Caleb's Heart Story: A Life Taken Too Soon

Tuesday, January 25, 2011

A Life Taken Too Soon

Samuel Louis

Since Caleb's death, I have been overcome with gratitude. So many showed their support and love to us, many of them being people I have never met. They are part of our CHD community, knowing all too well the ups and downs of this battle. Our kids battle life, right from the bieginning, fighting their hardest each day just to be here with us. After Caleb passed, I have had this strong want. To reach out to others, keep up with prayer, and let them know they are not alone. To try and give them encouragement...a ray of light...a piece of hope. I started to look for others who are going down this road.

One of the blogs I stumbled upon, was my dear friend Carlen. I began following along with her pregnancy of her much awaited baby boy. As his birth was quickly approaching, I gave her my number, letting her know that she could call or text me anytime. I realized I was just some random person far away, but I felt a connection with her. Knowing that her HLHS journey was just about to begin, and that I know how alone it can feel.

We began texting, and she would send me updates on little Samuel. He was a little chunk like my Caleb. :) And perfect in every way. Before long, he was 9 days old. I was praying nonstop, knowing that surgery would likely be soon. She let me know it would be that day, and I got the prayers rolling in from everyone I knew. My phone was glued to me all night. I wasn't prepared to get the text telling me my biggest fear. Samuel had left this Earth. I bawled. I yelled. I cried and shook my head. I didn't understand. Another life taken too soon. It just doesn't make sense. Just like Caleb being gone.

People will say, "He's in a better place now."... "No longer in pain..." or, one of my favorites, "God must have needed a little angel...."

Umm...NO. I don't agree with that. Why is here not a better place? How do you know he was in pain? Needed an angel? God has angels up there with him. Caleb will be in Heaven as himself, not some flying angel. I know they are trying to lessen the hurt, and not sure what else to say. But those just aren't things to tell a mother that has just lost her baby.

My heart continues to break for all of those that suffer the loss of their baby. I wish my path had crossed with Carlen under different circumstances...but I was given the chance, and blessing, to get to know her, and try to be there on this journey.

Our precious little Boy,

We will always know your face.

In our hearts and stars forever,

You will always have a place. ~Unknown

4 comments:

DanielleJanuary 25, 2011 at 1:53 PM
I'm so heartbroken for Carlen, too. I wrote a very similar post about our CHD community after I learned of Sweet Samuel passing away, but haven't posted it yet. I feel that we are called to be there for others, too... we can't walk away from CHD just because our children are no longer on earth. There's no way to know what to say or how to comfort someone who has just lost a child until you have truly walked that path yourself. The child loss community is a whole different world once you step into it..
Prayers and love to you and sweet Caleb <3
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Rachel MayJanuary 25, 2011 at 2:14 PM
I am so sorry to hear of another child passing. Wish I knew what to say or how to help you. Just know you are in my thoughts of everyday and how I pray for you, the family, and the CHD community!!!
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Kathy KJanuary 26, 2011 at 6:16 AM
It's actually been a terrible month for HLHS babies on 1/24 a sweet little Wyatt also passed away from complications after his Glenn. It's such a horrible disease. I'm terrified to be in your position, but you ladies are so strong that it's humbling.

Thanks for giving others strength through your writing. Heart Hugs
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LaurenJanuary 26, 2011 at 7:07 AM
Kathy-
Yes, many babies have recently lost their battle with HLHS. I was praying for Wyatt, and so sad to hear the news.
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CHD Facts

What is a congenital heart defect? A congenital heart defect is an abnormality in any part of the heart that is present at birth. Heart defects originate in the early weeks of pregnancy when the heart is forming. About 35,000 infants (1 out of every 125) are born with heart defects each year in the United States (1). The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger.

Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths (2). However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects. In the United States, about 1.4 million children and adults live with congenital heart defects today (3). Almost all are able to lead active, productive lives (1).

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.

Did You Know? Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.

Hypoplastic Left Heart Syndrome (HLHS) is a condition in which the left side of the heart is underdeveloped. Usually, the left ventricle, the left atrium, the mitral valve and the aorta are affected. It is called a syndrome because it can encompass several different variations and varying degrees of development of these parts of the heart.

Babies with HLHS do not have problems while in the womb - it is only after birth that the heart fails to work properly. This is because all babies receive oxygen from the placenta while in the womb, so blood does not need to go to the lungs. In addition, there is an opening between the pulmonary artery and the aorta, called the patent ductus arteriosus (PDA) that is present in all babies. It allows the blood to go from the right ventricle out to the body, bypassing the left side of the heart.

Ventricular Septal Defects (VSD)
It is a hole in the wall separating the two lower chambers of the heart.

Coarctation of the Aorta (COA) It is a narrowing of the major artery (the aorta) that carries blood to the body.
Coarctation of the aorta occurs in about 6 to 8 percent of all children with congenital heart disease. Boys have the defect twice as often as girls do.

Large Patent Ductus Arteriosus Patent ductus arteriosus (PDA) is a condition in which a blood vessel called the ductus arteriosus fails to close normally in an infant soon after birth. (The word "patent" means open.) The condition leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels surrounding the heart.

ASD-PFO
A patent foramen ovale (PFO) is a defect in the septum (wall) between the two upper (atrial) chambers of the heart. Specifically, the defect is an incomplete closure of the atrial septum that results in the creation of a flap or a valve-like opening in the atrial septal wall.

Arrhythmia
An arrhythmia is an abnormal heart rhythm. There are many different types of arrhythmias that range from harmless to life threatening. An arrhythmia can be regular, meaning it occurs at evenly spaced intervals, or irregular, meaning it has no pattern.

Second Degree- Heart Block
only some electrical impulses reach the ventricles. The heart may beat slowly, irregularly, or both.
On an EKG, the pattern of QRS waves doesn't follow each P wave as it normally would.

All About Caleb Thomas

*Your feet were ticklish :)

*You didn't like when the nurses changed your diaper.

*You always had your head layed to the right side.

*You made the cutest little snorting noises.

*You loved your froggie soothie buddy.

*You always tried to pull out your oxygen- and succeeded numerous times. :)

*You had the softest skin.

*Your smell is still with me- I remember it exactly.

*You had the most adorable hair... with a reddish tint.

*While in the hospital, you shared a few toots with me... I won't tell :)

*You were the strongest person I have ever met. You are my hero.

*You were PERFECT.