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!

Turning the Corner

It's amazing the difference one week can make in a child. This week Raegan definitely turned a corner. This was my first week back to work. Maybe it was the structure of our routine that did it. Maybe it was time. Whatever it was we hope it continues.

This week Raegan had an awesome week. Her English is coming along very well. The words that she speaks are coming through clearer every day. She continues to say more and more words in their proper context without being prompted: "more", "thank you", "love you", "big hug", "see ya", etc.

Maybe it's taken us longer to truly "fall in love" with Raegan than it did Mackenzie. I don't know. This week she seems sweeter, less defiant. This week she seems to understand more, less aimless. This week she seems happier, less confused and insecure.

I caught myself going back and forth to the nursery at church just to ensure she was OK. I must have been staring in the two-way mirrored window for longer than I realized. One of the deacons came through and said, "Tina, you were standing here staring in at her when i walked by while ago and you're still standing here."

It took me back to a time when Mackenzie had been with us for few short weeks. She had gone to sleep really easily one night and our rocker time was shorter than it normally was. I caught myself going back and forth into her room to look. I wouldn't admit it, but I missed her. Jeffery asked why I kept going back and forth so many times.

Today, as I thought about the number of times I went back and forth to the nursery at church to check on Raegan I realized I had this urge to say the same thing about Raegan that I said to Jeffery that night in response to Mackenzie - "Dear God I love her!"

Two Different Master Pieces

The plates to the right would be a good representation of the difference between our two daughters. These are the two different palates that make up Mackenzie and Raegan. They are so amazingly different.

Mackenzie has a very sweet spirit, to the point it has been commented on by many. She has always been low-maintenance. We take her every where we go, just because we can. She's not shy, but a little reserved and soft spoken. She's all girl -very graceful. She also has all the drama that goes with it. She needs a band-aid for a hang-nail. I could count on one hand the number of time-outs (including those at school) that Mackenzie has had. I know the number of times she has reached #3 and had something taken away has probably been less than ten.

Raegan, on the other hand, is any thing but low-maintenance. Quiet is the last word I would use to describe her. She even shouted out at the preacher this morning in church. (However, she at least responded appropriately.) There is nothing girly about Raegan, although she does like to look pretty. Raegan rolls through the halls at home like the bulls through the streets in Madrid. Nine times out of ten she falls and hits her head. She gets up rubs it takes off again. Raegan has had more time-outs in her three weeks in the US than Mackenzie will see in a lifetime.

Tonight my daughters painted pumpkins. Raegan amazed me with her fine motor skills and her hand/eye coordination. She had a blast, and Mackenzie and I both had a blast watching her. Mackenzie amazed me as she went to "teach" her sister how to paint a pumpkin, always put more paint on Raegan's plate when she put more on her own. She always told Raegan, "Good job, Raegan" even though Raegan's pumpkin looked VERY different than her own.

Our daughter's paint palates may be totally different.....but the finished product on the canvases called Mackenzie and Raegan are both masterpieces.
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Sisters

It is fun, yet odd to watch Mackenzie and Raegan as they figure out their roles as each other's sister. It's a manic relationship. They either have fun to the point of belly-laughing; or struggle with each other to the point of tears.

We pick up Mackenzie in the afternoon at Cornerstone. When Mrs. Mettrick opens the door to help Mackenzie get in Raegan let's out a wail that I'm sure can be heard in the next county.....it almost sounds like "heyyyyy, Kenzeeeeee, my buddeeeeeee". It is so cute. Even Mrs. Mettrick gets a kick out of it.

Mackenzie sometimes struggles being a big sister. It's hard to watch the people who used to think you were the only little girl on the planet suddenly treat you like you're not. Four year olds don't know how to express that kind of hurt. They just say, "my heart is aching", or "my feelings are hurting me." And sometimes the best thing to do is cry with them.

I tried to get a picture of Raegan pouring water over her own head in the bathtub. Every time I picked up the camera, Raegan instantly scooted up toward the front of the tub where Mackenzie was and put her arm around her, as if she knew that was the pose they would strike the rest of their lives.

One day Mackenzie declared that it would be OK if Raegan went back to China. However, that night Raegan had a rough night sleeping and cried out almost as if in terror at least twice during the night. When Mackenzie asked about it the next morning, I said sometimes I think Raegan just gets scared that we're going to leave her. Mackenzie's reaction shocked me when all of a sudden it looked like she would break down and cry and she shook her head and seriously said...."we can't leave her, Mom." We're not going to leave her Mackenzie....we're family....we're all we got.

In so many ways they are exactly like biological siblings.....they love each other and they fight; they have fun with each other, yet there are tears; they are so different, yet both so amazing.

Just goes to show.....there's more than one way God makes a family.

First Week At Daycare

This week Raegan started daycare for 1/2 days. I dreaded Monday as I remembered that first day we took Mackenzie. With Mackenzie, I couldn't stand the thought of taking her one minute sooner than I absolutely had to. So, my first day back to work Mackenzie was introduced to daycare and spent all day there. We both cried all day every day for at least two weeks.

With Raegan I swore I would not put either one of us through that, so I decided to transition for 1/2 days prior to going back. Well, the first day Raegan went I took her to her table where they were serving pancakes for breakfast. We went through our good bye routine (big hug, kisses, love you) and then I mustered up the courage to stand up and walk away. However...I did look back. Although I didn't turn into a pillar of salt my heart did break when I saw this little person walking right behind me. I quickened my step, walked out the door, and shut it behind me. I stood there and listened for tears....that would be my excuse to go running back in. However, the tears never came. I peaked my head around the wall to steal a glance, and there she was.....sitting at the table eating her pancake like she didn't have a care in the world. NOW, what am I supposed to do????

By Thursday I was willing to try to let her stay through nap time. That went great. Few tears right after being placed on the cot. She went right to sleep though, and rolled off the cot twice without even waking up (she is ALL OVER the bed at night). When I walked in that afternoon she was up, sitting with her friends at the table and having snack. I just sat and watched her. She's just so fun to watch.

So....life is really starting to look normal at the Biggs residence again. Still going through some tests and examinations. Those will probably take place over the next several weeks. I'd like to say the medication has helped the giardia....but I changed her clothes at least twice today and three times yesterday.....so that should give you a clue.

Every day makes it seem even more like Raegan has always been here.

It's Positive....No Kidding!

Before we left for China to get Raegan I had read a great deal about the children from Shantou testing positive for an intestinal parasite called giardia. This little nemesis caused all kinds of havoc on these little creatures intestines.....not to mention their diapers. So, when I was preparing to pack for China, I requested treatment for giardia along with the antibiotic and other scripts I was taking to China for Raegan. I was told that giardia is something that the doctor didn't feel comfortable treating until we have a positive test result.

OK.....about 90% of the kids leaving Shantou have come home with a positive test result.....they've been treated....and sometimes it takes more than one treatment to get rid of it. I'm getting ready to go get a child from Shantou....aren't the chances pretty good that she is going to come home and test positive as well. Isn't that enough positive to warrant a script? No.

So....as you know from previous posts....we have been more than certain we've been fighting this little intestinal demon since the day we laid eyes on Raegan Biggs. Considering our appointments wasn't until Tuesday, October 3, I thought I'd try once again to get a script for a treatment for the giardia. Upon calling the doctor she said we'd get a sample when I came in. OK....look....this poor child has some of the most darn awful diarrhea that I've ever seen....to the point that she has been passing blood in her stools. She doesn't feel well, I'm changing her clothes and bathing her about twice a day....and I have another small child I'm concerned about passing this on to. Can't we at least go ahead and test so we can start treatment. Sure...come and get a stool sample kit.

Upon arriving at the office on Friday morning I open up the plastic hospital bag that they've given me. This bag is awful big to contain a couple small vials for poop samples. Upon opening the bag I see they've included a "bonnet" for the toilet. Pardon me....what exactly am I supposed to do with this my daughter is not potty-trained (I wanted to say - maybe you missed the part that she's only two and came from a Chinese orphanage - but I didn't)??? Well....it's imperative that the stool sample not touch the diaper as it will contaminate the sample. Oh...that should be no problem....I'll just scrape a sample off what goes up her back and another one from what runs down her legs!! We suggest you line the diaper with Saran wrap if she can't sit on the toilet. Why is there two sets of vials. We'll need more than one days sample. You'll need to take a sample today and then bring in another sample three days later. Yea...right.

Have you ever tried lining a diaper with Saran Wrap? Better yet.....you ever seen what happens when you finally get a diaper lined with Saran Wrap? Oh....believe me....there is no problem with the "specimen" hitting the diaper. That diaper was as clean as a whistle. I only wish I could say the same for Raegan's car seat.

Finally by Monday morning I was determined we were going to have success. Raegan was sitting at the counter eating breakfast when I recognized that all too familiar and oh so pitiful face. I immediately snatched her up while grabbing the "bonnet" from the plastic bag. With Raegan under one arm and the bonnet in my other hand I lifted the toilet seat, put the bonnet on the lid, yanked down Raegan's pants and diaper, and placed her on the pot. It was only after I got her on the pot that I checked to make sure I had done all this in time. YES!!! No mess!! And being the over-achieving child Raegan is she proceeded to give me one heck of a sample....all of which was nice and tidy in the bonnet without fear of any "contamination" by a diaper. YAY Raegan!!!

It's when you're sitting in the bathroom floor with a small vile with a little built-in "pooper scooper" in the lid and your spooning "specimen" in the vial and you're actually happy about it you realize you have lost every shred of dignity you once had. Never-the-less, I scooped until I had two vials to take to the lab. YAY Mommy!!

Now, in case you doubt how bright our child might be.....Jeffery brought the little potty home from the storage building after I told him about my little episode. We placed it in the bathroom and showed it to Raegan. In the past two days Raegan has gone pee in the potty at least three times each day. Now....is she good, or WHAT???

Today....we got a "positive" read on our samples. Raegan has tested positive for giardia. NO KIDDING! Finally....we can start treating this poor little girl and hopefully get her well so she can feel good and be 100%. Oh my gosh......I'm not sure I can keep up with her 100%!!!!!

Thank God for Grandma's

This past weekend Mackenzie and Raegan got to enjoy two of their grandma's - MawMaw Judy (Biggs) and MawMaw Mac (Cornelius). It was so great to have them both here and to get to watch them experience Raegan for the first time.

MawMaw Judy came on Thursday afternoon just in time to go with me to pick up Mackenzie at Cornerstone. Mackenzie was so excited to see MawMaw in the car, but was even more excited that MawMaw got to see her new school.

Raegan, just like her big sister before her, didn't take long to get comfortable in MawMaw's lap with a good book. That was the most I've seen that child sit still since we've had her. Mackenzie has always loved reading with MawMaw and it looks like Raegan will, too.

MawMaw left on Friday but not before she paid a visit to Mackenzie at Montessori. Mackenzie was thrilled that she got to introduce MawMaw Judy to all of her classmates at Montessori. MawMaw then went with Raegan and I to take Mackenzie to Cornerstone where Mackenzie said a sad goodbye to MawMaw Judy. Although she was worried about MaMa Cat and Aunt Bec without MawMaw Judy, she was sad to see her go.

Later Friday night MawMaw Mac came in with Uncle Bud, Aunt Jan, and Lexis. Once again Mackenzie was thrilled and Raegan got thrilled just because everyone was so excited. Just like her big sister....Raegan went straight to Bud. Lexis was fascinated with Raegan, much like she was Mackenzie when she arrived. Mackenzie loves playing with Lexis when she's here. They always have a good time.

It's always nice to have company, but it's especially nice when company is your Grandma. Aren't they wonderful!