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.

Chasing the Sun

 I chased the sun into Anchorage the other night.  All the while, my heart was heavy with the unexpected tragic decline of one of my "heart" friends.  Mia McDonald was a fellow Seattle Children's patient, who received a heart transplant for her ailing heart at 4 months old.  She was a little over a half a year younger than Natalie.  A Make-a-Wish trip to Walt Disney World turn tragic as Mia, who had been doing so well, suddenly declined and was found to be in rejection of her transplanted heart.  Her family had to say good-bye to her that weekend far from their home in Utah.

 A community friend who had battled with MS for many years and recently developed cancer went to see the Lord face-to-face this weekend.  Elaine always presented herself with dignity and had a smile for those taking care of her.  She was very involved in community service.  Even as she became wheelchair bound, her focus was not on herself, but on others.

As I sat there in the solitude of an empty truck, I took in the glory of what God was painting before me.  If this was only a part of what He must be like, I couldn't imagine what it would be like to meet Him face-to-face. 

As a nurse, I get to see a lot of the "good, bad and ugly."  I can become indifferent to disease, but there are times when it is just so apparent what sin has done to our bodies.  We were made for an eternal purpose, but when sin entered into our lives, so did death. (Romans 5)  It's just ugly! 

I'm so glad that there is hope. 

If we have hoped in Christ in this life only, we are of all men most to be pitied.  But now Christ has been raised from the dead, the first fruits of those who are asleep.  For since by a man came death, by a man (Jesus) also came the resurrection of the dead.  For as in Adam all die, so also in Christ all shall be made alive...The last enemy that will be abolished is death...O Death, where is your victory?  O death, where is your sting?  The sting of death is sin and the power of sin is the law; but thanks be to God, who gives us the victory through our Lord Jesus Christ.  1Corinthians 15:19-22,26,55-58

Maybe the beauty of a sunset has been put there by our Creator to remind us to have hope.  We will experience the darkness of death, but the morning will always come with joy for those who trust the Savior, Jesus.

Bountiful Blessings

My love of gardening was cultivated by my parents who gardened ever since I remember.  My father's parents also gardened.  My most vivid memories of summers growing up included canning and freezing a myriad of fruits and vegetables.  There is nothing as satisfying as looking in your pantry or freezer and seeing all the fruits of your labors waiting to sustain you through the winter.

Gardening in the extreme North takes quite a bit more effort than gardening in Michigan.  You can't just throw a seed in the ground and expect it to produce bushels.  I've learned to savor every tomato that I can get out of my greenhouse.  I remember wishing that the green bean plants would die after picking 5-gallon buckets full in Michigan.  Now, it's only in the greenhouse that I get enough for a meal and canning.  The labor that I put into gardening seems multiplied many times compared to what I get out of it, but my attitude toward what is produced is somehow different.

Today Natalie and I went out to the garden to pick broccoli.  Natalie was very adamant about cutting the broccoli flowerettes off with a knife this time..."all by myself."  I protested at first then remembered how young Heidi was when she learned to be responsible with a knife.  After a bit of coaching (which I'm not sure she really needed) she cut the whole harvest today with a knife.  She did a really good job too.  It's so fun to see young ones get excited about working outside with their hands, but it's a bit hard to let go sometimes.

While contemplating my growing babies, I found myself reminiscing once again back to the circumstances around Natalie's birth.  Heidi was about as old as Natalie is now when Natalie was born and Jessica was Craig's age.  I remember agonizing over how my separation from them for months when Natalie was in the hospital would affect them.  I worried about Jessie who wouldn't ever talk to me on the phone.  Family members were concerned when she would play with her baby doll and talk about her dying.  Heidi would talk to me briefly on the phone, and occasionally ask about Natalie, but our conversations were short.  When Heidi and Jessica eventually joined me in Seattle a month before Natalie came home, they were cared for three different people while I was advocating for Natalie in the hospital. 

When I talk with Heidi and Jessica about their experiences when Natalie was born and in the hospital, it's only Heidi who has recognizable memories of those times and the emotions that surround it.  Jessica will remember the playground at Ronald McDonald House or Heidi's birthday party, but at three years old, she really didn't completely take in the whole concept of what was going on. 

When I think about the "labor" that went into those four to six months of my oldest girls lives (all the people who helped out, all the shuffling back and forth between baby-sitters when Tim was at work, all the Dora the Explorer that they watched while I was pumping, the long trips to Anchorage to take Natalie to her doctor's appointments, the tube feedings of their sister and the owies she had), at the time, my heart cried out that it was too much.  I worried that they would be scarred for life from the experiences they were having.  But out of all that labor of love, I've gotten two very caring daughters who love their little sister (and brother).  While they have their typical spats and girly feuds, they realize that having Natalie here with us is something special. 

As the girls get older, Heidi and Jess pick up on non-verbal cues when time approaches for Natalie's doctor's appointments or trips to Seattle for heart caths or surgery.  They "get" why mom is crying and preoccupied.  They know that Natalie is going to have another surgery sometime and I think there is an underlying concern there.  Life is normal, except when there is an appointment or trip and we are reminded once again, that Natalie is living with a very special heart that needs lots of TLC.   

So today, when it was just Natalie and I out there picking broccoli, I thanked God that we could savor such wonderful home-grown vegetables after all our labor.  And just as I savor the sweetness of a juicy-ripe tomato after all it takes to be grown, I thanked God for how sweet He can make life seem after a trial or time of testing.  I thanked Him that my children have been spared from deepest heartache and yet still learned to appreciate the value and fragileness of life.  As I put on the screen savor of my phone while I was in Seattle right after Natalie was born, "God is good!"...all the time.

Jessie Made Lunch

Jessie wanted to make lunch today!  She was really excited about it and showed us some of her creativity.  She made two varieties of cut-out sandwiches-a PBJ star with sprinkles and a man on top or a cheesy heart sandwich with a kid on top.

 The must have been yummy, because I didn't get any.  Natalie thought they were cute and Craig liked the sprinkles!

 The next step we'll have to work on with her is clean-up!

Maybe we'll have a Chopped Champion someday!

The Best Use for a 5 Gallon Bucket

What's the best use for a five gallon bucket?  Soaking your kid after he's done this...

I hope I don't have unusual kids.  They love to strip and play in the mud.  Fortunately, the girls have learned their lesson in discretion.  Their brother has yet to understand the concept.  I couldn't pass up the opportunity to share these pictures so had to do a little paint shop on them.

Mud baths are supposed to be beneficial for the skin, right?  How about a mud cake?  Will it give a nice deep internal cleansing?  It is amazing how you can go from this...

 ...to this in just a couple of dunks.

All four kids needed a hosing and I thanked the Lord for my washing machine!

I remember the days when the older two girls would be sitting in the five gallon buckets in the sunshine with their legs up in the air.  Sometimes I would think that they'd get stuck being jack-knifed in there and all, but somehow they managed to get out.  Now I only have two that fit.  They are all growing so fast!

Cameron Park Zoo



Dad pulling Natalie and our water/snacks

While in Texas, we visited Cameron Park Zoo.  With temps reaching into the 90's, we had a wagon load of water with a little room for Natalie to hop in and out of when she got tired of walking.  It worked well giving her the independence that she needed while allowing for needed breaks.

My mom and my 99 y.o. Grandma

Great Grandma came along too.  Though she walks, she also got to "ride" around the zoo and watch all the animals.


Natalie found a horse to ride.



How can ugly critters be so cute?



Jess, Nat and Heidi checking out the spots on this Cheetah

The exhibits allowed for up-front and personal interaction with the animals.

Even though there were several indoor exhibit areas, the younger kids really felt the heat. 

Natalie got a ride from Uncle Jack in the shade of his safari hat.



Craig taking a water break with Daddy.

We saw some very unique animals, birds and reptiles.

These two "love birds" just couldn't leave each other alone.

One of my favorites-the adolescent tiger that saw.  He was very quiet, but attentive.

Natalie and Grandma heading to the exit.  We had loads of fun, but it was time to go get cooled off and take a nap.