Thursday, April 19, 2012
Surgery update 2
Got our first call. Kaleb went down with no trouble and they have started working on him. He's doing great.
Surgery update 1
We got to the hospital at 6:00am. Prep for surgery went really well. Kaleb was taken back a little after 7:00am. Mom and dad holding up best we can. Getting coffee right now at Starbucks. We're told this morning 6-8hrs for surgery and they'll update us every hour...
Wednesday, March 21, 2012
We have a plan!
The results are in, Kaleb's first heart surgery will be installing a shunt (which will also fix the pulmonary branch obstruction) and connect the pulmonary veins to the heart (which will fix the pulmonary vein obstruction). No two ventricle repair, at this time.
Once Forbess reviewed the findings of the Cath it was very clear that a two ventricle repair was too risky at this time.
Good news is that Kaleb will be able to grow more before we make a decision on either a single or two ventricle repair. Fixing the obstruction in the veins will also help with the lung issues we're currently having.
Bad news is that we'll have to still be on safe at home program for a much longer time than expected. Being a shunt is high risk for infection. We'll have to have the Ladds done earlier which is not favored by Forbess.
And this may add an additional heart surgery.
It's every emotion you can think of and honestly there was a little lump in my throat. I had high hopes for the 2v repair. But honestly Kaleb needs to be a little bigger and there was just too much to do at one time. Real-estate is a big issue in Kalebs case for the 2v repair. Because his heart is on the opposite side of his body the aorta is in wrong place. Forbess will have to install a conduit "in" the heart (to connect aorta to correct ventricle), which takes up room.
There are so many positives to this when you really think about it. Forbess will do half the work so less time on heart lung bypass. His veins will be fixed allowing better recovery on next surgery. And he will be able to be much bigger to give us that chance of a 2v repair instead of a single ventricle. Biggest downside is the infection risk with the shunt. It's really no different than the stents we have, so quarantine status will remain for another 4-8 months. Yes, it could be that long.
We have a plan and no plan in this situation comes without risks and rewards, but it's nice to know what we are going to be doing. His surgery will
probably be in 3 weeks.......
Once Forbess reviewed the findings of the Cath it was very clear that a two ventricle repair was too risky at this time.
Good news is that Kaleb will be able to grow more before we make a decision on either a single or two ventricle repair. Fixing the obstruction in the veins will also help with the lung issues we're currently having.
Bad news is that we'll have to still be on safe at home program for a much longer time than expected. Being a shunt is high risk for infection. We'll have to have the Ladds done earlier which is not favored by Forbess.
And this may add an additional heart surgery.
It's every emotion you can think of and honestly there was a little lump in my throat. I had high hopes for the 2v repair. But honestly Kaleb needs to be a little bigger and there was just too much to do at one time. Real-estate is a big issue in Kalebs case for the 2v repair. Because his heart is on the opposite side of his body the aorta is in wrong place. Forbess will have to install a conduit "in" the heart (to connect aorta to correct ventricle), which takes up room.
There are so many positives to this when you really think about it. Forbess will do half the work so less time on heart lung bypass. His veins will be fixed allowing better recovery on next surgery. And he will be able to be much bigger to give us that chance of a 2v repair instead of a single ventricle. Biggest downside is the infection risk with the shunt. It's really no different than the stents we have, so quarantine status will remain for another 4-8 months. Yes, it could be that long.
We have a plan and no plan in this situation comes without risks and rewards, but it's nice to know what we are going to be doing. His surgery will
probably be in 3 weeks.......
Finding Our Way
Hi everybody! The last several weeks have flown by, and we have truly enjoyed having our precious Kaleb at home. It's hard to believe he is almost 7 months old, just about 14 pounds, and absolutely HUGE(from our perspective anyway!) Kaleb has been developing by leaps and bounds, as well. He sits up much better, with some assistance of course. He's taken solids-tolerated rice cereal...liked avocado, peaches, and carrots...hated sweet potato and applesauce. Who hates applesauce?! We recently introduced Mr. Juice bear and he will use it with breastmilk only. What can I say? He likes the good stuff! He has amazing directed hand movements! It's amazing to watch him reach for and grab whatever he wants...including his NG tube. In that respect, he has "earned a mitten" on more than one occasion. ;) There have been many walks in beautiful weather for Texas, lots of time spent entertaining us from the crack of the couch, and he even helped us plant the garden. He can put both feet in his mouth at the same time, talk more than his father and me, and his laugh is our most beautiful sound on Earth. Kaleb thrives at home, and we are beyond blessed to have had him there for almost 5 months (give or take a few hospital admissions in between.)
Of course, the time passing quickly means the time for his surgery has been fast approaching. Yesterday, we brought him to Children's Medical Center for the Cath Lab procedure that prepares him for his big heart surgery. The plan was discussed many times, and fairly well understood that Dr. Nugent would: go in, record and analyze pressures and measurements, and a surgical plan would be decided. For some time now, we have been excited that a "2-ventricle" repair is within reach. That means that at the end of Kaleb's heart surgery, Dr. Forbess (our heart surgeon) will have corrected his many defects to become a heart most like yours and mine. If you've looked at Karl's diagrams comparing a normal heart to Kaleb's current condition, this is nothing short of miraculous. With the pumping action of a 2-ventricle heart, Kaleb's life expectancy and quality of life are vastly improved. I won't go into more detail than necessary here, but understand this outcome is a miracle we never thought to pray for. Up to the point this was even mentioned(a little more than a month ago), his survival and quality of life was our entire concern.
So how did this amazing surgery even become an option for Kaleb? Back when he was born, Kaleb was so tiny and his heart defects so complicated, no one thought we could make it to 6 months and 13+ pounds without requiring surgical intervention. At the same time we've spent the past 5 months enjoying every moment with Kaleb, we've also been carefully observing his behavior, monitoring his oxygen saturation, doing everything possible to put weight on him, and taking on his unbelievable reflux. It's been an incredible battle, and as Dr. Nugent says, "we've already won" getting this far. At almost any point before this, the only surgery with a good chance for survival was the single ventricle path that Karl has already described in an earlier post. We were prepared for a single ventricle option, and we were blessed to have it. But a 2 ventricle heart means our baby RUNS without tiring, throws a terrible two size tantrum without turning blue, gets the tube out of his nose and enjoys food for maybe the first time, plays sports if he wants to(and mommy lets him!), and lives a life Karl and I could only dream for him since I was 19 weeks pregnant.
Of course, our top priority is what is best for Kaleb, whether that involves a 2-ventricle repair or a single. Though our first option for surgery is the 2-ventricle repair, if something goes wrong, we need a back-up plan. The single-ventricle path was the back-up plan we hoped to confirm with the measurement and pressure results from yesterday's Cath procedure. From the very beginning, nothing has been according to plan where Kaleb is concerned, and this procedure was no different. The good news gleaned from the Cath is that almost everything the doctors believed about his condition is as they thought-with just a couple of notable exceptions. First of all, the 2 SVCs that Kaleb has are actually connected in a way that one of them can be removed and he will be just fine. Amazing, surprising, and great news for a 2-ventricle repair! Secondly, and the not-so-good news is that his pulmonary pressures are WAY too high for any chance of survival for either of the single ventricle stage surgeries. This is incredibly unfortunate because it leaves us without a back-up plan. I compare this to the idea of jumping out of an airplane knowing full well you have no reserve chute. No sane person would do it, and certainly never allow it for your child.
What does this mean? Probably much more than we know right now, but it absolutely means our doctors are furiously working on a new back-up plan. It also means that his huge surgery will take place in the next couple of weeks, not months. There is nothing but risk associated with waiting at this point. There is also a conference being held as I type, between the best minds of the Cardiac Unit of this hospital, and the goal is to solve this issue. Karl and I are understandably hopeful, as well as, terrified for the outcome of this meeting. Please pray that these incredible doctors are able to design a surgical option that will have a favorable outcome in the event we need it. Please also continue to pray that our little man improves and is able to go home with us before his surgery. As I posted on Facebook earlier, he is having a hard time keeping his oxygen levels up and we have been unable to take the breathing tube out. To further complicate things, he is running a reasonably high fever, so they've run several tests to make sure he hasn't acquired an infection. Hopefully, we will have good news by tonight and will be able to post a follow-up to this post quickly. Enjoy the pictures of our sweet baby K!
One day, one hour, one minute at a time,
Jenifer
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Of course, the time passing quickly means the time for his surgery has been fast approaching. Yesterday, we brought him to Children's Medical Center for the Cath Lab procedure that prepares him for his big heart surgery. The plan was discussed many times, and fairly well understood that Dr. Nugent would: go in, record and analyze pressures and measurements, and a surgical plan would be decided. For some time now, we have been excited that a "2-ventricle" repair is within reach. That means that at the end of Kaleb's heart surgery, Dr. Forbess (our heart surgeon) will have corrected his many defects to become a heart most like yours and mine. If you've looked at Karl's diagrams comparing a normal heart to Kaleb's current condition, this is nothing short of miraculous. With the pumping action of a 2-ventricle heart, Kaleb's life expectancy and quality of life are vastly improved. I won't go into more detail than necessary here, but understand this outcome is a miracle we never thought to pray for. Up to the point this was even mentioned(a little more than a month ago), his survival and quality of life was our entire concern.
So how did this amazing surgery even become an option for Kaleb? Back when he was born, Kaleb was so tiny and his heart defects so complicated, no one thought we could make it to 6 months and 13+ pounds without requiring surgical intervention. At the same time we've spent the past 5 months enjoying every moment with Kaleb, we've also been carefully observing his behavior, monitoring his oxygen saturation, doing everything possible to put weight on him, and taking on his unbelievable reflux. It's been an incredible battle, and as Dr. Nugent says, "we've already won" getting this far. At almost any point before this, the only surgery with a good chance for survival was the single ventricle path that Karl has already described in an earlier post. We were prepared for a single ventricle option, and we were blessed to have it. But a 2 ventricle heart means our baby RUNS without tiring, throws a terrible two size tantrum without turning blue, gets the tube out of his nose and enjoys food for maybe the first time, plays sports if he wants to(and mommy lets him!), and lives a life Karl and I could only dream for him since I was 19 weeks pregnant.
Of course, our top priority is what is best for Kaleb, whether that involves a 2-ventricle repair or a single. Though our first option for surgery is the 2-ventricle repair, if something goes wrong, we need a back-up plan. The single-ventricle path was the back-up plan we hoped to confirm with the measurement and pressure results from yesterday's Cath procedure. From the very beginning, nothing has been according to plan where Kaleb is concerned, and this procedure was no different. The good news gleaned from the Cath is that almost everything the doctors believed about his condition is as they thought-with just a couple of notable exceptions. First of all, the 2 SVCs that Kaleb has are actually connected in a way that one of them can be removed and he will be just fine. Amazing, surprising, and great news for a 2-ventricle repair! Secondly, and the not-so-good news is that his pulmonary pressures are WAY too high for any chance of survival for either of the single ventricle stage surgeries. This is incredibly unfortunate because it leaves us without a back-up plan. I compare this to the idea of jumping out of an airplane knowing full well you have no reserve chute. No sane person would do it, and certainly never allow it for your child.
What does this mean? Probably much more than we know right now, but it absolutely means our doctors are furiously working on a new back-up plan. It also means that his huge surgery will take place in the next couple of weeks, not months. There is nothing but risk associated with waiting at this point. There is also a conference being held as I type, between the best minds of the Cardiac Unit of this hospital, and the goal is to solve this issue. Karl and I are understandably hopeful, as well as, terrified for the outcome of this meeting. Please pray that these incredible doctors are able to design a surgical option that will have a favorable outcome in the event we need it. Please also continue to pray that our little man improves and is able to go home with us before his surgery. As I posted on Facebook earlier, he is having a hard time keeping his oxygen levels up and we have been unable to take the breathing tube out. To further complicate things, he is running a reasonably high fever, so they've run several tests to make sure he hasn't acquired an infection. Hopefully, we will have good news by tonight and will be able to post a follow-up to this post quickly. Enjoy the pictures of our sweet baby K!
One day, one hour, one minute at a time,
Jenifer
Thrilled to be waiting for our x-ray before being admitted for the Cath
Recovering from the Cath-pretty puffy from the fluid they gave him
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Mama watching her crazy kid play with his feet!
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Daddy's favorite picture of Kaleb's fun with feet
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Getting ready to go for a long walk with Mama and Mimi
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A favorite from his 6 month photo shoot
Such a precious little man in his sweater vest-don't you just want to squeeze him?!
Monday, February 20, 2012
Quick Update
Just letting everyone know that I added some links to the right on the blog. They show Kaleb's heart condition and give information about the blood drive.
Karl
Couple new photos of boy...
yummy avacado
sleeping in momies arms
Karl
Couple new photos of boy...
Wednesday, February 1, 2012
And So We Grow
Hi everybody! I know it's been forever since we've updated the blog, and I can only apologize profusely. We've just been so busy enjoying life at HOME with our little man, the time has really flown. Let's get everybody caught up on the latest Prinz happenings!
At the end of November, Kaleb had his 2nd Cath Lab procedure, and it took him a bit longer than expected to recover. I was able to spend the first week with him, but before his discharge mommy had to go back to work(....insert scary movie music here!) We all knew it was coming, but as usual, the timing was terrible. While I taught, Karl and my mom took turns caring for Kaleb. On Karl's days, I'd rush home to relieve him so that he could get to the office for the rest of the evening. He and I rarely saw each other except to trade off the little guy, and neither of us got any sleep. We survived this for exactly 3 weeks, but long before that we knew it would never work. I gave my notice at the school before Christmas Break, and as of January 1st, I joined the ranks of "stay at home mommies."
The decision to leave my job of 9 years for my family was easy, but the act of leaving it was much harder. I don't think good-byes are easy for anyone, but I feel especially terrible at them. Some of our students have absolutely grown up before my eyes, and I'll really miss sharing what I love about music with all of them. I've also made really good friends at the school where I worked, and when we found out about Kaleb's conditions, so many women(and the few men) wanted to help, listen, pray, and care about me and this precious baby they hadn't even met. I won't ever forget the kindness and compassion shown to our family, and I can't wait for the day it's safe to take him to the school for his "Grand Introduction."
I adore my new role at home with Kaleb, but make no mistake-this job isn't for sissies! I thought I was exhausted at the end of my teaching days: singing, dancing, playing instruments, chasing kindergartners(mostly kidding!), and so much more! Nope, this is a whole new level of tired. There is no beginning or end to the day...no coffee break, uninterrupted lunch period, or even bathroom break! I consider that the day officially begins after 6 am, when daddy finishes his feeding. Yes, I did say DADDY finishes his feeding. I have one of the most helpful husbands on the planet, thank goodness.(and yes Karl, this is in writing!) You should understand up front that Kaleb is exclusively NG tube-fed. He decided a month ago that the bottle/boob was no longer his thing, and after much discussion and coaxing to change his mind, he won. So we have a pump that runs his feedings over about an hour. We take turns with the night feedings, which is awesome!! Although our sweet Kaleb is 5 months old, he is incredibly sensitive to change and then there's the reflux. So we are still feeding him every 3 hours round the clock...again, with the scary music cue please! So our feeding schedule goes like this: Karl takes the 6 am before he gets ready for work, and then he brings Kaleb in to me when it's finished. I'm here for the 9, 12, 3, and 6 so those are mine. I do the 9 PM, so Karl can get sleep before he takes the midnight...and I do the 3 am, as well. Factor in that I take him any time he wakes up at night, and that I'm still pumping every blessed ounce of breast milk for his dining pleasure 5 times a day, and you've got one tired mommy on your hands! And you'll never hear me complain about any of it, even in a moment of weakness. Perhaps it comes from the perspective of being mom to a critically -ill child, but I find beauty even in the things that make this "job" incredibly hard. I suppose that sounds a bit hokey, but I'll never apologize for it.
More on our daily life later, let's talk about how Kaleb is doing now-GREAT! We're 2 months post-Cath, and his oxygen-saturation is still 87-92ish. He weighs an astounding 5.29 kilos, which is almost 11 1/2 lbs. Since he started 6 weeks early and 4 lbs 10 oz, we're so proud of him! We still go to Cardiac Clinic every Monday to see Dr. Nugent, and we regularly check in with Kim or Joy with "Safe at Home." We've been looking towards his big cardiac surgery at the end of Feb/beginning of March for some time now. However, at clinic this past week, Dr. Nugent mentioned that he and Dr. Forbess might want to do a 3rd Cath procedure and wait for surgery until Kaleb reaches 8 kilos. Holy cow, that's 17 lbs!! As long as he remains stable, it appears that's the new plan. Dr. Nugent thinks the Cath will take place President's Day week in February. I'm sure we'll have many more details in the next few clinic appointments, so I'll try not to worry about it for now!
This week we started rice cereal!! Mommy was waaay more excited about it than Kaleb could ever have been, I even dubbed Tuesday "National Rice Cereal Day." Karl watched on Facetime and we video-taped the whole thing. Our wonderful speech therapist, Holly, got him eating, and we all cheered him through every bite! We'll have to see how it goes when we're on our own for the rest of the week. Like probably every other baby in the world, he didn't love it right away. But he did try really hard which is all that really matters, right?
He's ridiculously adorable these days! He started babbling several weeks ago, and there are times when he starts talking and just won't stop-wonder where he gets that?! He's constantly moving, and he LOVES music! Wonder where he gets that?! Everybody who sees him regularly seems to have a different opinion about who he looks like. Several of the wonderful ladies from our church who help us regularly and Auntie Martha think he looks like me. Karl and his family think he looks like my dad. My mom and sister think he's his own person. Dr. Nugent thinks he looks just like daddy. I have no idea! The only thing I'm sure of is that he's still the most beautiful thing I've ever seen! Feel free to cast your own opinion when you see the pictures below.
I won't even begin to tell you how long it's taken me to finish this post, so I think I'd better hurry and send it before another few days pass. Now for the seriously cute part...the pictures! Hope everyone is well, and thanks for catching up with us! Please keep us in your prayers!
One day, one hour, one minute at a time,
Jenifer
Right after his bath-one of his favorite things!
This precious Santa Suit was a gift from his Nana. We took 20 pics and he cried the whole time!
Our favorite Christmas picture! Yuki just walked over and turned around perfectly in it!!
Some of his funniest moments are in his diaper on the couch before his night weigh-in
Rice Cereal Day! Doesn't he just look like he's loving it?!
He's got his mama's sideways smile! This little guy is quite the charmer!
I shot this one while he was helping me clean the kitchen from his froggy chair.
He loves playing with his musical flowers!
At the end of November, Kaleb had his 2nd Cath Lab procedure, and it took him a bit longer than expected to recover. I was able to spend the first week with him, but before his discharge mommy had to go back to work(....insert scary movie music here!) We all knew it was coming, but as usual, the timing was terrible. While I taught, Karl and my mom took turns caring for Kaleb. On Karl's days, I'd rush home to relieve him so that he could get to the office for the rest of the evening. He and I rarely saw each other except to trade off the little guy, and neither of us got any sleep. We survived this for exactly 3 weeks, but long before that we knew it would never work. I gave my notice at the school before Christmas Break, and as of January 1st, I joined the ranks of "stay at home mommies."
The decision to leave my job of 9 years for my family was easy, but the act of leaving it was much harder. I don't think good-byes are easy for anyone, but I feel especially terrible at them. Some of our students have absolutely grown up before my eyes, and I'll really miss sharing what I love about music with all of them. I've also made really good friends at the school where I worked, and when we found out about Kaleb's conditions, so many women(and the few men) wanted to help, listen, pray, and care about me and this precious baby they hadn't even met. I won't ever forget the kindness and compassion shown to our family, and I can't wait for the day it's safe to take him to the school for his "Grand Introduction."
I adore my new role at home with Kaleb, but make no mistake-this job isn't for sissies! I thought I was exhausted at the end of my teaching days: singing, dancing, playing instruments, chasing kindergartners(mostly kidding!), and so much more! Nope, this is a whole new level of tired. There is no beginning or end to the day...no coffee break, uninterrupted lunch period, or even bathroom break! I consider that the day officially begins after 6 am, when daddy finishes his feeding. Yes, I did say DADDY finishes his feeding. I have one of the most helpful husbands on the planet, thank goodness.(and yes Karl, this is in writing!) You should understand up front that Kaleb is exclusively NG tube-fed. He decided a month ago that the bottle/boob was no longer his thing, and after much discussion and coaxing to change his mind, he won. So we have a pump that runs his feedings over about an hour. We take turns with the night feedings, which is awesome!! Although our sweet Kaleb is 5 months old, he is incredibly sensitive to change and then there's the reflux. So we are still feeding him every 3 hours round the clock...again, with the scary music cue please! So our feeding schedule goes like this: Karl takes the 6 am before he gets ready for work, and then he brings Kaleb in to me when it's finished. I'm here for the 9, 12, 3, and 6 so those are mine. I do the 9 PM, so Karl can get sleep before he takes the midnight...and I do the 3 am, as well. Factor in that I take him any time he wakes up at night, and that I'm still pumping every blessed ounce of breast milk for his dining pleasure 5 times a day, and you've got one tired mommy on your hands! And you'll never hear me complain about any of it, even in a moment of weakness. Perhaps it comes from the perspective of being mom to a critically -ill child, but I find beauty even in the things that make this "job" incredibly hard. I suppose that sounds a bit hokey, but I'll never apologize for it.
More on our daily life later, let's talk about how Kaleb is doing now-GREAT! We're 2 months post-Cath, and his oxygen-saturation is still 87-92ish. He weighs an astounding 5.29 kilos, which is almost 11 1/2 lbs. Since he started 6 weeks early and 4 lbs 10 oz, we're so proud of him! We still go to Cardiac Clinic every Monday to see Dr. Nugent, and we regularly check in with Kim or Joy with "Safe at Home." We've been looking towards his big cardiac surgery at the end of Feb/beginning of March for some time now. However, at clinic this past week, Dr. Nugent mentioned that he and Dr. Forbess might want to do a 3rd Cath procedure and wait for surgery until Kaleb reaches 8 kilos. Holy cow, that's 17 lbs!! As long as he remains stable, it appears that's the new plan. Dr. Nugent thinks the Cath will take place President's Day week in February. I'm sure we'll have many more details in the next few clinic appointments, so I'll try not to worry about it for now!
This week we started rice cereal!! Mommy was waaay more excited about it than Kaleb could ever have been, I even dubbed Tuesday "National Rice Cereal Day." Karl watched on Facetime and we video-taped the whole thing. Our wonderful speech therapist, Holly, got him eating, and we all cheered him through every bite! We'll have to see how it goes when we're on our own for the rest of the week. Like probably every other baby in the world, he didn't love it right away. But he did try really hard which is all that really matters, right?
He's ridiculously adorable these days! He started babbling several weeks ago, and there are times when he starts talking and just won't stop-wonder where he gets that?! He's constantly moving, and he LOVES music! Wonder where he gets that?! Everybody who sees him regularly seems to have a different opinion about who he looks like. Several of the wonderful ladies from our church who help us regularly and Auntie Martha think he looks like me. Karl and his family think he looks like my dad. My mom and sister think he's his own person. Dr. Nugent thinks he looks just like daddy. I have no idea! The only thing I'm sure of is that he's still the most beautiful thing I've ever seen! Feel free to cast your own opinion when you see the pictures below.
I won't even begin to tell you how long it's taken me to finish this post, so I think I'd better hurry and send it before another few days pass. Now for the seriously cute part...the pictures! Hope everyone is well, and thanks for catching up with us! Please keep us in your prayers!
One day, one hour, one minute at a time,
Jenifer
Right after his bath-one of his favorite things!
Sitting like a big boy in his Bumbo!
Tuesday, January 3, 2012
I just noticed that we have not posted to our blog for the entire month of December and after the cath procedure. He's been home sence the first of December and we had a great holiday with him. Our laptop crashed and we're getting a new one for Christmas. We'll try to update everyone on the big events in December.
Karl
Karl
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