Fontan Surgery Update #3

Colin is doing well, the surgeon did have to put a few stitches in both the right and the left AV canal valves. But the good news in the surgeon is happy with it and they got his heart started back up right away (the fear with the valves is they have to stop his heart and there are complications with starting it back up.) Thank God we did not have any problems getting his heart back up and started. 

They are completing the Fontan surgery now. After they finish, we should be able to see him in a couple hours after they finish. He will be a little doped up still but he will be on and off awake. We should be in a regular room hopefully in a day or 2. 

Fontan Surgery Update #2

Just got another update, they just got through the breastbone and are working on getting through the scar tissue. After that, he will be put on heart bypass and they will begin the actual surgery. It is a long day since the actual surgery is only about an hour or two but it takes a long time to get all the IVs and lines in. Next updated will be around noon.

Fontan Surgery Update #1

They took Colin back to the OR this morning at 7:30am. He was nice and loopy from the sleepy medicine. They said it would take about 5-6 hours for his surgery. His surgeon was leaning towards his valve needing some work on it from looking from his last echo. But they won't know until they get in there to see. But it does make his surgery more complicated and if they work on the valve, they will have to stop his heart. Please pray that they can do the surgery without having to touch his valve. 

It was so hard to send him off to the OR this morning. He was telling me he can't wait to see sissy, he missed her already. I have to admit this was the hardest send off yet. Please God watch over our son and his medical team. 

Will update once we get more updates. 

Colin, me and his FROG (Fully Rely on God)

Colin and I this morning waiting on the surgeon

Colin and daddy

Colon after his "happy drugs", being a silly goose

Colin at pre-op getting his EKG

Colin's prize box for each ouch, poke, and prod

Ready or NOT...4 days to the Fontan

We are now 4 days until Colin's Fontan. When Colin was diagnosed with HLHS at 3 days old, we were told about 3 surgeries he would need to survive, but not to "fix" his heart.  The first one he was one week old, the second he was 5 1/2 months old, September will be 4 years since that surgery. And now it's time for the Fontan, which has been hanging over our heads for years. 

It's a double edge sword, he needs the surgery, he will have more energy, will have pink toes and fingers instead of blue, will have a better time gaining weight and growing. I KNOW he needs this surgery. We have been waiting 4 years to be POST- Fontan, which is a big deal, unfortunately there are many kids who never get to see this stage. 

BUT it is EVER so hard to do this again! In the beginning, the first 6 months were a blur. The hospital and lots of doctor appointments`1 was our life and we rolled with the hand we were dealt. BUT we have had almost 4 years of no surgeries, no hospitals, we have lived our lives to the fullest, not letting HLHS decide our life for us. 

I look at this 4 year old that goes 1,000 miles a minute and it hurts to know what he is going to have to encounter in just 4 days! It is weighing heavy on our hearts and it is something we are all trying to cope with. 

But I have faith in God and in our hospital, I will let my faith carry me in this tough time. I know Colin has so many angels watching over him. Matt's grandparents and my grandparents are the best guardian angels he can. Please say a prayer for a successful surgery and a quick and uneventful recovery. Please pray that this is his last intervention needed on his heart. That these 3 surgeries will be enough for his heart to let him live a full and happy fulfilling life even if it is not fixed. 

Please also pray for our heart friend Jacob, who is having his Fontan on the exact same day as Colin, just at a different hospital. And our friend Bodie who is having his on July 29th.  

I will be posting updates as we get them on Tuesday, so please watch this or my Facebook page. 

Colin's Last Hooray/Katherine's Birthday on the river/End of Summer Trip

For Katherine's 7th Birthday and Colin's last weekend to be around people before surgery, we went on a trip with 5 other families to the river. We rented beautiful condos that were right on the river and they also had 2 swimming pools and a big lawn to play on. We are so lucky to have this weekend full of fun family memories with our friends. It was nice before all the craziness of surgery to just sit back and relax on the river. This was the perfect way to end of "SUMMER IN ONE MONTH". In 6 weeks, we completed 5 trips. It was sure busy but WELL worth it, now with just about a week until surgery, we are having quite family time preparing. 

Saturday we got up really early and make the 3 hr drive to get into town just as Landa Park was about to open. Colin LOVED the water slide and must have went up it about 100 times, for 3 straight hours he just went up and down, up and down, over and over again. There is no way ANYONE would be able to tell this kid was just 2 weeks out for a MAJOR OPEN HEART SURGERY. This boy amazes me everyday!

Katherine had a blast swimming with her friends and trying to catch the tadpoles.  The park uses the Comal river water (which is spring fed and is a constant 72 degrees), good thing the water was so cold since there was a heat wave that day, it reached 102!!! After a day of swimming, water slides, playgrounds, and a picnic on the river, we all went back to the condos and swam at the pool and BBQ'ed on the grill on the lawn. The kids had fun at nightfall when the fireflies came out. 

Sunday a very special young lady turned 7 years old! How 7 years flies by so fast. We love this little girl more than anything, she has a heart of gold, she is smart, beautiful, creative, sassy, and is the best daughter and big sister EVER!! We had a birthday party in the condo then headed out for the best party ever, a day on the Guadalupe River!! Katherine has already requested her birthday next year be on the river too!!

Katherine and her girlfriends had such a fun weekend. Katherine has had this group of friends since turning 2 years old, 5 years later they are in her words her "BFFs"!

Colin, my dare devil, spent the day floating down the rapids. Anyone he would find to take him down, he was right there in the tube waiting to do the rapids "AGAIN, AGAIN, AGAIN".

Of course me and the girls loved the rapids as well. I think I could float the river everyday. There is something so peaceful and calming about that place. That's where we plan to retire one day. I wish I could convince my work that we need a satellite office by the river. 

Katherine and Rylie coming down the rapids

Of course everyone had fun exploring and playing on the river, having splashing fights.

Colin and Kannon "rock climbing" on the river

Colin and my parents just chilling on the river

Aunt Lara, Uncle Russell, and Kannon hanging out

Katherine splashing Matt

Sunday night for Katherine's birthday, all 23 of us, went to dinner in the Historic town of Gruene (Green) for dinner at the Gristmill and drinks at the Grapevine wine bar.

WE LOVE ICE CREAM AFTER A DAY ON THE RIVER!!

The Guadalupe River behind our condo

Nature at it's best

Weekend on the water - Rockport, TX

Another installment of our Summer in 1 month.. We got to spend the weekend at a gorgeous house surrounded by water (the front of the house was the bay and the back of the house was on a canal.) Thank you to Matt's parents who rented such wonderful place to play, relax, and have fun. 

The weekend was filled with fishing, the beach, swimming in the canal, but most important.. time spent with our family. The kids LOVED all the fishing! Colin practiced casting for 30 minute on his own and then caught a fish all on his own, no help reeling it in. I have never seen him so concentrated on anything before. He was determined to catch a fish all by himself without any help and he DID! Katherine caught about 4 fish all on her own!

The kids had fun at the beach until we noticed the JELLYFISH invasion..OH NO! Luckily the kids did not get stung.. but I did :). Not too bad though. 

I liked chilling in the canal on my float the most. That was just my speed. It was tough when Monday came and we had to pack up the house and leave. It was just a great location to hang out and just relax.. we need relaxation at this moment in our lives. 

 

Memorial Day Weekend, 10 year anniversary to Charleston, and weekend getaway to the beach

So lots to catch up on since my last update a few weeks ago. As we are doing a whole summer in one month with Colin's surgery being just about a month away, we have been pretty busy living it up. We have done 3 trips out of 5 since mid May. We are home for a few days then off to Rockport, TX for this weekend. I have to admit, it has been fun, it does help keep my mind off of Colin's surgery and keep focused on what's important.. family. 

Memorial Day Weekend

We had a bast going out to Matt's family property for the Annual Memorial Day celebration. Grandpa, Colin, and Matt caught a fish! Katherine and I swam in the pond and Katherine kayaked for the first time and loved it. Even though it drizzled a little, it kept it from being too hot and the kids still had a blast. 

Also Memorial Day Weekend, we had a nice day at the beach with 2 other families. We got there about 9:00am and stayed until about 3:30pm, and the kids still thought it was TOO early to leave the beach! Our kids love the water, sun, and sand! The girls had a blast on the boogie boards, I think Katherine was catching waves for 3 hrs straight! 

10 year wedding anniversary trip - Charleston, SC

Matt and I were lucky to get the chance to take a long weekend trip for our 10 year wedding anniversary. Charleston was such a cute place with lots of history and lots of things to do. We stayed one block away from the water and right in the middle of downtown and all the nice restaurants, bars, and shopping. We had a great boat trip out to Morris Island for beach combing and dolphin watching. After 4 hrs on the beach and the boat ride, we had a nice lunch with drinks and even got to take a NAP! Nice.. huh! The next day we had a great walking tour and went shopping. We got to tour a historic house built in 1803, which I loved! We got to do a lot of cool things and according to my fit bit, in 3 days we walked 16 miles! It was great to have some time just the two of us to de-stress and concentrate on each other as a couple to make sure we have a strong foundation to keep our family strong. I have over 150 pictures, so this is just a short short view of our trip.

Beach Weekend Getaway

Katherine finished 1st grade on Thursday last week, I can't believe the school year is over! She had a great report card and is all ready for 2nd grade. Thursday my parents picked them up for a "camping" trip to a nice RV resort in Jamaica Beach (they are still there, they will return this Wednesday). Matt and I went down early Saturday morning and stayed until Sunday afternoon. Saturday we had a BUSY day.. we went to the beach, had a watermelon eating contest, played putt putt golf, went to the swimming pool and watched an outdoor movie at sunset. WHEW! That was fun! Sunday we went to the beach for about 3 hrs then went back to grill some hamburgers. After that the rain came but I think everyone was pretty wore out, so it was a good time to rest (Friday the kids were at the pool and splashed all day). I imagine today there were at the pool and splashed again all day. 

So coming up we still have a weekend trip with Matt's family, they rented a house on a canal right by the beach and then we also have a weekend trip back to the river with some other families. Once we get back from the river, we will be 2 weeks out from Colin's surgery and will be put on house arrest until the beginning of September. So we really are trying to live it up now.