I mostly manage to stay positive but I do have my bad days. Today was a bad day. She had been off oxygen entirely for 24 whole hours and doing well with pulse ox in the upper 80's to mid 90's. But when I arrived tonight she was back on oxygen because she was still working too hard to get there and they don't want anything to interfere with her swallow study. They also reduced her breathing treatments at the same time, which may be a double whammy instead of a quadruple like the other day, but it was still enough to keep her from kicking her O2 habit. Progress is slow at this point, but it is still progress.
If she didn't need a swallow study she would probably be home already on portable oxygen, but it is too important that we get a proper diagnosis and plan to prevent future problems. Her swallow study for tomorrow was cancelled and will likely be rescheduled until next week now. They have given her Lasix to help purge out any excess fluid sneaking into her lungs to see if that helps.
My hope of having her home on Thanksgiving is drying up, but hopefully so are her lungs. I find myself irrationally upset about the fact that I missed her wearing the super cute pair of tiny pink jeans with the heart on them for the first time, and I missed her wearing socks for the first time. That and I just miss her. I'm missing out on the majority of 3 weeks of her young life so far and that really sucks.
And now my husband is worried he might be sick and so we are on full alert getting alternative care for Vivek set up and deciding if one or both of us should take off work. We are also having to resterilize what has been touched by him in our house, though my husband is wearing latex gloves to help reduce any contamination.
Stop the ride I want off.
However, despite having a bad day I am cognizant that the greatest gift all this has given me is perspective. Positivity is definitely a state that must be maintained by keeping perspective on the bigger picture, which is easier in some situations and on some days than others. And there are times you will fail dismally at it, but that is okay as long as you pick yourself back up. I keep perspective in a lot of ways, but the long and short of it is knowing "...it could be worse."
"It could be worse..." works most of the time. It even works for the people that I've read on other blogs who are in situations so bad with their preemies that they are my "worse." But they have been around the NICU block long enough to see folks even worse off than they are. Instead of "why me" they are thinking "why them?"
But as one of my favorite bloggers points out, "Your cancer does not heal my broken back." http://www.jennepper.com/2011/11/my-big-fat-nicu-experience.html You can maintain a positive outlook and keep things in perspective and still have a crappy day and complain about how something sucks.
Bernadette from Rasta Less Traveled writes a very eloquent piece about the gift of perspective that such an experience gives you here: http://www.rastalesstraveled.com/2012/10/a-broken-hot-water-heater-sort-of-day.html
Some folks write gratitude journals. Back when I worked suicide hotlines that always kept me in a positive place. Right now I read stories and blogs of preemie parents who have been through so much more than I have and it keeps me inspired.
There exist what I like to call "Sub-Clubs." I have my gold membership from The Infertiles Club for putting in 8 years, and folks like me don't want to listen to moaning and groaning from part-timers who only spent a year trying then had a successful first IVF attempt that was covered by their insurance.
But the truth is that I am in a sub-club of infertiles. I am friends with a woman with my same disease who lost her uterus because her endometriosis was so debilitating and was spreading up into her upper torso and lungs, and she spent over a year on the couch recovering. I met a woman in India who had IVF at a top clinic in London and they ruptured an artery and she stroked out and almost died on the table. It took her two years to learn to walk and talk again. And some folks have spent twice as long as I have suffering from infertility, and many of them endured it far more gracefully than I ever managed to. I wish I had followed their blogs back then and perhaps I would have managed a little easier, but I didn't really know what a blog was I'm ashamed to say.
I have spent over 3 months with one or both babies in the NICU. But there exists a sub-club of NICU short timers. Watching some of these "woe is me" 2 weekers with their giant 6 pound preemies born at 35 weeks moping around like their world is caving in on them is just annoying. Some of them whine about getting cheated out of their "birth plan" and how they didn't get to see their baby right after it was born. Me...I had to wait a week and travel across the world first and never got to even carry them or feel them kick.
But I'm in a sub-club of NICU veterans too. There exist so many preemies and parents who graduated from the NICU to the PICU. They never left and never will unless it is to a specialized hospice care facility. I've read about scores of folks who had babies born heavier and later than mine gestationally with far worse problems. I met a woman in the waiting room in India who lost one twin born at 27 weeks slightly smaller than my daughter, and the other was failing to thrive. I'm sure I am annoying to them, even though I try not to be.
I remind myself just how lucky we are to still have Tara at all every single day. In over a decade at 911 I have delivered instructions for CPR hundreds of times over the phone. When you have a documented life save you earn a little lifesaver lapel pin to wear proudly. How many do I have? A big fat zero. It's not because I'm not super awesome at giving CPR instructions over the phone. It's because CPR is only successful about 6% of the time without an AED (defibrillator/shock box) and 95% of the folks rescusitated die on the way to the hospital. So many of the folks that called me over the years simply found their loved one too late but had no way of knowing how long it had been and that there was no chance of saving them.
Out of the hundreds of times I've told someone how to give CPR and I have no saves that we know of, but the one time I actually do CPR it's on my own child and she survives. If that doesn't keep things in perspective I don't know what can.
I'm grateful that my daughter is so well taken care of when I'm not there. She is in a top notch NICU and not only does she get great medical care, she gets a nurse dedicated only to her care who will hold her for hours and love on her when she cries.
I'm grateful my son is as healthy as he is and can shake the walls with his mighty little lungs screaming at me to hurry up with that bottle.
I'm grateful that this experience has taught me just how much having preset expectations is a recipe for unhappiness, and enjoying things the way they are and letting life surprise you is a much better way to live.
I'm grateful that I'm better now at quickly changing my plan midstream when it doesn't seem to be working out the way I'd hoped. I'm starting to think my children are going to teach me far more than I teach them.
I'm grateful that I'm able to provide everything that my babies need to thrive, and am not hanging my diaperless baby from a makeshift hammock made out of a burlap sack on a tree by a highway underpass in Gujarat as I beg for change from passersby.
So in short, this Thanksgiving I'm going to be far more thankful than I've ever been...even if one little turkey is missing at the table.
If she didn't need a swallow study she would probably be home already on portable oxygen, but it is too important that we get a proper diagnosis and plan to prevent future problems. Her swallow study for tomorrow was cancelled and will likely be rescheduled until next week now. They have given her Lasix to help purge out any excess fluid sneaking into her lungs to see if that helps.
My hope of having her home on Thanksgiving is drying up, but hopefully so are her lungs. I find myself irrationally upset about the fact that I missed her wearing the super cute pair of tiny pink jeans with the heart on them for the first time, and I missed her wearing socks for the first time. That and I just miss her. I'm missing out on the majority of 3 weeks of her young life so far and that really sucks.
And now my husband is worried he might be sick and so we are on full alert getting alternative care for Vivek set up and deciding if one or both of us should take off work. We are also having to resterilize what has been touched by him in our house, though my husband is wearing latex gloves to help reduce any contamination.
Stop the ride I want off.
However, despite having a bad day I am cognizant that the greatest gift all this has given me is perspective. Positivity is definitely a state that must be maintained by keeping perspective on the bigger picture, which is easier in some situations and on some days than others. And there are times you will fail dismally at it, but that is okay as long as you pick yourself back up. I keep perspective in a lot of ways, but the long and short of it is knowing "...it could be worse."
"It could be worse..." works most of the time. It even works for the people that I've read on other blogs who are in situations so bad with their preemies that they are my "worse." But they have been around the NICU block long enough to see folks even worse off than they are. Instead of "why me" they are thinking "why them?"
But as one of my favorite bloggers points out, "Your cancer does not heal my broken back." http://www.jennepper.com/2011/11/my-big-fat-nicu-experience.html You can maintain a positive outlook and keep things in perspective and still have a crappy day and complain about how something sucks.
Bernadette from Rasta Less Traveled writes a very eloquent piece about the gift of perspective that such an experience gives you here: http://www.rastalesstraveled.com/2012/10/a-broken-hot-water-heater-sort-of-day.html
Some folks write gratitude journals. Back when I worked suicide hotlines that always kept me in a positive place. Right now I read stories and blogs of preemie parents who have been through so much more than I have and it keeps me inspired.
There exist what I like to call "Sub-Clubs." I have my gold membership from The Infertiles Club for putting in 8 years, and folks like me don't want to listen to moaning and groaning from part-timers who only spent a year trying then had a successful first IVF attempt that was covered by their insurance.
But the truth is that I am in a sub-club of infertiles. I am friends with a woman with my same disease who lost her uterus because her endometriosis was so debilitating and was spreading up into her upper torso and lungs, and she spent over a year on the couch recovering. I met a woman in India who had IVF at a top clinic in London and they ruptured an artery and she stroked out and almost died on the table. It took her two years to learn to walk and talk again. And some folks have spent twice as long as I have suffering from infertility, and many of them endured it far more gracefully than I ever managed to. I wish I had followed their blogs back then and perhaps I would have managed a little easier, but I didn't really know what a blog was I'm ashamed to say.
I have spent over 3 months with one or both babies in the NICU. But there exists a sub-club of NICU short timers. Watching some of these "woe is me" 2 weekers with their giant 6 pound preemies born at 35 weeks moping around like their world is caving in on them is just annoying. Some of them whine about getting cheated out of their "birth plan" and how they didn't get to see their baby right after it was born. Me...I had to wait a week and travel across the world first and never got to even carry them or feel them kick.
But I'm in a sub-club of NICU veterans too. There exist so many preemies and parents who graduated from the NICU to the PICU. They never left and never will unless it is to a specialized hospice care facility. I've read about scores of folks who had babies born heavier and later than mine gestationally with far worse problems. I met a woman in the waiting room in India who lost one twin born at 27 weeks slightly smaller than my daughter, and the other was failing to thrive. I'm sure I am annoying to them, even though I try not to be.
I remind myself just how lucky we are to still have Tara at all every single day. In over a decade at 911 I have delivered instructions for CPR hundreds of times over the phone. When you have a documented life save you earn a little lifesaver lapel pin to wear proudly. How many do I have? A big fat zero. It's not because I'm not super awesome at giving CPR instructions over the phone. It's because CPR is only successful about 6% of the time without an AED (defibrillator/shock box) and 95% of the folks rescusitated die on the way to the hospital. So many of the folks that called me over the years simply found their loved one too late but had no way of knowing how long it had been and that there was no chance of saving them.
Out of the hundreds of times I've told someone how to give CPR and I have no saves that we know of, but the one time I actually do CPR it's on my own child and she survives. If that doesn't keep things in perspective I don't know what can.
I'm grateful that my daughter is so well taken care of when I'm not there. She is in a top notch NICU and not only does she get great medical care, she gets a nurse dedicated only to her care who will hold her for hours and love on her when she cries.
I'm grateful my son is as healthy as he is and can shake the walls with his mighty little lungs screaming at me to hurry up with that bottle.
I'm grateful that this experience has taught me just how much having preset expectations is a recipe for unhappiness, and enjoying things the way they are and letting life surprise you is a much better way to live.
I'm grateful that I'm better now at quickly changing my plan midstream when it doesn't seem to be working out the way I'd hoped. I'm starting to think my children are going to teach me far more than I teach them.
I'm grateful that I'm able to provide everything that my babies need to thrive, and am not hanging my diaperless baby from a makeshift hammock made out of a burlap sack on a tree by a highway underpass in Gujarat as I beg for change from passersby.
So in short, this Thanksgiving I'm going to be far more thankful than I've ever been...even if one little turkey is missing at the table.
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