Peas

Jack has a funny appetite. All the books say that most kids like fruits first, but not my Jack. He hates them. I tried to give him peaches this morning and you'd think I was offering him lortab. So far the only thing he will eat all by itself and not watered down with ceareal 'til there's hardly any taste is peas. My guess is it's because of all the medication he has to take that have fruity flavors. Peas taste as little like medicine as possible. Did any other heart moms find their kids had an aversion to sweet flavors?

On another note, Jack finally rolled from his tummy to his back all by himself for the first time today!

A Tall Drink of Water

This afternoon my mom and I took Jack on a nice long walk in beautiful sunshine. When we got back to my mom's I got us both a glass of ice water and brought it into the living room where my mom was holding Jack. Jack saw the glass of water and got super excited. He grabbed for it, pulled it to his mouth and started chugging straight from the cup.

Uhhh...when did my baby learn to do that? I've never offered him a cup before. He's never even tried a sippy cup, or water for that matter. Just milk and bottles. He was a little messy but actually did a fairly good job. Crazy kid.

More prayers for the Gracie's

I was so excited all morning after learning that after just 3 days on the transplant list Gracie Gledhill was about to recieve her heart. Unfortunately things haven't gone well and she either got a bad heart or is in rejection and things are not going well. Please remember her and her family in your prayers.

Then I read that Grace Gourley is back in the PICU with what they think might be an infection.

Oh, sweet babies. They are a constant reminder to each of us how precious every moment should be. How grateful I am for the gospel of Jesus Christ and the peace it brings during trials and I pray that these families will be strengthened and blessed.

Can't Help Lovin' that Man of Mine

What a ham Jack is becoming.

Ha!

Just as a follow up to my last post...

This morning Jack decided he wanted to get up and stay up at 4:30. Heck no! After several attempts to get him back to sleep to no avail I finally pulled out the "Jackson Thomas Hardy!" in a very stern mommy voice and let him know that it was time to go back to sleep and no one would be coming in to rescue him until at least 7:00. I closed the door to his room and didn't hear a peep until 7:45! Small victory, but I'll take it.

5:20

Can anyone tell me how to convince a 6 month old that 5:20 AM is entirely too early to start the day?

Before his surgery Jack used to get up between 7 and 8 AM. Loved it. After his surgery he apparently caught on to the 6:00AM xray schedule at the hospital and has been getting up around then, which I don't care for but could at least kind of tolerate. But lately he's bumped it up to 5:20 and no amount of swinging or crib entertainment can convince him otherwise. He's just lucky his dad likes him so much and got up with him this morning because I was ready to let him whine to his little half-hearts content for another hour before going to his rescue. I keep trying to explain to him (as I lay curled up under a blanket next to him and his toys at the crack of dawn) that his mom will be a much happier and patient person if he would just sleep until 7:00, but that big smile and those busy feet stubbornly insist that he's ready to be up.

Red Sox Baby

For Christmas Jack's awesome Aunt Gwen got him this video - "Red Sox Baby."
It's all about training the next generation of Red Sox fans (just like daddy). Plus it teaches shapes, colors, numbers and the basics about baseball. Super cute video.

Jack and I had watched it before but he hadn't really paid much attention. Well, not today. He finally got it and was totally captivated. I don't think he blinked for 10 minutes.

When he did finally look away he was all grins.

Thanks Aunt Gwen!

Sunday Best

Jack's dad spoke in church today and did a very nice job, so of course Jack got all dressed up in his Sunday Best and got to go listen. He was very handsom and mostly well behaved. We only had to step out into the hall twice. He's not used to this whole church thing. As soon as RSV season is over we'll give him a lot more practice.

Prayers for two Gracie's

Two Grace's now need all our prayers.

Grace Gourley is still in the PICU after her Glenn and still on the ventilator after her lung collapsed.

And now Gracie Gledhill is in possible heart failure with blood clots and needs a new heart ASAP.

Oh, how we pray for these sweet babies every night and ask for special blessings on their doctors and nurses that they will be guided in their care.

Nothing to Report...

....Other than that I think my kid is seriously cute. I know I'm totally biased, but I just adore him. Even his war wounds make him all the more adorable in my book. I just can't get enough.

Jack was even able to attend his cousin Riley's 10th birthday party and go to one of his dad's basketball games (Hardy coaches boys high school basketball) this past weeked. He thoroghly enjoyed them both.

This is the valentine pillow I got for Jack. I couldn't resist the heart, and my favorite thing to tell him is "You're Cute" so it was perfect.

And even better, it doubles as a great tummy-time pillow. I'm still a little reluctant to do too much tummy-time since we are only 3 weeks post-op, but with some nice cushioning, he's been doing pretty good.

CHD Awareness Week

February 7-14, 2009 is Congenital Heart Defect Awareness Week. As this subject is now very near and dear to my heart, here are a few things I’d like you all to be aware of.

• A Congenital Heart Defect (CHD) means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels. There are approximately 35 different types of congenital heart defects.

• CHDs are the #1 birth defect in America, affecting approximately one in one hundred or 40,000 newborns every year.
  Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect -- of those, 87 will be born with a congenital heart defect -- that's more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)

• CHDs are responsible for one third of all birth defect-related deaths, and sadly 20 percent of children who make it through birth will not survive past their first birthday.

• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

• For many children a new heart is the only option, but only about 30% of the children who need a heart transplant receive one in time. In 2007 there were 327 pediatric heart transplants performed in the United States. The average heart transplant only lasts around 10 years.

What can you do?

RAISE AWARENESS

DONATE BLOOD

REGISTER TO BECOME AN ORGAN DONOR!

We hope and pray that Jack's heart will last for a very long time, but the day may come when he will need a new heart. Hopefully by then they will have come up with a way to grow a heart or some other medical miracle, but that will only happen if the right people get the funding to find a solution, and in the meantime there are lots of children waiting for that most precious gift.

We've come a long way, Baby

Six months ago today we welcomed sweet Jackson into the world. It's crazy to think that he is that old and has come so far. So much was unknown at that time and I remember sitting by his bed wondering what the future would bring. Now here we are, 6 months and 2 open heart surgeries later and life is better than I ever could have imagined. Jack is fat, happy and healthy (for a kid with half a heart :)

Our lives have been changed forever for the better. We have been entrusted with the care of one of Heavenly Father's choice spirits and have witnessed miracles along the way as we've learned to put our trust in the Savior and his plan for Jack.

I can't wait to see what the next six months will bring.

Happy 6 Month Birthday Jack!

Happy Dance

This was Hardy and I at Jack's cardiology appointment today when they told us we could get rid of the oxygen!

We are officially TUBE FREE! Jack's enjoying it so much he's been talking happily non-stop since we took it off. I feel so free and normal!

And almost equally good news - we don't have to go back to cardiology for 3 months! What a change from every 3 weeks. Love it.

They are still a little concerned about the size of Jack's aorta, but said that it is not a problem that will manifest itself overnight so we will just keep an eye on it. He may eventually have to have a stent put in or have surgery to fix it, but hopefully it will just grow and be fine. In the meantime, I'm not going to worry about it. We'll get there when we get there. But for today, we are fabulous!

(I keep walking up and down the stairs with Jack, just because we can. He's even had a bath so he's not only cute and tube free, but he smells good too. What a guy :)

Incision

Getting better every day.

This was Jack's scar on Saturday. The flakey stuff is the dermabond glue Dr. Kaza uses to close the incision.

This is his scar now that the glue has all come off. Looking pretty good. Just don't take a whiff. He can't have a bath until after his post-op tomorrow so he's a bit stinky. Sponge baths are ok, but he could use a good soak and scrub.

Prayers for Gracie and Perspective

Sweet Grace Gourley went in for her Glenn today (the same surgery Jack had 2 weeks ago) and she's had some complications. She is such a fighter and came back from major complications with her first surgery, but please keep her in your prayers.

Jack had his 6 month check up today and got his vacinations and RSV shot. As a result he was clingy and whiny all afternoon, and since he got me up at 6:00 this morning I was tired and short tempered. As I tripped over his oxygen tubes and fought to get all his daily medications through his clamped lips I started feeling a bit sad and frustrated about Jack's condition, wishing he was just healthy and normal and we didn't have to go through all of this.

Then I read that Grace was struggling with her surgery. And I read about Owen and all he is going through just to prepare his body so he's even a candidate for a heart. In relative terms, Jack is the healthiest half-heart kid I've heard of. It puts it all in perspective and makes me feel bad for complaining. I still may cry to myself if they tell us Jack still needs oxygen after his appointment Wed, but I will not take his good health for granted.

(btw- Jack lost a little over a pound in the hospital, but according to the pediatrician's scale it looks like he's starting to gain it back and he's back to what he weighed at his last RSV shot 4 weeks ago. Dr. M said he looked great.)