From the Mouth of my Babe - Volume 3

A few days ago, I was in the car singing my own acappella version of Adele's "Rolling in the Deep".  After I belted out the first line - there's a fire starting in my heart (Actually, I sang, "there's a fire burning in my soul" - but, who's counting?) - Ethan joined in from the backseat, in true Bible song fashion:

"Where?!"

Now, that's a new one.  "I've got the fire, fire, fire, fire down in my heart..."  All together, now!

*****

Ethan's speech therapist was working on a language activity with him this morning.  She pointed to a girl in the picture and said, "Hmm ... I wonder what her name is?"  Ethan thought for a second, tapped his index finger on his lips and said, "I know! G-N-Y.  Granny!"

Some of you are not surprised.  Only my child would be more interested in reading and spelling than peeing in a toilet.

*****

Ethan has been talking about his birthday a lot lately - the party, the cake, and what kind of presents he wants.  Recently, he and I were hanging out at home and he asked me, "Ethan get a baby for Christmas?".  

Given that Christmas is just over nine months away, he's making me wonder if he knows something I don't!

*****

To infinity and beyond, kiddo.

Potty Talk - Revisited

Well, three days in and Ethan is back to diapers.  I hear that's a big no-no in the potty training world, but I'm learning that - as with everything else - there are no general guidelines I can follow for how to parent Ethan.  All of the "rules" that come along with the three biggest areas of toddler behavior - eating, sleeping, and using the restroom - never seem to apply in our situations.  There is always something else to take into consideration.

Maybe he doesn't nap because he sleeps 13 hours at night, and maybe that's because his heart needs a break after a day of activity.

Maybe he didn't eat because part of his stomach is sewn around his esophagus, because he almost died when he was 6 weeks old.

Maybe he will be 5 years old and still in diapers, and maybe that will have something to do with the extensive work that's taken place down there.

I don't struggle with this often - the woe-is-my-child-and-when-will-he-catch-a-break mentality - but when it hits, it hits hard.  I just want things to be easy for him, and I've prayed from early on that God would protect his mind from the anxiety and psychological damage that can come along with being a chronically ill child.

Long story short, Ethan started displaying some signs of extreme anxiety and/or fear about using the potty.  I have no idea where it came from and, so far, it's been explained best by his developmental therapist.  It appears that he's in a power struggle with himself and is having a really hard time giving up control of his bodily functions.  Even the nurse I spoke with this morning feels that this is strictly behavioral.

Around 1:00 this morning, however, that didn't seem to be the case.

I was awaken by Ethan crying out in pain and instantly ran into his room.  I found him jumping up in down, holding himself, and crying uncontrollably.  I reached down and expected to find a full diaper, thinking his behavior could be explained by him being upset he had "an accident".  When I discovered his diaper was dry, and realized it had been about 11 hours since any form of elimination, I began to feel sick to my stomach.  I feared the worst, given his history, and genuinely thought he wasn't physically able to relieve himself.  He did, eventually, and filled his diaper in the process - but not without many tears on his end, and lots of reassurance on mine.

It's as if he doesn't want to wet his diaper, but he's afraid to use the toilet/potty seat.  So he holds it, and it sucks.  This internal battle of his is written all across his face and is showing itself in extreme clingy-ness to me.  Not to mention he just seems uncomfortable.

The nurse of Ethan's urologist assured me that if everything was OK earlier in the week, then it most likely still is, and we're dealing with purely a behavioral issue.  She suggested that we stop the potty training process altogether (which I had already decided to do) and watch him over the weekend.  If Ethan is still really struggling come Monday, his urologist will fit him into clinic that day.

To say I'm frustrated would be an understatement.  I am, for sure, but there's so much more to it.  Sad, concerned, and stressed - with a dose of frustration - is more like it.  I'm not sure there's a word to sum up all of that.


Once again, I covet your prayers for my boy.  Pray for a calm mind, relaxed urination, and hydration.  Call me crazy, but I really think he understands the correlation between drinking water and needing to pee, which has resulted in him refusing water last night and today.  You can also say a little prayer for me, that I'll lose this intense feeling that I'm somehow damaging my child.  Many of you have already assured me of that, but I don't think it has sunk in quite yet.

And, please.  If you have any experience with anything remotely similar to this, I'd love to hear it.

Wordless {captioned} Wednesday

A Granny and her boy (Thanks, Jessi!)

Icing lipstick

I'm at home on the water

Family

Breakfast date

Loved

Potty Talk

Well - after talking about it, and putting it off, and talking about it some more - we finally started the potty training process today.  I'm not gonna lie - I woke up this morning dreading the idea.  I even thought about stalling yet again, but I knew it was time.  I know it's time.

After getting over the small hump of Ethan telling me to, "leave those underwear over there", we started our day without diapers.  A couple hours into the morning, I found myself wondering if Ethan would ever pee again.

Sounds ridiculous, right?

I've changed diapers for almost 3 years now and suddenly, two hours into a pair of dry underwear, I'm convinced that Ethan will hold his urine forever.  I asked a couple of friends about it, to the tune of "shouldn't he be peeing by now?!" and even turned to trusty ol' Google.  Thanks to the auto fill-in feature, I know I'm not alone.  Just a few words into my search - "how often should a preschooler..." - Google anticipates my need and fills in "pee"

Just in time for accident #1.

(If you're wondering, the answer to my question is about every 2.5 hours, evidently.)

Accidents two and three followed shortly after, and I began thinking about the $65 we just wasted on preschool registration because clearly my child will still be in diapers come September.

With no successes during our morning, I was super thankful for nap-time and absorbent diapers.  Ethan didn't sleep, but he did spend some time playing in his room while I took a breather.  He emerged from his room a couple hours later with a full diaper, declaring he was "all done sleeping", and gladly stepped into a pair of clean undies.

After the 2nd or 3rd trip to the potty (with no luck) I decided to leave him bare-bottomed for the remainder of the afternoon and evening.  Maybe it's a coincidence, or maybe there's something to it, but Ethan had not one - but, TWO - successful trips to the bathroom, with zero accidents, before getting ready for bed tonight!

He's a monster.  Didn't you know?

I told Jeramie earlier tonight that I needed those successes.  Ethan did, too, and the pride he had for himself was spread wide across his face.  But, I really needed it.  My mind can go all kinds of crazy sometimes, and I was craving the reassurance that this is one more thing that Ethan is capable of doing.

I'm actually kind of excited to see what tomorrow will bring.

A Quick Update

Thank you for all the prayers and well wishes for my sweet boy! Ethan still had a fever by the time he went to bed Monday night and it stayed in the low-grade range all day on Tuesday.  I gave him a dose of Motrin Tuesday evening, and we haven't seen any signs of it spiking since then.

Thank you, Jesus!

Yesterday (Wednesday) he was still acting pretty puny - whiny, clingy, congested, no appetite - but he seems to be back in action today!

Winter is almost over, right?

Thanks again for keeping our boy close to your hearts! I'll leave you with a few photos that have made me happy over the past few days...

Giveaway Winner!

Happy Valentine's Day, y'all!

I had to laugh at a friend's Facebook status this morning about getting ready for a date tonight.  Jeramie and I tried to have a "stay-at-home date" last night, but I guess the events of the past few days wore me out.  I fell asleep watching the movie we picked out and, the next thing I remember, he's helping me off the couch at 12:30 this morning! Oh well - we can't win 'em all.

Now, how about a little extra love for one of you?? I have to admit, I really enjoyed hosting this giveaway.  It gave me the opportunity to connect with some new-to-me heart families, and hear from some of the more "quiet" readers.  I appreciate each of you taking the time to comment, share, and like our Facebook page!

I used Random.org to come up with the winning entry number...

...and entry #36, with the comment, "Liked the Facebook page as well. :-)" is...

 Jenn 

 (Jennifer N. - contact me and I'll get your tile to you!)

If you're bummed you didn't win, hop on over to the I Heart U Etsy shop to browse some of the other tiles.  The owner, Michelle, is friendly, extremely easy to work with, and ships quickly! She has added some new tiles since I've last looked and they're all gorgeous!

Thanks again for all the love y'all show my family.  I hope each of you feel loved and appreciated today, and every day to follow!

CHD Awareness Week - The Long Story...

Today is the LAST DAY to enter the giveaway here, and over at Tara's blog.  That's TWO chances to an awesome piece of "heart art"! What are you waiting for? Go enter! Winners will be announced tomorrow.  Good luck!

*****

Congenital heart defects remind me of a thirteen-year old girl.  Straight-up dramatic.  From being diagnosed with them, to living with them, and everything in between - they cause all sorts of drama in the lives of those affected by them.

While we had our fair share of drama during Ethan's early days, we've been pretty lucky as of late.  His cath back in May was as dramatic as it's been since his last open-heart surgery in September '09.

That is, until yesterday.

I guess it all started on Saturday afternoon, though, when I noticed that Ethan was feeling a little warm and had an elevated heart rate.  I explained away the quick beats with the fever, and we put him to bed Saturday night with medicine in his system, and with hopes of a better Sunday.

Then yesterday happened.

From the time he woke up Sunday morning, until mid-day, I noticed his heart rate was holding steady at 140 beats per minute - the exact rate it was on Saturday afternoon.  This is high for Ethan, with his baseline being in the low 100s, and the non-fluctuating rate was a bit concerning.  Not to mention, his fever had gotten as high as 103 degrees with fever reducer in his system! We paged his cardiologist, Dr. I, around 1:30 yesterday afternoon and he agreed that something seemed "off".  We were in close contact with him throughout the entire afternoon, as we watched Ethan's temperature soar as high as 105 and listened to his heart skip away at 160 beats per minute.

By that point, we figured out that Tylenol wasn't coming close to reducing the fever and had switched to Motrin.  This gave Ethan what we now call the "Motrin high", and we thought we were out of the woods by dinner time last night.

We put Ethan to bed as usual, got a call from Dr. I around 9:15 to check-in, and we chatted about all the possibilities.  We felt comfortable staying away from the ER as it seemed the high heart rate was directly related to the fever, and not due to an arrhythmia development.  If we could just manage the fever, his heart rate would come down, we concluded, and we didn't want to subject Ethan to any additional hospital germs.  We hung up with Dr. I feeling confident in our plan and thankful for such an extraordinary doctor.

Then, around 10:15 last night, Ethan woke up vomiting as his fever spiked through the Motrin.  His heart rate had reached an astounding 175 beats per minute and he was shivering with every breath.  Jeramie and I instantly knew it was "go time", and I paged Dr. I to update him on Ethan's status.  

I'm not gonna lie - my first thought was that Ethan would have a febrile seizure in the time it took us to get Motrin back into his system.  Drama.

By the time we got the emergency department, Dr. I had called ahead and a room was ready for us.  The ED team started their assessments right away and, for a split second, we thought we were going to go home with an antibiotic for an ear infection.  His ears checked out fine, however, as did his throat and lungs.  The nurses came back a couple hours later for a blood draw, which pointed to all of this being viral in nature.

And y'all know how much I just loooooove a virus.

The cardio fellow ordered fluids to absolutely ensure Ethan wouldn't become dehydrated, and then we waited.

With there being no evidence of a bacterial infection, Ethan stayed in the ED for observation.  His heart rate was perfect throughout the night (of course!) and the fever stayed away, even after the Motrin wore off.  We were finally discharged around 5:30 this morning, feeling super hopeful that all of this was behind us.

The three of us crashed as soon as we got home, then Ethan woke up around 8:00 burning up and tachy.  Motrin, our new hero drug, came to the rescue once again and brought everything back to normal.  We've stayed on top of the dosing throughout the day today, and we'll know by tonight if the fever is gone for good.

The good news in all of this is that it doesn't appear to be a heart issue.  Yesterday morning, we were pretty concerned about Ethan developing an arrhythmia, but the high heart rate appears to be directly correlated to the high fever.  As long as we can keep the fever under control, his heart rate should return to normal, just as we originally thought.  

Equally good news is that, during those times when his rate is significantly elevated, his right ventricle is now strong enough to keep up with the demand and is able to pump blood adequately through the conduit.  Two years ago, we wouldn't have been able to say that.

Amen?

We covet your prayers and ask that you would pray with us for the following:

-that there will be no signs of a fever at Ethan's next scheduled dose of Motrin (8:30 p.m. - EST)

-that his heart rate will stay in the normal range

-that he'll stay well hydrated with no further viral symptoms

It may be a dramatic life, but it's our life - a life with CHDs.

I Heart Faces Photo Challenge - "Heart"

With a faded scar running down his chest, and a pacemaker peeking out from behind his elbow, my son embodies all things "heart".

Check out other entries by clicking below:

*****

Congenital Heart Defect Awareness Week is February 7-14, 2012!

CHD Awareness Week, continued

Remember to check out the giveaway post and submit your 3 entries for a chance to win that beautiful mosaic tile.

Also, Tara is giving away another awesome piece of "heart art".  Go check it out!

*****

Thanks for the support y'all showed to my post over at Triangle Moms on Main! I really appreciated the kind comments, and everyone who shared it.  Stay tuned for part two, which will be posted on Valentine's day!

In case you missed it on Facebook - Ethan and I, along with another local heart family, were interviewed at Duke Children's yesterday! We're super thankful for News 14 Carolina who gave us the opportunity to tell our stories.   

Watch it here, and feel free to share it.

I still haven't heard from good ol' Governor Perdue about this year's proclamation, but we're plugging away with our awareness efforts anyway!

And, what is awareness without action? This petition needs 25,000 signatures before March 3rd.  Today is February 11th and there are currently 501 signatures.  It literally took me less than two minutes to create an account and sign it.   

Sign it, then pass it on.  Please.

*****

Hope y'all are having a great weekend!

The start of our weekend - pink eye and a fever..

CHD Awareness Week - Day 2

Remember to check out the giveaway post and submit your 3 entries for a chance to win that beautiful mosaic tile.

Also, Tara is giving away another awesome piece of "heart art".  Go check it out!

*******

I don't have anything planned for today, but wanted to share some recent photos and videos of Ethan.  It is terrifying to think back on how close we were to losing him, and how badly Satan wanted to shake our faith during that time.

Well, almost three years later, I think it's quite obvious that life abounds in this little boy, and I pray it's even more obvious as to who's getting the glory for it all.

Enjoy!

One of a Kind for One in One Hundred

Happy Congenital Heart Defect Awareness Week!

I learned a statistic recently that shocked me - about 1 in 110 children in the United States have an autism spectrum disorder.  (CDC - November 2011)

Do those numbers sound familiar?

How is it that pretty much anyone you meet knows about autism, but I continue to get dumfounded looks when I try to explain to someone that my child has something wrong with his heart?! Don't get me wrong; I was one of those people 3 years ago, but statistics like that are proof that we have to keep spreading the word about congenital heart defects! As much as I wish "CHD" wasn't a part of my vocabulary, it is - and the world needs to know what those three little letters are doing to our babies!

End rant ... for now.

Exciting things are happening this week all over the blog-o-sphere! Stefenie is continuing her yearly tradition of interviewing fellow Heart Moms, and Jenny will be blogging about the HOPE we have for our children.  I know there will be more to come, and I'll be sure to share as things pop up.

There's good stuff taking place here, too.  I am a guest blogger for Triangle Moms on Main this week, with my first post being published this morning, 

AND...

I'm hosting my very first giveaway!

A few weeks ago, I was browsing Etsy for some "heart art".  I'm always in the market for anything heart-related, and I was hoping to find inspiration for Ethan's bathroom.  Well, I found it.

A ready-to-hang, 5 inch square tile covered in beautifully broken pieces of glass.  I instantly contacted the shop owner - check out her stuff! - to purchase this piece, and told her a little bit about congenital heart defects in the process.  Through our conversation she generously agreed to donate a second tile to be given away to one of you!

Since no two tiles are the same, here's the one that's up for grabs (and made especially for this giveaway):

Is that perfect for this week, or what?! Whether you're personally affected by heart defects, or not, this is a gorgeous reminder that it's all about love, and the heart from which it comes - in all of its broken-turned-beautiful glory.

So, you want to win it? Here's how:

1.  For one entry, leave a comment below and tell me where you would hang the tile in your house.
2.  For a second entry, leave another comment telling me that you've shared this post on Facebook/Twitter/your blog.
3.  For a third entry, "like" our Signs of Life page on Facebook, and leave a comment here telling me that you did so (or that you already have!).

That's it! Three easy ways to play, and it could be yours.  You'll have from now until 11:59 p.m. on February 13th to comment, share, and like; the winner will be chosen at random and announced at the end of CHD Awareness Week on February 14th.

Ready? ... Set? ... Go raise some awareness, and good luck!

American Heart Month - 2012

{In case you haven't seen it, here is President Obama's proclamation for American Heart Month!}

To kick off this month of hearts and love, Blue Cross and Blue Shield of NC - our insurance company and Jeramie's employer - ran a story on Ethan! Unfortunately, it was only posted to their intraweb, so I can't publicly link to it.  However, in an effort to preserve it and share it, I thought I would post it here.

I am so proud of my hubby for stepping up to share Ethan's story, and for advocating for pulse ox screenings in the process!

Happy heart month, y'all!

"A fight for his son’s life was the last thing Jeramie Mullis expected after witnessing the miracle of birth. And it all happened so fast:

6:46 a.m. – Ethan, a beautiful baby boy was welcomed to the world by his parents Jeramie and Joye Mullis.

2:00 p.m. – A nurse at REX Hospital noticed Ethan was bluish in the face, a sign of a heart defect.

9:00 p.m. – Baby Ethan was put in a Life Flight ambulance to Duke Hospital.

'We weren’t sure if he’d make it,' said Jeramie, Ethan’s father and a BCBSNC operations specialist. 'The nurses made us a bereavement kit with Ethan’s hat and impressions of his feet, should the worst happen.'

Doctors discovered Ethan had multiple different heart defects. The most serious, pulmonary atresia, meant a blocked valve was causing Ethan’s oxygen saturation in his blood to dip too low. He needed surgery, and he needed it fast. At just 3 days old, Jeramie and Joye had no choice but to trust Ethan would pull through a risky surgery.

After weeks in an induced coma, a pacemaker and 3 years of constant monitoring, Ethan is thriving and the Mullis family has a lot to be thankful for.

'The experience fundamentally changed us as people and as parents,' said Jeramie.

 Jeramie, Joye and Ethan are now passionate supporters of the American Heart Association and raise money for the annual walk each year – so far they’re up to $6,000! And while Jeramie says he firmly believes in the groundbreaking research and help for others made possible by donations, there’s something money can’t buy. His one message for new parents is to demand your newborn gets a pulse oximetry test to measure oxygen saturation.

'It’s so simple but can completely change the course of treatment for a newborn with a heart defect,' said Jeramie. 'It could save your child’s life. It saved Ethan’s life.'"