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.

Sunday, March 8, 2009

Teeny Tiny Steps

Maxton has had a pretty uneventful couple of days. He has a few "mini" episodes but is able to recover pretty quickly with his preferred regimen of fluids and a bump up on the vent or oxygen. I think the doctors have finally figured out exactly what he needs when he is starting to have an epsiode and have been able to keep a larger one from happening. Today they were able to wean his oxygen down to 80 but he had a mini episode so it was back u pto 84 when I left. The plan overnight is to simply wean it back to 80. The larger picture goal is to get it down to 60.

I think the doctors wanted Max to make bigger progress in the beginning but have now learned to listen to him and to understand that he will do things in his own time. I am so proud of how hard he is fighting. Whenever I visit him he looks so precious and tries to wiggle his little toes (nice to see but I wish he would just rest).

The good news is that CO2 levels are up. Today one was 38. The doctors had said yesterday they would like to see them above 30 (yesterday morning his highest was like 26). So I was very glad to hear 38 this morning.

Overall I think Maxton is doing a little better. I think the doctors would like to be able to put him on ECMO but are still not able to because of his brain bleed. It is not any worse, but still not any better so for right now the plan is still the high oscillating vent. We were told today that Max is basically getting the treatment that would have been given to ECMO babies before ECMO existed. I am okay with that.

Thanks for checking the blog and leaving posts. Everyone is so encouraging. I am so proud of my little Hoss. Praying for a restful night.


DJ said...

As one has said before, "baby steps." They are precious, and it seems Max's steps are in the right direction. We are praying for a peaceful night for your family and a joyful morning for you, with good news to greet you and your family.
With love always,
"The Joneses"

Jaime's World said...

Thank you for the updates! Baby steps are just fine! :-)
Hope you all are able to get some rest tonight!
Love and Prayers,
Sheryl and Family

Elizabeth said...

The key to these babes are the staff listening to them. It is an odd thing but Max is leading in this dance. I'm hoping and praying this roller coaster gets easier - the C02 levels are good. Keep it up Little Hoss!

With thoughts, prayers and Lung Function chants,

Tracy Meats said...

Baby steps is what works. Letting Maxton's body rest is very important and he will let you know when it is time to adjust his support. Praying for a peaceful night and a very good day tomorrow!!

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

Anonymous said...

Baby steps are good. We are constantly and faithfully praying for Maxton!

We are here if you need anything!

Vincent said...

Maxton, Ashley, and David
We've been keeping up with everyones progress with Johnny and Donna and church. We are holding all of you up constantly in prayer. Praise our Lord for Maxton's success so far. Be patient and wait on the Lord. We love you dearly.
Vince and Pam

Rhonda in KY said...

Baby steps are just fine Maxton. Please keep 'em coming and in the right direction.

Love & Prayers from all of us.

Laurissa said...

Good morning Ashley & Family,
I check your blog daily and thank you so much for updating it!!! We are praying for Max and remember everyday is a new beginning!!!
We miss you!!

Katie said...

Girl, that baby is GORGEOUS...I'm praying and praying for your family and for all the teeny tiny steps to a full recovery and a happy baby Max. I'm so glad you put up this site so we can keep posted.
Audrey and I are thinking of you.
Love, Katie

KalebsMommy said...

Ashley, David & Baby Maxton:
You guys are continually in my thoughts and prayers. Remember that all things are possible through Christ.


We miss you.

Craig and Kristi Kuehl said...

The prayers are WORKING!! We will take the baby steps in the right direction--like I said before, he will do things at HIS pace--just like a man!

Just know that we are thinking about you and praying for Max. Continue to keep us posted :)

Kathryn said...

Max, you and David are in our prayers constantly. We check the blog multiple times a day. He is so beautiful! We have a small gift to help with some of the expense of traveling back and forth to the hospital. I can leave it at your home or drop it at the hospital. You are loved and missed. Please know you are thought of and prayed for many times a day by your team.