Thursday, July 31, 2008

And the winner is...

Yesterday we drew the names for the raffle. It was very scientific. Everyone who bought a ticket was assigned a number. I carefully wrote out the appropriate number of tickets for each person.

Dan skillfully crumpled each paper into a uniformly sized ball. We decided they would mix better than if we just folded them.

After mixing the tickets to assure randomness, Drew reached into the vase to pull out each ticket.



And the winners are:

Katie & Andrew Scott - $100 Mikuni gift card

Paula Lawrence - $100 gift certificate to Center Court with C Webb

Gina & Gary Lambeth - $100 gift certificate to Ruth's Chris Steak House

Erick & Julie Soderlund - $100 gift certificate to Waterboy

Vanessa Whang - Brunch for two at Piatti

Laura Kronbetter - personalized baby blanket & booties

Paul & Kathleen DiBlasio - $35 Mary Kay gift certificate

Congratulations to all the winners! Valerie will be mailing your prizes to you shortly! Thank you to everyone who purchased a ticket or donated a prize. And a big giant thank you to Valerie for coming up with this idea and organizing the whole thing. Thank you for all of your help!

Wednesday, July 30, 2008

Earthquake

Yesterday we packed everything up and headed back home. The kids were missing their Daddy, their dogs and their toys, in that order. The drive was relatively uneventful and the kids did a pretty good job. When we were almost home I heard that there was an earthquake in Southern California. We just missed it! It wasn't a very big one and so far I haven't heard of any injuries or substantial damage. I served as the point person for my family since cell phone networks were busy down there, but I could call them. Everyone was safe and sound, although they did all feel the shaking.

This morning we drew the winners for the raffle that Valerie put together for our family. We raised almost $2000! Thank you to everyone who contributed! We will use the money towards our hospital bills, which are still being sorted out with the insurance company. I will post the winners later today!

Monday, July 28, 2008

The Beach

The kids and I are having a great time visiting my family in Southern California. In fact, as long as I can get a refill for Drew's aldactone filled down here, we're staying another day. If not I'll have to load up the kids today and head home. Friday was a busy day! First we visited my grandparents where the kids saw 1000 hummingbirds. Then we met my mom at work and said hello to some of her friends before we all had lunch at a yummy Greek cafe. After that, we visited my friend Jessey and her three kids who are also here visiting their Nani. The kids had a good time playing together and we had a good time chatting. Saturday my sister, my grandma and I went to the mall. The kids got lots of new clothes and I got a new set of luggage that was on sale and some makeup from MAC. We had some visitors at the house and my mom made her delicious homemade spaghetti sauce. YUM.

Yesterday we decided to go to the beach. And I was so excited because my brother and sister came with us too! They're young and like to sleep in so I was surprised when they said they would come with us when we woke them up at 9:30. But they are the best auntie and uncle ever! We had so much fun at the beach and made some great memories together. The weather was perfect, a little breezy and not too hot and the water was warm! It took a little while for the kids to warm up to going in the ocean, but once they did they were unstoppable! We played in the sand, ate some snacks, buried our feet and watched a seal that swam up out of the ocean and onto the beach. It was hard to pick only a few photos from our fantastic day, but here are some of my favorites.

Drew and Mommy

Ava playing in the sand

Drew and his giant shovel

Ava painting Grandpa's toes with a feather

Rachel, Thomas, me and our Dad

Ava and Uncle Thomas

Grandma and Drew

Oh, I forgot to mention that I also have the worst sunburn I've ever had in my life. I'm half Mexican and half Italian and I never burn, so I only put sunblock on my face. That was a HUGE mistake! My back and chest are an unnatural shade of crimson. I've been taking motrin and alternating between slathering on the aloe and draping myself with towels soaked with cool tea. I'm sure it will turn a pretty brown color in a couple of days, but I have certainly learned my lesson!

Thursday, July 24, 2008

Road Trip!

I got a crazy idea in my head yesterday and decided it would be a good idea to pack up the kids and make the six hour drive to my mom's house in So Cal. Without Dan (he has to work). Normally I would never do such a crazy thing as travel with two kids by myself, but I know my mom was really missing them and they were missing her. So we left at 6:30 this morning and made great time. The kids were so good! Here are my magic tricks for long car rides.

Go early when they're still tired
Invest in a DVD player for your car. The hours of silence are worth whatever it costs.
Bring lots of snacks (we had breakfast bars, bagels with cream cheese, bacon, PB & J, grapes, goldfish crackers & cheese sticks)
Expect unexpected stops for bathroom breaks/diaper changes

We made a quick visit with Jamie and her adorable baby, Ashley, when we first got into town. Then it was over to Grandma's house where we played with Auntie! When Grandma and Grandpa got home from work we played more, ate dinner, went on a walk and took baths. Now the angel babies are asleep in the same room. They were even good at bed time! All this goodness makes me wonder what's in store for tomorrow!

Here's some pictures from our visit with Baby Ashley:

Drew, Ava & Ashley

Me and Ashley

Tuesday, July 22, 2008

Roller coaster

I've been surprised at how well we've all adjusted to being home from the hospital. Obviously we are all thrilled to be home, but it also is a time for decompressing after the roller coaster ride we've been on. Not just for six weeks while Drew was recovering from surgery. But for about four years since his last heart surgery. When he was four months old they told us he'd be needing another surgery around 2 or 3. And then as 2 crept closer they said maybe 3 or 4. And then once we reached his third birthday we were told he could probably wait until he was 4. The whole time we were preparing ourselves to hand our baby over for the third time and trust that these strangers, who don't know him and love him like we do, would save his life.

Anyway, we've been dealing with home life really well. This morning Drew had a follow up appointment with Dr. Mainwaring (everything looks great). Since we were at Sutter we visited another heart family who is on their own roller coaster with their beautiful 3 year old daughter. And the emotions came flooding back. My heart breaks for this family. There is nothing horribly wrong with their daughter, but it's the highs and lows that drive you crazy. She had a great morning on Saturday, walking a lap around the floor. That night she was in septic shock. Monday she was responding well to the antibiotics, talking and spending more time awake. Monday night she desatted and they had to double her oxygen to 4 liters and put in another chest tube. So I've been upset. For the first time since we've been home, I've been crying. What is wrong with me? I don't cry when it's my own child, but I can feel the pain of the mother of this other little girl. I'd like to think that I'm just a compassionate person, that I care about this other family. But I think some of it is that I see my family in her family. I recognize their pain because it is our pain. I hear her daughter's cries, and I hear Drew crying.

I don't know exactly where I'm going with this. I guess I'm just sharing this experience with the internet. But for those of you who are not familiar with this world of heart defects and heart surgery, just know that for most of us, it is not over after our kids have their surgery. There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come.

OK, so I don't want to end the post on that cheery note, so I'll share some good news too. Today after our visit to the hospital I took Drew to the zoo. And it was the very first time that I didn't bring the stroller with me. Because he walked by himself the whole time we were at the zoo! He was running between exhibits checking out all the animals. He did ask me to carry him a couple of times, but this is such a huge increase in his energy and exercise capacity! Yay Drew!

Sunday, July 20, 2008

Reunion

This weekend I got together with some of my college friends for a little reunion. We all gathered in Calistoga to do a little wine tasting, get some massages & facials and reminisce about our college days. It's been 8 years since we graduated and some of us have seen each other many times since then and others I haven't seen at all. We've scattered around the country and had people flying in from Washington DC & Ohio, and driving from Arizona, San Diego, San Francisco & Sacramento. We're all in different life stages and it was amazing to me how natural it was to just be together again. It was so much fun! The only problem was how quickly Sunday morning came.

Dan very graciously stayed with the kids while I was gone, even though they both had colds and he had a fever that got as high as 102.6! My poor sick husband! He is the best! Luckily he feels much better today. I got home this morning around 10:30 and it was right back to reading stories and folding laundry. It was a wonderful weekend, but I am glad to be back at home with my family. See you girls in a couple of years!

Our party of 9 (plus Baby Ben) outside Sequoia Grove

Andrea, Jessey, Rahna, Meredith, Julie, Monica, Chelsea, Jen, & Crystal

Tasting the bubbles at Mumm

Getting a little tipsy at Silverado

Monica, Jen & me, definitely tipsy in the backseat

Thursday, July 17, 2008

Thank you

We've been home for two weeks now and I thought it was about time to say thank you to everyone who helped us make it through our time in the hospital. From the staff at LPCH to all our family & friends who visited, friends who brought meals, strangers offering words of encouragement and people supporting us financially through Valerie's raffle, we are so grateful. Each one of you has touched our lives and changed it for the better. Thank you for your compassion and generosity.

To hear the music for the slide show click play and then click the x to minimize the video.

Wednesday, July 16, 2008

Sweet Memories

I'm just sitting here thinking of Kevin Frandsen, sweet man that he is. This is Kate by the way, not Andrea. She can't think of a thing to say although of course there have been activities galore. There was a delightful play-watching and free-wine-drinking and some gym-going and i'm sure she'll fill you in.

However, tonight I'm here to talk to you about India. That's right, India. Here's a little story: Last night Andrea was collecting some money from Dan for dinner. That's because Dan is the one who works and makes the money. ANYway, there was an extra three dollars. Drew said, "is that for me?" and Andrea said, "no, what would you do with money?" Drew said, "give it to the kids." His vacation bible school class is sending money to orphans in India. So of course that's terribly sweet and Andrea gave him the money at which point Drew said, "that's not money. That's DOLLARS!" Adorable.

The laptop is getting hot and it may be clear by now that I have nothing to say and that it's probably a bad idea that Andrea gave me the computer when she was logged in to her blog. Good day to all.

Monday, July 14, 2008

Fun and Fevers

We had a busy weekend. It was filled with fun and normal things and it was a very welcome change! Friday the kids went to a birthday party for Abby who turned two! Dan enjoyed playing poker with his friends that night, while I hung out with some of the ladies. Then on Saturday I had a baby shower and Dan had a bike ride. Sunday I took Drew to church, then went straight to another baby shower for my good friend DeAnna, and then came home for about 45 minutes before I headed out again to celebrate my friend Jen's birthday at the Melting Pot. YUM.

Dan and Ava had to stay home from church because on Saturday Ava came down with a fever. It got up to about 102.5 but once she had motrin or tylenol she was acting pretty normal. It was only when she was really hot that she was cuddly (clingy) and took some extra naps. Her fever continued on Sunday but so far today it hasn't been back. But, I took both kids to the doctor today anyway. Drew is sounding congested to me and Ava was still acting pretty cranky and I thought I might as well have them checked out. Especially since we were warned to take immediate action if Drew gets a fever.

So I took them both to see Dr. Bullen and of course as soon as we got to the doctor's office they were both happy and playing and full of energy. I guess nothing makes them feel miraculously better like having me drive thirty minutes in traffic to the doctor and shelling out $40 for a copay does. Ava did have some spots in her throat which the doctor cultured and tested negative for strep. He thinks she's at the end of her illness. Drew had nothing wrong with him, but he said it could be the beginning of a cold and to do normal cold treatments--fluids, moist air, etc. If he does develop a fever, since we know Ava just had one we can watch him carefully. But we were warned to bring him in if anything else is going on. His puffiness is better, but I can still see some around his eyes. And his veins on his stomach and chest are very prominent. At cardiology the doctor said that could be caused by a clot somewhere, but that it wasn't something to worry about. But the pediatrician said today to keep an eye on it and let him know if it gets worse.

This morning Drew started a week of vacation Bible school. He had a lot of fun and his two buddies, Jacob & Eben, are in his class. While he was there I headed back to the gym for the first time in two months! I hope he can attend the rest of the week, but I guess we'll just have to wait and see...

Friday, July 11, 2008

Smoke

The smoke from the wildfires all over California has settled in the Sacramento valley. It has been awful. At times when I walk outside I think there must be a fire down the street because it so smoky. Everything looks orange as the sunlight is filtered through the smoke. You can see the thick smoke just looking across the street and it smells so strongly it almost chokes you. Needless to say the kids have been forced to stay indoors since Monday. It has also been well over 100 degrees. It's yucky! It is suppose to start clearing this weekend so hopefully we will have some relief soon.

In other news, Drew has been taking his lasix and aldactone only once a day since Wednesday and he is looking kind of puffy. We gave him his meds this morning and if he doesn't start looking better by this afternoon I think I may call the cardiologist.

Puffy face

Update: I called Dr. Parrish and he said to just put Drew back onto his twice daily lasix & aldactone. He said it might take another month before his body is ready to be off the diuretics so we are going to skip our x-ray next week. I'm glad it was something we could do over the phone and that he didn't make me bring Drew in for a bunch of tests.

Wednesday, July 9, 2008

Cardiology Appointment

Drew had his follow-up cardiology appointment today. It went very well. I was a little nervous he might not like them taking his vital signs, but I told him what they were going to do while we were in the waiting room and he said he would cooperate. When it came time to do it, he did great! His oxygen saturations are at 100%. I still have a hard time believing it! His BP, pulse & temperature were all normal and he is even gaining back some of the weight he lost in the hospital.

Dr. Parrish said he looks great and we talked a little about our time at Stanford. He was very impressed by Drew’s increased exercise capacity. Dr. Parrish decided to wait on an echo & EKG until the next appointment to ease him back in after his lengthy hospital experience (see why I love him?). The next appointment is in three weeks. We changed the lasix and aldactone to only once a day and have an x-ray ordered for next week to check the effusions. If his lungs look good he can probably stop the diuretics altogether. We still need to wait on swimming, probably only another week or so, until all his scabs are completely gone. We don’t have to do dressing changes anymore either. All in all it was a very good appointment!

Monday, July 7, 2008

Back to School

Today Drew had his first day of preschool in two months! He was excited to go back and see his friends and teachers. It was wonderful, but also a little strange to be getting ready for a normal day. We are out of practice! We were getting breakfast ready, getting everyone dressed and ready to go by 8:30. I was worried that Drew might have some trouble adjusting, since he is still a little whiny and little disobedient. I left them with my cell phone number, just in case, but when I picked him up they said he had a good day. So maybe he just needs some routine back in his life.

I got the house a little more organized this afternoon. I know it sounds crazy, but I have to go through all of our closets to make room for the toys and games and books we got. Today Linda came over to distract the kids while I got some work done, and I was able to get a good chunk done in Drew's room. Next on the list is Ava's room. Then our room. Then the office. And on and on.

This weekend we had some good family time. Saturday we went on a walk to the river. Drew rode his bike the whole way there and back. It is about a mile each way and he has never been able to do this before. I was so proud of him! It is clear that his surgery was a success and that he is stronger than ever! The kids enjoyed throwing rocks in the river and we had a little picnic lunch. When we got home Dan built a giant slot car track for Drew to play with and they had so much fun together. I think Dan likes it as much as Drew does. We did some chores around the house and had a yummy dinner that Valerie brought us.

Sunday we went back to church as a family. Both kids love church and were so excited to go back! We were welcomed home by lots of friends and we thanked God for bringing us all home safely, although I have to admit, His timing was a little different than ours. ;) Later that afternoon Ava attended a princess birthday party. She had a good time but was the only one who refused to wear her princess dress. She did wear a crown though and looked very cute.

Sorry I haven't posted for a while, apparently our internet doesn't work when it's hot. And it's really HOT! This morning it was already 80 degrees at 9:30 and the high today was 105! We had to beat the heat this afternoon by playing in the whale pool! Hopefully it will cool off and we can resume our normal internet activities.

At the river with all the rafters in the background

Riding back on the bike trail

Giant race track

Ava with the crown and wand she made at Isabelle's party

Cooling off in the whale pool

Friday, July 4, 2008

Happy Independence Day!

We celebrated our independence from the hospital today with good friends at a backyard BBQ. The weather was perfect and I kept thinking how glad I was to be there with them and not stuck in the hospital or in a hotel. It was great to see the kids interacting with their friends and great to just BE among friends. Drew was so excited about the fireworks, but once they started he was really scared of them. He ended up watching a movie in the car so he didn't have to hear them. Ava missed her afternoon nap so she went to bed early and missed the fireworks too. But Dan and I (and our friends) really enjoyed them! Thank you to Valerie's friend at TNT who provided them!

Drew with A LOT of fireworks

Ava at the BBQ

Drew at the BBQ

Opening the fireworks

He can't wait!

Our attempt at a family photo

Finally time for the show!

video

Thursday, July 3, 2008

We're Home!

Hooray! We are home! I am sitting on my comfortable couch right now, for the first time in six weeks! My whole family is under one roof, but not in one room, and everything just feels good.

The CT itself went well this morning. The cardiac anesthesia nurse said it was the smoothest CT she's done in a long time. Drew really did not like being in the PACU and lost it a little when they wanted to put the pulse ox on him, something he has done with no problem for weeks. He cried until he fell asleep on me and then they gave him some IV versed through his handy picc line to keep him asleep until we got into the CT room. Oh, here's something for you Kate, since you were wondering why anesthesiologists get paid so much. I was trying to convince her to try to let Drew do the CT with no sedation and she explained that they needed a picture with a breath hold, which requires him to be in control of his breathing and not asleep from benadryl. So I asked how she does that if he's sedated and she replied nonchalantly "I give him a medication to make him stop breathing and then I am in control of it." That's why they get paid the big bucks, to stop you from breathing but keep you alive.

Drew woke up from the anesthesia around 9 am when the surgical team came in and looked at his wound. They said it looked good and we didn't need to go to clinic. Which sounded great until I remembered that we need someone to take the PICC line out if the CT looked ok. So it was back up to 3W to talk to our NP Kiersten who took care of us getting back into clinic. Drew played in the playroom (hopefully for the last time!) until 12 and then we headed back to clinic. Our appointment was at 12:30, we didn't see anyone until 1:30, and we didn't leave until 3:00! But even though it was slow in coming, it was all good news!

The results of the CT today show that the abscess is completely gone! Praise God! Drew still has some effusions, so we will continue on the lasix and aldactone for that. He has switched to oral linezolid three times a day for the next two weeks and we will follow up with our cardiologist next week. We were warned to take any fevers very seriously though for the next month and head to the emergency room if it were to happen in the evening or on a weekend.

We were so excited to come home, we jumped in the car and headed right back to Sacramento. We left Palo Alto at 4:30 and didn't get home until 8:00. Waiting for us was our wonderful life group! Our furniture has all been replaced, the house looked clean, the fridge was stocked and our friends made a big welcome home banner for Drew. And they unloaded our car packed to the top with our stuff! Valerie was here too with a giant pack of fireworks that Drew can't wait to open! Thank you everyone!

Our little children are tucked into their beds and we can't wait to sleep in our OWN bed tonight! I have some more thoughts to post on surgery and the kindness of others as well as a lot of THANK YOUs, so check back soon for those. In the meantime, just know that we feel so blessed. Thank you!

Drew just before the CT

Our car couldn't hold anything else!

Drew and Ava with the welcome home banner

The life group ladies

Drew tucked into his own train bed

Wednesday, July 2, 2008

The zoo

We made it back to the PA Junior Museum and Zoo yesterday. It's very small, but was perfect for just walking around for an hour with the kids. And it's free! We looked at peacocks, turtles, ducks, geese, rabbits, raccoons, fish, bats, a hawk, an owl, ferrets, rats and probably some other stuff. Then we went to Grandma Kathy's house and played and had lunch. My friend Julie met me and we had our mini spa day. She had a facial, I had a massage and then we had lunch. Then it was back for a mani/pedi for me--I needed it bad! Thanks for the fun day Julie!

This morning I talked with the radiology people about Drew's CT tomorrow. We have to be there at 6:15 am! And we have to check out of the hotel by 11. So, we've got to figure out how we're going to get all of that done. The rules are no food after midnight, clear liquids til 4:30 am, then nothing til after the CT. They plan on putting Drew out, then starting a "big IV," injecting the contrast and starting the scan. I hope it all goes well, I'm sure that it will, but it seems like it's a bigger deal than I thought it was. I'm mostly concerned about his mental state, I don't know how he'll react to going back to the hospital for a procedure.

Today we are going to spend more time at Grandma's house and maybe visit the duck pond. Hopefully the next post will be letting you know that we're on our way home!

Looking at ducks and turtles

Checking out the fish

Riding a tortoise

Drew and a tortoise (it's not real)

Both kids loved the rabbit!


Drew holding his linezolid infusion ball--it's pretty cool, you just connect it to the IV port and unclamp the line and in it goes!

Being silly in the bathtub

Tuesday, July 1, 2008

Visits

I meant to do a post last night, but I fell asleep!

Sunday was spent having a yummy breakfast with my parents before they headed home to Southern California, then visiting with Grandma Kathy at her house. Drew was so happy to be there playing with her cars and dinosaurs and watching videos. Our friends Andrew & Katie came by after the As-Giants game and we had pizza with them and their sweet baby, Chloe. The kids were content to push buttons on the video games there, even though we didn't give them any quarters to make the games actually work. Then it was back to the hotel for baths and medicine and bed.

Monday we all got up and got ready to go do "something fun." Our idea was to take them to the Palo Alto Children's Museum and Zoo, but we didn't mention it in case it was closed. It was a good thing, because it is closed on Mondays. We went to the park instead and watched some diggers doing construction on a nearby lot. Afterwards we took Drew to the hospital for his wound check, which took about one minute after 45 minutes of waiting. The PA said it looks great, but to continue keeping it covered. Then we dropped off a gift for baby Giovanni who has been at the hospital for more than two months and needs to stay until after his second surgery in August. We had lunch at the cafeteria, then brought Ava back to the hotel for her nap and Dan was able to get some work done. My friend Liz and her two kids came to visit all the way from Sacramento and we went for a walk to a nearby park and let the kids play for a while and we visited. She brought us a delicious dinner and it was so nice to eat some real food since we've been having so much restaurant food lately.

Today we are going to try the zoo again and then my friend Julie is coming to visit and we plan to have a mini spa day. I can't wait! I'll try to be better about taking pictures, but here are a few I took in the last few days.

The kids "playing" video games

Ava at the park