Saturday, January 29, 2011

1.29.10 - 30 days...Amazing

30 days ago Liam looked like this....

Liam's 3rd surgery - 12.29.10
 And today, he looks like THIS!

AMAZING!!  Praise to God!

P.S.  It's another beautiful day here in Texas...75 and sunny right now...we are LOVING it!  But, we are expected snow Tuesday...guess it will be short lived! 

Friday, January 28, 2011

1.28.11 - Progress and Praise

Well this week has been a busy one! And a beautiful one here in Texas, I might add. I am just waiting for Liam to wake up from his nap so we can go play in the park, since it is already 70 degrees outside with lots of sunshine! Love me days like this that sneak up on you in the dead set of winter!

Liam is doing great...GREAT. I think my worries even just a week ago have been trumped by all his progress. His swallowing has improved, as he is able to tolerate more and more solid food options, and his tube feedings are going great - no vomit or coughing/gagging episodes in over a week...SO blessed for that. We had our monthly Synagis shot today and while at the pulmonologist, we had a consultation about his upper airway / reflux issues he had been having. He did say it wouldn't hurt to get a scope done to get things checked out if we were concerned. Since Liam is consistently improving day to day, I am hoping my concerns with his airway were just a little premature (due to the surgery and him just being weak). Dustin and I have agreed to take a wait-and-see approach before we decide to do more testing or visit the ENT. Not that I need to explain why we are choosing to wait, but it is mainly because Liam would need to be under anesthesia for a scope to be performed...we really don't want to take more risk than necessary right now, and since he is improving, we are choosing to wait it out.

Yesterday, we had ECI come out to do an evaluation. I am still undecided if we will go with them for services, but it was great to see where he is at developmentally, socially, cognitively, physically, etc. all in the same appointment. It was a great visit, and Liam is only slightly behind in his social (which makes sense, since we never go anywhere!) and his gross/fine motor skills, which we knew about. He actually tested with NO delay cognitively, as they kept remarking how much of a thinker he was! That made me feel good...I always thought he was pretty smart, but I'm also biased in all my opinions of him!! In summary, it was reassuring to know that he is on the right track and making pretty astounding progress given his past medical history.

Our Speech Therapist also started the Vital Stim therapy this week for his swallowing. He is doing GREAT with it. I was a little worried, as it has electrical pulse nodes that are placed on the neck...but Liam didn't really seem to mind it much. She even worked the strength up to 10 pretty quickly, which is a normal therapy range for his age. I am so glad he is tolerating it so well. The plan is to have his OT and ST both come during the week to do the Vital Stim so he can have 2 sessions a week. Hopefully in another couple months we can repeat the swallow study with a passing grade!

Liam is SO SO SO close to crawling...I have caught him a couple times taking a "shuffle" with his crawl stance, but then his little arms get tired and he ends up face planting himself into the carpet. He is finally starting to try to pull up on things, stand again supported, and even take some supported steps. He had yet to do this since his surgery, so this was encouraging that hopefully his chest is healing and feeling better too. And I am counting down the days where we can finally pick him up under the arms! We have two more weeks! It's funny now because when he wants up, he'll scoot over to me, say "Bop bop" (his version of "up) reach for me, then turn himself backwards to me so I can scoop him up under his bottom! HE even knows what to do to cute!

All in all our week has been busy, but wonderful to say the least. We have also seen God answer some big prayers and work some pretty big miracles in our family and circumstances these past few weeks, and He never ceases to gain our utmost adoration and praise...He continues to bring joy, peace and fruit into our lives with His amazing timing and glory. We owe everything to him, for it is ALL His and for His glory alone. Just had to sing my praises to my beloved King!! Hope everyone has a BLESSED weekend!

I will exalt you, my God the King;
I will praise your name for ever and ever.
Every day I will praise you
and extol your name for ever and ever.
Great is the Lord and most worthy of praise;
his greatness no one can fathom.
One generation will commend your works to another;
they will tell of your mighty acts.
They will speak of the glorious splendor of your majesty,
and I will meditate on your wonderful works.
They will tell of the power of your awesome works,
and I will proclaim your great deeds.
They will celebrate your abundant goodness
and joyfully sing of your righteousness.
The Lord is gracious and compassionate,
slow to anger and rich in love.
The Lord is good to all;
he has compassion on all he has made.
All you have made will praise you, O Lord;
your saints will extol you.
They will tell of the glory of your kingdom
and speak of your might,
so that all men may know of your mighty acts
and the glorious splendor of your kingdom.
Your kingdom is an everlasting kingdom,
and your dominion endures through all generations.
The Lord is faithful to all his promises
and loving toward all he has made.
The Lord upholds all those who fall
and lifts up all who are bowed down.
The eyes of all look to you,
and you give them their food at the proper time.
You open your hand
and satisfy the desires of every living thing.
The Lord is righteous in all his ways
and loving toward all he has made.
The Lord is near to all who call on him,
to all who call on him in truth.
He fulfills the desires of those who fear him;
he hears their cry and saves them.
The Lord watches over all who love him,
but all the wicked he will destroy.
My mouth will speak in praise of the Lord.
Let every creature praise his holy name
for ever and ever.
Psalm 145

Monday, January 24, 2011

1.24.11 - A Scootin' and a Stompin'!

Nothing new to report on our home front. Everyone is doing well. Thought I'd post some cute videos we caught of Liam doing his favorite things! Enjoy!

Tuesday, January 18, 2011

1.18.11 - A Feeding Anniversary

Before blogging came into my world, I thought I was the only one who tracked "anniversaries" of certain events; mostly just in my head, these moments in time quickly became reference points for me.  It amazed me, as a heart mom, just how many "anniversaries" we have...some bigger than others, but I frequently refer to them to piece together the timeline of tests, procedures and surgeries that would become our life.  I just realized today, that it is an anniversary day.  And it seems appropriate that this anniversary would mark the date our little one got the long awaited for g-tube. 

One year ago today Liam had a gastrostomy tube placed for feeding because he was aspirating all liquid consistencies.  He was just shy of being 4 months old and we had previously been using a NG-Tube for nourishment up until that point.  It always seems every time we get on the other side of a surgery, the tube and feeding issues become a bit challenging and somewhat of an obstacle.   We are again on total tube feedings for the time being....But we are praying for complete healing in the area of his airway and feeding issues.  We know God has a plan and we are trusting for His timing and healing to be delivered.

I've got some fun pictures I want to share....oh so cute, and I am having OH so much FUN staying at home!  It has been truly a blessing on all fronts.  Liam is so chatty now and is saying all sorts of words: Go, Sponge Bob, kitty, down, up, hi, bye, the list goes on and on!  He is just so is so nice he can communicate verbally some now! It is also great to wake up and spend all day with if only Dustin could stay home too... =)

New Sponge Bob hat from Mimi...Love it!

She got it to fit over his helmet...but it makes a great mask too!

Here's to you..kid!

Friday, January 14, 2011

1.14.11 - What a week...

Well this week has been challenging, to say the least.  We did get a good report from the cardiologist appointment today - it went very well and Liam's conduit looks great on the echo.  His gradient pressure is now 20, which is a "very normal" range for Liam's heart right now.  We go back in a month to be closely monitored for any issues that may come up, given that the last go around was not successful.  I found this a HUGE relief that we don't have to wait months to see if this conduit is holding up!

Now for the not-so-great news.  Liam failed his swallow study on every consistency of liquids...even honey and a half (which I thought would be Stage 2 consistency).  He did pass well on the solids, Stage 2 and up and also the meltable crunchies that he loves so basically we are back to where we were at before his surgery.  We got cleared from cardiology to start the Vital Stim, which has been on my "Liam to-do list" for quite some time if yall remember =)  I'm calling our ST next week and to have her start coming back out ASAP to start on feeding therapy again.

The other not good news is that Liam had another choking episode today.  I am 99% sure it is due to reflux, we just don't know what is causing it.  Clearly something has changed with him (either airway wise or allergies, something) from prior to his surgery.  He has never had choking or intermittent rough coughing spells before.  I have POURED over research on the Internet and am getting very mixed thoughts and too many things "it could be" (and on top of that, I am a hypochondriac myself, so that doesn't make my self-diagnosing him any better!).  Our cardiologist didn't really have an answer for us on the issue, other than it's only been a couple weeks since his surgery and his body may not be back up to par yet.  I have a call into our pulmonologist to find out what more we can do to help him when he is having an episode and what the next step is to figure out what is going on, given the swallow study results.  I'm thinking a trip to the ENT will be next on the list...I am anxious to get this figured out to say the least. 

Not much planned for the weekend.  Given we still have a few months before the RSV/flu/cold season is over, I'm guessing our weekends will be pretty boring =)  But I don't mind one bit.  One of my good friends was asking me when we could get together with the kids and my reply was...May?? We both just laughed. 

Wednesday, January 12, 2011

1.12.11 - 2 down...2 to go!

So Liam ended up having 4 appointments this week.  Yesterday was his 15 month well check and he did great.  His weight is up to 21.9 lbs and he is 30 3/4 inches tall.  The appointment was a little disappointing for me though.  I (as any mom does) was expecting to have all the developmental questions, and being the proud mother I am was fully prepared for them "How many words does he have now" "Is he walking, cruising, etc"...But our pedi didn't really ask too much about it...Hmm.  We spent a LOT (too much in my opinion) discussing what had transpired regarding his heart surgery/issues over the past 3 months...which is fine, but I just felt like his developmental status got pushed to the back burner and still remains in question...and that's basically what I need the pedi keep us on track.  And yes, I probably should have spoken up, but we still had 2 shots coming, and Liam's attention span was beginning to waver...Does anyone else experience this with their pedi?  I guess it bothers me because I feel like all I do when I go is re-hash his heart history for the past few months and that's about as far as we get.  Maybe time to find another practice...Ok, sorry about the vent there!

On a good note, Liam was so happy and chatty at his appointment...I was so hoping and very thankful he remains calm and happy during doctors appointments!  I have frequently read that heart kids (toddlers especially) can develop quite an anxiety and get very scared during visits after so many hospital visits...which is clearly understandable.  I was waiting for that day to come for us, but so far we are blessed that we have not had this experience yet with Liam (but we'll see how the echo goes on Friday!).  Maybe because this is the only exposure he gets to the outside least during the winter months!

He had his helmet adjustment appointment today which was a quick 15 minutes in and out.  They expect him to have to wear it another 2 months or so.  Since growth usually slows down about this age, it may take a little longer to see the results they are looking for.  His hair is growing in more, so that helps his head look MUCH better!

The long awaited swallow study is scheduled for tomorrow morning.  Liam has had another couple of choking which almost had me dialing 911 because it was so scary.  I was so afraid he wasn't going to be able to cough and clear whatever was going on in his lungs, that I had phone in hand (and actually dialed 911, but my phone was on another screen, so it didn't connect...) but he FINALLY calmed down enough to take a breath or two and cough a few times hard enough to get it out.  I am glad we still have the pulse oximeter handy...the numbers were not great (mid 80's) but not as scary as what I thought he looked like, and eventually came back up to 95.  I am afraid it is's really all it can be.  I have fed him a few bites of stage 2 applesauce and pears (per direction of our ST), but the episodes are not occurring around this at all (like we thought it was when it initially started happening).  Usually he will be playing on the floor (about 30 min to an hour after a tube feeding) and then he will start sounding congested all of a sudden.  Congestion, coughing gets worse and eventually leads to the choking episodes.  So strange and SO scary. We upped his Prevacid today (per pedi instructions) to 3 times a day to see if it will help, but one of his spells happened this afternoon so we shall see....UGH!  Hopefully tomorrow will reveal some much needed answers!

And of course, Friday is our follow-up with the cardiologist.  I am a little apprehensive, to say the least.  But am glad we are going so I can voice our concerns about his airway/swallowing issues and see what his thoughts are.  As far as the outside goes, Liam's scars are healing wonderfully.  Just want to be sure everything is A-OK on the inside =)  Please pray for a good follow-up!

Sunday, January 9, 2011

1.9.11 - SNOW Day!

We had a SNOW day Texas...crazy I know!  I guess the entire south is in for it today and tomorrow though!  We had a cozy day inside just the family.  My mom stayed over last night (so hubby and I could get in a date night) and was here until it started snowing pretty heavily this morning.  We made sopapilla cheesecake and played with Liam all morning long.  I made some gourmet homemade hot chocolate earlier this afternoon, and it was SO yummy!  It's been a wonderful day!

We took Liam out in the snow for a moment...he was loving it for a little while, watching me through snowballs at Dustin's truck.  But then he felt the snow himself, and I think it was a little too cold for his liking...then he cried until we went time outside about 4 minutes...Oh well, at least we snapped few photos for the record!

I just realized we have a busy week with appointments, which stinks because it's going to be SO cold here all week.  We have Liam's 15 month well check on Tuesday, his helmet adjustment on Wednesday and Cardiology on Friday.  We may also have the swallow study thrown into the mix of things too...Whew!  Liam seems to be better with his breathing and his coughing episodes have lightened up.  We are really praying his swallowing issues are a temporary deal and we can continue where we left off last year with getting a game plan to start weaning him off his tube! 

Hope everyone stays warm this week! 

Thursday, January 6, 2011

1.6.11 - My love / hate relationship...

I enjoy looking back through my blog, seeing where we were at one year ago.  It seems appropriate that last year it seems the topic of discussion was very similar to what today's consensus was on Liam's recovery...the tube.

Oh, my love/hate relationship with Liam's g-tube.  I am SO thankful everyday that he has it, but at the same time, I really REALLY want Liam to just be able to be normal is the area of be able to feed him what we are eating, have him enjoy mealtime, to see his face light up when he eats his first piece of cake or a cookie...It's been a long road with feeding, and after my impromptu appointment with our pulmonologist today, we are temporarily back to square one. 

The doctors recommendation reinforced our suspicions and our plan of action.  So, Liam is NPO (nothing per oral) and on total tube feeds again for the next couple weeks. As much as I didn't like to hear this, I just want him to be safe, especially given he already has aspiration risks due to his paralyzed vocal cord.  Given some recent choking episodes after eating his usually-tolerated-fine foods, we suspected something in his airway has changed or has not healed from surgery yet.  The pulmonologist said its very common for children to endure some temporary dysfunction/weakening of the larnyx after surgery in the chest, which could definitely be causing his symptoms.  However, the good news is that Liam's lungs were clear, oxygen levels were in the normal range, and no fever to speak of.  We are to have another swallow study done between 10-15 days from now (which is not a huge window, given how long it usually takes to schedule one!) so we do not go too long without oral feedings which might cause other feeding issues...UGH!  If the swallow study is significantly different that the one he had back in August, then we will have a scope done to see what is causing the problem.

I must say, the tube feedings are getting a little trickier now that Liam is older and wiser! Ha!  He definitely knows he is not supposed to play with his tube, and of course he does a LOT because he knows he shouldn't.  Also, he has to be sitting quietly for an hour for each feeding or he will make himself sick...The nap nanny has been our best friend for so long for this reason, but Liam is quickly growing out of it's restraints, and doesn't quite have the attention span to sit for an hour +...3 times a day (thankfully we feed him twice while he is sleeping, 3 times if he naps during one in the daytime!).  I trialed feeding him sitting up in the wagon today, and it seemed to work, I just need to get the pump mobile so hopefully we can go for some walks.

On the homefront, we are all doing well adjusting to the new routine.  I actually cooked my first home cooked meal tonight since I can remember!  I really miss having time to be a housewife =)  I am thoroughly enjoying all of my new responsibilities!  I am also amazed at what a little chatter box we have on our hands...he is picking up on words so fast...this morning we were watching Mickey Mouse Clubhouse in bed, and Liam blurted out (on cue with the show) "Oh toodles!"  I shot up from my pillow and looked at him, like where did THAT come from??  He just smiled and giggled.  I couldn't get him to say it again, but maybe tomorrow morning...

Tuesday, January 4, 2011

1.4.11 - So glad we are home...

Today starts day 2 of my official move to stay-at-home-momma.  It is nice to be off, especially to care for Liam during this time.  Our days are a little more involved than our daily routine before, but I'm slowly working back to it.  It is definitely an adjustment.  We have never had Liam home so soon after a surgery, so it is a little daunting making sure he is recovering like he should. 

Liam is doing well.  He is still having some congestion with coughing and gagging is different from last the last time.  We are having some trouble feeding him solids too, as he is frequently coughing and gagging during eating, and then only eats a few bites before refusing.  We were pending another swallow study before we found out about the surgery, so I don't think I'm gonna push oral feedings right now.  I am trying not to get discouraged given that it is so soon in recovery to really explain what is going on.  I thank God everyday he has a g-tube.  At least he is still getting his nourishment and we can keep him well-hydrated.  So right now we are on a small volume formula feeding every 3 hours during the day, with juice feeds in between to keep his fluids up.  It sometimes gets exhausting to keep up with, but slow and steady wins with him, so I'll do what it takes!

His demeanor is great - I can not believe how happy and ACTIVE he is given it hasn't even been a whole week yet....I'm having a hard time getting him to rest and take naps!  The only thing he is doing out of the norm is itching his scars like crazy...I called the surgeons office to make sure this was normal and to see what they recommend we do about it.  Benadryl was suggested and seems to take the edge off for a little while.  Distractions work the best, so I have been giving non-stop wagon rides around the house as often as I can!  It is a good way to pick up the house, actually!

All in all, I feel the recovery is going as it should.  It's hard to not get ahead of the game sometimes because of how "good" he seems to feel.  We have an appointment on the 14th for a post-op follow-up with the cardiologist.  I think I may also schedule a visit to the pulmonologist for early next week too, just to have someone look at him.

Here are some pictures I took this morning on our 5th wagon ride around the house!

He scrunches his face now when he smiles for the camera!

Someone's getting a new tooth!

Roar!  My little ham!
Liam is FINALLY napping now, so I may go try to get in a nap while I can! 

Sunday, January 2, 2011


We are home! We had a great night last night. Whenever they moved us, they never turned Liams oxygen back mistake. His sats were just fine and the nurse just said to leave it off and see how he does. Of course he did great!

Liam had his echo done this morning (and fellow heart moms don't hate me, but he actually slept through it!) and everything looked good so the cardiologist on call let us go. Yay!

The only med he is on right now is lasix which will be only for the next few weeks.

Thank you all so much for your thoughts and prayers!

Saturday, January 1, 2011

1.1.11 - New year, new room and new pics!

We finally moved onto the regular pedi floor.  I guess they do move people over the holidays after all.  This was good because it's another step closer to going home!

Liam has literally slept the past 36 hours....All day and night yesterday and pretty much most of the day today.  I am so glad because I know he just needs his rest right now.  Liam is weaned down to .5 liters of oxygen and that's pretty much all we are waiting for to go home.  His sats are pretty good on it, between 92-95.  They just need him to stay above 90.  He does need an echo before we leave, so I'm pretty sure that won't be able to be scheduled until Monday it looks like we are here for the next couple nights.

Wagon ride to the pedi floor

Mr. Sewious again

Monkey just loves Liam...always at watch over him

And Liam loves monkey too!

Thank you all for your continued prayers!  We are in awe of God's provision and for his healing hand!