Saturday, August 30, 2008

Tiger says "Roar!"

Rog and I took Luke to the zoo yesterday, his first time! For most of the afternoon, the big hit was the Puffins (Luke called them "quack quacks"), not even showing as much interest in the walruses or monkeys! The puffins were quickly forgotten, however, when we came to the tigers ("Cat ... roar!" Luke would say). Any animal we saw after the tigers I fear was a disappointment to Luke. And as first-time parents are wont to do, we stopped in the gift shop on the way out to purchase a tiger for Luke to take home:

Here are a couple more pictures from our big adventure:

Wednesday, August 27, 2008

Team Luke is lacing up it's shoes: Join us!

October 4, 2008
American Heart Association Start! Heart Walk
8th Street and Pacific Avenue, Tacoma, WA

Our Goal:

  • To raise $5,000 for Congenital Heart Disease research

  • To increase awareness of congenital heart disease, which is considered to be the most common birth defect, affecting 1 in every 100 babies

  • To honor Luke, our hero fighting his congenital heart defect

Why We Are Walking:

The money that is raised each year through the Start! Heart Walk will be used to fund the valuable research, education and advocacy efforts of the American Heart Association. And without organizations like the American Heart Association advocating for people with cardiovascular disease, kids like Luke would not have such a fighting chance for a long and active life.

As little as 35 years ago, children born with a single ventricle, like Luke, would have been sent home without hope of seeing their second birthday. Because of faithful researchers, medical pioneers and fund-raisers, children with CHD can experience life in its fullness.

How You Can Help:

  • Visit Team Luke's online donation form and make a secure and tax-deductible donation today. We will be designating your donations specifically to congenital heart disease research.

  • From the above link, you can also download a printable form and mail in your donation.

  • Join our team of walkers on October 4, 2008 in downtown Tacoma. View Start! Heart Walk details and sign up here. If you are interested in joining us at the walk on October 4, please let us know by posting a comment.

Thank you!

Tuesday, August 26, 2008

Videos of Luke: Latest and Greatest

This first video showcases Luke's emerging talent for gripping story-telling. You can hear him tell Grammy and Papa how he went "all the way up" and "all the way down" at the park. More accurately: "Alldaway up" and "allaway dow". He is only 19 months after all!

This second video I love because it is just Luke. Loving his pool, loving his popsicle and pointing out any airplane that flies overhead. Listen to him tell you all about it, too!

Luke loves his matchbox cars ... here's a little glimpse of him playing with his favorite toy. You can hear him say "Go, go" before the cars go down the track.

Wednesday, August 13, 2008

One year since Bi-directional Glenn and DKS

What a difference a year makes. Cliché, I know, but sometimes a cliché just works. And it probably wouldn't be a cliché if it weren't so darn true!

August 2007August 2008

One year ago this morning, we woke up at the Silver Cloud Inn after a restless night's sleep. We had woken Luke up at midnight for one more bottle and then our alarm went off around 5:15 am. We were hoping Luke would sleep a bit longer, but once he heard mom and dad up and about, he decided he was ready to get up as well. We quickly showered and dressed and headed over to Children's to check in at the surgical desk. The hospital was quiet this early in the morning, but we were thankful to be the first case of the day. We signed Luke in and were told to wait for the anesthesiologist to come and get us. We were surrounded by friends and family in the waiting room, which made the wait a bit more bearable.

Around 7:15 we brought Luke back to another waiting area, where he would receive his ID bracelet and the anesthesiologist would talk with us about the procedure. More waiting, and each moment got more difficult as Luke became more and more hungry. We had left Luke's pacifier with the rest of our stuff (I know, rookie parent move!), so Rog went on the hunt to find it. After about 45 minutes of pacing and bouncing with Luke, he finally, thankfully fell asleep. Very similar to Luke's first surgery a few months before, we felt deep peace once we handed him over to the anesthesiologists. We could have found comfort in the expertise of the doctors, but I don't think we could have felt that kind of peace without knowing Jesus Christ. With His help, we had brought Luke to surgery as strong and healthy as he could be and now it was out of our hands. The beautiful part was there wasn't fear in this knowledge. He was completely in God's hands now and there is no place more secure.

In a bit of déjà vu fog, Rog and I left the pre-op waiting area to go pick up our pager and instructions. We met our friends and family in the large waiting area and felt so comforted by their presence. Looking back, I am surprised how much we laughed during that wait and again, how peaceful we felt. We received the typical pages (however when your pager goes off, you feel anything but typical, perhaps like your heart might need some intervention in the OR too!):

"He's under anesthesia and doing great." (Thankful he's not feeling any pain/fear)

"He's on bypass and they've started the procedure." (Praying hard for safety of his organs while on bypass)

"He's off bypass. Things are going well." (Deep breath)

"The surgeon is finished and will be ready to meet with you shortly." (Sigh of relief, gearing up to see our sweet boy).

Dr. Cohen told us everything went great, as expected. The only thing that was a little strange to him was that his atrial septectomy done previously had scarred down quite a bit so he had to cut away that scar tissue to open the hole up again. He had never seen that before in such a short time and it would need to be monitored by Dr. Stefanelli. If that happened again, they would possibly have to go in and balloon open that hole. Other than that, Dr. Cohen was pleased with the outcome and told us we'd get another page shortly when we could see Luke.

One of the many blessings of the day came in the form of Luke's post-op nurse, Carlotta. She was the first to care for Luke post-op back in February and was one of our favorites. God was showing us how His hand was (and is and always will be) in the smallest and largest details. Another blessing was seeing how Luke had graduated to a "big boy" hospital crib and how much stronger he looked this time around. No more chicken legs on this boy! Carlotta said she hardly recognized him and thought he looked fantastic and strong. He was designated "the bruiser" in the CICU. The only other major difference in how he looked this time was the addition of two more chest tubes. After spending a few hours telling our son how much we loved him and how proud we were of him, Rog and I headed back to the Silver Cloud for a late dinner and to try and get a good night's sleep, confident in his care by the CICU nurses and docs.

I think of all the heart babies in the hospital right now, recovering from heart surgeries and I ask the Lord to bless them and their families. I pray especially for little Elaina, continuing her fight to recover after 2 months in the PICU; and for baby Johnathan who will undergo the Glenn on August 18th; and for baby Jack, just one week old and recovering beautifully from the Norwood.

Some trust in chariots and some in horses,
but we trust in the name of the LORD our God.

—Psalm 20:7

If you want to pray for lots of little heart kiddo's, here's a link that lists their blogs:

Monday, August 11, 2008

Bye-bye BaBa?

I had to laugh walking out of our dietician appointment on Friday. Our son, who for over a year of his life wanted very little to do with his bottle, forcing his mom and dad to come up with some creative ways to get those important calories into his tummy, now finds great comfort and friendship in that plastic 6 ounce container. "BaBa" is his code word for "I'm ready for nap/bed/cuddle time." As his mama, I have loved seeing him grow attached to his bottle, mainly because it highlights God's faithful presence in our travels from worry, feeding tubes, counting and charting cc's and waking Luke three times a night to eat, to feeding time being a process of nourishment, trust and enjoyment. I can't say I never allow fearful thoughts to creep in — Why wasn't he hungry today? Will he stop gaining weight? — but those thoughts are no longer the norm. I was able to tell Judy, our dietician, yesterday how much I appreciate her walking us through this process, continually urging me to trust that Luke knows what and how much he needs.

All that to say that Judy does want us to begin transitioning his two daytime bottles into a sippy cup. Luke does great with cups at meals, but I have been hesitant to wean his bottles at morning naptime and afternoon quiet time. For some reason, I feel like that 8-10 ounces of milk mixed with Pediasure during the day is a safety net of calories in case he doesn't eat as well at meals. I mentioned earlier that I still let fearful thoughts creep in now and then, right? Judy's rationale is that she has seen too many toddlers refuse to drink milk in anything but their bottle. She is okay with him keeping his bottle first thing in the morning and right before bed (phew!) so we will slowly (can I put this off until Thanksgiving?) try to meet this new challenge. I have to remember, Luke has consistently proven to us how well he adapts to these transitions. Much better than his mama, that's for sure!

The rest of our time with Judy was great. I got a lot of questions answered and she was again so proud of how good he looks and how well he's doing. He weighed in at exactly 23 pounds (11th percentile) and measured 30.5 inches (10th percentile). His weight to length ratio is about 55 percent, so she wants us to back off the Pediasure a bit. Instead of mixing 3 parts Pediasure with 1 part whole milk, we'll reverse that recipe, so Luke will be getting mostly whole milk.

Luke: February 2008
Luke at 13 months feeding himself prunes...I'm pretty sure some got in his mouth
I am so grateful to God for giving us this resource in Judy. We don't see her again for 3 months and I am sad to say that I think she'll be discharging us soon. I just hope she realizes how valuable her knowledge is to families like ours. Thank you, Judy!

Looking forward ...

One of my favorite things these days is to watch how Luke interprets his world. Watching his brain work to solve problems is absolutely fascinating! I look forward to when Luke can talk and tell me more fully how he is processing information/experiences. This is what I think his conversations will be like:

"Our day-care center spent time helping the kids memorize their home addresses. My daughter, who was in my class, had her street name down, but couldn't remember the house number.

'If our house is on fire and you call 911,' I asked, 'how will the firefighters know where to go?'

She had a plan: 'I'll tell them to go to South 14th Street and look for the house that's on fire.'"