Thursday, December 31, 2009

Why was this man born blind?

If you could have glimpsed into my heart these past few days the emotion you would have seen first and foremost was anger. I've been plain old mad at disease, specifically congenital heart disease. I'm mad that so many children are asked to endure difficult and complex surgeries; mad that medical science can't fix every child's heart; mad that Cutler passed away; mad that Maddie passed away; mad that the Mary Bridge PICU is FULL of heart babies.

I've been like Jesus' disciples in John chapter 9, trying to find the fairness in it all. In their lack of understanding, they ask Jesus, "Rabbi, who sinned, this man or his parents, that he was born blind?"

Jesus' response to his followers has stripped me of much of my anger. "'Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.'"

How many times have I said how thankful I am that God is using Luke's unfolding story to draw our family and others to Him? How can I let my anger overwhelm my faith when God has given us this incredible purpose? Like I'm sure the blind man didn't love being blind, I don't think God expects me to love heart defects, but He does expect me to love Him. And that means choosing sight — seeing how God is working for good — instead of blind anger.

Although my anger is less potent, I am still incredibly sad for the families who have lost their children. But sadness can glorify God, too. It can make us all the more dependent on the True Comforter and all the more anxious to spend forever with Him in Heaven.

Tuesday, December 29, 2009

Baby Cutler

Baby Cutler went to Heaven tonight after fighting hard for nine months against his congenital heart defect. I met Cutler's mom and dad through our local Mended Little Hearts group and got to visit with them several times over the last week when I was visiting little Tiernan at Mary Bridge. He was the most beautiful little boy; to call him a hero is an understatement.

Thank you, Lord, for the promise and hope of Heaven. And be near to the Smith family.

Wednesday, December 16, 2009

Deck down the halls ...

Luke has learned the first verse of "Deck the Halls" (which he calls "Deck Down the Halls") and wanted to share it with the blog world (okay, his mama did. But you'll see why when you watch it).


Merry Christmas Everyone!

video

Tuesday, December 15, 2009

Details, details

When I posted on Friday, I was pretty focused on the switch-a-roo of the Fontan timeline and didn't get a chance to write down the details of the day. And I couldn't let the opportunity pass to share about how GREAT Luke did at the appointment - prayers were answered!

We got to the clinic a little early as I was hoping Luke could play a bit in the office and get comfortable before being called back. He may have gotten a bit too comfortable as before I knew it he was walking up and down the hallways saying, "I'm looking for Dr. Chris. Where's Dr. Chris?" The NWCHC staff is so gracious and let Luke walk back to "Dr. Chris's" office and say hello to him. I'm so glad Dr. Stefanelli has no other patients, at least not in Luke's world.

When we got back to the exam room, Luke began getting a little whiny about the EKG. "I'm not ready for the EKG. I don't want to do that." It was so interesting to me that that is what he chose to focus his anxiety on. We held off on that and started instead with weight, height and sat's. Everything Luke had to do, Thomas the Train would do first. Again, thank you nurses for accommodating us! We headed back to the room and Luke started in again on not wanting the EKG. It goes to show that it never hurts to ask — Dr. S. was fine with us skipping that dumb ol' EKG today.

It was the first appointment that I can remember where Luke not only had no fear of Dr. Stefanelli, but couldn't get enough of him. He continually asked if we could go find him. I think Dr. S. bumped up even more on Luke's fan-list when he showed him how to "ride" his swivel chair.

The echo was next on the docket and as much as I didn't want to pull out the mimi (pacifier), I did. And boy, it worked wonders. He laid back and watched Cars as calm as could be. Even getting those nasty aorta pictures way up on the neck didn't phase him. He didn't love the lower heart view which is right at that base of your sternum, but we managed for a short bit.

Dr. S. came in to discuss the echo and Luke kept trying to go out the door into the hall. After the third attempt at keeping him in the room, the nurses said, "Don't worry. We've got him!" Ah, being able to listen to the cardiologist without reining in a two-year old. What a luxury!

Like I posted before, Dr. S. was thrilled with Luke's echo: ASD wide open, Glenn site wide open, function great. He did note one thing he is watching, although he quickly clarified he wasn't categorizing it as a "worry", just a "watch". Luke has a bit of turbulence and "swerve" in his descending aorta and possibly some velocity pressure difference. It is not negatively impacting Luke, but it is something that could possibly need ballooning during his pre-Fontan cath. He said if Luke's heart was normal, he wouldn't think twice about intervening, but because we expect more from Luke's heart, he wants to give it every advantage he can.

I was a little nervous to see what Luke was up to (whatever it was, he was quiet!) and when we came out of the exam room, we see him sitting in the nurse's chair typing away on her keyboard. "I'm checking my email! I'm working!" he exclaims.

We'll be looking for his check in the mail.



God, doing his God thing, has begun to change my perspective on the timing of Luke's Fontan. Through His Word and other people, He has been bringing to mind the positives of waiting an extra year. Our prayer as a family has always been, and will continue to be, that Luke's Fontan is in His perfect time, not ours. Far and away the biggest positive to this turn of events is that it once again forces Rog and me to lift our eyes to the Lord and to cling to His sovereignty.

Friday, December 11, 2009

Cardiology appointment

God, the one and only —
I'll wait as long as he says.
Everything I hope for comes from him,
so why not?
He's solid rock under my feet,
breathing room for my soul,
An impregnable castle:
I'm set for life.
— Psalm 62:5, The Message

I tried so hard to keep the possibility in my brain that the Fontan might be pushed to the summer after next. I really did. But when Dr. Stefanelli said those words today, I was jarred. My thoughts went something like this: "But I don't want to wait another year. I want to be done with this stage." Thankfully, God immediately pointed out that this entire journey is not about me. (Did you notice how many "I's" were in that thought sequence? Yeah, me too). Based on my initial reaction, you'd think it was me undergoing open-heart surgery!

Dr. Stefanelli feels that with how well Luke is tolerating his current physiology coupled with the fact that he won't be quite 15 kilo's by this summer, he can't warrant pushing Dr. Cohen to do the Fontan on the earlier side. If Luke was showing him any signs of needing help with his heart function it would be a different story, but he's just not. His echo was fantastic, his sats are exactly where he'd like them at 86-87%, blood pressure normal, not to mention that he's growing and thriving and energetic.

But just because I can see the rationale for the new timing doesn't mean it's easy to swallow. We're going to have to sit with this one for a few days because at this moment I'm not even sure how to make that shift in my head and heart.

In the meantime I will do the following: Enjoy my son, give thanks for his health, and "wait as long as He says" because "Everything I hope for comes from Him."

Monday, December 7, 2009

Practicing and Praying

Our six-month follow-up with Dr. Stefanelli is this Friday, the 11th. Beyond the typical worries about Luke's heart health comes an additional worry this time: Will Luke cooperate during this long appointment? His doctor anxiety has sky-rocketed the past couple of months due to, I'm sure, three flu shots in two months. At his dietitian's appointment last month, you would have thought he was getting a tooth pulled — without Novocaine! — rather than getting weighed and measured.

In anticipation of Luke's anxiety during the appointment, Rog and I rigged up some supplies to play "EKG" and "Echo" with his stuffed friends. As you can see, Luke loves to put stickers (post-it notes) and EKG wire clips (clothes pins) on all his friends to check their heart rhythm.

"Hold still, Elmo," Luke instructs.



We also have an empty roll-on deodorant bottle that we use to perform echocardiograms on Luke's friends. We are hoping and praying that this doctor play will help him feel more comfortable when it's his turn!

We are also praying for another good report from Dr. S., that Luke's heart will be strong and healthy. Will you pray the same with us? Thank you!

I love that praying for Luke's physical heart so naturally leads to praying for his spiritual heart. Last night in the car, Luke and I were listening to the Selah Christmas CD. Song number six is titled "Joy" and it is by far Luke's favorite. In what I thought was a tender moment, I told Luke how I pray that he has the joy of the Lord in his heart his entire life; that he is constantly overwhelmed with how much God loves him. I think I said a few other things and when I was done I hear this from the backseat: "Mama? Where's Costco?"

My devout boy. I think he totally got my message.

Saturday, December 5, 2009

Time to test this kid's IQ?

At not quite three, Luke can tell time.

Just this morning, he pointed to my digital bed-side clock and pronounced, "Mama! That says 'It's time for mommy to get up!'"

We are so proud.

And we will soon be looking into gifted programs.

Friday, December 4, 2009

From turkey to a half marathon with a lot of thankfulness in between

A run-down of our Thanksgiving weekend thankfulness ...

Thanksgiving Eve

1. Thankful that our family is officially H1N1 vaccinated! Luke received his booster today at Mary Bridge. By his account, "I didn't cry at all! I was so brave!" My account's a little different, but we'll go ahead and go with his.

Thanksgiving Day

1. Thankful for a delicious dinner with Nonna, Papa, Oma, Uncle Evan and Jerry. Good food and good family.

2. Thankful that my contribution to the meal was edible and thankful that my husband and son don't mind that I'm not much of a cook.

3. Thankful, so thankful, for this third Thanksgiving with our sweet, miracle boy.

Friday and Saturday

1. Thankful for our time together as a family in Leavenworth, WA. This is a small Bavarian village at the base of the Cascade Mountains, about 2 1/2 hours from our home. We checked into our hotel and walked over to the Kristkindlemarkt to make Christmas lanterns. This was a sweet little Christmas market but we didn't get much chance to walk around because of Luke's tuba phobia. I have no answers.

We ate dinner at an outdoor Bavarian grill and then walked around a bit, window shopping, purchasing a Dept. 56 village piece and getting hot cocoa at Starbucks. We spent quite a bit of time warming up in the bookstore (note to self, next time you visit a mountain village, remember to bring gloves), which ended up being Luke's favorite spot. He called it the "Leavenworth bookstore."

Even though there was no snow yet, it so much put us in the Christmas spirit. If no other Christmas traditions this year include large brass instruments, Christmas just might be Luke's favorite holiday.


2. Thankful that Luke was a much better car traveler than we expected! It helped that we had my mom's portable DVD player hooked to the back of the passenger seat.

3. Thankful for those good conversations that always seem to be sparked on car trips.

Sunday

1. Thankful for perfect marathon weather! The Seattle marathon and half marathon is always on the Sunday following Thanksgiving and more often than not will be a cold and rainy run. Not this year! 50 degrees at start time and dry.

2. Thankful for 13 miles to think about and pray for those heroes in my life: Luke, Alex, Tiernan, Maddie, Teagan, Owen, Elijah, Mia, Mirabel, Jared and others.

3. Thankful my body felt great for the 1 hour and 41 minutes of the race! I have past issues with hip and IT band problems, so I always feel especially grateful for those long runs that don't leave me hurting.

4. Thankful that I will see my dear friend Susanne again in Heaven. Susanne passed away in September of 2006, killed riding her bike to work. She and I did our first half marathon together back in 2000. Running the same streets all these years later of course brought her to mind. I miss you, Susanne.

5. Thankful my husband loves to put Christmas lights up on our house.


Phew! That is a lot of thankfulness jammed into four days. We hope you had a wonderful, joyful Thanksgiving as well.

Monday, November 30, 2009

Prayer request for Tiernan

Luke's heart buddy, Tiernan, was admitted to Mary Bridge on Friday night after being diagnosed in the ER with bacterial pneumonia. Tiernan (3 months old) has coarctation of the aorta and complete AVSD. Pneumonia is scary for any child, but particularly for a heart baby. Please pray for this sweet baby boy and that he is back home safe and sound SOON!

Friday, November 13, 2009

The right direction

We are over 28 pounds! Luke weighed 28 pounds 5 ounces at the dietician's this week. That was a gain of a little over a pound in three months. With that rate of weight gain, we are right on track to hit 31 pounds for the Fontan this summer. Good goin' little buddy!

Even as I typed the above paragraph, a little whispered warning reminded me not to think I know best when it comes to the timing of Luke's next open-heart surgery. I don't. God does. I can't get so focused on getting Luke to the Fontan next August that I lose the ability to hear what God has to say about it all! In all honesty, it would be tough for me if for some reason Luke's doctors want to push off the Fontan another year ... but this next surgery isn't about being emotionally convenient for me. It's about what what is best for Luke, to give him the best chance of a good outcome.

Lord, help me to live in the freedom that you have it all under control!

Thursday, November 5, 2009

It's a toss-up

What's scarier?
A roaring tiger...


Or Daylight Savings Time with a toddler?



Trick or Treat?

Treat: Auntie Jenny celebrated Halloween with us!


Treat: Luke discovered the delicious-ness of Twix and Milky Way's.

Trick: You mean to get this candy I have to say "Trick-or-Treat" to a complete stranger? Count me out!

Wednesday, October 28, 2009

It's different in black and white

How many times have I said the words "single ventricle" or "complex congenital heart defect" since Luke was diagnosed over three years ago? These words have become commonplace in our family and pass our lips often.

In our mailbox today was a thick packet from Seattle Children's Hospital Office of Records. I had sent in a request a few weeks ago to receive copies of Luke's medical and surgical records from his two stays at Children's. With how often I talk about or think about Luke's heart defect, it surprised me how much it shook me to see Luke's medical history in black and white. When I dug a little deeper through the layers of emotions, I think the source of my disquiet is simply this: I don't want my son to have a complex congenital heart defect. I didn't want him to have two open heart surgeries and I don't want him to have another one. I don't want his chest to be opened yet again. I don't want him to breathe hard or be limited and I don't want him to feel self-conscious of his scars. I don't want him to have uncomfortable blood draws and I don't want him to be scared of doctors.

But I have to follow those statements with this one: I know that God has been and will continue to be glorified in Luke's heart. And in the end, that's all that matters.

I remember the night before Luke's first surgery at five weeks old. A group of about 10 of us gathered around Luke's hospital crib and prayed. We beseeched God to protect Luke and to guide the surgeon. We prayed for Luke and we prayed for peace.

God was glorified.

The next day, we were paged about an hour into the operation and called down to meet with Dr. Cohen. "There's been a change of plans." What? Now that was a dreadful walk down to meet the surgeon. The news was good. Dr. Cohen didn't feel that at this time Luke needed the Damus-Kaye-Stansel. He felt his aorta was big enough to provide adequate systemic blood flow. "I would like, instead, to place a Pulmonary Artery band. This is a much less complex procedure, with less time on the by-pass machine and a quicker recovery." Roger and I, grasping hands, walked back upstairs to share the news with friends and family. Again, we circled to pray.

God was glorified.

We have been told more than once that witnessing Luke's heart journey has made them more intentional to live grateful lives and to teach their children the same.

God is glorified.

In the practical sense, I am grateful to have Luke's medical record. I think the more we parents know about our children's heart defects, the better. We can ask better questions and make better decisions. In the spiritual sense, I am grateful to have Luke's medical records because they again remind me of how big God is.

You wouldn't expect to get a chuckle reading these records, but I had to laugh at this comment on an echo report dated 8/22/2007 (9 days post-Glenn and DKS):

"Limited exam on extremely active infant." Yep, that's our Luke! He is so much more than his diagnosis, so much more than what was written in his charts in black and white.

Monday, October 26, 2009

Some is better than none!

We were able to get Luke his first H1N1 vaccine today at the Mary Bridge Immunization Clinic. On Friday they got a shipment in for high-risk kids and their siblings. Despite my begging and pleading, they wouldn't give me a dose. At least Mr. Luke has will have some immunity shortly. I was relieved to hear that kids are responding well to this first dose and although they don't have peak immunity until they receive the booster, they definitely have some antibodies building up to fight this nasty virus.

Since Luke just got the seasonal flu shot about a month ago, I was a bit at a loss on how or when to tell Luke he was getting another one today. Rog and I decided to just tell him this morning we were going to get some medicine and then see the fishies (Mary Bridge has a cool aquarium that Luke really likes). He okay'd that plan and I think it worked well to not tell him he was getting a shot. We sat down in the clinic and he immediately knew what was coming. He started to whine, but the nurse was great and FAST and I think it helped that she had him look when she was done to show him "no more pinch. Just band-aid." He cried for about 10 seconds but quickly dried his tears when I suggested we go look at the fishies. Compared to the seasonal flu shot, this was a walk in the park! And now he proudly shows his band-aid and tells people, "I was so brave! I didn't cry!"

Lord, please continue to protect our family and all the heart families from H1N1!

Wednesday, October 21, 2009

Where's mama goin'?

I love to exercise. I love to run, mostly, but really I enjoy most all activity. Circuit training, biking, elliptical, (did I mention running?). And I'm sure I would like Zumba or Spoga (what's Spoga?) if I gave them a try.

I'm thankful that Luke has learned at a young age that exercise is worthwhile and rewarding. I'm a little worried, however, that his perception of exercise leans a little on the unhealthy side considering every time I leave him he says, "Mama's going to exercise!" Or when spending the night at Nonna and Papa's a couple of weekends ago his response to "Where did Mom and Dad go?" was, you guessed it, "To exercise!"

In the spirit of his enthusiasm for exercise, I had to share this:

And just for the record, this was not my idea!

Friday, October 16, 2009

Serious business

Like all kids, Luke has many sides to his personality. But a dominant side is his serious side. Even at play, he is often focused and contemplative. We made our annual trip to the pumpkin patch this past weekend and you can see how seriously he took his "job" of picking pumpkins and putting them into our wheelbarrow.




I wonder where he got this serious nature? Couldn't be his mama ...



Not to fret, though. This kid knows how to have a good time, too. "Mama! I look like Frankie [Frankenstein]!"

Chariots, Horses and Flu Vaccines

Jennifer Knapp (when, oh when, are you going to come out with a new album?) has this great song called "In the Name" with the following as the chorus lyrics:

Some trust in chariots
But we trust in the name of the Lord our God
To each his own won't lead you home
And probably never will
I won't trust in the things I do
They will not stand, no they won't come through
So I'll trust in the name of the Lord my God


Psalm 20:7 is the source of this song's message: "Some trust in chariots and some in horses, but we trust in the name of the LORD our God."

I can honestly say I don't struggle with putting my hope and trust in chariots and horses (I've actually never even seen a chariot), so it might be easy for me to say that I fall into the latter group that puts it's trust in the name of the Lord.

But what if David had written these words instead:

"Some trust in modern medicine, but we trust in the name of the LORD our God."

or

"Some trust in their own ability and knowledge, but we trust in the name of the LORD our God."

David phrases this sentence as a very clear either/or. Am I placing my trust in God or not? Absolutely God gives us wisdom and gives our doctors wisdom, but my trust and hope cannot be put in people alone.

I got to thinking about all of this when I found myself calling our pediatrician and pediatric cardiologist, trying to figure out when and where Luke could get his H1N1 flu shot. I am fearful and anxious of the flu. I began thinking, "The sooner our family can get this vaccination, the better. THEN we'll be safe from the flu and any possible complications. THEN I won't be as anxious."

I think the psalmist (and God!) would agree this is wrong thinking.

I don't think it's wrong for me to research how to protect my son, or take all the precautionary measures that are available to him. And yes, we are going to all get the H1N1 vaccine when it becomes available here. Where I faltered, though, is in putting my hope in those things, and not God Himself. I took my eyes off the One who can calm the seas with a word. Don't you think He can calm my fears? He is the only one worthy of our absolute trust.

Wednesday, October 7, 2009

We'll start here

I have so many thoughts and stories running through my mind, but for now I thought I would just share two things.

1) I am mama to the best boy on earth:



and 2) I am wife to the best hubby on earth:

Thursday, September 17, 2009

Heart friends are the best!

Luke and his heart buddy Alex had fun playing together this morning at Alex's house. Alex's mama and I had fun chatting and watching the boys play. Okay, that's not entirely truthful. It was more that we had fun chatting while we protected Alex from Luke's wrestling moves and picked up shards of a drinking glass Luke broke.

You are the epitome of a gracious host, Dana!

Luke and Alex sharing a seat.

How sweet is Alex? He's giving Luke some love here.


Luke and Alex have very similar hearts, both diagnosed with double inlet left ventricle and both are seen at Northwest Children's Heart Center. Would you ever be able to tell these boys have had FIVE surgeries between them?

We look forward to many more play dates in the future!

Saturday, September 12, 2009

Fun, except for the drums

The Puyallup Fair opened yesterday. Three weeks of rides, scones and oh, the traffic. Don't get me wrong, I love the fair. Once. Maybe twice a year. My husband, on the other hand, could go every day. Maybe twice a day.

On opening day, you can follow a cattle drive parade into the fair for free before noon. Luke and I took advantage of their generosity, wishing it extended to ride tickets. We hit the train, the track cars (three times) and the canoes. He loved the rides, I loved watching him love them. I also loved Purell.




The fair's theme this year is, "The Big Fantastic". I like it, but Luke would like to amend it to read, "The Fair Would Be Even More Fantastic if You Eliminated the Marching Bands".

Friday, September 4, 2009

Small beans

I spent the first half of today discouraged. After another failed attempt to leave Luke in the gym nursery, I was feeling frustrated that this is not something he can do yet and ill-equipped to help him jump this hurdle. I don't know exactly why this hit me hard today. Maybe it's because I want him to be comfortable in many social settings, to be secure in new environments. More, I think it highlights for me the fact that we weren't able to do some of the more "normal" things with Luke — like putting him in the church or gym nursery — in his early life.

The first half of the day I wrestled with whether to continue to push Luke in this area with the cold and flu season approaching, and fought thoughts that he is missing important socialization skills.

Then I logged onto my computer and checked on some blog friends.

Mason's family has just learned that because of stenotic left pulmonary veins, he is not a candidate for a necessary heart transplant.

Moriah's mom and dad, after 10 months in the hospital with their daughter, were looking forward to going home next week. Now Moriah has yet another infection, this time pneumonia.

My little pity party suddenly didn't seem so inviting. So I'm leaving that party and heading home to the two-year-old miracle waiting for me there.

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!

Friday, July 17, 2009

Toasty

We've hit the 80's again this week and here's what Luke has to say about it:

"Whoa, Mama, it's toooaaasty!"

Really? Is he two or 42? Whatever age, I love this boy!

Thursday, July 16, 2009

NBC (not to be confused with the television network)


You could say two of the most important events in my life took place at NBC camps. NBC is short for Northwest Basketball Camps and is the largest overnight basketball camp in the world. My husband first attended NBC at nine years old as camper and from camper to coach to site director, he has not missed one summer since. Roger runs the Auburn, Washington site and as of this week, camp is again in full swing. It's a Sunday-Thursday overnight camp for campers aged 9-18 and Rog runs four weeks at his site.

I went to my first NBC camp when I was 14 and obsessed with basketball. I went every summer through high school, at which point I got hired as a coach at you guessed it, the Auburn site, by you guessed who, Roger.

But before the boy-meets-girl story happened, another meeting took place.

All week, I couldn't help but notice something different in my coaches. I wouldn't have been able to verbalize what was different besides saying it was something I wanted that I didn't have. I had never seen such genuine joy, joy despite circumstances.

Driving to LaGrande, Oregon, I had no idea that NBC was a Christian basketball camp, or that the gospel would be shared with all the campers. I just wanted to play hoops. Like in this instance, so much of my testimony consists of God pursuing me, placing people and circumstances in my life to draw me to Him — definitely not the other way around! On that last night of camp, after a week of being loved and encouraged by my coaches, my heart was soft and ready to meet this Jesus. I accepted Him into my life, confessed that I was a sinner, and allowed Him to make me white as snow (Isaiah 1:18).

Four years later, after graduation, I was hired to work as a coach at the newly-opened Auburn site. From the start, I had a gigantic, embarassing crush on this Roger guy (along with half the female coaches). Luckily, it turns out he had a crush on me as well! Next month, we will celebrate our 8th wedding anniversary:


So as much as we miss Daddy when he's at camp, I wouldn't want him to be anywhere else. NBC is a basketball camp, but injuries happen and kids get cut from the team. What lasts is a relationship with Jesus and learning to serve and love one another.

Wednesday, July 8, 2009

Mended Little Hearts


In May of this year, a new chapter of Mended Little Hearts was formed in the Puget Sound area. Mended Little Hearts' mission is to "inspire hope in those who care for the littlest heart patients of all" and includes group meetings, social events, hospital visits, educational and emotional resources.

This past Tuesday was the first official meeting and I would guess there were 12 families represented, so a good turnout! The hour and a half was broken up into three sections led by specialists in that particular area: Feeding issues, athletic limitations, and life after surgery.

In September the plan is for us parents to tour the cath lab and also have an echo tech talk to us about what exactly they do with that magic wand.

Next month, we'll have a MLH picnic with no agenda other than having fun and connecting with each other. Because as much as I love learning the ins and outs of my little boy's disease and how I can best advocate for him, there is something even better: being known. There is a depth of comfort found when sitting in a room with people on your right and on your left who have traversed the same valleys and peaks you have. Not the same same, of course, but the same.

I believe there is purpose in our suffering. Our suffering "produces perseverance; perseverance, character; and character, hope" (Romans 5:3). Although it may not always feel like it, our suffering never has to be futile. We have seen God do so many good things through Luke's story. We have learned perseverance and pray daily that our character would be more and more transformed so that we would be lights of hope.

Suffering purposes to change us, to draw us closer to our Lord and to see Him in a new light, as our ultimate comforter. How good God is to use our trials instead of letting them go to waste! As I sat in the Mended Little Hearts meeting, I was reminded of another purpose of suffering:

"He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us." —2 Corinthians 1:4

Whether we are giving or receiving comfort, these acts please God. I sat in the cramped room with moms and dads, all affected somehow by CHD, and received comfort from the fact that I am not alone. I hope I was also able to give comfort. A woman shared with me that she had found our blog and in reading through our story, took great comfort in seeing Luke so active and happy. Her heart baby had yet to arrive.

When I look at all God has done for us, how He's changed us, these past 3 years since Luke's diagnosis, how could I ever wish us on a different road? That's not to say I gladly accept trials. More accurately, I enter them kicking and screaming. I would have given anything for our ultrasound to have shown a four-chambered healthy baby boy's heart, but it didn't. So now what? Do I choose, in faith, to see the beauty God is producing through Luke's heart story; or do I dwell on the question, "why me?" Oh, there are moments, believe me, but God is faithful to not let me stay there.

Monday, July 6, 2009

The third of July

I'm glad I took some pictures on the Third of July, since the Fourth of July saw no camera action. Lots of other action (mainly trying to keep hot, miserable Luke not-so-hot and a little less miserable), but no pointing and shooting action.

You'll look at these pictures and wonder where it went wrong. We're still wondering! The more I think about it, the more I believe that Luke + 88 degree heat = CRANKY.

On the third, we headed up to my dad's on Lake Tapps for some swimming and good eats:


Luke wanted someone to hold his hand down the slide the first few times. After that, you couldn't stop the brave boy!




Ellie the puppy taking advantage Luke's ice cream drippings.

My sister and her boyfriend flew up from L.A. for the weekend festivities and by Sunday, everyone was chopped liver next to Auntie Jenny and Uncle Coleman.

After dinner, more trips down the slide, some frisbee-throwing and raspberry-topped brownies, we headed home to put Luke to bed. We had a lazy morning planned thinking Luke would be ready for the big 4th of July party in my mom's neighborhood.

Driving down, I pictured Luke squealing with glee as he zipped down the slip 'n slide, frolicking with the other kids at the party and happily watching the baseball game from the sidelines.

Why, oh why, do we set ourselves up with these outrageous expectations?

Luke didn't want to go near the slip 'n slide, he hated the screaming coming from the baseball field and he definitely was not into the heat.

We spent much of the evening in Nonna's house, playing with his Matchbox cars and track. Another large portion of the evening was me and Roger shadowing Luke, trying to get him to drink more and more water. (Do all heart moms worry about their heart kiddo's in the heat?)

Once it started to cool down, Luke's spirits lifted dramatically. By the end of the night, he was going strong, playing on the trampoline and chasing Papa. Rog and I on the other hand could barely keep our eyes open on the drive home. He wore us out!

After showers and jammies, we took Luke out on our upstairs porch to watch some of the fireworks in the town below us. He thought they were pretty fantastic until two ear-deafening explosions went off right across the street. He looked at us and said, "Okay, time to go in the house now!"

On Sunday, after trying to explain to Luke that he couldn't watch more fireworks, we headed back down to my mom's to get some more time in with his new best buddies, Jenny and Coleman. He, of course, was in a stellar mood, even without a nap.

Maybe next year he'll love the 4th, but even if he doesn't, hopefully I'll have learned to set aside my postcard-perfect expectations and to remember that these moments make all the hair-pulling moments worth it:

Monday, June 29, 2009

All good

I write this post with a heart full of gratitude and a body that wants to sleep! It's crazy how emotionally draining these appointments (and the time leading up to them) are.

Most telling of how well Luke is doing is that Dr. S. doesn't want to see us for ANOTHER six months.

First was the EKG, which we couldn't get last time since Luke pulled the stickers off as fast as the nurse could put them on. He still didn't love the idea of the stickers, but with the help of bubbles and lots of encouragement, we got a good reading this time around. I'm sure I've said it a hundred times here, but we LOVE the Northwest Children's Heart Care nurses. They are SO GOOD!

Luke did PERFECT for his blood pressure and his blood pressure was near perfect too. 90/60.

With sucker in hand, we walked Luke over to the weight/height/sat monitor area. It almost brought tears to my eyes seeing my baby step up on the scale and then stand against the wall for height like such a big boy. He was 26.6 pounds and 34 1/2 inches. Sat check was next and Luke was very willing to put the pulse ox on his finger after we first put the pulse ox on dinosaur's tail. Sats were 86-87!

The first reading was 71 and my stomach sunk a little, but I knew in my heart that wasn't right. After re-adjusting the pulse ox on his finger, 86 popped up and everyone liked that number better!

Next was the echo. This is always a bit of a stretch for Luke, to ask him to lie still. He is not a kid that lies around, or sits much for that matter. We'd get a minute or two of stillness out of him before he'd wriggle upright and shout, "OKAY! Time to get down!" Bubbles again came to the rescue, as did his peanut butter crackers. Thankfully, they got good pictures in a short amount of time. Function was great, mitral valve mildly leaky, but it always has been, so no concern there. Glenn and DKS sites looked clear and open, and his atrial septum was still wide open. This has been something they've watched carefully, since between his PA banding and his Glenn/DKS, that septum had narrowed significantly due to scar tissue.

The only change is that we'll increase his Enalapril dose to 2 mLs twice a day instead of 1.5 mLs.

We had talked to Luke a lot about this appointment before the big day and one of the things we mentioned was that Dr. S. would listen to his heart, just like he listens to our hearts with his toy stethoscope. I brought Luke's stethoscope today and when Dr. S. listened to Luke, Luke listened to Dr. S. A sweet moment if I ever saw one!

We talked about the timing of Luke's Fontan and Dr. S. is planning it for late next summer, as long as he hits the 30 pound mark. I really think we can get him there and we can go as late as October if he needs a little extra time. Emotionally, Dr. S. doesn't like his kids to be much older than 3 1/2 for the Fontan, and I completely agree. I wish I could set the date in stone, but then we would probably spend less time on our knees. Oh Lord, thank you for continuing to grow us in You!

I asked about this coming year, if we'll see a decline in energy, a change in color, etc. as we get closer to the next surgery. Dr. S. was confident in his response that he believes Luke will not decline before the Fontan. Because Luke is so strong and energetic now, he doesn't even think we'll see much different pre- and post-Fontan. Maybe just that his lips won't turn into blueberries when he's cold =)

As we were talking about the Fontan, he did mention again that we need to be prepared for those nasty pleural effusions. Luke has consistently struggled with effusions post-surgery and Dr. S. doesn't think this time will be any different. After the Fontan, Luke will have all passive pulmonary blood flow, so when fluid does accumulate, it is more difficult to get rid of. No, we don't like to hear that, but it does give us something very specific to pray against!

On the way to our appointment, we were listening to the hymn "It is Well with My Soul." I felt a much-needed peace, knowing that even if we didn't get the great report we did, God would be our Peace.

Thank you all for praying and checking in on us!

Saturday, June 27, 2009

Buddies

In a corner of my mind, behind thoughts of heart failure and weight gain, squished in between the worries of developmental delays and athletic limitations, was the concern that Luke would lag in social settings. We made the choice to keep Luke out of nursery-type settings and away from large groups of kids for a majority of his first 18 months. We just didn't want to risk a serious illness. We felt good about this decision, but the thought always lingered that Luke would miss out on important social skills.

I think it's time to throw that theory out the window:







Friday, June 26, 2009

This looks familiar

You know you're a first-time mom when you're surprised to find yourself watching your child re-test boundaries and limits you thought you established months ago. I have breathed sighs of relief that we're not there anymore, only to now find myself asking how we got back here.

Luke has decided he needs to double (quadruple?) check that we were serious about the limits we placed on his little world. Yes, Luke, whining is STILL not okay. No, you STILL can't stomp your feet and expect to get what you want. Crying STILL does not get you into mama's bed at night.

These two-year-olds are smart cookies. They catch us when our guards are down, thinking we are in the clear, that the terrible two's aren't so bad. Then we have to get back down to business and that is TIRING. My husband is so much better than me at consistency in discipline. He definitely is the model for our home and I am thankful we are partners in this process! Weak knees and a missing spine are exactly what a two-year-old wants, but exactly what they don't need.

One phase I am really enjoying is Luke's current love of books. I love to read. Love it and have often hoped that Luke enjoys books like I do. When I find Luke doing this ...


I know it's the perfect time for me to take a shower — one longer than 2.5 minutes.

Sometimes he likes to sit in his crib with all his books and I can hear him through the monitor "reading". He amazes me with his retention of stories! And did you know books are not just good for reading? They are also really good for hiding under and playing Luke's favorite game, "Where are you?" "Where are you?" consists of, you guessed it, Luke hiding and me looking all over the room for him. While I'm looking I usually hear a little voice giving me pointers on where to look. "Maybe he's under the chair!" "Maybe he's in the closet!"

This game would be even better if I could read while playing.

Wednesday, June 24, 2009

June 29th

Our cardiology appointment got moved to this coming Monday, the 29th. We ask for prayers for a great report, specifically:

  • Sats in the mid-80's

  • No concerning changes in Luke's echo or EKG

  • Good blood pressure

  • Luke to cooperate!


Thank you for your prayers, your friendship, your encouragement. We are so grateful for every person, near and far, who walks this road with us!

Wednesday, June 17, 2009

So it's not Coronado ...

But a beach is a beach is a beach, right? And two year old boys don't really know the difference anyway.