update

Oops, sorry for not posting an update last night after Ethan's procedure. We were all exhausted and went to bed early last night. All went well, we were told on Friday that we had to be there at the hospital to check in at 7am, the procedure would start at 8:30 and we'd be leaving by 10am.

Well nothing ever seems to go according to schedule in a hospital! We got there at 7am, got checked in, hoped Ethan would go back to sleep but he didn't. He started getting fussy and hungry but wasn't allowed to have anything since midnight so we did our best to keep him preoccupied with toys, walking the halls, etc. They finally called us in to get vitals and sign the consent form a little after 8am. Then more waiting... the anesthesiologist finally took Ethan at 9am. We ran and got breakfast in the cafe and quickly returned to the waiting room because we were told that his procedure would last anywhere from 30min-1hr. Sitting there in the cafe brought back so many memories from Ethan's first two surgeries and we both thanked God that this was such a minor OUTPATIENT procedure with no chance of being admitted! We got to go see Ethan about 10:30 then we got discharged around 11am.

After discharge, we went up to the CICC floor (step down unit after his heart surgeries) and visited all our favorite nurses. They were excited to see us and see how big Ethan is getting. They love having their patients come back and when we were in the area last month for the parent panel of the cardiology conference, they reminded us to come visit their floor any time we're in the area. Ethan was still groggy from the anesthesia but he did manage to give the nurses a little smile.

Ethan slept the whole hour-long drive home plus the time it took for us to run by Target to get his 2 prescriptions filled - one was an antibiotic ( to prevent infection) and the other was Tylenol with Codeine. He'll be on the antibiotic for 5 days and the Tylenol just as needed. Once we got home, Ethan had a bottle with his Tylenol w/codeine then slept from 3:30-7:30. We woke him up to feed him and give him his antibiotic then he went back to bed around 9 and slept till 6:30 this morning. He's slightly off schedule but we're catching up.

He doesn't really seem to be in pain today, which is amazing! He's back to "slithering" on his tummy (he can crawl but doesn't like it as much), which makes Dan cringe - afraid that being on his tummy is causing him unnecessary pain - but it doesn't seem to bother Ethan a bit! What a tough little guy we have!

He's got a clear bandage over his surgical site which will fall off in 3-10 days but we've still been instructed to not immerse him in water (no baths or swimming pool) for 3 whole weeks! Poor little guy, I know how much he'll miss that - he's getting to be a good little swimmer. :-(

One final update - Dan took the whole day off to be with us yesterday and as we were letting Ethan watch a cartoon before taking his nap, we both got to see him wave for the first time (at the cartoon characters). It was so cute! And today, I introduced Ethan to bananas. He's had the Gerber baby food but never had the real thing until today and he loved it.

Thanks for checking in on us. We are so thankful for all the fervent prayers and continued good health of our precious son. Tonight we're off to celebrate the life of another special person - my sister (Ethan's aunt) Jessica. Happy 25th birthday sis/aunt!

update and pictures!

Sorry for the delay in any posting lately. Things have been going great and we haven't had any doctors appointments lately so not really anything to update. Ethan continues to do well sleeping at night - sleeping on average, 12-13 hours a night, plus several long naps throughout the day.

We are continuing to work on getting him used to non-thickened bottles by doing one bottle of regular formula when he is most alert (usually first thing in the morning or after a long nap). He is also enjoying trying new baby foods like pears, carrots, and even chicken (all pureed thanks to Gerber!).

Ethan's still not sitting up on his own, but we're almost there. He can finally roll over and has started doing it nearly every time he's on his changing table so we have to keep a close eye on him!

We had our first little "accident" with him last Wednesday. We decided to go for a family walk after dinner but somehow forgot to buckle him in the stroller. Next thing I knew, the stroller felt a little lighter and I looked down, and there was our son - face down on the road! What a scary sight for all, but fortunately Ethan came away without a scratch! After a brief moment of cuddling with mommy, Ethan calmed right down from his screaming and we put him back in the stroller and continued on with our walk. We've put Ethan in his stroller several times since then and he hasn't seemed to be traumatized by the even, so that's good!

Below are some recent pictures of life in the past couple of weeks for you to enjoy!

Tipping over!

Mommy propping me back up.

Mommy & me watching the jellyfish at the aquarium.

Are we done yet?

my tongue...

Easter at Grammy's - my first taste of mulch!

Playing in my highchair (notice the massive amounts
of drool covering my shirt!)

Playing in my Exersaucer!

Feeling Better!

Lots of updates today...

First, thanks for your prayers for our family this week as we get through our first family sickness together. I think we're finally all over the worst of our stomach bug! Ethan's even gotten back to a more "normal" eating schedule - meaning that he's not taking all 4 oz. of his bottle like he was pre-surgery, but at least he's eating 2.5-3 oz. every 3 hours. Since surgery, he would even skip feedings all together, and being sick this week, it's not surprising that he wasn't much into eating at all. I'm just glad that he's at least taking most of his bottle each time and not skipping any more feedings.

Second, Ethan does continue to wake up several times each night, although it's starting to get spaced out to every 3-4 hours, which is better than getting woken up every hour! As the stay-at-home parent, I am the one who gets up to check on Ethan every time he cries so my sleep has been quite interrupted this week, which I think has contributed to me being the slowest to recover from this stomach bug!

Third, Ethan got his chest tube sutures removed this week and his nurse at the pediatrician said he was still healing great with no sign of infection! He was such a brave boy and didn't squirm or even make the slightest sign of discomfort while the sutures came out!

Finally, thanks for your prayers for baby girl Annabelle Butcher! Her surgery went well today, but she definitely still needs prayers as the next 24-48 hours are very critical, as it's the time when the most swelling occurs. Again, you can follow her journey at their blog site: http://www.babygirlbutcher.blogspot.com/. We know just what they're going through - it's hard to believe we were in their shoes almost 6 months ago - boy does time fly by!

Better night

We made it over 24 hours without Ethan throwing up! As mentioned in my last post, Ethan was on Pedialyte most of the day yesterday and he managed to keep it all down! So at his normal 7pm feeding time, I tried giving him 2oz. of formula and he seemed to do fine and want more, so I gave him 2 more. He did fine with that too so I fed him another 4 oz. bottle at 10pm and put him to bed. He managed to keep that down all night and I fed him again around 6:50am and he kept that down too! But at his 10am feeding, he took 3 oz. then threw it all up. :-(

Also, I think he had some bad dreams and/or may have been in a little pain last night because he woke up every single hour from 1:30am-8am. You could seriously set a clock to it! Every time I'd go check on him, he looked like he was asleep but he'd just be screaming. So I would give him his pacifier, rub his tummy and side, tell him everything was ok and that he's home now and he'd fall right back asleep and repeat the screaming an hour later. At 3:30am, I gave him some tylenol in case he was in any pain. But I don't think that was the problem because he seemed fine all day yesterday.

The nurses warned us in our discharge papers that it's not uncommon for peds cardiology patients to have frequent nightmares once we're home, but I don't remember him having them last time we came home - maybe it's just because he's older and a little more aware of things now. Hopefully tonight we'll all sleep better! Thanks for keeping us in your thoughts and prayers!

Day 2 in the CICC

Dan and I have enjoyed getting caught up on some much needed sleep, not having to get up and feed Ethan during the night! We got over here to the hospital around 10am. One of the cardiologists and his outpatient nurse were in his room, they are still saying he's doing great! He had a chest x-ray this morning and they said it looked a little better than yesterday, and it was already looking good yesterday! Praise God for what a smooth journey this has been so far, if things continue to go this well, we may be out by Monday.

The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!

Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.

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!

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.

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!

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!