Friday, April 29, 2011

here comes the sun

Today was a gorgeous day in Raleigh! It was a nice change from the scary weather we've been having lately, and it was welcomed with swimming trunks and beach towels. Ethan and I met our friends, Jen and Jay, at a local indoor pool, and the boys spent a couple of hours jumping, floating, dunking, and splashing!

Aside from the fact that Ethan turned into a blueberry just minutes after being in the water, and proceeded to shiver two-thirds of the time we were there, I'd say he had a great time! He even went underwater at one point, and I couldn't decide if I wanted to applaud him or call down the lifeguard.

I applauded.

In fact, I've been applauding him a lot lately. This kid is making me so proud, in so many ways. He started speech therapy just this week and, already, he is self-correcting when he realizes he sounds a bit "off".

(Before you think I'm some paranoid Mama who already has her child in speech, let me assure you I'm not. Ethan has formed a bad habit that involves him pushing air out through his nose versus his mouth. It creates a super nasal-y sound and makes his speech difficult to understand to people who don't know the quirks behind it.)

Just tonight, we were driving home and saw an orange ambulance. He said, "oran{nasal sound} truck!" (Because, really .. who would think to call an orange ambulance an ambulance?!) Then, before I could say anything he says, "Nose. Air sound. Oran-ch." This is the technique his speech therapist has taught him. She points out that the sound he made came through his nose, and we want to hear it come out of his mouth; an air sound. Then she shows him the correct way to make the sound. Homeboy went through those three steps, on his own, and was able to make the correct sound without me saying a word!

I'd bet the driver of the car beside me thought about calling over that orange ambulance.

So, now that the lion has roared its way through the south, I'm looking forward to the quietness of the lamb. To more trips to the pool, to spending time at the lake, to cheering on my son until I'm blue in the face, all in the company of family and friends.

I think Ethan's ready, too.

Wednesday, April 27, 2011

Sunday, April 24, 2011

He is risen...

...He is risen, indeed! Whoa.

Happy Easter, y'all.

Thursday, April 21, 2011


Thank you for your prayers for sweet Charlotte. She came through surgery wonderfully yesterday, and looks absolutely fantastic today! I was able to see her for a little bit this afternoon, and spent some time talking with her refreshing-for-the-soul Mama.

Pink smiles for pink Charlotte!

All in all, it was a good day.

Backing up a few hours, we started out the morning with Ethan's cardiology check-up. Let's start with the good...

He behaved so well. I talked about this appointment until I was sick of hearing my own voice, but I really think it helped! And, I'll tell you what; by the time we walked into Dr. I's office today, Ethan knew who would be putting stickers where and how many there would be. Too bad Dr. I's nurse was out, and he didn't need a 12-lead EKG after all. Oh well. I guess we'll just be super-prepared for next time.

The blood pressure cuff was the only thing that caused a complete meltdown, although they were able to get a reading this time. Albeit, high, but a reading nonetheless. I couldn't believe it as Ethan held out his index finger for the PulseOx, and sat perfectly still while Dr. I interrogated his pacemaker. It was an answer to prayer, for sure, and even more proof that my baby is really growing up!

Ethan's growth was also a topic of good news today. He has gained two pounds and grown an inch and a half in three months! Dr. I has always been in our corner with giving Ethan time to settle on his own curve, and I think he felt good about looking at his growth chart this morning and saying, "I knew it."

Fun fact about the gown Ethan is wearing: this is the hospital gown I wore on the day my sister was born. It's 25 years old!!

Ethan's heart function looks great, as well. This could have been questionable, given the not-so-good news we received, but his heart is squeezing nicely and that's always a plus!

The conduit, however, did not earn good marks. It appears that we have entered into "go-time", as the pressure gradient across the conduit, at the insertion point, measured a whopping 116 mmHg. This is not good; not good at all. (Remember, less than 20 is normal/ideal.) Dr. I is going to present Ethan's case to the Peds Cardiac Surgical Conference in a couple of weeks and come up with a plan.

This plan could involve sending Ethan back to the cath lab to see if the high pressure is caused by an obstruction in the conduit that can be ballooned open. The more likely scenario is that surgery will be needed to replace the conduit altogether. If that is the case, everyone will agree that it should be done before the fall (AKA cold and flu season), so he could be going back into the operating room sometime this summer.

We left the appointment kind of like you leave the car dealership. Three months, or three thousand miles ... whichever comes first. In our case, we'll go back to see Dr. I in mid-July, or we'll have a plan for surgery before then.

Oh, and Ethan's also hooked up to a Holter monitor for 24 hours. During the pacemaker interrogation, Dr. I noticed that his atria seemed to be functioning in some sort of atrial arrhythmia. It seemed innocent enough, but he wanted to monitor Ethan for 24 hours just to make sure. If Ethan's top chambers are entering into some sort of irregular beat, he's not showing any evidence of it, which is encouraging. I'm hoping the results will even be read-able. Trying to keep six leads, and a bulky monitor, strapped to a two-year old is not easy!

Walking out of Dr. I's office, Holter case in hand.

Have you ever seen such a crazy night time get-up?!

I'm feeling pretty good about everything. We know that Ethan will require multiple conduit replacements and, while we would like to have a little more time between surgeries, there's not much we can do about that.

I was reminded today of one of God's many names, El Roi, the one who sees (Genesis 16:13). How comforting to know that He watches over us, knows the numbers of hairs on our heads, and leads us through the deserts of life. I will choose to rest in this as we await "the plan" ... the plan He already knows, after all.

"From heaven, the Lord looks down and sees all mankind; from His dwelling place He watches all who live on the Earth - He who forms the hearts of all, who considers everything they do."
-Psalm 33:13-15

Wednesday, April 20, 2011

Monday, April 18, 2011

Matters of the Heart(s)

Hey friends. First things first ... we're OK! Many of you have seen the reports of our scary weekend here in North Carolina and have checked in over the past few days. Our neighborhood took a hard hit, but our home did not suffer any damage. Many of our friends and neighbors are not able to say the same, though. Please keep our state close in prayer as folks are mourning the loss of their loved ones, and their homes.

That aside, I want to tell y'all about a few things going on in the CHD community. I have met many amazing women on this journey, and a few of them have gotten together to create Sisters by Heart. Please check out their video and, if you feel led, support their mission!

Speaking of HLHS, sweet Charlotte and her family will be traveling to Duke this week for Charlotte's third (read: final!!!) heart surgery! Although Ethan's surgical needs are quite different, I still get so stinking excited when our HLHS friends go in for this last surgery. Charlotte's mom, Jenn, has been "Counting Down to Pink" on her blog, and I used this as my prime opportunity to buy Ethan a new pink polo for the spring/summer! Although I sound light-hearted, this is still heart surgery, and I would appreciate all of you lifting up Charlotte and her family (mom: Jenn, dad: Tim, big brother: Sam) in prayer this week. Her surgery is scheduled for Wednesday morning.

Finally, on a personal note, Ethan has a cardiology check-up on Thursday of this week. This is the appointment that was supposed to be made six months out from his last one, but Dr. I felt the need to bring Ethan back in three. He will mainly be measuring the pressure gradient where Ethan's conduit is sewn into his pulmonary artery. It was in the mid-to-upper 70s in January, and a reading of 90mmHg or higher will require some sort of intervention. Y'all, it's very likely we're already there.

I'm not going to play the "what if" game, but I will ask you to pray for God's peace to surround all three of us on Thursday. Ethan has become increasingly wary of people messing with him, and has not allowed us to easily perform his monthly pacemaker call-ins. I borrowed an idea from fellow heart mom, Jesse, and got some EKG stickers from Dr. I's office last week. I hope that doing some pretend play this week will lessen his anxiety come Thursday.

So, that's all I have for now. I got word earlier this afternoon that our power has been restored, so I'll upload pictures of the tornado craziness once we get back home and settled!

Thank you, in advance, for your prayers for Charlotte this week.

Wednesday, April 13, 2011

Wordless Wednesday - The Introduction

I frequent many blogs, whose authors utilize the "Wordless Wednesday" concept, and I've decided to jump on the bandwagon!

Our Flickr membership just recently expired, and it's not exactly in the budget to renew, so I figured I would use the ol' bloggy blog to share some (more) of our pictures. The idea is that, each Wednesday, I will post a slew of photos for your viewing pleasure, and will not include any text with it. Obviously, I cheated this week...

So, without further ado ... Wordless Wednesday:

Tuesday, April 12, 2011

Monday, April 11, 2011


About a month ago, one of Ethan's former PCICU roommates was back at Duke recovering from her 3rd open heart surgery. This particular day also happened to be Jordyn's 2nd birthday and I knew I wanted to go visit her.

(Side note: Jordyn's mom was actually two hours away, at a hospital in Wilmington, having just given birth to twins! She is, without a doubt, one of my heroes!)

I sent a message to Jordyn's grandma expressing our desire to stop by for a visit, and we began to work out the details. When I got the message explaining what room they were in, I felt my eyes swell with tears and a lump formed in my throat.


My first reaction was, "no way". I thought to myself, "I cannot go back to that room." I called Jeramie and asked if he thought I could do this, if I was ready. We decided that, together, we could, and I warned Jordyn's grandma that tears might ensue.

You see, 5324 is the room that became our home away from home. It is the room we were scheduled to be discharged from, and it is the room that sent Ethan back to the ICU.

Ethan's heart stopped in room 5324 and I just knew I would never be able to step across its threshold again.

In fact, during some recent mentor training through the advisory council I'm a part of, I named room 5324 as my "trigger". At that time, it was the thing I wouldn't be able to get past in order to meet with families. Even on recent visits to the 5th floor, just looking down the long hallway towards its doorway put knots in my stomach.

However, visiting Jordyn was important to me and I felt God nudging... "You think you can't do this, but you can. You can." With a few deep breaths and a knowing glance in each others' direction, Jeramie and I approached the room, trusting that God would calm our hearts.

And, y'all know what?

I felt peace, peace that passes all understanding, wash over me. It wasn't the war zone that was still burned into my memory. There weren't empty syringes laying in every corner of the room. Ethan's blue and white striped gown wasn't thrown haphazardly on the floor. There weren't forty people in the room, and no one was doing chest compressions.

Instead, there were two vibrant, beautiful, miraculous toddlers sharing chalk, blowing bubbles, and playing "doctor". There was health reflected in Jordyn's pink lips, and there was healing as I watched Ethan climb up into the bed on which his body was brought back to life.

It was one of the most ordained moments of my life. I found myself in awe when Jordyn's nurse came in to check on her. I had never met her before but, as soon as we were introduced, she said, "Oh, wow. This was a tough room for you guys. I was in here the night he coded. But, man ... look at him now!" It blew me away, but I couldn't have said it better myself.

Yup. Just look at him now. Look at them now.

Now I have new memories of 5324. Although I will never forget what happened in that room on April 22, 2009, I do not have to be afraid of it anymore. I do not have to shy away from it and let it keep me from meeting with families, as I know I'm being called to do. I have sweet, sweet victory over that room.

And Ethan? Victory at its finest. He left 5324 on the brink of death, and walked back into it full of life. God has protected his mind and restored his heart, and it just doesn't get much better than that.

Man, oh man, just look at him now.

Wednesday, April 6, 2011


Poor Ethan is so confused. And, I'm not talking about the I'm-two-and-I'm-trying-to-figure-out-the-world confusion, either.

As a family, we have celebrated eight birthdays in two months, and we've got a double birthday party this month! "Cupcake" is his new favorite word, and he squeals "Happy Birthday!" when he spots a balloon in a grocery store. Celebrating the day of birth is his new normal; he has come to expect it.

In fact, there was an entire week in March when he would wake up and say, "Happy birthday, {insert name of the most recent birthday boy/girl here} !", then come downstairs and ask for cupcakes. It's all pretty dang cute from my viewpoint, but I'm sure he's just a little disappointed when he has to settle for french toast.

I've thoroughly enjoyed all of these birthday celebrations, too! Young or old, it's always fun to watch the excitement in someone who knows that day is just for them. I entered into the last year of my twenties a couple of weeks ago, and my boys did such a great job making me feel loved! See?

Who wouldn't love waking up to a super cute video like that, then being surprised by your husband who was standing outside with flowers? Not to mention it all happening after a night of great food and being serenaded on the lawn of the State Capitol building...

I'm a lucky gal, I tell ya.

Oh! Let's not forget about the framed picture of Bon Jovi, taken by the band's photographer on the night they rocked out the RBC Center. {sigh}

Thanks to everyone else who made my day so special. I am blessed, indeed, and I have a feeling twenty-nine is going to be a very good year.

Related Posts Plugin for WordPress, Blogger...