Just a few more days...

Hi Everyone,

We just wanted to let everyone know they've bumped us up a little and Amy will now be going in to be induced at 8 pm on Monday. She hasn't dilated as much as they would like at this point so the Doctor thinks labor may take a little longer. Labor can obviously be unpredictable and he's doing his best to time the delivery for when all of the necessary Doctors can be there.

Thank you for the prayers and encouragement over the past few months. Please continue to think about us in the next few weeks as Amy gives birth and Matthew has his heart surgery. Matthew's surgery isn't set at this point but we know it will happen some time between 3 and 10 days after he's born.

Love, Craig & Amy

Plans...

We just scheduled induction for 6:30 AM on Tuesday, November 6, which is 2 weeks from this coming Tuesday. We had another check up on Friday and baby and mom are doing very well, all things considered. He's continuing to grow and put on weight which is such a big deal for babies with congenital heart disease. A sonogram measured him at just over 6 pounds.

Go Bears!

Tests, Tests and more Tests...

Hi Everyone,

The September 20 fetal echo was relatively uneventful. The previous results were confirmed although they did throw in that Matthew may have an interrupted aortic arch but the cardiologist said they couldn't see it very well. It sounded bad to us but apparently the Damus-Kaye-Stansel procedure that they will perform after he's born will essentially result in a "patch" over that area anyway. The cardiologist wants to do one more fetal echo before he's born so we scheduled another for late October. Amy usually gets hot flashes and nauseous from laying flat on her back so long during this test so she's not particularly excited about another one. Although, she would do one everyday if they told her it would help him.

We've been a little all over the place with the day they want to induce. Our Perinatologist decided he thinks we should induce on November 6. Then, the Cardiologist and Neonatologist told us they didn't want her to induce early and she needed to get as close to her original November 16 due date as possible (bigger babies handle the surgeries better). Now, her OB Doctor told us last week that Amy's platelets are starting drop too much and November 6 is going to be a good goal for her (low platelet counts are bad for mom and for baby). So November 6 it is and that's what we're going to plan for.....until our next appointment.

Thank you for your prayers.

Love, Craig & Amy

More Tests...

We have another echo scheduled for tomorrow. We're hoping for goods news, but expecting to just have the diagnosis confirmed. I keep having these day dreams where we go in for one of our many tests and they tell us this has all been one big mistake. It's kind of like when you have a day dream about inheriting a bunch of money and paying off all of your bills. Good times.

We're also going to meeting with one of the neonatal doctors who will be taking care of Matthew after he's born and we're taking tours of the Neonatal Intensive Care Unit (where he'll be before surgery) and the Pediatric Intensive Care Unit (where he'll be after surgery). It feels good to know that a plan is finally coming together.

Love, Craig

Small Victory...

Hi Everybody,

Finally some positive news. Often when children are diagnosed with Congenital Heart Disease they also have some other form of defect present outside of the heart. We had another sonogram this week that showed no other defects with our baby boy. Hallelujah!

It looks like our Doctors are setting November 6th as the likely date for Amy to be induced. If that date stands, he will then likely undergo his first surgery on or around November 11th. Thank you for your continued prayers. We've had a lot more peace this week and we know it's because you are all praying for us. We could not do this without you.

Love, Craig & Amy

This News Hurt...

Hi Everyone,

Amy and I wanted to give you an update after our appointment with the pediatric cardiologist in Peoria today. I've been trying to find the right words that would allow me to spin this in some sort of positive light, but I'm sad to say that those words are escaping me at the moment so I'll just get right to the details. I'm sorry this email is so long. I tried to write it without all of the medical details, but it felt like I was leaving out too much. I also want to apologize to anyone with a medical background because I may get a few a these things mixed up.

In reading this it may be helpful to know that the human heart has 4 chambers. The left and right atrium are on top. The left and right ventricle are on the bottom. Blood is normally flows through valves from atrium to ventricle.

We went into our appointment with a preliminary diagnosis of Hypoplastic Right Ventricle which was thought to be due to pulmonary atresia (valve between right ventricle and pulmonary artery didn't form properly). We've been holding out hope that the ventricle was simply deflated because of the pulmonary atresia, but could be opened by using a balloon to dilate the valve. Today, a fetal echocardiogram (echo) confirmed that our baby does have the hypoplastic right ventricle. Unfortunately, the echo showed that he actually has Tricuspid Atresia which in his case means the valve that would normally control blood flow from the right atrium to the right ventricle simply did not form at all. The echo also showed that he has an Atrial Septal Defect (hole between the 2 upper heart chambers) and a Ventricular Septal Defect (hole between the 2 lower heart chambers). In this case the 2 septal defects are actually a good thing because when he's born they will allow at least some oxygenated blood to flow through his body.

Our biggest surprise was that the echo also showed that he has another heart condition called Transposition of the Great Arteries. The "great arteries" are the pulmonary artery and the aorta. Normally, the pulmonary artery is connected to the heart's lower-right chamber (the right ventricle) which pumps oxygen-poor blood into the pulmonary artery, which carries blood into the lungs. The lower-left chamber (the left ventricle) pumps oxygen-rich blood into the aorta, which carries that blood to the rest of the body. In our baby's case, the normal position of the arteries is reversed. The aorta comes out of the right ventricle and the pulmonary artery comes out of the left ventricle.

The problem with this set-up is that oxygen-rich blood returns to the lungs while oxygen-poor blood gets carried to the rest of his body. So, the only way for oxygen-rich blood to reach his body is through the atrial septal defect (hole that allows blood to flow blood between the 2 upper chambers) and the Ventricular Septal Defect (hole that allows blood to flow between the 2 lower chambers).

In summary, shortly after he's born he will need open heart surgery involving 2 steps. One will add a shunt that will allow the blood to bypass the right ventricle and still pass through his lungs to pick up oxygen, the other (called the Damus-Kaye-Stansel procedure) will address the Transposition of the Arteries. Then, at 4-6 months he will have a second open heart surgery (called the Glenn shunt procedure) and a 3rd at 2-4 years old (called Fontan procedure). The 2nd and 3rd surgeries are the additional steps required to allow his heart to function without his right ventricle.

We are obviously sad, scared, confused and frustrated by this and are taking the very news hard. Please continue to pray for our family.

Thanks, Craig & Amy

We Have No Idea What Happened This Day...

Hi Everybody,

Unfortunately, we had a long day in Chicago Monday where it appears that the scheduler misunderstood the purpose of our trip and we were mistakenly scheduled to see an adult Cardiologist who wanted to do an exam of Amy's heart instead of the baby's. We attempted to get things straightened out but at the end of the day we decided to just laugh it off simply because it seemed like more fun than crying.

In the meantime, we have finally scheduled an appointment with the Cardiac team at St. Francis in Peoria for August 20. We're blessed to have one of the best children's heart surgeons in the country right here in Peoria and we are really hoping to have the procedures done here.

On another note, we received a letter this week from our specialist in Peoria stating that he believes the Hypoplastic Right Ventricle is being caused by something called Pulmonary Atresia. In Pulmonary Atresia no pulmonary valve exists (or is completely blocked) so blood can't flowing from his right ventricle to his lungs.

If nothing else, this information will allow us to pray more specifically going forward. Thanks again for all of the prayers and the emails. It really does help to know there are others who care so much.

Love, Craig, Amy & Taylor (& Baby Boy)

More Answers?

Hi Everybody,

We were able to schedule tests at the University of Chicago - Comer Children's Hospital on Monday. We really want to see the cardiac team in Peoria but we're having trouble getting in so we're going to go to Chicago to get another opinion while we wait. We're praying that whatever is causing the problem with our baby's heart ventricle is easily identifiable and easily fixed (if not gone altogether).

Please continue to keep us in your prayers.

Thanks, Craig, Amy & Taylor

Bad News Today...

We received bad news today. Our baby has been diagnosed with a hypoplastic right ventricle. This is a serious congenital heart defect where the right ventricle fails to grow and develop appropriately. Amy and the baby should be ok to carry full term, but problems will begin immediately after birth, when his body must distribute oxygenated blood on its own. Unfortunately, our baby boy's right ventricle barely exists. There is no way to repair the ventricle itself. We will have to rely on a series of procedures typically performed over 3 separate surgeries that will ultimately bypass the right ventricle altogether. The first surgery will be performed almost immediately after birth.

As you can imagine we're very nervous and scared right now and we're both taking the news pretty hard. Amy may not be able to go back to work after he's born because of the constant care required. This is something we had not planned for and is pretty concerning in itself. Please pray for a miracle for our little boy and continue to keep our family in your prayers. We know that's the only way we'll be able to get through this tough time.

At this point we're waiting to schedule an appointment with a cardiac team that will begin laying out our course of action. We'll keep you posted as we learn more.

Love, Craig, Amy & Taylor

Hope...

Hi Everybody,

Here is our update. We're going to the hospital on Tuesday morning at 7:00 am for a level 2 sonogram and EKG of our baby's heart. We will then see a high risk pregnancy doctor who is specialized in cardiology to discuss the findings and what our options are. Our regular OB doctor told us that sometimes a level 1 sonogram detects a problem and then a level 2 will show that everything is normal - so that is our prayer. We are finding peace because we know that God will give us the strength to handle whatever the outcome will be.

We appreciate all the prayers and will let you know on Tuesday what we find out.

Love, Craig & Amy

The Road Begins...

Hi Everybody,

Amy had a 20-week sonogram today that showed our baby has an enlarged left ventricle in his heart which could mean congenital heart disease. We're going to have a level 2 sonogram (more detailed resolution) as soon as possible that should tell us more. We're a little scared about this news and just ask that you keep us in your prayers.

Thanks, Craig and Amy