12.27.10 - Post-Christmas and Pre-surgery

We had a wonderful Christmas.  It was fun, relaxing and Liam received WAY too many toys thanks to our super-generous families!!  In fact, yesterday was spent going through all his old toys to separate the keepers from the donaters...I think there were probably way too many keepers, but the donation stack is still impressive!

Christmas Eve was spent at my parents house with my brother and his family, my aunt and our Gigi.  Liam loves having a lot of people to entertain...He is definitely a big ham when it comes to attention.  Christmas day was spent at our house with Dustin's sister and her family.  All the kids had a great time opening all the gifts and playing new Wii games.  We also gave lots of rides in Liam's new Radio Flyer wagon...what a hit that was!  Inside rides, no less, as it was a brisk 40 degrees here (sorry for those of you who received snowstorms for Christmas!). 

Today Liam had two appointments - Synagis for the 1st and helmet check for the 2nd.  The pulmonologist cleared him for surgery and said he sounds great.  We are to continue the breathing treatments through surgery day and beyond if possible.  Liam is much more relaxed now with the treatments, which is good.  His second helmet is still plain white and will remain unpainted until after surgery...just easier to clean without paint on it.  His head is already started to change again within the short week he has had it.  I'm hoping he can wear it a good bit in the hospital, but we won't push anything.

And tomorrow is pre-op at MCCH.  We go in at 10:00 and then have a meeting with the surgeon in the afternoon.  I am a little confused at what all they will be doing tomorrow, since last time he had his cath the day prior to surgery...I guess they will just be taking his vitals and history....?  I am anxious to meet with the surgeon, as we have not discussed the actual plan of surgery yet.  As far as I understand, Liam will be getting a new pulmonary conduit and valve and a different type that what he has now to see if it works better (lasts!) than the one they used previously.    And we will also find out WHAT TIME surgery will be....It's seems strange that I don't know this yet....But I believe they said if there was a younger baby that needed it, they would be first and us second. 

This time around is a little less planned out than before, which is good and bad for me.  Good because I am an OVERplanner anyways, so knowing every little detail months before doesn't help me worry less.  I actually handle stress better when it comes quick - less time to think about it and respond I guess.  This time just feels very different that the last surgery...I don't know why I keep comparing them...I guess that's all you have to compare it to though.  My outlook is brighter - Liam is healthier, bigger and stronger than he was the last time which hopefully will make recovery time easier.  But, he is much more aware, MOBILE and has a more defined personality this time...which is going to make some things much more difficult.  

Well, I could go on and on forever about all the thoughts bubbling around in my head right now.  I'll post details from tomorrow's happenings tomorrow night.  I am really feeling hopeful and anxious in a good way for Wednesday.  I just want to get it behind us as soon as possible so we can pick up where we left off and get on with our blessed life together!!  I'll leave you tonight with some holiday photos!

****Prayer request:  Please pray for our little heart friend Tucker (Liam's heart roomie) - He is currently battling RSV and a bad respiratory infection and is in the hospital.  Pray he regains his strength so he can go home soon! *****
 

Liam loving his new Radio Flyer wagon!

Mr. Sewious (yes, we watch a lot of Wonder Pets!)

Opening a gift with Mimi

Funny how the wrapping is more interesting than the present inside!

More presents!

Can I go play now?!

12.25.10 - Merry Christmas!!

 

Merry Christmas yall!!

12.20.10 - 5 Days

Christmas is just pass our halfway point from now until Liam's surgery.  The New Year holds many new changes for our family and I can only say I'm feeling anxious.  I've been pretty good lately at "keeping busy" to keep my mind out of places it does not need to go, but as Christmas draws near, so does the surgery.  And some days that's all I can think about.

This week is also bittersweet for me because it's my last full week at my job.  They have become like family to me, supporting me, encouraging me, especially this past year....I can truly say I'm really going to miss seeing them everyday.   I think I am going to be doing some things for them from home, which will be nice to still have a hand in my work and still get to see them every so often.  But I am also really looking forward to getting to see Liam more...growing up...hopefully watch his first steps, be there for the milestones coming up.  Big changes....

Despite all the changes, our family is doing really well.  I've never felt closer to my family than I do right now, and that is the best feeling in the world.  They are everything to me.  I love the holidays for that reason - to spend time with those I love.  The Christmas shopping is done, boxes full of gifts from my online shopping excursion crowd our entryway and I love it.  I simply love this time of year. Period.  And I'm determined not to let anything steal my joy...
 

 "Shout for joy to the LORD, all the earth.
 Worship the LORD with gladness; 

come before him with joyful songs.
Know that the LORD is God. 

It is he who made us, and we are his; 

we are his people, the sheep of his pasture.

Enter his gates with thanksgiving 

and his courts with praise; 

give thanks to him and praise his name. 

For the LORD is good and his love endures forever;

his faithfulness continues through all generations."

Psalm 100:1-5

12.16.10 - Yogurt mohawk

Things have been relatively quiet on the homefront.  Something I long for in busy times like these. We've just been enjoying this time with Liam and family before the end of the month when things will get crazy again. 

I realized a few weeks back when Liam would only eat yogurt, that yogurt makes, of all things, natural hair gel!  So, the post for tonight is a compilation of last night's evening at dinner....the yogurt mohawk!

Ready....

...Set....

....GO!

Get it good, mom!

Ok, not quite as fun as I thought....

There's a smile!  Our little ham!

 *****  Prayer request please!  A little heart hero, Mason, just had his BT Shunt surgery last Friday and is still having a lot of unexplained pain and distress.  Please pray they find the source of his hurting, as it is wearing on his momma and family to see him in so much pain. *****

12.13.10 - Christmas parties and SANTA!

This past weekend was a FULL one to say the least!  After Dustin and I got married, we began a tradition of having a big annual Christmas party each year for our family and friends.  We actually started it as a birthday bash, since Dustin and I are one day apart, December 9th and 10th, but we didn't want people to feel like they had to bring gifts, so we changed it to a Christmas party instead.  Last year, after Liam was born, we decided not to have our party for obvious reasons.  This year, we had it planned before we found out about Liam's surgery...I was SO close to cancelling it again this year...but we decided to go ahead with it and send Liam to stay the night with my parents.  It was hard for me to get in the spirit this year...to even get motivated to do all the food and decorating even.  But it did help give me something else to focus on and a night that was truly a lot of fun!  I'm glad we went ahead with it, as it gave us time to spend with our friends. 

On Saturday, our Amazing Little Hearts Support group had their annual Christmas party and that was a lot of fun too!  We met some new parents and Liam got to see Santa for the FIRST time!  Yes, and it will be the only time this season unfortunately, so I'm glad Santa was there!

Liam was fine at first....not so much after a few minutes!

Liam with Dr. Mendeloff (Dr. M), our surgeon

Liam continues to do well...healthy and happy on the outside.  Some people have been asking us about his helmet recently.  He grew out of his helmet, so they approved us for a second one.  The cranial people still think his head could be a little more round in certain spots, so they felt like continuing treatment would be the best option.  We had measurements taken last week and he will get his new helmet on the 22nd, just in time for Christmas! 

I am doing my best to stay positive, (and busy!).  It is very different with this surgery approaching.  I feel very numb in a sense to everything.  Like I'm getting hardened by all of this, and I'm not sure I like that.  Everyday I realize new things about myself and how I cope with stress and difficult times and I wonder how it's changing me...some days I see clearly how it has already changed me, but sometimes I worry about it.  I think it's really this time of year on top of it all.  I don't want to have a "one year ago today" story during the holidays....But I am trying to see the blessings of having it this time of year also, which there are many.  We are blessed to have it sooner, rather than later, to have family here from out of town to support us, to be able to enjoy Christmas at home with our family before, and to be that much more thankful to God for giving us the greatest gift ever known to man...Jesus.  

Lord, guide my heart tonight into your peaceful presence, Your Christmas spirit.  Be enough for me and fill me with expectant joy of the promises you have given.  We thank you for being our one and only Living Father who gave away your only Son for our salvation, because of your true and endless love for us.  Bless all of those who pray for us and support us on our journey.  Amen.

12.8.10 - Surgery date and updates...

We have a surgery date.  They actually called us last Friday (which is pretty quick knowing how long they usually take to get back with us, which adds to my urgency to get this done!).  Surgery date is Wednesday, December 29.  Good and bad to this, we were hoping they could get us in sooner, for peace of mind and just to get it over with, but also for insurance purposes.  I hate that insurance concerns are something you have to consider, but our deductible is not cheap (as I'm sure most people's aren't in today's world), so we were hoping everything would fall under this year.  We are on the waiting list if a date comes available sooner....I told them even if it's tomorrow, we'll take it!

I don't think it's really hit me yet.  Parts of it have definitely started creeping into my mind of what the last surgery was like and I'm trying to stay positive and stay focused on the holiday season and joy of what Christmas means.  There is also just so much going on this time of year, which is ending up being a good thing to keep my mind busy and out of places it doesn't need to go =)

My biggest concern is keeping Liam healthy the next 3 weeks.  He is still on breathing treatments 2x per day, and I am thankful for that.  It seems to keep him clear in his lungs and I'm glad this year he is old enough to have that type of treatment available.  But with family and all coming for the holidays, it just makes me nervous....I'm in constant surrender to the Lord for this...and that ultimately His timing will prevail, no matter how much earthly planning is done =)

Liam is doing well right now.  Feeding him has become a challenge!  He is currently not wanting ANYTHING to do with purees, which I don't blame him.  We also go through a whole container of "crunchies" everyday it seems....As long as he'll eat something I guess.  I was able to get him to eat some scrambled eggs this morning.  I fear a picky eater!  I never thought I'd be that mom who would resort to feeding her child whatever he wanted just so he'd eat, but I think I'm there =)  He is tolerating soft table foods very well it seems, so that is great news.  We were planning on getting another swallow study done to see about working with the liquid side of things, but now I'm putting that off until after he has recovered from surgery.  Hopefully, we can pick up where we left off.

Hope everyone is enjoying the season so far!  Blessings from our family to yours!

12.5.10 - Team Liam Marathon!!

Team Liam 2010 Runners (left to right) Dustin, Brandon, Tara, Anna, Eric, Matt, Missy, Amanda, (Candy - not shown)

Today was the event we had been preparing for for the past year...Marathon day! Or half-marathon day for most Team Liam runners.  It was a HUGE success and our runners all did great!  The jerseys turned out fantastic, so we were able to wear them proud and spread awareness of our cause amongst 22,000 other runners that participated in the Dallas White Rock Marathon this morning.  They had both a Boston-qualifying full marathon and also a half-marathon.

We had nine runners total, including Dustin and myself.  One runner participated in the full marathon and was seconds away from qualifying for Boston!  Go Eric!!  The rest of us did great in the half, finishing with personal records and many were first timers, including me!  The event was such an awesome experience...I teared up a couple times during the race, just thinking about the race like our journey through Liam's CHD and what we were really running for.  It was such a great end to a weekend shadowed by recent news of an upcoming surgery.

I was able to document my run of the race through Facebook today on my phone, so below is my compilation of my post from there so you could experience the journey with me!


At the start...We all had different pace times, so many of us started in different waves.  This is Amanda and I waiting (for almost an hour since we were pretty far in the back of the line!) for our turn to start!

Post on FB at Start: 
"Team Liam 2010 is about to take off!!! Pray for warmer weather this morning! We going to the start line now...let's rock the Rock! Go Team Liam!!"

Post on FB at mile 3: 
"Just passed mile 3"

Mile 5 marker....came quicker than expected...which was a GOOD thing!  It was chilly, at about 38 degrees for race time.  I ditched my hat and coat already, as I was getting warm!  The streets were lined with everyone's jackets, gloves, hats, etc that they no longer needed.  These items get donated to the shelters and go for a good cause!

Post on FB at mile 5: 
"Oh ya I started at 9:00... Doing pretty good'!!"

Post on FB at mile 6.5 :
"This is an awesome experience...I'm gettin emotional .... Mile 6.5 ..my cause is so special,..I love you Liam...Go Team Liam!"

Mile 8 - Started loosing track a little of what mile we were on!  This is the point were I started feeling a little tired!!  My legs started getting a little heavier and pace slowed a bit.  By the next couple miles, I was getting pretty sore.

Post on FB at Mile 10:
"Mile 10... I'm hurting... I want to quit.. But CHDs run 24/7...I'm keeping on to win the fight, to spread hope, awareness and to find a cure!!! Go team liam!!"

The race ended at 13.1 miles....I made it in just over 3 hours, which was better than my goal time of 3:30.  Yes, I had not done a lot of training, so I walked a lot, but was happy that I made it to the finish!  I was in tears at the end, as Dustin met me with open arms and my medal...Finished at last!!

Post on FB after we made it home:
"Finished! About 3 hours ago :) Dustin had a 1hr 52min, my time 3hrs something....glad we all made it safe and sound!! Thanks to all our Team Liam runners: Amanda, Candy, Eric, Missy, Matt, Brandon and Anna -Yall ROCK!!"

What an amazing experience.  We are truly blessed to have such wonderful friends who committed and ran for our cause!  Our fundraising for The Children's Heart Foundation has also been a HUGE success.  Right now, including offline donations not noted on our giving page, we have raised over $8,000!!  We have until Christmas to accept donations, so I'm excited that we may reach our goal of $10,000.  I have been overwhelmed at the support of our loved ones, friends, corporate sponsors and many others who have financially supported our cause.  We send a big THANKS to all of you!

It has been a great day...And it couldn't have been better timing.  Although I may not be able to walk tomorrow =), it was 100% worth it.  We love you, sweet Liam....You are the greatest blessing and we would walk (or run!) a million miles for you ANY day!!  Thanks again to all our runners and supporters!  Go TEAM LIAM!!

12.2.10 -How I really feel...

Numb. Torn. Mad. Broken.

Even though I had prepared myself for today's results, it is just now really sinking in what this means for us....again...and so SOON. 

All day today I have been very numb to everything.  I didn't shed any tears throughout the day, kept a smile on my face and just took everything in stride.  In fact, I almost started feeling guilty that I wasn't feeling anything....But tonight it really hit me.  After my parents and Dustin left, it was just Liam and I here at MCCH, in the same exact room that we stayed in the night before Liam's last surgery (they wanted to keep him overnight to monitor him, giving his "unique" trend towards having respiratory issues).  Memories of that night from just this past June flooded back to me.  As I rocked Liam to sleep tonight I cried out to God that I just don't think I can go through this again....everything is still so fresh from his last surgery...and things were starting to, dare I say, be normal for us...or OUR sense of normal at least.

So here we are again...on the brink of yet another surgery.  This will make heart surgery #3 for Liam, at only 15 months old.  The cardiologist came in to talk to us, but basically just reiterated what the cath doctor had already told us.   Since they would like to have Liam's surgery within the next month or so, Dustin and I have made the decision to schedule it as soon as possible.  We have our reasons for that, and we feel that this is best.  No reason to delay the inevitable especially when there is no reason why they would need to wait.  So Dr. Verma (card) is going to talk with our surgeon, Dr. M, tomorrow and see what the next step is to schedule the surgery. 

If there is a positive note on this surgery, it would be that this may not be an "open" heart surgery, which means he may not have to go on bypass.  To my understanding, it may be possible that they can switch out the conduit and valve without opening his heart, but they won't know until they get in there.

On the flipside though, it is still a major heart surgery, just maybe a little bit more straightforward this time around.

It's been a long, trying day...time to get some rest tonight....dearest thanks to all of you who continue to lift us up in prayer. 

Not good news...

Not good news from the cath...The entire pulmonary conduit has shrunk in width from 10mm to between 3-5mm and has significant narrowing. The pulmonary valve has also deteriorated and his heart is having issues with backflow. Final conclusion is that he will need another surgery in the next few weeks. I'll update more tonight after our meeting with our cardiologist.

12.1.10 - Heart Cath Tomorrow

Liam has his heart cath procedure tomorrow.  We had a check up with the pulmonologist Monday and Liam's lungs sound clear and he is good to go....the waiting will finally be over.  Hopefully this test will tell us that his heart can wait for another surgery for awhile.

Meanwhile, tonight is full of preparations for tomorrow's events.  The cath is scheduled for 11:00 am and then Liam will stay overnight in the hospital tomorrow night for monitoring.  I've been so busy lately that I haven't really started getting nervous until tonight....Liam has only had one cath before this one and it was the day before surgery, so it wasn't one that was going to tell us anything new, really.  The cath doctor already told us that if there is a problem with his valve, because of the location of the narrowing, there is really nothing he can do in the cath to fix it.  The only thing we may have on our side is time.  And time is what I am praying we have...at least as much as possible.

We did manage to get in some silly moments tonight....

This is one of Liam's (and mommy's) favorite laundry games (I had to get creative when he wasn't mobile to take him with me WHILE getting the laundry put away!).  I take the laundry to our rooms with Liam in the basket too....

I push and spin him around in it and he just giggles and giggles! Such a silly boy we have! 
 

I'll keep everyone posted tomorrow as the day progresses...we really appreciate all the thoughts and prayers!