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. 

A little over one year ago, Emma Kate had her Glenn. Little did we know, she would be spending a long stretch in the hospital. I wish I could go back and tell myself that. I think I expected her to be in and out after surgery. I also wish I could tell myself that in the end, she would do great!

Just reflecting today, I am so thankful for Emma Kate. She is such a blessing. I am also so grateful for the wonderful people who have taken care of her: her cardiologists, nurses and especially Dr. Paul Kirshbom, her surgeon. Mostly, I am so thankful to God, who has performed numerous miracles in Emma Kate's life.

One Year Ago...

I've been going through all my old photos and I came across this one that I thought was adorable! I cannot believe it has been a whole year since this was taken! You've come so far, baby girl!

My Little Tiny

Emma Kate just turned nine months old on the 19th! She is doing so great and of course, she's very happy. We have been enjoying the warmer weather and are trying to get outside a little each day. Sometimes it is hard with two kids to go anywhere. What makes that harder is that AB and EK usually have opposite nap schedules, so it seems like we are home a lot.

We've been having in-home physical therapy appointments once every other week and they seem to be helping Emma Kate a lot. As of Monday, she has met all of her original goals that the therapist, D, set for her and she now has a few more challenging goals to meet including getting into a seated position from her back or belly and belly crawling. D also said that she will probably be seeing EK until she is at least walking. After that, she likely won't need any more phys. therapy! Good news!

I took EK to see Dr. Stone, her pediatrician, today for her 9 month check up. He took her completely off the Reglan and she's now just on 4 meds: Lasix, Prevacid, Aspirin and Lisinopril. Much more manageable! Size-wise, Emma Kate is 26 inches tall/long (10th percentile) and weighs in at 14 pounds, 2.5 ounces (just under 3rd percentile). She's so little, but she has always stayed on this curve and hasn't dropped at all, which is good. I believe she is the average size of a 5 month old. I love having a tiny baby. I would love her to have chunk up a bit, of course, but if she is eating well and she's still tiny, then so be it. She will likely be my last baby, so I am all about keeping her small if she is going to be.

Emma Kate is hilarious, her personality has bloomed! She loves to watch sports on TV and claps and claps. She's our little cheerleader. She is saying ba-ba, da-da, and ooooh! She's got this killer smile that she's been working on for a little while now and I just love it! She loves the swings whenever we are at the park and she loves feeling the breeze on her face. If we have her in the double stroller, she wants to be in the front seat at all times, because she enjoys the view, I'm sure. She also loves books and an occasional Baby Einstein movie. Her favorite toys are probably the Exersaucer and anything with a tag she can chew on. She still hasn't gotten any teeth in yet. Her favorite foods are sweet potatoes and banana/strawberry/apple combo. She also loves yogurt and baby oatmeal. Of course, Emma Kate loves her big sister and laughs at her all day long. She will do anything for her attention. It is the sweetest thing!

Enjoy a few pics:

"Oooooh!"

I just need to know, what is this face, sassy pants?

One Year Ago Today

One year ago today we learned that Emma Kate did not have a whole heart, and it turned my world upside down. You can read my original post from when we found out by clicking HERE. This period of my life has been on my mind so much lately. I'm not quite sure that I realized it at the time, but looking back, I think in the moments that I learned that Emma Kate's heart isn't normal, I became an adult. My priorities changed. I realized that God had a much different plan than I had ever envisioned. He has a plan for Emma Kate and for me and our family. God has used Emma Kate already in her short life to show others His love.

Today as I think about all that has happened in the last year, I am so grateful and very thankful for my precious little daughter. I am thankful that her birth and surgeries have all gone well. I am grateful for all of the support and prayers that have come her way. I am thankful for all of the doctors, nurses and her surgeon that are so talented. I am also thankful for all of the families I have come to know that have "heart babies." I know if it weren't for Emma Kate, I would probably never know them.

Emma Kate's heart will always be an issue in her life and in mine, too. It is something that we will always have to deal with. I'm sure it will remain in the back of my mind at all times. It isn't something most people can understand, but I know that I will always probably be overly-cautious with her. I don't want to treat her any differently, but I think that will be a challenge for me.

I have also realized what a great miracle a healthy baby is coming into this world. I am glad that I don't take life for granted any more. So many times, we picture getting married, having a baby and moving on with life. Having a child with a heart defect or any other health issue or special need will put life into perspective. We could have lost Emma Kate if she had been born twenty years earlier, or if the ultrasound techs didn't catch her heart defect before she was born. We could have lost her if the surgeons' hand slipped during surgery or if we didn't know what to look for when she was in distress. Her life is a complete miracle! It is amazing that she is alive and living a normal life with half of a heart!

I am in awe. I am thankful for my sweet miracle.

I wish I could go back a year ago and tell myself that it would all be okay. That the next few months would be the most challenging I would ever face. But, that Emma Kate would not only survive her birth, but also survive two open-heart surgeries! That she would have complications, and have to endure yet another surgery, but that she would survive. And the best part of it all, is that she would be happy through it all.

Thank You, Jesus, for the blessing of our sweet daughter, Emma Kate, and for giving her the most peaceful spirit a child could have. Thank You for preparing us ahead of time for what was to come. And thank You for Your love and Your promises to us. Thank You for showing us Your love through our little girl.

Eight Months

Emma Kate turns 8 months old today! Here are some pics from her monthly photo shoot! :)

she's started with the stranger anxiety...

chews on everything...

makes the cutest faces ever

first time showing off both her battle wounds:

still constantly happy...

sweetest little toes

I took a million and a half photos all while Big Sis was doing this:

Seven Months Old, 4 Years Strong

Well, my sweet baby girl is seven months old (as of March 19th)! It doesn't seem possible that she is already this age, for several reasons. Mostly because it feels like the past two months we've been in the hospital and we have missed out on life so much.


It is good to be home with my little angel. She is loving it! She loves playing with her toys, sleeping in her own bed and actually wearing clothes. She is drinking from a bottle and doing great! We restart Similac MONDAY! (Woo hoo!) I can't wait to fatten that little waif up! She is only 11 pounds 12 ounces-so little! She is slightly behind in a couple of developmental areas right now, but I suspect that after being home for awhile and regaining her strength, she will catch right up to where she needs to be.

Emma Kate,

My sweet girl, I love you! I am so proud of the little person that God created you to be. Again and again you amaze me each day. The sweet spirit God has blessed you with is so incredible. All of the scars on your body remind me every day of how hard these past seven months have been on you. But you smile and laugh despite all you have been through. God has revealed so much to me through you and to me, you are living proof that He exists. There was a 1 in 10,000 chance we would have a baby like you, and I'm so thankful that we were that 1. You make me so happy. I can't wait for you to live life like any other baby would. This spring and summer are going to be so fun for you, I just know it. We are going to have fun, little one! Happy 7 month birthday!

Love, Mommy

Do they look alike?

The first one is of Anna Brooke at 7 months. The second is of Emma Kate. I keep saying how, except for the eyes, I think they look alike. But I had the HARDEST time finding a picture where I felt they looked alike. I don't know, what do you think?

Also on March 19th, Brooks and I celebrated our 4 year anniversary. A LOT has happened in the past four years. I think that they have been the most happy, busy, amazing, trying and life-changing four years of my life. Brooks, I am so thankful for you and the wonderful husband that you are to me. You are an amazing father to our girls. I couldn't have chosen a better Daddy for them! Who knew that just weeks after celebrating our one year anniversary, we would have our precious Anna Brooke? And then just two years after she was born we would enter the most difficult, most scary, yet beautiful time in our lives? I am so proud to have emerged from this storm by your side. I love you!

Happy 4 Month Birthday, Emma Kate!

Emma Kate turned 4 months old yesterday! I can hardly believe it! (I know I say this every month). I love this age. I took her to see the doctor yesterday for her 4 month check up. Everything looks great and Dr. Stone is very pleased! Emma Kate is 11 pounds, 1/2 ounce. She's 23 inches long. She's tiny, in the 10th percentile for both, but that is ok. She has always been a tiny girl. Her progress is just fine.

She is starting to look a bit more blue than she ever has. Her pulse/ox reading was averaging about 68% yesterday and that had me a bit worried. (FYI: pulse/ox reader indirectly measures the amount of oxygen in the blood. People with "normal" hearts would probably have a reading of 99 or 100). Emma Kate's average readings have been anywhere from 75 to 85. I called the cardio. office just to double check that she was within normal range. The nurse told me that she should be just fine, but she is telling us that it is time for her Glenn. We are still waiting to hear from Dr. Kirshbom's office about when her second surgery will be. All the cath information was sent over to Atlanta last Saturday, so it has only been one week. We are very anxious, though!


Emma Kate,

You are so very sweet! I am so glad that we've had the last 4 months to get to know you and love you! Your personality is starting to really show. You can sleep through anything still and you are picky about very few things. You are still eating well and we are so proud of you. You eat about 2 or 3 ounces every 2 to 3 hours. You are enjoying the bottle. You had a heart cath last week and you rebounded from that like a little champ! I was so afraid that you wouldn't get your sweet, smiling personality back, but you did after only a day! I know that was so hard on you, sweetie. We are still waiting to hear when your next surgery date will be.

One of your favorite things is your sister. If she is in the same room as you, you cannot stop staring at her. She is all over the place and you follow her around the room with your eyes constantly! We can tell you love her. Anna Brooke loves you, too! She is always talking to you and saying sweet things to you. You also love to look in the mirror, especially at yourself! You laugh and giggle like crazy when you see that cute little girl in the mirror! It is a precious thing to watch. You also love sitting up in your Bumbo chair. You are getting so strong. You're holding your head up really well and you're doing great on your tummy. You prefer sleeping on your left side at night. Your cheeks are so CHUBBY!  We love to kiss them! :)

Some other things you are doing at 4 months old: you laugh and giggle a lot! (You're very ticklish, too). You are grabbing toys with your hands and you love to kick your little legs and push your feet against things. You scoot around your crib or on the floor when we put you down. You also chew on your hands a lot and you're drooling quite a bit.

We love you, Emma Katie. You continue to be such a blessing to our family!

Love,
Mommy

3 Months Old!

Emma Kate is 3 months old!

She is doing great and she's such a joy! We went to see Dr. Stone (pedi) a couple days ago for some blood work. He was very pleased with how her bottle feedings were going. In fact, last night I got her to drink 90mls (abt 3oz) at one feeding! I was very excited about that. She spit up some, but it wasn't too bad. Next Tuesday is Emma Kate's heart catheterization. We have to be in admitting at 6am! And it will definitely be an overnight stay at the hospital. Sad. But honestly, I'd rather be there just to make sure we are in good hands if something goes wrong. I pray that EK will do well and she will recover well from the cath. She will have to be intubated for the procedure, which I was not happy to hear. But when we see her, she won't be intubated. I just hate to think of all that baby is going to have to go through again in the coming weeks and months. We don't know yet when her Glenn (2nd surgery) will be. After the cath next week, her cardiologist will send all the info gathered from the cath and send it over to Dr. Kirshbom (her surgeon) in Atlanta. They will make a determination on the surgery based on her information. So maybe a week or two after the cath we'll know something more definite. I know that this surgery is supposed to be the easiest of the three, from what we've been told. But, hey, it is heart surgery and it is going to be so hard to hand over my little precious girl to have her chest opened up again. There are always risks. Thank you for your prayers! We so much appreciate and treasure them! Please continue to pray for Emma Kate. We are so grateful for her and for the past three months she's been our little girl!

Sweet Girl, I Cannot Believe You are 3 Months Old!

My little Emma Kate,

You have reached so many milestones in the past month! Your biggest yet: you are finally drinking from a bottle! I am so very proud of you! It took a while, but you finally got it. I think Dr. Law scared you when he said you might need to have surgery to put in a G tube. You were not having that! Good job! You are starting to get so strong, too. I think if I start putting you on your tummy to play more, you will be rolling over before we know it. You can roll over half way now. All of your doctors and nurses and other friends are so happy with how well you are developing and growing. Your reflux seems to be pretty much under control. Of course, you are still on several medications, but they are helping you out a lot right now.

We've been out and about a lot more over the past few weeks. In fact, we even went to your big sister's Gymboree class twice this past week and you seemed to love looking around at all the bright colors and hearing the children laughing and music playing. It has done you a lot of good, I feel.

You are still enjoying your swing and your baths most of the time. We have been putting you in your crib more to take naps and sleep and you are out cold when you lay down in there! It must be so comfortable! :) You also love to ride in your sling when I take you places. I think you like to see what is going on around you. You have started talking more to me and Daddy and sometimes Anna Brooke when she's not too busy. You are even laughing a little bit, too! It is the most precious sound. Your favorite person is your Daddy. I think you two have a special bond. Every time he is near you, you flirt like crazy with him!! You smile and look away and you are always happy when he is holding you. He loves you so much.

We all love you, so many people! You still have so many people praying for you and I know that God has sent his angels to watch over you and keep you safe. You are such a precious little girl and we are so thankful for the past 3 months.

Love,

Mommy

2 Months Old!

The past month has flown by! Its hard to believe that Emma Kate is over two months old now. She is growing so fast and gaining weight like a champ! I'm so thrilled to see her grow every day. It amazes me so much that she is so normal. I know that might be weird to say, but my child has half of a heart and she does basically everything that a baby would normally do. She's amazing and we are in awe of her every day!

Emma Kate, you continue to be such a precious blessing to us all! As of Thursday, October 30, you weigh 9 lbs, 12 oz. You have the most precious smile. You are very social and love to "converse" with Mommy and Daddy, making the sweetest cooing sounds. Generally you are very happy. You still enjoy your baths and your swing, and since we've introduced you to the playmat, you love that too, just like your big sister did. You also enjoy being carried in the sling. You like to see what is going on in the world around you. Another thing you love is sleeping in your carseat. You hate to be buckled in, but if you are sleeping, that is where you want to be! :)

We are trying more and more to feed you with a bottle, but you aren't quite sure what to make of that. Your big sister loves you so much. She always makes sure you are ok and gives you your paci when you cry! She's very interested in your toys, too. You are still sleeping though the night and taking several naps during the day. You're starting to put yourself on a schedule. We love you sweet girl and we're thankful every day for the precious girl that God has blessed our family with.

Beautiful

Today is the one month anniversary of Emma Kate's Norwood. I had been debating whether I should put up these pictures, but the more I thought about it, the more I wanted to share them. I know that they might be hard to look at, but this is part of who Emma Kate is, part of her story, and she should be proud of the fight she has fought! She is so beautiful and I want to share just how beautiful she is.

This was taken right before she was taken to the OR on August 22. Needless to say, it was a very emotional moment and a very hard day.

After she came back from surgery. It was hard to see our baby like this, especially since she looked so healthy that morning. She is healthier here than she is in the above picture.

After her bath two nights ago. Her incision has healed very well!

One Month Old

Emma Kate, you turned one month old on September 19! I cannot believe it! This month has seemed very long in some ways and very, very short in others. We are so glad that you are home with us and doing well. At one month old you love to sleep, of course, like most newborns. You are a great sleeper! You sleep through the night, which Mommy loves. You are still getting your nutrition thought your NG tube, but I am beginning to nurse you, and you love that much more than the bottle we had been trying. You are still learning how to suck, since you did not have to do so for such a long time. Nursing will take time, but I am confident that you will do well. Other things you love: the Boppy! You sleep the minute we put you down on it. (Even though the warning label says not to let a baby sleep on it! Yikes!) You also love the swing and love looking at the little mobile that plays music above you. Baths are a favorite of yours, too. You love to have your hair washed and to get all clean. Your big sister loves to hold you and when you cry, she comes right over to comfort you to say "Sshh, baby. Its ok." She loves you very much. We all love you very much, you sweet little miracle. Happy one month birthday!