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.

Still in CICC!

Well we've made it 26 hours and we're still here in CICC! I (Julie) talked with Ethan's doc this morning and she said he did well overnight and that we are probably looking at going home in less than a week, as long as we have no other setbacks! Since home is where we desperately long to be once Ethan's doing really well, please be in prayer that everything continues to go smoothly so we can be on our way soon.

In order to be headed home, we finally have been given the goals to work towards to clue us in as to how close we are to leaving here. First, Ethan needs to be completely weaned off of his oxygen (which he's close to right now). Second, he needs to start gaining weight and continue to have a good pulse ox (oxygen saturation level) once he gets off the oxygen. Third, he needs to still work on his feeds and we have to learn how to put in and take out his NG tube (this has to be changed weekly or whenever he may happen to pull it out). Fourth, we have to learn how to fill the NG tube with his supplemental feeds. Fifth, we need to learn about his oral medications - the correct dosage and how often to give it to him. Once we get all these things nailed down, then we should be able to leave!

In the meantime, we're just having a fun time hanging out with him and finally getting to hold him and play with him. We are including some short video footage as promised in yesterday's blog. Enjoy!

CICC AT LAST!

Well it's been 2 days since Ethan's been "ready" to go up to the CICC floor and he finally went up today. He was waiting on a room up there in order to move and one opened up today! He didn't seem to like his thickened formula too much. Maybe they'll make it a little less thick tomorrow. He's still doing pretty well. I got some video of him today. I'll put it on the website tomorrow. They are large files so might take a while to download.

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!

A Little Trouble

Ethan is back in the PICU (pediatric intensive care unit) this morning. His little heart started recieving extra signals to beat causing his heart rate to skyrocket - nearly 200 beats per minute. Though not common or expected, the condition is not rare and is being controlled by the drug Amiodorone. He has been stable for a few hours and his stats look good. It was a very scary morning. Because of his HLHS, any small glitch is very dangerous.

We continue to feel blessed with such awesome DRs and nurses. They have got to be the best in the country. They are personable and compassionate - not only helping Ethan heal, but also making this whole experience easier to deal with.

This is Ethan's first major glitch since his surgery. Hopefully, it will be the last. Even with this scare, we acknowledge that things could be worse - much worse. We knew going into this that hurdles would come up. I think we both thought he was doing so well that this has blown us back a bit. It is important to point out that, although this hurdle has surprised us, it certainly did not surprise God. He knows what is going on. I can't tell you why we are going through this - maybe to stretch us - maybe to grow our faith. Maybe to grow yours?

New Room!

This morning, Ethan got his A-line removed from his hip, so that's one less cord to get tangled up when we hold him! This afternoon, around 3:30, Ethan got moved from the PICU (2nd floor) to the CICC (5th floor). CICC (Cardiac Intermediate Care Center) is where Ethan will remain until we take him home. He still has a private room like in PICU, but this time it comes with a fold out bed/couch for one of us, as well as a full bathroom in-room. His nurse this afternoon said we're welcome to spend the night as much as we want, in fact one of us will HAVE to spend a full 24 hours here with him right before he goes home so we can learn about his routine for meds, feeds, etc.

Ethan's biggest goal at this time is to work on feeding and getting enough calories during each feeding. He should be receiving 26 calories every 3 hours (in a 2 oz. bottle) and it should normally take about 15 minutes for him to finish the bottle but his noon feeding today took me an hour and a half for him to finish the bottle so the nurse put an NG tube back in him to send feeds directly to his stomach. A speech therapist is coming to visit him in the morning to help him work on his sucking motion when taking a bottle. Feeding issues are a common problem for nearly all HLHS babies, but usually they have problems with swallowing instead of sucking. We pray that he will catch on to the sucking pretty quickly so he won't have to have the NG tube much longer.

Ethan's been kind of fussy tonight but he seems to quiet down pretty quick once one of us picks him up and holds him for a little while. It's nice to be able to hold him whenever we want, now that he's had most of his IV lines/monitors removed!

Keep praying for a speedy recovery for our little guy. We are constantly amazed at how smoothly this process has gone and how quick we were able to get moved up to CICC. His nurse in CICC said she expected him to be a few weeks old, not 9 days old! She said he's the best looking "Norwood" (name of his firt surgery) baby she's ever seen!

One Week Old!

Well, on Ethan's seventh day of life, not too much happened. He still is doing very well. Some good news is that he is now on only 1 medication! When he first came out of surgery Monday he was on about a dozen. Because he has been taking milk, they no longer need to feed him TCP (a nutrient-rich IV cocktail) so that's one less line. Sunday morning DRs plan to remove 2 other access lines, the "Central Line" which is in his neck, and the "A Line" which is in his hip. They are removing them because they don't need them! So things are going great!

Bonding with mom

I went back to visit Ethan after dinner at the Ronald McDonald House. A family friend, Shannon, was his nurse for the second night in a row! All the nurses have been great to work with, but it's especially great to be able to sleep at night knowing that we have personal friend looking after our little Ethan. I sat in his room for about an hour just watching him sleep. When he woke up, Shannon offered to let me hold him! I got situated in the rocking chair and she passed him to me. We spent about the next two hours together with me rocking him, singing lullabies to him, and giving him a bottle of breastmilk. I thought that getting the chest tubes and ventilator out was a major accomplishment for the day, but getting to hold him definitely was the highlight! He's been pretty gassy all afternoon and he finally had two stinky diapers while I held him and the nurses even "let" me change them. I was tired after dinner and debated on whether or not to even go see him again tonight, but I'm glad I did! God knew that I needed to be there so I could get that special mommy-son bonding time.


Below are some pictures from the day. There is a before and after shot of his chest tubes and ventilator and also proof of me getting to hold and feed him! Enjoy!

Off the Vent!

He's off the ventilator and breathing on his own fine - with no issues after about 1/2 an hour. He's got some junk in his lungs but that is to be expected. It's coming out fine on it's own anyway. So this will be the last entry of the day unless something unexpected comes up.

A Morning Surprise!

This morning as we entered Ethan's room, there were 2 nurses and a DR working over him. Fantastic news followed. They told us Ethan is doing so well that they feel no need to have him on the ventilator and would like to remove his remaining 2 chest tubes! An hour later now and the chest tubes are GONE! At noon, they'll take out his breathing tube. He reacted a little to having his chest tubes taken out - nothing that endangers Ethan - but there is one level they monitor that could be a few points higher. Pray he handles breathing on his own well. Although on the vent, he is actually initiating almost every breath, so DRs are hopeful he'll do fine on his own. I'll keep you posted. Ethan is still amazing us all. DRs project that by the end of the weekend Ethan will have no tubes or lines attached to him except for a few sensors, an NG tube for feeding him just in case he needs a few more calories than he can eat on his own, and 1 line for IV. God is being so good to Little E. Thank You Lord!

Chest closure complete!

Dr. Mill just came out of Ethan's room and said that the closure went well. He was very impressed with how smoothly things went. We're just waiting around to know when we can get back into his room to see him. Praise the Lord for the continued strength our little boy has had so far and we pray he continues to progress so well!

A Big Day - Thursday 10:35am

I write this from the PICU Family Waiting Room as Ethan is having his chest closed right now. He is being heavily sedated for the procedure. We can't wait to be able to hold him again.

He did great overnight. No hiccups at all! I asked his nurse if anything could be going better. He said no. He is going to be asleep for a few hours after his surgery. I wonder what he dreams about.

Thanks for your prayers, emails, letters, and cards!

He should be out of surgery by noon. I'll update shortly after.

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!

A mother's reflection

We have made it through another day with our sweet little Ethan. I am very encouraged at how well his recovery has gone so far! Nearly all the swelling is gone, and much quicker than expected. This afternoon, the nurse started to wean Ethan off his sedation meds from the surgery. Even though he's still in a deep sleep and on lots of pain meds, he is still responsive to our touch. At one point, Ethan even moved his hand from laying down by his side, to being up next to his head. Dan said he looked like he was posed to throw a football. Not long after that, Ethan then moved his hand back down by his side. Maybe we have a football player in training?!? He has also been wiggling his toes when we touch his feet, and he's even started making faces at us...I wonder what he's dreaming about. Well speaking of dreaming, time for me to get a little shut eye too.

We are staying at the Ronald McDonald House and the accomodations are nice. The only problem is having to get used to sharing a full size bed instead of a king size. Since we made it past the 24hr. hump post-surgery, Dan went back home tonight to get some work done and so I could get a good night sleep. The nurses keep telling us to sleep as much as we can now while Ethan's under their care so we're trying to take them up on the offer. I guess that's one advantage to Ethan being hospitalized, we can get some extra sleep that a lot of first time parents don't always get during the first few weeks of their baby's life!

Thank you everyone for your emails and prayers the past couple of days since Ethan's birth. It's so encouraging to know we have so many people thinking and praying for us. Words of affirmation are my #1 love language so it has been extremely helpful in getting me through these first few days! Now that we're finally getting settled into a routine, we will do our best to keep this blog updated as often as possible. Thanks for being patient in reading our updates. So far we are very pleased that things are going better than we anticipated and pray that Ethan's recovery continues to go this smoothly!

Doing Above Par!

At 2am Ethan had been out of surgery for 12 hours. At the 12th hour, it is expected that hiccups would occur. They didn't. At 24 hours out of surgery, DRs expect that his swelling would really pickup. It didn't. His swelling has gone down from last night. His coloring is normal. His heart rate is great. The oxygenation in his blood is doing pretty great. Everything is going very well. They have already gone through 3 stages of reducing the oxygen content from his ventilator, working towards bringing it down to normal oxygen content like air has. Please just keep praying everything will continue to go so smoothly. Also, say a prayer for my brother, Chris, who had an outpatient surgery this morning. We're blessed with such a great family. God Bless You All!

RELIEF!!

At 2pm, we received the good news from one of Ethan's cardiothoracic surgeons, Dr. Stewart, that the surgery went as well as could be expected! His oxygen saturation levels were a little lower than normal, but by 3pm when the other cardiothoracic surgeon, Dr. Mill, talked to us, the saturation levels were back up into a good range - 83%. Dr. Mill said that they want his saturation to stay in the 75-85% so that is good news! It's 3:50pm and we're just waiting for the nurses to come get us so we can see him!

So we've made it through the first and biggest hurdle - thank you everyone for your prayers today. Everything is going according to plan right now, but the next big hurdle is stabilization over the next 24 hours. Ethan will remain sedated for a couple of days as they wean him off the anesthesia as he recovers from surgery.

As expected with any cardiothoracic surgery, swelling normally occurs within the first 24 hours so our prayer request is for the swelling to be minimal, subside quickly, and there to be no risk of infection.

Sunday

Today we checked out of UNC and came home to K-Town for the night. It is nice to just be here, although we both miss seeing little E. We stopped by Johnny Carino's at SouthPoint for lunch. At one point, Julie was unable to eat for about 32 hours so some good food was definately on the horizon. It is 10pm. We'll leave for UNC at 5am to get to see Ethan from 6am until they take him into surgery at 7am. Ethan is really doing great. He is uncomfortable due to the medicine that is keeping his heart function in good condition until the surgery. Poor guy softly whines every few minutes to let us know he doesn't feel so good. Today, Julie held him and the whines all but disappeared. He likes when we hold his feet. I got some father-son time with him for about an hour. I miss him already! I know you all want to see more pictures. He still is very shy about opening his eyes. Jenny (Julie's younger sister) so far gets the photography award. She took the very first two pictures from yesterday's blog entry. Here are some pics of his Blue Dog, Julie rocking him, and his room with all it's gear. The medical gear looks pretty intense, but the only equipment being used now is a monitoring system for heart and lung function, an IV for fluids, and the constant Prostin drip that keeps the special duct in his heart open until he has his first surgery. I plan to update this blog with status reports from his surgery each time we get an update. Pray hard friends!

Ethan Miles - The Specs

Sorry, I forgot to mention Ethan's specs. He was born at 1:01am. He's 8 pounds 3 ounces and 21.5 inches long. He's got very dark brown hair like Julie's and dark smokey eyes. He's definately a looker!

Pictures!

He's Here!! -Saturday, 10:14am

At about 1:01am Ethan came into the world! He looks so good. We were able to hold him for about 2 minutes each (seemed so short) before they rushed him of to check him out real good. Aside from his heart problem, everything is perfect! Dr. Stewart, the heart surgeon, came by this morning to say Ethan looks great and surgery will be Monday. He also said Ethan will be moved from NICU to PICU this morning which is nice because he'll be in a bigger room. We are on are way over to see our son. We'll get some pictures up real soon.

A Scary Time.. 7:27pm

Julie has been doing very well throughout labor. But, at about 6:30pm we were told that because Julie hadn't progressed in the last two hours, and her heart rate had been running high, a c-section would be needed. Scary! Immediately we began to pray her cervix would open up. 10 minutes latter, the Dr. said she'd gone from 5 to 7cm. Julie was also able to bring her heart rate down, even under these stressful circumstances, through unbelievable focus and determination. She is incredible!

2:20 Update

It's 2:30 and Julie is 80% effaced and 4 cm. dialated. She is not in any pain since she got the epidural about 1:00. Since she only got a couple of hours sleep last night we're going to try to let her rest before things really pick up. Both sets of grandparents are here in the waiting room and both of her sisters and Jessica's husband Brandon. Dan's brother and sister will be here soon. Pray Baby Ethan could be born safely and fairly soon. Thanks!

LABOR DAY!!

It is Friday just after noon. We are at UNC! We checked in last night around 8:30pm after one last stop to Bed Bath and Beyond for some final feel-good items for Julie. There was a lot of action here last night - but not in our room. Seems like a few other women went into labor unexpectedly last night causing Julie's induction procedure to take place at 1am! We were surprised to see that she was already having contractions! Pitocin was started at 5:00am. They had a hard time finding her vein and once they did, it hurt her pretty bad.

I took a shower and flooded the entire room! That was unexpected. At 12:30 they gave her the epidural. I didn't pass out! Julie did awesome. Everyone said so. I was so proud of her. She didn't start feeling the contractions until about 11am although they'd been coming strong every 1-3 minutes. Kristin, Julie's RN, just said to me again "She's doing awesome!"

We'll know in about an hour how much more progressed she is. I'll keep you all in the loop.
Thanks for your prayers!

Week 39

Hard to believe that Ethan will be born in about 48 hours! It's been nice to have the week off of work to get all the last minute details finished. Mom's been a big help this week in helping me get everything ready here at the house. Dan and I go to UNC Hospital tomorrow (Thursday night) to start being induced so we definitely know the wait is almost over! Below is a nearly complete picture of Ethan's nursery mural that mom, Dan and I have been working on for the past week.