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!  

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.

Appointment with Dr. Consavage - 8/3/12

Today was another appointment (4th appointment this week!!).

Dr. Consavage check Iain's oxygen saturation, listened to his heart and checked his weight.  His oxygen level was 100!  He also is 2 oz. above his birth weight, so 7lb. 5 oz.!  Also great news!  Another great appointment!

Dr. Consavage goes on vacation this week & since Iain's oxygen saturation have been so great, we won't go back until Monday, August 13th.

We do have another family Dr. visit this coming week, to follow up on our cardiology appointments.

We are also waiting on the results from Iain's chromosome test.  They are looking to see if he has Digeorge Syndrome, which is often linked to Tetralogy of Fallot.  We are praying that this is NOT the case, that there is no chromosome abnormalities.  Hopefully, our family Dr. will have the result of that test by the time we have our appointment.

First Appointment with Dr. Consavage - Tuesday 7/31/12

Today was our first appointment with Dr. Consavage (outside of the hospital).

They checked his oxygen saturation (which they will continue to do regularly).  It was 99 which is perfect!  They want to see anything 94 to 100, which is the normal range.

They did Iain's 3rd Echo Cardiogram to verify that nothing has changed since birth.    He will have regular Echo's as part of his normal check ups.  Nothing seems to have changed, which is also great news!

We left with an appointment to check his oxygen saturation on Friday, 8/3/12.

As Tim and I have been filtering through all this new information, we've also been trying to figure out how to decide on a Dr.  We have 3 options for Iain's surgery, Penn  State Childrens Hospital (Hershey Med), Childrens Hospital of Philadelphia (CHOP) and Childrens Hospital of DC.  Obviously, Penn State would be the easiest, since it's so close to home.  However, we want to pick based on the surgeons experience.

The Drs. at Holy Spirit & Dr. Consavage suggested Penn State.  So, we pursued a meeting with the Chief Surgeon of Pediatric Cardiology at Penn State.

 The next day, we received a call, asking to meet Dr. Myers at Penn State on Thursday at 9:00AM.