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....

9.30.10 - Happy Birthday Liam!!

On The Day I Had You
By Tara Johnson

On the day I had you
Only God knew
The path our lives would take that day
Trying to make everything ok

They told us that your heart was sick
And surgery would be the only fix
It seemed that moment could have been a dream
Because to me, you were the most perfect gift I’d ever seen
Away you went, your sweet little face,
The one I longed for, left alone in that place
The first night without you safe in my arms,
Left us wondering, How do we go on?
But then the Lord whispered soft to my heart,
He is mine, sweet child, you must let go of that part.

Prayer after prayer, we sat and we cried
Thinking of how we were going to be tried.
Hopes and dreams we had were all gone,
Replaced by the worry and fear brought by the dawn.
Over and over, we gave you to Him
Your will be done, Lord, your hands he’s in.
Family gathered round, we waited for the news,
Of how God, through surgeon’s hands, worked a miracle in you.
Joy overflowed, and with humble hearts we praised
Up to our faithful, loving Lord, we gazed.
Amazing grace, oh how sweet it’s sound,
On the day I had you, it was surely found.

Looking back, a tough road indeed,
But we walked the path with Jesus, we chose to take His lead.
Now you’re turning one year old, and I hope you’ll see
Jesus was there for you then and always will be.
We love you little Liam, you’re the greatest gift,
Happy birthday sweet boy, praises we shall lift!

You can read Liam's full birth story by clicking here.

We give thanks and praise for each and every one of YOU who have been at our side through this journey.  May God grant peace and blessings to you all.  We are in awe at how the Lord brought us to this day, and are looking forward to walking with Him the rest of the way.

Here is a glimpse back at Liam's first year!

9.26.10 - Countdown begins! 23, 24, 25 and 26....

Tonight's post is going to be short and simple....I have GOT to finish Liam's 1 year announcements/invites tonight to get them in the mail tomorrow!  There are not enough hours in the day!

I think we left off at Thursday...We went to the Police Department for our outing.  I was a little disappointed, as we were not greeted by any cops, which I thought we would be...so, hence no pictures.  Boo....Oh well.  It was really just to do a nice something for them (took them a cheesecake), and obviously, they must have been busy that night =)  Did I tell you all that Dustin is taking the Citizen's Police Academy?  I am so proud of him for getting involved in our community.  We have also learned that we live in one of the safest communities around here....which makes me feel at ease!

Friday night was pretty fun.  My mom came and spent the night since we were hosting a baby shower for my sister-in-law (a post is to come on them soon....she is too cute, pregnant with TWIN boys!! We are SUPER excited!) We went to this old restaurant literally 1 mile from our house called Larry's Family Restaurant.  I had always begged Dustin that we should try it out some time, as it is always packed.  And boy it was yummy!  They had old fashioned steak fingers, which are hard to come by around here anymore....and they were just like the old DQ ones, maybe even better.  And they even have a drive-thru....I think we found a new favorite place!  Liam ate SO good there too...he had apples and chicken, and ate the whole jar, plus a little bit out of another jar...WOW!  Wish I could get him to eat like that at home!

Yesterday, while we had the shower at our house, Dustin took Liam to see his aunt and uncle and cousins.  Liam always has so much fun with them!  My sister-in-law Amber, took the picture at the beginning of my post and the one below...I just thought they were adorable! 

He really looks excited about eating here...too bad it didn't last.  Dustin told me he only ate about 1/2 jar....long sigh....I know he'll get there, but it really feels like we are backtracking...a LOT.  But, you never rush a heart baby, seems to be a trend among them, that they do things in their OWN time....another lesson in patience....gotta love it!

Today was church and then to my parents house to celebrate my dads birthday...which Liam happens to share....Oh, the memories of a year ago are already flooding back.  It was this exact weekend, one year ago today that I had my last baby shower.  Little did I know Liam would be born 22 days before his due date...and on my dad's birthday.  But that post is for Thursday!  Gotta wait til then - Let the countdown begin!

****Prayers needed for a couple of sweet and precious heart babies: Baby Joshua and Baby Ewan are both having a tough time right now and fighting for their life.  Please take a moment to pray for these little CHD warriors and their sweet families.****

9.22.10 - Day 20, 21 and 22: Therapy and Firemen

The future of Team Liam!

We laid low the first part of the week, as we received some discouraging findings Monday evening.  Monday, our new feeding therapist came to do her evaluation of Liam.  More on that in a minute.  Needless to say, Liam was exhausted after the appointment was over at 6:30, so we decided we'd best tube feed him and put him to bed.  Tuesday was a typical day with Grandpa at my parents house.  Dustin and I got in a much needed mini-date night at home before going to pick him up...it was nice.  I miss that.

And then today, we doubled up on outings!  First it was Sushi time with my good friend Jo and her son.  We dined at our favorite Sushi house, a normal meeting place for us.  It was fun - Liam always eats better when we are out (I think he does very well being distracted), so it was nice to see him eat a full jar of baby food for once.  I haven't seen him do that in awhile. Although, I am not doing a good job at sharing our Team Liam fundraiser, as I keep leaving behind the information when I go places...Dustin is a much better advocate!

After sushi, I cam home and whipped up some Sopapilla cheesecake (mistakenly a "fat free" version, which I had to apologize for not being the real thing!).  We went and visited the firemen at our local Fire Station.  Since we live on firetruck alley (the main route the trucks use to get to the freeway that is near our home), I know that they are some of the most hardworking men I know.  So we went to drop off some dessert and say thanks for all they do for our community.  Plus, we got a few good pics in front of the big red truck as well. 

So let me touch back to Monday night.  The feeding therapist evaluation of where Liam is at, as an oral eater, is a much more cautious approach than what we have been given since the swallow study was done a month ago.  Dustin and I really haven't had a lot of direction up to this point, as to how to progress his feedings and oral liquid feedings, because we have been trying this whole time to secure a separate therapist for just feeding.  His OT has mainly been doing the physical therapy part since by the time she gets down with that, Liam is exhausted and wants nothing to do with feedings.  So that said, we had been trying various bottles with water or juice, and at first Liam really seemed to be catching on and liking the bottles.  He would always cough some if he got to much or drank too fast, but we never worried because he always seemed to clear it and we never had a scary "aspiration" moment...or so we thought.  But lately he has wanted nothing to do with liquids.  We also started feeding him stage 3 foods and the baby yogurt puffs a few weeks ago, and again, he seemed to really like them and does fine with the texture.  But lately, he has not been interested in these foods either, except for the yogurt puffs, which we have to closely watch him eat to make sure he can handle them.

On to the therapy session.  She asked me all the background info and developmental questions....Is he babbling, is he sitting up well, crawling, walking, etc.....Then she watched me do an oral feeding with Liam.  He initially seemed hungry and excited at the yogurt I was going to feed him.  He ate few bites really well, then started to be a little protective of his mouth with his hands (normal for him).  The therapist then wanted to see how he was doing on liquids, so I got a Podee bottle with juice, but Liam was not having it.  She then suggested that I feed him liquid via spoon, which I had never done before.  So I did and immediately he started coughing after the first spoonful.  Then the second, he "definitely aspirated" and had a deep coughing spell, which made him very upset.  Not good....

Basically, we received the news I had been suspecting, that he is still aspirating liquids and is at about a 6-9 month feeding level.  She basically, in a very nice and supportive way, told me that everything we had been trying with Liam, was not appropriate for him based on where he is at right now.  Making steps forward suddenly went to taking big steps backwards.  We have been praying for Liam to be a complete "oral" eater since birth...I am discouraged, I'm not gonna lie.  But I also feel extreme guilt....I feel like I took risks with my sons care I should not have.  I am upset because I didn't know what I was doing, didn't ask enough questions, seek enough advice....when will this stop?  I am tired of navigating this without a map, even though one doesn't exist!  Monday, was not a good night for us.

The feeding regime for now is much simpler than before.  Tube feedings 4 times daily, stage 2 baby foods, and no liquids by mouth unless thickened.  The therapist is going to start doing Vital-Stim therapy twice a week, which I am anxious to get started.  I have heard really good things about it, and it has been something the therapist have been talking about doing with him since before his surgery.  We are praying that we can start moving forward again...