Tuesday, May 24, 2011

My Little Princess!

Since Abby was 8 weeks old, we've known that she had a heart issue.  She was diagnosed with an ASD (Atrial Septal Defect) which is basically a hole in her heart and she also had Pulmonic Stynosis which is a narrow valve.  The Pulmonic Stynosis is now gone as her valve has grown with her.  Every baby is born with a hole in their heart, but usually it closes on its own, hers has not.  We were told that if it didn't close by age 3, in all likelihood it would need to be closed for her.

It definately has not slowed her down, she has absolutely no symptoms whatsoever!  We were told by our cardiologist a year or so ago that once the hole was closed we would be amazed at how much more energy she has.  Well, anyone that knows Abby knows there is no lack of energy or spunk in that girl.  And, for those that don't know her well, think Tazmanian Devil - a sweet one, but that's about the energy level she has.

We are so lucky to have a wonderful Pediatric Cardiologist right here in Green Bay by the name of Dr. Cousineau.  Abby seems him on a yearly basis and they perform an echocardiogram each year - she thinks they want to see what she had for breakfast!  At her 3 year visit, it had not closed and he sent all her test results to Children's Hospital in Milwaukee and they got back to him indicating that she would be a candidate for a non-surgical repair but they wanted her to gain some weight.

At her 4 year visit, they performed the echo in addition to an x-ray and EKG and sent them back down to Children's Hospital.  Unfortunately, they now feel that it cannot be closed non-surgically because there is not enough wall to attach the device to and because the right side of her heart is slightly enlarged.

After the initial shock I talked to a friend who is a Pedicatric Intensive Care Doctor and he explained that this surgery is more common than you'd know and that she would be just fine!  Once we had accepted the surgery all the parental concerns came about - would she be scared?  Could we stay with her?  Would she be in pain?  What would her recovery be like?  I have to say that every concern we had, Children's Hospital had an answer to - it's almost like that hospital was designed by Moms!  Our wondeful family and friends also put us in touch with some other people whose children had gone thru heart surgery for much more severe issues.   The common theme seemed to be that we would be in the best place with the best doctors and have the best care.  Everyone raved about hospital and the care that their children received.  I heard over and over again that they do not allow your child to be in pain - something we desperately needed to hear.

So, here we are..................we have a consultation with the surgeon next Tuesday, May 31 at 10.  Next Thursday at 10am, she has some preoperative testing  and at 7:30 on Friday morning she will have surgery.  The surgery is expected to last approximately 4 hours, only 45 minutes of it will actually be repairing the hole and they assign 1 nurse to every 2 families and all she does is watches the surgery's on a monitor and comes out and updates you each step of the way. 

They said our stay will be 3-5 nights and we can stay with her the whole time so with any luck we will be home early the following week.

We're still trying to figure out what, how and when to tell the kids what is going on but we've decided that we are going to have a really fun Memorial Day weekend and we'll deal with it all on Tuesday.
Logan will be staying with his grandparents and will be very busy while we're gone - hopefully he won't be too upset - as much as those two can fight, he's very protective of his little sister and has never really been away from her.

Please keep them both in your thoughts and prayers and we will add updates as we have something to update.

Feel free to post comments on here with little notes to Abby, she'll love it!

With Love,

The Kawulas; Pat, Lisa, Logan and Abby