Update at 5 weeks old

This week Iain had a family Dr. Well Visit.  He is doing great.  His clogged eye ducts are getting better, & his weight was in the 45 percentile .  He is growing well! 
He will soon be scheduled for a follow up hearing test as he failed the newborn test by just 10% in his right ear.

Today was his cardiologist appointment.  His O2 saturation was 99% again.  The Dr. doubled his dosage of Propranolol.  He said we are still on track for surgery about 4 or 5 weeks from now. 

We head back to see Dr. Consevage in 10 days.

Thank you for your faithful prayers!!

Changes are Starting

Thursday was another cardiologist appointment for Iain.  His oxygen saturation was great again, 99.

However, his Echo Cardiogram wasn't so great. 

Here is my limited understanding of what is occurring.

Iain's Pulmonary Valve is growing narrower as muscle tissue builds up.  It is causing a "tightening" of the Pulmonary Valve.  This does two things.

1.  It restricts blood flow to the lungs, resulting in low oxygen running through Iain's body.  We will most likely begin to see Iain's Oxygen Saturation begin to decline.  

2.  The tightening of the Pulmonary Valve also can cause the blood flowing between the left and right chambers to change.  For example, the blood could flow more quickly from the left, into the right.  This most likely would cause a "blue spell".   From what I understand, we will know when a blue spell occurs. There is no questioning it as it's quite obvious.  He gave us a few tips about how to respond and then we will be heading right to Hershey Med for surgery.

The goal was to get Iain close to 6 months before having open heart surgery.  Now, Dr. Consavage said he hopes to get Iain to 2 months of age before needing surgery.  Iain is now 4 weeks old.

He started Iain on Propranolol, which is a beta blocker.  My understanding is that it will not reverse the muscle build up that has already occurred, but that it will help to slow further muscle build up or "tightening".  He is starting on a very low dose, which will be changed as he continues to gain weight.  He's currently gaining about 40 grams a day.  At his appointment on Thursday, he weighed 9 lbs. 4 oz.  So, just about 2 lbs over birth weight!

If the medication works really well, there is a chance that surgery could be pushed off till 4 months, but Dr. Consavage isn't real positive about that.  So, the goal right now, is to get Iain to 2 months of age.  And we will go from there.

Please pray for us as we were not anticipating this to start so quickly.  I certainly wasn't prepared for this news at this appointment.  I was alone, so this information is coming from my understanding of what the Dr. said to me, without having Tim's ears to help filter and understand.  Open heart surgery on such a little body is so hard to fathom and difficult to swallow.  BUT, we are thankful for God's provision in great Cardiologists and Surgeons so close to home.

Thank you for your continued prayers for Iain.  Our prayer is for his safety & health above all else!  

This is my anthem, this is my song...

These days I find it even more important to keep my mind focused on what truly matters.  It's ALWAYS easy to make circumstances larger than the Cross and Christ. 

Fear is my constant battle as I consider the days before us.  Daily as I study Iain's skin color, breathing & eating patterns and feel his little heart thumping, fear is creeping in.  Any moment that I consider details of open heart surgery, fear grips me.

I find that listening to worship music throughout my days is a meager attempt at guarding my heart and mind from overwhelming fear.

So, here is the current anthem of my heart...

Never Once - Matt Redman

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Iain's First Visitors!

We had many visitors (this happens when you have large families!!) the days after Iain was born.  Here's a taste!

 Uncle Cameron and Iain

 Aunt Liz and Iain

 Mimi and Iain

 Uncle Joel

Poppy and Iain 

 Grandma and Iain

 Grandpa and Iain

 Aunt Rachel and Iain

 Grandma, Grandpa and Iain

 Cole (cousin) and Iain

 Spencer (cousin) and Iain

 Aunt Denise and Iain

 Aunt Kristen and Iain

 Aunt Abigail and Iain

 Amber and Iain

 Caila and Iain

 Jim and Iain

 Kim and Iain

 Destiny and Iain

 Joel and Kayla

Kayla and Iain

We missed getting photo's of Aunt Janelle, Uncle Matthew and Aunt Theresa!  

We are so thankful for all our family and friends who have joined in celebrating Iain's first days of life!

Cardiologist Appointment Update & Clearing Up a Misconception

Today was another appointment with Iain's cardiologist.

Iain's oxygen saturation was great again!  His heart sounds the same as it did at the last appointment, so the Dr. decided NOT to do an Echo today. Which makes both Iain AND Mommy happy!  (I'm not a fan of holding my baby down for 30 minutes or more!)

We will go back in 10 days to check on little Iain's heart.

We also got back a VERY IMPORTANT test result!  Iain does NOT have Degeorge's Syndrome!  We are so thankful to God!

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Now, onto the misconception...

Over the weekend, we had the opportunity to chat with people.  Tim and I both came upon multiple conversations that made it evident to us that folks are misunderstanding Iain's situation.

When folks hear that Iain is doing well, that his oxygen saturation is normal a common response we get is something like this, "So, does that mean that Iain won't need surgery?" or "So, does that mean his heart is developing and fixing itself?". 

Barring a miracle from God (and we pray for this daily!) Iain will MOST DEFINITELY have surgery.  The real question is "when will he have surgery?".  

Iain is what is known as a "Pink Tet".  His skin is pink, not blue because he's currently receiving enough oxygen.  However, this is NORMAL with many TOF babies.  What will happen over time is that Iain will begin to decline.  The Pulmonary Valve (which is already 40% narrower than normal) will continue to narrow, therefore restricting the blood flow from getting to the lungs.  This will cause his Oxygen Saturation to decline (cyanosis).  Once it starts to decline, it will not go back up, it will not plateau.  That is when medication and surgery will be scheduled.

So Iain is truly doing well, but we are in a holding pattern, waiting until he starts to decline.