Not just one week of the year

I guess it is fitting that we celebrated Congenital Heart Defect Awareness Week (made official by Washington State Governor Jay Inslee!) with a drop-in to cardiology, two trips to urgent care and a long afternoon in the ER. After six solid days of coughing, three missed school days and nights of restless sleep, it was time to take him to the doctor. We had battled this cough over Christmas, and I had stopped by our cardiology office to have them listen to his lungs, so we were pretty sure this was something we could handle at home. Luke just coughs when he gets an upper respiratory virus. And coughs, and coughs. But Wednesday, I could just tell he was feeling even worse than he had. He had those sick eyes we moms all know too well.

Lots of movies and shows last week!

With his sats hovering around 72-75% at the peds office Wednesday afternoon, the doc ordered a chest x-ray just to make sure she wasn't missing something. Thankfully, the chest x-ray was clear, so we headed home (with a heart child, you live with the reality that anytime your child is sick, it is a very real possibility you could be admitted to the hospital) with a prescription for Prednisone in hand.

After two days on the steroid and no improvement in the cough, we were discouraged, but still not overly concerned. Until Friday, when Luke woke up crying out in pain in the middle of the night, sobbing because his ear hurt so much. We knew we had to go back to urgent care Saturday morning to get an antibiotic for his ear infection.

Waiting at urgent care for the results of his RSV test.

Well.

It wasn't quite that simple, which is so often the case with a heart child. The doc we saw (a good reminder to always see your child's pediatrician if at all possible!) didn't like Luke's elevated white blood cell count and fever cycle. Along with the duration of his cough, he felt very strongly we needed to go to our local ER. My gut was telling me he was overreacting, but at that point, when a doctor is strongly urging you in that direction, what do you do? You go!

Several hours and another chest x-ray later, we were sent home with ear drops and a prescription for Amoxicillin. I'm guessing a $1,500 bottle of Amoxicillin.

As frustrating as the day was, both Roger and I agreed we'd rather doctors err on the side of caution when it comes to our child. We'd rather spend an unnecessary afternoon in the ER than have something go terribly wrong at home.

Luke earned his Command Ship Chima lego after his hospital visit.

It's just been one of those weeks where the reality of Luke's heart condition has knocked me down a bit. My Facebook feed is full of CHD Awareness buttons, pictures of beautiful heart babies, and pleas for more funding for this invisible disease. I'm so glad there are so many passionate moms and dads out there working wholeheartedly to raise awareness of this terrible disease. The #1 most common birth defect.

How could congenital heart defects be the most common birth defect? In my experience, most people I tell are shocked by this statistic. I know heart defects were the farthest thing from my mind early in my pregnancy with Luke. I worried about cleft palate and Down Syndrome, but not a heart defect. August 19, 2006 set my husband and I on a path we never expected. A whole world was soon to open up to us; a world of feeding tubes, oxygen saturations, weight gain struggles, cardiac ICU's, echocardiograms, heart failure, medications and EKG's.

I remember meeting with Luke's heart surgeon before he was born at Seattle Children's Hospital. I don't remember everything we discussed but I vividly remember being stunned that my child may actually be blue. I was that unaware of what a heart defect could mean. I can't imagine what Dr. Cohen thought when I repeated, "You mean he might look blue?"

The reason so many people are in the dark about the prevalence of heart defects is that, often, blue-tinged fingertips and toes are the only clue something is wrong with the child. Even though 50% of children born with a heart defect will require an invasive heart surgery at some point in their life, their "zipper" is most often hidden beneath their clothes. A little child's head made bald by cancer is horrifying. A little child's chest sawed open is as horrifying. But CHD research is severely underfunded and talked about even less.

"In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD." —1in100.org

 Any chance I get I share Luke's story in the hopes that awareness brings innovation in the heartland.

I hold so much hope for these heart kiddo's. For goodness sakes, they are — right now — able to create beating heart tissue from your skin cells! But just this week, three heart babies I know of passed away. I think about how far we have to go to find an actual and true cure for congenital heart defects.

I have been asked countless times if Luke's heart will be "fixed" or "good to go" after his next surgery. It will hopefully and prayerfully be stronger, but it won't be cured. His heart will never be a "normal" heart.

As we keep the momentum going from all the awareness raised during Congenital Heart Defect Awareness Week, I wanted to add my list of ways you can help make sure kids like Luke get to live life to the fullest:

1) Donate blood: The American Red Cross website allows you to search by zip code for a blood drive near you.

2) Donate to a reputable CHD organization: All three of the below organizations specifically raise money and awareness for Congenital Heart Defects.

• Children's Heart Foundation
• Mended Little Hearts
• Adult Congenital Heart Association

3) Visit Build-a-Bear in the month of February: Build A Bear has created an opportunity for all of their guests to make a contribution to the Congenital Heart Foundation when they complete their purchase during the month of February. This is the fourth year of the partnership, and over $600,000 has been raised to support CHF.

4) Ask about your unborn baby's heart at your 20-week ultrasound: "The only thing worse than having a child with a heart defect is having a child with an undetected heart defect." We are so fortunate our sonographer didn't let us leave our appointment that day (even without being 100% sure something was wrong) without setting up an appointment for us with a pediatric cardiologist. Use this PDF to know what to ask your doctor.

Phew. That was a long update. I have had so many blog posts brewing. Hopefully this one will spark the writing muscle!

One and a what?

My girl is one and a HALF today. And long overdue for an update.

She is, in one word, a delight. In two words, she is a terrible teether.

On the delightful side, you can see from the video, she loves to sing. With intensity and purpose. And volume. And let's not leave out length. The girl also loves her some dancing. She's open to most music, but especially loves dancing to the Berenstein Bears theme song at night, on our bed, with her brother. Oh does she get excited. Even if she's nursing, she'll jump up when she hears the opening notes.

It would be hard to deny the delightfulness of Laney reading. This may be her favorite activity right now, sitting next to our big basket of books and "reading". She is a perfect mimic of her brother. The inflection, the page-turning, the enthusiasm, I tell you it's all delightful. I'm so thankful both of my kids love books.

On the not-so-delightful side of my Laney-bug is her resistance to diaper changes, cow's milk and her hair rinsed. Look out. It's such a small part of her personality, but the strong will is there, for sure. And it's magnified when she is teething. I don't recall even knowing when Luke had a new tooth break through, so this clinging/whining/hands-in-the-mouth/not-eating stuff is new for us. She has all 16 teeth now, so I'm hopeful we are done until her 2-year molars. Please?

We had her 18-month appointment today, and she her doc's most proportionate baby. Maybe in history! 50th percentile for weight (24 lbs), height (31.5") and head circumference. She's in size 4 diapers, size 5 shoes and size 18-24 month clothes. I will be so sad when she loses the chubby thighs and tummy. I think Luke will be too, since he is always telling her, "Laney! Your belly is so chubby!" Soon I'll have to talk to him about commenting on girls' figures :)

At her appointment today, she had a toe poke and three vaccines. Not one tear. I attribute this to having a brother four years her senior. She puts up a lot from him and is one tough cookie. I love how lately she's been able to really "play" with him. She would follow him to the moon. Luke is a bit obsessed with ninjas right now and has a collection of ninja weapons. Luke has some serious ninja moves, but Laney can hold her own with the nunchucks. Again, look out.

Laney is such my buddy these days. I am really treasuring having one-on-one time with her in the mornings after we drop Luke off at school. Sometimes we'll go to the Y, sometimes we'll run outside or hit Target, but a lot of times we'll get our Starbucks and just go home to play together. I keep thinking of next year, when Luke is in school full-day. We will have some serious mommy-daughter time then!

Speaking of the Y, Laney is doing fairly well in nursery-type settings. There are tears, but I've been told (at church too) that she stops almost immediately. With Luke's history and difficulty with separation anxiety, it is high priority for Roger and me to help Laney be comfortable in those types of settings.

Did someone mention delightful? Delightful is nursing my daughter in the morning and night. I never expected to still be nursing at 18 months. Everyone said she'll cue you when she's done and she just never did. And I've been okay with that. She's my baby and it's such nice snuggle time. It's a little tricky when she wants to nurse during the day, but that doesn't happen too often. Usually only when she's not feeling like herself.

Delightful is watching her language develop. The girl is talking so much! I'm not sure how many words, but she's even putting two and three together: "Yes Mom!" (usually followed by doing something I've just asked her NOT to do). "Bye Dad!", "I don't know" (all kind of smooshed together), and my personal favorite "Be by back" (Be right back). With this phrase, she'll go to another room or around the corner, just so she can come running "right back!" Another sweet one is "Bye-bye" when you lay her down in her crib at night. But wait, maybe my favorite is her "Thank you". I'm not even sure how to phonetically spell how she says it, but it's pretty amazing.

I didn't count them up, but for this girl, the delightfuls far outnumber the not-so-much's.

Happy 18 months sweetest girl.

Coexistence

There are times when I look at Laney's flawless chest and it sucks the breath right out of me. It's like a meeting of these two intense emotions that are so different it's crazy they can coexist. How, at the same time, can I feel such deep gratitude for Laney's healthy heart and also feel such sadness about what all the scar on Luke's perfect little chest means?

Maybe I don't have to reconcile those two emotions. Maybe I can just take both for what they are: two very different ways God is teaching me about His love for me.

A friend of mine posted on Facebook the other day about their great 20-week ultrasound appointment and how God was "smiling down on them" by giving them a healthy baby. I believe this to be true. I believe the Bible when it says, "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." What I had to wrestle with, however, is what that meant for our family.

Was God not smiling on us when he allowed Luke's right ventricle to not form?

The more I've spun this thought in my mind, the more I hear God saying, "No!"

God knew Luke's diagnosis would be difficult for me and Roger. He knew Laney's health would be a celebration. But God does not change. That means he loved us with a perfect love when I was pregnant with Luke and his love was perfection when I was pregnant with Laney. His love just looked different.

Just like my love for my children looks different when I am praising them and when I am disciplining them. But it is still love.

It is such a lie the enemy wants us to believe, that we are displeasing to God when bad things happen. What if it's not about us? What if it's about HIM?

I'll admit my friend's comment stung for a couple of days. Not because I wasn't thrilled for her. But because that old familiar tug of "why us" tried to wiggle in and steal my joy. Six years after finding out about Luke's heart, this tug is no longer a daily battle. But I think it would be dishonest to say it's not a part of my life. I think it may always be ... and that's okay because each time I confront the ugly untruth that God fell asleep on the job, I learn a little more about what is true: "See what kind of love the Father has given to us, that we should be called children of God; and so we are." (1 John 3:1)

Halloween, and a conference

With the news of Mia and Addy weighing on me the past few weeks, it's been hard for me to blog about the family stuff that so often is taken for granted as run-of-the-mill. When in actuality, it is precious. And as much as my heart continues to feel grief for these two families, I also know it's important to live and continuing to record that living for my family. With that said, here are some long overdue Smith updates.

Halloween

Gone are the days I can pick my son's Halloween costume for him. He's been a monkey, a skunk, a dragon and a dinosaur, but this year it was completely his choice. And he was the happiest teenage mutant ninja turtle the sewers had ever seen. Luke is at that age where a costume isn't really a costume, it's a change of persona. He kept making sure that "Nobody can tell it's me under here, right?"

Gone also are the days of me and him holding hands to each door. He was off with his neighbor friends the minute we stepped outside.

We live in a small neighborhood, just 18 homes. So once we made the rounds here, Roger and Luke headed to a larger neighborhood across the street to continue the candy haul. Laney and I were content to call it a night. She may have been an owl, but this girl was ready for her bed by 7:30 as usual!

Halloween night was a "hoot" for all of us.

Halloween day, however, I could've skipped right over. Every other Wednesday Luke doesn't have school, so it was a looong day of "How much longer?" whines.

Here's my ninja boy in all his green glory.

And some more pictures of the cutest owl the forest ever did see:

I was looking at pictures on my mom's fridge the other night and there is one of Luke from this past Christmas and I couldn't believe how different he looked to me even from nine months ago. He really is growing up, both in looks and behavior. I feel like he's lost the last of his "baby" face. He is becoming more and more independent and I am having a hard time believing he has two months of kindergarten under his belt.

Parent-Teacher Conferences

As a fifth grade teacher, my husband has sat down at conference time with hundreds and hundreds of parents. But this was the first time on the "other side of the table" for him. We were excited to hear how Luke was doing beyond his daily "green stars". Each day, the kids color their star chart green, yellow, or red. The teacher will send home a comment if the child has had a "yellow" or "red" day.

Out of 26 assessed areas, Luke "passed" 20. And the six areas where improvement were encouraged were not academic. Nope. They had to do with being a bit too chatty and social. Too social! Considering Luke was pretty much isolated his first two and a half years of life, this is a problem we celebrate! How much did I worry about Luke not being exposed to nursery-type settings his first few years? I'm pretty sure God, as our Creator, knew we worrisome humans needed specific instructions regarding the pointlessness of worry: "Who of you by worrying can add a single hour to his life?" (Matthew 6:27)

So my little social butterfly tends to rush through his independent work so he can get to the social activities. Or, he's busy socializing and then has to rush to get his worksheet done.

We love that Luke loves his friends. Both Roger and I were shy in elementary school (me painfully so), so it's important to us to encourage his need for socializing. We just want him socializing at the proper times in school. Recess, activity center ... chat away! Reading groups, rug time ... Keep the chatting to a minimum.

Mrs. Suther was very pleased with Luke's reading and math skills. "Above and beyond" the standard at this point in the year were her words. She is not an effusive teacher, but she did let us know that Luke is doing great in her class and she would have trouble picking out the "heart kid" if she didn't know different. He loves music class and he loves library. He loves riding the bus home each day. Coloring? Not his fave.

I feel blessed beyond belief that Luke is thriving in school. That we are able to have a "typical" parent-teacher conference about him. Even that we get to discipline the rough edges. That we get to organize play dates for his social little heart and pack his backpack every morning. That we get to battle the after-school grumps and help him with his "homework."

"In every thing give thanks: for this is the will of God in Christ Jesus concerning you." (1 Thessalonians 5:18)

We live right across the street - Mia McDonald

Many of you mourn with me this week over the news of Mia. I know I'm still in shock. My heart hurts so much for this family we know and love. I met Mimi through our local YMCA, when, four years ago, the staff was holding a bake sale to raise money for this precious little girl waiting for a new heart. I was immediately drawn to her picture on the poster board and found out Mimi had started a blog to keep people updated on baby Mia. I commented on her blog, sharing with her about Luke's heart, and we met soon after at a support group meeting at Seattle Children's hospital. This is where Luke had both of his open heart surgeries and where Mia was fighting to live until a donor heart became available. There were no surgical options for Mia. She needed a new heart and soon. The doctors didn't think she would make it more than four months waiting, and at four months and one day old, the McDonald's got the call that a heart for Mia had come. With one selfless decision on the part of the donor family, this sweet girl had a second chance at life.

And life this girl did live. I'm not sure I have ever met a happier girl. Along with so many of Mimi's blog readers, I was so excited to hear Mia got to go to Disney World to meet Minnie Mouse as part of the Make-a-Wish program. I think Mia was a little excited too.

The family headed to Florida last Tuesday and by Wednesday, Mia was at the local Orlando hospital, being treated for what they thought was pneumonia. In actuality, her body was rejecting her donor heart, and they docs decided to do an emergency biopsy of her heart to find out how best to treat this rejection episode. Mia has battled rejection a couple of times, but the episodes were treated successfully with steroids and a medication regimen. She has had multiple biopsy catheterizations, but something went very wrong this time.

Her heart stopped and she came out of the cath lab on ECMO, a heart-lung life support machine.

Two days later, even though her heart had begun to recover, it was discovered that Mia had no brain activity. She would not make it.

The heart community, along with all who knew and loved the McDonald family, was left reeling. How could a seemingly healthy little girl, on the trip of a lifetime, pass away? How can a family survive something so, so terrible? How can God ask someone to bear this tragedy?

What I wish is that I could tell Mimi, "This is is why this happened. This is what God is doing." Faith is so hard when we can't see the "why".  When all we can do is cling fast and lean hard on a God Who says "He will never leave us or forsake us."

I know the Bible tells us not to be surprised by suffering and that we should be prepared to suffer for the Lord, but how do you prepare for the pain Mia's family is feeling? My heart has hurt, ached, been burdened and broken for Mimi this past week, but I can't truly understand what she's going through. What I can do is be her faith for her. To remind her that it's okay to be angry, confused, broken. To let her know that she is not alone and that God has not forsaken her.

I pray she is lifted up in the days and weeks to come by all those who love her and loved her little girl.

I pray that God will give her glimpses of His Goodness even in what I would imagine are the darkest hours of her life.

I pray that in her brokenness, God would be more real to her than ever.

I love Mimi and I loved Mia. I am so sad she is gone and so sad this family has to live life without her beauty. But I know, deep-down-know, that God will bring purpose through her death. I say that, even as our family lives right across the street from a tragedy like this. This is not a cross-country tragedy for our family. We live with the reality that Luke's most important organ is broken and that God may take our son before we're ready. I pray so hard that is not the case, but we face that possibility more than families with healthy children.

I don't begin to say I understand God's ways and why He allowed Mia to die. But as Jesus wept when His friend Lazarus died, I believe He is weeping with the McDonald family. And He is using their community to carry them. A community of people like my friend Katie, who drove 11 hours to attend Mia's service on Saturday. People like the 40 heart moms who wore red to the funeral, to show their love and support for the McDonald's.

The heart community is not one I would have volunteered to be a part of, but the people within are without compare when it comes to sharing the load.

We love you, Mia. You will always be remembered.

Katie & Maddie, Me & Luke, Susie & Teagan, Mimi & Mia