First Church Service

Well today we braved taking Ethan out in public by going to church today! Doctors orders are to only take him out in public when absolutely necessary (to avoid overexposure to germs) and it was absolutely necessary for us spiritually, mentally, and physically to be back at our own church. It was great to get to hear a biblically sound sermon (unlike the one we heard our last week we were in Chapel Hill) and enjoy some contemporary worship and have some great fellowship time with our friends and even meet some new faces of people who said they've been praying for us. For those of you reading this blog that don't know us, my (Julie) dad is one of the pastors at our church of nearly 2,000 members and he does an excellent job at preaching! He has managed to even slip Ethan into his sermon illustrations a few times so many people have been able to find out about our main website: http://www.ethanmiles.com/ and be able to stay updated through this blog to know how to keep praying for our sweet son.

Please continue to pray that Ethan continues to do well, and wisdom for us about his preventative care. Right now we're trying to sort out what to do about his weekly weight checks that his cardiologist and surgeon are requiring. For these first few weeks that we've been home, we've had a home nurse that has come to weigh him and check his blood pressure and pulse ox, but our insurance year starts over tomorrow (Oct. 1st) and that means we have to start all over with our deductible (we had obviously already met our deductible and maximum out of pocket expenses just with the surgery so the nurse was paid 100% by our insurance!).

The home nurse is great because we don't have to go to the pediatrician each week, and risk being exposed to any of the sick kids. The pediatrician doesn't charge us (or our insurance) anything for just doing a weekly weight check, but the home nurse will charge our insurance for each visit - which will end up costing us more until our deductible is met (the new plan that starts Oct. 1 is a high deductible plan). So you see, we need guidance and wisdom to decide if the extra cost for a home nurse is worth it so Ethan won't be exposed to sick kids at the doctor's office, even though we have been approved to go first thing in the morning, during the first 30 minutes the office is open, before any patients are scheduled.

First Bath

Aunt Jessica and Uncle Brandon brought us dinner Friday night and ate with us! It was nice to have the adult interaction and not have to cook either! Thank you, Thank you, Thank you! After dinner, Brandon got to feed Ethan a bottle for the first time. Then he and Dan went upstairs to shoot some pool while Jessica and I hung out with Ethan. After they left, we started on Ethan's bedtime bath.

Up until now, Ethan's only been having sponge baths because his umbilical cord refused to fall off until Wednesday of this week. He hasn't been enjoying the sponge baths too much, so we weren't exactly sure how he'd handle a real bath. We were glad to find out that he loves it! He was a little fussy when we were undressing him (as he always is - guess he gets his modesty from his mommy!) but as soon as he felt the warm water, he quited right down! Mommy did the bathing and daddy was the photographer - pictures are sure to come!

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!

One Month Checkup & Lactation Consultant

Yesterday was a long day so forgive me for no post. The pediatrician appointment went pretty well. We saw a different doctor, who was a lot more thorough and I felt more comfortable with. Ethan seems to be doing well over all, and no immunizations were given! He'll get those at his 2 month checkup, along with the start of Synagis - a monthly shot during fall and winter, to prevent catching RSV (for more information, visit synagis.com). His pulse ox was good - 82% and he weighed in at a whopping 10lb. 3 1/4oz. - a whole 2 pounds heavier than his birth weight!
Also, 2 days ago I mentioned that Ethan was awake almost the entire day and I had hoped he'd sleep well that night and he did - 5.5 hours! But last night was a different story, he was asleep most of the day and then woke up every 2 hours. He's slept about half the day today, so we'll see how tonight goes! :-)

Today was another big day, first we went by my office for a visit with my co-workers and a meeting about the change in insurance that takes effect in October. Then we went to a different branch of Ethan's pediatrician's office to meet with a lactation consultant. To recap, with Ethan's heart problem he burns calories faster so all his feeds have had to be fortified with extra calories - by adding a couple teaspoons of formula to any bottle we give him. As a result, I haven't been allowed to breastfeed, so I've had to exclusively pump. Well as any mom reading this knows, pumping's not the most fun thing in the world, and it takes extra time to pump, then take the time to bottle feed. It's hard to get anything else done during the day! Therefore, I'm getting very frustrated and decided it was time to seek help! My main frustration has been that each pumping session only produces half the amount of milk that Ethan takes at each feeding so I feel like I'm not able to provide, therefore stressing myself out and that's not helping my supply at all!

As a first time mom, this feeding issue has been extremely difficult for me emotionally and physically. I want the special bonding time of nursing that most women get, and the cardiologist has said I can try breastfeeding once a day max, but that he needs the extra calories the rest of the time. Also, with bottle feeding, we know exactly how many ounces he's eating. Plus, because he failed the swallow study a month ago, all his feeds have to be thickened so he doesn't aspirate (let the food go down his windpipe instead of down his throat into his stomach). So at our visit today, Michelle tried to teach Ethan to latch on, but he's spoiled - a bottle is much faster to feed from than me! She has given me tips to try to get Ethan to latch on, which I will try daily, and she's also going to have me come back weekly for a couple of weeks to work on it in the office.

Besides trying to nurse once a day, she's suggested I try the herbal supplement, Fenugreek, to try to help increase my supply. I'm very pleased and encouraged by Michelle's patience and understanding and positive attitude about being able to get him to nurse when he's this old, and also about being able to still increase my milk supply. In adition to the Fenugreek, she told me to relax, get lots of rest and sleep, drink lots of fluids and eat well, continue pumping/nursing and also stop cooking, cleaning, doing dishes and laundry! I'm not going to argue with that!

So anyone wanting to help us out, we've appreciated your financial gifts we've received towards Ethan's medical fund, but what we could really use at this time is some help with meals! Tonight we're having our very first meal brought to us - thanks to Dan's mom!

Week 2 Alone

Today was a good day for the start of my 2nd week home alone with Ethan. Nothing eventful happened and we just enjoyed lots of mommy-son time. Ethan was awake nearly the entire day, so hopefully he will sleep really well tonight! Tomorrow we go back to the pediatrician for Ethan's one month checkup (I think he's getting his immunizations so he won't be very happy and neither will I). Ethan's CICC nurse clinician, Kay, at UNC called his pediatrician last week to confirm that we can go for weekly weight checks without having to pay a copay each time, which is a big relief. I called his pediatrician to confirm and they said that if I go early in the morning, that I can get right in before any of the appointments show up (they open at 8 but don't start seeing patients until 8:30), so that's less exposure to germs!

Be praying for our pediatrician appointment - 9:40am on Tuesday morning. I dread having to see him get his shots but I know he really needs them. We can't risk getting any major sickness prior to his next surgery. He will also have to start going monthly (every 28 days to be exact) to get his RSV shot - which he'll get Oct.-April. This is not a true vaccine in that instead of getting injected with a tiny bit of the virus, instead, he gets injected with the antibodies that his body would make to help fight it. What a great idea for an immune booster!

Tonight Ethan's cousins, Rebecca (5yr. old) and Marissa (2yr. old) Gunter (Dan's sister's kids), came to visit. They live exactly 1 mile down the road from us, so it's nice to have them close by! They are so excited to finally have a cousin close by, and I think it'll be great for them to grow up with family so close. Amanda and her husband, Reggie, have been so gracious to hand down all their girls' old baby gear (swing, carseat & stroller, bassinet, toys, high chair, etc.). The carseat and bassinet have been used the most, but we're starting to introduce him to the swing and he seems to like it, as long as it's not right after he's had a bottle! One of these days we may even take him for a walk in the stroller, if it will ever cool down!

Thanks for continuing to read our blog, and sorry for taking so long to post an update. Just remember that "no news is good news". We've just been so busy adjusting to life with a baby that we haven't had much time to do anything else!

Day 2 Alone

Well it's Tuesday afternoon and I'm happy to report that today was uneventful! Ethan, Gray-c and I were all pretty tired this morning and took naps between Ethan's feedings until 11am! It was nice to get caught up on some sleep today. Gray-c is very jealous and clingy and has to always be touching me or sitting on my lap. Not only is this week a big adjustment for me, but for her also. At least when my parents were here, there were extra hands to help out, plus their cat, Emma, was around to keep her company. But now Gray-c's having to learn to be patient and wait her turn for my attention. I can't play ball with her 24/7 like we used to before we had Ethan here (which is fine by us b/c we tire out after about 5 minutes and now we have a good reason to not play with her all the time!). Well that's all the news for now, praise God that Ethan continues to do so well!

First Week Alone

Well Mom and Dad are gone and Dan is at work as usual so this is the first real week alone with Ethan. Time to get settled into a realistic daily schedule. Yesterday was so crazy there was no time for an update.

I began the day with Ethan's home nurses showing up 2 hours early (9:15 instead of 11:15 so I was still in my pajamas) and he was already fussy because it was time to eat when they showed up. Fortunately they are only here for about 30 minutes! All his vitals looked good and his oxygen sats were at 82 today (they're usually around 74-75)! He still weighs 9lb. 4oz., same as he did on Friday. After the nurse visit and Ethan was fed, then Gray-c (our dog) threw up on the living room carpet. So I cleaned that up and tried to get online but had connection problems.

At 11am, Dan called and invited me to have lunch with him, and I gladly accepted it as a nice break from the dog. So I packed a bottle for Ethan, and got ready to go and decided to change Ethan's diaper before we left. As if cleaning up after the dog wasn't bad enough, Ethan decided to pee on me and all over his clothes and the couch where I was changing him (including the thick cloth diaper we use for burp cloths). Once that was over and we got all cleaned up and changed clothes, then I noticed another wet spot on the same couch and realized it's where Gray-c threw up again! So I did my best to quickly clean that up so I could get to lunch (Dan wanted me to leave at 11 when he had called me so we could beat some of the lunch hour rush at K&W but now a whole hour had passed. By now, it was time for Ethan's next feeding so I made yet another bottle so I could feed him and still have a spare while we're out.

Lunch was nice - Ethan slept for the whole car ride and lunch. After lunch, we showed Ethan off to all Dan's coworkers. On my way home, I spontaneously stopped by my office to show him off as well. We were there for a couple of hours so I'm glad I packed that extra bottle. Ethan woke up about an hour after I'd been there and was hungry so a couple of the ladies in my office asked to feed him and our receptionist, Carolyn, was the lucky one!

Then we came back home, fixed dinner and had a pretty uneventful rest of the evening. Hopefully the rest of the week won't be so crazy!