7.29.10 - Check up and catch up!

Liam's cardiologist appointment went well today. This was only the second time he did not have an echo done....I worried the last time like I am now, but Dr. V assured me his heart looked good on the EKG and sounded great. He did say they are monitoring his pressures, given that the right side artery is narrowed some...How they do that without an echo befundles me...but I did ask if there is anything that could quickly take a turn for the worst, and he said not really, just a matter of how long the valve lasts. He reassured me that Liam looked great and we should come back in 3 months. I told him it was going to be strange not coming to see him every month as we have done for the past 10...sometimes even twice a month. But that is one place I won't miss, so yay for Liam!

Liam's weight, I wouldn't quite say is an issue yet, but he didn't gain any weight from the last check up a month ago, weighing in at 19 lbs. 13 oz. I had a feeling this would be the case, as I can tell his growth by how tight or loose his diapers fit and how much room is left in his little outfits. I have not noticed much change for the past couple months, and he has been in size 3 diapers for as long as I can remember, and they aren't getting any smaller on him! Dr. V didn't seem to concerned with this, however it is something he wants to monitor, as it should be. We are also going to start him back on the good ole 24 calorie formula to help things along. We started tonight, but not with great results....Liam threw up all over after his dinnertime feeding...not sure if it was the formula or me getting him a little too excited and wiggly after eating - wooops! I forget sometimes how fragile his tummy is! I felt bad...but he was VERY happy afterwards, so maybe he was too full after all! Whatever the case, hopefully the 24 calorie stuff will transition smoothly into our feeding regime and only help things along and not be a hindrance.

Then there is playing catch up...I feel like in every part of my life, I am playing a catch up game. With Liam, it is his weight and development, work is busy for me right now with our annual audit around the corner, TEAM LIAM is moving fast but there is still SO much to do, and the medical bills...that's a whole post in itself. Whew...I don't like feeling or falling behind. I know I'll get caught up and get to "that place" again, but right now, I'm running on all 6 of my 4 cylinders and trying to get there as fast as I can! But in the midst of everything and all the busyness, I do have hope, hope that the Lord is taking care of things and working it out before I get there. He is my beacon that keeps me calm in my storms...or tornadoes...whatever it ends up being.

One last thing before I get to my TEAM LIAM update. I created a new page called Advocacy. I posted on there instructions on how you go about writing your Congressmen to voice your concern and support for CHD funding and research. A blogger friend of mine (Thanks Stef!) posted this to her blog and made it so easy...too easy to not contact them frequently in order to spread awareness and get involved and raise support for CHD research on the political front. Obama's healthcare reform is REAL and it is affecting the lives of millions of Americans, we cannot take it lightly...not going to voice my opinions here, but whatever you believe in, we need to be telling our Congressmen about it, so they can advocate for us - THAT'S THEIR JOB!! Anyways, check out the page and feel free to forward any replies you get back to me. Here is one of the replies I received from my State Representative, Congressman Michael Burgess, below:

Dear Mrs. Johnson:

Thank you for contacting me regarding policies which aid those with congenital heart defects. I appreciate hearing from you on this subject.

As you may know, a provision in the new health law dealt with congenital heart defects by creating a National Congenital Heart Disease Surveillance System at the Centers for Disease Control to promote the coordination and expansion of the National Heart Lung and Blood Institute's (NHLBI) congenital heart disease research.

Although this provision was included, it is now up to Congress to appropriate funding for the Surveillance system and the NHLBI. The NHLBI was funded at $3.096 billion in FY 2010 and President Obama requested that an increase of $91 million to $3.187 billion in his FY 2011 budget.

As an Obstetrician/Gynecologist with over 20 years of experience and having delivered over 3,000 babies, I understand how devastating a birth defect can be to a family. I believe that increased research and surveillance of this disease will provide those afflicted with the much needed support they deserve. I assure you that I will closely monitor the Labor, Health and Human Services, Education Appropriations Bill for the funding levels of these two programs will keep your thoughts in mind when I have the chance to vote.

Again, thank you for taking the time to contact me. I appreciate having the opportunity to represent you in the U.S. House of Representatives. Please feel free to visit my website (www.house.gov/burgess) or contact me with any future concerns.

Sincerely,
Michael C. Burgess, M.D.
Member of Congress

Pretty cool...it's my first time to write to them...I think I may start doing it quite often...Dustin would be so proud!

TEAM LIAM UPDATE
Wanted to mention a couple of things really quick. First off, I put the carriage before the horse in my last post and told you I was going to have a page on this blog that had all the TEAM LIAM updates...well, I can't do it the way I want, so we are creating a separate website for TEAM LIAM only. We already had the domain, so it should be up and running pretty soon. So bare with me for now!

Second and last, I have the first TEAM LIAM Running Team event that I would love for the team to run together. My thought was to have one race each month, starting in September, to get together and run. The race for September is going to be the Tour des Fleurs at the Arboretum in Dallas, on Saturday, September 18th. You can check out their website at www.tourdesfleurs.com. I am waiting on my wonderful babysitters (love you Grandpa and Mimi!!) to let me know if they are available before I sign Dustin and I both up for it.

Thanks for everyone who is supporting our cause for TEAM LIAM!! We have an exciting season planned, so we hope everyone will get involved and make a difference!!

7.26.10 - My to-do list is growing!

It's been awhile since I've posted! In the meantime, I've been catching up on reading my other favorite blogs, organizing more ideas for TEAM LIAM and basically staying busy! I can't believe summer is more than halfway over...There is a LOT to do for us around here!

Liam continues to do well, now almost 8 weeks post-op. I think we have even made it about 3 or 4 full weeks without vomiting, congestion or scary moments! His nighttime sleeping seems to be the only thing that remains a mystery and an issue for him. Last night, he awoke every 1-2 hours crying and was unable to console himself back to sleep. Thankfully, when I check on him, I can quickly get him quieted, but it is starting to take a toll on me as I am not getting much sleep. This has been going on about 3 weeks now...and I just don't like the cry-it-out technique very much, I don't think it's good for either party involved. So, I am starting to make little changes each night, trying to rule out what might be causing him to wake up. Tonight, we fed him a little later dinner than normal, and I am going to cut his 9 pm sleating feed out...to rule out reflux. It's just hard with no road map....try this, try that. I feel like that's how we have navigated raising him his whole life!

We do have a cardiologist check-up appointment on Thursday, so I am hoping to ask some of my questions then. I am also curious, now that he is getting older and can eat more solid foods, how much formula we can go down to on his tube feedings (aka, cutting out the night feed maybe for good). Since his heart is probably still working harder than a normal heart, I need to see how many calories he needs daily and then work out a feeding schedule from that.

I am also planning on having another swallow study done pretty soon, hopefully within the first couple weeks of August. I am very anxious about it and praying hard that we can finally start moving down the road to him taking a bottle (or by now, a sippy cup!). We have been practicing a little at home with some honey thickener the therapist gave us, but Liam does not seem the bit interested in drinking or sucking down anything. If only there were a feeding attachment for a Soothie pacifier, as he still sucks the daylights outta those things!! And yes, I know they say for use 0-3 months....but sometimes you just gotta stick with what works around here!

So many things...I am feeling the strong urge to go write lists after list of things I need to do...AND Liam's 1 year birthday is quickly approaching too! I am excited for the next few months, but it's gonna take a lot of long hours to make everything come together on all fronts!

TEAM LIAM - Update
Speaking of coming together, I am going to start updating my progress on TEAM LIAM with each post I do. So at the bottom of each blog post, I'll add a quick paragraph or too with where we are at, so be on the lookout! I will also post that portion directly to the TEAM LIAM page on my blog as well, so if you just want to read those happenings and not my other rabbit holes, feel free to go to that page for updates as well!

As of right now, we have a growing running team! Several friends have stepped up to the plate to join TEAM LIAM in Running the Rock! We have runners doing both the half-marathon and full marathon, so if you are still thinking, gee, I would really love to run for Liam, then you should join us! The marathon only allows a certain number of participants, so once you decide, you should sign up soon at www.runtherock.com. Plus, your registration fee for the race goes to benefit Texas Scottish Rite Hospital, which is another great charity!

Right now I am working on getting corporate sponsorship letters prepared for those kind folk who would like to ask their workplaces or community businesses to help financially support our cause. If you are interested in sending out corporate sponsor letters, please send me an email at tara@johnsonheartbeat.com so I can email you the official letter with all the info. I am hoping to have these ready by August 15th, and hopefully I can figure out a way to link an attachment on our website for download as well!

Stay tuned...it's only going to get better!!

TEAM LIAM 2010 - Drumroll pleeease!!!

It's finally here. Reveal day for Team Liam. All the details are not quite finalized, but enough is done to finally get the word out since I can't wait anymore and we need to get the show on the road!

Dustin and I are excited to announce that we hope to raise $10,000 for the Children's Heart Foundation (CHF) through sponsorships and donations with our team that will run in the annual White Rock Marathon in Dallas on December 5. Yes, that's right. You heard me correctly, $10,000 is our goal and I think it's a great one. We CAN do this. And as far as the running goes, I CAN do it and so can YOU if you would like to join our team! What an amazing awesome experience this will be and I can't wait to be part of it and make a difference for CHD research. Our hope is that someday, our doctors will tell us they no longer need to open Liam's heart to fix it. No more surgeries. That there is a better, less invasive, less risky method to replace his valve or fix whatever other heart complications he may experience in his lifetime. Our dream is for other heart parents and children, for better treatment options; lessen the risks and increase outstanding results. And at the highest of priority, a CURE for CHD's. The Children's Heart Foundation solely supports such research, so we are choosing to support them as best we can.

So, if you are now jumping up and down and can't wait to get started, you can follow the link to our TEAM LIAM 2010 blog page (or click the title bar link at the top of the blog) where we have all the information you will need to find out exactly what the gameplan is and what you can do to help! Here is the rundown on how you can help us reach our goal:

1) Run with us!
2) Financially contribute to CHF on behalf of Team Liam through our page at www.firstgiving.com/teamliam2010
3) Be a corporate sponsor for TEAM LIAM
4) PRAY for our team and for the families affected by CHD's
5) Any combination of the above

The success of this event is up to God, but there is no limit on how hard we can work to reach our goal. We pray that it far exceeds our expectations!

7.15.10 - Mini-post

Tonight's post is going to be short and simple, mainly because I am exhausted from this busy week! Our really quick appointment yesterday with the surgeon was good - He said the bulge on Liam's chest was nothing to worry about, it is just the way his cartilage is healing up and it is still a little swollen...Praise God...I am always worried and have to prepare myself that it only takes one appointment, one check-up, for a whole new can of worms to open up. I'm glad yesterday was not that appointment. The incision sites all look great, and his skin around his g-tube has never looked better....it's been a GOOD week. Bring on some more goodness....nice for a change!

7.12.10 - Wedding weekend

Dustin and I had a wonderful time this weekend.  Our mini-weekend getaway for a good friend's wedding turned out to be perfect.  It was nice to get away...granted I did feel a little awkward and weird being out at our first social event in a LONG time.  But it was so much fun!  I tend to forget sometimes that it's ok to have a little fun and let loose... =)  So I did!

Here are a few pics from our evening out...

The happy couple

The beautiful bride Meg, Claudia and me - love my girls!

Claudia, me and bridesmaid Shannon - forever friends!

Outside Arlington Hall

My handsome husband!

Meanwhile at my parents, Liam had a great time with his Mimi and Ba Ba (I think that is what Liam is starting to call my dad - funny, because that name runs in our family!)  Unfortunately for him though, as we found out at the pediatrician's office the day before, he was fighting off a small infection in one of his chest drain incisions from his surgery and a yeast infection around his g-tube.  Literally both infections cropped up overnight, but just in time to get him on some antibiotics before the weekend. Though Liam never seemed like anything was bothering him or ever had a fever, so that is good news.  It was only Liam's second time to spend the night away from home (other than in a hospital), and his first night to spend away from home with out us.  Despite that, he slept great, ate well and was happy!  Thank you, my wonderful parents, for giving us a night off!  You are loved and always a BLESSING to us!

I decided to schedule a meeting for Wednesday (follow-up) with Liam's surgeon to have him check the incision site and also look at the bulge in his chest...We are praying the bulge is a normal (or reasonable) after effect of the surgery....but then again, it hasn't seemed to sit right with me since we first noticed it when we brought him home.  I have asked both the pediatrician and cardiologost what they think and they both just tell me we should keep an eye on it...Well, I don't do to well with just "keeping an eye on things"....I'd rather exhaust all my options of opinions and find out what it is.  So hopefully, we will get an answer.  

One last mention before I sign off for the night.  I am starting to add pages to my blog for different things, so check the underneath our main page header every now and then for new pages.  I completed the "Liam's Journey" page, so please check it out!  I need one more weekend to get Team Liam ready for it's reveal...so don't give up on me!  It's coming!!

7.8.10 - Weekend ahead!

I'm relaxing, getting a pedicure and manicure for the weekend ahead. Dustin and I are having a weekend just the two of us, while Liam stays with Mimi and Grandpa. A good friend of mine is getting married Saturday (congrats Meg and Michael!) so we are going to the wedding and staying at a hotel afterwards...I am really excited! Although I will really miss our lil one, it's been awhile since Dustin and I have gotten away, with just eachother...so, hence the mani pedi this afternoon! And tomorrow night, getting a tan!

Liam is doing great right now. He is eating baby food better and better each day, sleeping really well and laughing all the time! We had an appointment Tuesday to get Liam consulted for a helmet to fix his flat head...I didn't want it to come to this, but it's not getting any better and we have a limited window to correct it with the helmet. Thankfully, it should be covered 100% by our insurance, so there is no reason not to get one. They actually classified Liam as a "severe" case...so I'm glad we are moving forward with it. He should have to wear it anywhere between 3-6 months.

Liam also has his 9 month well check tomorrow and I am anxious to see what percentiles he is in. He seems to have hit a little plateau with his growth, but I think he is still average for his age.

More to come after the weekend! Love and blessings to you all!

7.5.10 - 4th full of firsts...

 
We had a great 4th of July weekend...it was so nice to finally spend some quality time hanging out, relaxing and spending time with our family.   Liam is doing really, really well right now and we hope this trend continues.  His congestion is almost entirely gone and he is finally getting back to his normal happy self.  We have two days left of the pain meds and then we are done.  He has been tolerating the decreases very well, with only some occasional fussiness, which we are now thinking might be attributed to some teething action going on....talk about some mega chewing and drooling!  Liam does not have any teeth yet, nor do I feel or see them coming, but we think they are getting ready to pop out.  Liam is officially 9 months old now, so surely some are close to being on their way out! I was hoping to have all his teeth come in while he was on the heavy medications, but I guess sometimes you can't have it all =)

Another HUGE huge milestone was also reached this weekend.  Especially with Liam's history with his vocal chord paralysis, we expected certain delays in his voice and words, but to our surprise, he is now saying MOMMA!!!  He has been babbling quite a bit for the past month or so, sometimes I could make out a mom, mommmaaaa, moooommmmaa, you get the picture.  But, he never seemed to be directing it at anything or anyone for that matter.  Well, this past Friday night, I was changing his diaper, and he blurted out "MOMMA" while looking straight at me and smiling....It made my heart leap for joy!!  And yes, I have witnesses, both my mom and Dustin both confirmed he was saying it intentionally towards me.  I couldn't be more proud, in fact I took a little video of it, because now that's his favorite thing to babble too!

 
We also started feeding him a little bit again over the weekend and he has been doing wonderfully, minimal to no congestion at all.  Things are finally starting to look the way I expected on the other side of surgery.  And while I know that there is always a looming "dark cloud" out there for us, I am going to just ride this wave as long as I can and not think about the dark.   We are TRULY blessed - each day is a victory, no matter how big or small!

Our weekend began with Dustin running the Liberty by the Lake 5k in the Colony Saturday morning.  He got third place in his division, out of about a hundred runners!  I was so proud of him!  I had planned on running too, but with everything going on the past couple month's, training has taken a back burner for me.  We did manage to get out to the race, even if it was after Dustin had already finished (due to the 5K walk my mom and I hiked to get to the finish line from where we parked!), but at least we got a couple pics....

About a half hour after Dustin got third place...

Mmmmm, yum!  Liam is liking having a taste of something other than baby food!

Saturday we also had Liam's aunt, uncle and cousins over for some family fun on the Wii.  Next on our list of toys to purchase for sure, we had a blast.  Here are some action shots, playing my personal favorite Just Dance...

 Sticking the tongue out really does help!

Let's see those moves!

 Hanging out watching the games!

And no pictures of myself though =)  My nieces were WAY better at dancing than I was anyways!

But it wasn't the Wii that caused the most laughs all weekend as Dustin found this strange, rubber...thing...I don't know what, I think it used to be an koosh ball of some sort lurking in a room somewhere...

We couldn't stop laughing at Dustin's funny faces....

 Liam...not so much

Uncle Mike got in on the fun...

At least it was patriotic...

No fireworks for us, as it was rainy with possible storms coming.  Maybe one year we will actually go watch them.  Sunday night, we did try to catch a glimpse over yonder,through the roofs and trees...

And finally, today I had the day off to spend with Liam while Dustin had to work.  I was going to take us for an outing to Ross and Target, but the muddy stroller wheels left over from Saturday's trek to the lake race dashed my hopes of getting us out of the house.  But, it was a great day nonetheless and I got some more great pics this morning or our little man...

Hope everyone had a safe and happy 4th!  We did make some progress on Team Liam, so soon enough we will have everything ready for the reveal in about a week!  Stay tuned and be BLESSED!!

6.29.10 - Evening edition

Liam had two appointments today - The Occupational/Speech Therapist (O/ST) at 9 am and then to Dr. Verma (cardiologist) at 3 pm.

First with the O/ST meeting:
I finally got Liam re-enrolled with therapy for his feeding issues, so the consultation interview and assessment was this morning. My dad oversaw the meeting while I was at work. The O/ST is the same therapist we have had before, so I felt quite comfortable letting her work on Liam while my dad was here without me. Plus we had a nice long discussion on Sunday about what my vision and plans were for Liam as far as therapy goes...I told her about the issues we have been having with Liam's congestion during and after feedings, and she seemed concerned too. It felt good to have a professional validate what I was thinking and how hesitant I am to proceed with oral feedings. She agreed that we should not do any oral feeds until we get another swallow study done later in the summer. We both agreed that Liam needs to take time to heal his airway and overall in general before we attempt to start oral feeds again. Just like everything with Liam, that's how he likes it, slow and steady. Still no answers as to what is causing the congestion, but at least we will have the O/ST overseeing him a couple times a week to help keep an eye on things.

And now for the appointment with Dr. Verma:
His heart looks great - AMEN! Dr. Verma is very happy with Liam's heart right now. He did say that the left pulmonary artery (going to the lungs) is narrowed more than the right and is "flowing faster than the right side", but he said it is not an immediate concern and will probably just put a stint in during his next valve replacement surgery in a few years. Liam's O2 sats were 98, which is amazing (Of course, this was after I got him to stop crying though) and we are also able to cut down on one of the meds Liam is on, lasix, to once per day instead of twice. We are also less than a week away from completely weaning him off the narcotics! YAY! I did speak with Dr. Verma about the congestion issue with feeds, and he recommended we just keep an eye on it for now and possibly have the ENT do a re-check in a month or so to make sure his airway has healed up ok. Other than that, this follow-up couldn't have been better!

Liam is sleeping better and better each night. In fact, I have not had to go into his room other than to give him meds, since I took over night duty this past weekend. We are SO blessed to have such a good little sleeper. That was actually one of my fears for the side effects of this surgery is that he would never sleep through the night again...so thankful that is not the case! I think God knows sleep issues are way more than I can handle...as I myself require a bit more than the usual adult to function properly...or politely ;0).

That's all for tonight folks. All my talk about sleep is making me want to do just that...Goodnight!

6.26.10 - Sunny side up please....

And no, not for my eggs for breakfast. While we were in the hospital, the nutritionist on staff came to talk with me about Liam's feeding regimen. We talked for quite awhile about all sorts of interesting nutrition things and she confirmed I was doing the right things for feeding Liam. I expressed to her my concern that he had been throwing up quite a bit before the surgery, but she assured me that this was most likely caused by the lack of oxygen he had prior to surgery and that I could expect a "different child" after we brought him home as far as his GI issues go. Well, I've been clinging to that hope that the surgery would be a cure-all for all Liam's quirks and issues. It was even proving to be true as we got through the week without even spit-up to be concerned with. Then came this morning...

Oh I've learned if it's not one thing, it will be another. Liam vomited after his 9 am feeding this morning. Liam started sounding congested again halfway through his feeding, which I thought was strange because he had been sounding very clear the past few days. Then about 45 minutes after the end of his feeding, he started coughing and then that led to everything coming back up onto the floor....So back to square one with his feeding issues. I am pretty sure that he is refluxing, because I don't know what else could be causing this. My mom even mentioned one of his afternoon tube feedings he sounded really congested. I have also noticed that when I feed him solid foods, he sounds really congested during and immediately after eating too. I am to the point where I am scared to feed him solids because I'm scared he is aspirating it. Thankfully we will be starting feeding therapy again, so I am hoping this will ease my fears...I am also going to get him in to see the GI. I feel like I can't wing it anymore. I know his heart is fine and his oxygen levels are great, so there isn't any excuses for it anymore. I am fearful that my plan to get him off the feeding tube by the end of the year might be slipping away...let's hope that I can get some answers!

We did have some good news before the hiccup this morning. The pedi said Liam looks and sounds great and his O2 at the office was a wonderful 96%! Yay for Liam! She told me she was so happy to see him so pink!

So, yes. I would like our life to stay sunny side up...please...Lord, we need you to keep being You and move these mountains for us....We cannot do it alone!

6.24.10 - Summer plans

So things at home are going pretty good, and dare I say, it's a little quiet around here. Liam continues to do well off the oxygen, no scary blue moments yet. We are also still weaning him down on his medications, which is going smoother than I had anticipated, with no withdrawal symptoms to speak of. Sleeping at night seems to be our only challenge right now. I would say we are enjoying a nice break from crazy.

I have finally realized (after June has slipped through my fingers in an instant!) summer is fully underway. I drive home past the water park each day, a little jealous that I can't be there, soaking up the sun, having fun with the fam. That's how I know it's really summer. Our summer this year will be full of healing and therapy...I would say only for Liam, but I think I'll get in on the action too. I went a little overboard at Half Price books last weekend and bought a bunch of books that seemed relevant to where I am at spiritually in my life right now and where I want to be. I do know there is healing and definitely some therapy that needs to take place with me with God...you can't go through trauma without some baggage being kept along the way. So as Liam is meeting with the speech therapist and physical therapist, momma's got her meeting with the great Healer too. Hopefully come fall, I will be whole again and Liam will be able to drink from a sippy cup...that's the plan at least =)

I did want to briefly mention that I am planning something BIG for winter....I don't have all the details worked out just yet, but I am excited to soon be able to share an amazing opportunity with everyone...TEAM LIAM. That's all I can say for now, so you'll have to stay tuned to the blog as I iron out the details and get the show on the road!

And lastly, for those of you (and for me when I can't remember and have to go to my blog for dates of happenings) who are appointment people, Liam goes to the pediatrician tomorrow for a post-surgery check-up and then we go see Dr. Verma (cardio) next Tuesday. Prayer needs are for a solution or answers to what is causing his congestion problem and also that his heart is pumping like it should.

And now for some pictures...

So what's wrong with this picture?  Mimi and mommy have had a long sleepless week....

Tags go on the front right?

Dad to the rescue....

Now it's right!  

Had to add this one for the "fans"

Grandpa's favorite teams...Cowboys and of course, MIZZOU!