Gracie's Adventures

New Cath date

2012-01-24T08:03:00.000-08:00

Wow, what a crazy weather week for us! The snow storm, ice storm and wind storm left us without power for three days. Thank goodness we did reschedule Gracie's cath, because it would have been several days before we could get home!!

G is now scheduled to go in this Friday 1/27 for her pre Fontan heart cath and she will also be undergoing an MRI. Please keep our sweet girl in your thoughts and prayers.

Snow = No Go for Cath

2012-01-17T06:29:00.000-08:00

We are experiencing what our weather forecasters are calling a "major snow event." Our roads are
icy and we awoke to a fresh blanket of snow. There is a potential of up to 15 more inches in the next 24 hours in our area. So, we decided to reschedule Gracie's pre Fontan heart cath. Thanks so much for checking in on us, we'll update when we have the new cath date.

It was definitely time...

2012-01-09T20:47:00.000-08:00

There was no question, it was definitely time! The transition to a big girl bed had been on my mind and in the works for quite a while. However, the last few months it seemed like Gracie had a pretty full plate with many changes and new activities so we decided to wait a little bit longer when things had settled down.

To recap, G started preschool in the fall going from being with mom full time to being at school 3 to 4 days a week. Here is her first school photo, love it!

G said goodbye to her beloved binky for good.

We started working on and making progress with potty training.

We traveled and took some amazing trips.

And, there was a little surgery in the mix as well! So, the big girl bed transition was put on the back burner. After multiple shopping trips and going back and forth on whether to get a twin or full sized bed... we found the perfect bed for Gracie.

Gracie loved trying out all the mattresses and shopping for a bed. She was so excited about her new bed that when you would ask her what she wanted for Christmas, she would always say "a big girl bed!" And, even more perfect we were able to have the bed delivered on the eve of Christmas Eve. Luckily, the delivery guys came during G's nap because I wasn't sure if I was going to be able to talk them into going along with pretending to be Santa's elves.

The morning of the delivery when we told G that she might be getting her Christmas wish and that her big girl bed could be arriving soon, there was a little concern and apprehension.

But, once G realized that she and Sophie would have more room to spread out she was on board!

When the big reveal came, G was mostly interested in the big red bow. And she may have told the little red elf on her bed that her new big girl bed was only for her and Sophie.

We were worried that it may take some time for Gracie to warm up to her new sleeping arrangements, but she absolutely loves her big girl bed and she has never slept better.

Our little girl is growing up!

Cardiology and upcoming cath

2011-11-30T14:00:00.000-08:00

On Monday we went to the hospital for Gracie's six month cardiology appointment. The past couple of weeks we have been getting Gracie ready for the appointment. Gracie's new favorite book is "Elmo goes to the Doctor" and she has become a pro at taking Sophie and Mr. Bear's blood pressure. One of Gracie's therapists also gave us the idea to have G help pack her backpack for the hospital and tell us the things she would like bring to the appointment. Gracie decided she needed to bring: her blankie, Sophie, the Ipad, some snacks and a picture of Santa Claus. Good thing I asked, I'm not sure that the Santa Claus picture would have been on my list :)

Gracie was such a trooper and did so well at the appointment! It's hard for me to believe that a year ago she was so upset during these appointments we needed to have her under sedation for the echo, EKG and sat check. Now she is as cool as can be. She smiles and high fives all the nurses and her cardiologist, and doesn't mind the testing... with only the help of a favorite Elmo video.

Here are the numbers:
Weight - 32.1 lbs
Sats - mid to upper 70s at rest, down in the 60s after climbing a flight of stairs
Age - Just over 3 (40 months)

The combination of those three factors have us tracking towards a Spring 2012 Fontan surgery. Gracie has been scheduled for her pre Fontan heart catheterization on January 17th. During the cath her doctors will be measuring the pressures in her heart and lungs and looking for any narrowing in her pulmonary arteries and Glenn site. The cath will help her surgeon plan for the surgery and make the determination that she will be a good candidate for the Fontan.

It is surreal, this surgery that was once a foreign term scribbled on our unborn baby's heart diagram when I was four months pregnant, and described as the heart surgery she would need when she would be older... is now almost here. This surgery has never been far from my mind, but yet it still seemed somewhere out there in the distance. Now that we are making plans and setting dates, it is tangible and real, and I have a mix of emotions.

I am sad and my heart is heavy that Gracie and any other three year old has to endure heart surgery and a lifelong illness.

I am thankful those surgeries exist that saved Gracie's life as a baby and I am thankful that I have a beautiful daughter who I love more than anything in the world. I am thankful for the good health Gracie has had since her Glenn surgery. I am thankful for our everyday life and adventures we have enjoyed since leaving the hospital two and a half years ago.

I am amazed by the smart, sassy, sweet and oh so typical three year old we have on our hands these days. I am amazed by Gracie's courage and determination. I am amazed at everything she has overcome.

I am scared out of my mind about this surgery and risks, the aftermath, and the potential long term implications of the Fontan circulation.

And in the midst of be sad, thankful, amazed and scared, I am hopeful. Hopeful that this will be Gracie's last surgery for a long time and that the Fontan circulation will work well for Gracie. I am hopeful that this surgery will go smoothly and hopeful this will be a start of a new chapter where we no longer have an imminent surgery on the horizon.

October

2011-11-16T10:51:00.000-08:00

October really flew by for us! Pumpkin patches, Halloween festivities, two trips, and keeping up with G's activities kept us on the go.

We visited our favorite pumpkin patch early in the month. You know you have a daughter of two finance people, when the first thing Gracie wants to do upon arrival is take a full pumpkin patch inventory :) She is counting strong up into the thirties these days!

G was very excited that her favorite saaa-pie-der found it's way back to our front porch again this year. And every night before bed, she would peek out the front door window and blow goodnight kisses to our sparkling eight legged friend.

My silly little pumpkin!

We spent a few days in Leavenworth taking in the gorgeous fall leaves and reminiscing about how this was where we took Gracie on her very first vacation, when she was 15 months old!

And our trip wouldn't have been complete without a few cheesy pretzels in the Biergarten.

Yum!

The weather was a little soggy for our hikes in Leavenworth, but we weren't about to let that stop us.

That just meant we got to fully test our new rain gear :)

Later in the month, we made a trip to...... Disneyland!!!!

Gracie was a little unsure of rides, but loved hearing all of the fun music and taking everything in. And there was A LOT to take in :) She will tell you though, that her favorite part of Disney was the popcorn and taking the bus from the parking lot to the grounds. Hmmmm....

Gracie was very excited to see Mickey and Minnie Mouse. Although we did have a little situation where Minnie ran out of time with us and wouldn't high five Gracie. If you know our little girl, you know that it is a major faux paus to not return one of Gracie's high fives. There were a few tears but Minnie made it up to us by mailing us an autographed picture. Apology accepted :)

Granny and Papa and Gracie's cousin's joined us in Disneyland.

A pretty great place for a family reunion!

The Halloween decorations at Disney were second to none and got us in the mood for trick or treat.

Here is our hula Gracie, ready for action. This year trick or treat too funny! Gone was our bashful G when she realized that the magic words meant candy :) She kept asking "nanother house, peeeeease?"

In addition to trick or treating in our neighborhood, Gracie also went to a cute Halloween party at Little Bit where she does her horseback riding.

I had so much fun decking out Gracie's walker in Hawaiian motif. A hula girl's got to have her palm tree and pineapple, ya know.

Happy Fall!

Preschool Update

2011-09-29T12:36:00.000-07:00

The past couple of weeks have been really great for us. While Gracie had a tough start warming up to preschool, she turned the corner and is doing so well. Every day she is getting more comfortable and confident. The goodbyes used to be downright painful, but now after her goodbye hug and kiss she is ready to dig into story time and see what her buddies are up to. And I am no longer coming to class halfway through the day!

Even just the short amount of time that Gracie has been in preschool we are amazed by what she is learning. New songs, new art projects, new games, and Gracie loves playing with her friends at school. We've seen progress with her fine motor skills and speech, and G has been using a walker at school which seems to be helping with her balance. Because school is going so well, we are bumping up her school time from three days a week to four. This will translate into an even busier schedule for us with school in the mornings and afternoon sessions of private OT, PT, and speech in addition to Gracie's swimming and horseback riding. It is a crazy schedule, but she is happy and thriving and that is everything we could ask for!

The start of preschool

2011-09-13T14:02:00.001-07:00

Last week Gracie started preschool so we now have a full fledged preschooler on our hands! Gracie is attending preschool three days a week through our school district from 9am to 11:40am. I really love her teachers and is it great that her class size is small with only six kids. The first day was very exciting.

We found Gracie's name on the apple tree.

Got her backpack all settled in her cubby.

And Gracie jumped right in at circle time.

Gracie loved taking a wagon ride out on the playground at recess.

Every time I looked she had a new friend riding with her.

The slide was a big hit too.

So that's our girl at the end of Day 1. Happy, blue marker all over hands, talking non stop about using the glue stick, snacktime, recess and new friends.

And here we are at the end of Day 5... bringing flower arrangements to Gracie's two teachers as a peace offering for what has been a rough four days. On Day 2 of preschool, Gracie decided that under no condition was she going to be happy about her mom leaving her while she was at preschool. The tears, begging and pleading for 'mommy to come back' that has been heartbreaking for both of us. As much as I want to run in that room and scoop her up, I know in my heart she needs to work through this.

Gracie's teachers have been amazing working with her and trying to keep her distracted and feeling like a part of the class. We have an agreement with Gracie that she will be at preschool without mom until after recess (1 hour and 20 minutes) and then I will come back and be with her for the rest of class. She is slowly making progress and yesterday the gaps between when she was crying were getting longer. Ouch, it is so difficult to watch your kiddo having a tough time. I have been staying in the teacher's room right next to the classroom which has a window into the classroom so I can keep an eye on things. The other kids in the class are really sweet and keep trying to cheer her up, one little boy brings her the Mr Potato Head (which she loves) and another little guy has been bringing her balls to play with. I am so hopeful that Gracie just needs a little more time to make this adjustment and that preschool soon will be a place where she flourishes. Hang in there, G, we love you so much.

Hawaii

2011-09-12T13:40:00.000-07:00

I am still in awe we were actually there.

That we were surrounded by tropical paradise, listening to the waves crash, and doing some of Gracie's favorite island activities - counting palm trees, swimming in the salt water lagoon and looking for Rico the red parrot.

You see this was the trip we dreamed of taking with Gracie...

What seems like in many ways a lifetime ago and yet at times still near, three years ago my husband made a promise. He made this promise as we waited those long hours while Gracie was undergoing her first open heart surgery that our daughter was going to get through all of this and that some day we would take her to the most beautiful place we had ever seen. Some day Gracie would be out of the ICU and away from the hospital, and we would watch the ocean breeze in her blond curls.

There's no denying that dreams really do come true! To celebrate our upcoming five year wedding anniversary and how incredibly blessed we are to have this precious little lady in our life, we took that trip and went back to the same resort where we had honeymooned in Kauai.

Another special part of our trip was that we were able to spend a few days on Oahu visiting my dear childhood friend, Holly, and her family and watch as our kids played together at close to the same age as when we first met!

Below is our "Gracie's goes to Hawaii" photo video. Be sure to hit pause on the music at the bottom of the blog so you can enjoy the Hawaiian tunes on this video. Also keep watching the video for a couple slides after the music stops to see who was keeping Gracie entertained on the plane :)

Make a video - it's fun, easy and free!
www.onetruemedia.com

Gracie's Third Birthday Elmo Fiesta!

2011-08-07T15:07:00.001-07:00

Last weekend we celebrated Gracie's Third Birthday with Granny and Papa from Ohio and G's cousins. The Elmo Fiesta was a big hit and Gracie hasn't stopped talking about her Elmo dress and the Sesame Street decorations we still have up :)

New set of wheels from Granny and Papa.

I'm one, two, three!

More cupcake, peeeease!

My parents are sooo silly!

Mr Potato Head! My birthday wish came true!

Home!

2011-08-03T08:20:00.000-07:00

I am saving time by cutting and pasting from our Carepages.com updates:

We are extremely happy to report that surgery went well today and that we are now home spending the night in our own beds! Gracie was such a trooper today and we are so proud of how brave and strong she was. By the time Gracie went back for surgery she hadn't eaten for 20 hours and was long overdue for a nap, and still our G held up amazingly well. It is never easy to hand your baby over for surgery. However, knowing that getting this wire out would make Gracie so much more comfortable and that we were in the thoughts and prayers of so many made things a little easier for us. It was also very comforting to us that we saw over a dozen different doctors and nurses today who all remembered Gracie from when she was a baby and were genuinely concerned and interested in how she is doing.

Recovery at this point for Gracie is pretty straight forward. She'll need some extra rest these next couple of days and we will be watching her closely for any signs of infection. If infection is going to be a problem it will usually show up within 5 to 10 days after surgery. So we have our fingers crossed that there will be no infection this time! Before all of this happened we booked a trip to Hawaii to celebrate our 5 year wedding anniversary and we are optimistic that by then Gracie will be fully recovered and ready to don a grass skirt.

I've added several pictures of us keeping our sweet girl entertained throughout the day. Thank you again for your kind thoughts and prayers!

Kisses from mama waiting to go back to surgery center.

Blowing bubbles with daddy before surgery.

Snuggled up with daddy in her hospital gown, reading Gracie's favorite book "Is there a Gorilla in the Band?"

Watching Sesame Street on the Ipad waiting for anesthesia.

One very relieved mama that surgery went so smoothly and that we are heading home soon!!

Pre Op Day

2011-08-01T20:54:00.000-07:00

Today we had our pre op appointments at the hospital getting ready for Gracie's surgery tomorrow, and they went really well. That is saying a lot for having spent 5 hours at the hospital on a gorgeous sunny day on you and your daughter's birthday!! I had been doing a pretty good job of not bemoaning the point that we were actually having to spend Gracie's third birthday busy all day with appointments at the hospital, but there was a little part of me that just felt sad that this was the case. Anyways, when we arrived at the cardiology clinic they had a wonderful surprise for us - a gift bag of treats for Gracie for being at the hospital on her birthday! It made my day and lifted my spirits just to have the hospital acknowledge G's birthday in such a nice way. The gift bag included a soft bear that sings "Don't worry, Be Happy" (I think this bear must be more for parents :), a book and some cute birthday blocks.

Gracie did fabulous through the EKG, XRays, and the cardiology clinic checks. We again brought Gracie's doll Sophie and would role play each test with Sophie and then ask Gracie to let us know when she was ready for her turn. This method really works well for Gracie and helps her understand what is happening and helps her feel more comfortable. More comfortable = zero tears, hooray for that! Our biggest milestone for the day was about the easiest blood draw imaginable. I really wish I could have known two years ago that blood draws were going to some day get easier. After Gracie spent so much time in the hospital as a baby all of her veins were completely shot, so any time we had a blood draw it was a major undertaking. And by that I mean that we needed to have an entire team of IV specialists and supervisors trying to get a blood draw out of poor G. At one time they told us that she held the record as the second toughest kid in the hospital for getting a blood draws :( Anyways, today was a totally different story thank goodness!!! All of the time Gracie has had off must have healed her veins because they got her on the first try and were able to get labs for three separate requests. Again, no tears at all from Gracie!! She whimpered a little after the needle had been in for a minute, but went back to watching Barney on the IPad. Amazing!

We spent a long time talking to Gracie's heart surgeon and covered a lot of ground. We talked not only about her surgery for tomorrow but also her Fontan coming up in the next year. We always enjoy talking to Dr. M and appreciate the time he takes to answer all of our questions. Gracie's procedure tomorrow is a relatively simple procedure and should require a small incision. Gracie is always going to be at a higher risk of infection with her history, but we are so hopeful that this will not be the case with her surgery tomorrow. Gracie's surgery is at noon tomorrow and we will be in recovery for a few hours with a possible overnight stay. We will keep you posted!

Three!!

2011-07-27T08:01:00.001-07:00

Look who is going to be a birthday girl very soon!!

I had this super cute dress made for G for her big day. We are a planning a little Elmo Fiesta with family to celebrate and of course she needed a special outfit. I sent this picture to the woman who made the dress and now Gracie is the model on her website. Check it out:
http://www.etsy.com/listing/74407244/applique-elmo-red-gingham-aline-dress

Surgery 8/2

2011-07-26T14:05:00.000-07:00

We could sure use your positive thoughts and prayers next week for an upcoming surgery for Gracie. Gracie is going in for surgery next week to remove a broken wire in her sternum. She has been having problems with this wire for the last month, and it has reached a point where the wire needs to come out. A bit of background for you non heart folks out there, after heart surgery metal wire is used to hold the sternum together while the bone is fusing back together. Once the bone is healed the wire remains in place and usually doesn't cause any problems. In heart surgery for babies and children, as the child grows it is common for the metal wire to break. Most of the time when the metal wire breaks it doesn't cause any issues and rarely leads to any kind of intervention.

And then there is us...

About a month ago we had a scare related to a broken wire in Gracie's chest. As many of your know, hiking is one of our most cherished family activities.

From the time that Gracie was less than a year old and could hold her head up unassisted we have been out on the trail with G riding around in a hiking backpack.

We frequently plan our weekends, free time and vacations around taking Gracie for a little hike. Gracie absolutely loves it and we have had her out countless times without a problem.

For Father's Day we decided to get Paul a new backpack for G with an internal frame to help better balance her nearly 30 pounds. The whole family was very excited, we found some new trails and we were having a great start to our summer.

Sadly the evening after this picture was taken during a hike, Gracie developed a huge welt on her chest that was most likely caused from a buckle on her new backpack rubbing against an area on her chest where she has a broken wire. We were absolutely devastated that this happened. Our doctors have reassured us that there is no way we could have known that buckle would have been rubbing on the exact spot where she had a broken wire and not to beat ourselves up. Easier said than done :(

After a couple weeks the swelling did go down but this past weekend Gracie was trying out a new walker that will help her be mobile at preschool, and unfortunately she experienced the same swelling. So, the wire needs to come out.

Granted this wire removal surgery is a very small procedure compared to what she has been through in the past. However, Gracie has battled sternal wound infections after surgery. Every. Single. Time. With heart surgeries 2 and 3 Gracie had extensive interventions to fight the infections and was in the hospital for weeks. So it is not a small deal for us to think about her having even a minor surgery that will be in area where she has had problems with infection.

As nervous and upset as I am about this upcoming surgery, I also have a sense of peace that this will go smoothly. Gracie is older and stonger and her immune system is more revved to be able to handle an infection should one arise. Maybe this will be the time that a surgery will go textbook for us. Maybe that will be the comfort I need to know when the Fontan comes everything will be okay.

Grandparent visits

2011-07-13T13:40:00.001-07:00

Gracie was a very lucky little girl and recently got to spend time with both sets of grandparents in the same month!

First up, was time with Granny and Papa visiting from Ohio. Gracie had her very first trip to Pike's Place market on a gorgeous sunny day!

This is one of the largest farmer's markets in the nation and I can't get enough of the gorgeous flowers and views of the Puget Sound. I think Gracie may have been in sensory overload in this picture, it's a lot to take in!

Nothing like a pink princess crown from Granny to make your day!

Granny and Papa were able to come to Gracie's horseback riding. She was so proud to show them how well she is riding and personally introduce them to Ebony.

Next up with the Grandparent visits was a trip to Portland to see Grandma and Grandpa.

And her BFF dog pal, Jakey who Gracie LOVES to skype. Although seeing this sweet guy in person is so much more fun!

Lots of hugs and love!

We even had a chance to make it to the Portland Rose garden, but alas with our rainy spring the roses were not ready yet. We still have fun walking around the gardens sans roses.

Gracie's Heart Story

2011-07-06T13:36:00.000-07:00

I've been working on Gracie's Heart Story for awhile now and it is now complete under the "Gracie's Heart" Tab. Whew, it's a long one! Grab a cup of tea or some popcorn because it may take you awhile :) We didn't really start blogging until after Gracie's Glenn surgery. Prior to then we were using a carepages account when Grace was about six weeks old going through her second heart surgery to update family and friends about her condition as emailing and calling was getting difficult. In hindsight I wished we had started blogging sooner to be able to better connect with other heart families. We have met some amazing heart families through blogs and have learned so much through each of their stories!

Happy Fourth of July!

2011-07-01T07:01:00.001-07:00

Wishing everyone a fun and safe Fourth of July weekend! We are actually going to have some sunshine here. Who hoooo!!

My girl

2011-06-27T07:24:00.000-07:00

Getting Back to Normal

2011-06-17T13:17:00.000-07:00

This past week following our cardiology appointment has been blissfully simple. After spending the last few weeks with my mind racing waking up at 2am wondering the "what ifs" of whether surgery or anything else could be on the near horizon, it's been awfully nice to be able to focus on something a little lighter. Like how incredibly cute G looks in her new pink flamingo tutu swimsuit at her swimming lesson.

As a heart mom it seems as though the worry will never quite completely go away. But taking things day by day sure helps to be able to appreciate what you have right now and enjoy all of the little things.

Blowing bubbles!

Cardiology Apointment

2011-06-14T14:02:00.000-07:00

Gracie and Daddy with the "Big Fishy" at the Hospital

Yesterday's cardiology appointment went very well, and I owe a big thank you to everyone for the positive thoughts and prayers. They worked! We arrived at the hospital at 7:30am with Gracie NPO (hospital talk for no food or drink since the night before). For Gracie's last three heart appointments we have needed for Gracie to put under sedation for the testing to performed. The testing that is done (echocardiogram, EKG, sats, and blood pressure) can take up to an hour, and Gracie needs to be very still during that time. Gracie is usually a very happy go lucky and mellow little girl, but when you get her near the hospital that can all change pretty quickly. While it is completely understandable why being at the hospital would be upsetting for G, we hoped that someday we would be able to make her more at ease during these appointments so we wouldn't have to use sedation. This time we had a couple of new tricks to help her feel more comfortable.

Gracie's BFF, Sophie

Enter Sophie, Gracie's best doll friend. As we started the appointment first Sophie got on the scale and then Sophie got her height checked. Next it was Gracie's turn, and much to our surprise Gracie was totally okay with all of this. Normally the tears would have been flowing and Gracie would have been begging for Mommy to hold her, but yesterday all was well. So onto the echocardiogram room we went, where the nurse reminded us that if Gracie got upset and couldn't hold still we would need to have her sedated.

A mom's BFF, the IPad

Enter our second trick of the day, the IPad. My husband, my hero :) , surprised me with an IPad for Mother's Day because he knew that Gracie likes to look at pictures when we are at doctors appointments and the IPhone screen is not very big. So we loaded up with IPad with every video we have of Gracie and her horse Ebbie and some of our other home videos and brought it to the appointment. First up, sat check. Sophie's sats looked good so we moved on to Gracie - no problem, next. Then we took a look at Sophie's heart with the echocardiogram and moved onto Gracie. The Ebbie videos were rolling and Gracie was completely entertained.

It was amazing.

I was in complete awe that Gracie was just lying there completely cooperative watching her Ebbie videos for the next half hour during the echo. They finished with the echo and at that point we were able to bring out the snacks and let Gracie eat since we weren't going to need sedation. Gracie was so busy eating her cheese cubes that she didn't seem to mind having her blood pressure or the EKG done. Wow, is all I can say. We have never had an appointment go this smoothly, I'll take it!

As a side note, it was awesome to be able to tell this story at Gracie's horseback riding today and let the volunteers and her therapist know another example of what a huge impact her riding has had.

Okay... now onto the appointment stuff. Because we finished so early with testing by not having sedation, we had some extra time before meeting with Gracie's cardiologist to visit with our heart friend Maddie and her mom, Katie. Maddie is recovering from the Fontan and hopefully is on her way home today. It was so nice to be able to catch up with them.

So when we met with Gracie's cardiologist the first topic was her weight. Gracie weighs 27.5 lbs. We were completely shocked by this, six months ago she weighed 27lbs. At the rate she is outgrowing clothes, looking bigger, and feeling heavier, we were expecting her to weigh in at 30lbs. While this is surprising to us, her cardiologist does not think this is a big red flag but does want us to check in with our pediatrician and a nutritionist. The reason Gracie's weight is becoming more and more relevant is that her next heart surgery will take place when she reaches 30 to 33lbs. So we fully expected her to be on the borderline for that weight, but she was not. As far as her lower sats, her cardiologist says that being in the high 70s is okay. If Gracie starts coming down into the low 70s regularly then we need to reassess. But for now, low eighties and upper 70s is fine. Gracie's echo and EKG looked fine, so he wants to see us back in 6 months unless there are any major changes. He anticipates that surgery will be Spring or Summer 2012, but again it depends on her weight and what her sats are doing.

We did discuss that we are considering getting a second opinion from Stanford for Gracie's Fontan surgery, and Gracie's cardiologist was fine with that and said he would assist if needed. It is a lot for us to think about and it is going to be a difficult decision so I am glad that we don't have to make it right now. Gracie's cardiologist did say that of all the surgeries she has had, the surgery itself of the Fontan is easier than what she has been through in the past. However the recovery could be trickier depending on how her body adjusts to the new blood flow.

For now, I'm going to try not to stress myself out about the hospital decision... and just focus on the very positive things that happened yesterday - Gracie was happy, no surgery soon, and her heart function is doing okay. For being such a good girl we took Gracie to the hospital gift shop and let her pick out whatever she wanted. She immediately went for the Sesame Street characters and grabbed Big Bird and said "Lucky Bird! Take you home!"

We love this little girl to the moon and back and then some.

To the Falls

2011-06-12T13:19:00.000-07:00

We decided today would be a great day to take a hike. Get out and enjoy the good weather, let G enjoy riding around in the 'pack, and take our minds off the big appointment for tomorrow. So off to Snoqualmie Falls we went.

Unfortunately, the trail we wanted to take down to the base of the Falls is closed... until March of 2013!!! Oooops, I guess we should have known that. But sometimes when one trail is closed you can end up finding others you never knew existed. So off we went in a different direction.

Thank you for all of your kinds thoughts and prayers this week. I definitely feel more at peace. Whether surgery for Gracie is sooner than later, or later than soon, we've changed directions many times before... and it will be okay.

Great Resources Tab

2011-06-10T14:49:00.000-07:00

I recently added a new tab at the top of Gracie's Blog called Great Resources. I wanted to share some of the resources that have been so helpful to us on our heart journey. These are not heart specific and deal with childcare, physical therapy and speech therapy. Check it out!

The number seven

2011-06-06T13:56:00.000-07:00

Eight was a good number for us. 88, 86, 85, 87, even 84 made us feel pretty secure. For the past two years having Gracie's oxygen sats in the mid eighties made her heart health feel stable and consistent. Even though Gracie's upcoming Fontan surgery is always in the back of our mind, we knew that as long as her sats were hanging out in the 80s we could put off surgery.

Next Monday we head back to Children's for Gracie's six month cardiology appointment. Over the last six weeks or so we started noticing more blueness - blue fingertips and toes, blue circles under her eyes, and Gracie just seeming more tired in general. Gracie's sats have been so stable that I hadn't been checking them too often. So with our upcoming appointment, I dusted off our home pulse ox machine a couple weeks ago to start getting Gracie prepared for medical equipment at the appointment... 78, 74, 73, 72, 76, 75, 82, 83, 79 have been the numbers flashing on the screen. I wish I could say these numbers have been low because she was wiggling, kicking or crying. But Gracie has just been patiently lying on her changing table each time hugging her pink kitty and commenting "mamma takin' sats now."

These were not numbers I was ready to see yet.

Even though as a heart parent I am acutely aware that things can change at any time, I had in my mind the way I would like the timing to unfold leading up to Gracie's Fontan surgery. I had warmed up to the idea that because Gracie had always been a good satter she would continue to stay in the 80s. My plan for her was that she would sail through until next spring when she would have her pre Fontan heart cath and then the Fontan surgery shortly thereafter. With her sats up in the 80s I would worry less about her starting preschool, getting sick, and making it through winter. This was my plan. My plan.

Next week after our appointment we will have a better idea of what Gracie's lower sats mean. Is this just her new norm as we are approaching the Fontan? Does she need a heart cath sooner than later? Is there some other reason her sats are lower? Is it just a fluke that they've been low recently?

This week could you please keep our sweet girl in your thoughts and prayers? Please also keep the family of our heart friend, Charlotte, in your prayers. Charlotte had recently celebrated her first birthday and passed away very suddenly last week. Her blog can be found here: Little Miss Ritchie.

Trip to San Juan Island

2011-05-26T19:55:00.000-07:00

I've gotten behind blogging (again!), so get ready for a few catch up posts. Last month we took a great trip up to San Juan Island. We never tire of this beautiful place and our good memories here! This time around our trip to the San Juans was actually an escape from home construction as the last of the repairs to our house from the storm damage were being completed. Hooray that our dining room is finally back together and the new flooring is in!

Taking the ferry to get to San Juan Island is always half the fun.

And that windy breeze on the ferry deck just cracks G up!

We stayed at our beloved Roche Harbor Resort.

The ground were gorgeous with all the spring flowers in bloom.

View from our balcony.

Gracie loved cruising the docks and counting all the boats. She's counting up to 20 now!

A short hike from our hotel was this really cool monument in the middle of the woods.

We spent lots of time out hiking with G in the pack.

And found some of the best spots on the planet to break for snacktime :)

Beautiful beach walks.

The weather was a little bit chilly and rainy, but we discovered that toddler snow pants make pretty good rain pants too.

Hiking around Lime Kiln State park.

Good bye San Juan Island, we hope to come back soon!

Two Years Ago

2011-04-25T14:57:00.000-07:00

Two years ago we brought Gracie home after she had undergone her third open heart surgery. Gracie was eight months old then and had spent over half of her life in the hospital. I love that when we brought Gracie home back in 2009, it was spring. It was a new season, a time of rebirth, and a promise of better days to come. The warm sunlight streamed into the car window on the drive home from the hospital and as I glanced from my sleeping baby to the shimmering water under the Tacoma Narrows Bridge my heart was full of an enormous sense of hope. Even though we had a tough recovery ahead of us, Gracie was stable, and stronger, and life for us was moving forward.

Most parents with a child with a complex congenital heart condition will tell you that the first year is the most difficult. As we celebrated the two year anniversary of being out of the hospital tromping through the Skagit Valley Tulips, I am still overwhelmed with gratitude for the many people (some of whom we had never even met) who were thinking about and praying for Gracie during that time. Our family who traveled to spend time with Gracie, all of the carepages messages, our thoughtful coworkers, the cards and care packages, the neighbors who brought us meals and helped take care of our cat... all of those kind gestures helped carry us through during that time.

Thank you for keeping up with us and following Gracie's story!

Happy Easter!

2011-04-25T07:05:00.001-07:00

Gracie was much more excited about her Easter Basket this year!

How did that Easter Bunny know that this little girl is going to Disneyland in the fall and needed a Mickey Mouse book?

New towels for swimming lessons! So much more my style than the old blue bath towels from daddy's former bachelor pad :)

Wowsa! My first chocolate bunny!!

Chocolate everywhere!

New Shoes for G

2011-04-07T07:17:00.000-07:00

Gracie's new orthodicts finally arrived! Gracie's PT recommended these to give G a better base of support and help position her feet in standing/walking. The orthodicts were custom made for Gracie from a cast of her feet and ankles, and we even got to pick out the materials for the straps - pink with hearts of course!

Shopping for shoes to fit the orthodicts was a bit of an adventure. However, I will say that the woman who helped us at Stride Rite was amazing. She knew exactly which shoes had insoles that could be removed and she had good suggestions for which shoes would work best with orthodicts. G has a more sporty look these days, as tennis shoes and sport sandals seem to work best.

It took a couple days to get used to but Gracie seems to really like the orthodicts. She even asks for her "new shoes please, mama."

They definitely help her balance with standing.

And handstands too!

First Hike of the Spring

2011-03-22T20:00:00.000-07:00

After a looooooong winter of snow, rain, sleet and the crazy windstorm that literally blew our roof off... we weren't about to pass up the chance to get outside and celebrate the first signs of spring with a little hike! We are officially ready to say adios to winter and move on to a warmer season :)

Gracie was thrilled to be reunited with her hiking backpack which she hadn't seen since our late fall trip to Leavenworth (in this picture). Do you think she grew over the winter?!

A Girl and Her Horse

2011-03-18T14:09:00.000-07:00

Last fall when we started Gracie in a weekly therapeutic horseback riding program (hippotherapy), we were excited about this being one of the best forms of physical therapy. Over the the last six months we have seen many physical benefits of hippotherapy - stronger core strength, improved posture, better balance, and increased endurance. We have also watched the relationship grow between Gracie and Ebony (aka Ebby), the horse she rides every week. G and Ebby have a tight bond, and Gracie definitely knows that Ebby is "her" horse!

At the start of each session, Gracie stands on this platform and calls Ebby to come to her so she can mount and begin riding. In the beginning, Gracie was bashful and shy... and she would only mouth the words "come." Over time as she's warmed up to Ebby, now G stands at the platform with confidence, thrusts her arm out to motion Ebby towards her, and in a enthusiastic and firm voice she yells out "Come on, Ebby!" And as Ebby walks towards her Gracie is beaming, realizing that her words have meaning and that Ebby is listening to her commands and coming.

Gracie is also very good at saying "Go, Ebby" and "Stop please, Ebby." I would imagine that it must feel pretty powerful as a 28 pound, two year old to have a 1,000 pound horse listen and respond to you! Some of my favorite other things that Gracie says to Ebby are "Bless you, Ebby" when Ebby sneezing, and "No Snacking, Ebby" if Ebby tries to nibble on a piece of grass.

During Gracie's session Sarah, her instructor, comes up with lots of fun songs and games. Here Gracie is singing "If you're happy and you know it, pat your helmet!"

Blowing kisses to mommy.... awwwww!

When Gracie gets tired during the session, this is her "sleeping lady" position so that she can rest for a minute. Even though she is laying down, her vestibular system is still engaged from the movement of the horse and using different muscles to stay balanced on the horses back.

After riding we usually head back to the stables and feed carrots to some of Ebby's "friends." Sarah works on OT skills by having Gracie sort the carrots first in buckets and then break the carrots in half.

Gracie talks about Ebby all the time when we're at home, and she asks everyday if she's going to see Ebby. One of my favorite requests from G lately is that she wants to skype Ebby. This cracks me up! Hey, if you can skype your grandparents and everyone else, why not be able to skype your horse? Um, G Honey, I don't think Ebby has internet access. Let's look at some pictures of Ebby instead.

Soon to be Schoolgirl

2011-03-16T14:01:00.000-07:00

Earlier this week we had our first meeting to get Gracie signed up for preschool in the fall. Preschool?!? Wow, my thoughts exactly :) As much as I thought that we (and by we I mean ME) might not be ready for this day, Gracie continues to prove to us through her all of her activities that she is one determined and independent little lady who is ready to get out there and join the school world.

Gracie has made huge progress over the past year! We recently went through some developmental testing through her Birth to Three program and Gracie scored four months ahead in her receptive language skills and right on track in her verbal skills. Her cognitive and social skills also seem right on track so our main area of focus right now is gross motor and fine motor. Those darn sternal infections Gracie experienced after her surgeries had poor Gracie on her back in the hospital for so many months during her first year. The lack of tummy time combined with any predisposition she may have had for gross motors delays as a heart kid has made it challenging for her to catch up in that area. Then you combine that with Gracie's oxygen sats going down as we head into her next surgery, and it's been tough for her to have the energy to catch up on gross motor. We have seen a lot of improvement in her core strength and I think the swimming and horseback riding has really helped in that area. We are hopeful that Gracie may be walking by this summer, but we know that she is very much on her own schedule and we will be thrilled whenever that day may come!

The preschool that Gracie will be attending is offered through our school district and is a developmental preschool that will have a physical therapist and occupational therapist who can help Gracie in those areas. We are lucky that we have a great developmental preschool program in our district where the class sizes are small (under 10) and the teachers have their masters degrees in early education. Gracie will go to preschool three days a week, and then we will continue with her swimming, horseback riding, and private physical therapy as well. It's going to be a busy year!

As for me, I'm not sure what I'm going to do with three hours a day of free time three times a week... maybe a long awaited digital photo organization project, finishing (ooops I mean starting) Gracie's baby book, going to the gym, cooking? Hard to say, but the school assures me that if my separation anxiety gets the best of me they can find something for me to do in the classroom.

Gracie is pretty excited about her new backpack and loaded it up with several important things to take to the school meeting - her baby doll, bunny ears and touch and feel tiger book.

I'm not sure how we're going to explain that Pancho the horse isn't going to be able to go to preschool too, but we've got some time to work on that one.

Backfloating and Bubbles

2011-03-11T07:05:00.000-08:00

Gracie has been doing really great with her therapeutic swim program. We think she must have inherited the fish gene from her Uncle Scott who swims most days of the week, because G has definitely taken to the water!

One of Gracie's big accomplishments recently has been her willingness to put her head under water while backfloating. She is also getting the coordinating of kicking with her legs and propelling her arms on her back.

Gracie's gotten so comfortable with the water that she's starting to put her face in the water and blow bubbles.

Her swimming still mostly focuses on building core strength. Here Gracie is working those abs on a little kickboard.

More core strengthening work.

And wheelbarrows for an upper body workout.

Gracie loves cruising on the step in the pool and playing with all the fun toys they bring for her.

We are so proud of Gracie's progress with swimming. She has been a real trailblazer in the pool accomplishing so much at two!

Out to play

2011-03-05T19:36:00.000-08:00

No snow? No rain? It's time to get outside and play!

First Snowman

2011-02-28T07:05:00.000-08:00

Hmmm... what to do when you're snowed in?

Time to put daddy to work building a snowman!

Daddy took his snowman building responsibilities very seriously.

Could these three be any cuter?

Frosty, now that it is raining we are going to miss you!

Cleaning up after the storm

2011-02-20T13:55:00.000-08:00

A few weeks ago we had a fierce storm in our neck of the woods which resulted in a little water damage, a lot of cleanup, and a flood of new words from Gracie! We've definitely had some gusty winds up here but nothing quite like what we'll remember as the January Storm of 2011! That night the wind was so strong that our windows rattled, the floor was shaking, and Paul and I were joking about there being white caps in the toilet because the force of the wind was causing the water in the toilets to slosh around. As we lay in bed that night trying to sleep we could hear the wind howling as it slapped the sides of our house and then pelting rain and sleet kicked in.

Unfortunately the next day we discovered that the storm had left some damage. As I walked into our dining room the next morning I noticed something was wrong. I looked up to see that our dining room ceiling had split open in one area and it was bubbled and leaking water in another area, and water was all over the floor. Uh oh.... this is not looking good. As I walked into our family room trying to figure what to do and who to call, I stepped in something wet and looked up to see that the ceiling around our skylight was bubbled and leaking in water. Yikes, what happened to our house?!

Our insurance company promptly sent out a water mitigation company. The assessment was that the force of the wind had lifted the shingles on the roof in several areas causing water to leak into our house. Turns out we had hurricane level winds that night!! Three of the walls in our dining room and the ceiling were completely soaked with water as well as the ceiling around the skylight in the family room.

So the clean up process began. They tarped the roof over the dining room and the section over our family room where the shingles had lifted. Inside the house they created another windstorm by bringing in eight huge commercial fans and two dehumidifiers to start drying things out. Outside it was still windy for several days and the tarp blew off the house three times even though it was well secured with nails!

After a week of trying to dry things out the walls were still wet, so they started ripping out sections of the walls and ceiling and using a spiked roller for perforation to help with the drying process.

On day 7 of the dryout process, the dehumidifier broke leaking water all over our hardwood floors over night causing them to warp and buckle :( Thus beginning another seven more days of trying to dry out the floors.

We are finished with the dry out process and the new roof is done. We now have two weeks worth of construction inside to put our walls and ceiling back together and another week after that for our hardwood floors in the dining room to be ripped out and for all of the floors downstairs connecting to the dining room to be sanded and stained to match. Whew, I am going to be most happy when this little unplanned remodel is finished!! Thank goodness for homeowners insurance!

So now for the silver lining of this story! Over the last month Gracie has had an explosion of talking. All of the sights and sounds of the construction has been quite an inspiration to her and she has started speaking in three, four, five word sentences and then some! The funny thing is last fall her music class had a segment that focused on home improvement projects. There was a song with words like this (my apologies to Kindermusik for probably bungling the lyrics a little):

The carpenter's hammer goes rap rap rap
and his saw goes seeeeee saaaaaaw
he hammer and raps
and builds a house for me

Gracie became very interested in her hammer while listening to all of the hammering going on, and believe me there was plenty with the roofers tarping the roof three times and then putting the new roof on. At first Gracie just started saying "Hammer rap rap, Hammer rap rap." Then she said "Build house for me!" And I realized that she was singing that song from class! I had never heard her use a sentence or put that many words together spontaneously. And now she sings the whole song by herself. It has really been amazing to hear the sentences start flowing and find out what is really on this little cutie's mind! The aftermath of the storm of 2011 has been pretty inconvenient, but I can't help but laugh when I think about our little two year old construction worker proudly belting out that tune all by herself.

Valentine's Day and CHD Awareness Week

2011-02-14T12:24:00.000-08:00

February 7 - 14th marks Congenital Heart Defect Awareness Week. Valentine's Day holds a special meaning to us as we think about and remember those with special hearts.

Three years ago I had just completed my first trimester and we were a happy and typical expecting couple stocking up on baby books, picking out nursery furniture and wondering if the paint colors for the nursery would be pink or blue.

Three years ago we had never heard of congenital heart defects and had no idea that our baby would be born with a serious heart condition that would require open heart surgery shortly after birth to survive.

Three years ago we had no idea that our baby could be born with a heart defect even if we had no family history of heart conditions and did everything "right" by leading a healthy lifestyle taking prenatal vitamins.

Below are some CHD facts and statistics taken from the Children's Heart Foundation website (www.childrensheartfoundation.org):

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

Congenital heart defects are the #1 cause of birth defect related deaths.

Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.

There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.

In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.

Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

Three years ago we had never heard any of these statistics, and didn't know that our daughter would be one of the "1 in every 100" babies to be born with a heart condition.

Three years ago we had no idea the devastating prenatal diagnosis that we received at 20 weeks was an incredible blessing and enabled the doctor's to create a surgery plan after birth which increased our baby's chance of survival.

Three years ago we couldn't have comprehended what an incredible fighter our daughter would be to endure three open heart surgeries and four months in the hospital all before her first birthday.

Three years ago we had no idea that our beautiful daughter would have blond curls and that each and every morning the first thing she would say to us after waking up is "I love you."

Three years ago we couldn't have imagined how the love we feel for this precious little girl could be so strong and bring us even closer as a family.

On this Valentine's Day, if you have been touched by Gracie's heart and would like to support funding for congenital defect heart research we ask that you consider contributing to the Children's Heart Foundation http://www.childrensheartfoundation.org/donate-now .

Go Hawks!

2011-01-08T19:19:00.001-08:00

Who would have thought those Seahawks would have made it to the playoffs and then some?!

We have one very dedicated little cheerleader who loves shouting out her new football vocabulary: "Go Hawks!" "Touchdown!" "Sack!" "Run, run, run!"

This little girl can't help but love game day with her daddy!

Gracie's Baptism 12/26/10

2011-01-01T22:57:00.000-08:00

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all - "Real Love"

("Special Child," poem by Sharon Harris)

Merry Christmas!

2010-12-24T10:23:00.000-08:00

On this Christmas Eve, we wish you a joyous Christmas filled with many blessings!

Much love,
The Heaths

8 inches of snow!!!

2010-11-23T16:23:00.000-08:00

Gracie's first time playing out in the snow! Don't let the smile fool you... Gigi was a little unsure of all of this white stuff until she realized how much fun it was to throw! When the weather forecast said 2-3 inches of snow yesterday, we weren't exactly expecting a blizzard. Poor Paul had over a five hour commute home due to the crazy weather and ended up having to walk part of the way because the bus couldn't get up to where we live. The snow is gorgeous though! We may have to pull out the Christmas tree tonight, because I feel pretty silly with our pumpkins out with all of this snow.

A beautiful fall day and upcoming trip to the sleep clinic

2010-11-15T09:00:00.000-08:00

A few days ago we had the most beautiful day to enjoy the fall leaves. Around here, when you get a nice day in the fall you've got to whip out that tripod fast for some family photos because you never know when the next crazy wind storm is coming that will knock all the leaves off! And sure enough the day after we took these photos that wind was shaking the house and rattling the windows. Sigh, there is no turning back now - winter is here.

Taking daddy for a walk around the yard.

Ahoy, matie!

Peek a boo!

What a cutie.

Hmmmm.... is this the face of the sweet little girl who has been depriving her parents (and self) of sleep for the past ?? months? If you answered yes, you are correct. Sleeping has never been Gracie's forte, and it's pretty normal for her to be up two, three, four times a night. We've read all the books, tried all the tricks with no luck. So off we go to the sleep clinic this week just to make sure there isn't a medical cause for her to be waking up so much (i.e. sleep apnea). Here's to hoping that winter kicks in Gracie's hibernation instinct and gets her sleeping through the night!

Water Therapy

2010-11-11T13:51:00.000-08:00

Our busy fall continues! We recently added weekly swimming therapy into Gracie's activities. Before we moved Gracie's physical therapist would meet us at the YMCA pool for water therapy when Gracie was about a year old. Back then, Gracie worked on tummy time exercises focusing on laying on her belly in the water and lifting her head up, kicking, and of course splashing. It took me awhile to find a new water therapy program after we moved, but I am glad that I did. Where Gracie swims now is a warm water therapy pool, so both the water and the air inside the pool is nice and toasty warm.

Gracie does exercises on this surfboard where her instructor glides the board across the water and gently raises it on either side. With the movement of the surfboard, Gracie engages her shoulder and core muscles to stabilize herself and gets a good workout. She also thinks it's pretty funny and it's like a game to her.

They also work on swimming on her back. Aren't those little flippers adorable?! The idea behind floating on her back is that it is relaxing and a good sensory experience. With Gracie's heart surgeries there is a lot of tightness in her chest, so as she extends her arms on her back it helps to loosen up her chest muscles.

There is a ramp and steps at the pool, so Gracie works on walking in the pool. Gracie's water therapist, Karen, is terrific and the two of them chat up a storm in the pool.

We really are amazed at how much Gracie enjoys both the swimming and horseback riding and how well she has adapted in these new environments. She is becoming quite a confident, determined, and spirited young lady. It's so much fun to hear her instructors talk about how agreeable, easy going and hardworking she is. Gracie's core strength is getting much stronger and we are so happy that these are activities that she loves.

Trip to San Juan Island

2010-11-03T13:46:00.000-07:00

A few weeks ago we took Gracie up to San Juan Island to celebrate our fourth wedding anniversary. Shortly after Paul and I started dating we went up to San Juan Island on a three day kayak and camping adventure. Back then when I wasn't working or spending time with handsome new boyfriend, my mind was preoccupied with getting out on the water in my kayak to sniff the salty air and search for harbor seals and starfish. So early into our relationship I realized that this Paul guy might be "the one" and that it was time to get him out on the water asap :)

Here we are back in 2004 enjoying a beautiful moonlit evening at our campsite on the water.

And here we are at Cattle Point Beach in 2004. I think I knew then what I know now, which is that I found the right guy to paddle through some rough waters with!

So this year when we talked about taking a trip for our anniversary we couldn't think of any place more perfect to show our beautiful little girl than San Juan Island. There's something magical and timeless about being up in the San Juans. Gracie was beyond excited about the ferry ride up to the island, she kept shouting "boat, boat, boat" and "water!"

As we walked around the ferry she laughed and kept giggling and talking about how "windy" and "sunny" it was. She is talking so much these days!

No kayaking on this trip but we did indulge one of Gracie's passions, which is hiking. Gracie gets the biggest kick out of riding around in her hiking back pack. She literally wears herself out with excitement and provides a nonstop narration of every tree that she sees and bird that she hears.

The grounds of the hotel where we stayed (Roche Harbor Resort) were amazing and provided plenty of walking trails to explore...

Docks to enjoy...

Boats to see...

Saltwater to sniff...

And quiet moments to savor.

Cattle Point Beach was as beautiful as we remembered...

maybe even more beautiful this time!

What an amazing trip and four years this has been!

Howdy Pardner

2010-10-30T07:47:00.000-07:00

Cowgirl Gracie and her trusty sidekick Pancho
wish you a very Happy Halloween!

Therapeutic Horseback Riding

2010-10-24T14:50:00.000-07:00

This little lady has a new found love, and he is a gentle black horse named Ebony or "Ebby" as Gracie would say. I think we may have a serious future cowgirl on our hands! Gracie recently started a weekly therapeutic horseback program as a form of physical therapy to help build up her core muscles. At first I was pretty apprehensive at the thought of putting my two year old on a horse, but Gracie's grins and excitement at being around horses convinced me otherwise.

So, therapeutic horseback riding is called Hippotherapy and uses the horse's soothing rhythm, strength, warmth, and three-dimensional movement pattern to provide healthy exercise while improving circulation and muscle tone. Other benefits include: relaxing tight muscles, increasing balance, building muscle strength, sharpening hand/eye coordination, improving social skills, and self-confidence. Horseback riding is such an amazing workout as with each step that the horse takes, Gracie has to engage her muscles to offset the horse's movement. I originally thought that she would be on a pony or a small horse, however she is on a full sized horse because a larger horse has more fluid motion and longer strides. A pony would have shorter, choppier steps and would actually be too difficult of a workout for Gracie.

On Gracie's first day of class it was so emotional handing her off to her therapist. Other than for medical procedures, I've never had to "hand Gracie off" for anything. I could feel the tears welling up as she left my arms and got on the horse and literally rode off without me. Tears of pride and tears from the realization that she is growing up. Gracie did amazing for being in such a new and different environment. She was a little nervous and stiff at first, but has quickly warmed up and she can't wait to get on Ebony now.

It helps that Gracie absolutely loves her therapist, Sarah. There is usually one or two assistants helping on either side of the horse and one person directing the horse from behind. Gracie smiles and waves to each of them throughout the session.

Sometimes there's a wave for momma too!

Gracie is one of the youngest riders and her therapist is thrilled with how well she is doing. Gracie has even mastered the verbal cues and loves to tell Ebony to "Go, go, go!" I have lots of photos of Gracie and Ebony on my phone and all week long Gracie asks over and over to "show me Ebby!" At the end of her lessons, Gracie always give Ebby a big hug goodbye and a sweet little pat.

More posts to come. I've been on a blogging hiatus but now that G's sleep schedule has gotten a little more under control, I'm back or at least trying anyways :)

Two!!

2010-08-15T09:30:00.000-07:00

It is hard to believe how fast this past year has flown by and that we just celebrated our "baby's" second birthday! Gracie continues to amaze us every day with her determination, effervescence, and cheery personality. For a little person who has been through so much, she continues to remind us to live each day to the fullest.

Let the birthday celebrating begin! Daises and polka dots were the party girl's theme with beautiful flower arrangements made by Granny.

Here is our party girl all decked out in her daisy dress ready to greet her party guests.

Family photos in our backyard.

A little snuggle with Mama, the other birthday girl of the day. Yes, two years ago I thought that I would be going out to dinner that night for my birthday and instead we took a little detour to the hospital for the most memorable birthday present ever with the arrival of Gracie!

Cake! Yum!

Gracie and the girls.

I'm still trying to figure out how to post videos, but here is a sideways look at Gracie eating her birthday cake!

Cardiology Update

2010-06-24T13:42:00.000-07:00

I am woefully behind in blogposts and I can't believe it's been weeks since I've updated! I have much to update on our travels, visitors and what Gracie has been up to, but for now I'll get started with the news from Gracie's six month cardiology visit. Gracie had been pretty much inconsolable during her last few doctor visits so we went the sedation route for her echo and EKG - which ended up being a huge relief! Gracie fell into a deep snoring slumber about five minutes after taking the sedation medicine and they had a full hour to monitor her sats and run tests. The great news is that Gracie's sats are in the mid to high 80s and there were no changes in her echo. The better news is that if she continues to stay stable we may not be looking at the Fontan surgery for a couple of years. We had originally thought that next summer Gracie would have the Fontan when she turned three and got to 30lbs. However, Gracie's cardiologist thinks we can put the Fontan off once she gets to 30 lbs if she is still doing well. With Gracie's history of surgery complications and long recovery times we aren't anxious to head back to surgery any time soon. Gracie has been making such good progress with her physical therapy and we would love to give her a couple years to keep catching up before another surgery. So, time will tell when we will be back for surgery, but for now we are thankful and content to wait as long as we can. Gracie's next cardiology appointment will be in six months.

Summer has finally arrived in the Pacific NW!!

2010-06-24T13:09:00.000-07:00

Tulips

2010-04-26T17:46:00.000-07:00

This past week we took a drive up to Skagit Valley to enjoy the Tulips! I have always been a huge spring flower fan. Last year when Gracie went in for her Glenn in March, I remember desperately wanting to be home in time to see my tulips bloom. I had visions of walking with Gracie through the yard counting the tulips, showing her the different colors, and enjoying the fresh spring air. Even though the days at the hospital turned into weeks, we made it and those tulips could not have been more beautiful! ( here's last year's post http://jenpaulgrace.blogspot.com/2009/05/tulips.html)

So this year I'm missing our tulips from our old house, but can't wait until fall when Gracie can help plant a batch of bulbs for our new yard.

Happy St. Patty's Day

2010-03-17T17:26:00.000-07:00

And in honor of today's festivities, Gracie completed her very first art project at playgroup. Baby Van Gogh? I think so!

19 months old

2010-03-09T17:04:00.000-08:00

What an exciting month this has been! Little Miss Gracie has had an explosion of great developmental stuff going on lately and it seems like every couple of days something new is happening. Gracie's physical therapist is thrilled with how she doing and says that she is a different baby than when she first met her in January.

First up, the big excitement is that Gracie has been officially sitting up completely unassisted for the past few weeks!! Our elaborate collection of Boppys and support pillows for Gracie have finally been stashed away in the closet for good. I realize that there have been photos on the blog in which Gracie appears to be sitting up solo, but believe me those were cleverly orchestrated with a hand nearby in case of a wipe out. This photo is the real deal, no more trick photography needed!!

Perhaps the most exciting part of Gracie sitting up unassisted is that she seems so proud of herself. Gracie gets this adorable little grin when you ask her to sit up as if to say, "Hey I can do that!"

Gracie has also become a real champ at sitting in high chairs in restaurants and we have been loving being able to take her out to dinner. Because those chairs have little support, it used to be too challenging for her to sit up for periods of time. But now Gracie loves sitting in her own Big Girl chair instead of in our laps.

Another big milestone for the month is that Gracie has started army crawling! This is definitely not Gracie's preferred mode of transportation, but it is great to see her trying.

And hello signing!!! I've been working on sign language with Gracie for what seems like months and all of the sudden Gracie started signing "up," along with "all done," and "more." She also love to clap to If you're happy and you know it.

So, it's one step at a time for us. Our little sweetheart has not had an easy road and each of these little milestones are so meaningful because we know how hard Gracie has worked to get where she is.

Happy Heart Day

2010-02-14T17:20:00.000-08:00

Happy Valentine's Day! Members of the Gracie Fan Club mailing list received a special Valentine this year promoting CHD Awareness. This is the first year we took the opportunity to acknowledge CHD Awareness Week as this time last year we were in midst of Gracie's forth cath procedure and preparing for her third open heart surgery, and the year prior at 10 weeks pregnant I was still oblivious to the CHD world! If you are not already on Gracie's mailing list and would like to be added, please feel free to email me your address. I am really excited about our next mailing in April when we celebrate Gracie's 1 year anniversary of coming home after eight rocky months of being in and out of the hospital.

So, here are some CHD facts taken from www.itsmyheart.org

Congenital Heart Defects are the #1 birth defect. Source: March of Dimes

Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes

This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation

The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes

It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes

18 months old!

2010-02-01T20:55:00.000-08:00

Happy 18 Month Birthday, Gracie! Here's a look at what you've been up to lately...

You love to stick out your tongue and act silly! Your laughter and squeals fill the house and you are such a happy little girl.

You are a High Five addict and love to give anyone and everyone a High Five... the Comcast guy who came to the house to hook up the phone, the cashier at the grocery store, the woman at the hospital who printed off your medical records for us (that was a thick file!), other babies at Target, and you even try to High Five the cat.

You are pretty excited about your very own swing in our new backyard (and I'm pretty excited that you have your own swing that we don't have to sanitize with purell!).

You love having playdates with your cousins and it's so cute to see how they hug and kiss you when you're together.

No matter how many toys we buy for you, this remote continues to fascinate you and provides the perfect distraction while I'm working on your hairdo for the day.

Sometimes it looks like you may be planning a little escape...

You've been working on your separation anxiety and finally decided it's okay for Uncle Scott to hold you, as long as you have your binki and mom nearby.

You LOVE your red ball and we can't wait to see you chasing after it this summer!

You are a big fan of ice cream, and Skinny Cow ice cream sandwiches are your favorite.

You enable us to view many gorgeous sunrises as sleeping in is not part of your plans right now!!!

You are a precious and perfect little person and we love you so much!

We are still busy getting settled in the new house and finding our way around. I'm pretty excited about some of the resources that we've found for Gracie and it's nice to be so much closer to Seattle. A couple of weeks ago we met Gracie's new pediatrician, and she was terrific! She has worked with a number of other heart kids and is familiar with heart related issues and the cardiology team at Children's. On top of that, she also has a daughter with special medical needs and has personally worked with our new Birth to Three program. I was really nervous about starting over with a new pediatrician, but this proved that change can be a good thing!

We stay pretty involved with physical therapy, occupational therapy and now speech therapy for Gracie - and it is amazing how far she has come since we came home from the hospital last April. Gracie is now sitting unassisted (with pillows nearby for the occasional wipe out) and is starting to pull herself to a stand. She does great walking with support under her arms and takes these huge aggressive steps that make us think that she will run before she walks! Still no crawling, but she is such a master of rolling that it seems like she's determined that's the fastest way to get places.

As far as OT, we are focusing on feeding issues. Gracie has a really tough time with textures and gags (or spits up) if she eats solids. She does great with purees and cereals, and has been gaining good weight which is what matters most. But it looks like she will be on her higher concentration formula for awhile.

Something new for us is starting speech therapy. In addition to having a speech therapist visit weekly, the Birth to Three program that we're now involved with offers a six week Hanen class called "It Takes Two to Talk" which I just started last week. I'm really excited about the class and her teacher thinks Gracie is at a perfect stage to really benefit from the training.

We had a really great appointment with Gracie's ophthalmologist last week and Gracie got a clean bill of eye health! This was a huge relief to us as there had been some concerns that Gracie's optic nerve may have been damaged during one of her earlier surgeries. Gracie was slow to start tracking and she had some irregular eye movements, however over time those things have has greatly improved. They dilated her eyes (no small task) and could see that her retina and optic nerve are normal and healthy! They did notice by the shape of her eyes that she is very nearsighted (gets that from me!), so we will be shopping for some pink glasses when Gracie is around 2 1/2.

Other than that, we have been enjoying lots of walks in our new neighborhood and the beautiful views of the mountains. That is, when the wind isn't blowing us over. Whoever named Chicago the Windy City had never spent a winter in Snoqualmie! Sometimes the wind hitting our house sounds like a freight train if you can believe that!

Hope this update finds everyone well and we will try to be better about updating!

Happy New Year!

2010-01-08T08:34:00.000-08:00

A LONG overdue update from the Heaths!! Yes, we arrived to our new home in Snoqualmie and finally found the box with the computer! :) December was far too short with the moving madness! Although we are no strangers to experiencing major life events during the holidays... Flash back to Christmas Eve 2005 when Paul proposed while we were in Ohio visiting my family for the holidays.

Then there was Christmas Day 2007 when we announced that Baby Heath would be arriving in the summer!

Last year we enjoyed a blissfully quiet Christmas, our first holiday at home with Gracie after the long hospital stays.

And here we were in 2009, moving the week of Christmas...

Thankfully, the move did not dampen Gracie's Christmas spirit!

Well, maybe mama did request that Gracie wear the Santa hat one too many times.

It felt a little like indoor camping for a few days as we waited for our furniture and belongings to arrive. But with help from Granny and Papa during their visit, our new house was decorated with the Christmas tree up.

One of the best things about the move is that we are now only 20 minutes from Gracie's three cousins.

This is one little girl who loves being with her family and cannot take her eyes off her fan club!

Hope 2010 brings you much joy and many new adventures!

Moving!

2009-11-24T21:43:00.000-08:00

Yes, it is true... we really are leaving Gig Harbor. Paul recently accepted a new job in Seattle and his commute will soon go from 20 minutes to 2 hours - each way! As much as we will miss the water and this beautiful community, we are looking forward to starting a new chapter for our family and getting settled in our new home.

Gig Harbor will always hold a special place in our hearts as where Paul and I met, got married, built a life together, and brought home our adorable little girl.

And some day we'll tell Gracie how she loved the salty air and watching the sailboats on our walks around the harbor.

Some members of the family are more excited about boxes and packing than others!

In other news... Gracie had her six month post Glenn cardiology appointment last week. Gracie received a clean bill of health and her cardiologist thinks she is doing great. Her sats are running in the mid 80s and she is in the 15 to 20th percentile for both weight and height. Our next appointment will be in six months! Even though by our accounts we think that Gracie has made huge progress since the Glenn, it's always tremendous relief to have it confirmed by her cardiologist. Can you believe that this was our little peanut six months ago...

And here she is now... getting ready to celebrate her first Thanksgiving at home!

Halloween, the Birthday Boys and Flu Shots

2009-11-01T10:55:00.000-08:00

It was as busy week. We got together for a pre Halloween and birthday celebration with the cousins and Auntie Chris, Uncle Scott and of course Roxy. I love this picture of Gracie and Ava. They are always so cute checking each other out.

The lion pack and the bumblebee!

Our brave little lion.

The birthday boys... Uncle Scott, Paul and Dexter too.

Gracie and Daddy opening birthday gifts and a special surprise. Gracie's favorite thing to say these days is "Hi Dada."

Making great progress with physical therapy. Sitting up nice and tall!

And, finally vaccination success... the whole family is H1N1 & seasonal flu vaccinated! The flowers were a special treat from daddy after a frustrating week of long lines, many phone calls, asking to speak to the supervisor, a little pleading and finagling, and finally getting the actual shots. Sheesh, there were droves of people in Pierce County on the warpath to get the H1N1 vaccine last week, glad we got that taken care of.

Pumpkins!

2009-10-25T21:16:00.000-07:00

The leopard and the panther

2009-10-19T22:32:00.000-07:00

Mommy experiment...

What do you get when you put this raring to go, little cutie...

With this irresistible hairy guy in a confined space?

...One awesome physical therapy session!

She's air born!

Gracie's physical therapist has awarded Dexter the title of the Therapeutic Cat for the progress he has been making with getting Gracie to crawl.

So close...

Yet so far away... I think at this point Dexter is saying "Therapy session over, get me out of here..."

Awww, buddy, let's be friends...

Gracie goes to Leavenworth

2009-10-15T09:28:00.000-07:00

We recently returned from our first family trip to Leavenworth, WA. Given my midwest roots, this time of year I start to crave some fall foliage, crisp autumn days, apple cider and pumpkins. What better to celebrate fall than a trip across Stevens Pass to enjoy the beautiful colors.

And here is Fraulein Gracie, our Bavarian Princess, getting in touch with her German heritage.

Practicing Gracie's "So Bigs" in the Biergarten waiting for a yummy pretzel.

The leaves, the mountains, the perfect weather...

And this adorable little girl... smiling wide, growing up so fast and standing up strong and tall.

Our Anniversary

2009-09-22T08:42:00.000-07:00

With our wedding anniversary coming up this week, over the weekend we took Gracie on a site seeing tour of the venues of the Big Day. First stop, Chapel on Echo Bay on Fox Island. Here is our commemorative brick outside the Chapel which was recently completed.

Little did I know that the pitter patter of these sweet feet would be gracing the steps of that same sidewalk three years later.

Here we were in the Towncar ahead crossing the Narrows Bridge going over to Union Station on our wedding day. Yes, we really were adventurous enough to have our wedding in Gig Harbor and reception in Tacoma during the thick of construction of the new bridge.

Wedding photos courtesy of http://www.wallflowerphoto.com

Roomie Reunion

2009-09-21T08:29:00.000-07:00

Last week we met up with one of Gracie's former ICU roomies for a walk on a beautiful sunny day at Owen Beach in Pt Defiance. Gracie and Gavin roomed together after Gracie's Glenn surgery and Gavin had a Coartation of the Aorta repair. After leaving the ICU, Gracie and Gavin were next door neighbors on the Giraffe Surgical Unit recovery floor. Look at these two cuties now six months post heart surgery!

Here we are with Gavin, his adorable sister Elizabeth, and mom Heather.

During our long stays at the hospital we met some truly remarkable families. Each family with a unique story and a little one with a special heart. Families who we might not have ever met otherwise and whose kindness and friendship made our time at the hospital a little easier.

Turning the corner on Tummy Time

2009-09-12T15:52:00.000-07:00

Yes, it appears that Gracie has ended her long stand off with tummy time and is enjoying the prospects that being on her belly brings. Yeah!!! Could crawling be right around the corner?! Let the home babyproofing begin! After many months of trying every trick imaginable to coax Gracie to spend time on her belly, she is self initiating being on her tummy and determined to get on the move.

I've got places to go. Look out world!

Wow, this berber carpet is really fascinating. I can't believe I never noticed it before.

You know you're having a good time when you spit your binki out because you're smiling so much!

Teeth, teeth and more teeth!

2009-09-10T15:20:00.000-07:00

Where, oh where, have Gracie's smiles gone?! The last couple of weeks our happy go lucky, photo posing diva, grinning for miles Gracie has developed a serious case of grumpiness as a huge new batch of teeth is coming in. Gracie's smiles have temporarily been replaced by puzzled looks of "what is going on here?" We had been keeping an eye on an upper tooth coming and then noticed that she is on the brink of cutting FIVE new teeth which will bring her to a grand total of seven!

Would somebody please pass the baby Oragel??

Maybe my binki will help.

Sigh... I guess this teething can't last forever.

Finally! Sunshine and salty smelling air on the ferry brought the perfect opportunity to show off those pearly whites.

Last week's excitement

2009-08-17T09:53:00.000-07:00

Exciting adventure of the week #1. Check out who is riding around like a big girl in her jogging stroller for the first time! Just in time to still enjoy the sights of summer. Gracie's physical therapist had wanted us to hold off on Gracie facing forward in her stroller until her neck muscles strengthened so we had been using an infant seat adapter for our walks in the jogging stroller. As you can tell, Gracie is ecstatic about her new view and was more than ready for the change.

Exciting adventure of the week #2. The word excitement in our house has also been known to equate with medical adventures which we had a little dose of last week. Gracie went in for a CT scan due to some concerns that she may have been experiencing some swelling in her head (hydrocephalus) potentially from her last heart surgery. Since Gracie's Glenn, she has been doing really well with height & weight growth (up from barely in the 5th percentile to now the 25th percentile), but her head has been growing at a faster rate - now in the 75th percentile. That combined with Gracie being more tired than usual and some vomiting (without fever or other symptoms) equaled CT scan to make sure that there wasn't anything else going on. The great news is that the CT scan was normal and their best guess at what is going on is that Gracie is catching up with her natural growth curve. At 6'3 and 5'9, Paul and I are not small people and we both have head sizes over the 75th percentile. With Gracie's surgeries and weeks of fighting infection, they think that she is just starting to catch up to where she would have been.

Exciting adventure of the week #3. Seattle Heart Support Group Pool Party. After a 3 hour commute which should have taken only an hour to the pool party in Bellevue in stand still traffic on 405 (uggghhhhhhh) and two diaper situations, we made it! It was really great to catch up with some of our heart friends.

Elmo's number one fan

2009-08-13T15:59:00.000-07:00

The Birthday Girl

2009-08-05T15:00:00.000-07:00

The birthday cake has been eaten, the single yellow candle blown out. The party photos have been taken and all of the presents unwrapped. After much celebrating and festivities, our party girl settled in for a well earned birthday nap.

One year ago our precious Gracie entered the world at 11:13pm weighing in at 7lbs 2oz. Gracie was adorable right from the start, all pink and chubby with a rigorous cry and she scored a 9 on the Apgar scale. We spent a couple of tender moments holding Gracie before she left for the NICU, and I remember thinking what an amazing and perfect little person she was. A few short days after she was born, Gracie had her first heart surgery. Her tiny hand gripped my finger as she left for surgery, telling me she was strong and that she was a fighter. As the agonizing hours passed during her surgery, we eased our own heartache by talking about our dream for Gracie at one year old - that she would be happy little girl and be at home with us.

Our dream for Gracie came true! We have so much to be thankful for as we reflect over the past year.

We began planning Gracie's Birthday several months ago and decided to take a vacation with family to Vashon Island to a waterfront home. Gotta love VRBO.com.

It was a beautiful setting for some much needed relaxation!

Paul and I even got to take out our kayaks! The best birthday present imaginable for me! Well, second best. How do you top having the cutest baby on the planet come into your life on your own birthday?

Gracie loved checking out the beach in her Baby Bjorn.

Do Cousins Ava and Sasha look like they are ready for a birthday beach party, or what?!

Here is Uncle Scott, cousin Rachel and the third birthday girl of the weekend, Auntie Chris.

The rest of the beach party crew, Granny and Papa enjoying the sunshine and view with Gracie.

Some other favorite birthday pictures. Gracie trying to swipe a bite of daddy's birthday cake.

Gracie enjoyed many fabulous birthday gifts including this near life sized pop up book from Paul's parents.

Wow, a talking Elmo birthday card. Gracie was stoked!

Before and after cake shots...

Notice the leaning cake before it toppled under the weight of the enormous bow!

Sunset on the beach.

Four days was too short, packing up was hard to do!

Only 360 more days until Birthday Beach Party 2010!

Gracie, the early days

2009-07-22T17:00:00.000-07:00

As we are quickly approaching Gracie's Birthday, I find myself thinking back more and more to early days when Gracie was still in utero. Ahhh, the Carr's whole wheat crackers and the Izzy fruit sodas I existed on the first three months, and the economy sized bottle of Tums I toted everywhere. The naps, the potty breaks, the food aversions, the husband's sympathy food cravings. Gracie's kicks, wiggles, and hiccups keeping me company throughout the day... and night!

A brief photo history of Gracie prior to her debut:

The Big Announcement! December 25, 2007 at Uncle Scott and Aunt Chris' house followed by practicing baby holding skills on niece Ava.

Vacation to Palm Desert February 2008, Momma is showing the first signs of a baby bump.

Naptime with Dexter.

17 weeks, what proud parents to be.

The last paddle in April 2008. The clock was ticking as to how much longer I could still squeeze into my drysuit, skirt and PFD. Could this be when Gracie developed her love of water?

Babymoon trip to San Francisco in May 2008.

All dressed up for Daddy's awards dinner for work in downtown San Francisco.

Trip to Ohio in May 2008 to visit Granny and Papa, and of course Tucker.

Getting closer... 27 1/2 weeks.

Beautiful Portland rose gardens in June 2008.

One of the last prego photos... checking out the grounds of the Chapel on Echo Bay, where momma and daddy got married September 23, 2006.

Project Supervisor

2009-07-19T16:17:00.000-07:00

Gracie overseeing the weekend yard work projects from the comfort of her new pink Adirondack chair. Keep shoveling that mulch, daddy!

Little Hiker Girl

2009-07-12T16:06:00.001-07:00

The Saturday morning Point Defiance walk is becoming a well loved family tradition....

Wednesday smiles...

2009-07-08T11:14:00.000-07:00

11 Months Old Today

2009-07-01T11:52:00.000-07:00

Guess who is 11 months old today? Who is this little person that looks more and more like a toddler and less like a baby?

At 11 months:

-Gracie is capable of creating tsunami sized tidal waves from her baby bathtub fully soaking mama and dada, and she loves it.

-Gracie now sleeps in her big girl crib in her very own room. This one took me a while to get used to and I still miss being able to peek over at her in the middle of the night.

-Gracie is doing monumentally better with tummy time and will tolerate long periods of time on her belly. Although now that she is a master of rolling over, keeping her on her tummy is a challenge.

-Gracie LOVES Elmo. We discovered the depth of Gracie's infatuation with Elmo reading her a Sesame Street color book which had Elmo and the color red first, then on the next page Cookie Monster and the color blue. Gracie protests whenever we turn the page to Cookie Monster and she grabs the book and turns the page back to Elmo.

-Gracie is making lots of sounds: ahhhh, haaa, boooo, pooo and the infamous Gracie growls. We had a few marathon sessions to get Gracie to say dada for Father's Day, but Gracie decided that she will let us know when she is ready for that.

-At Gracie's last Cardiology she weighed 18.6 lbs and was 27 inches, which is in the 25th percentile for both. Gracie is perfectly height/weight proportioned according to her cardiologist.

-Gracie is working hard on sitting up. She can prop herself up with her arms and look around.

- Gracie likes to assist with holding her own bottle and feeding herself with a spoon.

-Gracie has two bottom front teeth, but all of the chomping on toys and drooling makes us suspicious that more are on the way.

-Gracie is still sorting out her feelings for Dexter the cat, and vice versa.

-Gracie has had many nicknames. The ones that have stuck are: Gigi, peanut, and sweetie.

-Gracie loves music and hearing us sing to her, no matter how desperately out of tune we are. Her favorite requests are Itsy Bitsy Spider, ABCs, and Old McDonald had a farm.

-Gracie is on 22 calorie Enfamil Gentlease and has expanded her purees to include green beans, peas and carrots.

-Gracie's current medications are captopril 3 times a day and 1/2 tablet of aspirin daily.

Roooooad Trip!

2009-06-29T14:07:00.000-07:00

Yeah... more firsts! Gracie took her very first, non hospital related road trip this past weekend down to Portland to visit Grandmother (GM) and Grandfather (GF). The four of us packed up and hit the road for the 2 1/2 hour trip.

Yes, four, as Dexter our diabetic cat still needs his insulin shots twice a day. We think Dexter must have been a trucker cat in one of his past cat lives because he is more relaxed on the road and in hotels than he is at home.

Gracie loved catching up with GM and GF. Here she is enjoying one of her all time favorites, the Tickle Monsters with tickle monster finger puppets.

Nose to nose with GF.

And the trip would not have been complete without introducing GM and GF to Gracie's new best friend, Elmo.

Another first... First ride on a swing! Gracie loved it.

Have you ever felt the rain?

2009-06-24T11:49:00.000-07:00

A funny things happened on our walk today as Gracie and I strolled around Gig Harbor. I packed up Gracie in her Baby Bjorn instead of using her stroller to give her neck muscles a little workout. We get half way around the Harbor when the dark clouds that didn't originally seem very ominous begin to gently sputter big drops of rain. As I start to think "akkkkk, we are going to get soaked," Gracie raises her arms and looks up to the sky inquisitively with her nose scrunched up and starts laughing and laughing. And I realize, wow, this is the first time my little girl has ever felt the rain. Being on house arrest from outside germs for so long and spending months in the hospital entering and exiting from a covered parking garage does not exactly give you much time to explore the elements! I love these little moments when I get to see Gracie experience something for the first time. May the raindrops always bring you smiles, sweetie. After all we do live in Seattle :)

Happy Father's Day

2009-06-22T08:40:00.000-07:00

Well, that cake says it all... this little girl LOVES her daddy! Lights up when he comes in the door home from work, can't stop laughing when he flies her up into the air, and is mesmerized by his dramatic readings of her favorite Elmo book. We are two very lucky ladies to have this handsome guy around.

Gigi and Daddy enjoying a Sunday stroll around Point Defiance gardens.

A couple of shots of Daddy's number one fan club members.

Thank you, Maddie!

2009-06-20T13:37:00.001-07:00

One awesome baby backpack + one tall daddy = one very excited Gracie!

A big thank you to Gracie's buddy, Maddie, in Vancouver for generously sharing her baby backpack. Gracie is now exploring the world at all new heights, and is taller than mom in her new rig! Many hikes await us :) Special thanks to Maddie's dad, Matt, for hand delivering Gracie's new chariot.

Our little Super Woman...

2009-06-18T10:46:00.000-07:00

No tears, no more needles, and see you in six months.... those were some of the highlights from our very long day at the hospital with cardiology and hematology appointments. Being at the hospital from 10am to 5pm is enough to make anyone grumpy, but Gracie sailed through the appointments. Gracie was an amazing trooper - not one single tear all day! Gracie was fascinated by the echo cardiogram, smiled when her blood pressure was taken (wow!), and "assisted" with the ultrasound. Well, Gracie did growl at the ultrasound tech once and she gave the hematology doctor the stink eye when he listened to her chest with the stethoscope, gotta love that feisty personality! It is such a blessing that Gracie was relaxed for these visits. By the end of our last hospital stay for the Glenn, Gracie cried and became agitated when a nurse, doctor, or anyone would walk into her hospital room and come near her. After so many painful interventions from the sternal wound infections, we worried about the impact of the stress on Gracie. But Gracie's strength of spirit continues to amaze and encourage us.

Gracie's cardiologist gave us good news. Her cardiologist was pleased with her heart function, and says that Gracie is the most stable that she's ever been. Gracie's oxygen saturations are running in the low to mid 80s which is exactly where they should be post Glenn. The blood clot is stable and we can discontinue the lovenox shots. Gracie growth is terrific with both weight (18.6 lbs) and height (27 inches) in the 25th percentile. The Fontan procedure typically occurs at 3 to 5 years of age and around 30 lbs, so for the first time in over a year we aren't planning and preparing for an upcoming heart surgery in the near future. Gracie's next cardiology appointment will be in six months!

Six months without any planned cardiology appointments is a bit of a culture shock after being prescribed an adrenaline filled, surgery driven schedule since learning about Gracie's heart in March of 2008. As the cardiologist said six months, my mind flashed back to our heart schedule over the last fifteen months: biweekly ultrasounds and echos during my pregnancy, Gracie's first heart surgery at seven days old, four cath procedures, one dislodged coil requiring emergency removal from her PA, two more heart surgeries, four months of hospital time with lots of follow up appointments, two 911 calls due to aspiration, one life flight back to Children's, feeding tubes, shots, medications, PIC lines... The highs and lows hit at times with an intensity unlike anything I could have ever imagined. I realize what a gift it is that we are entering this period of "stillness"- a time to let go of the past and not dwell on the unknowns of tomorrow, but to enjoy the peace of today.

Happy 10 Month Birthday, Gigi!

2009-06-04T10:06:00.000-07:00

Happy Birthday, Gracie. The past 10 months have been full your many accomplishments. You have overcome so much, and we continue to be in awe of your bright eyes and big smiles. You are such a happy baby and we are thankful for your sweet little laugh every day.

Bath time has become so much more relaxing! Who knew taking a bath could be so much fun.

Cuddling with Daddy requires a lot more space these days.

Riding in the car seat got more hip without all of that extra padding.

From feeding tubes to feeding frenzy, this is one little girl who loves to eat...

Except her peas...

Story time is infinitely more exciting now, turning those pages and touching the pictures is fascinating.

From tiny and fragile, to a strong and vibrant little girl! The sky is the limit, sweetheart!

The Silvercloud

2009-05-27T08:32:00.000-07:00

This past weekend we enjoyed a wonderful "trip" to the Silvercloud Inn on Ruston Way in Tacoma. I say "trip" because this beautiful place is only 20 minutes from where we live, but on a sunny day it feels like a Pacific NW paradise. During Gracie's hospital stay for the Glenn when the days turned into weeks and more complications came up than what we anticipated, we decided that we would do something special to celebrate when Gracie was feeling better and we had made it past this point on Gracie's heart journey. We couldn't have asked for better weather or a more picturesque setting. Our hotel felt like we were sleeping on a boat and was built on pilings over the water on Commencement Bay.

We enjoyed a pic nic dinner in the hotel room and walks by the water.

Gracie resting after a long chat on her cell phone.

The view from our room. It doesn't get any better than this!

What's new with Gracie

2009-05-26T10:53:00.000-07:00

Welcome to the 25th percentile, Baby! Who hooo! At Gracie's pediatrician visit recently she weighed in at close to 18 lbs which puts her significantly up from her last visit after discharge from the hospital. This jump from the 10th to the 25th percentile is despite Gracie spitting out multiple batches of peas, carrots, sweet potatoes, bananas and pears. Gracie is a very discriminating eater these days and mostly enjoys her bottle, oatmeal and squash.

Gracie is making good progress with physical therapy and our house has become tummy time central, with multiple stations to try to keep Gracie interested in spending time on her stomach to develop those neck and back muscles after all of those weeks spent on her back in the hospital. Her legs are super strong, so once Gracie builds upper body strength and starts to crawl there will be no stopping her!

Gracie is still being treated for the blood clot which developed from a central line while she was in the hospital. We met with hematology yesterday for labs and an ultrasound, which showed no change in the clot. At this point there is very little chance that the clot will travel, but it is also fairly unlikely that the clot will dissolve. The challenge that the clot poses is that it blocks access for future heart cath procedures which will be necessary, but we will cross that bridge when we come to it. For now we are looking at finishing the Lovenox shots mid June, and going back to aspirin. Gracie has a Cardiology appointment in a couple of weeks and we are optimistic that there will be a good report. All signs show that Gracie's heart is doing well - she is growing and has tons of energy.

Gracie's first boat ride

2009-05-15T11:06:00.000-07:00

Gracie enjoyed her first boat ride during Granny and Papa's visit on the Rhododendron Ferry from Point Defiance to Vashon Island. Gracie is still working on getting her sea legs but she thought the salty smelling air was pretty funny.

Lunch with Granny and Papa on Vashon Island.

Mother's Day

2009-05-10T10:39:00.000-07:00

Gorgeous Mother's Day flowers from Paul's parents - thank you Mara and Jim!

All the moms and daughters!

Three Generations.

The Tulips!

2009-05-01T10:44:00.000-07:00

The tulips have arrived and spring is here! A couple of years ago I spent a full weekend in October decked out completely in Goretex in the pouring rain planting close to 200 tulip bulbs all over our yard. I couldn't wait for Gracie to see the tulips this spring and check out all of the fantastic colors. Gracie mostly enjoyed kicking the big yellow ones!

Gracie is on the loose

2009-04-10T15:48:00.000-07:00

Posted Apr 20, 2009 12:01pm

What a difference a few weeks at home can make! It has been very exciting to watch Gracie grow stronger every day and relax in the comforts of home. Since coming home Gracie has gained over a pound and reestablished her enthusiasm for eating. Gracie is becoming more and more animated with smiling, laughing and making new sounds. She loves story time and is fascinated by turning the pages and touching the pictures.

Gracie's follow up appointments in Seattle have gone well. Gracie's heart function is good and all indications are that the infection has been contained by the the antibiotics. Gracie's cardiologist gave us the go ahead for Gracie to be out and about... so Gracie is officially on the loose! Gracie's first ever dinner out was at Pizzeria Fondi in Gig Harbor Uptown. Gracie's also been to Spiro's for lunch, Target for diapers, Harbor Greens and Fred Meyer for groceries, and probably most exciting... REI in Seattle to buy a jogging stroller (in pink and chocolate brown). The jogging stroller opened up a whole new exciting world for us with Gracie. We've taken numerous long walks around Gig Harbor enjoying the sights of spring. Also the new Gig Harbor YMCA has an indoor track which is stroller friendly, and Gracie has been spotted cruising around the track in her pink Adidas work out outfit. So watch out, Gracie may be showing up in a Starbucks, Ann Taylor Loft or bank near you soon.

The countdown is on for simplifying Gracie's medical care. Gracie's PIC line should be coming out this Friday which will end the IV antibiotic regimen. Next week we will go back to Seattle for an ultrasound of the blood clot which hopefully will have cleared up and then we can go back to aspirin instead of the Lovenox shots. We are looking forward to a wonderful summer and are hoping to make some travel plans to Portland and Ohio, and possibly even Hawaii this fall.

We Made It!!!

2009-03-31T15:54:00.000-07:00

Posted Mar 31, 2009 2:49am

Yeah!!!!! After four weeks up in Seattle, we finally made it home!!! Sunday afternoon the sun was shining as we pulled out of the hospital, and it felt like an amazing victory after a long journey to cross the Tacoma Narrows Bridge into Gig Harbor with Gracie in her car seat in the back of the car. Gracie is settling back into life at home very well. Gracie has been studying her home surroundings carefully and perks up when she sees something she recognizes as if to say "hey, I remember this!" She is resting well and eating well, and we are so happy to have her back in a quiet, peaceful environment where she can recover.

These first few weeks until the end of April are pretty involved for us with home medical care. Gracie needs IV antibiotics every 8 hours, injections every 12 hours of a blood thinner for the blood clot, medications every 6 & 8 hours in addition to daily medications, and a monitored feeding schedule to make sure she is getting enough calories. We have done all of this type of home care before, so we know that while this seems like a lot right now life will get a lot easier once we are past this time period.

Check out the latest ER episode which was about kids like Gracie with Congenital Heart Defects and have been through open heart surgeries:
http://www.hulu.com/videos/search?query=ER
Season 15 Episode 21

Thank you for your support and prayers for Gracie. We are glad to put this chapter behind us, and are looking forward to life getting back to normal and hopefully not having to worry about surgery for a couple more years.

Smiles

2009-03-22T16:02:00.000-07:00

Posted Mar 22, 2009 5:22pm

Today is the day that we have been waiting for what seems like an eternity... Gracie got her smiles back! Even though her lab results have been going in the right direction for the past couple of days, Gracie has had these big sad eyes that seemed to say "I am so unhappy and uncomfortable right now." These morning Gracie was grinning from ear to ear, and could hardly contain herself while we read her one of her favorite books, The Tickle Monsters. Gracie took a couple of ounces by bottle, which is also exciting. There isn't a lab test out there that can bring the same peace of mind as Gracie smiling and letting us know that she is feeling better.

15 Message(s)

Posted Mar 26, 2009 9:09am

by Daniel Linquist
Smiles on her face bring tears to my eyes. Words can't express my joy for you all. Prayers and love to all,
Holly, Daniel and Annika

Posted Mar 26, 2009 12:08am

by debby mummfelnagle
Way to go Gracie! Your fan club is hoping, praying and cheering you on!

Posted Mar 23, 2009 8:12pm

by Mark Kadoshima
So true...

Posted Mar 23, 2009 2:11pm

by Barbara Mitchell Briner
So happy for all of you!!!

Posted Mar 23, 2009 11:46am

by Tonneka Dawson
Good news! Thinking of you and hoping for more smiles from Gracie.

~Tonneka Dawson

Posted Mar 23, 2009 9:36am

by Paula Ohlmeyer

We are Smiling too for all of you! More answered prayer!

Love to you

Posted Mar 22, 2009 11:43pm

by Sarah Mostofi
Praise God! What a little bundle of joy! You can't beat those smiles!

Posted Mar 22, 2009 9:12pm

by Judy Swain
Wonderful news and answers to many prayers. Congrats on the old Grace shining through.

Judy Swain

Posted Mar 22, 2009 6:52pm

by Brad Bates

That's awesome! Gracie's smiles must be contagious because she's got us smiling, too!

Brad & Staci

Posted Mar 22, 2009 6:49pm

by Kathy Ohlmeyer

That makes us smile, too. So wonderful to hear the good news.
Love,
Aunt Kathy and uncle Bill

Posted Mar 22, 2009 6:48pm

by Suzanne Dubois
Smiles! I am so happy for you! It is so wonderful when you get your baby back. Good job Gracie!

Posted Mar 22, 2009 6:09pm

by Hal Osburn
Thats great. Happy to hear the good news.

Hal & Shirley

Posted Mar 22, 2009 5:56pm

by Doug Carter
FANTASTIC!! Glad to see that Gracie is taking care of you two some. :-) Doug and Kay

Posted Mar 22, 2009 5:41pm

by Samantha Steinberg
Yay, Gracie! We are os glad that she is feeling better and that things are moving in the right direction!

Love,
Samantha, Matt, & Nate

Posted Mar 22, 2009 5:39pm

by Jim Heath
This is so good to hear. The photo with the binkie is encouraging as well.

-- GM & GF Heath

And the good news is

2009-03-20T16:08:00.000-07:00

Posted Mar 20, 2009 11:14pm

We are out of the ICU! We moved to the floor today. Gracie's numbers looked good this morning so they removed one of the chest tubes that was flushing the infection. Gracie is getting more of her spunk back, and she is starting to seem like her old self. We will probably be in the hospital working out some issues for a week or two. Gracie has a blood clot in her leg from an IV line which they have been doing ultrasounds on and are following. We are also coming down on several medications which is a slow process. Unfortunately, Gracie had to go back on the NG feeding tube today because she won't take her bottle. Gracie used to be such a great eater, so we are hoping that the feeding issues are temporary and that she won't need the tube long term. Gracie had a PIC line installed a couple of days ago and we anticipate that she will need to be on IV antibiotics for another 4 or 5 weeks. We are very excited that we are moving in the direction of going home!!

Good Day

2009-03-18T16:10:00.000-07:00

Posted Mar 18, 2009 11:56pm

Gracie had a good day today. Today both her white blood cell count and her CRP were down. Gracie hasn't run fever for the past 48 hours and her heart rate has come down as well - all good signs. The doctors are discussing the timing of taking out the chest tube irrigation system if things continue to look positive. We are hopeful that if the numbers continue to look good for the next couple of days and Gracie is still without fever, we may have turned the corner.

Today is the one year anniversary of the beginning of our Heart Journey with Gracie, when Gracie was prenatally diagnosed with Hypoplastic Right Heart Syndrome at 20 weeks old. We are so thankful that Gracie was prenatally diagnosed so that there was a plan in place when Gracie was born and the doctors had time to study her heart. As the weeks of my pregnancy progressed, we had many opportunities to catch glimpses of Gracie in action though the ultrasounds. Some of our favorite prenatal ultrasound memories of Gracie include: seeing her hiccup and her whole body wiggle, seeing her stick her tounge out, watching her lips move as if she was singing or talking to herself, and watching the way she would bring her hands up towards her face before going to sleep (which she still does sometimes). We fell in love with this precious little one from the very beginning. Gracie has brought such joy and deeper meaning into our lives, and we couln't imagine our world without her.

Waiting

2009-03-17T16:14:00.000-07:00

Posted Mar 17, 2009 12:26am

One of the tough things that we remember about Gracie fighting this infection for six weeks last fall is that it involves a lot of waiting... Waiting for lab results everyday that reveal her white blood cell count and CRP level, waiting for cultures to see if they are coming back negative for growth (usually 48 hours), waiting and watching to see if everyday Gracie is showing any physical signs that the infection is getting worse or getting better. It's just a lot of waiting and watching, and looking for trends that things are improving. Today, Gracie's white blood cell count was elevated and her CRP level was down - a mixed report. Gracie has been running fevers and her heart rate is high. The doctors are still puzzled by this infection in that it is so rare, and so rare for one patient to have it twice.

So for now we are working hard to keep Gracie entertained and comfortable, and keep ourselves entertained when Gracie is tired of us trying to entertain her. We have several of Gracie's favorite CDs we play and sing to her, Gracie's favorite toys Firefly and Puppy made the trip to the hospital as well as her favorite crib mirror. We have had some really nice roommates in the ICU and we also know a couple of other families of heart kids in the ICU, which makes things a little easier.

Infection #2

2009-03-14T16:17:00.000-07:00

Infection #2

Posted Mar 14, 2009 9:02pm

Unfortunately today cultures came back from the deeper sternum tissue and they are positive for serratia, the same infection Gracie had last fall which made her so sick. Now Gracie has two infections she is fighting. Serratia is a very uncommon infection, so there is some question as to whether the infection from last fall ever was fully gone. Although, given her good weight gain and growth it doesn't make sense that she has still had the infection this entire time. It is good that the doctors were aggressive in setting up the irrigation system and started treating the infection in this manner immediately. However, the irrigation system is very uncomfortable for Gracie and we have been having a difficult time getting her settled. Gracie hasn't been eating and she has had to go back on oxygen because her oxygen levels are low. Gracie has come through this before, we just need her to keep fighting hard.

Back in the ICU

2009-03-13T08:24:00.000-07:00

Back in the ICU

Posted Mar 13, 2009 3:02pm

We are back in the ICU after yesterday's procedure. During the procedure the doctors could see that Gracie's sternum was not healing back together and there was fluid which confirmed that she does have an infection. They took numerous cultures and so far only the very superficial cultures have come back positive for infection which indicates that this is not a deeper infection. The cultures also indicate that this is not the same infection as last time, and they are still waiting for the cultures to continue to grow to be able to further identify exactly what the bacteria is. Right now Gracie is set up with an irrigation system of two chest tubes to assist with treating the infection. This is a much less invasive system than the wound vac she had last fall and it does not require that she be heavily sedated. Because of Gracie's history they are being aggressive with the treatment. Gracie will remain in the ICU with the irrigation system until the cultures come back negative for a period of time.

We are feeling stronger and more positive than yesterday. Gracie came off the ventilator an hour ago and should be able to eat later this afternoon. We are able to hold her and she'll be on pain medications to keep her comfortable. Her heart is still looking great, so we are hopeful that this infection is just a temporary set back. Thank you for keeping Gracie in your hearts, she is such a remarkable little girl.

Infection

2009-03-12T08:26:00.000-07:00

Infection

Posted Mar 12, 2009 12:01pm

Gracie is going back to the Operating Room today. The past couple of days she has been very uncomfortable and fussy, and yesterday the skin around her incision began to look red and puffy. This morning the incision looks worse and her white blood cell count and CRP levels are elevated indicating that an infection is present. Gracie's doctors tell us that it is extremely rare to have one infection like she did last fall, and the fact that she now has a second infection is even more rare. Infectious Disease is being consulted to see if this is a larger problem with her immune system. When they go back to the OR today they will be able to do a culture to see if this is the same infection as last time or if it is a different infection. There aren't words to describe the anguish that we feel watching Gracie go through all of this. We ask that you please hope and pray that this is a very superficial wound infection that can be quickly cured with antibiotics and that Gracie doesn't have a larger problem with her immune system.

On a positive note, Gracie's heart function is very good. Her oxygen saturations have been in the upper 80s and even low 90s which is better than what the doctors had expected. When she is calm her heart rate is lower than it ever has been indicating that her heart isn't working nearly as hard as it used to.

2009-03-09T08:29:00.000-07:00

Improving!

Posted Mar 9, 2009 12:23pm

After a couple of tough days for Gracie in the ICU, we are happy to report that Gracie is making good progress. Gracie will be leaving the ICU today and we are starting to plan for going home. Gracie came off oxygen last night, and her oxygen saturations have been in the 80s (which is exactly where the doctors want them to be). Gracie is still on several pain medications, but her discomfort has been more manageable. Gracie is getting her appetite back, and has been taking her bottle. Gracie has been running fevers on and off, so they have taken blood cultures to check for infection and so far no infection has shown up. Gracie is still pretty swollen and it will take time for her system to adjust and get rid of the excess fluid. We believe that we are through the toughest time period and now we are focusing on recovery and getting our little girl strong.

Rough Recovery

2009-03-07T08:31:00.000-08:00

Rough Recovery

Posted Mar 7, 2009 1:24pm

Gracie is having a rough time in the ICU. She is experiencing the "glenn headaches" that can occur after this surgery as her body adjusts to the new flow of blood to the head and lungs. Gracie has been on a lot of pain medications to help make her more comfortable but the doctors want to be careful not to over sedate her because she was taken off the ventilator yesterday and is now breathing on her own. The doctors hope that the headaches will subside in a couple of days, but for now Gracie is pretty unhappy. Overall her health is good with a couple of concerns - her pressures are higher than the doctors would like to see and her oxygen saturations have been lower then they would like, so they will be watching her closely over the next day. Thank you for your kinds words, and please continue to keep Gracie in your thoughts and prayers as she recovers.

Out if Surgery

2009-03-06T08:34:00.000-08:00

Out of Surgery!

Posted Mar 6, 2009 3:30pm

Gracie is on her way out of surgery, and the initial report is very good. The surgery went as planned, with no complications during surgery. Gracie was on bypass for about 15 minutes. They did not have to stop her heart, her heart rhythm and function is good, and she did not have excessive bleeding. We could not be happier and more relieved with this news. We are on our way back to the ICU to be with our sweet baby girl. Thank you so much for your support.

In Surgery

2009-03-06T06:37:00.000-08:00

In Surgery

Posted Mar 6, 2009 11:28am

We just left Gracie with the anesthesia team for surgery. Her surgeon anticipates that she will be in surgery for about four hours, so we hope to be with Gracie in the ICU by early afternoon. The surgery team will be communicating with us throughout the surgery and will be letting us know when she has gone on bypass (heart lung machine) and when they have finished working on her heart. We are optimistic that things will go smoothly, and one of her surgeons this morning again commented that her heart anatomy looked positive for this procedure.

We are thankful Gracie's surgery was delayed a couple of days so that we had more time with Gracie and were able to ease into the hospital process a little bit more slowly. We also had more time to reflect on how much progress Gracie has made since her last hospital stay, how strong she is, and think about all of the wonderful future plans we have for our beautiful daughter.

Please send positive thoughts and prayers the procedure will be successful without complications and that Gracie will have a quick recovery.

Surgery Rescheduled 3/6

2009-03-03T08:39:00.000-08:00

Surgery Rescheduled 3/6

Posted Mar 3, 2009 6:59pm

Just a quick update to let you know that Gracie's surgery has been rescheduled to 8:00am Friday 3/6, due to some staffing issues at the hospital. We arrived in Seattle as planned on Monday afternoon and attended Gracie's presurgery appointments today. Everyone at the hospital was really pleased with how well Gracie is doing, her weight is now 14lbs 9oz and her lenth is 25 inches. In four weeks she's grown an inch and put on 9 oz! We know that Friday will be a difficult day, but we are feeling strong going into the surgery and confident that Gracie is in good hands here at Children's Hospital.

Happy Valentine's Day!

2009-02-16T07:33:00.000-08:00

Our Sweet Little Valentine...

This past week was Congenital Heart Defect (CHD) Awareness week. The video below was put together by Lauren, and adult CHD survivor who is 21 and has Hypoplastic Right Heart Syndrome like Gracie. Look for Gracie's sweet picture in the heart warriors section at around 4 minutes 30 seconds.

Make video montages at www.OneTrueMedia.com

Big Week!

2009-02-11T21:52:00.000-08:00

Happy 6 Month Birthday, Gracie!

Last week was big week beginning with February 1st, Gracie's 6 month Birthday! It is really amazing to think about everything that has happened in the last six months. Gracie has grown so much, gotten so strong, and we love seeing her personality emerge more and more each day. Gracie is fascinated with her hands, feet and knees and she loves watching herself in the mirror. Sometimes when Gracie sees herself (and mama) in the mirror she gets so excited that she starts squealing and laughing, so sweet. Gracie's favorite toy is Puppy, a brightly colored dog with paws that honk and ears that rattle. Puppy always accompanies us on visits to Children's Hospital. Gracie loves listening to music and we sing her to sleep every night to our redition of "Gracie Grace Irene" to the music of Little Liza Jane. And wow, can this little one eat! During the day she will take 180 ml feeds every two hours like clockwork, and if that bottle is even five minutes late she will definitely pipe up and let you know. I still think of her feeds in terms of ml not ounces, because when we first came home from the hospital I would painstakingly try to convince her to take just 5 ml by mouth with a binky trainer attached to a syringe with milk. Slowly she worked up to 10 ml, then 15 ml and so on. By the time Gracie broke 100 ml by bottle in November and was off her NG tube I was ecstatic! Gracie now weighs in at just over 14 lbs and she is tracking at around the 10 - 15 percentile for growth. Her doctors have been really pleased with her weight gain.

Over the last six months we have also had our share of hospital stays and sleepless nights - 11 weeks total at Children's, two open heart surgeries, four heart cathertizations, two 911 calls, one ambulance ride, one helicopter ride back to Children's, and one mommy and daddy doing their best to become pseudo nurses at home administering IV antibiotics via PIC line, blood thinner shots, tube feeds, physical therapy and countless medication doses. We love you so much, Gracie and would do anything to help you feel better and get stronger. We will always be by your side and your happiness and health mean everything to us.

On Monday, we went back to Children's for Gracie's pre Glenn heart catheter. Dr Johnston placed a stint in her BT shunt to reinforce and reopen the existing shunt which had narrowed from 3mm to 1.7mm. Dr Johnston was overall pleased with her heart function and size of her pulmonary arteries. Gracie recovered from the procedure quickly and we were back home the next day. Gracie will be presented at the next heart conference and we will know more about her surgery timing on Tuesday 2/17 when we go back to Childrens for an echo cardiogram and meeting with Dr Johnston.

Our week ended with a very nice visit from GM (grandmother) and GF (grandfather) from Portland. Gracie never fails to dissappoint members of her fan club with her exceptional cuteness and dazzling charm :)

Granny & Papa's visit and the arrival of Baby Rachel

2009-01-28T09:36:00.000-08:00

Gracie the day before Granny & Papa arrive :)

Last week was very exciting as we welcomed baby Rachel Beverly, Gracie's newest cousin, into the family on 1/19/09! Weighing in at close to 9 lbs, Rachel has adorable chubby cheeks and a full head of dark hair. It was so sweet to see Rachel's adoring big sister's, Sasha and Ava, at the delivery. Sasha picked out a special outfit complete with sparkling shoes to welcome Rachel, and Ava wanted to immediately sit on her mom's lap to "see baby."

Granny and Papa flew out all the way from Dayton, Ohio to meet baby Rachel and spend time with Gracie. There was no shortage of smiles from Gracie as she showed off all of her new tricks to Granny and Papa.

Home for Christmas

2008-12-25T16:59:00.000-08:00

We are very happy to report that we had a quiet and restful Christmas at home in Gig Harbor with Gracie. On Christmas Eve we braved the snow, ice and slush for Gracie's cardiology appointment in Seattle. Gracie received a great report from her cardiologist. Gracie's oxygen levels are right where they need to be and her heart function is good. Also good news is that Gracie doesn't need to go back to the daily shots that she had been on previously, and is back on aspirin instead as a blood thinner.

The plan over the next couple of months will be for Gracie to have a heart catheter procedure towards the end of January and her next heart surgery towards the end of February. This will be Gracie's forth catheter procedure, but it is necessary for the doctors to gather information about her heart pressure and flow for the surgery. Gracie's heart surgery in February will be the first in a two step process to permanently redirect blood flow in her heart and will also remove the temporary goretex shunt placed after birth. The surgery that Gracie will undergo is called the Glenn shunt and will attach the superior vena cava to the pulmonary arteries. When Gracie is around three years old she will have the Fontan surgery which connects the inferior vena cava to the superior vena cava. The final result of these surgeries will be a complete bypass of the right ventricle, so blood flows back from the body directly into the lungs.

In other news... Gracie is now weighing in at a robust 11.5 lbs and she is looking forward to getting into her brand new wardrobe of 3-6 month sized outfits. Some of Gracie's favorite activities include: splashing Daddy while in her baby bathtub, playing "who is that baby in the mirror" with Mama, saying "hi" and "uh oh," and laughing in her bouncy seat. If you are looking for a holiday laugh, check out Gracie, Jen, Paul, Dexter and niece Sasha starring in Office Max's Elf Yourself video at: http://elfyourself.jibjab.com/view/eQrBKlqJFnBLdcqS.

Hope the holidays have found you all well and we will keep you posted in the New Year.
Jen, Paul & Gracie

Home Again

2008-11-30T17:28:00.000-08:00

We are back home again, and Gracie is doing well. The three of us had a very nice, quiet Thanksgiving at the hospital with a delicious carry out dinner from Cafe Flora, one of Jen's favorite vegetarian restaurants as the hospital cafeteria was not serving Tofurky :) It is always such a relief to come back home after the stress of sleepless nights at the hospital and the overwhelming feeling of leaving our home under such chaotic circumstances.

The doctors aren't sure what caused the severe vomiting episode which brought us back to the hospital. Gracie had an upper GI study which was normal, and they changed her formula to something that may be more gentle on her stomach. For most kids with a healthy heart, a little aspiration into the lungs after spitting up would not be a big deal. But for Gracie, who has lower oxygen levels to begin with, aspiration can drop her oxygen levels significantly. Gracie was on oxygen for a few days and an antibiotic to help heal her lung, and now her oxygen levels have returned to her normal range.

Grace's cardiologist had considered doing a heart catheter procedure to look more closely at the narrowing in her temporary shunt, but the anesthesiologists recommended waiting a few weeks until her lungs fully heal before that procedure takes place. So they have put Gracie on a new medication which is a stronger blood thinner than the aspirin that she was on previously. The downside of this new medication is that it involves twice daily shots. Gracie has been a good sport about the shots, however her mother nearly passed out the first time she saw the needle. After some practicing we have worked out a pretty good system and are using a subcutaneous catheter for the shots so that Gracie only has to feel the shot once a week when the catheter is changed.

We continue to be thankful for improvements that Gracie is making and are enjoying watching her little personality evolve. Her weight is now over 10 lbs and she loves to eat. Gracie smiles more and more each day. When we arrived at Children's Hospital ICU in Seattle after her ride in the helicopter from Tacoma (no, we did not get to ride with her) Gracie smiled at us as if to say "See Mom & Dad, I'm just fine."

Back at the Hospital

2008-11-25T11:10:00.000-08:00

More excitement last night than we would have liked: Around 10PM Grace started vomiting heavily and was having difficulty breathing. We called paramedics who took her to Mary Bridge in Tacoma. Doctors made sure she was stable there, and then had her airlifted to Children's in Seattle at 3AM or so. Doctors think vomit may have ended up in her right lung, which hampered bloodflow and breathing. The echocardiogram performed this morning looked generally acceptable, but doctors have noticed some narrowing in the shunt.

Children's is going to keep her here for about a week, it sounds like, so that the fluid in the lungs can clear and they can do a catheter procedure early next week to study bloodflow. Hopefully they can use the data from next week's catheterization as the basis for the next surgery (the Glen Shunt) which will take place at some point between next week and next March depending on a number of factors.

So after a great three weeks or so at home, we're back at the hospital for now, but in good hands.