The Nitty Gritty

This recent heart cath was done to see how Natalie's heart is progressing toward getting big enough for the Fontan and also to get a measurement of her left ventricle.  The echo that her cardiologist did in January sparked some discussion about whether her LV might have grown enough that it could support a systemic load (meaning it could function like a normal LV).  It is very rare that this happens, so we were both excited and skeptical of what we might find.

Dr. Jones told us that Natalie's pulmonary arteries are wide open and the pressures are great.  There is no narrowing at her Glen site (which is very common).  Her heart function overall looks good and at rest her oxygen saturations were in the low to mid 80's.  I found it interesting that her cath report showed her SaO2 (oxygen saturations) coming from her lungs (red blood) were 97% and then the blue blood coming from to her heart to pick up blood was 69%.  Those mixing together in the right side of her heart even out to around 80%.  Her hemoglobin is 17.1mg/dl which tells us that her body is compensating for her increasing need for oxygen as she gets bigger by increasing her oxygen-carrying ability (making more red blood cells).  Normal hemoglobin levels are between 13-15mg/dl.  Where she is right now is good for her, but as she gets bigger, she will increase her production of Hgb.  When it gets over 18mg/dl, the blood starts to get thick and sticky, prone to clotting.  So when she gets to that point, we will know that it's time for the next step.

We did find out that Natalie's left ventricle is still too small to sustain life by itself.  The normal volume that a LV of a child her size would hold around 75ml.  Hers holds about 20ml, clearly not enough to support systemic cardiac output.

So her next step will be the Fontan surgery.  We are not sure when that will be but have been told that we could wait up until a year from now to do it.

Natalie's Heart Cath

 
Tuesday the 24th of April we headed into Anchorage bright and early to catch an afternoon flight to Seattle.  Natalie was so cute.  She wanted to pull the suitcase with the wheels on it and she had her little pink Seattle Children's Hospital bag with her bunny's head hanging out of it.  Natalie was so excited to ride on an airplane and see the giraffes, elephants and fish at the hospital.  Thankfully, she didn't have any bad feelings from last time toward the place.

 We didn't have to wait long before they took us back to the surgical pre-op area.  She hopped right into her little gown.

Then we waited.

 She climbed on what she could find, joked around and watched Happy Feet 2 while a myriad of people in green scrubs came in and out of the room to ask questions and bring consents to be signed.  We were told that the cath would take an hour to hour and a half.  When the last few doctors and anesthesiologists started coming in and checking Natalie out, she became apprehensive.  When I put on the white jumpsuit and hairnet so I could take her back to the cath lab, she ran for daddy.  Then came the hard part.  I took her back to the cath lab and she was holding back the tears.  Thankfully, I was allowed to hold her as she was given the gas to make her go to sleep. 

Almost two and a half hours later, we got the page that the doctor was ready to talk to us.

We talked with Dr. Jones and then were sent to the floor to meet Natalie when she came out of recovery.  Because Natalie had so many clots form in her groin (on both sides) when she was a baby, they can't access her for a cath there.  So along with gaining access to her superior vena cava and pulmonary arteries through her right jugular vein, they had to go through her liver to be able to get into the heart to measure pressures there.  This brings along an increased risk of bleeding so Dr. J wanted her to spend the night in the hospital to be monitored.

As Natalie was wheeled into her room, the nurses said that she was the perfect patient.  Natalie's face was expressionless, but when she saw us, she scowled-not exactly the reaction I was expecting.  This time around, Natalie was scared.  She turned toward me reaching her hands out and the tears started rolling.  After that, every time a doctor, resident, fellow or nurse came into the room, she became stoic and hid in her pillow.

It wasn't until she had eaten two purple Popsicles and a Reese's Peanut Butter Bunny did we see this smile.  It was back...as long as Mom and Dad were the only ones by her bed.

Even though I was totally disappointed that Natalie had to spend the night in the hospital (or maybe that I needed to stay there and sleep on one of those wonderful couches), God blessed us with being able to room with some special friends.  Teagan is a little girl the same age as Natalie who has the exact same cardiac anatomy as Natalie.  I met Teagan's mom through a mutual friend the last week of Natalie's first hospitalization in March four years ago.  Unfortunately, even though Teagan was actually in the hospital at that time, we didn't meet.  I've talked with Teagan's mom on the phone several times and this time was able to meet Teagan's mom and dad in person.  It was such a blessing to get to know them.

Natalie wasn't too sure about the wagon ride the night of her cath.  But after a bit of Tylenol, she warmed up to Teagan and watched a TV show in bed with her.

 
Maybe it was the cute jammies that she was given by Teagan or maybe it was knowing that she was going home, but Natalie's silly side started to show again.  I'm glad that she did make a new friend.  They are both on the same track and we look forward to having someone to travel this road with.

Natalie and Teagan along with their moms

Odds and Ends

Distraction from Easter Egg Hunting (Natalie and cousin Caleb)

Craig spying out the Eggs

Jessie's indoor project

Skier's Paradise-Thompson Pass near Valdez, AK

Can't you see the mischief.  (Craig and cousin Olivia)

Thompson Pass-March 2012

 

You've heard about all the snow Valdez, AK had this year.
This is about all you could see of buildings from the road and
that's after some melting.

Natalie and Mom sledding by Worthington Glacier in Thompson Pass

Worthington Glacier

Our April 1st surprise of 5 inches of snow brought Frostine to us.

Easter Sunday 2012

A dicotomy of sorts, but this is Spring in AK.
The girls were picking pussy willows.  It's always exciting when
we see the first pussy willow come out.  We know
that Spring is here.

Renewing Faith

Natalie Easter Egg Hunting in the snow

The changing of season brings about reflections for me.  I guess I'm getting old enough that I have enough memories to be reborn every year as I review previous years.  In January and February, I started to review Natalie's heart story on her Caring Bridge website.  I laughed at some of the things that happened, remembered the times when I just had that sinking feeling in my heart and re-lived the day that I was ready to give up and just let her go to Heaven.  I look back and realize that at Natalie's birth and the first several weeks into our journey with her failing heart, I really didn't acknowledge the severity of her ailing heart.  I heard the doctor's say, "You have a very sick baby"  and "We are going to be doing surgery so she can survive with the half of her heart that is still functioning."  It reached my mind, but didn't make it to my heart.  Maybe it was God sparing me from the heartache so I could make it through moment by moment.  Maybe it was denial on my part.  I don't know.  I do know that the peace that both Tim and I experienced was from the myriad of people we had praying for us.


I think my lowest point emotionally came the day before Valentine's Day 2008 when the doctors told me that it was time to consult with the Heart Transplant Team.  The arrhythmias that she had developed were life threatening to her little heart.  I couldn't imagine enduring any more time away from my family and enduring endless hours in the hospital.  Just the idea of all the waiting for a transplant and then all the follow-up flying back and forth to Seattle just seemed insurmountable.  She had already been through so much, I figured the Lord just wanted to take her home.  I was ready to give her up.


God had other plans for her.  Five days later, her arrhythmias were controlled and her heart and lung function were good enough that she was taken off of the ventilator.  As we met with her heart surgeon we were told that "Natalie's reaction to the Sotalol for her arrhythmias is unusual and surprising. He said that usually the arrhythmias are not totally controlled by this medication."   My response was, "I think he's forgetting to figure in the 'God factor'."   In further conversation with this doctor, we discussed the specifics of Natalie's heart and long-term prognosis.  I brought up the idea of her left ventricle growing since it still had blood flow going through it and it did have a little function.  His response was disappointing when he said that it wouldn't probably grow.  He'd never seen it happen.  It seemed that once your child was diagnosed with HLHS and only one functioning ventricle, it was a sentance.


Fast forward almost 4 years to the day, February 17, 2012.  I was going about my normal morning activities when I get a phone call from Dr. Lewin from Seattle Children's.  He had been doing some review of Natalie's last heart echocardiogram with Dr. Brauner as he was coming up every two weeks to fill in for Dr. B (who is retiring).  His next statement floored me.  "We've been looking at the echo and are thinking that Natalie's left ventricle may have grown to the point that it may be able to sustain function to her whole body."  He explained that as we are coming closer to the time when Natalie will be needing her Fontan surgery, he would like to explore "other options" instead of blindly going down the Fontan route.  


I asked him, "So how often does this happen when a diagnosed HLHS kid has their left ventricle grow."  

Dr. Lewin said, "Very rarely!"

Tim and I went and had a meeting with Dr. Lewin in March.  We still have many questions about the possibility of what might be done-reversal of her first surgery or something else.  I, with my critically thinking mind on pathophysiology, have racked my brian with all the possible combinations.  It's been hard not to dwell on the possibilities.  It's exciting and scary all at the same time.   When we talked about the longevity of a post-Fontan HLHS heart, Dr. L said typically a transplant is needed in 15-20 years.  Plus there is a myriad of other problems that can arise.  So if there is a possibility that Natalie could function with a 4 chamber heart, this would be of great benefit to her long-term prognosis.

All I could think about were all those prayers that we and others have offered up for our family and little girl.  When we were discouraged, God said, "Don't be afraid, for I am with you.  Don't be discouraged, for I am your God.  I will strengthen you and help you.  I will hold you up with my victorious right hand." (Isaiah 41:10 NLT)  


I think I had faith enough to say that our little girl would be with us, but this miracle that God's given us is by far more than I could have ever imagined.  There are times that I wonder "Why me?  Why Natalie?  Why do we deserve such goodness?"  We don't.  It just comes down to Natalie's middle name, "Grace."  We are experiencing grace-something we don't deserve and haven't earned.  It's God's gift to us.  "He gives power to the weak and strength to the powerless." (Isaiah 40:29NLT)  "The Lord is the everlasting God, the Creator of all the earth.  He never grows weak or weary.  No one can measure the depths of his understanding." (Isaiah 40:28 NLT)  While I still wrestle with the trials these little ones must go through, I can see that maybe, just maybe, God wants to show His power to the world through those who trust Him.


So now we are trusting the Creator of the Universe in His plan for our child.  We are trusting Him to give the doctors wisdom as they do an experimental heart cath the end of this month to see what her heart function really looks like and find the numbers that will guide them in what to do next.  I would love to hear again, "This is very unusual and surprising."  So I can say, "Don't forget the God factor!  He can do anything!"


Please join us in prayer for wisdom all around and praise to our Lord for what He has done!

Bragging Rites

March has flown by and our oldest daughter has started her tenth year of life without my acknowledgement of it on here.  It's hard for me to believe that Heidi is nine!  She's completed her last year in single digits...never to return again. 

I have to say that she amazes me every year with her growing independent spirit.  (She's so much like her Mom.)  Sometimes I feel like my arms are so full that I can feel her slipping through my fingers as she gets older.  Heidi's independence has allowed her the freedom to try new things and challenge herself.  She has that perfectionistic drive that comes naturally to the firstborn.  It's hard on her to not be the first or the best at something, but she's learning those hard lessons in growing up. 

I have to brag on her a bit.  She is so good at mothering and has enjoyed her new "babysitting" responsibilities that I give her on occasion.  She's taken her creativity to a new level by sewing with her Aunt Daisy.  She's creating cloth headbands that are really cute.  Maybe she'll develop a new little business for herself selling them.  Heidi got glowing reports from her teacher at parent/teacher conferences lately.  Heidi loves school and the academic world.  Her favorite subjects are math and science tho she is advanced in her reading too.  Her teacher said that she is so understanding and compassionate with kids who may irritate others in the class or not be in the popular crowd.  She loving sets limits with them, but still is their friend.  This makes my heart burst with pride as I can see where she is letting Jesus' love show to others.