Fevers, and Naps, and Jobs ...OH MY!

I'm currently sitting in my living room, listening to an agitated baby on the monitor. A baby who should be sound asleep, dreaming of squash and bananas. But, instead, he's flailing around in his crib and sounding something like this guy:

This would be the same baby who felt a little warm after waking up from his "nap" (we'll get to that in a minute) earlier this afternoon, and ended up with a temperature of 101.6.

What in the heck is it with my son and these random fevers?!

I'm suspecting an ear infection, or some sort of viral infection. The latter would probably make me look up to the sky and just chuckle, considering we've basically kept Ethan quarantined since leaving Duke a week ago. So, we'll take a trip to the pediatrician tomorrow and hopefully figure out what's up.

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Now, about this nap thing. Ethan had just started to nap, in a somewhat routine form, before his surgery 2 weeks ago. He would almost always take a nap sometime in the morning, and again in the afternoon, for about 1-2 hours each time. Now, nap-time is SO confusing.

He goes down pretty consistently in the morning around 10:00 and sleeps for 45 minutes-1 hour. He wakes up, somewhat happy and rested, but gets fussy and tired 30-45 minutes later. So, I put him back down, and he sleeps for another 45 minutes or so. In my mind, he just shouldn't wake up for those 30-45 minutes. But he does, and I can't figure out what to do about it. The afternoon is a whole other story...

I'm currently reading The No-Cry Nap Solution and it has some pretty good ideas. But, let me ask y'all... any good advice for nap-time? I know some babies are "catnappers" and can function off of shorter naps, but not my son. It's obvious that he needs more sleep than he's currently getting during the day!

Exhibit A: Falling asleep, mid-playtime

If only I were home with him all day, everyday to settle into some sort of routine...

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And speaking of, I'm feeling a strong desire to be a stay-at-home mama. In my ideal world, I would work part-time in the mornings and be home all afternoon and evening. Jeramie and I are starting to have some conversations about what it would take for that to happen. I tend to "think big", so if y'all start hearing me talk about selling our house and moving to the country, feel free to smile and nod, but realize I'm about 82% serious.

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Keep prayin' for us, please. It seems like we have a lot on our plate right now, and I'm already feeling kinda full.

Pictures!

Hey y'all ... I just spent some time updating our Flickr site. Go there to see more pictures of this handsome little thing:

Where is God When Life Happens?

This is the question that our pastor, Jeff, asks each year during one of my favorite series. He interviews different people in our community who have worked to find God in the midst of difficult situations. I love hearing other people's stories, and how God has used those stories for His glory.

Jeramie and I had the opportunity to share Ethan's story. It was so therapeutic to speak about our journey over the past 6 months, and I was happy to have the opportunity to publicly thank our community for the crazy amount of love and support we've been shown.

Many of you have requested the link, and I aim to please! You can go here and then click on "download"; it's about an hour long.

Happy listening.

Updates from Home

We've been home for about 24 hours and, man, are we tired! It seems as though Ethan is still a little sore, so we're doing our best to manage that with Tylenol every 4 hours. There are also times when he just loses his mind and nothing really seems to help. He's not sleeping very well, and I can only imagine it's because he's more than a little uncomfortable.

But then, there are times when he is as happy as can be. His personality is still intact, and it doesn't appear that his gross motor skills were compromised; thank you, Lord! We are thankful to be at home this quickly, but it comes with a completely different set of concerns.

I worry about how I handle him; am I picking him up the right way? Does it hurt when I hold him a certain way? I worry about his oxygen level when he gets really mad and holds his breath. I worry about the way his tiny heart is functioning in his body. Is it beating properly? Is his pacemaker still functioning the way we want it to be? I worry about whether or not he's perfusing well; I check his capillary refill with every diaper change. I constantly check on him while he's sleeping, but then I worry if I'm going to wake him up when I open the door. I worry about his incisions and the stitches where his chest tubes were; do his clothes rub against the raised skin, causing even more irritation?

So, as you can imagine, I'm in need of some peace of mind; and we could all use some really good sleep! I'll be staying at home this week, at least, until Ethan's cleared to go back to Mandy's. Until then, I'll be loving on, playing with, and, of course, worrying about my little boy. Keep on praying for and encouraging us; it helps more than y'all know!

HOME!

Ethan was discharged around 11:00 this morning, and we were leaving Duke by 11:45! It feels so good to be back in our house, and Ethan is doing GREAT!

I'm still in shock that he had open heart surgery not even a week ago, and we're home right now; God is so, so good.

Please pray that this coming week will be "drama-free". We'll be watching him closely for any problems that might arise, but we expect that he'll continue to do well. Thank you for your prayers up to this point, and for the calls, messages, and e-mails. We've, again, been blown away by what a great group of friends and family we have!

Also, keep checking our Flickr site. I've already started to upload a bunch of pictures, and there will be more to come soon. For now, I'll leave you with probably my favorite picture of the past 6 days ... enjoy!

Moving Out

Well, Ethan moved out of the PCICU today! He remained stable overnight last night and took a trip to room 5307 around 10:30 this morning. However, Ethan doesn't do anything without a little bit of drama. Once we got to step-down, the nurse was assessing him and realized he felt a little warm. Sure enough, he had spiked another fever. We think she caught it right away, because after a dose of Tylenol and some cold packs, he was back to normal.

Unfortunately, that wasn't before the doctor ordered more blood cultures, which meant another stick. AND, if anything gets this mama fired up, its someone who has NO CLUE what they're doing while TRYING to draw blood from my baby. After about 30 minutes, a NP from the ICU came over and got it on the first try. Reason #84 why I wish we could be discharged straight from there. Anyway...I digress.

So, here we are in step-down, hoping to go "you know where" by Sunday or Monday. Ethan's still on a little bit of oxygen, which wasn't the case the last time we left the ICU. I don't know if I'm just being overly worried, but I'm praying that he can be weaned from it and still maintain good oxygen saturations; y'all can be praying for that as well.

Otherwise, he's doing well. He had a sedated echo today, so he's still a little groggy from that. The results showed that the new pacemaker is helping to create a more normal rhythm between the ventricles, which is exactly what we were hoping for. The right ventricle still looks "stressed", but that's to be expected after surgery. Continue to pray that the function would return and this new conduit will last a very long time.

Speaking of the conduit, Dr. J decided to use something called a Contegra Conduit. Given that it works as it should, Ethan won't need another heart surgery for 4-8 years! This is HUGE!!

So, keep praying. Jeramie and I are already starting to feel the stress of being cramped up in a tiny room. I would say it's even worse than last time, since we don't have an actual bed to sleep on this go 'round. I'll be taking the recliner in the corner, and Jeramie will be on a couple of egg-crates in the floor.

Come on Sunday, sweet Sunday.

Update

Hey y'all. I realized it's been a few days since I've posted anything here; time is going by SO quickly, and I am SO exhausted. I think about posting something, but then I find a way to summarize it into 140 characters or less on Twitter! Oh well...

Ethan is doing well. He came through surgery like a champ and was extubated early yesterday morning. Things had been pretty uneventful over the past 2 days, and the plan was to move him out of ICU sometime today. However, last night he started to have some trouble breathing and spiked a pretty high fever. The ICU fellow called us around 3:00 a.m. to tell us that Ethan was going on nasal CPAP, with the possibility of being re-intubated. We prayed hard that he could avoid that, and he did! He came off of CPAP around noon and is now sporting a high-flow nasal canula. This is providing a pretty good amount of oxygen, which is what he seems to need right now. He is breathing MUCH easier and just looks way more comfortable than he did yesterday.

We found out about his fever when we called to check-in around 6:00 this morning; it had spiked not long before we called. Blood was drawn and sent to the lab to see if anything would grow to suggest infection. His temp hovered around 103-104 for most of the morning, and FINALLY broke around 2:00 this afternoon. As of then, he's been fever-free. Thank you, Lord!

He took a really nice nap this afternoon, and was drifting off to dreamland when Jeramie and I left tonight. Please continue to pray that his temperature would remain normal and there would be no signs of infection. Pray that his lungs would strengthen and will be able to tolerate lower amounts of oxygen.

We'll probably be in the ICU for at least one more day/night, if not a little longer. We've learned not to rush him, so we'll just keep on waiting until he's ready.

Thank you for all of the prayers & support y'all have given us this week; we truly appreciate it more than we can say!

This is the Day

After a couple of tearful talks with God yesterday, and a 4 am snuggle session this morning, I'm feeling OK. Not great, but OK.

We'll be leaving in a few minutes to take Ethan to Duke. I'm praying his surgery starts sooner rather than later. He last ate at 3:00 this morning, and won't eat again until all this is over ... and then some. He's been a very happy baby all weekend, including this morning. That is a blessing in and of itself. We've had lots of good family time, and he's definitely enjoyed all the attention.

Thank you for all of your prayers so far. I'm praying for God's peace to cover us all, and ask that y'all do the same. It's going to be a very long day, and I'll do my best to update everyone through Twitter/Facebook and the blog.

I came across this verse yesterday and the irony of it all struck me:

This is the day the LORD has made;
let us rejoice and be glad in it.
-Psalm 118:24

So, I will attempt to rejoice in such a dreadful day, knowing that it's God's day; the same God who knows everything about it already, and the One who is holding my sweet baby boy in His great big hands.

Surgery Update

Well, we took Ethan to Duke today for his pre-op appointment in preparation for Monday's surgery. He did fantastic, even through all the poking, prodding, and lack of sleep!

Side note: he's a whopping 18 pounds, which puts him in the 50th percentile for weight ... gotta love that Nissen!

Anyway, we spent some time talking with Dr. J about his plans for the surgery. Long story short, he plans to replace the homograft (the "pipe") going from Ethan's right ventricle into his pulmonary artery. There is also talk about potentially modifying his pacemaker and/or replacing it all together. Not because of any problems with it, but to make it a little more effective in replicating the natural rhythm of the heart.

We're encouraged. Everyone who saw him (and we saw a lot of people), whether they were just visiting or doing the poking and prodding, commented on how great he looked. They couldn't get over how much he had grown, and Dr. J was pleased with that, as well. To think about him performing this surgery on Ethan when he was only 6 pounds and 3 days old is simply amazing. To imagine Dr. J repeating the same surgery, basically, 4 months and 12 pounds later, is encouraging (and still amazing...)

Ethan's on the schedule for 11:30 Monday morning. We're to be there at 9:30, and he'll be taken back around 10:00 or 10:30 to get prepped for surgery. Please continue to pray for us, Dr. J, and the nurses. Pray that Ethan would stay well over the weekend; that this little bit of congestion won't progress into anything more.

I did well, emotionally, today. The anxiety has lifted a little, but I'm still feeling restless. We have a fun-filled couple of days coming up, full of family time and loving on our little boy, which will definitely be good for the soul.

We love y'all, and we're already feeling the effects of just how much y'all love us. Thanks for that.

1/2 a Year Old!!

Happy 6-month birthday, Ethan!

I love you so very much.

DISCLAIMER: This video documents Ethan's journey from birth, until now. There are a couple of graphic images that are not suitable for little eyes.

Our Little Miracle from Joye Mullis on Vimeo.

I'm Not Fine

In exactly one week, Ethan will be recovering from his 2nd open heart surgery. We found out last week that we are on the schedule for Monday, September 14.

If you had asked me last week how I was doing with the news, I would have said "fine". But now, I am far from it. The "what ifs" have gotten the best of me, and I'm beginning to feel the anxiety weigh down my soul. I have no idea what to expect. Our first experience with heart surgery was such a shock and so NOT planned, that I don't know how to "plan" to send my son into the OR for yet another surgery.

I imagine that this will be a different kind of hard. Before, it was hard to see my newborn baby in such a fragile state. It was hard to not be able to hold him, or to do all those normal baby things. Now, I know him. I know his schedule, his likes, what to do to make him stop crying. I think I'm already grieving the temporary loss of those things. How will we keep his inquisitive hands from pulling at all of those tubes and wires? How will I be able to see him laying so still in a hospital bed, knowing how active he's capable of being?

I'm afraid that he'll backtrack developmentally. He's made SO much progress over the past 4 months (and especially in the past couple of weeks); so I pray that God will preserve that for him. I wonder if those same eyes that seemed to convey "why, Mama?" last time will be even harder to look into this time.

I pray that this surgery will be successful, and the recovery will be quick. I pray that we would avoid any complications that can come along. I pray for Dr. J, who's skilled hands will be handling Ethan's heart, and I pray for the nurses and doctors who will take care of him along the way. I pray that Jeramie and I will be strong by Ethan's side, but be real with our emotions amongst ourselves, and with family and friends.

I'm thankful for God's mercies that are new every day; but, don't let me lie to you. I am not fine.

Preserving Memories

Tonight, Jeramie and I found out about the passing of one of our heart friends. Jack was an incredibly special little boy and was about a month or so older than Ethan. Jack & Ethan were roommates for a couple of weeks and this allowed us, and Jack's parents, to form a friendship that will not be soon forgotten.

Tonight, I am completely heartbroken. I cry for Jack's mama & daddy, for his older brother, for his twin sister. I cry for the numerous family, friends, nurses, and doctors who loved on and cared for this little boy. I cry because I'm reminded of the other babies who have gone on before us.

Tonight, I promised another family that their little boy would live on in our hearts forever. I promise that Ethan will always know of his first friends, whether they be here on this Earth or not.

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All of this got Jeramie and me thinking about how we can preserve such tender memories. Sure, we have thousands of pictures, and this blog will document my thoughts and emotions along the way. But how will Ethan remember those people who have impacted our lives so greatly? We've started small, and set up an e-mail account for him.

Right now, this will be a way Jeramie and I can send letters to tell him about what an amazing life he's had. We can tell him all about Jack, Lucca, & Trevor, and make sure he always knows about these incredible boys. And, if you feel so inclined, you can e-mail him too (ethankendrickmullis@gmail.com). I've received HUNDREDS of e-mails, Facebook messages, and blog comments from y'all in the past 6 months ... and I've saved every. single. one. I plan to forward these to Ethan's e-mail account and keep them organized there.

So, it's a start. I pray that Ethan will read these letters and messages one day and not only realize how amazing he is, but how important others have been to our story.

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Rest in peace, sweet baby Jack. We'll see you later.

Photo Booth

We Made It!

In more ways than one, we made it. We made it to Duke, on time, EARLY yesterday morning. Ethan made it through the heart cath. We made it through another night in an itty bitty hospital room. Ethan made a purple hospital gown look good:


And, most importantly, we made it home (all within 30 hours, might I add...)

Overall, the procedure was a huge success. Ethan's cold had cleared up significantly, and everyone was pleased with his condition this time around. The folks in the cath lab were able to get all the necessary information (and then some), and they even attempted to intervene. Unfortunately, the intervention (ballooning open the artery) didn't work as we had hoped. This, paired with the current state of Ethan's heart, has landed us a spot in the OR in the next few weeks.

I can't say that I'm shocked, but I am a little surprised. We all knew it was coming; I just don't think anyone was expecting it to be this soon. I was totally hopeful and encouraged when we got word they were trying the balloon. I just assumed it would work, so to find out that it didn't came as a bit of a blow. BUT, we also know that surgery will give Ethan the best outcome; and, whereas surgery isn't necessarily ideal, the situation is about as good as it can be. The pictures they got yesterday will give Ethan's surgeon all the info he needs to go in and correct what needs to be corrected. And that's it. Although it is open heart surgery, it shouldn't be nearly as complicated as the first one.

So, over these next few weeks, think good thoughts, cross your fingers and toes, and pray fervently on Ethan's behalf! We need him to stay healthy, and Jeramie and I need to prepare our hearts and minds for something that seems so dreadful, yet way too familiar.