Friday, December 31, 2010

12.31.10 - All we leave behind...

On this New Year's eve, being in the hospital is turning out to be quite symbolic for me.  It represents a brokeness made whole again, a newness, a fragility, but also a new sense of hope.  Leaving behind all this past year had for us and starting new again.  A new piece of my son's heart, a new hope for a better future for him and new changes in our family make me hopeful that 2011 will be a better year.

Liam continues to do well with recovery.  He has slept most of the day today and when he has been awake has been slowly returning to himself.  His feedings are going good and they have weaned down the oxygen to 5 liters at 45% concentration.  He does have some lingering fluid on his lungs, so they started him on a new diuretic to help clear it up.  We are hoping to possibly go home Sunday or Monday if things keep progressing on track.

****Prayer request - Please pray for the Everett family - baby Parker lost his fight with his CHD at only 11 days old.  Please pray for their family for peace and comfort during this very difficult time of grieving. **** 

We wish everyone a happy and healthy New Year!

Cookies and soda kinda night...

Last night was a LONG night. Liam was up pretty much round the clock. He had cycles where ge would flail around, kicking his legs and yelling for about an hour then would pass out and sleep for about 30-45 minutes before waking up and starting over again. He never seemed to be in any pain, but more just uncomfortable and seemed to have a LOT of energy....but he never slept longer than an hour at a time.

Needless to say, I gave up on sleep last night and resorted to eating a bag of cookies and a bottle of soda to stay up with him. Because they had not yet taken his chest tube out, we had to be careful when he was kicking around that he didn't accidentally pull it out. So I was bedside most of the night.

His chest tube came out this morning. He really is doing great and moving along very fast for recovery. Today they will work on feeding and oxygen weaning. Right now he is getting his formula 125 ml per gtube every 3 hours and for the oxygen he is down to 5 liters at 45% concentration. We have not started feeding by mouth yet. They are having a nutritionist and speech therapist come by to talk to us about feeding, which seems to be pretty routine for us to have with any hospital stay.

I'm going home for a bit to take a nap while Dustin and my mom take over. My mom just text me that he is sound asleep now...thank goodness!!

Thursday, December 30, 2010

12.30.10 - Long day, but good report

Today was a long day.  The weaning has officially started and boy is it different having a 15 month old versus an 8 month old!  Wiggily, wiggily and squirmy ALL day.  I left around 11 am today and was home to nap and shower and got back here around 4, but Dustin and my mom said he had been awake and squirmy the whole time I was gone.  Not necessarily in a bad mood or in pain, but definitely waking up more from the sedation.  He still has not fully opened his eyes, but has been awake and alert.  He responds to my voice and has been waving bye, clicking his mouth to call for our cats (tha'ts his verbal way of saying "kitty" we think, because he does it all the time while he is chasing after them!) and pointing to things in the room.  He is also saying momma and dada a lot.   I know most of this is the Precedex wearing off (makes him babble like crazy!) - they stopped that med this morning.  He is now on a Ketamine drip which they are starting to wean down, Tylenol/Oxycodone for pain and then a combo of Ativan and Fentanyl for just before his IPV treatments.  He JUST fell asleep after being a squirmy worm all day.  I did finally get to hold him this afternoon, which was great.

They did take out his catheter this morning, but his chest tube stayed in because he still had some drainage this morning.  They said that it would definitely come out tomorrow morning, so hopefully that will help his comfort level also.

He is responding well to the new respiratory treatment IPV.  Its basically an oxygen mask they hold to his face and it delivers high burst of medication into his lungs to help "pop" out the portion of his lung that are not all the way dilated...I think I got all my words right in saying that!  Oh the medical terms/definitions still don't come easy for me!

They said we would probably be in the heart unit through the weekend.  Apparently over holiday weekends, they tend to leave you were you are at and not move patients around much.  This was great news as we would prefer to be here than on the regular floor any day!

Well, tomorrow is New Year's Eve!  Can't believe how fast this past year has flown by, but I am SO ready to get it behind us.  It was definitely the toughest year for me and I think it's safe to say that for my whole family as well. 

We actually got a chance to take a few pictures today finally, but most came out kinda blurry because we were hesitant to use our flash.  It's been hard because we haven't wanted to stimulate Liam in any unnecessary way, so we've opted not to bust out our big camera.  I've only taken a few quick shots with my iPhone until today.  But since he was clearly more awake this afternoon, we decided we should take the opportunity to take some pics...and Liam probably looks a little blurry because he was constantly in motion!

Liam and daddy

Liam and mommy

Our nice big room!

Liam pausing in his wiggliness....Poor thing, we eventually  had to tie his arms down so he wouldn't pull off his oxygen mask!

Thank you again to all of you who continue to pray for us!  All the caring messages and actions have been a blessing for us as well!  We are truly blessed and in awe of everyone's generosity and love for our family. 

Morning update

Liam continued to improve overnight. He did sleep for a couple of 2-3 hr stretches, so we both got some much needed rest.

The plan for this morning is to pull his chest tube and catheter, start dialing down on the meds and possibly start tube feeding some pedialyte. They are also starting him on CVP treatments and IVP (if I heard that correctly) treatments for some lingering respiratory issues. They said his xray this morning showed his left lung has some areas that still need to expand more. All in all his breathing is much less labored and strained than from last night and his sats are better. They've dialed him down a couple notches on the big "oxgenator" too. He is now on 12 liters from 14. I think we are in the clear from having to go back on the vent...Praise God for his mighty work!!

Doctor hasn't been by yet, but if there is more to update than I gathered from our nurse I'll post again this morning. Although I feel I may have my hands full soon with a cranky child!

Oh and Liam turns 15 months old today! Happy 15 months little man...boy how you have grown! We love you so much!!

Wednesday, December 29, 2010

Post-Op report

Well it's 10 pm here and it's been a LONG day...that still isn't finished.  Liam is doing really well.  He remains OFF the vent, which is a HUGE praise.  We still are not completely out of the woods on this yet, but the prognosis is good that he will stay off.  He is on the "turbo" oxygen machine (I forgot the appropriate medical term they called it) that is pumping in 14 liters of oxygen at 100% concentration...pretty strong.  In fact, in my opinion, I think that is what he is most uncomfortable with right now.  He is still pretty heavily sedated, but he fights it a lot of the our main role this afternoon and evening has been to not let him get out of control and keep him as calm as possible.  Once he starts getting agitated and mad, his respiratory problems get worse.  Although the blood gases they have been getting back have been completely normal and really good, he is still working hard to breathe most of the time.   Their plan for tonight is to let him rest and not mess with him unless absolutely needed...I second that motion for sure!

The surgeon was able to see what was causing the stenosis, or narrowing, of his homograft conduit.  He said there was a build-up of scar tissue, and actually said he had never seen a case like Liam's with as much scar tissue as he had.  They will be sending his old homograft off for some testing, but I'm not really sure if there are any results we'll be getting from that.  It didn't sit well with me that the surgeon "had never seen this before", but he did explain that this could have been an early stage of calcification, and that most often he doesn't see this stage of that process.  I guess no one likes to hear that they are the only case of something gone wrong...but our hopes and focus are now on the new Contegra conduit they put in.  Thankfully they were able to move up substantially in size, which gives us more time before his next surgery, when he will eventually outgrow it.

This has been a whole different experience than our previous surgeries.  We are in the new heart unit, which is set up a little differently (mainly for me, the restrooms are outside the unit, down the hall by the main pediatric waiting area).  But the main factor is Liam....boy how 6 months can really grow-up a child fast!  He has turned out to be a strong feisty one!  He has been aware of a lot going on today.  I guess because last time, he was sedated to sleep for the first few days after surgery, so we never had to deal with the pain aspects.  Now, Liam is awake enough to recognize the pain and discomfort, so that has been hard to manage for us.  I realized there is little time to leave his bedside as he is in constant need of quieting and comforting...and rightly so.  He is visibly cranky, hungry, tired and just plain miserable right now.  And it is really hard to not be able to do much about it.  Praise God he has had a good 20 minute stretch these past few minutes of no flailing around or crying....the longest he has gone all day.

I'm sure there is more I want to share...just can't think of everything right now.  I am off to google the scarring thing, and then hopefully maybe catch a few hours of sleep. Will update in the morning, goodnight!

Update - Recovery

Liam is back in the unit in recovery mode. He is off the ventalator but is having some respiratory distress/issues. They are trying to keep him sedated enough to stay calm, but awake enough to breathe on his own. His breathing is heavy and labored right now and he also has stridor and some partial lung collapse in his right lung, but thankfully he has held his own so far. We are praying they can keep his meds at the right mix to ease his breathing and stay off the vent.

Thank you for all the encouraging messages - we thank everyone for your prayers - we are praising God for a good surgery and are trusting Him for his plan for us this week.

Out of surgery

Liam is out of surgery - everything went great and we are just waiting to go back to see him - and I think he is already off the vent! He was wheeled past us before going back to the unit and had an oxygen mask on...good sign! We are so blessed...Praise God!

Update - Almost done

Liam is off bypass and they are closing him up. Just went back to tour the new heart unit where well be staying. Should be out within the hour.

They were able to use a larger conduit size than anticipated, from 10 mm to 14, so that was great news!

Praise God! More updates in a bit...

Update - On bypass

They just reported that they have placed him on the bypass should be done in a couple hours...Liam is doing great so far.

Just went back to the OR...

Liam went back to the OR about 20 minutes ago.  They said the surgery would probably take about 5 hours.  I am suprised at how non-emotional I am today - they did give Liam some Versed to help calm him down, so that was good.  He was in good spirits this morning and very happy, despite his early morning wake-up call.

We still haven't met with the surgeon, he is supposed to come by any minute.  But we feel comfortable doing this again.  We spoke with his assistant and she said they would be replacing his homograft conduit with a Contegra conduit.  This one is supposed to function well in cases where the homografts have failed in the past.

I will keep updates going as much as possible today.  Thank you all for your prayers!

Tuesday, December 28, 2010

12.28.10 - Twas the night

It seems so strange to me that quickly coming on the heels of such a wonderful Christmas holiday, we have to bear a hard upcoming week.  We are getting used to the rollercoaster ride of being a heart family.  I can actually honestly say that this time around, I feel like a seasoned heart mom.  And, I am in good spirits today, despite the long week we have in front of us. 

The pre-op went well today.  Vitals were good, lungs clear and medical history updated (I think this was the 20th time I've given our hospital his medical history...I'm wondering why it's not saved each time?).  Liam was VERY good all day.  Poor thing though, he is much more aware of things being uncomfortable - he had to have blood drawn and an x-ray - he wasn't very happy.  But after reciting the "Hot Diggity Dog" song from Mickey Mouse Clubhouse enough times, he finally settled down (that was the best .99 cent I have ever spent on iTunes).  He did work up quite an appetite as we lunched in the hospital waiting for our meeting with the surgeon....the one that ended up getting rescheduled until tomorrow morning before surgery.  But I knew the routine and planned accordingly, so it didn't bother me in the slightest.  It was actually, dare I say, somewhat nice to be out of the house for a bit!

So here we are.  Going about our daily routine with dinner time, bath time, bedtime and one more tube feeding before he has to fast.  Surgery will be first thing tomorrow morning at 7 am.  We have to be there at 6 to get checked in a "pre-opped" again.  I just wanted to say a heartfelt thank you to all the texts, facebook messages, calls, emails and blog comments from all of you who have been thinking about us and praying for us.  We could not get through this without your support and we are humbled and grateful for every one of you who chooses to walk this journey with us. 

I have recently found a different sort of peace in the Lord's prayer that I haven't felt before.  I think it is a beautiful prayer for exactly what we need from God...

Our Father, who art in heaven, hallowed be thy name. Thy Kingdom come, thy will be done, on earth as it is in heaven. Give us this day our daily bread. And forgive us our trespasses, as we forgive those who trespass against us. And lead us not into temptation, but deliver us from evil. For thine is the kingdom, the power and the glory, for ever and ever.

Monday, December 27, 2010

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?!

Saturday, December 25, 2010

12.25.10 - Merry Christmas!!

Merry Christmas yall!!

Monday, December 20, 2010

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

Thursday, December 16, 2010

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!




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. *****

Monday, December 13, 2010

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 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.

Wednesday, December 8, 2010

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!

Sunday, December 5, 2010

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 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!!

Thursday, December 2, 2010

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.

Wednesday, December 1, 2010

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 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!

Monday, November 29, 2010

11.29.10 - Season of frenzy

Oh, the holidays.  How I love thee...let me count the ways...

Christmas Cards
Giving them and receiving them!  Yes, each year since I have been married, I have handmade our Christmas cards.  I love card making and paper crafting (although mainly just card making) so I decided it would be a fun tradition to start making our card each year. This year will be my 5th edition.  Here is one of my favorites from a previous years....No sneak peak at this year's design though!  

Although I am not particularly fond of decking out my own halls, I LOVE to see other's homes and houses glammed up for the holiday season.  I am bugging my husband to put up lights on the house this year...It's just a great tradition, especially for kids.  I love that when we were little, my parents would take us for drives around a bunch of neighborhoods to see the spectacular light displays of all the homes. 

Cold Weather
Yes, even in Texas around this time of year it starts "gettin' chilly outside".  I love the cold weather, even if we only get a day or two of it between now and Christmas, it just makes the season.  I dream of a white Christmas, but those are a rarity around these parts....but I'll take any drop in temperature below 50 degrees!

And best of all...Of course you all know I LOVE my family.  I love the holidays because I get special time to spend with them, and I love that!  So many memories cling to the holiday season like no other time of year. 

There are many, many more things I love about the holiday season.  But unfortunately, my favorites are usually always coupled with things I don't really like about this time of time just FLIES so many things get crammed into the last month of the I often don't slow down enough to really ENJOY the things I love most about this season and how I seem to get caught up in things I seem to have to get done....Why do I do that??

This year, I am trying to really focus on not missing out what's really important....on not getting wrapped up in all the FRENZY this time of year can bring, but instead learning how to navigate this season with a to-do list of giving, humility, family and love at the top.

Thursday, November 25, 2010

11.25.10 - Giving Thanks

We have had a wonderful day of family, fun and food!  Dustin and I participated in the annual Dallas Turkey Trot this morning, and it was COLD!!  The cold front blew in just in time for race time, but we still managed to get going and run.  Then came our day of family and fun!  Compared to last year's, it was just as fun and memorable, but I did contribute a little to the cooking this year =)

I've thought a lot this Thanksgiving about what I am thankful for...and honestly, this post would be entirely too long if I mentioned everything!  My whole life is a perfect montage of thankful moments and memories.  God has orchestrated each minute of my life with such precision that I cannot help but be thankful for each precious moment that goes by.  Every time I look at my beautiful family, the ones here, far away, and those that have gone before us, I just get so overwhelmed by God's goodness and His grace.

Most of all, I am thankful for God leading me to this exact point in time, with those I love surrounding me and walking with me through this journey called life. Thank you to all of you who have been with us on this road, supporting us, encouraging us and offering your love and care for our family.

"So then, just as you received Christ Jesus as Lord, continue to live your lives in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness."  Colossians 2:6-7

Tuesday, November 23, 2010

11.23.10 - Pre-Thanksgiving feast!

This won't be a totally word-free post, but the pictures speak for themselves!  In my preparations for our Thanksgiving feast Thursday, I decided Liam would be a good judge for my sweet potato casserole...
Hmmm...this is fun....
and YUMMY!!



Sunday, November 21, 2010

11.21.10 - BIG milestone!

This morning something was telling me...Let's just make this a lazy morning and let Liam decide when he wants to get up.  Usually, I go get him about 5:00 am for his first tube feeding, most of the time he's asleep and will stay asleep until about 7.  He was waking up here and there, but no major cries, so I let him be, while I stayed in bed to catch a few last Zzzz's.  Finally, about 6:30, I was feeling guilty for possibly missing my window for his tube feeding, so I got up and and got it ready.  Well, when I walked into his room to get him, this is what I saw.....

Yes!  Liam SAT UP ON HIS OWN in his crib!!  I know this milestone should have normally happened around 6 months ago, but we have literally been working on this with our PT and very hard on our own for what seems like FOREVER with slow progress...this is the gateway for him to have the strength to be able to crawl and develop normally from that perspective.  I was just FLOORED!  He had struggled because of lack of tummy time, low muscle tone in his chest and some sensory issues with being on his tummy and knees.  Plus, he just wouldn't stay on his tummy to do tummy time, we think because of his tube.

I'm not quite sure how long he had been sitting up for, because we haven't worked on how to get back down yet!  I did check on him about 4:00 this a.m. and he was still laying down, so hopefully he wasn't up too long.

Just can't say how proud I am of our little man!  Go Liam!

Wednesday, November 17, 2010

11.17.10 - On the up and up

Liam is recovering well from whatever respiratory infection he had.  We still don't know what the test results revealed, but thankfully we seem to be on the other side of it now.  If only we can keep it this way for the next few weeks!

Liam is down to three breathing treatments a day and sounds better each day.  He is still getting wheezy whenever he is playing hard and gets out of breath, but no more coughing or congestion, so that is a good sign.  We also went through the entire weekend without any alarms from the oximeter going off, which meant Liam stayed above 90 throughout the night and for spot checks throughout the day.  All in all it seems as though he is on the up and up right now.

My dad is currently watching Liam for us while I finish out the year at work to help train someone for my job so I can stay at home come January.  We are so blessed to have someone close to help us out in this way, especially now that we are house bound with Liam again for the germy season.  We had no idea what to expect as far as Liam's immune response post his repair surgery, but clearly he is still very fragile.  I am already getting anxious about the holidays regarding the germs.  But I know above all, the Lord is even in control of germs and I'm praying that we don't have to sacrifice some needed time with our family in fear of them....but I will have our sanitizer ready!

We have very busy weeks ahead.  I have an appointment scheduled with a feeding clinic on the 29th that I am really excited about.  I have heard wonderful things about their program and it's an all-inclusive, intensive program.  I am at the point right now where I can tell Liam is ready to start oral eating more and drinking, but I am TERRIFIED to handle things on my own.  We have been introducing some puffs and a few bites of soft small table foods occasionally which he is handling great.  But I know I really need to work on the drinking thing, but I have NO idea where to even begin.  We only had a short month or so where we were offering Liam the sippy cup, but since then have stopped due to fears that he was still aspirating.  I feel really guilty for not moving forward with the thickened liquids and being more aggressive with his therapy.  But to be honest I am SCARED to even try anything.  I guess being in the hospital for suspected aspiration pneumonia is a cause of my worries....It is going to be great to have a new evaluation of where he is at and hopefully I can get the training I need as well!

We also have Liam's synagis on the 29th coupled with a check up with the pulmonologist to hopefully get a clearance for his cath that Thursday, Dec. 2.  And I'm not sure if I mentioned this in an earlier post or not, but we did get a chance to speak with the cath doctor, Dr. Lashus, for a while prior to his scheduled cath last week.  After having reviewed Liam's case, Dr. Lashus thinks that his stenosis will not require immediate intervention.  He said he would be very surprised if his findings revealed the need for an immediate repair.  Although he did say it is always a possibility because the Echo is limited in the details it can provide (especially for this particular issue), he said other cases similar to Liam's have been able to postpone intervention for a period of time, whether it be 6 months or a year.  He said the cath would give the cardiologist better information for a baseline comparative, so they could monitor Liam and decide when the best time for surgical intervention would be.  This was a blessing to my ears.  With all of this happening so close to the holidays, I was fearing we may be having Christmas in the hospital this year.  Although we know it is still a possibility, we are encouraged that there is a good possibility we have some more time before another surgery is needed.

Next week, we have the Turkey Trot run Thanksgiving Day as a precursor to the big marathon Dec. 5!  Team Liam has already been such a huge success as we have raised over $6,000 so far for the Children's Heart Foundation!  There is still time left to make donations - You can visit our website at for more info!  Thanks to all of you who have supported our cause!  T-shirts and jerseys will be coming soon!

Saturday, November 13, 2010

11.13.10 - Coming round the corner...QUICK!

Liam had a good night last night.  Slept through, only woke up a couple times, one which he got tangled up in the oximeter cord...Geez that thing scares me.  Let's have my child sleep with a long cord in his crib?!  Thankfully, no alarms went off except for the battery alarm, which means Liam stayed above 90% sats all night.  Praise God!

This morning has been uneventful except for his morning spit up he has been having the last few mornings.  I am assuming its all the drainage from overnight that makes him a little queasy after his morning feeding.  I can deal with that as long as he keeps tolerating his day time feedings, which he has.

They have already rescheduled the heart cath for Thursday, December 2....right around the corner.  I figured it would be pushed a little longer out, but I guess not.  The sooner the better for me though.

Speaking of right around the corner, Christmas is quickly approaching, which means a LOT of things around the Johnson household need to start getting done.  I worked on my annual Christmas card design this morning and I am really excited about it!  I just need a free hour to go to the craft store to get my supplies. 

This time of year also means the big marathon for Team Liam is right around the corner as well.  In fact, I started panicking last night because my training has been...well, it really has NOT been...Worst case scenario, I think I can at least finish...even if I am crawling on all fours by that point!  Liam has just been #1 for me lately, which is where he needs to be and the whole reason why we created Team Liam.  Our running jerseys have been ordered and the t-shirts have been designed...just waiting to get them printed and we are set!  We also have a generic design that we will be selling of BOTH the t-shirts and running jerseys year round for anyone who is interested.  I need to get it set up and the picture uploaded of what they will look like and then pre-sales can begin! 

Off to start on some laundry before the little one awakens...Happy Saturday everyone!

Friday, November 12, 2010

11.12.10 - Breathing treatments and updates...

The visit to the pulmonologist turned into a full day of testing.  Our visit started with a swab test for flu and RSV which thankfully came back negative.  Liam's O2 sats were down from 95 at the hospital to 90 when we arrived, so they were pretty concerned.  He also had a slight fever of 99.4, which was up slightly from his vitals at the hospital.  We received two breathing treatments in the office while the pulmonologist conferred with our cardiologist to get a game plan going.  So, the plan is to do 5 treatments a day for 4 days (1st day being yesterday), then drop to three times per day for the next week.  They also do not want his O2 levels to drop below 90 AT ALL.  Since we currently do not use a home pulse oximeter, one is being delivered today.  Liam is to be spot checked before and after his treatments during the day and then he is to wear it at night while he sleeps.  If it drops below 90 for any reason, we are to call the office and may have to be admitted to the hospital....UGH.  Their main worry is they don't want Liam hovering in the 80s and we not know it, which could put added stress on his already stressed heart muscles.  He is also taking an antibiotic, as they decided to treat him for bronchitis, since they do not know without further testing what exactly he has.

The pulmonologist then ordered us to go down the street (aka across town!) to Children's Hospital to get a virus swab lab done and a chest x-ray.  So after a quick stop home for lunch, a breathing treatment and a nap for Liam, we went over to Children's.  The virus swab was quick and easy, and then we had to wait quit a bit for the x-ray.  For the x-ray they had a very strange contraption they put Liam in, like a plastic tube around his body, which he cried like he was being tortured...that was not easy to watch as I had to hold his hands up while he looked at me with such scared little crying eyes....thankfully it was over in about 5 minutes.  We then had more waiting to get a CD (which I tried to look at on my computer, but it is showing as a blank CD....we'll see about that one) of the results for the cardiologist, since they cannot access this particular hospitals records....Ugh again.  Finally we made our trip home about 5:00 pm....ordered Chinese food...and went to bed.  What a LONG day.  But I'm glad we got him into to see the pulmonologist...We have GOT to keep Liam healthy the next few weeks so he can get the cath done.  I'm also praying his O2 oximeter does not go below 90!    It has not been delivered yet, so that's in our favor at least!

Thank you to everyone for all the encouraging texts, messages and prayers!  Will keep posting on our progress!

Thursday, November 11, 2010

Cath Postponed

We arrived at the cath lab at 6:00 this morning and just got home.  They had to postpone the cath because Liam is wheezing and coughing this morning, and they didn't want to take the risk with intubation and anesthesia. 

I can tell you how much I hate waiting....especially for some serious test results.  The not knowing part of anything just drives me insane.  So today's news just added that extra stress...but I am determined to keep my eyes fixed on Jesus and know that this is EXACTLY where He wants us, His timing for everything our life entails.

I scheduled an appointment later this morning with the pulmonologist so hopefully we can get some treatment or explanation as to why the wheezing keeps coming up like this.  I also just received a very encouraging call from our insurance case manager, who is working hard to get things taken care of for us on that end of things too. 

Thank you for all your prayers this morning.  Ill post another update tonight to update on the lung doc visit.

Tuesday, November 9, 2010

11.9.10 - River Moments

Renewed. Rested. At peace.

The weekend away had a great impact on me.  The time was there to reconnect with old friends and more importantly, God.  I have felt so distant for a really long everyone..."out of the loop" you might say.  The theme was perfect - Jesus Calling...and call me He did.

I wanted to share an "aha-moment" with you.  A true, God inspired and spoken word through my soul that resonated with me so profound.  It all started when a few of us decided to walk down to the river one evening....

The path leading down to the river was long, steep and rocky.  Passable, very much so, but with caution.  We started our journey about 6:00 pm Saturday night.  Still sunny out, it was a beautiful evening.  The walk down the path went pretty smoothly.  As we cautiously traveled the ground, careful not to stub our toes on rocks or slip on the more steep areas of the path, we ventured down, giggling and chatting, each of us with an excited anticipation of what was to come...of finally getting to see the river, spending some time with each other and stealing some sweet quiet time with the Lord.  I had expectations of meeting the Lord there, to soak in His grace and glory and let Him speak to me in the quiet.

We finally made it down the path, where the river stood, so quietly trickling by.  It was God's creation of beauty...symbolism at it's finest.  The six of us meandered for a small time together and then soon dispersed to our own quiet areas to explore, rest and reflect.  For me, this is what I had been waiting for...I had longed for a time like this with the soul was thirsty and I took time to drink and fill my spirit once again.  When I surrendered to Him my fears, His comfort and peace met me right where I was a precious time I will never was my river moment.

After awhile, we noticed the sun hanging low and shadows looming in on our path back up to our camp.  Time to go.  While I wish the stay could have been longer, or more frequent for me, I knew we had to start back before dusk quickly turned into the night.  So off we went on the long, steep and rocky path, but going up this time.  I never gave much thought about having to go back up the path.  One of my friends jokingly mentioned the rough time we would have trying to get back up, but I carelessly brushed it off, focusing solely on the expectations I had for my time at the river.

The walk up was tough.  Our legs burned, our faces grew red, our breath grew rapid and short.  Even though we all wanted to say we were making it up just fine, it tested and tried all of our physical strength and endurance to make it all the way back up.  For some, the edgy, haphazardly placed rocks were tricky to navigate.  For others, the looming shadows of the evening made it difficult to see the path clearly.  And still for others, it was hard to catch our breath at times.  We encouraged one another to keep pressing through.  We waited for each other to get their footing or catch a breath.  We took turns carrying one another's bibles and water bottles to help lighten the load.  Yet, we all struggled in our own way, to make it back up that path, back to our retreat.

We all made it.  Safe and sound.  Finally back to our camp site.  Back to the level ground and lighted road.  But it wasn't until the next morning, when one of my sweet friends shared how truly difficult that uphill journey had been for her, that the Lord spoke to me about it....

The Lord spoke to me and said, "You see, that uphill journey is your life."  We are all pressing through something....some paths are less rocky than others, have a little more light, are maybe a little less steep, but we are all on a path.  And the river...that is the God moments we have to cling to.  He is what makes the uphill journey worth it.  He gives meaning and purpose for our fatigue, for the sore muscles and lack of breath and the suffering.  We must drink from the Living Water in order to sustain ourselves for our journey.  And without stopping at the river, we have nothing to help get us back up.

The symbolism God revealed to me in that "river moment" was overwhelmingly awesome....He is still speaking to me new things about the relationship between the river and the path....He also revealed to me how He provides the fellowship we need with others to support us on our journeys.  Friends to encourage us when doubt and fear creep in,  friends to help carry the burden when we are weak and friends to point us back to Him when we lose our way.

On the eve of a week that is solely in the Lord's hands in regards to Liam and what the future holds for his heart, I found this to be my comfort, my peace - MY RIVER MOMENT to cling to in the days to come.  For every moment and every walk with Him is purposed and precious in the sight of the Lord.

Friday, November 5, 2010

11.5.10 - Off for some sweet time with Jesus...

I'm traveling today to go spend some much needed time away with Jesus and my precious sisters in Christ at a women's retreat.  I'm looking forward to being refreshed and laying my burdens at His cross...the last few weeks have been rough to say the least and I am weary.  As the next couple months hang in the balance with Liam and his heart situation, this retreat couldn't have come at a more perfect time...but then again, the God of all creation is always just that...perfect.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."  Matthew 11:28-30

Sunday, October 31, 2010

10.31.10 - Halloween Fun and updates...

Well, we didn't do the typical Halloween thing this year...We decided to just have a low key weekend and spend some time with family.  We spent time with our heart families on Saturday at the annual Amazing Little Hearts Halloween party - it was so great to see all the kids in their costumes running around having a great time!  And it was so good to see our heart family friends.

Liam and daddy at MCCH 
Matching shoes!  Like father like son...
Liam and mommy in front of the world's largest indoor tree!  The new Children's Unit at MCCH is just beautiful!
Dena, Tucker, Liam and me...Liam just started pointing this past week.  He was pointing to a giant TV screen aquarium on the wall in front of us!

Saturday, we had our nieces over while their parents went to a Halloween Party...All decked out too!!  Their costumes were great!
Creepy clown and fancy witch! 
The kids, Dustin and I had SO much fun...mainly building block towers and watching Liam knock them all down.  He just loves the girls and has so much fun with them. 

He loves tearing them down...But he also just learned how to stack them up too!
All the kiddos!
Sunday, we all hung out at our house after eating out for lunch and playing at the park.  We had a few trick or treaters at our door tonight, but I put Liam to bed early...he was wiped!!

It was a great weekend, less all the costumes, but it was how we decided to do it this year, and I'm glad we didn't miss the chance to spend time with family! 

Also, just an update....We have scheduled Liam's cath for Thursday, Nov. 11 at 8am.  We are still unsure at what all this may mean for us, but we are trying to prepare ourselves as best as possible.   On a similar front, I had been talking about us making some big changes recently.  One of those changes meant pulling Liam out of daycare for the immediate future.  He needs to stay healthy, so he can get healthy.  The fact that he has not gained weight concerned us, and we feel like whenever he is sick (which had been 70% of the time lately) he just can't get the feeding in to keep him healthy and thriving.  Along with this change, I have decided to finish out the year at my job and then stay at home with Liam full time come January...This was the biggest decision for us, but we feel 100% at peace about it and know we are doing the right thing for our family.  It was very hard, after 5 years at my current company, to tell them my decision.  They have become like family to me, and have been overly supportive and encouraging during our roughest times.  It is going to be very hard to say goodbye.

Just wanted to say thanks again for all the support, love and encouragement from all of you through Liam's journey.  We are turning a new corner, and no matter what the future brings, it is comforting and reassuring to know we have people praying for us and there for us along the way.