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.
Sunday, September 30, 2007
Saturday, September 29, 2007
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!
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!
Thursday, September 27, 2007
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!
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!
Wednesday, September 26, 2007
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!
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!
Monday, September 24, 2007
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!
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!
Tuesday, September 18, 2007
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!
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!
Saturday, September 15, 2007
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.
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.
Tuesday, September 11, 2007
One month old!
Well today, 9/11/07, Ethan is officially one month old! He has had lots of "firsts" today. To start, Ethan's home nurse, Linda, came to visit. She will come back weekly for weight and pulse ox checks and we can call on her any time we have any questions in between. If Ethan had come home with the NG tube, she would also be available to assist with changing the tube and addressing any problems/questions we had about the feeding tube, but fortunately we don't have to deal with that!
Also, Ethan had his first bath today in his new little bathtub we received from one of the baby showers. Mom and I thought this would be a pleasant experience for him but he screamed and cried the whole time - I guess because he was naked and cold (two things he really doesn't like). Until his umbilical cord falls off, he can't be sitting in water so it was more of just a sponge bath (which he's had before and didn't fuss nearly as much).
Tomorrow, we'll be heading back over to UNC - but only for a visit with our friends Crystal and Ben and their HLHS baby girl, Shelby Glover. If you've been reading our blog regularly, you will remember that we met Shelby and Crystal a few weeks ago when Shelby came for her pre-surgery heart cath and they stayed at the RMH the night before the procedure. Crystal just got news today that Shelby's getting ready to have her 2nd heart surgery on Thursday and they hvae to be at UNC tomorrow for a pre-op appointment. We're going to visit them tomorrow night to support Crystal and Ben and to let Ethan and Shelby meet for the first time! Please be in prayer for their family. At 5 months old, Shelby is a very sweet, healthy looking little girl. We can only imagine how hard it is for them right now to see their daughter undergo the Glenn surgery and to wait for her to get through the surgery and go to recovery so they can see her again. Going through the first surgery (the Norwood) was hard enough on both our families, but the babies were so young that we didn't really have much of a relationship yet. Shelby is a real little person now, with a personality and character all her own. Before we know it, we'll be following in their footsteps as long as Ethan continues to do well.
Also, Ethan had his first bath today in his new little bathtub we received from one of the baby showers. Mom and I thought this would be a pleasant experience for him but he screamed and cried the whole time - I guess because he was naked and cold (two things he really doesn't like). Until his umbilical cord falls off, he can't be sitting in water so it was more of just a sponge bath (which he's had before and didn't fuss nearly as much).
Tomorrow, we'll be heading back over to UNC - but only for a visit with our friends Crystal and Ben and their HLHS baby girl, Shelby Glover. If you've been reading our blog regularly, you will remember that we met Shelby and Crystal a few weeks ago when Shelby came for her pre-surgery heart cath and they stayed at the RMH the night before the procedure. Crystal just got news today that Shelby's getting ready to have her 2nd heart surgery on Thursday and they hvae to be at UNC tomorrow for a pre-op appointment. We're going to visit them tomorrow night to support Crystal and Ben and to let Ethan and Shelby meet for the first time! Please be in prayer for their family. At 5 months old, Shelby is a very sweet, healthy looking little girl. We can only imagine how hard it is for them right now to see their daughter undergo the Glenn surgery and to wait for her to get through the surgery and go to recovery so they can see her again. Going through the first surgery (the Norwood) was hard enough on both our families, but the babies were so young that we didn't really have much of a relationship yet. Shelby is a real little person now, with a personality and character all her own. Before we know it, we'll be following in their footsteps as long as Ethan continues to do well.
Monday, September 10, 2007
First Pediatrician Appointment
We've now had 2 1/2 days at home with Ethan and he's been doing well. We use the pulse ox machine to measure his oxygen sats over night, and also a couple spot checks during the day. As long as the signal doesn't have any interference (i.e. Ethan's not moving around or his foot isn't cold while the sensor's on it), Ethan's been doing fine, with sats in the 70s.
Besides understanding what it means to be a sleep-deprived parent from nightly feedings, we have the added sleeplessness of dealing with his pulse ox machine that beeps every 4-6 minutes for no reason at all, and also alarms every time his sats drop below the safe range that we've programmed. Hopefully, in a few weeks he'll be breathing better as his lungs get stronger and we'll be able to stop the all night monitoring and just do the daily spot check.
We also had our first pediatrician appointment today. Ethan currently weighs 8 lb. 12.5 oz. The UNC doctors requested that he get weighed weekly, so we'll have a professional nursing company come and do that (their first visit is tomorrow), but his pediatrician also wants to get him back in the office in a week to be weighed as well. Next month at his well baby checkup, he'll get all his immunizations so we won't be taking him out in public very much until then, and probably not much after that either because we'll soon be approaching cold/flu season as the weather eventually gets cooler. We can't afford to have him get very sick prior to his next heart surgery.
Praise God for a great start to being home, it's so great to be back!
Besides understanding what it means to be a sleep-deprived parent from nightly feedings, we have the added sleeplessness of dealing with his pulse ox machine that beeps every 4-6 minutes for no reason at all, and also alarms every time his sats drop below the safe range that we've programmed. Hopefully, in a few weeks he'll be breathing better as his lungs get stronger and we'll be able to stop the all night monitoring and just do the daily spot check.
We also had our first pediatrician appointment today. Ethan currently weighs 8 lb. 12.5 oz. The UNC doctors requested that he get weighed weekly, so we'll have a professional nursing company come and do that (their first visit is tomorrow), but his pediatrician also wants to get him back in the office in a week to be weighed as well. Next month at his well baby checkup, he'll get all his immunizations so we won't be taking him out in public very much until then, and probably not much after that either because we'll soon be approaching cold/flu season as the weather eventually gets cooler. We can't afford to have him get very sick prior to his next heart surgery.
Praise God for a great start to being home, it's so great to be back!
Saturday, September 8, 2007
We're Home!
Thanks everyone for all your prayers and words of encouragement over the past 4 weeks that we've been at UNC (and even during labor and delivery). Dr. Stewart told us to plan on staying in the hospital 4-6 weeks after delivery and we're so thankful that it was only 4 weeks! God has been so gracious by answering prayer after prayer that has been lifted up during this time - including my prayers last night that he'd continue to do well off the oxygen and that we'd get to go home today or tomorrow.
Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!
At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!
For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.
Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.
We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).
Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!
At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!
For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.
Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.
We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).
Friday, September 7, 2007
Cath complete!
Well Ethan's heart cath went well! Dr. Robinson (Ethan's cardiologist that he'll continue to see on a regular basis in the future) came and talked to us while Ethan was in post-op and said that Ethan's heart looks great, the Sano shunt is working very well and is one of the best he's seen yet from a Norwood surgery! Ethan's pulmonary artery is also a great size (it can often be small) for his age. So the good news is that there's nothing wrong with his heart at this time that would warrant needing to go back in for more surgery at this time. We were encouraged and surprised to hear that the medical team had him completely off oxygen (by accident) during the cath procedure and his sats stayed in the upper 70's-low 80's!
Ethan's still sleeping right now, the anesthesia still hasn't worn off so they have put him on .25ml of oxygen while he sleeps, then Dr. Robinson wants to try to have him start being weaned off the oxygen again. Whenever we do go home, we will probably still have an oxygen tank at home with us in case we still need it. One new thing we learned from Dr. Robinson is that all babies tend to have higher pressure in their lungs the first 6-8 weeks after birth, which limits the amount of blood flow to the lungs, but that pressure should decrease by about that time. Since Ethan will only be 4 weeks old tomorrow, he's been ahead of the game with the rest of his recovery so we just need to give him some more time to let that pressure decrease as he gets older and with the HLHS, it just might take him a little longer.
Continue to pray for patience for us and the doctors as we wean him off the oxygen. Pray that his sats would be able to remain in the 70-85% range, and that we can get home soon with him, whether or not we have to keep him on oxygen. We already have a portable tank here in his CICC room, as well as a large tank waiting for us at home in case we need it. Also, praise God that Ethan's off his NG tube and eating well. He's averaging 5 minutes feeding time to finish his entire 60-70cc bottle (which is just over 2 oz.), instead of the 15-20 minutes it's taken him the first 3 weeks of life. God has been so good to us through this journey - in the doctors rounds this morning, our speech therapist overheard the docs saying that they're very encouraged that Ethan's eating like a champ!
Ethan's still sleeping right now, the anesthesia still hasn't worn off so they have put him on .25ml of oxygen while he sleeps, then Dr. Robinson wants to try to have him start being weaned off the oxygen again. Whenever we do go home, we will probably still have an oxygen tank at home with us in case we still need it. One new thing we learned from Dr. Robinson is that all babies tend to have higher pressure in their lungs the first 6-8 weeks after birth, which limits the amount of blood flow to the lungs, but that pressure should decrease by about that time. Since Ethan will only be 4 weeks old tomorrow, he's been ahead of the game with the rest of his recovery so we just need to give him some more time to let that pressure decrease as he gets older and with the HLHS, it just might take him a little longer.
Continue to pray for patience for us and the doctors as we wean him off the oxygen. Pray that his sats would be able to remain in the 70-85% range, and that we can get home soon with him, whether or not we have to keep him on oxygen. We already have a portable tank here in his CICC room, as well as a large tank waiting for us at home in case we need it. Also, praise God that Ethan's off his NG tube and eating well. He's averaging 5 minutes feeding time to finish his entire 60-70cc bottle (which is just over 2 oz.), instead of the 15-20 minutes it's taken him the first 3 weeks of life. God has been so good to us through this journey - in the doctors rounds this morning, our speech therapist overheard the docs saying that they're very encouraged that Ethan's eating like a champ!
Thursday, September 6, 2007
Thursday Night in the CICC
This morning during rounds, the Chair of Children's Cardiology spoke with me about Ethan's condition. He had a lot of good things to say. In fact, Ethan's whole team is quite pleased with many aspects of his recovery. He continues to eat like a champ. He has come a long way in that area. His heart rhythm and blood pressure continue to be in the near optimum range. Ethan has been spared many of the complications that often can lead to a very dangerous journey for HLHS babies.
One area DRs are concerned about is his oxygen saturation (we sometimes call this "sats" or "pulse ox"). Ideally, his sats should be 75-85%. Ethan's sats are in that range but only due to the assistance gained by being on oxygen. Each time we try to wean Ethan of the oxygen, his sats drop. Sometimes they go back up again. They go back up - they come down. And all the time to "safe" levels - but not levels we would want Ethan to be in all the time. When he sleeps deeply, his sats have been dipping below 70%. Again, because we are monitoring this closely, and increasing oxygen improves his sats quickly, Ethan is not in danger during these changes. That being said, Ethan should be off of oxygen by now. DRs don't know why his sats are fluctuating so much. To find out, Ethan has been having regular echocardiograms (bi-weekly at least). They've been inconclusive in regards to saturation but have reaffirmed that his heart is doing as it should be physiologically - which is great.
As an effort to learn more about his blood flow, internal pressures of heart chambers, and arteries and veins in the heart and lungs, a cardiopulmonary catheterization has been scheduled for Friday morning at 8am. There is little risk associated with the procedure. This procedure is done under local anesthesia and is performed in a special lab - not an OR. The procedure, in short, consists of threading a small tube with a pressure sensor on the end of it through his veins, heart, and arteries. Hopefully the DRs will be able to further understand the particulars of Ethan's heart, lungs, and the veins and arteries related to the two. Hopefully some light will be shed on why Ethan's sats bounce so regularly. His sats issue is the last thing that needs to be addressed and rectified before Ethan can go home.
Please pray for Ethan's safety, steady hands and clarity for all those involved in the catheterization, and that Ethan's sats would improve with no further non-medicinal intervention.
One area DRs are concerned about is his oxygen saturation (we sometimes call this "sats" or "pulse ox"). Ideally, his sats should be 75-85%. Ethan's sats are in that range but only due to the assistance gained by being on oxygen. Each time we try to wean Ethan of the oxygen, his sats drop. Sometimes they go back up again. They go back up - they come down. And all the time to "safe" levels - but not levels we would want Ethan to be in all the time. When he sleeps deeply, his sats have been dipping below 70%. Again, because we are monitoring this closely, and increasing oxygen improves his sats quickly, Ethan is not in danger during these changes. That being said, Ethan should be off of oxygen by now. DRs don't know why his sats are fluctuating so much. To find out, Ethan has been having regular echocardiograms (bi-weekly at least). They've been inconclusive in regards to saturation but have reaffirmed that his heart is doing as it should be physiologically - which is great.
As an effort to learn more about his blood flow, internal pressures of heart chambers, and arteries and veins in the heart and lungs, a cardiopulmonary catheterization has been scheduled for Friday morning at 8am. There is little risk associated with the procedure. This procedure is done under local anesthesia and is performed in a special lab - not an OR. The procedure, in short, consists of threading a small tube with a pressure sensor on the end of it through his veins, heart, and arteries. Hopefully the DRs will be able to further understand the particulars of Ethan's heart, lungs, and the veins and arteries related to the two. Hopefully some light will be shed on why Ethan's sats bounce so regularly. His sats issue is the last thing that needs to be addressed and rectified before Ethan can go home.
Please pray for Ethan's safety, steady hands and clarity for all those involved in the catheterization, and that Ethan's sats would improve with no further non-medicinal intervention.
Wednesday, September 5, 2007
Wednesday afternoon
Well we're still trying to figure out Ethan's oxygen saturations. He still sats in the 60s when he's asleep so he has to be on a higher oxygen concentration, but then when he's awake (and especially when he's eating) his sats are in the upper 70s to low 80s so the nurses have to turn the oxygen back down to almost nothing. A big oxygen tank and a portable oxygen tank have been ordered for us to use whenever we go home, if he's still needing it by then. If we do have to go home with oxygen, he'll have to be on it 24hrs/day. The doctors don't usually send HLHS babies who've had the Norwood (first surgery) home on oxygen but since this is really his biggest issue, they're considering doing it since he's on so little oxygen most of the time (.1-.4 ml/hr).
So as stated in yesterday's blog, oxygen sats are the biggest prayer request at this time. As much as we still long to be home as a family, we are waiting on God's timing to make sure that Ethan's body is strong enough and getting enough oxygen before we go home. Becoming a new parent is challenging enough without the added tasks of all the medical equipment we'll be taking home - pulse oximiter (to measure oxygne sats), NG feeding tube and pump (to supplement his feeds if he can't take his whole 2oz. (60-65cc) bottle, and now an oxygen tank.
So as stated in yesterday's blog, oxygen sats are the biggest prayer request at this time. As much as we still long to be home as a family, we are waiting on God's timing to make sure that Ethan's body is strong enough and getting enough oxygen before we go home. Becoming a new parent is challenging enough without the added tasks of all the medical equipment we'll be taking home - pulse oximiter (to measure oxygne sats), NG feeding tube and pump (to supplement his feeds if he can't take his whole 2oz. (60-65cc) bottle, and now an oxygen tank.
Tuesday, September 4, 2007
Still at UNC...
Well it's Tuesday morning and Ethan had to have his Lasix med (a diuretic) upped to twice a day instead of once a day. This is because his doctors think there might be a little fluid around the lungs, which is causing his oxygen saturation to be lower than when he was in the PICU last week. We'll see how he does with the extra dose of Lasix, and if that's what does the trick, then maybe we'll get out of here by the end of the week.
Dan learned how to change the NG tube this morning, and he also changed his first poopy diaper over the weekend, so we're slowly going down the checklist of things we need to do in order to get out of here! Also, Ethan's in the process of having his newborn hearing test that all babies have to have before being discharged from the hospital. The hearing test is now done and the tech said he passed the hearing test for both ears!
Thanks for your prayers for his feeding. He's been very consistent with his feeds, mostly being able to take the entire 65cc bottle at each feeding. He only had one feeding over night where he was too sleepy to take the whole bottle and had to have about 20 cc's given by NG tube. Hopefully, by the time we go home he won't need the NG tube either.
Prayer Request for the Day:
Please continue to pray that Ethan can get weaned off his oxygen (he's only at .2mL/hr which is barely anything at all, but he's been at that same place for the past 24 hours now), that's the one thing holding us back from going home right now. The nurse just said that he's sound asleep and his oxygen sats just dipped even more so she's turning him up to .3ml/hr. This is not the right direction for getting out of here, but at least he's in good hands here. We'd rather be here a little longer and get his sats right, then to go home and have him turn blue from lack of oxygen and have to rush back over here.
Dan learned how to change the NG tube this morning, and he also changed his first poopy diaper over the weekend, so we're slowly going down the checklist of things we need to do in order to get out of here! Also, Ethan's in the process of having his newborn hearing test that all babies have to have before being discharged from the hospital. The hearing test is now done and the tech said he passed the hearing test for both ears!
Thanks for your prayers for his feeding. He's been very consistent with his feeds, mostly being able to take the entire 65cc bottle at each feeding. He only had one feeding over night where he was too sleepy to take the whole bottle and had to have about 20 cc's given by NG tube. Hopefully, by the time we go home he won't need the NG tube either.
Prayer Request for the Day:
Please continue to pray that Ethan can get weaned off his oxygen (he's only at .2mL/hr which is barely anything at all, but he's been at that same place for the past 24 hours now), that's the one thing holding us back from going home right now. The nurse just said that he's sound asleep and his oxygen sats just dipped even more so she's turning him up to .3ml/hr. This is not the right direction for getting out of here, but at least he's in good hands here. We'd rather be here a little longer and get his sats right, then to go home and have him turn blue from lack of oxygen and have to rush back over here.
Sunday, September 2, 2007
parent training
Yesterday (Saturday) was a long, busy day of parent/nurse training here at UNC. So busy in fact that we didn't even have time to go see Carolina's first game victory of the season (GO HEELS!!! what a great start to the season!) .
We got to mix all his thickened bottle feeds yesterday, as well as getting to actually feed him. Friday he did very well and took all his bottles without need of the NG tube. All the excitement must have worn him out because he was only able to take about half of each bottle and had to be fed the rest through NG tube. Speaking of the NG tube, I (Julie) got trained on placing the NG tube down his throat so that I'll know how to do it when we get home in case he still needs it. Today, it's Dan's turn to learn how to place the tube. Ethan also was put back on a little oxygen on Saturday, not because his pulse ox was lower, but just because the doctors wanted him to have it for one more day. Also, we learned yesterday that Ethan has a little reflux so he's on one more medication - Prevacid - that he'll have to have once a day.
Also, with tomorrow being a holiday, it looks like we may not get out of here until closer to Tuesday now instead of today or tomorrow. But that's ok, because we'd rather be here where he can be watched closely one more day by the hospital staff, than to be home on a holiday when not many places are open.
Thanks for continuing to keep us in your prayers, the light at the end of the tunnel is getting brighter each day. Not long now until we're all back home where we belong!
We got to mix all his thickened bottle feeds yesterday, as well as getting to actually feed him. Friday he did very well and took all his bottles without need of the NG tube. All the excitement must have worn him out because he was only able to take about half of each bottle and had to be fed the rest through NG tube. Speaking of the NG tube, I (Julie) got trained on placing the NG tube down his throat so that I'll know how to do it when we get home in case he still needs it. Today, it's Dan's turn to learn how to place the tube. Ethan also was put back on a little oxygen on Saturday, not because his pulse ox was lower, but just because the doctors wanted him to have it for one more day. Also, we learned yesterday that Ethan has a little reflux so he's on one more medication - Prevacid - that he'll have to have once a day.
Also, with tomorrow being a holiday, it looks like we may not get out of here until closer to Tuesday now instead of today or tomorrow. But that's ok, because we'd rather be here where he can be watched closely one more day by the hospital staff, than to be home on a holiday when not many places are open.
Thanks for continuing to keep us in your prayers, the light at the end of the tunnel is getting brighter each day. Not long now until we're all back home where we belong!
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