Saturday, February 23, 2013

You're worth every falling tear...

This song was written by a father whose son was diagnosed with HLHS (another single ventricle heart defect) and hit home when I heard it with it's description of how I am currently feeling.  I'd keep the tissues handy if you listen to the whole song.


Afraid to love
Something that could break
Could I move on
If you were torn away?
And I'm so close to what I can't control
I can't give you half my heart
And pray He makes you whole


You're gonna have all of me 
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start






Baby Shower!


Ever since I reached week 20 of this pregnancy, there has been very little normalcy involved.   I find myself often comparing my first pregnancy with Georgia, and how simple it was, to how complicated and heart breaking this pregnancy is.  Today I got to experience a few hours of a very normal experience - a baby shower with my circle of play group Moms.  Even though I've been down and out with a cold the past couple of days, it was so nice to put the sickness, worries and tears aside to just share some time with other mothers.  And the baby clothes - boy clothing is so very different from girl clothing :)


So right now I feel like saying Thank you to my sister and all the other playgroup Moms for planning this afternoon for me and Jacob.  It was so nice to feel almost completely normal for a few hours!

Wednesday, February 20, 2013

Complete Heart Block

At our routine 2 week ultrasound with Maternal Fetal Assessment Unit (MFAU) yesterday we found out that Baby Jacob has developed another heart condition called Complete Heart Block.  I've taken the description of CHB or Third Degree Heart Block from another site (http://www.cincinnatichildrens.org/service/f/fetal-care/conditions/heart-block/) to explain:


Complete heart block is a disorder of the heart’s electrical system, which controls the rate and rhythm of heartbeats. Heart block occurs when there is a disruption, preventing the electrical signal from the upper chambers of the heart (the atria) from reaching the lower chambers (the ventricles).
Normally, the electrical signal passes through specialized conducting tissue known as the atrioventricular (AV) node. After the signal passes through the AV node and reaches the ventricles, it causes the heart to contract and pump blood. When this signal does not transmit properly, there is heart block or AV block. This does not mean that the flow of blood in the heart or that the blood vessels of the heart are blocked. It does mean that the electrical signal that spreads across the heart with each heartbeat is slowed or in some cases completely interrupted. This can limit the ability of the heart to pump blood to the rest of the body.

There are three types of heart block, depending on the extent of disruption of the electrical impulses: first degree, second degree, and third degree. Also known as complete heart block, third degree is the most severe and represents complete interruption of electrical communication between the atria and ventricles.

While all forms of heart block, including complete heart block, more commonly occur after birth, some babies are born with heart block. This is known as congenital and can be detected before or after a baby is born.

So essentially what is happening is the top chambers of Jacob's heart are beating strong and normally, but no communication is reaching the bottom half to tell it when to beat.  Because of this Jacob now has two heart rates - Higher Chamber and Lower Chamber.  His lower chamber is currently in the 80 beats per minute range.  If it goes down to 60 or lower than than the risk of heart failure and/or fluid build-up in his lungs or heart is very high.  Right now the middle node of Jacob's heart is regulating the bottom chambers at it's own rhythm, and if this node fails than the time between failure and likelihood of fatality is short.

So overall, what this means right now is that I will be having 3 MFAU ultrasounds a week to closely monitor the heart rhythm and fluid build-up.  If his lower chamber heart rate drops to 60 I will be sent immediately to TO in an air ambulance for his delivery, or potentially will deliver here if  the doctor's don't think there is time to get us to TO safely.  It also means that my pregnancy is now high risk, and it may be safer for Jacob to be delivered early than for him to stay inside.  This creates further complication for the first surgery, as the smaller Jacob is the higher the risk is.  The first surgery will now be two surgeries in one - the DILV surgery and placement of a pacemaker to regulate the lower chambers of the heart.  I received the first of two steroid shots yesterday to help Jacob's lungs develop faster in case early delivery is needed.  I had another ultrasound this morning to monitor his heart rhythm, which was 85bmp, and will go into the MFAU again this afternoon to receive the second steroid shot.

My family is feeling devastated all over again right now.  We had finally reached a place of acceptance with the DILV diagnosis and treatment, and now to add this additional condition on top of the DILV may significantly reduce the likelihood of no complications during birth/the first surgery.  Our pediatric Cardiologist has told us to be prepared for the worst case scenario, although it may never happen.  If Jacob can continue along the 80bmp route until he is term that will make a huge difference.  I know that we have been asking for a lot of prayer, but I'd like to ask for a renewed effort concentrating on Jacob's heart rhythm/fluid build-up, making it to full term (one month from Monday past), and for safety during the initial two surgeries.  My faith has taken a hit over the past two days, but I still believe.

Thursday, February 14, 2013

Humbled.

The list of people that I need to say Thank You to is growing daily.  Seriously - I have a list - you should see it! I have been feeling particularly humbled over the past few days by the generosity of the people around me.  People have been generous with their time, with their prayers, with kind words, with their finances.

It's AMAZING.  The financial weight of this trip is being lifted off of our shoulders.  It is more than we ever expected, and is going to take an enormous strain off of us when we are going through the process of the birth, surgery and recovery in the next few months.  3 months is a long time to be living away from home, and an expensive time too.  Thank you from the bottom of my heart for helping us to be able to focus our energy on the most important thing - fixing Jacob's heart and bringing him home.

I feel comfort each day from the prayers that are being sent up for Jacob.  I cannot even count the number of people who assure me each time they see me that they are praying for our family and our baby boy.  A special person who is also a Heart Mom shared the following verse with me:

 "I prayed for this child, and the LORD has granted me what I asked of him."  (1 Samuel 1:27)  

I'm claiming that verse tonight for Jacob, and for all who are praying for him.

It's a week of transition for me as I prepare to leave my position at work.  I really need the time between now and when we leave for Toronto to prepare for the trip.  Jacob's room needs to be finished and there are many things that have to be sorted out before we go.  Most importantly, I need to spend time with my girl and to focus on her happiness.  I also need to spend time cuddling my sweet nephew Brandon - he will be dearly missed as well.  Stay tuned - we have another ultrasound next week!

Thursday, February 7, 2013

CHD Awareness Video 2013

This video was created by Heart Moms whose children have had surgeries at the IWK Hospital in Halifax. Near the end of the video there is a little girl with DILV - Jacob's condition. Look how big she is!

Tuesday, February 5, 2013

My Heart Warrior


We had an ultrasound today, and after hearing many positive comments from the nurses and doctors we wanted to share that with you all.  Jacob is weighing in at 3lbs 11oz, at just 31 weeks and 1 day old.  The measurements from the ultrasound showed that he is measuring about 5 days further - 30 weeks 6 days.  My little warrior is thriving despite the odds.  Thank you God!  There were several extra tests and measurements that they did, covering such things as fetal movement, breathing, fluid density and heart rate - and the nurse told us that Jacob scored 100% on all of these! How amazing is that - with only half a heart my baby boy is staying strong and thriving!  There is power in prayer!

February 7-14 marks Congenital Heart Defect Awareness Week (CHD Awareness Week).  Congenital Heart Defects are the most common type of birth defect in Canada and the US.  Although Jacob's diagnosis is a rare one, I want to celebrate Jacob's progress every day!

If you have been following along with us on this blog, than you may remember me being upset over a statistic that we received in Toronto almost 2 weeks ago.  The fetal cardiologist told us that 75% of DILV children live to the age of 10 (which is 10% better than the stats of the original diagnosis of HLHS).  Being a Mom, I took this to heart to mean that my baby would likely have more health issues to deal with after the age of 10.  After speaking to the pediatric cardiologist at home, I now feel a million times more positive about this statistic.  Our cardiologist held my hand and explained that the quote was from a study that followed babies from birth to ten years of age - hence the 10 year mark.  It was not meant to imply that Jacob would not live past 10, or would have to deal with other major issues after the age of 10.  The possibility always exists that his heart may not thrive, or may fail, but these are unlikely scenarios after he has made it through the 3 initial surgeries and has a heart that works well with only the left side.  In fact, the cardiologist told us that the oldest survivors of single ventricle surgeries are living high quality lives with few limitations - and there is no reason why Jacob will not be just like them.  That is a reason to celebrate!

We have been overwhelmed by the generosity of others over these past couple of weeks, it seems like whenever I turn around someone wants to give financially or to organize a fundraiser on our behalf - I don't know how I am ever going to be able to say Thank You enough times to all of these people.  But maybe, in a few years Jacob himself will be able to say thank you - and that will be so much better than hearing the words from me!  I'm especially thankful for all the prayers - keep sending them up!

Monday, February 4, 2013

The Chosen One



I had a dream the other night.
It came to me so clear.
I stood before the throne of God, afraid to come too near.
God said to me, "I hear your prayers. There are answers you can't find.
  I brought you here to talk to me and help to ease your mind.
I said,"Well, yes, God, I am upset...About my special one."
This punishment... is awfully harsh...Whatever have I done?"
  God looked at me and shook his head, He said, "My Dear, you've got it wrong.
  I sent this special child to you because you are so strong.
I searched and searched to try and find someone with a love so rare.
Parents so unselfish they could give him that special care.
I try to save my special gifts, like those you're speaking of,
for a special kind of parents I call the 'Chosen Ones'.
Of all the ones to choose from, I know I've got it done...
Parents who deserve my best, an honor you have won.

Source: www.ajourneytoawholeheart.blogspot.com