(I have no idea why my post has my words highlighted with a white background)
I feel really bad that I am now getting to post this post, but as you all know the parents were all flying in the same day as Morgan had both her 1-year-checkup and her EKG/ECHO appointment. As soon as those were done and the parents arrived, it hasn't slowed down at all until today.
I want to first say a HUGE Thank You, to all that were praying for Butterfly this day and have continued to. I have received your emails checking in and asking about her. I wanted to really take the time to explain to everyone all that I learned this day, because like so many out there probably, I didn't fully understand what it is that my little Butterfly had. My understanding was a 'Heart Murmur' and that is all I have talked about. I read up on murmurs so that I could better understand, while listening to the doctors explain to you things. But it goes to show that when you are pretty much delirious after only given birth two-weeks (at the time) while listening to your pediatrician and pediatric cardiologist specialist tell you that your newborn girl as a heart murmur, and will not really know the extent of it until her next appointment in 12 months (her first birthday), but in the meantime will monitor it throughout her checkups. You only hear "heart murmur" and then everything else is a blur or can't even be recalled from that conversation.
Twelve-months later, when I am able to clearly think and hear what it is exactly that Morgan really had, sort of caught me by surprise. Now looking back on things, it was probably best that I didn't fully understand everything, or I probably would have been more of a mess than I was at that time.
While sitting at the Cardiologist office, I asked several questions, and he even took the time to show me on the charts and posters and answer all my questions. Although my prayers had been answered today... (Ill get to that in a minute). I still wanted to know what I didn't fully understand twelve-months ago when my little girls diagnosis was still in the 'unknown' stage. I thought I would take the time and research and provide you with more detailed information and understanding the difference in a 'HEART MURMUR' and a 'HEART DEFECT'.
Many parents fear the worst when their child is diagnosed with a heart murmur, but this diagnosis is actually extremely common. In fact, many kids are found to have a heart murmur at some point during their lives. Most murmurs are not a cause for concern and donot affect the child's health at all.
What exactly is a heart murmur? By itself, the term heart murmurisn't a diagnosis of an illness or disorder. To better understand what itdoes mean, it's important to know how the heart works.
How the Heart Works
The normal heart has four chambers and four valves (which function like one-way doors). The two lower pumping chambers of the heart are called the ventricles, and the two upper filling chambers are theatria (singular is atrium).
Here's how blood moves in normal circulation: Blood that returns from the body to the filling chamber on the right side (the right atrium) is low in oxygen. This blood passes across a valve (thetricuspid valve) to the pumping chamber on the right side (theright ventricle) and then travels across the pulmonary valve to the lungs to receive oxygen. The oxygen-enriched blood returns to the filling chamber on the left side (the left atrium), then across a valve (the mitral valve) to the pumping chamber on the left side (the left ventricle). The blood is then pumped across the aortic valve out to the body through the aorta, a large blood vessel that carries blood to the smaller blood vessels in the body to deliver oxygen.
Using a stethoscope, a doctor examines the heart by listening to the sounds it makes. The familiar "lub-dub" sound of a normal heartbeat is caused by the closing sound of the valves as the heart squeezes to push blood through the body. A heart murmur describes an extra sound in addition to the "lub-dub." Sometimes these extra sounds are simply the sound of normal blood flow moving through a normal heart. Other times, a murmur may be a sign of a heart problem.
How Are Heart Murmurs Diagnosed?
A murmur is heard during the heart listening exam, using a stethoscope held at different areas on the front of the chest as the heart beats. Heart murmurs can be heard in infants as well as older children and teens. Of course, if the child is crying, uncooperative to the examiner, or breathing loudly, it may not be possible to hear a murmur. It helps if the child is quiet when the doctor listens, since some heart murmurs are very soft. The doctor may have a parent help by calming the child or having the child sit in the parent's lap during the exam.
Heart murmurs are rated on a scale from 1 to 6 in intensity (loudness). Grade 1 is barely audible, whereas grade 6 is very loud. Your child's doctor will note where on the chest the murmur is best heard, the characteristics of the murmur (for example, whether it's harsh and high-frequency or soft and blowing), where it occurs in the heartbeat cycle, and whether it changes when your child changes position. After this initial discovery, the doctor may refer your child to a pediatric cardiologist for further evaluation.
It's not unusual for a murmur to be noticed during a check-up, even though no murmur was heard before. This is for several reasons. Innocent murmurs tend to come and go, depending on the child's heart rate, position during the exam, and the presence of fever. Some new murmurs may be a sign of a newly-developed heart problem. Finally, some heart problems present from birth (congenital heart problems) may not initially be severe enough to cause a murmur that can be detected during examination.
Because of the common misconception that all heart murmurs are serious, it's important for parents to understand which type of murmur their child has and if it needs further evaluation.
What's an Innocent Murmur?
The most common type of heart murmur is called functional orinnocent. This diagnosis means the murmur is produced by a normal, healthy heart. It can come and go throughout childhood. It usually goes away on its own as the child gets older and doesn't pose any health threat.
Kids with innocent heart murmurs don't require a special diet, restriction of activities, or any other special treatment. They do not need to take a dose of antibiotic before going to the dentist. Those old enough to understand that they have a heart murmur should be reassured that they aren't any different from other kids. In other words, an innocent murmur is the sound of normal blood moving through a normal heart in a normal way. A simple analogy is that just as we can sometimes hear the sound of air moving in an air duct, or water flowing through a plumbing pipe, we can often hear the sound of blood moving through the heart even if there is not a heart problem.
What About Congenital Heart Defects?
Some murmurs may indicate a problem with the heart. If the doctor suspects something other than an innocent heart murmur, your child will see a pediatric cardiologist, who may order or perform additional tests such as a chest X-ray, an EKG (an electrocardiogram), or an echocardiogram. An echocardiogram, or "echo," is an ultrasound picture of the heart structures (chambers, walls, and valves). It records the motion of the blood through the heart and can measure the direction and speed of blood flow within the heart structures.
About 1 out of every 100 babies is born with a structural heart problem, or congenital heart defect. These babies may show signs of their defect as early as the first few days of life, or they may appear completely healthy until later in childhood. Some kids won't show any symptoms beyond a heart murmur, while others will have symptoms that could be mistaken for other illnesses or disorders.
Symptoms of a significant heart defect in newborns and infants can include:
Contact your doctor if you notice any of these symptoms.
Congenital heart defects can be seen in chromosomal disorders such as trisomy 21 (Down syndrome), or associated with specific gene abnormalities. Babies with other birth defects may also have heart defects. Exposure to certain chemicals, including alcohol, or medications before birth can be associated with congenital heart disease. While some parents may have more than one child with a heart defect, most heart defects aren't considered to be hereditary. In most cases, however, children with congenital heart defects have no known risk factors.
Maternal health also plays a role. At a higher risk of having a baby with a heart defect are pregnant women who:
have PKU (phenylketonuria, a genetic error of the body's metabolism)
Common Heart Defects
Several different categories of heart problems can present with heart murmurs. These include septal defects, valve abnormalities, abnormalities of flow between the heart chambers and the exits (outflow tract obstruction), and heart muscle disorders.
Septal defects involve the walls (or septum) between the upper or lower chambers of the heart. A hole in the septum can result in blood flowing through it into the heart's other chambers. This extra blood flow may cause a murmur. It can also make the heart work too hard and may cause the heart to enlarge. Some holes may be large enough to produce symptoms in addition to a heart murmur; others are smaller and may close on their own in time.
Valve abnormalities are caused by heart valves that are narrow, too small, too thick, or otherwise abnormal. Valves that are misshapen don't allow smooth blood flow across them, and this creates turbulent flow. Sometimes, abnormal valves may allow backflow of blood within the heart. Either condition will cause a murmur. Outflow tract obstruction may be caused by extra tissue or heart muscle that blocks the smooth flow of blood through the heart.
Heart muscle disorders(cardiomyopathy) can make the heart muscle abnormally thick or weak. This can impair the heart's ability to pump blood to the body normally.
A heart murmur is an exam finding, not a disease. Your doctor and pediatric cardiologist can determine if the murmur is innocent (which means your child is perfectly healthy) or if there is a specific heart problem. If there is a problem, a pediatric cardiologist will know how to best take care of it.
So Morgan had a little of BOTH (A heart murmur) and (A heart defect). She had the first type, in which the "wall" (or spetrum) between the two parts of the heart had an opening in it, causing blood to flow through it. When a child's heart is being formed in the womb, there are these flaps that that flap (almost in a hand clapping mode), because they over lap each tap they touch (or clap). Those flaps are to clap and then eventually "stick" together, making a wall, and so to stop the blood from getting through. Morgan's were not sticking together, and blood was still getting through. This was her "HEART DEFECT".
Her spectrum in her heart (the flap or wall) not closing off or sticking together, allowing blood to flow through, also made extra sounds in her heart. This would be her "HEART MURMUR". In which was being caused by her heart defect.
Wow? I know, me too.... I didn't know this.
A heart murmur is a SOUND in a heart, some not good, some different but still innocent and healthy. The question is what 'causes' the murmur in the first place.
Dr. Skimmings example: Take a rubber band. If you take the rubber-band and swing it around on your finger you may not hear anything at all, BUT it is still a perfectly healthy/normal rubber-band. Take that same rubber-band and now stretch it out with your finger and thumb and thump the rubber-band like a guitar string, you will hear SOUND (doing! doing!). However, it is still a perfectly, healthy/normal rubber-band, but something was taking place that caused it to make an extra sound. This could be an innocent murmur of a heart.
I hope this helps you better understand, what I now better understand.
And now for the good GREAT, WONDERFUL, MUCH APPRECIATED, AWESOME, ANSWERED PRAYER...... Morgan has been DISCHARGED!!!
Meaning, her 'heart defect' closed on it's own, in which was causing her 'heart murmur' (sound) and she now neither has a 'DEFECT' or 'MURMUR'. Being discharged as the perfect little girl she is with a perfect little healthy heart.
But wait.... God's plans do not stop there. That is why I love HIM so much.
While sitting there talking with Dr. Skimming, and looking over pictures of different heart defects and pretending in my mind I was the doctor I should have been (HA!). We begin to talk about Stellan. I shared with Dr. S. Stellan's story and how Stellan had just been flown right now as I sit with him, to Boston for his surgery. He shared with me info about Stellan and patients he has had similar experience with. It was so interesting. Then, that conversation lead to another one called Camp Boggy Creek (www.boggycreek.org), one of his favorite charity organizations he volunteers at, and was attending this past Friday. He volunteers as a doctor there. This time he took his 9 year old daughter to experience in it all with him. Pretty cool!
I told him about my interest in stuff like that, and that I am into photography and wanting to get my foot in the door using my photography in some way for things like that.
Well, over the weekend I received an email from Dr. S. and he is going to help me get my 'foot in the door' with this charity, allowing me to take pictures for them. Yea!!!
And while I am at it here...... let me just give you a quick note on the weekend with all the parents in town and Morgan's first birthday party.
The weekend with the parents was a lot of fun. Everyone really enjoyed themselves and had a great time. Mark and I got to pretend like we were camping while sleeping on an air matress in the formal dinning room for a few nights. My parents shared Hunters room because he has a full bed and a top bunk in his room. While Marks parents used our bedroom.
Morgan's party was a big hit. We had a bounce house, a really, really nice clown, snow cone machine, BBQ, cake, ice cream and drinks. EVERYONE on my invite list was able to make it. Since when in the world does that happen where EVERYONE on on your list is able to attend? Almost never!
Although a bit windy that day, making the temps in the 70's, it was so much better than being HOT. Not only did the kids have fun, but the adults had fun. We played wiffle ball, jumped in bounce house and also got our faces painted. Okay so I was the ONLY adult with my face painted, but they did jump in bounce house and play wiffle ball. I brought out the famous playpen gate for the younger kids to play in. They had a beach ball to bounce and toss around. While all the boys Hunters age, made their own little party area at another pravilion playing and trading Bakugans.
Morgan was great. She was being passed around from one to another, and taking in all the activities around her. When presenting her the splash cake, she approached it only like a gentle butterfly would. One little touch here and there, then a taste, a WOW, another taste, WOW-WOW, another taste, to face in the cake and half the cake totally eaten by Butterfly. That's my girl HER DADDY'S girl. My next prayer... that she doesn't eat like her daddy. LOL!
For once, allowing me to really be IN the party scene and letting me have fun celebrating my daughters first birthday. Michelle @ Circle of Life, offered to take pictures for me this day. There were so many great ones, and I am so thankful that she did this for me. I was able to capture the moment by being in the moment, and not running around behind the camera as I always am. She put together this collage for me and I thought it was the perfect collage to post here of a special day for Morgan Paige. Thank you Michelle for being a good friend to us.
Happy ONE YEAR Butterfly!!!
We love you!!!
*I am still so happy about Morgan being discharged, that I find myself thinking about when cleaning or driving, lost in thought. I start praising God, and smiling every time I think of that day --- DISCHARGED!!!
PS: Did you notice what a busy day TEDDY also had? Thank goodness I brought Mr. Teddy along. He saved us many tears and kept a baby girl happy and calm.