Last night we attended the city meeting at Belle Plaine Minnesota, we recieved a signed proclamation making FEB 7th-14th CHD Awareness week.

We were asked if we would introduce ourselves & Cameron and then to briefly describe what it's like to be a CHD family.

Being A family with a son who was born with a severe congenital heart defect is scary, it's nerve wracking not knowing what tomorrow is gonna bring, it's always busy with Cardiologist appointments, physical therapy pediatrician appointments, Home nurse visits once a month to give Cameron his RSV shot, it's living in a "bubble" because you are always worrying about exposing him to germs and illness that could land him in the hospital. It's getting up in the middle of the night to make sure he's still breathing, it's daily meds to keep his blood pressure at a normal limit, it's daily baby asprin to keep his blood from clotting, It's struggles to get him to eat good enough that he gains a good amount of weight.

Every day has it's challanges but everyday Cameron accomplishes something wonderful.

&

Everyday We count our blessings that Cameron is a part of our lives.

&

that is what it's like to have a son with a congenital heart defect.

We were also asked to talk about The CHD Facts and we did, we watched the council memebrs mouths drop open and we watched their silent reaction as we told them that there is no cure for CHDs,

WE also touched on how many CHDers we knew through facebook & through the U of M Amplatz, we also told the council members about all the CHD Angels that lost their battle with their congenital heart defects.

All in All it was a nice evening at the city meeting & it felt good to help raise CHD Awareness!

(We have another proclamation signing Wednesday evenening in Henderson MN)



DO YOU KNOW YOUR CHD FACTS?

Today Is one of those days, where I find myself not doing much of anything. I am constantly watching Cameron. Tonight we go to the City of Belle Plaines monthly meeting,
 And Tonight the Belle Plaine mayor will be signing a proclamation making this week CHD Awareness week.
I'm pretty sure I will have a tear or two in my eyes as he gives me a copy of the proclamation. My family doesn't understand the importance of a proclamation making Feb 7th-14th CHD Awareness Week. My husband & I try to explain it to them, but honestly if you aren't living a CHD life then you probably won't understand.

To Me CHD Awareness week means just that spreading awareness about the importance of Congenital Heart Defects. If we spread enough awareness just maybe someday there will be enough funds to help with CONgenital Heart Defect Research. Someday we could have some answers as to what causes CHDs or breakthrough technology.
Every year it seems like they come up with some new technique to help our kids and their special hearts. Someday they will be able to grow a heart from stem cells (that's what one of the Cardiologist told us at one of Cameron's appointments) And then maybe a baby or child will be able to have a heart transplant without waiting so long for one and then they will get a transplant before it's to late.
But without CHD Awareness none of this will be possible.

Another reason CHD AWARENESS is important is because, before I had Cameron i never thought about the possibilty of having a baby with a heart defect. I didn't think it would happen to us,but it did.
Cameron is now 1 in 100! And now we are on a new journey in life, we are now a heart family!
 If we didn't know anything about heart defects in newborns, then I am pretty positive that other first time or even other parents who already have healthy kids don't know about congenital heart defects.

So many times I have had people comeup to me and ask if We are hoping for a boy or girl, I would always reply.. "it doesn't matter to us as long as it has 10 fingers & 10 toes" never once did I think or say it doesn't matter as long as the baby has a whole functioning heart, and i'm pretty sure that other people have said the same thing about as long as it has 10 fingers/10 toes.
 So YES we need to get CHD awareness out their to expecting parents! As soon as I hear about one of my friends or family members expecting, I nicely tell them about Congenital Heart Defects and some of the facts.
 Sometimes the expecting parents are happy to listen other times they think I'm trying to scare them, I'm never trying to scare them..I just want them to have their eyes open...don't worry about the little things and have your mind open to the fact that  Anyone can give birth to a baby with a heart defect.
Doesn't matter if your white, black, Purple with dots... IT CAN HAPPEN TO ANYONE!!!

Here are some CONGENITAL HEART DEFECT FACTS:

♥ Congenital Heart Defects are the #1 birth defect (Source: March of Dimes)
♥ Congenital Heart Defects are the #1 cause of birth defect related deaths (Source: March of Dimes)
♥ About 1 out of every 100 babies are born each year with some type of CHD (approx 40,000/year) (Source: Children's heart Foundation)
♥ Nearly twice as many chilren die from Congenital Heart Defects in the USA each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is 5 times higher then funding for CHD. (Source: Children's Heart Foundation)
♥ This year approx 4,000 babies will not live to see their first birthday because of Congenital Heart Defects (source: Children's Heart Foundation)
♥ The cost of  inpatient surgery to repair CHDs exceeds over $2.2 billion a year (Source: Children's Heart Foundation)
♥ Of every dollar the government spends on medical funding ONLY a fraction of a penny is directed towards  Congenital Heart Defect research (Source: Children's Heart Foundation)
♥Though research is ongoing, at least 35 Heart defects have now been identified.
♥ 4-8% born with CHD have Hypoplastic Left Heart Syndrome
♥ 4-10% born withCHD Have Atrioventriclar Septal Defects
♥ 8-11% born with CHD have Coarctation of the Aorta
♥ 9-14% born with CHD have Tetralogy of Fallot
♥10-11% born with CHD have Transposition of the great Arteries
♥14-16% born with CHD have Ventricu;ar Septal Defects
♥ Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosos is not made until days, weeks, monthd or even years after. In some cases, CHD is not detected until adolescence or adulthood. (Source: March of Dimes)
♥ It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications (Source: March of Dimes)

Cameron is the reason I feel the need to help raise awareness to such a ugly CHD...

♥ Cameron after his 1st OHS Hybrid ♥

♥ Cameron's shirt says it all, CHD WARRIOR ♥

 EVERYTHING I DO I DO FOR CAMERON, he is my inspiration during this.
                         ♥♥♥I LOVE YOU CAMERON CHASE! ♥♥♥

CHD AWARENESS MONTH

For the last couple weeks i have been thinking non stop about what I want to say at the proclamation signings that I was invited to from the city of Henderson & the City of Belle Plaine.
 Both Mayors contacted me and said they would be honored to sign the proclamatin making Feb 7th-14th 2011 Congenital Heart Defect Awareness Week. They both asked me to go in front of the city officials and the public that will be at the meetings and introduce my family & most importantly tell them why "heart day" is important to me and then to give some CHD/HLHS facts.
  I am beyond nervous, i have never been great with speaking to a room full of people, i have never been great with looking at people in the eye. What if I sound dumb, what if  they ask me a question and I don't have the best answer?
 My mom who knows how nervous I am, says "Shawna, you just gotta speak from your heart, don't be nervous, you're doing it for Cameron & all families affected by Congenital Heart Defects"
And as always my mom is right, I just gotta get over my fear of speaking in public and shout out the importance of CHD Awareness week!

Here are some CHD questions & answers (provided by March of Dimes)

Congenital heart defects

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).


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.


How does the heart work? The heart is a muscle that pumps blood to the body. It is divided into four hollow parts called chambers. Two chambers are located on the right side of the heart, and two are on the left. Within the heart are four valves (one-way openings) that let the blood go forward and keep it from going back. Blood goes from the heart to the lungs where it picks up oxygen. From the lungs, the blood carrying oxygen, which appears bright red, goes back to the heart. The heart then pumps the oxygen-rich blood through the body by way of arteries. As the oxygen is used up by the body's tissues and organs, the blood becomes dark and returns by way of veins to the heart, where the process starts over again.


How do heart defects affect a child? Some babies and children with heart defects experience no symptoms. The heart defect may be diagnosed if the health care provider hears an abnormal sound, called a murmur. Children with normal hearts also can have heart murmurs, called innocent or functional murmurs. A provider may suggest tests to rule out a heart defect.


Certain heart defects can cause congestive heart failure.
In this condition, the heart can’t pump adequate blood to the lungs or other parts of the body. It can lead to fluid build-up in the heart, lungs and other parts of the body. An affected child may experience a rapid heartbeat and breathing difficulties, especially during exercise. Infants may experience these difficulties during feeding, sometimes resulting in poor weight gain. Affected infants and children also may have swelling of the legs or abdomen or around the eyes.


Some heart defects result in a pale grayish or bluish coloring of the skin called cyanosis. This usually appears soon after birth or during infancy and should be evaluated immediately by a health care provider. On occasion, cyanosis may be delayed until later in childhood. Cyanosis is a sign of defects that prevent the blood from getting enough oxygen. Children with cyanosis may tire easily. Symptoms, such as shortness of breath and fainting, often worsen when the child exerts himself. Some youngsters may squat frequently to ease their shortness of breath.


What tests are used to diagnose heart defects? Babies and children who are suspected of having a heart defect are usually referred to a pediatric cardiologist (children’s heart disease specialist). This doctor can do a physical examination and often recommends one or more of the following tests:

• Chest X-ray
• Electrocardiogram, a test that records heart rate patterns
• Echocardiogram, a special form of ultrasound that uses sound waves to take pictures of the heart

All of these tests are painless and noninvasive (nothing enters the child’s body). Some children with heart disease also may need to undergo a procedure called cardiac catheterization. In this procedure, a thin, flexible tube is inserted into the heart after the child is given medications to make him sleepy. This test provides detailed information about the heart and how it is working.


What causes congenital heart defects?
In most cases, scientists do not know what makes a baby's heart develop abnormally. Genetic and environmental factors appear to play roles.


Scientists are making progress in understanding the genetics of heart defects. Since the 1990s, they have identified about 10 gene mutations (changes) that can cause isolated (not accompanied by other birth defects) heart defects (3). For example, a March of Dimes grantee identified a gene that can cause a heart defect called an atrial septal defect (a hole between the upper chambers of the heart), and one that may contribute to hypoplastic left heart syndrome (underdevelopment of the heart’s main pumping chamber) (4, 5).


Environmental factors can contribute to congenital heart defects. Women who contract rubella (German measles) during the first three months of pregnancy have a high risk of having a baby with a heart defect. Other viral infections, such as the flu, also may contribute, as may exposure to certain industrial chemicals (solvents) (2). Some studies suggest that drinking alcohol or using cocaine in pregnancy may increase the risk of heart defects (2).


Certain medications increase the risk. These include (2):

• The acne medication isotretinoin (Accutane and other brand names)
• Thalidomide (approved only for a rare, severe skin disorder, but sometimes used for other conditions)
• Certain anti-seizure medications

Some studies suggest that first-trimester use of trimethoprim-sulfonamide (a combination of antibiotics sometimes used to treat urinary-tract infections) may increase the risk of heart defects (2).


Certain chronic illnesses in the mother, such as diabetes, may contribute to heart defects (2). However, women with diabetes can reduce their risk by making sure their blood sugar levels are well controlled before becoming pregnant.


Heart defects can be part of a wider pattern of birth defects. For example, at least 30 percent of children with chromosomal abnormalities, such as Down syndrome (mental retardation and physical birth defects) and Turner syndrome (short stature and lack of sexual development), have heart defects (3). Children with Down syndrome, Turner syndrome and certain other chromosomal abnormalities should be routinely evaluated for heart defects.


Heart defects also are common in children with a variety of inherited disorders, including Noonan syndrome (short stature, learning disabilities), velocardiofacial syndrome (craniofacial defects and immune deficiencies), Holt-Oram syndrome (limb defects) and Alagille syndrome (liver, skeletal and eye defects) (3).


What are some of the most common heart defects, and how are they treated?

• Patent ductus arteriosus (PDA): Before birth, a large artery (ductus arteriosus) lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. If it doesn’t close, the baby may develop heart failure. This problem occurs most frequently in premature babies. Treatment with medicine during the early days of life often can close the ductus. If that doesn't work, surgery is needed.
• Septal defect: This is a hole in the wall (septum) that divides the right and left sides of the heart. A hole in the wall between the heart’s two upper chambers is called an atrial septal defect, while a hole between the lower chambers is called a ventricular septal defect. These defects can cause the blood to circulate improperly, so the heart has to work harder. Some atrial septal defects can be repaired without surgery by inserting a thin, flexible tube into the heart and then releasing a device that plugs the hole. A surgeon also can close an atrial or ventricular septal defect by sewing or patching the hole. Small holes may heal by themselves or not need repair at all.
• Coarctation of the aorta: Part of the aorta, the large artery that sends blood from the heart to the rest of the body, may be too narrow for the blood to flow evenly. A surgeon can cut away the narrow part and sew the open ends together, replace the constricted section with man-made material, or patch it with part of a blood vessel taken from elsewhere in the body. Sometimes, this narrowed area can be widened by inflating a balloon on the tip of a catheter (tube) inserted through an artery.
• Heart valve abnormalities: Some babies are born with heart valves that do not close normally or are narrowed or blocked, so blood can’t flow smoothly. Surgeons usually can repair the valves or replace them with man-made ones. Balloons on catheters also are frequently used to fix faulty valves.
• Tetralogy of Fallot: This combination of four heart defects keeps some blood from getting to the lungs. As a result, the blood that is pumped to the body may not have enough oxygen. Affected babies have episodes of cyanosis and may grow poorly. This defect is usually surgically repaired in the early months of life.
• Transposition of the great arteries: Transposition occurs when the positions of the two major arteries leaving the heart are reversed, so that each arises from the wrong pumping chamber. Affected newborns suffer from severe cyanosis due to a lack of oxygen in the blood. Recent surgical advances make it possible to correct this serious defect in the newborn period.
• Hypoplastic left heart syndrome: This combination of defects results in a left ventricle (the heart’s main pumping chamber) that is too small to support life. Without treatment, this defect is usually fatal in the first few weeks of life. However, over the last 25 years, survival rates have dramatically improved with new surgical procedures and, less frequently, heart transplants (6).

At what age do children have surgery to repair heart defects? Many children who require surgical repair of heart defects now undergo surgery in the first months of life. Until recently, it was often necessary to make temporary repairs and postpone corrective surgery until later in childhood. Now, early corrective surgery often prevents development of additional complications and allows the child to live a normal life.


Following surgery, children should have periodic heart checkups with a cardiologist. Children and adults with certain heart defects, even after surgical repair, remain at increased risk of infection involving the heart and its valves. Parents of children with heart defects and adults with repaired heart defects should discuss with their provider whether they need to take antibiotics before dental visits and other procedures to prevent these infections. Antibiotic treatment is recommended only for those considered at highest risk for infection, including those with man-made heart valves (7).


Is there a prenatal test for congenital heart defects? Echocardiography can be used before birth to accurately identify many heart defects. If this test shows that a fetus’s heart is beating too fast or too slowly (called an arrhythmia), the mother can be treated with medications that may restore a normal heart rhythm in the fetus. This treatment often prevents fetal heart failure. In other cases, where the heart defect can't be treated before birth, parents and providers can plan the delivery so that the baby can receive necessary evaluation and treatment soon after birth.


Can congenital heart defects be prevented? Most congenital heart defects cannot be prevented. However, there are some steps a woman can take before and during pregnancy that may help reduce the risk of having a baby with a heart defect:

• Take a multivitamin containing 400 micrograms of folic acid daily, starting before pregnancy. This helps to prevent serious birth defects of the brain and spinal cord and may also help prevent heart defects.
• Go for a preconception visit with her health care provider. At this visit, a woman should be tested for immunity to rubella and be vaccinated if she is not immune. Women with chronic health conditions, such as diabetes and phenylketonuria (PKU), should discuss adjusting their medications and/or eating habits to keep these conditions under control before and during pregnancy.
• Discuss all medications with their provider, even over-the-counter or herbal medicines.
• Avoid people who have the flu or other illnesses with fever.
• Avoid exposure to organic solvents, used in products such as paints, varnishes and degreasing/cleaning agents.

Are heart defects likely to recur in another pregnancy?
Parents who have already had a child with a heart defect do have an increased risk of having other affected children, often with the same heart defect. In many cases, the risk is low. Some heart defects have about a 2 to 3 percent chance of happening again (8). However, the risk may differ, depending on the specific heart defect. If a child’s heart defect is part of a syndrome of other birth defects, the recurrence risk in another pregnancy may be much higher.


Parents who have had a child with a heart defect should consult their pediatric cardiologist and can consult a genetic counselor to find out the risks to any future children. Parents who themselves have a heart defect also are at increased risk of having an affected child and should consider consulting a genetic counselor.


Is pregnancy safe for women with heart defects? Many women with congenital heart defects can safely become pregnant and have healthy babies. However, women with congenital heart defects always should check with their cardiologist before they become pregnant. Pregnancy can be risky for women with certain types of heart disease (including those with poorly functioning ventricles or high blood pressure in the lungs) (9).


In some cases, the mother’s heart disease or the medications she takes to treat it can affect the fetus, causing poor growth, premature delivery or other problems (9). Some women with heart disease may need careful monitoring by a high-risk obstetrician, as well as their cardiologist, throughout pregnancy.


Does the March of Dimes support research on congenital heart defects? A number of scientists funded by the March of Dimes are studying genes that may underlie specific heart defects or seeking to identify new genes that may cause heart defects. The goal of this research is to better understand the causes of congenital heart defects, in order to develop ways to prevent them. Grantees also are looking at how environmental factors (such as a form of vitamin A called retinoic acid) may contribute to congenital heart defects. One grantee is seeking to understand why some babies with serious heart defects develop brain injuries, in order to learn how to prevent and treat them.

Winter Wonderland

It was like 20 degrees outside to day, The husband got home from work early and the girl were home all day with me & Cameron. School started out 2 hours late but 7:30 school was cancelled. It must have been icky & blowing out in the country beccause it wasn't bad here in town.
 So until this afternoon I tried ny hardest to keep all three kids occupied, they actually did pretty good, the girls watched Sesame Street & Chuggington with Cameron this morning. Desiree & Megan ate their favorite breakfast (coco Puffs & Orange Juice) From two rooms away I could hear Megan Shout "I'M Cookoo for my Coco Puffs) She is my goofball that's for sure!
The deal was with Desiree & Megan that if they behaved & listened to me, that went their dad got home from work they could go outside with him when he went out to clean off the sidewalks.
 So I'm cleaning up the kitchen and feeding Cameron his Spagetti & smashed banana, I hear the girl's snowmobile outside.. Yup  it was the perfect day to be out enjoying the beatiful light snow coming down and the not so bad temp.
 I figured it was a perfect oppertunity to take lil man outside, I finished feeding him, changed his diaper and put on his snowpants, jacket, mittens and hat and his new winter boots.
He was so excited to be outside with the big kids... Right away Daddy grabbed him and took him on the snowmobile for a few laps around the backyard. Cameron had a blast!
Desiree & Megan even took him down their sliding hill that's in our backyard.
 Of course I captured a few moments when all three kiddos got along long enough for a few sweet pictures.

City of Le Sueur Mn CHD Proclamation

City of Le Sueur MN Graciously accepted my request to sign a CHD Awareness Week Proclamation.
  The mayor of the City sent me the proclamation, and a special note for Cameron.

He also let me know that The signed proclamation will be in the Le Sueur newspaper.

Challange & Accomplishments of Cameron Eating

It has always been a challange to get Cameron to accept different textured foods, We were told early on that Eating will be a struggle and to take things slow with Cameron and to follow his lead.
 We always made sure that Cameron got enough calories thru his bottle, but when it came to baby food, well take it nice & slow...don't push the subject. Introduce Cameron to stage One foods, and see how it goes. He didn't like them...he just wasn't interested. So we just kept going with his fortified bottles. Eventually it just wasn't enough, so we tried stage Two foods, he tolorated them better as long as we whipped them up in a bowl and made sure they were at a silky smooth consistency. Once we did that for him he chowed them down like there was no tomorrow!
Some days of course were better then others, somedays he would gag on the littlest thing, which would end up a big mess, he would gag so bad that he would throw up.

Do you give up after a gag/throw up session? we didn't, we would clean Cameron up and and calm him down and start all over. You can push the subject, but you can't give up either!
My dad would always say, "if you fall off your bike, are you just gonna walk away and never ride it again?"  Maybe the best advice my dad ever gave me growing up.
                  You can't give up..you just gotta TRY TRY TRY Again!
So we went grocery shopping one friday night, they didn't have any high calorie stage Two foods, I paniced, what should I do I asked my husband. He says "I don't know, But we gotta find some high calorie stage two foods". Well we didn't so I just grabbed some beach nut stage Three foods.. I figured I could just whip them really well and try that.
Cameron LOVED the stage Three foods, different flavors, different textures, and still high calories. It was a win win situation!
Over the next couple weeks I would whip up his food, making it smooth. He did great, so then I thought well lets try not mixing the food to make it smooth. At first Cameron wasn't to sure about it. Now he absolutely LOVES it. His favorite breakfast is Rolled Oatmeal & pairs, Favorite fruit is mixed fruit and his favorite lunch/supper is Chicken, Veggies mixed with tiny stars. He cant't get enough of it.
on a normal day Cameron will have about 1,000-1,400 calories (that is six 7 ounce bottles & 7 jars of food) and somedays he wants more.

Recently we decided to mash up who;e bananas and try feeding them to Cameron, we are so thrilled to see how well he has taken to "real" food.
 I can't feed it to him fast enough..he sits in his highchair with his mouth wide open. I love that Cameron is really taken to adult kind of food, bananas, white cheddar mashed potatoes, cottage cheese & Orange Cream yogurt.
We are finally moving forward with Cameron on food, we just keep trying and not being to pushy..he lets us know when he is ready!.

Cameron's mashed up Bananas & chicken with Stars jarred food

No Cameron your firetruck cannot drive thru your bananas

Look mom--I'm trying to be a big boy!

Messy face ;-)

attempting to eat his banana

um, What am I suppose to do with this?



Cameron ate his chicken & stars-- this is his smashed bananas



Retelling our Story

In October of 2009, I gave birth to Cameron Chase, he was born with a severe congenital heart defect. Cameron was missing part of his precious heart. My son was born with Hypoplastic Left Heart Syndrome.
Cameron Chase is now 16 months old, he was a handsome little baby, A head full of Dark hair (which at the time we thought it was gonna stay dark and be curly). I couldn't believe that after almost 6 long years of wiating and praying I finally got to be mommy to this special little baby. God had answered our prayers.. so we also knew that if we prayed hard to him again that just maybe he would answer our prayers again and help Cameron overcome the challanges of having hlhs.
  
I guess before I get to far ahead of myself, I should say that we found out about Cameron's special heart at my 21 week level II ultrasound. We are one of the lucky ones who knew ahead of time, but believe me it didn't make knowing easier... It gave me 18 weeks to think non stop about my son and his broken heart, to cry myself asleep as I thought about Cameron's chances of surviving such a severe CHD, to watch HLHS youtube videos and cry my eyes out because I was overwhelmed and terrified of the unknown future! It gave me more time to figure out the "best" way possible to tell my then 10 & 6 year old daughters about their sick baby brother.
     It was never easier knowing, however it gave us time to get some details & plans in order.
We had pretty much all the details & plans done by the time I had Cameron.
Girls would live at their Aunt Tammy's and spend the weekends at the hospital with us & Cameron. Virgil would be off work until things would look "up" and then when he would go back to work I would have his sister Shelly keep me company at the hospital and keep me calm.
 We would weather thru this massive storm, we would TRY to stay strong even though we knew it wasn't gonna be easy.
So October 15th Cameron had his first open heart surgery, he qualified for the hybrid instead of having the traditional norwood. He sailed through that surgery with no major complications, In no time Cameron would be moved from the picu to the stepdown unit, that's where we we had our stuggles. Eating, Cameron wasn't to sure about the suck swallow breathe pattern,
It took Him three weeks to get the pattern down, but when he got it, boy you better have been ready with a bottle!
I will never forget the day when they told us Cameron was ready to go home, I broke down in tears. tears of happiness, tears of being overwhelmed again and tears of relief. Finally at five weeks old, my little bundle of joy would be coming home to me, to Virgil and to his two big sisters Desiree & Megan, and to all the people who cared about him! it was a dream come true!
 For the Novemeber of 09 to April of 10 We went to weekly cardiology appointments in Burnsville one week and the next we would travel an hour or so to the U of MN Amplatz. Cameron would have weight, o2, blood pressure and length checks, followed by his echo and  a visit from Dr Dan Gruinstein.
from November of 09 till April of 2010 Cameron has had 6 heart caths, one of those didn't go well and a couple of those he coded on us as I was holding his little hand or talking to him tell him how much we were proud of him & how much we love him. Thankfully they brought him back to us each time,.
Cameron has had a blood clot & aneursym in the same groin, he has had to be on heprin treatments for that, thankfully the aneursym shrunk down after having numerous clotting treatments, he still has the blood  clot in his groin, but we deal with it. We do a daily baby asprin treatment.
  April of 2010 Cameron returned to the U of MN Amplatz for his bi-directional glenn surgery.
That was scary, the day of his surgery we get called back to a room to talk to Dr Saint Louis, when they went to crack open Cameron's chest they tore Cameron's heart, not their fault at all, Seems Cameron's heart grew attached to his sternum bone so when they went to open him up, his heart tore.
So they stitched up his torn heart and closed up his chest, and took him back to his room to recover.
The next day they went ahead with his surgery, he did good during the surgery, but after was a little touchy, When they went to move him into his hospital crib they bumped the line they had in his neck which pierced something which cause some bleeding, so Dr Saint Louis had toopen him up again wash out his chest, fix what was punctured and then he was ok. Of couse the night Dr Dan stopped in to check on him he coded right in front of him. So Dr Dan did compressions and after that it was smooth sailing. We spent a total of seven long days in the hospital.
 We had some awesome visitors from family & from Other heart families and some friends dropped off special gifts for Cameron. It took my breath away to see how many people really care about Cameron and love him!

Well now Cameronis about to celebrate his 16 month birthday, WOW, where has the time gone?
 Cameron is thriving and progressing nicely.
Last echo appointment he was about 20 lbs, he's finally getting longer, his o2 was around 86% and his blood pressure was ok, not hte best it's been but not the worst either.
 We talked to Dr Dan after his echo, he now has narrowing in his aortic arch which is why he is having problems with his tricuspid valve leaking (which will be getting replaced sooner then later we were told)
So Cameron has another echo appointment in April, that willbe the echo appointment when we find out when Cameron will be going into the cath lab, to get his aortic arch ballooned open.
 We take Cameron to a GI doctor for his constipation issues, he has been struggling with this since he turned one in October. Right now Cameron's GI Doctor has us giving him one full cap of Miralax in his first bottle of the day, everyday. Somedays it works and other days not so much.
We will be going in to the clinic for somemore tests to see what is causing this painful and daily constipation issue.

Starting Feb 1st Cameron & I will be going to our very first Toddler togetherness class. I hope that Cameron will love interacting with the other kids, right now the only kids he sees are his two older sisters and some of his way older cousins. I think this will be a great experience for him as it will be for me too.
I  usually don't do much without the husband or without my mom..I just feel so lost & overwhelmed right away, and I count down the minutes that we can go home. so i'm praying I do okay on my own.