Thursday, August 30, 2012

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!!

Friday, August 24, 2012

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!  

Wednesday, August 22, 2012

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

Monday, August 13, 2012

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!

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.

Saturday, August 11, 2012

Our First Day with Iain

 Tim and I on day ONE of induction...
 The moment I saw Iain (40 hours after starting the birth process)!
 Around 6:30 AM
 One of our favorite Nurses, Dixie.  We've had her for all three kids!
 One of the reasons we love her so much is because of how well she cared for me after Nora was born.  
 A very tired Mommy & Iain
 First diaper change
 Big Sisters meeting Iain for the first time!

Thursday, August 9, 2012

Meet Dr. John Myers

So, today I thought it would be nice for you, our friends, family and those that are interceding on Iain's behalf, to get a little glimpse of who Iain's surgeon is.

Here's an article from 2008 & a link to his PSU Profile.

Pediatric cardiologist
Dr. Jack Myers is a healer of broken hearts — the kind damaged by congenital malformations, blockage and poorly oxygenated blood.
As the chief of pediatric and congenital cardiac surgery at Penn State Children’s Hospital, Myers joins Drs. Stephen Cyran, Patrick McQuillan and Steven Lucking for about nine days each November to perform free surgeries in Guayaquil, Ecuador.
Myers first began his medical missionary work in the 1980s, traveling to a small mountain town in Colombia with an antiquated hospital. But when his team of 10 or 12 surgeons grew too large, the U.S. State Department issued warnings about their safety, prompting a brief hiatus. When they began traveling again, they flew in to steamy riverside Guayaquil, as part of the Lifeline program, an offshoot of Variety Children’s International.
The hospital where they operated initially was “old and dilapidated,” Myers said, and “would have been condemned if it was here in the United States.” They worked under an open metal roof, and live insects ran out of the spigot when they turned on the water.
Then, a new hospital was built, and for the past 12 years, they’ve operated out of a 400-bed children’s hospital with large old-style wards and seven or eight operating rooms. Because they lack operating tables, anesthesia machines, monitors and other equipment, they often take these items with them.
As the father of five, Myers often is accompanied by one of his children. The team also tries to take 12 young people with them each year, with differing levels of experience — some from high school, some honor students from Penn State and some from the medical school.
The doctors take care of about 15 to 20 cases each week and can do up to 30 to 34 open heart surgeries.
Many of the patients have a condition in which a hole exists between the pumping chambers of the heart. Before life-saving surgery, it looks like their tiny patients’ lips are stained with grape juice, he said; their eyes are bloodshot, and their energy levels are very low. Patients achieve a “dramatic response” after surgery, yielding an almost instantaneous transformation.
“You can’t imagine the joy on a parent’s face when their child is no longer blue and can get up out of bed and run around,” Myers said.
Myers knows that they are just scratching the surface of need. They help as many children as they can, but they must select the patients with the greatest chance of survival.
They did gamble on one memorable 4- or 5-year-old boy.
It was McQuillan, an anesthesiologist, who urged Myers to take a look at him. It was their last day. The surgeons debated whether the boy was too sick for surgery. Then, instead of eating dinner, they went to work.
The next day, the child was totally off of all machines. He immediately started talking and asked for breakfast. “He did fantastic,” Myers recalled.
The doctors usually see that boy every year. “We can’t operate on everybody,” but this was one gamble that paid off, Myers said.
As a result of the trips, the team appreciates life’s luxuries more. And citing the camaraderie and team-building that results, he called the visits “one of the highlights of our professional career.”
Clearly, they are touching people’s hearts.

Iain's 2 week check up

Iain had a family Dr. check up today.  They just wanted to follow up with us after his most recent Cardiologist appointments.

He is 7 lbs 15 oz. so ALMOST 8 lbs.  Which is great news!  We want to continue seeing him gain weight.

His poor eyes have been all yucky the past two weeks.  It looks like both his tear ducts are clogged.  So, we are trying to fix that at home.  Hopefully we can massage away whatever the blockage is!  

Otherwise, he is looking great!

We have another Cardiologist appointment on Monday, August 13th.


The past 6 or 7 days have been rough for me, emotionally.  Ever since our meeting with Dr. Myers (Iain's Surgeon) it's been hard to NOT think of his surgery.  It has made it hard to fall sleep (when I get the chance to sleep).  It's been hard trying to stop wondering about "what ifs" and visualizing what Iain will have to go through during open heart surgery.

Tim has been faithful to pray with me.  I am so thankful for his strength and care for me during this time.

Tim also started working back at both jobs this week.  It was so nice to have him around more the last two weeks.  Having days where we don't see him is difficult.  The girls and I all do better when he is around.  We are so thankful for his hard work and God given strength to continue this type of schedule.

We continue to pray that God would provide ONE job for Tim.  Now our prayers are for ONE job with GREAT health insurance for Iain.

Thank you for all your prayers!

Saturday, August 4, 2012

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.

Dr. Myers - 8/2/12

Today we met with Dr. Myers (Chief Surgeon of Pediatric Cardiology) at Penn State Childrens Hospital.  We were surprised to have a meeting with him so quickly!

He was able to answer the questions we had.  I'm sure we'll have more as we learn more.  He will be doing Iain's surgery.  Over the last 25 years, he has done a few hundred surgeries specifically on children with Tetralogy of Fallot.  He does about 225 heart surgeries a year.  In fact, we have a friend who Dr. Myers has done 3 surgeries over her childhood.

One of the reasons we chose to go ahead with Dr. Myers is his experience.  Also, Dr. Consavage has a niece who needed life saving heart surgery when she was born.  He had the option to send her to CHOP or PSU.  He chose Dr. Myers for his own family.  That spoke to us.

The plan is to get Iain as old as possible, up to 6 months.  However, if his oxygen saturation begins to decline, then surgery is imminent.

His stats won't change necessarily from day to day, but could from week to week.  This is why we will be seeing Dr. Consavage on a weekly basis.  Normally once oxygen levels start going down, they don't plateau, they continue downward. This will probably be the first sign that he needs surgery sooner, rather than later.  Other reasons he could have surgery sooner is if he has a "blue spell" or something on his Echo shows changes in Iain's heart.

We asked Dr. Myers, if we should stay at Moffitt, or pursue PSU's Pediatric Cardiology practice.  He suggested we stick with Moffitt (Dr. Consavage worked at PSU 15 Years ago, alongside Dr. Myers).  He believes that because it's a smaller practice, Iain will get better care.  He will see the same Drs, (there are only 2 at Moffitt) rather than seeing so many, that Iain would rarely see the same Dr. at PSU.

We toured the Children's Hospital, the Pediatric ICU (where Iain will be after surgery)  & Intermediary Care (where Iain should spend his last days in the hospital after surgery).

As many of you locally are aware, PSU is working on their brand new Childrens Hospital.  If Iain doesn't get his surgery earlier than 6 months, we may be one of the first patients there!  While we don't care so much about a nice new hospital, compared to a great surgeon, it would be pretty cool to be one of the first in a brand new hospital!

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.

Release Day 7/28/12

Saturday we were finally released after 6 days in the hospital!  Thankfully, because Iain was doing SO well, he was able to come home with us!

We are thankful to see God's hand on Iain's life.  Iain's oxygenated and non oxygenated blood is flowing equally from one ventricle to the next.  At the same time, the narrowing of his Pulmonary Valve keeps the blood from flowing too quickly, thus keeping the blood flow equal.

It is our understanding that if the Pulmonary Valve opening was larger, there would be a higher chance that one of the ventricles would push more blood through, thus making the blood flow either with too much oxygen or not enough oxygen.  We are thankful that so far, this is NOT the case with Iain!  We fully believe this is a gift from God!

We left the hospital with an appointment made to see our family Dr. on Monday and Dr. Consavage at Moffitt on Tuesday.

Birth Day 7/25/12

On this day we welcomed Iain Timothy into our family!  He came after my Doctors decided my blood pressure was too high for too long.  So, they started the induction process on Monday, July 23rd.  By 12:00 AM Wednesday, it became evident that I would need to have a C-Section.

Iain was born at 2:03 AM, Wednesday.

Late Wednesday morning, a nurse mentioned that Iain had a "loud heart murmur". We were not worried about this, because both Nora and Elise have heart murmurs.  In the afternoon, Iain's Neonatologist came to check on him (he had meconium, so she was just following up).  We mentioned the heart murmur, which she didn't hear earlier in the day.  After hearing it, she decided to give him an Echo Cardiogram right away.

Tim and I still were not worried at this point.

At 9:00 PM we were visited by a Cardiologist from Moffitt Heart & Vascular Group.  At this point, before he even started speaking, we knew something was wrong.

This is when Dr. Consevage explained that Iain has a congenital heart defect known as Tetralogy of Fallot.

The following hours and day or 2 were spent in shock.  We had questions, concerns, multiple emotions changing from moment to moment.  Tim and I prayed for peace, understanding, healing and health for Iain.  We continue to pray for these blessings from God.