TODAY'S THE DAY...

We are at the hospital. After an exam with my doctor this morning he decided that I needed to be induced today. Max will be here soon!!! We will post more when we can. Please say an extra prayer that Max will be strong.

False Alarm...

Today we had a false alarm. This afternoon I thought my water broke. I was feeling fluid trickle for a few hours at home. When I called my doctor's office they told me to go to the hospital so I could be examined to determine if my water actually broke or not. Well after going through the whole procedure of being checked in, answering all the health related questions, being hooked up to monitors and being examined by the doctor they said that the fluid I was leaking was not amnionic fluid so I was sent home. What was the fluid you ask- your guess is as good as mine. Being pregnant does some weird things to your body.

Having my doctor tell me to go the hospital I immediately felt adrenaline. I let myself get excited anticipating that today could be the day. We packed a hospital bag, grandma was here to watch Morgen, we had the camera battery charged... we thought we might have a baby today. It is hard to not feel disappointment and frustration that I now still have to wait. But at the same time I am so relieved. I was not ready for Max to arrive 2 weeks early. I still have a lot to do to feel "prepared" to bring a newborn home. Plus, throughout the entire pregnancy the doctors have told me that they want Max to get as big as possible so being 2 weeks early could have caused more complications.
Hopefully this won't happen again until it is the real thing. It sure made for an exciting afternoon though. And like Spencer's dad said, "How lucky that you got to do a test run!"
Me and Spencer heading off to the hospital... only to return 2 hours later!

2 More Weeks...

I went in this morning for a growth ultrasound and a normal OB check-up. Max is getting so big! Right now he is measuring just over 7lbs! I still have 2 more weeks to go which means Max has the potential to be over 8 pounds by the time he is born. Yikes!
When I met with the doctor today he felt it was best to have an induction scheduled earlier rather then later. So we set the date- January 12th! If I have not gone into labor naturally before then I will be induced on Monday the 12th. We decided on Monday so that Max and I will have a full staff of doctors available all week since sometimes the staffing on the weekend does not include all the specialist we will need to meet with.
One other side note about my appointment... the technician that performed the ultrasound told me that he has worked with Dr. King (our cardiologist) a lot. He said if he ever had a child with a heart problem he would camp out in front of Dr. King's office to insure that he would be his child's doctor. According to him, Dr. King is the best out there. How reassuring to know that Max will be in such good hands.

Appointment this week...

Everything is looking good! My blood pressure is low and Max's heart rate is strong! Only 3 more weeks!

Sleepless nights...

Last night I couldn't sleep.
My mind was just swirling with thoughts of Max... I can not believe that he will be here in less then a month. I am I ready for another baby? How will this labor and delivery be different from my first? Will he be a good sleeper? What will he smell like? What will it feel like to be in the hospital but have my baby in a separate room? How many tests and exams will he need? Will he have hair? How many different nurses will take care of him? How little will he be? What time of the day will he be born? When visitors come will they be able to see and hold him? Will he have tubes hooked up to him the entire time we are at the hospital? Will I have to listen to him cry from across the room and not be able to hold him? How will Morgen respond to meeting his brother for the first time? Will he be able to breastfeed or will he be on a feeding tube? Will my bond with him happen instantly or will it happen more gradually? Will he look like me or Spencer? How long will he need to stay in the hospital?...
Those are just a few of the millions of questions I have in my head. I did not even want to attempt trying to write out all my questions about when he comes home and when he needs to go back to the hospital for surgery. How I am I suppose to sleep when there are so many unknowns? How do I turn off my worried, mommy mind long enough to relax at night?

Non-stress Test...

From now until Max in born I will be having weekly doctor appointments. At each appointment I will have a non-stress test. Basically I have to sit there for 30 minutes while I am hooked up to monitors that measure Max's heart rate and my contractions. Today everything checked out normal- my body is not under stress and neither is Max. My doctor said that according to the testing performed today I should be on track to carry Max full term and should not need to be induced unless I go past 40 weeks.
Earlier this week I was able to schedule an appointment with the Pediatric Cardiology Case Manager at Emmanuel Hospital. In a week Spencer and I will meet with her and she will take us around the hospital and give us a more in depth tour of the facilities that Max will be using when he is born and when he returns for surgeries. I am anxious to meet with the case manager and ask LOTS of questions.

Blue Baby Syndrome...

One of the main concerns about Max immediately after he is born will be his oxygen saturation levels. Since his heart will be mixing the oxygen rich blood (red blood) and the oxygen low blood (blue blood) that means that blood low in oxygen will be pumped back through his body causing his coloring to be blue. If someone is choking their lips turn blue because they are low on oxygen- essentially the same thing will happen to Max, he won't be choking but the blue coloring will cover his entire body. It is just a temporary condition and most likely he will be put on oxygen tubes immediately so his coloring will be "normal" within a few days. This is just one of the side effects of being born with a congenital heart defect. And really this is the only side effect (that we know of) that is noticeable just by looking at him- otherwise he should look like a regular little baby.
This is an image I found on google.com of a baby that was born with Blue Baby Syndrome.

Our last visit with Dr. King...

Today I had my last appointment with Dr. King, the pediatric cardiologist. Basically everything is the same- which is really good news. Max is growing. He is now a healthy 5lbs 2oz. His heart is continuing to grow proportionate to his body. Dr. King is really happy with the growth of Max and even said that there isn't a need to have a scheduled induction; however, my OB/GYN is still probably going to schedule an induction so that he and the other staff will be prepared.

After our last appointment with Dr. King our concern was that the hole between the ventricles would begin closing- today it was confirmed that the hole is actually growing proportionate to the rest of his heart. We might side step an additional surgery if that hole stays large enough to allow adequate blood flow between the right and left ventricle. I know it sounds strange to hope that a hole in my son's heart will continue to grow larger but Max's heart is pretty unique and the hole is actually helping his body circulate the blood more efficiently.

Another bit of good news- with a single ventricle heart, like Max, there is an increased chance that the pulmonary artery will stretch out causing too much blood to be pumped to the heart. Essentially the heart could flood if the pulmonary artery is stretched too wide. Often a surgery is needed to band the artery to keep it from stretching too much. Today Dr. King said that the circumference of Max's pulmonary artery is at a length that is not too large. So again, we might side step another surgery :) Of course Max's heart can change a lot between now and when he is born but the thought of less surgeries is so encouraging to me.

We will not meet with Dr. King again until this little one arrives. At that point Dr. King will do a thorough examination of Max and will be able to give us a more accurate time table of when (or if) certain surgeries would need to be performed. Dr. King has been so reassuring throughout our visits with him. I feel 100% confident that he will provide the best medical care for our son.

I am only 5 weeks from my due date! I now need to go in for weekly appointments so the doctors can monitor the stress levels of me and Max. I will let everyone know if there are any changes but at this point we are praying that the rest of this pregnancy will non-eventful. Thank you to everyone who has been a source of support through your encouraging words and prayers.

His name...

A lot of people have asked us how we chose the name Max for our little boy. Honestly- it just fit. We had a list of boy names that we were considering but when we heard about his heart condition we both just knew that Max was the perfect name. In fact, Spencer and I were in the room with the doctor and the technician performing the echo cardiogram and we just looked at each other and said almost simultaneously, "He's Max" as we watched his image on the screen.
People who know us closely know that Spencer is a huge BYU fan. This year the BYU football team is doing pretty darn well and a big part of their success is because they have a great quarterback, Max Hall. Some people have asked us if we are naming our Max after Max Hall and the answer is no. So even though our boy will be named Max and shares the name with the current BYU quarterback it is just a coinciedence- but Spencer thinks it is one awesome coincidence! We love our little Max and are big Max Hall fans too (as evident with our t-shirts)!

Hospital Tour...

Tonight Spencer and I were able to take a tour of Legacy Emanuel Hospital. That is the hospital where Max will be born and where his surgeries will be performed. It was a maternity tour so we were able to see the labor and delivery ward as well as the family birthing center which is the recovery area for mom and newborns.
The lady hosting the tour was able to answer all of our questions and it was very reassuring to actually see the rooms that I will be staying in. With all the unknown regarding Max's health after he is born, it was nice to take this tour in order to help me feel more prepared. I was impressed with the labor and delivery rooms- very spacious and comfortable. The recovery rooms were quite small but there isn't much I can do to change that. I had a very positive experience delivering at the Salem Hospital so I hope that Emanuel will be the same.
Since we went on a group tour the information we received was pretty general. We are hoping to schedule a private tour of the Newborn ICU soon and have more specific questions answered regarding Max. It is pretty amazing to think that Max will be here in 2 months! Going on the tour just made things seem more real. I got nervous thinking through the whole labor and delivery process but at the same time I know all those aches and pains will melt away the moment I see Max.

That's my healthy boy...

I had an ultrasound and doctor's appointment today. Max is doing FANTASTIC! He weight is up to 3lbs 6oz which puts him in the 46% on a fetal growth chart! So he is growing and staying strong. What a relief. My doctor reassured me today that since his growth has stayed consistent he should stay on track to make it to a healthy birth weight which means a healthy sized heart!
For most pregnancies you only have 1 ultrasound. I love that I get to see Max so often since I have an ultrasound at every appointment. I am now getting good at being able to see the things the technicians see- it isn't all a blurry picture any more. It is amazing to watch him move around on the monitor. I get to see my baby move his little arms, open and close his mouth and watch his heart beating steadily. My favorite is watching his legs kick while simultaneously feeling those kicks against my tummy. I just love Max so much. It is going to be amazing having him be a part of our family.

Hope...

My mother-in-law gave me this little figurine. It is a perfect reminder of my little Max boy and the hope that we all have for him and his heart. I have the figurine in my kitchen and see it everyday.
I had a sad moment earlier this week regarding Max. We received a phone call from a close friend letting us know that they just had their baby. We of course were thrilled and excited to hear all about the weight, length and how the labor and delivery was. In that moment of happiness for our friends I could not help but feel a bit of sadness knowing that when Max is born there will be such a mix of emotion. Not only will we be filled with joy to have another baby join our family but we will also immediately have to worry. I am not even sure if I will get to hold and cuddle my little boy once he is born- there is the possibility that he will immediately be whisked away for testing. Naturally I want what is best for him and his health but an infant is so delicate and precious and it just breaks my heart to know that Max will have to struggle through procedures and testing rather then being held safely in my arms.
I know there is a reason that Max is being sent to be a part of our family. And I know that I was meant to be his mommy. Sometimes I doubt my strength in being able to care for him and being able to deal with all that surrounds a baby with significant heart problems. But in those moments of doubt I need to hold on to my hope. I can hope for the best. I can hope for strength to come from friends and family when mine is running low. I can hope that Max will be physically strong enough to endure his surgeries. I can hope that the happiness of seeing my little angel will outweigh the stress. I can hope that our prayers will be answered.
I love my Max!

Into the 3rd Trimester...

2/3 of the way down, 1/3 of the way to go!!!
I had 2 appointments this week- 1 with the cardiologist and 1 with my OB/GYN. Overall Max is doing fantastic! He is still growing at a normal rate. He is strong. He is developing just like any other baby should. I am feeling fantastic too! I do get the normal aches and pains of being pregnant but nothing that is too dramatic.
Now that Max is a little bit bigger the cardiologist was able to get a better look at the heart. Dr. King was able to get more accurate measurements and images. From what Dr. King saw there is nothing that is worse then before but there are some differences that he did not see the first time he looked at Max's heart.
Originally, we were told that both the pulmonary artery and aorta were connected to the left ventricle. This time, the doctor was able to determine that the pulmonary artery still is connected to the left ventricle and the aorta is in fact connected to the right ventricle. This is called Transposition of the Great Arteries because normally the pulmonary artery is connected to the right ventricle, not the left, and the aorta is connected to the left ventricle, not the right. Remember that Max's right ventricle is significantly smaller and considered "non-functioning." So how can his heart work if the aorta is connected to a "non-functioning" ventricle? Well let me see if I can explain...
I am a visual person so I drew some pictures to help me think through the function of the heart. Hopefully my pictures will make sense to you too. Also, a quick reminder... blue blood is low in oxygen and red blood is high in oxygen.
This is the basics of a normal heart:
Blue blood enters the heart through the Right Atrium (RA), pumps to the Right Ventricle (RV), then leaves through the Pulmonary Artery to the lungs. After filtering through the lungs the blood is now high in oxygen, or red blood. Red blood then pumps from the lungs, through the pulmonary vein to the Left Atrium (LA), pumps to the Left Ventricle (LV), and then leaves through the Aorta to the body.
Make sense? Okay now try to understand little Max's heart. It is a little more complicated...
Blue blood enters Max's heart through the Right Atrium (RA) and red blood enters Max's heart from the lungs into his Left Atrium (LA). Max has a hole between the Right and Left Atrium so the red and blue blood mixes. Also, he has a hole between the Right Ventricle and the Left Ventricle so the blood again is being mixed. That means is that both blue and red blood is being recirculated to his body so the blood flowing throughout Max is at a lower level of oxygen then it should be.
Now adding on to that is the fact that Max's Right Ventricle is "non-functioning." The only way that blood has momentum to flow out from the Aorta to his body is through the hole between the Right and Left Ventricle. Since the Right Ventricle does not work independently, the hole is actually necessary so blood can flow from the Left Ventricle, through the hole, and out the Aorta to the body.
Dr. King took very careful measurements of the hole between the Right and Left Ventricle (the technical term for the hole is VSD). Often times the holes in the heart can close up or become more narrow- we do not want that to happen. We want the hole to be as big as possible to encourage more blood flow from the Left Ventricle, to the Right Ventricle and out the Aorta. If the hole closes then there will not be a way for blood to flow out the Aorta which would cut off the blood supply to his body.
I don't know if any of that was clear. I am not a doctor and I may be inaccurate with some of my descriptions but overall the doctor said that Max is doing just as great as before. Good news!!! More specifics regarding what surgeries are needed and when those surgeries will take place will have to wait until after Max is born. There is just no accurate way to determine how Max's heart will function independent from my body at this point. We just have to keep an optomistic attitude and prepare as much as possible for whatever surgeries and healthy issues await Max. We know that it is not possible for Max's heart to magically be perfect by the time he is born but right now we are praying for the hole between his ventricles to not get smaller. We can hope for one little miracle right?

100 days to go...

According to my due date, I have 100 days until Max should be here! With Morgen I was a week late but we'll see what happens with round two.
Here is an updated belly picture (sorry it is blurry). It is hard to not complain about getting big but with Max the doctors remind me that a big tummy equals a big, healthy baby!
Morgen is super good at giving snuggles. I love this picture because his hand is resting on my tummy. He loves to pat and kiss my tummy.

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

Ultrasound Pictures...

Here are pictures from our first ultrasound of Max. This is his perfect profile, button nose and all. The tube laying against his stomach is the cord and you can also see his spine.Here is a picture of his rib cage and legs. He is actually mid-kick in this image and you can see both of his little feet pushing against the side of my tummy. The straight, white line along the bottom is his arm.

10 perfect little toes on 2 perfect little feet.