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.

10.28.10 - New arrivals!

Happy to announce the wonderful blessings our family has received this week (love you Gigi!!):

Joshua Thomas

Ryan Robert

Born 10.27.10 to my wonderful brother and sister in law.  

Such beautiful little blessings!  God is GOOD!!

Excited to FINALLY meet my new little nephews!!

10.26.10 - Cardiology Update...

Liam had his cardiology check up this afternoon.  It has been 3 months since our last visit (post op).  In the past, we have never gone longer than a month, so it was strange going back after being away so long...and even more strange for the news we received.

Liam has always had perfect (for his condition) test results, normal - no signs of any issues or problems, given the ones he already deals with....Today was a bit different.  First was a weight check 19 lbs 14.5 oz, height measurement of 30 inches and an EKG - all looked good.  Next came the Echo.  Liam did great, he was very calm and still as he usually is, every now and then grasping for the "wand".  The tech (who never says a word) made a comment to me "When was your son's condition diagnosed?....Where was he born?"  Almost small talk....weird.  My mind immediately started thinking, why is he asking?  Does he see something?  Of course, I tried to talk myself into believing it was nothing, because in my day now, I always think I am being so paranoid.

Oh and then there was the wait....waiting and waiting.  It's always like that, I came to expect it.  But it seemed a little longer this time.  Finally 2 hours into the appointment, our Cardiologist comes in to talk to us as he usually does.  First, he hits the questions about the hospital stay last week....but he quickly gets off that topic and starts in on this:  "There was a change on the ultrasound today...."  Here we go.

For some strange reason, before the cardiologist started his "review", I got the idea to record our conversation (IPhone apps have been so useful lately!)...weird, I know, but Dustin wasn't able to be there and my recall memory is not the greatest.  I was expecting the usual, everything looks great, what's your feeding game plan, etc. and I wanted Dustin to be able to hear Dr. Verma's advice.  Little did I know, I would be using it to share Dr. Verma's not so great news with him later at home.

Basically, Liam has a significant narrowing of his pulmonary valve at the place where it meets the conduit.  This is causing his blood to flow very fast through the pulmonary valve and conduit and thus, the right side of his heart is having to work extra hard to get the blood to flow through it (His pressure 3 months ago was a 6, today it was 80 - not really sure what that means exactly, but that's a pretty big change fairly quickly).  This was very unexpected for us, as we will now have to schedule a heart cath procedure to find out what is causing the narrowing. Unfortunately, our Dr.s suspicion is that the valve needs replacement...which means another open heart surgery.  But, the cath procedure may be able to delay a surgery by ballooning the area to buy us more time...it all depends on what they find. 

We will be scheduling the cath procedure in the next couple weeks.  Pleas pray for us...this was totally out of left field for us, especially being so close to his last surgery and following on the heels of a recent hospital stay... we are weary, to say the least.  But, we know God is good and He is ALWAYS purposeful in everything He does, so we are trusting in Him and His timing.

10.24.10 - Reflections...

One year ago today was our first whole day at home, as a family.  We brought Liam home from the hospital after his first surgery late Friday afternoon, 10.23.09, my original due date.  The 23rd was a Friday, so we had the whole weekend together before Dustin went back to work.  I remember trying to figure out a feeding routine, trying to learn to be a mom without the hospital environment and just settling in with all the excitements of bringing home our baby.  What a year it has been....

We are truly blessed that from a heart standpoint, Liam has done exceptionally well.  We have had our bumps along the way, but the Lord has led us through them every time, and we are truly blessed.  I never want to take for granted this journey we are on.  I also just wanted to take a moment to thank all of our wonderful friends and family for being there to support us...we know it was hard on you guys as well, and we want to say thank you, from the bottom of our hearts, for always being there, praying for us and Liam.  Support is so important for everyday survival in journey's like ours...It encourages us to keep going, keep fighting and know that we are not alone on the road.

The past week has definitely been one of reflection...I have thought a lot about priorities, perspective and our future.  This week we are making some big decisions, so please pray for us.  We have been praying about these decisions for awhile now, and feel at peace about where we feel God is leading us. 

Liam is continuing to get better each day.  He still has a lot of congestion, but also a good cough, so it is helping to clear him out.  He is tolerating his tube feedings well on the higher calorie, and starting to eat some by mouth again (when he is sick, he never wants to eat).  His activity level is also picking up a bit (which worries me about calorie intake not being sufficient!) which is a good indicator he is feeling better too!   We had a follow up with the pediatrician Friday and she said all is clear and his lungs sound good.  So I guess we are in the clear again!

 

10.21.10 - Home at last...

We are finally at home. They discharged us late yesterday afternoon. Liam continues to do well. He has a lot of congestion still and is coughing quite a bit, but they said the more coughing, the better. He is on a pretty harsh antibiotic which can cause some GI issues that we are monitoring closely at home. So far, it's only been minor diarrhea, so I'm praying it doesn't get any worse. He is still tolerating his full feeds, so I am really glad for that. I plan on having a follow up with our pedi next week, plus we also have our cardiologist appt too.

We did go to his bi-weekly helmet appt this morning. It's possible Liam may have to have a second helmet. With his lack of growth the past few months, they are not seeing the results that they hoped for. Hopefully with our new feeding regimen and staying a bit healthier without daycare sickness, Liam will hopefully be able to hit a growth spurt and grow that head into shape!

It has been nice to spend my days with Liam this week. I hate that it takes him being hospitalized or sick to have that time though. Honestly, I've been struggling a lot lately with priorities...and really since Liam has been born. Everything tugging, pulling at me in every direction.  I can see my spiritual life, my family life, my work life and personal life all suffering because of it.  Maybe on the outside I look like I have it all together, but it is far from that.  My heart yearns and is crying out to be closer to God again, to hear him speak to me and listen.   Is it strange that I enjoy the confines of hospital life?  Maybe because within those times, my true priorities align again.  I have time to meet with God and cast my cares.  I have time to spend with family.  The small, unimportant details that frequently call the shots of my day, all of a sudden don't matter. If only I could translate that to my normal daily life...it only it were that easy.

I know that the source of priorities is God himself.  If the #1 spot isn't set up strong, the others will fail to take their place as well.  Ever since Liam was born, I have longed for the kind of relationship with God I had before he was born. And please do not misinterpret, my struggle was in finding God again, amidst the struggles we faced...against a new canvas of life.  My relationship with Him looks much different now...and a lot of times I struggle with that.

I did get a chance to start reading a wonderful book by one of my favorite authors, Max Lucado, "In the Eye of the Storm." I can already feel my heart softening and my ears tuning in to what the Lord is speaking to me right now in my life.  It has given me perspective and courage to know I don't walk alone in this - Jesus has been through it all - to death and back, and is alive to help us through our journey.  I leave now with a passage from his book, that has really got me thinking...

"There is a window in your heart through which you can see God.  Once upon a time that window was clear.  Your view of God was crisp.  You could see God as vividly as you could see a gentle valley or hillside.  The glass clean, the pane unbroken.

You knew God.  You knew how he worked.  You knew what he wanted you to do.  No surprises.  Nothing unexpected.  You knew that God had a will, and you continually discovered what it was.

Then suddenly, the window cracked.  A pebble broke the window.  A pebble of pain....

Whatever the pebble's form, the result was the same - a shattered window...And suddenly God was not so easy to see.  The view that had been so crisp had changed.  You turned to see God, and his figure was distorted.  It was hard to see Him through the pain.  It was hard to see Him through the fragments of hurt...

The moment the pebble struck, the glass became a reference point for you.  From then on, there was life before the pain and life after the pain.  Before your pain, the view was clear; God seemed so near.  After your pain, well, He was harder to see.  He seemed a bit distant...harder to perceive.  Your pain distorted the view - not eclipsed it, but distorted it.

We look for God, but cannot find him.  Fragmented glass hinders our vision.  He is enlarged in this piece, but reduced through that one....And now you aren't quite sure what you see."

In the Eye of the Storm, Max Lucado

10.20.10 - Hopefully going home today!

Liam is doing great.  They took him off oxygen at 11:00 pm last night and he's been holding his own since.  As long as his sats stay above 90, they are good with that.  He is still tolerating his feeds really well too.  If things stay the same, they are hoping we can go home later today - YAY!

This was the final straw in our decision to pull Liam out of daycare.  Dustin and I had been considering it for a few weeks, but I think this incident made our decision for us.  It is just not worth the risk, especially for the upcoming winter ahead.

Not sure about future plans right now, but we'll figure it out like we always do.  We know the Lord has our back, so we feel at peace about His plans working out. 

Will hopefully post again later - FROM HOME!

Update

We are still here at the hospital, but hopeful to go home today or tomorrow. The blood cultures have not shown any positive results and the virus tests all came back negative as well. His white blood cell count was high, so with that information they are treating him as if he has aspiration pneumonia with viral infection.

His O2 sats are now more mid 90's, but he is still dropping into high 80's at night....Other than that Liam has been eating great, alert, happy and playful. Thank goodness he is not feeling too sick. I was worried the feeding might keep us here, but he is tolerating his feeds great and he even ate an additional jar of sweet potatoes last night!

I've also had some time here to meet with a nutritionist and get a game plan going with fortifying his feeds to 30 calorie, but eventually switching him to either Peptamen Jr or Vital Jr for his formula. These are both formulas for tube feeders that are already concentrated to 30 cal. Any tube feeding moms reading this that have any advice on these two formulas, I would love some feedback!

Well keep posted about an ETA back to home! Thanks for everyones thoughts and prayers!!

At Childrens Hospital with Liam...

Our happy healthy weekend came to an end with Liam having a sudden onset of wheezing last night. It was downhill from there and when we got to the ER he was satting low 80s and dusky/blue...they gave him a breathing treatment which helped tremendously, but he is on and off oxygen satting low 90s. They admitted us to wait for blood cultures and tests for rsv and flu to come back. Lung xray showed viral infection but not pneumonia, thank God. So here we wait. Liam is finally getting a little rest right now...and me too for that matter.

He went from happy, playful and totally fine to sick with whatever this is within a matter of hours...scary. Will keep updating as we know what were dealing with!

10.16.10 - Where has this child been hiding?

 
We have had one of the best weeks since I can remember...Liam has been so happy, energetic, HUNGRY and just so much fun! It is SO nice to have a week like this....they have become very few and far between, and we were due for a weekend of not nursing a fever or cleaning up after tummy viruses...YAY!

So for tonight's post, I'm going to post a bunch of pictures. We had a great Saturday today, just hanging out and playing all day. In fact, I feel bad because Liam scooted around so much playing today, he has carpet burn on his legs! He has got to learn to crawl soon =) And to update on the feeding, Liam has actually seemed really hungry today. He has eaten SO well, where has this child been hiding?? We are working on upping his Alimentum calories to 30 cal/oz, currently we are at 28 and doing good so far! It's expensive, but at this point I'll do anything to get him to gain some weight! On to the pictures...
 

Dustin was home with Liam a few hours this morning while I was at work...they had a lot of fun building and then tearing down!

And they all fall.....

......down!!!

Our Roxy - had to let you all know how soon she will become Liam's favorite toy!  He already goes after her at every opportunity!

Spaghetti time!  He liked it - YAY!!

Checking it out....

Hmmm.....

If anything, it's fun to play with!

Taking a moment....

Yummo!!

And this is what was waiting for me when I got home....Do I have the best guys or what!?

10.12.10 - Well check update

Liam had his 1 year well check appointment yesterday.  Let me first say that I was not looking forward to this appointment.  Don't get me wrong, I am SO excited we have come so far and my little man is ONE! But I was nervous.  I have posted before about Liam's eating issues and how eating has become quite stressful for him and us for the past few months, even his tube feedings have been tricky to manage.  Regression is all I seem to be seeing with him.  And my suspicion that he was not getting enough calories everyday was confirmed with a weight check.  Liam weighed in at 19 lbs. 5 oz.  which is down almost a 1/2 a pound from his 9 month visit.

I had been noticing the scale trickling down here and there, every time we go for a sick visit (which lately has been at least once every couple weeks).  And, as you parents know, for sick visits you don't have to get them down to the diaper to weigh.  So, with clothes and helmet, he was pushing just over 20 lbs. each time.  I just never thought we'd be dealing with this for so long....and I know other parents deal with this everyday too.  So stressful sometimes.  I did have our pediatrician give us a referral to another feeding therapy program for a second opinion / consultation.  I feel like we could be more aggressive in our approach and to have someone help coordinate the nutrition side and therapy side together would be great.  And now that I've navigated this route times over, I am going to be more aggressive to seek and find him the therapy he needs.

Liam overall though is doing quite well beyond the feeding.  He is slightly delayed in his physical activity, but we are continuing to do therapy once a week to help get him some muscles!  He is starting to scoot on his bottom EVERYWHERE!  It is so cute and he can really get around pretty quick.  We are hoping this eases into crawling soon.

So here we are.  Liam's next cardiology appointment is at the end of the month, and if he doesn't pack on the pounds in the meantime, I'm going to be even more nervous for that visit....you heart moms know the weight thing with our babies....praying for a big gain!

10.9.10 - Time to get down to business!

 
It has been a bittersweet week for us.  After celebrating Liam's 1st birthday, this past week has been a tough one for the CHD community.  I have learned of the passing of 12 CHD babies this past week around the country.  12 too many.  It really got me thinking that our mission for TEAM LIAM stands at a crucial time.  I know I haven't been so diligent in posting about TEAM LIAM progress and updates, but now it's time to get down to business.  We cannot continue to let CHD research and awareness lay by the wayside and continue to be severely underfunded....my child's life and countless other's are in the hands of the their CHD's.  We need your help...

Many of you know about TEAM LIAM, but many newcomers may not.  Dustin and I formed a running team to help raise our goal of $10,000 for The Children's Heart Foundation.  We will be participating in the Dallas White Rock Marathon on December 5, sporting TEAM LIAM jerseys to spread awareness and run for Liam's cause.  Since it's inception a few months ago, support has been amazing.  We have already surpassed the halfway mark to reaching our goal, having raised over $5000!!  We would like to thank our friends and family for being an amazing support for us in this venture!  I know we can reach our goal!

There are 3 ways you can help TEAM LIAM reach it's goal:

1) Join TEAM LIAM and run with us to help raise money!  The Dallas White Rock Marathon has a full marathon, a half marathon and a relay team division.  We need runners for all categories.  To join, please visit our website at www.teamliam4chd.com and click on the link to the left "Run With Us!"  Fill out the online form and you will receive an email with details on how to get started.

2)  Donate online at our giving page at www.firstgiving.com/teamliam2010.  It is 100% secure and your donation is tax deductible - the money goes straight to the Children's Heart Foundation.  There is also information on that page if you wish to mail in a donation.

3)  Help us to rally corporate sponsors, by sending them our Corporate Sponsorship form for donation.  Visit www.teamliam4chd.com and click on the "Donate Now - Corporate Sponsors" link at the bottom of the page.  You can then print or email the PDF that explains how they can donate and be an official sponsor, appearing on our t-shirts and jerseys.

We are also planning a couple other fundraising events.  Texas Roadhouse restaurant, in our hometown, has graciously offered to host an evening to donate 10% of food purchase proceeds directly to the Children's Heart Foundation for TEAM LIAM!  We are really excited about this opportunity - the date is still being set, but will be soon!

We are also planning an evening event with a silent auction and other activities in mid-November.  If you know of any businesses or individuals wishing to donate items for the auction or event, please send me an email with their information.

And last but not least, I'm asking for prayers.  Prayers for our family, on our continued journey with Liam, prayers for families awaiting the arrival of their CHD child, prayers for those families enduring surgeries, and prayers for the special families who have loved and lost a child.  Prayers for the entire CHD community.  With your help I know we can make a difference.  Tell someone about CHD's - help spread the message of TEAM LIAM and it's mission.  Help to create a better life for CHD families everywhere.

And I'll end this post with some pictures from Liam's 1st birthday!  Unfortunately, we found out the next day, he was coming down with strep again at his party (as he sat in a corner of the room on my dad's lap the entire time)...poor thing.  After spending a week at home this past week and being put on another antibiotic, he is slowly returning to his old self again...thank goodness!

Liam in his speedy 1st shirt!  Thank you Mimi for making my cool t-shirt!!

Liam and Grandpa...he doesn't feel well!

Liam with Mimi...no smiles....poor baby!

Party guests enjoying some arts and crafts.  About to play Pin-the-heart on Sponge Bob!

No cupcakes for Liam =(  But I did find this cute Leap Frog light-up cake - The candles go out when you blow on it!

Happy birthday my love!!

****************************************************************************

I also wanted to share information for those of you who would like to offer support for the two families I posted about this week, who both lost their sons in the fight against CHD's.  

You can visit their pages below to find information on how to give.  

Thank you for thinking of them and keeping them in your prayers.

Baby Ewan Memorium Page

Baby Joshua

10.6.10 - No words....

More sad news today.  Baby Joshua passed away this morning, suffering from cardiac arrest.  This is another amazing heart family whom I've been keeping up with, and my heart is breaking for them...

Please keep Baby Ewan's family and Baby Joshua's family in your prayers...I cannot even begin to imagine what they are dealing with right now.  These two heart mommas have forever changed me...their courage and their strength....beyond measure. 

We HAVE to act and do something to stop this...We must fight for those who cannot.  This battle is not over....

10.4.10 - On the eve of mercy...

I have so many things I want to say in this post....I just learned a precious CHD warrior, Baby Ewan, lost his fight and went to be with Jesus.  I am deeply saddened and grieving for this sweet family...it is just too close to home for me.  On the eve of our "one year ago today" day, I find this news hard to take.  The Lord has been speaking to me the last few days about mercy...that word keeps pouring over in my head....mercy, Lord, mercy.  It is not sitting well with me yet, the Lord has a lot more speaking to do.  Why is mercy so quick to come to some, yet so hard to find for others?  Why is it so....UNFAIR?  I know I need to dig deeper, get into His word for this one....He is drawing me near again. 

There are so many people surrounding me that are walking journeys I could never imagine being on...the pain, the hurt, sadness and grief are unending for them....my heart breaks over and over with them, wondering, God where is your mercy?  I am hopeful and praying that the Lord is speaking to these people in ways only He could, so that they will hear Him and find peace.

The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
Lamentations 3:22-23

I remember God's mercies for us...coming new each morning, just like He said...and on our journey with Liam, I have clung to that scripture more so than any other.  So why am I questioning it now?  I think because I'm longing to see those same mercies in other journeys...It seems so easy to me....Look, Lord, what you did in our journey is what THEY need!  Can't you see??   Do it again Lord!  But yet, silence falls and those mercies I know and recognize are no where to be found....but child, He says to me, hear what I said again....MY mercies are NEW every morning....yes, Lord.

One year ago today was the eve of Liam's first heart surgery, a mere 5 days after his birth.  I remember clearly the night before, lingering at Liam's bedside, not wanting to go home to rest, in fear I may not see him the next night....yet my arms were aching and longing for the morning when they promised me I could hold him for the first time....hoping and praying it wouldn't also be my last. 

Surgery day came too quickly.  Dustin and I made our way back down to the hospital at 4:30 am, the morning of October 5, 2009.   We wanted to arrive early to have a good couple hours to cuddle, hold and pray over Liam before he went in.  That was a sweet, precious time and memory I will always cherish....the quiet of the hospital, the soft dark of the room letting us escape the reality we had yet to face, the three loves of my life, all together in one room, Dustin, Liam and my sweet Jesus.  Lord, please have mercy on us...show us your faithfulness again...bring him back to us.

And after a few hours and a lot of prayers, the Lord brought Liam back to us, with a temporary fix to his sweet little heart.  With a few small bumps along the way, we were discharged from the hospital 18 days later, 10/23/2009 - my original due date. 

We have never stopped knowing and believing that Liam is our miracle.   Each and everyday cherished, for we know what could have been.  We have been blessed beyond measure and deeply humbled and honored to be walking this road with Him, our Creator, our Father, our Savior.

Great is thy faithfulness....