Day 11 - Going Home!

Just talked to the cardiologist & he said the X-ray from yesterday looked beautiful! He was very pleased with how Ethan did yesterday & overnight so he feels confident in sending us home this afternoon!

Ethan did have a low heart rate on & off all night but all other vitals were normal so they did an EKG just to make sure his heart is still good & it turned out normal so the doctor's not concerned. He said it's not uncommon for young kids in a deep sleep to have a wide range of "normal" for their heart rate & to occassionally dip low like Ethan did (in the 50s).

He also woke up screaming out in pain a couple times, but we gave him some Tylenol & he went right back to sleep.

So now we just sit around most of the day, waiting for discharge papers to be drawn up!

It will be so nice to be home again! We will miss all the great staff here at UNC - everyone has been a pleasure to work with - from the medical teams to therapists to housekeeping & nutrition. We are so thankful for the wonderful caring staff here that has made this the most pleasant hospital stay ever. We look forward to coming back as a visitor to say hi but hope to not have to be a patient again for a LONG time! :)

Day 10 - evening update

Today was a great day! Ethan successfully dropped from .2L of o2 overnight to .1L around 9am. He maintained his o2 sats all morning so at 1pm, his nurse turned the oxygen off, removed the nasal cannula & he's been on room air ever since!

He also had a great looking chest X-ray this morning so they stopped the IV Lasix & started the oral version. He'll be on that 2x/day for about 6 weeks at home I think. The only problem is that he says it tastes bad so I requested if they could mix it with a flavor for his next dose.

We don't want to get our hopes up yet, but in rounds this morning, the cardiologist told me that if all the above things I mentioned go well today & he continues to get up & walk & practice his deep breaths, then the goal is to get discharged tomorrow afternoon!

So far, everything's right on track so please say an extra prayer tonight &/or in the morning that all goes well between now & 8am when the docs/nurses round again & maybe our next post will be definitive as to whether or not we're going home!

Also, add to your prayers for safety & peace of mind for Dan as he leaves us for a couple days on a business trip. And for a smooth transition home. I've pretty much already been the sole caretaker for Ethan's recovery this week but it's been nice to have the nurses around to get hijn in & out of bed, etc so I don't over-exert myself during this pregnancy. The last 2 nurses were especially concerned about me & went out of their way to help b/c they're afraid I may go into labor early if I overdo it & that kinda freaks them out b/c they have no training in labor & delivery!

Well, time to attempt to sleep on this vinyl couch for hopefully the last time! Will update in the morning as soon as I know the plan!

Day 10

Ethan had a pretty good night, slept most of the way through the 6:30am blood draw, only to wake as they were finishing pulling the needle out! This was an instant answer to a prayer I said as soon as the lab tech walked into the room. He suffered enough with the 3 pokes to start the new IV that I just couldn't bare to see him wake up to pain this morning. We've been awake ever since but are in good spirits today.

The cardiologist today came & talked to me after rounding this morning. He said that yesterday's X-ray looked good so he was going to do another today to make sure everything is still looking good after decreasing the Lasix yesterday. If that looks good, they will switch the Lasix from IV to oral this afternoon!

Dan came over around 10am & he came on the walk down to the X-ray lab with us. It'll be nice to have him here for the day!

Also on schedule for today, they decreased his oxygen to .1L (the lowest possible!) & if he can keep his pulse ox sats at 92 or above until this afternoon, then they'll get rid of the oxygen! Ideally, I'd love for that to happen before we go up to the playroom but I don't want to rush it & have to go back on it (or even worse, have to up the amount of o2).

Day 9 - finally over!

First of all, forgive me if any of this is repeat of my earlier post. Without having a computer the whole time we've been here, all these updates have been typed slowly from my phone & it's not easy to go back & check to see where I left off in my last posting. Plus, 9 days of very little sleep, combined with "pregnancy brain" makes for poor memory!

The morning & afternoon were pretty good. Ethan's managed to stay at .2L of oxygen all day with sats in mid-upper 90s! Hopefully they'll drop him to .1L or nothing at all tomorrow but haven't heard anything official on that yet.

Ethan had another chest X-ray this morning so we didn't make it to the morning playroom time but he walked the whole way there & back, which counted for our first walk of the day.

Then, after rest time & lunch, we were visited by the clowns again, as well as some UNC football players. Since the football guys were not in uniform, Ethan wasn't really impressed to meet them. Wish I had thought to get a picture of them with Ethan but didn't think about it until they were already gone.

Next, we took out second walk to the playroom & stayed the entire 2 hours it was open. There was only one other kid there so it was nice & quiet & we had time to check out all the different toys available! We mainly stuck to playing with cars & tools.

About an hour after we got back from the playroom, it was time for Ethan's afternoon dose of IV Lasix. As his nurse started to clean & flush the line, she determined it had blown so she had to remove it & place a new line. This was by far the hardest hour of the 9 days we've been here. :( They've always struggled to get IV's & blood draws done on his little veins & today was no exception. It took 2 nurses, 3 tries & a total of 1 whole hour of blood-curdling screaming & crying before they finally got a new line placed in his left  foot (same foot as the line he blew yesterday). I'll confess I even shed a few tears as I held his hand & tried my best to distract him & help hold him still. The crazy part of it all is that they are about done with the IV Lasix & want/need to start transitioning him to oral probably as soon as tomorrow (Saturday).

After all of that ordeal, he fell asleep & slept for 2 hours. That gave me a little time to rest & recover before Dan showed up. He stayed asleep long enough to also allow us time to slip off to the cafe for dinner together. Shortly after we returned, he woke up & we spent some time together as a family just resting & watching some TV before Dan went back to the RMH to sleep. We never made it back out of the room for Ethan's 3rd walk of the day but I think that's fine because the nurses said he got plenty of respiratory therapy by crying for an hour straight :(

Well, this post has taken me so long to compose that it's officially the next day now so I better try to get some sleep.

In all my focus on keeping you all updated on Ethan, I think I've neglected to share a personal prayer request of my own. For the most part, I've really enjoyed being pregnant & am extremely thankful to have pretty easy pregnancies, buy this time, the 2nd half of this pregnancy, I've been having some pelvic floor pain. Up until Ethan's surgery, it's been fairly manageable, but recently it's really started to affect my sleep. It's become impossible to lay down to sleep so I have to sleep sitting in a chair or couch, which is not comfortable at all here at the hospital. There are no chairs in our room at the RMH so that's the main reason I've been spending most nights here at the hospital instead of trading off with Dan. So that's one more reason we can't wait to get back home! I did finally call my OB doc today to ask for additional pain relief ideas b/c none of the ideas she mentioned at my last visit have helped so she said the next step is to be referred to a chiropractor. As soon as we figure out when we'll be getting out of here, I'll call & book that appointment.

Thanks, as always, for taking the time to read our blog & continue praying for us. Also, thanks for the comments & words of encouragement. Even though we don' t personally respond to them, please know we read & appreciate rach one. You are speaking my love language by posting them!

Day 9 mid-day update

Today started out rough again with a 6am blood draw - poor Ethan screamed & screamed that it hurt & that the lights were too bright & that he just wanted to go back to sleep. It's hard to see him be in pain & not be able to help him - that's definitely starting to get old for me.  Speaking of pain, he hasn't complained of any in several days, other than saying it hurts his throat to cough.

The blood lab showed he was still a little low on potassium still so we tried hiding it in a glass of sweet tea but that still didn't work.

In rounds this morning, today's cardiologist seems a little more aggressive with treatment (in a good way)! He was surprised Ethan's still on nearly max dosage of Lasix so he nearly cut it in half, still by IV today, but only every 12 hours instead of every 8. This should also help with the potassium issue :)

Also for today, he wants to start weaning the oxygen so we can get out of here sooner rather than later. We're also supposed to continue working on keeping Ethan active & do more breathing therapy to help expand lung volume & decrease fluid. Ethan's down to .2L since about 9am & has been doing great so far with says staying above 92!

Ethan walked all the way to the elevator, rode it down from the 5th floor to the basement, walked down the hall to have his chest X-ray, then walked all the way back to his room without tiring out (about 30 min total) which is huge for him for being only 8 days post-op! We are quite a site walking through the halls pulling our wagon loaded down with a portable oxygen tank, monitor & all the wires & oxygen cannula. It really slows us down but Ethan's being very patient & cooperative.

Time for lunch, rest time, then up to the playroom at 2! Will update again later. Thanks for all your continued prayers!

Day 8 - evening update

We had a pleasant afternoon & evening tonight. We made it upstairs to the play atrium twice today plus borrowed a game between our 2 visits to sit up in bed & play. We were also visited by our pastor this afternoon. While he was here, we got an afternoon treat of ice cream bars & also a visit by 3 clowns!

Then later in the afternoon, Ethan's peripheral IV (PIV) in his foot blew so they took it out. Now all he has is the one PIV in his right hand. Hopefully tomorrow's chest X-ray will look a little clearer & they'll be able to transition him to oral Lasix so he won't need the PIV in his hand & can get that removed too since it's barely hanging on. We also got to remove the gauze bandage from his chest tube removal so we're feeling less & less uncomfortable each day!

Ethan was also surprised with a HUGE Lightning McQueen balloon that he's enjoyed playing with!

Tomorrow he's due for another 6am blood draw :( followed by probably another attempt at trying to disguise potassium in something to eat or drink. Today we were mildly successful at getting him to take his morning dose in a cup of OJ & his evening dose in a cup of Crystal Light lemonade.

Tomorrow we will also have a chest X-ray & continue walking & breathing therapies.

As always, thanks for checking in on us & continuing to keep us in your prayers!

Day 8 & counting...

Well, things are moving along slower than we were originally told they would but the doctors in rounds this morning aren't concerned, they said it's normal for this recovery to be a little longer than the last one because more of the body is having to adjust to the new blood flow. I asked about a possible window for discharge & they're saying Tuesday or Wednesday would be optimistic.

Not much new to update since mid-day yesterday. In fact, yesterday sorta felt like a day off. We didn't take as many walks but the ones we did take were longer than the ones we took downstairs in the PICU. We spent a lot of time trying to just catch up on rest mainly. In fact, Ethan's still asleep at 9:30am as I'm writing this!

The plan for today is to get at least 3 walks in, plus really work hard at taking BIG, deep breaths to try to open up his lungs more & continue on IV lasix & the other IV diuretic to also help pee off the fluid buildup. He's still on .3L of O2 & we're not going to change anything today.

We plan to make stops at the play areas during the walks so he can have a little fun & forget the fact that he's sitting up outside of his bed/room.

We also plan to work with the respiratory therapist - blowing bubbles, blowing pinwheels, etc to help with the deep breathing exercises.

Please keep up the prayers - we still need them & know they are working! God even answered a small one for me at 5:30am when they came to draw blood for labs & couldn't get any blood to flow so they had to dig around a little. Poor Ethan was crying & saying ouch but as soon as I silently prayed, the blood came!

Day 7 - mid-day update & picture

Ethan & I slept well overnight once we finally got settled into our new room - we actually got to "sleep in" until 7:40am! That's late for us here at the hospital but it is about our usual waking time at home.

Nothing new will be happening here today except a visit to the top floor playroom! There's also a small play area here on this floor, so that was a welcome surprise on our morning walk.

Ethan's still on a little bit of oxygen (.5L overnight & down to. 3L since about 9am). In morning rounds, they decided that weaning oxygen was low priority & since Ethan's not complaining about it, I'm fine leaving it on him for now.

We're also scheduled for another chest X-ray but just waiting for an appointment time. Downstairs in the PICU, they brought the portable machine to us but I guess now that we've "graduated" to the floor, we have to travel to the X-ray floor to get it done.

That's all for now. Time for lunch,  rest time (we're watching a Mickey Mouse Clubhouse DVD) then a walk up to the playroom at 2pm!

The picture is from him sitting up on his own, playing with the train table here on the floor! I think this was a good distraction b/c this was the first walk where he didn't fuss at all & he even made the loop around the whole floor unit, not just the end of the first hallway & back like we were doing downstairs.

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!

update

Oops, sorry for not posting an update last night after Ethan's procedure. We were all exhausted and went to bed early last night. All went well, we were told on Friday that we had to be there at the hospital to check in at 7am, the procedure would start at 8:30 and we'd be leaving by 10am.

Well nothing ever seems to go according to schedule in a hospital! We got there at 7am, got checked in, hoped Ethan would go back to sleep but he didn't. He started getting fussy and hungry but wasn't allowed to have anything since midnight so we did our best to keep him preoccupied with toys, walking the halls, etc. They finally called us in to get vitals and sign the consent form a little after 8am. Then more waiting... the anesthesiologist finally took Ethan at 9am. We ran and got breakfast in the cafe and quickly returned to the waiting room because we were told that his procedure would last anywhere from 30min-1hr. Sitting there in the cafe brought back so many memories from Ethan's first two surgeries and we both thanked God that this was such a minor OUTPATIENT procedure with no chance of being admitted! We got to go see Ethan about 10:30 then we got discharged around 11am.

After discharge, we went up to the CICC floor (step down unit after his heart surgeries) and visited all our favorite nurses. They were excited to see us and see how big Ethan is getting. They love having their patients come back and when we were in the area last month for the parent panel of the cardiology conference, they reminded us to come visit their floor any time we're in the area. Ethan was still groggy from the anesthesia but he did manage to give the nurses a little smile.

Ethan slept the whole hour-long drive home plus the time it took for us to run by Target to get his 2 prescriptions filled - one was an antibiotic ( to prevent infection) and the other was Tylenol with Codeine. He'll be on the antibiotic for 5 days and the Tylenol just as needed. Once we got home, Ethan had a bottle with his Tylenol w/codeine then slept from 3:30-7:30. We woke him up to feed him and give him his antibiotic then he went back to bed around 9 and slept till 6:30 this morning. He's slightly off schedule but we're catching up.

He doesn't really seem to be in pain today, which is amazing! He's back to "slithering" on his tummy (he can crawl but doesn't like it as much), which makes Dan cringe - afraid that being on his tummy is causing him unnecessary pain - but it doesn't seem to bother Ethan a bit! What a tough little guy we have!

He's got a clear bandage over his surgical site which will fall off in 3-10 days but we've still been instructed to not immerse him in water (no baths or swimming pool) for 3 whole weeks! Poor little guy, I know how much he'll miss that - he's getting to be a good little swimmer. :-(

One final update - Dan took the whole day off to be with us yesterday and as we were letting Ethan watch a cartoon before taking his nap, we both got to see him wave for the first time (at the cartoon characters). It was so cute! And today, I introduced Ethan to bananas. He's had the Gerber baby food but never had the real thing until today and he loved it.

Thanks for checking in on us. We are so thankful for all the fervent prayers and continued good health of our precious son. Tonight we're off to celebrate the life of another special person - my sister (Ethan's aunt) Jessica. Happy 25th birthday sis/aunt!

Picture Time!

Ok, so I've been so busy lately that I haven't had much time to upload any pictures and our memory card was missing for a few days but I've finally got some new pictures to post!

Ethan on his first wagon ride - just hours before we left the hospital last month!

Ethan asleep on the couch - he buried himself under the red blanket
(don't worry, his face is peaking out so he can breathe - what a smart kid!)

Do we have a future musician in our family?

Ethan having fun in his swing with some of his new toys!

We're Home at Last!

We slept in this morning at Ronald McDonald House (RMH), had brunch there, then called Ethan's floor to check on him around 10:30am. His nurse said he did great all night long - with feeding and with his weaning off oxygen. He was completely off when we called, but still had the cannula tubing across his face, just in case. We got to the hospital around 11am and about an hour later his nurse got brave and took off the cannula and continued to monitor his oxygen sats. He managed to stay in upper 80's! Then the doctor came by and said Ethan was looking so great, that he felt comfortable discharging us if we felt comfortable taking him home! So it took a while to get discharge papers printed and we finally got out of there at 5:30pm.

We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!

Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.

Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).

Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.

Still on oxygen

Ethan wasn't doing well off oxygen - his sats dropped from the mid 80's to mid 60's almost right away so he's been back on .2 of oxygen since my last post this morning. He has to consistently be in the mid 70's-mid 80's in order for them to let us go home.

Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.

Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!

More progress

Since we're so blessed that Ethan's doing so well, Dan has decided to go in to work today. I got to the hospital this morning and Ethan's oxygen had been moved down from .3 liters to .2, then about 30 minutes later, his nurse moved it down to .1 and they'll monitor that for a few hours. If that goes well, then she'll try taking him off oxygen and see how that goes - that's the main thing keeping us here, so be praying that goes well. It's great that he's been able to be so mobile so soon afer surgery! I may even get to take him upstairs to the playroom after lunch. There's an infant play time from 2-2:45 pm that his nurse just told me about today, so that will be fun!

Ethan just got his chest tube bandages and incision bandages removed while I was typing this post and the nurses are very pleased with how well he's healing. Then 2 cardiology residents came by and shut his oxygen off completely so they will monitor that for a couple of hours. Hopefully Ethan will take his nap and his oxygen sats will continue to look good during that time so we can get out of here soon - the residents said we may be out sometime this weekend if things continue to go this smoothly. They credit his success to how big he is, but we know all the real credit goes to our Heavenly Father for helping get him so strong and healthy leading up to this surgery.

Praises:
-Thank you Lord for the great medical staff here at UNC Hospital
-Thank you Lord for the speedy recovery this time around
-Thank you Lord for no signs of infection nor sickness while we've been here
-Thank you Lord for all the prayer requests already answered including our biggest concern about Ethan's interest in eating after being intubated/extubated


Prayer Requests:
-Pray Ethan continues to do well being off oxygen
-Patience for us if he does need to go back on a little oxygen since that's the only thing keeping us here
-Continued healing at such a speedy pace
-Pray for continued interest in eating (it's hard staying on a schedule here at the hospital with nurses coming in to check on him and update us)

Day 2 in the CICC

Dan and I have enjoyed getting caught up on some much needed sleep, not having to get up and feed Ethan during the night! We got over here to the hospital around 10am. One of the cardiologists and his outpatient nurse were in his room, they are still saying he's doing great! He had a chest x-ray this morning and they said it looked a little better than yesterday, and it was already looking good yesterday! Praise God for what a smooth journey this has been so far, if things continue to go this well, we may be out by Monday.

The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!

Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.

On the CICC floor!

Well around 5:00 pm, we officially got moved upstairs to the CICC (Children's Intermediate Cardiac Care)! I never thought I'd say it's great to be back in any hospital room/floor, but this is kind of like the "celebrity" floor because the rules are so lax, plus there are full bathrooms and a fold out couch in each room, so we have the option for one of us to sleep here with Ethan if we want.

We saw both of Ethan's heart surgeons early today when we were still down in the PICU and they were both amazed at how fast Ethan's recovering! His main surgeon, Dr. Mill, told us yesterday in the debriefing that post-Glenn surgery patients usually spend 2-3 days in the PICU then 5-7 in the CICC. The main thing we "work on" is the eating, but Ethan's been doing pretty well with that, at least up until dinner time. Now that he got moved up here, he's only been interested in eating 2oz. instead his normal 4oz. I think part of it is that he's "clogged up" - he hasn't pooped since yesterday, so that's our big goal for the night - getting unclogged so he'll have a normal appetite again! LOL

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!

Cath complete!

Well Ethan's heart cath went well! Dr. Robinson (Ethan's cardiologist that he'll continue to see on a regular basis in the future) came and talked to us while Ethan was in post-op and said that Ethan's heart looks great, the Sano shunt is working very well and is one of the best he's seen yet from a Norwood surgery! Ethan's pulmonary artery is also a great size (it can often be small) for his age. So the good news is that there's nothing wrong with his heart at this time that would warrant needing to go back in for more surgery at this time. We were encouraged and surprised to hear that the medical team had him completely off oxygen (by accident) during the cath procedure and his sats stayed in the upper 70's-low 80's!

Ethan's still sleeping right now, the anesthesia still hasn't worn off so they have put him on .25ml of oxygen while he sleeps, then Dr. Robinson wants to try to have him start being weaned off the oxygen again. Whenever we do go home, we will probably still have an oxygen tank at home with us in case we still need it. One new thing we learned from Dr. Robinson is that all babies tend to have higher pressure in their lungs the first 6-8 weeks after birth, which limits the amount of blood flow to the lungs, but that pressure should decrease by about that time. Since Ethan will only be 4 weeks old tomorrow, he's been ahead of the game with the rest of his recovery so we just need to give him some more time to let that pressure decrease as he gets older and with the HLHS, it just might take him a little longer.

Continue to pray for patience for us and the doctors as we wean him off the oxygen. Pray that his sats would be able to remain in the 70-85% range, and that we can get home soon with him, whether or not we have to keep him on oxygen. We already have a portable tank here in his CICC room, as well as a large tank waiting for us at home in case we need it. Also, praise God that Ethan's off his NG tube and eating well. He's averaging 5 minutes feeding time to finish his entire 60-70cc bottle (which is just over 2 oz.), instead of the 15-20 minutes it's taken him the first 3 weeks of life. God has been so good to us through this journey - in the doctors rounds this morning, our speech therapist overheard the docs saying that they're very encouraged that Ethan's eating like a champ!

Thursday Night in the CICC

This morning during rounds, the Chair of Children's Cardiology spoke with me about Ethan's condition. He had a lot of good things to say. In fact, Ethan's whole team is quite pleased with many aspects of his recovery. He continues to eat like a champ. He has come a long way in that area. His heart rhythm and blood pressure continue to be in the near optimum range. Ethan has been spared many of the complications that often can lead to a very dangerous journey for HLHS babies.

One area DRs are concerned about is his oxygen saturation (we sometimes call this "sats" or "pulse ox"). Ideally, his sats should be 75-85%. Ethan's sats are in that range but only due to the assistance gained by being on oxygen. Each time we try to wean Ethan of the oxygen, his sats drop. Sometimes they go back up again. They go back up - they come down. And all the time to "safe" levels - but not levels we would want Ethan to be in all the time. When he sleeps deeply, his sats have been dipping below 70%. Again, because we are monitoring this closely, and increasing oxygen improves his sats quickly, Ethan is not in danger during these changes. That being said, Ethan should be off of oxygen by now. DRs don't know why his sats are fluctuating so much. To find out, Ethan has been having regular echocardiograms (bi-weekly at least). They've been inconclusive in regards to saturation but have reaffirmed that his heart is doing as it should be physiologically - which is great.

As an effort to learn more about his blood flow, internal pressures of heart chambers, and arteries and veins in the heart and lungs, a cardiopulmonary catheterization has been scheduled for Friday morning at 8am. There is little risk associated with the procedure. This procedure is done under local anesthesia and is performed in a special lab - not an OR. The procedure, in short, consists of threading a small tube with a pressure sensor on the end of it through his veins, heart, and arteries. Hopefully the DRs will be able to further understand the particulars of Ethan's heart, lungs, and the veins and arteries related to the two. Hopefully some light will be shed on why Ethan's sats bounce so regularly. His sats issue is the last thing that needs to be addressed and rectified before Ethan can go home.

Please pray for Ethan's safety, steady hands and clarity for all those involved in the catheterization, and that Ethan's sats would improve with no further non-medicinal intervention.

Wednesday afternoon

Well we're still trying to figure out Ethan's oxygen saturations. He still sats in the 60s when he's asleep so he has to be on a higher oxygen concentration, but then when he's awake (and especially when he's eating) his sats are in the upper 70s to low 80s so the nurses have to turn the oxygen back down to almost nothing. A big oxygen tank and a portable oxygen tank have been ordered for us to use whenever we go home, if he's still needing it by then. If we do have to go home with oxygen, he'll have to be on it 24hrs/day. The doctors don't usually send HLHS babies who've had the Norwood (first surgery) home on oxygen but since this is really his biggest issue, they're considering doing it since he's on so little oxygen most of the time (.1-.4 ml/hr).

So as stated in yesterday's blog, oxygen sats are the biggest prayer request at this time. As much as we still long to be home as a family, we are waiting on God's timing to make sure that Ethan's body is strong enough and getting enough oxygen before we go home. Becoming a new parent is challenging enough without the added tasks of all the medical equipment we'll be taking home - pulse oximiter (to measure oxygne sats), NG feeding tube and pump (to supplement his feeds if he can't take his whole 2oz. (60-65cc) bottle, and now an oxygen tank.