What is it like?

This blog entry may seem long… Stay with me, I promise it isn’t all “text” book!
The photo I have shared to the left was taken of Mason after his first surgery... Looking back I can now say that this was only the begining of our journey... Our future would hold the news of his strokes (plural), additional surgies and living "life" with a child who has a CHD.

What an appropriate day to share my perceptive... You asked; I am answering... what is it like?

The first question that is always asked “What’s a CHD?” and the next question, “What’s HLHS?”

For your reading pleasure here are the medical terminologies:
CHD: The abbreviation for Congenital Heart Defect.
This means that it is present at birth. Heart defects begin in the early stages of pregnancy when the baby’s heart is forming

HLHS: This is the condition Mason has.
The abbreviation for Hypoplastic Left Heart Syndrome…
This 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.

To understand HLHS, it is helpful to understand how a normal baby's heart works. The heart is comprised of four chambers: the upper chambers are called the left and right atria, and the lower chambers are called the left and right ventricles.

Very simply, in a healthy heart blood flows from the right atrium to the right ventricle where it is then pumped through the pulmonary artery to the lungs to be oxygenated. Blood then flows back to the heart via the left atrium to the left ventricle, which pumps this oxygenated blood through the aorta out to the body. This is how the body's organs and tissue receive oxygen, which is vital. When a baby has HLHS, the left side of the heart is underdeveloped so it cannot sufficiently pump the oxygenated blood out to the body.

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.

The PDA usually closes a few days after birth, separating the left and right sides of the heart. It is at this time that babies with undetected HLHS will exhibit problems as they experience a lack of blood flow to the body. They may look blue, have trouble eating, and breathe rapidly. If left untreated, this heart defect is fatal - usually within the first few days of life.

Once HLHS has been diagnosed, a drug called prostaglandin is given to keep the PDA open until surgery is performed. There are two surgical options for treating HLHS: a Heart Transplant or the 3-Stage Surgical Procedure.

Mason has currently had 2 of the 3-Stage Surgical Procedure.

But if you really want the truth, I will give you a mother’s perspective:

What is it like to have a child with a CHD?
• It’s asking… Lord what is your will?...
• It is a test of faith…
• It’s working through the stages of grief…
o Shock and Denial…
o Pain and Guilt…
o Anger and Bargaining…
o Depression…
o The upward turn…
o Working Through…
o Acceptance and Hope…
• It’s living with the stages of grief; they come and go…
• It’s Lasix, aspirin, Captopril, Enanapril…
• It’s worrying about blood cots (who would think)…
• It’s monitors, oxygen tanks and BEEPS…
• It’s a daily reminder to give THANKS…
• It’s feeding tubes and calories…
• It’s it the battle of eating and a bigger battle of keeping food down…
• It’s praising God for small miracles that many take for granted (weight gain)…
• It is holding your child for the first time (after waiting so long)
• It’s holding the responsibility of helping him grow strong…
• It’s becoming an expert on a condition you never knew existed…
• It’s making a hospital your home…
• It’s checking his sats and asking does he look blue…
• It’s sleepless nights…
• It’s tears shed for friends who have become family; With children who have lost the fight…
• It’s weekly therapy sessions…
• It’s cringing inside thinking about what he has been through and what lies ahead…
• It’s going into hibernation during the winter…
• It’s surgery day… and you will NEVER be ready…
o It’s handing him over…
o It’s knowing that the next 8 hours will be the longest in our life…
o It’s knowing that his heart must be repaired…
o It’s… praying… it’s hoping… that he will be okay…
o It’s waiting for those 3 pages during his surgery (page 1 – He has been put under anesthesia, page 2 – He is on the heart and lung machine –his heart is currently stopped, page 3 – He has been taken off the heart and lung machine)…
o It’s being told things went well; and crying as the sense of relief floods over your body…
o It’s knowing we aren’t out of the woods…
• It’s watching him sleep… Chest rising and falling…
• It’s knowing that this journey and this life has made me much wiser beyond my years… (It has also physically aged me )
• It’s seeing our reward in every smile…
• It’s that long faded scar down my child’s chest…
• It’s touching it gently and knowing that we are blessed…
• It’s the moment I realized I’ve stopped asking why?...

♥ Kelsey

We plan the way we want to live,
but only God makes us able to live it.
Proverbs 16:9 (The Message)