Blood Drive

I organized a blood drive for the Children's Heart Fund, a local support group for families of children with congenital heart defects. We held the drive in honor of one of our members, Riley, who has spent almost 8 weeks in the hospital recently. It was kind of short notice and we were only able to get five people to donate yesterday, but many more people are using our donor club number to donate later this week at other Blood Source centers. Thanks to everyone who is donating!

Heart Catheterization on Tuesday

We received a call from the doctors at UCSF yesterday. Drew's heart catheterization is set for Tuesday, May 1st. They changed our appointment so that we would be the first case of the day. So we will be in admitting at 6:45 am. We will be spending Monday night with my cousin in Oakland, and Heather will be taking Ava to work with her Tuesday morning. Drew is not to have food or drink after midnight, but he can have clear liquids until 6 am. We are also to discontinue his lisinopril Monday night, but not skip any calcium doses. Since he is the first case of the day it is more likely that we won't have to spend Tuesday night in the hospital but we'll be packing pjs just in case. I also asked about recovery time and the Dr said that Drew should be back to normal the next day.

Since this blog is intended to contain updates on our family, but seems to be more about my mental health lately, I thought I would at least post some pictures of the kids from our trip to the zoo on Friday.

My little 'roos

Drew and his buddies driving the dump truck

Ava running through the zoo

Ava just kicking back in her stroller

New York Trip

New York was awesome! The weather was great, my travelling companions are the sweetest, funniest and most fun women out there, and New Yorkers are so friendly! We had four days of worrying about no one but ourselves and I have to say, we got along great for having five women share a hotel room with only one bathroom for the duration of our trip. We even instituted a twice a day group hug, to keep our blood pressure down.

Some highlights from the trip:

• A gift bag from our mutual friend Kacie--it was filled with magazines and candy and we opened and took a bite of everything in that bag!
• The bag also came in handy during our cab ride from the airport to the hotel. Suffice it to say that gift bags also double as barf bags in a pinch. (thank you Kacie!)
• Bus tour of the city where we were so tired we took turns falling asleep on the top deck of the bus.
• While waiting in line to see Regis and Kelly we saw Howard Stern walking his dog. Which was nice since we didn't get to see Kelly and Donald Trump (guest host) despite waiting in line for hours.
• Taking the Staten Island Ferry (its free and no line) to see the Stature of Liberty and Ellis Island
• View of the city from the Top of the Rock
• We all had to buy short sleeved shirts. We packed sweaters and scarves but the weather was in the 70s and 80s
• We were always running! On the way to see Chorus Line one friend fell and on the way to see Rent I got my heel stuck in a grate!
• Eating hot fudge sundaes and frozen hot chocolate at Serendipity
• Singing karaoke with Tyra at the Spotlight in Times Square (yes, Tyra Banks!)
• Visiting Ground Zero and the 9/11 Memorial Gallery
• Buying bagels, hotdogs, pretzels and hot nuts from the street vendors
• Delicious dinner & frozen cosmos at Carmine's
• Dancing in front of our hotel (The Doubletree Times Square) at 3 am
• Carriage ride in Central Park
• Foot massages while waiting at the airport

Here are some of my favorite pictures:

It was chilly on the top of the bus

Outside a Flower Shop

Statue of Liberty

Buying a hot dog from this friendly street vendor

Rockettes at Radio City

Empire State Building at the Top of the Rock

Dee and Rose enjoy their frozen hot chocolates at Serendipity

That's Tyra and Benny Medina singing at the Spotlight!

That's us being broadcast live on Times Square

Frozen Cosmos at Carmine's

Andrea in Central Park

Carriage Ride in Central Park

Feeling Better

I had two days of crying plus a lot of prayer and I am feeling a lot better today.

I have the best husband ever! After being gone for four days in New York I returned home and was a total wreck. I couldn't cook, I couldn't clean, I could barely care for the children. And he just kept right on truckin'. He made dinners, cleaned up and helped so much with the kids. And when I called home crying, saying I was sorry I couldn't be a good mom and wife right now, he just said "What are you talking about? Don't even say that." I love him so much. God really gave me the perfect partner in Dan.

Today we have been busy. I think that is the key to my sanity. If I don't have time to sit and think I will be ok. This morning we had gymboree preschool. The only reason Drew goes to gymboree preschool is it is the first class of the day--everything is clean. And, there are only two other kids in his class, limiting our exposure to germs. And I get 45 minutes to go to Starbucks or Target or read a magazine by myself. After gymboree Drew had his first day of school! OK, so its adaptive PE held at the elementary school that he will be going to eventually and its only for a half hour, but still! He went by himself with the teacher and I had to sit and wait for him in the office. Then we came home where a friend joined us for a picnic lunch in the sunshine. I've also resumed some of my normal household duties and I'm starting to think maybe I could use cleaning as something I can control. I will throw myself into keeping a clean house and it will be spotless because I will be in charge! A nice change from Drew's health where I can only pretend to be in charge.

I talked to someone from UCSF yesterday about how to prepare Drew for his cath on Tuesday. She said to play with our doctor kit, read Franklin Goes to the Hospital, and tell him on Monday that we'll be going to the hospital. She also told me to let him help pick what to pack in his suitcase, and let him bring special pillows, blankets, or toys. And a DVD player with his favorite movie. We'll be able to stay with him until he is asleep and be with him when he wakes up. I am feeling better about the whole process and I am looking forward to having it behind us. It will be good to know when surgery will be so that we can plan other things. For example, we have two weddings and three graduations (including my own) during a two-week time span in the beginning of June. It will be nice to know if we'll be able to attend any or all of these events.

Crappy Day

New York was awesome. I will write about it when I am in a better mood.

Today was crappy.

I had a great time on vacation. Almost too great. I think there might have been a bit of denial going on there. Because the minute I got home I felt like I was slapped in the face with reality. I have been crying all day. Why? I don't know. Because Drew's heart catheterization is in a week. I know he will be fine. I know it is a routine procedure. It is diagnostic. We will be home after one day. But my head and my heart are having a conflict. My heart is crying out, NO! I don't want to go. I don't want to do it. I don't want surgery. And when Dan tries to reassure me that Drew will be fine, I can't help having the tiny little thought of what if he isn't?

And I have such wonderful friends who are more than willing to help me and support me. One of them called this morning to see how I was and when I told her "not so great" she decided to come over and keep me company. She loaded up her sweet little girl into the car and started over. And then she got hit by a car. She is ok, and her daughter is ok, but her car is not and she has to go to the doctor to have her neck and back x-rayed. And the horrible person who hit her threatened her and took her cell phone away so she couldn't call the police. What kind of person does that? After a while someone stopped to help and my friend was able to call the police and they arrested the jerk who hit her. And it made me cry even more.

Time for a Vacation

I'm going to New York! I have never been before, aside from having a layover there on my way home from Europe after I graduated from college. I'm leaving tomorrow night on the red eye and will spend four awesome days in the city that never sleeps. The best thing about this trip? I'm going with four other women, no husbands, no kids. I can't wait! We plan to see some sights, see a Broadway show or two, do a little shopping, spend an afternoon in Central Park, and ride the subway without getting mugged.

With everything that is going on right now regarding surgery and hospitals and doctors, this comes at the perfect time. I need a vacation! When I come back, hopefully I'll be revitalized, if not rested, and ready to make some serious decisions about where to go from here.

My brave husband will be taking care of both kids by himself for four days! I have to hand it to him, most of the other husbands are calling in the in-laws for reinforcements. Dan says he can do it on his own. I am confidant that he CAN do it, I just think it will be extremely difficult. We truly share the work involved with taking care of our kids and I really don't think I would want to do everything myself if he were to leave for four days. I am sure they will be alive and well when I get home, but I am wondering what they will look like (no pants, uncombed hair, same outfit every day) and what the house will look like (four days of dishes, cheerios strewn through every room, every toy left where it was dropped).

Alright, I'm off to pack my suitcase!

Rumors

There have been some rumors among the heart community that things are changing at UCSF.

A lot of the parents are concerned about what is going on. More recently we have heard that Dr. Karl, the chief of pediatric cardiothoracic surgery at UCSF is no longer doing surgery there. I know one mom who has been emailing her PC with questions, and I of course have been making some phone calls. I talked with the CNS the other day and asked her to convince me to go to UCSF for surgery. I am feeling unsure about it and really just wanted her to tell me that it's one of the best places in the country for pediatric heart surgery, that the surgeons are among the best in their field and that we would be crazy not to go there. She didn't exacty say that.

She did say that our surgeon, Dr. Azakie, is very well respected and that UCSF is a high volume heart center, they have been doing these surgeries for 30 years and have a lot of experience. She also said that she has heard that some parents complain of it feeling a bit like a factory, with less "hand-holding" and some difficulty in talking to the surgeons or cardiologists as often as they would like. She suggested I call our cardiologist to ask his opinion.

So I did. He called me right back (love that!). He said that UCSF is liking the surgical results that Dr. Azakie is getting better than those that Dr. Karl is getting. They have promoted Dr. Azakie and are "turning away from Dr. Karl." Not sure what that means exactly. I shared my concerns that "politics" might be getting in the way of providing the best possible care for our kids. He said he was unaware that anything was going on in the ICU or anywhere else, all he knew about was the stuff with Dr. Karl. But he did say he would check into it and let me know. He also said he has the utmost respect for the cardiologists there and that he thinks we should proceed with the heart cath at UCSF on May 1st. Once we get the results he said we could possibly send Drew's records to some other surgeons and see if anyone would do anything differently.

Up until this point I have been completely comfortable at UCSF because of the dedicated pediatric heart center. I feel better knowing that Drew will be somewhere where all the nurses/doctors/staff do all day every day is take care of cardiac kids. I also completey trust Dr. Azakie because he did Drew's first two heart surgeries and I feel that he knows Drew's heart the best. So I guess I am looking for some reassurance that UCSF is the best place to be, that the doctors and staff are among the best in their field, and that there is a high rate of favorable surgical results. Why can't this be easier?

Ava Update

Well, something's wrong with her, but I'm not sure what it is. She has a runny nose (mostly clear) and is coughing a little (mostly when she's laying down). Also pretty drooly. No fever and she's pretty much acting like her usual self too. And so far Drew is healthy! This makes me think that maybe its allergies. Can babies have allergies this young? Or maybe she's teething, although I don't see any coming through. So, who knows?

She's also decided that she no longer likes baby food. She refuses rice cereal mixed with any fruit or vegetable. She struggles to get away and blows raspberries. It's kind of cute, but not when it gets on you and all over the floor. So I have started feeding her exclusively finger foods. She loved them yesterday, but today not so much. The only thing she would eat today is cheese and buttered toast. At least she's finally getting 5-6 ounces of formula at each feeding.

Here is a list of things she threw on the floor at lunch:

• hard boiled egg yolk
• tiny pieces of chicken
• tiny pieces of strawberry
• cooked pasta
• toast
• cheese

Also, I've been quite productive today and am feeling a little proud of myself. This morning I went on a one-hour walk, took a shower (trust me this doesn't happen everyday), got both kids dressed, took Drew to the park for an hour, fed everybody lunch, did three loads of laundry, and cleaned two bathrooms. And that was by 3:30! So to reward myself I get to go scrapbook with my friends tonight. I hope I am just as productive tonight!

Happy Easter!

Easter Party

So I decided to take Drew to a toddler Easter party, despite our Dr.'s orders to avoid groups of children. About half the party was outside, so that lessens the chance of infection, right? Even as I sit and write this Ava is coughing in his face, so why bother limiting our fun when she will probably get him sick just in time for Easter Sunday anyway.

Anyway, we had a lot of fun although I was constantly evaluating the other party-goers for runny noses or coughing and making a mental note of which children to avoid getting too close to. Drew colored about 3 of the eggs I brought and I had fun decorating the rest. There was also a duck craft which I convinced him to try, plus a yummy lunch and Easter egg hunt. He was so glad to be reunited with some of his friends and really enjoyed playing outside with them.

We left the possibly infectious, possibly allergenic Ava Baby at home with Daddy. Despite not feeling well she looks pretty adorable in the bunny ears that Grandma sent. I am hoping to be able to put both kids in their Easter clothes and take some cute pictures today, but we'll have to see how everyone is feeling.

Bad Mood

I'm in a mood. And its not a good one.

You would think that with the quarantine and complete house arrest we've been under there would be no possible way my kids could get sick. But you would be wrong.

It appears that Ava has a cold. I know, its not the end of the world, but I am trying my hardest to avoid group activities & to keep everyone covered in purell, and for what? Why am I avoiding the fun things that we like to do if some rogue germs are just going to get us anyway? And how am I possibly going to keep Drew from getting whatever she has? I give up!

My random thoughts

Well, we're all feeling better and eager to get out of the house! We've spent the last couple of days going to the park and playing outside. One of Drew's new favorite outdoor activities is looking for ladybugs. He's so cute. When he sees one he usually tells me what it's doing. "Look Mommy, it's under the leaf. That's silly." Ava seems to enjoy our outdoor time too. When Drew was a baby he hated to touch the grass. If we put him down he'd stay in one spot, not moving. Ava doesn't seem to mind it and walks around on the lawn looking for tasty leaves.

With our new "no big groups of kids" rule we had to figure out how to do church this morning. We were both working in the children's church so our kids had to be with us. We decided to keep Drew with me and the infants (they are less mobile and less able to spread germs) and set him up with the portable DVD player. It worked great! He sat quietly watching Cars during the entire service.

While I was in the nursery I overheard some other moms talking about how hard it is to take their babies to get their immunizations. This is not the first time I've heard this complaint or the first time it bothered me. It's not that I wish they had to endure the kind of hospital procedures that we have, or that I'm just cold hearted. I think that I am a little jealous. I wish I could be a "normal" mom and that the worst thing I had to worry about was a quick shot for my kids. I think I was especially sensitive this week because of the horrendous experience we just had with getting an IV in.

I am also preoccupied with concern about Riley, a sweet little boy we know who is going through an incredibly difficult hospitalization right now. His poor family is having the kind of experience we heart families have nightmares about. I find myself thinking about him and his family and checking his blog many times a day. I wish there was something I could do to help them, but having been in a similar situation I know nothing will help until they have him home safely again. Please keep his family in your prayers.