So, I made an observation of myself when I was in college.  Right before a semester started, I would organize all my books and such to make sure I had it all together.  One thing I liked to do was go over my class syllabi and find out what I would be doing over the next semester.  I would note every test, every project, every quiz, every assignment...and I would find it all very overwhelming.  Sometimes, I would find myself asking, "How in the world will I ever get all of this done?  There is no physical way I can do it all!!"

Then, the semester would start.  Day by day, week by week, the assignments would get completed, the tests would get taken, the projects would get done.  I would find myself at the end of the semester and I would look back and be amazing at what you can do when you take it one step at a time.

As I come to the last few weeks of my pregnancy (um...make that two and a half, for those of you counting), I find myself, once again, in that panic mode of pre-semester college days.  How in the world am I ever going to be able to do this?  How will I be able to watch my child go through all that he is going to have to go through?  How will I take care of my first boy?  How will I possibly understand all the medical terms I am going to have to learn? How can I emotionally handle it all?

While it is true that the time we will be dealing with this is not just a 4-month semester...but really a lifetime of care for this little one...I find comfort in knowing that I will only have to take it one day at a time.  I know that some days I will have to deal with more than another day.  The first few weeks and months and even the first year or two, will probably be harder than the once proceeding those.  However, I will be able to take it one day at a time.  How wonderful a thought that is.

Now...can we just make it happen yet?  I would really like to stop thinking and start doing (I think...)

Well, we are done with cardiology appointments until this little man makes his appearance (which is in 5 weeks, for those of you who are counting!).  Now, we are working more closely with the Perinatologists (the doctors who will actually do the delivery) and my regular OB appointments. 

One thing we have started doing are weekly Non-Stress Tests (NST).  Each week, I go in for about 20-30 minutes and they monitor the heart heart and movement of the baby to make sure everything is still looking good.  This gives them an idea of whether or not we will need to move up the delivery because of stress on the baby.  Fortunately, our little man has been perfect so far!  If it wasn't for his heart, he would extremely healthy.  His heart rate is always great, he moves more than any human ever has...EVER, and all his measurements come back normal.  In my mind, this just shows me that he is going to have the strength to get through what is definitely going to be a long road for him.

Now, in other news...the waiting game.  I have to say, my attitude at this stage of pregnancy this time around is very different than last time.  With Logan, I was so ready to have him out!  I was extremely uncomfortable and 5-6 weeks sounded like such a long time!  Now, I am not going to say that I am not uncomfortable this time...I think I am more uncomfortable with this pregnancy (Insomnia and my psoriasis have definitely made it more difficult!), but 5 weeks just does NOT seem like that long!  When I think about the journey that we are going to begin once he is here, I just can't seem to grasp that it is going to begin in just a matter of 5 weeks.  This is crazy!!

The final and probably most enlightening part of the appointment was our visit with the Fetal Heart Coordinator and our tour of the facilities.  This was the part that really opened our eyes to what it will be like and what we can expect.

We started out staying in the same room we met with the cardiologist and met with Kim, the Fetal Heart Coordinator.  Her job is to help us with the logistics of things...where will our baby be a lot, what will the first week be like, what are our lodging options, what are the rules of the hospital, where do we eat, what resources are available to us.  We went over a lot of different things with her in that room, but most of our questions were answered during the tour.

We started out in the Cardiac ICU of Primary Children's...yes, you read that right...they have an entire ICU dedicated just to the cardiac patients.  While there were mostly babies, we saw a number of older kids as well.  I think this will be very helpful, especially meeting other people in our situation.

Probably one of the most eye-opening experience was seeing a little baby who had just come out of heart surgery.  She was tiny, even for a normal baby.  But she looked even more tiny being hooked up to all the tubes, IVs, and monitors.  This little person had so much equipment around her it was very overwhelming.  My thought was, "No wonder you are not allowed to hold them! I wouldn't even know how to pick them up!!"  It was hard to think about our little baby in that position.  One thing Tim and I talked about was how difficult is was when Logan had to be on oxygen for those two days in the hospital and how helpless we felt.  We can only imagine those feelings will be exponentially bigger, since there will be so much less we will be able to do and for much longer. The reality of how serious these conditions are reached the surface for both of us.

However, there were some very encouraging things to me.  One thing that was wonderful to me is that there is one-on-one nursing in the ICU.  I think it will be so nice to have just a handful of nurses that we will be working with over our time there.  I am sure these will be relationships we will come to treasure and they will be a blessing throughout the ordeal. Also, I was encouraged at how confident they seemed in knowing how to handle these difficult situations.  While this is our first time going through this (and hopefully our last!!), I am so grateful that we will be surrounded by people that know what they are doing.  Once again, the Lord has put us where we need to be and surrounding us with the people we need to be with.

Next, we went to the "third floor," or the floor we would go once the baby does not need ICU care, but still needs to be in the hospital.  Apparently, they need to be off certain medications, have certain stats, etc. in order to be off the ICU.  Mostly, cardiac babies spend time on the third floor learning how to eat on their own.  When they go into surgery, they are given a feeding tube once their system can handle food.  Because of this, they do not have the skills to eat normally, so we have to take special care to teach them how.  They will not be able to leave the hospital until they can handle food on their own, whether that is orally or through a tube.  This, along with other issues, will be what we deal with on the third floor :)

Finally, we jumped over to the University of Utah hospital, where I will deliver this sweet little guy.  Primary Children's and University Hospital are two different hospitals, but they work very closely together and they are connected by a sky walk. You can get from one to the other in a matter of minutes.  I was very impressed with the Labor and Delivery.  They have a Newborn ICU right there.  In fact, one room (most likely the room I will deliver in)  is connected to the ICU with a little window (thing McDonald's drive through...I think it is the same type of window!!).  Once the baby is born, they can hand the baby through the window directly into the ICU, where they can stabilize him, clean him off, and prepare him for the short trip over to Primary Children's.

It usually takes them a few hours to get him ready, but once he is, they will get the life flight transport team to wheel him across the sky walk to the cardiac ICU.  Also, they are very accommodating to letting me go over to see him as much as I want, even though I will have just given birth.

Overall, it was very good for us to get a visual of where we will be dealing with everything.  Once again, I can't say enough how grateful we are to live so close to such an amazing facility.  Although we know it will be difficult, we know that the Lord has His hand in all of it. 

This section will be a little shorter, but I thought it was really interesting and I wanted to make note of it.  After we spoke with the cardiologist, a very nice lady came into the room to talk to us about being a part of a genetics study.  Basically, they are finding over 4,000 participants with congenital heart defects and studying their DNA to see if there is any genetic link to why they have it.  They will take blood samples from both me and Tim, and they will also use the blood from the umbilical cord for the baby (so they don't have to poke him again...since that will happen more than we want anyway).

This was another one of those "wow" moments for me...that we are going to have a baby where people want to use his condition to improve the medical community.  Apparently, we are going to be approached a lot to be part of different studies and it is just crazy to think about.  It will be interesting to be a part of, that is for sure. 

So, as you all know, we had a very big appointment last week with the cardiologist/case worker at Primary Children's Medical Center (PCMC) and the University of Utah hospitals. All in all, it was a very good appointment, although it was a big eye opener to what we are going to be dealing with in the time to come.  I have decided to break up the appointment into three different parts (since we were there for over 3 hours and it was a LOT of information!)

The very first thing we did was a fetal echo-cardiogram.  This is the test they have done at every cardiology appointment we have.  Basically, it feels just like a regular ultrasound, but they take very specific measurements in the the heart, including pressures blood flow, and all sorts of other things.  They also look over the vessels around the heart.  I watched closely this time and they took over 100 pictures of the heart! (It is crazy to think about all the pictures this little guy has of his heart in his digital medical chart already and he is not even born yet!)  This test takes about 45 minutes to complete. 

Once we had the test done, they took us into a consultation room where we meet one on one with the cardiologist.  This time, we met with one of the other 4 fetal cardiologists at the hospital.  Her name was Dr. Pinto.  We were very impressed with her.  The results of the test were good...they didn't find anything else wrong.  I have to tell you, after a few of these appointments, I have started to feel some real anxiety about what they are going to find and what news they are going to tell us.  If they couldn't tell us that things are looking better and that some of the issues had gone away, I was just fine knowing that I didn't have to process some other complication to this already very complicated situation.  First anxiety issue over come.

Although we did not find anything new, I felt it was really good for us to get another cardiologists perspective on things.  The first cardiologist we have been seeing (Dr. Su) is absolutely wonderful, but I always felt he was being a little too optimistic.  We left the last appointment with him with real hope that we might not have to deal with surgery right away.  After our visit with Dr. Pinto, we are preparing for surgery.  There are just too many variables that have to go our way to avoid surgery.  While this may seem like a downside, I am actually very grateful for the realistic perspective and I will work much harder in the future to make sure I know exactly what they are thinking so I can prepare properly.  Just give me the facts so I know!  I am learning very quickly how to ask questions and understand as much as possible.

Another thing I want to say here is how grateful I am for the medical staff and team that will be working on our baby.  Like I said, there are 4 fetal cardiologists, however, there are over 25 pediatric cardiologists at Primary Children's!  Not to mention all the nurses, staff, and others who spend their whole life working with children with heart issues.  I feel so blessed that the Lord has put us in a position to be close to these specialists.  Just one of the many blessings we have seen throughout this whole thing! 

I know I already posted today, but I wanted to write down what the findings were at our last appointments, even though it has been over a month since those happened.  We have another cardiology appointment on Friday and I want to make sure I remember where we were at before that.

1) AV-Canal Defect:  This is still the case.  However, because of the under-developed Right Ventricle, we probably won't be doing surgery for this.

2) Under-developed Right Ventricle:  This was the big find at the last appointment.  The right ventricle, which is the one that pumps blood from the heart to the lungs, is not going to be strong.  Because of this, little man will goes through a series of surgeries to bypass the ventricle completely and divert the blood directly into the lungs.  Normally, this is done with three different surgeries, but it is looking like we may be able to skip the first one and make the second one his first surgery.  This would be done when he is 4-6 months old.  This is really exciting news because the first surgery would normally be done pretty quickly, which makes some of his developmental milestone difficult to reach.  The longer we can wait for surgery, the better.

3) Missing Main Pulmonary Artery:  Honestly, this in one that I don't understand completely and I am hoping to after this next appointment.  From what I can understand, the pulmonary artery takes the blood from the heart to the lungs. With our little guy, it looks like the aorta (which takes blood from the heart to the rest of the body) actually has an artery coming off of it that looks like it goes to the lungs.  Obviously, if blood is not getting to the lungs, this is a VERY serious thing.  It will be one of the very first things they check to make sure there is blood flow to the lungs.

4) The 4 Pulmonary Veins:  When the blood comes back to the heart from the lungs, it does so through 4 veins (called the pulmonary veins).  In our little man, it looks like they are all there, but the veins are longer and taking a "weird" route back to the heart.  This can be a problem for several reasons, including a) more space for blockage and kinking.  b) underdevelopment, which decreases blood flow.  I know there are more, but I can't remember right now.

5) Heterotaxy:  This is the issue of organs being backwards and/or on the wrong side of the body.  From what we know now, little man's heart is flipped (so the heart is pointing to the wrong side of the body...the left side is on the right and the right side is on the left).  Also, we know that his stomach is on the wrong side.  These two things can be indicators that other organs in the body could be mixed up. Some of the common ones they have talked with us about are a) missing or multiple spleens and b) issues with the intestines.  The spleen plays a key role in children in the development of their immune system.  While adults don't really need them, children who are born without one can suffer from very low immunity.  The intestines can have issues like being twisted, kinked, and knotted.  They will do a test before anything is fed to little man to make sure everything with the intestines is alright.

Needless to say, there are a LOT of issues...and most likely, I forgot something.  Hopefully, I will continue to improve my understanding at this next appointment this week. :)

Well, today I am 31 weeks pregnant and I am sitting in my living room while my son takes his nap.  I am caught up on my house work and I have worked on my business a little.  I find myself puttering around looking for things to do.  So, I am just thinking and pondering, which can be a little bit scary when you are in my position.

Our next cardiology appointment is this week.  Once again, I am anxious to get it done.  Two different strands of thoughts run through my head: 1) This is going to be so awesome because we are going to learn so much more and be able to prepare better.  We will be taking a tour of Primary Children's and the University hospital, so we will have a visual of things.  Also, we will be meeting with Kim (the care coordinator) who will be able to answer a lot of the questions we have been trying to figure out.  2) What new surprises are they going to find this time that we will need to prepare for?  Last time, it was the right ventricle that was not growing.  While this wasn't as hard to deal with as the first appointment, it still changed our whole game plan and everything we had tried to plan before went out the window.  Is that going to happen again?  Will it be good news or bad news?  Am I emotionally prepared for whatever comes?

As I sit here and ponder some more, I can't help but think about the life my new little boy is going to have.  Will he be able to do all the things he wants to?  I watch my older son run around the park, go down the slides, jump up and down...will the next be able to do those things?  Will my husband and I know how best to help him? On top of all of that, how will my older son be affected by all of this?

I have to admit, I don't usually let these questions linger for too long.  Why?  Because I don't have the answers and it just makes things hard.  What do I try to focus on?  The fact that my Heavenly Father is in charge.  In reality, can any of us really know what to expect in our life? No.  But our Heavenly Father does and He knows what we need to become the person we were meant to become.  I have already seen this.  Heavenly Father is molding me and my family into better people.  We are seeing a whole new world and having experiences we never would have any other way.  I can only imagine that this will continue once this little man comes around.

Yes, the waiting game is hard.  Yes, not knowing what is to come is hard, too.  But I am so grateful that I know of my Heavenly Father and I constantly pray that He will give us the strength to come through whatever we need. 

So, we have our next appointments with the specialists coming up this week and next.  I have been fortunate to have lots going on this month to keep my mind off of things...as much as I can.  However, as the next round of appointments loom, I can't help but start to feel some anxiety.  Last time we met with the cardiologist, we were expecting to get lots of answers to questions...instead, we got more bad news and another round of waiting games.  I am trying to prep myself for the emotions that are sure to come, but I don't know how.

The only thing that keeps me calm is my Heavenly Father and knowing I have an amazing husband who will be going through it all with me.  I have such a peace in my heart knowing that my Heavenly Father is in charge...whatever happens is his will and is what is meant to be.  Even though this fact doesn't make going through this easy, it does make it easier.  I can't imagine how difficult it would be if I had to ponder why this was happening or what we did to deserve this.  We are going though this because it is what Heavenly Father has planned for us...and he truly has our best interest at heart.

Over the past month, I have made it a priority to work on my spiritual growth.  I know that the near future will test everything and I want to be as strong as possible.  I feel closer to my God then I ever have before and I know he is going to lift us through the difficult times.  I pray I will grow the way He wants me to and that He will be there this week as we go to our appointments. 

The first few days after finding out about our little guy's heart problems, I went through a lot of different emotions.  One thing that really struck me was a feeling of loss...which confused me because I couldn't think what it was I was grieving the loss of.  Then, one day, I was thinking about getting out some of Logan's old baby clothes and getting them ready...I realized I didn't know what kind of clothes to get out.  If my baby was going to be in the hospital for a month, would regular onesies work?  I suddenly broke into tears again as I realized our experience with this baby would be nothing like a normal baby experience.  That is what I was mourning...the loss of that normal experience.  I probably won't be bringing baby home with me from the hospital when I leave.  I probably won't be able to nurse him within the first few hours he is here.  I probably won't be able to have him in my hospital room the first night.  Things will be different...and that has been a tough one for me to swallow.

After our first cardiology appointment, our doctor handed us a folder full of helpful information...support groups, lists of people we may want to talk to, etc.  In that folder, this poem was included.  As I read the words, I was so thrilled to find that someone had figured out how to explain my feelings so perfectly!  This is what it feels like...and why I have been struggling with mourning a loss.  I know I will love my baby more than anything, but I am glad I have a few months to be sad that things won't be what I was expecting.

Welcome to Holland
by: Emily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tomorrow is our first appointment with a cardiologist.  We are expecting to get a lot of answers to how our life will be for the first little while after baby comes. 

I am sort of having mixed emotions tonight about tomorrow.  One one hand, I am excited to get my questions answered and know enough to start making the necessary plans.  On the other hand, I am feeling overwhelmed.  I guess I will just be glad to have it over with so we can move on to the next part.  Waiting really is the hardest.

It is hard to put into words what I have been feeling the last week and a half or so.  On July 25, 2012, we were expecting the fun half-way-point pregnancy ultrasound that everyone gets.  We were going to find out the gender and start getting even more excited about the new addition to our family.  Although it was very fun to find out he is a boy and to see him moving around, we also found out that our little guy has some pretty serious heart problems.

That first 24 hours went by with a lot of tears.  I think both of us were in shock.  We have a few friends that have dealt with children with heart problems and we knew, to some extent, what that can mean.  It was an experience we never expected to happen to our little family.  I remember walking out to the car with Tim after the ultrasound and both of us just cried.  After a few minutes, Tim looked at me and asked, "What do we do now?"  I shook my head and said, "I guess we just go home."  It seemed so crazy to think we could just get back to normal life after hearing this news.

Probably the hardest thing to do was calling our mothers.  Somehow, saying the words to those we loved made it more real...and more difficult.  Fortunately, our mothers were wonderful enough to call each of our siblings and tell them for us.  It was so much easier for them to just know then to have to tell them.  However, once they knew, I think both Tim and I started to feel the prayers and love from each one of them.

This was probably the first time I have ever experienced "feeling the prayers" of others, at least to this extent.  Literally over night, I went from so sad and almost hopeless, to finding peace and the courage to simply stand up and do what we needed to to.  Just the next day, I was ready to see the specialists and start the process of learning everything we could about baby's heart condition so we could make the necessary plans to help him.   I have been at such peace ever since that day.  How wonderful it has been to realize that the Lord really does not give us more than we can handle and helps us through our more difficult times.

I'm not going to lie, though.  I have still had moments (and days) where tears and grief are at the surface.  I have tried to think about how others could relate to my feelings and the only thing I can seem to relate what I have been feeling is the grief cycle.  I started out in denial...days where I would wake up and think that the first ultrasound was just a dream.   Everything is fine and none of that terrible news really happened.  Then, there are moments of just sadness.  Sadness for the baby inside and what he is going to have to deal with and also sadness at the loss of the normal experience of a healthy baby.  There have also been moments of asking why, but I am grateful for the knowledge of the gospel so I don't need to dwell on this fact.  Mostly, I am grateful that Heavenly Father has helped me come to the acceptance stage quickly.  I know that it has been his spirit of peace that has helped me to this point.

Although I know that journey with this little guy will probably not be the easiest, I am so grateful for this opportunity.  I know that Heavenly Father does not send these spirits to just anyone to take care of.  What a wonderful and terrifying experience it will be.  I also know that my emotions have more of a roller coaster to ride, I know that it will be much easier with my Heavenly Father on my side.