Big Update

Hey Everyone! So as the saying goes, no news is good news! I can't believe it's been six months since our last post. That is about to change because we have a lot coming up! We've had a lot happen in the last six months so, if you're up for it, hang in while I try to catch you up to speed.

I'll start back in March, shortly after where the last post left off. Early in March, we found out that we're having another baby - due November 2nd. We told Ethan a couple weeks later and he was pretty excited and immediately starting sharing the news with everyone that he's going to have a little brother. :) At 8 weeks pregnant, we had to stop him from telling everyone yet

because it was still way too early to know for sure about the gender of the baby. Also in March, we finally got around to getting Ethan's 3 year portraits done at Wal-Mart. And the biggest news of the month, Ethan got to be a ring bearer in his Aunt Jenny's wedding!

Ethan and his cousin Annie (as the flower girl) at the rehearsal.

Ethan's 3.5 year portraits in his ring bearer suit

Another shot from the portraits

Then in April, Ethan went for a cardiology checkup and things still looked good with his heart on the echo (ultrasound of his heart). As a result, his cardiologist felt confident to go ahead with a heart cath to prepare for the final heart surgery later this year, at a date of our choosing.

May was a pretty low key month, Julie celebrated her 31st birthday by Dan whisking her away to South Carolina for a weekend away to go to the Kenny Chesney concert & visit from friends while Ethan spent the weekend with Dan's parents.

June was a super busy month for us all. On June 2nd, Ethan had his heart cath at UNC Hospital's pediatric cath lab. Again, things looked very good with Ethan's heart. In fact, Dr. R, his cardiologist, even went so far as to say that Ethan has one of the best looking anatomies for someone with HLHS! This was very encouraging news for us to hear and, upon review of his cath results with the peds cardio-thoracic surgeon, we should be on our way to booking the final heart surgery, the Fontan!

Also in June, we had a level 2 ultrasound of baby #2, to evaluate the anatomy, specifically the heart, and also find out the gender of this baby. We are happy to report that this baby is completely heart healthy and Ethan was correct in guessing that this one is, indeed, a brother to Ethan!

We also had a family beach trip with Julie's family (mom, dad, sister, brother-in-law, & cousin Annie) in June. This was a much needed time of relaxation and fun for us all to break up our busy summer! We stayed so busy that we forgot to get many pictures of the trip. Ethan and Annie enjoyed lots of play time in the sand and waves, as well as some time in the pool. Ethan loved the water last summer but has gotten a little more timid of pools for some reason this year. We probably should have put him in swim lessons again but time got away from us! We also took Ethan to see Cars 2 on the day it was released in the theaters (June 24th). If you know Ethan at all, you know that he's a bit obsessed with all things "Cars/Cars 2" related so this was a big treat for him!

June was also the month we heard back from UNC and booked Ethan's Fontan heart surgery! He is scheduled for surgery on Thursday, September 1st, with a pre-op appointment the day before, Wednesday, August 31st.

July has flown by for us. It's always a busy month with Aunt Jessica's birthday on the 1st, Mimi's (Julie's mom) birthday on the 13th, Mimi & Pop-Pop's anniversary on the 23rd, new bro-in-law Brandon's birthday on the 26th, & me and Dan's anniversary on the 27th (9 years for us!).

Well if you've made it this far, then you're pretty much caught up with our lives. August is here and we're busy trying to make the most memories and have as much fun as we can before surgery on September 1st!

August is Ethan's birthday month, and also anniversary of his first heart surgery! We're stretching out the birthday celebration all week long. We started with a small party/cookout with our small group at church on Sunday night, August 7th. We had a Finn McMissile & Mater cake to celebrate. Then, every day this week I'm trying to do a little something special for him.

Monday, August 8th, Dan and I went to UNC to meet with his surgeon to get more info about what to expect with this surgery and recovery. So while we were in the meeting, Ethan's Mimi took him and cousin Annie to the sprayground/pool for a couple hours. They had a blast playing together!

Tuesday, August 9th, we went and had lunch with Dan then went to Rita's Italian Ice for dessert.

Wednesday, August 10th, Ethan and I met up with some friends to watch Cars 2 (for the 3rd time this summer) and then we ate ice cream at Baskin Robbins!

Thursday, August 11th (today!) - Ethan's 4th birthday! We're going to meet Mimi at Sears for Ethan's 4 year old portraits, then get lunch at the food court (probably Ethan's favorite - a cheeseburger (no pickle) from McDonald's. Then for dinner, we'll take Ethan out for pizza and doughnuts and let him open one present.

Tomorrow, Friday, August 12th, I've got to go into work for a couple hours so the plan is to let him have a playdate with cousin Annie. This may have to be postponed though because Ethan's starting to get a runny nose :(

Saturday, August 13th, this is the 4 year anniversary of his first heart surgery. Don't have anything planned yet for that day so I've got to think of something. I guess it'll mostly depend on how Ethan's feeling with his cold.

Sunday, August 14th, we plan to have a family cookout/birthday party! I'll stop here and update more after the party. I'll hopefully have some more pictures to include too!

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.

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!

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.