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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.

Monday, November 3, 2008

Goodbye Maternal Fetal Group

Today I had another MD appt. at Maternal Fetal Group. They have been with me through the possible hygroma and the CVS test and now this. I know I only went there a few times, but the doctor there was my favorite and I will miss him. Today they did a scan of Maxton and it showed that the the stomach was up and the liver was definately down for right now, which is good.. lets hope it stays that way. They could also see lung on both sides, which I was very happy to hear. Otherwise, we didn't hear too much new today.

I talked with the doctor about my experience at Vanderbilt and when I mentioned my doctors name he said.. she is really knowledgeable but a little cold, which was the same impression I got. He said he doubts it will get better but to know that Max is getting the best care (even though the customer service may not be the best). Like I said.. I am sad I won't see Dr. Lombardi again, I really liked him and how straight forward he is.

Thanks for the support guys! I really appreciate it. I have been a little drained emotionally lately dealing with all of this. I think I am doing pretty good though, trying to remain very strong so that Max can feel strong too. It's so nice to feel him kicking in there.. it's almost like he is trying to reassure me that he will fight. David and I are going to Ky this weekend, which will be good. I am actually planning to record a Christmas CD to try to take donations for to help offset some of our medical bills. I think I will really enjoy this as it is something I have been talking about doing for a few years. I'll let everyone know when it is done!! Here's to hoping this week goes by fast...

9 comments:

Brian and Cassi Reed said...

I just found your blog through baby Nayeli's blog. I am a recent CDH mom as well. Feel free to e-mail me if you have any questions, as I am a nurse and can help with some medical problems. You can also visit my website if you wish.

If it is okay, I will add your blog to mine, to help bring you even more support.

Hope all is well as can be.

Angel Elli's Mom Cassi
www.babygirlreed2be.blogspot.com

Amber said...

That is a really good sign that they were able to tell Maxton has lung tissue on both sides!

alway in my thoughts and prayers

Amber

PJ said...

Hey you two! Just got on to this blog. Thanks for the updates.
I won't need to get info second hand. Grateful to hear you'll be in this weekend. Janetta sez hi! Maxton sounds like a fighter. Mom and baby will have all the more of a special bond as well as Daddy & Mommy with each other:)
Our prayers & encouragment to you all. Grace- PJ

Amy AKA "Baba" said...

Keeping you guys in our continued thoughts. It can be such a struggle mentally to be joyous for your baby inside of you and so fearful at the same time.

It is hard to say Goodbye to those who offered so much support and comfort. I'm sure you will find similar support in others at Vanderbilt as time goes on.

Wishing you peace...

Amy
livianasjourney.blogspot.com

Tracy Meats said...

It looks like the scan went very well. I hope your next appointment at Vanderbilt goes better next time--you don't need to feel uncomfortable at your appointments, for you have other things on your mind. Keep kicking Maxton and many continued prayers that he is getting stronger everday. The Christmas CD sounds like a great idea--best of luck with that.

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

Fer said...

I agree with Tracy, the scan sounds good and I really hope next appt. and Vandy goes smoothly. Keeping Max in my prayers.
Fer
CHERUBS Mexican Rep.

CDHi Admin said...

Continued prayers for you and little cherub, Maxton! Let us know how we can help you!

Liz Rich said...

I found you through Baby Claire--we're in Birmingham, AL--my son just turned 1 year--let us know if you have any questions!
Liz
Mom to Par (LCDH 11/1/07)
lizsrich@gmail.com
www.familyofriches.blogspot.com

Hope for congenital diaphragmatic hernia said...

I am so sorry to hear your son was diagnosed with cdh. Just know that he has a much better chance of survival just beccause you know before hand. My daughter was born 8-06 with LCDH she spent 47 days in the NICU, She was a normal 2 year old until a little over 5 weeks ago. She reherniated and we are back to square one. This birth defect is a beast. I will keep you in our prayers. To read Ava's story avaslifewithcdh.blogspot.com I'm here if you need me. Your son will be a fighter no doubt. Again I am so sorry you have to go down this very hard road. You are not alone!

~Terri and Brian