Well it seems that it is indeed a stomach bug that Ethan caught and now he's passed it on to me and Dan as well. :-( Good news is that Ethan seems to be feeling better today, and so do I so hopefully it was just a 24 hour thing for me. Dan's still asleep so I don't know how he's feeling, but he had a rough night last night. Please pray that this passes quickly from our family so we can get back to trying to get Ethan back on schedule after surgery. Our discharge papers and other friends with HLHS babies have all said it often takes a few weeks to get back on schedule with feeding, sleeping and playing after this 2nd surgery.
Tomorrow morning Ethan goes back to the pediatrician to get his chest tube sutures removed, so we're excited about that! One more step towards his healing from the surgery! And next week we go for a checkup with Ethan's cardiologist to have an echo to make sure his heart is still functioning well from the surgery.
Tomorrow is also the day for baby girl Annabelle Butcher (http://www.babygirlbutcher.blogspot.com/) to have her first heart surgery for HLHS, so please be keeping her and her family and medical team in your prayers. Thanks!
Thursday, January 31, 2008
Tuesday, January 29, 2008
Better night
We made it over 24 hours without Ethan throwing up! As mentioned in my last post, Ethan was on Pedialyte most of the day yesterday and he managed to keep it all down! So at his normal 7pm feeding time, I tried giving him 2oz. of formula and he seemed to do fine and want more, so I gave him 2 more. He did fine with that too so I fed him another 4 oz. bottle at 10pm and put him to bed. He managed to keep that down all night and I fed him again around 6:50am and he kept that down too! But at his 10am feeding, he took 3 oz. then threw it all up. :-(
Also, I think he had some bad dreams and/or may have been in a little pain last night because he woke up every single hour from 1:30am-8am. You could seriously set a clock to it! Every time I'd go check on him, he looked like he was asleep but he'd just be screaming. So I would give him his pacifier, rub his tummy and side, tell him everything was ok and that he's home now and he'd fall right back asleep and repeat the screaming an hour later. At 3:30am, I gave him some tylenol in case he was in any pain. But I don't think that was the problem because he seemed fine all day yesterday.
The nurses warned us in our discharge papers that it's not uncommon for peds cardiology patients to have frequent nightmares once we're home, but I don't remember him having them last time we came home - maybe it's just because he's older and a little more aware of things now. Hopefully tonight we'll all sleep better! Thanks for keeping us in your thoughts and prayers!
Also, I think he had some bad dreams and/or may have been in a little pain last night because he woke up every single hour from 1:30am-8am. You could seriously set a clock to it! Every time I'd go check on him, he looked like he was asleep but he'd just be screaming. So I would give him his pacifier, rub his tummy and side, tell him everything was ok and that he's home now and he'd fall right back asleep and repeat the screaming an hour later. At 3:30am, I gave him some tylenol in case he was in any pain. But I don't think that was the problem because he seemed fine all day yesterday.
The nurses warned us in our discharge papers that it's not uncommon for peds cardiology patients to have frequent nightmares once we're home, but I don't remember him having them last time we came home - maybe it's just because he's older and a little more aware of things now. Hopefully tonight we'll all sleep better! Thanks for keeping us in your thoughts and prayers!
Monday, January 28, 2008
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.
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.
Saturday, January 26, 2008
We're Home at Last!
We slept in this morning at Ronald McDonald House (RMH), had brunch there, then called Ethan's floor to check on him around 10:30am. His nurse said he did great all night long - with feeding and with his weaning off oxygen. He was completely off when we called, but still had the cannula tubing across his face, just in case. We got to the hospital around 11am and about an hour later his nurse got brave and took off the cannula and continued to monitor his oxygen sats. He managed to stay in upper 80's! Then the doctor came by and said Ethan was looking so great, that he felt comfortable discharging us if we felt comfortable taking him home! So it took a while to get discharge papers printed and we finally got out of there at 5:30pm.
We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!
Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.
Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).
Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.
We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!
Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.
Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).
Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.
Friday, January 25, 2008
Still on oxygen
Ethan wasn't doing well off oxygen - his sats dropped from the mid 80's to mid 60's almost right away so he's been back on .2 of oxygen since my last post this morning. He has to consistently be in the mid 70's-mid 80's in order for them to let us go home.
Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.
Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!
Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.
Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!
More progress
Since we're so blessed that Ethan's doing so well, Dan has decided to go in to work today. I got to the hospital this morning and Ethan's oxygen had been moved down from .3 liters to .2, then about 30 minutes later, his nurse moved it down to .1 and they'll monitor that for a few hours. If that goes well, then she'll try taking him off oxygen and see how that goes - that's the main thing keeping us here, so be praying that goes well. It's great that he's been able to be so mobile so soon afer surgery! I may even get to take him upstairs to the playroom after lunch. There's an infant play time from 2-2:45 pm that his nurse just told me about today, so that will be fun!
Ethan just got his chest tube bandages and incision bandages removed while I was typing this post and the nurses are very pleased with how well he's healing. Then 2 cardiology residents came by and shut his oxygen off completely so they will monitor that for a couple of hours. Hopefully Ethan will take his nap and his oxygen sats will continue to look good during that time so we can get out of here soon - the residents said we may be out sometime this weekend if things continue to go this smoothly. They credit his success to how big he is, but we know all the real credit goes to our Heavenly Father for helping get him so strong and healthy leading up to this surgery.
Praises:
-Thank you Lord for the great medical staff here at UNC Hospital
-Thank you Lord for the speedy recovery this time around
-Thank you Lord for no signs of infection nor sickness while we've been here
-Thank you Lord for all the prayer requests already answered including our biggest concern about Ethan's interest in eating after being intubated/extubated
Prayer Requests:
-Pray Ethan continues to do well being off oxygen
-Patience for us if he does need to go back on a little oxygen since that's the only thing keeping us here
-Continued healing at such a speedy pace
-Pray for continued interest in eating (it's hard staying on a schedule here at the hospital with nurses coming in to check on him and update us)
Ethan just got his chest tube bandages and incision bandages removed while I was typing this post and the nurses are very pleased with how well he's healing. Then 2 cardiology residents came by and shut his oxygen off completely so they will monitor that for a couple of hours. Hopefully Ethan will take his nap and his oxygen sats will continue to look good during that time so we can get out of here soon - the residents said we may be out sometime this weekend if things continue to go this smoothly. They credit his success to how big he is, but we know all the real credit goes to our Heavenly Father for helping get him so strong and healthy leading up to this surgery.
Praises:
-Thank you Lord for the great medical staff here at UNC Hospital
-Thank you Lord for the speedy recovery this time around
-Thank you Lord for no signs of infection nor sickness while we've been here
-Thank you Lord for all the prayer requests already answered including our biggest concern about Ethan's interest in eating after being intubated/extubated
Prayer Requests:
-Pray Ethan continues to do well being off oxygen
-Patience for us if he does need to go back on a little oxygen since that's the only thing keeping us here
-Continued healing at such a speedy pace
-Pray for continued interest in eating (it's hard staying on a schedule here at the hospital with nurses coming in to check on him and update us)
Thursday, January 24, 2008
Day 2 in the CICC
Dan and I have enjoyed getting caught up on some much needed sleep, not having to get up and feed Ethan during the night! We got over here to the hospital around 10am. One of the cardiologists and his outpatient nurse were in his room, they are still saying he's doing great! He had a chest x-ray this morning and they said it looked a little better than yesterday, and it was already looking good yesterday! Praise God for what a smooth journey this has been so far, if things continue to go this well, we may be out by Monday.
The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!
Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.
The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!
Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.
Wednesday, January 23, 2008
On the CICC floor!
Well around 5:00 pm, we officially got moved upstairs to the CICC (Children's Intermediate Cardiac Care)! I never thought I'd say it's great to be back in any hospital room/floor, but this is kind of like the "celebrity" floor because the rules are so lax, plus there are full bathrooms and a fold out couch in each room, so we have the option for one of us to sleep here with Ethan if we want.
We saw both of Ethan's heart surgeons early today when we were still down in the PICU and they were both amazed at how fast Ethan's recovering! His main surgeon, Dr. Mill, told us yesterday in the debriefing that post-Glenn surgery patients usually spend 2-3 days in the PICU then 5-7 in the CICC. The main thing we "work on" is the eating, but Ethan's been doing pretty well with that, at least up until dinner time. Now that he got moved up here, he's only been interested in eating 2oz. instead his normal 4oz. I think part of it is that he's "clogged up" - he hasn't pooped since yesterday, so that's our big goal for the night - getting unclogged so he'll have a normal appetite again! LOL
We saw both of Ethan's heart surgeons early today when we were still down in the PICU and they were both amazed at how fast Ethan's recovering! His main surgeon, Dr. Mill, told us yesterday in the debriefing that post-Glenn surgery patients usually spend 2-3 days in the PICU then 5-7 in the CICC. The main thing we "work on" is the eating, but Ethan's been doing pretty well with that, at least up until dinner time. Now that he got moved up here, he's only been interested in eating 2oz. instead his normal 4oz. I think part of it is that he's "clogged up" - he hasn't pooped since yesterday, so that's our big goal for the night - getting unclogged so he'll have a normal appetite again! LOL
Wednesday Morning
We arrived at Ethan's room about 10:15 am to find him wiggling about, keeping two nurses busy. Gone were the chest tubes and his arterial line in his left arm. He's got a central line in his neck and another IV line on his foot but they are just pushing enough clear IV fluild through to keep the lines from getting clogged. We were expecting to see a NG tube for feeding him. Instead, we received report that he had already taken 2 ounces of formula via bottle. Awesome!
He is very aware and we even got some smiles from him! Julie gave him 4 more ounces from a bottle - that is a regular feeding for him. Can you believe that? He is off of morphine and started a much more mild, extended release type pain killer. It was great to see him so lucid today. He is progressing faster than expected. One of his Drs said he should move up to the CICC today. The CICC or Cardiac Intermediate Care Center is the step-down unit from the PICU or Pediatric Intensive Care Unit (where he is now).
We are so grateful for how well Ethan is doing. It is wonderful to have so much support from friends and family. Your prayers have been a priceless gift that have made all the difference in the world. Many have asked how they can help us financially. We have set up a Medical Trust Fund through the Mitchiner Law Firm to provide a vehicle to ensure Ethan's long-term heart-related health care needs are met. If you would like to give to the Ethan Miles Medical Trust, please make your checks out to Ethan Miles Medical Trust and mail to Monte & Barbara Miles, 4905 Latimer Rd., Raleigh, NC 27609. The trust is set up so that any funds received must be spent only on Ethan's medical heart-related expenses. To date, Ethan has received just over $2000 dollars to help with his bills. Thanks so much!!!
And now for some fresh pictures!
First bottle that mom got to feed me after surgery!
Another view of me being fed by mommy!
Mommy fed me at 11am and Daddy fed me again at 2pm. I'm only on 24 cal/oz, still thickened feeds, instead of 26 cal/oz like at home but I've got a healthy appetite. My 11am bottle, I took my normal 4 oz. and at 2pm I took 5 oz.!
We just got word that we've got a bed upstairs in the CICC so we should be up there within the next couple of hours! Praise the Lord for such fast recovery this time around!
Tuesday, January 22, 2008
Another Update
Ethan's ventilator has been removed! He is still asleep. Hopefully we will see his eyeballs tonight. He is still doing very well. He is only on pain medication and 2 other "heart helper" medicines that he was on with the last surgery. He only has 2 chest tubes verses 3 last time. He might get these off tomorow.
We did get into the Ronald McDonnald House which is great. We're doing the Lucy and Ricky thing (twin beds) which is MUCH better than the full size we were in for 24 days last surgery. Can't wait to sleep in them tonight after having been awake since 4:30 am!
We did get into the Ronald McDonnald House which is great. We're doing the Lucy and Ricky thing (twin beds) which is MUCH better than the full size we were in for 24 days last surgery. Can't wait to sleep in them tonight after having been awake since 4:30 am!
The Results Are In
At noon one of Ethan's surgeons came bearing good news. Ethan's surgery was a complete success! Everything went very well with no complications. They were also able to successfully increase the diameter of a section of the aortic arch which will allow his heart to maintain proper blood pressure with less work for the heart. Thanks for your thoughts and prayers! We still haven't seen him yet - hopefully in a few minutes. We'll keep you posted.
Monday, January 21, 2008
Surgery Tuesday
Well it's late and we need to be getting to bed, we've got to get up in 5.5 hours to finish packing our car to make the hour long drive to be at the hospital by 6am. We'll get checked in and Ethan will get prepped/anesthesized then surgery will begin around 8 or 8:30 am. The surgery shoud last until 12 or 1 pm. We'll post another update as soon as we here more tomorrow. In the meantime, thanks for all your prayers and support for us and Ethan!
Saturday, January 19, 2008
Some thoughts...
So far Dan and I haven't really been putting too much thought into the fact that Ethan's 2nd surgery is quickly approaching. I don't know if we've just been in denial or what. But being back at UNC yesterday really made reality set in for me. I barely slept last night, thinking how the surgery is getting so close and how it's going to be strange not getting to hold and play with Ethan as much for the next couple of weeks as I have over these past 4 months of being home with him. He has stolen my heart and competes with his dad for being the love of my life. He looks so normal and healthy and it's hard to give him up and know that my healthy looking baby will soon be cooped up in the hospital, hooked up to tubes and wires once again. I know we're doing the right thing by proceding with the surgery but it's breaking my heart (I sit here trying to see the screen through my tears as I type). I've really been making the most of every single moment with Ethan the past week and I praise God multiple times a day for every single day I've had with him so far. This journey has helped me to not take life for granted and to give all the glory to God for blessings He's given us so far. For an HLHS baby, Ethan's been very healthy and his surgeon described him yesterday as a "perfect candidate" for this surgery - he's a good size and he hasn't outgrown his shunt yet so we have a lot going for us as we go into surgery!
We also praise God for the great surgeons, doctors and nurses and feel we couldn't be at a better hospital than UNC! Dan and I are at complete peace once again that God's will be done with Ethan during surgery, it's just the recovery time that I'm not looking forward to. Please pray for us to have peace about the recovery process and that we can get home again very soon. In the meantime, we're going to do our best to enjoy these last couple of days together as a family before Tuesday morning. The forecast is for 1-3" of snow this afternoon/evening so that's a bright spot to thank God for!
We also praise God for the great surgeons, doctors and nurses and feel we couldn't be at a better hospital than UNC! Dan and I are at complete peace once again that God's will be done with Ethan during surgery, it's just the recovery time that I'm not looking forward to. Please pray for us to have peace about the recovery process and that we can get home again very soon. In the meantime, we're going to do our best to enjoy these last couple of days together as a family before Tuesday morning. The forecast is for 1-3" of snow this afternoon/evening so that's a bright spot to thank God for!
Friday, January 18, 2008
Pre-op appointment...
Well all looks well to continue as planned for surgery on Tuesday! The pre-op appointment at UNC Hospital took about 4 hours. Dan, unfortunately, had to work so it was just me and Ethan. I first met with the cardio-thoracic surgical nurse, and she drew out exactly what would be happening in the surgery. Basically, they will be removing the shunt that was placed during the first surgery and have the de-oxygenated blood coming from his head go straight to his lungs instead of traveling through his heart first. This will take a lot of work off his heart so he won't be burning calories as fast. This is will result in a quicker growth rate for Ethan and also higher oxygen saturations! For the visual learners who want to see the diagram, click here. I was encouraged by the surgeon today that he called Ethan a perfect candidate for the surgery and thinks things should go very smoothly! The surgery is only about 4 hours instead of 6 like last time so that's good too!
We'll do our best to keep everyone updated about Ethan's recovery process after surgery. Please just continue to keep us and the doctors in your prayers over the next couple of weeks! Thanks!
We'll do our best to keep everyone updated about Ethan's recovery process after surgery. Please just continue to keep us and the doctors in your prayers over the next couple of weeks! Thanks!
Thursday, January 17, 2008
Pictures!
Well I know it's been a few weeks since we posted any pictures so here's a bunch - enjoy! With pictures like these of such a healthy looking boy, it makes it all the more harder to know we've just got a few days left until we have to give him back to the hospital for his 2nd heart surgery. We go for pre-op tomorrow morning, I'll post more details in the afternoon after the appointment. Please continue to keep us in your prayers over the next couple of weeks for the surgery and a speedy recovery. Thanks!
Ethan in one of his talkative moods!
Ethan sitting up by himself on the couch!
Mid-afternoon nap time
Bright-eyed and bushy tailed!
Ethan trying sweet potatoes for the first time!
Classic baby picture - sucking thumb and holding blankie!
In a good mood!
Another happy moment!
Ethan and his first stuffed animal - his hospital buddy that we
gave him to keep him company when we were not with him.
Funny Face!
Thursday, January 10, 2008
Messy baby
So yesterday, I sat down to read the latest on baby Julianne (see link on right). Her current blog entry mentioned how they had a messy day with Julianne at their cardiologist office. Without getting too detailed, lets just say she had stuff coming out both ends and it got all over Julianne and her mom! Unfortunately, that has been the "norm" for them recently. Well we sort of had our own similar experience yesterday and today.
Poor Ethan, he just can't decide how hungry he is sometimes! We've been feeding him 6 bottles in a 24 hour period. These bottles have been only 4 oz. because they are still high-cal (26 cal/oz. as opposed to a normal formula bottle that is 20 cal/oz.) and still thickened with rice cereal to give even more calories per bottle. Well yesterday I experimented with his new bigger 9oz. bottle that I just bought. Basically I've done the math and a 4oz. 26 cal/oz. bottle is about the same as a 5 oz. bottle of 20 cal/oz. I tried giving him a normal 20 cal/oz. bottle without the rice cereal and he seemed to do ok for the first 3 oz. but then threw it all up. That was mess #1.
So I changed Ethan into his onesie that says "Automatic Sprinkler" - I bet you can guess what mess #2 was! Dan has prided himself in the fact that he hasn't been "automatically sprinkled" while changing Ethan's diaper so far. Well Ethan decided to change that record! Fortunately the leak was contained on the waterproof changing pad underneath him!
And shortly after the "sprinkler" accident, Dan fed Ethan his evening bottle - a regular 4 oz. high-cal/thickened bottle. All went fine with the feeding, but a few minutes later, Dan passed Ethan off to me to hold him for a bit. Ethan started sucking his fingers (he prefers them over his thumb) and gagged himself which made him throw up all over me for the 2nd time!
So then we decided it was bath time. He enjoys his baths, especially since I've started adding bubbles. He kicks and kicks in his baby bathtub over the sink, splashing soapy water all over the countertops - mess #4(not so bad!).
Then we jump forward to today - Ethan did great all day today, even for the few hours that his Mimi babysat him. But for his dinner, he took all 4oz. of his high-cal/thickened bottle and wanted more so we made him another 1oz. bottle. He seemed to do fine with that and STILL seemed hungry. So I let him sit in his bouncy seat for a little while to let his food digest and he started getting sleepy so I went ahead and gave him his nightly medicine and then he decided to throw up again. So I gave him a sponge bath, changed him into his jammies and he quickly drifted off to sleep so I took him upstairs to his crib for the night.
What an eventful 2 days! Well I hope you're able to get a little laugh out of this like we have! Oh, by the way, his cold is getting better and so is mine. I don't think the throwing up has anything to do with his stuffy nose. We're still on track for going to UNC next Friday, 1/18, for pre-op. If his cold is worse then we'll likely postpone the surgery, but I talked to his cardiologist office today and they said that he doesn't seem sick enough right now to postpone. That's good news because I just want to get this surgery over with and be back home once again.
Poor Ethan, he just can't decide how hungry he is sometimes! We've been feeding him 6 bottles in a 24 hour period. These bottles have been only 4 oz. because they are still high-cal (26 cal/oz. as opposed to a normal formula bottle that is 20 cal/oz.) and still thickened with rice cereal to give even more calories per bottle. Well yesterday I experimented with his new bigger 9oz. bottle that I just bought. Basically I've done the math and a 4oz. 26 cal/oz. bottle is about the same as a 5 oz. bottle of 20 cal/oz. I tried giving him a normal 20 cal/oz. bottle without the rice cereal and he seemed to do ok for the first 3 oz. but then threw it all up. That was mess #1.
So I changed Ethan into his onesie that says "Automatic Sprinkler" - I bet you can guess what mess #2 was! Dan has prided himself in the fact that he hasn't been "automatically sprinkled" while changing Ethan's diaper so far. Well Ethan decided to change that record! Fortunately the leak was contained on the waterproof changing pad underneath him!
And shortly after the "sprinkler" accident, Dan fed Ethan his evening bottle - a regular 4 oz. high-cal/thickened bottle. All went fine with the feeding, but a few minutes later, Dan passed Ethan off to me to hold him for a bit. Ethan started sucking his fingers (he prefers them over his thumb) and gagged himself which made him throw up all over me for the 2nd time!
So then we decided it was bath time. He enjoys his baths, especially since I've started adding bubbles. He kicks and kicks in his baby bathtub over the sink, splashing soapy water all over the countertops - mess #4(not so bad!).
Then we jump forward to today - Ethan did great all day today, even for the few hours that his Mimi babysat him. But for his dinner, he took all 4oz. of his high-cal/thickened bottle and wanted more so we made him another 1oz. bottle. He seemed to do fine with that and STILL seemed hungry. So I let him sit in his bouncy seat for a little while to let his food digest and he started getting sleepy so I went ahead and gave him his nightly medicine and then he decided to throw up again. So I gave him a sponge bath, changed him into his jammies and he quickly drifted off to sleep so I took him upstairs to his crib for the night.
What an eventful 2 days! Well I hope you're able to get a little laugh out of this like we have! Oh, by the way, his cold is getting better and so is mine. I don't think the throwing up has anything to do with his stuffy nose. We're still on track for going to UNC next Friday, 1/18, for pre-op. If his cold is worse then we'll likely postpone the surgery, but I talked to his cardiologist office today and they said that he doesn't seem sick enough right now to postpone. That's good news because I just want to get this surgery over with and be back home once again.
Sunday, January 6, 2008
We're sick :-(
Yes, it's true. Despite all our efforts to try to stay home and away from germs, somehow Ethan and I (Julie) are sick. Ethan's got a stuffy nose andI've got a bad cough. Last night Dan started to feel like he was getting a sore throat (something I never had with my cough) so we're praying he's taken enough Vitamin C to fight it off. Ethan and I have been sick since Thursday and with his surgery a little over 2 weeks away, we're at the critical point of trying to determine whether to hope he gets better and go ahead with surgery, or to postpone it a little bit longer. When we were at the hospital last month for his heart cath, Ethan's cardiologist said he needed to be healthy for at least 2 weeks - not even as much as a stuffy nose - prior to surgery so that the nasal congestion wouldn't complicate his breathing while on the ventilator for surgery. I really don't want to have to put off the surgery any longer, since I'm not looking forward to it in the first place, but we need to do what's best for Ethan.
So PLEASE pray for us to get well soon so we can go ahead and get this surgery over, if that's God's will for us at this time. Praise God that we have this flexibility to schedule it whenever we're not sick, instead of being in a critical state with his heart condition!
So PLEASE pray for us to get well soon so we can go ahead and get this surgery over, if that's God's will for us at this time. Praise God that we have this flexibility to schedule it whenever we're not sick, instead of being in a critical state with his heart condition!
Wednesday, January 2, 2008
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.
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.
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