Why I don't like it when Grace sleeps late

Ok, I know that it is most parents dream to have their kids sleep late. Grace just woke up, and let me tell you, every time she sleeps past 8 I fight the urge to go and wake her up. I live with the fear that some day she won't wake up - irrational or not.

We go to Children's Hospital of Milwaukee on Tuesday for her yearly checkup and I am scared. Besides her initial open heart surgery at 4 days old, her health has been good. But, I also know that she will need surgery again, at least once, at some point in her life - it could be this time. Here is some info on what she has:

ASD
The septum is a wall that separates the heart's left and right sides. Septal defects are sometimes called a "hole" in the heart. A defect between the heart's two upper chambers (the atria) is called an atrial septal defect (ASD).



She had this at birth, and although it is still there, it is not something that they are overly concerned with at this point.







VSD




The septum is a wall that separates the heart's left and right sides. Septal defects are sometimes called a "hole" in the heart. A defect between the heart's two lower chambers (the ventricles) is called a ventricular septal defect (VSD).


When there is a large opening between the ventricles, a large amount of oxygen-rich (red) blood from the heart's left side is forced through the defect into the right side. Then it's pumped back to the lungs, even though it's already been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen. This means the heart, which must pump more blood, may enlarge from the added work. High blood pressure may occur in the lungs' blood vessels because more blood is there. Over time, this increased pulmonary hypertension may permanently damage the blood vessel walls.


If the opening between the ventricles is small, it doesn't strain the heart. In that case, the only abnormal finding is a loud murmur.



She was born with this as well. It is large enough that it is still a concern, but they don't feel the need to go in and patch it yet.

PFO





Normally the foramen ovale closes at birth when increased blood pressure on the left side of the heart forces the opening to close.


If the atrial septum does not close properly, it is called a patent foramen ovale. This type of defect generally works like a flap valve, only opening during certain conditions when there is more pressure inside the chest. This increased pressure occurs when people strain while having a bowel movement, cough, or sneeze.



If the pressure is great enough, blood may travel from the right atrium to the left atrium. If there is a clot or particles in the blood traveling in the right side of the heart, it can cross the PFO, enter the left atrium, and travel out of the heart and to the brain (causing a stroke) or into a coronary artery (causing a heart attack).



This is also something she was born with, and that they are watching closely.


COARC





The aorta is the body's main artery. It distributes oxygen-rich blood to all parts of the body except the lungs. The first branches of the aorta go to the upper body (arms and head). After that, blood goes to the lower body (abdomen and legs). Coarctation of the aorta is a narrowing of the aorta between the upper-body artery branches and the branches to the lower body. This blockage can increase blood pressure in your arms and head, reduce pressure in your legs and seriously strain your heart. Aortic valve abnormalities often accompany coarctation.


This is what was repaired at birth. It was initally missed by the Pediatrician on call, and when her regular Pediatrician came back from vacation and visited us in the hospital he noticed it right away. It was severe enough that I was immediately discharged (I had a c-section, good thing or we wouldn't have seen the regular Pediatrician until her first check up) and sent to Milwaukee.


This is still a concern as there is a good chance scar tissue can form and it will have to be re-opened. I believe they could go up and do an angioplasty this time as opposed to opening her up. Not positive though.


A bicuspid aortic valve is a heart condition that is due to a congenital deformity. A normal aortic valve has three cusps to manage the flow of blood through the heart. A bicuspid valve, however, only has only two cusps. As you can see in the diagram below, the bicuspid aortic valve has conjoined cusps. This can limit the flow of blood across the aortic heart valve.

The impact of a bicuspid aortic valve significantly varies from patient to patient. There can be severe aortic stenosis at birth. Or, aortic stenosis can also develop during childhood or during adulthood. Typically bicuspid aortic valve symptoms peak around the fourth decade of life. Aortic valve leakage (called aortic regurgitation or aortic insufficiency) is less common during early childhood but can also develop over time.
This is the defect that is of greatest concern, and the one that they are watching the most closely.
FACTS ABOUT CONGENITAL HEART DEFECTS:

Congenital Heart Defects or CHD’s is the #1 birth defect and the #1 cause of infant death related to birth defects. 1 out of every 100-150 babies born will have a CHD. (1 out of every 800-1000 babies born has Downs Syndrome).

1 in 10 of those born with CHD will have a fatal defect.

It is estimated that 1,000,000 Americans have a CHD. It is estimated that 35,000-40,000 babies born each year with a CHD.

In the US there are nearly twice as many deaths due to CHD than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHD.

The cost of inpatient surgery alone for CHD’s exceeds 2.2 billion dollars per year.

There are approximately 35 know Congenital Heart Defects.

Causes for CHD are still being studied. While there is no known definitive cause it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

There is no known cure for CHD. However the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was.
With advances in medicine, many of those born with CHD will have their first and sometimes only corrective surgery before age 2.
Many of those living with CHD go on to lead normal to near normal lives. Those with complex CHD’s will also go on to lead longer and active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

 

9 comments:

Dorothy Thompson said...

Oh Tracee...I didn't know. Bless your heart. My son was born with Marfans, which is a tissue deteriorating disease and a slight heart murmur. I know what you're going through. Our children are our life. (((((HUGS))))))

November 7, 2008 at 8:25 AM
Tracee said...

They sure are - thanks as always for all your support Dorothy - you are such a dear friend and have made such an impact on my life!

November 7, 2008 at 9:06 AM
Karen Magill said...

Years ago when I woke paralyzed on one side of my body I was afraid to go to sleep. I was afraid I would never wake up. Your post tells me what my parents must have felt. Thank you for that and my thoughts are with you and your daughter.

November 7, 2008 at 11:22 AM
Morgan Mandel said...

We all have some kind of scary physical thing either about ourselves or those we love. You don't want to think about them, but sometimes you can't help it, especially when it comes to a small child.
Hope all goes well, Tracee.
Morgan Mandel
http://morganmandel.blogspot.com

November 7, 2008 at 6:00 PM
Rebecca Camarena said...

There's nothing worse than a sick child. Mine has asthma and there's nothing scarier when she stands by your bed in the dark and you wake you up because you can hear the wheezing that keeping her from breathing normally. But that's nothing compared to what you're going through.

November 7, 2008 at 6:16 PM
JM said...

*hugs* It must be hard. I can't imagine, as I don't yet have children of my own. I hope everything goes well on Tuesday.

November 7, 2008 at 9:16 PM
Mayra Calvani said...

Dear Tracee,

I wish your little girl the best. This must be so hard for you. I don't know what I'd do in your situation.

November 7, 2008 at 11:24 PM
Tracee said...

Thanks everyone, your support means the world to me!

November 8, 2008 at 6:59 AM
Jeni said...

My oldest child had to have abdominal surgery when she was 6 weeks old for pyloric stenosis. It's a frequently occurring condition in first-born males but rare in females unless it is hereditary. So when my grandkids came along, I worried that they too might have this problem but thankfully, all of them have been ok in that respect. My two youngest grandkids though are both autistic -something so many folks look at as being such a terrible disorder, etc., but not the same way as I regard them as they are absolutely the light of my life.
But with all three of my own kids, now with the grandchildren too -and especially when they were very small -I worried constantly that something would happen and they just wouldn't wake up. Actually, I guess I still do that to some extent.
Hope things work out that your daughter doesn't need the surgery too soon for her heart problems. Thankfully though, much more can be done today than ever before.

November 8, 2008 at 11:52 PM

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