Caleb's Heart Story: Empty Arms

Saturday, January 8, 2011

Empty Arms

Today I went up to Caleb's room, and spent some time in there. Looked through, touched, and held things of his that I haven't in awhile.

Caleb's soothie buddy :) It still has the sugar water on it from when he was in the CICU. The hat he wore once he was born. In the ziploc bag, is the blanket they swaddled him in after he passed away. I'm holding onto his sweet smell as long as I can.

Perfect little feet :)

The drawing of Caleb's heart from the doctor right before his surgery. Still hard to believe that his poor heart was broken, when he looked so perfect.

Miss you my little chunk :)

4 comments:

DanielleJanuary 8, 2011 at 10:36 PM
Lauren, my goodness...I don't have words right now. This post took my breath away because I did the same thing today, I opened Aaron's ziplock bag of clothes he wore before he was cremated...to smell him again. And, held his hospital bracelet, looked through his things...sat down in the nursery and took it all in. I understand it all too well. It brought tears to my eyes to read your post. It's nice to know we're not alone in this when it can feel like such a lonely, isolated place to be. Thinking of you and sweet Caleb tonight. Love and prayers to you...
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Ashlee TomesJanuary 9, 2011 at 6:28 AM
Lauren,
I appreciate your comment on my blog, and I am truly so very sorry that you are going through this nightmare. Caleb was so beautiful. Those chubby cheeks...how I'd love to just kiss on them!! As hard as this journey is, just know (whether you believe it now or not) that you will survive this. It will not be easy, and your heart will always hurt, but with time, it becomes more manageable. As a fellow heart mommy, please know that I am here for you. If you ever want to contact me, please do! Also, just in case you haven't read the beginning of my blog, I posted a ton of journal entries that I kept from the very beginning of my loss. I hope that my brutally honest feelings will help you to feel "normal" on those days when you feel like you're going crazy. May God give you peace and comfort and hope for your future! I used to meditate on this verse when I felt that my future was doom and gloom..."For I know the plans I have for you, says the Lord. They are plans for good and not for evil; to give you a future and a hope." (Jeremiah 29:11). Take care and thank you for contacting me through my blog.

Love,
Ashlee Tomes
ashleetomes@yahoo.com
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carlen :)January 9, 2011 at 1:37 PM
Reading these post are so touching, I'm sorry for what you have had to go through, Caleb was and still is such a handsome baby boy. I wish I could take this pain away for you, but I hope you find peace in knowing God had greater things planned for Caleb up in heaven. :) I'm here for you, always praying for you.

<3 carlen
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The B FamilyJanuary 11, 2011 at 12:52 PM
There aren't words, are there? Just emptiness and a void that will never be completely filled...at least not this side of Heaven. My heart breaks with you...and I am here for you. I saw that you found Ashlee's blog too. She is a precious friend and encourager as we walk this journey together towards Eternity...learning slowly how to find a new normal and live again.
I just read "Heaven is for Real" by Tim Burpo...the best read, by far, that I've read since Annabelle passed. It has really helped me recently as we approach her 3rd birthday at the end of the month. I think you'd enjoy it...and it will renew Heaven even more...and spur us on towards it...rejoicing at what our babies are seeing right now!
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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.