Thursday, June 28, 2012
Quick Update
Being that I'm at work this will be a quick update! We had a non-stress test this morning and a growth check. Jaxson was a little sleepy, so it took a little longer, but he eventually cooperated. He also gained some weight and now registers 4lbs, 11oz. That puts him in the 4th or 5th percentile and on track to be about 6 pounds at birth. No other new concerns as the fluid looks good and Jeffrey was a small baby too. Current plan stays as is with a follow up growth check in 2 weeks.
Tuesday, June 26, 2012
Perspective and Concern
We've all heard the saying, "It could be worse," right? Well I gained some perspective from that saying yesterday. My mom's boss' grandson (Caden) is Jeffrey's age. He has been diagnosed with a malignant brain tumor. He's already undergone 3 or 4 surgeries and may need more. My heart breaks every time I get an update on little Caden because I can just picture Jeffrey laying in a hospital completely helpless and confused. I can't even imagine what it would be like to have a perfectly happy and healthy little boy one day and the next day find out that you're going to spend months with him in a hospital room.
So while most days I feel like I'm going to break down that I want to wake up from this horrible nightmare, I am trying to take something positive out of the situation. No, it's not fun and I do not anticipate it getting easier, but we have some things going for us. One, there are not likely to be any surprises. We may not know the exact extent of the disorder that Jaxson is going to have, but we do know that something is wrong and what the worst case scenario is. We know that he's going to need once surgery, at a minimum, and that he's going to spend at least a month in the hospital. Okay, those are things we can prepare for. Two, because we know those things, Jaxson will be in the very capable hands of some of the best doctors in the world at Children's. I take comfort in knowing that these doctors are at the top of their field in what they do. Three, this isn't a surprise. It's not something that's sneaking up on us. We know about it, we know there's going to be a plan. And while there are still a lot of unknowns, what we do know is enough.
My heart and prayers go out to Caden and his family. He's been such a trooper and he has been so strong. I know that Jaxson comes from good stock. He'll be strong and he'll be a fighter, just like his mommy and daddy. I know he'll pull through, even if it's not a smooth ride.
Something else I've taken comfort in is how helpful and accommodating everyone I've come into contact has been. The nurse coordinators at Children's have been very candid with me and Becky in particular has been extremely helpful. She's answered all of my questions and then some. I can't wait to meet her on the 6th when we go for our tour. The nurses and staff at Riverside Maternal Fetal are always upbeat and greet me by name before I sign in. They've helped coordinate my meeting with the neonatologist on the 3rd to find out how this process is going to start off at Riverside. Dr. Weller (cardiologist) has made me feel like Jaxson is in great hands. Dr. Harmon (OB/surgeon) and Dr. Burkam (family practice) have both been instrumental in helping me through this process as well. I couldn't ask for better people to work with or to be by my side as our journey continues.
I do have to share one concern that reared it's ugly head at me today, though. And it's something that I will have to figure out as I go, which we all know I love so much. I am concerned that Jeffrey isn't going to get the attention he needs from me. I know I'm going to spend a ton of time with Jaxson and he's going to be a big focus for me for a long time. But I don't want Jeffrey to ever think that I don't love him or that I don't want him by my side. He's an angel. But he's only three and he needs his mom too. Jayson and I are going to carve out time where I can take Jeffrey by myself for a few hours a week, but I'm scared that won't be enough. He's so much like me and yet so much like his father. I can't have him walking around thinking that his mom cares more about the new baby than him.
As everything gets closer, my body gets more tired and I become more emotionally drained. I'm so ready for Jaxson to come out and get his evaluation so we can know what's going on. I'm ready to have my body back so I can play with my Jeffrey and chase him around like I used to. More than anything, I'm ready to get this process started. The waiting to find out anything is the real killer here. I'm trying to be patient so that Jaxson can put on some weight, and I do take solace and comfort in everything mentioned above. After my appointments next week I'll be as ready as I can be. For now, though, I'll just have to keep being patient and taking life one day at a time.
So while most days I feel like I'm going to break down that I want to wake up from this horrible nightmare, I am trying to take something positive out of the situation. No, it's not fun and I do not anticipate it getting easier, but we have some things going for us. One, there are not likely to be any surprises. We may not know the exact extent of the disorder that Jaxson is going to have, but we do know that something is wrong and what the worst case scenario is. We know that he's going to need once surgery, at a minimum, and that he's going to spend at least a month in the hospital. Okay, those are things we can prepare for. Two, because we know those things, Jaxson will be in the very capable hands of some of the best doctors in the world at Children's. I take comfort in knowing that these doctors are at the top of their field in what they do. Three, this isn't a surprise. It's not something that's sneaking up on us. We know about it, we know there's going to be a plan. And while there are still a lot of unknowns, what we do know is enough.
My heart and prayers go out to Caden and his family. He's been such a trooper and he has been so strong. I know that Jaxson comes from good stock. He'll be strong and he'll be a fighter, just like his mommy and daddy. I know he'll pull through, even if it's not a smooth ride.
Something else I've taken comfort in is how helpful and accommodating everyone I've come into contact has been. The nurse coordinators at Children's have been very candid with me and Becky in particular has been extremely helpful. She's answered all of my questions and then some. I can't wait to meet her on the 6th when we go for our tour. The nurses and staff at Riverside Maternal Fetal are always upbeat and greet me by name before I sign in. They've helped coordinate my meeting with the neonatologist on the 3rd to find out how this process is going to start off at Riverside. Dr. Weller (cardiologist) has made me feel like Jaxson is in great hands. Dr. Harmon (OB/surgeon) and Dr. Burkam (family practice) have both been instrumental in helping me through this process as well. I couldn't ask for better people to work with or to be by my side as our journey continues.
I do have to share one concern that reared it's ugly head at me today, though. And it's something that I will have to figure out as I go, which we all know I love so much. I am concerned that Jeffrey isn't going to get the attention he needs from me. I know I'm going to spend a ton of time with Jaxson and he's going to be a big focus for me for a long time. But I don't want Jeffrey to ever think that I don't love him or that I don't want him by my side. He's an angel. But he's only three and he needs his mom too. Jayson and I are going to carve out time where I can take Jeffrey by myself for a few hours a week, but I'm scared that won't be enough. He's so much like me and yet so much like his father. I can't have him walking around thinking that his mom cares more about the new baby than him.
As everything gets closer, my body gets more tired and I become more emotionally drained. I'm so ready for Jaxson to come out and get his evaluation so we can know what's going on. I'm ready to have my body back so I can play with my Jeffrey and chase him around like I used to. More than anything, I'm ready to get this process started. The waiting to find out anything is the real killer here. I'm trying to be patient so that Jaxson can put on some weight, and I do take solace and comfort in everything mentioned above. After my appointments next week I'll be as ready as I can be. For now, though, I'll just have to keep being patient and taking life one day at a time.
Sunday, June 24, 2012
Frustrations
So Jayson and I went shopping for Jaxson yesterday. We bought his outfit to bring him home from the hospital, some booties and mittens and a few onesies. Then we realized that we have no idea what else to get. We don't know how long he's going to be in the hospital, or what we'll be responsible for providing while he's there. We have all of his furniture, but no blankets, bedding and the only clothes are what we got last night. We don't even know where to start. Or if he can have anything from home, like a soft toy or blanket, to have in his bed.
It's so frustrating, dealing with all of the unknowns. I'm a planner. I need to know how this is going to go down. And no one can tell me. I know there's a pretty solid chance he's going to need one surgery, so he'll be in the hospital for at least a month. But even that's not certain. There's a very small chance he won't require surgery, and there's a chance he'll require more than one surgery. How can I plan for that? How can I prepare myself for the mental and emotional toll that my body is about to go through? How can I make sure that Jaxson is going to have everything he needs if I don't even know what's going to happen?
The answer is that I can't. I can't plan. I can't control anything. And it's making me crazy. I'm not even sure how well I am preparing myself for what's to come. I mean, how do you prepare for it? I can research heart defects all I want, but it doesn't help because I don't know what the actual defect is. And I won't until he's born. How can I prepare for being away from my baby for a few days while I heal? I can ask other moms who've been there, but their experience isn't going to be the same as mine. No two experiences are identical. And how I deal with things is much different than how someone else might deal with it.
So there's only so much preparation I can do, and it's not going to be enough. And there's no planning that can happen because there's too much unknown. We have just over three weeks until this baby boy enters the world and I feel completely helpless and at a loss for what I'm supposed to do and how I'm supposed to do it. It's beyond frustrating. I hate not knowing what to do. I just want my baby to be okay and I want to make sure that I'm doing everything I possibly can to make it easier for him. So please, keep praying for baby Jaxson. That's about the only thing I can control at this point.To end on a lighter note, here are pictures of the outfit we bought yesterday:
It's so frustrating, dealing with all of the unknowns. I'm a planner. I need to know how this is going to go down. And no one can tell me. I know there's a pretty solid chance he's going to need one surgery, so he'll be in the hospital for at least a month. But even that's not certain. There's a very small chance he won't require surgery, and there's a chance he'll require more than one surgery. How can I plan for that? How can I prepare myself for the mental and emotional toll that my body is about to go through? How can I make sure that Jaxson is going to have everything he needs if I don't even know what's going to happen?
The answer is that I can't. I can't plan. I can't control anything. And it's making me crazy. I'm not even sure how well I am preparing myself for what's to come. I mean, how do you prepare for it? I can research heart defects all I want, but it doesn't help because I don't know what the actual defect is. And I won't until he's born. How can I prepare for being away from my baby for a few days while I heal? I can ask other moms who've been there, but their experience isn't going to be the same as mine. No two experiences are identical. And how I deal with things is much different than how someone else might deal with it.
So there's only so much preparation I can do, and it's not going to be enough. And there's no planning that can happen because there's too much unknown. We have just over three weeks until this baby boy enters the world and I feel completely helpless and at a loss for what I'm supposed to do and how I'm supposed to do it. It's beyond frustrating. I hate not knowing what to do. I just want my baby to be okay and I want to make sure that I'm doing everything I possibly can to make it easier for him. So please, keep praying for baby Jaxson. That's about the only thing I can control at this point.To end on a lighter note, here are pictures of the outfit we bought yesterday:
Saturday, June 23, 2012
Welcome
Welcome to Jaxson's Ride. Please visit the "About" section to be brought up to speed on why this blog exists. For me, as a writer, this will be a place where I can discuss how I'm feeling and update people about what is currently happening in our lives and the life of baby Jaxson.
For today, there's not much to report. I go twice a week for non-stress tests to make sure that Jaxson is doing okay. Those tests are due mainly to him being so small. I'm not overly concerned about his weight, though. Jeffrey was just over 6 pounds, Jayson was a 6 pound baby and I was 5 pounds. Jayson and I were never going to have big kids, so I'm not overly concerned about his weight, but I am going to the tests as I should to ensure that there are no problems that come up unexpectedly. We go next Thursday for a growth check to see how Jaxson is doing and make sure he's still growing.
As far as his heart goes, there are still a lot of unknowns. So I will tell you what we do know. I'm scheduled for a C-Section on July 17th. As long as Jaxson isn't in any distress, we will get to see him and hold him for a minute before he's taken to the NICU at Riverside for an evaluation. After the evaluation is complete, Jaxson will be transferred to Nationwide Children's Hospital for a more in-depth evaluation. I am told he will be brought to my room before he leaves so that I can say good-bye as I will be in the hospital recovering for a few days. Jayson will go to Children's with Jaxson and hear the doctor's report on what our next steps will be. While the doctor's will not diagnose anything at this point, I am told that it is very likely Jaxson will require at least one surgery on his aorta. Worst case scenario is Hypoplastic Left Heart Syndrome, which requires three surgeries, but it doesn't look like that's the case for now. Regardless, the one surgery he is likely to require will take place in his first week of life.
My biggest concern is being away from Jaxson when the initial evaluations are taking place. I will be stuck at Riverside healing from my own surgery when the doctors at Children's are evaluating Jaxson and determining the course of action that will be taken. He's going to have a slew of doctor's that I won't get to meet or talk to for days. I am comfortable with Jayson handling the situation. He's strong. He can make decisions. But I'm his mom. I should be there. I am also comfortable with the level of care that Jaxson will receive at Children's. It's one of the top Children's hospitals in the country, and Dr. Weller is one of the top doctors in his field. I trust him and I'm sure I'll trust the other doctors once I meet them. I just know the first few days of being away from Jaxson, combined with the emotions of giving birth in general, are going to be very difficult for me. I will have the support of my family, and I know I'll have plenty of company and visitors to distract me. But it doesn't take away from my need to be there for my baby and protect and love him as only a mother can.
For the time being, this blog is going to be a place where I can go over my feelings. Anyone reading this who knows me, knows how difficult it is for me to talk about my feelings. But you also know how easy it is for me to write things down. I will update with information on Jaxson as it comes and attempt to at least post how things go at each appointment until he is born, but this is mostly a place where I can put my feelings down and make sure they aren't bottled up only to explode later. I appreciate the love and support I've received from everyone so far. I've been overwhelmed by the outpouring of emotion I have received and know that I will continue to receive. Thank you to everyone from the bottom of my heart.
For today, there's not much to report. I go twice a week for non-stress tests to make sure that Jaxson is doing okay. Those tests are due mainly to him being so small. I'm not overly concerned about his weight, though. Jeffrey was just over 6 pounds, Jayson was a 6 pound baby and I was 5 pounds. Jayson and I were never going to have big kids, so I'm not overly concerned about his weight, but I am going to the tests as I should to ensure that there are no problems that come up unexpectedly. We go next Thursday for a growth check to see how Jaxson is doing and make sure he's still growing.
As far as his heart goes, there are still a lot of unknowns. So I will tell you what we do know. I'm scheduled for a C-Section on July 17th. As long as Jaxson isn't in any distress, we will get to see him and hold him for a minute before he's taken to the NICU at Riverside for an evaluation. After the evaluation is complete, Jaxson will be transferred to Nationwide Children's Hospital for a more in-depth evaluation. I am told he will be brought to my room before he leaves so that I can say good-bye as I will be in the hospital recovering for a few days. Jayson will go to Children's with Jaxson and hear the doctor's report on what our next steps will be. While the doctor's will not diagnose anything at this point, I am told that it is very likely Jaxson will require at least one surgery on his aorta. Worst case scenario is Hypoplastic Left Heart Syndrome, which requires three surgeries, but it doesn't look like that's the case for now. Regardless, the one surgery he is likely to require will take place in his first week of life.
My biggest concern is being away from Jaxson when the initial evaluations are taking place. I will be stuck at Riverside healing from my own surgery when the doctors at Children's are evaluating Jaxson and determining the course of action that will be taken. He's going to have a slew of doctor's that I won't get to meet or talk to for days. I am comfortable with Jayson handling the situation. He's strong. He can make decisions. But I'm his mom. I should be there. I am also comfortable with the level of care that Jaxson will receive at Children's. It's one of the top Children's hospitals in the country, and Dr. Weller is one of the top doctors in his field. I trust him and I'm sure I'll trust the other doctors once I meet them. I just know the first few days of being away from Jaxson, combined with the emotions of giving birth in general, are going to be very difficult for me. I will have the support of my family, and I know I'll have plenty of company and visitors to distract me. But it doesn't take away from my need to be there for my baby and protect and love him as only a mother can.
For the time being, this blog is going to be a place where I can go over my feelings. Anyone reading this who knows me, knows how difficult it is for me to talk about my feelings. But you also know how easy it is for me to write things down. I will update with information on Jaxson as it comes and attempt to at least post how things go at each appointment until he is born, but this is mostly a place where I can put my feelings down and make sure they aren't bottled up only to explode later. I appreciate the love and support I've received from everyone so far. I've been overwhelmed by the outpouring of emotion I have received and know that I will continue to receive. Thank you to everyone from the bottom of my heart.
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