Some New Skills

Emma Kate is almost one! I can hardly believe this! To see how far she's come is something amazing and I am so proud of her. Lately she's being doing great with "catching up" on her skills. We recently had our bi-monthly visit from Beth, who evaluates EK's progress. She told me that Emma Kate is completely on track and right where she is supposed to be developmentally.

EK is crawling around like crazy now! She goes into every room in the house, puts everything she sees on the floor in her mouth, opens every drawer within her reach. She is also pulling up on furniture and cruising. It's hard to keep up with her now!

Priceless

It's nap time. My precious little daughters are sound asleep right now, dreaming peacefully. I keep thinking of them. I am grateful for them. I am grateful for Anna Brooke and her health. I am grateful that she is so intelligent and that she's the most sensitive and loving big sister. Mostly, though, my thoughts keep drifting to my sweet Emma Kate, who I can hardly believe will turn a year old next Wednesday. This has been the longest, most event-filled year in my life. But I'll save that for another post.

For some reason, big milestones always bring me to the realization that there is a living miracle in my house. A baby that lives and thrives with half of a heart. A baby that is now crawling around everywhere, pulling up on everything in sight, getting into every drawer, cabinet and corner that she can. It's beautiful.

And every day for the past year, I see that faded scar, I kiss it and I realized how truly blessed I am, how blessed we are as a family, and how blessed she is with life! Her life is so precious. I am joyful because my baby is alive! I am joyful because she has lived the last twelve months as my daughter and she has done so amazing.

But I am really struggling. My heart is so heavy and my mind is burdened. When I think about my daughter, I can't help but think of other children who have heart defects like Emma Kate, who are not so fortunate. Kids who are in and out of the hospital, who have so many more challenges, who are waiting for a heart, who have complications... who have lost their lives in this horrible battle. It deeply saddens me. Every day I pray for others who are struggling, and I realize how very fortunate we are. May I never take that for granted.

Something has been tugging at me for a long time now. A lot of stirring has been going on in my little heart and it won't settle. It is determined to get out, no matter how much shoving I have done. I've thought long and hard about how to approach this topic. Quite frankly, part of me doesn't want to, mostly because it is so controversial. I'm not really one who likes to ruffle feathers, especially if I am unsure of my audience. Plus, I'm just not an expert. I only know my own reality, not any else's.

You see, when I was pregnant with Emma Kate and we found out about her special heart that day, it never entered my mind that we might lose her to this. Maybe that is being naive. Or maybe it's being hopeful, I don't know which. Either way, we were told that because of her heart, she would need to have surgery to survive. That's it. End of story. No other options were given to us. Why should they be? We didn't know any differently. Then, a few weeks later, I was researching, Googling, doing all the stuff you do when you have no idea what Hypoplastic Left Heart Syndrome is or what it means, and I came across something on a message board called "comfort care." I had no idea what this was. The words "comfort care" sound really, uh comforting. What is this about?

As I went on to read about more about it, I was completely shocked at what I was seeing on the computer screen in front of me. Comfort care, if you are unfamiliar, is an option given to certain families when a poor diagnosis has been established, such as Emma Kate's. In essence, "comfort care" is opting to do nothing. No surgery, no waiting for a transplant heart. It is refusing treatment of any kind. And in my opinion, it is also refusing to give your child a chance at life.

I have a few problems with this choice. I cannot understand why this is even an option given to the parents when there are treatment options available! If there is a chance (even a SMALL one) to save my child, you better believe I am going to give her that chance! Why wouldn't I? I guess you could argue that perhaps she might suffer more in life if she has surgery. And certainly, that wouldn't be ethical, right? Still, even if the odds are against her, they are still better than if she is offered nothing. If my child has a 10% chance of survival with surgery, it's still better than a 0% chance of survival with "comfort care."

I guess you can tell by now that I have a really hard time justifying "comfort care." Can a doctor predict how the child will do in surgery or what complications they may or may not have? Perhaps. Emma Kate could have had any number of things go wrong during her surgeries. Blood clots, stroke, even death. But does this mean her life isn't worth fighting for? One article I found on this topic was published by the American Academy of Pediatrics. It discusses whether comfort care only (CCO) is an ethically acceptable option and what determines this. Is it ethically acceptable for parents to withhold the right to life that these babies have at birth? I guess that depends on who you ask.

Let's ask my heart mom friend, Tricia about this. Tricia has two daughters, just like me. Her oldest is heart-healthy. Her youngest, Olivia, was diagnosed with several fatal defects, including heart defects, at a Level II ultrasound before Olivia was born. The doctor performing the ultrasound advised Tricia and her husband to terminate the pregnancy; that her quality of life would be poor. This doctor was advising them of what he felt was the ethical option. Despite all the odds and all of the "guidance" that was given to them, Olivia is now a beautiful, happy, healthy 5 year old! One thing I admire so much about Tricia is the fact that she fought so hard for Olivia. She sent letters and pictures to that doctor that advised her to abort Olivia's life. You can read Tricia's letters by clicking here.

I realize that terminating a pregnancy is slightly different than comfort care. But essentially, it is the same: you're not giving your child a chance at life. In the end, I am so glad that termination and "comfort care" was never an option that was even presented to us. I think that if it was, I wouldn't have had near as much hope for my daughter. And at the very least, I would have probably questioned the doctors more and wondered about their prognosis for Emma Kate. I'm glad that I never wondered about that. I always felt that they had confidence in their work and in her. It makes me really sad that some doctors present these options. I bet they don't realize the impact it has on families.

I would go through anything for my girls. I will fight for them with all that I am, every day of their lives because they are priceless! Did it get tiring staying at the hospital when we had some complications? Sure. Was it nerve-wracking sitting and waiting for a phone call with how she was holding up in surgery? Of course! Did it completely suck to have to get up at night to change the feeding pump that was beeping again? Yes! Was it the hardest thing I've ever done to see Emma Kate intubated and miserable from the pain she was in? Absolutely. Do I think that any baby should have to endure any of this? Definitely not. But I would fight for her and cheer her on all over again! If your baby is going to survive, it is going to require that you fight for her. Babies cannot make this decision. They only have their parents to speak on their behalf.

Fever, Fever, Go Away

Very early Sunday morning, Emma Kate woke up feeling very hot to me. So I went into the bathroom and took her temp. It was about 100 degrees. I figured she was teething, and wasn't too worried about it. So I fed her, gave her some Tylenol and then put her back to bed. The fever persisted all day, so I kept giving her Tylenol and gave her a lukewarm bath later in the afternoon. She seemed happy as she normally is, maybe a touch more tired, though. Yesterday morning, she woke up and was hot again... all day! Because she's teething, I wasn't really concerned until her fever spiked after her nap. It was up to 103! That got me a little worried, so I called her pedi's office, and they said it was probably just a fever virus. She isn't having any other symptoms. (No runny nose. No cough. She's happy. She's eating fine.) But her fever persisted all day. When she woke up again feeling hot this morning, I decided to take her in to see her pediatrician.

It actually worked out perfectly, because I already had an appointment scheduled for Anna Brooke to see the doctor, so took both girls at the same time. Dr. Stone examined her--ears, eyes and throat look clear. The nurse came back in and got a urine sample and drew blood from her arm. Emma Kate screamed during this entire ordeal! Anna Brooke was the best big sister and kept saying, "Ssshhh! It's going to be okay, Emma Kate. It's okay." (Just precious! I wish I had been able to record that somehow.)

Dr. Stone said the white cell count in her blood looked fine, it wasn't elevated at all and her urine sample didn't show any signs of an infection. So, what is going on? We have no idea. It is a mystery. Most likely it is just a virus that is pretty common for any child to get. I am glad that Dr. Stone took a look at her blood, though. Potentially, she could have bacteria in her blood, which is a sign that there is an infection in the lining of her heart or on a heart valve. Apparently, this is not the case. The pediatrician's office is going to keep an eye on the blood culture to see if it "grows anything." And they'll call if it does. I am probably making this sound a lot more complicated than it really is. Basically, right now we are just waiting. Waiting for the fever to go away and waiting for the blood culture. (Dr. Stone predicted it wouldn't grow anything based on her other symptoms.) If her fever lasts for 2 more days or she gets worse, I'm supposed to take her back in.

I think EK will be fine. In fact, she just woke up from her nap and she doesn't feel hot. And its been awhile since she's had any Tylenol. That won't stop me from saying my prayers, though.

Catching Up!

Whew! It's been an eventful month. I'll be honest, it will be hard for me to remember all the stuff Emma Kate has done. I can't believe it has been this long since I updated. As a matter of fact, I did sit down a few times and tried posting, but didn't have the time. We have been super busy!

First of all, Emma Kate is now ELEVEN months old! As I say every month, I can hardly believe it! We are so blessed with her and very thankful for the last eleven months she's been in our family. This month she has made some great strides in her development, including getting her first tooth, crawling and pulling up on stuff, plus she's doing a whole lot of talking! Her favorite thing to do is to say "bye-bye" and wave her chubby little hand in sync. (Yes, I know I said chubby. And to the layman's eye it may not look that way, but compared with how she was two or three months ago, you'd agree. It's chubby!)

Speaking of weight, EK now weighs 15 pounds, 8.2 ounces, according to the scale at the cardiologist's office today. She's gained a lot since she was there four months ago! Even better news is that Dr. Law did a quick echo and said her heart function was really good. Go Emma Kate! Her sats were 80 and everyone kept commenting on how great her color is! And of course, she was showing off her waving and saying bye-bye skills to everyone we saw.

Emma Kate & Daddy @ the cardio appointment

Last month, we spent a week-long trip visiting one set of the grandparents, Kiki and Lito, in Georgia. It was so fun to get to play outside and swim any day that we wanted to! Emma Kate loves the water, and I cannot believe I didn't get a picture of her swimming. It was so precious to watch her splashing and laughing! A couple of weeks later, we drove all the way to Virginia to visit Nana and Papa. It was the longest trip E.V.E.R! But well worth it, of course! We had a few setbacks on the way and didn't get there until like, 2 or 3am, I believe. We had a great time just hanging out, walking to the park in my parents new awesome neighborhood, and doing some shopping. My sister and her son (who is the same age as EK) were there, too, so the babies had lots of fun together.

Laughing with her cousin, Alyssa!
Emma Kate & Jackson playing in the pool!

On the way home from Virginia, we made a stop in Durham, NC and got to meet our heart/blog friend Charlotte and her sweet family for the first time! It was so much fun to finally see one another in person! We had a yummy breakfast at Cracker Barrel and got to sit and chat for awhile before getting back on the road. I really hope we can do that again!

Emma Kate & her heart sister Charlotte!

10 Months Old Today!

Precious Emma Kate,

I am so grateful for the last ten months we have spent with you. You have grown so much in the past month! Already you are starting to crawl. You do the army-man thing, where you pull yourself across the floor with one arm to reach a toy that you want (or the TV remote!) You are also pulling up onto your knees when you hold onto something, like the couch. You are making great leaps with your physical development and I am so proud! Miss D, your physical therapist is so impressed with the strides you've taken since she first met you.

Based on my own calculations (aka our home scale), you weigh right around fifteen pounds. I attribute your weight gain to all the new foods you've been eating. You love Cheerios, peach Puffs, shredded cheese, applesauce, peaches, bananas and baby cereals. You don't really like any veggies except for sweet potatoes. We'll work on that. At this point, you are eating and drinking more that you ever have in your entire life! You love to drink water and have learned that you can blow bubbles. You don't like a sippy cup, you'd prefer to drink out of a regular plastic cup and have Mommy hold it.

You have the most precious little "silly face" where you scrunch up your nose and mouth and making a little funny breathing noise--it is so funny! You have learned to say "bye-bye" (but it sounds like ba-ba) and wave goodbye, too. You can also say "da-da" and "ah-buh." (I think you are saying Anna Brooke, but maybe it is my imagination).

I treasure each and every day with you. You make me, Daddy and your big sister laugh so much. You bring our family an enormous amount of joy! We are so very grateful for your life and we will never, ever take you for granted. Happy 10 month birthday, Emma Kate, my little blessing. I love you, my sweet girl!

Mommy

Here's the latest with the girls:

Emma Kate turns 10 months old TOMORROW!  She is getting so big and so beautiful! We are so proud of our little girl! Last week she kind of took off with her eating habits. She now eats 3 meals in addition to all the formula she's been usually taking. I am hoping that she will start packing on the pounds now. I know it's wishful thinking, but I guess we'll see. She is also starting to belly crawl around on the floor. She loves going after the remote control, little balls and other toys. It is so amazing to see her do this! I just didn't think she would progress this quickly. I am so proud of that little angel!

Anna Brooke is fully potty-trained now. Well, I say that and then she goes and randomly wets the bed when she is completely awake before rest time. I know it will take some tweaking until she completely gets it. I am debating if I will put her in a pull up on our trip to Warner Robins this weekend or let her wear big girl panties. Sounds crazy even to me. She is such a smart girl! Anna Brooke is reading books. I got her a couple from the library that are on a 1st and 2nd grade reading level and she can READ THEM! Oh my goodness, I just can't believe how smart she is!

The princess refuses to look at the camera!

We are excited about our jam-packed summer. On Saturday I will shoot my second-ever wedding. I'm excited, but also a little nervous. Then on Sunday the girls and I will head over to Warner Robins for one week! Every morning Anna Brooke asks if today is the day we get to go to Kiki and Lito's! I know we will all have fun. When we get back, I will have exactly one week to get all our laundry done, clean the house, edit photos from the wedding and then leave for Virginia on July 5. We will be at Nana and Papa's for about two weeks! We're so excited!

Update and.... um, hey that's my kid!!

I realize that it has been quite a while since my last update, but that is just because things are going great for us! We are enjoying life and the beginning of what I feel is going to be an extra-hot summer! Today was Anna Brooke's final day of Backyard VBS that Aunt Erin and Uncle Josh's church did. She had a great time! Emma Kate and I enjoyed hanging out with Jackson and a couple others at their apartment every day this week while VBS was going on. Anna Brooke had such a great time singing, dancing, playing games and of course, learning about Jesus! She has come home every day singing sweet songs and even got a CD today with all the songs they learned during the week. It was precious hearing her sing along. I have been trying to capture her with my phone singing, but she will not be having any of that, thank you!

Emma Kate has been progressing well, especially with her physical therapy and her eating. She is getting more mobile, reaching for things, doing the splits practically. She will probably be belly crawling by her first birthday (which is in almost two months!!!) She turns 10 months old next Friday, which is unbelievable to me! Yesterday she finished a jar of baby food and some rice cereal, which is more than she has ever eaten at one sitting before! I was so happy about that. EK is also going to get some teeth soon, I feel. She still doesn't have any, but I can feel the two bottom teeth ready to come through any day (I know Brooks will laugh at this when he reads this because I say that every day!) Poor thing has been miserable laying down for naps and going to bedat night, so I usually just try and give her Tylenol and Orajel before those times and she does pretty well.

So, I wanted to share something that Brooks and I found slightly disturbing. A few weeks ago, Brooks randomly Googled "Emma Kate HLHS." In the search results, he found a YouTube video that had a bunch of details about Emma Kate, like her birthday, her surgeries and her diagnosis (the facts were all jumbled) but the video was of all the pictures from this blog set to music. I was absolutely APPALLED! We looked at the person's YouTube user name who created this video, Brooks sent her a message and she took it down stating that they "forgot" to ask permission to use my pictures. But I just could NOT believe it! It wasn't the fact that it was a bad video or anything, but it just freaked me out a little. Apparently, this girl makes other videos of children who have health issues. I wonder if she "forgets" to ask their parents for permission to use their photos, too.

This type of thing is a little scary and it probably happens more than we realize. How freaked out would you be if you saw your picture (or your child's picture) in some place you never expected? I read a good example of this happening today on Yahoo: This Missouri woman gets a Facebook message from a friend who spotted her family Christmas card photo splashed across the window of a European foods store in Prague! How the heck did it get there? Click HERE to read the full story. It is just insane! You can read more about it by clicking HERE. Like she said, I guess this is the price we might pay for indulging in social media.

After we found that YouTube video, I seriously debated deleting all the pictures off this blog or deleting the blog all together. But the more I thought about it and talked to Brooks about it, I just decided to keep them up for a few reasons. The biggest one is this: we have been getting so many emails recently from other families who are finding my blog, contacting us and feeling HOPE seeing Emma Kate. Emma Kate is giving others hope! I find that so humbling and amazing. The second is that this blog is a documentation of Emma Kate's life, from the very beginning. There is no way that I would just completely delete it all. And if I made the blog private, then, well, we wouldn't be able to reach very many people that way. Believe me, it does scare me that her picture could be taken from the blog and used in some other way. I hope that others will respect our privacy and please, if you would like to use a photograph you see here, contact me and ask for permission before you do so.

Alright, enough about all that. Here, enjoy!