Sunday, March 14, 2010
Friday, March 12, 2010
Two months old!
Our little guy is 2 months old! In some ways these two months have flown by, in other ways it seems like an eternity. Two weeks ago Carter had another ballon dilation and a botox injection of his cricophyrangeal muscle in his throat. The goal being, that the botox would freeze the muscle in the open position, allowing food to flow down the throat. Unfortuanately, not only does that allow food to go down the throat, but it also makes it very easy for food to come back up, in the form of acid reflux. He has really adjusted to everything really well, and seems unphased by all of the testing etc...but the acid reflux just kills him. It rips my heart apart when he wakes up for a deep sleep..gasping for air...his body stiff from the pain. Tears start to stream down his little face, as the acid bubbles into his throat, burning it. After a few minutes of this, he starts to panic, and eventually makes himself throw up. Prior to these last two days, if he was awake he was crying because his throat was so raw. He is already on medication, and we are holding him upright, literally the entire day. In addition, if he starts to cry, we really have to try and stop it immediately, because as you cry your stomach contracts, and causes more reflux. So we couldn't lay him down in the swing, on the floor, in his bouncer..nothing, except hold him. So it did make it really hard to be able to get anything done around the house, or do anything fun or disciple wise with Kyra or Kyle. But despite us holding him, and him being on medication he was refluxing at least 6 times a day, and throwing up EVERYTHING at least twice a day.
Anyway, we had another swallow study and a GI test done this last Wednesday. The GI test was to see how severe his reflux is, because they can't just see him reflux, they have to have clincal proof, before they can do anything more than medication. The only problem is that they can't give him straight formula, they have to mix it with Barium, so that the milk appears on X-ray. The barium makes the milk really thick and so it kind of sinks at the bottom of the stomach. So during the 1 MINUTE that the specialist was looking at the GI films, Carter didn't reflux, and concluded that Carter doesn't relux. So that was really frustrating.
Now the swallow study..we went into the test, thinking that by the end of the test we would be given the go ahead to feed him orally. That was not the case :( Well the muscle is completely open and allows food through. Great. But there are little pockets just above the cricophyrangeal muscle, that collects food, and then automatically empties it. But, now those pockets are not able empty the food. And unfortuantely, those pockets are very close to where the esphogus and the airway meet, and so if food pools up, it easily flips up and goes down the airway instead.
So now what...that is a good question. We have quite the team of specialists working on him..a feeding specialist, an OT, a pediatrician, ENT specialist, a pediatric surgeon, and soon a GI specialist. Its fantastic to have this many resources...but they tend to all have a different opionion on what the next step should be. We are still waiting for the final report from the test, but the OT thinks that maybe the botox weaked that pockets ability to empty..the ENT specialist, says that scenario isn't even possible. So then they think that maybe his soft palete isn't creating a complete seal with the tongue/back of the throat, and is preventing the swallow reflex to really kick in. If we he were an adult, they would have him do certain exercies with his tongue and how he turns his head to get the reflex to kick in.But obviously they can't do that with him.
So the current plan is that we wait a month, and let him gain weight and get stronger, assuming that everything will just improve with time. He has barely gained a pound since he was born..so they are a little concerned about that. After a month, we will do another swallow study.
The problem is that is such a rare condition, that they really don't know what to do with it. Our peditrican mentioned that he is the first case of this condition, in her entire 30 years of practicing. This is only the second case that the ENT specialist has seen. So honestly, they truely don't know quite what to do.
So back to the reflux...we can't just let it go, and deal with it, because the presense of constant acid in the throat will eventually lead to esphogeal cancer. So something has to be done. We are adjusting his feeding schedule to see if we can get his stomach to empty more rapidly. We are also now giving him mylanta through his G-tube, so that when he does reflux, the mylanta will at least slightly coat his throat and now hurt as badly. That seems to have helped to some degree, especially yesterday. He sat in his bouncer for an entire half hour, and he was awake for hours after that, and was happy. This morning he was still doing great. This afternoon hasn't been quite as good, but overall better. So what do they about the reflux. I guess there is another test that involves measuring the acidity level in his throat over a 24 hour period, in order to obtain a clinical diagnosis. Then there are two options. Option 1 is a J-tube, which essentially extends his current G-tube into his intestines,and skips the stomach completely, thus preventing reflux. The downside is that VERY commonly the tubes wiggles itself back into the stomach, espicially if the baby moves a lot..well HELLO of course he is going to move. So the likelyhood of that being a resonable solution is very small, but there is a chance. The other option is a fundoplication, where they take the very top part of the stomach and wrap it around the base of the esphogus creating a little band around it. As he eats, his stomach would fill up, and the band would fill up as well, causing the band to get smaller, essentially closing off the bottom of the esphogus. The end result is that food CANNOT get back up into the throat. So he would not be PHYSICALLY CABALBE of throwing up, possibly for forever. If he has the flu in the future, he wouldn't be able to throw up. There is a chance as he gets older, that the effectivness would decrease but not usually. It is a very effective solution, but it is another surgery, more anesthesia, more risk..but surgery vs. the risk of cancer. I don't know. I'm still trying to figure out this problem in my head.
Now for the ups...which although few in quanitity, make up for the downs a millions times over. Since we have been able to slightly reduce the pain in his throat, we have been able to enjoy the content, sweet, quiet personality inside this little guy. This morning, he smiled at Kyra for the first time, and she just melted. This afternoon, I held Carter up in the sky, and said "Its SUPER BABY!" Kyle spent the rest of the afternoon "getting stuck" in various places so that Super Baby could come rescue him. I love those moments...seeing the bond that is forming between siblings.
Karl recently asked "Well most trials are given to us to help us learn something...do you think we have learned it yet?" Have we learned it yet? I'm not sure. What I have learned is first, it can always be worse. Ultimately, its just food. Its just...food. Its not air, its not his heart, its not a major organ...its just food.
But the one thing that has really hit me last couple days is the fact that we can waste so much time waiting for life to come...
Once we get the pay raise, life will be good.
Once we get a new car, life will be good.
Once we move, life will be good.
All we need is a vaction, and then life will be good.
Once we get past this test, we will figure everything out, and life will be good.
Once we do this produre, life will be good.
Once he can eat, life will be good.
These two months have been full of ups and downs. In a lot of ways we have been feeling, that we just have to get past one more week, just one more procedure, just one more surgery, just one more test and then all of his problems will be solved. I think we are slowly coming to the realization that we will be working on this for months and probably years to come. And, I think we have accepted that...we can do it..we will make it work. Not that we were ever in denial about the situation...I think we were simply...hoping.
I think my mind, my life, has been so wrapped up with waiting for the lastest results, that I'm missing a lot of the little things that make life pretty darn good right now. I wonder how many little smiles, or super baby moments I have disvalued, because I just have been trying to get to the next big step. I hope that I will be able to notice more of those moments and enjoy them as they come. Speaking of moments, here are a couple,that our sweet friend Eloise were able to capture for us!
Anyway, we had another swallow study and a GI test done this last Wednesday. The GI test was to see how severe his reflux is, because they can't just see him reflux, they have to have clincal proof, before they can do anything more than medication. The only problem is that they can't give him straight formula, they have to mix it with Barium, so that the milk appears on X-ray. The barium makes the milk really thick and so it kind of sinks at the bottom of the stomach. So during the 1 MINUTE that the specialist was looking at the GI films, Carter didn't reflux, and concluded that Carter doesn't relux. So that was really frustrating.
Now the swallow study..we went into the test, thinking that by the end of the test we would be given the go ahead to feed him orally. That was not the case :( Well the muscle is completely open and allows food through. Great. But there are little pockets just above the cricophyrangeal muscle, that collects food, and then automatically empties it. But, now those pockets are not able empty the food. And unfortuantely, those pockets are very close to where the esphogus and the airway meet, and so if food pools up, it easily flips up and goes down the airway instead.
So now what...that is a good question. We have quite the team of specialists working on him..a feeding specialist, an OT, a pediatrician, ENT specialist, a pediatric surgeon, and soon a GI specialist. Its fantastic to have this many resources...but they tend to all have a different opionion on what the next step should be. We are still waiting for the final report from the test, but the OT thinks that maybe the botox weaked that pockets ability to empty..the ENT specialist, says that scenario isn't even possible. So then they think that maybe his soft palete isn't creating a complete seal with the tongue/back of the throat, and is preventing the swallow reflex to really kick in. If we he were an adult, they would have him do certain exercies with his tongue and how he turns his head to get the reflex to kick in.But obviously they can't do that with him.
So the current plan is that we wait a month, and let him gain weight and get stronger, assuming that everything will just improve with time. He has barely gained a pound since he was born..so they are a little concerned about that. After a month, we will do another swallow study.
The problem is that is such a rare condition, that they really don't know what to do with it. Our peditrican mentioned that he is the first case of this condition, in her entire 30 years of practicing. This is only the second case that the ENT specialist has seen. So honestly, they truely don't know quite what to do.
So back to the reflux...we can't just let it go, and deal with it, because the presense of constant acid in the throat will eventually lead to esphogeal cancer. So something has to be done. We are adjusting his feeding schedule to see if we can get his stomach to empty more rapidly. We are also now giving him mylanta through his G-tube, so that when he does reflux, the mylanta will at least slightly coat his throat and now hurt as badly. That seems to have helped to some degree, especially yesterday. He sat in his bouncer for an entire half hour, and he was awake for hours after that, and was happy. This morning he was still doing great. This afternoon hasn't been quite as good, but overall better. So what do they about the reflux. I guess there is another test that involves measuring the acidity level in his throat over a 24 hour period, in order to obtain a clinical diagnosis. Then there are two options. Option 1 is a J-tube, which essentially extends his current G-tube into his intestines,and skips the stomach completely, thus preventing reflux. The downside is that VERY commonly the tubes wiggles itself back into the stomach, espicially if the baby moves a lot..well HELLO of course he is going to move. So the likelyhood of that being a resonable solution is very small, but there is a chance. The other option is a fundoplication, where they take the very top part of the stomach and wrap it around the base of the esphogus creating a little band around it. As he eats, his stomach would fill up, and the band would fill up as well, causing the band to get smaller, essentially closing off the bottom of the esphogus. The end result is that food CANNOT get back up into the throat. So he would not be PHYSICALLY CABALBE of throwing up, possibly for forever. If he has the flu in the future, he wouldn't be able to throw up. There is a chance as he gets older, that the effectivness would decrease but not usually. It is a very effective solution, but it is another surgery, more anesthesia, more risk..but surgery vs. the risk of cancer. I don't know. I'm still trying to figure out this problem in my head.
Now for the ups...which although few in quanitity, make up for the downs a millions times over. Since we have been able to slightly reduce the pain in his throat, we have been able to enjoy the content, sweet, quiet personality inside this little guy. This morning, he smiled at Kyra for the first time, and she just melted. This afternoon, I held Carter up in the sky, and said "Its SUPER BABY!" Kyle spent the rest of the afternoon "getting stuck" in various places so that Super Baby could come rescue him. I love those moments...seeing the bond that is forming between siblings.
Karl recently asked "Well most trials are given to us to help us learn something...do you think we have learned it yet?" Have we learned it yet? I'm not sure. What I have learned is first, it can always be worse. Ultimately, its just food. Its just...food. Its not air, its not his heart, its not a major organ...its just food.
But the one thing that has really hit me last couple days is the fact that we can waste so much time waiting for life to come...
Once we get the pay raise, life will be good.
Once we get a new car, life will be good.
Once we move, life will be good.
All we need is a vaction, and then life will be good.
Once we get past this test, we will figure everything out, and life will be good.
Once we do this produre, life will be good.
Once he can eat, life will be good.
These two months have been full of ups and downs. In a lot of ways we have been feeling, that we just have to get past one more week, just one more procedure, just one more surgery, just one more test and then all of his problems will be solved. I think we are slowly coming to the realization that we will be working on this for months and probably years to come. And, I think we have accepted that...we can do it..we will make it work. Not that we were ever in denial about the situation...I think we were simply...hoping.
I think my mind, my life, has been so wrapped up with waiting for the lastest results, that I'm missing a lot of the little things that make life pretty darn good right now. I wonder how many little smiles, or super baby moments I have disvalued, because I just have been trying to get to the next big step. I hope that I will be able to notice more of those moments and enjoy them as they come. Speaking of moments, here are a couple,that our sweet friend Eloise were able to capture for us!
Monday, March 8, 2010
I guess it worked...
Kyra has really been going through some growing pains lately. She seemed to have gained a new level of emotions and has been trying to figure out how to control them. She has been really sensitive and seemed to be lacking self confidence (which just killed me.) Also, she has been having seperation issues, when I drop her off at Primary. Well I recently, borrowed a parenting book from a friend, and it had some ideas on how to build your childs self confidence. So I've been trying a couple techniques, not really knowing if they were working or not.Well, this past Sunday was fast sunday. Kyra asked if she could bear her testimony. While she was waiting her turn she said "I'm going to say this, and this, this and this, and that, and this and this...." I had her pick just three. Well she did great! I was really proud of her, for bearing her testimony all by herself. I thought to myself...wow I guess of those parenting techinques worked! She seems so much more comfortable in her own skin :) Well, then after church just before I went to pick up Kyra from Primary, the Primary President pulled me aside and says she has to tell me something. Apparently, Kyra, at the beginning of Primary, went up to the President and asked if she could sing a song to the Primary. Well not really knowing what to say, she just said "Um..sure!" So they had the prayer, scripture and talk, and then Kyra went up to the front of the room. She requested that the piano player play the first verse to "I love to see the Temple". She then proceeded to sing the entire first verse, into the microphone, to the entire primary! When she finished she jumped down, found her seat and was happy as a peach the rest of the time. What??? Is she going to want to do that each week??? What do I do with my little American Idol tryout now??? Here is a new picture of our sweet girl!
Sunday, February 21, 2010
Grab the baby and RUN!
After 37 very long days, Carter is home!
Could these two look anymore like twins???
Kyra is so excited!!
We are so glad our little guy is home! The biggest adjustment is feeding him. He has to eat every 3 hours, but it takes him an hour and a half to eat...so that leaves only 90 min between feedings. Then it takes about 30 min to set up the feeds...so I think I'm going to learn to be very productive during that 1 hour break! But at least, he will be on a continuous feed from midnight to 6 am...so as long as he sleeps during those times, then we will be able to sleep as well. We have an appointment with the ENT specialist in about a week, and then he will have either another dilation, or a botox injection in about 2 weeks. We will also meet with the feeding specialist in about a week. He then will go back to the surgeons office in about 6 weeks, and get his long GT replaced with a MiKey button. They work the same way, just one is a long tube and the other is a little button looking thing that lies flat. But we will worry about all of that tomorrow...for tonight we are just happy that all of us, our entire family is under one roof. Happy day :)
So far Carter seems to loves his swing. Here he is just chillin'. On the floor is his pulse ox monitor, which we are supposed to have on him when he is sleeping, especially if we aren't holding him, so that if he starts choking, an alarm sounds.
Could these two look anymore like twins???
Kyra is so excited!!
We are so glad our little guy is home! The biggest adjustment is feeding him. He has to eat every 3 hours, but it takes him an hour and a half to eat...so that leaves only 90 min between feedings. Then it takes about 30 min to set up the feeds...so I think I'm going to learn to be very productive during that 1 hour break! But at least, he will be on a continuous feed from midnight to 6 am...so as long as he sleeps during those times, then we will be able to sleep as well. We have an appointment with the ENT specialist in about a week, and then he will have either another dilation, or a botox injection in about 2 weeks. We will also meet with the feeding specialist in about a week. He then will go back to the surgeons office in about 6 weeks, and get his long GT replaced with a MiKey button. They work the same way, just one is a long tube and the other is a little button looking thing that lies flat. But we will worry about all of that tomorrow...for tonight we are just happy that all of us, our entire family is under one roof. Happy day :)
Friday, February 12, 2010
1 month old!
Yesterday our little man turned 1 month old!
He is 7 lbs 7 oz (he was up to 7 lbs 15 oz, but lost some weight since his surgery). He has now been in the hospital 30 days. :( We got moved to a different "pod" (rooms of the NICU). Yesterday 3 babies in the pod went home, so hopefully his turn is next! He is recovering well, we just have to wait for him to go 5 days without a brady. He was on day 4, and then because of the anesthesia had 11 one of the days, and then about 5 or so the next. So we are on day 2 of 5 now. Here are a couple pics, and a little video.
This seems to be starting to really take its toll on Kyra. She is having some seperation anxiety issues, so hopefully Carter will be home soon, or Kyra might have a nervous breakdown!
He is 7 lbs 7 oz (he was up to 7 lbs 15 oz, but lost some weight since his surgery). He has now been in the hospital 30 days. :( We got moved to a different "pod" (rooms of the NICU). Yesterday 3 babies in the pod went home, so hopefully his turn is next! He is recovering well, we just have to wait for him to go 5 days without a brady. He was on day 4, and then because of the anesthesia had 11 one of the days, and then about 5 or so the next. So we are on day 2 of 5 now. Here are a couple pics, and a little video.
This seems to be starting to really take its toll on Kyra. She is having some seperation anxiety issues, so hopefully Carter will be home soon, or Kyra might have a nervous breakdown!
Wednesday, February 10, 2010
One step closer to home
Carter had his balloon dilation of the muscle in his throat last week. The swallow study showed that there was some improvment, but that he will probably will still need another dilation or a botox (yes botox) injection in the future. The botox injection would essentially freeze the muscle in an open position. I know...it sounds funny. But they think there is still a second issue, that being that he doesn't really have the suck-swallow-breathe reflex. Just to be sure they ran every blood test under the sun and also had a CT scan and additional X-rays, and everything came back normal. So today they did surgery to insert a G-tube. A G-tube is a tube that is inserted directly into the stomach, and then comes out through the skin just below his rib cage. This way you can put food into the tube, and it goes directly into the stomach until the issues in the throat or mouth are resolved. So instead of sitting in the hospital for the next six months while we try and "teach" him how to swallow, the G-tube allows us to go home with him, and persue outpatient occupational therapy. I'm honestly nervous about dealing with the tube. It is a rather long, stiff tube that sticks straight out. So I'm not sure how that works with clothes, or how to hold him, etc. But I'm assured that we will be taught everything about it. Supposedly it doesn't hurt him at all, he can still have tummy time and can even go swimming with it. I think it is just the unknown that has me nervous. So there are two things that we are waiting for, in order for us to come home. He has to keep his heartrate and his breathing up for 5 days without a single brady (drop). Right now he is on day 3 of 5. Second, he simply has to heal from the surgery. So how long do we have to deal with the G-tube? It really depends on how quickly he learns the swallow reflex. Some kids its a couple months, others years. We are INCREDIBLY BLESSED to have the NATIONS leading pediatric feeding specialist right here in Tucson. I spoke with her yesterday, and she really seems fantastic, so we are really excited to meet with her next week and get the ball rolling on his therapy (although best in the nation doesn't come cheap. Ugh.).
The rest of us are finally feeling better as well. Kyra got a UTI, but seems to be doing much better. Kyle was still limping quite a bit (he feel off a ledge at the zoo), and was missing steps, and was walking on his tippy toes so I took him back to the pediatrican who referred him to an orthopedic specialist. I took him to Dr. Nielsen, who asked Kyle to do various things..like run across the room, jump up and down, touch his toes, stand on one foot etc. Kyle who has been limping for 3 WEEKS preformed like a little circus monkey. He did everything the doctor asked without any indication that there was a problem with his foot. Little stinker! So obviously the doctor was like "Um, well um...he seeeeems fine." And I look like a crazy!
The rest of us are finally feeling better as well. Kyra got a UTI, but seems to be doing much better. Kyle was still limping quite a bit (he feel off a ledge at the zoo), and was missing steps, and was walking on his tippy toes so I took him back to the pediatrican who referred him to an orthopedic specialist. I took him to Dr. Nielsen, who asked Kyle to do various things..like run across the room, jump up and down, touch his toes, stand on one foot etc. Kyle who has been limping for 3 WEEKS preformed like a little circus monkey. He did everything the doctor asked without any indication that there was a problem with his foot. Little stinker! So obviously the doctor was like "Um, well um...he seeeeems fine." And I look like a crazy!
I unfortuantly got a yeast infection in both breasts, which for me was more painful then labor! I love my OB..she didn't make me schedule an appointment, and come in for an exam, she simply just called in a prescription..so I'm feeling MUCH better now.
We are so grateful for all the help we have recieved from our friends and family. They have really gone above and beyond. They have babysat non stop for HOURS at a time. My mom has pretty much been almost a 24 hour babysitter for the past month. Kyra has been given rides to and from preschool every day. Also, friends have come and dropped off little gift for the kiddos to help keep them occupied, or have taken them out for a fun activities. Not to mention the meals provided by the RS and friends. We are so grateful!
Here are some picture from the surgery today.
Carter waiting for his field trip to the first floor. We love seeing that little face without any tape or tubes on it. This little guy loves his bink! 
This is shortly after surgery. The anesthesia knocked this kiddo out! It took forever for him to wake up, and he tried to freak mommy and daddy out by deciding he would rather sleep then breathe!! Here he is chilling under the warmer. You can see the tube. He will be sporting this tube for about 8 weeks, until everything heals really well. Then he will get a "Mickey Button", which is a flat little valve, no tube. 
There are those little eye's...he finally woke up..only like 3 hours after surgery! Silly guy!
This is shortly after surgery. The anesthesia knocked this kiddo out! It took forever for him to wake up, and he tried to freak mommy and daddy out by deciding he would rather sleep then breathe!! Here he is chilling under the warmer. You can see the tube. He will be sporting this tube for about 8 weeks, until everything heals really well. Then he will get a "Mickey Button", which is a flat little valve, no tube. There are those little eye's...he finally woke up..only like 3 hours after surgery! Silly guy!Thursday, February 4, 2010
What am I going to do with her...
Lately Kyra has had a problem with tattle tailing. Well this morning, Kyra came running in and started yelling "Mommy hurry, Kyle is eating chocolate. Go get him." I just recently read a book about a new dicipline technique, that is supposed to help with tattle tailing. So I thought I would give it a shot. I went through the technique and at the end of it told her no tattle tailing, and she ran off to play. She came back about 30 seconds later, and yelled "Mommy Kyle is STILL eating chocolate". I went through the technique again and said "Kyra no tattle tailing". She ran off to play. Again, Kyra came back about 30 seconds later, but this time, with a sly little smile, she said "Mommy, I love you. When you get done stopping Kyle from being super naughty and eating chocolate will you color with me?" It only took her about 2 minutes to find a loop hole in that technique.
Carter is still having some issues. He had surgery yesterday to open his esophogius, but is still having a lot of problems with his heart rate dropping (they call it Brady's) and not breathing quite right. The docotors really don't have a real solid idea of what is going on. So he had a million and one blood tests done last night, and a upper body CT scan this afternoon. We should get those results tomorrow morning. Then he will have another swallow study tomorrow. I took both kiddos back to the pediatrician this afternoon. Kyra has a UTI, but is now on antibiotics, and she is going to refer Kyle to an orthopedic specialist for his foot. So hopefully we will figure that out soon.
Carter is still having some issues. He had surgery yesterday to open his esophogius, but is still having a lot of problems with his heart rate dropping (they call it Brady's) and not breathing quite right. The docotors really don't have a real solid idea of what is going on. So he had a million and one blood tests done last night, and a upper body CT scan this afternoon. We should get those results tomorrow morning. Then he will have another swallow study tomorrow. I took both kiddos back to the pediatrician this afternoon. Kyra has a UTI, but is now on antibiotics, and she is going to refer Kyle to an orthopedic specialist for his foot. So hopefully we will figure that out soon.
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