Friday, February 24, 2012


These are some pictures from the growth ultrasound we just had, at 26 weeks.  Will was being super cute --  playing with his feet, sucking his thumb, practicing breathing, and stretching out his hands.  When the ultrasound tech started taking pictures to print, Will grabbed his foot, turned toward us and smiled.  It was like he was saying "mommy, look what I can do!"
He is around 2 1/2 pounds, which is the 69th percentile (he is big!!).  Everything is looking and measuring really good.  It was fun to get to see him having a good time!

At the top, his foot is on the left, and he is grabbing it with his little hand.  On the bottom right is his face and sweet little smile.

Jazz hands!

Sunday, February 19, 2012

Brief update

   Thankfully, we have nothing but good news here.  After a few more appointments, we have just a few more things to report. 
    Will's birth will be scheduled between May 21st-24th.  I will go in the night before, and they will try to get things moving.  Their goal is to have him arrive at a time when Children's hospital is fully staffed, which is why we have it narrowed down.  They want him to be born at 39 weeks, during the day, Monday through Thursday.  We will schedule his exact day around 34 weeks once we get a better idea of how things are going.  At this point we are not expecting a C-section!
   After he is born, assuming he is stable, we will get a short period to spend with him.  Within two hours he will be put in an ambulance to head over to Children's.  Jared will get to go with him (again, assuming he is stable).  I am trying to accept the fact that I will not be allowed to go.  Dr. Habli (the perinatologist) said that she expects everything to be somewhat "normal" immediately following his birth.  By that I mean no immediate complications.  She has delivered many HLHS babies, and said usually the only concern at the point which she is involved, is that HLHS babies tend to be a little small.  They will monitor his growth to the best of their ability up until he is born. Otherwise everything involving his birth is expected to be fairly "routine," considering the circumstances.  My parents and I liked Dr. Habli a lot.  She has a very positive outlook, as did all the cardiologists at Children's.  We feel very lucky to have such a good team on our side. 
   We still feel like a lot is up in the air at this point, but we are becoming more and more prepared by the day.  I think Jared will agree with me when I say that I am now just very anxious and excited to meet our little boy.  A lot of the fear and "dread" that I was feeling regarding his condition has gone away now that we have more information and some good doctors who truly believe our little boy is going to be okay.  I have definitely come to feel very blessed by William, because I know that he was meant to be my child and things were meant to be this way.  We are learning so much and I just realize how much more appreciative we are now of all the little things.  I will admit we have found so many positives that I never expected in a situation like this.  Of course, we would rather his heart be whole, but a lot of good is coming from this little boy.  He is ready to inspire the world with his strength and his smile.  I can't imagine my life being any other way already, and he is not even here yet.
   Besides my routine care, our next step is another echocardiogram.  This is expected to be the last one before he is born.  I am hoping nothing has changed (unless for the better of course).  This will be mid-March, and we will be meeting with the surgeon this day as well.  His name is Dr. Manning and we have heard good things about him.  I am sure I will have another update after that.
  Thank you all for your continuing prayers and thoughts for Will.  He has all the heart he needs, because he has ours as well.  What a very lucky boy.

Friday, February 3, 2012

Reconstructive Surgeries Part 2

For some reason I was having serious formatting issues, so here are just a few more facts regarding the surgeries that I have learned through my research so far:

 -When a baby is born, their heart is about the size of a strawberry.
-Before the first surgery, medicine is given through an IV to keep certain parts of his heart open, which would otherwise close within hours of birth.
-The Norwood is considered one of the most complex and difficult pediatric surgeries.
-Recovery time for the Norwood is at least a month.
-The few months between the Norwood and the Glenn are considered the most difficult months of life for an HLHS baby.
-The Glenn has a much quicker recovery time in general compared to the Norwood; usually about a week.  Also, things are said to be easier for an HLHS baby post-Glenn.
-Following the third surgery, Will is expected to have a very good quality of life, and probably will have little to no memory of the stress and pain of his early childhood.

The Three-Stage Reconstructive Surgeries

Here is a summary of the surgeries Will is going to have performed... I have added the ages the cardiologist provided me, otherwise the information is all pulled from the University of California, San Francisco website.

Norwood Procedure (Within 10 days of birth)This procedure is performed shortly after birth. It converts the right ventricle into the main ventricle pumping blood to both the lungs and the body. The main pulmonary artery and the aorta are connected and the main pulmonary artery is cut off from the two branching pulmonary arteries that direct blood to each side of the lungs. Instead, a connection called a shunt is placed between the pulmonary arteries and the aorta to supply blood to the lungs.

Bi-directional Glenn Operation (Approximately 4-6 months)This operation usually is performed about six months after the Norwood to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.

Fontan Operation (Approximately 3-4 years)This is the third stage, usually performed about 18 to 36 months after the Glenn. It connects the inferior vena cava, the blood vessel that drains deoxygenated blood from the lower part of the body into the heart, to the pulmonary artery by creating a channel through or just outside the heart to direct blood to the pulmonary artery. At this stage, all deoxygenated blood flows passively through the lungs.

Thursday, February 2, 2012


Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.
-Maya Angelou