Prayers Wanted

Hey y'all. I'm going to take a little break from updating about Ethan, and ask y'all to pray for the family of a very good friend of mine.

Jesse & I grew up together; she was one of my best friends in high school and we've managed to remain close throughout the years.

Jesse has a sister named Jennie, who is just a couple of years younger than my sister. Yesterday, Jennie was in a very serious car wreck in Wilmington. She was admitted to the ICU and underwent emergency surgery to try to help control bleeding and lower the pressure in her brain.

As of this morning, Jennie's intracranial pressure (ICP) was still very high; normal range is below 20, and the pressure in Jennie's brain has been well above 100 at times. She was unresponsive, and her pain meds had been turned off in order to hopefully stimulate some responses from her.

Early this afternoon, Jennie's breathing tube was removed to see if she would initiate breaths on her own. Thankfully, she took two breaths!! The last update I received is that Jennie's brain showed activity in response to pain. These are both steps in the right direction, however Jennie is still in very serious condition and needs lots and lots of prayer.

I asked Jesse what we could specifically pray for at this point, and she said that Jennie's ICP is still high and needs to come down. I don't know about you but, more than ever, I believe in the power of prayer and know that God is still in the miracle-making business. I have been deep in prayer and thought over the past 24 hours, heartbroken and begging God to let Jennie hang on.

I would love it if you would you join me in praying for a family that is so close to my heart.

Thankful

Today, there are so many things to be thankful for.

Jeramie, Ethan, and I were able to drive to my parents' house in a reliable car. We have a house, and the money we need to pay our bills. We have supportive family and friends, and jobs that we (for the most part) enjoy.

But, today, I am feeling most thankful for my son's life.




I am thankful that he is alive and well, able to celebrate his first Thanksgiving. I am thankful for the nurse at Rex who first noticed that something "just didn't look right". I am thankful that we live so close to Duke, and that Ethan began receiving top-notch care so quickly. I am thankful for Dr. Jaggers' skilled hands, and his God-given ability to save Ethan's life. I am thankful for the nurses in the PCICU who loved on and cared for Ethan at a time when Jeramie and I were not able to. Words can't even express the gratitude I feel for the 3 people who performed CPR on Ethan for 11 grueling minutes when his heart suddenly stopped.

I don't even know what I would do if I ever got all of those people in the same room. I've been able to thank most of them on an individual basis, and I hope the others know that what they do every single day means the world to this family of broken hearts.

Lord, thank you for our miracle. Thank you for allowing us to see life through a new lens. Thank you for every single moment we're able to share with our son. Thank you for loving us in a way I still don't understand.

We are so thankful.

Swallow Study = Success!

Thank y'all, so much, for the prayers and encouraging words you sent our way for this morning! I had a lot of anxiety about taking Ethan to an appointment at Duke by myself. There's just so much to coordinate and consider, and having two people really does make a difference!


God was definitely smiling down on us, though. Ethan played & "talked" the entire way to Durham, I found a prime parking a spot right in front of the elevators, and check-in was a breeze since it was so early. We waited a bit longer than I had expected to, but Ethan wasn't bothered at all by the fact he hadn't slept or eaten. Then, when we were finally called back, I realized our favorite Duke speech therapist would be performing the study; that was like icing on the cake!

We talked for a bit about Ethan's current oral feeding regimen, then went down to radiology for the study. It was so comforting to be with someone who already knew Ethan and his quirky eating ways; she was so patient and loving with him!

For the study, she mixed some squash with the barium to see how he would do with that consistency. It took some time, and a little coaxing, to get Ethan to actually swallow the stuff but he eventually did it! He didn't hold back from letting us know how mad he was about it, though.

After the radiologist got some pictures of those first few swallows, we moved to liquid barium. Neither the speech therapist or I thought it was going to go well, given the fact he was SO upset at that point. Ethan surprised us, though, and took some from his sippy cup. The radiologist was able to get pictures of 3 different swallows that time! I will say that I was a little concerned because Ethan started "sputtering" and his cries sounded gurggly afterwards. Both of those things are prime indicators of aspiration, and I just knew he had sucked the liquid into his lungs. However, after looking at the pictures, both the speech therapist and radiologist agreed that he did NOT aspirate!

Y'all, that is HUGE!

Even through all the crying and kicking, he managed to protect his airway and swallow the liquid appropriately. We were all very pleased to see that! And, it reassured me that when he coughs, gags, and sputters at home he is most likely not aspirating his food!

So, now what?

The speech therapist recommended that we move ahead, with caution. Given that Ethan did not aspirate the thin liquid, we are free to offer him all different types of textures and consistencies, which we will do under the guidance of our incredible speech therapist here in Raleigh. Dr. H will look at the results of the study and decide his course of action for the (possible) removal of Ethan's adenoids. Jeramie and I will continue to work on oral feeds at home and watch for any seriously obvious signs of aspiration.

And Ethan? He'll keep blowing raspberries, clapping his hands, and being the oh-so-adorable eight month old baby that he is.

Just the way we like it.

Updates, Pictures, and Wanted Prayers

Ethan has been spending a lot of time with his daddy this weekend! I love seeing the two of them interact, especially when it involves the guitar. Take a peek at Ethan practicing his skills:

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On Wednesday, I'm taking Ethan to Duke for a swallow study. I took him to the ear, nose, and throat doctor about a week ago, and it seems as though his adenoids need to be removed.

Before Dr. H moves forward with a surgery, he would like to gain a little more information about the anatomy of Ethan's airway/esophagus/nasal passages. If Ethan participates, we will be able to see whether or not any of the Barium solution (which will be the consistency of baby food) penetrates his airway, or goes up into his nose. "Participate" means Ethan will allow the speech therapist to put some of this solution into his mouth, he'll swallow it, then repeat. A radiologist will be taking pictures through the whole process to watch what happens if Ethan eats the mixture.

The last time we took Ethan in for a swallow study he wasn't ready, and we have questions as to whether he's ready now. He's been doing much better on the eating front lately, but he's still not taking large quantities by mouth. Will y'all pray that he would show off for us on Wednesday? Not only will this give Dr. H some useful information, but it could also give us a few hints as to why eating solids is somewhat of a struggle. I will be absolutely thrilled if Wednesday morning goes well, and probably pretty upset if it doesn't.

Not to mention it will be just me and Ethan, in the middle of his morning nap, forcing nasty Barium down his throat. That could be ugly.

So, say some prayers, think good thoughts, and wish us luck for Wednesday. I'll be sure to let y'all know how it goes.

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Have I mentioned that Ethan is now the proud angry owner of SIX pearly whites?! He's coping with these new creatures in his mouth by grinding his teeth. It sounds absolutely awful and I can't figure out how to make him stop. Has anyone experienced this before in babies? Any advice??

And (sort of) speaking of developmental milestones, Ethan has rolled over onto his stomach in his sleep the past few nights. He usually wakes us up, screaming to be turned over, but not last night! Jeramie walked in around 6:45 this morning to find him sound asleep on his tummy. He looked so freakin' cute, I could hardly stand it. Maybe, just maybe, we're turning a corner....

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Alright y'all, that's all for now. Until next time....

Mr. November

Check out our calendar boy! Can you find him??


(Hint: old blog header)

This calendar was created by an organization that we have come to love. They helped coordinate the symposium that Jeramie and I attended back in July, and they sent an awesome care package to Ethan while he was at Duke for his 2nd surgery.

"Saving Little Hearts" uses proceeds from their merchandise to benefit children with congenital heart defects. In just 8 months my family has, no doubt, been blessed by this organization!

Go here to purchase a calendar for yourself, and check out some of their other goods while you're at it!

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And don't forget: Red & Blue Day is Sunday, November 29. Show your support of those living with Congenital Heart Defects by wearing red & blue. E-mail pictures to ethankendrickmullis@gmail.com! You can also contact my sister, Jessi, if you're interested in wearing a CHD ribbon!

Cardiology Check-Up

Wow.

When I think about the past 4 hours, all I can say is "wow". We spent most of the morning and early afternoon with our beloved cardiologist, and we really couldn't have gotten better news than we did.

(Well, I guess he could have told us that Ethan's heart had miraculously healed itself... but we'll leave that one up to God.)

Anyway... today was a big day. Ethan had a chest x-ray, an EKG, a "naturally sedated" echo (he fell asleep right before it!), and a crazy long pacemaker interrogation session. He slept for about 45 minutes while everyone worked on him, and was in great spirits during the time he was awake. Dr. I was thrilled with how he looked (big, pink, and full of energy) and said his heart sounded "fantastic".

That never gets old.

The best news came during Ethan's echo when we were told that the right ventricle is functioning "very well". If you remember, this is the part of his heart that has had a really hard time rebounding from surgery #1, cardiac arrest, then surgery #2. In the past, it hadn't been squeezing as well as it should be, but that was NOT the case today!! In relative terms, the difference is night and day.

It was so much better, in fact, that Dr. I stopped one of Ethan's heart medications! Stopped it. He also decreased the frequency of another medication, with the intention of stopping it soon, too.

Wow.

He will be keeping an eye on Ethan's conduit to make sure that the pressures don't start creeping up again. There is a slight narrowing, but nothing to suggest a problem at this point. Pray that this past surgery will last well into Ethan's early childhood years, meaning that the conduit will stay opened-wide, allowing for the most optimal blood flow from his heart to his lungs.

As if we didn't get enough good news, our visit ended with a very loving "see you in two months". Two months?! We've not gone longer than four weeks since leaving Duke in May, but I'll take it! Lord willing, we won't see Dr. I (or any of his colleagues) for the rest of 2009.

Happy new year, our cardiology friends. We'll see you in 2010.

Bath Time!

Giving Ethan a bath is finally becoming a little easier. I was beginning to feel like my friend, Meg, with all the various bath seats we have in our house. Tonight, though, we found a winner!

Here is proof of our first-ever, 100% successful, bath experience.

My Tank is Full

Tonight, my heart is happy.

Even though I started my day by waking up late, dropping a spoon into my to-go cup of coffee, reaching into said cup of (hot) coffee to get the spoon out, burning my fingers, then finally deciding to use a pair of tongs to retrieve the sunken piece of silver, I still had a feeling it would be a good day.

Actually, I think I said it would be awesome. And it was.

My kids were (mostly) in a great mood and I was able to get a lot accomplished during my lunch & planning periods.

Then, Ethan rocked it out at feeding therapy. He took a mixture of baby oatmeal and mashed bananas, and I may even venture to say that he liked it!


After that, we put up our germ-shield and took a family trip to Durham. We walked into Babies R Us, and walked out about 45 minutes later with 1 convertible car seat, 2 cans of formula, and 1 shopping cart/highchair cover. We managed to save $50, which was kind of like getting the formula for free!

As if braving a baby superstore wasn't enough, we went a little further and met some sweet friends at Chili's for dinner. Yes, it was approaching Ethan's bed time and, yes, I freaked when he leaned over the high chair and began sucking on the edge of the table, but the time spent with Rob & Charlotte was well worth it! To be with people who can go from laughing about a "Code Brown" to crying about leaving your child in the OR, on the operating table, is irreplaceable. This type of friendship, and that level of conversation, refreshes my soul.


On the way home, I sat in the backseat with Ethan and watched as he so peacefully drifted off to sleep. I thanked God for my family, my job, and good friends.

I am thankful that, tonight, my heart is happy... my tank is full... and life, at this very moment, is grand.

8 Months Later

Today, my precious son is 8 months old.


This has been the first time, since his birth, that the 8th has fallen on a Sunday. There was just something about him being 8 months old, on Sunday the 8th, that seemed a little extra special and emotional.

We listened to "Our Hope Endures" on the drive back to Raleigh today and I was flooded with memories. It was about 3:15 and I remember thinking that at that time, exactly 8 months ago, we were visiting Ethan in the Special Care Nursery at Rex, just beginning to learn about his heart defect.

It's absolutely crazy the amount of knowledge we have acquired in such a short time. The amount of love that has filled my heart is even crazier! I am completely thankful, everyday, that God has allowed me to know this kind of love.

In honor of his "golden-month" birthday, I thought I would share 8 fun facts about our (literally) bouncy baby boy:

1. His favorite toy is the plunger to a 60 mL syringe.
2. He has just learned to clap his hands, and does it all. the. time.
3. As of last Friday, he is 11 ounces away from 22 pounds. This means a new car seat is in our immediate future.
4. He talks to Annie and REALLY wants to play with her. He's not really aware of the fact that she's more than put-off about his presence in her house.
5. That 3rd tooth is FINALLY making its way through his so very stubborn gums.
6. He can roll over from front to back and sit-up, independently.
7. He doesn't seem to care for too many baby foods, but has taken a strong liking to my mama's homemade sweets. (I'd rather not elaborate on how we've come to that conclusion.)
8. His chunky thighs are so very ticklish, as is his neck!

The list could go on and on, and I am excited about what the next few months have in store. I look forward to learning about, and loving on, my amazing little boy!

Happy 8-month birthday, Ethan. We love you.

Hair Today, Gone Tomorrow

BEFORE:

AFTER:

(There's a slight angle, from the back to the front, that you can't see because of the turtleneck. Oh well. You get the idea!)

Thanks to my amazing sister, Jessi, for always figuring out how to manage this wild mane!

CHD Ribbons!!

I realize not everyone reads through the comments on each post, but I wanted to make sure this one didn't go unnoticed! My sister has spent some time creating A LOT of these:

Aren't they cute?!

Here is what she said in the comments of my previous post:

"To anyone who's interested, I've made some super cute little ribbons that pin onto your shirt that have little red hearts on them! I'll send them to you for free to show your support! Just e-mail me if you're interested! j.day86@yahoo.com"

Thank you, Jessi! You are the best sister a girl could ask for, and the best aunt EVER!

Remember to wear red & blue on Sunday, November 29 and send pictures to: ethankendrickmullis@gmail.com!!

Audience Participation

If you're real observant, you may have noticed a couple of additions to the blog. The first of those is in regards to "Red & Blue Day". On Sunday, November 29, we're asking that you wear red and blue to show your support of children and adults living with congenital heart defects! Did you know that 1 out of every 125 infants are born with heart defects each year in the United States?

Like Ethan, many of those babies will undergo intense open-heart surgery while only being hours or days old. You already know what a fighter Ethan is, and this blog has introduced you to other amazing children who are fighting right alongside him!

So, mark you calendar and show your support!

AND... you may have also noticed that I added Ethan's e-mail address right under the "Praying for Ethan" button. A while back I mentioned that we set up an e-mail account for him, as a way to tell him all about his journey.

Now, it's your turn!

On November 29, take pictures, videos, etc. of you and/or your family decked out in red & blue. Send them to Ethan at ethankendrickmullis@gmail.com and give him lots to look at when he's old enough to figure this stuff out!

(My plan is to compile all of the responses into a Blurb photo book. How cool will that be?!)

Get those creative juices flowing, and have FUN!