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.