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.
Sunday, August 26, 2012
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.
Thursday, August 9, 2012
Another Bump in the Road
So, this post will actually be about Jaxson! Julie has been transferred to a rehab facility and is slowly regaining her strength. Sara has been moved from ICU to the step-down unit as her numbers are finally where they should be. I've been as focused on Jaxson as I can be, but now I get to write about him again.
Jaxson is fully recovered from his infections and had his PICC line removed over the weekend. He had to get another IV on Tuesday because urology wanted an additional test before we started him on an antibiotic. It was a contrast renal scan that showed how his kidneys are functioning. Initially, and this is how it's reflected in his records, the ultrasound showed that Jaxson has two ureters on his left kidney. They call it a duplicated system. However, when I talked to urology this morning, I was left with the impression that the duplicated system is actually on the right. I need to get further clarification on this to see what the actual deal is, but right now it's not a huge concern. The scan showed that Jaxson's right kidney has low or no functionality on the lower right pole. That could mean there's just some fluid in the kidney or there could be a blockage.
It sounds scarier than it is. Urology says it's common for a duplicated system to have low functionality of some kind. Basically they will do another scan in a month to see how it's doing. If it is resolving itself, they don't do anything and will check back after three more months. If it has not resolved itself then they will discuss a plan to correct it. Which will likely involve surgery. But I'm not stressing about it now because there's a good chance that it will fix itself and this will be a nonissue. If it's another surgery then so be it. But I can't even think about it right now. Right now I just want to get this kid home.
We also got word that genetics wants to do further testing for more rare causes for Jaxson's issues. I'm not surprised. I was surprised when they said they weren't doing testing, so it wasn't a shock when they changed their minds. I'm not sure what all they're looking for, but if anything comes back positive I'll deal with it then. It's just another "what if" scenario I don't want to deal with unless I have to. So I'll keep you posted as I hear more and learn about whatever they find.
So now we have to work on getting Jaxson home. Tomorrow, Jayson and I will make the final decision to have a G-tube put in Jaxson's stomach. I'm sure that we'll decide to have it done because the ony thing keening Jaxson in the hospital is his ability to eat. Because of his cleft and other birth defects, he may never gain the ability to eat a full bottle by mouth. He can't live at the hospital, so while this isn't ideal, it is what it is. When we tell them the decision tomorrow, they'll get the surgery scheduled for next week and he'll be able to come home the week after. I cannot wait to walk out of that hospital knowing that the next time I come back it will be for an outpatient visit!
We're getting closer and closer to things being "normal". Or, rather, what normal is going to be for us from here on out. The social worker came to talk to me today too. She told me about some programs that we'll qualify for because of Jaxson's medical issues and she's going to hook me up with the rep they have at the hospital so I don't have to deal with regular state run offices. Jaxson can't go to daycare for a variety of reasons, but the one that qualifies him for assistance is the G-tube. I don't know of a single daycare that would accept a child with a tube in his belly. Too much liability. Please do not misunderstand. Jaxson should be taking 150mL by mouth every day. On average, he takes between 30 and 50. So the tube is not a ploy to qualify for government assistance, it is a legitimate need in order for him to come home and learn how to function in the real world.
Physical therapy also came by today. I guess we had a busy day! Jaxson will be fully evaluated tomorrow and a plan will be set to help him learn to use his muscles. I don't think I've mentioned before that he has low muscle tone, but he does. I was given some stretches to do with him and activities to do with him over the next few months to help him develop and grow.
Every single person I've come into contact with at Children's has been amazing. We've had a few nurses that weren't my favorite, but they are few and far between. I feel that we have been so blessed to be where we are and live so close to such an awesome place. I truly feel that Jaxson is getting the best care possible and that he's going to have an excellent plan in place when he leaves. I couldn't ask for more. These people are not only good at what they do, but they genuinely care about these babies and are devoted to delivering quality care while communicating every step with parents.
You know, a lot of people tell me this isn't fair and wonder why all of this is happening to my baby. Sure, I went through that. But now that I've come to terms with how Jaxson's life is going to go, and maybe "come to terms" isn't the right wording, but I get it. This isn't "happening" to my baby or me. Jaxson is a gift. He's taught me more about life in the last month than I have learned in 30 years. He's taught me patience (don't laugh haha!), he's taught me what it looks like to fight and keep on going when it would be so much easier to give up. He's taught me what true strength is and how much of my own strength I have and how to use it. He's taught me how to feel my feelings and understand my emotions, something my logical brain just couldn't comprehend before now. He's teaching me ow to be a better person and a better mom. I am nothing if not blessed by that perfect little boy who has endured so much already.
The road ahead is going to be long and it's going to be bumpy. But I have the best people in the world at my side to travel that road with me. As long as I have them and they have me, everything will be just fine.
Jaxson is fully recovered from his infections and had his PICC line removed over the weekend. He had to get another IV on Tuesday because urology wanted an additional test before we started him on an antibiotic. It was a contrast renal scan that showed how his kidneys are functioning. Initially, and this is how it's reflected in his records, the ultrasound showed that Jaxson has two ureters on his left kidney. They call it a duplicated system. However, when I talked to urology this morning, I was left with the impression that the duplicated system is actually on the right. I need to get further clarification on this to see what the actual deal is, but right now it's not a huge concern. The scan showed that Jaxson's right kidney has low or no functionality on the lower right pole. That could mean there's just some fluid in the kidney or there could be a blockage.
It sounds scarier than it is. Urology says it's common for a duplicated system to have low functionality of some kind. Basically they will do another scan in a month to see how it's doing. If it is resolving itself, they don't do anything and will check back after three more months. If it has not resolved itself then they will discuss a plan to correct it. Which will likely involve surgery. But I'm not stressing about it now because there's a good chance that it will fix itself and this will be a nonissue. If it's another surgery then so be it. But I can't even think about it right now. Right now I just want to get this kid home.
We also got word that genetics wants to do further testing for more rare causes for Jaxson's issues. I'm not surprised. I was surprised when they said they weren't doing testing, so it wasn't a shock when they changed their minds. I'm not sure what all they're looking for, but if anything comes back positive I'll deal with it then. It's just another "what if" scenario I don't want to deal with unless I have to. So I'll keep you posted as I hear more and learn about whatever they find.
So now we have to work on getting Jaxson home. Tomorrow, Jayson and I will make the final decision to have a G-tube put in Jaxson's stomach. I'm sure that we'll decide to have it done because the ony thing keening Jaxson in the hospital is his ability to eat. Because of his cleft and other birth defects, he may never gain the ability to eat a full bottle by mouth. He can't live at the hospital, so while this isn't ideal, it is what it is. When we tell them the decision tomorrow, they'll get the surgery scheduled for next week and he'll be able to come home the week after. I cannot wait to walk out of that hospital knowing that the next time I come back it will be for an outpatient visit!
We're getting closer and closer to things being "normal". Or, rather, what normal is going to be for us from here on out. The social worker came to talk to me today too. She told me about some programs that we'll qualify for because of Jaxson's medical issues and she's going to hook me up with the rep they have at the hospital so I don't have to deal with regular state run offices. Jaxson can't go to daycare for a variety of reasons, but the one that qualifies him for assistance is the G-tube. I don't know of a single daycare that would accept a child with a tube in his belly. Too much liability. Please do not misunderstand. Jaxson should be taking 150mL by mouth every day. On average, he takes between 30 and 50. So the tube is not a ploy to qualify for government assistance, it is a legitimate need in order for him to come home and learn how to function in the real world.
Physical therapy also came by today. I guess we had a busy day! Jaxson will be fully evaluated tomorrow and a plan will be set to help him learn to use his muscles. I don't think I've mentioned before that he has low muscle tone, but he does. I was given some stretches to do with him and activities to do with him over the next few months to help him develop and grow.
Every single person I've come into contact with at Children's has been amazing. We've had a few nurses that weren't my favorite, but they are few and far between. I feel that we have been so blessed to be where we are and live so close to such an awesome place. I truly feel that Jaxson is getting the best care possible and that he's going to have an excellent plan in place when he leaves. I couldn't ask for more. These people are not only good at what they do, but they genuinely care about these babies and are devoted to delivering quality care while communicating every step with parents.
You know, a lot of people tell me this isn't fair and wonder why all of this is happening to my baby. Sure, I went through that. But now that I've come to terms with how Jaxson's life is going to go, and maybe "come to terms" isn't the right wording, but I get it. This isn't "happening" to my baby or me. Jaxson is a gift. He's taught me more about life in the last month than I have learned in 30 years. He's taught me patience (don't laugh haha!), he's taught me what it looks like to fight and keep on going when it would be so much easier to give up. He's taught me what true strength is and how much of my own strength I have and how to use it. He's taught me how to feel my feelings and understand my emotions, something my logical brain just couldn't comprehend before now. He's teaching me ow to be a better person and a better mom. I am nothing if not blessed by that perfect little boy who has endured so much already.
The road ahead is going to be long and it's going to be bumpy. But I have the best people in the world at my side to travel that road with me. As long as I have them and they have me, everything will be just fine.
Monday, August 6, 2012
Five Day Update - Jaxson's Plan to Come Home
The last five days have been the longest, most exhausting days I have ever experienced. The day after I posted last, Sara went back to the ICU. I knew she had been transferred back there, but what I didn't expect was a phone call from my dad at 8:30pm telling me that I might want to head to the hospital. It was the start of a very long night.
As soon as Jayson got home from seeing Jaxson, I took off to go see my sister. Oxygen saturation plummeted. Possible heart injury. Fluid on her lungs. Heart rate sky high. Blood pressure low. Skin as cold as ice. Literally. Had I not seen her vitals, I would have thought she was dead. I kissed her and made sure she knew I was there, even though she couldn't respond because she was on pain meds. Then I discussed what to do about Ariella and Lexi with my parents. The doctors actually told us to "hang around for awhile." Which made us really nervous. They didn't know if she was going to make it through the night. So I offered to take the girls back to my parents house and take care of them for the night.
I might have a newborn, but I certainly don't feel like it because he hasn't been home yet. I forgot what it's like to only get 2 hours of broken sleep. And to listen to a baby cry. Ellie was really good most of the night, but when I put her down to pump, she became inconsolable. She had been fed and changed so I had no idea why she was crying, and at 5am I was at my wits end. But I got through it and when I picked her back up she was fine. She's still going through some withdrawals, so I'm sure that was part of it, but it was so frustrating. Neither Jeffrey nor Jaxson are big criers, so it was a new experience for me. One that made me appreciate how calm my kids are. And I know that Ellie is just a normal baby, she was just trying to tell me she wanted to be held. I'm just not used to it.
So at 8am on Friday I had to leave my parents and go to Children's to meet with Jaxson's doctor. We set a plan in motion for him to come home. Mind you, I hadn't been home in 12 hours or slept in nearly 24 hours. I managed to get the plan set (I'll get there shortly) and spend a few minutes with Jaxson before heading home. Thankfully, Jeffrey was down for a nap when I got there so I was able to grab a few Z's until he got up. Jayson had to work that night, and thank goodness Jeffrey is an amazing kid. He and I layed around all night.
Meanwhile, I'm getting updates on Sara throughout the day. Nothing much different than when I left. CT on heart and lungs negative for clots, still trying to figure out what is wrong with her. Finally diagnosed with disseminated intravascular coagulation (DIC, see this website http://www.nlm.nih.gov/medlineplus/ency/article/000573.htm). Liver enzymes at 10,000 when they should be 20. Kidney functions okay. EKG on heart normal. Started treatment. She became stable but was still critical.
I'm learning these things during the day as I'm trying to take care of my family, so focusing on both was nearly impossible. Jaxson's plan became to see how he did with his feeds over the next week and go from there. Learned what it meant if he had to come home with a feeding tube. Surprised I can even remember that, will get there shortly.
Saturday morning rolls around. I'm pumping before I head to the hospital. Jayson comes in, "Mom just called and said she needed me, I couldn't understand anything else." My response "Go." I knew what that meant. She either had a stroke or was having a stroke. He went to check on her. Definitely had a stroke. He convinced her to go to the hospital and spent most of the day there with her. I managed to squeeze in an hour with Jaxson, leaving Jeffrey at the clubhouse. They take Julie down for an MRI, Jayson comes home to do a tattoo. He then goes back to see his mom, swings by to see Jaxson and runs by his moms house to let her dog out and feed her. All the while I'm getting updates on Sara. She's doing better but not out of the woods. Jayson and I both crash Saturday night.
Sunday morning, yesterday, I can't even remember what we did. I know I went and saw Jaxson and Jayson went to see his mom and later to see Jaxson. But I think that most of the day we just watched TV and tried to stay up to date on everyone's health status. No change on anyone yesterday.
Today was more of the same. Sara's bloodwork is trending in the right direction. Still doing tests as now she has hyoetenson in her heart and lungs. Good news: they let my mom bring Ellie to the ICU. Sara hadn't seen her since Thursday. Still very critical, but stable. Julie is the same. They want to release her to a rehab facility, so we're working on that. Jayson and I are exhausted. I scraped the back fender on h car at the hospital (if people knew how to park, I wouldn't have cut that so close) and then I dropped my phone. It was a long day.
There is good news here, though. Jaxson got his PICC line out Saturday night. Since then, he's taken anywher from 10 to 38mL from the bottle! He took 22 for me today. Which bodes well for the plan we set in place. Jayson and I decided that we wanted to see how he did once the PICC came out and he was no longer on antibiotics. We are giving him a week to see what he does. On Friday we will reassess the situation and decide what our course of action is. If he's doing well, we may give him another week to see if he can start taking full feeds. If he's progressing, but not quickly, we may say okay it's time for a feeding tube. If we do that, it's still another week before he comes home. It would be his first surgery, making for a total of 4 in his first year. But if it gets him home, I'm okay with that. The tube goes directly in his stomach and cane be covered by a onesie, so the chances of it coming out or getting pulled out are slim to none. And we can guarantee that he's getting enough to eat to grow and be healthy. It's not ideal, but it is what it is.
So everyone is in a place where they're being taken care of and on the right track. Jaxson officially knows when I'm leaving and cried when I put him down today. I was able to calm him down before I left, but I was in tears as I left the hospital. I miss him so much. And I have to go back to work next week. Which is going to be a whole other adventure with scheduling. But we'll deal with it as it comes, just like everything else.
And through all of this, Jayson and I have bitten each others heads off and made the other cry. All with the understanding that it had nothing to do with us, but with everything going on around us. Today I asked Jayson what I could do to help him. He told me to know that he's not mad at me when he bites my head off. I laughed and told him I could do that as long as he understood that it wasn't his fault when I burst into tears. He laughed and said okay. That's just how we've been working. We've been a lot more open with each other, a lot more patient and a lot more understanding. I'm lucky to have such an amazing partner. I know I couldn't do it without him!
It's funny, this blog is designed to chronicle everything Jaxson is going through. But everything going on in my life directly affects Jaxson because it affects my ability to care for him and be there for him. With so much happening in the last few days, poor Jaxson hasn't seen much of his daddy. I've been there almost as much as before, but not quite as much on some days. And he's still fighting through with the help of some amazing nurses and doctors. He's such a strong little boy already, I can't wait to see how much stronger he ends up before this is over.
If you're the praying type, just pray for strength for Jayson and I to continue to do what we do. Understanding for both of us to know when the other is overwhelmed and needs a break. Strength for Jaxson to keep improving so he can come home. Continued understanding from Jeffrey and behavior that shows he's still okay. Pray for Sara and Julie's doctors, that they would ensure proper treatment so they can both come home. Pay for my parents, that they would be able to rest while taking care of a newborn and not kill each other in the process. That they would maintain their sanity as they try t care for two children and support their other two daughters. Pray that we all remain supportive of each other and find some peace on knowing that this is temporary.
Thank you to everyone who has sent me a message or a comment in the lat few days. Even if I haven't responded, I have read all of them. It means so much to hear from everyone, no matter how long it's been since we spoke. Thank you all for everything, and a special thank you to Phil, who brought us dinner on Saturday. The timing was perfect!
As soon as Jayson got home from seeing Jaxson, I took off to go see my sister. Oxygen saturation plummeted. Possible heart injury. Fluid on her lungs. Heart rate sky high. Blood pressure low. Skin as cold as ice. Literally. Had I not seen her vitals, I would have thought she was dead. I kissed her and made sure she knew I was there, even though she couldn't respond because she was on pain meds. Then I discussed what to do about Ariella and Lexi with my parents. The doctors actually told us to "hang around for awhile." Which made us really nervous. They didn't know if she was going to make it through the night. So I offered to take the girls back to my parents house and take care of them for the night.
I might have a newborn, but I certainly don't feel like it because he hasn't been home yet. I forgot what it's like to only get 2 hours of broken sleep. And to listen to a baby cry. Ellie was really good most of the night, but when I put her down to pump, she became inconsolable. She had been fed and changed so I had no idea why she was crying, and at 5am I was at my wits end. But I got through it and when I picked her back up she was fine. She's still going through some withdrawals, so I'm sure that was part of it, but it was so frustrating. Neither Jeffrey nor Jaxson are big criers, so it was a new experience for me. One that made me appreciate how calm my kids are. And I know that Ellie is just a normal baby, she was just trying to tell me she wanted to be held. I'm just not used to it.
So at 8am on Friday I had to leave my parents and go to Children's to meet with Jaxson's doctor. We set a plan in motion for him to come home. Mind you, I hadn't been home in 12 hours or slept in nearly 24 hours. I managed to get the plan set (I'll get there shortly) and spend a few minutes with Jaxson before heading home. Thankfully, Jeffrey was down for a nap when I got there so I was able to grab a few Z's until he got up. Jayson had to work that night, and thank goodness Jeffrey is an amazing kid. He and I layed around all night.
Meanwhile, I'm getting updates on Sara throughout the day. Nothing much different than when I left. CT on heart and lungs negative for clots, still trying to figure out what is wrong with her. Finally diagnosed with disseminated intravascular coagulation (DIC, see this website http://www.nlm.nih.gov/medlineplus/ency/article/000573.htm). Liver enzymes at 10,000 when they should be 20. Kidney functions okay. EKG on heart normal. Started treatment. She became stable but was still critical.
I'm learning these things during the day as I'm trying to take care of my family, so focusing on both was nearly impossible. Jaxson's plan became to see how he did with his feeds over the next week and go from there. Learned what it meant if he had to come home with a feeding tube. Surprised I can even remember that, will get there shortly.
Saturday morning rolls around. I'm pumping before I head to the hospital. Jayson comes in, "Mom just called and said she needed me, I couldn't understand anything else." My response "Go." I knew what that meant. She either had a stroke or was having a stroke. He went to check on her. Definitely had a stroke. He convinced her to go to the hospital and spent most of the day there with her. I managed to squeeze in an hour with Jaxson, leaving Jeffrey at the clubhouse. They take Julie down for an MRI, Jayson comes home to do a tattoo. He then goes back to see his mom, swings by to see Jaxson and runs by his moms house to let her dog out and feed her. All the while I'm getting updates on Sara. She's doing better but not out of the woods. Jayson and I both crash Saturday night.
Sunday morning, yesterday, I can't even remember what we did. I know I went and saw Jaxson and Jayson went to see his mom and later to see Jaxson. But I think that most of the day we just watched TV and tried to stay up to date on everyone's health status. No change on anyone yesterday.
Today was more of the same. Sara's bloodwork is trending in the right direction. Still doing tests as now she has hyoetenson in her heart and lungs. Good news: they let my mom bring Ellie to the ICU. Sara hadn't seen her since Thursday. Still very critical, but stable. Julie is the same. They want to release her to a rehab facility, so we're working on that. Jayson and I are exhausted. I scraped the back fender on h car at the hospital (if people knew how to park, I wouldn't have cut that so close) and then I dropped my phone. It was a long day.
There is good news here, though. Jaxson got his PICC line out Saturday night. Since then, he's taken anywher from 10 to 38mL from the bottle! He took 22 for me today. Which bodes well for the plan we set in place. Jayson and I decided that we wanted to see how he did once the PICC came out and he was no longer on antibiotics. We are giving him a week to see what he does. On Friday we will reassess the situation and decide what our course of action is. If he's doing well, we may give him another week to see if he can start taking full feeds. If he's progressing, but not quickly, we may say okay it's time for a feeding tube. If we do that, it's still another week before he comes home. It would be his first surgery, making for a total of 4 in his first year. But if it gets him home, I'm okay with that. The tube goes directly in his stomach and cane be covered by a onesie, so the chances of it coming out or getting pulled out are slim to none. And we can guarantee that he's getting enough to eat to grow and be healthy. It's not ideal, but it is what it is.
So everyone is in a place where they're being taken care of and on the right track. Jaxson officially knows when I'm leaving and cried when I put him down today. I was able to calm him down before I left, but I was in tears as I left the hospital. I miss him so much. And I have to go back to work next week. Which is going to be a whole other adventure with scheduling. But we'll deal with it as it comes, just like everything else.
And through all of this, Jayson and I have bitten each others heads off and made the other cry. All with the understanding that it had nothing to do with us, but with everything going on around us. Today I asked Jayson what I could do to help him. He told me to know that he's not mad at me when he bites my head off. I laughed and told him I could do that as long as he understood that it wasn't his fault when I burst into tears. He laughed and said okay. That's just how we've been working. We've been a lot more open with each other, a lot more patient and a lot more understanding. I'm lucky to have such an amazing partner. I know I couldn't do it without him!
It's funny, this blog is designed to chronicle everything Jaxson is going through. But everything going on in my life directly affects Jaxson because it affects my ability to care for him and be there for him. With so much happening in the last few days, poor Jaxson hasn't seen much of his daddy. I've been there almost as much as before, but not quite as much on some days. And he's still fighting through with the help of some amazing nurses and doctors. He's such a strong little boy already, I can't wait to see how much stronger he ends up before this is over.
If you're the praying type, just pray for strength for Jayson and I to continue to do what we do. Understanding for both of us to know when the other is overwhelmed and needs a break. Strength for Jaxson to keep improving so he can come home. Continued understanding from Jeffrey and behavior that shows he's still okay. Pray for Sara and Julie's doctors, that they would ensure proper treatment so they can both come home. Pay for my parents, that they would be able to rest while taking care of a newborn and not kill each other in the process. That they would maintain their sanity as they try t care for two children and support their other two daughters. Pray that we all remain supportive of each other and find some peace on knowing that this is temporary.
Thank you to everyone who has sent me a message or a comment in the lat few days. Even if I haven't responded, I have read all of them. It means so much to hear from everyone, no matter how long it's been since we spoke. Thank you all for everything, and a special thank you to Phil, who brought us dinner on Saturday. The timing was perfect!
Wednesday, August 1, 2012
Reality Check
It's been a few days since my last update, mostly because there hasn't been a whole lot to report and I've been too tired to post at the end of the day. So the biggest news is that Jaxson came off of his oxygen on Monday at 11:45am and has been holding his own ever since. That was one of the checkboxes keeping him in the NICU, so we can check it off and move on to the next one.
Aside from the 3 days of antibiotics Jaxson has left, the only other checkbox is his ability to eat from a bottle. Which is slowly moving in the right direction. He isn't eating much at each feed, but he's starting to at least take something. He ranges from 2mL to his max of 36mL. A full feed is 50mL for him right now, so that's what we need him to eat. Every time. On Friday, the doctor and I are going to see where his progress is with feeds as that will be his last day of antibiotics. He should get his PICC line out once those are completed, so the next step is what do we do to get him home.
There are a few things that can happen. One, he improves enough to get the feeding tube out and he comes home on his own. Two, he continues to progress, but not to where he needs to be for the tube to come out, so he comes home with a feeding tube. Three, Jaxson decides he's not ready to come home and throws us some other curve ball that keeps him there longer. I'm banking on him coming home with a feeding tube, as much as that will suck. But I guess if it gets him home then I'll take it. The question is when will that be? We know it will be at least one mor week after this one. Maybe more. It's all going to depend on Jaxson.
Which brings up the bulk of why I'm writing tonight. I go back to work on August 12. I went in to the bank today to talk with Lindsay about the schedule, which she is more than willing to work with me on. I thought I was ready to go back, I still think I am and the distraction will be nice. But I'm also freaking out about it. I trust Jayson with our kids 100%, but I'm a mom. I need to be home to take care of Jaxson. But I sure as heck can't quit my job. And I do think it will be good for me to get out of the house without going to the hospital. But Jaxson might not even be home at first, which is going to be even harder than if he were home. Because there will be days that I won't be able to go and see him. And that makes me sick.
Quite literally it makes me sick. I was up all last night sick to my stomach and I've been nauseous all day. I think this is why. My return to work is drawing near and Jaxson coming home is too. I will get zero bonding time with him. And all of the responsibility will fall on Jayson. I know he can handle it, and it's something we've prepared for with him switching jobs so that he is able to stay home. But I don't think I mentally and emotionally prepared myself for what that would mean with this baby. Jaxson is going to require so much attention and Jeffrey is not going to like sharing his daddy.
I don't know, maybe I'm making something out of nothing. I'm just so worked up about this whole situation. Everything is going in the right direction and here I am freaking out because I'm not ready for it. This is just not the way things are supposed to go when you have a baby. You're supposed to come home together, get used to each other, get on a schedule together, and then move forward with life. It's been 4 weeks today since Jaxson was born and I hardly feel like I have two kids. So now I get to adjust to having two kids at home while working a full time job and trying to get my Buckeyes website back on track. It's very overwhelming. And I'm not sure I can handle it.
Well, I will handle it I guess, it's just a matter of how well I handle it. And maybe I'll be fine when the time comes. Maybe it's just the anticipation that has me all worked up because there's still so much that's unknown. That's probably a lot of it, actually. I need to plan, and there is no plan. There can't be a plan because so much depends on Jaxson. The little guy is giving me an ulcer and he's barely a month old!
In better news, Ariella was discharged from the hospital today and is at home with my parents. Sara is on the mend too and we should have a plan for her discharge tomorrow after she talks to the doctors. It seems like everything is under control and stable for her right now, so hopefully it stays that way and she can get home to her baby very soon.
And I had my follow up with the doctor for my C-Section yesterday. I'm healing up nicely and I've lost 12.5 pounds. It's not as much as I would like, but I was given I the okay to ease into working out again. So hopefully I'll drop the rest of this weight pretty quickly. I know that exercise will help me stay even and less anxious as well.
So maybe I'm just feeling this way because everything is calming down. Life has been so busy and crazy between going into labor early, learning about Jaxson's unexpected issues, traveling between two hospitals to visit my son and my sister, and trying to keep up with my other son and husband. I think I just got used to crazy and didn't have time to think about anything else. Now I have to remember what reality is like and face it head on. Time for me to suck it up and do what's best for my family instead of hiding out and pretending like I can ignore the rest of the world.
I'm sure it's nothing a glass of wine can't handle, right?
Aside from the 3 days of antibiotics Jaxson has left, the only other checkbox is his ability to eat from a bottle. Which is slowly moving in the right direction. He isn't eating much at each feed, but he's starting to at least take something. He ranges from 2mL to his max of 36mL. A full feed is 50mL for him right now, so that's what we need him to eat. Every time. On Friday, the doctor and I are going to see where his progress is with feeds as that will be his last day of antibiotics. He should get his PICC line out once those are completed, so the next step is what do we do to get him home.
There are a few things that can happen. One, he improves enough to get the feeding tube out and he comes home on his own. Two, he continues to progress, but not to where he needs to be for the tube to come out, so he comes home with a feeding tube. Three, Jaxson decides he's not ready to come home and throws us some other curve ball that keeps him there longer. I'm banking on him coming home with a feeding tube, as much as that will suck. But I guess if it gets him home then I'll take it. The question is when will that be? We know it will be at least one mor week after this one. Maybe more. It's all going to depend on Jaxson.
Which brings up the bulk of why I'm writing tonight. I go back to work on August 12. I went in to the bank today to talk with Lindsay about the schedule, which she is more than willing to work with me on. I thought I was ready to go back, I still think I am and the distraction will be nice. But I'm also freaking out about it. I trust Jayson with our kids 100%, but I'm a mom. I need to be home to take care of Jaxson. But I sure as heck can't quit my job. And I do think it will be good for me to get out of the house without going to the hospital. But Jaxson might not even be home at first, which is going to be even harder than if he were home. Because there will be days that I won't be able to go and see him. And that makes me sick.
Quite literally it makes me sick. I was up all last night sick to my stomach and I've been nauseous all day. I think this is why. My return to work is drawing near and Jaxson coming home is too. I will get zero bonding time with him. And all of the responsibility will fall on Jayson. I know he can handle it, and it's something we've prepared for with him switching jobs so that he is able to stay home. But I don't think I mentally and emotionally prepared myself for what that would mean with this baby. Jaxson is going to require so much attention and Jeffrey is not going to like sharing his daddy.
I don't know, maybe I'm making something out of nothing. I'm just so worked up about this whole situation. Everything is going in the right direction and here I am freaking out because I'm not ready for it. This is just not the way things are supposed to go when you have a baby. You're supposed to come home together, get used to each other, get on a schedule together, and then move forward with life. It's been 4 weeks today since Jaxson was born and I hardly feel like I have two kids. So now I get to adjust to having two kids at home while working a full time job and trying to get my Buckeyes website back on track. It's very overwhelming. And I'm not sure I can handle it.
Well, I will handle it I guess, it's just a matter of how well I handle it. And maybe I'll be fine when the time comes. Maybe it's just the anticipation that has me all worked up because there's still so much that's unknown. That's probably a lot of it, actually. I need to plan, and there is no plan. There can't be a plan because so much depends on Jaxson. The little guy is giving me an ulcer and he's barely a month old!
In better news, Ariella was discharged from the hospital today and is at home with my parents. Sara is on the mend too and we should have a plan for her discharge tomorrow after she talks to the doctors. It seems like everything is under control and stable for her right now, so hopefully it stays that way and she can get home to her baby very soon.
And I had my follow up with the doctor for my C-Section yesterday. I'm healing up nicely and I've lost 12.5 pounds. It's not as much as I would like, but I was given I the okay to ease into working out again. So hopefully I'll drop the rest of this weight pretty quickly. I know that exercise will help me stay even and less anxious as well.
So maybe I'm just feeling this way because everything is calming down. Life has been so busy and crazy between going into labor early, learning about Jaxson's unexpected issues, traveling between two hospitals to visit my son and my sister, and trying to keep up with my other son and husband. I think I just got used to crazy and didn't have time to think about anything else. Now I have to remember what reality is like and face it head on. Time for me to suck it up and do what's best for my family instead of hiding out and pretending like I can ignore the rest of the world.
I'm sure it's nothing a glass of wine can't handle, right?
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