Natalie's Fontan

Natalie had her Fontan open heart surgery today.  I have been updating her www.caringbridge.com/visit/nataliehand website frequently.

Dr. McMullin did a non-fenestrated extra-cardiac Fontan surgery today on Natalie.  She did very good even though she was still intubated when she came out of surgery.  She's been such a good girl and has followed instructions and communicated with the nurse.  I'm really proud of her.  She usually doesn't like talking with strangers so this is a positive step forward for her.

She was extubated around 9PM tonight and has done wonderfully.  She's had lots of chest tube drainage and so her blood pressures have needed some bolstering with fluids, but all-in-all she's doing great.

Back-Tracking-Jessie's Birthday

Jessica's birthday post got overlooked due to some unexpected losses in our family so here are a few pictures from her birthday.  Jess wanted a flashy cake this year.  I'd never done a tiered cake with this many layers before so when it was done it looked like the leaning tower of Pisa.  She thought it was perfect so that was all that mattered.

 

Jess is such a goof-ball.  She loves life and lives it to it's max!  She speaks what she means and means what she says.  She works hard in school and yet loves to play.

 

Jessie and Heidi love the sledding hill close to our house.  With the days nearing 12 hours of daylight lately and temperatures above zero degrees Fahrenheit, the girls take to the hill more often.

Jess can be a self-proclaimed Tomboy, but she does like to cuddle her new little cousin.

What a privilege it is to have had eight full years with this girl. 

 

I Will Trust in You

Had another one of those "moments" when I thought all the kids were in bed sleeping and I hear Natalie crying.  I go in and find her sitting on the side of her bed sobbing. 
I ask, "What in the world is wrong with you, Natalie?"  (She had found every excuse under the sun to get out of bed earlier in the evening.  I had no compassion.)

Through her tears..."I don't want the doctors to cut my heart!"
Wow.  Where did that come from?  I wondered if she had a dream.  I pulled her in close.
But I asked a stupid question, "Why?"  Dumb I know, but I was a little shell shocked.
"Because it might hurt!"
Well, I'm supposed to have all the answers, so I gave the obvious.  "Baby, they give you medicine so it doesn't hurt.  They aren't going to cut your heart right now.  We don't need to think about this right now."

My mind was racing as to how to respond in comfort to her when my heart was wishing that she didn't have to think about this.  Was her perception greater than I thought?   When I was praying for a child going through heart surgery one day, she asked if she was going to have her heart cut again.  I have off handedly mentioned that she will need another heart surgery someday.  We don't talk about it a lot.  Did she hear me talking with someone else about it?  I was trying to figure out what caused her to dwell on this.

"...but Heidi and Jessie don't have to have their heart cut."
"Oh, but God made you special, Natalie...and He has a plan for you.  He loves you very much and He will help you get through this."

Oh, sweet baby, I so wish that I could turn your fear away.  You realize that you're different.  You do understand more than I want you to know.  Did your Grandpa's death this past week cause you to ponder immortality?  Do you make the connection between your scarred heart and the fine line between life and death?

"When I am afraid I will trust in You, I will trust in You, I will trust in You..." I sing hoping that turning her thoughts to Jesus will give her comfort that this mom can't.  "When I am afraid, I will trust in You, in God who's Word I praise."  I sit criss-cross applesauce on the floor, swaying back and forth holding her tight.  My arms wrap around her little chest.  She strokes my face with her hands.  "In God I trust, when I am afraid.  In God I trust, it's God who keeps me safe.  When I am afraid, I will trust in You, I will trust in You, I will trust in You.  When I am afraid, I will trust in You, in God whose word I praise."  My voice hardly makes it to the last phrase as tears roll down my face.  The privilege that this moment has to bring does not soften the pain in it. 

January 7, 2013  A new year.  The bedtime routine was broken once again.  Up to the bathroom.  "I'm thirsty."  "Warm my hot-pack up~pleeeease."  Sometimes I seem like such a softy, catering to their every want.  Craig's eyes were getting heavy.  Natalie had been looking at a book.  My day was not over as I slowly opened the door to their room.  I had an arm-load of clothes to put away.
"Mommy?"
"What baby?"
"Um...how do I do that thing so I can go to Heaven?"
We had talked with her about how Jesus died on the cross for her sin.  How He came to take the punishment for our sin by His own death on a cross.  She knew that she had sin in her life.  We had
talked about it almost on a daily basis as she was confronted with her anger toward her siblings, her selfishness-wanting her own way.  We all know that we aren't perfect.  We can't match up to a Holy God.
Heidi had gently told Natalie about how Jesus wanted us to live in Heaven with Him...to be His friends.  She had told her about how Jesus paid our debt.
"Natalie, please go out and sit with you dad and I'll be out in a minute."
It was a sacred moment, the three of us, talking to God.  She asked Jesus to come into her heart and be her Savior, to take her payment.  Her little face beamed as we talked about Heaven. 
"And I can pet the lions in Heaven?"
"Yes, you can even pet the lions in Heaven."
Many questions rumbled around in that little head of hers, but her little body had to succome to sleep sometime so it was off to bed for her.

That Saturday started in a lazy way...until the phone call.  Ambulance, phone calls, tears, fears.  The Heavens opened up and welcomed her Grandpa.  Natalie's Grandpa Hand got to go see Jesus!  Just four days before, he had found out that Natalie had asked Jesus into her heart.  Jokes about old and crippled joints gave way to talk of "not being around."  Our mortal life rarely focuses on eternity.  Young at 71, our children knew their grandpa looking far beyond his years.  His rough Alaskan life had taken a toll on his body.  Grandpa was known for his love of farming, hunting and horse.  The girls love for horses was seeded in their grandpa.  But no way were they prepared for his departure from this world.

I'm so thankful that I'm not the ultimate authority on life.  I don't have all the answers.  There have been too many times recently when I've felt helplessly needy for an answer.  It's then that God sticks His Word, the Bible, in my face and says, "Can you trust Me?"  So I have to make a daily choice, or it may be more moment by moment.  Who is in control?  I give up!  I give up to the One who is in control, the One who has the big picture on His wall. 

Happy Heart Day

 Happy Heart Day to all!



 

 

Today is Heart Day, promoting awareness of congenital heart defects. 
As you all know, this subject is near and dear to our hearts.  We have more than one experience with CHD's in our extended family. 
Natalie has done quite well with her single functioning ventricle.  She is out growing her "Glenn" physiology and so we are anticipating her Fontan surgery in April.

Last Friday, Natalie met a new cardiologist as her cardiologist that she has known since birth is retiring.  Dr. Christiansen discussed the Fontan with us.  Natalie is definitely ready.  Her oxygen sats dropped from 85% to 75% in the past 6 months.  She is much more winded with any type of activity and I've been noticing some puffiness in her face in the mornings.  Dr. C thought that this may be due to her outgrowing her Glenn and needing to press on to the Fontan.  She is weighing in at just 33 pounds, not gaining any weight for the past six months but has sprouted up a little bit and it 40 inches tall.

She had an EKG and Echo done also.  Her EKG was perfect.  It's hard to believe that she had such a rough time with arrhythmias when she was two months old.  So many difficulties that the surgeons were thinking that she might need to go down the transplant route.  We thank the Lord that her arrhythmias resolved themselves through much prayer and medication and she hasn't had any issues with rhythm since.  Her echo hasn't changed since August according to the cardiologist.  He speculated that some of her drop in oxygen saturation may be due to her developing more collateral circulation.  We wouldn't know for sure if that is the case unless she were to go for a cath.

Natalie with new cousin Lacy

So the next step is for the Anchorage cardiologist to present her to Seattle cardiology team for the Fontan procedure.  Then we will hear from scheduling.  Tim and I would both like for her to have surgery before the middle of April...but we all know that scheduling in a surgical setting is always fluid-subject to change.  We are praying that she will remain healthy up until that point and that all the details will work together to get her and our family there.  We are hoping that for her sake and the coping mechanisms of all of our children that we will be able to experience this together and not thousands of miles apart.

We are very thankful and grateful for how well our daughter has done with her half-a-heart.  God is good...all the time.

It's been 5 Years!

Natalie's birthday was yesterday. She is five years old! What a grown up girl she's become. Natalie can't wait for the day when she can go to school with her grown up sisters. She's working hard on her pre-school work and she loves to do the computer learning games on PBSkids.org.  I went to the school and met with the principal about what next year might look like for Natalie. It's going to be hard to tell what 2013 will bring with it.

We are anticipating her 3rd open-heart surgery next April. Natalie had a cardiologist appointment in August where we discussed the plan for her Fontan surgery. Dr. B. said that she is stable and can wait until we are ready. Both Tim and I would like her to have it done with and recovered before Kindergarten starts. It's hard to think of "wanting" to put our child through an open-heart surgery, but when we've waited so long to get this last scheduled surgery over with, we look to emotional relief. I'm not a huge worrier, but the anticipation can bring some stress from time to time. So we are tentatively looking to April as the month when Natalie will have her Fontan surgery. She has a check-up in February and at that time Dr. B will present her to Seattle Children's for the Fontan.

Natalie has been very blessed to have had a continual gain in growth and health since coming home for the first time in April of 2008, but many of our heart friends have not been so fortunate. Our hearts go out to them and it keeps reminding us that life is fragile and when living with half of a heart, things can change very quickly.

Natalie has battled with leg cramps at night for a long time. Recently I read a facebook post from a young adult HLHS survivor talk about the leg cramps she's had. She got responses from many different parents about how their cardiac kids have leg cramps at night (and sometimes during the day). Natalie's cardiologist and pediatrician have always thought that her leg cramps were more like growing pains and didn't seem too alarmed. We've used hot rice packs on her legs at night to help with the pain, but sometimes I have to revert to Tylenol or ibuprofen to help. I've always thought that Natalie's were more frequent and worse than any of my other kids. At time's I've doubted her, thinking she's just conning me into getting up with her at night, but now that I know that there are so many other kids out there that deal with this I have a little more sympathy. I don't know that there is a solution, but it's got to be heart/circulation related.

This time of year has bittersweet memories for me. My parents made a surprise visit this past weekend and are planning on staying for three weeks. I find that when circumstances line themselves up in that familiar pattern as they happened five years ago, it brings some unwelcomed emotions back. I don't really have many memories of the week that I was separated from my husband and daughter between Natalie's birthday and my arrival in Seattle. I remember leaving the hospital with empty arms and I remember pumping in my bedroom for hours and hours it seems. I don't remember what Christmas was like, but I do remember sitting in the back row of the church during the Christmas eve service trying to keep it together without my husband. I had dreamed of having a newborn baby in my arms on Christmas day. While I didn't have her in my arms, I was thankful that she was still here on earth with us.

Our love for this feisty little girl has grown so much. I can't really put it into words. She knows how to push my buttons more than any of my other kids, I think. But when she comes back and says, "Mamma, I'm sorry" it just melts my heart. Natalie has been such a blessing in our family and we have learned so much about life, love and loss from her. So stay tuned for updates next year on her next surgery. Thank you again for all of your prayers these five years.

Bigger Boy

We frequently hear from this boy that he doesn't want to follow our instruction because "I a bigger boy now."  I guess that's what comes with the territory.  He had a birthday this month and is all of three now!  He has all the independence that comes with a three year old and more...when it comes to asserting his will.  But some of the little things like self-care he still enjoys to hang back and be served by mom. 

 

We've started working on potty training (which I always dread).  I was an over-achiever with the first two and started them at 18-24 months.  After all the headaches, messes and stress that it caused me, I decided to wait with Natalie until she actually turned three.  It worked a little more smoothly.  I'm just hoping that Craig changes his "want to" and decides to be a Bigger Boy all the way.

Anything that opens/closes, knobs that push, levers that pull-they are all an attraction to our boy.

This Fall I started a campfire in the back part of our yard.  The kids were so excited.  Not many marshmallows actually got roasted as this little guy was popping one after another in his mouth before we even finished our hot dogs.

Chubby Bunny

World's Strongest Boy Contest:  The Brick Roll

Craig loves to climb in, on or around things.  He was a little apprehensive about climbing all the way up to the top of the 10ft ladder when I was cleaning the spotlights and moose, but he eventually got to the top and was so proud of himself.  His balance is amazing for his age and I don't have to worry much worry him falling.  We see his dad's genetic strength starting to show.  He does a somersault into a bridge.  (If you know wrestling, you know what I mean.)  Dad's proud. 


Climbing the Ladder of Greatness

This kid has some of the cutest faces sometimes.  I wish that I'd caught some of his schmoozers on my camera, but so far he only hands those out when he's trying to get something from mom.

He's also a big snuggler in the morning.  He's up like clock work at 7AM and comes stumbling into my room with those sleepy eyes usually asking for breakfast.   Sometimes he eats two breakfasts-one when he gets up and another with the rest of us at 8AM. 

Craig is just now getting to the place that he will allow his teeth to be brushed without a screaming fit.  I don't know what caused his dislike of getting his teeth brushed, but he'd scream every time and hold his mouth shut until...well you get the idea.  He needed a little incentive to open his mouth.  Now, it's easier, but sometimes he still needs a little convincing.

Double Fisted Teeth-brushing

I have had fun doing some preschool things with Natalie this fall and Craig always jumps in and wants to participate too.  It's interesting what he picks up.  He's learning his colors well and can count to 10.  He is just a joy.  He wears me out sometimes with wanting to cling like a monkey, but I wouldn't trade all his boyishness for anything. 

We love you Craig and will be there all the way as you grow into a BIGGER BOY!

It's About Time...

My husband has been bugging me about getting a "family" post on here so here are a few pictures of life since August.  

Natalie and Craig checked out the "digger" at the school one day.  Craig is facinated with all things mechanical and would love to have had a ride.

We didn't get out to pick blueberries this year.  Because we had such a cold summer the blueberries were weeks behind and we weren't able to coordinate the 60-90 mile trip to pick berries with a hunting trip.  We are out for the year which is a bummer because we all love our blueberry pancakes.  Instead we picked some lowbush cranberries.  Heidi and Jessica even got a chance to earn some money picking some for a local dear friend of ours. 

Hunting this fall has been all of frustrating.  Tim went out moose hunting on three different attempts but was met with roadblocks each time.  He's also been out caribou hunting a handful of times with no success.  From medical problems to boat accidents to frustration from other hunters it just wasn't meant to be.  Hunting in Alaska has taken a different shape in the past 10 years.  (But that's a whole other blog post)  Thankfully three different people shared their caribou harvest with us and we were able to get some burger.  The kids always love to watch the "snakes" of burger come out of the grinder as we grind the meat.  They all pitch in with the packaging too.  This year Jessica enjoyed labeling all the packages while Craig got his hands dirty filling bags.

You never know how you'll see Jess coming toward you these days.  She does cartwheels everywhere!  She does a cartwheel from the floor up onto her bed.  I think she may have even tried them going down the stairs.  She would love being in a gymnastics program, but unfortunately we just don't live in the right environment for that.

Jess and her dad went caribou hunting this fall.  This was a promise fulfilled from a year ago.  Jessie still remembers back to the time when Tim took Heidi and her hunting while I took Natalie to Seattle to have her G-tube removed in 2009.  They got a moose and a bear.  It must have made Jessica a forever hunter.  Last Fall, Tim had said something about taking Jess caribou hunting.  It didn't happen.  So this Fall, Tim took her.  It was an unsuccessful day but hopefully good for Father/Daughter bonding.

Our camping this year wasn't very remote.  We had a campfire in our back yard and camped a couple of nights at Grandpa's farm while baling hay this summer.  The kids love a campfire and as Heidi says, "Campfire popcorn is the best!"

Both girls are playing Little Dribblers basketball again this year.  Jess loves it.  Her size might be small, but she is a very good defenseman and loves to steal the ball.



Jess has finally gotten her top front teeth.  She went toothless for about 8 months because she just had to get those wiggly teeth out last winter.  It gives her a new look as a second grader.