It's Her Life

Thanks so much for your feedback. I appreciate everyone who commented on my last post. Honestly, I am so relieved to know that I am not alone in the way I am feeling. The post on Teri's blog had me feeling so many different emotions, I honestly don't know where to start. I know I will be echoing a lot of what you sweet ladies said. First let me say that I truly enjoy reading the Inspiring Hearts blog. It gives me hope and insight into what an adult with CHD experiences and feels. And I sincerely appreciate her blogging for this reason.

However, after reading this particular post and then the comments, I felt pretty angry. How dare anyone blame us as heart parents for exploiting our precious children! Obviously, we love our children and we would never do anything intentionally to harm them. (As Katie said, we want to protect our precious heart babies even more so.) In my opinion, its perfectly natural and normal for us as parents to show off our children. I'm sure most of you would agree. Even if you don't have a child with a heart defect, you are going to take pictures (and probably naked ones) when they are little. Why should we not be able to take pictures of our childrens' scars? 

This brings me to another point. Teri said she would have been devastated if pictures of her had been posted online. A couple of things here. First of all, it is true: children are mean. We as parents would never, ever want to see our child being made fun of. It does hurt me to think of the possibility that someone would make fun of my precious babies. But children with and without various disabilities are made fun of all the time. Should that stop me from sharing our journey with others? That some possibility down the road, some middle school child is going to look up Emma Kate online and show this tiny, faded scar to others? If someone wants to make fun of my child as badly as this, then it is going to happen, regardless of what I post online.

Teri mentions that her mother did not take any pictures of her while she was in the hospital. I wonder why? Our childrens' scars, their heart defects, it is part of who they are. Personally, I want to document Emma Kate's life, scars and all. Of course, I want her to be proud of herself, to see how strong she is and what she's been through. That is her story; it isn't something she should have to hide from. Not only that, we live in a generation that is far different than it was in 1978. The internet is part of life, it's how we connect with one another. It is how all of you heart parents and I have connected. And it has also been a source of inspiration to others going through similar situations. If you read my comments, Crystal in IL said that, "We as a heart community need to see the reality of the fall and miracles that can and do happen. It reminds us there is always hope." I really appreciated reading that, Crystal. My prayer is that one day Emma Kate will see how her life has touched others and that she has given  people hope.

That being said, if Emma Kate comes to me one day and says, "Mom, I'm don't want to share my scars with the whole world," I think I will be able to appreciate that. And by all means, I will remove anything that she wants me to. This has definitely been a tough journey, and its only been 18 months. I can only imagine what life will hold.

It is interesting hearing from an adult CHDer's perspective. After really thinking it over, I can only come to the conclusion that this is just her opinion. (Even though she said everyone she spoke to agreed with her). Perhaps it isn't right for her personally to share her scars. Maybe it never has been. She has given us heart parents her opinion on what we should do to possibly protect our children from further hurt down the road. I appreciate her concern. However, I do plan to continue documenting Emma Kate's journey and our entire family's journey through life. I do not have a CHD. My daughter does. It is her life and it is mine. 

Attention Heart Parents!

I just read a really interesting blog post. Quite honestly, I'm not sure what I think about it; I'm definitely having some mixed emotions. I really want to process what I've read and then maybe write a post on my feelings about it. I'd love for you to go read it and give me your take on it. Thanks!

My Ministry

I decided last-minute that I would participate in Show Us Your Life from Kelly's Korner.

If you are not familiar with Show Us Your Life, here's a quick explaination. Each week on Kelly's Korner blog, she invites readers to add a link to their own blog to show others different aspects of their lives. This week the topic is Show Us Your Ministry. 

If you are visiting from Kelly's Korner, welcome to Emma Kate's Heart Journey! My daughter, Emma Kate was born in August of 2008 with a congenital heart defect called Hypoplastic Left Heart Syndrome. This means that the left side of her heart is severely underdeveloped and does not function.  Basically, she has half of a heart. She had two open heart surgeries before six months of age. She has also had one other surgery to correct a complication. She is a living, breathing, thriving miracle! I am so thrilled to share her story with others and give others hope!

We found out at my 20 week ultrasound (or thereabouts) that her heart was not normal and that she would need surgery to survive when she was born. Often times, when families are given this diagnosis for their unborn child, they are given the option to terminate the pregnancy, or to choose "comfort care," which means to let the baby live for as long as they would without surgery. These babies don't usually live longer than a few days to a week. 

I am so thankful that we were not offered these options and that we gave our daughter a chance at life! I hope Emma Kate's story can encourage any family going through this type of situation. Congenital Heart Defects are common, about 1 in every 100 children will be born with a heart defect of some kind. If you are going through something like this, please feel free to contact me!

18 Months Old!

Yay, my sweet girl! You made it to eighteen months! What a big girl you are.

Playing in the Georgia snow. I totally doubted the weather man, but we got a few inches, at least!

Emma Kate is officially eighteen months old today. She's such a joy in our lives and she's learning more every day. It is so fun to watch her just live life. I am so thankful for the blessing of her and don't take one day with her for granted. Thank you, God, for our precious, happy, funny, beautiful, THRIVING Emma Kate!

Let me first say that this child does not stop. She is on the go from the time she wakes up in the morning until she goes to bed at night. She will not sit still for a movie or even a book. She's got things to do! Lately I feel like EK's vocabulary has taken a big leap. She's saying lots of little words and imitating pretty much everything her big sister says and does. Right now, The Little Mermaid is a pretty popular movie/character at our house for Anna Brooke, so I hear a lot of Part of Your World being sung by both girls. EK doesn't know all of the words to the song, but it is so precious to hear her say some words like, "world," "sea," and "Ariel." 

She absolutely adores babies and baby dolls. In the girls' playroom, we have a big bin full of baby dolls which EK will go over to, pick one out and "wock" (rock), "huck" (hug), and put to "sweep" (sleep). It warms my heart when I see her loving on her dolls. She is such a loving little girl, and I know she's going to be a wonderful big sister! I can't wait to teach her how to love her little brother or sister. Whenever we are out somewhere and she hears a baby crying or sees a child, she gets so excited and says, "bay-bee!!" 

Emma Kate can point to and say most of her body parts, especially ones on her face. Like, nose, eyes, ears, hair, mouth, teeth. Speaking of teeth, she's finally getting some in. For the longest time she's only had her two bottom front teeth. Right now, she is getting in about eight teeth, from what I can see. Poor thing. I am happy for her, though, since these teeth will make it a lot easier for her to chew up food. 

We have finally weaned EK from the bottle. I was just giving it to her at night and sometimes before her afternoon nap, and it was really the only way that she would drink milk. For that reason, I was really hesitant to take it away from her. However, she has done awesome since I took it away for good. The first few times I didn't give her a bottle before bed, I'd sit down to rock her, give her the paci and I'd hear, "bob-ble?" It broke my heart. It took her a bit longer to fall asleep those nights, too. I have found that giving her a snack before bed helps her a lot. She's also drinking milk from a cup now, too. Most of the time, I try to add some Instant Breakfast powder to it. She could still use the extra calories. She won't take Pediasure at all, so I have found that this is a good alternative. 

Right now, EK weighs about 18 pound, 12 ounces. She's still small, but she is gaining weight. That is all I am concerned with. She has a ton of energy during the day, so I know she's getting enough calories. Right now she's receiving Synagis once a month, I think March will be her last injection for the season. We have a home care nurse come to the house to give her the shots, which is nice. She gets one in each leg and I am sure they are painful. But so far, she hasn't had any major illnesses, so I am thankful that they seem to be working.

EK's next cardiology appointment isn't until March 16th. She's being seen every three months and every six months she has an echo done. At our last appointment back in December, Dr. Cardis informed us that her heart looked really good. Her heart function is great! In fact, he said that Emma Kate is "what we want our HLHS patients to look like" and that "she is best case scenario." That was a good feeling. We have every reason to hope for her!

Valentine's Day Craft & "What does CHD mean?"

Since this is Anna Brooke's first year being in school, I wanted to do something really fun for her first Valentine's Day. I remember getting really excited about exchanging Valentines with my classmates in elementary school, and I hoped that AB would be just as excited to share something fun she helped me make with her friends. My awesome friend, Megan (who, by the way, is the most creative mom on the planet) had this idea and made heart magnets for her daughter's class last year. I thought it was so cute and had to steal her idea. Imitation is the most sincere form of flattery, you know. She always comes up with the greatest ideas!

Here's the Princess the night before her Valentine's Day party. She's wearing what she calls her "Lady and Champ" nightgown. I've thought about correcting her and saying, "Actually, that's the Lady and the Tramp." But I can just hear her asking, "What's a tramp, mama?" Yeah, I think I'll avoid that conversation altogether.

We cut out letters from magazines to spell out the names of the children in her class. We glued them on a painted wooden heart and mod-podged the letters on so they would stick. Then we put sticky magnets on the back. Super-cute but easy!

After she returned home from school with a bag full of goodies and lovely Valentine cards, AB released some sugar-fueled energy by jumping on the bed. Fun!

_________

On to another topic, which I wanted to discuss immediately after it happened, but I decided against it. I took AB to school last Tuesday (February 9) and was given a packet of information about raising funds and awareness for Pediatric Cancer. I came home and read a letter included in the packet, learning about a little boy who was diagnosed with leukemia at age two and how he is now in remission. I pulled out a little flattened cardboard box which was supposed to be used to collect coins to donate for cancer research. All of this got me thinking.  I found it disturbing that during CHD Awareness week, I was not given any information about raising awareness for CHDs. Instead, I was given information about pediatric cancer.

Please don't misunderstand me. I think it is absolutely wonderful that parents of children with cancer are active in educating others and raising funds for cancer research. It made me sad that people seemed  completely unaware of CHD Awareness week during CHD Awareness week. It really bothered me that during last week, I didn't do more to raise awareness for something that has deeply effected me and my family. Why didn't I go to the director of AB's school and say, "Look, this Congenital Heart Defect awareness week. Would you mind passing out this packet of information to your students?" How hard would that have been? Why don't we "heart parents" do what this "cancer mom" did for her son? It is so crazy to me that CHDs are so prevalent and affect far more children than cancer does, yet there is far less funding and research for heart defects.

I made it a point all last week to wear my CHD Awareness Week stickers and to get the word out about CHDs. I found it weird that at my OB visit last week, three nurses asked me what my sticker meant. "What's CHD?" they asked.

Three. Nurses. In the OBs office. Really?!

I vowed right then and there to do more for CHD awareness. Next year, I'd really like to get together with some other local heart parents and figure out ways to raise awareness in the community. I'm still brainstorming ideas, but if you have any on how your community celebrates CHD Awareness week, I'd love to hear them!

CHD Awareness Week 2010

Snow Days

It is snowing! We are currently visiting my parents who live in northern Virginia. So far, we've gotten about four inches, but we are no where near done yet. This is a big deal, especially to the girls because it is the first time ever that they've played in snow.

Even though it took Brooks an extra day to drive up because of the terrible road conditions, the snow has been a treat to us here. On Saturday when it started snowing, I put out a metal bowl to collect snow in. A few hours later, when it was full, the girls devoured it. I know that sounds weird, but they did. They actually thought it was the coolest thing ever.

Anna Brooke has had the most fun out of all of us playing outside in the cold! On Saturday we borrowed the neighbors snow clothes (we don't need much of that living in the South). Emma Kate was given a couple of little one-piece snow outfits, circa 1983. She pretty much looked hilarious in her Eskimo get-up. Her cheeks have gotten so red and dried out from this winter weather, plus she gets cold a little more easily than her big sister, so she didn't stay out too long on Saturday. 

On Monday, when Daddy finally got here, we went out some more. This time, for a bit longer. It wasn't actually snowing while we were out playing, so that made it a bit more tolerable, especially for Emma Kate. She would not let me pick her up for very long. She kept saying "walk! walk!" when I held her. She really enjoyed attempting to trek through the snowy terrain of the front yard.

We've been having a great time! It's snowing tonight, and they expect another 3-6 inches. What are we going to do with ourselves!!?

 

Yes, she's riding the trike in the snow. 

Those poor red cheeks!

  

snow angel!

... and on Sunday

 

The outfit was a bit cuter the second day we went out.

  

  

Please don't hold me, Daddy! I want to walk!

  

Snowball fight with Nana!