Cardiologist Appointment

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

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

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

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

more 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.

last RSV shot!

I nearly forgot about the appointment until about 30 minutes beforehand, but we did make it to the peds for Ethan's last RSV shot of the season! We won't have to do this again until October or November so that will be a nice break! Ethan's weight is looking good, he weighed in at 18lb. 11 1/4 oz. (8.5 kg) today so I'm pleased!

As always, thanks for checking in on us. Things are going so well that we haven't had too much to report lately. We praise God for Ethan's continued good health and continue to pray for comfort and strength for baby Annabelle's family as they grieve her loss. We also ask for prayer for baby Julianne as she goes for her swallow study tomorrow. She's been on a feeding tube her entire life and if she doesn't pass, then the doctors are talking about surgically placing a G-tube button on her stomach for feeding so she doesn't have to have a tube down her nose any more. Please pray God's will to be accomplished for her tomorrow. I know her parents desperately want her to pass but, more importantly, are trusting God for whatever the outcome!

7 months old!

"They grow up so fast" is the phrase everyone says about kids, and boy is it true! I was even told this phrase yesterday as I was leaving the pediatrician office by a lady leaving the same time as me (no kids with her), she opened the office door for me as I carried Ethan out to the car. It's hard to believe that Ethan is officially 7 months old today! So much has happened, yet it still seems like just yesterday that I first held him in my arms.

Today also makes 7 weeks since Ethan's 2nd heart surgery - the Glenn. One more week and we can pick him up under the arms (not like I'm counting down or anything!). After visiting the pediatrician and hearing Ethan now weighs over 18 pounds, no wonder why I feel like I'm getting a workout by holding him and picking him up so much every day! We still have our home scale that we used to use for weekly weigh-ins but since we don't have to do it anymore, we have boxed it up and it's not worth getting back out so I was curious to see how much weight he'd gained since his 6 month checkup.

By the way, speaking of picking Ethan up so much, Dan hurt his arm/elbow about a week and a half ago from falling off his road bike and hasn't been able to pick him up very much. Dan doesn't think his arm is broken so he hasn't gone to the doctor yet, and it started feeling better towards the end of last week, but now it's hurting pretty bad again so he hopes to see the doctor about it today. You can keep him in your prayers that his arm gets better soon so he can have full use of it again (and get to hold Ethan more - he misses that!)

Final RSV shot!

Today I took Ethan in to his pediatrician for his final RSV shot for this season...hopefully - the nurse said no more doses should be shipped to them, but that they'd call us if another dose arrives next month. We won't have to get those again until October! The nurse weighed him at 18lb. 2 3/4 oz. (8.23kg) so he seems to be growing well! The doctor made a comment to Ethan about how big he's growing and Ethan burst into tears - and he hadn't even received his shot yet - poor kid, LOL!

We go back to the cardiologist next Thursday, 3-20 for another followup. Hopefully we'll get approved to take Ethan off his one and only medicine - Lasix (diuretic) that helps drain off any extra fluids in his body from his 2nd heart surgery. Also by that time, we'll be able to start picking Ethan up under his arms once again, so we will finally be able to feel like things are back to normal as they felt right before his surgery. We continue to feel so blessed at how much God has taken care of Ethan and us during the past year since we first found out about Ethan's heart condition! Thank you all for your continued prayers and support to help us along on our journey!

Cardiologist checkup

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

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

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

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

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.

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.

Weekly weight check

Well it's Wednesday, which means it's the day to weigh Ethan on our home scale and call it into his cardiologist's office. He weighed in at 13 lb. 14 oz. (6.30 kg), so that's a gain of 9 oz (.27 kg) from last week! I'm glad to see he's still gaining weight, despite only eating half as much since last week and having spit up several times yesterday and over the weekend.

Well Ethan just woke up from his nap screaming so I've got to run. Dan's upstairs already asleep and trying to rest his hurt foot so it's all up to me tonight. We probably won't post again until the heart cath next Tuesday, 12/4 so just keep us in your prayers that the procedure goes according to plan.