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, May 1, 2009

My CDH family

Hey everyone. Things are going okay here. I have my good days and my bad days, but am managing. It is weird how life seems to go on even in the midst of such tragic events. I miss my baby everyday and think of him. I wish that he could be here with me. I wish I were still at the hospital seeing him and preparing to bring him home, but I still believe that all of this happened for a reason and am at peace with the fact that Maxton likely would not have had a very good quality of life, despite how awesome I know I would have tried to make it. :-) Anyways, this post is to give all my non CDH friends some people to add to their prayer lists- all of these blogs are on the side, I am just to lazy to link them here. :-)

In the hospital:
Ruby- on ECMO, needs many prayers that she will stabilize soon!
Carter A- was born earlier this week, having some big ups and downs. ECMO has been mentioned but not utilized as of last update.
Jaime- this little guy is a few weeks old and having his repair surgery TODAY! Please pray extra hard for Jaime, who also has hemophilia and possibly a skin disorder.
Sofie- Sweet Sofie had reherniated and has had another repair. Hopefully, this will stick, at it was a more invasive procedure than the rest. She is doing well in recovering. Sofie is 1 year old.
Jon- Jon was born a couple of weeks ago and is doing well. Has had his repair surgery and was able to be held by his parents recently!
Rory- Rory was born in Feb. at Vanderbilt. I met his family while there with Maxton. Rory is improving and will hopefully be making the journey home here soon! Pray that he continues to do well!!!
Jacob - Jacob is another baby I met while at Vanderbilt. He was born in Jan. and will also hopefully be making the journey home too! His family is awesome and I know they can't wait to have him with them.

Recently went home:
YAY!!! Kayla and Charlie were both discharged this week from the same hospital. :-) I know their parents are so happy to have them there and I am very happy for them.

Avery- due here in a couple of weeks. Those last few weeks were super hard for me, so please pray for her family!
Kamryn and Brooke- the twins are due here in June, though the may be early since they are twins! :-) Kamryn has CDH. Please pray for her awesome family.
Giavanna- also due in June!
James- also due in June in the UK!
Ireland- I think is due in August. Her family recently found out about the diagnosis and her mom seems like such a trooper. They have a hard road as well trying to learn all about CDH.

Thanks guys! There are alot of CDH babies due soon and alot still in the hospital. These families are all awesome and each has their unique struggles. It amazes me how little is truly known about CDH. Spread the word!!!

1 comment:

Anonymous said...

what a great site i lost one of my twin boys die to cdh it was a problamtic pregnancy and cdh cruely broke my heart but i am lucky i was told both my babies would die . you angel is beautiful hugs xx