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By admin, on January 27th, 2012
Many of you may not know that February 7-14 is Congenital Heart Defect Awareness Week. There is a great board on Pinterest right now to help highlight this – check it out here: (http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/)
I figured it was time to repost some info about CHD’s and how it is an honor to share my trials with other families who have heart warriors and heart angels. Our heart warrior, Grace, just celebrated her 8th birthday!
When Grace was born (click here to read her story), she had a Coarc repair done at 4 days old at Children’s Hospital of Milwaukee. She currently has an ASD, VSD, PFO, and Bicuspid Aortic Valve that are monitored yearly. Thankfully she is doing well at the present time and is active, although no contact sports allowed. We do know that at some point she will most likely need an additional surgery to repair her valve, but for now we are just thankful to have her with us!
Here is some info about CHD’s:
- Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
- Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Though research is ongoing, at least 35 defects have now been identified.
- 4-8% born with CHD have Hypoplastic Left Heart Syndrome
- 4-10% born with CHD have Atrioventricular Septal Defects
- 8-11% born with CHD have Coarctation of the Aorta
- 9-14% born with CHD have Tetralogy of Fallot
- 10-11% born with CHD have Transposition of the Great Arteries
- 14-16% born with CHD have Ventricular Septal Defects
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes
By admin, on January 25th, 2012
So, as always life has been very busy. We took Mini down to Wisconsin Dells for her birthday. It’s always important to do something special for the girls because outside of some phone calls the only thing they get for their birthday is whatever we give them. Kind of sad but what can you do? We decided to stay at The Wilderness again because we stayed there last year and had such a good time. We got one of the birthday packages because she was supposed to get a monkey with an eye patch (monkeys are her favorite) but instead of a monkey she got a parrot that attaches to her arm, Daddy helped her name it Petey. She also got some other goodies to go along with it and I bought Beans a stuffed tiger so she wouldn’t feel left out. It is go, go, go when we are there and there was no talking them into going down any of the big slides this year – I think last year scared them a little too much:) But, we did get them agree to hop on some inner tubes at the wave pool and they really had fun…more fun than I think they thought they would.
Tonight is week 2 of their theater practice for Charlotte’s Web and tomorrow we are heading over to the Valley Academy for the Arts to check out their dance program. We are also going to look into the Badger State Girl’s Choir for Mini (Beans is too little) and will be signing them up for swimming as well (this through the rec department). Staying busy is always a good thing and giving the girls these opportunities is extremely important to both of us, they are so special and I want them to be as well rounded as possible. And with Mini’s limitations when it comes to sports, I try and find things that she will enjoy that also enrich both of their lives.
So, that’s all for now but will be back soon!
By admin, on January 9th, 2012
Once again it has been way too long since I have written anything here. This week is always hard as it reminds me of the worst (and best) day of my life. 8 years ago today is the day that Grace had her open heart surgery. It is hard to believe that so much time has passed when it is still so vivid in my mind. How could you ever forget watching the monitors beep and drop and watch the nurses and doctors rush in to perform CPR and bring her back? Especially when it was something that happened multiple times? I will NEVER forget the sound the monitors make when they are hooked up in the ICU and remember turning to my hubby saying, “There she goes.” It makes my heart hurt to think too hard about it, but also remember Nana and Cari being there for us…what some angels!
Thankfully our little Mini is doing well and we have a little bit of a breather before we have to worry about whether she will need another surgery or not – this is something that will be determined as she gets bigger and her body has to start to pump the blood to a larger area. Even though this was a horrible time for us, we are so blessed to have our little girl here with us and able to do almost everything that other kids can do (no contact sports though). It certainly could have been so much worse.
This weekend we are heading to the Wilderness in Wisconsin Dells to celebrate her birthday – we had a small cake and ordered in Chinese and just spent time together on her birthday. It should be great to go down and spend time together, we always enjoy it down there.
So, off to play the Xbox and see if Beans can get her groove back. I’ll try to write more often. Here’s a recent picture of the girls:
By admin, on August 9th, 2011
So, once again it has been much longer than I wanted in between posts. I don’t believe that we have ever been this busy, and while that is a good thing it does leave us pressed for time. Sprinkle in Grace having tonsillitis three times in the past few months and it has been a pretty rough summer for her. After seeing her doctor last week the decision was made to send us to a ENT doctor in Green Bay to discuss having them removed. I understand that it is a pretty simple procedure, but with her heart defects my worries increase greatly. I don’t want her to be put under again, don’t want the stress of worrying about how her heart will react, don’t want her to be in pain, etc… But, after seeing how sick she has been with this, I also don’t want it to continue. So off we go.
We went to Packer Family night last week Saturday. As some of you may know, I am NOT a Packer fan, unlike my hubby. I can totally appreciate that they are the Super Bowl Champs and that I am fortunate that I live less than 1/2 hour from Titletown. I think part of the reason I have never been a Packer fan is because the fans are so insane! We bought jerseys for the girls (Rodgers and Matthews) and headed to Green Bay. It was 87 degrees but thankfully our seats were in the shade. The kids were excited to be able to see it from the inside – it is hard to explain how big it is to them until they are actually there. We grabbed some drinks and popcorn and headed to our seats. They had some dancing and music playing and the Packers came out and scrimmaged for about 20 minutes or so. We were then informed that a large storm was making it’s way through and that we would all have to go to the concourse until it passed – about 30-45 minutes. 40 minutes in we realized that there was no way this storm was ending any time soon and decided to head across the street to Kroll’s to grab something to eat. At this point, Grace had had it. She is still on meds and just wanted to go home. Unfortunately our vehicle was parked on the complete opposite side of the stadium and it was still raining. We didn’t have any choice, so out into the rain we went. Got SOAKED and saw them light off the fireworks in the rain. Overall it was a total bust and not something I would do again. We’ll stick with the Timber Rattlers, something we really enjoy as a family.
So, that’s what’s new in our world. I’ll keep you updated on the tonsils.
By admin, on June 27th, 2011
What a weekend! We have missed some Timber Rattlers games due to weather and/or the girls being sick so we decided to trade in some of our unused tickets for Friday night’s game. The girls were excited because the Zooperstars were going to be there.
 
These “creatures” scare my sister, Hailee. There is a monkey one that is named Spanky (it doesn’t belong with this group but is very similar) that travels with Reggie, a purple monster that entertains the crowd a few times a year at the games. It was at a game she attended and she freaked out…it was funny. It was a fabulous game – they won in the bottom of the 9th and the girls had a blast as always:)
 
Fireworks were part of the game at the end which the girls always love. Lately, Mini has been looking for signs of Nana everywhere we go. She really misses her and looks to see if she can see her…somewhere, anywhere, it doesn’t matter to her. One of her favorite “signs” is the most beautiful firework – she always says, “Look Mom, that one is from Nana!” It totally melts my heart, and puts a smile on my face. I love the fact that Nana was such an important part of their lives that they try to hold on to every memory they have. Kind of the reason for having this website.
It was a late night when we got home and we didn’t get to bed until after 11. We knew that Saturday was going to be another busy day but no one really slept in late. We got up and got going pretty early. Saturday’s for us usually involve two things. The Farmer’s Market and rummage sales. Not sure what hubby and the girls would do without Mai’s Chicken Wings – their favorite thing at the market (click the link to check these out – they really are something). We bought some nice fresh strawberries and shell peas, and also some dips from Chics N Dip – another great local seller. Tons of people milling around as always, but that’s ok – we love it!
After that we decided to hit some rummage sales. The girls always enjoy doing this with us and now that they have their new purses and allowance they love looking for things to buy. Found some really cute Paul Frank t-shirts for them and they of course got some new “babies”. Seeing as how it was our 12th wedding anniversary we decided that we would go out to Red Lobster for lunch. This is a favorite restaurant for us but one we don’t visit too often as it is pretty pricey. But, we promised each other that we wouldn’t get anything so thought this was a good way to celebrate. We decided to order whatever we wanted and had a wonderful lunch with our two little peanuts. Spending time as a family really can’t be beat.
After we ran home to feed Kodiak and make sure he was all set and off to the game we went. It was Storybook Princess night and the girls were thrilled because they got to have their picture taken with Snow White and Cinderella. Unfortunately the T-Rats lost by a run but the girls really get into the game. They have even started learning the players names and hollering for them when they are up. But, the biggest surprise of the game was when I saw my name on the big screen – wishing me a Happy Anniversary. So much for not doing anything for each other, lol! Tim wanted to do something special and he sure did – one more for him…and one less for me. Looks like I have some making up to do, now it’s just a matter of what to do that is extra special for him. Hmmmm… The night ended with fireworks again – a wonderful end to a perfect day.
And yesterday, you guessed it, back to the ballpark. I had a feeling that we wouldn’t make it for this whole game as the girls were getting pretty worn out but it was a Webkinz giveaway so I knew there was no way we weren’t going at least for a little while. They each got new baseball caps as well, can you say spoiled? I wouldn’t have it any other way. Why work if you can’t provide for your family like you want to? Once again, they were thrilled because they were able to get Reggie Keen’s autograph…and Fang’s. On the 16th of July they actually have a Pizza Party with the team and will be able to get the rest of the signatures, but they think it is so cool to do it. We didn’t stay for the whole game, they were warm and I was sunburned (I’ll never learn) but we did have a good time. Poked around the mall after and then headed home to end the night. We were all pretty beat but it was such a fabulous weekend I don’t think any of us would have changed a thing.
Now – back to reality…and work. Hope you all are well!
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