One year surgery anniversary

Today I've been very emotional anytime I look at or love on my daughter.  We could not have known going into surgery how difficult recovery was going to be.  Today I want to be a little more frank than I was able to be in those moments a year ago.  We knew it was complex open heart surgery.  We knew to expect complications; we were told they would most certainly occur.  The anticipation was uncomfortable and very sad/scary for us, but those days in ICU changed us forever.

Medical PTSD is something real.  My precious girl has been through more trauma and pain than anyone should have to endure.  Kyle and I experienced PTSD (we finally realized) weeks and months after Willow's surgery.  We did not even go through the pain and hardship of it ourselves.  We sat there, helpless as our child screamed any time she was awake (which was often since she fought sedation).  Her screams of course were silenced by the tube down her throat, a very disturbing sight for anyone who hasn't seen that.  It was awful for us to witness and be completely unable to soothe her.  She had been our beloved daughter finally in our arms for only one year.  Her failed extubation traumatized us all, and watching her sink into that abyss changed me.  The medical team multiplied and came to life as the lead doctor in ICU made commands of everyone that would ultimately save Willow's life.  These scary, sudden moments happened often, but this one was different.  They asked us to quickly give her a kiss before escorting us out to reintubate her.  After watching her oxygen decline rapidly, I remember trembling and thinking, "There is no time for a kiss.  Save her life, now!"  I realized, though, why they did that.  How many times was that hurried and terrifying kiss a last kiss from parent to child?  It makes my whole body shudder still.

Those feelings that grabbed my entire body, that fear of losing her, that lack of control or ability to bring comfort- it sticks with me.  This anniversary brings it back. Weeks and months after, by God's sweet mercy and grace, my daughter was once again playing and talking and loving us, we realized that if you do not take the time to process, you can come unglued at any random moment.  Our minds had to process what we had gone through, and when we didn't spend enough time or words on it, we paid for it in random, difficult moments.  Specifically, surrounding Willow's physical safely, we became anxious and jumpy.  Willow was a little clumsy because she suddenly had 100% oxygen for the first time in her life, filling her with new energy and causing her I guess to work new muscles that needed practice.  The combination of Willow's new energy and our new fear of her getting severely ill was interesting.  We had to learn through our mistakes and give each other grace upon grace.

I would go through it a million times over for my children.  Both of my heart warriors are so incredible.  We get through what we must.  Seeing a miracle take place before my eyes gave me the deepest sense of gratitude.  My heart is content with those people that I love; I lack nothing.  I do not need anything but the Holy Spirit guiding me and transforming me.  I can relate to Paul when he says he has learned the secret of being content whether he has much or little.  

I'll never let my fears prevent me from following the prodding of my Lord and Savior.  My faith could have severely lacked in those hardest moments sharing that couch with Kyle by all those constantly beeping machines connected to my child.  It did not.  Instead what I discovered is that my God sustains beyond everything and anyone else.  When it all washes away, when fear towers over me and invades my life, God is my source of strength and love.  He is my strong tower, and today and every day I thank Him for saving Willow's life through the hands and brilliant minds of her doctors and nurses.  My kids are miracles.

I cry every time we sing this at church.  I cannot help but be transported to a year ago when I didn't know if God would answer our prayers for healing...

"You give life, You are love

You bring light to the darkness

You give hope, You restore

Every heart that is broken

Great are You, Lord

It's Your breath in our lungs

So we pour out our praise

We pour out our praise

It's Your breath in our lungs

So we pour out our praise

To You only

You give life, You are love

You bring light to the darkness

You give hope, You restore

Every heart that is broken

Great are You, Lord"

Thank You, Jesus, for filling up my kids lungs with your oxygen.  I have nothing more to ask of You, God.  You are gracious to us.  Please help me to be a faithful witness of Your love.

A special day today...

Waiting Room, Jonas Updates, & Pictures!

I wrote this to reflect while I was in the 'waiting' phase after a medical scare...

"As I wait to hear 'cancer' or 'benign', I look around and appreciate more.  I'm grateful for each loving glance and act of service from my incredible husband.  I cannot thank God enough for our families and our friends.  At the same time, I'm mad and I'm sad and mostly painfully impatient.  I feel myself slipping into despair on occasion, but my faith grabs ahold of me and doesn't let me go.  God sustains me when others don't get it.  God is my strength when I am weak."

The scare was over as quickly as it started.  Now I've been able to go about my life, loving my people fiercely and appreciating life more fully.  Not everyone gets the answer they are praying for after medical testing, and my heart goes out to those who don't.  My whole life would be turned upside down and spun around had God intended the road of a cancer fight for me.  After going through Willow's surgery, I learned to prioritize a little differently.  This event in which my loved ones rallied around me in prayer reminds me that I want to continue worrying less, loving more, and living a life that honors my Creator.

Okay, now on to some fun stuff!  I'm so behind in blogging, always!  My beautiful babies are keeping me totally busy, and now I'm back to work one night a week.

Jonas has been fake counting to three lately when playing with toys.  So like before the car goes or the ball is thrown, he says "Guh guh guh!"

He is way less urgent about his morning bottle (of formula and rice cereal).  (Although moving him to his crib recently has him crying for it in the middle of the night again.)  When we first got home, this was almost all that comforted him!  Now he can take it or leave it; I am amazed at his bravery and trust in us!

He brings us board books and gets so happy when we read them!  It's either "Wheels on the Bus", "My Car", or "I Am A Puppy."  

Willow taught him how to say "uh oh!"  It's one of the cutest things I've ever seen in my life.  Both of them.  

After I buckle him in his car seat, Kyle says he always says 'bye bye' before I can get in the front. I have heard him say bye bye, but usually after someone else says it.

Jonas always nods knowingly in response to any question.  Also, he has cracked up twice now in the middle of his sleep.

Kyle tried to get the kids to dog pile with him on me in the middle of the floor.  Jonas sat down and just started crying; he was worried about Mama!  (He also began to cry when Willow fussed at a dental appointment.  Our precious boy doesn't like seeing us struggle.)

I adore how when we come back in the room, he gets happy and excited.  This is the beginning of him understanding permanent love and what family is all about.  We always come back!  (He also gets excited when I come back from work, when 'Dada' gets home, and when we pick him up at the church nursery.  We've left him twice now for church, and he has gone straight to the toys to play both times!)

Austin's birthday, right before Geneva's arrival...

A visit from Mimi, Pop, & Aunt Kenda...

Our tshirt for Pop...

Kids went down for a nap, and once I came back downstairs and walked into the kitchen, Pip was like this!  Oh my gosh!!!  Pushed in chairs and immediate clean table from now on...

These two are pure joy...

She was pretending this was her not quite born baby cousin...

Spring is my favorite!

He snagged Willow's old Halloween costume for a minute...

Kyle is amazing and got Willow to feel like a helpful part of his feeding.  Even though he's almost 2, we consider this bottle time an important part of the day as it is formative in our bonding.

Next post... cousin love!!

Jonas-isms, etc.

Some things I want to remember about our baby boy...

*He sings four notes and wants me to parrot it back, and then we go back and forth for a while.  This happens all the time when he's playing, too.  

*He rubs his nose fiercely with his pointer finger, sometimes making a huge mess.  He also rubs in his mouth like this when he tries a new food, so we constantly wipe his hand!

*With his left hand, to sleep he sucks his pointer finger and thumb convo while pointing his pinky finger up.

*Once he gets in the mood for tickling and wrestling, he never wants to stop!  He will point to where he wants me to tickle him, move closer, or lift his shirt for me to tickle his tummy.  His joy is contagious!

*Speaking of Jonas' joy, when he thinks something is funny, he laughs with his entire body.  His arms and legs flail and he nearly falls as he cracks up.

*After his morning bottle (which is so comforting to him that he wakes earlier and earlier to get it), he uses his hands to immediately play boo in a happy stupor.

*His favorite songs so far seem to be "Let's Go Fly A Kite" (with hand motions and thanks to Willow's frequent rendition while still in China), the Mickey Mouse theme song because of Disneyland, "Let Me Be Your Teddy Bear" (because of Neese), "Jesus Loves Me" (because of a bunny he has that sings it) & "Old MacDonald."  

*He loves the game we taught him of saying Honk Honk ("gah gah") and pushing our noses or his own nose twice.

*When trying to fall asleep and on his back, he rapidly shakes his head back and forth (kind of like he's playing peekaboo with a pillow).

*He has already outgrown a lot of clothes.  I just now got rid of some of Willow's first clothes!  

*When I ask him a question, now he will look at me and nod.  Sometimes he will even say his version of "Uh huh."

*He says...

-"Mama"

-"Dada"

-"Flowa" for flower (one of Willow's first words with us, too!)

-"Guh guh" for both Jonas and Willow (although sometimes he calls Willow 'Da Da')

-"Uh!" for 'up' or for 'lets' (in Let's Go Fly A Kite)

-"Guhn ga" for thank you.

-"Uh uh" for uh oh!

-"Wa wa" for water, maybe!  (Just heard this one time.)

-"La la" or "Wi La" for Willow

Early in the mornings before Willow wakes, he pushes this stroller back and forth for forever!

This was a sweet moment.  Not all moments in this store were sweet, let's just say!

Willow actually really enjoys her calm place!

Hammock blanket!

Cool cup from bible study; she called it her Starbucks drink.

Puddle jumping...

I gave her some options on what she could do next before daddy got home.  She began repeatedly going over them and counting them like this.

Driving with Mama...

Singing on her 'stage' with her 'microphone'...

His head does this when music plays (including our kitchen timer beeping)...

Art together...

It's what we do!

He adores the dogs!

His first artwork that made our masterpiece wall (dot stickers and scribble marks)...

Central Market for a dinner & groceries night!  Jonas stares wide eyed when we go anywhere like this.  That is why cocooning at home is so helpful for kids in his position.  Once we settle down in one spot, though, he gets comfortable very quickly.  

Willow the big girl...

First time at Grandpa & Gigi's...

Every weekend (at least) we've been having some Mommy & Willow time.  This time we were at Hallmark.

"Ba!"  He's feeling cool...

Cute!

She was so proud of being able to sit on the big kid swing and use her legs to help herself go.

He liked playing in wood chips.

When taking in a lot of new sights and people, he does this sometimes.  It's so endearing!

2nd pediatrician visit.  He has gained three pounds in three weeks!  On American charts, he's in 70th and 80th percentiles for weight and height.

Kyle got inspired and created the coolest car for Willow's drive through movie day at preschool.  It was like Christmas when she woke up to this!

Sitting so close while Willow loved on her baby doll.  Jonas really loves to love on the babies, too.

Trampoline place.  Willow was so brave!  She also ran away from me when it was time to get ready to go.  That was a first, and we had several long chats later about it.