Already worried...

It is hard for me to not worry about Max. Right now I feel that he is safe and sound in his cocoon of Mommy love but what happens when he enters this bright, cold world? With him tucked peacefully inside of me I know that my body is helping compensate for what his body might be lacking. What will happen to his body when it is forced to function independently? Will he be strong enough? Will his heart provide enough oxygen for his blood stream until surgeries are performed? Will he have the energy to do all the things that life require of him? I do take comfort in knowing that at first his life will be simple enough (as it is for all newborns)- eat, sleep, poop. But what happens when Morgen tries to hold him or play with him? Will Max be strong enough to endure brotherly love from Morgen who is still learning the concept of being gentle?
It is so hard to imagine what to expect. With Morgen I was anxious to see my baby for the first time, to smell his head, to feel his weight in my arms, to hear his gentle coos. And with Max I am anxious for all the same things but it is strange to have those happy anxieties along with all the worry of knowing he will not be physically healthy. The doctors are perfectly confident that Max will be fine. They have every reason at this point to believe that with the surgeries planned my Max will be active, healthy and able to keep up with all the curiosities this world has to offer a little boy. But in my mommy heart I feel the only reassurance I will receive will be the day I get to snuggle my baby and feel his tender heart pumping against my chest. I still have 3+ months to wait and until then I will have to trust in the doctors and patiently wait for Max to get big enough to face this world.

Latest Update...

I had a doctors appointment today along with another ultrasound. Max is doing great! He is growing at a perfectly normal rate and is weighing in at 1 lb. 6 0z. (that puts him at the 50% mark on a fetal growth chart). Although it is somewhat inconvenient that my routine appointments last 2 hours instead of 10 minutes I love that I get to see my boy so often. At every appointment I will have an ultrasound so the doctors can track Max's progress and make sure that he is continuing to grow.
I feel really blessed to be a patient at the NW Perinatal Center. The doctors, nurses, technicians, and even the office staff are amazing. Everyone is helpful, genuine and never give the impression that they are in a rush. For example, today I was able to sit down and talk to my doctor, Santosh Pandipati, and tell him about how things are going with my family, discuss how I am feeling physically and emotionally, listen to his advice about what to expect for the delivery of Max, ask questions about the cardiologist, Dr. Douglas King, that diagnosed Max, etc. When I was pregnant with Morgen I was lucky to have 5 mintues of my doctor's time at a routine appointment. Normally I would weigh in, pee in a cup, check my blood pressure, listen to the heart beat and make my my next appointment for 4 weeks. In and out in less then 10 minutes. Since Max is far from a typical and healthy baby I just love that this practice of doctors truly want to help and ease any worries that I may have.
Another example of how special this office is came in the form of a phone call. A lady from the billing department called and left me a message telling me that she needed some information about getting a referal for my appointment with the cardiologist. Ugg! Insurance calls are always so complicated and time consuming. Well you can imagine my surprise when I called back and instead of being stuck in a maze of voicemail, the billing department picked up right away, as soon as I said my name the girl knew who I was and knew why I was calling. She explained the situation and told me what they had done to resolve the problem with getting the referal from my primary care physican. That was basically it. They had already done all the work. They just wanted to call to tell me what they did so I did not have to worry about. I have never had that happen before. Normally any phone call I recieve regarding insurance is a headache- how nice that this office is helpful and willing to work with me to figure out any insurance complications.
In 4 weeks I have 2 different appointments scheduled- one with the cardiologist and another with my perinatologist. In the meantime we hope Max will to continue to kick hard and grow strong!

A moment of peace...

A few nights ago Morgen woke up in the middle of the night crying. Normally we let him fuss himself back to sleep but his crying escalated to the point of panic so I went into his room to get him. As soon as I picked him up his entire body melted to mine in a state of total relaxation and exhaustion. I sat down in the rocking chair and took advantage of the moment that my son was calm, still and wanting to snuggle his mommy. We sat in the dark rocking gently for about 15 minutes. Slowly I could hear his breath settle into a normal pattern, I could feel his body slump even further into sleep and I felt the moisture from his drool seeping though the shoulder of my shirt. I was just about to put Morgen back into his crib when I felt little Max wake up. He was suddenly kicking with all his itty, bitty might against my tummy. It was a strange sensation to have one son in a deep slumber against my shoulder and my other son perfectly awake and active moving inside of me.
At that moment I felt total peace.
I know my Max is strong and will be a part of our loving family forever. I know my Morgen will be an example and friend for his little brother. I love my boys. I am so grateful for the opportunity to be a mother.

Max's Heart...

With Max we know we are dealing with a congenital heart defect. The word congenital means inborn or existing at birth. In the previous post I explained how a normal heart functions- I would suggest reading that first if the heart is not something you are very familiar with (like me). Max's heart is functioning very differently then a normal heart.
The basic "problem" with Max's heart is that he is operating with only 3 working chambers. His right ventricle is completely non-functioning. Or as the cardiologist put it, "his right ventricle is like a shoulder pad- it takes up some space and it is moving with the left ventricle but it is not performing any function." A single ventricle heart is a defect that is quite complicated because simply his left ventricle is doing double the work. That single ventricle not only needs to pump blood to the lungs, it also need to pump blood to the body. And the main problem with a single ventricle heart is the mixing of "blue" and "red" blood within the ventricle. For a more medical description of single ventricle heart conditions you can click here.
Another defect of Max's heart is called Atrial Septal Defect (ASD). This means there is a hole between the right and left atrium causing the red and blood blood to mix in the atrium. In Max's situation the cardiologist said this is actually a good thing. Since the red and blue blood will be mixing in the atrium it will decrease the amount of work the left ventricle will have to do. I do not understand exactly how that works but if the doctor says it is a good thing then I will trust him. Here is a picture of a heart with ASD (click on picture to enlarge):Max also has a Ventricular Septal Defect (VSD). It is very similar to ASD except that the hole is between the right and left ventricle. Since Max's right ventricle is considerd non-funtioning the VSD is not an issue that is a big concern to the doctors at this point. There may be some blood flow back and forth between the right and left ventricle but at this point it does not seem to increase or decrease the amount of work that his left ventricle is having to do. Here is a picture of a heart with VSD (click on picture to enlarge):Dextrocardia is another thing that makes Max's heart unique. Dextrocardia literally means "heart on the right" so Max's heart is actually a mirrored image of what a normal heart looks like. This isn't considered a defect, just a way to describe what his heart looks like. And the fact that his heart is flipped the wrong way is not effecting the funtionality of his heart. For more information you can click here.
And the last thing the cardiologist diognosed Max's heart with is Transposition of the Great Arteries. Looking at Max's heart both the pulmonary artery and the aorta are attached to his left ventricle. In a normal heart this would cause a lot of problems but since Max is only operating with his left ventricle this is actually helping him. His left side is the side that is working so it makes sense that both main arteries are connected to the left side. Of all things we discussed with the doctor this was the most confusing to me but I am sure as I learn more I will understand how the transposition will work with Max's heart.
Okay... that is everything we discussed with the cardiologist. I am sure there will be a lot more details as we continue to meet with doctors. It really sounds like an overwhelming amount of problems but it is amazing how some problems are actually helping ease the stress of a different problem. The body is amazing. And it is amazing that doctors were able to detect these problems and have the knowledge and experience to be able to fix Max's heart. We know that additional issues might arise as he continues to grow but the best thing we can hope for is that his heart will continue to develop at the same rate.

The Heart 101...

I thought I would explain (as best as I can) how a normal heart works because that will help me explain how Max's heart is different.
A normal heart has four chambers. The upper two chambers are the atria and the lower two chambers are the ventricles. Blood is pumped through the chambers, aided by four valves. When we met with the cardiologist he described the blood pumping through the heart as either blue blood or red blood. The blue blood is low in oxygen and the red blood is oxygen rich. The basic way blood is pumped through the heart follows this pattern: blue blood flows back to the heart after circulating through the body. It returns to the heart through veins and enters the right atrium. This chamber empties blood through a valve into the right ventricle (B). The right ventricle then pumps the blood into the pulmonary artery. From there the blood goes to the lungs where it gets fresh oxygen (C). That blood is now refreshed with oxygen and is considered the red blood.The red blood returns by the pulmonary vein into the left atrium. From there it passes through a valve and enters the left ventricle (D). The left ventricle pumps the red blood out through the aorta and the aorta take the blood to the body to circulate (E).
Now that is my basic understanding. I apologize to anyone with a medical background if I totally butchered that process. Please let me know if I am missing a step or not explaining things correctly because I want to make sure I understand the proper function of the heart.

Results are back...

We got a call from the geneticist on Friday letting us know that the results from our amniocentesis were back and all of Max's chromosomes look perfectly normal! What a relief! Now we know we are dealing with a congenital heart defect and do not have to worry about any additional physical or mental problems.

Ouchy Tummy...

This is the bruise left from the amniocentesis. My belly seems to get a little bigger each day which means Max is growing!

First Round of Tests...

We got a call today from the geneticist that we met with during our first appointment. She was the one that explained what an amniocentesis is (where they take fluid from around the baby) and why it would be recommended in our situation. Basically when an amino test is preformed the doctors are able to check all the chromosomes of the baby and look for any abnormalities. With the condition of Max's heart the doctors want to know if they are dealing with a genetic problem (hence the amnio test), a congenital heart defect (a defect in the structure of the heart), or a combination of both.
The "best" situation would be a congenital heart defect because that would mean it was only going to effect Max physically and would have a higher chance of being "fixable." If there is a problem with his chromosomes then there would probably be other side effects- mental retardation, other physical challenges, etc. It takes 2 weeks for all the chromosomes to be checked but they are able to check the main chromosomes in a matter of 24 hours. The test to check the main chromosomes is called a FISH screen. The main chromosomes they check are 21, 18 and 13. Problems with #21 are what cause Down's Syndrome. And I attached a link to a page that explains side effects of problems with #18 and #13.
Max's results for #21, 18 and 13 were all negative!!! There are still all the other chromosomes to check but it was nice to hear some good news.
http://pedclerk.bsd.uchicago.edu/chromosomalabnormalities.html