Raegan's Heart

On Monday Raegan visited her pediatric cardiologist at Children's Hospital in Peoria to ensure the surgery performed to patch Raegan's VSD in China was successful.

I was a little bit nervous about it even though you can plainly tell she is the specimen of health. I would look back at Raegan in her carseat. She'd just grin real big as if to say, "relax, Mom, everything is going to be OK."

We arrived around 9:45 and began with filling out the normal paperwork that isn't so normal for us since we know no family medical history for the girls.

After the normal height, weight (she now weighs 29 pounds), BP, pulse, O2 and other vitals, it was on to get the first EKG. She was a little nervous as the tech hooked up all the wires. But, she laid very still and we were able to get a good reading very quickly. We then began the long wait for Dr. Schneider.

Dr. Schneider is fantastic!! He immediately set out to make Raegan comfortable. After going through all the tests and then waiting she was a little edgy, but it didn't take her long to warm up to him. He went over her vitals and assured us that right now her heart "feels really good." He felt like he had heard a little bit of turbulence in her heart. He commented that her chest x-ray we had taken with us had indicated a small piece of tissue at the bottom of her VSD patch. He felt like that could be causing it and we needed to watch that as that type of membrane has a tendency to grow.

He asked about her Turner's and whether we had confirmed that. We stated we had...and that we realized her VSD was probably a result of her syndrome. Dr. Schneider then indicated that Raegan's VSD was unusual for Turner's as it was on the right side, and with Turner's the congenital heart disease is predominantly (although not always) on the left side. He then indicated a couple of other heart defects that are common with Turner's. Dr. Schneider took the time to answer my MANY questions and then he commented, "I know you've been here quite a while this morning, but I'd really like to do an echocardiagram on Raegan's heart just to see if there is anything as a result of her syndrome we need to monitor. Oh boy...here comes the next surprise. By this time is was almost 11:30, but we wanted to know everything before we left there so we agreed.

Off to another room we went. Poor Raegan. As we laid her down on the table you could see the fear on her face. She looked up at me and put her fingers near her mouth as if to ask "is it OK if I do this even though I'm not taking a nap?" When I shook my head yes her fingers immediately went in her mouth and her other hand grabbed my hand. She turned her head so she didn't have to look at the people or the machinery in the room. She laid that way for almost 20 minutes without shedding a tear.

The echocardiagram confirmed Dr. Schneider's suspicions. Raegan has a bicuspid aortic valve (meaning there are two flaps as opposed to three) and she has a mild coarctation of the aorta (meaning the aorta begins to narrow in size as it leaves the heart). He also confirmed that the membrane at the bottom of her patch is causing the turbulence that he heard.

None of these things are causing Raegan any problems whatsoever at this time. And, since we know about them we can now schedule our follow ups to monitor them. We will go back every six months to ensure they do not become problematic. If they begin to impact her Dr. Schneider says, "we'll just fix them." He told us these situations are so mild right now that he wouldn't let anyone near her heart with a surgical knife at this time.

Once again we feel like God has really watched out for Raegan by allowing us to know something very early that could easily have gone undetected until it did cause a problem. He has also given us a great doctor that we totally trust with our daughter's heart health. Raegan obviously has a special place in God's heart (the Bible tells us all orphans do) as he sure is watching over her very closely.

Next: We go to the pediatric endocrinologist on December 20 to determine our action plan for hormone treatments for Raegan's Turner's.

Thank you for your prayers!!! They are working!!!

Raegan's First FATD Shopping Trip

My sister, Janice, and I started a tradition several years ago of meeting in St. Louis and shopping at St. Claire Square (O'Fallon) and St. Louis Galleria Mall for the day. It's been a great tradition. We were able to get a great deal of shopping done and there were years that we almost closed down the malls before heading on our long drives to our respective homes.

A couple of years ago we began to include Lexis and Mackenzie and the trip changed considerable. It was no longer about shopping, it was about just spending the day together, enjoy our girls together, and passing on a tradition of starting off the season together.

We then began such traditions as watching the Alexander Dance Company perform the Nutcracker Ballet in the atrium at Galleria Mall and building the particular year's Christmas stuffed animal at Build-A-Bear Workshop.

This year was Raegan's first FATD shopping trip. Although I wasn't sure what to expect I did anticipate (and prepared myself to be OK with) this being the shortest shopping trip in history. However.....Raegan enjoyed the day as much as anyone. It turned out to be a great day after all. No, we didn't get much shopping done. But...we did carry on the tradition of our day...and Raegan got to be part of some new traditions she can call her own.

It is officially the Christmas season at the Biggs house!

Up To the Challenge

To say the last several weeks have been busy would be an understatement. I never imagined the impact one small (okay, somewhat small) child could have on a household just from a laundry, dishes, groceries, and schedule perspective. I once prided myself on being organized to the point of being anal. I am sorry to say I am now disorganized to the point of being clueless. I am determined to once again claim my organized self. I intend to plant my flag high on the mountain of anality once I scale it again.

We've also had other mountains placed in our path in the past several weeks. Genetic testing has revealed that Raegan is Turner's Syndrome. We have become quite educated on this syndrome. The greatest and most likely impacts will be to her physical height and possibly to her reproductive system. She will have to undergo growth hormones and possibly estrogen treatments. It is likely that she will be infertile. There are also other small risks with this syndrome. We are getting Raegan to Children's Hospital in Peoria for further evaluations over the next several weeks to determine the best course of treatment for Raegan's development.

We thank God that we have been given the ability to know about this so early so we can begin treatment right away. Yes, this will be something Raegan will have to deal with the rest of her life. Are we happy about it, no. Could it be a whole lot worse - absolutely! Part of me wonders why she has to deal with anything more. Hasn't she had enough? And then I realize - it's because she can. After watching this child's spirit for the past 60 days I can assure you - God knows she's up to the challenge. Go get 'em Raegan!