No Right Click

Monday, December 30, 2013

Faux Hawks and Snakeskin

Because doesn't every little girl need a faux hawk, snakeskin leggings, and Hollywood sunglasses after her bath? ;)

Wednesday, December 25, 2013

The Weary World Rejoices

This Christmas finds us very thankful for two little blessings playing on our living room floor.  We started praying in April that Noah and Nora would be home by Christmas, and God in His grace brought them home by Thanksgiving.  When we were in the hospital last week because of Noah experiencing some heart failure, we weren't sure if we would be home by Christmas.  But once again, God was faithful and stabilized our little guys heart (you know, by using our amazing doctors, nurses, and meds :)).

My heart aches for the parents with children in Russia trapped in orphanages because of the adoption ban.  These parents have longed and prayed for their little ones to be home for Christmas, just like us.  Many even met their little ones.  We're still praying that God will break down those doors, but that doesn't take away the heartache those couples feel this Christmas.

It's a challenge to draw my little ones closer, a reminder that every giggle- even every cry- is a privilege to hear.    

And as his Daddy throws Noah up in the air and I hear his giggles coming from the living room, my heart feels a little weary even while filled with gratitude for these sweet sounds and this immeasurable gift.  I am aware that this may be Noah's first and last Christmas with us.  We don't know what the future holds for his heart.  We don't know if surgery will be successful.  I don't like to think about it.  Most of the time it doesn't even feel real when we look at our silly boy.  How could his heart be sick?    

But when we feel weary, we find strength in God's joy.  Knowing that He can look at all this heartache and be characterized by joy.  He looks at all the broken things- the parents saying goodbye to their children, parents longing for children a world away and having no way to get to them because of one man's decisions, spouses splitting apart, the hurting and lonely hearts, all the brokenness- and He can have joy.  No doubt these things break His own heart, but He can see the much bigger picture.  He knows the final outcome, the happy ending.  He knows that Love wins.  He knows how it's all going to work together for good, even when it doesn't look that way now.  And how it's all working together for good in this very instance because Love already won.

And isn't this all a reminder of how this world isn't really our home?  Of how, like the faithful in Hebrews 11, we are longing for a better country- a heavenly country, our real home.

But right now, to me, Heaven feels like the life of a little boy. That's the deepest longing of my heart right now.

 I know it's so much bigger than that, but that's where my heart is at right now.  I love that we have a Savior who wants us wherever we're at right now and frees us to be honest with Him.

This tiny five and a half year old boy is a daily reminder of why our Jesus came- to heal broken hearts, to heal a world broken by rebellion, to make all the wrong in the world right again.  Noah's heart is a reminder that this isn't the way things are supposed to be.  Hearts are supposed to work correctly.  Parents aren't supposed to have to make the kind of decisions that could change their world forever.

But Jesus is making all things new.  He's making the whole world right again.  He's preparing a home for us where goodbyes will no longer have to be a part of our language.  And that's why our weary hearts can rejoice this Christmas.  It's what gives us hope for the future.

We're moving forward in faith that our sweet little guy will be with us for many, many years and many, many Christmases.  We're working on physical therapy in hopes that he will walk one day, doing occupational therapy in hopes that he will feed himself one day, and planning what to get him for his birthday in hopes that we will be celebrating together .  And whenever the weariness sets in, we're working hard to set our eyes on the Lord, on His joy.      

Tuesday, December 10, 2013

Noah's Heart

Yesterday Noah got a heart catheter done.  Daddy finally got to see what a rockstar Noah is at the hospital!  He did so well for the whole 13 or so hours we were there.  He has also made a few nurse girlfriends just in the three visits we've had at CHOP. ;)

Nora spent the whole day with us in the hospital, too, and was a rockstar in her own right.  She gave our nurse lots of laughs with her giggle fits. :)

Chillin' in her little cocoon :)

Noah's catheter was smooth.  We found out his pressure levels in his lungs are okay, which is great news!  So, the pulmonary artery band he got when he was 1 is working.

It ended up being a really long day because Noah's oxygen levels never got back up to his normal point (which is already low to begin with), so they had to monitor him for longer than planned.  They ended up letting us go home late in the evening even though his levels never went up.    

Noah is in recovery today. Poor little guy was hit hard by the cath and the meds they gave his tiny little body.  He also had an allergic reaction to something from yesterday.  And on top of that, little man is all congested.  But he's quite the trooper and is sleeping the day away.

We don't have any answers yet about whether heart surgery is possible.  Basically it will be up to the surgeon, but we are hopeful.  Since the pressure in his lungs is okay, that helps make surgery a possibility.  But his left ventricle is very small and only has 1 muscle in it (instead of the 2 muscles it is supposed to have), so the question is if his right and left ventricles are divided surgically (currently he has no walls separating the four chambers of his heart), will the left one be large enough and strong enough to pump blood?  Since this surgery is typically performed in the first 6 months of life, Noah's case is much more complex.  His oxygen rich and oxygen poor blood has been mixing in his heart for five and a half years.  Also, they don't know how his other organs will respond if they do the surgery.  The cardiologist did tell us if he does have surgery, medically it will be a high risk surgery (as in chance of death) because of his down syndrome.  We're not sure if he just has to tell us that, but either way it was definitely hard to hear.  The nurse didn't seem as worried about that but did say at conferences they teach that down syndrome cases are high risk.

So, we have some big decisions to make in the future.  Surgery is not an immediate need, though, which gives us some time.  We should find out in the next few weeks whether the surgeon is willing to perform surgery and we will go from there.

Hanging out in our hotel the night before Noah's catheter.
You can't tell from the pics, but the kids loved the hotel! 

While this is all hard for us and we've shed lots of tears just talking about it, we are amazed at God's grace in preparing Noah for all the hospital appointments.  We were worried about how all this time he will have to spend in the hospital will affect him attaching to us.  But Noah already started attaching to us what felt like pretty early on while we were still in Eastern Europe.  He expressed his needs to us and wanted to be held a lot.  He changed so quickly from the hardened, unhappy boy who didn't want to be touched we met the first time we visited the orphanage into a happier, silly boy who craves affection and attention.

One of the sweetest moments during his time in the hospital yesterday is that when I couldn't pick him up (due to all the wires attached to him), he reached over to hold my hand.  Heart melted. :)  God has worked so much in Noah's life and helped him to trust us enough that he is comfortable in a new environment, even in the hospital when we are by his side.  He lets us reassure him and comfort him.

We're thankful for how the Lord helped Noah in the hospital and we are thankful to be home now.  We're especially thankful for small gifts, like hearing Noah giggle when we walk in the house and he looks around and realizes he is back home. :)

Thank you for all of your prayers!

Saturday, December 7, 2013

Home Is Being Shared...

We made it home!  Sorry for the delays in updating.  We're home and can freely post about the kiddos now -- we just have to be alert enough to do it!  We're settling in well.  Noah sleeps through the night, and Nora, well, she's doing great at letting us know what she needs, even in the middle of the night... As for right now the biggest thing on the radar is Noah's heart.  We discovered here at home that he has a serious heart defect that should have been corrected when he was about 6 months old, but wasn't.  Monday we go in for a catheter to get more information on the possibility of surgery.  In the meanwhile Spurgeon's words have been a great comfort: 

“As for His failing you, never dream of it -- hate the thought of it. The God who has been sufficient until now, should be trusted to the end.”