This one will be pretty quick because there's really not much to update. My favorite part of the day was when Jeffrey asked to hold his baby brother. It was the first time he's shown interest, so I let him. I got some cute pictures for them to see later in life. Jeffrey is going to be an absolutely amazing big brother to this little boy. I am truly blessed with Jeffrey. How many three year olds will sit in the NICU for an hour and be content with it? Yeah, I'm spoiled!
Jaxson is eating anywhere from 0-20mL from a bottle when he is presented with it! He even took a few mL's for me tonight :) Not much, but I was happy to see him trying and taking some in.
Plus, we're in a much more comfortable room now! Jaxson no longer needs the attention he did before, so they moved him to a different floor. I gotta say, seeing Children's number pop up on my phone when they called to tell me was not fun. I never knew so many thoughts could go through my head in the 3 seconds it took for me to put the phone to my ear! But they were just letting me know that he was being moved to the second floor. So he shares a nurse with a few other babies because he doesn't need to have someone hovering over him 24/7, which means he's making progress.
The best part about this move is that he has his own room! It was so much easier to have Jeffrey there and be able to spend some time with both of my boys tonight. There's a chair and a couch and privacy for me to pump beside his bed instead of going into another room. There's a TV with a DVD/VCR player and I actually get a cell signal in there so I can handle business while I'm at the hospital. I can even shut the door if I need it to be quiet for whatever reason. I'm actually looking forward to taking a nap on the couch with a baby on my chest and a toddler by my side :) I won't have to feel quite so bad about spending time at the hospital if I can have Jeffrey there with me.
Jaxson having his own room is a huge step. And I think it will really help his respiration rate. I've been praying for something like this because Jax reacts to every stressor in a room. Anytime another baby would cry, monitors would go off or alarms would sound, Jaxson's breathing went through the roof. I can't wait to see how quickly he improves his breathing now that the bulk of those stressors have been removed!
Other than that, there's nothing new to report on Mr. Jaxson. His mom might have a nervous breakdown before this is all over, but he's doing great. So much better than anyone expected and for that I am extremely grateful. I think we're still looking at it being weeks before he comes home, but today I am able to take a step back and be thankful for the baby steps he has taken. And for the things that could have been that would have made this so much worse that aren't happening. Now I just want to focus on bringing him home as soon as he's ready, and helping him however I can to get that done. We're all ready!
Saturday, July 21, 2012
Friday, July 20, 2012
VCUG Results
When I got to the hospital this morning, Jaxson was in the hallway being taken somewhere. I sort of flipped out because I forgot about his test, and then the nurses reminded me that he was going for his VCUG to check his kidney. Thankfully, the doctor came by right before I left and told me that everything came back normal! For once, we got good news. He does not have any reflux issues with having two ureters, which means he's not at any additional risk for urinary tract or kidney infections. I think that urology and nephrology are still going to look at it to decide if anything will ever need done about it, but I can tell you from this whole experience that if anything is going to be done, it won't be until there's a problem to fix. Since there isn't a problem right now, I'm sure they'll just leave it alone.
In other good news, Jaxson took 20mL's twice and 13mL's once from a bottle during the night! That's huge for my little guy, considering he had taken 10 at most before and averaged closer to 5. I also talked to OT about his feeding schedule because I was not comfortable with them trying to feed him a bottle at every feed. He's having a hard enough time as it is, and I felt that it would stress him out too much to have that happen. My OT just kind of smiled and agreed with me. She had them change his schedule to four times a day and only when he shows interest in eating. So they'll look for feeding signs like eating his hands, being wide awake, sucking on his pacifier, and being cooperative during his care sessions. That made me feel much better and I think he'll improve faster and take more food if he isn't forced to take a bottle all the time.
So Jaxson had this great day and I got to stay for a few extra hours thanks to my sweet mother-in-law who watched Jeffrey for us. I was in a pretty good mood and had a good time just chilling out with Jeffrey. Then reality sunk in and I pulled up my bank account to see what bills I needed to pay, only to discover that my disability company totally messed up my paycheck. I should get at least 5 weeks at full pay and the rest at 60%, but it looks like I only got 60% this time for some reason. That triggered another break down and phone call to my amazing mom who calmed me down and told me that we would figure something out. I can always rely on my family to help me out Ina pinch and I'm so lucky for that. This was one stressor that I did not need!
Now I'm just getting Jeffrey to bed, with me as seems to be the MO lately, and trying to keep it together. Jeffrey is such a great little boy. He knows mommy is having a rough night and he's being so good. Well, as good as a three year old can be haha. He's trying at times, but he usually knows when it's time to listen and not push buttons. I am extremely blessed to have such an intuitive and perceptive little boy.
I'm blessed in so many ways. Sometimes it's hard to see through all the muck, and it doesn't mean that I will be happy all the time, but it certainly makes things easier to handle when I remember that I have so much support. I just have to learn to lean on people and use the support that I have instead of trying to do it all by myself. So please, feel free to send me friendly reminders when I start to sound like a crybaby! Even if I don't lean on you, it will remind me that you are there and sometimes that's all I need.
In other good news, Jaxson took 20mL's twice and 13mL's once from a bottle during the night! That's huge for my little guy, considering he had taken 10 at most before and averaged closer to 5. I also talked to OT about his feeding schedule because I was not comfortable with them trying to feed him a bottle at every feed. He's having a hard enough time as it is, and I felt that it would stress him out too much to have that happen. My OT just kind of smiled and agreed with me. She had them change his schedule to four times a day and only when he shows interest in eating. So they'll look for feeding signs like eating his hands, being wide awake, sucking on his pacifier, and being cooperative during his care sessions. That made me feel much better and I think he'll improve faster and take more food if he isn't forced to take a bottle all the time.
So Jaxson had this great day and I got to stay for a few extra hours thanks to my sweet mother-in-law who watched Jeffrey for us. I was in a pretty good mood and had a good time just chilling out with Jeffrey. Then reality sunk in and I pulled up my bank account to see what bills I needed to pay, only to discover that my disability company totally messed up my paycheck. I should get at least 5 weeks at full pay and the rest at 60%, but it looks like I only got 60% this time for some reason. That triggered another break down and phone call to my amazing mom who calmed me down and told me that we would figure something out. I can always rely on my family to help me out Ina pinch and I'm so lucky for that. This was one stressor that I did not need!
Now I'm just getting Jeffrey to bed, with me as seems to be the MO lately, and trying to keep it together. Jeffrey is such a great little boy. He knows mommy is having a rough night and he's being so good. Well, as good as a three year old can be haha. He's trying at times, but he usually knows when it's time to listen and not push buttons. I am extremely blessed to have such an intuitive and perceptive little boy.
I'm blessed in so many ways. Sometimes it's hard to see through all the muck, and it doesn't mean that I will be happy all the time, but it certainly makes things easier to handle when I remember that I have so much support. I just have to learn to lean on people and use the support that I have instead of trying to do it all by myself. So please, feel free to send me friendly reminders when I start to sound like a crybaby! Even if I don't lean on you, it will remind me that you are there and sometimes that's all I need.
Thursday, July 19, 2012
More Tests, More Potential Problems
I think I should have had my tubes tied when I had my C Section. I am almost certainly never having another child after this one! Not just because of all of his health issues that are going to require lots of attention, but because when you have a child with birth defects, the chances of having another with birth defects goes up. And if the doctors come back and tell me there's anything else going on with this baby, someone is going to have to check me in to the looney bin.
So today I got to speak with the doctors during rounds again. They decided that since Jaxson will not be undergoing any major surgeries while he's there, they are not going to test for prothrombin gene mutation at this time. Jaxson will have a consult with the hematology department after he's discharged and before he has his craniosynostosis (skull) surgery. Which is absolutely fine with me, I was more concerned that they knew about it in advance. That test only takes a day or two to come back, so I'm not concerned that they aren't doing it now.
That was the easy part. Then they told me that genetics wants to test for something called Crouzon Syndrome. They're testing for it because of the premature sutures of his skull bones combined with his cleft palate and other things. He may not have it, it could be that he just has these defects, but they're testing for it just to be sure. They're looking for the "why" of why he has all of these problems, and that's the most common that matches his symptoms. If it comes back negative, they might look for something else or just say that there's no genetic disorder. The syndrome is basically a protein deficiency in his bones that could cause other problems during growth, but I haven't had much time to look further into it yet. I'm not digging too much until I know for sure if he has it or not.
Then they reminded me that he has his follow up renal (kidney) ultrasound today, which they did this morning. I got a phone call with the results. The cyst that was on his right kidney either wasn't really there before or it resolved itself because it's gone. Which is great news. But his left kidney has a problem: two ureters instead of one. The ureter is the tube where the urine travels from the kidney to the bladder. When there are two, there's a chance that some of that can go back up into the kidney, which raises the potential for kidney and urinary tract infections. He'll undergo a test tomorrow to see if that is happening or not and if it is, he will just come home on an antibiotic. I'll find out in the morning if there's a long-term issue that will have to be dealt with by urology or if it's just something he has to deal with.
The final thing they decided today was to try and take him off of his oxygen. After his noon feeding, they pulled the prongs out of his nose to see how he would do. It didn't last long. His oxygen saturation dropped into the 70s (they like it over 90), so he's back on the 0.1 liter until they think he's ready to try again. The doctor said that there could be an obstruction in his airway causing him to have trouble breathing. They really don't think it's a development issue with his lungs because he wasn't that early. We have to get the ENT team involved to check that out and if there is an obstruction we need to find out where it is and how big to determine if anything is to be done about it or not.
So in good news, Jaxson has been presented with a bottle a lot more often and is starting to eat on a more regular basis. It's not a lot, but as long as he's trying I'm good with that. They're also fortifying my milk with a tiny bit of powdered formula and iron to give him more calories. The result? He's up an ounce over yesterday to 6 lbs, 2.2 oz. hopefully he continues on that trend and keeps getting stronger and eating more on his own.
I pretty much just shake my head when they tell me things now. The thing is, nothing that he has going on is life threatening or needs to be dealt with immediately. Which is great, but the next 2 years are going to play hell on my nerves and probably cause me to go gray. I'm glad that Jaxson's issues are fixable, and I'm really happy that he didn't have to have heart surgery right away like initially anticipated. I just wish that God would quit throwing curve balls at me. Every time I think I have a handle on the situation, something else comes up. So now I just shrug, shake my head and try not to laugh. Because what else can I do?
So today I got to speak with the doctors during rounds again. They decided that since Jaxson will not be undergoing any major surgeries while he's there, they are not going to test for prothrombin gene mutation at this time. Jaxson will have a consult with the hematology department after he's discharged and before he has his craniosynostosis (skull) surgery. Which is absolutely fine with me, I was more concerned that they knew about it in advance. That test only takes a day or two to come back, so I'm not concerned that they aren't doing it now.
That was the easy part. Then they told me that genetics wants to test for something called Crouzon Syndrome. They're testing for it because of the premature sutures of his skull bones combined with his cleft palate and other things. He may not have it, it could be that he just has these defects, but they're testing for it just to be sure. They're looking for the "why" of why he has all of these problems, and that's the most common that matches his symptoms. If it comes back negative, they might look for something else or just say that there's no genetic disorder. The syndrome is basically a protein deficiency in his bones that could cause other problems during growth, but I haven't had much time to look further into it yet. I'm not digging too much until I know for sure if he has it or not.
Then they reminded me that he has his follow up renal (kidney) ultrasound today, which they did this morning. I got a phone call with the results. The cyst that was on his right kidney either wasn't really there before or it resolved itself because it's gone. Which is great news. But his left kidney has a problem: two ureters instead of one. The ureter is the tube where the urine travels from the kidney to the bladder. When there are two, there's a chance that some of that can go back up into the kidney, which raises the potential for kidney and urinary tract infections. He'll undergo a test tomorrow to see if that is happening or not and if it is, he will just come home on an antibiotic. I'll find out in the morning if there's a long-term issue that will have to be dealt with by urology or if it's just something he has to deal with.
The final thing they decided today was to try and take him off of his oxygen. After his noon feeding, they pulled the prongs out of his nose to see how he would do. It didn't last long. His oxygen saturation dropped into the 70s (they like it over 90), so he's back on the 0.1 liter until they think he's ready to try again. The doctor said that there could be an obstruction in his airway causing him to have trouble breathing. They really don't think it's a development issue with his lungs because he wasn't that early. We have to get the ENT team involved to check that out and if there is an obstruction we need to find out where it is and how big to determine if anything is to be done about it or not.
So in good news, Jaxson has been presented with a bottle a lot more often and is starting to eat on a more regular basis. It's not a lot, but as long as he's trying I'm good with that. They're also fortifying my milk with a tiny bit of powdered formula and iron to give him more calories. The result? He's up an ounce over yesterday to 6 lbs, 2.2 oz. hopefully he continues on that trend and keeps getting stronger and eating more on his own.
I pretty much just shake my head when they tell me things now. The thing is, nothing that he has going on is life threatening or needs to be dealt with immediately. Which is great, but the next 2 years are going to play hell on my nerves and probably cause me to go gray. I'm glad that Jaxson's issues are fixable, and I'm really happy that he didn't have to have heart surgery right away like initially anticipated. I just wish that God would quit throwing curve balls at me. Every time I think I have a handle on the situation, something else comes up. So now I just shrug, shake my head and try not to laugh. Because what else can I do?
Wednesday, July 18, 2012
Surgery Info and Timeline
I almost deleted my last post because it sounded whiny. Almost. Then I realized that I need to keep track of how I'm feeling, so it's good to keep those posts and look back on it. I did start to feel better after I wrote it, though, which is the purpose of this blog, so that's a good thing. And I'm feeling better today than I have in a few days. Mostly because I got more information as far as Jaxson's surgeries go. And, thanks to a friend of mine, I got my hair done for free this morning. My hair has gotten darker since I've had kids, and I'm definitely blonde again :)
So, Jaxson has three surgeries planned for the next year. In the next couple of months he will undergo skull surgery. Disclaimer: some of the information from here on out may be hard to read. I met with the plastic surgeon today to discuss the process for his skull surgery. There is a team of doctors that will be aware of what is going on, and aside from the plastic surgeon, the neurosurgeon will be in the operating room when the time comes. Each doctor will be watching their own part as well as watching each other and communicating through the whole procedure. The plastic surgeon will make an incision that stretches over top of Jaxson's head from ear to ear. It will be hidden by his hair that way, which is nice. They then remove the fused bones and put them back how they go. He will need a blood transfusion and there are risks with the surgery, but not as many risks as not doing it. The good news is that I have the same blood type as Jaxson, so I could be a potential donor. We have a request in to hematology to have a consultation as well as to have him tested for my gene mutation that causes clotting. The skull surgery will take about 4.5 hours and he'll spend 4 days in the hospital recovering. The biggest complaint that most children have is that within 24 hours after the surgery, their eyes swell shut for two days. On the 4th day, when their eyes open back up, is when they get to come home. This is the surgery that worries me the most. It will be his first one and it's a pretty scary procedure given what they have to do. I fully trust the doctors that I met with today and I know Jax will be in good hands, but it's still scary as a mom to know that something like this is in her child's future.
The next surgery will be his spinal surgery. I have not met with neurosurgery yet, so I'm ot sure of anything with this one. I just know it takes place around six months of life and has become a more routine surgery over the years. I'm sure I'll have concerns about this one later, but for now it's just waiting to meet with the doctor.
Jaxson's third and (hopefully) final surgery will be to fix his cleft. This one will take place between 10 and 12 months. The doctor who does Jaxson's skull surgery will be the same doctor who fixes his cleft. They call it a partial cleft because it doesn't go all the way to his lip, and when they go in to fix it, they will just basically sew it together. Right now, the reason he's having trouble eating is because when he tries to suck, he can't create enough negative pressure. It's basically like sucking through a straw that has a hole in it. Which would severely annoy me and piss me off. So I'm trying to be patient and work with him with occupational therapy, and someone els from the cleft team is going to come and help work with me on his feeds.
Poor little Jaxson is going to have a rough first year. But you know what? It could have been worse. It could have been heart surgery number one in the books by this time with more in the future on top of everything else. So I'm trying to be grateful and thankful that he's not having to undergo more than what he has coming. It's still hard because my teeny little baby is going under the knife at such a young age and I'm having trouble wrapping my head around it. And then I consider that there's still a possibility of heart surgery in the future (although not in the first year) and it just makes me crazy to think of the hurdles Jaxson is going to have to overcome. He's got some good genes though. The Burks' and Sanderson's are nothing if not stubborn fighters, and Jaxson is already showing that he's got that fighting ability. And he's in the best place he can be right now, with some fantastic doctors helping him fight.
Today was a much better day than yesterday. And I have to realize that it's okay for me to break down. I cried on and off all day yesterday, and I'm not a crier. I'm not emotional. But this is my baby. And I am a mother, fully capable of loving my children more than life itself. And it's okay that I show them that. It's okay that I let my emotions show once in awhile. I am only human, and no matter how strong other people think I am, I know I am weak. But with the love and support of my family and friends, I can be strong. And with Jayson by my side, I can do anything.
So, Jaxson has three surgeries planned for the next year. In the next couple of months he will undergo skull surgery. Disclaimer: some of the information from here on out may be hard to read. I met with the plastic surgeon today to discuss the process for his skull surgery. There is a team of doctors that will be aware of what is going on, and aside from the plastic surgeon, the neurosurgeon will be in the operating room when the time comes. Each doctor will be watching their own part as well as watching each other and communicating through the whole procedure. The plastic surgeon will make an incision that stretches over top of Jaxson's head from ear to ear. It will be hidden by his hair that way, which is nice. They then remove the fused bones and put them back how they go. He will need a blood transfusion and there are risks with the surgery, but not as many risks as not doing it. The good news is that I have the same blood type as Jaxson, so I could be a potential donor. We have a request in to hematology to have a consultation as well as to have him tested for my gene mutation that causes clotting. The skull surgery will take about 4.5 hours and he'll spend 4 days in the hospital recovering. The biggest complaint that most children have is that within 24 hours after the surgery, their eyes swell shut for two days. On the 4th day, when their eyes open back up, is when they get to come home. This is the surgery that worries me the most. It will be his first one and it's a pretty scary procedure given what they have to do. I fully trust the doctors that I met with today and I know Jax will be in good hands, but it's still scary as a mom to know that something like this is in her child's future.
The next surgery will be his spinal surgery. I have not met with neurosurgery yet, so I'm ot sure of anything with this one. I just know it takes place around six months of life and has become a more routine surgery over the years. I'm sure I'll have concerns about this one later, but for now it's just waiting to meet with the doctor.
Jaxson's third and (hopefully) final surgery will be to fix his cleft. This one will take place between 10 and 12 months. The doctor who does Jaxson's skull surgery will be the same doctor who fixes his cleft. They call it a partial cleft because it doesn't go all the way to his lip, and when they go in to fix it, they will just basically sew it together. Right now, the reason he's having trouble eating is because when he tries to suck, he can't create enough negative pressure. It's basically like sucking through a straw that has a hole in it. Which would severely annoy me and piss me off. So I'm trying to be patient and work with him with occupational therapy, and someone els from the cleft team is going to come and help work with me on his feeds.
Poor little Jaxson is going to have a rough first year. But you know what? It could have been worse. It could have been heart surgery number one in the books by this time with more in the future on top of everything else. So I'm trying to be grateful and thankful that he's not having to undergo more than what he has coming. It's still hard because my teeny little baby is going under the knife at such a young age and I'm having trouble wrapping my head around it. And then I consider that there's still a possibility of heart surgery in the future (although not in the first year) and it just makes me crazy to think of the hurdles Jaxson is going to have to overcome. He's got some good genes though. The Burks' and Sanderson's are nothing if not stubborn fighters, and Jaxson is already showing that he's got that fighting ability. And he's in the best place he can be right now, with some fantastic doctors helping him fight.
Today was a much better day than yesterday. And I have to realize that it's okay for me to break down. I cried on and off all day yesterday, and I'm not a crier. I'm not emotional. But this is my baby. And I am a mother, fully capable of loving my children more than life itself. And it's okay that I show them that. It's okay that I let my emotions show once in awhile. I am only human, and no matter how strong other people think I am, I know I am weak. But with the love and support of my family and friends, I can be strong. And with Jayson by my side, I can do anything.
Tuesday, July 17, 2012
More Surgery
Before I get to Jaxson's update, I have to give a huge shout out to the newest addition to our family. Ariella Renee Luciana Bango was born this morning at 1:04am, weighing in at 6lbs, 4oz and 19 inches long. She's a beautiful, healthy, perfect little baby girl and I couldn't be happier for my sister!
Now back to Jaxson. The cleft team did not come down for his noon feeding today like I thought they were going to, so hopefully they'll come tomorrow. Jaxson refused to eat for me again today anyway, so it's probably not a bad thing. I also got the results of his CT scan. He does have bones fused together in his skull, so he'll have to have surgery to fix it. This will be surgery number 3 that little Jaxson will have to endure. I don't know when yet, I was a little in shock when the doctor was there that I didn't think to ask any questions. So I'm going to write down a bunch of questions and have Jayson talk to the doctors tomorrow while I get my hair done. I feel guilty about going to do that, but I'm being shoved out the door tomorrow morning so I'm going to try and enjoy it.
I feel like I'm losing my mind, that my baby is never going to get to come home. None of this is anyone's fault, it's just that things went wrong when Jayson and my genes got together. But why? I know everyone says that God won't give you more than you can handle, but He's really pushing it. Today is a tough day. I'm trying to write this and I can barely see what I'm doing. People ask how I'm doing and how I can stand to be away from my baby. Just like any mother, I can't. I just do what I have to. There's another little boy in my house that needs his mommy. I'm completely drained and exhausted. I need someone to come and clean my house and pay my bills.
The biggest question I have right now is what am I going to do if Jaxson is still in the hospital when I go bad to work? How am I going to balance being a mom of two boys that are in different places with working a full time job? I can't even handle it while I'm not working, I can't imagine what I will do when that changes.
And what about Jaxson? Is he going to need 24/7 medical care? How long is the recovery for these procedures he has to have? When does he have to have them? And what if he has to still have heart surgery down the road? And I don't even know if they've tested for my clotting disorder. If he has that on top of everything else, then what? J ust more questions to send with Jayson tomorrow I guess.
I can't even think straight right now. I'm just so worried about Jaxson it makes me sick. I'm at a total loss for what I'm supposed to do and how I'm supposed to act and feel. I just want to crawl in bed and forget everything. My emotions are so out of control right now and I think that's making a huge impact on me, I can usually control how I feel, but between the roller coaster of having a baby combined with worrying about that baby because of health issues, I'm not having much luck in the control department. Hopefully I'll get that under control as I get more answers.
On the bright side, it's lookng like this schedule I am working out with Jeffrey is gong to be great. He's been so much better and easier to handle the last few days that I'm hoping it continues if we can keep that up. He's such a resilient little boy and the light of my life. I'm trying to soak in every moment I can get with him while he'll let me.
I keep telling myself that tomorrow will be better. I just hope that's the case because I'm not sure how much more bad news I can take!
Now back to Jaxson. The cleft team did not come down for his noon feeding today like I thought they were going to, so hopefully they'll come tomorrow. Jaxson refused to eat for me again today anyway, so it's probably not a bad thing. I also got the results of his CT scan. He does have bones fused together in his skull, so he'll have to have surgery to fix it. This will be surgery number 3 that little Jaxson will have to endure. I don't know when yet, I was a little in shock when the doctor was there that I didn't think to ask any questions. So I'm going to write down a bunch of questions and have Jayson talk to the doctors tomorrow while I get my hair done. I feel guilty about going to do that, but I'm being shoved out the door tomorrow morning so I'm going to try and enjoy it.
I feel like I'm losing my mind, that my baby is never going to get to come home. None of this is anyone's fault, it's just that things went wrong when Jayson and my genes got together. But why? I know everyone says that God won't give you more than you can handle, but He's really pushing it. Today is a tough day. I'm trying to write this and I can barely see what I'm doing. People ask how I'm doing and how I can stand to be away from my baby. Just like any mother, I can't. I just do what I have to. There's another little boy in my house that needs his mommy. I'm completely drained and exhausted. I need someone to come and clean my house and pay my bills.
The biggest question I have right now is what am I going to do if Jaxson is still in the hospital when I go bad to work? How am I going to balance being a mom of two boys that are in different places with working a full time job? I can't even handle it while I'm not working, I can't imagine what I will do when that changes.
And what about Jaxson? Is he going to need 24/7 medical care? How long is the recovery for these procedures he has to have? When does he have to have them? And what if he has to still have heart surgery down the road? And I don't even know if they've tested for my clotting disorder. If he has that on top of everything else, then what? J ust more questions to send with Jayson tomorrow I guess.
I can't even think straight right now. I'm just so worried about Jaxson it makes me sick. I'm at a total loss for what I'm supposed to do and how I'm supposed to act and feel. I just want to crawl in bed and forget everything. My emotions are so out of control right now and I think that's making a huge impact on me, I can usually control how I feel, but between the roller coaster of having a baby combined with worrying about that baby because of health issues, I'm not having much luck in the control department. Hopefully I'll get that under control as I get more answers.
On the bright side, it's lookng like this schedule I am working out with Jeffrey is gong to be great. He's been so much better and easier to handle the last few days that I'm hoping it continues if we can keep that up. He's such a resilient little boy and the light of my life. I'm trying to soak in every moment I can get with him while he'll let me.
I keep telling myself that tomorrow will be better. I just hope that's the case because I'm not sure how much more bad news I can take!
Monday, July 16, 2012
Feeding Frustrations and Other Updates
What a weekend. Things have been so crazy with Sara going to ICU last week with clots in her arteries and trying to get Jaxson taken care of while juggling Jeffrey as Jayson bounces between two jobs. Yeah, it's a little nuts. Sara was finally induced this afternoon and should have her baby this evening, so tomorrow is going to be even crazier than today was!
Anyway, let me start with Jaxson. I have been getting increasingly frustrating with Jaxson's inability to eat because his respirations have been so high. He started out at 5mL and each day dropped to taking less and less. Today when I tried to feed him he didn't take anything at all. So I asked the doctors about it this morning and they still say there's nothing wrong with his lungs, but they agree that he should be recovering more by now. It's possible that there's a small obstruction blocking the flow of air, and that obstruction could be caused by his cleft. We won't know until someone from the cleft team comes down and talks to us. And that means that there is still no timeframe for him coming home. He has to be off of the oxygen (which I think is doing nothing at this point) and he has to eat his bottles consistently before they'll let him leave. It's so frustrating to watch him labor to breathe when he reacts to the bottle and he definitely wants it, but his little body just can't handle the challenge. As his mom I just want to do it for him and make it all better, but there's nothing I can do about this one.
In other news, we got some of his test results back. Hs chromosome count came back normal(yay!) but the genetic test they did showed that he had a deletion on chromosome 15. At this point, they don't think it means anything. Jayson and I have to go get tested to see if either of us have the same issue or if our genes could make that issue to determine the likelihood that it's actually a problem. The geneticist actually said that even if our tests don't show anything that they still don't think it's anything. People walk around with extra and missing chromosomes all the time and don't know it. And this test has only been around for 5-7 years, so a lot of times they get this information and don't really know what to do with it. He also wants to follow up with Jaxson and keep tabs on him because it's not horribly abnormal for a baby to be born with one major birth defect, but to have more than one is apparently an anomaly. He got the Sanderson gene for stumping doctors apparently! And they requested permission to take his picture and use it for research and publications. I have a cute kid, so I signed the consent form. If it can help another kid in the future, all the better.
After I left today, Jaxson had a very busy afternoon. The neurosurgeon came down and looked at him, but didn't say much to the nurse. Plastic surgery came down and looked at him too and someone from their team will be back tomorrow at noon to chat with me. He got taken down to have the CT scan on his skull, so hopefully I'll have the results for that tomorrow as well. Then, since he didn't cooperate at noon, OT came back at 3 to feed him again and wouldn't you know he ate 10mL for her! Little brat haha. I'm so happy that he did well! I know it was because he was more relaxed and his breathing was unr control, which also shows that he CAN do it. Just gotta get that breathing down and he'll be taking a full bottle in no time :)
So after my weekend frustrations, I got some answers today and Jaxson made a bit more progress. I think they're still going to do an MRI on his brain and spine before he leaves, unless they included that in the CT today. It was a good day for Jaxson and I've got a plan for a routine for Jeffrey and I. Mornings at Children's and afternoons with Jeffrey. Jeffrey seems in much better spirits since he spent so much time with me today, so hopefully that will continue.
I actually feel rested today. I got a good six hours of sleep last night and took about an hour nap with Jeffrey today. Plus, with all the good news, I don't feel so defeated and hopeless. Everything is going the way it should. My body is cooperating to give Jaxson the one thing I can give him that no one else can. Jeffrey is starting to come around and adjust (I think!). Jaxson is still improving on a daily basis, no matter what lies down the road. Jayson has been absolutely amazing in taking care of the house and bouncing between two jobs. I have amazing friends and family that take fantastic care of me, whether it's an ear to listen or having me over for a relaxing dinner or helping out with Jeffrey or offering me a free hair appointment, I always have someone who's checking in to see how I'm doing and asking if they can help. There is so much love and support in my life, I just know I couldn't do it without any of you!
Plus, as much as I'm dealing with regarding Jaxson, now Sara is about to have her baby (hopefully tonight!) and then she'll be stuck in ICU at Riverside until they can get her blood under control and make sure she doesn't lose any finger tips. So tomorrow's plan is to hang out with Jeffrey in the morning while Jayson goes to get a sweet rocking chair from my grandpa (speaking of awesome family, he's GIVING me his old chair that was like $600 because he bought a new one and didn't want to throw it out! He's great!), then go see Sara and the baby and head to the hospital at some point to feed Jaxson and see him for a bit. It's a flip-flop of the schedule I want, but that's okay as long as I see my boys.
As I wrap this up, I'm looking at Jeffrey who's asleep on the bed next to me. I can't believe how big this little boy is getting! He's built just like his daddy but he handles stress just like his mommy. That means he doesn't eat and he has meltdowns after bottling up his emotions for too long. I swear I did not teach him that! But he's such a great kid, I couldn't ask for a better son. He's my perfect angel and an awesome big brother already. I can't wait to watch my kids grow up together!
Anyway, let me start with Jaxson. I have been getting increasingly frustrating with Jaxson's inability to eat because his respirations have been so high. He started out at 5mL and each day dropped to taking less and less. Today when I tried to feed him he didn't take anything at all. So I asked the doctors about it this morning and they still say there's nothing wrong with his lungs, but they agree that he should be recovering more by now. It's possible that there's a small obstruction blocking the flow of air, and that obstruction could be caused by his cleft. We won't know until someone from the cleft team comes down and talks to us. And that means that there is still no timeframe for him coming home. He has to be off of the oxygen (which I think is doing nothing at this point) and he has to eat his bottles consistently before they'll let him leave. It's so frustrating to watch him labor to breathe when he reacts to the bottle and he definitely wants it, but his little body just can't handle the challenge. As his mom I just want to do it for him and make it all better, but there's nothing I can do about this one.
In other news, we got some of his test results back. Hs chromosome count came back normal(yay!) but the genetic test they did showed that he had a deletion on chromosome 15. At this point, they don't think it means anything. Jayson and I have to go get tested to see if either of us have the same issue or if our genes could make that issue to determine the likelihood that it's actually a problem. The geneticist actually said that even if our tests don't show anything that they still don't think it's anything. People walk around with extra and missing chromosomes all the time and don't know it. And this test has only been around for 5-7 years, so a lot of times they get this information and don't really know what to do with it. He also wants to follow up with Jaxson and keep tabs on him because it's not horribly abnormal for a baby to be born with one major birth defect, but to have more than one is apparently an anomaly. He got the Sanderson gene for stumping doctors apparently! And they requested permission to take his picture and use it for research and publications. I have a cute kid, so I signed the consent form. If it can help another kid in the future, all the better.
After I left today, Jaxson had a very busy afternoon. The neurosurgeon came down and looked at him, but didn't say much to the nurse. Plastic surgery came down and looked at him too and someone from their team will be back tomorrow at noon to chat with me. He got taken down to have the CT scan on his skull, so hopefully I'll have the results for that tomorrow as well. Then, since he didn't cooperate at noon, OT came back at 3 to feed him again and wouldn't you know he ate 10mL for her! Little brat haha. I'm so happy that he did well! I know it was because he was more relaxed and his breathing was unr control, which also shows that he CAN do it. Just gotta get that breathing down and he'll be taking a full bottle in no time :)
So after my weekend frustrations, I got some answers today and Jaxson made a bit more progress. I think they're still going to do an MRI on his brain and spine before he leaves, unless they included that in the CT today. It was a good day for Jaxson and I've got a plan for a routine for Jeffrey and I. Mornings at Children's and afternoons with Jeffrey. Jeffrey seems in much better spirits since he spent so much time with me today, so hopefully that will continue.
I actually feel rested today. I got a good six hours of sleep last night and took about an hour nap with Jeffrey today. Plus, with all the good news, I don't feel so defeated and hopeless. Everything is going the way it should. My body is cooperating to give Jaxson the one thing I can give him that no one else can. Jeffrey is starting to come around and adjust (I think!). Jaxson is still improving on a daily basis, no matter what lies down the road. Jayson has been absolutely amazing in taking care of the house and bouncing between two jobs. I have amazing friends and family that take fantastic care of me, whether it's an ear to listen or having me over for a relaxing dinner or helping out with Jeffrey or offering me a free hair appointment, I always have someone who's checking in to see how I'm doing and asking if they can help. There is so much love and support in my life, I just know I couldn't do it without any of you!
Plus, as much as I'm dealing with regarding Jaxson, now Sara is about to have her baby (hopefully tonight!) and then she'll be stuck in ICU at Riverside until they can get her blood under control and make sure she doesn't lose any finger tips. So tomorrow's plan is to hang out with Jeffrey in the morning while Jayson goes to get a sweet rocking chair from my grandpa (speaking of awesome family, he's GIVING me his old chair that was like $600 because he bought a new one and didn't want to throw it out! He's great!), then go see Sara and the baby and head to the hospital at some point to feed Jaxson and see him for a bit. It's a flip-flop of the schedule I want, but that's okay as long as I see my boys.
As I wrap this up, I'm looking at Jeffrey who's asleep on the bed next to me. I can't believe how big this little boy is getting! He's built just like his daddy but he handles stress just like his mommy. That means he doesn't eat and he has meltdowns after bottling up his emotions for too long. I swear I did not teach him that! But he's such a great kid, I couldn't ask for a better son. He's my perfect angel and an awesome big brother already. I can't wait to watch my kids grow up together!
Saturday, July 14, 2012
Baby Steps
So I didn't get to this yesterday, but yesterday was a great day! Jeffrey went to hang out with his grandma Julie while Jayson went to work and I went to seen Jaxson. I got to feed him again, and he took 4mL from the bottle. They also weaned him down to 0.4 liters of oxygen. The best part of the day: Jaxson's PICC line was removed! That was a line they put in his arm that stretched 18cm into his body. It carried his nutrition that he was taking before he was allowed to eat, so he was getting sugar, lipids and basic nutrition until they determined he could have real food. Since he's been tolerating his feeds and they've been increasing the amount he takes in, the PICC was no longer necessary.
Jaxson still has his feeding tube because he's not eating full meals from a bottle yet, and he has his oxygen, he also has monitors on his chest and one around his ankle. So he's still hooked up to a lot of things, but we're making baby steps in the right direction. The fact that he has no mor IVs is huge! I'm allowed to get him in and out of his crib on my own, without the assistance of a nurse, which is really nice. I can also change his diapers if he needs it without waiting for someone to help move all of his cords out of the way.
While Jaxson is doing well, I am still torn and struggling with a lot of things. I'll talk about Jax first, then we'll get to Jeffrey. Jax looks great and he's making a ton of progress. They even weaned his oxygen down to 0.1 liters today. His respirations were a bit higher, averaging 70-100, but he seemed okay otherwise. But there are still concerns. He still has a heart defect. He still has a tethered spine, which may also mean he has a mild form of spina bifida (we won't know until we get the genetic testing back). He still has to have an MRI on his skull to see if his bones are fused together. And the least of my concerns is his cleft palate. He is a pretty sick little baby, no matter the progress that he's making. I know he's going to be okay, he has to be okay, but it's so hard to stay positive when he's doing well because I know that we're not out of the woods yet. I don't even know when he gets to come home. What if he's still there when it's time for me to go back to work? How am I going to handle that? I'm already completely exhausted, I can't imagine throwing another task on my plate.
And then there's Jeffrey. Jeffrey is quite possibly the most amazing three year old a mo could ask for. He loves to go see his baby brother and he's very protective of him already. He listens to me (mostly) when I tell him to do something, and he doesn't seem to mind going to either of his grandparents houses every day. His stutter is up and down, which is actually a good thing. It's still there, but as long as it goes in cycles then it should go away. He adjusts really well to anything we throw at him, but I still worry about him constantly. He definitely misses mommy. He's now refusing to go to bed n his bed and insists on falling asleep with me in my bed. So far we've let him do it, but at some point it will have to stop. And I've got to figure out a way for he and I to do something together as soon as I can walk for longer than 15 minutes. I need my little boy to understand that mommy loves him and misses him too.
Jeffrey seems to be handling all of this better than I am. I'm draining myself by pumping for Jaxson every 3 hours (I sleep for 5 or 6 usually), traveling back and forth to the hospital, and trying to play with Jeffrey instead of just laying in bed with him. And I'd love to spend some time with my husband too, but that's something we just aren't going to get right now. I'm so glad we have a strong relationship! I feel like I'm being pulled in 5000 directions and I'm trying to meet everyone's needs and failing miserably. Well, maybe not failing Jaxson since he gets most of my time and energy, but everyone else. And it would be really nice if I could do something for myself. Like go to the chiropractor and get a massage.
Now I feel like I'm whining. I have so much to be thankful for with Jaxson, Jeffrey and Jayson. My boys are amazing and they're definitely what keeps me going every day. I just want my baby to come home. There's an empty cradle at the foot of my bed just waiting for him. There's also a perfect little space in between me and Jayson on the bed that he'll fit in on rough nights. I hate that he doesn't get held all the time, or get to be around his family to know that he is loved. My heart just aches thinking about the bond that I'm not forging with him right now. It doesn't even feel like I have 2 kids sometimes. Not that I don't love him or that I love him less than I love Jeffrey, but it's not the same.
I guess everything will come together in time. I just need to trust God's plan, whether I can see it and understand it or not, and believe that everything will be okay. I know it's normal to have these ups and downs, but I feel so guilty when I have a down day. There is so much good in my life to outweigh the bad that I shouldn't complain. I love my boys and I'd do anything for them. If that means that I don't sleep, my back hurts and I give up any time I'd get to myself, the so be it. There, I said it so you don't have to: Suck it up, Sanderson, it's not so bad.
Jaxson still has his feeding tube because he's not eating full meals from a bottle yet, and he has his oxygen, he also has monitors on his chest and one around his ankle. So he's still hooked up to a lot of things, but we're making baby steps in the right direction. The fact that he has no mor IVs is huge! I'm allowed to get him in and out of his crib on my own, without the assistance of a nurse, which is really nice. I can also change his diapers if he needs it without waiting for someone to help move all of his cords out of the way.
While Jaxson is doing well, I am still torn and struggling with a lot of things. I'll talk about Jax first, then we'll get to Jeffrey. Jax looks great and he's making a ton of progress. They even weaned his oxygen down to 0.1 liters today. His respirations were a bit higher, averaging 70-100, but he seemed okay otherwise. But there are still concerns. He still has a heart defect. He still has a tethered spine, which may also mean he has a mild form of spina bifida (we won't know until we get the genetic testing back). He still has to have an MRI on his skull to see if his bones are fused together. And the least of my concerns is his cleft palate. He is a pretty sick little baby, no matter the progress that he's making. I know he's going to be okay, he has to be okay, but it's so hard to stay positive when he's doing well because I know that we're not out of the woods yet. I don't even know when he gets to come home. What if he's still there when it's time for me to go back to work? How am I going to handle that? I'm already completely exhausted, I can't imagine throwing another task on my plate.
And then there's Jeffrey. Jeffrey is quite possibly the most amazing three year old a mo could ask for. He loves to go see his baby brother and he's very protective of him already. He listens to me (mostly) when I tell him to do something, and he doesn't seem to mind going to either of his grandparents houses every day. His stutter is up and down, which is actually a good thing. It's still there, but as long as it goes in cycles then it should go away. He adjusts really well to anything we throw at him, but I still worry about him constantly. He definitely misses mommy. He's now refusing to go to bed n his bed and insists on falling asleep with me in my bed. So far we've let him do it, but at some point it will have to stop. And I've got to figure out a way for he and I to do something together as soon as I can walk for longer than 15 minutes. I need my little boy to understand that mommy loves him and misses him too.
Jeffrey seems to be handling all of this better than I am. I'm draining myself by pumping for Jaxson every 3 hours (I sleep for 5 or 6 usually), traveling back and forth to the hospital, and trying to play with Jeffrey instead of just laying in bed with him. And I'd love to spend some time with my husband too, but that's something we just aren't going to get right now. I'm so glad we have a strong relationship! I feel like I'm being pulled in 5000 directions and I'm trying to meet everyone's needs and failing miserably. Well, maybe not failing Jaxson since he gets most of my time and energy, but everyone else. And it would be really nice if I could do something for myself. Like go to the chiropractor and get a massage.
Now I feel like I'm whining. I have so much to be thankful for with Jaxson, Jeffrey and Jayson. My boys are amazing and they're definitely what keeps me going every day. I just want my baby to come home. There's an empty cradle at the foot of my bed just waiting for him. There's also a perfect little space in between me and Jayson on the bed that he'll fit in on rough nights. I hate that he doesn't get held all the time, or get to be around his family to know that he is loved. My heart just aches thinking about the bond that I'm not forging with him right now. It doesn't even feel like I have 2 kids sometimes. Not that I don't love him or that I love him less than I love Jeffrey, but it's not the same.
I guess everything will come together in time. I just need to trust God's plan, whether I can see it and understand it or not, and believe that everything will be okay. I know it's normal to have these ups and downs, but I feel so guilty when I have a down day. There is so much good in my life to outweigh the bad that I shouldn't complain. I love my boys and I'd do anything for them. If that means that I don't sleep, my back hurts and I give up any time I'd get to myself, the so be it. There, I said it so you don't have to: Suck it up, Sanderson, it's not so bad.
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