Weekly Check

Today I went to my OB for my regular weekly check and ultrasound.  The good news is there is nothing much to report :)  The baby passed all the tests for movement, heartbeat, practice breathing and there is plenty of fluid.  I got to see his little face again and it was looking rather squished.  So as of tomorrow I have 3 weeks left until my due date.  We do not have any further follow up with the specialists; they like us are just awaiting labor.  Matt & I will tour the hospital next week to check out the labor & delivery rooms and fill out all the paperwork ahead of time.  In the meantime, I have a list that keeps growing of things to take care of in the next couple of weeks, most of which are not fun like phone calls to insurance companies and updating my calendar with dates all my bills are due :(  But, most of my time I am spending arranging play dates for Rylie and spending some precious time with her.  She is such a great reminder of how blessed we already are and how much we have to be thankful for.

Meeting the Surgeon

Matt & I have been anxiously awaiting today's big appointment with the surgeon for weeks.  I came prepared with a list of 20 questions and had every hope that the meeting would give us the detailed information we were lacking and help us prepare for what's to come. To be honest, what I got was the exact opposite.  I left with even more questions, uncertainty, and feeling totally overwhelmed with what we are about to face.
The surgeon was great and explained all the possibilities very well, but the reality is that they really won't know what procedure is needed and the extent of the defects until they actually get inside the baby's heart.  He also talked about the recovery and how the baby would be on a ventilator and high levels of medication for days after the surgery.  This was the most upsetting to me.  For some reason, I had never thought about he extent of intervention needed post surgery and am highly bothered by the image of my little man laying there medicated and not breathing on his own.  This somehow really solidified the seriousness of what we are facing.
All in all, it was a good appointment.  The facility is very nice and the staff were all very welcoming and helpful.  Now we just wait & wait some more.  For the next 3-6 weeks I'm going to try to enjoy my pregnancy and time with Rylie.  I will keep posting updates as they come, but again we really won't know what we are dealing with until post delivery.  So for now keep praying for a smooth natural delivery and a stable and strong little boy.

Picture of a Broken Heart

So thanks to my friend Miranda, I now have a great diagram of what a typical heart looks like (image 1) .  In this diagram you will see how the Pulmonary Artery connects to the right ventricle and the aorta connects to the left ventricle.  You will also see the septum separating the two ventricles.

This next diagram is my artistic depiction of the defects that the baby has.  The red portion shows how the Pulmonary vessel is connected to both the right and the left ventricles.  The purple show that the aorta is connected to the right ventricle (opposite of what it should be) and that it is significantly narrowed.  The brown spot represents the hole in the septum between the two ventricles.  For now, the hole is a good thing because it is allowing the heart to self-correct the flow of the blood to the body.  I hope this helps all of you visualize what is different.  I know it helped me :)

The Big Fat Let Down

So today was our "big" appointment at Rady's for the repeat echo to confirm the diagnosis as well as meet the surgeon.  Matt and I have been compiling an extensive list of questions and both spent the day nervously awaiting this appointment.  Well, much to our dismay after the echo we found out that we were not meeting the surgeon today and would have to set up another appointment for that.  We are both feeling very frustrated with this for several reasons including the hassle of going down there and finding care for Rylie as well as waiting who knows how long to get the information that we really want to hear.  In terms of the echo, no new information was given today.  They confirmed the diagnosis and the plan continues as is.  I guess today is just another one of God's many lessons for me through all of this.  Today's lesson: worrying is such a waist of time and energy!  I hate to admit that He has been trying to teach me this lesson for many years.  I'm getting better as I get older at least :)

Potty Training Has Begun

Well, I planned on posting something last night after the first day of potty training with Rylie, but I was sooo exhausted that I went straight to bed.  I felt like I had been run over by a truck.  I guess lifting a 23 pound toddler on and off the toilet 50+ times and sitting on the bathroom floor for hours on end takes its toll on a 34 weeks pregnant body.  Who knew :)  Yesterday morning was rough, but like any good behavior analyst I tweaked my plan after nap and presto, SUCCESS!!  Today was amazing.  Rylie only had 1 accident and she actually pooped in the toilet twice.  I'm sure that is TMI for some people, but I can't tell you how proud I am.  As a parent you have to sit back and laugh about the things in your day that are truly monumental, like a poop in the toilet :)  Hopefully tomorrow goes even better than today.  At this rate, Rylie will be an old pro before the baby comes.  The next hurdle is finding a fold up potty seat to fit in the diaper bag since Rylie is so tiny & eventually will have to go when we are out and about.  Let the internet search begin!

Weekly Check-Up

Today we went in for my weekly check up with my OB.  I am now 34 weeks and will be checked every week including an ultrasound to make sure that everything is progressing well.  Matt went with me to this appointment, but unfortunately Rylie was not being very cooperative, so he had to take her outside and missed the ultrasound :(  Everything with the ultrasound looked good in terms of amniotic fluid levels and growth.  The baby is measuring a little over 5 pounds and in the 80th percentile.  So we are estimating around 8.5 pounds at birth.  I got to see the baby practice breathing on the ultrasound.  It was amazing watching his little chest rise and fall in preparation for those first breaths he will soon take.
The next big appointment will be next Thursday afternoon when we will have a repeat fetal echo and meet with the surgeon.  Matt and I already have a long list of questions for the surgeon and I'm sure will think of more as we get closer to that appointment.
On a different note, today was my last day at work.  To keep myself occupied I have decided to potty train Rylie before the baby comes.  We start tomorrow, so wish us luck :)

The Details

I realized after I made my first post that there may be some of you reading this that didn't receive the whole story about what exactly is going on with the baby.  When I had my 20 week ultrasound, the ultrasound tech noticed that the baby's aorta was slightly enlarged.  We had a few more ultrasounds and the same results were found, a slight enlargement; however, we were told that everything seemed to be fine.  Last week we saw a pediatric cardiologist and had a fetal echo.  Much to our surprise, Matt & I were told that things were far from fine.  We learned that the baby has 4 different heart defects, and that in a nutshell the great vessels of the heart are backwards and that both are connected to one ventricle.  We are still in the process of learning what this all means, but we do know that the baby will have open heart surgery within 48 hours of birth and will be in the NICU for several weeks.  Aside from that, we won't know the full picture until the baby is actually born.  We have a follow up echo next week and a meeting with the surgical team, which I'm sure will shed a little more light on the situation.  The good news is that I am healthy and until the baby is born, he is safe.

Let the Blogging Begin!

Well, as you all know Matt & I are entering into uncharted territory with the news of our little boy's heart trouble.  We have spent the last week coming to terms with what's to come and going through the many emotions that such unexpected news will elicit.  Each day brings a deeper level of acceptance as well as 100 more questions.  For the next 5-8 weeks, we will have several appointments and be gathering a lot more information.  I want to keep all my friends and family up to date with our journey and thought that this would be the perfect way to do it.  That way, I don't forget to call or e-mail one of you by mistake :)  So, I am venturing into new territory and starting this blog.  I hope that all of you will find it useful in keeping up with our family.  Please feel free to share with other friends and family that my be interested in keeping up to date with the process.  For now we will most likely have updates weekly, but once the baby is born I'm sure they will be daily.