Wednesday, April 29, 2009

CT Scan & EEG Update

Hey guys. This is going to be super quick, but I wanted to let you know the results of Ethan's tests from yesterday. We haven't spoken with a neurologist yet, so we just know the basics, based on what the ICU fellow has told us.

The CT Scan was NORMAL!! I think the neurologist expected that there would be some abnormalities, based on a clinical exam of Ethan, but we've learned to not really have expectations anymore... Needless to say, we're thrilled!

The EEG also had a bit of good news in that it did NOT show any of the diffuse slowing that the 1st one showed. It did, however, show some irritability in the left temporal lobe. This was also noticed in his 1st EEG, but we're not sure what this means. As of right now, the neurologists are not concerned with the results, but they do want to follow him closely after we're discharged.

That's all for now. We've been moved to a different room within the PCICU and have had conversations regarding moving back out onto the floor. We're making progress, and thanking God for every small step along the way.

Tuesday, April 28, 2009

A Good Day

I do believe that today is the first time in 6 days that I can say, "it's been a good day". It's truly amazing how much can happen in a week! Two weeks ago, we would have never guessed that Ethan would code. Now, a week out from "the event" (more doctorese) we can't believe the progress he's made.

Today is also the first day I've looked at him and thought "that IS my son". He's not looked like himself, or acted like himself over the past 6 days, so today was HUGE for me. It's so much different being in the PCICU this time. This time I know who he is, how he's supposed to act, what he's supposed to like and dislike. I didn't know any of that before, and that's partly what makes this go-round so much worse.

The biggest news from today is that Ethan was successfully extubated! He went from the vent to a nasal canula and has been doing great. I think that definitely helped out with him looking more like Ethan. It's amazing what seeing that upper lip can do!

As if that wasn't enough to make his mama happy, I was able to HOLD HIM for the first time since he coded. There were so many emotions that came along that; I can't even begin to describe the moment. For all you Mamas and Daddys out there, go take an extra 5 minutes to cuddle with your child. You never know when that privilege may be taken from you.

The other big update is in regards to his brain activity. Last night there was slight reason to believe that Ethan had a seizure. The team has since decided that wasn't the case, but an hour long EEG was repeated this afternoon to monitor his brain activity. He also went down for a CT scan this evening to get a look at his head from that perspective. We won't know the results of these tests until tomorrow, or potentially later, but I'll be sure to update once we have a better idea of what's going on.



It's difficult to think about what a traumatic experience this was for him, or what his life might be like in response to this arrest. I am an impatient person by nature, so just waiting to see how his heart will function, or what his cognitive development will be is TORTURE. I want to know that my son will be okay. I want answers that some of the smartest doctors in the world can't give me. But I need to remind myself that my hope is not in tests or doctors. My hope is in a God that is bigger than all of this crap, and He is holding my little baby in His huge hand. That doesn't mean I'm not angry, or questioning why this had to happen to MY family. But somewhere deep inside me is still that hope, and right now, that's all I have left.

Monday, April 27, 2009

Updates

Hey guys. I apologize for the lack of updates over the past few days, but I've just not had the energy or desire to post anything lately. I'm just going to highlight the facts we know, as of right now, and hopefully I'll be able to give more details later.

Heart: We're still not sure about Ethan's heart function. The second echo, compared to the first, showed that things had improved slightly. He had another one this morning, but we haven't heard the results of that yet. The hope is that the further out we get from his arrest, the better his function will be, so we'll see.

Lungs: X-rays are showing that his lungs are not yet clear, but getting there. Each x-ray looks a little better, so we're hopeful that they'll be back to normal fairly soon. He is on very minimal settings with the vent, and it's been mentioned that they may try to extubate tomorrow.

Brain: In trying to figure out what happened on Wednesday, one doctor mentioned possible seizure activity. An EEG was performed to monitor Ethan's brain and it showed no current seizures. However, it can't tell us if he had them in the past, or if he'll have them in the future. One thing the EEG did show is something called diffuse slowing, meaning activity was slowed over all of his brain. This could be because of the sedatives he was on during the test, or also because he was on the jet vent at that time. We've been told the only way we'll know if the results are accurate will be by watching his behavior over the next few days as he begins to wake up. The EEG will more than likely be repeated at a later date.

Stomach: A swallow study (upper GI test) was done today and the preliminary results show that Ethan has severe reflux. We'll talk with the doctors once they've had a chance to read over the results, and hopefully get more information/details then. It's possible Ethan may need to have another surgery that will basically wrap-up his esophagus with part of his stomach, literally keeping him from being able to throw-up.

Medications: Ethan has come off many of his medications since Wednesday. He's currently on Milrinone for his heart, and a course of anti-bacterial and anti-fungal medicines just in case an infection/fungus is to blame for all of this.

I think those are the "big rocks" right now. Things are moving at a very slow pace, so updates are not coming quite as frequently as we're used to, or as quickly as we would like. BUT, everyone does think that Ethan is "trending well" which is doctorese for moving in the right direction. I'll keep you posted as we learn more.

Please continue to pray for our little boy. We thought he had already jumped over his biggest hurdles, but it seems like he still has a few left to go.

Friday, April 24, 2009

Heartache

Last night was ridiculously awful.

Once Jeramie and I were alone in our hotel room, the reality that our baby was NOT with us set in and I lost it. I missed him so much. The past 4 weeks I've laid in a bed beside him and enjoyed holding him every chance I got. We changed diapers in the middle of the night, dressed him, played with him, sang to him, read him stories, and really began the process of getting to know who he is. I missed that. I clung to the blanket he coded in because it's the one thing we have that smells like him.

Not only did I miss him physically, I missed HIM. I missed his cry, his cough, the way he sneezes 3 times in a row. I missed the way his face looks when he's pooping. I missed that sweet, sweet smile. I missed the personality that was beginning to develop. I missed our son.

I can't explain the heartache that comes along with knowing that he seemed so healthy one day, and then so sick the next. When I think about my Ethan, my sweet baby who was beating all the odds, it makes our current situation seem SO much worse. Don't get me wrong. I am COMPLETELY thankful for those 4 weeks, but I feel like we got a small taste of what we deserve, and then it was ripped away from us.

However, the doctors have reassured us that our son IS still in there, and he's fighting to come out. Until then, we will continue to do what we can to let Ethan know that we are still here, too.

Lord, please bring him back to us.




Thursday, April 23, 2009

Update: 4-23-09

Man...where do I start? Just when I thought the "bad days" were behind us, we hit a concrete wall. And that's exactly how I feel. The way I felt the day of Ethan's open heart surgery has nothing on this. I can't explain the sheer sadness and frustration I have right now. But, I want you guys to know what's going on with our son and, honestly, blogging has been somewhat therapeutic through the past 15 hours.

Given what his body has gone through since yesterday, he's doing pretty well. There's one number in particular that we've been watching, which is the level of lactic acid in his body. Normal range is around 1, with 3 being on the high side. When Ethan was brought over to the PCICU last night, his lactic acid level was 24. This almost guaranteed that he would be hooked up to the ECMO machine, but the doctors decided to wait it out and see what his body would do. As of right now, his lactic acid is 3. Simply amazing.

The idea is that as this level drops, his heart function should improve. Unfortunately, the echo that was performed this morning still showed that his heart is not functioning as it should. It's hard to say if this is due to him still recovering from cardiac arrest, or if this is going to present a problem. The next 24-48 hours should shed a little more light on that.

Also, in regards to his heart it is now producing beats on its own. Well, the way it does with the pacemaker, I should say. Last night, both the atria and ventricles were being paced at a rate of 130 beats per minute. Today, his atria is beating on its own and the ventricles are being paced to keep up. This is the same way his pacemaker was performing before all this happened. I hope that makes sense.

Chest x-rays show that his lungs are looking OK. He was given Surfactant last night and this has made a huge difference. His oxygen saturation levels are staying in the high 90's, and often times, at 100%. The jet vent seems to be doing exactly what we want at this point.

We met with a general surgeon this morning in regards to his bowels. The thought is now that maybe the bowels weren't the problem to begin with. The x-rays look OK (not necessarily normal, but OK) and don't seem to be a cause for concern right now. The surgeon said he's mainly concerned about how they will recuperate from the lack of blood flow they received while Ethan was coding last night. They will watch him over the next few days to check the function of those as well.

A quick, preliminary ultrasound of Ethan's brain showed that it looked structurally normal, with no areas of bleeding. However, the radiologist asked that the ultrasound be repeated this morning just to get a more thorough idea of what's going on. The chest compressions last night lasted about 10-11 minutes, so there is some concern that his brain could have been injured due to a lack of oxygen. There are no signs pointing to this right now, but again, everyone triple checks things around here, so we'll hopefully know something this afternoon.

It also seems as though Ethan's kidney function is good. He is peeing as he should, which is a really good sign. He may be put on Lasix just to help pull off some of the fluid they've been giving him over last night and today.

I wish I could sit here and update you guys on the logistics all day long, for your sake and mine. It's almost like I turn into "robot mode" as I listen to doctors and come here to share the information. I become emotionless, and that feels good right now.

But when I really sit for a minute and realize what is happening to our family, it's more than I can handle. When I see him looking worse than he did 6 1/2 weeks ago, I can't deal. I absolutely loathe seeing him like this, yet something stronger than myself keeps pulling me to his side. I try to think about his sweet smiles, his cry, and how healthy he was just 2 days ago, but that almost makes it worse. I get sick to my stomach when I think about the going home outfit we bought last week, or the carseat I just had installed. He should be wearing those cute clothes. He should be riding in our car, sleeping in his crib, and meeting so many of you. But he's not. He's very sick and, as of right now, no one knows why. I want this rollercoaster to stop. I want him to be well and doing all the things we had imagined he would do.

But he's not, and I can't deal with the reality of that.

Oh yeah...

I should probably also mention that, at this point, his lungs are the biggest "issue". They were injured during all the aspirations, and Ethan was not successful on the vent (The Blue Monster) after being re-intubated. He's now on something called a jet ventilator, which is giving him 300 breaths per minute versus the 30-40 breaths he was receiving on the regular vent. The regular vent could cause more injury to the lungs, due to it giving him more deep, full breaths. Although the jet vent is giving him many more breaths per minute, they are shorter and more shallow, which won't cause as much trauma.

Once his "breathing" is stable and his oxygen saturation levels are stable, they will start him on a medication that will hopefully repair his lungs.

**halfway through this post, the nurse came out and said we could go back to see him again**

The latest is that Ethan's heart is beating entirely with the use of the pacemaker and he's still on the jet vent. One doctor ventured to say things are getting better, but he's still very, very sick. In this case, better doesn't really carry as much weight as we would like it to.

I find myself getting more angry by the minute. Yesterday, I had forgotten my son was sick while he smiled and cooed at me. Tonight, he's paralyzed and sedated. He's not breathing on his own, nor is his heart beating on it's own; and I'm angry. Why, God ... why?

This Sucks

Thank you Mandy for updating everyone for me. We've learned a lot in the past few hours and I'll do my best to reiterate what we've been told.

The doctors think this all started with his bowels. The short story is that we all know Ethan's heart isn't perfect. Due to this, there could have been decreased blood flow to his bowels, which caused them to get "sick". His sick bowels caused him to vomit, which he then aspirated into his lungs. His lungs began working extra hard to breathe through all the fluid, which caused his heart to become very tired.

Then he crashed.

Many of you are probably wondering how his heart stopped with the pacemaker. Basically, the pacemaker was still sending signals, but his heart was too tired to keep up. So it stopped.

I can't explain that moment to you. I saw his heart rate drop on the monitor, I saw a look of terror in Jeramie's eyes. I heard Jeramie yelling at Ethan to wake up. I looked at Ethan and the only word that comes to mind is lifeless. I started screaming and the next thing I know I'm in the hallway and 30-40 people are in our room. Then I began to fall and someone caught me. I don't remember much, but I wound up in a chair somehow.

All I could say was "not him, not our baby". I couldn't cry. I couldn't move. Absolutely awful.

So, 4 hours later we're sitting in the waiting room of the PCICU, where we started 6 1/2 weeks ago. Ethan is in extremely critical condition right now, and the next 6-24 hours are going to be tough to get through.

I want to tell you to pray, but I have no words to explain what I want you to pray for. Honestly, I'm just ticked off. I know you all say that God has chosen us to be Ethan's parents for a reason, but I don't understand why He chose us. I may never know, but I would love for Him to shed some light on that sometime soon.

I'll update more as we learn more. Thank you for caring, for loving us, and for praying the best you know how.

Wednesday, April 22, 2009

Update Tonight on Ethan

Hello all! This is Mandy typing this update...Joye just called and gave me some more details and asked if I would type up a blog post because she just can't right now.

As soon as Joye hit publish on the last post Ethan's heart stopped. His heart stopped, he stopped breathing, and he coded. Joye said tons of people rushed into his room and started doing chest compressions and working on their little boy. She said it was all surreal and she just went out into the hallway and basically collapsed.

So now they are back in ICU and he is re-intubated. His heart is beating about 110-120 beats per minute but it is not pumping blood correctly through his little body. It is not functioning like it should. His doctor has been called and he is on his way up. They are planning to decide if they should put Ethan on an ECMO machine. This is basically a heart-lung bypass machine that would help give his heart a break.

They definitely think all of this is related to his issues from earlier today but there are a lot of questions of "why" right now.

That is about all they know. PLEASE keep praying for Ethan, Joye and Jeramie. They really need it tonight.

I will update or they will when they know more information.

UPDATE

As I was typing that last post, the fellow came into the room and said, after looking over everything, she's planning to run a few more tests. The x-rays still look fine, but we need more info. So, here is what's about to happen in the next few minutes/hours:

-an echo to look at his heart and make sure it still has healthy, normal function
-an EKG to make sure his pacemaker is working as it should be
-more blood work to take some cultures in order to rule out infection (his white blood count is normal, so infection isn't suspected. The doctors here like to double and triple check everything, and I so appreciate that!)
-a test called a BMP which will look at his electrolyte levels

Again, we ask that you fervently pray for Ethan, Jeramie and me, and the entire medical staff. I hope to have more information the next time I post.

Urgent Update

Hey y'all. We're in need of some prayers right now. Since about 2:45 this afternoon, Ethan has been having some difficulties. He woke up from a nap hot and sweaty, which turned into cold and clamy. Not long after that, he became pale, his lips were looking a little blue, and he was struggling to breathe. The doctors immediately got involved and ordered a series of tests including: a chest x-ray to look at his lungs, an abdomen x-ray to check out his bowels, and blood tests to check his red and white blood count.

The good news is that the x-rays came back clear. His lungs and tummy look fine, which led the docs to believe he was anemic. It wasn't much longer until we got the results of the bloodwork, which showed that his blood levels had actually increased from his last work-up, which is also good news. So, now what?

We're not sure, and neither are the doctors. The cardiology fellow is currently looking over the x-rays and blood levels herself and is hoping to develop a plan of action after doing so.

The "good news" would be a little easier to accept if Ethan was doing better, but he's not. He's still very pale and looks exhausted. There are times when he breaks out in a cold sweat and his lips begin to turn blue. His breathing is still labored, which is extremely difficult to watch. He is definitely not his normal self and we wish we knew why.

Please stop what you're doing and pray for our son. Pray for wisdom for the doctors, nurses, Jeramie, and myself. Pray that we will be strong advocates for him. Pray that his symptoms would either disappear, or we would find a reason for them.

"You should be sleepy..."

Hello, and welcome to Ethan's play time.

The past 2 nights (or, mornings) Ethan has woken up at 3:45 on the dot. Last night he was back to sleep by 5:30. It's currently 5:35 and he's not giving us any signs that he plans to get some shut-eye anytime soon. As Jeramie fervently tries to rock our happy baby to sleep I hear him say, with the most convincing voice, "You should be sleepy..."

Good try, Daddy. I think you may need to keep rockin'.

Here's a glimpse into our time spent together yesterday morning. Enjoy the smile at the end; this seems to be his favorite time to flash those gums!


video

Tuesday, April 21, 2009

Our Week Thus Far...

Hey y'all. I haven't really been in the mood to post anything lately, but I seem to have a lot swirling around in my head. We're enjoying a new, slower paced life this week which I think is contributing to my laziness with blogging. Here are some highlights of the past few days, with a few prayer requests thrown in:

-Ethan is well on his way to reaching the 8 pound mark. I suspect he'll be a few ounces over that when they weigh him tonight; we shall see!

-Speaking of weight...I had my 6 week check-up today and I'm 1 pound away from my pre-baby weight! This may sound strange, but I knew after I had Ethan I would be extra motivated and encouraged to lose even more than that, and I am. I find myself power-walking the tunnel under the hospital just to feel like I'm exercising. One more reason to get home!!!

- *sigh* home... Lord, please get us home. According to the cardiologist today, it's looking more like Saturday or Sunday until we'll be discharged. The doctors are taking things extremely SLOOOOW with Ethan's tummy, which keeps pushing us back a couple of days. We're optimistic that we'll be out of here by Sunday. Please, please, please pray that the next few days go well; that Ethan tolerates his feeds and that we don't have any more surprises! We all just want to go home...

-I wish there was something other than "thank you" to say to y'all. That hardly seems appropriate to express our gratitude for the blessing you guys have been to our family. I cried tears of thanks last night and have just been completely overwhelmed with what people are doing to help us out in all areas of our life!

-I really miss my friends. I miss hanging out with people. I miss my church. I miss my cat. I miss my bed. I miss the smell of my house. I miss Target.

-Jeramie "dropped" Ethan's NG (feeding) tube for the first time tonight. We have to insert it 3 times before we can go home. I'm sick to my stomach thinking about my turn. Y'all pray I find the confidence and strength to do this for my little boy.

-As far as feeding goes, pray that Ethan would continue to find success with the bottle. Some days are better than others, but he's getting there! He is being treated for reflux, which will hopefully make his feeding sessions a little more comfortable and successful.

So, there you go. Consider yourself updated! Continue to pray; your prayers have gotten us this far! We love y'all.

Monday, April 20, 2009

Buttons!

Remember Charlotte? I posted this a while back about her and another special friend of ours. Anyway, her amazing mama created some buttons for the blog! The first one, "Praying for Ethan", has a code attached so that you can post it to your blog and spread the word about our little miracle. The second button will link directly to my previous post about how to help.

Thank you, Jenn! Now, you guys put her work to good use and grab the button!

Sunday, April 19, 2009

Yummy!

video

I think we may have a thumb-sucker on our hands! And speaking of all things mouth-realted, our little eater took 14 ml from a bottle today!! He's currently up to 7 pounds 14 ounces, and gaining weight every day. We sure do love our thumb-sucking, bottle-drinking baby!

Saturday, April 18, 2009

Movin' On Up

We've had a pretty busy week here in room 5324! Ethan's had a lot of visits from family and friends, and we've enjoyed the company. Jeramie and I also left Ethan with the grandparents Wednesday night so that we could go out for a date night. It was nice to spend time together outside of the hospital, and we're thankful for our parents who agreed to hang out here!

Not much has changed since I last updated. Ethan's feeds are up to 17 ml/hr, which is on track to reach our goal tomorrow afternoon! He seems to be tolerating them pretty well; he has only spit up twice, and the doctors seem to think it was "normal baby" spit up. We are watching him for signs of reflux, though, since heart babies tend to have problems with this.

We may have stumbled upon a little bit of beginner's luck with the bottle feeding on Tuesday. Since then he hasn't seemed very interested in the bottle and only took very small amounts by mouth on Wednesday, Thursday, and Friday. However, today he drank 8 ml!! This is the most yet, and the therapist was very encouraged by his progress. Way to go, Ethan!

Probably the biggest news of all involves the word H-O-M-E. If all continues to go well with his feeds, it looks like THURSDAY might be our day!!! Yes, THIS Thursday! We are so very ready to get out of Duke! Although we feel like we're obligated to be Duke fans now, we'd rather not spend another week in this place. Please pray that Ethan would tolerate the compression of his feeds and that we can get back to Plum Frost Dr.

That's all for now. Keep the prayers coming, especially over these next few days. The light at the end of the tunnel is getting brighter and brighter and we're running towards it with all our might!

Tuesday, April 14, 2009

An Update

Forgive me for not updating y'all on the surgery yesterday. Things went really well and Ethan's now using a fully functional central line!! The surgery was over in about an hour, then he was in the recovery room for about two hours after that. We actually got to go back with him for the pre and post op procedures, which was way different than his past two surgeries.

The broviac was inserted under his right clavicle then tunneled down under the skin. The tube comes out just to the right of his open-heart incision. This "port" is used to give him the TPN he needs, as well as any medications, and it will come out right before we're discharged. However, as far as medications go, I'm pleased to say he is currently off ALL meds! This includes the antibiotics he was on for Nec, and the heart medication that was regulating his blood pressure. The doctors don't see any need for these medications right now since he's doing so well. Praise God!!

In other news, Ethan LOVES his Soothie! He's worked out a system where he puts his thumb inside the hole and sucks both at the same time, all while holding it with his other 4 fingers. I must say, it's absolutely priceless to watch! Being on bowel rest for 10 days has given him lots of time to practice his sucking reflex, which brings me to the next topic ... eating!

Starting last night, Ethan was given the goodness of his mama's milk again. He's starting out VEEEEERY slow. His goal is to get up to 20 ml of milk over an hour, which he'll receive continuously. Right now, he's up to 5 ml an hour and this will increase 1 ml every 8 hours. Like I said, SLOW. At this rate, we should be at goal feeds sometime on Friday. The reasoning for this is that his bowels haven't had to "work" for the past 10 days, so we don't want to overwhelm them with a lot of food at once. Babies who have been treated for Nec have to go through the feeding process much slower than other babies. Once we get to 20 ml/hour continuously we'll start compressing feeds again, with the goal of getting the same amount of milk he's getting now over a 30-minute time span. The amount of time it takes for this to happen all depends on how well his tummy can tolerate it. This is the last hurdle we need to jump in order to start running out of these hospital doors!!

Also, in regards to eating, Ethan drank from his first bottle today! It was such a sweet moment and made me tear up a little. The speech therapist came to work with him and began by using a syringe to squirt milk into a nipple. Ethan took 1-1 1/2 ml like a champ, so she switched to a bottle. At this point, he was only getting 4 ml of milk an hour, and he took the other 2 1/2-3 ml from the bottle in a matter of seconds. We were all shocked! This is VERY encouraging news and we'll work on this skill every day until we go home. It's still likely we'll be using the feeding pump for some of his feeds, but we'd like for him to take as much as he can on his own.

We are SO proud of our son. He's come so far in these past 5 1/2 weeks and we can't wait to see what he'll surprise us with next. Our prayer is that we'll continually give Ethan over to his Creator, and give Him the glory for all that's happening in his life. Please pray for more good days, for success with feedings (through the pump and the bottle), and that his broviac would continue to provide the central access we need (most importantly, no infection). Thank you for your prayers and all the love you give to our family!

Donation Information

This is a follow-up post to this one for those of you who are interested! Thank you for the encouragement you've given us in regards to asking for help. It's so humbling to know that so many people WANT to help and desire to live out the values of our community. We are forever grateful for that!

The following is the information you'll need if you would like to make a donation.

Make checks payable to "Visio Dei" and mail them to:
Visio Dei
524 E. Whitaker Mill Rd.
Raleigh, NC 27608

In the memo line, be sure to write something along the lines of "Ethan Mullis" or "Mullis Family" so that the church will know it's designated for us. At the end of the year, a statement that you can use for tax purposes will be mailed to the address on your check.

Thanks again for all of your support. We love you guys!

Monday, April 13, 2009

Surgery #3

Hey guys. I'm writing from the OR waiting room. Ethan just went back for surgery #3 to have a broviac inserted. Basically, the original idea to have it placed in his side by the cath lab folks was a no go. The pacemaker was too large of a concern, so it will now be placed in his chest area by a general surgeon.

This all came pretty quickly; even our nurse was shocked when they came down to get him!

Here are some things to be praying for over the next couple of hours:
-that God will guide the surgeon's hands and give them wisdom to make the right decisions on where to place this in his chest
-that Ethan will tolerate the anesthesia and come through the surgery successfully
-that he will have no problems coming off of The Blue Monster, aka the breathing tube/vent
-that this will be a successful solution to our IV issues over the past few days

In other news, your prayers worked wonders last night! Ethan slept for 4 hours at time, as if he woke-up on cue for his dose of Tylenol. He has been a very happy baby today for the most part, and now we're here waiting for what we specifically asked y'all to pray for. Keep it up...we still have a few bridges to cross!

Sunday, April 12, 2009

Not gettin' any better..

Hey y'all. We need some major prayers right now. I don't have the time or the energy to go into many details, but last night and today have been pretty bad.

The short of the story is that Ethan's IV didn't make it, and a 2nd one that was inserted lasted a matter of hours. He now has a scalp IV, which is exactly what it sounds like. He's getting a basic mixture of sugar water and his antibiotics through it, but no TPN. The fear is that if TPN goes through this IV, it won't last either. He's not sleeping well, and he's screaming when he's awake. We need y'all to pray that this IV makes it through the night, and that the 3 of us do, too. We're all going off of very little sleep and it's SO frustrating to not be able to help my baby.

The plan is for Ethan to go down to the cath lab tomorrow to have something called a hepatic broviac inserted into his side. This will give us the central line we've been going for. The PICC is no longer an option, so this is our next best bet. There's a chance this won't happen, though, because his pacemaker is on the same side the broviac would need to go. If the doctor feels as though he can't work around it, then we'll have to move onto Plan #1,342.

PLEASE, PLEASE, PLEASE pray for the following:
-a restful evening and night for Ethan, Jeramie, and myself
-that his scalp IV will make it through tonight and tomorrow until the broviac procedure
-that the broviac procedure will happen as planned tomorrow (they're telling us we're scheduled for noon, but we've come to learn that probably means more like 3:00 or 4:00)
-that the procedure would be a success, regardless of the pacemaker placement
-that Ethan would be calm during his wake times (his heartrate is staying between 170 and 200 when he's awake...not great)

We need y'all right now. We're feeling pretty spent, emotionally and physically. Please keep praying...

Saturday, April 11, 2009

Ethan's Rough Night

Last night will not go down in the books as one of our best. It all started yesterday afternoon when I noticed a red spot on Ethan's inner left thigh (where the wannabe PICC line was). I chalked it up to thinking his leg board was rubbing a raw spot and we moved the board to a new position. I made a mental note to keep an eye on it and really didn't think anything of it. A couple hours later, we were changing his diaper and noticed that the redness has spread and it was now raised and swollen. We immediately called in the nurse, who called in another nurse, who called in the doctor, who called in the IV team. Not good. The IV team determined that Ethan had something called phlebitis and had to pull the PIC line. Since this was the only source for him to receive his TPN, they had to insert a regular IV in his hand. He did not like this one bit!!

From there he would sleep on and off, but was more mad and in pain than anything. The cardiologist on call agreed to write a prescription for low-dose morphine if he needed it through the night, and thank God she did! Ethan only slept an hour at a time from midnight to a little after 4:00 a.m. He got the morphine around 4:30 and was fast asleep by 5:00. He must have worn himself out last night, because it's now 11:30 and he's STILL sleeping!!

The plan for today is to let him rest as much as possible, which hopefully means mama and daddy will get some rest, too! Y'all pray for healing for his little leg. It looks much better this morning, but still not great. Also pray this IV holds up until Monday. We just need to make it through the weekend, and then we'll be set to start feeds.

We hope you're having a wonderful Easter weekend! Stay tuned for sure-to-be super cute pictures of Ethan in his Easter outfit from Aunt Tara :) We love y'all.

Thursday, April 9, 2009

A Way to Help

Over the past few weeks many of you have asked "What can I do to help?!" I don't think Jeramie and I even knew the answer to that question for a while. It was overwhelming to process what was happening to Ethan and try to think of what we needed. However, you guys stepped in and took care of us in so many ways!

Now that we're on "the floor" our sleeping arrangements are taken care of and meals are easy to come by. Our mail is being checked and our cat is being fed (and cleaned up after). At this point, I think it's safe to say that all of our day-to-day needs are being met. We are grateful to everyone who has chipped in to help, and you already know we're thankful for everyone who has been praying for us.

Right now our biggest need is... money. There, I said it. I'm not sure if it's pride, or what, that makes saying that so difficult. But, it's so true. Medical bills are starting to roll in alongside our monthly bills. We should be Verizon's most valuable customer this month! But really, all jokes aside, we need help. Many have already given so much and we're praying that we'll be good stewards of what we've received. The plan is to open up an account through our church, Visio Dei, where contributions can be made. They will be tax deductible for you, and in a safe spot for us. This is still in the works, but I'll be sure to pass along the info once it's been established.

Apart from medical bills, we'll more than likely need help making it through the next few months with our routine expenses (i.e. mortgage, car, etc.) Jeramie was denied the ability to receive donated days at work, which equals to two weeks of non-paid leave for him. I will not be able to take my summer job if Ethan is still using the feeding tube at that time. These things combined will greatly impact our ability to pay our bills.

Please do not read this as solicitation. We do not take the fact that you're praying for us around the clock lightly, and we're humbled by the ways you've helped up to this point. This is simply our way to answer the most asked question, and to let everyone know at one time how you can help.

We love and appreciate y'all more than we can express. Thank you for caring so much for our family.

Random Updates

Hey y'all. I've been a picture uploading fool lately and haven't really bothered to give you guys an update on our little man. Please forgive the randomness of the next following statements; there's been a lot of little things going on lately!

Things have been going pretty well the past couple of days. For a baby who isn't able to eat, he sure doesn't have any problems sleeping! The cardiologist assured me today that him sleeping so much is OK, and we'll get a schedule figured out once he's able to start eating.

Speaking of eating, it seems the doctors have decided to make his treatment course for Nec 10 days instead of 14. This means his feeds will start on Monday, instead of next Thursday, which means we'll be 4 days closer to going home!!

Ethan had a CT scan yesterday (which he slept through) to take a closer look at a sacral dimple that he has. We found out today that there are no concerns and we don't need to take any further action with that.


We've yet to meet with anyone from orthopedics. We've been told we'll more than likely set up an appointment with them on an outpatient basis after we leave the hospital. Many of you have asked what we know about his arm and, right now, we know nothing more than what we're able to see.

Ethan's heart has pretty much been given the "green light" from the cardiologists. One particular doctor told us that, from a cardiology standpoint, Ethan will live to be 80 or 90 years old and we need to treat him that way. Maybe he sensed a little bit of the overprotecing mother coming out in me?? :) We obviously still have many open heart surgeries in our future but, for now, he's lookin' good.

Oh, and the PICC. What a pain. The last time I updated, we thought we had a decent line; it turns out we don't. Ethan actually pulled out some of the line by kicking his feet together and made it a PIC instead. The 2nd "C" we're missing stands for "central", so we basically have a really, really, really good IV. They're still not able to give him the ideal concentration of TPN, but they were able to up the volume. At this point, we're not sure if they'll try for a PICC again since he'll be getting fed on Monday anyway.

I think that's about all for now. Keep praying for our son! If you're like me, you probably feel like you're saying the same things over and over, or maybe your prayers don't feel as powerful or emotional as they did in the beginning. But, this post is proof that God is still working in Ethan's life. He is still in the business of healing our little boy, and we have the prayers of so many to thank for that. We love you guys!

Wednesday, April 8, 2009

One Month Later

Ethan is 1 month old today! In some ways, I can't believe it's already been a month; but, then again, these past 4 weeks have felt like a year. During my pregnancy I never imagined we would spend the first month of his life (and then some) in the hospital. I never imagined I would call Duke "home". I figured we would be hanging out at our REAL home, taking trips to Target, and walking around the neighborhood with our other mommy and baby friends. I've mourned the loss of a "normal" life these past 4 weeks, but have also been challenged to really think about what normal is. I've learned more about the human body than any biology class in college ever taught me, and I've found a love for another human being that I never thought possible.

I am completely head over heels in love with my son. His life is such a precious gift, and he truly is our miracle. I've learned a lot about him during this month and I'm looking forward to getting to know him even more. So far I know that if he's mad, he does NOT want his Soothie. He has a fake cough cry that is too pitiful for words. He loves to sleep curled up in positions that make me wonder if he can even breathe. He makes faces that he could have only gotten from his daddy, and he MUST have gotten his sleeping habits from Jeramie as well!

I've learned there is beauty in the breakdown, and for that I am thankful.

Happy 1-month birthday, Ethan. Mommy loves you.

Monday, April 6, 2009

Ups and Downs

The past two days have been a bit of a roller coaster ride for us and, as many of you know, I HATE roller coasters!

It all started Saturday night after the move into our 3rd room. Ethan started crying uncontrollably and we couldn't really figure out why. I know many of you are probably thinking "that's just what babies do", but this was more like a "I'm in excruciating pain and you need to fix it" kind of cry. It was horrible to see him that upset and not be able to help him! Sometime that evening he began passing some major gas, so we chalked it up to tummy troubles. We all went to bed and he woke up every hour, on the hour, crying that same pained cry.

Then came yesterday. Ethan was fussy in the morning, then the pooping started. He had not had a bowel movement since Thursday evening, so you can just imagine what it was like to change that first diaper! From there, he gave us about 4 dirty diapers in 2 hours. At that point the doctors began scratching their heads and said "You know, maybe this is nothing more than a nasty stomach virus" (i.e. "The Ninja Virus"). They sent his stool off to be tested and put us on "contact isolation", meaning everyone who came into the room had to wear a gown and gloves. Ethan remained inconsolable for hours. He didn't sleep, he didn't want his Soothie. Sometimes he wanted to be held, sometimes he didn't. Sometimes he wanted to be swaddled, sometimes he didn't. Techniques that provided relief one time didn't work the next. Around 9:00 I finally broke down. I felt helpless and was worried for my son.

Enter Nurse Shannon. I'm pretty sure she was a God-send. She came in, picked up Ethan, and rocked him to sleep. All the while she talked to us about how important it is to get rest so that we can be strong for him during times like these. She reminded me that I'm not a failure, that it's not my fault all of this is happening to Ethan. She spent about 20 minutes with us, which is HUGE considering she had 3 other patients to tend to.

Not long after that, Ethan was sleeping soundly in his bed and we were making the move to our 4th, and hopefully final, room. I had noticed earlier in the evening that 5324 was vacant, and BIG. I asked Nurse Shannon what she thought about us moving, and she made it happen within minutes. Ethan slept through the whole thing and only woke up once during the night.

It's amazing what a good night's sleep and a bigger room can do for a person. I think we finally feel like we're in a room that's manageable for the next 3 weeks. Ethan is a much happier baby today, too. I'm pretty sure he exhausted himself yesterday and has been sleeping the day away.

A team from the PCICU came in about 2 hours ago to try again with placing the PICC line. We're still waiting on the results of the x-ray to confirm if they were successful or not. I hope everyone is done poking him for a while!

Hopefully you made it to the end of this super long update! The stool sample came back negative, by the way, so feel free to come visit without worrying about getting attacked by the Ninja.

Saturday, April 4, 2009

We've Moved Again

Jeramie and I are becoming professional hospital room movers. We were told around 4:30 that we would be moving rooms, AGAIN! I guess there was a baby coming from the PICU who needed a step-down room. That, paired with the fact that Ethan never got the femoral line, got us booted out of room 5307 and into 5319, two doors down from where we started!

The kicker will be if he ends up getting a femoral line after all and we get moved back to step-down.

On a happier note, this room is about the same caliber as our first, so we're much happier with our space!

Feel free to come visit, and if we're not in 5319 don't be alarmed!

What a Night!

After typing that last update, I decided to lay down for a little bit while we waited for Ethan to come back. I must have been exhausted because I was asleep in a matter of minutes. I woke up around 12:30 to hear a new nurse telling us we needed to move rooms. Basically, the team was not successful with placing the PICC line, and was trying for a femoral line. Babies who receive this type of line have to go into a step-down room because they require a little extra care.

Now, you may be wondering, "I thought you guys were already in a step-down room??" Not so. We found out that we skipped the step-down completely and were placed on "the floor" when we made our move on Monday. Ethan was doing so well at the time, they saw no need to put us in step-down first. Now, we're here where the nurse to patient ratio is lower than on the floor.

So, back to last night. We made the move to room 5307 around 1:00 a.m. This room is a bit smaller than our first, which made unpacking a bit stressful. There are a few other "deltas" but we're trying to not focus on those right now! By the time we got unpacked and settled it was around 2:30 and the nurses were wheeling Ethan back to us. They informed us that they were not successful with getting in the femoral line, either. So, it's now 3:00 a.m. and we have a screaming baby with no PICC or femoral line, in a smaller, more stressful room. YAY.

Ethan fell asleep about 15 minutes later and was OUT for the rest of the night. Someone came in to take an x-ray around 6:30 a.m., then we all went back to bed until 9:00 or so. At that time, the IV team came in to say they were taking him down to try their luck at getting the PICC line. He was back an hour later with no PICC.

So, here we are in our step-down room with no PICC or femoral line. The plan is to let him rest over the weekend and try again on Monday. The first team was able to place a really good IV in his hand which will allow for some TPN infusion, but it won't allow Ethan to get as much as he needs to start growing. We're maintaining his weight for now, with the obvious goal for him to start gaining weight as soon as the PICC line is placed.

Pray that we all get some much needed rest this weekend and that Monday will be a good day for PICC lines! I'll be sure to keep y'all posted.

Friday, April 3, 2009

Good News

Hey y'all, Joye again. I've taken the blog back under my control :) A lot has happened since Jeramie updated you guys last night. This will be my attempt to summarize it the best I can:

Last night was not quite as rough as we had anticipated. Other than people coming in at all hours to take vital signs and x-rays, we all slept pretty well. There were times when Ethan would wake up randomly and scream, but he calmed down pretty quickly once I got him in my arms. I've made two observations about this : 1) I have a feeling he might be on his way to being pretty spoiled, and 2) there is definitely nothing wrong with this child's vocal cords!

The x-ray from over night looked stable, if not better than, the original x-ray that confirmed the pneumatosis. This was our first piece of good news for the day. However, it was followed by a bit of a blow. We found out that the bowel rest portion of Ethan's treatment will last for 14 days from yesterday. This means he will not receive anything in his tummy for the next 2 weeks, which means we'll be hanging out here that much longer. He's currently getting something called TPN to supplement his nutrition, so hopefully that will help with relieving some of those hunger cues/pangs.

The best news of all came about 2 hours ago. The attending cardiologist came in to tell us that Ethan's 3:00 p.m. x-ray showed NO SIGNS of pneumatosis!! How awesome is that?! How good is our God?! We're not out of the woods just yet, but this is exactly what we've been hoping and praying for. Ethan will receive 2 more x-rays over night, then the frequency will begin to taper off, given that nothing more develops.

So, what's the plan? As I've already mentioned we'll be here, for sure, until April 16 (14 days from yesterday). After that, they will start Ethan's feeds again. From there, its just a matter of how long it takes him to begin tolerating the compression again. We're preparing to be here for another month or so after all is said and done. Bummer? For sure. BUT, we are SO thankful that this was found before being discharged today. The doctors were able to be super aggressive with his treatment, and now here we are celebrating a clear x-ray!

In other news, Ethan is currently not hanging out with us. They took him back down to the cardiac unit about 30 minutes ago to try to insert a PICC line in order to give him more TPN. This procedure requires a little bit of sedation and a sterile environment, so he's back with his friends in the PCICU for a while. They'll bring him back to us once the line is placed and he's good and awake. Pray that all goes well over the next hour or so! This is the first time in 5 days I've been away from him for this long and it feels very strange.

Please keep believing in the power of prayer. I think my mama said it best tonight when she said, "my prayers no longer have an 'amen'".

"Pray without ceasing" -1 Thessalonians 5:17

Thursday, April 2, 2009

A Rough Day

Hello all. Jeramie here. Joye's busy holding Ethan so I thought I'd hijack her blog to give everyone an update.

Today has not been such a great day. This morning Joye and I were being prepped for discharge. They were going to teach us how to manage his feeding tube and had him lined up for a "pre-discharge" echo just to make sure everything is still okay with his heart repair. This evening we've been told that Ethan is being treated for a condition called Necrotizing Enterocolitis or "Nec" for short. This is fairly common among premature babies and babies that have been on bypass as Ethan has. It is potentially life-threatening, but after requesting an honest prognosis from the doctor, he says that it looks good since we caught it as early as we did. We caught it so early, in fact, that they can't say for certain that it's Nec. The signs seem to point to it, though, so they are treating him as if he had it just to be safe.

This has effected Ethan's ability to feed which was the main goal we needed to achieve before discharge. Part of Ethan's treatment for Nec includes being placed on "bowl rest", which basicaly means that he cannot have anything in his stomach for a few days. For anyone familiar with a baby's appetite, you can imagine the kind of trouble this causes. He's very hungry and will be that way for a long time. Tomorrow they will discuss ways to supplement his nuturition. Until then, pray that we make it through the night.

Please pray that this condition does not progress beyond what it already has. We are getting x-rays every 6 hours or so to monitor his progress. We should know the results of the second x-ray sometime tonight.

"Jesus loves him this I know
For the Bible tells me so
Little ones to Him belong
They are weak but He is strong"

Amen.

Wednesday, April 1, 2009

Got Milk?

Ethan and I are getting used to hanging out together during the day! For the most part, I feel like a "normal" mama with a "normal" baby. He sleeps, wakes up, cries, poops his pants, pees on me, and then the cycle repeats itself. I nap here and there, change his diaper, and spend lots of quality cuddle time with him. There's just one small thing that's missing: feedings.

Ethan currently receives all of his nourishment (my milk) through his NG (naso-gastro) feeding tube. It's basically a small tube that goes into his nose and down into his tummy. The OT and speech therapist have been working with him on his sucking and swallowing skills, but it's possible we may be going home with the tube. It takes some time for heart babies to learn how to feed, so they will often use the feeding pump and tube for a little while until they acquire the skill. It's a little scary to think about going home with this extra equipment, but I've learned that it's not about what I want. It's about what's best for Ethan.

The pump is not definite, however. We all know that Ethan likes to surprise everyone, so we'll see what the next few days hold. We are working on compressing his feedings right now. When he was first being fed through the tube, his feedings were continuous at 18 ml/hour. Yesterday, he was fed the same amount of milk over a 2 hour period with a 1 hour break. Today's he's being fed the same amount over a 1 hour period with a 2 hour break. The goal is to get him "eating" in 30 minutes with a 2 1/2 hour break. He's been tolerating the compression so far, other than throwing up once today.

At this point, compressing his feedings through the tube is the only thing keeping us from home. One doctor has been brave enough to say that we may be going home as early as Friday, but it will probably be early next week.

Please keep praying! I have lots of anxiety over this feeding tube and going home with such a special needs baby. Don't get me wrong, I can't wait to install his car seat, put him in the crib, and let him hang out in his bouncy seat. I just hope and pray I can enjoy those things without constantly worrying about his heart rate and oxygen saturation levels! Pray for me, Jeramie, and Ethan that we'll be a strong, supportive family. Pray that Ethan finds success with eating, and for our transition from room 5317 to Plum Frost Drive. Pray, pray, pray!
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