Whether I'm ready or not, my distance racing comeback is happening. I'm officially registered for my 10th half marathon. And it is two months from now. Yeah. Those who know me or follow this blog will know exactly which race I'm registered for too. The Walt Disney World 1/2 marathon. It will be my 10th year at the race either racing or coaching. 10 years! That is mind boggling to me. It doesn't feel like I've been slowly waddling my way through races for 10 years.
When I made the decision to do the 1/2 marathon this past January, I knew there was a good chance I'd be pregnant during the race (I ended up being 9 weeks prego on race day). I even told The Pilot that if I raced in 2013 that I would HAVE to race in 2014. I couldn't end my string of Disney races after 9 years. I had to commit for an even 10 and then let go of the Disney races (that sh!$ is expensive!). Type A/OCD much??
And so here we are. I'm 3.5 months postpartum and trying to figure out how to manage training with work, maintaining a household/home life and taking care of my special little Megatron. Yeah, not as easy as I thought. When I was still pregnant, I figured once baby arrived, I'd be able to run on the treadmill after the baby was down for the night. Know what happens when the baby goes down for the night? I go down for the night. As soon as that baby's eyes are closed, I race to finish getting ready for the next morning and then I go to bed. I'm so darn tired!
While I'm still trying to figure out the weekday workouts, I am slowly getting back into a weekend routine. Two weeks ago I did a 4 mile walk with Megatron in the run stroller. I was able to get up to Disney's minimum pace despite pushing all the extra weight so that was reassuring.
This past weekend, I snuck (which isn't a word apparently. But "I sneaked" doesn't sound right.) out of the house while The Pilot and Megatron were still sleeping and met up with some friends. I was obviously out of practice though. While I did charge my Garmin the night before, I didn't check the forecast. I threw on some clothes and was out the door. Half way to the trail it started to rain. Son of a! I had no rain gear with me. Not even a hat. I did have a hooded sweatshirt that was intended to put on AFTER the run so I could run an errand before going back home. On it went! I was about to run/walk 5 miles in the rain with a cotton sweatshirt. Ick.
It happened though! I did a run/walk combination and finished 5 miles in just over an hour. Not bad considering it's been MONTHS since I've gone that far and MONTHS since I've run at all. Having friends to chat with (or listed too when I was too winded to converse) made it go by so quickly. It was also nice to not have to push the stroller and be paranoid that the beast was going to wake up screaming 2.5 miles from the house. :) And for the record, I should have skipped the sweatshirt. It stopped raining about .5 mile into the run and then I was just hot. And it was heavy from that .5 mile it did get rained on. Oh well. I was just happy to get out there and try to feel normal again!
I at least had the sense to know I would basically be starting from scratch in terms of fitness so I have developed a "beginner" training plan despite this being my 10th half marathon. That means I only have 5 miles on the schedule again this weekend. I'm not positive when/where I will make it happen yet but it will happen! I just need to figure out how to get in at least one weekday walk/run or this race is going to be a train wreck. Just don't tell my BFF who is going to do the race with me. I bet she didn't sign up to be the last one to finish! :P
Tuesday, November 5, 2013
Thursday, October 31, 2013
What a strange trip its been
Last December I presented The Pilot with a gift, though I didn't share that story with the blog world until this past February. So in the last 10 months we went from the excitement of finding out Megatron was on his way, to having a 3-month-old Megatron squirming in our arms. It hasn't been the journey we expected but it's been a journey nonetheless and it's true....there is a new chief pilot in our lives! That 11-pound bucket of goo is certainly in charge now!
Wednesday, October 16, 2013
It Takes A Village
I believe in hand-written thank you cards. Call me old school but I think it is good etiquette and just the nice thing to do when someone gives you a gift or does something nice. Plus, getting snail mail is fun and stands out from the mass amounts of email that people receive these days.
Having said that though, it has been impossible to keep up with the thank you notes between the chaos of our challenges over the last 3 months and also because of the outpouring of support we have received. I did my "Thankful Thursday" post but we have even more people to thank since then!
My parents. You have been my rock since the day I came into this world. I don't even have the words to describe what it has meant to have you by my side through by far the most traumatic time of my life. Mom, I might be in my thirties now but I don't think I'll ever outgrow needing you especially when times get tough. You are always there, even when it's 5 am and I'm alone at Children's Hospital, 100% overwhelmed and send you an SOS text. Dad, watching you be a grandpa warms my heart.
My brother, sister-in-law and your amazing kids. You are all always my comic relief even during some dark times. Brent, having you in the waiting room during Megatron's surgery was a wonderful distraction. Dropping everything...including work, to make sure Megatron and I got back down to the hospital when The Pilot was away meant the world to me. Lia, he was only able to do those things because you were juggling not only the kids but also another crisis an hour away. Despite your dad being in the hospital, you somehow still managed to be there for us too. And my sweet niece and nephew. Boy I love you two crazy kids. The cards you made for Megatron cheered us all up and your hugs always make me feel better.
My in-laws. You've made the 2-hour drive to town multiple times at the drop of a hat to help us out. You've helped us keep information flowing to the extended family. Beth, you even whipped out a diagram of the liver when a radiologist was trying to explain a procedure and draw a little picture at the top of a consent form. Always prepared! Plus, your homemade cookies also go a long ways when it comes to comforting the soul! Steve, seeing Megatron smile at you is probably the cutest thing ever.
Lisa. What haven't you done? You have kept not just me and The Pilot fed with your amazing food but you've also jumped in to make sure our cats haven't missed a meal either! You even bought more cat food while we were stuck in the hospital unexpectedly! You coordinated a Meal Train to help other people take care of us. You were there when I got bad news about Megatron's post-op lab work and stepped in and told me what to do when my brain was completely scrambled. You held my sweet boy and even changed his diaper while I ran to pick up medications for him. I will never be able to thank you enough!
Kelly, Meg, Ann, Mary, Jenni, Kami, Marcia, Julie Sarah and Jim. You kept us fed with homemade meals, pizza delivery, grocery gift cards, hospital care bags and gift cards to use in the hospital cafeteria. You also kept the kind words coming which helped more than you will ever know.
Lindsay, Ann, Parker, Mike, Caryl, Cara, Derek, Melissa and Lisa for just showing up at the hospital. Smiling faces made the hospital seem a lot less like a prison!
Melissa. Marathoning brought us together. Your humor, foul mouth, realistic attitude and calm demeanor made you a shoe-in to be Megatron's pediatrician. You have acted as "translator" when I have had selective hearing when all the specialist called me using lots of big, scary words. You showed up at the hospital late at night to explain the PICU. You've answered every frantic call and text. You've answered every random call and text even though I told you I wouldn't be "that parent." You even called every CVS in a 15-mile radius when we couldn't find formula. You begged the GI specialist to take on Megatron despite her full case-load just because she was the "GI goddess" you knew Megatron needed. We also have to thank your husband (and his "jinglers") and your children for their patience because I know we have pulled you away from them more than once.
Katy, Megan and everyone at the pediatric office. Thank you for realizing you aren't just taking care of the patients but the parents too. You are amazing at what you do. Katy, not only do you take wonderful care of Megatron, but you also inspire me too. Next stop, 1/2 marathon training baby! ;) I WILL get back out there.
Julie, Lindsay, Lauren, Jessie and Lezlie. The best girlfriends I could have ever asked for. You stepped up with encouragement, humor, baby clothes out the wazoo, baby gear, a breast pump that ended up being a life-saver when my preemie baby wouldn't latch, an "edible arrangement" and a storybook that made me tear up and will surely become one of Megatron's favorites (it's already mine!). I love you all as if you were sisters.
Steve, Sharon, Matt, Patty, Penny, Don, Rick, Sharon, Ron and Dorie for the various support. Because of you, our house didn't fall apart and Megatron's bum was always diapered (despite us being unprepared to use disposable diapers for so long!)and clothed. Some of you were even on standby for when my parents weren't available. I am so thankful to have grown up with such amazing role models. I always have and always will consider you all my "extra parents."
My co-workers. Love, support, prayers, GIANT cards and flowers were coming fast and furious from all over Central Ohio. Your continued support is going to help me navigate the world of being a working mom so thank you in advance for that!
Robyn, Sue, Jennifer, Amy and Ann for helping me put things, post-Megatron's diagnosis, into perspective and for providing encouragement. We have to be tough mama bears to shoulder the stress when it comes to our extra special babies.
Marcy, Mandi, Rosemary and Shelly. You may not even realize how much a Vera Bradly bag, cute little newborn cloth diapers, a "rainforest" and a product recommendation have made our lives just a little easier.
Everyone on social media who have sent encouragement, prayers and lots and lots of "mojo." There have been a lot of hard days but reading (and re-reading) your comments has helped me remember that tomorrow is always a fresh start.
I know in my sleep-deprived, emotionally raw state, I have forgotten someone. If I have, I am deeply sorry. Trust me, your kindness didn't go unnoticed at the time.
Having said that though, it has been impossible to keep up with the thank you notes between the chaos of our challenges over the last 3 months and also because of the outpouring of support we have received. I did my "Thankful Thursday" post but we have even more people to thank since then!
My parents. You have been my rock since the day I came into this world. I don't even have the words to describe what it has meant to have you by my side through by far the most traumatic time of my life. Mom, I might be in my thirties now but I don't think I'll ever outgrow needing you especially when times get tough. You are always there, even when it's 5 am and I'm alone at Children's Hospital, 100% overwhelmed and send you an SOS text. Dad, watching you be a grandpa warms my heart.
My brother, sister-in-law and your amazing kids. You are all always my comic relief even during some dark times. Brent, having you in the waiting room during Megatron's surgery was a wonderful distraction. Dropping everything...including work, to make sure Megatron and I got back down to the hospital when The Pilot was away meant the world to me. Lia, he was only able to do those things because you were juggling not only the kids but also another crisis an hour away. Despite your dad being in the hospital, you somehow still managed to be there for us too. And my sweet niece and nephew. Boy I love you two crazy kids. The cards you made for Megatron cheered us all up and your hugs always make me feel better.
My in-laws. You've made the 2-hour drive to town multiple times at the drop of a hat to help us out. You've helped us keep information flowing to the extended family. Beth, you even whipped out a diagram of the liver when a radiologist was trying to explain a procedure and draw a little picture at the top of a consent form. Always prepared! Plus, your homemade cookies also go a long ways when it comes to comforting the soul! Steve, seeing Megatron smile at you is probably the cutest thing ever.
Lisa. What haven't you done? You have kept not just me and The Pilot fed with your amazing food but you've also jumped in to make sure our cats haven't missed a meal either! You even bought more cat food while we were stuck in the hospital unexpectedly! You coordinated a Meal Train to help other people take care of us. You were there when I got bad news about Megatron's post-op lab work and stepped in and told me what to do when my brain was completely scrambled. You held my sweet boy and even changed his diaper while I ran to pick up medications for him. I will never be able to thank you enough!
Kelly, Meg, Ann, Mary, Jenni, Kami, Marcia, Julie Sarah and Jim. You kept us fed with homemade meals, pizza delivery, grocery gift cards, hospital care bags and gift cards to use in the hospital cafeteria. You also kept the kind words coming which helped more than you will ever know.
Lindsay, Ann, Parker, Mike, Caryl, Cara, Derek, Melissa and Lisa for just showing up at the hospital. Smiling faces made the hospital seem a lot less like a prison!
Melissa. Marathoning brought us together. Your humor, foul mouth, realistic attitude and calm demeanor made you a shoe-in to be Megatron's pediatrician. You have acted as "translator" when I have had selective hearing when all the specialist called me using lots of big, scary words. You showed up at the hospital late at night to explain the PICU. You've answered every frantic call and text. You've answered every random call and text even though I told you I wouldn't be "that parent." You even called every CVS in a 15-mile radius when we couldn't find formula. You begged the GI specialist to take on Megatron despite her full case-load just because she was the "GI goddess" you knew Megatron needed. We also have to thank your husband (and his "jinglers") and your children for their patience because I know we have pulled you away from them more than once.
Katy, Megan and everyone at the pediatric office. Thank you for realizing you aren't just taking care of the patients but the parents too. You are amazing at what you do. Katy, not only do you take wonderful care of Megatron, but you also inspire me too. Next stop, 1/2 marathon training baby! ;) I WILL get back out there.
Julie, Lindsay, Lauren, Jessie and Lezlie. The best girlfriends I could have ever asked for. You stepped up with encouragement, humor, baby clothes out the wazoo, baby gear, a breast pump that ended up being a life-saver when my preemie baby wouldn't latch, an "edible arrangement" and a storybook that made me tear up and will surely become one of Megatron's favorites (it's already mine!). I love you all as if you were sisters.
Steve, Sharon, Matt, Patty, Penny, Don, Rick, Sharon, Ron and Dorie for the various support. Because of you, our house didn't fall apart and Megatron's bum was always diapered (despite us being unprepared to use disposable diapers for so long!)and clothed. Some of you were even on standby for when my parents weren't available. I am so thankful to have grown up with such amazing role models. I always have and always will consider you all my "extra parents."
My co-workers. Love, support, prayers, GIANT cards and flowers were coming fast and furious from all over Central Ohio. Your continued support is going to help me navigate the world of being a working mom so thank you in advance for that!
Robyn, Sue, Jennifer, Amy and Ann for helping me put things, post-Megatron's diagnosis, into perspective and for providing encouragement. We have to be tough mama bears to shoulder the stress when it comes to our extra special babies.
Marcy, Mandi, Rosemary and Shelly. You may not even realize how much a Vera Bradly bag, cute little newborn cloth diapers, a "rainforest" and a product recommendation have made our lives just a little easier.
Everyone on social media who have sent encouragement, prayers and lots and lots of "mojo." There have been a lot of hard days but reading (and re-reading) your comments has helped me remember that tomorrow is always a fresh start.
I know in my sleep-deprived, emotionally raw state, I have forgotten someone. If I have, I am deeply sorry. Trust me, your kindness didn't go unnoticed at the time.
Monday, October 7, 2013
I Have A Confession
While my blog in no way represents all aspects of my life and I'm not a completely open book, I feel like I need to come clean. Mostly for selfish reasons...I need to let this out.
I've been journaling since I was a kid and writing has always been an outlet for me. When I'm having a hard time processing a heavy subject, it's always helped to write about it. Sometimes if I can't seem to let something go, I'll write it down and it helps me move on. I'm hoping this blog post does that for me. I've never in my life had something weigh as heavily on my heart as this.
I've blogged about Megatron's surgery and how it's not fair but I haven't really gone into detail. At first it was because it felt like it wasn't important to share the details with the masses (or with strangers). It felt like if I shared all the details it would get everyone else all worked up. It was about self-preservation too. I wasn't ready to deal with the facts. I wasn't ready to deal with the flood of emotions that would come once I accepted our reality. I wasn't ready for everyone to really know what was going on for fear that we'd be getting a barrage of people asking questions, wanting to talk about it and know more. I wasn't ready to talk about it more. I still don't think I am but after avoiding people for the past month and realizing that this isn't going to go away, it feels like the right time to put it all out there.
It wasn't until after the surgeon got in and looked around inside Megatron that we officially knew his diagnosis, but we had a strong indication prior to the surgery based on the scans that were done. After 6 1/2 hours of surgery, the surgeon confirmed Megatron has biliary atresia. Once he confirmed that was in fact the condition, the surgeon performed the Kasai procedure. Basically, Megatron was born without a common bile duct. The bile duct is how bile flows out of the liver into the intestines to help with digestion. Without it, bile backs up in the liver, which will eventually cause the liver to fail. The Kasai procedure creates a passageway for the bile. As The Pilot describes it, the surgeon "hot wired" Megatron's intestines directly to his liver, hopefully creating the needed passageway for bile to flow through.
Here's where it gets difficult for me. The Kasai procedure is not a cure. The procedure is buying Megatron time to grow and get stronger. Only about 25-30% of kids born with this condition make it to adulthood with their own liver. That means 70-75% need a liver transplant. Sitting in the Children's Hospital GI clinic, holding my then 5-week-old baby, hearing he might need a liver transplant was the worst day of my life. That was nearly 2 months ago and I feel like I'm only just now grasping what that means. I wouldn't say I have accepted it yet. Quite the opposite actually. I'm more upset now than I was then. I didn't want to believe it. I went into the surgery thinking that maybe, just maybe, they'd find something else, fix it and we'd move on. But that wasn't to be.
My sweet, tiny boy has liver disease. Despite having surgery at 8 weeks old, he is not "fixed." There is a greater chance that he will need a liver transplant than not.. We're going to face infections and other complications. We're going to spend a lot of time at the GI Clinic at Children's. He is currently taking 6 medications. While that may go down a few once he's healed from surgery, he will take at least 2 medications for the rest of his life. He may always have trouble absorbing vitamins and nutrients. While he is growing well right now, he will be watched closely because he could easily stop growing due to not absorbing those vitamins and nutrients.
One of the first things that came to mind when we first heard the word transplant thrown out was "Oh my god. He's going to go on a transplant list and we will wait forever for a little baby liver to become available." Since they caught Megatron's biliary atresia so early, there is no reason to think the Kasai won't be a success. He didn't have substantial liver damage yet (not all babies are as lucky as we are to have an amazing pediatrician and a world-class Children's Hospital that were persistent in watching his jaundice so carefully). I still had to ask the question though. Where would he get a liver if he needed one? His GI doctor explained that more often than not it would come from an adult who was declared brain dead. They would cut off a small portion of the liver to give to a baby and the rest would go to a small adult. The liver is the only organ in the body that can regenerate itself, so I guess it isn't a big deal if someone is only getting a portion of a liver. Sometimes, they will do a living donor. A family member or other match can have part of their liver cut off and given to someone else. The doctor did explain though that they don't like to have parents be the donor because then the remaining parent has two patients to worry about. There is twice the risk. It sounds like that wouldn't be an option for us anyway since Megatron's blood type doesn't match mine or The Pilot's (the poor kid had to get a rare blood type based on the recessive parts of me and The Pilot's blood types!).
Like I mentioned though, the Kasai procedure will hopefully buy him time. The doctors have told us that the older, larger, and stronger Megatron is, the higher his chances are for having a successful transplant if he does need one sometime in the future.
Of course Megatron could be in that 25-30% that doesn't need a transplant. He might be like a boy a nurse in the GI clinic told me about. He's had the same GI doctor, and the same surgeon who performed the Kasai procedure on him when he was an infant. He's now 21 years old, 6'2", still has his liver and is now transferring to an adult doctor. He has "aged out" of Children's Hospital. I've focused on that a lot. That could be Megatron (though I highly doubt he'll be 6'2" considering I'm 5'3" and the The Pilot is 5'9"). There isn't any indication right now that that won't be our path. The odds are against us but it could happen. That's all I am holding onto right now....
...well, that, and the fact that this sweet boy is as cute as can be. He doesn't look sick. He hardly looks jaundice anymore. He doesn't have a big, distended, hard belly like some babies with this condition have. He's doing what normal babies his age (well, his adjusted age, since he was 5 weeks early) should do. He's starting to track with his eyes. He found his hands and loves to suck on his fingers. He is smiling. He's just our sweet boy that we are going to love no matter what. We joke that he's our defective baby, but he's still ours. We're going to stick to him like glue and navigate the world of biliary atresia together. While this diagnosis sucks and I would give anything to fix him, we're going to keep plugging away. We're going to do the best we can to take care of him. We've already been lucky enough to have some of the best doctors in the world looking after him. Like I mentioned in a previous post, we're just going to keep moving forward.
Having said that though, there have been and will continue to be a lot of tears, and lot of sleepless nights spent worrying more than the average new parent. Bear with me if you see me and I start to cry when asked about Megatron. Bear with me if I don't seem like my normal, organized self. Bear with me if I am forgetful or crabby from lack of sleep. Bear with me if I have no patience for petty problems anymore. Maybe people will just chalk it up to me being a new parent...though I think this may last as long as this sweet boy and I are on this Earth together.
After a particularly rough day, it was The Pilot who suggested I write it all down/blog about it. He knew I would probably feel better if I put it all into words. He had found it helpful to process it all by talking about it. He had to fill in some co-workers and by telling the story a couple times, it got easier each time. Since I've been on maternity leave for the last 11 weeks (just one more week left!), I've been a little more isolated. I haven't had to tell the story as many times and its still very raw for me. I do feel a little better getting it all out and I hope that by sharing it like this that more people will know what's going on with us. It might help them know a little more about Megatron's condition and why we may have been a bit distant lately. And to be honest, I'm somewhat hoping that the more I share on here, the less questions I may get in person. Because I still can't guarantee that I won't cry or get emotional when asked. I'm sure with time that will get easier.
I've been journaling since I was a kid and writing has always been an outlet for me. When I'm having a hard time processing a heavy subject, it's always helped to write about it. Sometimes if I can't seem to let something go, I'll write it down and it helps me move on. I'm hoping this blog post does that for me. I've never in my life had something weigh as heavily on my heart as this.
I've blogged about Megatron's surgery and how it's not fair but I haven't really gone into detail. At first it was because it felt like it wasn't important to share the details with the masses (or with strangers). It felt like if I shared all the details it would get everyone else all worked up. It was about self-preservation too. I wasn't ready to deal with the facts. I wasn't ready to deal with the flood of emotions that would come once I accepted our reality. I wasn't ready for everyone to really know what was going on for fear that we'd be getting a barrage of people asking questions, wanting to talk about it and know more. I wasn't ready to talk about it more. I still don't think I am but after avoiding people for the past month and realizing that this isn't going to go away, it feels like the right time to put it all out there.
It wasn't until after the surgeon got in and looked around inside Megatron that we officially knew his diagnosis, but we had a strong indication prior to the surgery based on the scans that were done. After 6 1/2 hours of surgery, the surgeon confirmed Megatron has biliary atresia. Once he confirmed that was in fact the condition, the surgeon performed the Kasai procedure. Basically, Megatron was born without a common bile duct. The bile duct is how bile flows out of the liver into the intestines to help with digestion. Without it, bile backs up in the liver, which will eventually cause the liver to fail. The Kasai procedure creates a passageway for the bile. As The Pilot describes it, the surgeon "hot wired" Megatron's intestines directly to his liver, hopefully creating the needed passageway for bile to flow through.
Here's where it gets difficult for me. The Kasai procedure is not a cure. The procedure is buying Megatron time to grow and get stronger. Only about 25-30% of kids born with this condition make it to adulthood with their own liver. That means 70-75% need a liver transplant. Sitting in the Children's Hospital GI clinic, holding my then 5-week-old baby, hearing he might need a liver transplant was the worst day of my life. That was nearly 2 months ago and I feel like I'm only just now grasping what that means. I wouldn't say I have accepted it yet. Quite the opposite actually. I'm more upset now than I was then. I didn't want to believe it. I went into the surgery thinking that maybe, just maybe, they'd find something else, fix it and we'd move on. But that wasn't to be.
My sweet, tiny boy has liver disease. Despite having surgery at 8 weeks old, he is not "fixed." There is a greater chance that he will need a liver transplant than not.. We're going to face infections and other complications. We're going to spend a lot of time at the GI Clinic at Children's. He is currently taking 6 medications. While that may go down a few once he's healed from surgery, he will take at least 2 medications for the rest of his life. He may always have trouble absorbing vitamins and nutrients. While he is growing well right now, he will be watched closely because he could easily stop growing due to not absorbing those vitamins and nutrients.
One of the first things that came to mind when we first heard the word transplant thrown out was "Oh my god. He's going to go on a transplant list and we will wait forever for a little baby liver to become available." Since they caught Megatron's biliary atresia so early, there is no reason to think the Kasai won't be a success. He didn't have substantial liver damage yet (not all babies are as lucky as we are to have an amazing pediatrician and a world-class Children's Hospital that were persistent in watching his jaundice so carefully). I still had to ask the question though. Where would he get a liver if he needed one? His GI doctor explained that more often than not it would come from an adult who was declared brain dead. They would cut off a small portion of the liver to give to a baby and the rest would go to a small adult. The liver is the only organ in the body that can regenerate itself, so I guess it isn't a big deal if someone is only getting a portion of a liver. Sometimes, they will do a living donor. A family member or other match can have part of their liver cut off and given to someone else. The doctor did explain though that they don't like to have parents be the donor because then the remaining parent has two patients to worry about. There is twice the risk. It sounds like that wouldn't be an option for us anyway since Megatron's blood type doesn't match mine or The Pilot's (the poor kid had to get a rare blood type based on the recessive parts of me and The Pilot's blood types!).
Like I mentioned though, the Kasai procedure will hopefully buy him time. The doctors have told us that the older, larger, and stronger Megatron is, the higher his chances are for having a successful transplant if he does need one sometime in the future.
Of course Megatron could be in that 25-30% that doesn't need a transplant. He might be like a boy a nurse in the GI clinic told me about. He's had the same GI doctor, and the same surgeon who performed the Kasai procedure on him when he was an infant. He's now 21 years old, 6'2", still has his liver and is now transferring to an adult doctor. He has "aged out" of Children's Hospital. I've focused on that a lot. That could be Megatron (though I highly doubt he'll be 6'2" considering I'm 5'3" and the The Pilot is 5'9"). There isn't any indication right now that that won't be our path. The odds are against us but it could happen. That's all I am holding onto right now....
...well, that, and the fact that this sweet boy is as cute as can be. He doesn't look sick. He hardly looks jaundice anymore. He doesn't have a big, distended, hard belly like some babies with this condition have. He's doing what normal babies his age (well, his adjusted age, since he was 5 weeks early) should do. He's starting to track with his eyes. He found his hands and loves to suck on his fingers. He is smiling. He's just our sweet boy that we are going to love no matter what. We joke that he's our defective baby, but he's still ours. We're going to stick to him like glue and navigate the world of biliary atresia together. While this diagnosis sucks and I would give anything to fix him, we're going to keep plugging away. We're going to do the best we can to take care of him. We've already been lucky enough to have some of the best doctors in the world looking after him. Like I mentioned in a previous post, we're just going to keep moving forward.
Having said that though, there have been and will continue to be a lot of tears, and lot of sleepless nights spent worrying more than the average new parent. Bear with me if you see me and I start to cry when asked about Megatron. Bear with me if I don't seem like my normal, organized self. Bear with me if I am forgetful or crabby from lack of sleep. Bear with me if I have no patience for petty problems anymore. Maybe people will just chalk it up to me being a new parent...though I think this may last as long as this sweet boy and I are on this Earth together.
After a particularly rough day, it was The Pilot who suggested I write it all down/blog about it. He knew I would probably feel better if I put it all into words. He had found it helpful to process it all by talking about it. He had to fill in some co-workers and by telling the story a couple times, it got easier each time. Since I've been on maternity leave for the last 11 weeks (just one more week left!), I've been a little more isolated. I haven't had to tell the story as many times and its still very raw for me. I do feel a little better getting it all out and I hope that by sharing it like this that more people will know what's going on with us. It might help them know a little more about Megatron's condition and why we may have been a bit distant lately. And to be honest, I'm somewhat hoping that the more I share on here, the less questions I may get in person. Because I still can't guarantee that I won't cry or get emotional when asked. I'm sure with time that will get easier.
Monday, September 30, 2013
Playing that card...
I've tried so hard not to play the "this isn't fair" card but it's a challenge to keep a positive attitude all day, every day. Especially since we are now on day 13 of staying at Children's Hospital. Megatron was in the hospital for 8 days after surgery but then a week after discharge, at his follow-up appointment, his lab work came back wonky. We went back to the hospital, he went back under anesthesia and had some gunk drained from around his liver. We are still waiting on the results and a plan. For now, I feel trapped in this hospital. I want to go home.
Walking around a Children's Hospital is interesting. Sometimes it is sad to see so many kids with some pretty terrible conditions. Sometimes it is refreshing because despite being in a not so fun situation, so many of these kids still do what they do best, be kids. There is a kid on the surgical floor we are on that has been here for a couple months. MONTHS. Yet he was using his IV pole as a scooter and was rolling around the halls. Kids really can find the fun in just about everything.
And then there are the scenes that make me want to play the "this isn't fair" card. The Pilot and I did everything right. Megatron was very much planned. We even aimed to have him at a certain time of the year when I wouldn't be so busy at work (didn't exactly work but you get my point). This baby was wanted right from the beginning. I took every precaution, even the ones that probably weren't necessary but I didn't want to take any risks. I didn't have any caffeine or alcohol my entire pregnancy. I didn't get my hair colored. I didn't even get a pedicure until my 3rd trimester (and ultimately the week before he arrived). I ate healthy. I exercised. Yet my poor Megatron was still born with some missing/broken parts. That's how it goes I suppose. But then I walk around Children's Hospital and you see parenting at its worst.
I had an interaction with a man in the elevator. He looked like a meth addict. I hate to judge based on looks but he was filthy, smelled and had that meth head look. He then told me his little girl was mauled by a pit bull. Umm...ok. The Pilot rode the elevator with a large man who commented that it was ironic that he was going outside to smoke while his kid was about to start a breathing treatment. Wandering around the halls and all the different departments, we've seen parents who obviously have no interest in their kids. Parents who have done something (or not done anything at all --neglect) that have landed their kid here. And it's not fair. Why is is that we did everything right and we have spent 13 days here? And we will most likely be bringing Megatron here for follow-up appointments with a GI specialist until he's 18 or possibly 21 when he will transfer to an adult doctor. We did everything right but that is going to be our reality. It's just frustrating.
But then I'm put in my place. I see a child in a wheelchair who obviously has very little brain function and requires a nurse 24 hours a day. I hear parents being paged back to the pediatric intensive care floor. Sigh. My baby, while still sick, can be treated. It's going to be a rough road for us for sure but at this point, he can still be treated. I try so hard to focus on that. I try so hard to focus on those things I mentioned in my last post. We do have so much to be thankful for. I thought of something else to add to my list. I'll be going back to work in 2 weeks. Once we are all back home and we get into a routine that involves both of us working, and Megatron in day care or with my mom, our time will always be divided. We will be pulled between work, keeping the household running and caring for our little man and ourselves. Once we leave the hospital, it simply won't be possible to focus 100% of our attention on Megatron. When you are trapped in a small hospital room, it is easy to find yourself just staring at a sleeping baby. It's easy to tend to every fuss and cry within seconds of the sound escaping from that tiny body. It's easy to focus and entertain the short-attention span of an 11-week-old. Once home, his cry might have to wait another few minutes while a load of laundry is thrown in the wash. Once home, as soon as his blinks start to slow and his eyes finally close, it will be a mad dash to get as much accomplished as possible until he's ready to be entertained again. I'd give anything to take him home right now but I'm also trying to cherish the time we are getting to spend together because while nurses and doctors pop in from time to time, it's mostly uninterrupted family time. Not many people get that opportunity.
It hasn't been all bad. I haven't been confined to the hospital walls completely. The Pilot was gone on a 4-day trip last week when Megatron and I returned to the hospital. After being slightly traumatized by that experience and calling in the reinforcements (our families), when The Pilot returned, he sent me home for the night. I slept through the night for the first time in over 4 months. It was glorious. Between the past 2 months of middle-of-the-night feedings and before that, having little man pushing on my bladder while I was still pregnant, I was long long long overdue for a good night's sleep. I then also ran out to get my hair cut and colored yesterday! A task I had wanted to do before I had Megatron but his early arrival changed those plans!
Those small things (that felt like big things at the time!) helped me regroup. The timing was good because we are still in the hospital and The Pilot is getting ready to leave on another trip. I'm trying to pump myself up. While we have tons of help, when going through something crappy like this, I only want The Pilot by my side. We are both stressed out and our nerves are shot but sticking together has made it all a little easier. We've been pulling out all the stops to keep the mood light. Of course our sense of humor maybe misunderstood (especially if we happen to, in good fun, refer to Megatron as our defective baby) but humor is just about the only thing keeping me together at this point. It's the only thing keeping me from losing it completely and yelling out "it's not fair!"
Walking around a Children's Hospital is interesting. Sometimes it is sad to see so many kids with some pretty terrible conditions. Sometimes it is refreshing because despite being in a not so fun situation, so many of these kids still do what they do best, be kids. There is a kid on the surgical floor we are on that has been here for a couple months. MONTHS. Yet he was using his IV pole as a scooter and was rolling around the halls. Kids really can find the fun in just about everything.
Hey mom, I might be laying in a hospital crib but as long as you're here, I'm having fun!
And then there are the scenes that make me want to play the "this isn't fair" card. The Pilot and I did everything right. Megatron was very much planned. We even aimed to have him at a certain time of the year when I wouldn't be so busy at work (didn't exactly work but you get my point). This baby was wanted right from the beginning. I took every precaution, even the ones that probably weren't necessary but I didn't want to take any risks. I didn't have any caffeine or alcohol my entire pregnancy. I didn't get my hair colored. I didn't even get a pedicure until my 3rd trimester (and ultimately the week before he arrived). I ate healthy. I exercised. Yet my poor Megatron was still born with some missing/broken parts. That's how it goes I suppose. But then I walk around Children's Hospital and you see parenting at its worst.
I had an interaction with a man in the elevator. He looked like a meth addict. I hate to judge based on looks but he was filthy, smelled and had that meth head look. He then told me his little girl was mauled by a pit bull. Umm...ok. The Pilot rode the elevator with a large man who commented that it was ironic that he was going outside to smoke while his kid was about to start a breathing treatment. Wandering around the halls and all the different departments, we've seen parents who obviously have no interest in their kids. Parents who have done something (or not done anything at all --neglect) that have landed their kid here. And it's not fair. Why is is that we did everything right and we have spent 13 days here? And we will most likely be bringing Megatron here for follow-up appointments with a GI specialist until he's 18 or possibly 21 when he will transfer to an adult doctor. We did everything right but that is going to be our reality. It's just frustrating.
But then I'm put in my place. I see a child in a wheelchair who obviously has very little brain function and requires a nurse 24 hours a day. I hear parents being paged back to the pediatric intensive care floor. Sigh. My baby, while still sick, can be treated. It's going to be a rough road for us for sure but at this point, he can still be treated. I try so hard to focus on that. I try so hard to focus on those things I mentioned in my last post. We do have so much to be thankful for. I thought of something else to add to my list. I'll be going back to work in 2 weeks. Once we are all back home and we get into a routine that involves both of us working, and Megatron in day care or with my mom, our time will always be divided. We will be pulled between work, keeping the household running and caring for our little man and ourselves. Once we leave the hospital, it simply won't be possible to focus 100% of our attention on Megatron. When you are trapped in a small hospital room, it is easy to find yourself just staring at a sleeping baby. It's easy to tend to every fuss and cry within seconds of the sound escaping from that tiny body. It's easy to focus and entertain the short-attention span of an 11-week-old. Once home, his cry might have to wait another few minutes while a load of laundry is thrown in the wash. Once home, as soon as his blinks start to slow and his eyes finally close, it will be a mad dash to get as much accomplished as possible until he's ready to be entertained again. I'd give anything to take him home right now but I'm also trying to cherish the time we are getting to spend together because while nurses and doctors pop in from time to time, it's mostly uninterrupted family time. Not many people get that opportunity.
It hasn't been all bad. I haven't been confined to the hospital walls completely. The Pilot was gone on a 4-day trip last week when Megatron and I returned to the hospital. After being slightly traumatized by that experience and calling in the reinforcements (our families), when The Pilot returned, he sent me home for the night. I slept through the night for the first time in over 4 months. It was glorious. Between the past 2 months of middle-of-the-night feedings and before that, having little man pushing on my bladder while I was still pregnant, I was long long long overdue for a good night's sleep. I then also ran out to get my hair cut and colored yesterday! A task I had wanted to do before I had Megatron but his early arrival changed those plans!
Those small things (that felt like big things at the time!) helped me regroup. The timing was good because we are still in the hospital and The Pilot is getting ready to leave on another trip. I'm trying to pump myself up. While we have tons of help, when going through something crappy like this, I only want The Pilot by my side. We are both stressed out and our nerves are shot but sticking together has made it all a little easier. We've been pulling out all the stops to keep the mood light. Of course our sense of humor maybe misunderstood (especially if we happen to, in good fun, refer to Megatron as our defective baby) but humor is just about the only thing keeping me together at this point. It's the only thing keeping me from losing it completely and yelling out "it's not fair!"
Thursday, September 19, 2013
Thankful Thursday
Lately we've been very overwhelmed by life in general. Learning to be parents while also dealing with an infant with a medical condition has been by far the most stressful thing we've ever been though. After 8 days, Megatron came home from the hospital after his surgery. We are still in a "wait and see" period as to if the surgery was a success but he is doing really well. We are cautiously optimistic.
We've also been incredibly thankful. That thankfulness is something I'm trying to focus on. It helps me stay focused on the positive rather than the overwhelming stress. And as a list maker, I made a list to help me stay focused.
So thankful for (in no particular order):
We've also been incredibly thankful. That thankfulness is something I'm trying to focus on. It helps me stay focused on the positive rather than the overwhelming stress. And as a list maker, I made a list to help me stay focused.
So thankful for (in no particular order):
- Nationwide Children's Hospital and the amazing staff. Especially the PICU nurses. The overnight nurse never left our room. Megatron was his only patient and he walked us through everything and reassured us each step of the way. We're also very thankful to have a world class children's hospital right in our backyard.
- Our pediatrician. While Megatron's surgery and GI issues are being addressed by specialists, our pediatrician was the one who stayed on top of the lab results those first couple weeks of his life and made the call to send us to a specialist. She also showed up at the hospital while Megatron was in surgery and waited with us. She was there when the surgeon spoke with us (and then translated the medical mumbojumbo for us) and she stayed with us while Megatron was taken from surgery down to the PICU. She explained what we would expect when we saw him for the first time which definitely made it a lot less scary. And did I mention that this was all after she worked a full day? I'm sure it was after 10 pm when she left the hospital.
- Our families. They have been with us each step of the way since Megatron's early arrival. Both sets of our parents were with us most of the day while Megatron was in surgery. My brother was there also. My sister-in-law was with my niece and nephew so my brother could be with us. My niece and nephew made cards for Megatron to cheer him up after surgery. I think we both would have cracked under the pressure without their support.
- Our friends. I cannot even begin to explain how touched I am by our friends. They stepped up in ways that have often left me speechless. They have dropped off meals, snacks, hospital care bags, even gift cards to use at the cafeteria in the hospital (8 days of meals in a hospital can add up!). They helped feed our cats, take in the mail and bring the trash cans back to the house. They sent cards and emails full of encouragement. They texted and sent Facebook love. They added us to prayer lists. They visited us in the hospital. I will never be able to repay them for everything they have done (and I'm sure will continue to do as we go through the recovery process).
- A 12-week maternity leave. I'm still on maternity leave. Not having to even think about trying to work through all of this has been priceless. I don't think I could have done it! It has allowed me to be with Megatron through all of this without even thinking about working around a work schedule.
- FMLA. The Pilot took 6 weeks of leave after Megatron was born. We decided to have him take an extended leave, even though it was unpaid, because his job is so unique. It's one thing if he went to work and came back each night. I wouldn't have the luxury of getting a break each evening if he worked a normal 9-5 job. The Pilot going back to work could mean me being on my own with Megatron for days at a time. So to help us all figure out the learning curve, he stayed home for 6 weeks. Then Megatron needed surgery. The Pilot went back to work for a week and now has taken another 2 weeks of FMLA so he could be here for the surgery and recovery.
- An emergency fund. Eight weeks of no income for The Pilot and 12 weeks of reduced income for me and now a mountain of medical bills. Scary. I'm so thankful that we have an emergency fund. Granted we always thought that fund would be used in case The Pilot was furloughed but that back-up plan is keeping us from also having a financial crisis.
- Humor and Forgiveness. I've sometimes wondered how I would react in a crisis and how The Pilot and I would handle a crisis together. Luckily we haven't lost our sense of humor. It really is a coping mechanism. We've done our best to see the fun in an awful situation. While there was been A LOT of tears over the last couple weeks, and the last 8 days in particular, there have been a lot of laughs. It's also been important for us to forgive. You simply cannot hold anything against each other. Especially for anything that is said or done between the hours of 9 pm and 7 am. Nights are tough. It feels like we are reliving the first 2 weeks of Megatron's life again in terms of sleep deprivation. It's easy to snap at each other in the middle of the night when your baby is screaming and you don't know if its because he's hungry or if he's in pain from the major abdominal surgery. Once the sun comes up though, all is forgiven/forgotten. You get to start over. Ultimately though, I'm thankful for my husband. We've been a team from the day we got married and we've handled this situation as a team.
- Wifi and cell phones. While The Pilot and I are still living in the stone ages with our "dumb phones," we were able to keep friends and family updated throughout this hospital stay. We had a laptop with us in the hospital (which had wifi) so we could sort of stay in touch with the "outside" world. Time seemed to stand still while we were in the hospital so zombies could have taken over the world and we wouldn't have known but at least we were able to send out updates to friends and family.
- Quilted toilet paper. We basically lived in the hospital since the day before surgery. It's sort of a combination of a bad hotel and a dorm room. It took us a couple days of using sandpaper for toilet paper before bringing a roll from home. :)
- Microsoft Excel. I'm a planner. I like to be organized. Normally I thrive when it comes to lots of little details. But for some reason I was completely overwhelmed by the medications Megatron needs. I've been terrified to mess it up. Some are once a day. Some twice a day and then there is one that is every OTHER day. The doses are all different. Two of them can be put directly into his bottle. There is a basket in our kitchen full of dosing syringes and bottles of medications. I needed a spreadsheet. I basically made a sheet with each medication and when it needs to be taken so whomever is caring for Megatron can just check off the medications that he has received so none are forgotten.
Sunday, September 8, 2013
Working Up a Sweat...On A Learning Curve
This past week I hit the trail near my house with Megatron in the BOB twice. The first walk was just the two of us burning up the trail. Not really. I did 2.5 miles at a really slow pace. The Pilot joined us for a second walk of about 3 miles. Again, it was slow going but it felt good to work up a sweat. I wore the Garmin more out of curiosity to see where I'm at after such a long stretch of not working out.
There is a big learning curve for me though. One, I feel like I'm starting from scratch. As in, back in 2004 when I walked my first mile to train for a 1/2 marathon. Two, I'm pushing 40+ pounds of stroller, infant seat and infant. Three, I'm still carrying about 8 extra pounds of my own weight. I realize that is pretty good for only 8 weeks post-partem but it certainly changes my gait. That's not even considering the other physical changes to my hips and all that jazz.
I'm going to have to get used to pushing the stroller because when The Pilot is away, I can't just not work out. Megatron best get used to the BOB too! Since I have to obviously use at least one hand to push the stroller, I can't get into a the proper race walk form (or run for that matter). I tried to push with one hand and walking to the side of the stroller so I could at least swing the other arm but that felt awkward and I kept kicking the tire. I think it will just take some practice and trying different things until I get the hang of it. I also discovered that the beautiful, tree-lined streets in our neighborhood make for very bumpy sidewalks. Now I know why I have seen moms pushing strollers in the street. Luckily it isn't too far from our house to a trail that, which with the exception of the very first part, is pretty smooth.
The comeback will be slow but it was begun! Plus, with the stress of Megatron's surgery, hospital stay and recovery, I need to keep getting out there to attempt to stay sane. I'll let you know how that goes.
There is a big learning curve for me though. One, I feel like I'm starting from scratch. As in, back in 2004 when I walked my first mile to train for a 1/2 marathon. Two, I'm pushing 40+ pounds of stroller, infant seat and infant. Three, I'm still carrying about 8 extra pounds of my own weight. I realize that is pretty good for only 8 weeks post-partem but it certainly changes my gait. That's not even considering the other physical changes to my hips and all that jazz.
I'm going to have to get used to pushing the stroller because when The Pilot is away, I can't just not work out. Megatron best get used to the BOB too! Since I have to obviously use at least one hand to push the stroller, I can't get into a the proper race walk form (or run for that matter). I tried to push with one hand and walking to the side of the stroller so I could at least swing the other arm but that felt awkward and I kept kicking the tire. I think it will just take some practice and trying different things until I get the hang of it. I also discovered that the beautiful, tree-lined streets in our neighborhood make for very bumpy sidewalks. Now I know why I have seen moms pushing strollers in the street. Luckily it isn't too far from our house to a trail that, which with the exception of the very first part, is pretty smooth.
Woah, where am I?
(And for those who are safety conscious, or if our pediatrician is reading, don't worry, those car seat straps get cinched down when in motion.)
The comeback will be slow but it was begun! Plus, with the stress of Megatron's surgery, hospital stay and recovery, I need to keep getting out there to attempt to stay sane. I'll let you know how that goes.
The trail ends at an elementary school with a map of the US painted on the playground...so we left Megatron in Texas for a quick visit.
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