Wednesday, February 24, 2010

She did it!!

Congratulations Rebecca!! Neil and I are so pleased with Rebecca and all her hard work in school. She had her doubts about getting accepted into BYU, but she did it!! She also had her doubts about a good scholarship, but she did that also!! On Monday she received her scholarship letter from Chadron State and it is pretty close to a full ride scholarship. She is still waiting to hear from BYU about scholarships before she makes her final decision. What a grand adventure the next few years will be for her. Just so you know Rebecca, we are both so well pleased with your accomplishments!! You are a wonderful daughter!!! We love you!! Mom and Dad

Saturday, February 13, 2010

Three beautiful teenage girls in one house?

I can't believe we are old enough to have three teenagers at our house!! But, it's true. Our sweet Julia has turned 13. Julia is such a sweet girl. She is always asking how she can help or saying thank you!! She really does bring us much joy. I must admit that I enjoy having teenagers.

Julia was very excited about the new digital camera she got for her birthday. I teased her that I would trade her cameras. Hers can do cool things like editing pictures right on the camera. She will enjoy it I am sure.

She made her own cake again this year. Her Death by Chocolate cake was delicious!!

Happy Birthday Julia!!! We love you!!

Friday, February 12, 2010

CHD Awareness Week

This is CHD Awareness week. I didn't used to think about Congenital Heart Defects. I guess we each know that things can go wrong during a pregnancy, but I never really thought about it the way I do now. We have learned so much as a family on this journey through Congenital Heart Defects. We are grateful to those who have spent time and energy studying the heart.

Here are a few facts about CHD.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

We need to spread the word. Be aware of signs and symptoms. Be a registered organ donor. Too many children die while waiting for the heart that never becomes available. Don't take for granted the time that you have with your loved ones. Consider a donation to a foundation that supports CHD families and research.

I found this poem written by another heart mom. I haven't had to deal with everything this poem mentions, but we have learned about a lot of them. Our lives have been forever changed because of our journey into CHD. Joshua was born with tricuspid atresia(the right side of his heart didn't form correctly), TGA (His great arteries are on opposite sides of where they should be) and a VSD (A whole in the ventricle of his heart).

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held him, I'd waited so long,
It's knowing that I need to help him grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do his nails look blue?
It's cringing inside at what he's been through.
It's dozens of call to his pediatrician
She knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching him sleeping his breathing is steady.
It's surgery day and I'll never be ready.
It's handing him over, I'm still not prepared,
It's knowing that his heart must be repaired.
It's waiting for news on that long stressful day,
It's's hoping...that he'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching him chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's a brave little boy who loves Thomas the train,
Or a special heart bear or a frog in the rain.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day. This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

Wednesday, February 10, 2010

Dallin's skateboarding tricks

We aren't sure where Dallin learned about skateboarding and the ability to do tricks while skateboarding. (Probably watching the teenagers at the skateboarding park across the road from the baseball fields) He loves to pretend he is skateboarding. He will do tricks over and over. He always wants someone to watch him. He will keep performing tricks until he gets it perfect in his opinion. The other day while he was imagining he was a skateboarder we decided to catch him on camera. It was so cute to watch!! I hope you enjoy seeing his imagination and skill as a skateboarder. He knows all the safety equipment and in the beginning he is putting on his gloves, wheels, and helmet. While I am not sure I like the idea of him liking skateboarding and I'm not sure this looks good for his teenage years at least I can take comfort in the fact that he knows a helmet is important. Hope this video makes you smile.

It Must Be February

Well February must be here again. Traditionally in our family February is the month of sickness. It seems like someone is sick from the first day until the last day of the month! It was a blessing that last year when we brought Joshua home we stayed healthy. This year is a different story. Right now MaryAnne, Dallin and Joshua each have ear infections is both ears. The doctor at the Urgent care clinic on Monday said that MaryAnne and Joshua have the worst ear infections she has seen this year. Having six bad ears makes it interesting to keep up with antibiotics and pain relief. Hopefully, I am getting the right medicine to the right child at the right time of day. I am grateful for modern medicine and the relief it can give my children. They are starting to feel better and hopefully Joshua will start to sleep better again soon. Life is good!!!

Wednesday, February 3, 2010

There's No Place Like Home!!

One year ago today we brought Joshua home!! After six weeks in Utah I can agree there's no place like home. We were so grateful to stay with Mom and Dad.

We appreciated them letting us move our family in with them while Joshua was in the hospital. Thanks!! It would have been so much harder without a home away from home. We were glad to finally bring him home though. As you can see the girls were so excited for their first look at Joshua sleeping in his own bed at home! He already has a fan club at our house. This picture of Joshua ready to leave the hospital is one of my favorites. To me he looks like he is thinking let's hit the road and go home!