Christmas pictures!

As mentioned in our last update, we do have some Christmas pictures and some pictures from our trip to Tennessee last weekend.

Our trip to Opryland Hotel in Nashville, the whole inside was decorated like this, with a riverboat ride in the middle of the exhibit below these lights.

A view below all those lights, some smaller ponds and greenery near the river.

An outdoor nativity exhibit - imagine that, a biblical display in a public place!

Ethan taking it all in!

Daddy (Ethan's Pop-Pop) and his girls (Ethan's mom and Aunt Jessica & Aunt Jenny) in front of a huge Christmas tree made entirely of Poinsettas!

Ethan with his Mommy, his Pop-Pop, and Aunt Jessica.

Four Generations: Frances Wrinkle (Mam-ma), Frances' firstborn- Rhonda (Mimi), Rhonda's firstborn - Julie, and Julie's firstborn - Ethan!

Well that sums up the highlights of our trip to Nashville to see the Garretts (Julie's dad's family) and then to Knoxville to see the Wrinkles (Julie's mom's family). I think we also have some pictures from Christmas day to come later. We just got a new digital camera for Christmas so we're still experimenting with it. Hopefully we will have some good Christmas day pictures to share.

Thanks for continuing to think and pray for us. We are so blessed to have Ethan in our lives and can't imagine life without him. Thank You Jesus for making Christmas special for us this year by giving us the gift of a son, just like you were a gift to Mary & Joseph so many Christmas' ago!

More family updates

What a blur this last week has been! First, my grandpa's health rapidly declined since my post last week. In fact, just 4 days after I requested prayer, he went to be with the Lord. On Monday, 12/17, he slipped into a coma and then by the following night, he breathed his last breath. My dad and his 3 siblings were all able to be there with him to say goodbye in his final moments, including my aunt Jo who had been in Korea with her husband for the past week on business. She managed to get to my grandpa's side, for his final 3 hours. So...Tuesday night mom called us and told us to get packed and ready to leave the following morning for a 12 hour drive to Nashville, TN for the visitation and funeral. Ethan was my Papa Joe's only biological great-grandchild and I wish they could've met, but Papa Joe at least got to see lots of pictures when my sister Jessica and her husband Brandon went to visit him last week. Papa Joe loved children and Jessica said that despite how sick Papa Joe was, just seeing the cute pictures of Ethan brought a big smile to his face!

Ethan did well with the car ride, he slept most of the way there and most of the way back today as well. Despite the unfortunate circumstances, it was nice to be able to get doctor's approval to travel with Ethan and let all the extended family meet him! Everyone seemed to be healthy, which is good because he got passed around to everyone! And on the way back home, we made a stop about 2 hours into our journey in Knoxville, TN to see my mom's side of the family - her 2 brothers and mom. Ethan is my grandma's only biological great-grandchild as well, so he's now got one more "claim to fame" to making him a special little boy!

Oh, and most important update of all...as we were loaded down with bags in hand, about to get in the car to start our journey on Wednesday morning, UNC Hospital called with Ethan's surgery date. We are scheduled for his 2nd heart surgery on Tuesday morning, January 22nd, with a pre-op outpatient appointment on Friday, January 18th. So please keep us in your prayers that Ethan (and we) can stay healthy until surgery time. This will mean we will need to really crack down on keeping him and us isolated as much as possible. We usually "cheat" and go out to eat or go shopping at least once or twice a week. Being around people we know is hard enough, because everyone knows his situation and wants to see how he's doing, but now we're also facing strangers in public who can't resist this cute little kid. We stopped at Cracker Barrel twice on our trip - once going there and once coming back. Both visits, we had complete strangers come up and touch his face and hands - which, of course, made us cringe as we watched Ethan start sucking his fingers and rubbing his face before we could get out a wipe to sanitize him!

Well it's late and we've had a long couple of days so we're off to bed. Thanks for reading our lengthy update and continuing to lift us up in your prayers. To summarize, here's our current requests:

- Pray for our family, as we continue to grieve the loss of Papa Joe Garrett over the Christmas season
- Pray for health over the next month for Ethan and me and Dan
- Pray for wisdom for Ethan's doctors and surgeons as they prepare for the 2nd surgery

Merry Christmas to everyone! We will post more pictures during the week of Christmas!

Family updates

To begin, thanks for your continued prayers for our family. Dan's foot seems to be doing a little better, thanks to the pain med and him staying off of his foot as much as possible. His doctor has credited his foot troubles to an "accessory navicular" - basically a fancy way of saying he's got an extra bone. It will continue to act up unless he wears his supportive athletic shoes (which isn't possible at work most of the time) or else he goes for surgery. But surgery is not something he's really interested in doing!

As for my grandpa (Papa Joe), he is constantly keeping us on our toes, one day he's looking like he's going to be healed then he gets bad the next day. His staph infection and pneumonia seem to be getting better but he's still on oxygen. He got moved to the ICU yesterday and his doctor last night didn't think he'd make it much longer, but today's doctor is a lot more optimistic and thinks he will be just fine and probably be moved out of the ICU tonight or tomorrow. He's still not out of the woods yet though, he's only slightly conscious at this time and could really use a good night's rest. Hopefully, when he moves out of the ICU, he will be moved to a private room so he can not be so disturbed by the other patients that he had to be with when he was in isolation for the staph infection. Please continue to pray for him. I did get clearance from Ethan's doctor that it's OK to make the 10 hour drive to Nashville, TN to see Papa Joe if we think he's getting close to death.

As for Ethan, he continues to do amazingly well. Even though he was awfully fussy and clingy on Tuesday and Wednesday, recovering from his 4-month shots, hehas managed to keep us entertained with his giggles as we try to cheer him up! Here are a few recent photos of him for your entertainment as well!

Ethan laughing at Daddy!

Sportin' a mohawk!

Watch out mom, you just think I'm cute now...

Praisin' Jesus in my sleep!

Not another bath!

Cross-eyed cutie!

4 month checkup!

Ethan is 4 months old today! In recognition, I did the not-so-pleasant task of taking him for his vaccines and checkup at the pediatrician. We've seen a different doctor every time we've gone, which I guess is ok for now so that we get to test all the docs out to see who we like best. Today we saw Dr. Burroughs and he seemed to be really nice. He's also had heart surgery so the first thing he said when he saw Ethan was, "hey, we've got the same scars, although yours are a lot newer than mine!". He asked if we were being treated at UNC and told us to say hi to his friends over there! Dr. Burroughs also mentioned that his grandson also has a CHD, although not HLHS but nonetheless, he's still VERY familiar with HLHS! This was encouraging to hear, I've really only seen one other doctor in this pediatrician office that was familiar and comfortable with Ethan's condition so I think I'm getting it narrowed down as to who I will try to see from now on. Also, based on my conversations with Dr. Burroughs, it sounds like he may be a Christian so that's another bonus!

Ethan's checkup went well, he's growing well and looking good! According to today's weight, he's actually down 2 ounces (14 instead of 14 lb. 2oz. at UNC last week) but I'll weigh him on our home scale tomorrow just to double check since that's what I'm used to him being weighed on. Dr. Burroughs said it's ok to start trying to give Ethan some solid foods, but since he's already getting rice cereal in his bottle to thicken it, he said it's ok to just stick with that for a little longer. We may wait until after the 2nd heart surgey next month to start the solids.

In other news...Dan's foot pain has been acting up again. Last time it happened was Thanksgiving and it lasted nearly 2 weeks, with Dan not seeing a doctor - just trying to stay off it and keep it wrapped in an ace bandage. This time, I finally convinced him to go back to the orthopedist to have it re-examined. Since it's Dan's right foot (driving foot), he stayed home from work and I had to take him to his doctor visit. He was told he basically has a very flat foot and a loose ankle that makes his foot move more side to side than up and down like it should. The doc told him about some stretches to do and also prescribed him some prescription-strength Aleve. So that's been my day, running all over town for doctors appointments for my 2 boys!

Also, my grandpa in Nashville, TN (my dad's dad) is not doing so well so that has been weighing heavy on my heart this week. My grandpa has cheated death so many times in his life, from being a prisoner of war in WWII, to getting run over by a farm tractor, and many other near-death experiences but this time he's got pneumonia and a staph infection and has landed himself in the hospital for the past week, on oxygen and scaring us all that he may go into a coma and not wake up. Even when he cracked some ribs a few years ago, he was so tough that it took him days to even mention it, and even then, he just said his side was a little sore. So when I talked to him on Sunday and he said he's not doing very well, I knew that this time, it was something serious. With the infection, he's had to stay in isolation and anyone who enters has to wear gloves and a mask. We were all afraid we were going to lose him so Dad and my sister Jessica and her husband Brandon all packed up Sunday afternoon and made the 10 hour drive to see him. I wanted to go, but with Ethan's surgery only a month away, I know I can't risk getting sick or passing it on to him. But God performed a miracle today and Papa Joe is doing a whole lot better and is getting healed from the pneumonia! He has cheated death once again and won! Praise the Lord for answering all our family's prayers in bringing him through this sickness!

Prayer Requests/Praises
- continued good health for Ethan, as well as Dan and I as we await surgery
- pain relief for Dan's foot
- continued healing of Papa Joe (my grandpa) from his life-threatening pneumonia

Heart Cath completed

We're finished with the heart cath! The procedure went exactly as planned - we got to UNC early Tuesday morning (7:30am), checked in with Registration, went to the Cath Lab around 8:15am, the procedure began around 8:30am and ended at 11:00am. Ethan was under oral anesthesia and woke up pretty soon after the procedure was over. After the cath, Dr. Robinson (Ethan's cardiologist that we see every month) decided to go ahead and do Ethan's monthly echo. The advantage to doing it while we were in post-op is that they were able to give him a little more anesthesia (this time through his IV) to put him back to sleep for the echo. The sonographer said he felt spoiled getting to do the echo on a baby that's sleeping because he could get a good, clear picture without Ethan squirming around!

We are so thankful that the cath went well. Recovery did not go quite as smoothly though. After the cath, the nurses and Dr. Robinson had a hard time finding a good, strong pulse in Ethan's right leg (the one that had the cath) so by about 3:30pm, they decided to admit him just for the night for observation. They put him on a blood thinner to make sure he didn't have or get a clot and we just sat by his side the rest of the afternoon and evening, waiting for a bed. Finally around 8:30pm, a bed opened up on the CICC floor - it just happened to be the same room that we had last time we were here! I (Julie) ended up spending the night with Ethan and Dan came back home to get some sleep and take care of our dog.

Ethan's heart is looking good so we're still on track for surgery at the beginning of January. This is good news to hear that he's still a candidate but it's also kind of make us nervous that it's only a month away! Dr. Robinson said that Ethan hasn't outgrown his shunt yet, and he's gaining weight at a good rate so we're fortunate that this 2nd surgery is "elective" as far as the timing is concerned. This is ideally how it's supposed to be done. The surgeons prefer to have the flexibility to operate on heart babies at the parents' convenience instead of getting to a life-threatening time crunch - praise the Lord! We should hear back from UNC within the next week with the surgery date. And if that's not good for us, we can reschedule. We also have to make sure Ethan's not sick at the time of surgery, so if it get's to be about a week before surgery and we find that Ethan's got a cold or something like that, we still have the flexibility to reschedule!

Wednesday morning, Ethan's nurse found a pulse in his leg and Dr. Robinson confirmed it during morning rounds (about 8:30am) so he said we could be discharged. Well apparently, several patients on the floor were also being discharged because we were told we should be out no later than 11:30am but it took until nearly 2pm to get the discharge papers drawn up so we could leave! We were all exhausted when we got home and we all got a good night sleep (9 hours!) last night.

Weekly weight check

Well it's Wednesday, which means it's the day to weigh Ethan on our home scale and call it into his cardiologist's office. He weighed in at 13 lb. 14 oz. (6.30 kg), so that's a gain of 9 oz (.27 kg) from last week! I'm glad to see he's still gaining weight, despite only eating half as much since last week and having spit up several times yesterday and over the weekend.

Well Ethan just woke up from his nap screaming so I've got to run. Dan's upstairs already asleep and trying to rest his hurt foot so it's all up to me tonight. We probably won't post again until the heart cath next Tuesday, 12/4 so just keep us in your prayers that the procedure goes according to plan.

Thankfulness

Hope everyone had a great thanksgiving! Our's was very nice. As mentioned in the last blog, we had a busy day with lunch being served at Dan's grandma's new house here in Raleigh and dinner being hosted at our house for my family. We certainly have much to be thankful for this year.

On Sunday at church (in my dad's service), we had a chance to stand up and share things for which we are thankful. Only a handful of people stood up, and I was one of them. I wanted to let everyone know just how thankful I was for their constant prayers for Ethan (since Dad mentioned him several times in his sermons over the past couple of months) and to God for his faithfulness in answering the prayer requests to help Ethan do so well through his birth, surgery, and recovery. Of course we could go on and on with things for which to be thankful but having our sweet son still with us is at the tip top of our list this year. We praise God for blessing us with such a special child and such great care at UNC through this whole ordeal. We look forward to seeing what God does next as we prepare for the 2nd surgery! To God be all the glory forever and ever - AMEN!

Prayer Requests
- Ethan's had some lack of interest in eating over the past week - only taking 2 oz. instead of 4 oz. at some of his daytime feedings and he's been spitting up more frequently - 4 times today! Pray that he can still gain weight
- heart cath is one week from today - pray Ethan can stay healthy for the procedure

Next heart cath scheduled

I just received a call from UNC about Ethan's next heart cath. He's on the books for early Tuesday morning, Dec. 4th at 7:30am. It's hard to believe that we're already talking about the 2nd surgery. Praise the Lord that we've made it this far with our sweet son and that he is looking healthy enough to even qualify for the 2nd stage of surgery - the Glenn. Hopefully we'll get a good report from the heart cath so that we will know for sure how his shunt is functioning and to confirm that he still is indeed a candidate for the surgery. Another good piece of news about the 2nd surgery is that the survival rate is even higher than the first - about 90% this time instead of 80%.

Not much else is going on here, just getting ready for Turkey Day on Thursday! With both my family and Dan's family living here in town, we have a long day with 2 turkey dinners. We're excited that Dan's grandma has just moved here from Florida and we'll be having our first meal at her house. Dan's Uncle Andy will also be joining us this year from Atlanta, GA and Dan's other Uncle Dave and Aunt Rorie will come on Friday from PA for a visit. This will be Ethan's 2nd time meeting Uncle Dave & Aunt Rorie and his first time to meet Uncle Andy! Then we'll hurry back to our house to finish getting our Thanksgiving dinner ready for my family.

Prayer Requests
- Ethan's continued good heart function between now and the next surgery
- Ethan to stay healthy up until the surgery
- Good report from the heart cath on Dec. 4
- Strength and energy for me and Dan as we continue to adjust to parenthood
- Peace and patience as we wait for the surgery to draw near
- Wisdom for the UNC cardiology team as they prepare for Ethan's surgery
- Baby Julianne's feeding issues (HLHS baby in New Orleans) and her parents wisdom and strength in adjusting to parenthood with her complications (see link on right)
- Baby Annabelle who will soon be born with HLHS (see link on right)

Praises
- Good heart function so far
- Ethan's steady weight gain and health
- No other major complications since we've been home
- Other HLHS friends - baby Shelby and baby Ethan who have recently had the 2nd surgery and are doing well!

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.

The People have spoken....

"Daddy, why do you let her do these things to me?"Asleep on Mimi.
"I am using the force."
Baby dedication outfit.

Baby Dedication

Today was a big day for us. Three times a year, our church has a baby dedication and today was one of those days! For those of you not familiar with dedications, this is NOT a baptism or a christening - no water involved! This is simply a time to public acknowledge to God in front of our church congregation that we are thankful to have our sweet son and we give him back to God as a demonstration of our faith and dependence on God. In my heart, I (Julie) already gave Ethan back to God back in mid-March, the day after we found out his gender and his heart defect, but it was nice to be able to publicly announce it by being present on stage in the worship service today. God has given us a special blessing by being able to be parents, and especially to a child with a heart problem. There was no doubt in our mind that we could pass up this opportunity to publicly declare that we would raise Ethan in a godly home and commit to trusting him to the Lord's care (as we already have been doing - especially with the first surgery).

We originally wanted to wait until Ethan was a little older for the dedication, but we didn't want to wait too long so we chose to participate now instead of waiting until the next one (February and June are the other dates). We were afraid that if we waited until the next dedication, Ethan may be back in the hospital for his second stage of surgery and June was definitely too long to wait! Plus, in choosing to dedicate today, 2 of our other close friends dedicated their girls as well so that made it extra special because we got a "souvenir" color version of the black & white bulletin insert that shows pictures of all the babies in the dedication - this will be a special addition to Ethan's baby book if I ever get around to doing one...lol :-)

Ethan looked so cute in his little blue and tan plaid collar shirt and ivory corduroy overalls! We will hopefully get a picture upload soon of him all decked out!

Thanks once again for reading this blog and continuing to keep us 3 in your thoughts and prayers. We praise God for how well Ethan's been sleeping this week in his own crib and for the extra sleep that we've been able to get as a result. At least for the past week, I am glad to report that Ethan's slept no less than 5 1/2 hours at a time, with Friday night being the record of 9 1/2! He's been averaging 7 every night. He's still a sleepaholic and goes back to sleep after most feedings, especially early morning feedings, but it's nice to have a good night sleep once again!

Praises - we got our home scale this week, so we'll continue to go to the pediatrician for weekly weigh-ins for a few more weeks just for comparison of their scale vs. ours (I'll weigh him the same day of the week, within the same hour as his pediatrician visit until the cardiology nurse at UNC tells me that she's ok with our weight checks and we can convert to just using it so we don't have to go out so often with Ethan). Also praise for all the yummy meals people have been bringing us so I can continue to rest and focus on taking care of Ethan and adjusting to motherhood.

Prayer Requests - that Ethan continues to sleep through the night; that my mom continues to recover from her sickness of mono; that we will have wisdom and peace about me and Dan's job situations - whether I should return to work in January for the health benefits since Dan's company doesn't offer as affordable benefits as my company (our church) and what to do about private childcare if I do need to return to work; and that I can continue to decrease my stress load since stress has been aggravating my vertigo since Ethan's birth

Sleepy baby

We've been blessed this week, Ethan's been pretty consistent in sleeping 6-8 hours in a row so I think for this week at least, we can officially say he's "sleeping through the night"! Every night last week, he averaged 5-6 hours in a row, Saturday night he slept 8 straight hours, Sunday he slept 6, and last night (Monday) he slept 7 1/2! Also, last night was Ethan's first night to not sleep in our room - he slept in his own crib and didn't fuss or cry at all when we put him in there (which is also a first!). Up until now, he's only had a couple of "naps" in his crib but he didn't even sleep because he just screamed and cried the entire time. I guess he was tired enough after staying awake at Mimi and Pop-Pop's house after dinner that he was ready to just sleep without putting up any kind of fuss! Well enough update, he's over in his bouncy seat screaming his little head off that I'm not giving him any attention - better go get him!

Sunday sermon reflection

We are so blessed to have our sweet little boy and that God has continued to keep him growing strong and healthy. Pastor Chuck talked this morning about prayers - how sometimes they are answered in our timing and the way we want and other times, God chooses not to answer our prayers or at least not the way we think would be best. He specifically addressed the issue of sickness and death. He said that God can and does heal people from sickness, sometimes the healing is on this side of heaven, and other times it's after we are in heaven. He encouraged everyone that is facing a sickness or a terminal illness to pray and continue praying for complete healing and to even call upon the elders to pray over us as we are battling illnesses.

We did call upon the elders of our church to pray over little Ethan back in March, the week we first learned of his diagnosis and then again the first week of August, our last week at church before Ethan's due date. Obviously, God chose not to completely heal Ethan's heart prior to birth and we still don't know what God's reason is for that. Sometimes God works supernaturally to heal, and sometimes he uses medical teams and medicines to do that work of "healing" or management of the illness. We praise God that Ethan's had such a great medical team to treat his condition and that the treatment has gone as well as can be expected and that there were no additional complications to Ethan's diagnosis.

For those of you reading this that are also battling sickness or know of those who are facing sickness or terminal diseases, please continue to pray for those families and individuals. We'd even like to join you in your prayers. You can post them as a comment on our blog, or send us an email (http://www.ethanmiles.com/ and follow the link to email us). We met several families while living at the Ronald McDonald House that we continue to follow their blogs and pray daily for them and we would feel so honored to be able to add your family to our daily prayer list.

In the 7 months since we firt learned about Ethan's heart defect HLHS (Hypoplastic Left Heart Syndrome), we've been truly blessed to know several other families who have children with the same heart defect. Not blessed in the sense that we're happy that they have sick kids also, but blessed in the fact that we're not alone and we can talk with other families who know JUST what we're going through. We can lean on each other for support - to laugh, cry, vent and more. Don't get me wrong, we also need and appreciate the support of all our friends and family that have "healthy" kids and who care about us. Some have even been in similar situations with family illness or other birth defects, but there's a special bond when it's the exact same congenital heart defect (CHD). Living with a CHD is not a road I wish upon anyone but it sure is great to have the support of others who have "been there, done that". Two Bible verses that have really ministered to us through our journey to date are these: John 16:33 (this is Jesus speaking) "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." and another verse (whose reference and exact wording escape me at the moment), which basically talks about how the Lord promises to not give us more than we can handle. Every time I start to get overwhelmed, I claim both of these verses and remind myself that we're not alone in this world - God is with us and will help us get through! What a comforting thought!

Well thanks for "listening" to my (Julie) reflection of the day. It was great getting to see so many of our readers at church today and to hear that you're still praying for us. We greatly appreciate the prayers and moral support - keep it up please! It's hard to believe that in just a matter of a few months, we'll be surrendering our sweet son back to the skillful hands of the medical team at UNC for Ethan's 2nd stage of surgery!

Cardiologist Checkup

All went well at the cardiologist today. Nothing too eventful to report. Dr. Robinson was pleased that Ethan's growing so well and that his oxygen sats are around 73-83%. With those sats, we didn't even need to have an echocardiogram done this time! Ethan has outgrown 2 of his medication doses so we were told to add .1 mL to keep up with his weight. We go back to see Dr. Robinson at WakeMed in Raleigh again on Nov. 15th. At that time, we'll start looking at when to schedule the 2nd stage of surgery (it probably won't be before Christmas!), based on Ethan's oxygen sats and his current weight. We'll know it's getting close to time to do the next surgery once his sats are steadily staying in the mid 60's to low 70's.

As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.

This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!

Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.

2 Month Checkup

Today I (Julie) took Ethan in to the pediatrician for his 2 month well baby checkup and first round of immunizations. We both handled it pretty well! I spoke to my grandma on Sunday and she told me she always felt guilty about having to take my mom and her brothers for their shots and now I understand why and can agree! I personally hate needles and know that they hurt so it was really difficult to subject Ethan to the pain, even though it's necessary in order to keep him healthy. And he definitely needs to be healthy with his condition, especially with cold/flu season upon us (if it will ever cool down!).

In addition to the shots, we also did his weekly weight check. He has gained another 8 ounces, putting this week's weight at 11lb. 13.5 oz. (5.37 kg) and 24 inches long! Tomorrow we go to the cardiologist, so you can pray that goes well too.

Thank you everyone for your continued prayers for us! We enjoy reading your comments (click on the comments link at the end of each posted entry to leave us a comment and also read other peoples' comments to us) and emails (see link on our main page: http://www.ethanmiles.com/) and even seeing many of you face to face on Sunday at church.

Also, tonight Ethan will get be watched by his Grammy (Dan's mom) while Dan and I join Ethan's Aunt Jessica and Uncle Brandon for a fun night out at the N.C. State Fair! For those of you reading this who are not from N.C. - the big claim to fame this year is that it has more rides than Disney World! None of us are big ride fans (especially not at $2-$6/ride but it will still be fun to see!) This is Brandon's first visit to the N.C. State Fair so we'll get to show him the ropes, enjoy some funnel cake, and hopefully catch the pot-bellied pig races!

Mimi and Pop-Pop's House

Not much new to report. We had a nice, relaxing weekend here at home. After church yesterday, we went over to Julie's parents' house for lunch (Mimi & Pop-Pop's house) because the grandparents were going through withdrawals from not seeing Ethan! Then later that night, Dan's mom (Grammy) came over for a visit after having stopped by Ethan's cousins' house (Rebecca and Marissa that were in the last set of pictures, and who live only a mile from us!).

Then this afternoon, I (Julie) took Ethan BACK over to Mimi & Pop-Pop's house so they could babysit while I went shopping for some new fall clothes that are NOT maternity clothes! This was the 3rd time Ethan's been dropped off at their house for a babysitting session (the other 2 times were about 3 weeks ago when I went for a dentist appointment and also for my 6-week postpartum checkup - both appointments were in the Durham/Chapel Hill area about an hour away). It was nice to have a break and also I was pleasantly surprised to find some clothes that actually fit since I haven't lost all that baby weight yet (only 10 pounds to go!). :-)

This week, our other big "outings" are Wednesday - we go to the pediatrician for immunizations and well baby 2 month checkup, and Thursday - we go to see the cardiologist for our monthly visit. We'll give updates after each of these appointments. Please be in prayer for us and Ethan for his immunizations - I (Julie) fear needles and am not looking forward to the 4 shots Ethan will have to receive and what kind of side effects they may cause for him.

Swallow study at UNC

Well good news and bad news. Good news is that in the first 5 minutes of the swallow study (which is the normal amount of time Ethan spends drinking his bottle) Ethan did not aspirate at all! But the bad news is that they continued to watch him swallow for another 15 minutes and towards the end, he did start to silently aspirate. Therefore, the speech therapist (who performed the study) recommends that we continue doing the thickened bottle feeds until after his next surgery, when they will repeat the swallow study again. So I won't lie, I was EXTREMELY disappointed to hear about having to continue the thickened feeds - I walked out of there telling Dan that this news has ruined my entire day, and it was all I could do to fight back the tears. I hardly slept at all last night, I woke up every 1-2 hours and while I was awake, I prayed for Ethan to pass the swallow study with flying colors so we can start to have a little normalcy to our lives for once. Even though God chose not to answer my prayer the way I requested, I know we still made the right decision to do the swallow study this morning. As hard as it is to get the news that we are recommended to continue the thickened feeds, I know the speech therapist is just wanting to err on the side of caution. As I've said my entire life, "better safe than sorry". I just wish I didn't have to take my own advice and the advice of UNC.

More Pictures!

Here are some more pictures of Ethan, as promised earlier today!

Ethan in his swing!

Aunt Jenny feeding Ethan!

Napping with Mimi!

Ethan with his cousins, Marissa (2) and Rebecca (5)!

Ethan being fed by Aunt Jessica while Uncle Brandon watches!

Ethan asleep on Mommy after his bath!

2 months old!

Hard to believe our little boy is 2 months old today! So much has happened in his life since he was born! Yesterday, we went to the pediatrician for his weekly weight check - he's now 11lb. 4 1/4oz. (5.13kg). That's only 5 oz. gained this week, as opposed to 9 oz. gained last week, but Nurse Kay at UNC said it's ok. His pulse ox this week has been between 73-81%, so it's slightly improved from last week. We also ordered a digital scale from ebay, that should be arriving in the next week or two, so hopefully we won't have to go weekly to the pediatrician for his weigh in any more. Also, with the home scale, we won't have to have a home nurse come weigh him - which was our other option, but our current home nurse doesn't have a digital scale (which UNC requires for the weekly weigh in) and no other home nurse company has a digital scale either, so home nursing is out of the question at this time (plus it was going to cost $102.95/visit).

Tomorrow morning at 8:30am we go back to UNC for another swallow study. Last swallow study was done about 6 weeks ago, and at that time, it was taking him 20 minutes to drink a 2 oz. bottle, and it was only the last couple of minutes where he started falling asleep when he was silently aspirating (swallowing the wrong way and not coughing). Well it only takes him 5 minutes to take a 3 oz. bottle now and he doesn't get tired or fall asleep so we think he's ok. He has the ability to cough, and it's rarely when he's eating so we think he's ok. If he passes, then we can take him off the thickened feeds and hopefully I'll be able to nurse him more often! Right now, I'm only allowed to nurse him once a day, and when he does nurse, he latches on right away and does great, although he falls asleep after about 10 minutes.

So today's prayer request is that the x-ray swallow study goes well tomorrow morning. Also, next week, we've got 2 appointments - next Wednesday after his weigh in, he'll have his 2 month checkup and also get his immunizations. Then next Thursday, we go back to WakeMed to see his cardiologist for his monthly heart checkup.

And, as promised, I finally have some new pictures of Ethan for your viewing pleasure! P.S. we'd love to hear from you. Please click on the comment link at the bottom of each blog entry to post a comment on our site!

Mommy & baby Ethan

Well I thought I could get more than one picture posted but I guess not. I'll try to post more later today.

Weekly weight check

Well we went in to the pediatrician this morning for our weekly weight check. If we go between 8am-8:30am, only the staff is there, no patients so we can get right in and out without being around any sick kids. Ethan slept well last night, he usually wakes up every 3 hours and wants to eat but he went to bed at 11pm last night (after his last feeding then didn't wake up until 4:30am). He must've known it was weight check day because he woke up again at 6am and fussed until I got out of bed and fed him at 6:30am). After his 6:30am feeding, he went back to sleep until we got to the peds at 8:15 and I had to undress him to have him weighed. He's a whopping 10 lb., 15 1/4 oz!

He fussed a little because he was cold and naked, but then fell back asleep and has stayed asleep through his next feeding. It's now 11:15 am and I'm going to have to wake him so he can eat, take his meds, then go with me to meet my friend (and co-worker) Angie for lunch. Oh he must know I'm typing about him b/c he's starting to wake up and fuss - time to go feed him!

God is so Good!

In addition to having a great day yesterday, getting to be back at church, I also forgot to mention that Ethan finally decided to give nursing a try yesterday! This was such an encouragment to me to not have to pump for once! Since Ethan's cardiology team said he could only nurse once a day and have to be bottle fed the rest of the time, I was doubting if I'd ever get to have the bonding experience. I've tried several times since we came home, but he just screamed and cried (he's so spoiled by the bottle!) and never wanted to latch on until yesterday. He's been fussy all day today so the couple of times I tried, I wasn't surprised that he didn't want to do it. I don't want to force it on him and make him end up not enjoying it, so I'll just keep trying, day by day. Maybe if God blesses us with more children in the future, I'll get the blessing of getting to nurse and not pump. Until then, I'll just be thankful for the times I do get to nurse Ethan, each time is precious and amazing.

Another way God has been good is that I've been able to connect with two other HLHS families - both are Christian families with baby girls. One girl was just born Sept. 19th and had her first surgery (Norwood) last Monday, Sept. 24th. Her family's from New Orleans and they chose to have the surgery in Boston. Please add baby Julianne and her parents (Jessica and Kent) to your prayers. http://juliannesjourney.blogspot.com/ The other family is a little closer to home, they live in Columbia, SC - where my (Julie) youngest sister is going to college. Their baby has not been born yet, but, like us, they were blessed to find out prenatally about their little girl's condition so they can understand and prepare for their journey ahead. Please pray for this family as well: http://babygirlbutcher.blogspot.com/.

First Church Service

Well today we braved taking Ethan out in public by going to church today! Doctors orders are to only take him out in public when absolutely necessary (to avoid overexposure to germs) and it was absolutely necessary for us spiritually, mentally, and physically to be back at our own church. It was great to get to hear a biblically sound sermon (unlike the one we heard our last week we were in Chapel Hill) and enjoy some contemporary worship and have some great fellowship time with our friends and even meet some new faces of people who said they've been praying for us. For those of you reading this blog that don't know us, my (Julie) dad is one of the pastors at our church of nearly 2,000 members and he does an excellent job at preaching! He has managed to even slip Ethan into his sermon illustrations a few times so many people have been able to find out about our main website: http://www.ethanmiles.com/ and be able to stay updated through this blog to know how to keep praying for our sweet son.

Please continue to pray that Ethan continues to do well, and wisdom for us about his preventative care. Right now we're trying to sort out what to do about his weekly weight checks that his cardiologist and surgeon are requiring. For these first few weeks that we've been home, we've had a home nurse that has come to weigh him and check his blood pressure and pulse ox, but our insurance year starts over tomorrow (Oct. 1st) and that means we have to start all over with our deductible (we had obviously already met our deductible and maximum out of pocket expenses just with the surgery so the nurse was paid 100% by our insurance!).

The home nurse is great because we don't have to go to the pediatrician each week, and risk being exposed to any of the sick kids. The pediatrician doesn't charge us (or our insurance) anything for just doing a weekly weight check, but the home nurse will charge our insurance for each visit - which will end up costing us more until our deductible is met (the new plan that starts Oct. 1 is a high deductible plan). So you see, we need guidance and wisdom to decide if the extra cost for a home nurse is worth it so Ethan won't be exposed to sick kids at the doctor's office, even though we have been approved to go first thing in the morning, during the first 30 minutes the office is open, before any patients are scheduled.

First Bath

Aunt Jessica and Uncle Brandon brought us dinner Friday night and ate with us! It was nice to have the adult interaction and not have to cook either! Thank you, Thank you, Thank you! After dinner, Brandon got to feed Ethan a bottle for the first time. Then he and Dan went upstairs to shoot some pool while Jessica and I hung out with Ethan. After they left, we started on Ethan's bedtime bath.

Up until now, Ethan's only been having sponge baths because his umbilical cord refused to fall off until Wednesday of this week. He hasn't been enjoying the sponge baths too much, so we weren't exactly sure how he'd handle a real bath. We were glad to find out that he loves it! He was a little fussy when we were undressing him (as he always is - guess he gets his modesty from his mommy!) but as soon as he felt the warm water, he quited right down! Mommy did the bathing and daddy was the photographer - pictures are sure to come!

Sleepy baby

We are proud to announce that we all got a good night sleep last night, Ethan slept through the night - a full 8 hours! He slept from 9pm-5am! Mom woke up once to pump and checked on him to make sure everything was alright and he was sound asleep, slightly snoring even! When he woke up at 5am, he was VERY hungry and took 2 bottles in a row - both 3oz! Then he slept again until Dad's alarm went off at 7am, but went right back to sleep for another hour and a half so mom could have a chance to pump and take a shower. He ate again at 9:30 and stayed awake until 2pm but then slept the rest of the day. We had to force him to wake up every 3 hours to keep him on track with his eating schedule. It's now 11pm and we're ready to go to sleep but we had to wake him up again to take his nightly meds and have another feeding before we all go to bed. I tried to keep him awake during the day but he's just been so sleepy, it's been really hard to keep him awake. Hopefully he'll be able to go back to sleep after taking his meds, and not be wide awake and ready to stay up. He just yawned real big so maybe he'll still sleep some tonight.

We had a nice surprise from my sister (Aunt Jenny) today. She's been off at college in Columbia, SC since Ethan was 4 days old and she showed up unannounced at our house this afternoon! She got to stay for a couple of hours, and she got to witness me waking Ethan up for his 3pm bottle, which she got to feed him, but then he fell right back asleep! Then we met my other sister (Jessica) and her husband (Brandon), along with my parents for dinner in Wake Forest. Jessica and Brandon will be coming over to our house tomorrow night to bring us dinner, so it'll be nice to get to see them 2 days in a row. Well it's off to bed time now!

One Month Checkup & Lactation Consultant

Yesterday was a long day so forgive me for no post. The pediatrician appointment went pretty well. We saw a different doctor, who was a lot more thorough and I felt more comfortable with. Ethan seems to be doing well over all, and no immunizations were given! He'll get those at his 2 month checkup, along with the start of Synagis - a monthly shot during fall and winter, to prevent catching RSV (for more information, visit synagis.com). His pulse ox was good - 82% and he weighed in at a whopping 10lb. 3 1/4oz. - a whole 2 pounds heavier than his birth weight!
Also, 2 days ago I mentioned that Ethan was awake almost the entire day and I had hoped he'd sleep well that night and he did - 5.5 hours! But last night was a different story, he was asleep most of the day and then woke up every 2 hours. He's slept about half the day today, so we'll see how tonight goes! :-)

Today was another big day, first we went by my office for a visit with my co-workers and a meeting about the change in insurance that takes effect in October. Then we went to a different branch of Ethan's pediatrician's office to meet with a lactation consultant. To recap, with Ethan's heart problem he burns calories faster so all his feeds have had to be fortified with extra calories - by adding a couple teaspoons of formula to any bottle we give him. As a result, I haven't been allowed to breastfeed, so I've had to exclusively pump. Well as any mom reading this knows, pumping's not the most fun thing in the world, and it takes extra time to pump, then take the time to bottle feed. It's hard to get anything else done during the day! Therefore, I'm getting very frustrated and decided it was time to seek help! My main frustration has been that each pumping session only produces half the amount of milk that Ethan takes at each feeding so I feel like I'm not able to provide, therefore stressing myself out and that's not helping my supply at all!

As a first time mom, this feeding issue has been extremely difficult for me emotionally and physically. I want the special bonding time of nursing that most women get, and the cardiologist has said I can try breastfeeding once a day max, but that he needs the extra calories the rest of the time. Also, with bottle feeding, we know exactly how many ounces he's eating. Plus, because he failed the swallow study a month ago, all his feeds have to be thickened so he doesn't aspirate (let the food go down his windpipe instead of down his throat into his stomach). So at our visit today, Michelle tried to teach Ethan to latch on, but he's spoiled - a bottle is much faster to feed from than me! She has given me tips to try to get Ethan to latch on, which I will try daily, and she's also going to have me come back weekly for a couple of weeks to work on it in the office.

Besides trying to nurse once a day, she's suggested I try the herbal supplement, Fenugreek, to try to help increase my supply. I'm very pleased and encouraged by Michelle's patience and understanding and positive attitude about being able to get him to nurse when he's this old, and also about being able to still increase my milk supply. In adition to the Fenugreek, she told me to relax, get lots of rest and sleep, drink lots of fluids and eat well, continue pumping/nursing and also stop cooking, cleaning, doing dishes and laundry! I'm not going to argue with that!

So anyone wanting to help us out, we've appreciated your financial gifts we've received towards Ethan's medical fund, but what we could really use at this time is some help with meals! Tonight we're having our very first meal brought to us - thanks to Dan's mom!

Week 2 Alone

Today was a good day for the start of my 2nd week home alone with Ethan. Nothing eventful happened and we just enjoyed lots of mommy-son time. Ethan was awake nearly the entire day, so hopefully he will sleep really well tonight! Tomorrow we go back to the pediatrician for Ethan's one month checkup (I think he's getting his immunizations so he won't be very happy and neither will I). Ethan's CICC nurse clinician, Kay, at UNC called his pediatrician last week to confirm that we can go for weekly weight checks without having to pay a copay each time, which is a big relief. I called his pediatrician to confirm and they said that if I go early in the morning, that I can get right in before any of the appointments show up (they open at 8 but don't start seeing patients until 8:30), so that's less exposure to germs!

Be praying for our pediatrician appointment - 9:40am on Tuesday morning. I dread having to see him get his shots but I know he really needs them. We can't risk getting any major sickness prior to his next surgery. He will also have to start going monthly (every 28 days to be exact) to get his RSV shot - which he'll get Oct.-April. This is not a true vaccine in that instead of getting injected with a tiny bit of the virus, instead, he gets injected with the antibodies that his body would make to help fight it. What a great idea for an immune booster!

Tonight Ethan's cousins, Rebecca (5yr. old) and Marissa (2yr. old) Gunter (Dan's sister's kids), came to visit. They live exactly 1 mile down the road from us, so it's nice to have them close by! They are so excited to finally have a cousin close by, and I think it'll be great for them to grow up with family so close. Amanda and her husband, Reggie, have been so gracious to hand down all their girls' old baby gear (swing, carseat & stroller, bassinet, toys, high chair, etc.). The carseat and bassinet have been used the most, but we're starting to introduce him to the swing and he seems to like it, as long as it's not right after he's had a bottle! One of these days we may even take him for a walk in the stroller, if it will ever cool down!

Thanks for continuing to read our blog, and sorry for taking so long to post an update. Just remember that "no news is good news". We've just been so busy adjusting to life with a baby that we haven't had much time to do anything else!

Day 2 Alone

Well it's Tuesday afternoon and I'm happy to report that today was uneventful! Ethan, Gray-c and I were all pretty tired this morning and took naps between Ethan's feedings until 11am! It was nice to get caught up on some sleep today. Gray-c is very jealous and clingy and has to always be touching me or sitting on my lap. Not only is this week a big adjustment for me, but for her also. At least when my parents were here, there were extra hands to help out, plus their cat, Emma, was around to keep her company. But now Gray-c's having to learn to be patient and wait her turn for my attention. I can't play ball with her 24/7 like we used to before we had Ethan here (which is fine by us b/c we tire out after about 5 minutes and now we have a good reason to not play with her all the time!). Well that's all the news for now, praise God that Ethan continues to do so well!

First Week Alone

Well Mom and Dad are gone and Dan is at work as usual so this is the first real week alone with Ethan. Time to get settled into a realistic daily schedule. Yesterday was so crazy there was no time for an update.

I began the day with Ethan's home nurses showing up 2 hours early (9:15 instead of 11:15 so I was still in my pajamas) and he was already fussy because it was time to eat when they showed up. Fortunately they are only here for about 30 minutes! All his vitals looked good and his oxygen sats were at 82 today (they're usually around 74-75)! He still weighs 9lb. 4oz., same as he did on Friday. After the nurse visit and Ethan was fed, then Gray-c (our dog) threw up on the living room carpet. So I cleaned that up and tried to get online but had connection problems.

At 11am, Dan called and invited me to have lunch with him, and I gladly accepted it as a nice break from the dog. So I packed a bottle for Ethan, and got ready to go and decided to change Ethan's diaper before we left. As if cleaning up after the dog wasn't bad enough, Ethan decided to pee on me and all over his clothes and the couch where I was changing him (including the thick cloth diaper we use for burp cloths). Once that was over and we got all cleaned up and changed clothes, then I noticed another wet spot on the same couch and realized it's where Gray-c threw up again! So I did my best to quickly clean that up so I could get to lunch (Dan wanted me to leave at 11 when he had called me so we could beat some of the lunch hour rush at K&W but now a whole hour had passed. By now, it was time for Ethan's next feeding so I made yet another bottle so I could feed him and still have a spare while we're out.

Lunch was nice - Ethan slept for the whole car ride and lunch. After lunch, we showed Ethan off to all Dan's coworkers. On my way home, I spontaneously stopped by my office to show him off as well. We were there for a couple of hours so I'm glad I packed that extra bottle. Ethan woke up about an hour after I'd been there and was hungry so a couple of the ladies in my office asked to feed him and our receptionist, Carolyn, was the lucky one!

Then we came back home, fixed dinner and had a pretty uneventful rest of the evening. Hopefully the rest of the week won't be so crazy!

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.

One month old!

Well today, 9/11/07, Ethan is officially one month old! He has had lots of "firsts" today. To start, Ethan's home nurse, Linda, came to visit. She will come back weekly for weight and pulse ox checks and we can call on her any time we have any questions in between. If Ethan had come home with the NG tube, she would also be available to assist with changing the tube and addressing any problems/questions we had about the feeding tube, but fortunately we don't have to deal with that!

Also, Ethan had his first bath today in his new little bathtub we received from one of the baby showers. Mom and I thought this would be a pleasant experience for him but he screamed and cried the whole time - I guess because he was naked and cold (two things he really doesn't like). Until his umbilical cord falls off, he can't be sitting in water so it was more of just a sponge bath (which he's had before and didn't fuss nearly as much).

Tomorrow, we'll be heading back over to UNC - but only for a visit with our friends Crystal and Ben and their HLHS baby girl, Shelby Glover. If you've been reading our blog regularly, you will remember that we met Shelby and Crystal a few weeks ago when Shelby came for her pre-surgery heart cath and they stayed at the RMH the night before the procedure. Crystal just got news today that Shelby's getting ready to have her 2nd heart surgery on Thursday and they hvae to be at UNC tomorrow for a pre-op appointment. We're going to visit them tomorrow night to support Crystal and Ben and to let Ethan and Shelby meet for the first time! Please be in prayer for their family. At 5 months old, Shelby is a very sweet, healthy looking little girl. We can only imagine how hard it is for them right now to see their daughter undergo the Glenn surgery and to wait for her to get through the surgery and go to recovery so they can see her again. Going through the first surgery (the Norwood) was hard enough on both our families, but the babies were so young that we didn't really have much of a relationship yet. Shelby is a real little person now, with a personality and character all her own. Before we know it, we'll be following in their footsteps as long as Ethan continues to do well.

First Pediatrician Appointment

We've now had 2 1/2 days at home with Ethan and he's been doing well. We use the pulse ox machine to measure his oxygen sats over night, and also a couple spot checks during the day. As long as the signal doesn't have any interference (i.e. Ethan's not moving around or his foot isn't cold while the sensor's on it), Ethan's been doing fine, with sats in the 70s.

Besides understanding what it means to be a sleep-deprived parent from nightly feedings, we have the added sleeplessness of dealing with his pulse ox machine that beeps every 4-6 minutes for no reason at all, and also alarms every time his sats drop below the safe range that we've programmed. Hopefully, in a few weeks he'll be breathing better as his lungs get stronger and we'll be able to stop the all night monitoring and just do the daily spot check.

We also had our first pediatrician appointment today. Ethan currently weighs 8 lb. 12.5 oz. The UNC doctors requested that he get weighed weekly, so we'll have a professional nursing company come and do that (their first visit is tomorrow), but his pediatrician also wants to get him back in the office in a week to be weighed as well. Next month at his well baby checkup, he'll get all his immunizations so we won't be taking him out in public very much until then, and probably not much after that either because we'll soon be approaching cold/flu season as the weather eventually gets cooler. We can't afford to have him get very sick prior to his next heart surgery.

Praise God for a great start to being home, it's so great to be back!

We're Home!

Thanks everyone for all your prayers and words of encouragement over the past 4 weeks that we've been at UNC (and even during labor and delivery). Dr. Stewart told us to plan on staying in the hospital 4-6 weeks after delivery and we're so thankful that it was only 4 weeks! God has been so gracious by answering prayer after prayer that has been lifted up during this time - including my prayers last night that he'd continue to do well off the oxygen and that we'd get to go home today or tomorrow.

Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!

At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!

For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.

Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.

We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).

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.

Still at UNC...

Well it's Tuesday morning and Ethan had to have his Lasix med (a diuretic) upped to twice a day instead of once a day. This is because his doctors think there might be a little fluid around the lungs, which is causing his oxygen saturation to be lower than when he was in the PICU last week. We'll see how he does with the extra dose of Lasix, and if that's what does the trick, then maybe we'll get out of here by the end of the week.

Dan learned how to change the NG tube this morning, and he also changed his first poopy diaper over the weekend, so we're slowly going down the checklist of things we need to do in order to get out of here! Also, Ethan's in the process of having his newborn hearing test that all babies have to have before being discharged from the hospital. The hearing test is now done and the tech said he passed the hearing test for both ears!

Thanks for your prayers for his feeding. He's been very consistent with his feeds, mostly being able to take the entire 65cc bottle at each feeding. He only had one feeding over night where he was too sleepy to take the whole bottle and had to have about 20 cc's given by NG tube. Hopefully, by the time we go home he won't need the NG tube either.

Prayer Request for the Day:
Please continue to pray that Ethan can get weaned off his oxygen (he's only at .2mL/hr which is barely anything at all, but he's been at that same place for the past 24 hours now), that's the one thing holding us back from going home right now. The nurse just said that he's sound asleep and his oxygen sats just dipped even more so she's turning him up to .3ml/hr. This is not the right direction for getting out of here, but at least he's in good hands here. We'd rather be here a little longer and get his sats right, then to go home and have him turn blue from lack of oxygen and have to rush back over here.

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.

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!