Thursday, February 26, 2009


Yesterday at Drew's school they were talking about what they wanted to be when they grow up. This is part of our conversation in the car on the way home:

Drew: Cody wants to be a doctor. A dog doctor.
Mom: Oh, a dog doctor is called a veterinarian.
D: Yeah and he wants to help dogs. And Ryan wants to be a cheffer.
M: A cheffer? Do you mean a chauffeur?
D: No, a cheffer!
M: Like someone who cooks food?
D: Yeah.
M: That's a chef. What do you want to be?
D: I want to be a worker.
M: What kind of worker?
D: I want to build tall houses.
M: Oh. That's cool. Like Bob the Builder.
D: And I want to hold signs, and put up cones.
M: OK, just like the workers on our street.
Ava: And I want to be a fixer!
M: Oh, what kind of fixer?
A: One who fixes cars.
M: That is a mechanic.
A: Yeah, and I will have a girl hammer.
D: And I will have a BIG hammer!

Friday, February 20, 2009

Today we got to play in the snow with some friends. The weather was beautiful, sunny and in the 60s, so we didn't even wear jackets. The kids had so much fun climbing the hills and sliding down on their behinds. Drew was really impressing us with his endurance and stamina to keep climbing those hills. Incredible!

Eben, Jacob and Drew ready to sled

Keilani and Ava playing in the snow



When we got back from there it was off to see the doctor again. Drew hadn't had a fever since yesterday so we weren't worried about that, but still needed to recheck his blood pressure. It was fine this time, but it worried me that the doctor still wanted to see us. It turned out he just wanted to measure it himself and say he was sorry that he missed it the other day. We did a quick check with the pulse ox, mostly for curiosity, but also to get a good baseline and it was 98%. Incredible again! If it had said that a year ago I would have thought the machine was broken. Now it's normal. It just amazes me. It does seem that Drew is having a reaction to the vaccine though. First the fever and now his arm is all red and hot where the injection was. Poor guy.

As we were on our way home from UCD we were listening to the radiothon to benefit the Children's Miracle Network and the UC Davis Children's Hospital. I have to confess that I cry every single year listening to the stories of other families who have been there. So, I called them up when we got home and made a donation. I guess you could consider it an investment. :)

And then we went to Jimboy's Tacos for dinner because they are having a promotion to benefit the hospital as well, and our heart buddy Casey is the poster child! The radiothon ends on Sunday, so everyone go to Jimboy's tomorrow and get yourself a Miracle Meal!

Drew and his buddy Casey and his buddy Jimboy

Thursday, February 19, 2009


Drew and Dr. B

Drew had his five-year check-up yesterday with our pediatrician. I love our doctors! Dr. B answered all my questions, went over all of my concerns and spent nearly an hour with us and never made me feel rushed. Drew is growing well, he is now 40 lbs 9 oz (49th percentile) and 41 inches (14th percentile) and is pretty much sticking to his own growth curve. We updated his electronic medical record as he is no longer taking any medication (!) and his hydronephrosis is considered to be resolved. We are getting another referral to PT to have them check out his orthodics. We are also going to see immunology again in the spring to see if Drew can have his live virus vaccines yet, but I'm not very hopeful about that. He did get two shots yesterday though (most kids also get their chicken pox and MMR boosters) and was very brave. They also did a hearing and vision test and he passed both of those. Yay, we're ready for kindergarten!

Today Drew had a fever, 100.8 when we took his temp and gave him some motrin, then fell asleep. That worried me, so we put a call in to the doc, and they say that kids are more reactive to the vaccines at this age than as babies, and that it is probably from that. Yesterday when we were there his blood pressure was high both times they checked it. I forgot to ask the doctor about it then and mentioned it today. They want to check him out so we're going back tomorrow.

Monday, February 16, 2009

Another Anniversary

Five years ago today, I was sitting in a waiting room at UCSF. Actually, at this time we might have still been eating breakfast at Mel's Diner surrounded by our friends. Because five years ago today, Drew was having his first open-heart surgery. It was a Monday, and a holiday, just like it is this year. That probably explains why so many people could join us at the hospital that day, but back then I don't think I realized it. It's funny how when you're in a crisis it's as if the world stands still. I didn't have any idea of dates and times and certainly had no knowledge of current events. In fact, I remember when we finally came home from the hospital ten weeks later, I was angry that bulbs I had planted before Drew was born had bloomed. I couldn't believe that life had gone on as usual as our world was crumbling. It didn't seem right or fair.

I was looking through my old photos to see if I have any pictures to post from that day. I don't. I have pictures from his baptism in the hospital on the 15th and then nothing until the 22nd. I don't remember why we didn't take pictures, but part of it could be because I went crazy. Like really, truly crazy. At first they told me I had adjustment disorder. I remember thinking, what woman wouldn't have trouble adjusting to this? Then later they called it a hypomanic episode. Whatever it was, I'm glad it's over now. Anyway, the only picture I have from that morning, someone else must have taken and it's a picture of us with all of our friends at breakfast that morning. Which is what the surgeon told us to go do while we waited. I do remember that we took one picture of Drew after surgery when his chest was still open, but we decided to delete it because we didn't want anyone to see our baby that way.

What a difference 5 years makes! In some ways it doesn't feel like it could have been five years ago. While Drew's scars have healed and are beginning to fade, mine can not be seen and they still feel fresh. It still stings when I think back to any of his surgeries or hospitalizations, or how scared we felt, how desperate and out of control. But then at other times it does seem so long ago--when I think to what we used to do on a daily basis. Eight medications, tube feedings, overnight feeds, multiple therapies, lots of doctor's appointments, plus all the normal baby's a wonder we survived all of that!

And what is he doing today, five years after they cooled his newborn body, sawed through his sternum, stopped his walnut-sized heart, repaired his aortic arch and inserted a conduit, shocked his heart back into beating, then carefully sewed him up again? He is getting into trouble! He is playing with his sister, running around the house, shouting, jumping, laughing. If I could have known then what I know now...

Thank you God for giving us Drew. Thank you for pediatric heart surgery. Thank you for the strength to carry on. And thank you for each passing year and the healing it brings.

Drew, two days before surgery, 5 days old. Breathing on his own, an IV in each hand and an umbilical artery catheter

Drew six days post-op, almost two weeks old. He's on the ventilator and has an NG tube.

Drew today-5 years old, happy and healthy

Saturday, February 14, 2009

Happy Heart Day!

Yesterday was our Be a Sweetheart event. We turned our annual Valentine's Day tradition into a women's event that our church could participate in. Instead of assembling everything at home, we brought all the supplies to a conference room at the Med Center and did it there. About ten women from church joined us and we filled all the bags with kisses, attached the heart balloons and notes, and put together buckets of jelly beans and thank you notes for the nurses who work so hard to take care of these kids. My friend Allison was able to come and share some of her story with her little boy, Joshua, who has HLHS. We also had a craft set up in the play room. Diana, the wonderful child life manager, stayed late so that she could take us around the units to deliver balloons to all the kids in the hospital. There were 87 kids that received balloons last night.

Drew and Ava came with us and were so excited to deliver balloons to the babies in the NICU. We especially like to bring balloons there because Drew spent six weeks at the UCD NICU when he was born (after the four he spent at UCSF after surgery). It's nice to be able to tell the parents that we understand because we were there five years ago, and look at him now! There was one family we spoke with who had been in for three weeks and were going home the next day. They were happy to see us and even lifted Drew up so that he could see their baby.

I love doing this and I loved being able to share it with more people this year. I hope we can do it again next year and maybe even expand to include another hospital...

Drew with some of the balloons at home

Me and Allison

Allison sharing her story, with bags of candy waiting to be attached to the balloons

My team-Jen, me, Kym and Allison

Our family ready to visit the babies

Ready to make a delivery

A funny story

This morning Ava comes out of the bathroom with no pants on. She has a big smile on her face and says "I went pee pee on the potty!" Of course we congratulate her on a good job, and what a big girl she is.

Then she says: "I learned how to stand up!"


Tuesday, February 10, 2009


Yesterday was the anniversary of the day we got Drew's diagnosis. It is usually a very difficult day for me as I remember back to the trauma we experienced that day. Surprisingly, I made it through the day without feeling the crushing sadness of last year.

It was actually a pretty good day. I think part of the reason I did so well is because I was able to share my story at Mom Connection. It provided a focused way to think about that horrible day 5 years ago, and encouraged me to share how God has redeemed it. The theme of the morning was women who have experienced real love through encounters with God and have demonstrated real love to others as a result. I'm sure it also helped to have all my friends praying that I would be able to focus on how well Drew is doing right now and how far he has come and not dwell on the past.

I have been thinking about why this time of year is so difficult for me and I think there are many reasons. Part of it is that is the anniversary of a shocking and traumatic event. The day my world was turned upside down, the day that changed the rest of my life. Also because it is Drew's birthday he often has yearly evaluations and doctors appointments, which just serve as a reminder of the challenges he faces. Thirdly, his birthday falls in the middle of CHD Awareness Week and everywhere I look there are sad stories of kids dealing with CHDs. Each story pains my heart because I know the ache those families are feeling.

This morning I feel the sadness trying to creep in. I keep reminding myself of the walking miracle I am privileged to be with each day. I am trying to keep busy and to focus on others. If I am busy thinking about and caring for other people, then I won't have time to think only about myself and my feelings. Today Ava and I are baking cookies for her preschool class and I am doing some of the final preparations for our Valentine's Day event at the hospital. I will have another opportunity to share my story that evening. Maybe after that I will post some of what I said here.

My walking (dino) miracle

Monday, February 9, 2009

Happy Birthday Drew!

Dear Drew,

Today is your birthday. I can't believe that you are five years old! So much has happened since that early Monday morning when you made your first appearance. We had waited with so much eager anticipation to meet you, to see which one of us you resembled, to hold your little body in our arms. You were a beautiful baby! You had a full head of black hair, long delicate fingers, and your daddy's toes. You had chubby little baby cheeks and you looked so pink and healthy. When you were born my world changed forever. I became someone's mother. I take the heavy responsibility of protecting you very seriously. I delight in your every accomplishment and my heart breaks with every trial you must face. I know you are going to do incredible things with your life. You have already touched so many people with your amazing story of triumph and perseverance. God created you just the way you are and has a great purpose for your life.

This year was an eventful one. You had your third open-heart surgery at Stanford. The surgery was a complete success, but unfortunately you experienced some complications that kept us in the hospital for six weeks. You were not very happy in the beginning, and who could blame you? But as time went on you impressed everyone with your good attitude and brought smiles to many faces as you rode your tricycle through the hospital corridors. Despite all that time in the hospital you still accomplished many things this year. You've had so much more energy since surgery. You rode your bike to the river and back, learned how to swim and walked the entire one-mile loop at the Heart Walk this year all by yourself. You and Ava became closer friends and playmates. And a big first this year: no hospitalizations outside of surgery. We visited the beach, and made our first family trip to Disneyland! We visited three of your friends in the hospital having their own heart surgeries. We registered you for kindergarten next year and signed up for t-ball.

Drew, I am so proud to be your mommy. I have learned much more from you than I have been able to teach you. I look forward to each year that we have together. I can't wait to see all the things you will do with your life. I love you forever.


Wednesday, February 4, 2009

Home Again

I'm back from my trip down south and it was wonderfully relaxing. I got to spend some good time with my best friend who I rarely get to see. We went on a run together and got pedicures on Saturday. I got to play with her sweet little girl and her husband treated us to sundaes on Friday night and coffee on Saturday morning. Thanks guys! Saturday afternoon I went to a baby shower for my friend Laura. It was good to see her (she looks so cute!) and to reconnect with some old friends. Plus my parents were there and they had yummy margaritas. It was a fun day.

When I got home though, I started to feel anxiety creeping in. I was in the car for about five minutes before I thought of someone I needed to call. I've got to get better at list making so I can keep everything under control. I've got Drew's birthday party on Monday, then my Be a Sweetheart event on Friday night. After next week I'm hoping things will settle down a little. I have been conscious of being home at night this week though, so at least the evenings have been pretty relaxing.

I have a funny story to tell you. Last Friday after I dropped the kids off at preschool I was on my way to the hospital to participate in some interviews about how Hearts of Hope was helping to support Nurdin and his family. On the way there I got pulled over by a mean cop for going 5 mph over the speed limit! Can you believe that?! My dad always told me I'd never get pulled over for going 5 mph over, but apparently he was wrong! He ended up giving me a verbal warning and a fix it ticket for my missing registration sticker that was stolen. But he started off by saying this: "maybe you know something that I don't about California passing new legislation changing the speed limit to 70 mph." Um, that was pretty snarky. He could have just said "I pulled you over for speeding." Geesh!

I haven't been very good at taking pictures lately, but now that it's February I will make up for it. With Drew's birthday, Valentine's/CHD Awareness Day, and my birthday, it's a month of photo ops! Here's a few from this weekend...

Ava had pajama day at preschool last week. You can't see her Lightning McQueen slippers handed down from Drew.

I got a chance to hold Nurdin on Friday. He didn't like it very much!

Me and my cute pregnant friend, Laura