Disneyland Birthday!

Gabby turned 4 on 11/1. So, this year, instead of having a party here, I decided to take them to Disneyland for Gabby's birthday. She got in for free that day, and we were able to stay with Jack's neice, Nova, and sister, Toni, thereby avoiding hotel and car rental costs. It was their first airplane trip, too!

I managed to keep the trip a secret from both girls. Of course, their teachers knew, and I arranged for our neighbor to look after Clem the Cat. They didn't even know that we were going on a plane trip until about an hour before the shuttle came to take us to the airport when I picked Sarah up from school.

I finally told them the day after we got there (Halloween) that we were going to Disneyland the next day for Gabby's birthday. There was, of course, much excitement. Both girls had wanted to go to Disneyland for some while. Jack's sister, Toni, had previously worked there, and she came along and really helped make it a great experience. Also, Jack's neice, Nova, met up with us there, and she added to the fun as well. It was so much easier to do Disneyland with 3 adults and 2 kids as opposed to 1 adult and 2 kids!

They both dressed up as their favorite Disney Princesses for Halloween. Sarah dressed as Belle and Gabby dressed as Aurora. We went trick-or-treating in Nova's neighborhood. Gabby got so much candy that she wound up dragging her treat sack. When unsuspecting adults would hold out the bowl of goodies, she'd grab as much as her little hand would hold. I almost fell over when I realized how much sugar she'd gotten away with. Of course, I had them wear their Princess outfits to Disneyland. We couldn't do it any other way!

The day before we went to Disneyland, Toni helped the girls make very special memory books for the day. They got to choose which paper they wanted for the cover. Toni printed out stickers of a bunch of Disney characters. Then a sticker for each character was put on each page so the characters had their own special page to sign. It was much more special than a store bought memory book, and the characters were very pleased that they had their own page. It added to the magic of the day.

The day at Disneyland was magical. Gabby got a special button saying that it was her birthday. The rest of us got buttons that said, "I'm celebrating!" Every time we turned around, someone was saying, "Happy birthday, Princess!" It was pretty cool.

Gabby doing the Happy Dance

After we got into the park, stashed some stuff in a locker, and rented a Disneyland stroller, we rode the train so we could meet the Princesses. The train ride was fun, and I especially liked how they constantly reminded parents to watch their kids. They even had signs reminding us.

The train ride

Meeting the Princesses was one of the best stops we made. Sarah was dressed as Belle, and Gabby was dressed as Aurora (AKA Sleeping Beauty). The first Princess we met was Ariel, also a favorite of both girls. She was so sweet with them.

Waiting to meet the Princesses

Next in line was Aurora. She immediately asked Gabby if she'd been in her closet since they were dressed pretty much the same. Aurora showed them how to twirl in their dresses, which was a lot of fun.

Then, much to our surprise, Belle stepped up. It was amazing to get a picture of both girls dressed as their favorite Princess with those Princesses. This is something that just doesn't happen. It was as if it was planned that way and utterly magical.

The last Princess we met was Mulan who was very nice.


Then it was off to meet Mickey and Minnie. We met Minnie first and went through her house, then we met Mickey on the set of one of his movies. Gabby didn't like the darkened theater we waited in much, but she had a good time meeting Mickey.





Next it was off to do a ride or 2. We rode on the Dumbo ride. Gabby and me in one, Toni and Sarah in another. Nova passed so she could take pictures. Then we did the carousel. Then we went through Aurora's castle.





From there, we went to Pixie Hollow. The girls got sprinkled with pixie dust on our way there. The first fairy we met was Fawn. Fawn is the one who talks to animals. Sarah has a Fawn doll hanging above her bed, and she helps take away bad dreams. Of course, Sarah had to tell Fawn this, and Fawn was quite impressed.


Then, of course, we met Tinker Bell. Tink is one of Gabby's favorite characters. A few days before our trip (when she had no idea we were going), on the way to preschool one morning, Gabby said, "When we go to Disneyland, I'm going to meet Tinker Bell, and when I do, I'm going to run up to her and give her a hug." And that is exactly what she did. One of her souvenirs is a baby Tinker Bell doll that she just loves.


Toni had generously decided to make reservations for Pat-A-Cake, which is a Disneyland birthday party of sorts. Everybody gets their own little cake to decorate. Mickey and Minnie are there, and the birthday kids each get their picture taken with the Mouses. It was fun. I think Gabby wore more frosting than she ate, though.


Of course, we had to do more rides. We rode Pirates of the Caribbean, Nemo, Pooh, and Autopia. Autopia was a blast. I let Gabby "drive" while I did the pedal. We'd hit the middle track, and she'd laugh her maniacal laugh, then we'd hit in the other direction, and she'd crack up some more. I don't think I stopped laughing that entire ride. Toni was in the car behind us, and she could hear Gabby laughing!

We ended the day with fireworks and some souvenir shopping. We were walking out of the park at 11:50 at night. We'd spent something like 14 hours there. We were all exhausted. And it was so worth it.

Gabby & Nova waiting for fireworks

(More images available on Facebook)

Fishies!

It's been awhile since I last posted. Sorry about that.

After we got back from our CA vacation, I kept my promise to Gabby and Sarah, and I got a fish tank. Rather than borrow one, I went and bought a 10 gallon starter kit at the local pet store. It came with most of the stuff I needed to get started, including fish food. However, it didn't include gravel, plants, test strips, or the actual fish. After setting it up, I let the water "settle" for a couple of days. Then we went and got our first fish. We've added them slowly to the tank, no more than 3 at a time every week. We are now at full capacity.

We now have a total of 10 fish in this tank: 3 zebra danios, 3 neon tetras, 2 black mollies, and 2 sucker fish. The sucker fish like to hide, and it can be a challenge to find them sometimes. They like to eat the algae. I call them Fang 1 and Fang 2. They aren't very pretty, but I guess every tank needs a bottom feeder or 2. The neon tetras are like the airheaded blonds of the tank. They're really pretty, but they seem to confuse easily. (They're either blonds or hippies.) They like to just hang out, eat when it comes, and be the cool pretty fish that they are. The zebra danios are the first fish that we got. While they are zebra striped, they also are kind of shimmery in the right light. They like to chase each other around the tank. Really fast. The black mollies are the large black fish. One of ours has a little white on the bottom of its head, so I call it Whitebeard. They like to eat the algea tablets that are meant for the sucker fish. We recently lost one of the black mollies (don't know why), and when it was sick, the other one nudged it like I've seen cats or dogs do. I've also noticed that there isn't much inter-species mingling going on.

So, Sarah decided that she wanted goldfish to call her own. So we have a second goldfish tank. It is very princess. She has named them Yellowie-Goldie and Reddy-Orangie. Hey, I just report the names. They seem to be doing well. They get fed once a day. That tank is in a different spot than the other one.

We all like to watch the fishies. I'll even stop to watch them sometimes. There's something relaxing and soothing about it.

What A Ride!

This is typically a family & kid activity blog, but this blog entry is an exception.

I've been looking at the various life changes I've gone through in the last 10 years, and there are a lot of them. Here's the list of the major ones:
- graduated from nursing school
- finally split up from my ex-husband
- fell madly in love with Jack
- moved to a different city (Oakland, CA from Santa Rosa, CA)
- married Jack
- moved to WA state
- had my first baby just shy of my 43rd birthday
- had my second baby who had a serious congenital heart defect and came very close to losing her
- became a widow

That's almost one major event a year! (The first 4 happened in an 18 month period of time.) That's almost an adult lifetime's worth of stuff packed into less than a decade. Dang.

Makes me wonder what the next decade is going to hold for me.

Moving on Up

It's been a week of kids moving up in the Darkhand household this week.

First, it was Sarah's first day of kindergarten on Wed. She loves it. She's in for a full day, which she seems to be quite ready for. She's already had 2 P.E. classes. Her teachers job share, and I like them both. For us, the first day was more exciting than anything. I felt like my face would crack from all of the smiling I was doing. Of course, I took plenty of pictures. Her first few days have gone well, and her teachers have told me that she's doing great. It's been very exciting. It's also meant a change in schedules ~ off to bed earlier, up earlier, and out the door in the morning!

Sarah & her teacher

Lined up to go into class for the first time

Meanwhile, I decided to put Gabby into daycare 5 days a week. I think the consistency will be good for her. She likes everybody there, and it gives me time to do things I need to do around here, or to just have time to myself. Well, today she got moved up to preschool! Potty training has been the issue. She's been staying dry there and taking herself to the bathroom. So, they decided to move her on up. Other than her slow potty training, she is so ready for the move. She did great today while there. She has the same teacher that Sarah had there.

So, it's been a week of exciting changes for my girls.

Follow-Up

I heard back from Dr. Lewin, Gabby's cardiologist, about my concerns regarding H1N1 flu & its effect on CHD kids. His answer was pretty short. He said:

It is reasonable to get the vaccine. Other than that no one knows if kids with CHD are really at higher risk. I’m not sure what else can be easily accomplished. I’ll keep you posted if I hear other ideas.

I wish that this was more illuminating, but this virus is so new, we really don't know how it will affect various patient populations. While it can be scary, especially if we have a child with other-than-normal health issues, it seems that the most prudent thing to do is get the vaccine and help our kids remember to wash their hands.

Swine Flu

Ok, I haven't been to worried about H1N1 flu. Until now. Then I read this article from the Santa Rosa Press Democrat: http://www.pressdemocrat.com/article/20090828/ARTICLES/908289916/1350?Title=El-Molino-student-14-dies-from-swine-flu

This teen had been healthy, active, and involved in sports. Only thing his, he had open heart surgery at 2 days old. but he'd been "healthy" ever since according to the article. Sounds like he died pretty quickly from complications. So, all you parents whose kids have had OHS, we really do need to be vigilant against this bug.

Now I am worried. More so than I was before.

Vacation!

This month, I took my courage in hand and put me and my girls in my Toyota Corolla for a 10 day car trip. We saw a lot of people and visited a lot of places. We had a good time, and we all survived.

Our first stop was Portland where we saw our friends, Catie & Brent, who moved to Canada on the day we returned. I first met Catie at a party that Jack threw in 2000 or 2001. It was good to see them again. Our visit with them was short, as I wanted to reach our midway point by that night, which I did. Midway was Roseburg, OR, where we spent our first night. I'm virtually certain that the hotel we stayed at was the same hotel Jack & I stayed at when we moved up here in 2003. They had his name in the computer, and I remembered the room where the free breakfast was served.

Our first stop the next day was at Sunny Valley, OR, to see my former mother-in-law, Edith. I've always really liked her, and it was good to have a short visit. We met at the local general store so I wouldn't have to drive all the way to her place. We made Sacramento, CA by that evening. We were able to spend a few hours with my friend, Mike Blair, who perfomed my marriage ceremony to Jack. (To this day, he says that it was one of the proudest moments of his life.) He fell in love with the girls, and they with him, and he is now Uncle Mikey to them. Since his apartment is so small, we stayed in a hotel in Sacramento that night.

Our third day on the road found us at Fisherman's Wharf in San Francisco. I put Gabby in a stroller for that one since she's still so short. They enjoyed the sights and sounds. We had lunch at a place called the Rainforest Cafe. It was really cool inside. (It had a fun gift shop, too!) The upstairs was kind of dark, and it had a waterfall with steam from dry ice, large (fake) stuffed rainforest animals such as gorillas and elephants, and every so often the lights would blink and you'd hear the sound of thunder and rain, and the gorilla next to our table would appear to shake the trees it was holding onto & make many gorilla nosies. They also had lots and lots of fishtanks. While it was a little loud (and expensive), it was a nice vacation treat for us. It was an uncommonly beautiful day in The City with mild temperatures and NO FOG and some wind. We enjoyed ourselves just sitting on the grass in the sun and looking at the sights, too.

A street performer in SF

Inside the Rainforest Cafe

My girls enjoying the rare SF sunshine

That evening, we headed over to our friends', Dan and Patty's. We stayed with them for 2 nights. They are probably our closest friends and the girls' godparents. While it would have been nice to be able to spend more time with them, we enjoyed the time that we did have. Our first full day there, Patty & I went to Target and had lunch at Togo's with our kids. Sarah managed to get lost in Target. I thought she was with Patty, and Patty thought she was with me. I dashed through the store looking up and down the aisles in a panic. Fortunately, someone had taken her to Customer Service. About the time I heard my name over the PA system, I was at that part of the store. I haven't been that frightened in awhile, and I don't care to repeat it for again. Sarah and I had a conversation about what to do in that kind of case, and she knows that should that happen again, she is NEVER to leave the store with a stranger. I was so relieved to find her.

Also while we were visiting Dan and Patty, we went to the Wildlife Museum in Walnut Creek. Now that was fun. I got to see lots of live owls (a favorite of mine) & I got several decent pictures of them. We also got to see them feed the bobcat. That was one of the highlights of our visit down there. I lived in the SF Bay Area for over 40 years, and I never knew about that place.

Gabby, Aidan & Sarah sitting in an eagle's nest

One of my favorite picutres of a living barn owl

Our next stop was a hotel in Berkeley for one night. The following day, 3 nurses that I used to work with at Alta Bates Hospital in Berkeley met us for lunch. I hadn't seen them for years, and they'd never met the girls. It was nice to have an adult lunch, and the girls were pretty well behaved. It also reminded me that I really do love being a nurse. But, of course, they wanted to hear all about what we've been doing, more about how Jack died, what the story is with Gabby, and so forth. Hopefully I'll get to see them again the next time we're in the area.

We then headed to Monterey. I was hoping to see some other folks in Santa Cruz, but time and circumstances just didn't allow it this time. I'd learned about a very reasonably priced, kid friendly, bed and breakfast in Pacific Grove (right next to Monterey), and we stayed there for 2 nights. One of the things that I liked about this place was the wine and munchies in the eveing in addition to the hot breakfast in the morning. The room was comfortable, and the girls each had their own bed to sleep in!

On the couch at the B&B

The day after we arrived at Monterey, we headed to the Monterey Bay Aquarium. That was lots of fun. We all really enjoyed it. While I was bummed that they didn't have a reciprocal agreement with the Seattle Aquarium, the admission price, while a little steep, was worth it. We saw all kinds of things . . . deep ocean fish, kelp beds, tropical fish, jellyfish, seahorses, otters. We arrived just before feeding time for the ocean fish. We got over there quick and got good seats close to the glass. Every time a school of anchovies would come towards Gabby, she would start to jump up and down and clap, and when they got close to her, her childish joyful delighted laugter made it all worthwhile. It's amazing how a child's pure delight can brighten one's whole day. She just loved that exhibit and all of the other fishies that she saw. I think Sarah much preferred the hands-on stuff. I liked the jellyfish and seahorses and tropical fish. We must have spent at least 4 hours there. We also had lunch there and got a few items in the gift shops. (Doing our part to stimulate the economy of Calif!) After all of that, we walked up and down Cannery Row. Then we went back to our B&B and collapsed. (Actually, I was happy to get there about in time for a glass of wine.)

The day after the aquarium, we started heading back up north. We wound our way back over the Santa Cruz mountains, up Hwy 280, down famous 19th Ave in SF and across the Golden Gate Bridge. I'd promised Sarah that we'd go across it, and we did. By this time, The City's typical foggy weather had returned, so there wasn't much to see off the bridge. We stopped at the view point so the girls could see the bridge from the other side. Then it was through the Rainbow Tunnel, which my grandfather worked on. (Yes, folks, for those who don't know it, I'm a CA native, born in SF.)

Gabby & Sarah at the Golden Gate Bridge vista point

We made a couple of detours in the towns of San Aselmo and San Rafael, just north of SF. In San Rafael, we stopped by to see a couple of people who were instrumental to me when I was a child. I'd left their phone number at home, so I couldn't call. We stopped by their house, but, unfortunately, nobody was home. Bummer. I also managed to find (after a lot of searching) the church where my uncle, Don's, ashes are located. I was able to pay my final respects to him nearly 2 years after his passing.

Then it was on to Santa Rosa, the town I lived in for some 29 years. My friend, Kirsten, was generous and went to her boyfriend's so the girls and I could have her 3-bedroom house to ourselves. We all had our own room to sleep in (luxury!), and I am very grateful. We also had time to hang out with Kirsten which is always enjoyable. The following day, we saw my former housemate of some 19 years, Norene, in Windsor, and my other long-time friends (and, at times, surrogate parents) Mac and Marian, in Sebastopol. This was the day of being true social butterflies.

Sarah in front of Kirsten's yard

That afternoon, we headed to my cousin, Faith's, house. She's actually my second cousin, but she's less than 24 hours younger than me, and we've always been friends. I also saw my great-uncle Alvin and my other cousin, Glen, who are currently living with her. The girls got to stay in her son's room. We shared a hot tub and lots of conversation. She just got back from hiking all 200 miles of the John Muir Trail, and she called me when I was headed north out of Monterey to let me know that she was back! So we extended our stay by one day.

The following day we headed home in earnest. Sarah wanted to take the "pretty way," so we did. It took FOREVER. We went up Hwy 101 to the Oregon coast. It took us something like 9 hours to get to the halfway point where we finally stopped in exhaustion. The next day it took hours and hours to get as far as Tillamook. It was a beautiful day, and there was a lot of traffic on the Oregon coast that day. We did stop at the Tillamook Chesse Factory for a look-see, some ice cream, our last flattened pennies, and our last souveniers. We then cut over to Portland for more familiar territory and, hopefully, faster travel. The plan worked great until we hit Tacoma where the construction started. We hit something like 4 different construction areas within 30 miles of home. Traffic, on a Sat. night after 10:00 through downtown Seattle, was all of 10 mph! I took the first exit I could. (As a consolation, I did win the new George Strait CD on the radio while stuck in traffic! Was on the radio, too!) We didn't get home until 11:00 that night. I tell you, Seattle never looked so good to me as it did that night.

So that's our car trip. It was our last great hurrah before I finish my refresher course & go back to work & Sarah starts kindergarten next week. It was good to go. But, to quote Dorothy in The Wizard of Oz, "There's no place like home."

Sarah lost a tooth!

Sarah lost her first tooth tonight! She thought it was a piece of dried up corn in dinner. She spit it out and put it on the table. Later, I noticed that the tooth was gone. I had to look on the table for it since I hadn't cleaned up yet. She felt absolutely nothing. (I guess the tooth fairy will be visiting tonight. Wonder what the going rate for the first tooth is these days.) The one next to it will be out within days, too. It's also very loose. The adult teeth have already broken through. On top of all of this, she starts kindergarten in 10 days. My firstborn is growing up!

I will hopefully soon post an entry about our 10 day car trip. I think I need to install some software on my computer in order to get photos from Jack's digital camera onto my computer. My computer isn't even reading the card by itself, which is very frustrating. As soon as I have some images to post with the entry, I'll post something.

Social Butterflies

It seems that we have been social butterflies for a couple of days this week.

On Thurs., we had our last official playgroup get-together. We've been meeting most weeks for almost 5 years now. We started when our older kids were about 8 months old. The 3 kids that still get together regularly all have birthdays within 8 days of each other. They will all be starting kindergarten this fall in different school districts. We've seen each other through the births of 4 babies (including 1 set of twins!). They've been very supportive when Gabby was so sick and since Jack died. I'm going to miss seeing them so often now. Owen and Nichelle are a couple of Sarah's best friends. We're hoping to still see each other on week-ends. It just won't be as often.

Owen, Sarah, Gabby & Nichelle

Then today was even busier. We had a playdate at a local park followed by a birthday party at Chuck E Cheese for one of Sarah's friends. The playdate was a lot of fun. It was nice to spend some time with other parents who are also friends of mine and let the kids play. They brought paint and fingerpaints, and a fun, messy time was had by all. (Dirt + paint + play = messy kids) Then it was on to Chuck E Cheese. The best word I have for that place is overstimulating. And that's putting it nicely. You can't hear yourself think let alone what someone is saying to you in that place. Poor Gabby. During the birthday song part, she was leaning against me, and I had my hand over her other ear. She didn't even want to eat her pizza because of the noise level. Sarah had more fun there. They did both enjoy the rides, which were free. However, I don't think that I will ever have a birthday party there or take my kids there for any other reason. If you spend too much time in a place like that, it can damage your hearing. Seriously. It was that noisy. We were going to go to a circle supper with UU church folks this evening. We got home, and I threw together a cherry cobbler. But, while it was cooling, we all wound up taking really long naps instead. I was glad for the rest. While it was a late night for the girls due to the late nap, they are now quietly in bed and squeeky clean.

We're headed to CA for our car-trip vacation later this week where we will continue the social butterfly thing. Of the days we will be gone (about 10) I think that there's only one day where we won't be seeing someone we know or staying at someone's house. Some days we will be seeing more than one person. We will flit from place to place until we are home. And the next thing we know, Sarah will be starting kindergarten. Now THAT will be a change for all of us.

She's doing great!

Today we had our cardiology follow-up at Children's. To make a long story short, she's doing great! Her heart function looks good. Her EKG was good. Her energy level is good. Dr. Lewin was very pleased with how she's doing. So pleased, in fact, that we don't have to go back for a full year! Woo hoo!

I've been asked when she's going to need her next procedure. The answer is: we don't know. Dr. Lewin doesn't think that it will be until "late childhood" (think 9 or 10). He's hoping they can deal with the stent and put in a pulmonary valve at the same time. He said that they wouldn't do it in 2 different surgeries. Now, that's a relief.

Gabby was fine with having the echo done. She got to watch Winnie the Pooh while they were doing it. She didn't like the EKG much, though. She doesn't like when they take the stickers off. They pull on the skin when you remove them, and it hurts. So, she still has the stickers on while she takes a nap. I'll take them off later in the shower or bath. She was great for Dr. Lewin and getting her height and weight done, too. Dr. Lewin even got a hug from her. She's such a champ. (She got 4 Sesame Street stickers, too! Plus 2 sugar-free suckers.)

While we were in the cafeteria, we ran into Dr. Jefferies, one of the ICU docs. He was one of the docs who put her on ECMO all that time ago. He remembered us (and her diagnosis and even where her room was!). He was pleased to see that she's doing so well. Gabby even gave him 2 hugs. He just lit up. What I'm learning is that she's one of their ECMO superstars. ECMO was made to help kids like her, and she's had a wonderful outcome. Not all kids who wind up on ECMO do as well as she has. They don't all make it, and some have long-term problems. I'm sure that seeing kids come back for follow-up when they're doing as well as Gabby is makes a lot of what they do worthwhile for the staff there. Me, I'm just glad that she IS doing so well. It's nice to have something good like this happen this year.

Bye-bye binkies

Gabby was a binkie baby. We started her on them when she was really little because we had to keep her from crying due to her heart defect, and they were a help. She kept on with the binkies until well into last year. Her dentist and other doctors didn't have a problem with it, so we didn't wean her. Then, some while back, she started to self-wean. She'd go to sleep and not ask for one. She quit carrying one around. She seemed to just not be interested in them. She hasn't had one in her mouth since before Jack died.

The top drawer of the changing table has a window in it, and you could see the binkies in their little plastic bowl in the drawer. Tonight as I was getting her ready for bed, Gabby said, "I want a binkie." I told her, "You haven't used a binkie in a long time. I'm about ready to put them in the garbage." To which she replied, "I'll put them in the garbage." "Are you sure you want do do that, Gabby?" "Yes." So, I handed her the bowl of binkies, and she ran to the kitchen garbage and threw them away. When I found another one a minute later, she happily threw that one away, too. I told her what a big girl she is now. We said, "Bye-bye, binkies." to them. They are now truly a thing of the past.

This was taken last Dec.

Craft Day

A lot of today was spent doing crafts with the girls. Yesterday, a co-worker of Jack's, Kristy, stopped by for a delightful visit. She brought these sock puppet craft kits for the girls. They couldn't wait to get started. So, first thing this morning, I got out the kits and we went to town. All 3 socks in each kit got decorated. They think they're great. (Thanks, Kristy!) Here's a picture of one of Gabby's:

Also, as some of you know, Sarah gets 5 shiny pennies every night before bed if she's been a good kid. If she's been really good, she gets a queen (Canadian) penny in place of one of the American pennies. She'd been doing pretty good lately, and I told her that if she made it through a straight week with queen pennies, I'd buy her a Pricness toy. She was on the edge at times, but she did it. So, today we went out for the toy at Target. We wound up getting this set of 2 Princess puzzles that after you put them together, if you stack the pieces in a certain order, they make a 3-D castle. We managed to get the 2 puzzles together. We stopped before we got the castle part done because it was getting late, and we needed to eat. I don't think I've ever had such a "crafty" day with the girls before.

Cardiology Follow-up

Just to let everybody know, Gabby has a cardiology follow-up at Children's on Mon. afternoon. She'll be getting a chest x-ray, EKG, echo, and doctor's visit. I'll post here to let folks know how it went. Keep your fingers crossed that everything checks out ok.

Aquarium Visit

As some of you know, Gabby loves "fishies." Her favorite stuffed toy is a multicolored fish. Her favorite bathing suit has fish on it. And she loves to watch them swim. I recently took the girls to the Seattle Aquarium. They really enjoyed it, so I bought a membership.

Our friends, Tom and Gail, have been visiting from CA. They visit us every year on their way to Canada for their summer vacation. I decided to use my guest passes to take them to see the aquarium with the girls today. A fun time was had by all.

Our aquarium is a pretty nice. As you walk in, there is a floor-to-ceiling fish tank with many, many fish swimming in it. There are little benches to sit on while you watch. (I could sit there for hours sometimes. It's very relaxing.) I call it the Wall o' Fish. It's a name Jack would have liked. I even had Tom take our picture standing in front of said wall.

Another fun exhibit is of what happens when a wave occurs. This is a really long tank with a curve at either end. At the end where the wave is generated, you can tell that the wave will happen soon. Then, the wave is formed, and it travels the entire length of the tank to the other end, and we get to see what happens to the sea life under the surface as it rides out the force of the wave underwater. It's pretty cool. We were standing at the wave generation end. Every time Gabby could see a wave was coming, she'd say something like, "It's doing it!" and jump with joy and excitement. As soon as the wave came, both girls would just scream with laughter. They did this the entire length of the tank. When they saw the wave, they laughed loudly. Some of the attendees got as much fun out of watching my girls as they did watching the fish, if not more!

They also got to play in the tidepools, but they were more interested in playing with the water than touching the starfish. We also saw lots of neat fish in tanks. Of course, Gabby always wanted me to lift her up higher so she could see the fish better. And there was the obligitory visit to the gift shop. Sarah and Gabby both got a new book each, and Tom got Gabby her very own stuffed Nemo which is now a prized posession.

I've promised Gabby a fish tank after we get back from our CA vacation next month. I think she'll really enjoy it. I already have a place picked out where we can all enjoy it.

Sarah hamming it up

She could just be short

This was the week for the visits at Children's regarding Gabby's shortness. We've seen both genetics and endocrine this week.

Our visit with genetics was very reassuring. While she does have the heart issue and some gross motor delay and short stature, they don't think that there's any kind of genetic component here. Additionally, some of Jack's relatives were shorter than me, so it could just be that she was going to be short regardless of other issues that she might have. The fact that she is cognitively on track is very reassuring and points away from a genetic problem. Relief number one.

Today we saw the endocrine folks. According to them, she's growing at a good rate. Her growth velocity is in the 10th percentile, and she's growing on her own growth curve. While it's below the 3rd precentile, she's still on the right curve. Her weight is also maintaining well. They are certain that she doesn't have a growth hormone issue. In fact, the doctor says that she is on track to be my height or a little taller. That's not what her pediatrician told me, and I asked about it, but she was sure. What they really look at is how fast she's growing, and she's doing fine in that department.

So, while Sarah is really tall for her age, Gabby is just short. It's not a problem medically. She's just going to be short like much of the rest of her family. What a relief.

Gabby's Medical Journey Part 3

As I said in the last post, Gabby came off ECMO after a week. I was finally able to hold her after she came off the ventilator a couple of days later. She remained in the ICU for about a week after she came off ECMO then went to the floor then came home 3 1/2 weeks after she was admitted. She came home on several medications and a tube feeding. The tube feedings only lasted less than a month. She needed those so she could get enough calories to heal from her surgery and grow at the same time.

At first, we had fairly frequent clinic visits. Those became fewer and fewer as time went on. She slowly recovered from what is now referred to as a "stormy course." She's on absolutely no heart medications. What we are looking at now is that she has no valve between her right ventricle and the artery that goes to her lungs. She will eventually need a valve placed there, but not yet. They don't like doing it until they must because once they "open that door" she will need the valve replaced about every 10 years or so. She will also need to have the stent that is in her left pulmonary artery removed, and the artery will need to be repaired again. The stent has been expanded as far as it will go, and it will eventually not be big enough. She will need lifelong follow-up with a cardiologist, hopefully one who specializes in adults with congenital heart defects.

Gabby has also had problems with meeting her gross motor milestones on time. That's things like crawling, walking, jumping, etc. She's been in physical therapy off and on for more than a year to address those issues. She was in therapy through the school district for a few months and made great strides as a result. When she started in Feb. or March, she couldn't jump. Now she jumps all over the place. She will probably go back in the fall. I've also had her in gymnastics through the YMCA which has been a huge help. Between the two things, she really improved. This summer I have her and Sarah enrolled in beginning swim lessons.

Overall, she's doing very well, especially considering what she went through as a baby. I keep hearing from her daycare that she's really smart, and I can see it as well. She can keep herself quietly occupied playing by herself for a long time, especially for a 3 year old. We're fortunate that she hasn't had any problems beyond the gross motor stuff, and she adapts to that and is making improvements. I am so thankful for that.

Gabby's Medical Journey Part 2

Gabby had her corrective surgery for her tetralogy of Fallot (ToF) on 1/5/06. Sending her off to surgery was one of the hardest things I've had to do, but I knew that she needed the surgery in order to live. The wait seemed to take forever. There was another family there that was waiting for their son to go in for his corrective heart surgery. They had the same surgeon. They told us that the case before theirs was taking longer than expected. Our comment to them was, "That's our kid that's the first case." This was not a great feeling. Finally the doctor came out of surgery. He took us into a conference room to discuss what was done. I don't remember the conversation in all of its detail, but parts of it really stick out in my mind. He went over what he'd done in surgery. I asked whether or not he was able to save her pulmonary valve, which is the valve that's between the right ventricle and the artery going to the lungs. His comment was, "Oh, I destroyed that." Jack never forgot that comment and how he seemed to just take it as part of doing the surgery. He told us that when they were measuring her outflow tract, the 2 surgeons looked at each other across the table and asked each other how she was doing so well with the defect she had. The tract is supposed to measure 10 mm, and hers measured all of 2 to 3 mm. He also told us that "She's going to get sicker in the next 12 to 24 hours. I don't know how sick she's going to get, but she's going to get sicker." He then went over some of the tools that they had when this happened. His words turned out to be horribly prophetic.

After they got Gabby back to her room in the ICU and settled in, we were finally allowed to go in and see her. She was so swollen, I almost passed out. It was tough to see. I remember her nurse apologizing for her IV lines being such a mess, "but we've had more important things to worry about," she said. To which I replied, "Like what?" She answered, "We're having a hard time controlling her blood pressure." (To any parent whose child is going through this, if a nurse says this to you, stick around!) It had been a long day, it didn't seem like we could do much there, and Jack had to get Sarah out of daycare before they closed. We decided to head home in our respective vehicles. We told them where we were headed. In hindsight, I wish I'd stayed close, but no long term damage was done.

A quick diversion: At the time, we were living in the town of Redmond. For those who aren't familiar with the Seattle area, Redmond is located at the other end of a freeway that starts in Seattle called Hwy 520. Part of Hwy 520 consists of a floating bridge that goes across Lake Washington. Lake Washington dominates the Seattle area and is miles long and 1 or 2 miles wide. It's between Children's Hospital & the town of Redmond. There's the Seattle side and what's known as the eastside. I'd guess that the 520 bridge is a mile or 2 long, and there's nowhere to go if there's a problem.

So, I was headed home in my car. Jack was on his way to get Sarah. Then my pager from the ICU beeped. I was stuck in commute traffic on the 520 bridge, driving in the rain, when I was paged. I immediately called the ICU on my cell phone. The guy tells me to pull over after I told him that I was driving. "I can't! I'm in the middle of the 520 bridge!" I tell him. He says, "Pull over as soon as you can." About this time, panic is beginning to set in. I demand some sort of explanation, and he tells me that they need me to come back to the hospital. "Why?! What's happened to my baby?!" I demanded. He got one of the nurses on the phone for me. She told me that Gabby had coded, they'd needed to do brief CPR, they had her back, but they needed to start her on ECMO. Yikes! This was my worst nightmare. I'd heard horror stories about ECMO. Basically, it's a bypass machine that sits by the bed. The patient's blood has to be really thinned while they're on it, and that can cause all kinds of complications. I was terrified. I got back to the hospital in record time. Took the first exit, turned around and went back. I half ran back to the ICU. Different docs came out who I recognized, and I again found myself in that little conference room. The other surgeon who had been in on Gabby's surgery exlained everything to me. The only other option was to beat her heart with drugs, and they figured that her recovery would take even longer that way. While it was scary, of course I consented.

The doctors then turned her ICU room into a mini operating room and put her on ECMO right there. Pretty amazing, huh? I waited until they were done and had her cleaned up. (I later found out that the nurse who came on to take care of her while this was going on had no room to enter in what had been a large room because it was so packed with staff trying to save my child's life.) I went in to see her after they were done. It was even more tubes. (At the most, I counted a total of 12 lines going into her little body.) With all of the equipment in the room plus an ICU nurse and ECMO tech, it was pretty crowded. But I was told that they were able to stop some of the medications as soon as they started ECMO. The theory was that it would give the right side of her heart a chance to rest. ECMO (extracorporeal membranous oxygenation to use the full term) takes blood from the right side of the heart and takes the place of the lungs, then puts it back into the left side of the heart to be circulated to the rest of the body. It's used sometimes on really premature infants who have really immature lungs.

So she stayed like that for a few days. She was medicated so she wouldn't move, and I don't think she remembers anything or felt anything thanks to the morphine and ativan that she got in pretty good doses. She didn't even open her eyes. I'd come for hours twice a day, stand at the head of her ICU bed and pet her head for hours. It was the only place that wasn't punctured. And I loved the way her wavy hair felt under my hand. Before her surgery, when I'd wash it, it would feel so springy. Kind of reminded me of her father's hair.

They tried to take her off ECMO after a few days, and she failed miserably. They couldn't understand why. So, to find out why, they took her to the catheterization lab on ECMO. This was a major production. It took something like 6 people to safely transport her and the equipment. I called it the Gabby train. When I saw them taking her like that, that was one of the times that I fell apart because I realized how sick my little girl really was. Well, remember that trouble spot in her left pulmonary artery that I talked about in Part 1? It was a trouble spot again. For some reason, her left pulmonary artery (LPA) had collapsed, resulting in not enough blood getting to her lungs, which is why she failed coming off ECMO. They placed a stent, like they'd put in an adult's coronary artery, in her LPA. After that, she slowly started getting better. About 6 days after putting her on ECMO, they tried to take her off again, and it was really close. I've never seen a surgeon agonize over a decision the way her surgeon, Dr. Cohen, did that day. She was so on the fence in terms of coming off. Then one lab value went up showing that she was under some stress, so they decided to keep her on for one more day. The next day, she sailed through the trial of coming off, and they removed her from ECMO that day, a week after her corrective surgery.

To be continued

Gabby's Medical Journey Part 1

Gabby's heart defect, tetralogy of Fallot, was diagnosed during a "routine" 20-week prenatal ultrasound. My chances of having a baby with a genetic defect went from 1 in 84 to 1 in 3 instantly. We had the amniocentesis done a few days later, and we found out that other than the heart issue, everything looked fine. By the time she was born, I'd had a total of 8 ultrasounds, including at least 3 by her pediatric cardiologist. The funniest one was when he had to get her to move to get a better look at her heart. As he was re-scanning my belly to look at her heart, he started to laugh. I asked what was so funny, and he answered, "She just shook her fist at me!" That's my Gabby.

For those who don't know, here's a brief explanation of tetralogy of Fallot (abbreviated ToF). Tetralogy means 4 things. In this case, it's an aorta that goes into both the left and right ventricles (it's supposed to only go into the left one), a narrowed outflow tract in the right ventricle, which goes to the lungs (resulting in reduced flow to the lungs), an opening between the 2 ventricles, and overgrowth of the muscle in the right ventricle because it's working so hard to pump blood through the narrowed outflow tract. In Gabby's case, she also had an opening between the 2 atria, but it was kind of minor compared to everything else. What all of this causes is circulation of blood that is not oxygen rich. Not enough blood is getting to the lungs, and if the baby cries (and at other times), that outflow tract narrows even more, causing the oxygen saturation to drop even more since the body is circulating deoxygenated blood. At least blood is able to circulate thanks to the opening between the ventricles. There is a lot of shunting that goes on, which means that blood is forced from the right side of the heart to the left side. All of this results in what are called "tet spells" where the baby looks more blue than before or even loses consciousness due to lower oxygen levels in the blood. You have to try to not let the baby cry much, which can be challenging. This is the defect that a lot of "blue babies" have. They're the babies that look fine when they're first born, then a week or 2 later, they start looking blue. Wikipedia has a pretty good explanation, complete with illustrations. I'm just glad that she was diagnosed before birth so we were prepared.

Gabby was fine when she was first born. She had to be on bilirubin lights for jaundice for several days, just like her sister. She looked great at her first heart check-up. Then she started having tet spells. They were kind of scary. Diaper changes were challenging. We took her back to the clinic, and they started her on medication. During the first visit where her saturations dropped, I saw them drop into the 50's then come back up. The medication didn't help much. She was hospitalized the first time just before she turned 1 month old. She had her first heart cath during that stay. They found a narrowing in the left pulmonary artery, which goes to the left lung. They took a rotor blade to it and expanded it with a balloon in the hopes that it would last her until she was 4 months old, the goal age for her corrective surgery. It was not to be.

I've been known to say that the cath procedure gave us a less-worried Christmas. On New Year's Day, her 2-month birthday, she had her most serious tet spell to date. She woke up from a nap in the early afternoon crying. She was in her carseat in the stroller at the end of the table. We had just finished having lunch. (We had also found out that she had a problem with reflux. This did NOT help matters.) Anyway, Jack picked her up and started flying her through the air in an attempt to get her to calm down. Then she went kind of gray. Jack said, "I don't know if she's asleep or unconscious." I was immediately on the phone to get a hold of the cardiologist on call. I had Jack flick the bottoms of her feet to see how unresponsive she was. It made her cry. That was better to hear than nothing at that point. When the cardiologist heard her cry, she had me calm her down (breastfeeding rocks for this) & transport her to Children's since we were only 20 minutes away and she was more conscious than she'd been. I came very close to calling 911 that day, though.

When we arrived at the ER less than an hour later, I was amazed at how quickly we were ushered in. They were expecting us and knew that she needed immediate attention. As soon as we got to an ER room, they had her hooked up and monitored. She was fine for awhile. But they still wanted to admit her for observation at that time, but they weren't sure if it would be the floor or the ICU. We also had Sarah to care for, and she wasn't quite 2 yet. Keeping her occupied wasn't easy, so Jack took her home since we didn't have a ready babysitter to call at the time. As I was sitting there in the ER with Gabby later, I saw her oxygen sats start to drop again. I quit looking when it hit about 40. All I could think to do was pick her up and hold her with the thought that if she was dying, at least she'd die in my arms. (The cardiologist said that the lowest she saw was 38.) This was not good. She bought herself a bed in the ICU that evening.

One of the options that the cardiologist said we had was to maybe sedate her and put her on a ventilator so they could better regulate her oxygen levels. But it was an option, not a treatment plan just yet. So, when we got to the ICU just after 8 that evening, I noticed a bunch of medical personnel in scrubs gathered at the door to the ICU. Being a nurse, I knew that something was up. I asked, "What's going on?" The doctor said, "We're going to intubate her." At that point, I put my hands up and said, "Wait. I was told that this was a possibility, not definite. I haven't signed a consent for this. I need to talk to my husband." Now, I wasn't being foolish here. I was watching the monitor and saw that her saturations were in the 80's and had been there for awhile. I wanted to be sure that this was really necessary. They were willing to wait, so it was obviously not an emergency. I called Jack. He wanted to know what her regular cardiologist, Dr. Lewin, thought of this. The guys in the ICU got him on the phone for me which really surprised me. Dr. Lewin said that he'd trust this doc with his child's life, and if he said this was what needed to be done, then it probably was. So, I told them that it was ok to intubate her and put her on a ventilator, but I wanted to nurse her first. The doc then asked, "When did she eat last?" I replied, "About 8:00 in the ER." He told me that she couldn't eat for 4 hours beforehand, which was even more proof that this wasn't an emergency. So, we waited until midnight when the same bunch of folks in green scrubs gathered at her door. I looked at her monitor, and it was at 88, which is where it had been since we'd been admitted. I asked the docs, "Her sats have been in the 80's since we got here. Is this really necessary?" I was then told that the fellow was checking with the attending for that very reason. She wound up not having a tube down her throat until her surgery 4 days letter. The lesson here is to always advocate for yourself or your child if you don't understand why something is being done.

To be continued

The New Gabby Blog!

I have decided to start this blog as a place to talk about any health issues that Gabby might have. As many of you know, she was born with a congenital heart defect called tetralogy of Fallot on 11/1/05. In addition to her heart issues, she's been delayed on almost all of her gross motor milestones, and she's very small. (At the age of 43 months, she was the size of a 27 month old.) In the next 16 days, she has 3 appointments at Children's Hospital of Seattle. The first 2 (7/21 & 7/24) are to evaluate her short stature in both the genetics and endocrine departments. Then she has a cardiology follow-up complete with chest x-ray, EKG & echocardiogram on 8/3. At this time, she has cardiology appointments every 6 months. I have no idea how often, if at all, we will follow-up with the other departments.

I intend for my next posting to be about what has happened with Gabby thus far. It's been a long and winding road, but she's been doing well for some while now, which, is, of course, the good news.

And other postings will talk about life in between medical stuff. Fortunately for us, the medical stuff doesn't happen anywhere near as often as it used to. While she may have some medical issues, she is a bright, energetic, smart kid. Plus she has a sister, Sarah, who is 20 months older than her and who also has her own adventures! I'll talk about them here, too.