An Answer to Prayer

For any of you that have been keeping up with my family, you know that my daughter had a cardiology appointment this past Tuesday. We were extremely worried for this appointment considering the results from 6 months ago.

At that appointment the doctor was concerned because she had dropped from the 40th percentile in weight to the 3rd. He was sure that this dramatic of a drop in weight indicated that her ASD was stunting her growth. If this was the case, than Ade would need to have open heart surgery to correct the ASD sooner rather than later. Something I freaked out a little about here. He gave us 6 months in which the goal was to keep her from dropping any further down the charts. If she was stable or showed any signs of gaining he would postpone the surgery for a little while.

Well, the little stinker apparently loves dramatics, because this appointment was another shocker.  Not only is she no longer in the 3rd percentile, she isn’t even in the 40th. She is now firmly in the 45th percentile according to his charts.

That’s right, I said 45th!!!!! She didn’t just stay stable, gain a little, or return back to her previous percentile; she gained past that.

The doctor was astonished, asking if we had changed her diet in any way or found out that she was allergic to something (like milk). He stood there and shook his head for a few minutes before announcing that he would not need to do a costly echocardiogram this visit nor see her for another year! He said at that time he would do an echocardiogram and that although he is fairly sure her ASD will need surgical correction (at the age of 6) there is a chance that it may never bother her enough for even that!

Are you as floored as we are? We stumbled through the rest of the conversation with him and the nurse and remember very little of what was said because we were so stunned. What a difference 6 months (and countless prayers from those of you that read this and many others we know) can do! This is better news than we could ever have imagined.

Thank you everyone who has been keeping us in your thoughts and prayers. I have no idea how to express just how thankful we are to every one of you!

What an incredible answer to prayer!


I’m doing it again.

I’m freaking out.

AJ’s Cardio appointment is in a week. Those 6 months have gone way to fast. WAY TO FAST.

She has gained about 6lbs in the last 6 months. Turns out, there are a million different Infant Growth Charts out there. They range from placing her in the 90th percentile to the negative percentile. So I did a little research and according to the CDC’s website the ‘official’ chart is the WHO Child Growth Standards. Her weight at her last appointment 6 months ago placed her a little bit below the 50th percentile.  Her current weight places her firmly between the 50th and 85th percentile.

To say that I am happy about that is an understatement. However, being the fretful mother that I am I can’t help but wonder if it will be enough. He obviously is using a different kind of chart, since he said she was around the 4th percentile at her last appointment. What if her growth isn’t enough according to his charts? What if he still recommends that she have open heart surgery?

Please, pray that it will be enough and that we can put off another cardiology appointment for another year. Please.

March of Dimes Walk Update

Along with my mom, we packed up Ade and drove a little over 2 hrs into Oklahoma for the March for Babies walk that I talked about a few months ago. We had a blast, not only getting out to support a great cause, but spending some quality time just us girls. It was a beautiful 85*F out, so we shed our jackets from being in chilly Kansas and enjoyed the weather on the courthouse square of Perry, OK. It was a short event, but totally worth the drive and time it took to participate.

It’s really a beautiful little town. I wish I could show you, but you know me, I am horrible with remembering to take pictures. We are already planning next years walk, although we are hoping to be able to make it to a Congenital Heart Walk (the closest one this year was in St. Louis and we just couldn’t make it) next year along with the March for Babies walk closer to home.

I really want to encourage everyone to get out for these events! I’m sure you can find one happening near you at least once a year and it is a great time to get your family out and involved with a great cause!

Update on AJ

For those of you that have been interested in her ASD I thought I would give a general update.

She is doing great, besides being a cranky little brat. She appears to have at least 6 molars coming in all at about the same time, so I guess I would be a cranky brat too. We love Hylands Teething Tablets and Hyland’s Homeopathic Teething Gel ($1.02 on Amazon, check it out! (this is an affliated link just so you know)). They are a great natural way to relieve the pain and calm her down (and from what I can tell, they really work!).

Anyways, we believe she has finally hit 20 lbs (according to a home scale). I can’t decide if I think this is good or not. She was approximately 18lbs 14oz at her cardiology appointment at 12 months old. She is now almost 16 months old, so in 4 months she has gained 18 oz. That just doesn’t seem like very much (especially compared to the amount of food she eats!!)

Of course it is a constant worry that she isn’t gaining enough, I hate having what feels like a ultimatium hanging over our head about her surgery. It makes me get all panicky if she isn’t eating well (because her teeth hurt, isn’t in the mood, etc.). Of course most of the time she eats more than I do it seems, but occasionally she doesn’t want to eat hardly at all. Not something I deal with very well. On those days though, we usually give her a liquid ‘meal’ type of product. A fruit smoothie (has to be all natural, with no added sugars or homemade) or PediSure for instance.

Of course, she doesn’t notice a thing when I’m worrying. She is to busy being herself and investigating everything. Little stinker thinks she is pretty big stuff. Not 100% on what her verbal skills are ‘suppose’ to be, but I think she is doing pretty well. She has a lot of very involved, complicated conversations with herself. They are just gibberish to us, but she is so much fun to listen to.

Bran and I think she knows somewhere between 15-20 words that she will use on a regular basis. Of course her vocabulary grows bit by bit every day. I can’t wait to hear her say ‘I love you’.

I meant to take some pictures of her to put with this post, turns out there isn’t much time to snap pictures when I’m chasing her around. 😉 The truth is I often just forget my camera. I promise to get some pictures up soon, plus I finally finished one of the crafts on my first Top Ten list that I can’t wait to show you. It’s the melted crayon one, so it totally pertains to this post since it’s for Miss Ade-Tude.

Well, that’s it from my household today, I hope you are having a Blessed Day!

March of Dimes

I recently decided that I really wanted to do something to help with birth defect research. I thought long and hard about doing a walk with The Children’s Heart Foundation because they support a walk specifically for Congenital Heart Disease (CHD) (here is their website, check them out and please participate if you can!). Unfortunately the closest walk was in St. Louis and happens shortly after we get back from vacation and I didn’t think it would be a good fit. Hopefully they have a walk next year closer/at a better time for us.

So, instead I decided on a March of Dimes walk. I went to their site hoping there would be one close by, since there are a few pretty big cities not to far away, shouldn’t be a problem right? Well, the closest one that would give me enough time to raise some $$ for the walk is around 130 miles away (better than the almost 500 to STL). Oh well, got to work for something you care about right? Plus, it starts at 5pm so that gives me plenty of time to drive to Oklahoma that day. Speaking of working for something, I’m also trying to raise $1200 in donations for this walk. Since the walk is in 69 days that means I need to collect around $20 per day. That seems reasonable right? Ugh, hopefully. I may have gotten myself in over my head but I really wanted to set a goal higher than what I felt I could easily reach.

I know that March of Dimes doesn’t focus solely on CHD research and awareness, but the more I thought about it, I came to the conclusion that it really would be the best option. Just because ASD is what affects my family, doesn’t mean that it is the only thing I need to support. Although a March of Dimes grantee did identified a gene that can cause atrial septal defect!

Even though CHD is the most common kind of defect, so many babies are diagnosed with other defects or born prematurely and I really like the mission of March of Dimes to strive for a future were babies are born full term and healthy.

Please help me with my walk by donating or participating in a walk of your own! I would love to have some people join AJ and I too!

More CHD resources:
Congenital Heart Information Network
Little Hearts
The Children’s Heart Foundation

Birth Defect Registry

A resource I have found for information on birth defects is A little about what they are from the site:

Birth Defect Research for Children, Inc. (BDRC) is a 501(c)(3) non-profit organization that provides parents and expectant parents with information about birth defects and support services for their children. BDRC has a parent-matching program that links families who have children with similar birth defects. BDRC also sponsors the National Birth Defect Registry, a research project that studies associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

You can go here to request free information on numerous kinds of birth defects. I recently requested information on heart defects and after a few days received a PDF via e-mail. Something I found interesting in the e-mail:

Approximately 30,000 to 40,000 (or 1 in 100) children are born each year with heart defects.

Sound familiar? 1 in 110 children are believed to fall within the Autism spectrum. Scary statistics. Also on this site is a page with lots of information on environmental and chemical fact sheets.  Also a link to Green Family Market, here. Use this website to find “green”, safer, earth-friendly and organic alternatives for the products you need to take care of your family, home and garden.


Why Aren’t Birth Defects A National Priority?

Original article here. But, I went ahead and copied and pasted here because I wanted to emphasie a couple places in the article.

The Leading Cause Of Infant Deaths Exposed

Editor’s Note: Every year, one in every 33 babies (about 120,000) born in the United States enters the world with a birth defect.
Thousands of different birth defects have been identified and birth defects are the leading cause of death in the first year of life. Still, we don’t know the cause of most birth defects – an especially scary fact for any pregnant woman hoping to protect her unborn child. Today, we highlight this vast gap in understanding and one organization valiantly fighting to turn things around.

Rachel Thomas, Birth Defect Research for Children:

I was very moved when I read the “Our Story” portion of the Healthy Child Healthy World website. Like Nancy Chuda, I was also exposed to pesticides during my pregnancy. My previous employer decided to ignore the pesticide company’s warning not to spray an area where a pregnant woman was present. The office manager assured me that they wouldn’t spray pesticides in the office but then did so behind my back and told me about it weeks later. (By law, pesticide companies do not have to post a sign inside any building notifying people that they applied pesticides; oddly they are required to post signs outdoors only.)

I was very upset at the time because I knew that this could put my baby at risk. I hoped for the best but unfortunately my daughter was born with several birth defects. The injustice of this situation really bothered me. I decided to research the environmental causes of birth defects to see what I could do to help others from falling victim to this type of situation.

What I discovered was shocking to me. No government agency or research center was monitoring all the pre-natal environmental exposures of parents who have children with birth defects or childhood illnesses. The only organization monitoring the pre-natal exposures of both parents was Birth Defect Research for Children (BDRC) through their National Birth Defect Registry.

Birth Defect Research for Children’s (BDRC) mission is to find the causes of birth defects. Their National Birth Defect Registry (NBDR) is a powerful tool they use in discovering those causes. The Registry was designed through a collaboration of seven prominent scientists. It collects information on all categories of structural and functional birth defects as well as the health, genetic and environmental exposure histories of the mothers and fathers. The data are then analyzed to look for patterns of birth defects. Pattern identification is how most of the major environmental causes of birth defects were first discovered including the effects of thalidomide, radiation, rubella, methyl mercury, DES, Dilantan and others.

Although my story has a happy ending and my daughter is doing extremely well today, many other children born this year will not be so “lucky” because birth defects remain the leading cause of infant death in the United States. According to state birth defect registry statistics, many birth defects are rising significantly.

For example birth defects such as Gastroschisis, Atrial Septal Defect and Hypospadias are showing prevalence rate increases of over 100% in some states.

According to the National Research Council, a woman who gets pregnant today has a 50% chance of losing her baby or having a baby with a birth defect or chronic illness. The health of our children is important on so many levels – social, emotional and economic. In 2004, birth defects accounted for hospital costs totaling $2.6 billion. Add that to the additional services that will be needed to accommodate the significant increase in conditions like Autism and asthma, and we’re looking at astronomical cost. According to a recent report from Mt. Sinai School of Medicine, it costs $76 billion to cover the health expenses of American children because of exposure to pollutants.

In light of these sobering statistics, it seems that finding the causes of birth defects and developmental disabilities should be a national priority. At the bare minimum each state should track the number of birth defects in their state to help identify a base line and to document increases that need to be investigated. Yet Alabama, Pennsylvania, Montana, Wyoming, Idaho, Oregon and South Dakota and the District of Columbia do not have birth defect registries at all and one of the largest states, California, only monitors 70,000 out of 526,774 births each year.

If you are concerned about the rate of birth defects in your community, please contact Birth Defect Research for Children. And, if you want more information about participating in the National Birth Defect Registry, click here.

I shouldn’t have…

…but I did.

I started researching pediatric open heart surgery. It’s better to be informed, then go blindly along right? Perhaps, but I feel sick to my stomach now. The Cincinnati Children’s site was informative. However, it just doesn’t feel right to think about AJ and read things like this:

Open-heart surgery generally refers to operations performed on the heart that require a patient being placed on the heart-lung bypass machine. The heart-lung bypass machine takes over the function of the heart and lungs to provide oxygenated blood to the body.

The heart can be stopped with a solution called “cardioplegia.”

Cold saline irrigation (salt water) over the heart is used to protect the heart while it is stopped and without its own blood supply.

To get access to the heart, the surgeon has to open the chest; cut through the breast bone (sternum). This is referred to as the sternotomy.

After the chest is opened, a part (or all) of the thymus gland is removed.

The heart sits in a thin, leather like sac called the pericardium. To get access to the heart, the pericardial sac has to be opened. The surgeon often removes a small portion of the pericardium, to be used later to patch holes in the heart.

The risks of bypass itself include inadequate perfusion of organs or tissues, activation of a systemic inflammatory response, and embolization of air or particles.

Both air and clots can break lose and embolize, and can cause a potentially dangerous event such as stroke.

The need for re-operation for bleeding following open-heart operations is low, about 1 to 3 percent.

Atrial septal defect occurs in about 6 percent to 8 percent of all congenital heart defect cases.

Ninety percent of ASDs require no treatment, because they close by 18 months of age.

Some patients require temporary or even permanent pacing.


My heart hurts, my stomach is churning and I’ll go to bed tonight praying for a miracle. Praying that AJ won’t keep dropping down the growth curve, praying that her heart will be perfect the next time they hook her up to a machine, and praying that I never have to sign a paper giving a surgeon permission to stop my baby’s heart, permisson to let them keep her alive on a machine because she is less likely to die THAT way.

Good and Bad News from the Cardiologist

According to the echo it appears that the ASD is stable, and not getting much bigger. The left side of her heart is enlarged from the excess flow. However, Dr. Allen is concerned that she isn’t growing according to the normal growth curve. Since her last appointment with him she has gone from the 40th percentile to the 3rd percentile. He believes that the ASD is to blame since she is healthy otherwise and eats like crazy! It concerns him that the ASD appears to be stunting her growth. He wants us to come back in 6 months and track her weight between now and then. At that appointment if she has not improved he said that we will probably have to discuss open heart surgery to fix the ASD. Thankfully he is willing to wait 6 months to see if there is an improvement; although he seemed worried about her current growth trend.

Countdown to Friday

Today, or rather last night, began the countdown to Friday. This countdown is marked by sleepless nights, constant anxiety, and lots of prayers. Why do you ask is Friday so important?

Because, Friday, June 24th at 1:00 pm is AJ’s next cardiology appointment.

Background: At AJ’s four-month appointment her pediatrician was listening to her heart when he noticed a heart murmur. Not uncommon he says, but wanted us to take her to the hospital to have an echocardiogram. That was horrible. Took over an hour and AJ refused to be still. I think they finally just gave up and decided what pictures they had would be good enough.

Well, they probably were good enough, because they let the doctor know that she appeared to have what is call an Atrial Septal Defect.  This link is great for explaining just what an ASD is and the common treatments. In that article they talk about how some smaller ASDs will close on their own, without the need for medical intervention. This is where the prayers come in, because AJ’s Pediatric Cardiologist, Dr. A, told us in no uncertain terms he was confident that hers would not close on its own and that she would need to have a heart cath (also explained in the article, pg 3) to fix hers. That doesn’t mean that I’m not going to stop hoping for a miracle. At least he seems confident that it won’t require open heart surgery, silver lining!

Amazingly, the first time we found ourselves sitting in his examination room he took one look at her and asked us why she was there. I looked dumbfounded at him and told him that our pediatrician, Dr. Issy,  had sent us. He smiled, and confirmed that he had talked to him but upon looking at her wasn’t convinced that anything was wrong with her. He went on to explain that the poor quality of the echo may have led the technician to believe that she had an ASD when in fact it could just be a shadow. Apparently, this has happen before to him.

But, since we were in his office, he went ahead and wrapped her up to do an echo himself. He turned her into a little burrito and in less than 15 minutes had crystal clear photos of her heart.

Unfortunately, he did find her ASD.

He showed it to us, in real-time. I will never forget that first look into my baby girl’s heart, watching it pump away with what looked like a flap of skin floating in the breeze between the atrial chambers. Dr. A explained that was supposed to be a wall. He classified her ASD as medium and stable.

So far, thankfully, it hasn’t gotten any worse. That however, does not keep me from worrying every time an appointment comes along. The kicker to this Friday’s appointment is that Bran will not be able to go along. I know I’ll be okay, I even know almost 85% sure what the doctor will say. But that doesn’t make me dread it any less.

So here goes a week running on anxiety and caffeine….