Tears in My Eyes

Its not often I can find a hopeful story about an adult with HLHS. If you are a heart parent or grandparent you should hop over to the blog Inspiring Hearts, which is written by an adult CHD survivor who interviews other adults with various CHDs. I just read the interview with Jeni a twenty-four year old with HLHS! Not only has she survived into her twenties, she is still living with her own heart, and has not had a transplant.  I was very moved by reading her story.

I often wonder what Emma Kate's future holds, but reading about someone who was diagnosed and had surgery over twenty years ago, when this technology was emerging, gives me so much hope. Emma Kate and all her heart friends have technology on their side. There is much more research now than there was twenty years ago on these rare heart defects.

Today I have so much hope. Thank you, Jeni.

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!

Favorites

I thought it would be fun to share some things about my growing little Emma Kate. She is developing into such a sweet toddler and I just love this age! Sometimes I forget that muffin is fourteen months old because she's still such a tiny thing. But she is getting to be a big girl, and I love it.

Emma Kate is a very opinionated little girl and she will let you know exactly what she wants. She communicates very well, even though she doesn't have a very large vocabulary, but it is growing. Here are some of the words she knows how to say:

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  Mama
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  Dada (although she calls him Mama most of the time!)
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  Book (for her sister, Anna Brooke)
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  bubble
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  bye-bye
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  baby
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  yum
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  joo (juice)
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  ba-pap (backpack--thank you, Dora)
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  ow (out)
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  go
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  poo-poo
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  uuh-oh (she loves to say this whenever she drops something)
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  chee (cheese)

She can also sign for "all done" and "more." Every time I ask her a yes or no question, she shakes her head no or nods yes in response. Sometimes I don't expect for her to answer me, but I think she understands more than I realize.

And speaking of "chee," here are some of EK's favorite foods:

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  cheese
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  yogurt
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  oatmeal
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  waffles
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  cheese eggs
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  blueberries
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  apples
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  cheerios
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  graham crackers
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  goldfish
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  chicken
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  spaghetti

She can be really picky, and at times I worry that she's not getting enough to eat. Sometimes I kind of get desperate when she doesn't eat much--she also loves (ACK!!) chocolate chip cookies, donuts, and french fries, all of which I hate that she has already tried. Yes. I'm doing what I can to pack on the pounds.

Emma Kate always seems to have plenty of energy, though. She loves being outside, especially if I am pushing her in a swing or on a trike. She also loves the merry-go-round and slide. She enjoys rides in her stroller, but is aching to get out and crawl around (no, she's not walking yet) after only a few minutes. But she can crawl like it is nobody's business. She is really fast! Seriously, it is hard to keep that kid contained. While we were visiting my parents recently, she climbed up and down their staircase nearly every day. She was really good at crawling up and down the steps. She's also fearless (which kind of makes me nervous) but I love that quality about her.

Another thing I love is that she is totally obsessed with her big sister. She does anything and everything to get that girl's attention. It melts my heart when they give each other kisses before bedtime, or when AB asks if she can hold Emma Kate and "carry her like a baby" (even though that consists of her trying to pick her up by the neck). They both share a love for Blue's Clues (Emma Kate points to the TV and says "Boo" when she sees Blue) and Backyardigans (she always recognizes Pablo or "Pa-bo" as she calls him), but I am really excited to see how they will play together when they are a little bit older. Right now, EK's favorite toys are her baby dolls with which she loves to kiss and rock, blocks to throw right back into their container, and books.

I am so thankful that God created this little blessing and let me be her Mommy. It is such a joy to watch her grow into the little person she is becoming! We are so grateful for you, Emma Kate!

This would be the part where Emma Kate waves bye-bye and then blows you a kiss!

Fourteen Months!

My big girl!

When I Became a Heart Mother

I found this poem on a blog yesterday and I was so touched. It is probably the most beautiful poem I have read in a long time. I do not know the author, but reading this, I know that we both have felt the same way about our children, and I feel close to her and most every other heart mother out there.

One day my world came crashing down, I'll never be the same.
They told me that my child was sick... I thought, am I to blame?
I don't think I can handle this... I'm really not that strong.
It seemed my heart was breaking... As, I'd loved her for so long.
I will not give up on this child... despite your best "advice".
I will give my child a chance... No matter what the price.

And I will learn all that I need... to help my child to thrive.
I'll even use that feeding tube... My child will survive!
Will he require therapy? What if he can't gain weight?
Alright God I can do this... I will not curse our fate.
The feeding pump beeps, (at 3:00 a.m.) It serves as my reminder...
How many parents would welcome that sound? Tomorrow Lord, I will be kinder.
Another angel earns their wings... and I run to my sleeping child's bed...
I watch her then, for quite awhile... (Bend down and kiss her head)
Then I cry for the parents whose lives have been broken, And I look to God wondering why?
Oh Lord, I just can't know your ways... No matter how I try.
And yet, I trust You to hold her life, (and guide us through each day)
My mind says savor each moment she's here... But my heart whispers,"Please let her stay".

From... pacing the surgical waiting room... to sitting by her hospital bed...
From... wishing for a good night's sleep... to learning every med...
From... wondering will she be alright? to watching her reach out her hands.
With every smile, my heart just melts.. (despite life's harsh demands)
For all who see that faded line... I look to them and smile...
You see, my child is loved so much... I would face any trial.
That same scar I trace with my finger... (It's the door to her beautiful heart)
I never guessed how much I'd love her... (Just as YOU loved her right from the start)

A heart mom is always a heart mom... (Now wise beyond her years)
And for those who have angels in heaven... Our hearts share in all of your tears.
Everyday I will strive to remember... You chose me for her (and no other)
And I will embrace that beautiful day... When I became a "heart mother".

~Stephanie Husted

Family Update

It sure has been an eventful month! Our family has had so many changes in the last few weeks and we've all been very busy! I still can't believe it, but we have moved back to Georgia. This is a change we made due to Brooks' job and it is wonderful. He is now working from home and traveling more, but he's still working for the same company. It's really nice having him around during the day. I know he's enjoying it, too.

We left Alabama the last weekend in August. It was a pretty uneventful move, but like anyone knows, moving is stressful in and of itself. This is the first move we've had to make with kids, which makes it that much more complicated. Anna Brooke is still asking when we are going back. Poor thing--it seems as though she is not a fan of change. Emma Kate is doing well, other than having an ear infection at the moment. We met with her new cardiologist and pediatrician a couple of weeks ago. I'm so glad we went ahead and made appointments with them as soon as we got here. I just wanted to be sure we knew our new doctors, in case something were to happen.

I am glad to be back in Georgia. We're a lot closer to family and friends, which is wonderful. It kind of felt like we were on an island when we lived in Birmingham, even though we had my sister nearby. Other than that, our closest family members were at least two hours away. Now they are no more than two minutes, which is super nice! (We do miss our friends, though! Hi, Reynolds!)

Part of me lately has been kind of missing Birmingham. I guess it is not really the place, its more the events that happened while we lived there. Brooks and I spent the majority of our marriage there; both of our girls were born there. Anna Brooke and I spent so much good quality time together for her first two and a half years while we lived there. It was such a fun time! I think about that pretty often now. Hopefully I will be able to get AB in to a preschool pretty soon (if there are still any openings) and that will give Emma Kate and I some focused time together. That has always been really important to me. I realize a lot of moms aren't able to be at home with their kids full time, so I never want to take that for granted and spend as much time as I can with my girls.

Today we discovered our local library. It was fun! We made it just in time for story time. There was another little girl there, who was maybe a year and a half I guessed. The woman with her (who I assumed was her grandmother) asked me how old EK was. When I told her 13 months, her mouth fell open and she just stared. Seriously. Finally, after what seemed like five minutes of staring, she said, "But she's so tiny!" I just said, "Yes, she is." But what I wanted to say was, "Uh, yeah!! She's also had two lifesaving operations, not to mention another stint in the hospital for almost a month!" She also asked a series of other annoying questions, such as how many teeth she has (does this really matter?) and blah blah...

I don't know why it got under my skin so badly. Maybe its because I actually am a little worried about her size. She's about 17 pounds and she's 13 months old, which apparently is not even on the growth chart, according to the doctors. But she's come so far, so its hard for me to feel bad about it for long. And actually, I secretly like having a small baby. It just makes me feel like I can hold her for longer. Is that silly? I better wrap this up because it is storming pretty bad. Did any of you other heart moms have smaller babies and get annoyed with people for commenting on their size?

Angel Cali

Dear Friends,

There is a family who has been on my heart a lot on the past month or so. Adrienne and Thomas Orrock had their precious little girl, Cali, on September 5th. A few months before she was born, she was diagnosed with HLHS. Adrienne and I have been in contact for a while now, through e-mail and Facebook, and I could tell she was so very excited to become a mom. After Cali was born, she fought so hard every step of the way, but after just a short week, she returned to heaven.

I am absolutely heartbroken over this and wish that I could do more for this sweet family. I wanted to ask you, friends, to pray for the Orrocks. I cannot even pretend to know what they are going through right now, but I imagine that their grief is so overwhelming and I know that they would welcome the prayers and support. If you would, please bless her family through your prayers. You can read Cali's story here.
Adrienne and Thomas, you and your family are in my prayers and thoughts. I know that Cali felt your great love for her in her short life. Blessings to you.