First Haircut!

Ok, so we've put off the inevitable long enough! Last Saturday (10/4/08) Ethan had his first haircut. No more cute curls :-( and (hopefully) no more strangers calling him such a "beautiful girl" for now! Ethan's Mimi (Julie's mom) has a wonderful hairstylist that she uses named Rachel and she's known and been praying for Ethan all along - Rachel even has one of our blue "Pray for Ethan" wristbands that we distributed during my pregnancy last year. Dan will probably be the official hair cutter for Ethan most of the time, but we wanted to give Rachel the honors of being the first one to cut it and give it some style so that Dan will just have to trim it. Below are some pictures of the momentous event!

Waiting in the lobby for our appointment

One last close-up of the curls

Rachel begins cutting - bye-bye curls

Trying to keep Ethan distracted with toys and baggie of his clipped hair!

Toy distraction not working, trying food!

Ta-Da! All done!

Oh and another first - Ethan tried peanut butter today and loved it (like there isn't a food yet that this kid doesn't enjoy!) Blogger's taking too long to upload those pictures so I'll try to post again tomorrow.

Busy Boy

And they say boys are easier to raise than girls... I'm still willing to debate that one right now! Ethan's quite a little busy body - not quite wanting to crawl (although he likes to sleep on his knees and can easily support himself and rock back and forth while on them) so he "slithers" along on his belly, pulling himself with his elbows and helping himself move along with the force of his right knee. He's getting to be quite speedy and certainly keeps us on our toes all the time!

He's also got quite the eyesight - picking up every single speck of dirt/crumb/hair/etc. off the carpet and putting it in his mouth! Most recent findings in his mouth include silk plant leaves, carpet & dog toy fuzz, dry dog food, half-popped popcorn kernels and a few tiny pebbles. The funniest is watching the pink drool drip down his chin from the red pieces of dog food. Fortunately Dan & I are getting quick at reading his cues and have been able to remove nearly all items before swallowing (have only missed a few tiny pieces of lint I think!).

Oh, Ethan's also (in the last week or so) been able to go from lying down to sitting up all on his own! Several times we've come in to his nursery to get him up from naps and have found him sitting up in his bed and he's also doing it consistently on the living room floor!

As for his heart, all seems to continue to be going well. We'll know for sure though when we go back to the cardiologist for a checkup next Thursday, 6/26, so please keep that visit in your prayers. He is even doing well with increasing the amount of non-thickened bottle feedings to where we haven't been thickening them for a couple of weeks now!

Thanks for checking in on us and for continuing to pray for us regularly, we really appreciate it!

more firsts

Wow, this has been a busy month for us. Sorry for the long delay in updating. This month, Ethan had lots of "firsts"! We hope to have some new pictures soon too.

Here's a quick rundown of all Ethan's "firsts" for this month:

- May 10th: we went Strawberry Pickin' (for my birthday - a family tradition for me growing up)
- Also on May 10th: Ethan had his first late night of staying out past "curfew" (aka bedtime) with his cousins and aunts & uncles while Dan took me to a nice birthday dinner!
- May 11th: first Mother's Day (he even colored a card for me with Daddy's help) and he turned 9 months old!
- May 17th: first time in the church nursery while Dan & I helped lead a budget conference (he was very good, didn't cry at all and kept the workers entertained with his babbling & overall cuteness!)
- Also May 17th: Ethan & I went to our first heart reunion at UNC Hospital' Farm for all the pediatric cardiology patients (it was a fun cookout with games for the older kids and a chance to see alot of our nurses and of course the surgeons who have helped fix Ethan's heart)
- May 18-21: Ethan's first vacation (we went with my parents to North Myrtle Beach)
- May 19: first visit to a beach - he enjoyed playing with the sand and watching the waves but the water was a little too chilly for swimming
- May 20: first time in a swimming pool, again it was a little chilly but his Aunt Jenny had a fun time teaching him to kick and float with her help (she's a former infant/toddler swim instructor for the YMCA)
- May 26: first Memorial Day cookout

Ethan also went to the pediatrician last week for his 9 month well baby checkup. He weighed in at 19lb. 13 3/4oz., putting him about the 35% mark. He also measured 29 in., putting him about 70%. He continues to be a busy baby, exploring everything he gets a hold of. He's doing great with rolling all over the floor and has started making diaper changes a challenge by wanting to flip over onto his tummy. He seems on the verge of crawling but he may skip that phase altogether, we'll just have to wait and see. We continue to thank God daily for each day we have with him and for how well he's doing physically with his heart, developmental progress, and hearty appetite. Until we hear if we'll ever be able to do another swallow study, we continue to help him "practice" his unthickened bottles 2x/day and do the rest still thickened with the rice cereal. He enjoys eating Cheerios, Gerber Puffs and all his baby foods. Ethan has also started saying "Ma Ma" randomly!

Thanks for checking in on us, we should have some vacation pictures to post soon!

P.S. We are looking forward to an exciting event on Wednesday. We are going back to UNC to be on a parent panel for their annual cardiology conference. This year it's all about Single Ventricle heart defects like Ethan's! We are one of only 4 families selected to answer questions from all the nurses attending this conference. We pray that we can be of assistance by participating and that we glorify God through our responses.

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!

swallow study update

We're back from UNC Hospital and unfortunately, there's been no change in Ethan's swallowing since our last study back in October. :-( Thanks for your prayers, I guess God has better plans than what I was praying for. Needless to say, I am very discouraged by the study results. But the good news is that since Ethan doesn't have his final heart surgery for a couple of years, that we can be "risky" as the speech therapist called it today, and try giving Ethan one un-thickened bottle a day for a couple of weeks. If he doesn't seem to get pneumonia, or bronchitis or any other kind of lung infection then we will be able to try 2 un-thickened bottles a day!

As soon as we find our memory card for our camera, we'll be able to post some new pictures of Ethan so bear with us and pray that we find it soon!

Swallow Study Tomorrow

One more update... I've got to take Ethan back to UNC tomorrow for another swallow study. This will be his third time doing the study so I'm really asking for a lot of prayer that he will pass the test this time around. It's routine to do a barium swallow study on heart surgery patients shortly after surgery (Ethan had his first study about 2 weeks after surgery) to see if there was any nerve damage from the surgery since the heart is so close to the nerves that affect swallowing and aspirating. We were going to wait and have Ethan's 2nd swallow study around the time of Ethan's 2nd surgery, but I was just so impatient and Ethan's eating time had improved so much that we ended up having his 2nd swallow study back in October, when Ethan was 2 months old. Now that he's 6 months old and has had his 2nd surgery, we're able to do a 3rd study. Ethan came so close to passing his 2nd study, so please join us in prayer that he can definitely pass this time around.

In case you're just joining our blog or in case you forgot what this swallow study reveals, here's a quick recap. I believe there are different types of swallow studies so in the swallow study that Ethan does, he is given a bottle of barium to drink while he gets an x-ray done of his throat and chest. The x-ray technician watches closely to make sure that Ethan swallows the liquid down his throat and into his stomach, without any liquid silently aspirating (being swallowed into his lungs without him coughing). Ethan will pass if he doesn't silently aspirate.

When Ethan had his first study done, it was taking him about 30 minutes to drink about an ounce of his bottle and he was getting too tired, which was part of the reason for the aspiration. I had the 2nd study done because he was up to drinking 4 ounces in under 3 minutes. Now, at 6 months old, Ethan drinks 5-6 ounces in 3 1/2 minutes. The swallow study lasts for about 20 minutes, which I don't think is very accurate because he never takes that long for a bottle, but I learned that they push the babies that long to "prove" that it's still possible for him them to silently aspirate.

I am more nervous about this swallow study than about both heart surgeries combined. I really want Ethan to pass so that we don't have to bother with thickening his bottles any longer. But more importantly, I want him to pass so that we don't have to worry about him silently aspirating in the event that he gets another stomach bug (like he had the day after we came home from the hospital last month) and has to take Pedialyte, which I can't seem to get anyone to tell me how to thicken. Also, if we don't have to thicken his drinks, then I'll be able to start giving him more variety of liquids like juice and water.

So, (as if I haven't said this enough already) please join us in prayer today and tomrrow that Ethan can pass his study finally. Our appointment is at 2:30 on Tuesday, 2/26 at UNC. Thanks in advance for your prayer and support!

6 months old!

Note: Ok, I originally wrote this yesterday(Monday, 2/11) but wasn't able to post it until today (Tuesday, 2/12) because Ethan was very fussy all day so bear with me in the references to "today", meaning Monday, 2/11.

Ethan is officially 6 months old today! I remember when he was born, loving the brief moment that Dan and I got to hold him before the nurses rushed him off to the NICU to take care of him. Way back before our precious son was born, we were already trusting God with Ethan's life, however long that time may be with him. God has been so gracious to us in helping Ethan's heart to function so well, thanks to our wonderful team at UNC Hospital. We feel so blessed to be able to celebrate Ethan's half-birthday today!

To mark this momentous day, Ethan and I started the day with a well-baby 6-month checkup at the pediatrician. The doc said he's looking great. He weighs 16 lb. 2 oz. (4 oz. shy of doubling his birth weight!) and is 27" long. Due to his shots, he's been sleepy and fussy all day so I've got my hands full!

I think Ethan's also going through a growth spurt and he is now (finally!) drinking over 5 oz. at each feeding! He also enjoys eating baby foods like applesauce, sweet potatoes, bananas and we're still working on getting him to eat green beans. He's officially outgrown his infant car seat so yesterday we transitioned him to his big boy convertible car seat (meaning that it's rear-facing until he turns one, then we can turn the seat around to be forward facing until he outgrows it in a few years). This is an exciting milestone but it makes going out to eat a little tricky since he can't sit up on his own yet so he doesn't do well sitting in a high chair, but we're making it work.

That's all for now, thanks for continuing to read our blog and keep us in your prayers. Our next big appointment is in 2 weeks - Tues., Feb. 26 at UNC for an x-ray swallow study. I'm actually more nervous about this than his last surgery. This will be Ethan's 3rd time to do the study. I'm so tired of having to always thicken his bottles with rice cereal to help him swallow his bottle down his throat and into his stomach instead of into his lungs. Although we're pretty used to thickening all his bottles, it's more about being able to start giving Ethan juice and water than about the extra few seconds it takes to measure and add the cereal. Please pray that the '3rd time's a charm" as the expression goes so we can not have to worry about giving Ethan juice and other liquids as he gets older.

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!

Rough Night

Poor little guy, he slept great our first night home, but last night wasn't so good. He got back to his normal eating schedule yesterday and seemed to be doing well, but he woke up crying at 3:30am (he usually sleeps from 10pm-6:30am). I went in to check on him and then he threw up. He continued throwing up every 15-20 minutes for the next 2 hours. I finally decided to call UNC's CICC unit (the floor we were on right before we went home) and asked them what to do. They suggested trying Pedialyte but we don't have any plus I didn't know how to thicken it. So they suggested feeding him one ounce/hour so he wasn't running on a totally empty stomach and so he wouldn't get dehydrated.

Ethan took the first ounce fine and seemed hungry for more so I let him have another half ounce and gave him a good burp but about 10 minutes later he threw up again. He finally fell asleep around 6:30am and slept till I woke him at 8:30am to go for his pediatrician appointment (just a routine follow up that the hospital scheduled for us). He seemed hungry so I tried feeding him 2 ounces and he gobbled it all up, but as I was burping him, he threw it all up again - a total of 8 episodes since 3:30 this morning. By that time, we were both exhausted but it was time to leave for the doctor.

His doctor said he looks great, his oxygen sat was in the mid-80's and he weighed almost 15 1/2 pounds, which is what he weighed before surgery. The doctor gave us a sample of Pedialyte and told us not to worry about thickening it, to just start him out very slow - about 2 teaspoons every 15 minutes for 2 times, then gradually increase the dosage and spread out the amount of time between feedings until we're up to 2oz. every 2 hours, then I can try mixing it with formula. His doctor thinks he may have caught a little bug since we came home on Saturday.

So please pray that Ethan can keep his Pedialyte down and eventually get back to taking a bottle by the end of the day. If it's not a stomach bug, I told the doc I think it could just be that he's adjusting to getting back to eating his normal eating schedule since he wasn't eating very much at the hospital. He fell asleep on the car ride home from the doctor so I'm just letting him sleep for a bit before I start the Pedialyte.

Still on oxygen

Ethan wasn't doing well off oxygen - his sats dropped from the mid 80's to mid 60's almost right away so he's been back on .2 of oxygen since my last post this morning. He has to consistently be in the mid 70's-mid 80's in order for them to let us go home.

Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.

Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!

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.

On the CICC floor!

Well around 5:00 pm, we officially got moved upstairs to the CICC (Children's Intermediate Cardiac Care)! I never thought I'd say it's great to be back in any hospital room/floor, but this is kind of like the "celebrity" floor because the rules are so lax, plus there are full bathrooms and a fold out couch in each room, so we have the option for one of us to sleep here with Ethan if we want.

We saw both of Ethan's heart surgeons early today when we were still down in the PICU and they were both amazed at how fast Ethan's recovering! His main surgeon, Dr. Mill, told us yesterday in the debriefing that post-Glenn surgery patients usually spend 2-3 days in the PICU then 5-7 in the CICC. The main thing we "work on" is the eating, but Ethan's been doing pretty well with that, at least up until dinner time. Now that he got moved up here, he's only been interested in eating 2oz. instead his normal 4oz. I think part of it is that he's "clogged up" - he hasn't pooped since yesterday, so that's our big goal for the night - getting unclogged so he'll have a normal appetite again! LOL

Wednesday Morning

We arrived at Ethan's room about 10:15 am to find him wiggling about, keeping two nurses busy. Gone were the chest tubes and his arterial line in his left arm. He's got a central line in his neck and another IV line on his foot but they are just pushing enough clear IV fluild through to keep the lines from getting clogged. We were expecting to see a NG tube for feeding him. Instead, we received report that he had already taken 2 ounces of formula via bottle. Awesome!

He is very aware and we even got some smiles from him! Julie gave him 4 more ounces from a bottle - that is a regular feeding for him. Can you believe that? He is off of morphine and started a much more mild, extended release type pain killer. It was great to see him so lucid today. He is progressing faster than expected. One of his Drs said he should move up to the CICC today. The CICC or Cardiac Intermediate Care Center is the step-down unit from the PICU or Pediatric Intensive Care Unit (where he is now).

We are so grateful for how well Ethan is doing. It is wonderful to have so much support from friends and family. Your prayers have been a priceless gift that have made all the difference in the world. Many have asked how they can help us financially. We have set up a Medical Trust Fund through the Mitchiner Law Firm to provide a vehicle to ensure Ethan's long-term heart-related health care needs are met. If you would like to give to the Ethan Miles Medical Trust, please make your checks out to Ethan Miles Medical Trust and mail to Monte & Barbara Miles, 4905 Latimer Rd., Raleigh, NC 27609. The trust is set up so that any funds received must be spent only on Ethan's medical heart-related expenses. To date, Ethan has received just over $2000 dollars to help with his bills. Thanks so much!!!

And now for some fresh pictures!

First bottle that mom got to feed me after surgery!

Another view of me being fed by mommy!

Mommy fed me at 11am and Daddy fed me again at 2pm. I'm only on 24 cal/oz, still thickened feeds, instead of 26 cal/oz like at home but I've got a healthy appetite. My 11am bottle, I took my normal 4 oz. and at 2pm I took 5 oz.!

We just got word that we've got a bed upstairs in the CICC so we should be up there within the next couple of hours! Praise the Lord for such fast recovery this time around!

Messy baby

So yesterday, I sat down to read the latest on baby Julianne (see link on right). Her current blog entry mentioned how they had a messy day with Julianne at their cardiologist office. Without getting too detailed, lets just say she had stuff coming out both ends and it got all over Julianne and her mom! Unfortunately, that has been the "norm" for them recently. Well we sort of had our own similar experience yesterday and today.

Poor Ethan, he just can't decide how hungry he is sometimes! We've been feeding him 6 bottles in a 24 hour period. These bottles have been only 4 oz. because they are still high-cal (26 cal/oz. as opposed to a normal formula bottle that is 20 cal/oz.) and still thickened with rice cereal to give even more calories per bottle. Well yesterday I experimented with his new bigger 9oz. bottle that I just bought. Basically I've done the math and a 4oz. 26 cal/oz. bottle is about the same as a 5 oz. bottle of 20 cal/oz. I tried giving him a normal 20 cal/oz. bottle without the rice cereal and he seemed to do ok for the first 3 oz. but then threw it all up. That was mess #1.

So I changed Ethan into his onesie that says "Automatic Sprinkler" - I bet you can guess what mess #2 was! Dan has prided himself in the fact that he hasn't been "automatically sprinkled" while changing Ethan's diaper so far. Well Ethan decided to change that record! Fortunately the leak was contained on the waterproof changing pad underneath him!

And shortly after the "sprinkler" accident, Dan fed Ethan his evening bottle - a regular 4 oz. high-cal/thickened bottle. All went fine with the feeding, but a few minutes later, Dan passed Ethan off to me to hold him for a bit. Ethan started sucking his fingers (he prefers them over his thumb) and gagged himself which made him throw up all over me for the 2nd time!

So then we decided it was bath time. He enjoys his baths, especially since I've started adding bubbles. He kicks and kicks in his baby bathtub over the sink, splashing soapy water all over the countertops - mess #4(not so bad!).

Then we jump forward to today - Ethan did great all day today, even for the few hours that his Mimi babysat him. But for his dinner, he took all 4oz. of his high-cal/thickened bottle and wanted more so we made him another 1oz. bottle. He seemed to do fine with that and STILL seemed hungry. So I let him sit in his bouncy seat for a little while to let his food digest and he started getting sleepy so I went ahead and gave him his nightly medicine and then he decided to throw up again. So I gave him a sponge bath, changed him into his jammies and he quickly drifted off to sleep so I took him upstairs to his crib for the night.

What an eventful 2 days! Well I hope you're able to get a little laugh out of this like we have! Oh, by the way, his cold is getting better and so is mine. I don't think the throwing up has anything to do with his stuffy nose. We're still on track for going to UNC next Friday, 1/18, for pre-op. If his cold is worse then we'll likely postpone the surgery, but I talked to his cardiologist office today and they said that he doesn't seem sick enough right now to postpone. That's good news because I just want to get this surgery over with and be back home once again.

Solid Food

Ethan has found a new food - applesauce! Yes, that's right, last Thursday, 12/27 we started introducing solid foods and he seems to like the applesauce. To get him used to it and to make sure he's not allergic, we're only introducing one new solid food a week. This week, we'll try out bananas. We're so pleased that he likes to eat and that he's gaining weight steadily. He's currently 15 lb. 4 oz. (6.92 kg). We're hoping that the introduction of solid foods before his surgery will help him out with any eating issues post-surgery. It's hard to believe we're under 3 weeks now! Please keep us in your prayers as time gets close.

Pray for good health and for us to not go insane (especially me - Julie - since I don't have the "daily outing" of going to work like Dan does) as we do our best to keep Ethan quarantined at home so that he can stay healthy for surgery. Even as much as a stuffy nose could postpone the surgery and we just want to get it over with as soon as possible so we can have our little boy back home with us again.

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

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.

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/.