Our CHD Angel

Sweet Lila Rae

A glimpse of sweetness,

Precious moments of love,

Then our sweet little Lila Rae,

Was taken to heaven above.

God shared with us a miracle,

to hug, hold, and love.

He gave to us, our Lila Rae,

with blessings from above.

Her stay with us was very short,

her heart was just too weak.

So God took his precious angel

to sit at Jesus' feet.

We'll meet again in heaven,

with no sickness, and no pain.

There we'll see our angel, Lila Rae,

and her precious smiles again.

Cheryl Mullis

In memory of our beautiful Lila Rae on this last day of CHD Awareness Week 2010.

Please don't forget all those babies effected by these defects. Remember them and their families in your prayers. Thank you.

God is good....ALL the time,

Twas the night that you joined us...all eyes were on earth.

Awaiting with joy for a most special birth.

The angel's stood ready...for each need and care,

But all of them knew... that the Lord would be there,

And I labored on... and daddy was scared,

We waited...and wondered... and hoped we'd prepared.

We knew you were special...but so very sick,

Yet hope had grown in me... with every kick.

And soon it was time...into this world you came,

I heard a soft cry... then I called out your name....

And God held your hands...while the angels stood by,

Since I could not hold you...they hushed your soft cries.

One small angel looked to the father and smiled,"Can you truly teach hope... through such a small child"?"An infant so helpless...a baby so new...

"Oh please tell me Lord...is this what you will do"?

God looked from the angel...to the baby's sweet face,

"Through him my young charge... they will learn about grace"."I penned this child's journey...quite a long time ago,"And through his great courage...

such true love will grow". "Every hair on his head has been numbered you see.."

"It's my hope that through him... they will learn to see me.

"Oh my little one with a special heart...""Great love will see you through.."

"See look that is your family..""They've been waiting for you.."

"I send you to their waiting arms...for a time we'll be apart.."

"But I'll always be with you...for I live within your heart.

And so we held you in our arms...And thanked our Lord above..

In you...we see the miracle,of His undying love.

So when it's Christmas morning, And I watch my children play,

I'll need no great reminders,For I see my gifts each day.

Stephanie(Mommy to Braeden, HLHS)

Don't you see that children are God's best gift? the fruit of the womb his generous legacy? Like a warrior's fistful of arrows are the children of a vigorous youth. Oh, how blessed are you parents, with your quivers full of children! Your enemies don't stand a chance against you; you'll sweep them right off your doorstep.

Psalm 127:3-5

God is good ALL the time,

CHD Facts

• 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

Thanks again for taking the time out of your schedule to read over these facts. Who knows, maybe you can help someone you know one day through the information you received today.

Be strong and let your heart take courage, all you who wait for and hope for and expect the Lord!

Psalm 31: 24

God is good......ALL the time,

CHD Awareness Week

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”.

He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work”.

But the little angel is still a little scared. He asks,”Will I be okay with only half of my heart?” Jesus replies,”Of course you will, I have other angels there that will help out, and you will be fine.” Then Jesus gives the angel more details about his plan.

He says “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart”.

“Enjoy your time with your family, play and laugh everyday.” “And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”

Author Unknown

Pulse Oximetry Screening on Newborns

Eight months pregnant with Lila Rae




this is one of the many tests that were performed on our Lila Rae. however, there are too many babies who don't get this simple screening. please take the extra measures to make sure this test is done one your little ones.

Pulse Oximetry Screening on newborns



A test that measures oxygen levels in newborns can detect "critical" congenital heart disease, but there are variables involved with the test that require more study before it is adopted for universal newborn screening, according to a new joint statement from the American Heart Association and the American Academy of Pediatrics.


A critical congenital heart defect is one a child is born with that requires surgery or catheter intervention in the first year of life, such as Tetralogy of Fallot and Coarctation of the Aorta, among others. The benefits of the oxygen test, called a pulse oximetry screening, outweigh the risks, but the best way to implement pulse oximetry screening is not well established by research.


Thus, the organizations affirm that the test can be used at a physician's discretion, and call for more research to determine whether the test should become part of the routine assessment of all newborns in the United States.


In the research reviewed, the test's ability to detect critical congenital heart disease varied widely, from zero to 100 percent. According to the statement, most studies that have analyzed pulse oximetry in newborn screening were relatively small, and screening protocols differed with respect to both age at screening and cutoff levels for an abnormal screen. A normal oxygen reading is between 97-100 percent. Because oxygen levels in healthy newborns can vary considerably in the first 24 hours of life, the authors note that testing after 24 hours would appear the best strategy. False positive rates were just .035 percent in infants screened after 24 hours. "The statement is important because there hasn't been any strong guidance so far regarding the use of pulse oximetry as a diagnostic technique in newborns," said William T. Mahle, M.D., FAAP, chair of the writing committee and associate professor of pediatrics at Emory University School of Medicine in Atlanta. "Some hospitals across the country have adopted it and others haven't, so we wanted to review the available evidence and offer a consensus opinion on the topic."


The test potentially can identify significant or life-threatening heart defects that may otherwise go unnoticed or at least unnoticed before a newborn is released from the hospital, Mahle said. Early identification of certain defects is important, and can allow doctors to begin appropriate treatment or transfer to a specialty hospital.


Pulse oximetry was developed in the early 1970s, based on the fact that red blood cells that carry oxygen absorb different wavelengths of light vs. those that don't carry oxygen. Oxygenated blood cells absorb infrared light, while deoxygenated cells absorb red light. The test measures how much oxygen is in blood that flows through the arteries. Arterial blood oxygen levels are measured by a device with a thin wire, tipped by a small red light. The wire is taped to an infant's foot for a few minutes to obtain a reading. In older children and adults, pulse oxygen is often measured by a device clipped on a finger.


The overall cost of the test is reasonable, and is about the same as the cost of other newborn screening tests.


Source: American Heart Association, 07-07-09

Then the light of my blessing will shine on you like the rising sun. I will heal you quickly. I will march out ahead of you. And my glory will follow behind you and guard you. That is because I always do what is right.

Isaiah 58:8

CHD Awareness Week

CHD Awareness Week February 7-14, 2010

For those of you who don't know this is a cause near and dear to my heart. It was three short years ago that my sweet Lila Rae was diagnosed with a CHD. Unfortunately, she had a rare CHD, Hypoplastic Left Heart Syndrome, and died at 6 weeks of age.

This week I want to share with you some things about CHDs and its victims. So please check through out the week to learn something new about these defects.

Also, Cory and I will be wearing red ribbons this week to support the awareness. Please feel free to do the same!

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, newborns are not routinely screened for CHD. The consequences of a late diagnosis can have serious, lifelong implications, so it is important for the public to be aware of the signs and symptoms in newborns, and children.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured".
  Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists. ***

* American Heart Association: Statistical Update 2001
** American College of Cardiology, 32nd Bethesda Conference: Care of the Adult With Congenital Heart Disease
***Report of the National Heart, Lung, and Blood Institute Working Group on Research in Adult Congenital Heart Disease, 2006