Ethan Michael Fiore

October 7th, 2003 @12:36pm
4lbs 8oz
17 inches
Lucile Packard Childrens Hospital


About Ethan




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Lucile Packard Children's Hospital
725 Welch Road
Palo Alto, California 94304
(650) 497-8000
Lucile Packard Children's Hospital is located in Palo Alto, adjacent to Stanford University Hospital, approximately 20 miles north of San Jose, CA and 40 miles south of San Francisco.

News Archive

4-1-04 thru 4-18-04
Ethan celebrated his first Easter at Great Grammy and Granpy Booker’s house. We died Easter eggs and even let Ethan hunt for three of his own. Ethan also rolled over on his own for the very first time on Easter Sunday!! We were all very excited! What a day to remember!!

Thursday the 15th we traveled down to Stanford to have pre-op tests done for Ethan's surgery which was scheduled for Friday at noon. Ethan had an echo, a chest x-ray and some blood work done. He did well for the first two, but screamed for the last as you can imagine. After the blood was drawn and I picked him up he was a happy camper once again! We met with the physician assistant to the surgeon just to go over the procedure and sign the paper work to allow the surgery. We then made our way back to our “home away from home” the Stanford Motor Inn for a good night’s rest.

Friday morning we received a call from anesthesia, that Ethan’s surgery had been cancelled due to emergency cases that had come in the night before. They have rescheduled Ethan’s surgery for next Friday as the surgeon would like to do a Hearth Catherization on Tuesday. After reviewing the echo and chest x-ray again, the surgeon could see the possibility of opening the valve with out having to replace it at this time. They will not know if Ethan will require surgery until the Heart Catherization is complete so they did keep Ethan on the schedule for noon on Friday.

Ethan is growing overnight!! Todd and I (under tummy doctor’s supervision) have been aggressively increasing his feeds on an hourly basis, and he is responding well. We are currently at 32cc’s per hour, which is an increase of 10cc’s from 10days ago. He is much more active and talking a lot. Ethan has discovered he has a tongue, and it is out all the time. We even get “puppy kisses” from him. He is constantly smiling, and I know he will be giggling soon!!!! I can’t wait to hear that wonderful sound!!

We thank you for your continued support and prayers. We will update the website again pending the decision that is made on Tuesday. God Bless, Todd, Heather and Ethan.



**** correction**

Last update we forgot to mention Ethan also met unlce Bob and aunt Cathy for the first time. Aunt Cathy held him and rocked the little guy to sleep!! Thanks aunt Cathy and uncle Bob!!

2-11-04 thru 3-31-04
(Todd & Heather)
Well our miracle baby is almost 6months old and weighs 10lbs 7oz!!

He has been very social since our last update. He made his first and second trip to Manteca to visit Nana and E-pa(Todd’s parents). He met his cousins Jordan, Alexis, Savannah and Jessica for the very first time, as well as Auntie Karen and Auntie Laura. He also met friends Jennifer, Jessica, Tony, Angie and Ann, Erika and Ethan’s girlfriend Baylee. We had a wonderful visit!!

Ethan also made his way into Grubb&Ellis (Todd’s office) and PCN(Pharmaceutical Care Network-Heather’s office). Both offices were excited to finally meet the little guy!! Todd and I were so excited to be able to finally introduce him. Thanks again to both companies for all their support during our stay in Palo Alto. We could not have made it without your generosity!

Our little guy has become more and more active. He his kicking his legs and even gaining more control with his hands as reaches for his toys or our faces. He is holding his head up now for about 45seconds, then has to take a little break. Each day it is becoming stronger and stronger. He is also trying to roll over. If he is propped up on a pillow, he can push himself over. The trick is now to figure out what to do when he makes it to his tummy!! It is so fun to watch him, as you can tell he is thinking, “ now what?”. The tubes do not seem to be hindering this at all!! Keep working son, mommy and daddy know you can do it!!

On a fun note, Ethan has two bottom teeth, and they are adorable!! You will get a glimpse of them in the picture section. We love to make him smile so we see those cute little teefies!! He actually handled the first part of teething very well. He did not have any fevers or the normal things you would expect, however he had he pointer finger in his mouth kind of gnawing… this is when we discovered he first tooth!! Poor guy, he has two teethies and cannot use them!! We know he will be eating soon enough!!

On a not so fun note, Ethan has been scheduled for his second surgery to replace the valve which was put in at birth. The valve needs to be replaced as it is leaking a little more than what his cardiologist would like to see, which also maybe hindering Ethan’s growth. We knew there was some leakage after the first surgery, but the docs were in hopes Ethan would grow and his body would be able to handle it. Ethan is not growing at the rate expected. So we will be traveling back down to Stanford on April 15th for pre-op, and surgery is scheduled on the 16th.. This should not be another eight week journey however, the length of the stay will depend on Ethan.

We are also trying to add a little more weight to our boy prior to his surgery. In order to get some weight on him in a short amount of time, we had his feeding tube replaced with what is referred to as a J tube. This bypasses the stomach and goes directly into his intestines. It seems to be working. His medications are staying down and we have less vomiting!! With the tube in place here, we are hoping Ethan puts on the weight needed before surgery!! We are pushing him a bit, but the little trooper is keeping up! We will be updating the site while down at Palo Alto to keep everyone informed!!
Again many thanks for your thoughts and prayers. Please check out the pictures featured for this update.

More Pictures......Finally!!

1-15-04 thru 2-10-04
(Todd & Heather)
Ethan is now 4months old!! He weighs 9lbs 4oz and 22 ¼ inches long!! He is now in 0-3months clothes!! WOOHOO!!
He has received his 2month immunizations as well as the first two cycles of Synagis which is the flu shot for premature or cardiac babies. He handled it very well, only cried for a minute. What a little trooper!! He did not even run a fever!!
Ethan is now being more vocal, “gooing” at his toys or mom and dad!! He has also discovered he has two hands which have found their way to his mouth. He has figured out how to get his little thumb in there and suck on it. This seems to help his gums as it appears our little man is teething. We can’t believe our baby boy is ready for teeth!!
We attempted two ounces of breast milk mixed in with the Pregestimil, however Ethan was having more frequent cases of reflux and vomiting, so we have removed breast milk once again from his diet. Todd and I are hoping to start the 2ounce cycles once again, as we know breast milk is the best for him. Despite the vomiting and reflux, all Ethan’s doctors are very pleased with his weight gain!!
Heather has finally gotten brave enough to drive Ethan in the car alone, and have made several trips to Great Grandma and Grandpa’s house. She puts the “teddy mirror” in the back seat and is able to watch him while she is driving. She does keep her eye on the road so don’t worry!!! LOL
Ethan continues to pull his NG tube out every once in a while. We have had to replace it several times in the past month. Even though it is not the best thing for Ethan to do, we at least get to see his cute little face without any tubes or tape!!
Ethan has had many visits from his Nana, Epa, Kokie and Papa as well as great grandma and grandpa. Heather’s sisters and brother and our nephew A.J. have made many visits as well. Ethan is soo lucky!!
Although it has taken us a month to update the website, we will try to keep it updated at least once a week and will continue to send emails and the website is updated. Hopefully soon you may see us in person!! We are able to take Ethan out of the house to see friends and family just not in public places, but Heather and Ethan are home during the day to have visitors and would love for you to come.
We appreciate your continued prayers and support. Ethan is doing very well.
-=New Pics=-

1-6-04 thru 1-14-04
(Todd & Heather)
Ethan is getting bigger and stronger every day. He now weighs 8 pounds 5 ounces and is 21 3/4" long! He is starting to hold his head up on his own. Well, he can't hold it real steady but he's doing pretty good. His head kinda "bobbles" when he tries to pick it up.
While Ethan was at Standard he was tested for DiGeorge Syndrome. However we never received the results of the test. Since Ethan has been home he's been unable to get his immunizations. If he was positive for DiGeorge, he there may be some problems giving him his immunizations. But we did find out that his Digeorge test was negative. So we can now take him to get his shots.
Ethan was finally able to see his pediatrician for the first time. Ethan will see him in about a week and Ethan will get his immunization shots! Woohoo! After he has his shots, we'll feel more comfortable about taking him out of the house.
Ethan is starting to reach for things....kinda. He's not actually reaching out and grabbing but he throws his arms out sometimes when we put something in front of him.
He's also smiling more and more. We're trying to get pictures of him smiling but it's not as easy as it seems. :)
We tried feeding him breast milk but he didn't seem to take it as well as the progestimil. His stomach might not be ready for it. He was on breast milk for about 8 hours and he would cry like he was in pain...possibly stomach problems. So we put him back on his progestimil and he's doing just fine. We may try breast milk in another week or two.
-=This weeks pictures=-

12-26-03 thru 1-5-04
Ethan was able to visit with my parents the day after fact, they spent the night with us! My mom helped Heather get Ethan's room together...set up the crib, dresser, closet, etc. It looks sooo good! My parents brought up some shelving for Heather and I for our Christmas gift. I never thought I'd be so happy about shelves in my life!!!! LOL My dad was able to help me put together the shelf and I think I want another! hehe. My mom was able watch Ethan that night so Heather and I could get a little rest. On the 27th, Heather's mom came over to watch Ethan for a couple hours so we(my mom and dad, Heather, my sister Gina and future bro-inlaw Joe) could get some dinner and do a little geocaching. We had a heck of a time trying to find a cache in Natomas that was near some canal. We didn't actuall find it because the terrain was just plain muddy! We'll get it next time. We had a great time!
Ethan had an eventful New Years Eve. Heather, Ethan, and I were at home New Years Eve with Taelor, Jesse, and A.J.(sis-inlaw, bro-inlaw, and nephew). We had a fairly relaxing evening until about 2am on the 1st when Ethan decided he didn't want his feeding tube in his nose anymore! The little booger pulled out his last tube! Sooooo, we had to go to the emergency room at Sutter to get new feeding tubes! There was no real emergency....Ethan could be without his feeding tube for a couple hours without food or medication. We were able to get his feeding tube re-inserted and he was able to eat again. We were all so exhausted and slept most of the day. But, overall, it was a good New Years Eve. Our old roomate Zack came to visit us on New Years as well. Unfortunately, I didn't get any pictures on New Years Day...I'm slackin!!!! ;)
Ethan weighs 7 pounds 8 ounces! Dr. Davies was very please with Ethan's progress and had no concerns. We were seeing her once a week, but since Ethan has been doing so well with his feeding and is growing, we now only see Dr. Davies 2 times a month. Ethan will be seeing his cardiologist and pediatrician within the next couple days. Hopefully, I'll be able to report more progress!
Thanks again for visiting and don't forget to check out the pics!
Click Here!!

12-19-03 thru 12-25-03
Heather, Ethan, and I had a wonderful Christmas!.....and it's not over just yet! Christmas Eve was spent at Heather's parents house and Christmas Day dinner was at our house. My sister Denise, brother-in-law Simon, Jordan, and Alexis all came over on Christmas Day too!!! Unfortunately we weren't able to leave Sacramento to see the Fiore's since Ethan shouldn't be away from our house for too long. Ethan still needs to see his primary doctor and get his immunizations. Soooo, my parents are coming up tomorrow to stay with us for a couple days and do some geocaching! hehe.
Ethan has not seen any of his doctors since last week so we don't know how much weight he's gained. However, I can tell you that I've gained about 10 pounds over Christmas. LOL.
Ethan smiled for the first time on the 20th!!! He's smiled before but only in his sleep. It's hard to tell if it's a twitch or not. But, on the 20th he actually smiled at us while he was awake. He's been doing it more and more as we talk to him. It's so exciting!
Well, Ethan pulled out his feeding a couple times this week! Ugh! It breaks my heart every time we have to re-insert his feeding tube! I don't blame him for crying the way he does, I'm sure I'd cry just as much if someone tried to shove a garden hose up my nose and push it so far as to go into my stomach! Not only is it painful for him to have that tube fed through his nose, but that tube is taped to his little cheek! So we have to peel the tape off of his cheek and apply new tape each time. Poor little guy.
Ethan was on 16 cc per hour of Progestimil but has been gradually bumped up to 18 cc the last couple days. We have to be able to keep his feedings up with his weight gain. He was weighed last week at 7 pounds 2 ounces and i'm guessing he'll weigh about 7 pounds 8 ounces next week when he sees the doctor again.
Baby Ethan continues to grow and is as healthy as a baby could be. Thanks again for all of your thoughts and prayers. We cannot say thank you we'll just keep saying it. Thank you!!! lol
Lot's of love and Merry Christmas! Have a safe and Happy New Year!

(You'll notice that some of the pictures are extremely dark. I used my digital camcorder to take the pics without flash....what a mistake!!!! DOH!!!)

12-15-03 thru 12-18-03
(Todd & Heather) Ethan ways 7 pounds 2 ounces as of the 18th!!! Ethan saw his cardiologist a couple days ago. Dr. Wright did not have any concerns about Ethan and agreed that Ethan looks well. Ethan is still retracting a bit, but is comfortable. Ethan also saw his gastro intestinal doctor. She agreed that Ethan looks great too! Since Ethan has been gaining weight, she decided we up his feeds to 17cc from 16cc per hour. Ethan still spits up every once in a while, but nothing to be concerned about since tends to spit up during or after we hold him Ethan is still on his medication every day and continues to require oxygen. At this point, only time will make Ethan healthier. He needs to gain more weight! :) After the holidays, Dr. Wright will try and make some changes to Ethan's medications and oxygen as long as Ethan is gaining weight. We're all doing well. Here are a few pics: Click Here

12-10-03 thru 12-14-03
(Todd) Ethan is doing great! He's taking his feeds well and is gaining weight! He is 6 pounds 12 ounces as of the 12th. His next doctor visit is Wednesday and I'm guessing he'll be almost 7 pounds. Anyone wanna place any bets? hehe. Heather and I are getting some sleep, but not as much as we'd like. ;) But I guess that's expected and we're hangin in there. Tired or not, we're enjoying every minute of being home with Ethan.
Ethan is still on his oxygen and is still on continuous feeds. So it's hard to take Ethan out of the house. It definitely requires 2 people to take Ethan, his oxygen, and his feeding machine anywhere. Ethan will be seeing his nurse, occupational therapist, cardiologist, and gastro intestinal doctor on a weekly basis to help determine how much longer Ethan will depend on his equipment and medication. The last few days have been major issues!


December 4th through the 9th have all been posted today along with pics. Thanks for visiting!!!!

(Todd) Ethan looked to be struggling a little bit again with his breathing. We took him to his cardiologist and the first thing he noticed was the big tube in his nose and had the same concerns we did. He immediately called the GI doctor to see if she had a smaller feeding tube for Ethan......she did. Dr. Wright didn't think he looked much different from when he left the hospital other than the feeding tube, so he sent us directly to Dr. Daveys office.
Dr. Daveys and the nurse(Jennifer) could not believe that such a big tube was put in Ethans nose! Jennifer pulled the tube out...along with a big boogie!!!!!!! There was quite a bit of mucus stuck around that tube! As soon as that tube was pulled out, and a small one put it, it was very apparent that Ethan was breathing sooooo much better! :D
So we're back home with Ethan and all is well. He's still retracting a little but hopefully it will lessen as the days go by. We just have to keep Ethan healthy.
OH!!!! Ethan weighs 6 pounds 8 ounces today!! He is about 20 inches long! Whoop!
-=Todays Pics=-

(Todd) We're finally home!!!! Again!!! lol We were discharged at 5pm today. We were waiting for our health care company to come by and drop off this new machine that continuously feeds Ethan. We had to tube feed Ethan a little bit since the health care company wasn't able to meet us here at the house when we arrived home.
Ethan is doing ok. I think he's happy to be back are we. Just before we were sent home, the nurse changed Ethan's feeding tube to a larger one. We tried to tell the nurse that it's way too big but she pretty much dismissed our concerns. Ethan has been having a hard enough time breathing being congested, having a small feeding tube in his nose, and and oxygen canula under both nostrils! And the nurse just added this gigantic tube that definitely looks uncomfortable for Ethan. Oh well......we have an appointment tomorrow with Dr. Wright and he might be able to address our concerns.
Heather's mom and grammy were able to come by tonight to welcome us back home. We didn't get many pics today, but we took a couple of Heather's mom and grammy with Ethan.
-=Todays Pics=-

(Todd) So far so good.......Ethan seems a little better today. Must be a combination of rest and medication. He should be discharged tomorrow. There is really no reason for him to be in the hospital anymore. The nurses are here giving him medication and changing his diapers when we're not doing it. We should be all set for tomorrow.
Ethan's heart rate and breathing are much better today. He must feel more comfortable....I know we do. :D
-=Todays Pics=-

(Todd) Ethan is feeling better today. He was able to get a lot of sleep since he was up with us all night yesterday...or I should say we stayed up with him. ;) Ethan is still retracting a little bit but is doing ok. He's retracting because of the fluid in his lungs. There isn't really a way to remove the fluids other than to wait it out. As long as Ethan stays well, the cells in his lungs should break down the fluids in his lungs. He still sounds a little congested and there isn't much we can do about that either. We just need to keep Ethan upright at all times. It will help his lungs and his congestion.
His heart rate and breathing are still a little fast, but it's not abnormal for his situation. We'll take care of him here in the hospital and make sure he gets plenty of rest.......'cause we need some rest too! ;)
-=Todays Pics=-

Ethan had to be taken to the emergency room early this morning. He was having problems breathing but is now doing just fine. We are at Sutter Hospital here in Sacramento and should be back home by monday.
Updates for December 4th and 5th will be up within the next couple days.
(Todd) Ethan was taken to the emergency room at Sutter and has been admitted. We took him in about 2 this morning and we've not had any sleep. We are exhausted!
We paged Ethan's cardiologist this morning and spoke with him about Ethan's condition. There were a few signs we saw in Ethan that might indicate something is wrong. We look for rapid or irregular breathing, flaring nostrils, retracting, grunting, blue color, and coughing(click here for details of these symptoms). Heather and I were noticing the first 3 of those symptoms. To be safe, the cardiologist suggested we take Ethan to the emergency room to take a look at him and make sure he's ok.
While in the emergency room, the doctor checked his vitals and was definitely concerned about Ethan's "retracting". The doctors here don't know Ethan and only know what we've told them about his surgery and how Ethan has been recovering. The doctor at Sutter immediately thought Ethan's symptoms were a sign of "congestive heart failure".....something wrong with his heart and fluids may be collecting in Ethan's lungs. The doctor was scaring the b'jesus out of us! But we knew it had nothing to do with his heart....his heart was very strong when he was released from Stanford. We knew there was something else....maybe something as simple as congestion preventing his breathing or something less serious than heart failure.
After about 4 hours, chest x-rays, EKG, and phone calls to Ethan's cardiologist, we were admitted into Sutter hospital. Once admitted, we waited for Dr. Wright(Ethan's cardiologist) to show up to take a look at Ethan and hopefully help figure out what's going on. Ethan's heart rate and respitory rate were up a little and cause for concern.
Dr. Wright did show up later that morning and was able to look at the X-rays and EKG. He did notice fluid in the lungs and suspected it was Ethan's formula.....possible aspiration. He immediately called a GI doctor(gastro intestinal)he works with(Dr. Daveys), and she was able to come visit us at the hospital as well. She confirmed that Ethan has been aspirating, caused by Ethan's acid reflux. Ethan has been vomiting after feeding and his formula must be coming up into his lungs.
Dr. Daveys recommended that Ethan get continuous feeds and no more bottle feeding. Ethan refluxes after a lot of feeding. So, instead of giving him his 47 cc once every 3 hours, Ethan will be giving a continuous feed of formula at 16 cc per hour. All this is done through Ethan's NG(feeding) tube. Also, Ethan has been taken off Zantac and is now givin Prilosec. This should help reduce his reflux a bit and prevent him from vomiting
We'll proly be here through the weekend.
There are only a few pics today. Click Here!

(Todd) Today we took Ethan to get blood work done. The first lab we went to did not accept our insurance. Ugh. It's not easy for one person to carry Ethan with a diaper bag and oxygen's not necessarily easy for 2 either. We packed our things back in the truck and went to another lab and Ethan finally had his blood work done.
Towards the end of the day we noticed Ethan was working kinda hard to breath.....he didn't look very comfortable. It sounds like he's a little congested. Apparently babies only breath through their noses and aren't too happy when congested. We checked his heart rate and breaths and both appeared normal. But it was obvious by looking at his chest that he was breathing pretty hard. We tried a humidifier but it doesn't seem to be helping.
Ethan continues to feed well but he has been getting tired faster than usual. Proly because he can't breathe well. Hopefully this humidifier might help clear him up a little by morning.
We were able to get a few pics today. You can check'm out here:
-=Todays Pics=-

(Todd & Heather) Ethan slept well last night....which means we slept a little better as well! :) Ethan seems to be bottle feeding a little better. Every once in a while he would take over 20 cc of his Progestimil. He seems to be taking more than 20cc more often. And he's definitely feeling hunger pains. He still vomits every once in a while after feeding, but it doesn't seem like a lot. Sometimes his vomiting is projectile and it flies! lol
He's acting like a normal baby more and more each day. He cries when he's hungry, he cries when his diapers are dirty, and he cries when he's uncomfortable or wants to be held.
Our morning was exciting. We gave Ethan his first bath at home. As Heather picked him up and put him in a towel to dry him off, he had a bowel Heather's hands. LOL So we put him back in the tub for a minute and cleaned him up again.
A home health nurse came by today to check on Ethan. She checked his temperature, weighed him, and measured him in length. Ethan weighs 6 pounds 1 ounce and is 20 inches long. She talked to us a bit about Ethan's routines, feeding, and dirty diapers. The nurse stayed for about an hour and did not have any concerns with Ethan's health. Ethan is going great!
Ethan pulled out his feeding tube tonight!!! Yikes! We thought about taking him to the hospital to have them put the tube in but we ended up doing it. Ethan didn't like it much, but we had to feed that tube through his nose and then had to use a stethoscope to make sure it was in the right place in his stomach. It's possible that the tube can go into his lungs instead of his stomach. We used a syringe to push air through the tube and used the stethoscope on his stomach to listen for the gurgly sound. If we don't hear it, it's not in the right place and we have to adjust the tube. But I think we did it right. We heard the gurgly sounds. We also used the syringe to pull out a little milk that was still in his stomach so we knew it was in the right place.
Ethan had a couple visitors today. Heather's parents came over for a little bit to say hi and our friend Melissa came over as well.

We have been receiving so much help from everybody and we've been wanting to make individual recognition of everyone's prayers, thoughts, and gifts on this site. However, we thought it would be best to just say a big THANK YOU to everyone! And we'll hopefully be able to see or at least talk to everyone over the next couple months. God bless you all!!!
-=Todays Pics=-

(Todd) Our first night with Ethan was pretty tiring. It's very different to not have nurses around. Heather and I take turns at night watching Ethan so we can get a couple hours sleep. We don't always take turns. If there is a break in the evening, Heather and I can both take a quick nap.
He's fed every 3 hours and is bottle fed first. He feeds for about 10 to 15 minutets by bottle and then the rest is tube fed. Tube feeding takes about 20 to 30 minutes. By the time Ethan is fed and comfortable. There's only about another hour and a half to 2 hours before it's feeding time again.
He's still taking 47 cc every 3 hours......10 to 30 cc by bottle and the rest is tube fed. He still vomits a little after eating. We're still not exactly sure why. I'm sure it's a combination of things....medications, too much moving around during feeds, and 47cc is just a lot for Ethan to take at one time. As he gets bigger and stronger, he should be able to tolerate these things a little better.
My parents were able to visit this morning with us. It was nice being able to relax in our own house with family. Later in the evening, some of Heather's family came to visit. Auntie Taelor was able to hold Ethan for the first time.
We weren't able to take many pics today, but will be making up for it over the next few days as Heather, Ethan, and I settle in.
Ethan met with his cardiologist today. Dr. Wright was very pleased with Ethans repair. Ethan will probably be following up with Dr. Wright on a weekly basis. Ethan is going to have some blood work done tomorrow to make sure he continues to stay healthy.
Ethan looks great and we're soooo happy to be home!
-=Todays Pics=-


(Todd &Heather) We finally made it! There were hold-ups throughout the day. The main hold-up was Ethan's portable oxygen. It was ordered at 8 this morning and we were supposed to have it within a couple hours so we could start our way home. Apparently there were some mis-communications between the hospital and the company bringing the oxygen. The oxygen didn't arrive until after 2pm!. By the time we said our goodbyes and packed the truck, it was 5pm!!!! We left the hostpital and went directly into Bay Area traffic. The drive usually takes a little over 2 hours and it took us over 3 hours. The roads were wet, traffice was dense, and we were kinda nervous and anxious getting Ethan home. We are now home and extremely exhausted.
Not only do we have to adjust to Ethans special needs(7 different medications, tube feeding, and oxygen), but we still have to unpack our house! We moved in days before Ethan was born. We made our first 2 mortgage payments on a home we hadn't lived in for nearly 2 months!!!!
Well, we're home safely and Ethan has his first visit with his cardiologist tomorrow.
We will continue to update the site every day with news and pics of Ethan's progress. We would like to put pics up of Ethan without tubes attached to him. Hopefully soon!!!
Ethan weighs 2770 grams today.......6 pounds 1 ounce!!!!
-=Todays Pics=-

(Todd & Heather) Our second night with Ethan didn't' seem as hectic as the first. I think we were able to get 4 hours of continuous sleep!! Woohoo! heh.
The nurse taught us how to insert Ethan's feeding tube. She pulled the feeding tube out from Ethan's nose and handed us a new tube to put back in his nose. Poor little guy was squirming and squealing as we were pushing that tube in his nose, down his throat, and into his stomach. Once it's in, he's comfortable. Hopefully we won't have to worry about inserting the tube when we're home. It's possible, but doesn't seem likely that Ethan will pull it all the way out. He grabs at his face quite a bit and does get a hold of the tube. However he never has pulled it all the way out.
Ethan weighs 2685 grams.........5 pounds 14 ounces!!!! He's still vomiting after feeding every once in a while, but it doesn't seem to be anything abnormal, and it certainly isn't hindering his growth. You grow boy! ;)
At 7pm tonight, Ethan was moved to yet another room! Unfortunately it's not private and we're sharing the room with another young woman and her newborn. Heather and I couldn't believe they switched us rooms again....the night before Ethan is discharged. Oh well. We checked out of our hotel and our bags are packed. Hopefully tomorrow night I'll be updating this site with something about, "WE'RE HOME!!!". :D

(Todd) Heather and I spent our first night with Ethan......and we didn't get much sleep. We were up every couple hours taking turns with Ethan. It's amazing how early a baby can be spoiled. :) We fed Ethan, burped him, gave him his meds, and changed his diapers all night long. I don't think we slept more than 2 continuous hours.. This is gonna be interesting when we get him home. ;) We can't wait!!!
My parents were finally able to come down and see Ethan now that he's healthy. Unfortunately, my parents have been sick the past few weeks and did not want to chance getting Ethan sick by seeing him before they were absolutely sure they were healthy.
The doctor came around today and assured us we are being discharged on Monday morning. The paperwork has already been started and should be signed for discharge by 7:30am on Monday. We're keeping our fingers crossed.
Ethan weighed 2600 grams today!!! He is 5 pounds 11 ounces!!!!! Woot!!! He continues to bottle feed well and is keeping most of it down.
Be sure and check out todays pics! Only 2 more days until we're home. And I will continue to update this site as we take Ethan home.

(Todd & Heather) Ethan weighs 2550 grams today!!! That's just shy of 5 pounds 10 ounces! He's still gaining weight. He didn't vomit much at all today. The only time he vomited was when he had to take his iron...ack! Otherwise, he didn't spit up at all. He seems to be digesting the formula well.
The lactation consultant came by again today and helped out with Ethan's breast feeding. He did ok. The instincts are there, but he lacks the size and strength to get a good latch. It won't be long before he's on breast milk alone.
We tried taking Ethan's oxygen off today but we weren't able to leave it off for long. When he's awake, he's fine. But when he goes to sleep his oxygen saturation drop pretty quick. So, we're back on oxygen. More than likely, he will be going home with it.
Ethan graduated today!!! We moved to a private room where there are no nurses in the room. Heather and I take care of him as if we're at home. And there are NO monitors!!! Whoop!! Ethan is our only monitor. We now have to rely on Ethan to tell us how he's doing. It's kinda's quiet...and there are only 3 of us in this room. There is one small couch and a recliner. We haven't quite figured out sleeping arrangements yet. The one who sleeps on the couch may sleep the best, but the person who sleeps in the recliner can hold Ethan all night. We'll proly switch off. :)
We continue to receive so much support from family and friends(including PCN and Grubb & Ellis). We can't say thank you enough! Words can't explain how thankful we are...THANK YOU!
-=Todays Pics=-

(Todd & Heather) Ethan, Heather, and I had a wonderful Thanksgiving. Heather's parents, siblings, nephew, and grandparents were able to bring Thanksgiving to us here at the hospital.
Ethan was passed around just like the mashed potatoes. Ethan is still vomitting a couple times a day after feeds. But it's usually because we're holding him and moving him around a little too much. He doesn't have any problems when we're not around. The nurses feed him while we're away and he doesn't usually vomit. However he did have an acid reflux test which tests the acidity in his stomach. The results on the 25th cambe back positive for high acid levels. This would explain some of his vomitting. But he has been taking Zantac since the 25th to lower the acid levels in his stomach and prevent him from vomitting. But the Zantac doesn't prevent him from vomitting when we're shaking him like a can of spray paint. ;)
Ethan lost a little weight again today. He weighed 2420 grams this morning. Which is about 5 pounds 5 ounces. Hopefully he can begin to keep his food down so he can grow! He continues to do ok with his bottle feeds. He takes anywhere from 5 to 20 ounces and usually takes more in the evenings.
Heather and I gave Ethan a bath today and he wasn't too happy about it. With all the vomitting he's been doing lately, he's gonna get a bath whether he likes it or not! :) We took a few pics of him in his little tub. You can check'm out in the picture section.
Thanks again for all you thoughts and prayers. And thanks for visiting Ethan's site. Heather, Ethan, and I hope you all had a Happy Thanksgiving!!

(Todd & Heather) Ethan breast fed for the first time today! We weren't expecting him to catch on right away but he did pretty good for the first time. The lactation consultant came by and showed us how to teach Ethan to breast feed. Ethan was rooting a lot and latched on briefly but was not able to hold on for too long. He's still a little weak. We'll keep trying every day and see if he can progress. As long as he gains weight and gets a little stronger, he should be able to breast feed when the time comes.
Speaking of weight, Ethan lost a few grams. He weighed about 2480 grams. He lost about 40 grams but isn't abnormal. He's weighed each day between 4am and 7am. He feeds every 3 hours at 3, 6, 9, and 12. So if he's is weighed between 6 and 7am, he may have already fed and will weigh more than if he was weighed between 4 and 6am. I'm not sure exactly at what time he's weighed, but it could explain the difference in weight between days. So today he weighs 5 pounds 7.5 ounces.
We're still set for Monday. But we did hear that it's still possible we could be discharged on Saturday or Sunday. We won't get our hearts set on it. As far as we know, we'll be home by Monday!
Have a Happy Thanksgiving!!!!

(Todd) It's been confirmed that Ethan is being discharged on Monday December 1st. Now that everyone is on the same page(sacramento and stanford), I'm pretty sure this is it. Ethan will be home Monday and he will see his cardiologist the next day on Tuesday. It's probably better this way as we'll be sure that Ethan is absolutely ready to be home with us......and that we'll be ready to be home with him.
Ethan gained weight today! He weighs 2525 grams...100 more grams than yesterday. There are about 28 grams in an ounce so he gained about 3 ounces. The little guy is 5 pounds 9oz....1 pound more than his birth weight 7 weeks ago today.
Heather and I will be meeting with a lactation consultant tomorrow so that Ethan can start breast feeding!!!! We can't weight till he actually gets the good stuff!!! However, even if he does breast feed well, it will not be his only source of nutrition. There are 30 percent more calories in his formula than breast milk. So he will be on his regular feeds of formula and then be giving breast milk in addition. Once he's strong enough to feed enough breast milk on his own to sustain growth, he will then be taken off the formula. We'll wait and see.
Unfortunately, we do not have any pics today. Heather and I had to be in Sacramento for Heathers doctor appointment. We've gathered so many things here in Palo Alto that we took advantage of going back to Sacramento by taking some of our personal things back home. Now we have plenty of room in the truck for Ethan! ;) We'll make up for the missed pics over the next couple of days.

(Todd & Heather) We have good news and some not so good news. The not so good news is that we will not be home for Thanksgiving. There is nothing wrong with Ethan that would prevent him from going home. There happens to be a scheduling conflict with Ethan's cardiologist in Sacramento. The doctors here would release Ethan on Wednesday if Ethan's cardiologist in Sacramento was available for a same day visit. It turns out we are a little late in trying to have Ethan's cardiologist ready on Wednesday. And his office closed on Friday as well. The next available appointment in Sacramento is Tuesday, December 2nd. There is a slim chance that Ethan will be released on Friday. However he may not be released until Monday. At this point, we're just waiting to see if we can get Ethan in to his cardiologist around the day we arrive in Sacramento. So it looks like Heather and I are doing Thanksgiving at the Peking Duck here in Palo Alto! LOL. KFC isn't looking too bad's almost like Turkey. LOL
Ok, now for the good news. Ethan is doing great!!! He gained about an ounce and is now 2425 grams. About 5 pounds 5.5 ounces! His bottle feedings continue to progress. Ethan was measured today but forgot exactly how long he's grown. If I'm not mistaken, he's about 20 inches now...maybe a little longer. I'll try and get his exact length tomorrow!
Ethan had a chest X-ray and an ultra sound and they both look good. The doctors assure us that his heart is functioning as good as can be expected. Way to go little man!

(Todd & Heather) Ethan weighs 2395 grams....which is about 5 lbs 4.5 oz! He's still gaining weight. Heather and I were able to give him his different medications which Ethan takes orally. We simply take a syringe and just squirt the meds directly in his mouth. He took them better than I thought he would. He made some funny faces when he tasted them, which gave us the impression that the meds don't taste very good. ;)
Heather's dad was able to bottle feed Ethan today. He took a few ounces, which we thought he'd do. He doesn't feed much during the day. We ended up feeding the rest through his feeding tube.
You can see from todays pics that Ethan got a sponge bath from his mommy. :D He didn't get too mad about it.....a few grunts here and there, but he never cried! He's been such a trooper!!!
You'll also notice from todays pics, that Heather's parents came to visit! They spent most of the day with us.
We spoke with the doctors this morning and asked a few questions about Ethan coming home by Thanksgiving. At this time, there is nothing, and should be nothing, preventing us from having Ethan home on Wednesday!!!! We can't wait to have Ethan home!!!!

(Todd & Heather) Ethan fed well today! He took 35cc at one time!!! Heather and I fed him 19cc the day before. So this is a big jump. However he doesn't feed like this all the time. He does his best feeding in the evening. We give him 39cc every three hours and he took 35 at once! So we tube fed him the other 4 ounces. He's holding it down well. All of his vitals are good as well. The oxygen was turned off for a bit to see how he'd do without it. He's fine when he's awake. But when he is in a deep sleep, he is a little too relaxed and doesn't breath as strong as he should. Usually we just wake him up a little and his oxygen saturation levels go back up. So, he's still on a little oxygen today and he's doing great!!!
We had another visitor today. Our friend Melissa came down and we had a lot of fun! Melissa was able to hold Ethan and feed him too! Be sure and check out todays pics!

(Todd & Heather) Finally!!!......We've moved upstairs! :) Ethan is in a room with 3 other babies. There are 2 or 3 nurses in the room that watch over them. When Heather and I are not around, the nurses take care of Ethan.....bottle feed him, tube feed him, burp him, hold him, rock him, give him his medications etc. However, when Heather and I are there, the nurses teach us/have us take care of Ethan with little assistance. We want to be as ready as possible to take Ethan home and be able to give him the care he needs. We're learning how to give him medications orally AND with a syringe and needle! Ouch!! We've been doing fairly well so far. The goal is to have Ethan home Wednesday the 26th......the day before Thanksgiving.
At this time, there is nothing preventing us from taking Ethan home in the next few days. His X-rays continue to show no fluids and his heart looks as strong as ever. He's feeding as good as can be expected. In fact, he took 19cc from the bottle yesterday!!!!! He actually fed until he was somewhat satisfied. It was amazing! We cannot believe how far he has come. It's kinda funny how excited we get from watching him do the normal things that babies do. :) When he finished the 19cc from the bottle, we fed him the other 20cc from his NG tube. All we have to do to feed him with the tube is put the formula in a large syringe without the piece that's used to compress and push the fluids out of the syringe. We connect the tube from his nose to the syringe and hold it 6 inches above his head and let gravity pull the formula from the syringe, through the tube and into his stomach. It usually takes 15 to 20 minutes until it all drips into his stomach. And that's it....not too difficult.
Ethan was getting 26cc of Progestimil every 2 hours. He's now getting 39cc every 3 hours. It's the same amount if you average it every hour, however now he's getting 13cc more at one feeding. And he goes without another feeding an hour longer. We're really trying to get him to feel hunger so he really latches onto the bottle when he's ready to feed next. So far so good!
Ethan maintained his weight from yesterday. He's still about 5 pounds and 4 ounces........almost a pound more than his birth weight. We'd like him to gain weight every day but we realize that may be a lot to ask. As long as he's not losing weight, we are as happy as can be! Way to go Ethan!!!!

(Todd and Heather) Ethan hasn't moved upstairs yet. He's still in the CVICU and doing well. He weighs 5 pounds 4 ounces!!!! He might be 5 1/2 pounds by Thanksgiving. We'll see!
Ethan definitely has a voice now. When he opens his mouth to cry....he actually cries! It's sooo cute. We were a little worried that we'd be taking him home without a voice and not being able to hear him cry if he was uncomfortable or in pain. But we definitely hear him today!
Ethan had a Barium Swallow test today. Occupational Therapy was a little concerned that he may be aspirating - milk may be leaking into his lungs when he swallows. He wasn't showing any signs or symptoms of aspiration. But since his voice has been taking so long to come back, it could mean his vocal cords in his throat are a little weak and not working the way they should and possibly allowing fluid to leak into his lungs.
Ethan had to swallow this dense compound called Barium. It was fed to him through a bottle which he swallowed without a problem. The doctors took an X-ray video from a profile shot of Ethans head and upper chest. We could clearly see the Barium going directly into his stomach and not his lungs. Whoop!! It's still possible he may aspirate in the future but as of now, at the rate he's swallowing, he is not aspirating.
Ethan's vitals continue to stay strong and he looks very healthy. He is still on a little oxygen, but they will be taking him off in a couple days. They wanna make sure he comes home with only a feeding tube and nothing else. We're still shootin for homecoming by Thanksgiving and so far, it looks good.

Todd and Heather) Ethan is not coming home just yet..... they have decided to finish his stay in the ICU at Stanford. Instead of moving from ICU to ICU, we'll just go home from here early next week. We will be moved upstairs to the 3rd floor possibly sometime today where he will finish his stay at Stanford.
During one of his bottle feedings today, Ethan took 10cc's. Later on in the day, he took the entire bottle which is 26cc's. His feedings are getting better and better each time. He is working really hard to go home on bottle feedings instead of tube feedings. Keep working little Buddy, you're doing a great job.
Ethan has fully recovered from his surgery and all vitals continue to look really good. The only medications Ethan is on are the diuretics, Digoxin and Reglan. He will be on Digoxin for a while, so Todd and I will learn how to give his meds through the tube if in fact Ethan comes home with the NG tube. Hopefully Ethan will not need the diuretics and reglan for too much longer. The doctors are hoping to take him off these meds within the next couple of days.
Our goal was to be home by Thanksgiving, and so far we are on the right track. Ethan should be home by early next week. Don't foget to check todays pics.
<<<<< Update >>>>>>
Yesterday, we did not take any pictures. However, Joe(Heather's dad) took some pictures during his visit and emailed them to us. Pics are up for the 18th! Thanks Joe!!!

(Heather) I can't believe it, but our little boy is 6 weeks old today! AND we are coming home! The plan is to be at Sutter Memorial in Sacramento by Thursday. The docs here at Stanford are coordinating with the NICU/CVICU docs in Sacramento for the transfer. If the transfer cannot be made by Thursday, it will be done on Monday as the docs do not want to make any transfers without the appropriate staff on hand. Can you believe it, we're coming home!! Todd and I are soo excited. We don't know how long our stay at Sutter will be, but at least we'll be home.
Ethan did very well today on his feeds, still taking 26cc's every 2 hours on the even hour. Ethan took 3cc's from the bottle while "Papa" (my Dad) worked with Occupational therapy. We are very pleased with Ethan's progress nippling. Ethan continues to grow. He is now 2.34 kilos (5lbs 2oz). YAHOO!!!
You'll notice there aren't any pictures today. Todd had to go into work and was gone almost all day and he usually is the one taking all the pictures while I'm holding Ethan. hehe. ;) However, I was gonna take the pictures today but Todd mistakenly took the memory card for the camera. Sooooooo, no pics today. We'll have pics tomorrow for sure!

(Todd & Heather) Ethan moved again. He was moved back to the room he was in before. He had another great day. He is still adjusting to his feeds being givin all at one time. He usually vomits just after he's givin his full 26 cc dose. Well, that's not entirely true. I should say that he vomits after he receives his full 26 cc dose and we've been handling him. If he's left in his bouncy chair receiving his feeds, he does just fine. But when we get our greedy little hands on him, we sometimes tend not to keep him as vertical as he should. If his head isn't higher than his stomach after a feed......he vomits. It will take him some time for his stomach to tolerate the milk all at once. He is fed every 2 hours on the even hour. And we are able to bottle feed him 2 times a day for no more than 10 minutes or 10cc...whichever comes first. During his first bottle feeding, he took 6 cc while Occupational Therapy was with us. This evening he took another 5 cc. He's doing pretty good. He just needs to build enough stamina to take enough milk for him to gain weight. So, for now, he'll be tube feeding and bottle feeding.
Speaking of gaining weight.....Ethan is 5 lbs 1 oz today!!!!!! WOOT!!!!!
Be sure and check todays pics. We were able to get some good pics of him feeding. CLICK HERE

(Todd & Heather) Ethan had his first real bath today! The nurses took a few polaroids for us! He's been getting little sponge baths in his crib but they bathed him in the sink today. Yeah.....the sink! LOL. Well, actually, they bathed him in a pink plastic tub in the sink.
Ethan is no longer on continuous feeds. He was on 13cc an hour of Progestamil. Now, they're giving him 26 cc all at once every 2 hours. We're trying to get him familiar with actual feedings. Hopefully he'll feed from the bottle better now once he feels what hunger is like.
Ethan no longer has any lines in his vains! He had a "PIC" line in his leg that ran clear up to his hip area. That line has been removed since Ethan no longer is receiving any meds intravenously. All of his meds are taken orally(through the feeding tube)! The only tubes/wires attached to Ethan are his heart and respitory monitors, blood pressure monitor(leg cuff), oxygen, oxygen saturation monitor, and feeding tube! Ethan's health continues to progress.
Ethan did not gain any weight today. He is still about 4 lbs 14 oz. As long as he's not losing weight, we're one day closer to getting him home!
In todays pics, you'll notice that the pictures of Ethan's first bath are of low quality. It's because I took a digital photo of the polaroid. I wasn't sure if it would work, but it did. Take a look!

(Heather) Ethan had another awesome day! We did get a big surprise when we walked in his room, and he was not there!! He was moved back to the room he was originally in after surgery. We were kind of scared thinking something had happened, but it turns out Ethan is requiring less attention and was placed in the room with other babies that require less attention. So we are back to familiar territory.
Ethan still continues to take 13cc's per hour of Progestamil, and is doing well. (He was asleep for most of the day, so we were not able to work with the bottle). He weighed 2220 grams which is about 4lbs 14ouncec,so he is gaining weight!!
We briefly spoke with Dr. Reddy today, and he confirmed that Ethan is doing very well. Heart rate has been a little on the high side, but not because anything is wrong.Heart function is great! As Ethan continues to grow, his heart rate will slow down. Dr.Reddy is very pleased with Ethan's progress.
Auntie Gina and Uncle Joe came down to visit Ethan. Its their first time seeing Ethan so healthy! They were really happy to see him!!
Don't forget to check todays pics!!

(Todd & Heather) No issues today! Ethan is 100% better! He looks great. All of his vitals are where they're supposed to be and Ethan was alert as ever.
Still no definite news on when Ethan will be home. There is a very high chance(almost positive) that Ethan will be transferring to Sutter in Sacramento where he'll stay for a week or so to continue his bottle feeding. There still is a small chance that we may bring Ethan straight home instead of going to Sutter. We'll just take it one day at a time and cross that bridge when we get there.
Physical Therapy came by and Ethan did his "exercises". He stretched and bent his limbs and we were able to get him to move his head around on his own. So far so good.
Ethan took a couple CCs from the bottle while Occupational Therapy came by. He was, again, too tired to take much more. It seems he goes into a deep sleep just before OT gets there.
Ethan weighed 2180 grams today! That's 4lbs 13oz!!! I bet he'll reach 5lbs by Monday!
Heather's Mom and Grammy came down for a visit today. You can see'm in todays pics! Click Me!

(Todd & Heather) Ethan did much better today! After taking some medication last night, Ethan is breathing much easier. He looked to have more energy today and was very alert. The doctors did look at an X-ray of Ethan's chest and did notice a little fluids but were not concerned at all. Ethan is showing no signs of problems. He only shows signs of a premature baby recovering from heart surgery and is completely normal.
Ethan has been taken off the Portagen and been givin Pregestamil. The fats in it are more easily digested and absorbed than breast milk. It's just one step closer to Ethan being able to take moms milk.
Occupational Therapy came by again today (as usual) and Ethan was able to take another 3cc. He was a little tired around feeding time so he wasn't able to take much more. The Pregestamil apparently does NOT taste good at all. So we may be able to expect Ethan to feed a little better when on mom's milk. Unfortunately he won't be able to have moms milk until the doctors feel certain that fluids will not accumulate in his chest again. It could be weeks.
Ethan gained another 20 grams today. He now weighs 4 pounds 12 ounces! Four ounces more than his birth weight! Way to go little buddy!


(Todd & Heather) Ethan had an okay day. He was extremely tired. He has been "retracting" all day. We can see that he is working very hard to breathe. The doctors aren't exactly sure what the cause is just yet. We've seen Ethan retract before, when he had fluids in his chest that would not allow his lungs to fully expand. Ethan is not in any pain what-so-ever. He just looked exhausted at times. You can see from todays pics that he is still very alert.
Still no word on when Ethan will be moving "upstairs" or back home. We have a feeling that we may not have Ethan home by next week. We'll keep our hopes up. Ethan's heart beat is a little on the high side. It's not affecting him in any way, but the doctors will be doing some testing to try and find out the cause. Ethan's blood pressure and body temperature continue to be stable.
Occupational Therapy came by again today to help Ethan with his bottle feeding. He took 4 cc today and had no problems keeping it down! He proly would have been able to drink more but he was sooo tired today.
Physical Therapy came by today as well. We were taught how to help Ethan with his stretching. He hasn't been moving around much since his surgery and needs help keeping his muscles loose. We help Ethan extend his arms and legs, lift his arms up over his head, turn his head, twist his hips and bend his ankles. He actually seems to like all his stretching. :)
Hopefully the doctors will figure out why Ethan is working so hard to breathe. Otherwise, Ethan is doing great!

Todays is Heather's Grandmothers's birthday. Happy birthday Grammy!!!!

(Todd & Heather) Today, Ethan took another 3cc of Portagen orally. He seemed to take the bottle well. How exciting!!! The occupational therapist was very pleased. We can't wait to try again tomorrow!
We spoke with the surgeon again today and he said that Ethan will be home by the end of next week. Not home meaning Sutter in Sacramento, but home at our house!!! WOW!!!! He will be coming home with his feeding tube and possibly his oxygen. More than likely he'll be fed mom's milk through his feeding tube when he gets home. And he'll possibly be breast feeding in addition to his tube feedings. Soon, Heather and I will be shown how to take care of Ethan while on his feeding tube.
Ethan will be moved "upstairs" within a couple days before he is discharged from the hospital. But for now, we are still on the 2nd floor in the CVICU(cardiovascular intensive care unit).
Heathers parents and siblings came to visit again today. Auntie Shana was finally able to hold Ethan for the first time!!!
Ethan's health continues to progress. He shows no signs or symptoms of any heart problems. His X-rays, echo's, and EKG's confirm it! I can't believe we will have Ethan home for Thanksgiving, as we have a lot to be thankful for!!
Don't forget to check today's pics!!! Click Here!!!

(Todd & Heather) Ethan has been sleeping a very well lately. He appears to be very comfortable. He is being fed 13cc per hour of the Portagen. More calories have been added to his diet to try and help him gain some weight. Ethan did not gain any weight since yesterday.
Occupational Therapy will be coming by every day at 4pm to help with oral feeding. Today he he took about 3cc from a bottle. He tired out pretty quick. He's not used to feeding from the bottle just yet. But we'll get him there.
Ethan still needs a little help with oxygen when he's sleeping. You'll notice in todays pics that an oxygen mask is laying next to him in his bed. If his oxygen saturation levels drop, we can move the mask closer to his face so he can get the oxygen. His saturation levels go up immediately.
There was talk of Ethan moving "upstairs" today but it did not happen. It may happen tomorrow. The doctors aren't in any hurry to move him. If it's not an emergency, they get around to it when they get around to it. ;)


(Todd) Ethan continues to do well. Since he's been off of the oxygen, his oxygen saturation levels dip a little bit....usually when he's sleeping or resting. Positioning an oxygen mask near his face brings his saturation levels up immediately. And then he'll be fine for the most part. Although sometimes it seems that he is just in a deep rest when his saturation levels drop and we can simply prop Ethan in a more upright position or simply pick him up and his saturation levels go back up again. It's really not much of an issue at this point, and we'll probably see this issue disappear the more he is growing.
Speaking of growing, Ethan gained 20 grams in the last 24 hours. He's almost back up to his birth weight. His original birth weight is 2043 grams(about 4 lbs 8 oz). Today he is 2002 grams. At one point he was as small as 4 pounds. So, he's doing pretty good in the growth department. Heather and I will try and update his weight as often as possible. The more we see an upward trend in weight, the sooner Ethan will be home.
His heart rate, blood pressure, breathing, and core body temperature continue to be stable! Way to go little buddy!!!
Ethan had a few more visitors today. Heather's siblings, mom, and grandparents came down today. We were able to get a few pics of them with Ethan today.


(Heather) Ethan had another AWESOME day!! He is still breathing on his own, oxygen saturation levels are were they need to be. His blood pressure and heart rate have been great too! His heart rate seems a little high, but the doctors aren't concerned about it. Ethan does not show any signs of uncomfort or stress. The smaller the baby, the higher the heart rate.
.He is such a strong little guy! He even rolled himself over today. I don't think he knows he is only a month old! I was able to hold him in the upright position today for the first time. We had to allow his chest to heal for a while before laying directly on it. Ethan was not too impressed with that position, but I am sure it will just take time to get used to. Ethan's feeds have been increased to 13cc's per hour and is handling this well. Hopefully he will be on Portagen for only a few more days, and then on my milk. Docs just want to make sure the fluids are cleared up before we can start mamma's milk again.
Ethan had quite a few visitors today. Friends Melissa and Nick came to visit. Later in the evening Auntie Denise and friend Trudi came to visit as well. We had a lot of fun!

Click here for todays pics!

(Todd & Heather) Heather and I made it to the hospital today just in time to watch Ethan have his oxygen tube removed! The oxygen was turned off for a few hours before they actually removed the tubes. Since Ethan was able to keep his oxygen saturation levels up, they freed him from one more tube/cable. AND Ethan's arterial line from his right arm was removed(the one used to monitor his blood pressure). Now both of his hands are free! He's looking more and more like a "normal" baby more than ever.
He only has the "pic" line and feeding tube. You'll proly notice the purple wires, but those are just there to monitor his heart rate. Oh, and they put a cuff on his leg to monitor his blood pressure. It's similar to a cuff used on an adults arm to measure blood pressure.
Ethan has a new nurse every 12 hours and since yesterday, each nurse has said, "Have you heard that Ethan may be moving to the 3rd floor on Monday?". So I'm guessing Ethan may be moving to the 3rd floor on Monday. But I'm just guessing. ;)
Ethan's X-rays continue to look good! There is very little fluid in his chest if any. The doctor is not too concerned with the fluids. He said that the fluids will eventually dry up on their own, or at least they should.
Ethan's heart rate is a little on the high side, but nothing to be really concerned about. His blood pressure continues to be solid. He also continues to hold his own core body temperature.
Don't forget to check out today's pics! :D
One more thing....tomorrow is Heather's Mom's birthday(11/8)!

Happy Birthday Katie!!!

(Todd & Heather) Ethan moved into his "big boy" bed today! Now there is room for his bouncy seat...which Heather's parents brought today.
The fluids in Ethan's chest have pretty much dried up! So, his chest tube was removed! He'll continue to get X-rays every morning to watch his chest from collecting fluids again. The doctor is pleased with Ethan's progress and believes he'll do much better without the tubes and wires in him. You'll notice in Ethan's pictures, he has a splint on his right arm. He has a catheter in his arm to monitor his blood pressure. The splint is there to help keep the catheter in his arm. Ethan's blood pressure has been pretty solid for a couple weeks and that catheter should come out tomorrow! The only line he'll have left in him is what's called a "pic" line. It's a central line used for administering his medications. The medication that's being used to help dry up the fluids will be discontinued very soon.....assuming the fluids are actually drying up.
The doctor also mentioned that Ethan may be moving "upstairs" Monday. Which is the 3rd floor cardiac ward! This will be another graduation for him! It isn't for sure yet, but it is a sign Ethan is recovering well.
So for now, the main concern is nutrition. Once Ethan is feeding from a bottle and/or from Heather on his own and is showing trend of steady weight gain, he'll be transferred to Sutter Hospital in Sacramento to continue his occupational therapy. There is a slim chance he may be back in Sacramento by Thanksgiving, but it's not for sure. We'll be taking it one day at a time.
Heather's parents came down to visit! They were able to bring his bouncy seat so he can sit up and look around. He seemed to enjoy it.
Be sure to check out today's pics! Enjoy!

(Todd & Heather) Another good day for Ethan! He seems to be sleeping a lot better than usual. I think he's been more comfortable.
He's being fed as much as he can be fed for his size(4 pounds). He's taking the food very well and has the diapers to prove it.
Occupational Therapy came by again today. Ethan is beginning to take the bottle. He's not necessarily taking the milk on his own yet. He suckles a little bit and then slowly swallows the milk. And he can't really suckle too long without getting too tired. We just have to build up his endurance so he's comfortably drinking the amount he needs to grow. We'll try again tomorrow and see how he does.
Ethan's fluids seem to have come to a stand still.....almost! He was losing fluids at about 150cc per day! In the last 24 hours, he's only lost about 10cc!!!! Absolutely amazing!! Tomorrow, there's a good chance that the chest tube may be removed from his chest permanently! Whoop! This should be the last of Ethan's major hurdles to recovery. It's all nourishment after that! He's still being given a little oxygen and is still on his heart medication, but we believe these things will correct themselves after Ethan is healthy. We gotta bulk him up! He'll be weighed daily to monitor his progress.
Yesterday, Physical Therapy suggested we try putting Ethan in a "bouncy chair" soon. Ethan is in a small bed and a chair will not fit, so he may be moved into a bigger crib so that it can accommodate the "bouncy chair".
Ethan never ceases to amaze us. Keep up the good work little buddy!

(Todd & Heather) Ethan moved rooms today. He was moved to a room that is much more quiet. His former roommate was having a hard time and was extremely vocal. Ethan had a hard time relaxing. He's able to sleep a little better now.
Occupational Therapy came by to help Ethan feed with a bottle. However he was a little uncooperative. He was soooo tired and decided he'd rather sleep. We will be trying to get him to feed with a bottle a little each day.
Physical Therapy came by again today to help Ethan stretch his limbs. He looked like he was having a good time. He didn't complain once. They suggested we try and put him in a more upright position with a "bouncy chair". We will try that soon and see how he likes it.
Ethan is maxed out on his protein intake right now so they decided to increase his calories today. It was a little much for him at first. He vomited a couple times but was able to take it well later in the day.
The fluids in Ethans chest seem to be draining a lot less! We're not sure how much longer it will be before the fluids stop completely, but it's definitely slowing down. As long as it's slowing, the doctors won't have to perform surgery to close those ducts.
You'll notice from today's pics that Ethan is taking his "binky" fairly well. We're now able to calm him down when he's a little upset. It's a little difficult sometimes to get it in his mouth, but once it's in there, he starts suckling.
Good job Ethan! Another great day!

(Todd & Heather) Physical Therapy came by today to help Ethan with some stretching. He is in his bed in the fetal position most of the day and they wanted to make sure Ethan's arms and legs aren't getting too stiff. So they came by and extended his arms and legs for a bit.
He did very well most of the day with his chest tube out. However, by the end of the day today, it was obvious he was starting to work a little harder to breathe. The docs did an X-ray this evening and saw some fluids, so they re-inserted the chest tube and drained his chest. This time they left the chest tube in. We could see right away that Ethan looked much more comfortable.
Ethan is no longer taking his Digoxin through an IV, He now receives it orally. He continues to do well with his 12cc an hour of Portagen, even though he did vomit a couple of times today.
Heathers parents(Kokee & Papa) came down this evening to visit. Be sure to check todays pics!

Mommy and Daddy are proud of you Ethan! We are amazed with your strength and spunk. Keep fighting! We love you!

(Todd & Heather) Ethan didn't have too many problems through the night. However, this morning, he did have an episode or two where his heart would beat irregularly. Since the chest tube came out, the hole closed up and some fluids were retained in his chest. The doctors were pretty sure it was the fluids in his chest that caused his irregular heart beat. To be safe, they put him back on his Digoxin to help regulate his heart. They left the fluids in his chest until about 4pm. Throughout the morning he didn't look to be in any stress with him retaining the fluids. As the day went on, the fluids in his chest were constricting his lungs and they were not able to fully expand. It was visible that Ethan was wearing himself out breathing. Before it got any worse, they inserted a chest tube to remove the fluids. But they did not leave the chest tube in. They removed about 32cc of fluids(about an ounce), removed the tube, and closed the hole. It was immediately noticeable that Ethan was no longer working too hard to breath. He was much more alert and relaxed. Ethans been receiving medication to help "dry up" the fluids in his chest. So, for now, the doctor is leaving the chest tube out to see if Ethan can absorb and/or drain the fluids himself. As of 11pm tonight, he has been doing extremely well. He will have X-rays a couple of times a day to watch for fluids in his chest. The fluids accumulate so slowly that there will be noticeable symptoms well ahead of time for the doctors to insert another tube to relieve his chest of the fluids.
Ethan is up to a rate of 12cc per hour of the Portagen. He did vomit once early this morning but was ok. We were seeing signs of withdrawals of the morphine, and vomiting is one of those symptoms. The other signs are the shivers or shakes and sneezing. And we've seen him do all of the above. But he's not showing these symptoms on a constant basis. We've seen him do one or 2 of those things once throughout the entire day. Ethan is not in any kind of stress or discomfort.
Heather was able to hold Ethan again tonight. You'll be able to see from todays pics. Enjoy!

(Todd & Heather) Well, we had a few more steps forward today! Ethan is no longer on Digoxin, the medication to regulate his heart rate. His heart is fine on it's own! Whoop whoop! He has also discontinued his regular doses of morphine and he's been looking very comfortable. He doesn't look to be stressed from any noticeable pain.
Ethan was on TPN which provided most of his nutrients but is no longer taking it. Since his rate of Portagen has increased, he's been getting the nutrition he needs. (The Portagen is givin through the feeding tube in his stomach while the TPN was givin through an IV).
Ethan had an IV in his left arm which was recently taken out because it was leaking. His arm had a little brace which kept his arm from bending and not interrupting the IV. However he managed to bend his no more IV. The IV was used to give him blood whenever necessary. But he no longer has any lines that can take blood and the doctors decided not to add another IV in his arm since he's been doing so well. They will add another IV if they need to.
Not only did his IV come out a little early, but his chest tube "slipped" out too! Heather and I were very concerned about it at first but the nurse and doctor reassured us that Ethan would be ok without the tube for now.
Early this morning(about 12:30am), the nurse noticed that Ethan's bed was wet. She thought that he just wet the bed, but then noticed his chest tube was not in his chest. She immediately informed the doctor, but he did not have the chest tube put back in. Since his fluids have decreased over the last day or so, and he didn't look to be in any kind of immediate stress, they decided to just cover the hole with a dressing. It can keep the hole open and the dressing will absorb some of the fluids, while the rest of the fluids may leak out of the dressing and into his bed. They change the dressing every couple hours and weigh the cloth and dressing to measure the fluids. Ethan has been having Xrays every so often today to look for any fluids building up in his chest. But, so far, most of the fluids are draining and there is very little in his chest....which is great! It's been 24 hours since the tube slipped out and he is still without the chest tube. The doctors will call us if the tube needs to be put back in his chest. If the tube is put back in, Ethan will be givin morphine and a local anesthetic around the hole in his chest. According to the doctor, its a very easy and a fairly harmless procedure. Hopefully Ethans fluids will decrease enough to not have to put the chest tube back in. But if it has to be done, there shouldn't be anything to worry about.
Ethan had a few visitors today! Heathers parents, siblings, and friends!
Don't forget to check todays pics!

(Todd & Heather) Happy first Halloween Ethan! We can't wait to take ya trick or treating!!
Ethan has finally been getting some rest! As you can see from todays pics....there aren't many. He's been eating(tube feeding) and sleeping all day. Usually we like to tickle and talk to him but we didn't want to wake him much today. Hopefully he'll be very awake tomorrow so we can hold him more.
We met with the doctors today and had a "parent conference" to discuss the gameplan. Ethan's fluids have noticeably decreased today! However, it's only one day. We've seen this before, but hopefully THIS is a sign he's finally starting to heal. Ethan has not had any morphine for 2 days! He's been a lil trooper. He's also being givin 10cc per hour of the Portagen....10 times the rate yesterday morning. He's been taking it well and proving it by leaving surprises in his diapers.
Ethan's doctors believe he can be transferred to Sutter in Sacramento in 3 to 4 weeks, as long as his health continues to progress. After Ethan has fully recovered from his surgery, he will still be underweight and will require therapy to ensure proper growth. We can't say for sure when he'll actually be home with us, but it will be awesome to have him that much closer to home. The doctors are pleased with his progress as are we! Good job Ethan!
In todays pics, you'll also see a link for a short video of Ethan. I'll try and get some better videos tomorrow. Hope you enjoy!

(Todd & Heather) Ethan graduated today! He's been sharing a large room for patients that come out of the operating room. He's been moved to an adjacent room for patients that have been progressing. Woohoo!
His heart rate, blood pressure, oxygen saturation, and breaths per minute continue to be stable. However his fluids continue to drain from his chest at a steady rate. Hopefully we will see the fluds slow soon. His feeding has been increased, which may have something to do with the different color of his fluids. He was on 1cc of Portagen an hour. Today it has been increased 1 cc every hour for 12 hours. So far he's taking it well. Maybe the additional feeding will give his body the necessary strength to close his draining ducts. Only time will tell.
He's very alert and is constantly looking around, wondering when the next "poke" is coming. He sleeps with one eye open. ;) He still doesn't have a voice, however we hear a small squeak now and then. He had a few visitors today. Kokee, Papa(Heathers parents) and Grammy Booker came down for a few hours to visit. They were able to hold him for their first time!! Check todays pics!

(Todd) Well, today was another good day. You'll probably have noticed that this "News" section starts back on the 26th.......the day we started to notice a promissing, upward trend in Ethan's health. Up until the 26th, Ethans health was an up and down rollercoster(but for the most part, good). We've had 4 straight days of forward progress, but I can't say that Ethan is only going to get well from here on out. Prior to the 26th, I didn't have the energy, nor the creativity to even think about building this site. But now that I've started, I won't stop. I just don't want family and friends to be confused if Ethan has a not-so-great day.
Ethan still has a tube in his chest that continues to drain fluids at a steady rate. The fluid that drains after surgery is normal, however, the draining should be slowing down. It's just a waiting game right now, constantly replacing fluids that are being lost. Ethan is tolerating the fluids draining and being replaced as can be seen in the pictures. But there is a chance that he may have to have surgery again to have the ducts close that aren't closing themselves. We just don't want him to have to "go under" again for surgery. If so, he will have to be "intubated" (on ventilation) again. So it will be a small set back. They will not re-open his chest, but will go in from his side under his arm. Ugh! Ethan has been working so hard to get where he is now. We don't want him going through it again. Please pray for Ethan, that the fluids from his chest subside.
OK, I'm sorry for the bad news first, but I want to end this post on a good note. Ethan IS doing great today! He had his stitches removed! He also had a yellow tube put in his nose and down to his stomach so he can continue the feeding of Portigen. He's not yet back on mom's milk yet. So his little mouth is tube free! Woohoo!
You can probably see from some of his pictures that he is crying....but not outloud. He doesn't have his voice yet. When he crys, we just here little hissing sounds. It sooo cute. Heather and I can't wait to here is little voice. The breathing tubes that were in his throat seperates the vocal chords and it takes a few days for his vocal chords to heal. So for now, we'll enjoy the silence. :)
Heather and I were able to hold Ethan again! Take a look at todays pics! You'll also notice that Heather's good friend Melissa came down for a visit and was able to hold Ethan as well!!!
I know not everyone can come all the way to Stanford to visit, so hopefully this site helps you feel closer than you are. : ). Heather and I can't thank you all enough for praying for our son! It always puts a smile on our faces to look at the "Guestbook" and see who's visited this site. Thank you all soooo much!

All our love,
Todd, Heather, and baby Ethan

(Heather)Today was another AWESOME day!! Ethan's heart rate continues to stay stable.Ethan is breathing well over the ventilator, so the docs decided to extibate(take him off the ventilator)! They took him off around 2pm this afternoon and he is doing well without it! As you can see in today's pictures there is still a little oxygen tube in his nose, but it is supplying very little to him! This is soo exciting, we get to see his whole mouth!
Yesterday I held Ethan over his bed just for a second, but today with out the ventilator in his mouth I was able to hold him in my arms! What an AWESOME feeling!! I was able to hold my son for the first time in his life! I had been trying to be sooo patient, waiting and praying this day would come, when I would finally hold my baby boy!! I love you Ethan!!

(Todd)Heather holds Ethan for the first time! Check todays pics!!
Another good day! Ethan looks very comfortable. He is holding his body temperature very well. I'm excited to say that he is able to relieve himself regularly. I never thought I'd be excited about something like this :)
He WAS being fed mom's milk with a feeding tube in his mouth directly into his stomach. However, it was causing his body to produce more fluids from his chest tube. Sooo, they are feeding him a supplement called Portigen which is already broken down for him. It will take a little time before he can take mom's milk again. He's also being givin TPN(total parenteral nutrition) for all his vitamins and minerals.
Ethan is still on a ventilator, but not necessarily because he needs it. They don't want him working too hard right now and are slowly wheening him off the ventilator. They also want to make sure his breaths alone are able to provide the necessary oxygen in his blood. It gives him X number of breaths per minute. Right now the ventilator is giving him 26 breaths per minute and Ethan breathes another 10 to 30 on top of that. So he's getting 26+ breaths per minute. He should be off the ventilator when the ventilator is down to 12 breathes.
He's still on a little morphine every now and then, depending on the amount of pain he looks like he's in.
He's also on Digoxin, a medication that helps strengthen the heart muscle, enabling it to pump more efficiently. It has helped keep his heart regular.

(Todd)Ethan had a good day today. His heart rate has been very irregular the last couple days but today he's much better. Heart rate is stable, blood pressure is up, and his color is a lot better too. Hopefully we have more days like this.



Site Updates
The website format has changed a little and we've added a few different pages. Feel free to check'm out!

His Heart

Truncus: What is it? Click here!

Interrupted Aortic Arch and VSD?
Click here!

Our Hotel
No more hotel.....we're home! :D