20 CHD Fun Facts

1. Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
2. Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
3. 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
4. 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
5. 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
6. This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
7. The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
8. 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
9. Though research is ongoing, at least 35 defects have now been identified.
10. 4-8% born with CHD have Hypoplastic Left Heart Syndrome
11. 4-10% born with CHD have Atrioventricular Septal Defects
12. 8-11% born with CHD have Coarctation of the Aorta
13. 9-14% born with CHD have Tetralogy of Fallot
14. 10-11% born with CHD have Transposition of the Great Arteries
15. 14-16% born with CHD have Ventricular Septal Defects
16. 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
17. 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
18. Today alone about 106 Babies will be born with a CHD
19. Why do congenital heart defects occur Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects.
20. Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning. 
    

Wow What a Day!

Oh Wow what a day for the First time I think our House is 95% done I need to put away the Wash but it is all clean. Today I started to work but then my sisters came over and we decided to clean house lol!
I Went to My mothers today with Rylie and we made curtains for my baby sister they are really awesome! Rylie was trying really Hard to Crawl tonight I am hoping that we get there soon because I really want her to get a moving lol!
Mason is Having a Blast at his Grandma's house the past few days but I am Missing him so much.
Daniel is still in California I really wish I could have a fun trip like that even though I know he is training but I am still Jealous a Little It could be worse I could never be able to go any where!
I am working Hard on tutu's and Learning to make Pillow Case Dress hopefully i will have pictures up soon
all I know is I am sleepy and head that way thank you for Following My Rylie!

Bring home Baby

I can remember when we brought our little Rylie home,  Jan 24th, 2010 our life was falling into place it was everything a mother could have ever wanted well at least it was what I had alway wanted. Then it all Changed on the 29th we Rushed my Rylie to the Hospital that day I never thought that I was going to Bring her Home again, I am truely blesses to have brought my Little Princess home on June 15th! She had to open heart surgeries and one tummy surgery but yet she was still able to come home and since then we have been home.

Rylie Has grown by leaps and bounds she is amazing and my Hero I don't know why but it sounds weird to call my 6 month baby my Hero but she is. I have people ask me all the time how I do what I do.  To them I say I just do... so with that said I am no super hero I am A Mother!

For those of you that dont know here is the defintion of mother

moth·er1    

–noun

1. a female parent.

2. ( often initial capital letter ) one's female parent.

3. a mother-in-law, stepmother, or adoptive mother.

4. a term of address for a female parent or a woman having or regarded as having the status, function, or authority of a female parent.

5. a term of familiar address for an old or elderly woman.

6. mother superior.

7. a woman exercising control, influence, or authority like that of a mother: to be a mother to someone.

8. the qualities characteristic of a mother, as maternal affection: It is the mother in her showing itself.

9. something or someone that gives rise to or exercises protecting care over something else; origin or source.

10. (in disc recording) a mold from which stampers are made

so if you ask me i am just doing my JOB!

But Enough about that I just wanted to take this time to talk about all that Rylie has Accomplish in the few short months being home, she has started to sit up and she is starting to laugh it is weird because It feels like she is only 3 months old. I know that she isn't but it does feel like it i feel as if she is way ahead because we havent been home this whole time. 

Because we have spent so much time in the hospital it put her Big Brother in a weird spot! Mason is now three and has started to take a bunch of steeps backwards He has decied to stop acting like a big boy and start acting like a little baby I feel sorry for him because Mommy and Daddy have there hands full with the new baby. It is hard for him to have one of us alone because Daddy is a COP that works night and Mommy is a stay at home mom that is trying to open up her own Business to help with Bills and to keep her From going Crazy so When I am not Busy with Rylie I am Trying to do orders I dont know if I have learned how to Balance him and Work and Rylie. well sorry for Rambling on tonight but I feel like every body is up to speed and tomorrow night I will post a new post!  

Why Do a Fundraiser?

Rylie is a special little girl that was born with hypoplastic left heart syndrome which was undetected until she was 9 days old, because of this she and her family were rushed to Texas Children’s Hospital in Houston, TX . Rylie and her mom are now staying in Houston, TX which is about 120 plus miles away from Rylie’s dad who had to go back to work to help pay the bills. Rylie‘s little brother (age 2) has been hopping from grandparent’s house to another grandparent‘s house so it is very hard on him because it costs so much for him to see his family . Rylie’s mom is unable to return to work because she is in the hospital all day with Rylie. Since the family has lost their second income the bills at home have been piling up. Not only has the cost of living gone up with the family but so has the cost of having a very sick baby; on average it costs Rylie’s mom about $40 a day to stay with Rylie because it cost $12 a day (only if she doesn’t leave, it is $12 for every time she enters/leaves) just to park at the garage, then there is the cost of food and drinks. Anytime that dad comes down for a day it cost at least $60. If he is here for more than one day it that cost is greatly increased. That goes the same for Rylie’s Grammy that lives even further away and she tries to come and see her granddaughter at least once a week.

Unfortunately Rylie’s mom and dad didn’t have any money in savings (as most young couples) so now it has made it even harder on them to meet their financial obligations. Dad had just started his job at Grimes County Sheriffs Office as a Deputy in November 2009 and the family had to move to College Station. Because of this move mom had to leave her full time job of 2 years. Mom wasn’t able to find a full time job until the week before Christmas. This meant mom had no paid sick leave.






With the loss of income and having a very sick baby in the hospital the family has fallen behind on some of their bills. Dad has picked up extra security jobs to help ends meet but there is still a substantial short-fall each month. The Family is looking at a stay of at least six months in the hospital as Rylie is waiting to have the second of three surgeries. Even after being released home Rylie will be required to return to Texas Children’s for evaluation once a week.

So how can you help:

You can donate to the family in one of their several fundraisers that are going on now, or you can do a fundraiser to help them or even better you can pray for baby Rylie and her Family.

There are several events going on now on Rylie's fan page on Facebook, Join her Village and help suport her.

An update... still waiting. Prayers needed.

 Rylie in the hospital, waiting and praying for good news.

So the lead cardio doctor came to consult with me today and they are ordering an MRI of Rylie' heart to take a good look at veins supplying oxygen to her lungs. After the MRI the cardio team will meet and decide if Rylie will be able to have the 2nd bypass (Glenn) surgery. Pretty much, if Rylie is to have any quality of life that's the route we need to take. If for some reason she's not able to have the Glenn, it will just be a matter of keeping her comfortable with meds. Her ability to function with meds is short term. Please pray that we are able to have the Glenn.

Update 04.05.10

Rylie spent her first Easter in the hospital. Isn't she adorable?

The transplant doctor came by this afternoon with discouraging news. The antibodies are indeed coming from Rylie which means she is not a candidate for transplant at this time. The doctor said he's not ever seen antibodies this high in a baby as small as her. With that said, we are going to meet with the cardio team tomorrow to find out where we go from here. The transplant doc seemed to think we'd just go forward with the original plan, including 3 heart bypasses (she has already had the first). The second was to originally to be done between 3-6 months. The third sometime after age 2. Even though the news was grim we are keeping up our prayers and our faith in God.

Rylie and family were able to spend some time together on Easter. There are several fundraisers in the works for the Crenshaw family. Details to follow later tonight. Hope you can help!

Road blocks...

Pretty in pink...

The transplant doctor came to visit today and delivered some concerning news.

Rylie's tissue antibodies are indeed high which means she would reject a new heart. The doctor said this caught him off guard, and he even called several other centers for suggestions.

Tomorrow Rylie's mom is having blood work to see if the antibodies are coming from her. If they are the transplant team will be able to move forward toward transplant. If the antibodies are truly Rylie's then we have to go back to square one which means trying to regulate the heart function with medicine and completing the 3-step bypass procedures.

We hope that we won't have to go that route. As it stands now, we will be here through at least Easter which means our plans for celebrating at the zoo will be again postponed. Rylie's mom is completely frustrated with what seams to be an endless sea of road blocks. Hold Rylie and her family in your prayers.

Rylie's Story

Rylie Crenshaw is an 8-week old baby girl who was born with hypoplastic left heart syndrome (the left ventricle of her heart never developed).

This condition was not diagnosed during the pregnancy and she was released home after birth. At her one-week check up Rylie appeared to be fine; however, two days later she was in the emergency room, close to death.

She was transported immediately to Texas Children's Hospital in Houston, Texas where we were told children sent home with her condition do not usually live.
Rylie beat the odds.

She has already undergone open heart surgery but her heart is still only operating at 30 percent. She is now in severe heart failure and is currently waiting to be put on the transplant list.

Rylie's dad is a deputy with Grimes County and her mom is unable to return to work. Her mom and her 2-year old brother are currently residing at the Ronald McDonald House in Houston so that they are able to help with Rylie's care. Rylie spends some time at the Ronald McDonald House and some time at Texas Children's Hospital depending on her health.

Rylie is not allowed to return home because she lives too far from Texas Children's Hospital. Since her dad resides in College Station, Texas and her mom is residing in Houston, Texas it has created financial stress on their family (it is a 2-hour drive).

Mom spends the better part of her day caring for Rylie and when time permits she is making blankets for other patients at the Ronald McDonald House and Texas Children's Hospital. The monies raised will help cover the costs of travel to and from Houston, parking at the hospital (which averages $12 per visit), medicine not covered by insurance and other unplanned costs of caring for a very ill baby.

Help Rylie and her family.

To send a card to Rylie or her family, write to:
401 Harvey RD 3015
College Station, TX77840