Thursday, August 27, 2009

Facts

A lesser-known fact about Luke ...


He's a lefty!


A more widely-known fact about Luke ...


He's a warrior and decided it was time for his inner hero to be visible to all!


Thanks, Nonna Yvonne, for the fun summer morning activity (and for taking off his clothes before embarking on this activity)!

Wednesday, August 19, 2009

What's in a name? Part II

August has never been a particularly momentous month for me. Back-to-school shopping was about the highlight.

And then a boy asked me to marry him and we said our "I do's" on August 11, 2001. Then Augusts were about celebrating anniversaries and how God was growing and stretching our marriage.

This past week marked three years since we found out about Luke's heart defect and two years since Luke's Glenn and DKS. It is likely Luke's Fontan will be next August.

You could say August is a bit more momentous for me now.

The day we found out about Luke's heart is still so vivid to me. The joyful anticipation we felt as we drove to our OB's office; the prayers we prayed for the health of this baby; the moment we heard, "I think you need to see a specialist"; the three hours we had to pass before we saw the specialist; the hope we felt that maybe, just maybe, it was the baby's positioning that caused the ultrasound tech to worry about his heart; the overwhelming blanket of disbelief and confusion thrown upon us as we heard the words "congenital heart defect" from Dr. Stefanelli.

In between our ultrasound and the appointment with Dr. Stefanelli, Roger and I drove to the waterfront to walk, pray, call our friends and family and force ourselves to eat something. We found ourselves sitting at this old wooden table, analyzing the words we heard at our appointment. The only conclusion we could come to is that we knew nothing about heart defects and we had very little information. Were we dealing with a wiggly boy who wouldn't position himself so all of his chambers were visible? Or were we dealing with an issue that would cause incompatibility with life? We had no idea.

In our deepest despair, in our darkest moment of fear, God was there, already preparing to make sweet what was bitter. That is what the name Jehovah-Rapha literally means: "The Lord Who makes bitter things sweet" (Exodus 15:26).

This picture is a little dated (Luke was just walking), but it perfectly symbolizes to me the name Jehovah-Rapha:

The table where Rog and I sat the day of our first ultrasound. How sweet the view is now from this table.

On that Friday afternoon, we didn't physically see Him, nor did we audibly hear Him, but my faith requires me to trust that He was there. This news didn't surprise Him or catch Him off-guard and He knew it would be difficult for us to bear, bitter news. But He allowed it because He can see further and clearer than we can. He sees the victory in the end.

In a way, it's like Luke's upcoming Fontan surgery. Luke doesn't know it's coming, but his parents do. We know the pain involved and we will feel it right alongside with him. But if we saved him from that pain, what good would that do? That pain will save his life.

In all honesty, my human self would love to have been spared from the pain of hearing that our baby's heart was imperfect, but in faith, I believe that God allowed this imperfection to transform our family.

Part of that transformation process has been being able to glimpse sweetness from that bitter day. Our eyes have been opened in a new way to the Goodness of God — through people we have met, stories of faith we have heard, the prayers we have prayed and seen answered, and remarkably, even through the tears we have shed.

From now on, August or not, God will continue to make good on His promise to heal those bitter things in our family's life. It is up to me to look for, and then keep my eyes on, the sweet.

Sunday, August 16, 2009

Heart-to-Heart Pool Party

The annual Seattle Children's Heart-to-Heart group pool party was held in Bellevue this afternoon at the Samena Swim Club, and besides the horrendous traffic on the way there, we had a great time (and even the traffic wasn't so bad since it gave Mimi and I more time to chat ... right, Mimi?)!

Mia's sweet mama, Mimi and I drove (with a lot of inching on I-405 thrown in) together and met up with about 15 other heart families for BBQ, fellowship and swimming. There is something about heart kids ... for one, I think they are exceptionally cute, and for another, they are the most resilient people I know. Their moms and dads are pretty great too!


Miss Maddie, Hypoplastic Right Heart. Her mama, Katie, helped organize the party. Thank you, Katie!


Sweet Mia, Heart Transplant, peeking around her mom. This girl's constant smile belies what she has gone through!


Luke and Maddie making their way to the slides. Look at that ruffle bum!


Miss Teagan, Hypoplastic Left Heart. This girl could not be more squeezable.


Mirabel Alice, Hypoplastic Left Heart. She just came home recently from the Glenn and a diaphragm plication just like Luke. Two surgeries and home in 10 days. This girl is a fighter!

See? I wasn't kidding when I say heart kiddo's are exceptionally CUTE!

Katie and Maddie, Me and Luke (we're working on his camera smile), Susie and Teagan, Mimi and Mia


Miss Judy

Luke had his 3-month check up with his dietician on Friday. I know I've said this before, but it is AMAZING how God works seemingly frustrating and negative situations for good. The only reason we got connected with Judy is because she partners with the GI doc that finally diagnosed Luke's bloody stool (sorry!) as a result of a milk protein sensitivity. About a year ago, Luke was discharged from the GI clinic, but we have continued to see Judy every few months.

Luke went from 25 pounds 14 ounces to 27 pound 2 ounces in three months. He continues to stay on the 15th percentile curve for weight but jumped to the 25th percentile for height at almost 36" tall.

Like Judy says, he's doing exactly what he's supposed to be doing. Luke will gain weight the way his body needs to whether I worry about him or not. Judy would be the first to attest to the fact that I was a worrisome mess when we first connected with her. She was actually the one to tell us Luke was ready to go without the NG. I, on the other hand, was petrified. She has seen me come a long way, to a place where I trust Luke to know what his body needs and he trusts me not to force the issue.

In the past couple of months, I felt myself starting to backtrack a bit, wanting to control Luke's intake and worrying more about his weight. I know why. We are now a year away from Luke's Fontan, which Dr. Cohen won't do unless Luke is at least 30 pounds. I shared this with Judy, that I want to just let Luke be, not have some stupid number dictate how I feel. Her response was perfect: "So, if he's not 30 pounds, then what? Can they not push the surgery off?" I answered her, no, of course they can delay the surgery, but that's not really in my plans (yes, I know how crazy that sounds as a believer in a God Who is Sovereign and wants us to live in HIS will, not our own).

I left that appointment realizing that God again is reminding me to let Him reign. His timing is perfect and it would be a waste to spend the next year fretting about Luke's weight! He is perfectly designed, he is growing and he is healthy. Let us rejoice in that and continue to trust God in the timing of Luke's surgery.

Tuesday, August 4, 2009

Auntie Jenny

Auntie Jenny is pretty hot stuff around our house. Luke attributes many of his toys (and even non-toy items like our hot-tub and vacuum cleaner) as gifts from Auntie Jen.

My sister and I are 22 months apart. We grew up on five acres of woodland with no neighbors in sight, so needless to say, we were each other's playmate and best friend.

There have been a couple of moments this past week that have caused me to reminisce more than usual about growing up on those five acres with my older sister. Jen, walk with me down memory lane!

Yesterday, Luke and I hiked back behind our house (which, believe it or not, sits on the same five acres — now developed by my dad — on which we grew up) and happened upon some early, ripe blackberries. Remember how many buckets of blackberries we would pick? Remember getting scratched up by the blackberry thorns? Your nephew thought fresh-picked blackberries were pretty fantastic as well, evidence by his purple-stained lips:



My sister and I both took gymnastics for many years. Before it became all about pressure and perfection, gymnastics was just plain fun! We would play a game on the trampoline called "P or N" ("P" for pass and "N" for no — not kidding, this is really what we called it. Please don't judge our creativity on this game's name). Basically, one person would make up a gymnastics move and then we would take turns repeating that skill until the other person gave you a "P" for doing it perfectly. You had to stay on that skill until you got a "P".

And oh, the gymnastics/dance routines we would make up in our basement.

Remember that metal bar in downstairs hallway? The one we used as a bar? How could a 24" piece of metal generate so much fun?

I know I am his mother, but look at these photos and tell me if you also think Luke has a flair for all things tumbling and flipping:

"N"


"P"

I love you, Jenny!

Monday, August 3, 2009

You may be wondering...

...how our endeavors in potty-training are going.

Take a look for yourself. I think this video says it all:

video
Apologies for the watermark and the terrible videography. When a camera is in sight, all Luke wants to do is "now look at it", which is what he's saying in the video. So I have to be quick and a little sneaky when I want to capture him on film.

Luke likes to do things in Luke's own time, on his own terms. Last night was the first time in a long while that he showed even a spark of interest in his froggy potty (when we first brought it home he peepee'd in it two days in a row, then nada). He came up with the idea of the potty on mom and dad's bed and a howling good time was had!

He's showing a lot of signs of being ready. We leave his diaper off for quite a while in the evening and even though he declines sitting on his potty, he does hold it until the moment he's in the bath or shower. Funny boy!

It looks like diapers are in our lives for a bit longer. With everything this kid has had to do, we're just fine letting him dictate the timing on this one!