Tuesday, August 24, 2010

EK's Birthday Party

Fun new toy!

Lots of fun playing with balloons!

Dressed up in her new Tinkerbell costume playing the drums with her friend.

Getting ready for cake.

Getting shy when everyone was singing Happy Birthday to her.

Yay!

Tuesday, June 29, 2010

Pray for Baby Luke

I wanted to ask you all to pray for a special little boy. As of right now, he has not been born. His mommy, Kristin and I have been emailing back and forth for the past couple of months. When she first contacted me, she and her husband had just found out that their unborn baby boy, who they are naming Luke, has a special heart. Formally, he is diagnosed with Hypoplastic Left Heart Syndrome, just like Emma Kate. However, there have been some interesting changes in his development as he has gotten bigger and ready for this world. According to their blog posts, Luke's left ventricle has significantly grown larger since he was initially diagnosed and his aorta appears to be of normal size! What a miracle! Of course, once Luke is born and has an echo, the doctors will know more. I know God is working in the lives of this family and I wanted to ask you all to please keep them in your prayers as they begin this journey. I personally believe that God is a God of miracles and He has the power to heal. I also believe in the power of prayer and that He can and does intercede in our lives. No matter what His plan is for Luke, I know God can work through Luke for His glory. 

Kristin is going to be induced this morning. You can keep up with their story by visiting their blog. Thank you, friends! 

Tuesday, June 22, 2010

Cardiology Visit

Emma Kate had a visit with her cardiologist today. She sees him every three months and has an ECHO done every six. This visit was an ECHO visit, which means the last time she had one done she was 16 months old. I remember she cried and screamed a lot during that one, so I prepared myself to expect the same thing for today's appointment. 

Boy, was I surprised! Emma Kate did absolutely wonderful during the EKG! She helped put the "stickers" on her chest and played really sweetly with the Wiggles guitar they usually use to distract her. I'm pretty sure they got a perfectly clear reading of her heart activity. Her sats were between 87 and 89! She was weighed at 20 pounds, 1 ounce.

 


After her EKG, we had a short visit with Dr. Cardis and then it was time for her ECHO. Again, I had prepared myself for a lot of wiggling and crying. But Emma Kate was perfect! I was very pleasantly surprised! The technician commented several times about how great she was doing and how she was able to get such clear pictures. My sweet big girl!


After her ECHO was finished, Dr. Cardis took a look at the pictures and told us that every part of her heart looked great! He went into a lot of detail about each part of her unique heart and said that she is one of the best cases that he follows! That news made Brooks and I tear up a little bit. I was a little nervous before this visit, only because I'm always prepared for hard news. And knowing that she is almost two (and lots of HLHS kids have the Fontan around this age), we wanted to be mentally prepared. However, we were told that potentially she could hold off on having her Fontan done for at least one to two more years, depending on her heart function, energy level and oxygen sats! Praise the Lord! We are so thankful for this news!


At the end of our visit, Emma Kate kept saying, "Doctor. 'Point-ment. Doctor Caw-dis. See you soon. 'Morrow." Ah, she makes me smile. I love that kid and I could not be happier with how today went.

Thursday, April 29, 2010

I never thought I'd forget...

... but I almost did. Two years ago, we were shaken. It's so normal to us now; how could we ever not know about this world of heart defects?

We learned about Emma Kate's heart on April 22, 2008. Of course, I never thought I would ever miss that anniversary.  I also never imagined anything would be wrong with any of my babies.  So it came as a complete shock to us when we were told that the left side of Emma Kate's heart hadn't fully developed. My memories of that day and the days following are very dark. There was so much uncertainty in our baby's future and it was very scary.

Have you ever been in a darkroom? I don't mean a room that doesn't have any lights on. I mean a photography darkroom. If you haven't, it's kind of creepy when you first walk in. Your eyes are used to seeing everything that is around you, and then when you go behind the door or the curtain into the darkroom, you can't see anything at all for several seconds. You have to be really careful because you aren't sure of your surroundings. You're not sure where to go or what to do. Slowly, you can see a faint glow and you feel a little better. Your eyes adjust gradually and you can make your way quite easily around the room, even though it isn't your comfortable norm. This is how I kind of relate my experience with learning about the "heart world."

We were taken to a very dark place that day. It didn't feel normal or right at first, and it was really frightening. There were so many unknowns. But slowly, we adjusted to our "new normal." We adapted to things. We learned our way around a little bit, we read and learned lots of information about this new place we knew nothing of before that day. Now, I feel that I can navigate this world a bit more easily. There are still a few unknowns and uncertainties, and having half of a heart isn't something I would ever choose for my child. But it has become our new normal. We know what to expect of our daughter. We know what is normal for her, and most of the time, we know when something isn't quite right.

Quite honestly, I think the reason I forgot our "when-we-learned-about-HLHS" anniversary is because we don't ever think about it. On a day-to-day basis, we don't treat Emma Kate like she has a broken heart. She loves to run and dance and play. She loves to make silly faces and laugh. She's a very loving, sweet girl. She is learning so many new words, and she's talking up a storm! It is Emma Kate that convinces us that we have a normal child. HLHS does not define her, as I had feared it would two years ago. And I am so thankful for that.

Obviously, we are not finished with this journey in the Heart World. We never will be; it is lifelong.  Emma Kate still has to undergo the Fontan (which the doctors are predicting will be when she is around three years old). Some days I have a hard time convincing myself that she will need another open-heart surgery. I think that is because she just seems completely fine. In some ways, I dread those days ahead, but I also have such a peace about them. It's unexplainable. But I know the One who has granted me with such peace. I know my daughter's life is completely in His hands.

And I am so very glad that it is, because I sure do love this little girl. 

Monday, April 19, 2010

Emma Kate is 20 months old today!
We love you, sweet girl!

Wednesday, April 7, 2010

(Almost) Wordless Wednesday

If you are my friend on Facebook, you've probably already seen this picture. But I.love.it! Emma Kate is wearing Anna Brooke's t-ball shirt and hat and I think she looks so adorable!

I hope everyone is having a great week!
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