Busy couple of days around here! Took Eli to our local hospital to be set up with a Holter monitor Wednesday morning. He screamed when they put it on him. It doesn't hurt, it's just stickers on his chest, but I swear he has "flashbacks" to his hospitalizations and he knew he didn't want those on him. Once he had a shirt covering them up he was fine. He spent the next 24 hours with a trail of wires coming out of his clothes attached to a recording device (about the size of a small cell phone). It was like a tail. Overall he did really well with it, much better than I had anticipated, but it was still stressful. If he saw the wires on his chest he would frantically start pulling at anything he could grab (wires, feeding tube, etc) so if he had to have his clothes changed it needed done very quickly!
Thursday morning, a little over the 24 hour mark (we're overachievers!), I took the unit and stickers off of him. I thought he might do better with just me doing it instead of strangers at the hospital. He still cried and fought me but it was over pretty quickly. When we returned it to the hospital they reviewed the recording to make sure it was good enough and then it was processed and sent to our doctors.
Today Eli & I went to Evansville (what a madhouse! You'd think it was the only mall for miles & miles around. Oh, wait...). Eli was fine when we got there but turned on his screamer when they tried to do crazy things to him, like weigh him, take his blood pressure, and O2 saturation. Heaven forbid they try to listen to his heart with a stethoscope. We also had to do an EKG. He turned into a double octopus on crack. We didn't give up and finally got what we needed (mostly).
Dr. Steinberg was very pleased with Eli's progress and weight gain, and asked several questions about his activity level, sleeping habits and overall health & attitude. He had reviewed the reports from the Holter monitor & the EKG; they showed that Eli's average heart rate is 71, much lower than that of a normal 13 month old, and his rhythm is still junctional. Everyone agrees that if he was going to return to a normal rhythm on his own it would have happened by now. He needs a pacemaker.
The good news is that because he is doing so well, we can wait longer before doing it. Dr. Steinberg thinks we could possibly wait until Eli's third surgery and do both at the same time. If he starts having trouble gaining weight, is easily agitated (without medical personnel bothering him), or just has general problems, then we'll re-evaluate. For now the plan is to see Dr. Kumbar at the end of February to do an echo (ultrasound of the heart and its vessels) and then back in June to see Dr. Steinberg again. We'll probably get to repeat the Holter monitor prior to that visit as well (oh joy of joys!).
At that point we'll begin discussion about a heart catheterization prior to his third surgery. That surgery is called a Fontane completion. The surgery he just had in September is called a Hemi-Fontane (the two are essentially the same surgery but it's too much to do at one time so it's done in two stages). If given the chance to schedule, they don't like to schedule the Fontane procedures in the winter months because of the increased risk of respiratory complications. After today's appointment it looks like Eli could have his Fontane completion by the fall of 2012. Nothing is set and we'll have to see what happens over the next few months. Of course if Eli's condition changes, they can always proceed with the pacemaker.
So, our expected news is that, yes, he needs a pacemaker. Our good news is that we don't have to do a pacemaker as soon as we were anticipating. Our not so good news is that his third surgery may be sooner than we were thinking (we were hoping for 18-24 months after the second one, which would have been summer 2013-ish). That isn't a huge deal, I suppose, but it seems like 2011 was filled with major surgeries, procedures, & really heavy stuff. I guess I was hoping for a little "time off" before the final stage. We know he has to have it done, so in the long run, when it happens doesn't make a big difference. As long as he's growing and functioning well, we're happy.
Overall today was a very good visit. I had fully expected to leave there with a date set for pacemaker placement so to find out that can wait indefinitely was very uplifting. Dr. Steinberg said something very nice and encouraging as we were leaving..."Keep up the good work." Dr. Amy says that to us a lot too. Eli does all the hard work, but it does feel good when the efforts Bryan & I put in are acknowledged. We're just so happy that he's here to keep us up at night, drool on our furniture, and torment our dog! We're very blessed indeed.
Thanks for checking in! I'll get another post up about our Christmas festivities, but until then we'll continue to cherish Every Little Beat...
MERRY CHRISTMAS!
Friday, December 16, 2011
Monday, December 12, 2011
~It's Beginning to Look a Lot Like Christmas!~
Merry Christmas! The Christmas Spirit is starting to work its way through the Veale house! We've gotten a lot done, but as usual, there's still a lot to do. We made cookies this weekend (a lot, I haven't even counted!). Zachary loves to decorate a cookie then eat it before the icing is dry. His version of "helping" is definitely that of a 4 year old!
Bryan and I got an early Christmas present for ourselves. We got a new dining room table & chairs. The set we had was given as a wedding gift and it was used long before that. The chairs were coming apart and it was getting scary to sit in any of them so we splurged & got some new pieces. WE LOVE IT! I'm posting some pictures later in this blog but I won't have any of the table this time because it's too covered with cookies & other half-finished Christmas projects. Definitely will get some up later because I want to brag about it :)
I'm working on getting our Christmas cards out. That's a big job, but I do love sending and receiving them :) Zachary's helped wrap a lot of presents and we've got them under our trees. Yes, I wrote trees, plural. We were pretty sure Eli would pull down our big one that we normally put in the living room so we bought a small, pre-lit white one and put it on a table. We put a bigger one up in the dining room and he hasn't found it yet. That's where the gifts for the four of us will go and gifts for extended family go with the living room tree. So far he's left things alone but, frankly, I don't trust him.
Eli has been very busy cutting teeth. His top front four are all in and he's working on molars now. He had several nights of fighting sleep for several hours, but that's starting to improve. Cutting those teeth has been hard on his body: He's had loose stools, a runny nose, a cough, both ears are red and he just generally doesn't feel well. Despite all that he's playing well and has mastered crawling in the past week. His appetite has fluctuated as he hasn't felt well but he's trying lots of new foods and overall doing very well. He's definintely on the mend now. At his check up last week he weighed 20lbs 12oz. When we're holding him on a sleepless night he feels like he weighs 45lbs!
Zachary has written his letter to Santa and his big wish this year is for Imaginext Dinosaurs. Go figure, the kid wants dinosaurs. I tried to explain Santa's naughty & nice list to him and I think he "gets it." Occasionally he'll ask me which list he's on that day. So far it's been nice all the way! Even more important than Santa, he's really into the fact that Christmas is the celebration of Jesus being born. I love hearing him say "Bethlehem," "frankencense," "gold," and "myrh." Bryan & I can't believe that Christmas decorations are enough for Jesus' birthday. We're still figuring that Jesus will need a dinosaur party and we'll have to incorporate that with our trees, but for now that idea hasn't occured to Zachary. There's still time!
We go to see two of Eli's cardiologists this Friday. At that appointment there will be more discussion regarding a pacemaker. As we've said before, we're not going to stress over this. It's something that will help him and at least we have an option for this problem. We'll save our big worries for the problems that don't have any options. I'll post again sometime after that appointment to let you know what we find out.
The four of us went to Washington's Christmas Parade yesterday. We think it was Eli's first parade. It was a good day for it, temps in the low 40's and it wasn't windy at all. We had Eli bundled up like Randy from "A Christmas Story" but it's hard to keep those cheeks covered! Zachary was nuts with excitement and we all had a good time. When we got home we started decorating some of the cookies we'd baked the day before.
We hope all of you are enjoying the Christmas season and thanks for reading!
Bryan and I got an early Christmas present for ourselves. We got a new dining room table & chairs. The set we had was given as a wedding gift and it was used long before that. The chairs were coming apart and it was getting scary to sit in any of them so we splurged & got some new pieces. WE LOVE IT! I'm posting some pictures later in this blog but I won't have any of the table this time because it's too covered with cookies & other half-finished Christmas projects. Definitely will get some up later because I want to brag about it :)
I'm working on getting our Christmas cards out. That's a big job, but I do love sending and receiving them :) Zachary's helped wrap a lot of presents and we've got them under our trees. Yes, I wrote trees, plural. We were pretty sure Eli would pull down our big one that we normally put in the living room so we bought a small, pre-lit white one and put it on a table. We put a bigger one up in the dining room and he hasn't found it yet. That's where the gifts for the four of us will go and gifts for extended family go with the living room tree. So far he's left things alone but, frankly, I don't trust him.
Eli has been very busy cutting teeth. His top front four are all in and he's working on molars now. He had several nights of fighting sleep for several hours, but that's starting to improve. Cutting those teeth has been hard on his body: He's had loose stools, a runny nose, a cough, both ears are red and he just generally doesn't feel well. Despite all that he's playing well and has mastered crawling in the past week. His appetite has fluctuated as he hasn't felt well but he's trying lots of new foods and overall doing very well. He's definintely on the mend now. At his check up last week he weighed 20lbs 12oz. When we're holding him on a sleepless night he feels like he weighs 45lbs!
Zachary has written his letter to Santa and his big wish this year is for Imaginext Dinosaurs. Go figure, the kid wants dinosaurs. I tried to explain Santa's naughty & nice list to him and I think he "gets it." Occasionally he'll ask me which list he's on that day. So far it's been nice all the way! Even more important than Santa, he's really into the fact that Christmas is the celebration of Jesus being born. I love hearing him say "Bethlehem," "frankencense," "gold," and "myrh." Bryan & I can't believe that Christmas decorations are enough for Jesus' birthday. We're still figuring that Jesus will need a dinosaur party and we'll have to incorporate that with our trees, but for now that idea hasn't occured to Zachary. There's still time!
We go to see two of Eli's cardiologists this Friday. At that appointment there will be more discussion regarding a pacemaker. As we've said before, we're not going to stress over this. It's something that will help him and at least we have an option for this problem. We'll save our big worries for the problems that don't have any options. I'll post again sometime after that appointment to let you know what we find out.
The four of us went to Washington's Christmas Parade yesterday. We think it was Eli's first parade. It was a good day for it, temps in the low 40's and it wasn't windy at all. We had Eli bundled up like Randy from "A Christmas Story" but it's hard to keep those cheeks covered! Zachary was nuts with excitement and we all had a good time. When we got home we started decorating some of the cookies we'd baked the day before.
~It's beginning to look a lot like Christmas!~
We hope all of you are enjoying the Christmas season and thanks for reading!
Our new tree in the living room.
Albert completing his annual "present sniff"
Our dining room tree
Some of the cookies we baked and decorated this weekend.
Waiting for the parade to start. I promise both boys had fun, Eli just didn't want to sit on the sidewalk for a picture!
Mommy & Eli waiting for the parade to start
Daddy & Eli all snuggled up
Excitedly waiting for candy
Part of Zachary's "The Parade's About to Start!" dance
Just in time for Christmas, Eli has become a pot & pan drummer
Some of Eli's crawling skills
Mamaw Betty helping Zachary write his letter to Santa
Zachary & Eli played in a laundry basket for about 45 minutes the other day. The basket was a boat, a train, then a boat-train. Eli had a blast with the special attention Zachary was giving him.
Thursday, November 17, 2011
I Thought I Could!
I just KNEW if I played around enough I could find a way to make our blog look better and I did it! Hopefully I'll remember how I did this so that it can be changed periodically ;) Thanks for reading and keeping up with our crazy life!
Tuesday, November 15, 2011
So Many Things....
Wow, it's not been that long since I've written but we have a lot of updates to give!
First of all, back in September while Eli was still in the hospital, we got some great news from Bryan's sister that she & her husband are expecting their first child! We're so excited for them! This will be our first chance to be aunt & uncle to a little one (my sister's almost step-child no longer counts since he's 15 & won't let me swaddle him anymore...Love you, Aaron!). Last week Cara & Andrew had an ultrasound and now we know the baby's gender and, much more importantly, that the baby's heart is okay. Because of Eli's condition her doctor wanted to do a more in-depth ultrasound for the baby and so far all looks good :) We are so relieved and excited.
Next bit of news, at my yearly physical I had several things to discuss with Dr. Amy. One item was some shoulder & neck discomfort that goes down into my chest and left arm. Yes, I realize that sounds like a heart attack, but seriously I can tell it's just tight muscles, however when I'm stressed out all the time and let my mind wander I get a little freaked out about it. Given our family's history Dr. Amy said I should have an echocardiogram (ultrasound to check the structures of the heart). I had it done and a few days later we got the news that everything was normal. I honestly wasn't too worried about it until it was done and we were waiting for the results. I wasn't even worried about me, but what would happen to my guys if something happened to me? Realizing I'm mortal put a damper on my mood.
Then...
At Zachary's 4 year check up, his heart murmur was still pretty loud when she listened to him. He'd had an echo done at birth, when his murmur was discovered, but he SCREAMED through the entire thing so we're not sure how accurate the findings really were. For most four-year olds this isn't a major concern, but Zachary has a brother with some pretty serious cardiac problems so, to be on the safe side, we had another echocardiogram done. Now this time I was extremely worried. What if Zachary had something seriously wrong with his heart too? How much could we really handle? You can imagine all the questions & fears we had. As most of you know, I use this blog & Facebook and am pretty open & detailed about our issues, but for some reason I didn't put any of this info out until we knew more. Now, many prayers later, we have the results: normal. THANK YOU, GOD!
Next on my list is my wrist. Several years ago I had what's called a ganglion cyst removed from my right wrist. I have one on the left wrist as well but it doesn't bother me much. The one on my right wrist got pretty big and made my hand, wrist & arm sore. It wasn't a sharp pain or anything like that, but it ached a lot and made detailed tasks difficult (holding a pencil, writing, buttons, typing, etc). I had it removed nine years ago. Since then it's slowly grown back and is now bothering me a lot. It isn't as bad as it was before but I don't want to let it get to that point. I went back to the orthopaedic doctor last week and they ordered an MRI. I had that done today and it confirmed that it is another ganglion cyst in the same spot as the one removed nine years ago. They explained today that there was a 1% chance of that happening in the same place. What do you know, I made the top percent in something! I just laughed and told them that's the kind of year it's been for our family.
The MRI also shows the cyst is very deep and putting a lot of pressure on my carpal bones (wrist bones) which explains the discomfort I've been having without seeing the large lump on the back of my wrist that was there before. The only option is surgery again. I'm not concerned about the surgery itself but the recovery kind of sucks. I know it sounds like a simple cyst and what's the big deal, right? The surgery involves a lot of manipulation of the bones to try & get all of it out. The last time I had a weight restriction and physical therapy for several weeks after surgery. I had a desk job and no kids or dog to take care of back then, so you can see why I'm getting stressed now. Even typing is getting difficult. I've taken four breaks typing this and that's been over several hours. I guess I'll have the surgery after Christmas, Bryan's got some time off & his sister Kendra will be home from college and can help with the boys. I'm not happy about this and will probably try to change my mind several times, but I know it won't be long until I start dropping things again because I can't get my hand to work right.
Our bright news is that we're all actually doing really well. Zachary LOVES preschool and has a Thanksgiving program & dinner next Tuesday that we're really excited about. Eli is growing well, his last weight check was 20lbs 8oz! He is starting to put a lot of weight on his legs when we stand him up and is so close to crawling that Albert has his suitcase packed & is ready to go (to explain: Eli loves Albert and Albert loves Eli, but Eli's love for Albert is usually shown in a pinch or slap. Albert is wonderful with him, but is not comfortable with this new mobility Eli is experiencing since he remembers what was like with Zachary).
A side note, I have no idea what I've done to make this look so different from my other posts. I'm too tired to mess with it any longer. I'm not very computer savy and I think this is a prime example. Other blogs I read have really cool backgrounds and banners and other things I like, but I have NO idea how to do that so for now we're all stuck with the boring look until I stumble upon a way to look like the cool kids!
We have so much to be thankful for this year and I just want to take this chance to thank all of you who take the time to read about our family. Your care, concern, prayers, comments, etc means a lot to us and we are thankful for all of you.
First of all, back in September while Eli was still in the hospital, we got some great news from Bryan's sister that she & her husband are expecting their first child! We're so excited for them! This will be our first chance to be aunt & uncle to a little one (my sister's almost step-child no longer counts since he's 15 & won't let me swaddle him anymore...Love you, Aaron!). Last week Cara & Andrew had an ultrasound and now we know the baby's gender and, much more importantly, that the baby's heart is okay. Because of Eli's condition her doctor wanted to do a more in-depth ultrasound for the baby and so far all looks good :) We are so relieved and excited.
Next bit of news, at my yearly physical I had several things to discuss with Dr. Amy. One item was some shoulder & neck discomfort that goes down into my chest and left arm. Yes, I realize that sounds like a heart attack, but seriously I can tell it's just tight muscles, however when I'm stressed out all the time and let my mind wander I get a little freaked out about it. Given our family's history Dr. Amy said I should have an echocardiogram (ultrasound to check the structures of the heart). I had it done and a few days later we got the news that everything was normal. I honestly wasn't too worried about it until it was done and we were waiting for the results. I wasn't even worried about me, but what would happen to my guys if something happened to me? Realizing I'm mortal put a damper on my mood.
Then...
At Zachary's 4 year check up, his heart murmur was still pretty loud when she listened to him. He'd had an echo done at birth, when his murmur was discovered, but he SCREAMED through the entire thing so we're not sure how accurate the findings really were. For most four-year olds this isn't a major concern, but Zachary has a brother with some pretty serious cardiac problems so, to be on the safe side, we had another echocardiogram done. Now this time I was extremely worried. What if Zachary had something seriously wrong with his heart too? How much could we really handle? You can imagine all the questions & fears we had. As most of you know, I use this blog & Facebook and am pretty open & detailed about our issues, but for some reason I didn't put any of this info out until we knew more. Now, many prayers later, we have the results: normal. THANK YOU, GOD!
Next on my list is my wrist. Several years ago I had what's called a ganglion cyst removed from my right wrist. I have one on the left wrist as well but it doesn't bother me much. The one on my right wrist got pretty big and made my hand, wrist & arm sore. It wasn't a sharp pain or anything like that, but it ached a lot and made detailed tasks difficult (holding a pencil, writing, buttons, typing, etc). I had it removed nine years ago. Since then it's slowly grown back and is now bothering me a lot. It isn't as bad as it was before but I don't want to let it get to that point. I went back to the orthopaedic doctor last week and they ordered an MRI. I had that done today and it confirmed that it is another ganglion cyst in the same spot as the one removed nine years ago. They explained today that there was a 1% chance of that happening in the same place. What do you know, I made the top percent in something! I just laughed and told them that's the kind of year it's been for our family.
The MRI also shows the cyst is very deep and putting a lot of pressure on my carpal bones (wrist bones) which explains the discomfort I've been having without seeing the large lump on the back of my wrist that was there before. The only option is surgery again. I'm not concerned about the surgery itself but the recovery kind of sucks. I know it sounds like a simple cyst and what's the big deal, right? The surgery involves a lot of manipulation of the bones to try & get all of it out. The last time I had a weight restriction and physical therapy for several weeks after surgery. I had a desk job and no kids or dog to take care of back then, so you can see why I'm getting stressed now. Even typing is getting difficult. I've taken four breaks typing this and that's been over several hours. I guess I'll have the surgery after Christmas, Bryan's got some time off & his sister Kendra will be home from college and can help with the boys. I'm not happy about this and will probably try to change my mind several times, but I know it won't be long until I start dropping things again because I can't get my hand to work right.
Our bright news is that we're all actually doing really well. Zachary LOVES preschool and has a Thanksgiving program & dinner next Tuesday that we're really excited about. Eli is growing well, his last weight check was 20lbs 8oz! He is starting to put a lot of weight on his legs when we stand him up and is so close to crawling that Albert has his suitcase packed & is ready to go (to explain: Eli loves Albert and Albert loves Eli, but Eli's love for Albert is usually shown in a pinch or slap. Albert is wonderful with him, but is not comfortable with this new mobility Eli is experiencing since he remembers what was like with Zachary).
A side note, I have no idea what I've done to make this look so different from my other posts. I'm too tired to mess with it any longer. I'm not very computer savy and I think this is a prime example. Other blogs I read have really cool backgrounds and banners and other things I like, but I have NO idea how to do that so for now we're all stuck with the boring look until I stumble upon a way to look like the cool kids!
We have so much to be thankful for this year and I just want to take this chance to thank all of you who take the time to read about our family. Your care, concern, prayers, comments, etc means a lot to us and we are thankful for all of you.
Sunday, October 30, 2011
Eli's First Birthday Party
Well, we survived it. Eli's birthday party is over and we all had a wonderful time. Luckily Eli took a nap about noon and woke up twenty minutes before the party started (yeah, that was our plan, we're that good! haha). A lot of our family came over to celebrate this milestone and I think everyone enjoyed themselves. Both boys were tired last night but they still didn't want to go to sleep. Still hoping for more fun I guess! Zachary loves playing with Eli's new toys as much as Eli does. I love that about kids, they can make themselves happy with anything. He got some new outfits (all of which he will be able to use!), a handful of toys and the rest was money for his savings. He got some new things to play with but it wasn't an overwhelming amount, it seemed just right. Thank you to everyone who came and/or sent gifts for him. We've been blessed with so much this year that it's amazing to see it continue.
Over the past several months we've noticed Eli really seems to like Mickey Mouse so we incorporated that theme with his 1st birthday decorations. Mamaw Linda (Bryan's mom) made two Mickey cakes, one white and one chocolate. We put most of his decorations up Friday night after he'd gone to bed so when he got up Saturday morning he was surprised by what he saw in the living room. It was really cute to watch him check it all out. His favorite was the balloons.
Here's a few pictures from the party. I'll apologize now for the few that are sideways. I changed them on our computer but they still loaded sideways & I can't figure out how to fix them on here.
Over the past several months we've noticed Eli really seems to like Mickey Mouse so we incorporated that theme with his 1st birthday decorations. Mamaw Linda (Bryan's mom) made two Mickey cakes, one white and one chocolate. We put most of his decorations up Friday night after he'd gone to bed so when he got up Saturday morning he was surprised by what he saw in the living room. It was really cute to watch him check it all out. His favorite was the balloons.
Here's a few pictures from the party. I'll apologize now for the few that are sideways. I changed them on our computer but they still loaded sideways & I can't figure out how to fix them on here.
Eli's "dig into" cake.
My Aunt Patty came from Evansville for the celebration.
A look at some of the decorations and gift table. Our whole living room was
covered in "1" "Birthday Boy" and balloons. It was fun :)
Bryan's Great-Aunt Donna holding Eli. He was very good and enjoyed all the visitors.
The cakes made by Bryan's mom. She's pretty handy to have around!!!! ;)
That hat stayed on for about 12 seconds. We chose an appropriate pacifier
for the day, it said "It's All About ME!"
He LOVED the musical Mickey cards he got. He rocked back & forth and
bounced up & down with the music. He also opened the cards over & over and
looked to make sure everyone was dancing. You can see that his left foot is
moving in this picture.
I don't know what this face was about but it's pretty cute. Maybe "I hope
no one's going to take this from me!"
Holding his balloon and getting ready to check out his cake
while we sang Happy Birthday to him.
He poked at it a lot and acted like he was going to lean in & take a bite
out of the cake but always stopped himself. You can see Bryan off to the
side acting like he'll take a bite.
Still working on it.
He got a lot more confidence after we gave him a spoon. I don't know if he
ate much more but it definitely increased the mess!
The finished mess.
After opening & playing with gifts, having his cake, and getting a bath
this was one tired baby! We have almost the same picture of Bryan holding
Zachary after his first birthday party.
It's hard to see but his hair is standing on end because he'd played so long with
his balloons. The woman using the balloons to hide from the camera is Bryan's
grandma Joyce, better known as Granny. Her hair was standing up a little too :)
Both boys playing with the balloons. (and Granny!)
~~ What sweeties!~~
Thursday, October 27, 2011
WC Preschool Halloween Party & Eli's Birthday
Here are a few pictures that I promised:
Cowgirl Momma & her Cat in the Hat
We took the three preschool classes to the high school for Trick-or-Treating. The little kids did some cute Halloween songs and the middle & high school teachers & kids had candy for them. It was fun walking through my old stomping grounds! A lot has changed since I was a student there.
Zachary's definitely one of the taller kids but it was even easier to spot him in a crowd with his red & white striped hat!
A look at the whole outfit. You can't see the tail in this photo, I'll have to get a picture of that!
There were lots of really neat costumes at school today. Several princesses, a bunny, a monkey, a lion, a witch, Thomas the Train, a dinosaur, Super Mario, a policeman, a UPS driver, a couple fireman and even an Elvis! I had a good time with the kids today. Now I am done for a while! Today definitely helped remind me that I am not cut out to be a full-time daycare provider, thanks to those of you who can do it :)
When we got home we got to sing Happy Birthday to Eli! Here's the birthday boy
Reading his card from Mamaw Betty. The boy has a serious Mickey Mouse addiction.
"Yep, it's my birthday."
A different view of the cheeks.
"Hey, Momma! Show those people my teeth. I've worked hard for these things." He now has four bottom teeth through and his top ridge looks like 5 or 6 could come through at any time. Poor kid, but he isn't fussy with it!
We're not doing much today for his birthday. Bryan will probably have to work late and then he has two softball games tonight. Saturday is our party day!
One Year
Wow. I sat beside Eli's crib while he was sleeping and watched my baby turn one year old. Isn't it amazing that at 11:59pm he's still 11 months old but one short minute later he's a one year old? Sometimes that's how I feel this year has been, one short minute. I'm happy/sad/excited that his birthday is here. It's incredibly hard to believe it's already been a year, and what a year it's been! Personally, I think January is going to be a tough month for me because that's when he was diagnosed, had his first surgery and spent most of that month in the hospital. Right now when we think back one year we remember "It's a boy!" and "Look at those cheeks!" We remember going to my grandmother's 95th birthday celebration and showing him off. We had ballgames, a circus, lots of snuggly nights and hugs & kisses. Our struggles didn't start until Christmas/New Year's, and that timeframe is only in hindsight.
Eli is very close to crawling. We had to lower his crib mattress the other night because he's starting to pull himself to his knees in the crib. Yesterday with his therapist he was pulling himself up using the couch and a little leg support from us. Over the past week he's fallen to his face & belly several times as he rocks forward and pulls his pelvis off the floor, then he's mad because he's "stuck" on his belly & we have to help remind him that he can roll to his back from his belly. Despite not crawling yet he's very mobile with his scooting. He's also got the longest reach I've ever seen on a little guy. Seriously, his physical therapist talks about his Gadget arms and how far away we have to put things to entice him to crawl, otherwise he'll just reach out and grab it.
Today is Zachary's Halloween party at school. For a kid who said "we don't need Halloween this year" he is very excited about it! I volunteered to help and can't wait to see all the cute little ones in their costumes. I'm going to be wearing one of my Dad's old western shirts and handkerchiefs with cowboy boots & a hat. Zachary will be very stylish in a Cat in the Hat bowtie, hat, gloves & tail. We'll get pics on here after we all go Trick-or-Treating this weekend. Halloween was never something I looked forward to until having kids, now even this Halloween-Grinch has had a change of heart (for the cute stuff anyway!)
Monday night we had a photo session with Mindy Graber, owner of Reflections by Mindy. She did a great job as always and now we're back to our usual complaint with her work....narrowing down our choices! If you'd like to see go to www.smugmug.com and type mgraber in the search box at the top. When you open her gallery you can find the session labeled Veale and click on that to see the pictures. We had a blast doing them. In the past Zachary's not been the easiest to work with when it came to pictures but they were both so good and had a lot of fun.
Eli's birthday party is on Saturday at two. Anyone who wants to come wish him a "Happy Birthday" is welcome to come by our messy house & do so! It's not anything fancy & please don't bring anything, we're just having cake & ice cream & a good time! Thanks for all the support this past year. We appreciate all of it and you've all been so good at it that we'll just keep asking for more! ;)
Eli is very close to crawling. We had to lower his crib mattress the other night because he's starting to pull himself to his knees in the crib. Yesterday with his therapist he was pulling himself up using the couch and a little leg support from us. Over the past week he's fallen to his face & belly several times as he rocks forward and pulls his pelvis off the floor, then he's mad because he's "stuck" on his belly & we have to help remind him that he can roll to his back from his belly. Despite not crawling yet he's very mobile with his scooting. He's also got the longest reach I've ever seen on a little guy. Seriously, his physical therapist talks about his Gadget arms and how far away we have to put things to entice him to crawl, otherwise he'll just reach out and grab it.
Today is Zachary's Halloween party at school. For a kid who said "we don't need Halloween this year" he is very excited about it! I volunteered to help and can't wait to see all the cute little ones in their costumes. I'm going to be wearing one of my Dad's old western shirts and handkerchiefs with cowboy boots & a hat. Zachary will be very stylish in a Cat in the Hat bowtie, hat, gloves & tail. We'll get pics on here after we all go Trick-or-Treating this weekend. Halloween was never something I looked forward to until having kids, now even this Halloween-Grinch has had a change of heart (for the cute stuff anyway!)
Monday night we had a photo session with Mindy Graber, owner of Reflections by Mindy. She did a great job as always and now we're back to our usual complaint with her work....narrowing down our choices! If you'd like to see go to www.smugmug.com and type mgraber in the search box at the top. When you open her gallery you can find the session labeled Veale and click on that to see the pictures. We had a blast doing them. In the past Zachary's not been the easiest to work with when it came to pictures but they were both so good and had a lot of fun.
Eli's birthday party is on Saturday at two. Anyone who wants to come wish him a "Happy Birthday" is welcome to come by our messy house & do so! It's not anything fancy & please don't bring anything, we're just having cake & ice cream & a good time! Thanks for all the support this past year. We appreciate all of it and you've all been so good at it that we'll just keep asking for more! ;)
Friday, October 21, 2011
What's His Rhythm?
Eli had a check up today with his cardiologist in Evansville. This was Dr. Kumbar's first time to see him since surgery. His oxygen saturation ranged from 87-90% which is probably the highest he's ever been. A normal person should be over 90% (closer to 100%), but Eli's numbers are very good for his condition. An EKG showed that his heart is still in the junctional rhythm. That wasn't what we were hoping to find out but it is what we expected. For now we won't do anything about it unless he has problems. Our plan is to follow up with Dr. Kumbar in two months. The day we see her, one of the cardiologists from our group in Indy will be at her office and we will see both of them. It works out well that Dr. Steinberg will be there because he's the one who would actually place Eli's pacemaker if/when he gets one.
We've been told by a couple of the cardiologists now that there's not really a reason Eli's heart changed rhythm with this surgery. The surgery wasn't in the area of the heart that is causing this rhythm so it's kind of a mystery why it has happened. Because they don't know why it changed, they're not convinced it won't convert (change back) on its own, but as more time passes the chances are decreasing. If it doesn't convert then our only option is to get a pacemaker. I don't know anyone who wants their baby to have a pacemaker but we're not too upset about it. Our view is that with Eli's condition we're going to encounter a lot of problems; we'll save the real worries for the problems that don't have any options. And of course we'll pray that he converts on his own and that this will never be an issue again.
Good news from the appointment is that we can stop using his Lasix. So now his medicines are Prilosec (acid inhibitor for the stomach), Aspirin (blood thinner), daily vitamin and antibiotic ointment for the skin around his feeding tube. He will probably have to go back on Captopril (helps increase his heart function) but for now is staying off of it because his heartrate is low due to the junctional rhythm and Captopril would only decrease it further.
Eli has at least one, maybe two bottom teeth that broke through this week. None of his top teeth are in yet, but the whole gum line is red and hard so I wouldn't be surprised if his top teeth all come in at once! He's been sleeping much better lately too (other than a few whiny teething nights). When we first got home from the hospital he had a lot of trouble going to sleep. I would have to sit by his bed for a long time (sometimes several hours) until he was in a deep sleep because if he woke up and was alone he would scream terribly. He didn't want to be held or rocked but we just had to rub his head & back and talk softly to him & he would settle down. At times it was like he was having nightmares. I really think babies can suffer from a post-traumatic stress disorder. All that has been better for a couple of weeks.
Thanks again for all the prayers. If I could be so bold as to be specific in our prayer requests -- for Eli's heart to convert on its own, for continued strength for all four of us, for my brother-in-law's mother who is in the hospital in serious but stable condition, and for Bryan to have a GREAT birthday (10/22)!!!! Thanks again for all the love & support!
We've been told by a couple of the cardiologists now that there's not really a reason Eli's heart changed rhythm with this surgery. The surgery wasn't in the area of the heart that is causing this rhythm so it's kind of a mystery why it has happened. Because they don't know why it changed, they're not convinced it won't convert (change back) on its own, but as more time passes the chances are decreasing. If it doesn't convert then our only option is to get a pacemaker. I don't know anyone who wants their baby to have a pacemaker but we're not too upset about it. Our view is that with Eli's condition we're going to encounter a lot of problems; we'll save the real worries for the problems that don't have any options. And of course we'll pray that he converts on his own and that this will never be an issue again.
Good news from the appointment is that we can stop using his Lasix. So now his medicines are Prilosec (acid inhibitor for the stomach), Aspirin (blood thinner), daily vitamin and antibiotic ointment for the skin around his feeding tube. He will probably have to go back on Captopril (helps increase his heart function) but for now is staying off of it because his heartrate is low due to the junctional rhythm and Captopril would only decrease it further.
Eli has at least one, maybe two bottom teeth that broke through this week. None of his top teeth are in yet, but the whole gum line is red and hard so I wouldn't be surprised if his top teeth all come in at once! He's been sleeping much better lately too (other than a few whiny teething nights). When we first got home from the hospital he had a lot of trouble going to sleep. I would have to sit by his bed for a long time (sometimes several hours) until he was in a deep sleep because if he woke up and was alone he would scream terribly. He didn't want to be held or rocked but we just had to rub his head & back and talk softly to him & he would settle down. At times it was like he was having nightmares. I really think babies can suffer from a post-traumatic stress disorder. All that has been better for a couple of weeks.
Thanks again for all the prayers. If I could be so bold as to be specific in our prayer requests -- for Eli's heart to convert on its own, for continued strength for all four of us, for my brother-in-law's mother who is in the hospital in serious but stable condition, and for Bryan to have a GREAT birthday (10/22)!!!! Thanks again for all the love & support!
Friday, September 23, 2011
The Beginning to the Present
Where's the best place to start any story? I guess the answer is always the beginning, although sometimes that's hard to find! Since I really started journaling our story when Eli was diagnosed I think I'll start from around the time he was born. I know that's backtracking for some of you who may be reading this, but I want to paint the whole picture. Let me warn you, this will be long. I promise not to always write so much, but this will give a lot of information and it will cover the past 11 months. So our journey begins:
Picture it.....Washington, Indiana, October 27, 2010 (yes, that was a Golden Girls reference). We were a family of three that morning, but at 6:46pm we became a family of four with Eli's entrance into the world. He was 8lbs 12oz and 21 1/2 inches of cuteness with a lot of dark hair, extremely chubby cheeks and a bottom lip that quivered when he cried. Zachary's first words when he saw Eli were, "Oh he's so cute & tiny!" It was love at first sight, just as it was when Zachary was born.
Zachary was a wonderful big brother and still has not exhibited any signs of jealousy or negativity toward Eli. During Eli's first two months of life we did a lot of normal family things; went to a couple birthday parties, went to the circus on Thanksgiving weekend, went to a Pacer game (the boys were on tv!), had our winter holidays and were just settling into a new year full of promise when things quickly changed.
There were a few things we noticed about Eli that just didn't quite add up. Individually, nothing was of major concern, but as we were making a list of things to talk about at his 2 month check up the combination was worrisome. At the doctor's office the first thing they did was weigh him. When the scales showed 8lbs 5oz I insisted the scales be zeroed and to reweigh him. Unfortunately we got the same answer; at exactly 10 weeks old he was 7 ounces less than his birth weight. Something was seriously wrong with our baby.
He was admitted to our local hospital, Daviess Community, and testing was started. We initially thought it was a gastrointestinal (GI) problem because of the weight loss accompanied by some of the things we had on our "list." Several tests were ordered, some for that evening and some for the next morning. Luckily, a chest x-ray was done that night and it showed an enlarged heart. That could have been secondary to a GI problem or it could be a cardiac issue. Further testing would reveal more answers. It was decided to transfer him to St. Mary's Hospital in Evansville that night so we would have more availability to specialists as we worked through this puzzle. Eli was taken by ambulance with a St. Mary's Pediatric Intensive Care RN, a respiratory therapist and an EMT. Bryan and I went home to pack a few more items since we'd be an hour away from home instead of 5 minutes. We also needed to see Zachary before we left.
Eli arrived about midnight and Bryan & I got there shortly after. He was stable and testing was scheduled for the morning. Unfortunately his heartrate dropped several times in the night and it was decided to proceed with the echocardiogram (ultrasound of the heart and its vessels) at 3am. Dr. Kumbar (pediatric cardiologist) examined him and did the test for about an hour. Then she sat us down and started drawing pictures. The first was a picture of a normal heart and its blood flow. Then she drew Eli's heart. Drastic differences.
Even with the extensive exam she did she wasn't sure of all of his defects. She explained what she knew and that there was more going on but that would be diagnosed elsewhere. St. Mary's is a very good hospital, but Eli was very little and very sick and needed even more specialized care. Her recommendation was Peyton Manning Children's Hospital at St. Vincent in Indianapolis. We had heard of it and also figured she did this more than we did so we'd go with what she suggested. Again, he was stable so transport would be soon, but not emergently. He was flown by helicopter to Indy that afternoon. Since we stayed with him until he left Evansville he arrived in Indy just as we got to Washington. Again, we had to grab a few more items from home but elected not to see Zachary. That was a horrible decision to make, but we felt that he'd seen us already dash out of the house twice with bags and he didn't need to see it again. Besides, by this point we were very upset and heading into 30+ hours without any sleep. Because they were worried about our safety, Bryan's parents drove us to Indy so we could try to rest (nice thought, but didn't happen). They even took us separately, Bryan & his dad in their truck and me & Linda in our van, so we'd have a vehicle.
Luckily, Bryan's sister Kendra was still home on Christmas break and could stay with Zachary. I need to pause Eli's story here and brag about Zachary for a moment. He had been against potty training for some time. Bryan & I didn't push the issue a lot because we didn't want him to have a negative attitude about it. Zachary could get his pants down, diaper off & do his business, but he didn't know before he had to go. He was very good at telling us after he went. On January 4th he said, "Mommy, I want to wear my unner-wears today." He never wanted to wear them so of course I got some on him as soon as he showed interest. There were several accidents over the next couple of days, but he didn't get discouraged at all and was wearing underwear full-time by Eli's surgery on January 10th. I'm just amazed at how well he did despite all the changes in his life at the time.
We arrived in Indy about 5:30pm and Eli had already had a bath (threw up after the flight) and been seen by the PICU intensivist and two pediatric cardiologists. Another echo had been done and the doctors were ready to talk to us about their findings. Eli was born with multiple heart defects: Transposition of the Great Vessels, Coarction of the Aorta, Tricuspid Atresia, and Ventricular Septal Defect. I'll explain those in another blog for anyone who wants more info on each of them and how they relate to Eli. Basically our little boy was dying and our only chance was open heart surgery. All this was on Thursday. The cardiologists & surgeon had developed a specific surgical plan by Saturday and surgery was scheduled for Monday, January 10.
Dr. Abraham (the surgeon) came to us on Sunday to explain the procedure. He was very thorough about the risks and problems we were facing. The surgery is very complicated and risky, but even more so for Eli. Most babies with his defects are diagnosed during pregnancy. The few that aren't usually have problems at birth and are diagnosed within hours of delivery. The longest anyone could remember a baby surviving at home before being diagnosed was 5 days, and medical personnel were amazed at that. Eli was 10 weeks old. People couldn't believe he was without symptoms for that long. He's still talked about at St. V's as a miracle baby. You would think that being a little older would be an advantage before surgery, but not in this case. It was actually complicating things because his heart had worked wrong for so long and was so enlarged. His condition was rapidly deteriorating. There were major differences between the Eli we saw in Indy from the Eli we had in Washington just a few days prior.
Zachary was with us for a few hours on Sunday and gave Eli (and us!) lots of kisses. Then he went back to Washington and we spent the night saying goodbye to our baby who was still so perfect in our eyes. Dr. Abraham had said there was a 30% chance Eli wouldn't make it out of the operating room. Of course we were hoping & praying for the best, but we had to prepare ourselves for the worst. Even if he made it out, we were told he'd be on ECMO, a machine that acts as his heart and pumps his blood for him so his heart can rest. Our prayers were beyond answered when he was out of surgery & NOT on the machine. His heart was beating on its own. He was on a ventilator and had 493,271 tubes & wires attached to him, but we didn't see any of that. We only saw that perfect baby boy again whose chest was moving with a beating heart.
He was off the ventilator by Thursday night. He was out of the PICU and in a regular room eight days after surgery. We left the hospital exactly 3 weeks after he flew there. Our original expectation was to be in PICU for 3 weeks. I guess Eli didn't get that memo! The only "complication" was that he didn't want to eat. He only wanted his pacifier. We had to feed him through a tube that went into his nose, down his throat & into his stomach. Bryan & I changed that weekly for a while, but opted for another surgery in February to place a feeding tube directly into his stomach. That was a tough decision for us at first, but now we know without a doubt we did the right thing.
In early February he developed bloody stools. It was determined he had a milk protein intolerance so his formula was changed and he was taken off of breastmilk, which we had been fortifying with regular formula to increase his calories. If we wanted him to have breastmilk I would have to follow a strict "no dairy" diet. I tried for several days but one of the disadvantages is that milk production decreases. I wasn't producing much anyway and it was very discouraging to follow the diet, drink enough liquids, pump 6-8 times a day and only get about 4 ounces of milk for a daily total. That, coupled with the stressful changes occuring in our lives led me to the decision to quit pumping. I struggled with that for a long time and have just recently realized it was the best choice for us at the time.
After changing his formula he finally started gaining weight consistently. At his lowest he was about 7 1/2 pounds. That's too small for our family! In the middle of March he started drinking from a bottle. He did wonderfully, but it's a lot of work for a little one to injest and digest enough calories so his feeding tube was (and still is) used on a daily basis.
He was hospitalized in March for pneumonia and once in July for a GI virus. Both of those were two night stays and he did great. Because of his underlying heart problems, we treat any little thing like it could be a big deal. Overall he's been pretty healthy & very happy.
A huge reason he's done so well is because of participating in therapy after his heart surgery. Once he was discharged home we went to our local hospital three times a week, once each for physical, occupational & speech therapy. Since then we've been involved with First Steps, a government agency that provides therapy in the home. We loved our therapists at DCH and are so grateful for the advances he made with them, but it's so nice to have therapy at home now! It's easier on Eli and Zachary gets to participate if he wants. People are often surprised that a baby can have therapy (I was too in the beginning). At first it was exercises to help strengthen his neck and shoulders because he wasn't even holding his head up and he was 3 months old. He's made tremendous advances and we really can't say he's delayed. His main requirement for therapy is to work with his amount of cardiac endurance so he can get the most benefit.
Eli's second heart surgery was done on September 1. Eli was so much healthier going into this surgery and, of the three he will require, this one is the "easiest." The risk of death was estimated to be 1-2%. Of course we were still worried, but also felt that he was as ready as he could be for it. Again, he did wonderfully. He was off the ventilator 12 hours after surgery (actually a little longer than they had estimated he would need it). He did have some fluid on his lungs, but that was taken care of by medicine so we didn't have to place a chest tube to drain it. His heart rhythm changed because of the surgery so a temporary pacemaker was placed while he was in the OR.
A normal heart rhythm is called normal sinus rhythm (NSR). Eli's heart was in a junctional rhythm. During his recovery he would return to a junctional rhythm everytime the pacemaker was turned off. It's something one can live with but it's not ideal, especially for a baby with only one ventricle. As of now he's still in a junctional rhythm. He could come out of it but the longer he stays this way the chance is less & less that he'll return to NSR on his own. We're probably looking at placing a permanent pacemaker sometime in the next few months. That's not something we're thrilled about, but we're just happy that it's a complication we can manage. There are worse things that could happen.
Overall his recovery from the second surgery was great. Surgery was on the 1st and he was home on the 9th. It would have been sooner if not for the heart rhythm issue. He's resumed physical and speech therapy with some restrictions but was glad to see his therapists again. He's had one session of each and did very well both times. His activity and appetite are increasing every day. We're very proud of our little trooper.
We're also extremely proud of Zachary who had a rough time with this separation for Eli's surgery. He knows we've had to be apart a lot because "Eli has a sick heart" but he continues to amaze us by praying for Eli and our family and never acting out at Eli. Zachary has a big soft spot for his baby brother. He was physically sick the day of Eli's surgery but once he got the report that surgery was over and Eli was doing well, he took a nap and his belly was fine after that. His first day of preschool was 5 days after surgery. He thought Mamaw Betty was going to take him, but I was able to surprise him by coming home the night before and take him to school. He's had a lot of adjustments to make and he's done great with all of them.
I decided to try blogging because we've had a lot of people who want to keep updated with Eli's progress. It's not just about Eli anymore, it's all of us. I used to do Eli Updates on Facebook, but this seems more personal. This should be easier for people to access. If you want to follow us, just subscribe to our blog and you'll be notified by e-mail whenever we post something. We will also use this (and our previous FB posts & comments) to create a journal for the boys to look back at and see what our life was like. We cherish all the comments and encouragement we've received and hope you continue to spoil us with your kind words here so we can save them as well.
We are very grateful to our family & friends who have helped us so much with countless prayers, lots of meals, help with housework, taking care of Zachary & monetary donations. We don't know what we'd do without those people.
It's been a quick year for us, full of stress and tears, but also full of achievement, growth, renewed faith and lots of learning. These precious boys are our life. It's surprising and comforting how our love for them continues to grow --With Every Little Beat......
Picture it.....Washington, Indiana, October 27, 2010 (yes, that was a Golden Girls reference). We were a family of three that morning, but at 6:46pm we became a family of four with Eli's entrance into the world. He was 8lbs 12oz and 21 1/2 inches of cuteness with a lot of dark hair, extremely chubby cheeks and a bottom lip that quivered when he cried. Zachary's first words when he saw Eli were, "Oh he's so cute & tiny!" It was love at first sight, just as it was when Zachary was born.
Zachary was a wonderful big brother and still has not exhibited any signs of jealousy or negativity toward Eli. During Eli's first two months of life we did a lot of normal family things; went to a couple birthday parties, went to the circus on Thanksgiving weekend, went to a Pacer game (the boys were on tv!), had our winter holidays and were just settling into a new year full of promise when things quickly changed.
There were a few things we noticed about Eli that just didn't quite add up. Individually, nothing was of major concern, but as we were making a list of things to talk about at his 2 month check up the combination was worrisome. At the doctor's office the first thing they did was weigh him. When the scales showed 8lbs 5oz I insisted the scales be zeroed and to reweigh him. Unfortunately we got the same answer; at exactly 10 weeks old he was 7 ounces less than his birth weight. Something was seriously wrong with our baby.
He was admitted to our local hospital, Daviess Community, and testing was started. We initially thought it was a gastrointestinal (GI) problem because of the weight loss accompanied by some of the things we had on our "list." Several tests were ordered, some for that evening and some for the next morning. Luckily, a chest x-ray was done that night and it showed an enlarged heart. That could have been secondary to a GI problem or it could be a cardiac issue. Further testing would reveal more answers. It was decided to transfer him to St. Mary's Hospital in Evansville that night so we would have more availability to specialists as we worked through this puzzle. Eli was taken by ambulance with a St. Mary's Pediatric Intensive Care RN, a respiratory therapist and an EMT. Bryan and I went home to pack a few more items since we'd be an hour away from home instead of 5 minutes. We also needed to see Zachary before we left.
Eli arrived about midnight and Bryan & I got there shortly after. He was stable and testing was scheduled for the morning. Unfortunately his heartrate dropped several times in the night and it was decided to proceed with the echocardiogram (ultrasound of the heart and its vessels) at 3am. Dr. Kumbar (pediatric cardiologist) examined him and did the test for about an hour. Then she sat us down and started drawing pictures. The first was a picture of a normal heart and its blood flow. Then she drew Eli's heart. Drastic differences.
Even with the extensive exam she did she wasn't sure of all of his defects. She explained what she knew and that there was more going on but that would be diagnosed elsewhere. St. Mary's is a very good hospital, but Eli was very little and very sick and needed even more specialized care. Her recommendation was Peyton Manning Children's Hospital at St. Vincent in Indianapolis. We had heard of it and also figured she did this more than we did so we'd go with what she suggested. Again, he was stable so transport would be soon, but not emergently. He was flown by helicopter to Indy that afternoon. Since we stayed with him until he left Evansville he arrived in Indy just as we got to Washington. Again, we had to grab a few more items from home but elected not to see Zachary. That was a horrible decision to make, but we felt that he'd seen us already dash out of the house twice with bags and he didn't need to see it again. Besides, by this point we were very upset and heading into 30+ hours without any sleep. Because they were worried about our safety, Bryan's parents drove us to Indy so we could try to rest (nice thought, but didn't happen). They even took us separately, Bryan & his dad in their truck and me & Linda in our van, so we'd have a vehicle.
Luckily, Bryan's sister Kendra was still home on Christmas break and could stay with Zachary. I need to pause Eli's story here and brag about Zachary for a moment. He had been against potty training for some time. Bryan & I didn't push the issue a lot because we didn't want him to have a negative attitude about it. Zachary could get his pants down, diaper off & do his business, but he didn't know before he had to go. He was very good at telling us after he went. On January 4th he said, "Mommy, I want to wear my unner-wears today." He never wanted to wear them so of course I got some on him as soon as he showed interest. There were several accidents over the next couple of days, but he didn't get discouraged at all and was wearing underwear full-time by Eli's surgery on January 10th. I'm just amazed at how well he did despite all the changes in his life at the time.
We arrived in Indy about 5:30pm and Eli had already had a bath (threw up after the flight) and been seen by the PICU intensivist and two pediatric cardiologists. Another echo had been done and the doctors were ready to talk to us about their findings. Eli was born with multiple heart defects: Transposition of the Great Vessels, Coarction of the Aorta, Tricuspid Atresia, and Ventricular Septal Defect. I'll explain those in another blog for anyone who wants more info on each of them and how they relate to Eli. Basically our little boy was dying and our only chance was open heart surgery. All this was on Thursday. The cardiologists & surgeon had developed a specific surgical plan by Saturday and surgery was scheduled for Monday, January 10.
Dr. Abraham (the surgeon) came to us on Sunday to explain the procedure. He was very thorough about the risks and problems we were facing. The surgery is very complicated and risky, but even more so for Eli. Most babies with his defects are diagnosed during pregnancy. The few that aren't usually have problems at birth and are diagnosed within hours of delivery. The longest anyone could remember a baby surviving at home before being diagnosed was 5 days, and medical personnel were amazed at that. Eli was 10 weeks old. People couldn't believe he was without symptoms for that long. He's still talked about at St. V's as a miracle baby. You would think that being a little older would be an advantage before surgery, but not in this case. It was actually complicating things because his heart had worked wrong for so long and was so enlarged. His condition was rapidly deteriorating. There were major differences between the Eli we saw in Indy from the Eli we had in Washington just a few days prior.
Zachary was with us for a few hours on Sunday and gave Eli (and us!) lots of kisses. Then he went back to Washington and we spent the night saying goodbye to our baby who was still so perfect in our eyes. Dr. Abraham had said there was a 30% chance Eli wouldn't make it out of the operating room. Of course we were hoping & praying for the best, but we had to prepare ourselves for the worst. Even if he made it out, we were told he'd be on ECMO, a machine that acts as his heart and pumps his blood for him so his heart can rest. Our prayers were beyond answered when he was out of surgery & NOT on the machine. His heart was beating on its own. He was on a ventilator and had 493,271 tubes & wires attached to him, but we didn't see any of that. We only saw that perfect baby boy again whose chest was moving with a beating heart.
He was off the ventilator by Thursday night. He was out of the PICU and in a regular room eight days after surgery. We left the hospital exactly 3 weeks after he flew there. Our original expectation was to be in PICU for 3 weeks. I guess Eli didn't get that memo! The only "complication" was that he didn't want to eat. He only wanted his pacifier. We had to feed him through a tube that went into his nose, down his throat & into his stomach. Bryan & I changed that weekly for a while, but opted for another surgery in February to place a feeding tube directly into his stomach. That was a tough decision for us at first, but now we know without a doubt we did the right thing.
In early February he developed bloody stools. It was determined he had a milk protein intolerance so his formula was changed and he was taken off of breastmilk, which we had been fortifying with regular formula to increase his calories. If we wanted him to have breastmilk I would have to follow a strict "no dairy" diet. I tried for several days but one of the disadvantages is that milk production decreases. I wasn't producing much anyway and it was very discouraging to follow the diet, drink enough liquids, pump 6-8 times a day and only get about 4 ounces of milk for a daily total. That, coupled with the stressful changes occuring in our lives led me to the decision to quit pumping. I struggled with that for a long time and have just recently realized it was the best choice for us at the time.
After changing his formula he finally started gaining weight consistently. At his lowest he was about 7 1/2 pounds. That's too small for our family! In the middle of March he started drinking from a bottle. He did wonderfully, but it's a lot of work for a little one to injest and digest enough calories so his feeding tube was (and still is) used on a daily basis.
He was hospitalized in March for pneumonia and once in July for a GI virus. Both of those were two night stays and he did great. Because of his underlying heart problems, we treat any little thing like it could be a big deal. Overall he's been pretty healthy & very happy.
A huge reason he's done so well is because of participating in therapy after his heart surgery. Once he was discharged home we went to our local hospital three times a week, once each for physical, occupational & speech therapy. Since then we've been involved with First Steps, a government agency that provides therapy in the home. We loved our therapists at DCH and are so grateful for the advances he made with them, but it's so nice to have therapy at home now! It's easier on Eli and Zachary gets to participate if he wants. People are often surprised that a baby can have therapy (I was too in the beginning). At first it was exercises to help strengthen his neck and shoulders because he wasn't even holding his head up and he was 3 months old. He's made tremendous advances and we really can't say he's delayed. His main requirement for therapy is to work with his amount of cardiac endurance so he can get the most benefit.
Eli's second heart surgery was done on September 1. Eli was so much healthier going into this surgery and, of the three he will require, this one is the "easiest." The risk of death was estimated to be 1-2%. Of course we were still worried, but also felt that he was as ready as he could be for it. Again, he did wonderfully. He was off the ventilator 12 hours after surgery (actually a little longer than they had estimated he would need it). He did have some fluid on his lungs, but that was taken care of by medicine so we didn't have to place a chest tube to drain it. His heart rhythm changed because of the surgery so a temporary pacemaker was placed while he was in the OR.
A normal heart rhythm is called normal sinus rhythm (NSR). Eli's heart was in a junctional rhythm. During his recovery he would return to a junctional rhythm everytime the pacemaker was turned off. It's something one can live with but it's not ideal, especially for a baby with only one ventricle. As of now he's still in a junctional rhythm. He could come out of it but the longer he stays this way the chance is less & less that he'll return to NSR on his own. We're probably looking at placing a permanent pacemaker sometime in the next few months. That's not something we're thrilled about, but we're just happy that it's a complication we can manage. There are worse things that could happen.
Overall his recovery from the second surgery was great. Surgery was on the 1st and he was home on the 9th. It would have been sooner if not for the heart rhythm issue. He's resumed physical and speech therapy with some restrictions but was glad to see his therapists again. He's had one session of each and did very well both times. His activity and appetite are increasing every day. We're very proud of our little trooper.
We're also extremely proud of Zachary who had a rough time with this separation for Eli's surgery. He knows we've had to be apart a lot because "Eli has a sick heart" but he continues to amaze us by praying for Eli and our family and never acting out at Eli. Zachary has a big soft spot for his baby brother. He was physically sick the day of Eli's surgery but once he got the report that surgery was over and Eli was doing well, he took a nap and his belly was fine after that. His first day of preschool was 5 days after surgery. He thought Mamaw Betty was going to take him, but I was able to surprise him by coming home the night before and take him to school. He's had a lot of adjustments to make and he's done great with all of them.
I decided to try blogging because we've had a lot of people who want to keep updated with Eli's progress. It's not just about Eli anymore, it's all of us. I used to do Eli Updates on Facebook, but this seems more personal. This should be easier for people to access. If you want to follow us, just subscribe to our blog and you'll be notified by e-mail whenever we post something. We will also use this (and our previous FB posts & comments) to create a journal for the boys to look back at and see what our life was like. We cherish all the comments and encouragement we've received and hope you continue to spoil us with your kind words here so we can save them as well.
We are very grateful to our family & friends who have helped us so much with countless prayers, lots of meals, help with housework, taking care of Zachary & monetary donations. We don't know what we'd do without those people.
It's been a quick year for us, full of stress and tears, but also full of achievement, growth, renewed faith and lots of learning. These precious boys are our life. It's surprising and comforting how our love for them continues to grow --With Every Little Beat......
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