Emma Kate's Heart Journey

No News is Good News!

2011-07-15T10:15:00.000-07:00

I hope everyone is having a wonderful summer! So far, we've been very busy visiting family, taking swimming lessons, and playing with friends. A few weeks ago, Emma Kate had her quarterly cardio visit. She did great for her EKG and Echo. Dr. Cardis said her heart function is optimal! We're so grateful that she is doing well, but we don't take a single day for granted. That being said, it is easy to forget that she will need another open-heart surgery. It's crazy how she defies her limitations! Emma Kate is one fearless kid. Constantly jumping off the couch, climbing on counters and chairs, running around, swimming, and pretty much everything I never thought she'd be able to do. It's amazing. She keeps us laughing every day and she's such a blessing!

She loves to wash dishes, help me bake and cook, and play with her baby dolls! She told me the other day that she wants to be a mommy when she grows up. I know you will, baby girl. One of her new found favorite things to do is chew gum. She asks for it constantly. It's so funny to see her chomping away, looking like a grown up. I think she feels grown up chewing it.

A big milestone we have coming up is Emma Kate's 3rd birthday! So hard to believe that kiddo will be three! She has yet to decide on a birthday party theme. I've asked her several times, and she either says she wants a Caillou party or a Tangled party. (My vote would be for Tangled... and if you know who Caillou is, then you understand why!) I'm sure she would be happy with either! Another big milestone we have reached is being potty trained. Emma Kate has caught on pretty quickly and mostly wears panties every day. When we are out running errands, I usually keep a pull-up on her still, but she's getting the hang of things and stays dry most of the day! I'm so excited about that. It's mandatory that she is potty-trained for 3K, which starts August 24. And I have a feeling she'll be just fine by then.

I almost forgot; she now weighs 24 pounds!! I'm so excited about that! Looks like the Nutella sandwiches are working!

Having fun on the swings.

She loves the camera!

Sweet sister.

Sleeping with Jessie and Daddy.

Last day of swimming lessons!

Pool girls!

Busy Summer

2011-06-10T12:28:00.000-07:00

We are having such a fun summer! Emma Kate is doing very well. It's hard to believe she will be three years old in just two months. She has a cardiology visit coming up in a little over one week. I don't anticipate anything major happening at the appointment, but I will keep the blog updated with anything heart related. Thanks for checking in!

February-March Update

2011-04-01T19:12:00.000-07:00

Hey friends! Thanks for checking up on Emma Kate!

Things are going really well, and there isn't a whole lot to report, thankfully. We have been enjoying the spring weather and have been making summer plans. February was a pretty uneventful month, with the exception of CHD Awareness week. I did a little bit of researching online and found out that there will be a Congenital Heart Walk in May in Washington, DC. Since my parents live in that area, we plan on attending. So far Team Emma Kate has raised a little over $200.00. All of the funds will be donated to the Children's Heart Foundation. We're super-excited about walking with our friends and family and Team Charlotte, too!

In March Emma Kate had her quarterly cardiology visit. This appointment just included an EKG and a visit with Dr. Cardis. He gave us a great report, and declared that she is not "in need" of having her Fontan yet. As I have said before, her doctors are going to wait as long as they can for the surgery. The idea behind this is that years after the Fontan is when health problems arise that are not seen in post-Glenn patients. Also, the Fontan is the end of the repair process. Once this has been done, there isn't really anything else surgical that can be done for her heart. So, basically, they are buying time on the back end, if that makes any sense. In any case, the doctors will be ready whenever Emma Kate is ready! She is satting right around 82ish at this point. She weighs 22.4 pounds, and while that is still below the 3rd percentile, she is making steady weight gain, even if it is just a pound or two per year. She has not fallen off the curve, so that is definitely positive. Once her energy levels decrease, she starts losing weight, her sats are dipping into the 70s, or her heart function decreases, then the Fontan will be given more consideration.

Emma Kate is continuing to enjoy school twice per week. She loves playing outside, and when we go to the park or to her grandparents' house, she immediately wants to get on the swings! She's so full of energy, it amazes me! Usually, she gets up around 6 am (much to my dismay) and she does not stop until nap time. At one point she was napping for up to four hours, but she's napping about two hours on a pretty consistent basis. Bedtime is usually at 8. We recently had a visit from the Paci Fairy, who brought Emma Kate a Newborn Baby Doctor Barbie in exchange for all six of her pacifiers. She still asks for the paci daily, but she's now going to sleep a little bit easier without it. Next up: potty training!

Here are a few pictures from the last couple of months! Enjoy!

December-January Catch Up

2011-01-20T12:10:00.000-08:00

Hey faithful blog readers! December was such a busy month for our family and I have lots of stories to share! At the beginning of the month, if you remember, Emma Kate had a regular appointment with her cardiologist. It is a blessing that we have nothing new to report. EK was perfect through the whole appointment. Her EKG and echo went well, and her heart function still looks great. Dr. Cardis only brought up the Fontan (final stage of surgery) to say that he didn't feel it was time for it yet. EK's oxygen saturations hovered around their normal, which was 82-83. Her energy level is really good, she doesn't get over tired in her normal, daily routine, which is what we like to see. When these specific factors begin to change, or if her heart function starts to decrease, it is at that point that her team with begin discussing specifics on when her Fontan will take place. Cardis cleared her for our flight to Hawaii, too!

We flew out on December 13th for an eight day vacation to Honolulu. On the flight there, we ended up having oxygen with us and a pulse oximeter. EK did not need continuous oxygen, which was awesome. But we did need it a few times. However, the lowest her sats got was about 72-73. I was pretty impressed. I think I scared myself into thinking she would drop down into the 60s. I'm so glad I was wrong.

When we arrived at the airport, it was night time and it was very HOT and muggy, which was especially weird since it had been snowing when we flew out of Atlanta. The kids were exhausted, as were the grown ups. We actually stayed in Waikiki Beach, which was beautiful. It was very surreal to be in such a tropical place in the winter time. I can see how it would be easy to lose track of time in a place like that when all the months of the year carry the same weather patterns. For us, the weather was perfect and we had such a great time. The girls enjoyed the beach and the sightseeing we did. It was hard for them to appreciate that we were in such a cool place, of course, but I am glad that we were all there.

The beach was such a hit with the girls! The sand was totally different than the sand we are used to! Normally, when we go to the beach, it is somewhere in Florida or South Carolina, and the sand is very soft. The sand was quite coarse and harsh on our skin in Hawaii. The girls didn't like that. The water was also pretty cold. We had to keep bringing Emma Kate up to our beach chairs every now and then to warm her up. She would get so cold and turn purple-y blue and start shivering. It was hard to stop her from playing, she didn't understand why she had to get out of the water.

We returned home on December 21st and spent Christmas here at home before flying up to Virginia to visit my parents and brother. We had a great time there, just relaxing and spending time with family. Brooks and I took the kids into DC one day. We went up the Washington Monument, which held amazing views from the top! We also went to the Museum of American History and spent far too little time there. I wish we could have explored the entire place!

Showing off some of the contents of her stocking Christmas morning. The kid has Bieber Fever. I need to get a video up of her singing!

They love their Uncle Zach!

Emma Kate is trying on one of the wooden shoes my parents got in Holland many years ago.

EK's favorite activity while at Nana & Papas house: lining up the baby Jesus' from each nativity.

The girls adored the largest dollhouse in the US and wanted to take it home.

The view from the top of WaMo. 555 5/8 feet!

Nana & Knox. And Aunt Erin's painting. I think she did a great job, even if she is 25.

Haha! Love you, Erin!

Little mama helping me feed her baby brother.

I'm so glad we are back home now and into our routine again. We're back to work, school and church and visiting with friends. Good to be home. Right now I am getting in gear for CHD Awareness Week 2011. Still trying to decide what unique ways I can spread awareness in our community. If you have any you'd like to share, I would love to hear about them!

October-November Catch Up (In Pictures)

2010-11-30T14:12:00.000-08:00

Whew! November has flown by! Here's a glimpse of life over the last two months.

Hangin' with my bro.

AB, Knox, EK at Nana & Papa's.

The swings are her favorite. They also put her to sleep. :)

Fun times at the pumpkin patch with Daddy!

Had a sweet visit with Charlotte while we were in the DC area.

Halloween! It's hard to tell in this picture, but Emma Kate was dressed as a ladybug. AB is a butterfly!

Walking to the fall festival at our church.

Reading to her baby brother.

Enjoying a snack before bed.

Visiting the alpacas at Aunt Teri's work. Pretty neat!

Enjoying Thanksgiving feast at school.

I promise, she really loves her teacher Mrs. Caren. I do, too. She's awesome.

Coming in from the playground.

I wish my updates weren't so spread apart. Things have been crazy, though, and I while I would love for things to slow down, I don't see that happening any time soon. December promises to be just as crazy. We are leaving in less than two weeks for a week-long vacation to Hawaii! Needless to say, we're quite excited about it. There's a lot to prepare for when you are taking three kids on a 10+ hour flight. Not to mention one of them is required to have oxygen on board just in case. Coordinating that hasn't been as much of a hassle as I thought it would be. After we get home from Hawaii, it will only be a few days until Christmas and then we are off to visit my parents in the V-A!

Emma Kate has a cardiology appointment next Thursday. I feel that all will go smoothly, but we may have more of an idea of when her Fontan will take place. She's started getting a bit more blue. But the good news is, the kid never stops going. She's definitely not lacking energy. I am planning to update after her appointment, but please know that no news is good news, just in case I don't have time for a blog entry!

Thanks for checking on Emma Kate!

Some Major Catching Up

2010-10-03T12:02:00.001-07:00

Having three kids hasn't been easy. I have really been slack about blogging. There's just not enough time in the day to get everything done. And honestly, blogging is the last thing on my mind if it's there at all!

Emma Kate had a cardiology appointment about two weeks ago. It went well. Her sats were at 82, she weighs 21 pounds. She sat perfectly still for her EKG and our visit with Dr. Cardis was great. We are still planning on holding off on the Fontan surgery as long as possible (could even be age 4 before she has it). We informed him that she is now attending 2K twice a week. He was okay with that. The germy-ness kind of scares me, but she's really enjoying the interaction and loves her teacher! She's no longer eligible to receive Synagis, but we do plan on getting flu shots in the near future. Hopefully she can fend of germs and not get sick.

Yesterday morning, however, Emma Kate woke up at 6 am with a 101.3 fever. We took her in to the after hours care at our pedi's office. Just an ear infection. Or something. But her lungs sound clear and her heart sounds good, which is what we were mostly concerned with.

We are still working on packing on the pounds with EK. Her little brother is going to pass her quickly! (He's already 13 pounds at two months old!!) I'm trying pretty much everything. If you have any suggestions, please let me know! But she eats when she's hungry, has boundless energy and seems to be growing ever so slowly.

She adores her baby brother!

She's a little jealous...

2010-08-29T05:54:00.000-07:00

...so maybe she thought she could trick me into thinking she was her brother by wearing his bib.

First Day of School

2010-08-27T06:09:00.000-07:00

Emma Kate's first day of school was last Thursday 8-26. It turned out to be a great day! She went right into her classroom and didn't look back. I'm so glad she's happy in her class. She loves playing with other children. I really like her teacher, Mrs. Caren. She's also the music teacher for the girls' school. We were given a copy of the class schedule, and it looks like Emma Kate will be kept very busy for the three hours she is there. When I went to pick her up at noon, she was climbing on top of one of the tables! I guess I should have warned Mrs. Caren that she's a little bit of a daredevil. Once we got home, EK talked about school non-stop and kept asking to go back. I'm so excited about this year. I think the hardest part about it will be explaining why Emma Kate can't go to school every day like her big sister!

Happy 2nd Birthday Emma Kate!

2010-08-24T18:11:00.001-07:00

My Emma Kate,

Two years ago, you came into this world. At 4:37 p.m. on August 19, 2008, you were born. You looked absolutely perfect, and so pink! But Mommy and Daddy were scared to death. You see, when God created you, he gave you just half of a working heart. At only three days old, the doctors did everything they could so you could live, and you had your first open-heart surgery. You did amazingly well, and at less than 2 weeks old, we got to bring you home. Since then you have had a few obstacles and challenges, including a second open-heart surgery, a lengthy hospital stay and complications which led to another surgery. You have had so many people praying for you; rooting for you your entire life. And God has shown us his grace and mercy through your life every day.

And two years later, you are here! Every day, I pray that God will do a miracle in you. That He will give you a whole heart. Physically, I know God may not answer this prayer. But in every other way, I feel I can safely say that He has. There is decidedly nothing half-hearted about you. You are tiny, but you are strong; the strongest little person I know. You love to play outside and if you can't, you'll definitely make a mess inside. You aren't afraid to test your limits. You love to climb and run, jump and dance. You love, love, love your siblings. You'll do anything and everything for your big sister. And I've never seen a child love her little brother the way that you do. You're a little mama. You love babies and baby dolls. You love to read and sing; Shout to the Lord is one of your favorites. You say, "I love you" more than any other child. You are so polite, telling everyone "please" and "thank you" for everything. You're spunky, happy, content. You love to wash dishes with Mommy, take baths, jump on beds, hide in closets. You love to laugh. You're always on the move, not stopping for anything. You are hilarious, and you're always making us smile and laugh.

Emma Kate, you bring such joy to your family! We are so glad God has let us keep you. We treasure you and we have cherished every second of the last two years. You are such a blessing. We love you, our sweet little miracle! Happy birthday, my Emma Katie!

Love,
Mommy

Make an on-line slide show at www.OneTrueMedia.com

EK's Birthday Party

2010-08-24T08:08:00.000-07:00

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!

Pray for Baby Luke

2010-06-29T00:35:00.000-07:00

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!

Cardiology Visit

2010-06-22T05:53:00.000-07:00

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.

Smiles at Breakfast

2010-06-05T11:41:00.000-07:00

I never thought I'd forget...

2010-04-29T11:50:00.000-07:00

... 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.

2010-04-19T10:47:00.000-07:00

Emma Kate is 20 months old today!

We love you, sweet girl!

(Almost) Wordless Wednesday

2010-04-07T10:34:00.000-07:00

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!

Nineteen Months Old!

2010-03-19T10:22:00.000-07:00

Happy 19 Month Birthday, Emma Kate!

Tuesday and Thursday Emma Kate had her cardiology appointment and 18 month check-up, respectively. Her cardiologist sees her every three months. Since she had an echo last time (she gets them every 6 months), this was just a check-up appointment. She had an EKG, pulse/ox reading, and height and weight measurement. Dr. Cardis thought her heart sounded great and is very pleased with how she is doing. I always feel great after visiting him, because I think he can understand why Emma Kate is small, but he also sees how active and healthy she is! The little princess weighs in at 18 pounds, 10 ounces, she's 30 inches long and her pulse/ox reading was 86.

New this month, Emma Kate is learning to love books. Finally! For the longest time, it was all I could do to get her to sit down and even look at a book for more than five seconds. Now she and I have some serious cuddle time in her rocking chair before bed. We probably read for at least 15-20 minutes. And she always asks for more. It's really fun.

Her verbal skills are excellent! She is talking like crazy, identifying pictures in books, pointing and asking for things. She will repeat anything we ask her to. Brooks and I understand everything she says, but we might be the only ones. She has her own little language a lot of the time.

She is at the peak of her stranger anxiety. Especially with doctors and nurses. She screamed at both appointments this week. She also hates to be away from Mommy at any time. When we leave her in the church nursery, she gets pretty teary-eyed, too. We have left her overnight a couple of times, and she's done well, though. I love that my baby loves me. I know it won't be like this for long. I do want her to be less wary about going to church and being left for a little while. I am going to be putting her in 2K two days a week next fall! I think it will be really good for her. She always asks to play in AB's classroom every time I drop her off/pick her up.

Last night I went through EK's closet and organized all her clothes that she cannot yet fit into and I put all of her too-small stuff into a box. It's too bad that I can't save anything for our baby boy. I mean, I don't want him wearing pink, but we don't have anything blue, or even gender-neutral. I guess I need to do some shopping soon. The next 18 weeks are going to fly.

Wordless Wednesday

2010-03-10T11:05:00.000-08:00

Chase

2010-03-02T08:29:00.000-08:00

This is our heart buddy, Chase. He is having his Glenn on Wednesday. His mommy and I have been in contact for a little while now. So far, Chase has been doing great! He had his heart cath last week and the doctors decided that it was time for his second surgery. This is such a scary time for his family. I know they are trusting that God is going to do miracles in Chase's life. Would you please pray for Chase, his family and his doctors and surgeons tomorrow? Thank you so much. You can follow Chase's story here.

It's Her Life

2010-02-24T20:02:00.000-08:00

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!

2010-02-24T09:24:00.000-08:00

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

2010-02-19T11:14:00.000-08:00

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!

2010-02-19T09:12:00.000-08:00

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?"

2010-02-17T11:29:00.000-08:00

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!

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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

2010-02-06T22:55:00.000-08:00