Friday, February 27, 2009
Tuesday, February 24, 2009
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.
Sunday, February 22, 2009
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.
Friday, February 20, 2009
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.
Thursday, February 19, 2009
Tuesday, February 17, 2009
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.
Sunday, February 15, 2009
Saturday, February 14, 2009
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.
Tuesday, February 10, 2009
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.
Sunday, February 8, 2009
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?
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.
Thursday, February 5, 2009
Wednesday, February 4, 2009
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 :)
Tuesday, February 3, 2009
Monday, February 2, 2009
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.)