Category Archives: News

Fontan Recovery: Day 28

We are so close. So close, we can taste it.

After Maddie’s chest tube popped out on its own, we figured they would be ready to remove the last tube before the end of the week. We were right. Today, she is tube-free! Four weeks to the day they were placed in.

Zero tubes

“Now I have zero tubes?” she asked in disbelief. She couldn’t wait to tell her brothers the good news.

The doctors teased us by suggesting that she could go home as early as tomorrow, but the x-ray this afternoon showed there was too much fluid in the left pleural cavity from where the chest tube slipped out prematurely. It’s not unexpected but it is disappointing. A weekend discharge seems more likely now.

In order to prevent placing a drainage tube back into that cavity, for the next few days Maddie will wear an oxygen mask to help dilate her vascular system and will increase her diuretics. Hopefully, this combination will allow her body to reabsorb that extra fluid.  Exercise and increased respiratory activity also make a big difference.

Oxygen

She’s not so crazy about the mask but the exercise, especially in the form of tricycle riding, is just fine by her.

Finally, after 4 weeks of confinement to the hospital, Maddie was able to go outside in the warm sunshine. Spring has been more like summer these last few days (glorious!), with temperatures in the high 80’s. This little girl was as pleased as punch to cruise around the hospital playground on her Radio Flyer and soak up the heat.

(Colin’s cinematography shines as he placed it in yet another darling Google+ AutoAwesome video montage.)

We are trying so hard to be patient. Above all, we want her to be healthy when she leaves. We certainly don’t want to have to come back because of preventable complications. But we are so anxious to have her home. We’re at mile 12 of 13.1. Sometimes that last leg is the absolute hardest.

Our prayer tonight is that her pleural effusions (the drainage) will clear up enough for her to be healthy.

Thank you. Thank you to each and every one who has prayed, shed tears, and cared for this brave little girl. Your support has made all the difference. Through all of this, we have felt your love and the love of God. Heavenly Father has watched over our family and has led us by the hand to endure, even at times when it all seemed too much to bear. We head to this finish line knowing that we have been carried so much of the way.

And now we wait for Friday morning’s x-rays.

Fontan Recovery: Pacemaker Surgery Over

Before surgery

The surgery is over. The pacemaker went in without problem. Colin and I were relieved to hear her determined wails down the hallway as we walked back to our room in the ICU to see her.

I will post more later about the details. For now, know that she is okay. Maddie is a brave, strong, wonderful girl. She reminds me every day what courage means.

Thank you all for your prayers and tears and words of encouragement. Your strength lifts us up.

Sold!

our house

We bought our first house. That is to say that after 13 years of marriage we finally have a home to call our very own. At times I thought we’d never get here. But here we are, mortgage and all. It feels pretty good.

It’s a long story, as all home-buying experiences go, that I mean to share. Or maybe not. So much of it sounds like whining, when I look back on it. But sometimes it’s good to see that while it felt like a rotten, eternal state of being during the thick of the trial, it was actually quite short and filled with blessings. A perspective I hope to remember the next time I’m facing difficulties.

This is not the house I would have picked as first choice, but I know that it’s the right house for us. We are exactly where we need to be, for now. And I really love it.

Visitors welcome.

Change

I’m going to come right out and say this: people claim that change is good, but I disagree. Change is painful.

I know this because we just moved our family of six from our beautiful home in Santa Barbara, California. That is to say completely uprooted and started over again. Without warning, we were given an opportunity to thoroughly change our lives and all our wonderful, comfortable routines and relocate to the Seattle area. And it was all decided in a matter of weeks. June 4th we had no idea and, boom, August 16th we were packing a moving truck. Life is just that quirky and wonderful and emotional sometimes.

It’s a long story that Colin told beautifully in a Sacrament Meeting talk that he gave before we left, but the gist is his company opened an office in the Seattle area with a position that he couldn’t pass up. We’d be able to actually buy a house living in the gorgeous but damp state of Washington, and we’d be closer to family and old friends, so why wouldn’t we go?

For me, that was an easy answer. I loved living in Santa Barbara. I loved the good people that I knew there. In my heart of naive hearts, I hoped we would always live there. I never wanted to go.

But after countless hours of discussion and many heartfelt prayers, the answer was clear. We needed to go. And so, we went.

My heart broke distinctly that morning I drove away.

I went to sleep the night before we left, exhausted from the rigor of packing and cleaning and crying at the goodbyes, pondering what it meant to live there for six wonderful years. When I came here I knew nothing about congenital heart defects or how strong a little girl fighting the effects can be. I didn’t know what it felt like to send a son to kindergarten only to turn around and find that he’s entering 2nd grade. I didn’t have a clue that life with twins could be so demanding, so crazy, so joyful all at the same time. When I came here I had one child. Tomorrow I leave with four. I’m not the same person I was those six years ago. Just as it should be.

I’m writing this in hindsight and so my reflection is distilled by the craze of the move and the blur of life with a full house. But the pain of the loss is easy to tap into. Most of the time, I’m just too busy to go there. A blessing, I suppose.

A few years back, I wrote about how terrible it is to be the one left behind. I know for a fact it’s true. The mover has the advantage of starting over. The one who remains feels the emptiness of the hole. But what I forgot is how much the one leaving does just that: you leave a piece of you behind. And no amount of novelty or beautiful surroundings or friendly faces can replace what you used to call home.

Did I ask for this change? Did I see it coming? Did I even want to make it? No, no, and no. But despite this, and despite the struggles I had in making my decision to go forward, I know that it was the right choice for our family. The weeks leading up to this realization were truly heartbreaking for me as I said goodbye to so many loved ones and treasured aspects of living in Santa Barbara. Because, the thing is, we had a really good life there. I guess the Lord knew that more was in store for us elsewhere.

I can’t wait to see what that is.

“God, be with you ’til we meet again,” we sang on my very last Sunday in the Goleta Valley Ward [church congregation]. All I could do was sob.

Goodbye, dear friends, dear family. Thank you for the years of love and service you’ve given to me and my family. I’m grateful for the support you’ve shown as we’ve readied ourselves for this colossal change.

On to the next phase of our lives…

Toilet Trained: Check!

Sound the trumpets! Jump for joy! Shout hallelujah! Madeline is toilet trained.

Let me tell you, though, it was not easy.

We decided that we needed to give her a deadline. Once she reached a certain date on the calendar, that was it. No more diapers. We told her it would be after I finished my triathlon.

We knew she was physically ready. She was just being stubborn about it. She was still refusing to go #2 on the pot. We reminded her she was not a baby anymore and she didn’t need diapers to poop. She repeated that phrase many times, probably trying to believe it’s truthfulness.

With the promise of as many sticks of gum as deposits in the porcelain bowl, a party with the cake of her choice, viewing Yogi Bear, and pretty much anything under the sun that she wanted, we set out for the challenge.

It was an epic battle.

We had a poop showdown on Sunday afternoon. She sat there, on the seat, for over an hour crying and holding it in just because she didn’t want to. Finally, when she could hold it no longer, she gave in. We cheered! We promised to hold the celebratory party the next night for Family Home Evening.

Monday came and she still refused to go on her own. She finally sat down after many attempts to get her in the bathroom and proceeded to scream for another hour. It didn’t matter that she’d already done it. She flat out refused again.

But the pendulum always swings back.

When Colin mentioned that he would take her to 7-11 to pick out a candy if she could use the toilet without crying, it must have been all the motivation she needed. Tuesday morning, while I was in the shower even, she went all by herself into the bathroom, did her business, and calmly told me she was done. No crying. Not even a whine. We all cheered.

A few nighttime accidents later, she is completely trained, though I’m not kidding myself that I’ve done the last load of soiled sheets. But she’s there. She’s really there.

And then some.

Now she likes to head to the WC three, sometimes four times a day to go poop. (Prior to this turnaround, she would usually go once or twice in diapers.) She’ll often spend several minutes at a time in there. She sometimes brings reading materials.

But I’m not complaining. She is a diaper-free and chonies-wearing girl. We’re so proud of you, Maddie!

We all had fun celebrating with you… especially eating this white cake with strawberries and cream frosting.

Two down, two to go…

Triathlon Training

Being completely healed from surgery, I figured it was high time to get back into the old running game. I hadn’t really exercised in close to a year. Nothing good was coming from that hiatus.

My friend, Esther, asked me if I wanted to participate in a Tri-for-Fun Triathlon race in June. It was the perfect incentive for getting my butt in gear.

It’s low key: 400 meter swim, 11 mile bike ride, 5k run. I’ve been training for over four weeks now, and so far so good. I wish I weren’t such a wannabe huffing and puffing down sidewalks and slowly pedaling along the roads. Even swimming isn’t as easy as it was back on the high school swim team. But I’m still going, so that’s something.

I can do this. My only goal is to complete the thing. That’s it. If I happen to cross the finish line running then more power to me. But I’ll just be glad to finish on two feet and not crawling on hands and knees.

June 16th, here I come.

Any and all triathlon advice is now being accepted.

Adoption Complete!

So many amazing things have happened in the last few weeks. Some good, some not so good. Because of that I am ridiculously behind in blogging. But I could not let any more time pass (it’s already been almost two weeks) without sharing this news: Jake and Joey are officially part of our family! The adoption is complete and we are overjoyed.

More details to come soon, I promise. In the meantime, know that we are relieved and grateful that this time has finally come.

On Adoption Day

This was a long-awaited day for our family and finally, finally it was here. We drove to the courthouse in Santa Barbara where we’d state for the record that we loved Jake and Joe with all our hearts and wanted them in our family forever. There we met our county case worker and Angels social workers. Grandma Tuki and Aunt Melissa got to join us as well.

We waited in the courtroom for a few minutes but then were escorted to the judge’s chambers. A little less formal than with Maddie’s adoption.

The judge made some remarks and then asked us to raise our hands to swear that we would tell the truth. Would we care for these boys for the rest of our lives? Oh, yes. And then some.

Then he asked for Jake and Joey to raise their hands. They were not as willing to comply, especially Joey, but I’m sure they were just as truthful.

He handed us the Adoption Order documents to sign and then it was official. They were legally part of our family. To be treated as if they were born to us with all legal rights and privileges. We wouldn’t have it any other way.

Just like on Maddie’s adoption day, the judge handed out stuffed animals to each child. All four kids walked away with teddy bears in t-shirts. They were all quite satisfied.

And then it was over. Just like that. In 20 minutes time, the State of California recognized what we already knew: We were a family.

These precious boys, Jake and Joey. We loved you from the minute you entered our home, your tiny bodies swaddled in little blankets, sleepy-eyed and so helpless. We prayed that you would stay with us forever. Our prayers were answered.

It feels good to be complete.

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Thank you to all who’ve helped us survive the unknowns and the waiting over the last year and a half. We were strengthened because of your support and prayers. And many thanks to Angels Foster Care of Santa Barbara for helping us grow our family. We are forever grateful! And lastly, thanks to Jennifer for taking these pictures so that we have a visual record of this important day!

Two-Car Family

We tried to put it off for as long as possible but life started becoming too hectic to manage with just one car. School and work and doctor appointments and other activities, sometimes all occurring at the same time, had become a juggling act we could no longer handle with sanity. It was time to take the plunge and get a second vehicle.

Oh, it hurt thinking of the extra cash we’d be shelling out for gas, insurance, and monthly payments, but the expense would be worth the convenience. Plus this way Colin would be able to reduce his commute time by 50 minutes each day since he’d no longer have to ride his bike. Then he could go back to exercising the way he really enjoys: playing soccer twice a week. You can’t argue that kind of logic.

Colin researched and researched and decided on a couple of options. Thanks to some killer deals and some good wheeling and dealing, he drove away with this 2012 Toyota Camry and a lease that’s almost as cheap as the car payments for my very first vehicle back in 1994.

We’ve come a long way from our car-less days in Chicago, which we sometimes miss for how much money we saved. But I have to say, when Colin walks in the door 25 minutes earlier than he used to and I’m able to finish making dinner without two babies hanging on my legs screaming, I’m glad to be spending the extra money. This car has already been a tremendous help. I’m just grateful we had the means to do it. What a blessing for our family.