Cardiologist Follow Up Appointment

Well, today makes 4 weeks from the day Ethan had his Extra-cardiac Fontan surgery. Before we were discharged from UNC Children's Hospital, the cardiology team scheduled us a follow up appointment at the Raleigh Clinic (Wake Med's Heart Center). This is where we normally go for all our cardiology appointments (a 15 minute drive is much better than a 1 hour drive!).

Today at the checkup, we did all the usual stuff - took Ethan's vitals (good blood pressure, 96% pulse ox), weighed him (17.0 kg/37.5lbs), measured his height (41.5in/105.41cm), Dr. R listened to Ethan's heart with the stethoscope, had an echo (ultrasound of the heart), and also added an EKG. Everything looked great according to their standards! Dr. R decided to start weaning the main diuretic (Furosemide/Lasix) to once a day instead of twice a day, still 2.5mL dosage. We're able to completely drop the other diuretic (Spironolactone/Aldactone)! In one week, we'll be able to stop the Lasix all together so Ethan will then be back to no meds!!!! This is fabulous news - especially considering the fact that pre-surgery, we were told by the surgeon to expect to be on baby aspirin indefinitely. Also, in the PICU, Dr. R said we'd probably start Enalapril (an ACE inhibitor to treat high blood pressure) indefinitely but apparently that's not needed any more either!!!!

We also got great news to find out that we don't go back for a cardiology checkup for an entire year! What a relief to know that Dr. R thinks he's in good enough shape to go that long between visits! We're used to seeing him every 3-6 months. 

Praise the Lord for taking care of our sweet boy and helping his recovery go so smoothly! Now it's time to get back to our new normal life, just in time to await the arrival of Ethan's little brother, due in only 5 weeks. Poor baby brother still has no name but we're working on it :)

In the meantime, Ethan's enjoying running around without getting out of breath and tiring out easily. This poor momma is the one trying to keep up with him these days! Our next family goal between now and Nov. 2 is to work on getting Ethan potty-trained. He did a great job on Tuesday, wearing underwear all day long and taking himself to the potty each time he needs to go. He was a little late and had an accident each time but at least he realized what was happening and could stop himself and finish in the bathroom! Baby steps! Maybe this Lasix is paying off after all!

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!

Discharge Day!

Ethan had a good night, got lots of sleep, despite having to be back on oxygen all night (started at .5L and went down to .3L around 4am). He woke up full of energy and ready to play at 6am, which is early for him. I, on the other hand, tossed and turned all night and never really got any real sleep. We played and watched Disney channel and ate breakfast together then he went down for a nap at 8:30 (usually the time he'd just be getting up) and I'm just going to let him sleep as long as he can since his schedule's so off right now.

Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!

Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.

Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.

We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!

Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!

January recap

What a busy month this has been! Not to bore you with too many details (as I am often known for!), I'll make this post fairly quick. The big highlights for this month included a baby shower for Aunt Jessica (due in March), nearly 4 inches of SNOW on Jan. 20th, shopping at the Kids Exchange (huge bi-annual consignment sale), a cardiology checkup, and one of Ethan's church buddies 1st birthday party (tomorrow).

The baby shower for my sister, Jessica, was a lot of fun. It was a lot of work to plan, but totally worth every minute of it! My mom (Mimi) hosted the big event and my other sister, Jenny, helped with food and decorations. Thanks Ethan for bearing with me on all the shopping trips to Target, the dollar store, and beyond as I gathered all my supplies for it. Thank you also, Dan, for watching Ethan so I could have all afternoon at Mom's house to decorate, set up, throw the shower then clean up without having Li'l E clinging to me!

Snow day was also a lot of fun - Ethan's first real measurable snow! He didn't like me bundling him up at first, but then when we got outside, he didn't mind at all! We babysat Ethan's cousins half the day so their parents could work and we had a blast playing in the snow, having snowball fights, making snow angels and playing with our new neighbors. I know we've been bad about not posting many new pictures lately, we'll hopefully get some snow pictures up soon (we did manage to get them up on Dan's facebook account at least).

The Kids Exchange is always a highlight of the new year for me. I have yet to actually sell anything because I don't know if we'll need it in the future if we ever have any more kids. I just enjoy going for all the great bargains on anything and everything for kids. This year, I managed to snag a few Elmo and Veggie Tale DVD's, an old U2 CD for Dan, and lots of spring/summer clothes for Ethan. We went on a weekday while Dan was at work and Ethan did amazingly well during our hour and a half of shopping and another hour standing in line to check out!

Ethan's cardiology checkup yesterday went pretty well. At 17 months old, he doesn't like to stay still very long and he's becoming increasingly aware of his surroundings and started crying/trembling the second I put him on the exam table to undress him to get weighed (even without the nurse or doctor in the room). He weighed in at 24 lb. 14 oz. and his blood pressure seemed fine according to the nurse. The echo went about as rough as last time (Sept.) - Ethan just cried and kept pushing the tech's hand away. I had been dreading this part because I know they need to get some good pictures of his heart so I came prepared as best as I could with everything from toys to snacks to chocolate - nothing seemed to work. The tech did manage to get a few good pictures but not as many as our doc wanted so a sedated echo at UNC has been ordered for sometime in the next month or two (the good news is that they aren't rushed or didn't see anything of concern on what few pictures they did get). So we're now just in a waiting game - we're told it could take up to two weeks just to get the call about the appointment.

And last but not least, since Ethan's friend's birthday party isn't until tomorrow, nothing to really report about that yet. I'll just say that it's a girl's party since he doesn't have any boy playmates at this time!

Thanks for checking in on us. We'll try to get some more pictures up soon (they just take so long to load that I can only do a few at a time so be patient!).

Cardiologist Appointment

Yesterday was our quarterly cardiologist checkup. Despite the drought we've been in for over a year now, it never fails to rain the day we go to see Ethan's cardiologist and yesterday was no exception! Fortunately Ethan didn't seem to mind the cold drizzly rain as we walked from the car, through the parking lot, and into WakeMed's Heart Center. Ethan usually doesn't mind going for his cardiology checkups and behaves very well but yesterday he was just as fussy as he could be! Dr. Robinson said that all his patients were fussy yesterday and we thought it might've been the weather.

Ethan's fussiness began the second I put him on the exam table and undressed him and had to make him lay down so the nurse could measure his length. He calmed down for a few minutes while we went to the next room over to get weighed but then started fussing again when I had to hold him while the nurse measured his pulse ox. He was so wiggly that we weren't getting a very good reading at first - hovering around 76% but then I started singing his favorite song, "If You're Happy And You Know It" and he calmed down and we were able to get his normal pulse ox reading of 82%. Next, Dr. Robinson tried to listen to his heart and lungs with his stethoscope but Ethan was crying again so much that it was hard to get a good listen. From what he did hear, Dr. R did say everything sounded good and he wanted to get an echo done if Ethan would cooperate.

The echo technician was very sweet and patient with us. Usually this is Ethan's favorite part of the visit and he stays very still but he's at the age now where he doesn't like to stay on his back very long - he'd rather be sitting up playing or crawling around. The tech even brought in a TV/VCR for Ethan to watch an Elmo movie but that didn't last very long and he was squirmy and fussing again. We must've have a pretty skilled tech to do Ethan's echo because even with him not cooperating, she was still able to get a few clear pictures of his heart. The RV (Right Ventricle) function looks great with no leakage. Unfortunately they didn't really get a good look at anything else like the aortic valve or the pulmonary arteries (the ones that were worked on during the 2nd surgery) but Dr. R was confident enough with what he did see that he doesn't need to see us back for another 4 months - the end of January!

Thanks as always for checking in on us and continuing to keep us in your thoughts and prayers. We are so thankful for all the support but more importantly for the good health that God has blessed Ethan with over the last year. Please continue to also keep baby Gracie in your prayers as her parents patiently wait for her 2nd surgery next Thursday and also baby Lindsay is having her heart cath today in preparation for her 2nd surgery probably next week as well.

Cardiologist Appointment

Yesterday we went back to the cardiologist for a checkup. It had been 3 1/2 months so we were curious as to how Dr. Robinson thought Ethan's heart is doing. Ethan weighed in at 9.6 kg (21.1 lbs.) and measured 29 5/8 in. His blood pressure and oxygen saturation (o2) levels looked good - his o2 sat was at 82%, which is about where it should be and the same as it was when it was checked back in March at the last appointment. Dr. R also listened to Ethan's heart with his stethoscope and all seemed well but they still ordered an echocardiogram (echo) just to be sure.

Ethan was a very good boy for the echo technician - I told Dan that the only time I've even seen Ethan be so still is when he's asleep! The tech laughed and said it worked out good for him! Thanks to Ethan's cooperation, the tech was able to get some really good pictures of Ethan's heart and after Dr. R reviewed the pictures, we were told that Ethan's the best looking HLHS baby he's seen in a while! The RV (right ventricular) function looks really good and the atrial arch that was repaired during Ethan's 2nd surgery back in January is still wide open so we are very pleased! We don't go back again for another cardiologist visit until September and if all continues to look good, we will start going in 6 month increments!

Thank you Jesus for keeping our son so healthy and having good heart function and for using the wonderful staff at UNC Hospital to medically "fix" Ethan's heart as well.

Well thanks for checking in with us. I'm off to put Ethan down for his morning nap then it's off to Mimi's house (my mom) to go swimming!

more updates

Several updates to report since our last post. First, Julianne is out of the hospital from her 2nd heart surgery and doing great! She got released yesterday and will stay in town near the hospital for the next several days with her parents, just to make sure everything continues to go well for her. If there are no complications, they will be headed home early next week!

Second, Ethan's still doing well with his heart function! We went to the cardiologist this morning and Dr. Robinson said that if Ethan didn't have the scar on his chest to remind us of the surgeries, you wouldn't know anything is wrong with his heart by listening to it! That news made me very excited! Dr. Robinson also told us to stop giving Ethan Lasix because his lungs sound clear, so that means we're medicine-free for the first time!

Third, today is Shelby Glover's first birthday! Shelby is another HLHS baby that was treated at UNC. They live about 2 hours east of us in Wilmington and we're looking forward to going down there to celebrate her birthday party this weekend! Shelby's parents did not know ahead of time about her heart condition so they were in for a real scare a couple of days after Shelby was born and they were getting ready to take her home and she started turning blue. Shelby was rushed to UNC for her HLHS diagnosis and surgery. We have continued to stay in touch with them since we first met last summer right after Ethan was born and recovering from his first surgery. A few weeks later, we met up with them again for Shelby's second surgery. Having a first birthday is a big milestone for all parents, but you never realize how big of a milestone until you've had a child that you weren't sure would even live to see their first birthday. God is so good to this family and ours as well.

Shelby's mom has also been real active in trying to establish a family support group for pediatric cardiology patients at UNC Hospital since it's the only one in the state without a formal support group. In my spare time, I've been trying to help out whenever I can too. The UNC Pediatric Cardiology Dept. has an annual reunion for all it's heart patients so we're hoping to really have our support group in place by the time of the reunion so that we can spread the word to all the families out there.

Shelby's parents are also on the Parent Advisory Panel for the state-wide cardiology nurses conference being held at UNC this May. You may remember me mentioning this back in January when we were first invited to be a part of this 4-family parent panel. We are looking forward to this opportunity to share how God has forever changed our life by giving us our sweet boy and protecting him through his heart surgeries and treatment at UNC!

Fourth, Ethan had his first playdate yesterday! We went over to a friend's house who has a little girl about a month older than Ethan. This was her first playdate with a boy so it was fun to watch them interact while I got to talk with the other mom. Now that we're able to leave our house more, I look forward to taking Ethan out for other playdates and activities for Ethan to interact with other kids.

Well I think that's all the updates for now. As always, thanks for checking in on us and for your continued prayers for Ethan's health. God is so good to us! Have a happy Easter everyone!

Cardiologist checkup

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

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

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

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

Go Heels!

Ok, sorry for all of you who are not UNC fans, but I just had to put that out there. Besides already being Tarheel fans, we've got even more reason to be since we've spent so much time there in the past 10 months for prenatal checkups and all of Ethan's care before, during, and after his 2 heart surgeries.

Tonight's the big "battle of the blue" game between UNC (light blue team) & Duke (the dark blue team) - for those not from NC/don't keep up with college basketball. Below is a picture of Ethan, all decked out, ready to watch the game with Mommy tonight!

Oh yeah, and`speaking of UNC, Ethan's got his first cardiologist appointment post-surgery tomorrow. The plan is to get his vitals (as usual) then do an echo (ultrasound of his heart) like we do about every other visit. Please pray things will look as good internally as he seems to be doing externally with healing. Usually UNC doesn't discharge their cardiac surgery patients until they have had an echo but since his oxygen sats were in the upper 80's, they decided not to do one just for the sake of doing one. That was encouraging news for us!

Also, our biggest request right now for Ethan is that we go back to UNC on Tuesday, 2/26 for another swallow study. We're really tired of thickening his bottles and we'd especially like to be able to start giving him juice. Also, when he was sick last week and the pediatrician had us give him Pedialyte, it made us nervous about him aspirating (swallowing it down his windpipe instead of down his throat - the whole reson we have to thicken his bottles in case you didn't know) the liquid.

Well that's about all for now. Sorry it's been a while since we posted pictures, we plan to get more up soon, now that we're all healthy again!

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.

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.

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.

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.

32 weeks and counting

Yesterday we went to see the pediatric cardiologist, Dr. Cotton for our second echocardiogram of our son's heart. Dr. Cotton confirmed that Ethan still has HLHS (Hypoplastic Left Heart Syndrome) and spent over an hour and a half with us, being very thorough with his exam and explanation of what he was seeing on the echo, then in describing the series of 3 heart surgeries that our son will be having.

His first surgery is called the Norwood Procedure, and it will most likely occur when Ethan's about 3-5 days old. The surgery involves stitching the large pulmonary artery together with the small aorta, to make a new larger aorta. Then a small tube (shunt) is temporarily put in place to connect the artery going to the lungs with the new aorta. Then the wall that separates the top two heart chambers is removed (this is called an atrial septectomy), allowing blood to flow between the two atrium. The narrowing of the aorta is then opened and the connecting blood vessel is removed. As a result, this surgery helps the heart bypass the underdeveloped left ventricle, allowing the oxygenated blood to reach the body.

Even though we had heard all this detailed explanation from Dr. Cotton nearly 13 weeks ago, it was great to have him take his time with us and not make us feel rushed! We are thankful to have such a great doctor on our son's medical team and look forward to working with him for years to come!