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-   -   Maddie's story... (http://www.justmommies.com/forums/f783-children-heart-conditions/1431323-maddie-s-story.html)

frugality=reality February 10th, 2009 09:22 AM

Madeline was born on Valentine's Day 2006 after an excruciating labor. I had gone into labor on Monday night (the 13th) at about 6:30 or 7. We went to the hospital when the contractions were ranging from 5-7 minutes, since we live over an hour away. It was about 1 AM. I was dilated to 4, so they admitted me. She wasn't born until Tuesday night at 11:37 (after my being hung up on 4cm with hard contractions for HOURS! :wacko: )

She was well worth it. All 6 lb. 14 perfect ounces of her. She was declared perfectly healthy, and we took her home Thursday night.

Fast forward to January of 2007. She was getting her iron checked at our WIC appointment. It was 19.2. They referred us to the doctor, who redid the test and a CBC. She referred us to a Hematologist-the appointment was on February 2, 2007. She referred us to the cardiologist-immediately. It was discovered that she had CHD through an echo. They could not tell us a prognosis at that time-simply that it was bad and she needed to have a cardiac cathetarization in order to determine what to do. She was in congestive heart failure. It was no cold. It was not due to teething. She had been dying right before our eyes.

Tetralogy of fallot with pulmonary atresia. What the heck is that, anyway? Not that I remembered what it was called. I was in a fog. I didn't have a clue what the doctor had said other than that it was serious. It was nothing we did. Something was missing. I couldn't remember what. I didn't even remember the Tetralogy of fallot with pulmonary atresia. That came a couple days later when we met with the doctor that was going to do the cath.

February 7, 2007, she had her cath. Afterward, we were told how severe it was, and to have a big, happy first birthday with her because they weren't too sure of any outcomes. They came straight out and said we'll want the memory as it may be the only one she had...

We were devastated and mostly just walked around like zombies. How could that happen? How could our daughter that was declared perfectly healthy be SO SICK? How could no one have noticed that she was blue? HOW, HOW, HOW does that happen?


We did have a big birthday celebration. My family from Michigan came down (many of them, anyway). It was amazing the support we received during that time.

On February 28, 2007, we kissed our little girl goodbye-not knowing if we'd ever see her again. It was the hardest goodbye of my life. We were expecting several hours of surgery-and we were expecting that it would be the first of a series of corrective surgeries due to the severe nature of [specifically] her PA.

She was out of surgery at about 1 PM, though. And they were testing some pressures at that time. We got to see her when she got to the Pediatric Cardiology ICU, but we couldn't touch her or talk to her. It was horrible-seeing her there with that big incision on her chest, and all those tubes. It was horrible. But she was alive, and for that, we rejoiced.

The next day, we got to see her and talk to her and touch her. We still couldn't hold her though...

I got go hold her [FINALLY] on the third or fourth day post op. She started getting a little perkier, and then on March 7, she was sent home. She's an amazing little girl....

They did a total repair in one surgery. Her surgeon is truly amazing. She has to go to checkups a few times a year, has an annual lung perfusion scan, has an annual cathetarization... but she's alive. And for that, we rejoice. Daily. :)


http://i8.photobucket.com/albums/a6/...e/PICT0037.jpg

http://i8.photobucket.com/albums/a6/...e/c8a95196.jpg

http://i8.photobucket.com/albums/a6/...e/4c1e72f9.jpg

http://i8.photobucket.com/albums/a6/...edCutiePie.jpg

http://i8.photobucket.com/albums/a6/...e/PICT0001.jpg

First Christmas:
http://i8.photobucket.com/albums/a6/...PICT0007-2.jpg

After her first cath:
http://i8.photobucket.com/albums/a6/...PICT0010-2.jpg

Her first birthday:
http://i8.photobucket.com/albums/a6/...e/100_1750.jpg
http://i8.photobucket.com/albums/a6/...PICT0010-4.jpg
http://i8.photobucket.com/albums/a6/...e/PICT0019.jpg
(we rented a gymnasium)

First trip to the beach-the weekend before her surgery:
http://i8.photobucket.com/albums/a6/...PICT0025-1.jpg


Immediately post-op (WARNING: graphic) http://i8.photobucket.com/albums/a6/cbms/B.../PICT0016-3.jpg

2nd day: http://i8.photobucket.com/albums/a6/cbms/B.../PICT0005-5.jpg

feeling a little better: http://i8.photobucket.com/albums/a6/cbms/B.../PICT0001-5.jpg

Getting our exit echocardiogram! http://i8.photobucket.com/albums/a6/cbms/B...PICT0002-10.jpg


About a month after surgery... playing in the dirt. :)
http://i8.photobucket.com/albums/a6/...PICT0062-1.jpg

And Christmas 2008:
http://i8.photobucket.com/albums/a6/cbms/DSC02427.jpg

Gettin' all grown up. :inlove:

stacyp February 10th, 2009 01:16 PM

What a fighter! She is such a little doll!


Thank goodness it was caught & corrected. But I can't even fathom how frightened you were. With Luke, we knew at birth he had a VSD. You were given a clean bill of health at the beginning. I am so glad she is doing so well.

(.Y.)mom2dd(.Y.) February 13th, 2009 08:49 PM

What an amazing story to read and the pictures? :cry: It's all so beautiful to read!

~Nik*Re~ February 14th, 2009 04:07 PM

Just lurking, wanted to say what a beautiful little fighter you have!

HAPPY 3RD BIRTHDAY MADDIE!! WTG BIG GIRL!!!!


http://i266.photobucket.com/albums/i...u/birthday.jpg

~*Kixs*~ February 14th, 2009 04:19 PM

God love her! What a little fighter. I adore the pic of her post op sucking her thumb :wub: Even through everything she is still just a prefect little love.

mama2jude&rogen February 14th, 2009 05:49 PM

Thank you for sharing her story with us! She's a fighter!

Happy Birthday Maddie!!!

Gina1978 February 15th, 2009 08:06 AM

Popping in from the April 08 PR here :smile:

Wow! She is such a BEAUTIFUL little girl,and so brave! She is a true fighter,and you are an amazing mom!! Iv seen you around lots of times,and Iv always loved your tandem nursing pics (I think they´re absolutly amazing)..I had no idea there was such an amazing story behind it all :heart:
Happy birthday (although a little late) Maddie!!! :cheer:


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