Caleb's Heart Story: Sorrowful Soul

Tuesday, April 19, 2011

Sorrowful Soul

So this weekend will be Easter. When did that happen? Since Caleb's passing, time seems to be slowly creeping by, yet flying past me. It hurts to think about what it would be like, to have him here. There would be another basket to fill with goodies, more pictures to take, another milestone to celebrate.

We received an invitation in the mail a week back or so, asking us to come to Cincinnati Children's for a Service of Remembrance. I haven't been back there since we went and picked up his medical records. I mailed it back that day, we are going to go with Kailey. We can bring a memento of Caleb, such as a picture. They will say his name, and light a candle for him as well. It's going to be so heartbreaking, but I would like to go.

3 days just isn't enough. No amount of time is when you lose your child. It's so hard that I sit here with so many thoughts of what we didn't get to experience with Caleb and share. No diaper change, bottle feed, snuggles, rocking to sleep, coming home, meeting his big sister and others that cared for him.... I could go on forever. It's been close to 7 months now that he had to leave us, and those 3 days are in my mind, clear as ever.

Love you sweet boy. I know that you're watching over us.

2 comments:

Rebekah WilsonApril 19, 2011 at 1:40 PM
Those three days will always be that clear in your mind. Nothing will ever be as vivid as those days. Nothing will replace Caleb and nothing will cloud his memory.
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GinaApril 19, 2011 at 1:44 PM
Lauren, I'm so sorry. His pictures are absolutely adorable! I've found that it's when I'm most tired that I miss mine the most - and that is when most moms wish they could just sleep and not take care of a baby. *Sigh* I'm glad you are going to the remembrance ceremony. I think many people, including Hospital staff, will be able to see and learn from the love you have shown for your little guy. It occurred to me that hospitals probably don't see many moms go through losing an infant since so many moms would not even carry to term. You've done a brave, loving thing for Caleb. Keeping you in my thoughts and prayers always.
Gina
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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.