It's Thanksgiving today. You went to Heaven 2 months ago. Its been 57 days since I held you in my arms for the first and final time. Your Daddy and I made a turkey- our first time. Your bigsister Kailey watched the parade and loved it.We should be a family of 4. This thought has been in my mind all day.
I feel empty. Broken. Sad. Cold. Yet, I am still thankful. Thankful for you. Thankful for the 39 weeks that I carried you. For all the pictures we have. All your movements, kicks, and hiccups during pregnancy. Thankful for getting to meet you. For being shown such strength and love. You taught me so many things, but above all, you changed my world forever. I no longer fear death, because I know that you will be there to greet me with that oh so perfect face.
I hear it all the time. "Ugh, I'm so sick... my ankles are swollen... I'm so huge... just want this kid out..." The minor complaints of pregnant women everywhere. What they don't realize is how LUCKY they are. They are having a healthy baby. I can't stand to hear any of it. I was so sick with Caleb in the beginning, that until I was put on medication, I couldn't get up off the bathroom floor. And you know what? I would do that EVERY day for 9 months if it meant that he was here with us, alive and well.
It never really ends though. People complain forever. Maybe the child threw a tantrum in the store, was up early or late, or doesn't listen. I think to myself, you are seriously mad because YOU didn't get to sleep IN? There are families everywhere, who spend many sleepless nights in a row, watching over their baby/child in the hospital, praying that they will be ok. Families that, without warning, are told that their child didn't make it. Their lives are shattered, and as the world still goes on around them, they are left to pick up the pieces. So many don't realize how lucky and blessed they really are. To have their children with them, to be able to watch them learn and grow. The next time you are about to comment on how rough your life is, take a moment to really appreciate all that you have. Speak to them kinder, hold them tighter, and kiss them more often, spend more time. For there are so many that would give ANYTHING to do just that.
As you all know, we are in the middle of Genetic Testing. We learned a month ago that a small piece of Caleb's Chromosome 15 was duplicated. So Kyle and I got bloodwork done, to see if either of us has the same thing. I got a call today, and was told that I carry the same duplication. I either got this duplication from one of my parents, or it is something new with me. They need me to come in again to have more bloodwork done. This way they can do a kareotype, and look more closely at my chromosomes. We will find out whether the Ch. 15 duplication is the only thing going on, or if anything else is also switched around, or in the wrong location.
Is this duplication linked to Caleb's heart defects? Not sure. Will they do an Echo on my heart? They might. Will we test Kailey to see if she also has the duplication? I will for sure, no doubt about that. I have read that in some cases, the extra chromosome is very small, and has no effect on a person's health. No concrete answers yet, but we are working our way slowly, to what we hope, is a reason for all the heartbreak we have been through.
My keepsake necklace for Caleb is perfect. It means so much that his handprint is always with me. His birthstone is above the heart. His name and birthday are engraved on the back. I couldn't get a good picture of that. :)
Today marks the day that Caleb would be 2 months old. Today is the afternoon that I picked up my keepsake necklace, with his actual handprint on it. Today has been full of sighs, tears, and hugs. I miss him. It consumes me whole. Caleb is always on my mind. We received a letter from Cincinnati Children's today, expressing their deepest sympathy. It said that the last thing we need to worry about is medical bills and insurance issues, and that they will do what they can to get it taken care of, and will contact us if needed. We are still waiting to hear that his Medical Records are ready, and for the autoposy results. Mommy loves you sweet boy.
Caleb's birth announcements arrived today!!! I am so happy with them, they turned out great! It's bittersweet to look at them. He was so beautiful, and I'm so proud of him and the strength that he had. Yet sad and missing him more than anything in the world. I miss those cheeks and cute little snorts. I truly believe that he is watching over us now, and knows how much we love him.
Yesterday, Kailey kept asking to be a big sister... it broke my heart. She was taking a bath, and out of nowhere, started to say, "Big sister, please, please, please?" This morning, she went into Caleb's room and grabbed one of his diapers. She asked me if I was going to put it on him. WHAT do you say to that? :( I took a deep breath and sat down beside her. "I would love to, honey, but little brother is up in Heaven now." She just kind of looked at me, and then said, " Hospital Heaven?" I fought back tears, and just gave her a big hug. Explaining again, the best way I knew how, for why he is gone.
We love you baby boy. You're always on my mind. Love, Mommy.
Caleb's Comfort Project: Comforting those that have lost their child to HLHS
Click here to donate to Caleb's Comfort Project
Lilypie Angel and Memorial tickers
*"Things come close to us and we can almost hold onto them, but then they disappear. Things seem as if they are just about to make sense, then suddenly there is immense confusion and what was about to make sense seems quite remote, a million miles away."*
A life so brief, a child so small. You had the power to touch us all.
I am the face of missed miscarriages and infant loss
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.
I am a happily married Air Force wife and mother of 3 year old daughter Kailey. We recently had our baby boy Caleb on September 27th, 2010. 3 precious days is all that we were given with him. He had multiple severe and complex congenital heart defects. We miss him so much, and will love him always.