Thursday, February 24, 2011
A Year of Lemonade
Another Birthday to celebrate! Today my little blog is a year old. One great year of highs and lows, and it's been so much fun sharing it here. I hope the picture that others see when they look at our life is a rich, happy, ever-changing mosaic of a real family living life the best way we know how. We have good days and bad days, and I hope I've shown that...It's not always easy, but it's real and it's amazing. Our lemons made the best tasting stuff I've ever had. Thank you for sharing the lemonade with us!
Friday, February 18, 2011
Happy Birthday Shunt
I can't believe it's been a year. One year since I wrote Shunt Happens. One perfectly uneventful year...in the life of a shunt. You see, while so many important things have happened this year, it's sometimes easy to overlook what has not happened. We have not made any trips to the ER. None. We have not made frantic phone calls to the pediatrician. We have not had any heartbreaking MRI results. We have not had any shunt revisions. Thank you God...
Today is a big day. One year ago today Madison had surgery to place a shunt in her brain...And here I am, a year later, feeling so completely overwhelmed with gratitude for what it meant that day, and what it continues to mean every day from now on.
Don't get me wrong....I did not want this. at. all. I fought it as hard as any Mama out there. When you find out your baby will have spina bifida, you also learn that there's a 85% chance that they will need a shunt. I held on to that 15% with everything I had. I prayed against it daily. I knew that a shunt is a very fickle thing. For some kids it works perfectly for years and years. For others it is a constant source of stress. Shunts can act up. Each time a shunt malfunctions it means more tests, more surgeries, and more hospital time. I wanted Maddie to be in the 15% that would never need one. I thought we would be. We were told that if we made it to a year without a shunt, it was 90% likely she would not need one. I held on to that. Around 7 months Maddie's head measurements took a dissapointing jog away from the normal curve. The fluid was increasing the size of her ventricles, and putting too much pressure on the brain. We knew it was a a losing battle. She had her shunt surgery at 8 months old. I was crushed. Just knowing this "thing" would be in my baby girl's head for the rest of her life was heartbreaking. And the constant worry that something might be wrong is an ever present reality to a parent dealing with a shunt. Every fever, every nap that goes too long, every upset stomach leaves you to wonder...Could it be? On this day, a year ago, I was filled with worry, fear, and anger at once again being on the wrong side of statistics. But today, all I feel is gratitude. This shunt has saved Maddie's life. It made it possible for her to continue to thrive and progress, and she would not be who she is today without it.
There are many others out there facing procedures for their little ones, that they have fought equally hard against...and my heart goes out to them. No one wants these things for their kids. But at the end of the day, if they need it, you want them to have it. You want whatever it takes to keep your baby healthy...be it a shunt, a trach, caths, braces...whatever. Once you get past the idea of this "thing" being the enemy, you will find yourself so grateful for what it means for your child. It means life. It means the ability to thrive and grow. I know I will continue to have a love/hate relationship with this shunt, but that's ok. I love when it does what it's supposed to, and I hate the idea that one day it may not. But for today, I am thankful and happy to celebrate the first of many years with a perfectly working shunt. Happy Birthday, and here's to many more!
Today is a big day. One year ago today Madison had surgery to place a shunt in her brain...And here I am, a year later, feeling so completely overwhelmed with gratitude for what it meant that day, and what it continues to mean every day from now on.
Don't get me wrong....I did not want this. at. all. I fought it as hard as any Mama out there. When you find out your baby will have spina bifida, you also learn that there's a 85% chance that they will need a shunt. I held on to that 15% with everything I had. I prayed against it daily. I knew that a shunt is a very fickle thing. For some kids it works perfectly for years and years. For others it is a constant source of stress. Shunts can act up. Each time a shunt malfunctions it means more tests, more surgeries, and more hospital time. I wanted Maddie to be in the 15% that would never need one. I thought we would be. We were told that if we made it to a year without a shunt, it was 90% likely she would not need one. I held on to that. Around 7 months Maddie's head measurements took a dissapointing jog away from the normal curve. The fluid was increasing the size of her ventricles, and putting too much pressure on the brain. We knew it was a a losing battle. She had her shunt surgery at 8 months old. I was crushed. Just knowing this "thing" would be in my baby girl's head for the rest of her life was heartbreaking. And the constant worry that something might be wrong is an ever present reality to a parent dealing with a shunt. Every fever, every nap that goes too long, every upset stomach leaves you to wonder...Could it be? On this day, a year ago, I was filled with worry, fear, and anger at once again being on the wrong side of statistics. But today, all I feel is gratitude. This shunt has saved Maddie's life. It made it possible for her to continue to thrive and progress, and she would not be who she is today without it.
There are many others out there facing procedures for their little ones, that they have fought equally hard against...and my heart goes out to them. No one wants these things for their kids. But at the end of the day, if they need it, you want them to have it. You want whatever it takes to keep your baby healthy...be it a shunt, a trach, caths, braces...whatever. Once you get past the idea of this "thing" being the enemy, you will find yourself so grateful for what it means for your child. It means life. It means the ability to thrive and grow. I know I will continue to have a love/hate relationship with this shunt, but that's ok. I love when it does what it's supposed to, and I hate the idea that one day it may not. But for today, I am thankful and happy to celebrate the first of many years with a perfectly working shunt. Happy Birthday, and here's to many more!
Friday, February 11, 2011
The Good, The Bad, and The Bertha
The Good
So most of you know that we participated in the MOMS trial, which has just recently ended. For those of you who don't, here is the back story...
At 24 weeks, we found out that Madison would have SB. We were quickly sent to Philadelphia to be evaluated for a clinical trial called MOMS. It was trying to determine if SB babies did better after having their opening closed in-utero, versus the traditional approach of closure surgery shortly after birth. There were two groups, and participants were randomly selected for either group. We were accepted into the trial, and randomized into the postnatal group. This meant we returned home until 37 weeks, and then went back to Philly for the delivery and surgery. I had mixed feelings at the time. I wanted to do what was best for Maddie, but I couldn't stand the thought of being away from Mason for months on end. So I was a little relieved when we were told postnatal. I felt it was the best of both worlds...I got to go home and continue with a somewhat normal pregnancy, and I still had the benefit of the most amazing doctors and facilities on our team for the birth and care afterwards. I was at peace with the decision.
This week the results of the trial were made public. There has been lots of press on it, and it has caused alot of mixed emotions among the SB community, and for me, personally. It's hard to watch a clip of a kid playing basketball, showing no signs of SB, and hear them attribute it all to the fetal surgery. It causes people to assume he's been "fixed". And that is not true. On the other hand, it's also not safe to assume that kids who did not have the surgery, will automatically fare worse than the others. Each child is unique, in every way imaginable...And I hope all this new attention doesn't try to define each child, and determine their abilities and inabilities just based on which group they are in. Maddie is doing some pretty remarkable things while representing the postnatal group, and I am still at peace with our decision. (for those reading this on facebook click here)
I know that we were meant to be in the postnatal group. I know that I did all I could to give Madison the best possible chance. I know that I walked through every door that was opened to me, and I know that the doors that remained closed, were closed for a reason. I have no regrets about joining the trial, and I feel incredibly fortunate to have been given the opportunity. It is so exciting to think of the developments that will come from this trial...the possibilities are endless. And even if the media coverage is a little off base, only good can come from all the publicity and awareness that the press brings. An SB diagnoses today, is not what is was yesterday...and that is a good thing.
The Bad
Quarantined. That's how I feel. We are all sick, and it's been almost a month since we were all healthy. It started with Mason. He came home with a cough one day in January. I decided to keep him home because he looked terrible, and the cough and congestion were pretty nasty. The principal called to let me know half of his class was home as well, and some had tested positive for RSV. Great. So he stayed in, got better, and finally went back. A day later he was sick again. SO he stayed home for another week...He's finally on the mend, but now Chris and I are sick...which of course is a bad thing. A 4-yr old who's been couped up, and finally feeling better is no match for 2 parents just coming down with it. And then last night, Maddie started coughing. Ugh. She has sounded ok today, but still coughing a little more than I'd like...so we will see. Chris is passed out on the sofa, I'm chugging cough syrup, and we are rationing out the last of the chicken soup...Should be an awesome Valentines weekend.
The Bertha
While bathing Maddie on Wednesday night, I noticed an area on her right tush, just below the hips that appeared to be swollen, and jutting out. I'm not gonna lie...I was freaked out. Enough to call Chris in to examine it with me...Enough to take pics and email them to our PT...Enough to post those pics on an online SB support forum. Yikes. So the pics went out, and the answers started rolling in. Possible CSF leak, fluid-filled cyst, shunt malfunction, scar tissue. I was a nervous wreck. So the next morning we had PT. Michele looked at the spot, and determined it wasn't anything with her hips or an injury, but she thought it would be good for our neuro to take a look at it as well. Luckily, we had a neuro follow up later that day. So we prepared ourselves for the possibility of an MRI, and further examination. Neuro took one look at it, felt it, and announced, "Looks like she's a chunker!" HUH?! Official diagnoses: "funky fat deposit." I named it Bertha. So here I was, just a few days after saying I would be exhaling more, holding my breath over a "funky fat deposit"....Sheesh. Live and learn...and when I feel the need to overreact again, I'll just check in with Bertha.
So most of you know that we participated in the MOMS trial, which has just recently ended. For those of you who don't, here is the back story...
At 24 weeks, we found out that Madison would have SB. We were quickly sent to Philadelphia to be evaluated for a clinical trial called MOMS. It was trying to determine if SB babies did better after having their opening closed in-utero, versus the traditional approach of closure surgery shortly after birth. There were two groups, and participants were randomly selected for either group. We were accepted into the trial, and randomized into the postnatal group. This meant we returned home until 37 weeks, and then went back to Philly for the delivery and surgery. I had mixed feelings at the time. I wanted to do what was best for Maddie, but I couldn't stand the thought of being away from Mason for months on end. So I was a little relieved when we were told postnatal. I felt it was the best of both worlds...I got to go home and continue with a somewhat normal pregnancy, and I still had the benefit of the most amazing doctors and facilities on our team for the birth and care afterwards. I was at peace with the decision.
This week the results of the trial were made public. There has been lots of press on it, and it has caused alot of mixed emotions among the SB community, and for me, personally. It's hard to watch a clip of a kid playing basketball, showing no signs of SB, and hear them attribute it all to the fetal surgery. It causes people to assume he's been "fixed". And that is not true. On the other hand, it's also not safe to assume that kids who did not have the surgery, will automatically fare worse than the others. Each child is unique, in every way imaginable...And I hope all this new attention doesn't try to define each child, and determine their abilities and inabilities just based on which group they are in. Maddie is doing some pretty remarkable things while representing the postnatal group, and I am still at peace with our decision. (for those reading this on facebook click here)
I know that we were meant to be in the postnatal group. I know that I did all I could to give Madison the best possible chance. I know that I walked through every door that was opened to me, and I know that the doors that remained closed, were closed for a reason. I have no regrets about joining the trial, and I feel incredibly fortunate to have been given the opportunity. It is so exciting to think of the developments that will come from this trial...the possibilities are endless. And even if the media coverage is a little off base, only good can come from all the publicity and awareness that the press brings. An SB diagnoses today, is not what is was yesterday...and that is a good thing.
The Bad
Quarantined. That's how I feel. We are all sick, and it's been almost a month since we were all healthy. It started with Mason. He came home with a cough one day in January. I decided to keep him home because he looked terrible, and the cough and congestion were pretty nasty. The principal called to let me know half of his class was home as well, and some had tested positive for RSV. Great. So he stayed in, got better, and finally went back. A day later he was sick again. SO he stayed home for another week...He's finally on the mend, but now Chris and I are sick...which of course is a bad thing. A 4-yr old who's been couped up, and finally feeling better is no match for 2 parents just coming down with it. And then last night, Maddie started coughing. Ugh. She has sounded ok today, but still coughing a little more than I'd like...so we will see. Chris is passed out on the sofa, I'm chugging cough syrup, and we are rationing out the last of the chicken soup...Should be an awesome Valentines weekend.
The Bertha
While bathing Maddie on Wednesday night, I noticed an area on her right tush, just below the hips that appeared to be swollen, and jutting out. I'm not gonna lie...I was freaked out. Enough to call Chris in to examine it with me...Enough to take pics and email them to our PT...Enough to post those pics on an online SB support forum. Yikes. So the pics went out, and the answers started rolling in. Possible CSF leak, fluid-filled cyst, shunt malfunction, scar tissue. I was a nervous wreck. So the next morning we had PT. Michele looked at the spot, and determined it wasn't anything with her hips or an injury, but she thought it would be good for our neuro to take a look at it as well. Luckily, we had a neuro follow up later that day. So we prepared ourselves for the possibility of an MRI, and further examination. Neuro took one look at it, felt it, and announced, "Looks like she's a chunker!" HUH?! Official diagnoses: "funky fat deposit." I named it Bertha. So here I was, just a few days after saying I would be exhaling more, holding my breath over a "funky fat deposit"....Sheesh. Live and learn...and when I feel the need to overreact again, I'll just check in with Bertha.
Monday, February 7, 2011
Exhale
Do you ever get so caught up in a task that you forget to breathe? Something that requires complete focus and concentration, and the slightest distraction could be disaster. I do this all the time. From decorating a cake and parallel parking, to a serious game of jenga...I could easily pass out if I give it too much thought.
Yesterday I read another blog, one of my favorites, and the post asked readers to find a single word that best describes how you plan to approach this new year. Taking all that you learned from 2010, and using it to redefine 2011...In one word. I love this kind of stuff because it really makes you think. And I did. I took stock of all that happened last year, and re-evaluated where I am today... All the growth, all the setbacks, the frustrations, the highs, the lows, the laughter, the tears...all of it...and my word was "exhale."
I realize that I spent most of last year holding my breath, in fear of what the future would bring. I worried about everything..from milestones and shunts, to preschool and everything in between. And the one thing that I learned from 2010 is that my worry doesn't change a thing. Life is gonna happen whether I stress about it or not. So why not breathe, already? If I could tell new Moms, going through that first year, one thing it would be " just breathe." And that's good advice for anyone. We spend so much energy worrying about jobs, finances, relationships, and health issues. We let ourselves get so caught up in things that are out of our control, that we suddenly realize we've been holding our breath for a year, just waiting for our fears to become reality. I heard a quote once that said it best..."Don't let your fears of tomorrow steal your joys of today."
This year I plan to exhale more. I want to breathe in all of the beauty and wonder that life holds, and release all of the fear and uncertainty. I don't want to be so completely focused on the details that I miss the big picture.
Will I still stress? Of course. Will I still get a knot in my stomach when something doesn't feel right. Yep. But I hope that I can recognize those moments for what they are, and move past them. I hope that I can continue to move forward, instead of becoming paralyzed with fear. And I hope that I always remember that with the rain comes new life, and the ability to grow.
Yesterday I read another blog, one of my favorites, and the post asked readers to find a single word that best describes how you plan to approach this new year. Taking all that you learned from 2010, and using it to redefine 2011...In one word. I love this kind of stuff because it really makes you think. And I did. I took stock of all that happened last year, and re-evaluated where I am today... All the growth, all the setbacks, the frustrations, the highs, the lows, the laughter, the tears...all of it...and my word was "exhale."
I realize that I spent most of last year holding my breath, in fear of what the future would bring. I worried about everything..from milestones and shunts, to preschool and everything in between. And the one thing that I learned from 2010 is that my worry doesn't change a thing. Life is gonna happen whether I stress about it or not. So why not breathe, already? If I could tell new Moms, going through that first year, one thing it would be " just breathe." And that's good advice for anyone. We spend so much energy worrying about jobs, finances, relationships, and health issues. We let ourselves get so caught up in things that are out of our control, that we suddenly realize we've been holding our breath for a year, just waiting for our fears to become reality. I heard a quote once that said it best..."Don't let your fears of tomorrow steal your joys of today."
This year I plan to exhale more. I want to breathe in all of the beauty and wonder that life holds, and release all of the fear and uncertainty. I don't want to be so completely focused on the details that I miss the big picture.
Will I still stress? Of course. Will I still get a knot in my stomach when something doesn't feel right. Yep. But I hope that I can recognize those moments for what they are, and move past them. I hope that I can continue to move forward, instead of becoming paralyzed with fear. And I hope that I always remember that with the rain comes new life, and the ability to grow.
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