Monday, March 30, 2009

Ethan's New Crib

I am writing from room 5317, our new home! I went back to see Ethan at my usual time yesterday morning to find him all ready to go. We wheeled him down around 10:00 a.m. and we've been hanging out ever since!

I didn't expect to feel so many emotions with the move. I was excited to be going to a private room where we can spend as much time as we want with him. I was proud of the progress he's made. I was thankful. I was scared to be responsible for more of his care. I was sad to leave the PCICU and the wonderful nurses there. I cried, a lot.

It's probably harder now that Jeramie's back at work. I still don't feel lonely, just a little overwhelmed with being in the room alone with Ethan. The nurses are great, but the patient to nurse ratio is higher now that we're on the floor. I'm used to his nurse sitting beside his bed and reacting to his every move. I know this is preparing us to be at home with him, and I'm thankful for that, it's just a harder adjustment than I had imagined.

Ethan is doing really well, though! He had a great night last night and has been sleeping most of the morning. It's so fun to just be able to pick him up and hold him whenever I want. Feel free to come by and visit us; just make sure you call before you come. I plan to take full advantage of this bed beside my little man!

Thanks for all of the encouragement and well wishes on the new room! Continue to pray....we're still not home yet!!

Big Day Ahead

Today is the day we move to our new room! Ethan had an excellent day and night yesterday, so we're headed to our "big boy room" sometime today. Yesterday afternoon he came off of the nasal canula and has been breathing room air just like you and me ever since! His nurses have called him "stellar" and we totally agree :) Stay tuned for our new location... we can't wait for y'all to come see our little miracle for yourself!

Pray that Ethan continues to do so well without the oxygen, and that today's move will be a smooth transition for all involved. We love y'all!

Sunday, March 29, 2009

Bye Bye Blue Monster!

It's official; the Blue Monster has gone away! We called in this morning to see how Ethan did over night and the nurse informed us that he was taken off of CPAP around 1:00 a.m. Needless to say, we were super excited to get to the hospital and see our sweet baby's face! He's currently on the nasal canula that is supplying some pressure/air flow and a little bit of oxygen. His oxygen saturation levels (sats) look great, which means he's tolerating the canula very well!

The plan for today is to continue to monitor progress, and to start weaning down the pressure and oxygen levels of the canula. He'll be monitored for 24 hours in the cardiac unit and, if all goes well, we'll go to a step-down room TOMORROW!! :) When that happens, I'll be sure to post our new room info on here so that you guys can come see our little man.

We're thrilled, but also keeping in mind some of the best advice we've gotten since we've been here: "Don't get too high on the highs or too low on the lows." Thank you for all of your prayers up to this point, but please keep them coming! We're praying for a successful day with the canula and that Ethan continues to grow stronger and stronger!

Oh, and happy 3-week birthday to our sweet baby boy :) We love y'all!

Saturday, March 28, 2009


Ethan has had a great couple of days! He has tolerated the CPAP well and only gets mad when it's time to change out the tube. This makes for great video of him crying, though! Speaking of, those vocal cords are warming up and his cries are getting louder and louder; I LOVE it!!

I was also able to spend another hour or so holding him yesterday. He was awake for most of it and held my gaze about 90% of the time. I rocked him to sleep while singing "Amazing Grace" and then it was back to bed. It was such sweet mommy/Ethan time!

When we came in this morning the CPAP pressure had been turned down to 5! If you remember from my previous post, a pressure of 5 or 6 is where we need to be in order to get rid of the Blue Monster. It looks like we're there! Of course, it all depends on how well Ethan tolerates this small amount of pressure. They'll look at his blood gas levels, whether he's having any desaturations, and his chest x-ray. Those 3 things will determine if he can come off of CPAP sometime today. We definitely don't want to rush him, but it would be so nice if we can get rid of this machine for good! Pray that Ethan's lungs would be stronger than ever, and that he would have the stamina to continue breathing on his own.

On a different note, Baby Trevor's memorial service is in 15 minutes (11:00 a.m.) Please lift up Torrey, Jodi, and their families as they prepare for such a difficult day.

We love y'all, and are so thankful for the prayers you're sending up on behalf of our son, and all the friends we've made along the way!

Thursday, March 26, 2009

Baby Trevor

Hey friends. This is not going to be a typical "Ethan Update". Jeramie and I just learned of the passing of Baby Trevor, and I'm coming here to express my heartbreak and to ask for more prayers.

Trevor's mama and daddy (Torrey and Jodi) were in our birthing class at Rex and we happened to see them here at Duke during our first days with Ethan. Trevor was born the day after Ethan, with a kidney disease that caused his lungs to not develop properly. We spent many days celebrating his small victories, and he surprised the doctors and nurses on many occasions. He made progress that was not expected for his condition and his sweet mama was able to spend many hours holding and loving on him before he passed.

Though we are thankful for the days he spent here, it's completely heartbreaking to know that he was taken away so soon. Please pray for Torrey, Jodi, and their entire families. Pray that they would feel a comfort and peace that only God can provide.

Jodi and Torrey: we love you guys and wish we could be there with you. Know that our thoughts and prayers are with you and your entire family.

A Minor Setback

Last night around 12:10 I got a phone call from Ethan's nurse; this is not exactly how I like to be woken up in the middle of the night! She was calling to tell us that Ethan had been having some desaturations (low oxygen levels) and was struggling to breathe. They tried to stimulate him and get his levels up, but it didn't work. In the end, Ethan ended up going onto CPAP.

This is not full ventilation like he was on, but it's supplied by the same machine (which I'm lovingly referring to as the Blue Monster). It's basically a small tube that goes into his nose and stops just short of his vocal cords (so we can still hear that sweet raspy cry!) It supplies a little bit of pressure to keep his lungs open, and some additional oxygen as well. It is much less invasive than the vent, and the goal is to get him off of it today. His pressure level is currently set to 9, and it needs to get down to 5 or 6 before he can come off. They also need to watch him to make sure he's not having a hard time breathing and that his oxygen levels are staying where they should be.

We need your loud and mighty prayers again today! Pray that Ethan's lungs would strengthen so that we can get rid of the CPAP and back onto the nasal canula. Pray that he would continue to cough up the junk in his lungs as this will improve his oxygen levels. Pray that the team of doctors and nurses will make the best decisions possible for our little boy. The sooner we can get him stable with breathing on his own, the sooner we can move to a step-down room, and the sooner we can go HOME!

This isn't the "end of the world" by no means, but just a small hurdle we need to jump! Thank you for praying; you guys are really good at this! :)

Wednesday, March 25, 2009

The Perfect Day

Aside from the day Ethan was born, yesterday was probably my favorite day! Not only did the tube come out (and stay out!), but I got another hour of cuddle time with my son. I shared him with Jeramie only because I had to go pump :) It was so nice to hold him without all the plastic! He still has the wires that are monitoring his heart rate, oxygen, blood pressure, and breathing rate, but those are simple to deal with compared to that tube!

I called this morning to see how he did over night and his nurse reported that he was great! She even sent a picture message to Jeramie's cell phone of him wide awake and sitting up!! He had NO apnea spells (thank God!!), but there were a few times his breathing was rapid. Pray that as his lungs begin to clear, this rapid breathing will resolve as well. It's going to take him coughing up the junk in his lungs in order to get to a more normal breathing pattern. As far as I know, he's still wearing the nasal canula, but it's possible that could come off today.

Ethan is also receiving Methadone and Valium right now, which is making him a very sleepy baby. These drugs are helping him "come down" from being on the Versed and Fentanyl for so long. The doses for these new drugs will become less and further apart until he is totally weaned off of them. The nurses joke that he's already had all the good stuff, so there's no need for him to try anything else when he gets older!

We are so proud of our son and the progress is making! We are thankful to serve such a huge God who hears the prayers of so many. We are thankful for the doctors and nurses who are helping and loving on our little man. We are thankful for YOU for following along and praying so faithfully.

Ethan's going to have another big day today; Grandma, Aunt Jessi, Great MaMaw, MawMaw, AND PawPaw are all coming to visit! I better go get in some snuggle time while I can...

Tuesday, March 24, 2009

It's OUT!!!!

Praise God from whom all blessings flow!!

Ethan has been extubated! The team came in around 5:00 this afternoon, and by 5:15 he was breathing on his own :) The tubes and machine are gone and he's left with only a nasal canula that's providing a little bit of oxygen. Jeramie and I just spent some time kissing all over his sweet face. I was expecting to walk in and hear that raspy cry, but he is sleeping soundly. We've taken a lot of pictures of his new look, and I'll be sure to get those posted as soon as I can.

THANK YOU for your prayers. God is SO good! Continue to pray hard. The night isn't over yet, and he still has to prove that he can do this; we believe he can! Stay tuned....

To Extubate, or Not??

Well, friends, these past two days have been pretty frustrating. Our little guy is still on the vent and is HATING it! The doctors were not able to extubate yesterday due to a few factors: 1) there is still some bloody secretion coming from the tube, 2) his chest x-ray showed a little bit of fluid in his lungs, and 3) Ethan's either knocked out, or ticked off. Finding the balance between keeping him awake, yet calm has been very difficult. He's also having some apnea spells that is a bit concerning. The doctors seem to think it's because he's too drugged, and not because he is "forgetting" to breathe. We're praying this will be resolved if/when they can get him totally off of medication. Do you see the catch 22 here?? He has a tube in his throat, he wakes up, he gets mad, he gets mildly sedated, he stops breathing, the doctors aren't comfortable extubating, the tube stays in .... over, and over, and over.

I feel so helpless when I walk in and see him so mad. I wish I could just yank that tube out myself! We need some serious prayers right now. Pray that God would totally wrap his arms around our little boy and comfort him in a way none of us can. Pray that these apnea spells would resolve. Pray for the doctors who are making tough decisions right now. Pray for Jeramie who is at work and would rather not be. Pray for me as I sit by Ethan's bed and feel so weak. We all need strength right now.

Pray, pray, pray.

Enjoying Holland

A friend and former co-worker sent me the following story. It was just what I needed at just the right time.
"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks, and make your wonderful'll see the Colosseum, works by Michelangelo, the gondolas in Venice. You learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, 'Welcome to Holland.'

'Holland?' you say. 'What do you mean, Holland? I signed up for Italy! All my life I've dreamed of going to Italy.'

But there has been a change in the flight plan. The plane has landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible is just a different place.

You must go out and buy a new guidebook. You must learn a whole new language and you will meet a whole new group of people you would have never met. Holland is slower paced than Italy, less flashy. But after you've been there for a while, been able to catch your breath, you look around, and you begin to notice that Holland has windmills, and beautiful tulips; Holland even has Rembrandt.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'

And the pain of that will never go away because the loss of that dream is very significant.

But if you spend your life mourning that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things about Holland."

Lord, help me love and enjoy this new place.

Monday, March 23, 2009

Quick Update

Happy Monday! This is going to be brief, but I wanted to make sure I let you guys know what's going on today. I just spent a couple of hours hanging out with Ethan and he slept the whole time! His nurse said he wasn't quite that nice last night and early this morning, however. The medications are completely out of his system, so when he is awake he is MAD. I'd have to imagine I would be pretty ticked off with a tube down my throat, too.

The plan is to extubate today. He is being watched very closely and is currently on a type of CPAP. This means he isn't fully ventilated, but is still receiving some pressure support to keep his lungs from collapsing. This is a step towards taking him off of the vent. I'm not exactly sure when they plan to extubate, so stay tuned! Pray, pray, pray that this time is a success. Pray the bleeding does not become problematic and that this tube can come out and stay out!

On a bit of a different note, my laptop is on the fritz so internet access is going to be a little more difficult to come by. I will try to update later on this afternoon if/when I can!

All our love,
-Joye, Jeramie, and Ethan

Sunday, March 22, 2009

Update on Ethan

I apologize for the lack of updates lately! I've started many different posts, but either didn't have time to finish them or couldn't find the words to explain what's been going on. Here's my attempt to catch you guys up.

The bronchoscopy showed that the bleeding is NOT coming from Ethan's lungs! The pulmonologist seems to think it's coming from his upper airways since the tissue there is very edemas, friable, and prone to bleeding. Since Tuesday, the bleeding has slowed down significantly, however. As of this morning, Ethan is off of the Fentanyl and Versed, as well as his feedings. This is in preparation of extubating him later on this afternoon! They will re-assess his situation around 3:00 and decide then if it's time to take the tube out. I'm so looking forward to that happening, but I'm so scared at the same time. Please pray that this attempt will go much better than the last. They are going to monitor his bleeding and if it looks like it's becoming a problem, he will be intubated AGAIN. The fewer times this tube goes in and out of his body, the better. Let's hope this is the last!

The bleeding/vent issue has been our biggest hurdle this week. Other than that, Ethan is doing very well. He continues to remain stable and is really good about calming himself down once he's been worked up. I think we've got a very good baby on our hands :)

You've already read about my highlight of the week, but we've also been able to give him a bath and change some diapers. It's amazing how such a simple task can mean so much!

Thank you for continuing to lift up our little man. Your prayers are loud, strong, and effective! You can also be praying for Jeramie and I as we're beginning to feel worn down and tired of being in the hospital. We need the strength to press on these next couple of weeks! We love you guys, and appreciate you more than you know!

Friday, March 20, 2009

The Best Gift EVER

Tomorrow I will turn 27 years old, though this hardly seems like the time to celebrate. Today, however, I was given the best birthday gift of all; I got to hold my son. I spent about an hour loving on him and enjoying every second he was in my arms!

I had a long conversation with another mom today who recently had the same experience. Her son was born the day after Ethan and she was able to hold him for the first time yesterday. We talked about how holding your baby is something so many people take for granted on a daily basis and we've spent the past 2 weeks just longing for that time.

I can't explain how I felt when the nurses put him in my arms. Even though he was connected to so many wires and tubes, he seemed absolutely perfect. For that hour, all was right in our totally messed up world. My heart aches for the day that I can walk over to his crib and pick him up whenever I want. For now, I will be thankful for the times that I get a glimpse of what that will be like.

Thank you Lord for my sweet, precious gift.

Thursday, March 19, 2009

Jumping Hurdles

As many of you may already know, Ethan's surgery went very well today. I was a much happier mama as this one only lasted a little over an hour! The pacemaker is in and it seems to be working as it should. There isn't much to report as far as updates are concerned. Ethan is back on some pain/sleeping medication so he spent most of his day being pretty out of it. He did wake up when Jeramie and I were in the room and gave us some really good "eye time". I love it when he looks at me and responds to my voice and touch. It helps me believe that he knows who his mama is, even amidst all of this.

It seems as though his unexplained bleeding is starting to slow down. The pulmonologist has yet to run any tests; they're trying to hold out and see if it stops on its own. The team doesn't want to risk causing any more trauma to whatever is going on and I'm totally OK with that.

Personally, I'm starting to feel a little bit of anxiety about Jeramie going back to work on Monday. Thankfully he'll only be 10 minutes away, but something about being at the hospital without him doesn't seem right. I don't know if I'll be lonely as much as I'll be missing his strength and support.

Speaking of Jeramie, I knew he would be a great dad but I don't think I was prepared for the emotions that would come along with seeing him in this new role. If he just looks at Ethan the right way, I cry! My favorite is when I walk in and find him humming our new favorite song, Amazing Grace, to him. We've started calling the following verse "Ethan's verse":

"Through many dangers, toils, and snares
I have already come.
'Tis grace that brought me safe thus far
And grace will bring me home."

Thank you, God, for your grace.

Heart Friends

As Jeramie has mentioned on Twitter, we have met many amazing people in this hospital. Two particular families have been extremely encouraging, and have offered prayers and support for us as we're going through this process. It's been so nice to have other moms to talk to who have been in similar situations.

These two beautiful girls are our new "heart friends". I would encourage you to check out their blogs and say some prayers for them and their families. I personally think of them daily and thank God for crossing our paths.

Wednesday, March 18, 2009

Surgery #2

Hey everyone. Just a quick update to let y'all know that Ethan is scheduled for his pacemaker surgery tomorrow morning. He is the 1st case, so the plan is for the team to take him back around 6:45 a.m. Jeramie and I plan to be at the hospital around 6:00 so that we can meet with Dr. Jaggers and sign the consent forms. Here are some specific things to pray about:

-for Dr. Jaggers; that he would be well rested and ready to operate on our son.
-that the entire team of medical personnel would work with grace and efficiency.
-that Jeramie and I would get some rest tonight and find peace during the operation.
-that Ethan's body would be prepared to handle his 2nd surgery in 8 days.
-that our family will have safe travels as they come to be with us.

I'll update sometime tomorrow after the surgery. PRAY HARD!

2 Steps Forward, 1 Step Back

Yesterday was probably the most stressful day since Ethan's surgery. We appreciate all of the prayers and words of encouragement we received after yesterday's update. Jeramie and I were able to get some rest last night and we woke up feeling refreshed this morning.

Ethan is doing OK. The bleeding is still an issue and the pulmonologist is planning to do a bronchoscopy at some point today to try and locate the cause. We're praying that this is something minor and will begin to heal itself. We haven't gotten a lot of information on what it could be, so at this point we're feeling pretty clueless.

We also found out that Ethan will have surgery to insert the pacemaker. We are currently waiting on Dr. Jaggers' nurse to come talk to us about it. From the little bit we know it sounds like it will happen tomorrow morning. Say some prayers that God will strengthen his body for tomorrow's operation. It's not going to be nearly as invasive as last week's surgery and there's no reason right now to think he won't do just fine.

We're realizing that Ethan is a very particular little boy! He loves to be swaddled and can't stand for his diaper to be the least bit dirty. He's been put back on the sleep medication and pain reliever to help out with some of the agitation he's been experiencing the past 24 hours. I love seeing him awake and active but, at the same time, it's so much easier seeing him resting so peacefully with the medication.

I'll be sure to update later on once we know more about the specifics of his upcoming surgery. Until then, keep praying. We love how much y'all love our little boy!

Tuesday, March 17, 2009


This morning, around 10:15, Ethan was taken off of the ventilator through a process called extubation. We weren't able to see him for a while after the procedure, so I went down to the pump room to do my thing. Around 12:00 Jeramie texted me to say that he was in the room with Ethan. I basically ran to the unit to go see my little boy!

When I walked in, Jeramie had a pained look on his face and my eyes instantly darted to Ethan. He was trying his best to cry, but his voice sounds very raspy from having the tube in place for so long. I also couldn't help but notice the blood coming out of his mouth. I got sick to my stomach and began imagining the worst. It turns out they think he has a cut in his mouth from sucking/biting on the tube. They don't know this for sure, so my mind is still racing with all the things it could be. I sat with him for about 10 minutes. I started to break down, then Jeramie reminded me to stay strong for him. I made it about 2 more minutes before I had to leave the room. I couldn't stand to see him bleeding, trying to cry, and what seemed like in pain.

As I was in the middle of typing this, Jeramie came out to tell me that they had decided to re-intubate him. His x-ray showed that parts of his lungs had collapsed and he wasn't doing as well off the vent as they had hoped. We were prepared for this possibility, but it's still upsetting. I don't like knowing that he's bleeding and we don't know why. I don't like that they have to re-insert the tube.

I'm frustrated, scared, mad, and sad. Pray for strength, peace, and healing for our son.

Still Smiling

Pumping has proven itself to be a very interesting time for me. I'm either sobbing and having lots of good "God time", falling asleep to the rhythmic sounds of the pump, or, like last night, making up songs about the whole process with Jeramie.

To the tune of "Chicken Fried", here it is:

Well, you know I like my pumpin' time.
Warm milk on a Monday night.
A pair of flanges that fit just right,
And the pump turned uuuuuuuuuuup.

Start it on about 2 or 3,
But that's not strong enough for me!
Turn it up about 3 or 4 more
And it starts to pooooouuuuur.

Oh you know I like my pumpin' time.

I'm sorry if this makes my male readers a little uncomfortable, but Jeramie and I think it's too funny not to share! More importantly, many of you have expressed concern about Jeramie and I being in this hospital day in and day out and "needing a break". We want you guys to know that we're still laughing and smiling. We're loving and enjoying each other in ways I never knew were possible (especially given our situation). This hospital has become home in a way. It's where my family is and there's no where else I would rather be.

As far as an update is concerned, the ICU team is currently taking Ethan off of the vent, so I will be sure to post later on today with his progress.

Keep your prayers coming. We're feeling stronger and more at peace with each day that passes. We love y'all!

Monday, March 16, 2009

Update & Perspective

Jeramie and I have had a great day visiting with Ethan! He got me a little worked up when he got the hiccups and they kept interfering with his heart rate monitor, but other than that he's still truckin' along.

I haven't been back to see him in a couple of hours, but he's been getting lots of love from Grandma and Aunt Jessi. It sounds like he's not coming off the ventilator today, which I am OK with. They want to make sure he's absolutely able to handle it before they pull him off, and it will decrease the chance of having to put him back on it. Slow and steady wins the race, right?!

He's also had a low-grade fever since this morning. They're keeping a close eye on it and will possibly screen for infection if it rises. Please pray that this is nothing and he'll recover quickly from it.

The pacemaker is looking more and more like it will be a part of Ethan's future, but I had a bit of an epiphany about it this morning. I realized the reasons I don't want this for my son are a bit "superficial" or "aesthetic", as Jeramie calls it. I don't want there to be a bulge under his abdomen where it will be placed for now. I don't want there to be a bulge under his collar bone where it will end up eventually. I don't want to hear an audible tick in a very quiet room. However, I do want Ethan to grow up and live a normal, healthy, active life. If this means that his heart can't do that on it's own, and needs a little help, then so be it. We had a very good nurse explain it to us this way: the pacemaker is like a back-up that we're not lucky enough to have. It'll be set so that his heart can do what it can on it's own, but when it's not able to, the pacemaker will kick in and help it out. That is a very reassuring way to look at it, I think. BUT, I am still not giving up hope. I still know that we serve a God who just loves miracles and I still believe that a miracle can happen. It may not be the miracle I'm looking for, but I know God's not going to let us down.

Keep praying. We still have a long road ahead of us, but it's getting a little easier to take these much needed steps.

Quick Update

Hey everyone. I apologize for not getting around to updating the blog yesterday; our days go by surprisingly fast! This is going to be short and sweet, but I plan to sit down later on today and give you the details of the past day or so and updates on today.

Tubes and wires are slowly, but surely, being removed from Ethan's body! This is great news as it means he is becoming less and less dependent on "stuff". All of the chest tubes have been taken out, his "Rambo headband" (the O2 sensor on his forehead) has come off, and his NG tube was replaced with a tube more suited for feeding. They began feeding him with my milk last night and that was even more encouraging to keep up the good work on my part! The dressing over his incision has been taken off with the exception of 2 small bandages at the top and bottom of the scar. The top bandage keeps his drool from getting into the incision, and the bottom bandage covers the wires for the temporary pacemaker.

Speaking of the pacemaker; I am specifically praying that God would take away the need for this. Dr. Jaggers, and even our nurse last night, told us that the heart can find other pathways to "communicate" and they're not sure how or why this happens. If this happens with Ethan, I know it will be because of the prayers of so many people seeking this directly! So please join me in praying specifically for Ethan's heart to begin communicating normally without the use of the pacemaker.

Another huge thing to be praying about today is the ventilator. The plan is to take Ethan OFF of it today and see how he does. This is super exciting, but so scary at the same time. He's been on it since he was about 8 hours old, so it's essentially all he knows. The nurse prepared us that it may take a couple of tries for him to come off completely. However, the more times they have to re-insert the breathing tube, the higher the risk of damaging his vocal cords. Pray that Ethan comes off today and all goes well the first time around; and pray for his worried mama, too!

That's all I have time for right now; check back later on today for more!

Saturday, March 14, 2009


Tonight I threw myself a pity party. I'm not sure what set it off; it may have been that Jeramie was having a little bit of a rough time during dinner, or that I was starting to get really tired, but as soon as I got some time alone the tears started to flow. Who knew that pumping could be such a therapeutic, spiritual time??? I began to feel sorry for myself, for my little boy, for my husband, for our family. I found myself pleading on Ethan's behalf that this would all be over soon. Although every day gets easier, I still hate seeing him like this. I hate that his feet look like pin cushions, that his lips are dry, that he can't cry. I can't wait for the day that I can hear that sweet sound. I begged God to take away the need for this pacemaker, to allow Ethan to grow up to live a normal active life, and to not have to endure ridicule for his differences.

I kept asking "why?", then I walked into his room and saw his sweet little face. I still don't understand it all and I still don't think it's fair, but he is my son. God chose us to be this precious boy's parents and that is one thing I don't ever plan to take for granted.

Due Date

It's crazy to think that Ethan was due today, but he's already been in this world for 6 amazing days. I don't think I can adequately express the pride and joy I have when I talk to someone about him. We've met lots of great families since we've been at Duke and they never fail to stop us in the hallways to ask how he's doing. I grin every time I get to say "He's doing really well". Jeramie told one family last night that if Ethan's story were to be in a newspaper the headline would read "Ethan Mullis Exceeds Expectations", and that's so true. He continues to surprise us and his nurses with his progress. Thank you God for healing and recovery.

Yesterday was a big day for Ethan as Dr. Jaggers was able to close his chest! This greatly reduces his risk for infection (but we're still being super cautious), and it's comforting as a mama to know that he doesn't have this gaping hole in his little body anymore. He handled the procedure like a champ and his swelling hasn't been anything like they thought it would be. Dr. Jaggers was able to remove one of his chest tubes as well; 1 down, 2 to go! The Dr. did say that he thinks Ethan may be on his way to a permanent pacemaker, but they're going to give him 7-10 days to prove them wrong. We believe that Ethan will probably do just that! Last night it was discovered that he has an underlying atrium rate of 80 and his atrium was barely being paced at all!! The ventricle still needs constant pacing, so be praying that things would begin to look up and we can get him off of this thing. As long as Ethan is "pacer-dependent" he can't leave the PCICU (unless they go ahead and put in a permanent one).

Before we left last night the respiratory therapist came in to adjust the ventilator. They are in the process of weaning him off of that, and it had been decreased even more over night. He's also currently down to 28% oxygen, so only 7% more to go until he's breathing room air!!

We've also got PEE! Never in my life have I been so excited about urine. His output is negative, which means he's peeing out more than they're putting in, and that's exactly what we want to see. Over night they were able to cut his Lasix dosage in half! Some of his kidney levels are still a little elevated, but they are expected to go down as his kidneys start doing more of the work on their own. We learned yesterday that doctors often refer to the kidneys in newborns as the "stupid organs" because they take so long to catch-up and start working after a surgery such as Ethan's.

We were told a few different times yesterday that we have a little "miracle baby" on our hands. Looking back on my pregnancy I can see how God was preparing me for Ethan, and everyone is right; he definitely is our little miracle.

Friday, March 13, 2009

Another Great Night

Jeramie and I are at the hospital waiting for the doctors to finish up their rounds so we can go back and see our little fighter. We actually went to our hotel around 10:30 last night (I pretty much had to be read the Riot Act to get me away from Ethan's bed) and were able to sleep until about 5:00 this morning. I'm finding that the nights are definitely the hardest. I know I need to leave, but it's so hard to walk away. Those are the times we miss him the most and the major tears begin to flow.

However, all of you worried moms out there will be happy to know that I've been pumping every 3 hours or so, even throughout last night! Each time I woke up to pump, we called the PCICU (Pediatric Cardiac ICU) and spoke with Ethan's nurse. Let me just go ahead and throw out a huge shout-out to these nurses; I can't even begin to fathom doing what they do, but they do it with such ease and grace.

Around 2:00 this morning Ethan had been given a little bit of sleep medication. He had been off of it earlier in the night, but as he started to wake up he got a little agitated and we definitely don't want that right now. The nurse also told us that his urine output had started to increase, meaning the Lasix are working to pull some of that fluid out, and his kidneys are starting to "wake up" and empty the fluid from his body. This is a HUGE step forward for him right now!!

Around 5:00 I called and his nurse reported that he had been peeing even more, and they were able to decrease his epinephrine levels. They had been decreasing throughout the day as Ethan showed he was able to stabilize his blood pressures, and he's now on a super low dose! He's also on 35% oxygen, down from 60% earlier yesterday. The room air O2 levels that you and I breathe are 21%, so he's getting there!

We continue to be amazed by what his tiny body is doing. We know your prayers and working; we feel them and hear them loud and clear! Today you can specifically pray that his urine output would continue to increase; the doctors would like for those levels to get to a certain point before they'll close up his chest. Also pray that his pressures will remain stable, even as he begins to wake up and becomes pretty ticked off about his situation :)

My plan is to update every morning during rounds. For now, it's 9:30 and our son is waiting. Time to go tell him good morning....

Thursday, March 12, 2009

A New Day

Well, here we are on March 12, 2009; my induction date. As you all know, Ethan had other plans and today we're celebrating his 4-day birthday. I can't even believe how much love I have for him in just these few short days. I was really worried about "bonding" with him without being able to hold him, feed him, etc. but God has really given me a love that I could have never imagined.

Yesterday was probably THE hardest day of my life. Harder than him being taken from me while I was still at Rex. Harder than any of those "bad ultrasound" days (which I thought were totally devestating at the time). Waiting in that room, knowing that my precious baby was in such a fragile state, was mind-numbing. There were times I literally felt as though I couldn't move any part of my body. I am so thankful for our family, Jason, and Jeff who sat with us through such a long process, even when it felt like I had nothing to offer.

The good news is that the surgery was a success. It took me a while to realize that, as there were a few other major complications that were not anticipated. I could only focus on the fact that things didn't go exactly as planned and, to me, that said it didn't work. Thank God for a husband who is able to speak the truth to me in such a loving, compassionate way.

Ethan had an OK night; it definitely could have been worse, and it could have been better. His nurse just told me she would call him "critically stable". He hasn't been urinating as well as he should be, and there's the possibility of him going on some medication to help pull the fluid out. He also has some fluid build-up in his right lung that they're working to alleviate. Overall, he is doing OK. I just had the chance to go see him and love on him a little; it's still so hard to see him like this but, at the same time, I can't stay away. I've been forsaking all the basic human needs (eating, drinking, sleeping, and, for a new mommy, pumping) to be with him. You guys can pray that I start taking better care of myself, so that I can be the strong, healthy mama that he needs right now.

I feel so generic saying this over and over, but THANK YOU for the continued prayers, support, hugs, calls, e-mails, and tears you've shared with us over the past few days. We still have a long road ahead of us, but with your help, and God's mercies that are new every day, we're going to be OK.
We welcome visitors but, given Ethan's condition right now, we're not going to allow anyone other than grandparents to go back and see him. Fighting infection is a huge part of this process and we're going to be as cautious as we can! We would still love to see you guys though, so feel free to come by. We're on the 5th floor of the main Duke Hospital in the Cardiac PICU.

We love you.

Wednesday, March 11, 2009


Here's a little taste of what you've all been waiting for .... Meet Ethan! :)

Tuesday, March 10, 2009

Update on Ethan

Wow. What a long past few days this has been. Thank you so much for the hundreds (and I mean hundreds) of calls, e-mails, messages, etc. I wish we could respond to all of you, but it seems like there's just not enough time in the day to maintain any normal sense of living right now. Please know that we love hearing from you, and knowing that so many prayers are being sent up on behalf of our little boy is SO encouraging.

Here is what we know about Ethan so far (the kinda short story):
-ultrasounds performed on his spine, head/brain, abdomen, and kidneys have all come back NORMAL. This means all other major organs are functioning the way they should be!

-his heart condition is called Pulmonary Atresia with VSD (on the spectrum of Tetraology of Fallot). This basically means he has no pulmonary artery and there is a hole between his right and left ventricle. I've become an expert on the heart in the past couple of days and could go into much more detail, but that's the basis of his condition.
-the geneticist is sending off 3 different tests: 1) a  chromosome karaotype, 2) a more detailed testing of his chromosomes that would show any deletions, and 3) a test for a specific mutation called TBX-5. The genetic disorder the geneticist is suspecting is something called Holt-Oram, but again, only the results of the blood tests will tell us for sure. The first two tests are being read locally, but his blood for the 3rd test is being sent to Houston, TX. We should know the results of all these tests in the next 3-4 weeks.

We found out today that Ethan's surgery will be TOMORROW, March 11 at 8:30 in the morning. They expect it to last about 4 1/2 hours, as they have decided to do a complete repair. This means they will fix his heart so that it functions normally, it's just going to look a little different. He will need multiple surgeries to maintain tomorrow's surgery, but they don't anticipate another one for the next 3-4 years.

I know many of you would like even more details, and I really hope we can provide those for you at some point in the future. Right now, we just wanted to make sure everyone knows the basics of what's going on with our son.

Here are some of our immediate prayer requests:
-that Ethan remains stable through the night so that his surgery can go on as scheduled tomorrow.
-for the surgeons, and entire team of people, who will be operating on our little boy.
-that Jeramie and I will find time to rest tonight, as tomorrow is going to be a very long day.

We'll be sure to update after his surgery. I can already anticipate the thousands of prayers that will be lifted up tomorrow morning. Jeramie and I thank you in advance for that, and for all the prayers we've felt thus far.

We love you and appreciate you more than we can say.

Monday, March 9, 2009

Ethan Kendrick Mullis

Our son is here! Ethan was born on Sunday, March 8, 2009 at 6:46 a.m. He weighs 6 pounds 5 ounces and is 19 1/2 inches long. He has lots of dark brown hair and, in my opinion, is too beautiful for words.

However, not long after his birth it was discovered that Ethan was born with a few birth defects, the most serious of those being a life-threatening heart defect. He spent most of the afternoon and evening on Sunday in the Special Care Nursery at Rex before being transported to Duke around 9:00 last night. My OB has agreed to discharge me a day early (today) so that we can go to Duke and be with our son.

We are exhausted, scared, and empty. We miss him more than we can express. We are so thankful for the team of wonderful nurses and doctors who have assembled around our little boy. We are thankful for the support group of friends and family who have been praying around the clock for our family. We could not do this without any of those people, and especially not without a God that we know is bigger than any of this.

Please continue to pray and keep those calls and e-mails coming. We may not respond, but know that hearing from you guys in any way, shape, or form does wonders for our spirits.

I'll post some pictures once we get them onto our computer! He truly is a handsome little boy :)

Thursday, March 5, 2009


That sounds like a great day to have a baby, right?! Jeramie and I found out today that I will be induced next Thursday, March 12. It is SO crazy knowing that, if nothing else happens, this time next week we will be at Rex getting very close to meeting our baby (I hope!!)

My OB was pleased with the progress I've made being on house arrest (reduced swelling, lower BP, etc.) and a non-stress test showed that Baby Mullis is just as healthy and happy as can be. Thankfully the doctor saw no need to schedule a c-section and is confident that I can have a normal delivery!

I am a very proud and happy mama right now! I wish we had a scanner; we got the cutest picture of Baby Mullis' face, sticking out his/her tongue. Although, it won't be long before we can see the real thing!

Thanks for all of your prayers and words of encouragment up to this point. We ask that you keep them coming!

Stay tuned...
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