Cardiologist Follow Up Appointment

Well, today makes 4 weeks from the day Ethan had his Extra-cardiac Fontan surgery. Before we were discharged from UNC Children's Hospital, the cardiology team scheduled us a follow up appointment at the Raleigh Clinic (Wake Med's Heart Center). This is where we normally go for all our cardiology appointments (a 15 minute drive is much better than a 1 hour drive!).

Today at the checkup, we did all the usual stuff - took Ethan's vitals (good blood pressure, 96% pulse ox), weighed him (17.0 kg/37.5lbs), measured his height (41.5in/105.41cm), Dr. R listened to Ethan's heart with the stethoscope, had an echo (ultrasound of the heart), and also added an EKG. Everything looked great according to their standards! Dr. R decided to start weaning the main diuretic (Furosemide/Lasix) to once a day instead of twice a day, still 2.5mL dosage. We're able to completely drop the other diuretic (Spironolactone/Aldactone)! In one week, we'll be able to stop the Lasix all together so Ethan will then be back to no meds!!!! This is fabulous news - especially considering the fact that pre-surgery, we were told by the surgeon to expect to be on baby aspirin indefinitely. Also, in the PICU, Dr. R said we'd probably start Enalapril (an ACE inhibitor to treat high blood pressure) indefinitely but apparently that's not needed any more either!!!!

We also got great news to find out that we don't go back for a cardiology checkup for an entire year! What a relief to know that Dr. R thinks he's in good enough shape to go that long between visits! We're used to seeing him every 3-6 months. 

Praise the Lord for taking care of our sweet boy and helping his recovery go so smoothly! Now it's time to get back to our new normal life, just in time to await the arrival of Ethan's little brother, due in only 5 weeks. Poor baby brother still has no name but we're working on it :)

In the meantime, Ethan's enjoying running around without getting out of breath and tiring out easily. This poor momma is the one trying to keep up with him these days! Our next family goal between now and Nov. 2 is to work on getting Ethan potty-trained. He did a great job on Tuesday, wearing underwear all day long and taking himself to the potty each time he needs to go. He was a little late and had an accident each time but at least he realized what was happening and could stop himself and finish in the bathroom! Baby steps! Maybe this Lasix is paying off after all!

Day 10

Ethan had a pretty good night, slept most of the way through the 6:30am blood draw, only to wake as they were finishing pulling the needle out! This was an instant answer to a prayer I said as soon as the lab tech walked into the room. He suffered enough with the 3 pokes to start the new IV that I just couldn't bare to see him wake up to pain this morning. We've been awake ever since but are in good spirits today.

The cardiologist today came & talked to me after rounding this morning. He said that yesterday's X-ray looked good so he was going to do another today to make sure everything is still looking good after decreasing the Lasix yesterday. If that looks good, they will switch the Lasix from IV to oral this afternoon!

Dan came over around 10am & he came on the walk down to the X-ray lab with us. It'll be nice to have him here for the day!

Also on schedule for today, they decreased his oxygen to .1L (the lowest possible!) & if he can keep his pulse ox sats at 92 or above until this afternoon, then they'll get rid of the oxygen! Ideally, I'd love for that to happen before we go up to the playroom but I don't want to rush it & have to go back on it (or even worse, have to up the amount of o2).

Day 9 - finally over!

First of all, forgive me if any of this is repeat of my earlier post. Without having a computer the whole time we've been here, all these updates have been typed slowly from my phone & it's not easy to go back & check to see where I left off in my last posting. Plus, 9 days of very little sleep, combined with "pregnancy brain" makes for poor memory!

The morning & afternoon were pretty good. Ethan's managed to stay at .2L of oxygen all day with sats in mid-upper 90s! Hopefully they'll drop him to .1L or nothing at all tomorrow but haven't heard anything official on that yet.

Ethan had another chest X-ray this morning so we didn't make it to the morning playroom time but he walked the whole way there & back, which counted for our first walk of the day.

Then, after rest time & lunch, we were visited by the clowns again, as well as some UNC football players. Since the football guys were not in uniform, Ethan wasn't really impressed to meet them. Wish I had thought to get a picture of them with Ethan but didn't think about it until they were already gone.

Next, we took out second walk to the playroom & stayed the entire 2 hours it was open. There was only one other kid there so it was nice & quiet & we had time to check out all the different toys available! We mainly stuck to playing with cars & tools.

About an hour after we got back from the playroom, it was time for Ethan's afternoon dose of IV Lasix. As his nurse started to clean & flush the line, she determined it had blown so she had to remove it & place a new line. This was by far the hardest hour of the 9 days we've been here. :( They've always struggled to get IV's & blood draws done on his little veins & today was no exception. It took 2 nurses, 3 tries & a total of 1 whole hour of blood-curdling screaming & crying before they finally got a new line placed in his left  foot (same foot as the line he blew yesterday). I'll confess I even shed a few tears as I held his hand & tried my best to distract him & help hold him still. The crazy part of it all is that they are about done with the IV Lasix & want/need to start transitioning him to oral probably as soon as tomorrow (Saturday).

After all of that ordeal, he fell asleep & slept for 2 hours. That gave me a little time to rest & recover before Dan showed up. He stayed asleep long enough to also allow us time to slip off to the cafe for dinner together. Shortly after we returned, he woke up & we spent some time together as a family just resting & watching some TV before Dan went back to the RMH to sleep. We never made it back out of the room for Ethan's 3rd walk of the day but I think that's fine because the nurses said he got plenty of respiratory therapy by crying for an hour straight :(

Well, this post has taken me so long to compose that it's officially the next day now so I better try to get some sleep.

In all my focus on keeping you all updated on Ethan, I think I've neglected to share a personal prayer request of my own. For the most part, I've really enjoyed being pregnant & am extremely thankful to have pretty easy pregnancies, buy this time, the 2nd half of this pregnancy, I've been having some pelvic floor pain. Up until Ethan's surgery, it's been fairly manageable, but recently it's really started to affect my sleep. It's become impossible to lay down to sleep so I have to sleep sitting in a chair or couch, which is not comfortable at all here at the hospital. There are no chairs in our room at the RMH so that's the main reason I've been spending most nights here at the hospital instead of trading off with Dan. So that's one more reason we can't wait to get back home! I did finally call my OB doc today to ask for additional pain relief ideas b/c none of the ideas she mentioned at my last visit have helped so she said the next step is to be referred to a chiropractor. As soon as we figure out when we'll be getting out of here, I'll call & book that appointment.

Thanks, as always, for taking the time to read our blog & continue praying for us. Also, thanks for the comments & words of encouragement. Even though we don' t personally respond to them, please know we read & appreciate rach one. You are speaking my love language by posting them!

Day 9 mid-day update

Today started out rough again with a 6am blood draw - poor Ethan screamed & screamed that it hurt & that the lights were too bright & that he just wanted to go back to sleep. It's hard to see him be in pain & not be able to help him - that's definitely starting to get old for me.  Speaking of pain, he hasn't complained of any in several days, other than saying it hurts his throat to cough.

The blood lab showed he was still a little low on potassium still so we tried hiding it in a glass of sweet tea but that still didn't work.

In rounds this morning, today's cardiologist seems a little more aggressive with treatment (in a good way)! He was surprised Ethan's still on nearly max dosage of Lasix so he nearly cut it in half, still by IV today, but only every 12 hours instead of every 8. This should also help with the potassium issue :)

Also for today, he wants to start weaning the oxygen so we can get out of here sooner rather than later. We're also supposed to continue working on keeping Ethan active & do more breathing therapy to help expand lung volume & decrease fluid. Ethan's down to .2L since about 9am & has been doing great so far with says staying above 92!

Ethan walked all the way to the elevator, rode it down from the 5th floor to the basement, walked down the hall to have his chest X-ray, then walked all the way back to his room without tiring out (about 30 min total) which is huge for him for being only 8 days post-op! We are quite a site walking through the halls pulling our wagon loaded down with a portable oxygen tank, monitor & all the wires & oxygen cannula. It really slows us down but Ethan's being very patient & cooperative.

Time for lunch, rest time, then up to the playroom at 2! Will update again later. Thanks for all your continued prayers!

Day 3 - post-op

Ethan had a pretty good night last night! We were only up once last night from 2-3:30am. He held his O2 sats in the mid90s. For the other 2 surgeries, sometimes his O2 would dip lower while he was asleep so this is a huge improvement & welcome change!

Pray for more improvement today in the area of drinking/ eating. They still have him on clear liquids for the morning & supplementing with IV fluids. We hope to drop the IV & start on solid food later today.

Also pray for bravery for Ethan because they want him to sit up more & even stand/walk - both of which he's scared will hurt.

We also think he will get his middle chest tube out which should help his discomfort & fear of sitting/standing.

Finally, pray that he's doing well enough to move out of ICU & up to the cardiac floor. That partly depends on how well he can eat/drink/move around but also is hugely dependent on there being a room available for us.

Doctors are doing their rounds this hour & we have some family coming to visit this morning so we probably won't have another update until noon or so.

Cardiologist Appointment

Yesterday was our quarterly cardiologist checkup. Despite the drought we've been in for over a year now, it never fails to rain the day we go to see Ethan's cardiologist and yesterday was no exception! Fortunately Ethan didn't seem to mind the cold drizzly rain as we walked from the car, through the parking lot, and into WakeMed's Heart Center. Ethan usually doesn't mind going for his cardiology checkups and behaves very well but yesterday he was just as fussy as he could be! Dr. Robinson said that all his patients were fussy yesterday and we thought it might've been the weather.

Ethan's fussiness began the second I put him on the exam table and undressed him and had to make him lay down so the nurse could measure his length. He calmed down for a few minutes while we went to the next room over to get weighed but then started fussing again when I had to hold him while the nurse measured his pulse ox. He was so wiggly that we weren't getting a very good reading at first - hovering around 76% but then I started singing his favorite song, "If You're Happy And You Know It" and he calmed down and we were able to get his normal pulse ox reading of 82%. Next, Dr. Robinson tried to listen to his heart and lungs with his stethoscope but Ethan was crying again so much that it was hard to get a good listen. From what he did hear, Dr. R did say everything sounded good and he wanted to get an echo done if Ethan would cooperate.

The echo technician was very sweet and patient with us. Usually this is Ethan's favorite part of the visit and he stays very still but he's at the age now where he doesn't like to stay on his back very long - he'd rather be sitting up playing or crawling around. The tech even brought in a TV/VCR for Ethan to watch an Elmo movie but that didn't last very long and he was squirmy and fussing again. We must've have a pretty skilled tech to do Ethan's echo because even with him not cooperating, she was still able to get a few clear pictures of his heart. The RV (Right Ventricle) function looks great with no leakage. Unfortunately they didn't really get a good look at anything else like the aortic valve or the pulmonary arteries (the ones that were worked on during the 2nd surgery) but Dr. R was confident enough with what he did see that he doesn't need to see us back for another 4 months - the end of January!

Thanks as always for checking in on us and continuing to keep us in your thoughts and prayers. We are so thankful for all the support but more importantly for the good health that God has blessed Ethan with over the last year. Please continue to also keep baby Gracie in your prayers as her parents patiently wait for her 2nd surgery next Thursday and also baby Lindsay is having her heart cath today in preparation for her 2nd surgery probably next week as well.

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!

Heart Cath completed

We're finished with the heart cath! The procedure went exactly as planned - we got to UNC early Tuesday morning (7:30am), checked in with Registration, went to the Cath Lab around 8:15am, the procedure began around 8:30am and ended at 11:00am. Ethan was under oral anesthesia and woke up pretty soon after the procedure was over. After the cath, Dr. Robinson (Ethan's cardiologist that we see every month) decided to go ahead and do Ethan's monthly echo. The advantage to doing it while we were in post-op is that they were able to give him a little more anesthesia (this time through his IV) to put him back to sleep for the echo. The sonographer said he felt spoiled getting to do the echo on a baby that's sleeping because he could get a good, clear picture without Ethan squirming around!

We are so thankful that the cath went well. Recovery did not go quite as smoothly though. After the cath, the nurses and Dr. Robinson had a hard time finding a good, strong pulse in Ethan's right leg (the one that had the cath) so by about 3:30pm, they decided to admit him just for the night for observation. They put him on a blood thinner to make sure he didn't have or get a clot and we just sat by his side the rest of the afternoon and evening, waiting for a bed. Finally around 8:30pm, a bed opened up on the CICC floor - it just happened to be the same room that we had last time we were here! I (Julie) ended up spending the night with Ethan and Dan came back home to get some sleep and take care of our dog.

Ethan's heart is looking good so we're still on track for surgery at the beginning of January. This is good news to hear that he's still a candidate but it's also kind of make us nervous that it's only a month away! Dr. Robinson said that Ethan hasn't outgrown his shunt yet, and he's gaining weight at a good rate so we're fortunate that this 2nd surgery is "elective" as far as the timing is concerned. This is ideally how it's supposed to be done. The surgeons prefer to have the flexibility to operate on heart babies at the parents' convenience instead of getting to a life-threatening time crunch - praise the Lord! We should hear back from UNC within the next week with the surgery date. And if that's not good for us, we can reschedule. We also have to make sure Ethan's not sick at the time of surgery, so if it get's to be about a week before surgery and we find that Ethan's got a cold or something like that, we still have the flexibility to reschedule!

Wednesday morning, Ethan's nurse found a pulse in his leg and Dr. Robinson confirmed it during morning rounds (about 8:30am) so he said we could be discharged. Well apparently, several patients on the floor were also being discharged because we were told we should be out no later than 11:30am but it took until nearly 2pm to get the discharge papers drawn up so we could leave! We were all exhausted when we got home and we all got a good night sleep (9 hours!) last night.

November Cardiologist Checkup

Well it's hard to believe a whole month has passed since our last monthly checkup at the cardiologist office! Ethan still seems to be doing well. They did another echocardiogram (ultrasound of his heart function) and from what they could see, the right ventricle (RV) functions looks good and there's minimal leakage from the tricuspid valve (same as it's always been). Ethan's oxygen sats have been remaining in the 70's - low 80's (although we could only get the sat to read 58-62 at the office today but that's because they're machine is about worn out so they're going to order a new one) and he now weighs 6.0 kg (13 lb. 3.5 oz.) so Dr. Robinson is pleased with his growth and heart function.

Dr. Robinson also told us we can stop one of the heart meds - Digoxin once we run out (which we ran out last night!) and we can also stop the Lasix (diuretic). So we're just down to one heart med - Enalapril (2x/day) and baby aspirin (3x/week)! He also told us that it's time to start the ball rolling to get ready for the next heart surgery. The 2nd surgery usually takes place between 4-8 months old, based on the oxygen sats and Ethan's weight gain. He's right on track for both for now but we don't want to get caught off guard when the sats start to drop so we're going to go ahead and book the heart catheritization for December and plan on having the second surgery a few weeks later (sometime in January).

Now that we know a timeline for the 2nd surgery, and we're getting ready to head into cold/flu season, we have to be extra cautious about keeping Ethan healthy. He needs to be healthy for at least 2-4 weeks prior to the surgery so that there's less risk of infection so we will keep him isolated from the public as much as possible from now until his next surgery. We should hear back from Dr. Robinson's office before Thanksgiving for the date of the heart cath and we'll let you know the date so you can be praying. If you've been following us since Ethan's birth, you may remember that he had a heart cath the day before we got discharged, so at least we know a little bit about what to expect. He will be anesthetized and will probably be sleepy the rest of the day, but it will probably be an outpatient procedure if all goes well.

Thanks for your continued prayers! Also, we want to thank UNC Hospitals for all the great work and personal care and attention they have given us. Today is the NC Children's Promise Telethon/Radiothon to raise money for the UNC Children's Hospital where Ethan spent the first 4 weeks of his life and we want to thank everyone involved in donating today to help make the this Children's Hospital what it is. We are so blessed to live so close to such a fabulous facility! If there are any causes worth donating to this year, this radiothon would be my pick - just to be able to give back to the place that saved our sweet boy's life! Please consider donating if you have money to spare - even a few dollars will make a difference for them. http://www.ncchildrenspromise.org/radiothon.shtml or 1-866-9-NC-KIDS.

Cardiologist Checkup

All went well at the cardiologist today. Nothing too eventful to report. Dr. Robinson was pleased that Ethan's growing so well and that his oxygen sats are around 73-83%. With those sats, we didn't even need to have an echocardiogram done this time! Ethan has outgrown 2 of his medication doses so we were told to add .1 mL to keep up with his weight. We go back to see Dr. Robinson at WakeMed in Raleigh again on Nov. 15th. At that time, we'll start looking at when to schedule the 2nd stage of surgery (it probably won't be before Christmas!), based on Ethan's oxygen sats and his current weight. We'll know it's getting close to time to do the next surgery once his sats are steadily staying in the mid 60's to low 70's.

As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.

This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!

Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.

2 months old!

Hard to believe our little boy is 2 months old today! So much has happened in his life since he was born! Yesterday, we went to the pediatrician for his weekly weight check - he's now 11lb. 4 1/4oz. (5.13kg). That's only 5 oz. gained this week, as opposed to 9 oz. gained last week, but Nurse Kay at UNC said it's ok. His pulse ox this week has been between 73-81%, so it's slightly improved from last week. We also ordered a digital scale from ebay, that should be arriving in the next week or two, so hopefully we won't have to go weekly to the pediatrician for his weigh in any more. Also, with the home scale, we won't have to have a home nurse come weigh him - which was our other option, but our current home nurse doesn't have a digital scale (which UNC requires for the weekly weigh in) and no other home nurse company has a digital scale either, so home nursing is out of the question at this time (plus it was going to cost $102.95/visit).

Tomorrow morning at 8:30am we go back to UNC for another swallow study. Last swallow study was done about 6 weeks ago, and at that time, it was taking him 20 minutes to drink a 2 oz. bottle, and it was only the last couple of minutes where he started falling asleep when he was silently aspirating (swallowing the wrong way and not coughing). Well it only takes him 5 minutes to take a 3 oz. bottle now and he doesn't get tired or fall asleep so we think he's ok. He has the ability to cough, and it's rarely when he's eating so we think he's ok. If he passes, then we can take him off the thickened feeds and hopefully I'll be able to nurse him more often! Right now, I'm only allowed to nurse him once a day, and when he does nurse, he latches on right away and does great, although he falls asleep after about 10 minutes.

So today's prayer request is that the x-ray swallow study goes well tomorrow morning. Also, next week, we've got 2 appointments - next Wednesday after his weigh in, he'll have his 2 month checkup and also get his immunizations. Then next Thursday, we go back to WakeMed to see his cardiologist for his monthly heart checkup.

And, as promised, I finally have some new pictures of Ethan for your viewing pleasure! P.S. we'd love to hear from you. Please click on the comment link at the bottom of each blog entry to post a comment on our site!

Mommy & baby Ethan

Well I thought I could get more than one picture posted but I guess not. I'll try to post more later today.

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!

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.

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!

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).

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!

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.

Planning to visit Ethan at UNC on Tuesday?.....

...CANCEL YOUR TRIP! Ethan is going home to be in his natural habitat! Gray-C is ready. Mom and Dad are DEFINATELY ready! DRs say Ethan should be ready to go home on Sunday or Monday. He might go home with an NG feeding tube that goes down his little nose into his throat, all the way to his stomach. We've got a little machine to measure the oxygenation of his blood once a day. All in all, we are so used to being around this type of medical equipment, it shouldn't be a very big deal. He'll be on 3 medicines - all taken by mouth. He is currently off his oxygen... we tried to take him off it before and he wasn't quite ready. He's been off it for 6.5 hours and his stats are still good so he might stay off it this time. Thanks for your prayers, thoughts, emails, and letters. They have made these 23 days much easier to deal with and have given us supernatural peace.