDH moms, or anyone for that matter, have any advice on when he should do that, I would appreciate it. Otherwise, I am keeping my spirits high and trying to remain very positive as I believe that Max can tell when I am sad and happy, so staying happy has to be good for him. :-) I have heard from some other mothers who have experienced what we will be going through over the next few months and am looking forward to hearing/reading more about their stories. David and I really appreciate everyone thinking of us and little Max. I will likely update after our long day at the hospital next Wed.

6 comments:

Dawn T. said...

http://www.cdhsupport.org/members - over 300 stories of CDH families and believe me, you'll get LOTS of support and advice on this over there! :)

Continued prayers for you and cherub Maxton!

Owain's mommy said...

Hello

I just found your blog through Nayeli. I know are scared you must be. Last year around this time we were preparing for our son's birth born with LCDH. He just turned nine months and is doing great!

I wish the best for Warrior Maxton. I will add him on my prayer list.
If you need someone to talk to that has been on the CDH roller coaster ride please email me @ OwainsMommy@gmail.com

CDH babies are tough and they are born fighters!

Amber

P.S As far as telling work your husband will know when it is the right time. My husband told right away.That way his boss and co-workers understood why he needed to take time off to go to so many Doctors appointments.

Fer said...

I know how scared and stressed you must be feeling by now. I'd be more than happy to share my story with you. Please email me at maferarceamare@gmail.com
Fer
Mom to Juanpa (RCDH)
Mexican Cherubs Rep.

Tracy Meats said...

Hello, I just found your blog through CHERUBS and a prayer request for baby Maxton. I am a mom to a 4 year old CDH survivor! I know you must feel very overwhelmed with emotions, for my son was not diagnosed until birth. I wish I would have had the time to prepare, learn about CDH, find the right doctors to care for my son, visit the NICU, and the list goes on. Every CDH baby is different, so don't let one story bring you down. Believe in miracles and have hope and faith for your son--he is going to do amazing things. If you ever have questions, please feel free to email me and CHERUBS has a ton of support to offer to you and your family. Many prayers for a great appointment on the 29th and you can find out more how your son is doing.

Hugs,
Tracy Meats - mom to Ian(born with a LCDH on 4/3/04) and WY and CO State Rep. for CHERUBS
tmeats@cherubs-cdh.org

Amy AKA "Baba" said...

Hello! I found your blog through the CDH blogring. How wonderful to "meet" you, although I wish it were under different circumstances.

Our daughter, Liviana was born on January 18, 2008 with a LCDH (and a Ventricular Septal Defect and multiple hemivertebrae). She is a thriving, growing, active 9 month old now. She has changed us all.

You can visit our blog, which started in October when we got our diagnosis. I was teaching a class at the university and still remember having to tell my students, since we knew we would be relocating. I think it was the first time that the room full of college juniors didn't have blank stares on their faces. My husband told his boss right away. They were close and his company had an office in Omaha, where we relocated to so they were all involved in the process. I think your husband can tell them in his own time. It will likely come up as the doctor's appts. increase and he needs to be away more.

I wish you the best. I hate knowing another family is going through this experience. We just passed the 1 year anniversary of our diagnosis.

My thoughts are with you.

Amy
livianasjourney.blogspot.com

casau said...

hello. it is a scary thing to go thru. i havent been thru it personally but i had a close friend go thru it and i PROMISE you that if you get any offers of support or words of wisdome from these comments,, PLEASE! understand these people KNOW what they are talking about and the support offered,,, blows my mind!!! you will never have better "friends" then the ones you are about to make on this journey!! take everyone up on their offers as i have learned no two babies go thru the same experience and all have a piece to add to this puzzle. prayers from people who you may never meet,,, thats one of the GOOD things that can come from this horrible journey!!