Day 6/7 - Movin' on up!

Well, as stated in our last update, this update is being made from our new room on the step-down floor (CICC)!

We got moved up here around midnight. Ethan was already asleep & was not too happy to have to wake up for vitals & his midnight dose of meds. But he's so tired that he fell back asleep before his nurse even left the room.

Not much will change in terms of recovery/care/daily goals while being up here but it's nice to not be monitored quite as frequently. The main purpose of being here is for me & Dan to take over most of his care - eating, diaper changes, learn his med doses & frequencies so we will be ready to do it completely on our own once we get discharged.

Ethan had a good rest of the day today - he sat up for the majority of the day, ate a big lunch & dinner, & took a total of 5 walks. The last walk upset him the most - so much so that his o2 says dropped so they put him back on 1L oxygen for a couple hours. He's now down to. 5L & has been there for a couple hours so overnight they'll try to wean him off it completely.

Well it's late & I'm exhausted - have been up 18hrs so it's time to sleep while Ethan's asleep. Goodnight all & thanks for your prayers - please keep them coming!

Day 6 - mid-day update

What an eventful day we've had so far! Ethan is in a much better mood today - really starting to be the fun & playful guy we all know & love instead of the fussy & whiny kid we've had the past several days.

We played paper dolls this morning, as well as started making pipe cleaner & string puppy dogs from his Klutz activity book.

Then, right before noon, Ethan got his last chest tube removed! The pain med, combined with all the rain made for one sleepy boy, who I thought for sure would take a nap, but then we had a hospital- wide code red for a tornado warning so that kept his attention & he never fell asleep.

After the warning expired, Ethan got brave enough to let me leave him for 20min (most time he's been left alone previously was 5min for bathroom break) so I could run downstairs to the cafeteria to pick up lunch to bring back & eat with him. He one of his biggest hospital meals yet - 1/2 slice of NY style cheese pizza (which was huge & equivalent to 2 slices of take-out pizza), 1/2 small side salad, chocolate milk, & a few bite-size pieces of watermelon.

We took our second walk of the day around 2:30pm & now we're back in our room & resting. Oh, I mentioned that he's in a better mood - he just discovered the buttons on his bed that can adjust the bed position so he's enjoyed controlling that by himself - sitting up & laying back down. Up until today, we've been the ones controlling it & he didn't like it much!

Next update today will hopefully be from our new room on the floor!

Day 6 - making progress!

Dan spent the night with Ethan while I slept at the RMH for a change. I Since we're going to be here a little longer than we first thought, I got up early & did a load of laundry before heading back over here to the hospital.

Since Ethan's stable & making good (albeit slow) progress, Dan decided to go into work for a few hours today. Never really got an update on how it went overnight but Ethan did get off oxygen around midnight last night!

The chest X-ray this morning looked a little better but there's still some fluid so they decreased his frequency of Lasix (diuretic) & added another diuretic to help him continue to pee off the excess fluid. I think they've seen enough drainage from his right chest tube that they feel it's OK to pull it today!

There's also talk of trying to make room for him up on the floor today, but if that works out, it probably wouldn't be until much later today.

So, we're just going to continue hanging out here for noe. Still plan to stay on same schedule as yesterday to get up & walk every 2-3 hours. We took our first walk at 10am & it's almost 10:45 & Ethan's still not back in bed yet - he's been sitting up in the recliner for the past 40 minutes! They want him out of bed ad much as possible today so he can recover faster & keep the fluid draining off his lungs. He still fussed a little during the walk but didn't shed any tears this time, so that's progress!

Day 5 - evening update

Ethan walked every 2-3 hours today! He's still crying & making excuses each time but he's starting to pick up the pace a bit - especially while walking back down to his room! :)

Mid-day today he got his left chest tube removed & he had lots of drainage from his right tube from all the walking so hopefully his morning chest X-ray will look a whole lot better & maybe he can get the right tube removed at some point tomorrow. We're slowly making progress each day! He's still on 2L of oxygen and will wait for morning rounds to see if they want to try to wean him at all.

Thanks for your continued prayers & comments here & on Facebook. Please keep them coming! At this slow recovery pace, they're saying it'lll probably be the weekend at earliest before we'll be able to go home.

Goodnight all, we'll update again in the morning.

Day 4 evening update

Not much new has happened since the last update. We did manage to get Ethan out of bed & into a Radio Flyer red wagon to take a tour of the whole 2nd floor - not just the ICU but also the hallways & we even found our way to a different cafe (it used to be a Wendy's when we were here 4 years ago). We made 2 laps before Ethan said he was tired & ready to get back in bed.

After the wagon ride, Mimi & Pop-Pop came and stayed with Ethan so Dan & I could have a date night.

We're still in the PICU for another night at least, but ONLY because there's no room on "the floor" for us right now. So, that's encouraging that we've met all our goals down here!

Tomorrow morning we'll have another chest X-ray & hopefully all the time out of bed today + increased doses of Lasix today will show enough removal of fluid around the lungs so we can get the 2 chest tubes removed - that's our biggest desire/prayer request right now.

See picture below of Ethan in the wagon!

Day 4 picture & mid-day update

Praise God for an answered prayer - Ethan walked today! He managed about 75 steps out of his room & down the hall! He was crying the whole time, saying he was scared, but he did it! Then we turned around & he walked back another 75 steps, with hardly any crying! His cardiologist, Dr. R, just happened to be there to witness the whole event. He then sat in a chair for about 20 minutes before asking to get back in bed.

His reward was a Holley Shiftwell car from Cars 2! Now he's taking a nap, which he definitely earned & needs!

Dan's Dad (Pap-Pap) came to visit as soon as Ethan finished his walk so his belated birthday present (birthday was Friday, 9/2) was getting to see Ethan sitting there in the chair instead of the bed!

Now Ethan's taking a much deserved & needed nap! Getting up & moving should help with chest tube drainage. Before the walk, a doctor came by to say he thinks the tubes can come out today. Just waiting to see if there's much more drainage after that walk.  If he can get the chest tubes out, we're requesting that happens before Ethan has to walk again to help ease his fears a bit.

That's all for now, we'll update again if anything else major changes. Otherwise, we'll just update before bedtime.

Day 4

No real changes since last night. Biggest goal/obstacle to getting out of PICU is to get Ethan up & out of bed & to stand & walk. In rounds this morning, they said that had to be done before considering removal of one or both remaining chest tubes. We plan to attempt walking within the next hour (once Daddy gets here to help). We're running out of reward prizes & other ideas to motivate him to walk so we're praying he'll just be brave/not scared & conquer this fear of walking. I know it'lll be easier for him once those chest tubes are out but until then, we just have to force him to push through the fear & pain. It breaks our hearts to see/hear him scream about it so pray for us to be brave too! LOL

Day 3 - evening update

Not much has really changed since our mid-day update. I did forget to mention that Aunt Jessica & Uncle Brandon came to visit this morning & Ethan enjoyed their company (especially the snacks & care package they brought!)

Mimi & Pop-Pop (Julie's parents) were here for a couple hours this afternoon & gave Dan & I an hour to hang out in the lobby to play a game for a change of scenery. Also while they were here, Ethan got his central line removed from his neck! It was very scary for him & a little painful because it was stitched in, but afterwards, he got a prize of a new Dr. Material toy!

He never did have to get out of bed & walk today so I guess we'll work on that tomorrow?!? Dan & I are also hoping he'll get the other two chest tubes out since there's hardly been any output from them since the middle tube was removed earlier today.

Well we're all tired so we're going to bed soon & will update again in the morning.

Day 3 mid-day update

This will be a short update. I (Julie) am back at RMH just long enough to freshen up & eat lunch before heading back to the hospital. It's the weekend so no shuttles are running so I have to drive. It's also the first football (home) game so traffic is horrendous. (Go HEELS!)

There's still a lot of drainage & Ethan's not sitting much so we'll be in the PICU one more night. He had z chest x-ray & it looks good. He also had an echo & it too looked good so they pulled the middle chest tube out!

Before that, we managed to get him to stand up & then sit in a chair for 15min! He still has to take a walk today so pray for that. He cried nonstop while sitting in the chair - partly from chest tube pain but mostly just because he was scared. Hopefully with one chest tube gone & lots of prayer, the walk won't be quite as scary or painful for him.

Day 3 - post-op

Ethan had a pretty good night last night! We were only up once last night from 2-3:30am. He held his O2 sats in the mid90s. For the other 2 surgeries, sometimes his O2 would dip lower while he was asleep so this is a huge improvement & welcome change!

Pray for more improvement today in the area of drinking/ eating. They still have him on clear liquids for the morning & supplementing with IV fluids. We hope to drop the IV & start on solid food later today.

Also pray for bravery for Ethan because they want him to sit up more & even stand/walk - both of which he's scared will hurt.

We also think he will get his middle chest tube out which should help his discomfort & fear of sitting/standing.

Finally, pray that he's doing well enough to move out of ICU & up to the cardiac floor. That partly depends on how well he can eat/drink/move around but also is hugely dependent on there being a room available for us.

Doctors are doing their rounds this hour & we have some family coming to visit this morning so we probably won't have another update until noon or so.

Day 2 post-op

Mid-day update: Ethan's still doing well off oxygen, still on blow-by oxygen though. He drank 2 apple juices this morning, got 2 monitors removed (from head & back), got his Foley bladder catheter removed, Arterial line (A-line) IV removed from his wrist, & is on Toridol (sp?) for pain as needed through his IV. He's also taking Tylenol by mouth. He's been awake since the last update at 7am and just fell asleep at 12:15pm.

Main goal for today is to work on getting him up & moving around so fluid can continue to drain from his chest tubes so he doesn't risk getting pneumonia. Physical Therapy (PT) came by this morning & helped him sit up & hang his legs off the side of the bed. They'll be back a couple more times today, gradually building to sitting in a chair & standing on his own. He also has to be off all IV meds before we can leave the ICU & move up to "the floor".

While in ICU, Dan & I can't eat in there, nor can we have our phones on so sorry if we miss your call. We appreciate all the calls & comments on here & on Facebook. We enjoy reading every message, even if we can't personally respond to them.

Please keep up the prayers, we are definitely feeling them being answered!

Wednesday Morning

We arrived at Ethan's room about 10:15 am to find him wiggling about, keeping two nurses busy. Gone were the chest tubes and his arterial line in his left arm. He's got a central line in his neck and another IV line on his foot but they are just pushing enough clear IV fluild through to keep the lines from getting clogged. We were expecting to see a NG tube for feeding him. Instead, we received report that he had already taken 2 ounces of formula via bottle. Awesome!

He is very aware and we even got some smiles from him! Julie gave him 4 more ounces from a bottle - that is a regular feeding for him. Can you believe that? He is off of morphine and started a much more mild, extended release type pain killer. It was great to see him so lucid today. He is progressing faster than expected. One of his Drs said he should move up to the CICC today. The CICC or Cardiac Intermediate Care Center is the step-down unit from the PICU or Pediatric Intensive Care Unit (where he is now).

We are so grateful for how well Ethan is doing. It is wonderful to have so much support from friends and family. Your prayers have been a priceless gift that have made all the difference in the world. Many have asked how they can help us financially. We have set up a Medical Trust Fund through the Mitchiner Law Firm to provide a vehicle to ensure Ethan's long-term heart-related health care needs are met. If you would like to give to the Ethan Miles Medical Trust, please make your checks out to Ethan Miles Medical Trust and mail to Monte & Barbara Miles, 4905 Latimer Rd., Raleigh, NC 27609. The trust is set up so that any funds received must be spent only on Ethan's medical heart-related expenses. To date, Ethan has received just over $2000 dollars to help with his bills. Thanks so much!!!

And now for some fresh pictures!

First bottle that mom got to feed me after surgery!

Another view of me being fed by mommy!

Mommy fed me at 11am and Daddy fed me again at 2pm. I'm only on 24 cal/oz, still thickened feeds, instead of 26 cal/oz like at home but I've got a healthy appetite. My 11am bottle, I took my normal 4 oz. and at 2pm I took 5 oz.!

We just got word that we've got a bed upstairs in the CICC so we should be up there within the next couple of hours! Praise the Lord for such fast recovery this time around!

Another Update

Ethan's ventilator has been removed! He is still asleep. Hopefully we will see his eyeballs tonight. He is still doing very well. He is only on pain medication and 2 other "heart helper" medicines that he was on with the last surgery. He only has 2 chest tubes verses 3 last time. He might get these off tomorow.

We did get into the Ronald McDonnald House which is great. We're doing the Lucy and Ricky thing (twin beds) which is MUCH better than the full size we were in for 24 days last surgery. Can't wait to sleep in them tonight after having been awake since 4:30 am!

Another day in PICU

Well another day has come and gone here in PICU. Ethan is still doing well, but there are still no beds available in CICC so we'll be here in PICU again tonight. We will do our best to get some new pictures of our sweet son on the blog soon. The nurse said he took all his feedings by bottle, no NG tube needed! This was a small answered prayer, but still an answered prayer none the less.

We did have a small setback again today. At 1pm he had a swallow study done (he was fed a bottle of barium and had an x-ray done at the same time to watch his swallowing pattern). I (Julie) got to feed him the bottle and Dan watched with the radiology tech and speech therapist (ST) as the liquid went down his throat. We learned that towards the end of his bottle feeding, he had one small silent aspiration episode (this means that when he swallowed, it went down his windpipe instead of his esophagus and he didn't cough it up). Therefore, the speech therapist ordered him to start having his feeds thickened. The two options are formula thickened with rice cereal or breastmilk thickened with a really expensive thickening gel that can only be purchased online. He will have to stay on this eating plan for the next couple of months, until just before his next surgery when they'll do another swallow study. The ST said the silent aspiration is common for newborns who've had surgery and had to be intubated and that it is something that he should grow out of, so that's encouraging! Please be praying that he grows out of it sooner rather than later.

Another praise is that our friend's baby, Shelby, had her heart cath today and Dr. Stewart said it went well so she's scheduled to return in 2 weeks for her 2nd stage of surgery - The Glenn. Be praying for this family as they prepare mentally and physically for this next surgery. Shelby just turned 5 months old last week and her parents can hardly believe the time has come so quickly. We really enjoyed the quality time we got to spend talking with Shelby's mom last night and today. It's so encouraging to see Shelby doing so well - just looking at her, you'd never know anything was wrong on the inside! This was just the little boost of encouragement we needed to keep hanging in there a little bit longer.

2 weeks past surgery!

Today is a beautiful, though slightly overcast, day here in Chapel Hill. It's not too hot today, only in the mid 80's for a change, instead of the upper 90's! It's hard to believe that just 2 weeks ago today, Ethan had his heart surgery! We're so encouraged that he's been doing so well! Ethan had another good night last night, taking all his bottles by mouth! He has done pretty well with his daytime bottles too. His A-line was removed over the weekend, so that's one less line he's attached to, which is good. The down side is that now that the A-line has been removed (it's like an IV, except it's used to draw blood instead of give fluids), if they need to do any more blood work, they have to stick him with another needle.

Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!

We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.

As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!

Weekend comes to an end

Julie and I spent some time at our house in Knightdale on Saturday. It was nice to be home again. Hopefully next time we go home again, Ethan will be with us.

Ethan's heart continues to do well. He is down to only one heart medicine (Digoxin) which he takes orally two times a day. As long as his heart remains in good shape, the next milestone he needs to work on is eating as much as he needs from the bottle consistently. We've already seen an improvement in his eating over the weekend.

He is actually doing well enough to move him out of the PICU (Pediatric Intensive Care Unit) into the CICC (Cardiac Intermediate Care Center). That is a good thing, although we feel he is very safe in the PICU because his nurse is only assigned to him and one other baby.

His EKG showed normal rhythms today. So they'll likely move him out and up the CICC floor tommorow.

Friday morning

Today's another nice day here in Chapel Hill. We are in a corner room and have 2 windows here in Ethan's PICU room so we can either look out the front window and watch traffic on Manning Drive as people pull up to the hospital/parking deck, or from the side window we can watch (and hear) all the drilling and construction going on for the new Cancer Building. Ethan is definitely learning to be a sound sleeper - between the construction noise, monitors beeping in his room, and people talking, he manages to stay sound asleep most of the time!

Last night the nurses tried to re-suture in his central line in his neck, but it fell out so this morning they're going to just do an IV in his foot instead of trying to use the central line again. The central line is sutured in, only because it was the main access point for all his IV drugs since birth, and it tends to get a little heavy so the sutures were helping to keep it in place without pulling on it too much.

His nurse today said he did a great job over night, all his stats were good and all his feedings were done by bottle instead of NG tube! Either nurse Donna (his night nurse this week) has the special touch, or else Ethan is just a night owl! The speech therapist is scheduled to come at noon today to work on bottle feeding some more, which we pray will go well today. We'll give you an update later today on how that went.

12 days old

Today was another good day here at UNC. The speech therapist (Jen) was busy today so she never made it to our room. I (Julie) tried to follow some of the advice she gave me yesterday when she made her initial evaluation. She suggested I try to start the rooting reflex by gently rubbing the bottle nipple on Ethan's top lip until he opened his mouth and started curling his tongue. I also watched his respiration and tried to make sure that it was under 75 before trying to give him a bottle. At his noon and 4pm feedings, he was able to take 20 cc's of the bottle (his goal is 55 cc's) then we had to feed the rest by NG tube.

Ethan was also taken off one of his heart regulation medications, Amiodorone, today. This was the new heart medication that the doctors put him on when he came back to the PICU on Tuesday. This drug was helping to mask the foreign signal that was making his heart beat extra. This drug has a long half life (meaning it stays in his system several days) of nearly a week, so we know that Ethan will be in PICU at least until that medication is out of his system. He also has to get off his other heart medication, Milrinone, before he can leave PICU and be taken back to CICC.

The good news is that we're in great hands here in the PICU and we know God is still in control as the ultimate Physician. We also know that with being here at least another week, we'll get to meet our new found HLHS friend - Shelby and her parents. Shelby is just a little over 5 months old and will be coming to UNC on Tuesday, August 28th for her heart catheterization in preparation for the 2nd stage of surgery. We look forward to meeting this family, as they have been a great encouragement to us over the past month since we found each other's websites. Please be keeping Shelby and her parents in your prayers over the next week as they make the journey to UNC and prepare for the next step in the process.

11 days old

Well today was another uneventful day, which is a good thing! Ethan's heart rate, oxygen saturation in his blood, and blood pressure were all back to normal today. His nurse resumed feeding him through the NG tube that goes directly to his stomach from his nose. A speech therapist came at 2:30 PM to evaluate his sucking and swallowing reflexes. They looked good, but he still has a lot of work to do to catch on to the idea of sucking when he has a bottle in his mouth. His therapist said this is normal for newborns who have just had surgery to have difficulty picking up on the sucking motion (rooting reflex) and she'll work with him slowly each day. She said she wants it to be a positive experience for him so that he will want to do it on his own eventually. He's supposed to be getting a 2oz. bottle every 3 hours so we'll start with the bottle feeding and after about 15 minutes, whatever he has not yet drank by mouth, they'll feed the rest to him through his NG tube.

10:50pm update

Praise the Lord that Ethan's stats are still looking well tonight. For the first time since Ethan's surgery, one of the cardiologists took a good, long look at his heart through an echocardiogram (which looks like an ultrasound of the heart like the cardiologist did while we were pregnant). The cardiologist was very pleased to see that the heart's blood flow, the repaired parts and the Sano shunt added during the surgery all look great.

After dinner tonight, we took a mental break and went out to see a movie. We returned to see him after the movie and he was still doing well! The medications are doing what they need to in order to keep his stats stabilized, so we should be able to sleep well tonight, knowing he's still alright! Thank you everyone for your continued prayers for our sweet little son!