Things with Jaxson have steadily been moving in the right direction. My last post talked about how he was cleared by cardiology for all of his surgeries, and he doesn't have to go back for a year. That news had me elated, and still does really. The biggest concern we had for Jaxson has become a nonissue, and everything else is either fixable or treatable.
Following the cardiology appointment on the 14th, I took him to hematology the following Monday. It was not a good experience. I may actually seek a second opinion. The doctor told me he didn't recommend testing Jax for my disorder. Then looked at me until I asked him why. Jerk. I mean, really? You already know I'm expecting the opposite, so why make me jump through hoops to get the answer? He said that blood doctors are actually shying away from testing kids for the disorder for a variety of reasons, but the one he cited was Jaxson's ability to get life insurance. Excuse me for a second, but are you fucking kidding me? I laughed in his face and asked if he had looked at Jaxson's other issues, and he said that maybe it didn't matter for him. I thought, really? You clearly haven't look at at his records. How are you going to meet with a new patient without looking at his records? I was beyond irritated. So he's going to have these surgeries and no one is going to know if he'll clot too much afterwards. Yeah, I think I'll get a second opinion. He gets a clot in his brain from his skull surgery and I'll sue the crap out of that guy!
Anyway, after that we actually got some more good news! Thursday was a day from hell for me. I got Jaxson to Children's at 8:30 for a kidney ultrasound. Then we went down to nuclear medicine to have a contrast dye scan on his kidneys to see how they are functioning. Then it was up to the urologist for the resutlts. 3.5 hours later, Jax still has some swelling on his right kidney, but it's better than it was a month ago. And his kidneys are functioning fine. So we got to stop the amoxicillin, which is good! He goes back in December for another ultrasound to check on it again, but overall the visit was positive.
Now I'm going to take you back two posts to Jaxson's audiology test. I got the report in the mail last week and it just brought up memories of the visit and how I just didn't have a good feeling about how it went and the way we were treated. So I got in contact with an acquaintance (friend of a friend), who is an audiologist. She read the report and basically reaffirmed my feelings. She recommended that I go to Cincinnati Children's as they have a really good audiology department and apparently this is not something that Columbus Children's is really known for or good at. So we have an ENT appointment on October 15th and I think I'm going to try and schedule a visit to Cincy the week before to have that test repeated.
Jaxson's next appointment is on Wednesday when Franklin County comes out to do their developmental assessment as a referral from Help Me Grow. They'll provide home-based physical therapy, occupational therapy and possibly other therapies as needed. After that (as of right now) he doesn't have any other appointments for two weeks. I'm about 99.9% sure that's going to change, though, as his 3D image on his skull and spinal MRI have not been scheduled. And we'll have to meet with genetics after that. But this week will be relatively easy with just the one appointment and they're coming to the house.
Jaxson seems to be doing very well overall. He weighed 9lbs 11oz when his g tube got changed yesterday. He's been smiling more and awake more, and he's been taking more food from his bottle. We've been able to check off cardiology, hematology and surgery clinic from the list. Urology is no longer a worry, just something to keep tabs on. He seems happy most days, and that's really all that matters!
Jeffrey is still pretty sensitive and wants a lot of attention, but he's getting less whiny and starting to not be so clingy. I'm sure that's partially due to him adjusting to having a brother and partially due to us trying to make sure we give him our undivided attention as often as we can. He still loves going to the clubhouse at the hospital when Jaxson has an appointment, and sometimes he even asks to go there. He cracks me up on a regular basis and shows me every day how smart he is and what an angel we have in our house. I truly could not ask for a better kid to be Jaxson's big brother.
As for Jayson and I, well, we're tired. I get up and go to work 40 hours a week and try to give him as much of a break as I can when he gets home. We alternate nights taking care of Jaxson depending on my schedule. I just hope that Jax starts sleeping through the night soon because I'm not sure how much longer I can function on 3 hours of sleep or less! But really, if that's the only complaint, I think we're doing okay. Oh, there's always money problems and way too many a bills to pay, but I just choose not to think about it. Good or bad, doesn't matter to me right now. It's overwhelming to even consider what we owe, so I'm just crossing my fingers that Jax gets approved for Medicaid and it becomes mostly a nonissue.
Jaxson's ride is still in the beginning stages. I'm trying not to think about how fast his first surgery is sneaking up on me. Most everything has been so positive that I'd rather focus on that. And keeping my family happy and healthy, which is what will keep things normal for the kids. So for now I'll be thankful that there's only one appointment next week and maybe we can get some semblance of normalcy for awhile. That will help everyone relax and distress. Which is exactly what we need.
Saturday, September 22, 2012
Sunday, September 16, 2012
Good News!
This one is going to be brief, it's been very busy in the Burks household lately. Jaxson had a follow o cardiology appointment on Friday shortly after a follow up neonatology visit. Both visits went really well! Neonatology will follow Jaxson until it's determined that they don't need to anymore. So at least for the first year, possibly two. But he's gaining weight (9 pounds 7.7 ounces!) and growing (21 inches) well. His body is proportionate, which is what they really look for.
Now on to the cardiology visit, which is where the news gets really good: Jaxson does not have to go back to them for a year! They did an EKG and everything sounded and looked good. His pulses are good and even throughout his body. His aorta being small is clearly not impacting anything right now, and the only reason they want to follow up is because his aorta only has too flaps instead of three. As long as things stay as they are, that issue won't likely present itself until Jaxson is iddle aged.
Really great news all around. He's been cleared for surgery, so the next step is to see if he has my clotting disorder. We have a hematology appointment tomorrow to talk about that, and it won't prevent any surgeries, just give the doctors something to be aware of. So we'll be scheduling the 3D image on his skull and spinal MRI this week. His first surgery will take place next month, which is rapidly sneaking up on us. But for now, there's one less worry and one less appointment we have to go to. Check that off the list and move on to the next thing!
Now on to the cardiology visit, which is where the news gets really good: Jaxson does not have to go back to them for a year! They did an EKG and everything sounded and looked good. His pulses are good and even throughout his body. His aorta being small is clearly not impacting anything right now, and the only reason they want to follow up is because his aorta only has too flaps instead of three. As long as things stay as they are, that issue won't likely present itself until Jaxson is iddle aged.
Really great news all around. He's been cleared for surgery, so the next step is to see if he has my clotting disorder. We have a hematology appointment tomorrow to talk about that, and it won't prevent any surgeries, just give the doctors something to be aware of. So we'll be scheduling the 3D image on his skull and spinal MRI this week. His first surgery will take place next month, which is rapidly sneaking up on us. But for now, there's one less worry and one less appointment we have to go to. Check that off the list and move on to the next thing!
Sunday, September 9, 2012
Busy, busy! More Appointments, Updated Timeline
If you can't guess by the lack of posts, things at the Burks household have been quite busy lately. Jaxson has had five appointments since my last post and has three more this week. We met with plastic surgery first, it was just a follow up to the conversation we had in the NICU. Nothing new, but his skull surgery can't be scheduled until he's cleared by cardiology and hematology. In the meantime, I'm waiting to hear about scheduling his spinal MRI and 3D image of his skull in preparation for the surgery.
The next appointment was physical therapy. Jaxson has some muscles that are pretty tight, which is somewhat normal for a baby who's been in the hospital. His third appointment was in conjunction with PT, it was his Help Me Grow assessment. HMG is through the state and they provide home-based PT, occupations therapy, speech therapy, etc. So Jayson learned some stretches to do with Jaxson at PT and he'll go there every other week through our private insurance, and once HMG gets his immunization record, they'll come out to the house about once a month to do additional therapies as needed.
Jaxson's third and fourth appointments were on the same day. The first was the follow up to his G Tube surgery and circumcision. Everything looks great on both counts, healing well. We go back in two weeks to have the G Tube replaced and have the doctor show us how much water to add should the Mickey button come out. The second of those two was his audiology appointment. They wanted to retest his left ear because he showed some signs of hearing loss during his initial test at the hospital. The appointment took 2.5 hours and I was at my wits end by the time it was over. The right ear results were conclusive. While it showed he had some mild hearing loss on the outside, his ear nerve actually registered normal. Which means there's either something structural blocking the sound or there's fluid behind his ear. She did not get to test how well his ear drums were moving because he wouldn't tolerate it, but his right ear should be fine. His left ear tests were inconclusive because he was done with the testing, but it's quite likely that he'll have mild hearing loss in his left ear. From what's understand, it's not common for babies to be born with hearing loss in one ear (go figure), but it's mild and likely fixable with a hearing aid, we'll know more in five weeks. We have to meet with the ENT and repeat the test he just had to get some better results.
This week, Jaxson has a well baby check and immunizations on Tuesday. Then on Friday he'll follow up with neonatology and cardiology. Next Monday he has a hematology appointment, so we should know by the end of next week when his skull surgery will take place. It should happen in the next month.
I wanted to do another timeline on here, as I'm sure I frequently will when things pop up, to catch up people who haven't been following or who can't keep up (not like I really can either!) as things continue to make their way to our calendar. So here it is:
Cardiology and hematology follow up (test for prothrombin gene mutation)
Set ophthalmology appt to check vision and possibility of strabismus
3-4 months - skull surgery
Audiology follow up, if there's a problem, further testing and probably tubes
6-8 months - spinal surgery
10-12 month - cleft surgery
Urology follow up on September 20 to check on blockage, if it's not resolved, surgery
Holes where testicles dropped did not heal at birth like they should have, will require surgery at some point
*before any surgeries take place, he must be cleared by cardiology and hematology
The next 12-18 months are going to be long and full of doctor and hospital visits. But it seems like everything is slowing down (believe it or not) and becoming manageable. Jeffrey's stutter now only appears when he's excited or upset, which is a huge step in the right direction. Jayson and I are becoming more comfortable in our roles in the family and making things work the best they can for us. Jaxson is growing like a weed, he's already 9lbs 2oz! And he sometimes (not often, unfortunately) will sleep for 6 hours at night. But even so, Jayson and I are taking turns and working in shifts on some nights to get through it. I think we have a good schedule worked out and I think that Jax will start sleeping through the night very soon.
For now, we'll just keep doing what we're doing since it seems to be working. And for those times when Jax will only calm down for mommy, there's caffeine to get me through the day. And someday I'll get to share a bed with my husband again. Without a child in between us!
The next appointment was physical therapy. Jaxson has some muscles that are pretty tight, which is somewhat normal for a baby who's been in the hospital. His third appointment was in conjunction with PT, it was his Help Me Grow assessment. HMG is through the state and they provide home-based PT, occupations therapy, speech therapy, etc. So Jayson learned some stretches to do with Jaxson at PT and he'll go there every other week through our private insurance, and once HMG gets his immunization record, they'll come out to the house about once a month to do additional therapies as needed.
Jaxson's third and fourth appointments were on the same day. The first was the follow up to his G Tube surgery and circumcision. Everything looks great on both counts, healing well. We go back in two weeks to have the G Tube replaced and have the doctor show us how much water to add should the Mickey button come out. The second of those two was his audiology appointment. They wanted to retest his left ear because he showed some signs of hearing loss during his initial test at the hospital. The appointment took 2.5 hours and I was at my wits end by the time it was over. The right ear results were conclusive. While it showed he had some mild hearing loss on the outside, his ear nerve actually registered normal. Which means there's either something structural blocking the sound or there's fluid behind his ear. She did not get to test how well his ear drums were moving because he wouldn't tolerate it, but his right ear should be fine. His left ear tests were inconclusive because he was done with the testing, but it's quite likely that he'll have mild hearing loss in his left ear. From what's understand, it's not common for babies to be born with hearing loss in one ear (go figure), but it's mild and likely fixable with a hearing aid, we'll know more in five weeks. We have to meet with the ENT and repeat the test he just had to get some better results.
This week, Jaxson has a well baby check and immunizations on Tuesday. Then on Friday he'll follow up with neonatology and cardiology. Next Monday he has a hematology appointment, so we should know by the end of next week when his skull surgery will take place. It should happen in the next month.
I wanted to do another timeline on here, as I'm sure I frequently will when things pop up, to catch up people who haven't been following or who can't keep up (not like I really can either!) as things continue to make their way to our calendar. So here it is:
Cardiology and hematology follow up (test for prothrombin gene mutation)
Set ophthalmology appt to check vision and possibility of strabismus
3-4 months - skull surgery
Audiology follow up, if there's a problem, further testing and probably tubes
6-8 months - spinal surgery
10-12 month - cleft surgery
Urology follow up on September 20 to check on blockage, if it's not resolved, surgery
Holes where testicles dropped did not heal at birth like they should have, will require surgery at some point
*before any surgeries take place, he must be cleared by cardiology and hematology
The next 12-18 months are going to be long and full of doctor and hospital visits. But it seems like everything is slowing down (believe it or not) and becoming manageable. Jeffrey's stutter now only appears when he's excited or upset, which is a huge step in the right direction. Jayson and I are becoming more comfortable in our roles in the family and making things work the best they can for us. Jaxson is growing like a weed, he's already 9lbs 2oz! And he sometimes (not often, unfortunately) will sleep for 6 hours at night. But even so, Jayson and I are taking turns and working in shifts on some nights to get through it. I think we have a good schedule worked out and I think that Jax will start sleeping through the night very soon.
For now, we'll just keep doing what we're doing since it seems to be working. And for those times when Jax will only calm down for mommy, there's caffeine to get me through the day. And someday I'll get to share a bed with my husband again. Without a child in between us!
Sunday, August 26, 2012
Adjusting to Home Life
Jaxson has been home for a week. And I swear he knows every time I sit down to blog. As soon as I put the iPad on my lap, the kid throws a fit. I've been trying to write this post for five days! So before he pitches a fit again, I'm going to give a short version. I think.
Jayson and Jeffrey seem to be adjusting well to their new routines and roles in the house. Jeffrey is a little more sensitive and needy, but Jayson and I have been trying to give him some special attention here and there and it seems to help. His stutter gets pretty bad when he feels like he's being left out, such as when it takes both Jayson and I to feed Jaxson. But most of the time he acts like a normal three year old and entertains himself. We are lucky to have such an amazing and mostly understanding little boy. He may act like a normal three year old most days, but other days you can tell he was given to us for a reason. Not many kids could handle what he's had to and will have to endure. But I do t worry about Jeffrey. He's always adjusted well and I don't anticipate this being any different. And I know he'll grow up protecting his little brother and doting over him all through this process. We are truly blessed to have him as our son.
Jayson is handling staying at home like a champ. Jaxson's bottles and feeding equipment are always clean, the kitchen is always clean, the laundry gets done and there's usually dinner when I get home from work. I'm so lucky to have a partner who is comfortable enough in his own skin to take part in such a role reversal. It's been a tough week on both of us because of that, but everyone is figuring out their respective routines. Jayson is an amazing father and husband. Sure, he gets frustrated, as we all do, but he's also shown mad patience in times when I would pull my hair out. I admire his ability to keep his cool 97% of the time.
Jaxson seems to be adjusting okay. Today we decided to change a few things around. We upped his feeds yesterday and the poor thing didn't sleep a wink last night. Which meant that mom didn't sleep either. And I now it's because his belly hurt. So today we decided to let him dictate when he eats instead of continuing on this rigid schedule. I know he's been on this schedule for 7 weeks, but with the continuous drip in his tube at night it's just not working. We're going to cut out the drip and feed him like a regular baby. Even if we don't give him a bottle at night and put his food right in his tube, at least he'll get fed and calmed down much faster than he has been. I believe that he's not sleeping cease even though he's got the pump, he's still hungry. Has body doesn't understand the switch from his daytime schedule to his nighttime schedule. So we are going to try this and see if he does better. And hopefully in the process Jayson and I will get more sleep.
And then there's me. I got to spend a whopping 48 hours with my family together last weekend before returning to work on Monday. I worked a full week and took m turns with Jaxson when I had a later shift at work the next day. I'm exhausted. My back hurts. But my baby is home. It's worth it. Adjusting to being the sole breadwinner is a little rough. I want to be home with my family. But someone has to work, and for us that person is me. Thankfully Jayson can still tattoo to supplement my income, but I still have to have a regular job. Some days it's nice to go to work and get a break from the kids, but most days I just miss everyone all day. I know I will get used to it as time goes on, but for now it's a little rough.
The last two days have been really nice though. I've gotten to spend some quality time with my family and really see what Jayson does all day. I try to help him when I'm home and he yells at me to sit down. Like I don't sit down all day at work! But I appreciate that he recognizes that I'm tired when I get home, and this weekend has been nice just relaxing.
Now that we've got our routines, I think that everyone is going to begin adjusting even more. Jaxson's appointments (he's already had 2) will throw certain days off, but I've been lucky enough to be able to schedule most of my days around them to help out with Jeffrey. Well that and I want to be there too. Last week Jaxson gained 4 ounces in 2 days! I can't wait to see what he weighs when the nurse comes out on Wednesday. Thursday marks his first of 9 days of appointments over the next 3 weeks. Notice I said 9 days, not 9 appointments. Some of those days have multiple appointments. Thursday we meet with Dr. Pearson of plastic surgery to discuss the skull surgery and probably set up the appointment for the 3D image of his skull as well as his brain and spine MRIs. More appointments to add the list.
And so Jaxson's journey through life truly begins. He's home. And he's got a long road ahead of him. It's time to settle in and take all of this in and see what it really means and how it's not only going to affect Jaxson, but the rest of us. Jaxson is a fighter and he's already proven that his will to get through these first rough patches will supersede anything that's thrown at him. He's going to be mentally and emotionally tougher than any other kid his age. He may not get to be physically stronger or allowed to play sports like his brother, but he'll make up for it in other ways. And who knows, he might surprise us and be a fantastic sportsman. His little body has already endured so much that I don't doubt his ability to prove everyone wrong when he wants to.
This journey is truly going to be the ride of a lifetime. As draining as it has been and will be in the future, I wouldn't have it any other way.
Jayson and Jeffrey seem to be adjusting well to their new routines and roles in the house. Jeffrey is a little more sensitive and needy, but Jayson and I have been trying to give him some special attention here and there and it seems to help. His stutter gets pretty bad when he feels like he's being left out, such as when it takes both Jayson and I to feed Jaxson. But most of the time he acts like a normal three year old and entertains himself. We are lucky to have such an amazing and mostly understanding little boy. He may act like a normal three year old most days, but other days you can tell he was given to us for a reason. Not many kids could handle what he's had to and will have to endure. But I do t worry about Jeffrey. He's always adjusted well and I don't anticipate this being any different. And I know he'll grow up protecting his little brother and doting over him all through this process. We are truly blessed to have him as our son.
Jayson is handling staying at home like a champ. Jaxson's bottles and feeding equipment are always clean, the kitchen is always clean, the laundry gets done and there's usually dinner when I get home from work. I'm so lucky to have a partner who is comfortable enough in his own skin to take part in such a role reversal. It's been a tough week on both of us because of that, but everyone is figuring out their respective routines. Jayson is an amazing father and husband. Sure, he gets frustrated, as we all do, but he's also shown mad patience in times when I would pull my hair out. I admire his ability to keep his cool 97% of the time.
Jaxson seems to be adjusting okay. Today we decided to change a few things around. We upped his feeds yesterday and the poor thing didn't sleep a wink last night. Which meant that mom didn't sleep either. And I now it's because his belly hurt. So today we decided to let him dictate when he eats instead of continuing on this rigid schedule. I know he's been on this schedule for 7 weeks, but with the continuous drip in his tube at night it's just not working. We're going to cut out the drip and feed him like a regular baby. Even if we don't give him a bottle at night and put his food right in his tube, at least he'll get fed and calmed down much faster than he has been. I believe that he's not sleeping cease even though he's got the pump, he's still hungry. Has body doesn't understand the switch from his daytime schedule to his nighttime schedule. So we are going to try this and see if he does better. And hopefully in the process Jayson and I will get more sleep.
And then there's me. I got to spend a whopping 48 hours with my family together last weekend before returning to work on Monday. I worked a full week and took m turns with Jaxson when I had a later shift at work the next day. I'm exhausted. My back hurts. But my baby is home. It's worth it. Adjusting to being the sole breadwinner is a little rough. I want to be home with my family. But someone has to work, and for us that person is me. Thankfully Jayson can still tattoo to supplement my income, but I still have to have a regular job. Some days it's nice to go to work and get a break from the kids, but most days I just miss everyone all day. I know I will get used to it as time goes on, but for now it's a little rough.
The last two days have been really nice though. I've gotten to spend some quality time with my family and really see what Jayson does all day. I try to help him when I'm home and he yells at me to sit down. Like I don't sit down all day at work! But I appreciate that he recognizes that I'm tired when I get home, and this weekend has been nice just relaxing.
Now that we've got our routines, I think that everyone is going to begin adjusting even more. Jaxson's appointments (he's already had 2) will throw certain days off, but I've been lucky enough to be able to schedule most of my days around them to help out with Jeffrey. Well that and I want to be there too. Last week Jaxson gained 4 ounces in 2 days! I can't wait to see what he weighs when the nurse comes out on Wednesday. Thursday marks his first of 9 days of appointments over the next 3 weeks. Notice I said 9 days, not 9 appointments. Some of those days have multiple appointments. Thursday we meet with Dr. Pearson of plastic surgery to discuss the skull surgery and probably set up the appointment for the 3D image of his skull as well as his brain and spine MRIs. More appointments to add the list.
And so Jaxson's journey through life truly begins. He's home. And he's got a long road ahead of him. It's time to settle in and take all of this in and see what it really means and how it's not only going to affect Jaxson, but the rest of us. Jaxson is a fighter and he's already proven that his will to get through these first rough patches will supersede anything that's thrown at him. He's going to be mentally and emotionally tougher than any other kid his age. He may not get to be physically stronger or allowed to play sports like his brother, but he'll make up for it in other ways. And who knows, he might surprise us and be a fantastic sportsman. His little body has already endured so much that I don't doubt his ability to prove everyone wrong when he wants to.
This journey is truly going to be the ride of a lifetime. As draining as it has been and will be in the future, I wouldn't have it any other way.
Saturday, August 18, 2012
Jaxson Comes Home
There hasn't been a whole lot to update you on over the last few days. It's mostly been Jaxson getting back on a regular eating schedule and me adjusting to going back to work. Nothing major to report, which is nice!
Today, though, is a different story. I write to you from the hospital today as Jaxson does his 90 minute carseat test. Jayson took Jeffrey to the park for a few after picking up Jaxson's prescriptions at the pharmacy. The nurses got all of our stuff together in bags between last night and this morning, and the nurse today is working on scanning out every bottle of milk I have here. There are seven bins! It looks like we're going to have to use it up before we need to buy formula. We don't have enough space in our freezer for all of it! Guess I produced more than I thought.
After Jaxson's carseat test, we've got to feed him and then we get to go home! I'm feeling slightly overwhelmed. We have a place for him to sleep and a few outfits, but not much else. We just didn't know how to plan for this little guy and now I feel like we're scrambling to get what we need. The carseat he's in isn't even ours. It's Ariella's and we have to give it back.
And then there's the matter of integrating this little guy into our daily home routines. I don't really see it being a problem, it's just an adjustment because he's home and not at the hospital. We've spent the last six and a half weeks driving back and forth and now everyone is finally going to be under one roof. I'm really excited about it, just nervous! Jaxson will have is own adjustment period as he sees what the real world is like. I mean, this kid has never been outside except to be transferred from Riverside to Children's! So he's going to have his own adjustment period too.
This is definitely a good thing. Babies are supposed to be home with their families. And I know that once we get there everything is going to work out fine. It's the anticipation of getting him there that's making me a wreck. Crossies all goes well so I can be comfortable going back to work on Monday!
Today, though, is a different story. I write to you from the hospital today as Jaxson does his 90 minute carseat test. Jayson took Jeffrey to the park for a few after picking up Jaxson's prescriptions at the pharmacy. The nurses got all of our stuff together in bags between last night and this morning, and the nurse today is working on scanning out every bottle of milk I have here. There are seven bins! It looks like we're going to have to use it up before we need to buy formula. We don't have enough space in our freezer for all of it! Guess I produced more than I thought.
After Jaxson's carseat test, we've got to feed him and then we get to go home! I'm feeling slightly overwhelmed. We have a place for him to sleep and a few outfits, but not much else. We just didn't know how to plan for this little guy and now I feel like we're scrambling to get what we need. The carseat he's in isn't even ours. It's Ariella's and we have to give it back.
And then there's the matter of integrating this little guy into our daily home routines. I don't really see it being a problem, it's just an adjustment because he's home and not at the hospital. We've spent the last six and a half weeks driving back and forth and now everyone is finally going to be under one roof. I'm really excited about it, just nervous! Jaxson will have is own adjustment period as he sees what the real world is like. I mean, this kid has never been outside except to be transferred from Riverside to Children's! So he's going to have his own adjustment period too.
This is definitely a good thing. Babies are supposed to be home with their families. And I know that once we get there everything is going to work out fine. It's the anticipation of getting him there that's making me a wreck. Crossies all goes well so I can be comfortable going back to work on Monday!
Tuesday, August 14, 2012
G-Tube Placement
I can't believe it's been four days since my last post. I wanted to get something up last night, but I just didn't have it. I fell asleep in the five minutes it took for Jayson to put Jeffrey to bed last night. I can't remember if I posted this yet, but Sara came home on Saturday. We are all excited to have her back where she belongs, especially her daughters. She's not completely out of the woods yet, but she's at least stable enough to be home while they try to figure out what's ultimately causing her problems. It's been nice to have her home and have her be available when I actually get a minute to call her!
So, if you didn't catch it on Facebook yesterday, Jaxson had his feeding tube put in yesterday. I got to the hospital around 7:30am to see him and hang out before everything got started. He was a add-on, so we had no idea when he would be taken back. I was really hoping that everything would get going before I had to go to work, and thankfully it did. Also thankfully, Jayson had Jeffrey up and ready pretty early. Sam was more than willing to watch Jeffrey during all of this and take him to my dads as well, so when I called Jayson to let him know, he was already dropping Jeffrey off. From there, Amanda was nice enough to pick Jeffrey up as there was a small glitch in our plans, and she was nice enough to grab him on short notice. Then Jayson picked him up from her later. I love my friends and family!
So, we got the call shortly before 9am. They got Jaxson switched to a different bed that would help regulate his temperature during and after surgery and then we were off to the OR waiting room. I talked with anesthesia before Jayson got there, but he arrived in time to talk to the doctor before surgery. We were able to smother Jaxson with kisses and walk with him down to the OR before we went to the family waiting room. On the walk down, I had to fight the urge to burst into tears. I got us checked in and got Jaxsons's tracking number to follow his progress on the monitor. Each kid is assigned a number and a list is shown on the screen so you a see what part of the process your child is in. You can see when everything is done and be ready for them to come get you before your name is actually called. I didn't get to see much of that because I was in that room for all of five minutes. I had to pump and then go to work.
Leaving the hospital while Jaxson was in surgery was possibly the hardest thing I have ever done. But it was probably the best decision I could have made. Jayson was there to talk to the doctors afterward and there was nothing I could do during the procedure. It was good for me to return to work and be distracted during that time. Jayson said that Jaxson was so out of it after the surgery that I didn't miss anything anyway. Of course, I would have held him, but I have other responsibilities too and I needed to make sure I took care of everything.
Jaxson came through the surgery really well. He has lots of new hardware attached to him that is really scary to look at right now, but I know it's for the best. We were able to get him circumcised at the same time, which was nice for a couple of reasons. One, the nurses can take care of it for most of the healing process. Two, he was already sedated so we didn't have to put him through it twice.
There was one negative that came out of the surgery. The doctor who did the surgery apparently makes it a practice to look at the pelvic area when she does feeding tubes. It's laparoscopic, so nothing too crazy. She discovered that the area where Jaxson's testicles dropped from did not close and heal up as they should have. It's really common in premature babies, and it hasn't caused him any issues yet, but it will make him more prone to hernias. And it WILL have to be fixed at some point. We'll find out more about what that really means in a month when we go in for the follow-up appointment and his first G-Tube change.
It's really hard to go see Jaxson while he heals up from this. He is on a continuous drip through his tube. First it was just Pedialyte to make sure everything was okay and that he could tolerate it. He was switched back to food today and they will monitor how he handles that before moving him back to regular feeds. But while he's on the continuous drip he can't be picked up. So all I could do was lean over and give him kisses. And when I did that he would fuss. He's still on morphine and Tylenol every four hours too, so he's pretty out of it.
I am so ready for him to come home that I can't stand it. But I want to cry seeing that tube in his belly and now I question whether it was the right decision. I know deep down that it was, but it's so hard to see now. I hate it for him. I hate that he's in pain. I hate that he can't be comforted by me because I can't pick him up. I hate that I probably won't get to see him tomorrow.
It's like I get more depressed each day, but I shouldn't because I know he's coming home next week. Jayson and I are going to training classes on Friday to learn how to take are of Jaxson's tube and how to replace it if it comes out. Maybe I'm just depressed that we even have to do this. The more I think about how unfair this is, the more I have to remind myself that we can do it. We were blessed with an amazing little boy in Jeffrey. He's not only going to be a great big brother, but I already know he's got the personality and character to handle growing up with a little less attention than Jaxson. Keeping it equal is a huge goal of mine, but there will just be times that Jaxson needs more. And I firmly believe that Jeffrey will grow up knowing that he's just as special as his brother, even if mo and dad can't always show him. Jayson and I have a strong enough foundation to handle Jaxon and his medical problems without it tearing us apart. There are so many people I hear about whose relationships aren't strong enough to withstand this situation. Ours isn't one of them. How many men do you know that are comfortable enough in their own skin to be a stay-at-home dad and let their wife go to work? It's a complete role reversal and not many men could handle it. I'm blessed to be married to a man that is not just able, but -willing- to stay home with the kids.
So I'm hoping that these times of depression get fewer and farther between. I'm hoping that fence Jaxson comes home that things will start to look up and that my feelings are caused by my dissing him more than anything. I guess we'll find out next week. For now, I'll just keep counting the blessings that I have in my three amazing boys. I hope that Jaxson continues to teach me something every day and I'm grateful that Jeffrey is perfect and Jayson supports me in everything I do.
I truly am blessed, even if sometimes it's hard to see beyond the struggles.
So, if you didn't catch it on Facebook yesterday, Jaxson had his feeding tube put in yesterday. I got to the hospital around 7:30am to see him and hang out before everything got started. He was a add-on, so we had no idea when he would be taken back. I was really hoping that everything would get going before I had to go to work, and thankfully it did. Also thankfully, Jayson had Jeffrey up and ready pretty early. Sam was more than willing to watch Jeffrey during all of this and take him to my dads as well, so when I called Jayson to let him know, he was already dropping Jeffrey off. From there, Amanda was nice enough to pick Jeffrey up as there was a small glitch in our plans, and she was nice enough to grab him on short notice. Then Jayson picked him up from her later. I love my friends and family!
So, we got the call shortly before 9am. They got Jaxson switched to a different bed that would help regulate his temperature during and after surgery and then we were off to the OR waiting room. I talked with anesthesia before Jayson got there, but he arrived in time to talk to the doctor before surgery. We were able to smother Jaxson with kisses and walk with him down to the OR before we went to the family waiting room. On the walk down, I had to fight the urge to burst into tears. I got us checked in and got Jaxsons's tracking number to follow his progress on the monitor. Each kid is assigned a number and a list is shown on the screen so you a see what part of the process your child is in. You can see when everything is done and be ready for them to come get you before your name is actually called. I didn't get to see much of that because I was in that room for all of five minutes. I had to pump and then go to work.
Leaving the hospital while Jaxson was in surgery was possibly the hardest thing I have ever done. But it was probably the best decision I could have made. Jayson was there to talk to the doctors afterward and there was nothing I could do during the procedure. It was good for me to return to work and be distracted during that time. Jayson said that Jaxson was so out of it after the surgery that I didn't miss anything anyway. Of course, I would have held him, but I have other responsibilities too and I needed to make sure I took care of everything.
Jaxson came through the surgery really well. He has lots of new hardware attached to him that is really scary to look at right now, but I know it's for the best. We were able to get him circumcised at the same time, which was nice for a couple of reasons. One, the nurses can take care of it for most of the healing process. Two, he was already sedated so we didn't have to put him through it twice.
There was one negative that came out of the surgery. The doctor who did the surgery apparently makes it a practice to look at the pelvic area when she does feeding tubes. It's laparoscopic, so nothing too crazy. She discovered that the area where Jaxson's testicles dropped from did not close and heal up as they should have. It's really common in premature babies, and it hasn't caused him any issues yet, but it will make him more prone to hernias. And it WILL have to be fixed at some point. We'll find out more about what that really means in a month when we go in for the follow-up appointment and his first G-Tube change.
It's really hard to go see Jaxson while he heals up from this. He is on a continuous drip through his tube. First it was just Pedialyte to make sure everything was okay and that he could tolerate it. He was switched back to food today and they will monitor how he handles that before moving him back to regular feeds. But while he's on the continuous drip he can't be picked up. So all I could do was lean over and give him kisses. And when I did that he would fuss. He's still on morphine and Tylenol every four hours too, so he's pretty out of it.
I am so ready for him to come home that I can't stand it. But I want to cry seeing that tube in his belly and now I question whether it was the right decision. I know deep down that it was, but it's so hard to see now. I hate it for him. I hate that he's in pain. I hate that he can't be comforted by me because I can't pick him up. I hate that I probably won't get to see him tomorrow.
It's like I get more depressed each day, but I shouldn't because I know he's coming home next week. Jayson and I are going to training classes on Friday to learn how to take are of Jaxson's tube and how to replace it if it comes out. Maybe I'm just depressed that we even have to do this. The more I think about how unfair this is, the more I have to remind myself that we can do it. We were blessed with an amazing little boy in Jeffrey. He's not only going to be a great big brother, but I already know he's got the personality and character to handle growing up with a little less attention than Jaxson. Keeping it equal is a huge goal of mine, but there will just be times that Jaxson needs more. And I firmly believe that Jeffrey will grow up knowing that he's just as special as his brother, even if mo and dad can't always show him. Jayson and I have a strong enough foundation to handle Jaxon and his medical problems without it tearing us apart. There are so many people I hear about whose relationships aren't strong enough to withstand this situation. Ours isn't one of them. How many men do you know that are comfortable enough in their own skin to be a stay-at-home dad and let their wife go to work? It's a complete role reversal and not many men could handle it. I'm blessed to be married to a man that is not just able, but -willing- to stay home with the kids.
So I'm hoping that these times of depression get fewer and farther between. I'm hoping that fence Jaxson comes home that things will start to look up and that my feelings are caused by my dissing him more than anything. I guess we'll find out next week. For now, I'll just keep counting the blessings that I have in my three amazing boys. I hope that Jaxson continues to teach me something every day and I'm grateful that Jeffrey is perfect and Jayson supports me in everything I do.
I truly am blessed, even if sometimes it's hard to see beyond the struggles.
Friday, August 10, 2012
G-Tube Decision
If you follow me on Facebook, then you already know that Jayson and I made the decision today to go ahead and have the doctors schedule Jaxson's G-tube surgery. He is improving on his feeds, and we will continue to work on it at home, but he's not improving fast enough for us to give him another week at the hospital to try it. We don't have a date for the surgery yet, but it will likely be Monday or Tuesday.
In preparation for the G-tube placement, Jaxson had to have a contras scan to make sure that his anatomy is correct. Meaning, they had to know that his stomach was in the right place! I wasn't really worried, if it was not in the right spot then his NG tube wouldn't be working. And I was right, everything looked good on the scan.
Of course, the day that I tell them we want to move forward with the tube so that he can come home, he starts eating better. He at 43mL at 8am, they made me stop at 10mL at 11 because of the scan, but he ate a full bottle (60mL) at 2! Then 35mL and 23mL tonight. It's like he knows what's coming. And you know what? If that motivates him then all the better! I can back out of that surgery at any time before they do it. So if he decides that he suddenly wants to take off and eat like he's supposed to, then we'll wait and let him do it. He's going to be at the hospital for another 10 days most likely anyway, so if it's not going to extend that time and he comes home without a tube, then I'll take it! I'm really not holding my breath though. We'll do the tube and if he gets it back out in a month then that's what happens. But I want him to progress at his pace, not be forced into it before he's ready.
On the subject of food, I've been attempting to wean myself off of pumping as I return to work next week. I've chatted with other moms and struggled with my own demons. Initially I felt that I wouldn't be able to take the time at work to do it. It was my decision to stop, no one was forcing me. But as I've started this process I'm beginning to question myself. I want to give Jaxson everything that I can. I won't be able to be home with him during the day, and I feel that if I can produce for him then I should. No one is pushing me in that direction either. Even the lactation consultants have been really understanding in working with me on what's best for my family. So all of this back and forth is in my head. I got some good tips on how to slow down my production, but part of me doesn't want to do that. If I can just back off slowly then maybe I'll feel better. I've already gotten myself to every 4-5 hours without a problem, so I'd only have to pump once during a shift. I tried 6 hours today and thought I was going to die by the time I pumped again.
So I'm trying to figure out what the best course of action is, even though I think I've already made up my mind. And maybe once Jaxson comes home I'll feel differently about what I can do for him, but for now I think I need to keep doing what I'm doing. It's exhausting, and it's going to be a pain to cart my pump around and make sure that I have access to a plug o a regular basis. But I think it will be far more wearing on me to NOT pump and provide for my baby. Not to mention the emotional toll that stopping pumping takes on a woman's body anyway.
If you're still reading this, thanks for letting me process my thoughts and feelings as I write. If you haven't noticed, that's how I function best.
Jaxson is finally on pace to come home and I can't wait until he gets here. He's going to have a long list of appointments with virtually every department at the hospital, but he'll be home. I'll be able to see him and touch him and take care of him without driving 20 minutes to do it. He can sleep in my bed, or at least in my room, and be surrounded by love 24/7. I just know that he'll improve and progress so much faster when he's in a regular environment that allows him to grow and thrive like a normal baby.
I just can't believe how far this little boy has come and how much I miss him every day. It's funny, I was so worried that I wouldn't be able to love Jaxson as much as I love Jeffrey. Jeffrey is such a cool little kid and so perfect in so many ways. There's something about your first that nothing else compares to. But Jaxson found a way. He wasn't going to let his big brother have all of my love, he managed to find enough room in my heart to get the same amount of love that Jeffrey gets. I honestly didn't think it was possible, and I never believed my mom when she said she loved us all the same. But now I get it. I couldn't ask for better kids and I can't wait to show Jaxson what it's like to be around love all the time. He's a special baby and deserves everything we can give him. Even if he ends up with a few scars from a G-tube that gets him in the place he belongs earlier than if we didn't do it.
My nerves are pretty shot at this point. This was a big decision and I won't be able to be there for his surgery next week as I'll be back a work. But Jayson can be there. And I can call as often as I want. Is the right decision. I know it is.
In preparation for the G-tube placement, Jaxson had to have a contras scan to make sure that his anatomy is correct. Meaning, they had to know that his stomach was in the right place! I wasn't really worried, if it was not in the right spot then his NG tube wouldn't be working. And I was right, everything looked good on the scan.
Of course, the day that I tell them we want to move forward with the tube so that he can come home, he starts eating better. He at 43mL at 8am, they made me stop at 10mL at 11 because of the scan, but he ate a full bottle (60mL) at 2! Then 35mL and 23mL tonight. It's like he knows what's coming. And you know what? If that motivates him then all the better! I can back out of that surgery at any time before they do it. So if he decides that he suddenly wants to take off and eat like he's supposed to, then we'll wait and let him do it. He's going to be at the hospital for another 10 days most likely anyway, so if it's not going to extend that time and he comes home without a tube, then I'll take it! I'm really not holding my breath though. We'll do the tube and if he gets it back out in a month then that's what happens. But I want him to progress at his pace, not be forced into it before he's ready.
On the subject of food, I've been attempting to wean myself off of pumping as I return to work next week. I've chatted with other moms and struggled with my own demons. Initially I felt that I wouldn't be able to take the time at work to do it. It was my decision to stop, no one was forcing me. But as I've started this process I'm beginning to question myself. I want to give Jaxson everything that I can. I won't be able to be home with him during the day, and I feel that if I can produce for him then I should. No one is pushing me in that direction either. Even the lactation consultants have been really understanding in working with me on what's best for my family. So all of this back and forth is in my head. I got some good tips on how to slow down my production, but part of me doesn't want to do that. If I can just back off slowly then maybe I'll feel better. I've already gotten myself to every 4-5 hours without a problem, so I'd only have to pump once during a shift. I tried 6 hours today and thought I was going to die by the time I pumped again.
So I'm trying to figure out what the best course of action is, even though I think I've already made up my mind. And maybe once Jaxson comes home I'll feel differently about what I can do for him, but for now I think I need to keep doing what I'm doing. It's exhausting, and it's going to be a pain to cart my pump around and make sure that I have access to a plug o a regular basis. But I think it will be far more wearing on me to NOT pump and provide for my baby. Not to mention the emotional toll that stopping pumping takes on a woman's body anyway.
If you're still reading this, thanks for letting me process my thoughts and feelings as I write. If you haven't noticed, that's how I function best.
Jaxson is finally on pace to come home and I can't wait until he gets here. He's going to have a long list of appointments with virtually every department at the hospital, but he'll be home. I'll be able to see him and touch him and take care of him without driving 20 minutes to do it. He can sleep in my bed, or at least in my room, and be surrounded by love 24/7. I just know that he'll improve and progress so much faster when he's in a regular environment that allows him to grow and thrive like a normal baby.
I just can't believe how far this little boy has come and how much I miss him every day. It's funny, I was so worried that I wouldn't be able to love Jaxson as much as I love Jeffrey. Jeffrey is such a cool little kid and so perfect in so many ways. There's something about your first that nothing else compares to. But Jaxson found a way. He wasn't going to let his big brother have all of my love, he managed to find enough room in my heart to get the same amount of love that Jeffrey gets. I honestly didn't think it was possible, and I never believed my mom when she said she loved us all the same. But now I get it. I couldn't ask for better kids and I can't wait to show Jaxson what it's like to be around love all the time. He's a special baby and deserves everything we can give him. Even if he ends up with a few scars from a G-tube that gets him in the place he belongs earlier than if we didn't do it.
My nerves are pretty shot at this point. This was a big decision and I won't be able to be there for his surgery next week as I'll be back a work. But Jayson can be there. And I can call as often as I want. Is the right decision. I know it is.
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