Home at Last!

We have had a great first 24hrs at home! We are so thankful for our friend, Rebecca, from our small group at church to come pick me and Ethan up at the hospital yesterday afternoon since Dan's out of town for work for a couple days.

Ethan is enjoying being back home in his own familiar surroundings. Last night, I let him take a long bath (just had to be careful to not submerge his chest in water) since he'd only had a couple sponge baths in the hospital and had not had a chance to get his hair washed in nearly 2 weeks (poor kid!). It was hard convincing him to go to bed last night because he wanted to play with every single toy for a little bit but after the bath and bedtime Bible story, he fell right asleep.

Ethan was able to sleep 12 straight hours and I slept 9. Another friend from our small group, Kyla, came over this morning to watch Ethan for a couple hours while I went grocery shopping. We have another friend from church coming to bring us some dinner tonight! 

Ethan's much more active now that he's home, but still has some trouble bending over and also sitting/standing on his own. He also has been walking hunched over for the past couple of days. He doesn't say he's in any pain so his nurses think he's just being protective of his chest and will straighten back up over time.

We have a post-op visit with our pediatrician this Wednesday. They'll assess how he's doing and also remove the sutures from his 3 chest tubes. Then we'll have a follow-up visit with his cardiologist at the Raleigh Clinic at Wake Med at the end of this month. The only meds we came home on are Lasix and Aldactone. Both are diuretics that we will eventually be weaned off of, which is good because Ethan puts a pretty big fuss about taking them and we have to take them twice a day.

Thanks, again, for everyone who has followed our blog and prayed for us. Now that we're home, we'll still keep the blog going but will not update quite as often. Hopefully, our updates will be more  about life and less about medical stuff for a while. We look forward to slowly getting back into a routine with fall just around the corner. We are supposed to stay home/away from large crowds & obviously ill people for at least another week, then we can start going back to church, Community Bible Study, & more. We look forward to seeing all our friends again! Ethan still will need to take it easy once we resume those activities - no rough play, no playgrounds, no sports, no tricycle riding, etc. for another 6 weeks while his sternum heals completely (just in time for the new baby to arrive!), but otherwise, his nurses want him to stay active to keep the fluid build-up in his chest at bay.

last RSV shot!

I nearly forgot about the appointment until about 30 minutes beforehand, but we did make it to the peds for Ethan's last RSV shot of the season! We won't have to do this again until October or November so that will be a nice break! Ethan's weight is looking good, he weighed in at 18lb. 11 1/4 oz. (8.5 kg) today so I'm pleased!

As always, thanks for checking in on us. Things are going so well that we haven't had too much to report lately. We praise God for Ethan's continued good health and continue to pray for comfort and strength for baby Annabelle's family as they grieve her loss. We also ask for prayer for baby Julianne as she goes for her swallow study tomorrow. She's been on a feeding tube her entire life and if she doesn't pass, then the doctors are talking about surgically placing a G-tube button on her stomach for feeding so she doesn't have to have a tube down her nose any more. Please pray God's will to be accomplished for her tomorrow. I know her parents desperately want her to pass but, more importantly, are trusting God for whatever the outcome!

Cardiologist checkup

Our cardiologist greeted us by saying, "well I think you set a new record for how quick you got out [of the hospital] after the Glenn surgery!". Of course this was extremely exciting to hear! Ethan weighed in at 15 lb. 6 oz., so he really hasn't gained any weight since surgery. But his doc's not concerned right now, since it's only been 2 weeks and I told him that we were all sick with the stomach bug the first week we were home.

Ethan had his echocardiogram done on his heart and the function looks great! The doc has cut back our Lasix (diuretic med) to once a day instead of twice. We go back again in 6 weeks for another checkup and he thinks by that time we'll be able to quit the Lasix completely - which will mean we'll be completely drug-free for the first time ever! What will we do with ourselves, not having to give daily meds, I can't wait!?!

Our next pediatrician appointment is on Monday, 2/11 for Ethan's 6-month checkup. Poor guy, they always schedule his appointments for the day he turns that many months old - what a way to celebrate, huh?

Well that's about all... poor Tarheels for losing to Duke last night, but we'll have a rematch at Duke later in the season so hopefully we'll be able to get bragging rights next time! :-)

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.

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!

November Cardiologist Checkup

Well it's hard to believe a whole month has passed since our last monthly checkup at the cardiologist office! Ethan still seems to be doing well. They did another echocardiogram (ultrasound of his heart function) and from what they could see, the right ventricle (RV) functions looks good and there's minimal leakage from the tricuspid valve (same as it's always been). Ethan's oxygen sats have been remaining in the 70's - low 80's (although we could only get the sat to read 58-62 at the office today but that's because they're machine is about worn out so they're going to order a new one) and he now weighs 6.0 kg (13 lb. 3.5 oz.) so Dr. Robinson is pleased with his growth and heart function.

Dr. Robinson also told us we can stop one of the heart meds - Digoxin once we run out (which we ran out last night!) and we can also stop the Lasix (diuretic). So we're just down to one heart med - Enalapril (2x/day) and baby aspirin (3x/week)! He also told us that it's time to start the ball rolling to get ready for the next heart surgery. The 2nd surgery usually takes place between 4-8 months old, based on the oxygen sats and Ethan's weight gain. He's right on track for both for now but we don't want to get caught off guard when the sats start to drop so we're going to go ahead and book the heart catheritization for December and plan on having the second surgery a few weeks later (sometime in January).

Now that we know a timeline for the 2nd surgery, and we're getting ready to head into cold/flu season, we have to be extra cautious about keeping Ethan healthy. He needs to be healthy for at least 2-4 weeks prior to the surgery so that there's less risk of infection so we will keep him isolated from the public as much as possible from now until his next surgery. We should hear back from Dr. Robinson's office before Thanksgiving for the date of the heart cath and we'll let you know the date so you can be praying. If you've been following us since Ethan's birth, you may remember that he had a heart cath the day before we got discharged, so at least we know a little bit about what to expect. He will be anesthetized and will probably be sleepy the rest of the day, but it will probably be an outpatient procedure if all goes well.

Thanks for your continued prayers! Also, we want to thank UNC Hospitals for all the great work and personal care and attention they have given us. Today is the NC Children's Promise Telethon/Radiothon to raise money for the UNC Children's Hospital where Ethan spent the first 4 weeks of his life and we want to thank everyone involved in donating today to help make the this Children's Hospital what it is. We are so blessed to live so close to such a fabulous facility! If there are any causes worth donating to this year, this radiothon would be my pick - just to be able to give back to the place that saved our sweet boy's life! Please consider donating if you have money to spare - even a few dollars will make a difference for them. http://www.ncchildrenspromise.org/radiothon.shtml or 1-866-9-NC-KIDS.

5 weeks old

It's hard to believe that our son turns 5 weeks old today - my how time has flown by! This has been a busy week for us so I'm sorry for the long delay in blog updates. We had a great time Wednesday night visiting baby Shelby and her parents at the RMH. Ethan slept most of the time we were there and Shelby just wanted to play the whole time. We managed to wake Ethan up for at least a few minutes to get some cute pictures of the two of them together, which I'll try to post soon.

Speaking of Shelby, her surgery went well and recovery's going alright. They have a minor setback with her left diaphragm being partially paralyzed, either from the surgery or from the central IV line they put in her neck. Worst case scenario, another surgery will have to take place to work on the diaphragm and best case scenario, the problem will fix itself in time. So please keep her and her parents in your prayers. For more information on her, please visit their family's blog: www.caringbridge.org/visit/shelbyglover.

As for Ethan, we went for our first follow up cardiologist appointment on Thursday. Ethan's cardiologist - Dr. Robinson - also has a clinic at WakeMed Hospital which is only about 20 minutes away instead of UNC being an hour away. Ethan got all his vitals taken (blood pressure, pulse ox, weight and temp) and everything is looking great. He also had an echocardiogram (ultrasound of his heart like we did 2x while I was pregnant with him). Dr. Robinson was very pleased to see that everything is working great. He told us we can cut back on some of his meds - give Lasix only once a day instead of twice and stop the Prevacid for reflux (only use it again if he seems to need it). By next month's appointment, we will probably be able to stop the Lasix completely, and also probably stop one of the 2 heart meds! We can also stop keeping the pulse ox on him all night long, and just do one spot check each day (usually when he's asleep).

Thursday night we went over to see Ethan's cousin's - Rebecca and Marissa - that live in the first part of our neighborhood. Rebecca turned 5 that day so we had a private little party for her. The big party with all her friends and the rest of her extended family is today (Saturday) but we didn't want to expose Ethan to all the possible germs of other kids so we're staying home.

Friday, the home nurse came to do vitals. Ethan now weighs 9lb. 4oz. and is looking great. His pulse ox sats are looking good - staying in the mid 70s where they should be for an HLHS baby. We will have the home nurse come twice next week as well, then probably cut back to once a week. Ethan's also doing great with eating - he's taking a whole ounce more per feeding (and sometimes that's not even enough!) than he did when he came home last Saturday (hard to believe we've been home a whole week already!).

Also on Friday, my parents moved out of our house and into their new house in Wake Forest (about 15 minutes away). So, needless to say, things were quite busy this week around here. For those who don't live locally and may be reading this, we had a big thunderstorm last night (Ethan's first!) with lots of rain and even some tornado warnings nearby but we're all safe. We got lots of rain, which we desperately needed because of the drought we've been in this summer. Now it's bright and sunny and slightly cooler today. Glad to finally be getting into some cooler, fall temps!

The only prayer requests at this time for Ethan are just that he continues to have good oxygen sats and that he continues to gain weight.

parent training

Yesterday (Saturday) was a long, busy day of parent/nurse training here at UNC. So busy in fact that we didn't even have time to go see Carolina's first game victory of the season (GO HEELS!!! what a great start to the season!) .

We got to mix all his thickened bottle feeds yesterday, as well as getting to actually feed him. Friday he did very well and took all his bottles without need of the NG tube. All the excitement must have worn him out because he was only able to take about half of each bottle and had to be fed the rest through NG tube. Speaking of the NG tube, I (Julie) got trained on placing the NG tube down his throat so that I'll know how to do it when we get home in case he still needs it. Today, it's Dan's turn to learn how to place the tube. Ethan also was put back on a little oxygen on Saturday, not because his pulse ox was lower, but just because the doctors wanted him to have it for one more day. Also, we learned yesterday that Ethan has a little reflux so he's on one more medication - Prevacid - that he'll have to have once a day.

Also, with tomorrow being a holiday, it looks like we may not get out of here until closer to Tuesday now instead of today or tomorrow. But that's ok, because we'd rather be here where he can be watched closely one more day by the hospital staff, than to be home on a holiday when not many places are open.

Thanks for continuing to keep us in your prayers, the light at the end of the tunnel is getting brighter each day. Not long now until we're all back home where we belong!

Planning to visit Ethan at UNC on Tuesday?.....

...CANCEL YOUR TRIP! Ethan is going home to be in his natural habitat! Gray-C is ready. Mom and Dad are DEFINATELY ready! DRs say Ethan should be ready to go home on Sunday or Monday. He might go home with an NG feeding tube that goes down his little nose into his throat, all the way to his stomach. We've got a little machine to measure the oxygenation of his blood once a day. All in all, we are so used to being around this type of medical equipment, it shouldn't be a very big deal. He'll be on 3 medicines - all taken by mouth. He is currently off his oxygen... we tried to take him off it before and he wasn't quite ready. He's been off it for 6.5 hours and his stats are still good so he might stay off it this time. Thanks for your prayers, thoughts, emails, and letters. They have made these 23 days much easier to deal with and have given us supernatural peace.

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.

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.

Everything is going GREAT!

Ethan's status remain to be great. DRs continue to take him off of some meds and lower some other medications because he's just not needing them anymore. His swelling is all gone. They continue to bring his oxygen enrichment of his ventalator down toward "air-like" levels. His oxygenation levels are even better than yesterday. They are actually where they need to be for him to go home. The plan had been to take him of the ventilator Friday but he is doing so well, they've moved that up a day to Thursday - tomorrow! Tonight they will start feeding him some of "Mom's Finest" through an NG tube that goes into his stomach. We will likely be able to hold him again Friday! Today he spent a good part of the day with his eyes open, alert, and looking around. It was really nice to see those eyes again. We hadn't seen them since Sunday morning.
I'll try to update at noon tomorow, or after they take him off the vent, whichever comes first. Everything is going GREAT!