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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, March 13, 2009

Holding His Own

Maxton is such a little fighter! He is hanging in there and still letting them wean away. I am so glad to see him making progress. Last night he was weighed and weighed 10 pounds 4 ounces. This morning in rounds the doctors were pleased that he had gotten down closer to his birth weight. I think they forgot he was a big baby again because after the resident said how much he weighed at birth both the fellow and attending were like.. oh okay, so he is close to his birth weight. :-) I was like yeah... he was a big boy! Anyways, basically it looks like surgery will likely happen sometime next week. I am thinking earlier in the week, but a date hasn't been discussed. I know he is pretty much weaned down to the levels they want him to before surgery so he just needs to lose a little of the swelling. He looks so much better now... like a baby again. :-) I love looking at his little face.

The doctor took time to caution me that Maxton could be very sick again after surgery, possibly worse than he was before surgery. I am hoping that this is not the case. ECMO was mentioned again- that he might need it after surgery, if he is a candidate at that time. David and I are very nervous about ECMO due to the previous brain bleed. It hasn't been checked lately, but would be before going on ECMO. I was aware that he would possibly get very sick again but am hoping and praying for the best. I know my little man can do anything as he has proven this several times now.

The plan for today was to continue to wean his dobutamine from 8 to 3.. which may possibly be done by this point as they were weaning one an hour. I think that was the entire plan other than losing some more weight. Doctors rounds go much quicker when you are doing "well". :-)

As always, thanks for the prayers and kindness and support. You other CDH moms are awesome! And obviously I love my family and friends and everyone else who also checks the blogs. Please continue to pray for us and also all the CDH families out there as this condition is so very serious and scary.

10 comments:

Dotty said...

hey, im so glad to hear he is doing so well. ive been reading every single update, but i havent been good at commenting, sorry. Maxton is always in our thoughts and prayers. im soooo proud of him for doing so well. way to go!!
God Bless

Marion said...

Ashley,

I am keeping you and Maxton in my thoughts and prayers. I am glad to hear that he is doing well. He is a fighter and will beat CDH.

Tracy Meats said...

Great news!! I hope Maxton loses some of the swelling and fluids over the weekend and can have his surgery next week. Many prayers that he will have a very successful surgery and continue to be stable afterwards. He has proven to be a fighter. Have a "good" weekend with good progress Maxton!! Sending you lots of love and positive thoughts and energy.

Tracy Meats- mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Alex & Ingrid Houchin said...

We are so glad that Maxton is doing so well. We are keeping fingers crossed that he continues to improve and that he will get to surgery soon. Keep fighting little one.
Hugs from the UK.

Elizabeth said...

This is good and the doctor is right but they also should always give us the best case/worst case too.

Keeping you all in my thoughts, prayers and Lung Function chants too! Come on Maxton - you can do this! Kick some CDH bootie!
Elizabeth

Jaime's World said...

Maxton,
You're doing great...hang in there little man!
Best wishes for an uneventful weekend!
Love and prayers,
Sheryl and Tom

Jonathan and Sarah said...

I'm so glad to hear he's doing well still! Yes post-op Noah looked AWFUL...but after a day or so he started looking less bloated & back to a "normal" color... hang in there! We are praying for you guys!!!

Craig and Kristi Kuehl said...

This is such good news. Prayers are working and Max is amazing us all at how hard he is fighting. I know you and David are very proud of how he is improving. Keep up the pep talks :) Whatever it takes...

Rachel said...

hey i am so glad to hear that he is doing so well. You guys are in our thoughts and our prayers. I am so glad to hear that he is doing so well. Way to go!!! God bless and Love you guys

Lisa said...

I am glad to hear Maxton is holding his own and hope he gets better and better with every passing day! Keep giving him pep talks.