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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