Wednesday, May 27, 2009

Love for Lucca

Hey y'all. There will be an update on Ethan to come later but, right now, I need your help. We met an incredible family while we were at Duke and they're in the midst of a very tough situation.

Lucca was awaiting a thymus transplant (we're about 99.9% sure he was going to receive Ethan's thymus), but he got very sick a few weeks ago and the transplant was called off. Basically, his body began making T-cells but, because he has no thymus, they had nowhere to go to "learn" how to function properly. They began attacking his body and the last I heard was that he would need to be started on a round of chemo to kill these bad cells before he can have a transplant. Ethan's thymus has since expired, so now it's just a waiting game until another family decides to donate their child's.

I also just found out that a few days before we came home, Lucca coded. Thank God the ICU team was able to bring him back! I'm not up to date on all the details since then, but I did talk with Lucca's sweet mama, Heather, for a few minutes this afternoon. Evidently, she and her family are trying to get Lucca back home, but the insurance company is refusing to "help with the additional financial burden of $20,000 to get Lucca back to Idaho" (where they're from). Lucca has been in the hospital since he was born 5 months ago, so you can imagine what kind of medical bills they're already dealing with. To now have the burden of needing $20,000 more just to be able to bring their baby home seems ridiculous to me.

So, here's where you come in. I know so many of you have already given your hard-earned money towards Ethan's fund and, because of that, our medical bills have been able to be paid in full for this calendar year. I can't express the relief we feel knowing that! Would you be willing to donate $5, $10, $25 to Lucca so that his family can feel th
at same sense of relief?? There's an average of 200 people who look at this blog every single day, including myself. If each of us would be willing to make a donation, however big or small, to this precious family we could help them out tremendously. Head on over to Lucca's site, read his story, and if you feel so inclined, click on "How to Help". I'm sure Heather, and family, will appreciate it more than you'll know!

Sunday, May 24, 2009

A Week of Appointments

I apologize for the lack of updates this week! I was given a friendly nudge (thanks ,Tiffany!) to post something soon, so here it is :) I've actually missed blogging, so it feels good to finally sit down and type something out.

This past week was pretty insane with all the appointments we had scheduled. After our time with the feeding therapist (Lou Anne) on Monday we began to work on some oral stimulation skills with Ethan. This involves putting different textures in his mouth (a bottle nipple, our finger) and letting him "explore" with his gums and tongue. It sounds kinda crazy, but he loves it! At one point we thought he would suck Jeramie's finger off his hand if he could! We actually dipped a bottle nipple into his milk and he took about 2 mL by mouth. This is huge because usually he HATES having the bottle nipple in his mouth, so needless to say, we were so excited! I'm very encouraged and hopeful about his potential to eat by mouth. We go back to see Lou Anne on Tuesday and I'm looking forward to any new ideas she'll have.

We finally made it to our pediatrician's office on Wednesday! The bulk of the appointment involved Jeramie and I going down the laundry list of Ethan's "issues", and then there was a quick check-up. We were thrilled to see that Ethan had gained a good amount of weight! When we were discharged last Thursday he weighed 8 pounds, 3 ounces. At this appointment, 6 days later, he weighed 8 pounds 14 ounces! Holy cow...11 ounces in 6 days! He was supposed to get his 2-month shots, but the pediatrician wanted to check with Duke first. Ethan's since been cleared to have all of his immunizations, so we'll be going in Tuesday afternoon to get that taken care of.

On Friday it was time to see the cardiologist. This was a marathon of an appointment! We went in at 10:30 that morning and didn't leave until 3:00 in the afternoon!! Our time there consisted of an echo, an EKG, a chest x-ray (to check placement of the pacemaker leads), and a pacemaker check. Dr. Idriss (our cardiologist) was able to make some changes to Ethan's pacemaker which extended the battery life to 3 1/2 years! This will, hopefully, line up with the time he needs his 2nd open heart surgery and they can just do it all at once! The echo was the only test that showed any areas of concern. Basically, Ethan's left ventricle has made great improvement since his last echo, but the right ventricle has not. The "squeeze" is very weak, and blood is passively flowing into his lungs rather than being pumped it as it should be. Dr. Idriss wants to watch Ethan a little more closely due to this, so we'll be going back in 2 weeks. Please pray that the right side of Ethan's heart will recover from such a traumatic 2 1/2 months! The echo also showed that his conduit does NOT have any significant narrowing! Praise God! We pray that this conduit will hold out for a couple of years, at least. The bigger and stronger Ethan gets, the better off he'll be for his 2nd surgery. And speaking of bigger, he tipped the scales at 9 pounds, 1 ounce during this visit!

This coming week brings it's own fair share of excitement. Jeramie starts back to work on Tuesday, taking advantage of his new work from home privileges. Then, my sister comes to visit Wednesday-Thursday. We're hoping to hit up the outlets one of those days to return some more of "Baby Hannah's" clothes and replace them with things for our surprise baby boy!

Thank you for continuing to follow our story. It's not over yet, and our little boy still needs your prayers! The cardiology appointment was a reminder that our baby is still sick, something that I think I've "forgotten" over the past week. He is a special boy, with a special heart, who's body still needs healing. Please continue to pray for our family as we adjust to this "new normal"!

Monday, May 18, 2009

Happenings from Home

Man, do I love being a mommy!! I guess I've technically been one all along, but there's something about being home with my son that makes it seem even more real. We've had a really good time here in Raleigh, and Ethan is proving to be a very good baby. Here's what we've been up to over the past few days:

-We took our first family outing on Saturday. We managed to make it to Target AND Babies R Us, and experienced our first tube feeding "on the go". It's only fitting that Target was a part of Ethan's first trip out. It is, by the way, where I found out I was pregnant and where I waddled around the day my water broke. So, of course I felt like he should experience it outside the womb as soon as possible!

-We've had many great visitors, and a couple of great meals brought to us. We look forward to seeing many more of y'all!

-Ethan finally made it to his first service at Visio Dei. I have missed worshiping at my church in a major way! To be back, with my son in my arms, was almost more than I could handle. And wouldn't you know, of all songs, the band played Amazing Grace. Remember this post? Yeah, I pretty much lost it. Thank you to everyone there for the warm welcome, prayers, and love.

-Grandma B, Poppy, and Aunt Jessi came and spent the day with us today. It was so good to see them, and I think they were equally excited. I'm pretty sure Ethan was held from the time they walked in the door, until they left! :) Well, other than when we took our trip to the Farmers' Market. That's right, we're showing Ethan every part of Raleigh possible! Too bad he slept the whole time and missed all the sights, but we enjoyed strolling around anyway.

-We planned to give Ethan his first bath at home last night, but that didn't quite work out. We've got our fingers crossed for tonight, because, good grief does he need it! There will surely be pictures to come of that whole event!

-Ethan had his first appointment this morning and it was with our INCREDIBLE feeding therapist. I would describe her as "appropriately aggressive" and I am encouraged by our plan to get him on oral feeds. Speaking of, Ethan seems to be tolerating his G-tube feeds a little better these days, so thanks for your prayers on that! Keep them coming, though, because we're changing his formula tonight and we're not sure how his tummy will handle it. We've also gotten his feeding time down to 45 minutes!

I think it's safe to say we're enjoying every minute of our new life. We're slowly, but surely, getting used to the feeding/medication schedule, and our house becomes a little more organized each day.

Please continue to pray for us. We see our pediatrician on Wednesday, then our cardiologist on Friday. We're praying for a good report on the echo he'll have done (improved heart function from his arrest & slowed narrowing of his conduit), and I'll be sure to update you guys on those results.

Until then, I'll be loving on and cuddling with my boy like there's no tomorrow! We love you guys!

Friday, May 15, 2009

Home Sweet Home

Well y'all, we made it! I can't even explain how good it feels to be in our house again. It felt like we were sleeping in the Ritz Carlton last night, with our soft sheets and towels! Aside from the pure comfort we experienced, it was INCREDIBLE to finally have our baby at home. I felt your prayers, for sure; thank you so, so much for that!!

We were packed and ready to go around 10:15 yesterday morning. After some last minute paperwork and figuring out some prescription issues, we were discharged around 11:30. This posed a bit of a problem, as Ethan needed to eat again at 12:00. Thankfully, the nurse allowed us to hang around until then, so we took the opportunity to say goodbye to our friends in the PCICU. We couldn't have picked a better time go stop by, as we got to be apart of the "Grand Exit" for Ethan's old roommate, and our newest heart friend, Olivia. She had been at Duke since December, so needless to say, it was a very happy and emotional goodbye!

We made it back to the room in time to give Ethan some lunch, and it took another 15 minutes to figure out how to get 9 and 1/2 weeks worth of stuff, and a baby, to our car. We left the hospital around 1:30, and I swear I could hear Ethan's body soaking up the sunshine the whole way home. (Did I mention he slept from 11:00 until we got home at 2:00???)

I'm not gonna lie. Once we got home, it was a bit overwhelming. All of a sudden we had a crying baby that we were completely responsible for taking care of, and had a whole slew of stuff that came along with him. We've spent the past 2 days finding homes for all of this new equipment; we haven't even taken care of the "normal baby" stuff! (Although, I do have to thank some very awesome friends and family for organizing our nursery and cleaning our house while we were away. We love you guys!)

Ethan slept like a champ pretty much the whole night. Jeramie and I were up every 3 hours to feed him, but aside from that, I'd say we slept pretty well too. Other than almost forgetting to give him his nighttime meds, I think we did a good job for our first time alone with him!

We've had some concerns today in regards to his feeds. He doesn't seem to be tolerating them as well as he has been, so we've slowed them down to over an hour (instead of 30 minutes). Would y'all pray that his tummy would be receptive to his new formula, and that we can get him back on a 30 minute feeding schedule? We go see our feeding therapist first thing Monday morning, so hopefully she'll have some ideas for us, too.

Overall, it's been VERY GOOD to be home. I'm not nearly as anxious as I thought I would be, so I know your prayers are working. We're also at a point where we're ready to welcome visitors, so if you'd like to stop by, just give us a call! We can't wait for everyone to finally meet the boy we've all fallen in love with over the past 2 months!

Wednesday, May 13, 2009

Prayers Wanted

Hey y'all. I have so many emotions running through me as I sit down to write this. Today has been a super busy day; our room has basically been a revolving door of people coming in and out to get things squared away for tomorrow. TOMORROW; the day I've been looking forward to since I found out I was pregnant...the day I finally get to bring my baby home (yep, I said it). I can't believe it's here; sometimes I can't even believe Ethan is still here. But he is, and I am so, so blessed.

Would you guys say some special prayers for me tonight? I'm feeling, what I assume, are normal "new parent" anxieties, which are heightened even more so due to Ethan's special care needs. I feel prepared/educated, now I just need to gain the confidence to know that we can do this! I'm also feeling a little scared of what could happen. Never, ever do I want a repeat of what we experienced a few weeks ago, and I need to believe that the precautions we've taken (the Nissen) will hopefully keep that from happening again. Pray that I would be able to separate unnecessary fear and worry from true parental instinct and concern. Pray that I would be able to enjoy this precious gift and not worry away the next few months as we adjust to our new life. For those of you who know me, you probably know that I worry constantly, so you really know how much I need these prayers right now!!! :) And if you didn't know that about me before, now you do, so pray hard!! Overall, I'm just so stinkin' excited.

"I'm so excited...I'm so excited...I'm sooo, soo, scared"
(Who can name that TV show/episode?!)

Anyway, Ethan is currently testing out his car seat. I'll take the fact that he's sound asleep as a sign that he doesn't hate it! I love seeing him in it; I cry just thinking about it! I'm sure I'll be a blubbering mess pretty much all day tomorrow, but I'll try to give you guys an update when I can.

We love you guys! We would not be in this position right now if it weren't for all the prayers you've sent up to our very gracious God.

Tuesday, May 12, 2009

Plum Frost Bound??

I'm pleased to be able to share some VERY exciting news with y'all!! We've talked to a few nurses and doctors today and, IF ALL GOES WELL, we'll be running out of these hospital doors on Thursday!!

We're technically "cleared" to leave tomorrow, but I wanted just one more night to make sure there are no mishaps. His feeds were just changed to a 30 minute feed time vs. an hour, and we want to be sure his tummy can handle that before we leave.

So, we need you guys to pray like crazy. Pray for Ethan's health and that his stomach would be able to handle such a large amount of volume over a shorter period of time. Pray that Jeramie and I will be confident to go home and give him the care he needs. Pray that all would go well over the next 2 days and we can get our little boy (and us) back where we belong.

We're so excited!!!

Monday, May 11, 2009

Updates on Ethan

After typing out that last post, I realized that y'all would probably like to know how Ethan's doing! Aside from all the Mother's Day events, things have been somewhat uneventful with him, and we like it like that.

So, after all the drama surrounding that IV line, I'm here to report that we no longer have it. Mark that down as IV #247 that we've lost since being at Duke. His nurse noticed yesterday afternoon that it was no longer flushing (meaning, it was clogged) and she wasn't able to save it. So, out it came, along with another patch of hair. I'm beginning to wonder if we should just shave his whole head and start over?! The curls in the back keep me from doing anything so crazy, though! The worst part about losing the IV is that he was unable to get his last dose of antibiotics. However, they seemed to have done the trick as he hasn't had any more fevers and his white blood count is back to normal! Praise God!! His blood & urine cultures are also still negative.

Grandma B (my mama) spent the day with us today and Ethan enjoyed being held pretty much all morning. We spent most of the day waiting to go down to our new room, and finally made the move around 5:00 this afternoon!! We're now hanging out in step-down in room 5310, a luxurious corner suite one of the bigger rooms on the hall. We're not sure how long we'll be here, but I hope to have a better idea after rounds tomorrow morning.

Pray that things continue to go as well as they are. With no major mishaps, it's very likely we could be going to the "h word" sometime this week!!! We're SO ready, but we need to make sure Ethan is just as ready. We've learned not to rush him, so wait we will.

Until then, we'll be here...finally able to sleep with our baby again and cuddle any time we want! If you'd like to come visit, feel free. I especially wouldn't mind some visitors during the day while Jeramie's at work.

Thanks for praying us through these past 9 weeks. We can't wait to continually turn these prayers into praises!

My 1st Mother's Day

First of all, thanks to everyone who left me such sweet comments regarding Mother's Day. I can say it was one of the most incredible days I've ever experienced! I had high hopes, with it being my first one and all, and it completely exceeded my expectations.

It started at the hospital, where Jeramie and I got to spend a few hours of uninterrupted quality time with our son. I was also greeted by a card that Ethan and his night nurse had made for me.

Then, we got a special visit from my good friends Wendy, Nancy, & David. They drove all the way from Wilmington to surprise us with an amazing gift. Evidently, a HUGE yard sale was held on Saturday to benefit Ethan and our medical expenses. We knew nothing about this, and were shocked to learn that almost $4,000 was raised for our family!! I still have not processed that whole thing. I'm in awe of how much people love us, and I'm completely thankful for God's provision. Needless to say, I cried.

My mama and sister got me a bag of goodies, complete with chocolate, Aveda supplies, and lots of other treats. Then Jessi informed me that Ethan had a present for me, and he wanted to give it to me. I walked into his room to find this:

It's my first "mother's ring"! His name and birthdate are engraved on the sides, and an aquamarine (the March birthstone) sits in the middle. That's a pretty good gift from a newborn who's never left the hospital, huh?! :) I get the feeling Ethan & Aunt Jessi will be joining forces many more times in the future!

After dinner at Chipotle, a trip to Raleigh, and surprise visits with Mandy & Bernie, I eventually made it back to the hotel room where I found a bouquet of flowers and a super sweet card from my husband. It was the perfect way to end a perfect day.

I feel so blessed to be able to celebrate a day like yesterday. I feel incredibly lucky to have the friends and family that I do, who love me and my own family more than I can understand. Thank you to everyone who made yesterday so amazing.

Ethan, my life is richer because of you and, Jeramie, I'd be lost without you as well.

I love you all!

Saturday, May 9, 2009

What a Day...

Today has been quite an eventful day. It all started when Jeramie and I got to the hospital around 9:30 this morning. We weren't able to go back and see Ethan until well after 10:00, which we later learned was because he needed a new IV, and a team was working to get one in. Evidently he kicked the one out of his foot and, as we all know, our little man is not an easy stick.

Two hours, and a number of nurses later, there's still no IV. You may be wondering, "why is it so important for him to have an IV?" Well, he's currently on 2 pretty powerful antibiotics that we're hoping is killing any infection he may have. They run through his IV, and the oral antibiotics aren't quite "powerful" enough, as we understand it. So, we needed that access.

Anyway. Jeramie and I hesitantly leave around noon to get some lunch (outside of the hospital!) and run some errands. We made our routine walk to the parking deck, got to the car, and what did we find? A flat tire! Great. Thank God for my husband who changed that thing like I change my underwear. He made it seem so effortless, and we were on our way in a matter of minutes. I love him.

We made it to Firestone, where Ed tells us that not only can he not repair the flat, but we are going to need a 2nd tire in addition to the one we've already lost. Double great. Throw in a much needed alignment and an oil change, and we're headed back to the hospital having lost 4 hours of our time and $300 of our money.

We finally made it back to see our son, and he greeted us with a super stylish scalp IV. Some of you may remember his "Easter hat" from a few weeks ago; well this is basically the same thing, minus the medicine cup. Evidently a super hero nurse from the Intensive Care Nursery swooped in and got this one in in a matter of minutes.

We spent the rest of the evening watching Ethan sleep. I guess he was so tuckered out from the stress of getting stuck for 2 hours, and who can blame him??

As of 9:00 this evening, he hadn't spiked any more fevers, so please pray we're at the end of this infection scare. We'll know tomorrow morning how his white blood count looks, and we're praying that will come down as well. Oh, and we have plenty of poop! For those of you who have read my Twitter/Facebook update regarding this little dilemma, nice job...but you can stop your "prayers for poop" now :)

As for me, I'm tired. And super excited about my first Mother's Day; I've waited to celebrate this day for a really long time! Thank you Lord for my precious baby boy.

Friday, May 8, 2009

Two Months Later

Happy 2-month birthday, Ethan!!

He decided to kick off this special day with a fever of 102 and an increased white blood count. No fun! His temp spiked around 2:00 this morning and blood drawn at 4:00 showed the increase in the white blood cells. The doctors decided to send in some cultures to see if anything grows over the next few days. Children typically develop a fever after surgery, but the fever paired with the increased blood count is slight cause for concern (i.e. infection). He's been put on a broad-spectrum antibiotic for the next 2 days while we wait to see if the cultures show anything.

PLEASE, PLEASE, PLEASE pray that this is NOTHING! He's not had a fever since it first spiked this morning, so hopefully that is a good sign. It's slightly possible that the Broviac could have been getting infected, which would be even more reason to be glad it's out!

On a happier note, Ethan is now sporting a new look for his 2-month birthday. His face is completely tape-less and tube-less, and we plan to keep it that way! The vent is gone, and so is the NG tube that was being used for his feeds. The surgeon gave the team the go-ahead to use the G-tube today, so he's now receiving small amounts of milk (12 ml) over 30 minutes. We skipped the whole continuous feeds thing and went straight to bolus (larger amounts of volume over a shorter period of time). The plan is to increase his feeds by 12 ml every 6 hours, so we should be at a pretty good goal by tomorrow. This all very exciting, but I can't help but wonder if it's the calm before another storm. I hope and pray with all my might that it's not, and we ask that you do the same!

Here's to what this next month has to offer!

Thursday, May 7, 2009


Thank you guys for praying so hard for Ethan! He finally went into the OR around 12:00 this afternoon, and the surgeon came out around 1:00 to tell us that everything went as planned.

Part of his stomach is now wrapped around part of his esophagus, and he has a little tube coming out of his tummy that he'll be fed through. The plan is to let him rest tonight, and then the surgeon will evaluate the tube tomorrow. If he feels like everything looks good, the doctors will start giving Ethan small amounts of Pedialyte, then transition over to milk pretty quickly. According to the doctors on rounds tonight, the hope is to have him back up to full feeds (24 ml/hr) by Saturday morning.

One small surprise from the surgery was that Ethan ended up losing his central line access (the Broviac). It hadn't been used for about a week, and had actually worked itself into a less than ideal position. The surgeon tried to non-invasively "fix" it but, in the end, he and the PCICU doctors thought it would be best to go ahead and pull it. This is a little concerning to me because we always seem to need those central lines at the craziest moments (remember our whole PICC line ordeal??) Anyway... you guys can pray that this would NOT be a big deal and that Ethan would continue on this "not needing a central line" path. As long as he tolerates his feeds through the G-tube, he shouldn't need anything more than an IV, which he now has in his left foot.

So, basically, all is well in room 5411. He was resting comfortably (thank you, Morphine) when we left this evening, and we hope he continues to do so throughout the night. You can pray specifically for the following:
-the already mentioned central line "issue"
-for his G-tube/Nissen site to heal fully, without infection
-that he would tolerate feeds going into his tummy
-for a successful Nissen ... no reflux = no aspirations = no arrest

Also, we have two special heart friends who need your prayers. If you read Lucca's story, you'll see why we love this little guy so much! However, Lucca is facing a pretty big hurdle right now and things aren't exactly going as planned. Please lift up some special prayers for this little guy and his family. Then there's Jack, who is one of Ethan's old "suite-mates" and has just recently come back to the PCICU from the floor. He and his family would really appreciate your prayers, as well! I continue to stand amazed at the friendships we've made within these hospital walls; they've all been such a blessing to our life and the least I can do is seek out prayer on their behalf.

We love y'all, and are still looking for something to say other than "thank you". So far, that's all we've got :)

Wednesday, May 6, 2009

Big Day Ahead

Hey y'all. Ethan's surgery is scheduled for 10:15 tomorrow morning. Please continue to pray that all goes well. We spent some time talking with one of his doctors this evening about the procedure, so we're feeling a little more informed and at ease.

The whole thing should last about an hour and a half, so think of us while you're eating your mid-morning snack :)

We love you guys!

Tuesday, May 5, 2009

Surgery #4

This past week has been pretty incredible; I am amazed at how resilient Ethan's little body is! He seems more alert with every passing day, and spends many hours wide awake and HAPPY! Many of you have commented on his eyes, and I have to agree, they are awesome. I thank God every time he opens them and gives me a sign that he is, indeed, "in there".

We've been quite the "boring" family of the PCICU. I guess, technically, we should be out on the floor, but Ethan's team agreed to let him stay in the unit until his surgery (which has been confirmed for Thursday, by the way). He doesn't really need intensive care at this point, but it's all about keeping him safe until then. He'll recover in the PCICU, as well, and they'll make sure he's tolerating full feeds in his tummy before they move us out.

Please pray for another successful surgery. This will be #4 in 9 weeks, which just blows my mind if I think about it too much. Pray that Ethan's heart function will be able to handle the anesthesia. Pray that the Nissen will work as planned, and will take away the fear of another arrest. Pray that the G-tube will function well and that we'll steer clear of any complications with that. Pray, pray, pray.

I'll leave you with what is probably my favorite picture of Ethan's first 2 months of life. Check out the dimple in his right cheek; oh, is his mama proud!!

Monday, May 4, 2009

A New Heart Friend

This morning, I learned about Milo's story; his mama and daddy are friends of our good friends Meredith and Jonathan.

Will you please join me in praying for Baby Milo, Jamie, and Chad?

Sunday, May 3, 2009

My Hope Endures

This afternoon I drove to Raleigh to attend a baby shower for my good friend Mandy. While I was in town I stopped by our house to read our mail, pack some more clothes, and spend some quality time with Little Orphan Annie. It was good to be home, if only for a moment.

While I was going through the mail, I came across a package from a name I didn't recognize. I opened it up to find a very nice card, a letter, and a CD. Just as I had thought, the letter stated that I, in fact, do not know this person. However, she went on to say that she had been at a concert, heard a song that made her think of my family, and wanted to send me the CD.

Once Jeramie and I got back to the hotel tonight, we listened to Track 7, "Our Hope Endures", by Natalie Grant. It was the perfect song, at the perfect time, sent to us by a perfect stranger.

Thank you, J. Cable. Thank you.

Saturday, May 2, 2009

The Road to Recovery

I hate to admit this, but I never expected Ethan to be doing so well this soon after his arrest. There were some pretty dark days where I had basically lost all sense of hope. BUT, that hope has been restored. I'm learning to lean towards God instead of away from Him. I've been able to release my anger and focus on being strong for my son. Just a change in attitude has made a world of difference for me.

I still have TONS of questions, and I'm not pretending to understand why this is happening to us. I still wake up every morning wishing we were in our house, and not going to spend another day in the hospital. But I'm accepting the fact that we are. I'm accepting the fact that we aren't, nor will we ever be, a "normal" family ... and that's OK.

So, enough of that. How about an update?

As I mentioned, Ethan is doing really well. He had an echo yesterday which showed his heart function IS improving, slowly but surely! We don't know if it will ever get back to the way it was before he coded, but we pray that it will. This is very encouraging news because it, more than likely, means that a "sick heart" was not the cause of his arrest. So, what was?

The most likely explanation is that Ethan had been having micro-aspirations throughout the day on Wednesday, meaning small amounts of milk and stomach contents were being refluxed and then aspirated into his lungs. This impaired his ability to exchange oxygen and carbon dioxide appropriately, which built up the level of lactic acid in his body. The high levels of lactic acid caused his heart to become "stiff" and unable to beat and respond to the signals from the pacemaker. We've been told that babies have an uncanny ability to compensate up until the very last minute. When their bodies finally give up, it happens extremely fast, as we saw with Ethan.

Given that this is the most probable cause of the arrest, and given the results of his GI study (which showed severe reflux), Ethan is moving towards surgery #4. Sometime next week (hopefully) Ethan will head back to the OR for a Nissen procedure. A G-tube will probably accompany the Nissen. We are relieved to know this operation will pretty much get rid of the chance that Ethan will experience this type of reflux/aspiration event again. Tomorrow, we'll meet with the surgeon who will go over the procedure more in-depth with us. Speech and OT will continue to work with Ethan on his oral feeding skills, with the hope being that he doesn't end up needing the G-tube for any longer than he would have needed the NG tube.

The plan for now is to hang out in the PCICU until the surgery. Ethan will then come back here to recover, and THEN be sent out to the floor sometime after that. We're not even mentioning the "H word" until the day we're being discharged, so don't ask! :)

This has been the longest, most exhausting journey of my life. However, I feel your prayers lifting me up when I'm feeling weak, and I see the progress Ethan makes with every passing day. Please continue to pray for our family as fervently as you did when this all started!

We love you guys.
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