Music is powerful. Babies love it. It keeps them calm. It helps them grow. It heals. To help her concentrate on that, her nurses have given her a gift in the form of some of the best therapy imaginable. A CD player at her bedside, the pleasures of melodies to help her ease thru the hours. Little Bird loves music. I think it takes her mind off of the worry of what's next. It definitely soothes her enough to help her sleep, this I've seen for myself.
Over the course of the past few weeks, I've been gathering a list of songs for her. Especially for her. Songs that will help her rest. Help her rejuvenate. Help her recover. Little lullabies to let her know how much I love her. There are so many. And many more that I've likely never heard myself. And this is where you all come in.
Team Little Bird, I need your help! Can you assist me in identifying with some of the music that you listen you? Nothing is off limits (well, except for heavy metal. I'm thinking her nervous system may not be able to appreciate Marilyn Manson or the like just yet). Pop. Rock. Rap. Soul. Country. R&B. You name it. So long as it is acceptable to play in a NICU setting, it shall be added to the collection of discs that I'm making for her. Suggested songs that make it onto her playlists will also be tagged with the names of the people who recommend them for her. Just a little something for her to recognize one day when she's old enough to.
Any and all ideas that you would like to share can posted below as a comment, passed along on Facebook, or emailed to me at rachaelsanko@gmail.com. If you can help me out with this little project, it would mean so much. I value your advice and taste, and look forward to any suggestions you might have!
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Sunday, October 30, 2011
Monday, October 24, 2011
You Never Know What You Never Know....
Since the end of August, I've been walking around with such an psychologically enormous weight on my conscience. They wanted us to consent to giving Little Bird dexamethasone in an attempt to permanently extubate her from the ventilator. After looking into this drug, something didn't feel right to me. I couldn't say yes. Even though they were telling me that without it, she would surely need a tracheotomy and end up coming home on the machine. Even though I knew she had developed BPD, her lungs becoming more damaged with each passing day. When I researched the pros and cons for myself, it was the long term affects that scared me. One article in particular, albeit outdated, stated that there was enough evidence to show that the medication causes the brain tissue to shrink. I've said it a thousand times, Little Bird's quality of life must also be considered.
I don't think an hour has gone by, between then and now, that I haven't spent second guessing that choice. Especially over the course of the past two weeks. It absolutely killed me to know that a surgeon would hold her life in his hands during an operation that I might have been able to prevent. I asked everyone I knew what they would do in this position. Parents of preemies. Relatives. Friends. Medical professionals. The mail man. All anyone could say was "Do what you feel is best for your baby". But I still wasn't a hundred percent at ease that I did. I came very, very close to changing my mind, but still, I just couldn't. I don't know why.
And then, a few days ago, God (perhaps?) told me, directly, that I did right by her. Well, God, and MSNBC news. I logged on to the internet to find out what was happening in the rest of the world, when I came across this headline: http://www.msnbc.msn.com/id/44963638/ns/health-childrens_health/#.Tp9KjXKWRkg I still don't understand what it was that made me refuse that treatment. Maybe the voices in my head aren't as crazy as they sound sometimes. I know this is far from over, and I know I don't get the final say. But now I also know, beyond the shadow of any doubt, that I made the right decision for Little Bird.
One of the most difficult aspects of this experience has been those proverbial forks in the road in regards to her medical care. What would she want? What if we lead her down the wrong path? There is no turning back. Today, we were faced with another one. The good news is that for the second time in as many weeks, the words "coming home" were mentioned, making the idea of it that much more real. But, the bad news is that she may have to undergo another procedure before she does. Over the weekend, we discussed the fact that she will not be bottle fed for quite some time because of the trach, and will be discharged with a feeding tube. The issue lies with what type of tube it will be. Right now, she requires a nasogastric piece, which she's had no problems with. However, one of the doctors on staff feels that a PEG might be in order because ventilated babies tend to lose weight. So far, she's been continuously gaining. But the concern is also that as of today, she's been switched from a high calorie formula to that of lower amount, and they anticipate that she might lose something because of this.
I know a few people who's babies currently utilize this type of therapy, and are doing pretty well with it. But the thought of another surgery on her, for any reason, doesn't sit well with me. Considering how premature she was, and all of the obstacles she's already stared down? With the exception of the tracheotomy, we've managed to avoid the operating room throughout a situation that just about guaranteed we wouldn't. Maybe time will be kind to her once again, and give her a chance to prove western medicine wrong. Shall it be door number one? Or door number two?
In the meantime, we may have come up with an idea that could cut a few weeks off of her hospital stay. We've also been speaking with the staff about Little Bird's upcoming step-down transfer to a closer facility, which will be the previous unit she was in. It occurred to me that we have a relative who is a respiratory technician. He works with the only company in our area that offers home based care for mechanically dependent patients, and he lives ten minutes away from us. We don't know if this will even be possible, but we're hoping that we can arrange to complete the vent training with them (more specifically him) if the hospital will allow for it. It certainly can't hurt to ask.
Either way, we're getting closer to that day when she might finally be released. Number Five overheard MFH and I talking about it this afternoon, and she is soooo excited. She has big plans for her little sister. Plans that include sharing her Halloween candy, teaching her how to jump up and down on her bed, and a very colorful bubble bath. The rest of us have a lot of work to do before that day comes. Our family is about to undergo an entire lifestyle change. We will be prepared. We can do this.
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I don't think an hour has gone by, between then and now, that I haven't spent second guessing that choice. Especially over the course of the past two weeks. It absolutely killed me to know that a surgeon would hold her life in his hands during an operation that I might have been able to prevent. I asked everyone I knew what they would do in this position. Parents of preemies. Relatives. Friends. Medical professionals. The mail man. All anyone could say was "Do what you feel is best for your baby". But I still wasn't a hundred percent at ease that I did. I came very, very close to changing my mind, but still, I just couldn't. I don't know why.
And then, a few days ago, God (perhaps?) told me, directly, that I did right by her. Well, God, and MSNBC news. I logged on to the internet to find out what was happening in the rest of the world, when I came across this headline: http://www.msnbc.msn.com/id/44963638/ns/health-childrens_health/#.Tp9KjXKWRkg I still don't understand what it was that made me refuse that treatment. Maybe the voices in my head aren't as crazy as they sound sometimes. I know this is far from over, and I know I don't get the final say. But now I also know, beyond the shadow of any doubt, that I made the right decision for Little Bird.
One of the most difficult aspects of this experience has been those proverbial forks in the road in regards to her medical care. What would she want? What if we lead her down the wrong path? There is no turning back. Today, we were faced with another one. The good news is that for the second time in as many weeks, the words "coming home" were mentioned, making the idea of it that much more real. But, the bad news is that she may have to undergo another procedure before she does. Over the weekend, we discussed the fact that she will not be bottle fed for quite some time because of the trach, and will be discharged with a feeding tube. The issue lies with what type of tube it will be. Right now, she requires a nasogastric piece, which she's had no problems with. However, one of the doctors on staff feels that a PEG might be in order because ventilated babies tend to lose weight. So far, she's been continuously gaining. But the concern is also that as of today, she's been switched from a high calorie formula to that of lower amount, and they anticipate that she might lose something because of this.
I know a few people who's babies currently utilize this type of therapy, and are doing pretty well with it. But the thought of another surgery on her, for any reason, doesn't sit well with me. Considering how premature she was, and all of the obstacles she's already stared down? With the exception of the tracheotomy, we've managed to avoid the operating room throughout a situation that just about guaranteed we wouldn't. Maybe time will be kind to her once again, and give her a chance to prove western medicine wrong. Shall it be door number one? Or door number two?
In the meantime, we may have come up with an idea that could cut a few weeks off of her hospital stay. We've also been speaking with the staff about Little Bird's upcoming step-down transfer to a closer facility, which will be the previous unit she was in. It occurred to me that we have a relative who is a respiratory technician. He works with the only company in our area that offers home based care for mechanically dependent patients, and he lives ten minutes away from us. We don't know if this will even be possible, but we're hoping that we can arrange to complete the vent training with them (more specifically him) if the hospital will allow for it. It certainly can't hurt to ask.
Either way, we're getting closer to that day when she might finally be released. Number Five overheard MFH and I talking about it this afternoon, and she is soooo excited. She has big plans for her little sister. Plans that include sharing her Halloween candy, teaching her how to jump up and down on her bed, and a very colorful bubble bath. The rest of us have a lot of work to do before that day comes. Our family is about to undergo an entire lifestyle change. We will be prepared. We can do this.
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"Would You Like To Hold Your Daughter?".....
In the instant that Little Bird's nurse said those nine little words, I froze. Rendered completely speechless for what seemed like an eternity. MFH spoke up and declared, "Yes!". I'm still not sure if that was his reply to her question, or a release of the emotion of the moment. Before I could utter a syllable, a respiratory technician appeared out of nowhere. No, really. I now refer to her specifically as "Our Fairy Godmother", because I still don't know where she came from, yet so quickly. Both Ladies began to explain to Little Bird what they were doing, as they were doing it. I sat down in the rocking chair and watched with amazement as they so seamlessly orchestrated what surely should have been a very complicated maneuver. So many tubes and wires, all precisely positioned without skipping a beat. And suddenly, there we were.
Both of us nervous, we studied each other for the longest time. Me, because I was certain she was going to cry, unable to recognize me. Her, because she likely thought she was going to be poked with another needle, another procedure. I didn't want her to feel afraid, so I kissed her. Again, and again, and again. Each one even sweeter than the last. I smelled her. Her essence, not of iodine or antibacterial anything, but of life. She smells brand new. Just like heaven. One breathe absolved all of the heartache and worry of the last three and a half months.
She didn't cry. In fact, she stayed awake and alert the entire time. It's believed that the eyes are the doorway into a person's soul. If that's true, hers is flawless. And very, very old. She's been here before, I know she has. Something about the way she looked at me seemed incredibly familiar. Two deep blue pools that are absolutely mesmerizing. She did try her best to distract me from noticing her attempt to free her hands from the swaddle of her blankets. And she is very strong, more than you would imagine a seven and a half pound baby to be. Breaking out of a triple wrap is a skill she's mastered. Convincing me that she won't pull the breathing tube out? Not so much.
For a hundred and five days, I feared that our bond was lost before it ever even got a chance to build. And when you think about it, really, what did I know about her? I knew her blood type. I knew the amount of pressure she requires on the ventilator. I knew her weight. I knew nothing more than any medical professional who has been responsible for her care during the past fifteen weeks. Or, so I thought. Everyone reassured me that we wouldn't forget. That we would be able to pick each other out of a sea of people, no matter how much time had passed. After a while, I thought they were wrong. But they weren't. I was. After a little while, she made a facial expression. I still don't understand how or why, but my instincts were right when I instantly and correctly distinguished it to mean that she wanted her binky. That might sound trivial, but for us, it was such a big deal.
The entire experience was nothing short of miraculous. As we sat there, rocking and staring, I thought about everything and everyone that led us to that day. I thought about the surgeon, who successfully inserted the trach. I thought about the hundreds of nurses, who've cared for her every single day. I thought about Dr. H., who discovered and treated the NEC and the PDA in the nick of time. I thought about everyone who ever prayed for her to get this far. And I thought about the team of paramedics who delivered her, and who gave her such a strong, fighting chance. Every single person that has touched her life. All of that effort. All of that energy. It all came together in one incredible, unforgettably beautiful moment. A magnificent butterfly effect. I will never forget it.
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Both of us nervous, we studied each other for the longest time. Me, because I was certain she was going to cry, unable to recognize me. Her, because she likely thought she was going to be poked with another needle, another procedure. I didn't want her to feel afraid, so I kissed her. Again, and again, and again. Each one even sweeter than the last. I smelled her. Her essence, not of iodine or antibacterial anything, but of life. She smells brand new. Just like heaven. One breathe absolved all of the heartache and worry of the last three and a half months.
She didn't cry. In fact, she stayed awake and alert the entire time. It's believed that the eyes are the doorway into a person's soul. If that's true, hers is flawless. And very, very old. She's been here before, I know she has. Something about the way she looked at me seemed incredibly familiar. Two deep blue pools that are absolutely mesmerizing. She did try her best to distract me from noticing her attempt to free her hands from the swaddle of her blankets. And she is very strong, more than you would imagine a seven and a half pound baby to be. Breaking out of a triple wrap is a skill she's mastered. Convincing me that she won't pull the breathing tube out? Not so much.
For a hundred and five days, I feared that our bond was lost before it ever even got a chance to build. And when you think about it, really, what did I know about her? I knew her blood type. I knew the amount of pressure she requires on the ventilator. I knew her weight. I knew nothing more than any medical professional who has been responsible for her care during the past fifteen weeks. Or, so I thought. Everyone reassured me that we wouldn't forget. That we would be able to pick each other out of a sea of people, no matter how much time had passed. After a while, I thought they were wrong. But they weren't. I was. After a little while, she made a facial expression. I still don't understand how or why, but my instincts were right when I instantly and correctly distinguished it to mean that she wanted her binky. That might sound trivial, but for us, it was such a big deal.
The entire experience was nothing short of miraculous. As we sat there, rocking and staring, I thought about everything and everyone that led us to that day. I thought about the surgeon, who successfully inserted the trach. I thought about the hundreds of nurses, who've cared for her every single day. I thought about Dr. H., who discovered and treated the NEC and the PDA in the nick of time. I thought about everyone who ever prayed for her to get this far. And I thought about the team of paramedics who delivered her, and who gave her such a strong, fighting chance. Every single person that has touched her life. All of that effort. All of that energy. It all came together in one incredible, unforgettably beautiful moment. A magnificent butterfly effect. I will never forget it.
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Sunday, October 23, 2011
Sunday, October 16, 2011
A Few Well-Placed Cameras Away From The Best Reality Show Ever....
My kids are...little hellions angels this week. But, seriously...
On Thursday morning, I awoke....wait. Let me rephrase that. MFH, the girls, and I were awakened to the sounds of what we thought was surely our house being burglarized at six o' clock in the mother fucking morning. Oh, but no. A burglar would have made sense. Much to our unpredicted guesses, we weren't mid robbery. We were mid fist fight between the three teenagers. I have no idea, to this very hour, what even caused the melee. Because nobody's saying a word. All I know is that for the rest of that day, they stayed far, far away from each other, and whenever I mentioned their little first-thing-in-the-morning-beat-down, they scattered. Could have been a girl. Could have been a pair of socks. I'll probably never know, and sometimes, I'm A-OK with that. At least this time, nothing was broken. These little random acts of violence really don't happen all that often, but the last time one did, I was down one side light door panel, a hanging planter full of basil, and one still-missing-in-action figurine that oddly enough, was the same shape and size of the hole in the window. Gee, what a coincidence...
For the first time in his life, and I can't believe it even took him this long but it did, Number Three scored his very first detention on Friday. They grow up so fast! His achievement wasn't a result of mooning the faculty. Or, for carving vulgarities into a desk. It wasn't even for starting a mass food fight in the cafeteria. See, these are the things I've come to expect, after having had raised him for the past fourteen and a half years. Believe me, I don't consider it safe to continue on with my weekdays unless I make it 'till noon without the principal or superintendent calling me. Instead, he racked up this accomplishment for talking. During the last few minutes of class. Funny, he and his two older brothers had nothing to say here at home the day before.
And, alas, there's Number Five. I am embarrassed to admit this publicly, as this family has desperately needed their help, and for real, lately. But, my name is Rachael Sanko, and my three year old has a penchant for crank calling 911. On Friday night, and for what was the third time in less than a year (and second in less than three months, but who's counting?) she managed to grab the full attention of this county's emergency dispatch service. My cell phone was plugged in and charging across the room, and she...well. I thought she was playing quietly in a pile of toys five feet away from it. When suddenly, she approached me with that oh so scared shitless look I've since become accustomed to when she knows she did bad. She handed me the device, but only after she promptly hung the fuck up on the operator who's voice I just so happened to catch as it trailed off... "What is your emergency? Hello??". Click! She knew she was facing a long stint in the miniature stoney lonesome as soon as she heard me exclaim, "Great! Now the *expletive* police are gonna be at the *expletive* door again!". She desperately searched for a good hiding place, but gave herself away when she realized the severity of my sentence, and burst into tears. "But I was only trying to call the pizza man and tell him to bring me a pizza with cheeeeese on it!". Really, now? Is my cooking that bad? Being as this was the second time she's used that very excuse to justify her crimes, I think maybe culinary classes are in order.
The next fifteen minutes were spent by MFH and I debating on whether or not we should call them back to confess her sin and pray for forgiveness, or simply pray that the fuzz wouldn't show up on our doorstep with a whopping fine for her misdeed. Number Five was so preoccupied with the thought of being sent away to a detention center that she spent that time hanging on my leg and begging for mercy via bedtime. Apparently, the cops can't come to your house if all the lights are out and you're pretending to be asleep. I'm going to plead the fifth and not divulge which plan of action we went with.
If you are a first responder, I apologize sincerely for my child being a delinquent. I promise you, it will never happen again. She got the message, loud and clear. I didn't even need to reprimand her for her actions. Her nerves were shot from scaring the shit out of herself by simply contemplating serving hard time in pint sized juvie, without the possibility of cookies or cartoons. I can pretty much guarantee that she'll be the last preteen on the planet to demand a cell phone when she's actually of age to use one. If you're a teacher, and especially one who has the daily pleasure of guiding one of my kids, I offer my condolences. The good news is, they continue to make decent grades, and with any luck they'll graduate before you retire! The bad news? There's still two more that you haven't met yet....
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On Thursday morning, I awoke....wait. Let me rephrase that. MFH, the girls, and I were awakened to the sounds of what we thought was surely our house being burglarized at six o' clock in the mother fucking morning. Oh, but no. A burglar would have made sense. Much to our unpredicted guesses, we weren't mid robbery. We were mid fist fight between the three teenagers. I have no idea, to this very hour, what even caused the melee. Because nobody's saying a word. All I know is that for the rest of that day, they stayed far, far away from each other, and whenever I mentioned their little first-thing-in-the-morning-beat-down, they scattered. Could have been a girl. Could have been a pair of socks. I'll probably never know, and sometimes, I'm A-OK with that. At least this time, nothing was broken. These little random acts of violence really don't happen all that often, but the last time one did, I was down one side light door panel, a hanging planter full of basil, and one still-missing-in-action figurine that oddly enough, was the same shape and size of the hole in the window. Gee, what a coincidence...
For the first time in his life, and I can't believe it even took him this long but it did, Number Three scored his very first detention on Friday. They grow up so fast! His achievement wasn't a result of mooning the faculty. Or, for carving vulgarities into a desk. It wasn't even for starting a mass food fight in the cafeteria. See, these are the things I've come to expect, after having had raised him for the past fourteen and a half years. Believe me, I don't consider it safe to continue on with my weekdays unless I make it 'till noon without the principal or superintendent calling me. Instead, he racked up this accomplishment for talking. During the last few minutes of class. Funny, he and his two older brothers had nothing to say here at home the day before.
And, alas, there's Number Five. I am embarrassed to admit this publicly, as this family has desperately needed their help, and for real, lately. But, my name is Rachael Sanko, and my three year old has a penchant for crank calling 911. On Friday night, and for what was the third time in less than a year (and second in less than three months, but who's counting?) she managed to grab the full attention of this county's emergency dispatch service. My cell phone was plugged in and charging across the room, and she...well. I thought she was playing quietly in a pile of toys five feet away from it. When suddenly, she approached me with that oh so scared shitless look I've since become accustomed to when she knows she did bad. She handed me the device, but only after she promptly hung the fuck up on the operator who's voice I just so happened to catch as it trailed off... "What is your emergency? Hello??". Click! She knew she was facing a long stint in the miniature stoney lonesome as soon as she heard me exclaim, "Great! Now the *expletive* police are gonna be at the *expletive* door again!". She desperately searched for a good hiding place, but gave herself away when she realized the severity of my sentence, and burst into tears. "But I was only trying to call the pizza man and tell him to bring me a pizza with cheeeeese on it!". Really, now? Is my cooking that bad? Being as this was the second time she's used that very excuse to justify her crimes, I think maybe culinary classes are in order.
The next fifteen minutes were spent by MFH and I debating on whether or not we should call them back to confess her sin and pray for forgiveness, or simply pray that the fuzz wouldn't show up on our doorstep with a whopping fine for her misdeed. Number Five was so preoccupied with the thought of being sent away to a detention center that she spent that time hanging on my leg and begging for mercy via bedtime. Apparently, the cops can't come to your house if all the lights are out and you're pretending to be asleep. I'm going to plead the fifth and not divulge which plan of action we went with.
If you are a first responder, I apologize sincerely for my child being a delinquent. I promise you, it will never happen again. She got the message, loud and clear. I didn't even need to reprimand her for her actions. Her nerves were shot from scaring the shit out of herself by simply contemplating serving hard time in pint sized juvie, without the possibility of cookies or cartoons. I can pretty much guarantee that she'll be the last preteen on the planet to demand a cell phone when she's actually of age to use one. If you're a teacher, and especially one who has the daily pleasure of guiding one of my kids, I offer my condolences. The good news is, they continue to make decent grades, and with any luck they'll graduate before you retire! The bad news? There's still two more that you haven't met yet....
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Wednesday, October 12, 2011
Tuesday, October 11, 2011
October 11th, 2011....
When I awoke this morning, as per usual, Little Bird was the first person on my mind. A thousand questions since yesterday. How was her night last night? Did she sleep well? Did they restart her feeds yet? Does she miss us? I think about everything when I think about her. But this morning, there was one realization in particular that threatened to hold me to the bed before I even had the chance to stand up.
Today would have been my anticipated due date.
I was again reminded of this when I logged into my email account to check messages. An automated send from a long forgotten website I subscribed to months ago. Congratulations! You are forty weeks pregnant! Except, we never made it that far. With everything that's transpired over the course of the past few months, I never imagined I'd even have the time to dwell on something so virtually unimportant at this point. I'm ashamed to admit that it even bothers me, though I don't know why. Only about ten percent of pregnant women ever deliver exactly on schedule. I knew that from the beginning. Still, it sucks to look back on what the last ninety four days should have been like.
I should have been driving MFH up a wall in my demands for the living room furniture to be rearranged, one more time. I should have been making everyone around me gag as they witnessed me eating some of the most disgusting food combinations to ever be craved. I should have been whining and complaining that even the ugliest of maternity apparel no longer fit. Or that heart burn and leg cramps were keeping me from getting any sleep. I should have been folding and refolding onesies and receiving blankets, and obsessively over-packing too many bags for what would have been a very brief visit on the local maternity ward. I should be second guessing the decision of a name that everyone would have cringed at, but smiled politely anyway when they heard it and said "Oh, that's cute!".
Like I said, I don't know why this bothers me so much. Especially now. We've made it this far. The past three months were the impossible, but we made it this far. She made it. And when I remind myself of that, it is a relief beyond words. Maybe it's the knowing that we will never experience it again. Almost instantly after Little Bird arrived, I knew in my head and in my heart that I would have never ventured into that pregnancy had I had any inkling that she'd have been forced to endure such a struggle for her life. And I know that I will never put another child in that position ever again.
I had complications while carrying the other kids. I've made no secret about that. But never once did the doctors who have been treating me for the last fifteen years ever once predict an outcome like this. Only one time was the topic ever mentioned, and that was during what would ultimately be my last prenatal appointment. Because of a history of surgical births, he did warn me. He said that any future pregnancies beyond Little Bird could result in uterine rupture, and that I'd likely not make it to the hospital in time to survive a possible bleed out. After having that conversation with him, I had the same one with MFH on our way home that afternoon. We both concluded that doctor knew best, and that she would be the last. Three boys, and three girls. We have our six pack, and we couldn't ask for more. That day, and just nine before she was ultimately born, we were happy just to count our blessings in the fact that we'd made it to twenty five weeks.
Believe me, I will always be grateful for that. After being hospitalized back in May, we didn't think we'd have any time with her at all. I was twenty weeks when the problems arose, well before any chance at viability. Every day beyond that was a little celebration for us. It still is. The night she was born, I laid in that hospital bed thinking "If we only get one day, it's not for nothing. She's here now, for whatever length of time that may be. We have to make the best of it, for her". And we will. But sometimes that's easier said than done.
It's so hard to ignore the facts when they're staring you in the eye. Odds. Percentages. Outcomes. I think I've reached a point where I don't want to know. Sometimes, it is better to be blind. Sometimes, ignorance really is bliss. If Little Bird is never able to jump into the pool with her siblings, we'll turn her bath times into Wild Water Kingdom. If she can't run, we'll buy her a Radio Flyer and pull her up and down the block in it, as fast she she'll allow us to. We will celebrate Thanksgiving with turkey sandwiches in the hospital cafeteria, and Christmas in the NICU as well if need be. A very good friend recently said to me, "Don't worry that she might never throw a tantrum, at least she'll be able to flip you the bird when she's pissed!". I laugh at the prospect of this, because she's right. She'll probably be the only kid on the planet who's given a free pass by her parents to get away with obscene sign language.
Tonight, she sleeps. Comfortably sedated from the pain of the tracheotomy she endured yesterday. Six pounds, eight ounces. What she should have weighed, had she been born now...
She probably won't remember any of this, and that is by far the best bright side of this whole journey. If she could make the decision herself, I think it's safe to say she wouldn't want these memories, either. I hope that by the time she is able to recollect any of it, it will be nothing more than a fuzzy dream. Maybe in enough time, the good flashbacks will outweigh the bad for us, too. I would much rather the impressions of those short lived weeks before all hell broke loose. Before the bed rest. Before anyone aside from MFH and I knew that our family was about to become a little bit bigger. Things were certainly easier then. Things were safe. She was safe. Back when we were unaware.
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Today would have been my anticipated due date.
I was again reminded of this when I logged into my email account to check messages. An automated send from a long forgotten website I subscribed to months ago. Congratulations! You are forty weeks pregnant! Except, we never made it that far. With everything that's transpired over the course of the past few months, I never imagined I'd even have the time to dwell on something so virtually unimportant at this point. I'm ashamed to admit that it even bothers me, though I don't know why. Only about ten percent of pregnant women ever deliver exactly on schedule. I knew that from the beginning. Still, it sucks to look back on what the last ninety four days should have been like.
I should have been driving MFH up a wall in my demands for the living room furniture to be rearranged, one more time. I should have been making everyone around me gag as they witnessed me eating some of the most disgusting food combinations to ever be craved. I should have been whining and complaining that even the ugliest of maternity apparel no longer fit. Or that heart burn and leg cramps were keeping me from getting any sleep. I should have been folding and refolding onesies and receiving blankets, and obsessively over-packing too many bags for what would have been a very brief visit on the local maternity ward. I should be second guessing the decision of a name that everyone would have cringed at, but smiled politely anyway when they heard it and said "Oh, that's cute!".
Like I said, I don't know why this bothers me so much. Especially now. We've made it this far. The past three months were the impossible, but we made it this far. She made it. And when I remind myself of that, it is a relief beyond words. Maybe it's the knowing that we will never experience it again. Almost instantly after Little Bird arrived, I knew in my head and in my heart that I would have never ventured into that pregnancy had I had any inkling that she'd have been forced to endure such a struggle for her life. And I know that I will never put another child in that position ever again.
I had complications while carrying the other kids. I've made no secret about that. But never once did the doctors who have been treating me for the last fifteen years ever once predict an outcome like this. Only one time was the topic ever mentioned, and that was during what would ultimately be my last prenatal appointment. Because of a history of surgical births, he did warn me. He said that any future pregnancies beyond Little Bird could result in uterine rupture, and that I'd likely not make it to the hospital in time to survive a possible bleed out. After having that conversation with him, I had the same one with MFH on our way home that afternoon. We both concluded that doctor knew best, and that she would be the last. Three boys, and three girls. We have our six pack, and we couldn't ask for more. That day, and just nine before she was ultimately born, we were happy just to count our blessings in the fact that we'd made it to twenty five weeks.
Believe me, I will always be grateful for that. After being hospitalized back in May, we didn't think we'd have any time with her at all. I was twenty weeks when the problems arose, well before any chance at viability. Every day beyond that was a little celebration for us. It still is. The night she was born, I laid in that hospital bed thinking "If we only get one day, it's not for nothing. She's here now, for whatever length of time that may be. We have to make the best of it, for her". And we will. But sometimes that's easier said than done.
It's so hard to ignore the facts when they're staring you in the eye. Odds. Percentages. Outcomes. I think I've reached a point where I don't want to know. Sometimes, it is better to be blind. Sometimes, ignorance really is bliss. If Little Bird is never able to jump into the pool with her siblings, we'll turn her bath times into Wild Water Kingdom. If she can't run, we'll buy her a Radio Flyer and pull her up and down the block in it, as fast she she'll allow us to. We will celebrate Thanksgiving with turkey sandwiches in the hospital cafeteria, and Christmas in the NICU as well if need be. A very good friend recently said to me, "Don't worry that she might never throw a tantrum, at least she'll be able to flip you the bird when she's pissed!". I laugh at the prospect of this, because she's right. She'll probably be the only kid on the planet who's given a free pass by her parents to get away with obscene sign language.
Tonight, she sleeps. Comfortably sedated from the pain of the tracheotomy she endured yesterday. Six pounds, eight ounces. What she should have weighed, had she been born now...
 |
| (These were taken before the surgery) |
She probably won't remember any of this, and that is by far the best bright side of this whole journey. If she could make the decision herself, I think it's safe to say she wouldn't want these memories, either. I hope that by the time she is able to recollect any of it, it will be nothing more than a fuzzy dream. Maybe in enough time, the good flashbacks will outweigh the bad for us, too. I would much rather the impressions of those short lived weeks before all hell broke loose. Before the bed rest. Before anyone aside from MFH and I knew that our family was about to become a little bit bigger. Things were certainly easier then. Things were safe. She was safe. Back when we were unaware.
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Saturday, October 8, 2011
The Worst Day Of The Rest Of Our Lives.....
This update is loooong. You have been warned....
The past three and half weeks have been impossible. Impossible to make sense of. Impossible to hold it together. Impossible to properly verbalize. But I will try. Out of respect for him, and for my family as a whole, I won't go into specifics about it. But what I can say is that MFH and I spent a lot of time loathing each other. Unspoken accusations. Misplacing blame. Slamming doors. The fucking stink eye. Oh yeah, we went there. Obviously, the stress of our youngest child being critically ill is taking it's toll. For as bad as that sounds, and for the most part, we are okay. We're trying as best as we know how to. We get angry, and then we get over it. But there's nothing like hearing some seriously shitty news about your sick child to unite two people for the greater good.
She was hangin' in there. Gaining and growing. Doing her thing. They performed the bronchoscopy two weeks ago and discovered nothing. No sublgottic stenosis. Chalk one up for Team Little Bird. Sounds like some awesome news, right? Not so fast. I'd give my left lung right now for that diagnosis.
Her blood gases kept coming back really, really good. Time to reattempt extubation yet again. The tube came out, and this time she lasted four whole hours before she began to struggle enough for her doctors to cry 'uncle'. She was overexerting herself, and unable to sustain the physical stress of simply breathing. Her doctor tried to reintubate her, but failed, twice. She then called for a respiratory technician to assist her. The tech made two more attempts, but still could not insert the tube. An ENT specialist was immediately summoned to her bedside, along with two anesthesiologists who induced general in order to finally be able to place it.
This made no sense. The scope showed no obstructions. Up until four hours earlier, Little Bird looked fantastic. Her vitals were spot on. She was alert, and very playful. She looked physically wonderful. So they opted to take a CT scan of her lungs, rather than the usual x-rays, to get a better look and hopefully pinpoint the problem. The results? Were absolutely devastating.
We've known, since her birth, that Little bird was facing upwards of eighty percent odds of having chronic lung disease. We knew, since August, that she has bronchopulmonary dysplasia. We also knew she was developing scar tissue, and was becoming dependent upon the ventilator. We've known, that because her lungs never had the opportunity to fully develop, that all of the above could or would happen. And we were aware that there was a very strong possibility of the ventilator making it all so much worse. But we never fully expected this.
This, the prognosis that we've dreaded from the word 'Decadron'. Approximately ninety percent of her lung tissue is scarred. Ninety percent. Steroids are no longer an option. The only course of treatment now, the only thing that is sustaining our daughter's life, is the very piece of equipment that threatens it. We have no other choice. She needs a tracheotomy. Our very first question to them, our first response to this news, was "How long will she be on it?". Her doctor replied, "Well, in the event of something miraculous happening...". She needn't say another word. We would not have heard her anyway.
And that is the best it gets. They've since formed a team of breathing specialists exclusively assigned to her 'round-the-clock care. At any given time while she is a patient in their NICU, she will now have one of these professionals at her bedside. In the event of an emergency, they don't even want to risk the time it would take to get someone to respond to a code. Because of her size and current condition, they were hoping to buy her another month. They wanted to wait until she reached four months of age before having to have to do this to her. Hoping, even from a scientific viewpoint, for some divine intervention. But after being re-examined by the ENT specialist, the sand slipped thru that hourglass faster than they had anticipated. They fear the odds of her potentially pulling her tube out again, or it becoming clogged. In the event that it comes out, they no longer feel that they could even replace it all. Her airway is too narrow to allow the tube to easily pass thru one more time. The procedure is scheduled for this coming Monday.
From that point, it will be several more weeks before she might eventually be released to a step down nursery. She'll need that time for observation. Once she becomes stable enough, she'll be transferred to a hospital closer to home in order for us to undertake the required six weeks of training we will need to learn in order to care for her. She won't be home in time for Halloween. She can't be here on Thanksgiving. And she likely will not experience her first Christmas in front of a decorated tree in her own living room. Best case scenario, she might be home by mid January.
The only medical hope we have left is just a sliver. We talking ten percent. Had she been sixteen or seventeen years old with these same issues, we'd have none. But because she is in the midst of experiencing the fastest and largest growth period of her life, there is window of opportunity, albeit very small, that her lungs may overgrow some of the scarring enough for her to hopefully, one day be completely extubated. But the amount of damage that's already there is so vast. Every day that passes while she's on the machine only causes more destruction. Just as quickly as new alveoli develop, the pressurized oxygen being pumped into her lungs causes new tissue to deteriorate. It is very literally a race against time.
I tried to sleep last night, but couldn't. I ended up downstairs, on the sofa, crying, at three o' clock on the morning. Until I remembered that she will likely never cry again. At least not in the vocal sense. Because of so many unsuccessful attempts at removing the breathing tube, and then having to reinsert it, her vocal cords have been severely damaged. There is a very real possibility that she may not ever gain the ability to speak. As it now stands, she can no longer orally express any sound. That alone just crushes me. When Number Five was born, she was our little Paul Revere. She cried, and cried, and cried. Colic, for the first three months of her life. We wore out tracks in the living room carpet from continuously pacing the floor with her perched on our shoulders, doing whatever it took to help her be calm. We actually bitched about that. We complained that she wouldn't stop. That all we wanted was one night of peace and quiet. And now, we have Little Bird, who can't and may never be able to verbally drive us crazy. I would give anything for her to be able to do that. Anything, for her to be able to wail at the top of her lungs in the middle of a crowded grocery store one day. Anything, for her to become a teenager and tell me off while stomping up the stairs. Anything, for her to lie to me and say that she did do her homework, or argue that her curfew isn't late enough. Because I can't stop thinking about everything, every single aspect of her life that this is going to affect. How do I erase from my mind the knowing that I have only ever heard that precious sound twice, and I may never hear it again?
This is exactly what we've been trying to avoid for the past I don't even know how many weeks. This eventuality. This outcome. I never thought I would ever second guess my decision to decline medication that may or may not have prevented all of this. Since the day after she was born, I've made a conscious effort to continuously remind myself of the positives. At least she made it thru the first twenty four hours. At least the brain bleed is gone. At least she's gaining weight. At least I got to touch her. I'm not ungrateful. And we knew she would almost definitely come home with something. Some sort of fall out. But for crying out fucking loud. WHY THIS? What the fuck did she ever do to anyone to deserve a lifetime of this? I'm probably going to offend, well...just about everyone when I say this. But God really needs to get his priorities straight. Take away the voice of someone who maliciously used it to hurt others. But not hers. Maybe I'm selfish, but I don't just want her to be okay. I want her to have the best quality of life that she possibly can. She deserves nothing less than that.
MFH and I have spent hour over hour discussing so much. The one constant question that keeps popping up between us is how are we going to do this? How is this going to happen? I don't doubt our ability to learn what we need to learn. We're already doing everything in our power to prepare our family as best we can for all of the changes that are coming. But I would be a liar if I said I trusted myself with her life. The risk is everything. There is no margin for error. And the equipment she requires might come with a manual, but it doesn't come with any guarantees.
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The past three and half weeks have been impossible. Impossible to make sense of. Impossible to hold it together. Impossible to properly verbalize. But I will try. Out of respect for him, and for my family as a whole, I won't go into specifics about it. But what I can say is that MFH and I spent a lot of time loathing each other. Unspoken accusations. Misplacing blame. Slamming doors. The fucking stink eye. Oh yeah, we went there. Obviously, the stress of our youngest child being critically ill is taking it's toll. For as bad as that sounds, and for the most part, we are okay. We're trying as best as we know how to. We get angry, and then we get over it. But there's nothing like hearing some seriously shitty news about your sick child to unite two people for the greater good.
She was hangin' in there. Gaining and growing. Doing her thing. They performed the bronchoscopy two weeks ago and discovered nothing. No sublgottic stenosis. Chalk one up for Team Little Bird. Sounds like some awesome news, right? Not so fast. I'd give my left lung right now for that diagnosis.
Her blood gases kept coming back really, really good. Time to reattempt extubation yet again. The tube came out, and this time she lasted four whole hours before she began to struggle enough for her doctors to cry 'uncle'. She was overexerting herself, and unable to sustain the physical stress of simply breathing. Her doctor tried to reintubate her, but failed, twice. She then called for a respiratory technician to assist her. The tech made two more attempts, but still could not insert the tube. An ENT specialist was immediately summoned to her bedside, along with two anesthesiologists who induced general in order to finally be able to place it.
This made no sense. The scope showed no obstructions. Up until four hours earlier, Little Bird looked fantastic. Her vitals were spot on. She was alert, and very playful. She looked physically wonderful. So they opted to take a CT scan of her lungs, rather than the usual x-rays, to get a better look and hopefully pinpoint the problem. The results? Were absolutely devastating.
We've known, since her birth, that Little bird was facing upwards of eighty percent odds of having chronic lung disease. We knew, since August, that she has bronchopulmonary dysplasia. We also knew she was developing scar tissue, and was becoming dependent upon the ventilator. We've known, that because her lungs never had the opportunity to fully develop, that all of the above could or would happen. And we were aware that there was a very strong possibility of the ventilator making it all so much worse. But we never fully expected this.
This, the prognosis that we've dreaded from the word 'Decadron'. Approximately ninety percent of her lung tissue is scarred. Ninety percent. Steroids are no longer an option. The only course of treatment now, the only thing that is sustaining our daughter's life, is the very piece of equipment that threatens it. We have no other choice. She needs a tracheotomy. Our very first question to them, our first response to this news, was "How long will she be on it?". Her doctor replied, "Well, in the event of something miraculous happening...". She needn't say another word. We would not have heard her anyway.
And that is the best it gets. They've since formed a team of breathing specialists exclusively assigned to her 'round-the-clock care. At any given time while she is a patient in their NICU, she will now have one of these professionals at her bedside. In the event of an emergency, they don't even want to risk the time it would take to get someone to respond to a code. Because of her size and current condition, they were hoping to buy her another month. They wanted to wait until she reached four months of age before having to have to do this to her. Hoping, even from a scientific viewpoint, for some divine intervention. But after being re-examined by the ENT specialist, the sand slipped thru that hourglass faster than they had anticipated. They fear the odds of her potentially pulling her tube out again, or it becoming clogged. In the event that it comes out, they no longer feel that they could even replace it all. Her airway is too narrow to allow the tube to easily pass thru one more time. The procedure is scheduled for this coming Monday.
From that point, it will be several more weeks before she might eventually be released to a step down nursery. She'll need that time for observation. Once she becomes stable enough, she'll be transferred to a hospital closer to home in order for us to undertake the required six weeks of training we will need to learn in order to care for her. She won't be home in time for Halloween. She can't be here on Thanksgiving. And she likely will not experience her first Christmas in front of a decorated tree in her own living room. Best case scenario, she might be home by mid January.
The only medical hope we have left is just a sliver. We talking ten percent. Had she been sixteen or seventeen years old with these same issues, we'd have none. But because she is in the midst of experiencing the fastest and largest growth period of her life, there is window of opportunity, albeit very small, that her lungs may overgrow some of the scarring enough for her to hopefully, one day be completely extubated. But the amount of damage that's already there is so vast. Every day that passes while she's on the machine only causes more destruction. Just as quickly as new alveoli develop, the pressurized oxygen being pumped into her lungs causes new tissue to deteriorate. It is very literally a race against time.
I tried to sleep last night, but couldn't. I ended up downstairs, on the sofa, crying, at three o' clock on the morning. Until I remembered that she will likely never cry again. At least not in the vocal sense. Because of so many unsuccessful attempts at removing the breathing tube, and then having to reinsert it, her vocal cords have been severely damaged. There is a very real possibility that she may not ever gain the ability to speak. As it now stands, she can no longer orally express any sound. That alone just crushes me. When Number Five was born, she was our little Paul Revere. She cried, and cried, and cried. Colic, for the first three months of her life. We wore out tracks in the living room carpet from continuously pacing the floor with her perched on our shoulders, doing whatever it took to help her be calm. We actually bitched about that. We complained that she wouldn't stop. That all we wanted was one night of peace and quiet. And now, we have Little Bird, who can't and may never be able to verbally drive us crazy. I would give anything for her to be able to do that. Anything, for her to be able to wail at the top of her lungs in the middle of a crowded grocery store one day. Anything, for her to become a teenager and tell me off while stomping up the stairs. Anything, for her to lie to me and say that she did do her homework, or argue that her curfew isn't late enough. Because I can't stop thinking about everything, every single aspect of her life that this is going to affect. How do I erase from my mind the knowing that I have only ever heard that precious sound twice, and I may never hear it again?
This is exactly what we've been trying to avoid for the past I don't even know how many weeks. This eventuality. This outcome. I never thought I would ever second guess my decision to decline medication that may or may not have prevented all of this. Since the day after she was born, I've made a conscious effort to continuously remind myself of the positives. At least she made it thru the first twenty four hours. At least the brain bleed is gone. At least she's gaining weight. At least I got to touch her. I'm not ungrateful. And we knew she would almost definitely come home with something. Some sort of fall out. But for crying out fucking loud. WHY THIS? What the fuck did she ever do to anyone to deserve a lifetime of this? I'm probably going to offend, well...just about everyone when I say this. But God really needs to get his priorities straight. Take away the voice of someone who maliciously used it to hurt others. But not hers. Maybe I'm selfish, but I don't just want her to be okay. I want her to have the best quality of life that she possibly can. She deserves nothing less than that.
MFH and I have spent hour over hour discussing so much. The one constant question that keeps popping up between us is how are we going to do this? How is this going to happen? I don't doubt our ability to learn what we need to learn. We're already doing everything in our power to prepare our family as best we can for all of the changes that are coming. But I would be a liar if I said I trusted myself with her life. The risk is everything. There is no margin for error. And the equipment she requires might come with a manual, but it doesn't come with any guarantees.
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Wednesday, October 5, 2011
An Update Is On It's Way Soon....
I apologize for the lack of updates over the last few weeks. I can't explain it any other way right now, other than to tell you that we've recently been given some extremely shitty and disheartening information concerning Little Bird's prognosis. Our path has changed dramatically over the past forty eight hours. Quite honestly, I'm typing this very brief message at five o' clock in the morning, having spent the last seventeen hours playing phone tag with just about every staff member at the hospital and agonizing with MFH over something no parents should ever have to consider.
Right now, I need to sleep. And to get some sort of caffeine in me. And then I promise, I will explain everything in the next post. In the meantime, can you do me a favor? Just pray. It's pretty much all we can do.
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Right now, I need to sleep. And to get some sort of caffeine in me. And then I promise, I will explain everything in the next post. In the meantime, can you do me a favor? Just pray. It's pretty much all we can do.
share on: facebook
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