Today is day fifty three. Fifty three days since Little Bird arrived ahead of her time. Each day, we wake up with her on our minds, and hope that the hours in front of us will bring us that much closer to her homecoming. To the end of this nightmare. The last fourteen days have done nothing if not push us farther away from that finish line.
This afternoon, and after several conversations with one of the doctors on her team, we've come to the realization that it's in Little Bird's best interest to transfer her to a facility better equipped to handle her medical needs. Late last night, she managed to pull her breathing tube out again. The second time in less than a week. She was immediately reintubated, but during the procedure, her doctor noticed something suspicious. Her airway is unusually constricted, to the point where she required the smallest breathing tube available. She has developed bronchopulmonary dysplasia, this we've known. But what they are seeing now seems to be subglottic stenosis. Her airway is severely constricted. It's what they believe is causing her inability to be successfully weened off of the ventilator. She needs an endoscopy in order to definitively diagnose her condition, but the hospital does not have the means to perform that on a baby her size.
We were given the option to have her transferred to one of the nation's best children's hospitals, with the hope that they might be able to help her. After conferring with the specialists there, we have agreed that this is the best place for Little Bird. Though, even they will not attempt to scope a neonate this small, they are going to give her the opportunity to grow a bit more, and they'll take it from there.
I can't lie and say I'm not absofuckinglutely terrified for her. The transport itself scares the living shit out of me. And what's worse is knowing that I can not be with her for it. After only three days into the new school year, the older kids brought home a bug, and passed it on. I'm sick enough to say I can't take the risk of being with her right now. I simply can not be next to her and not physically touch her. I just can't.
She completed her course of antibiotics to treat the NEC, and resumed her feeds this afternoon. She is pretty damned happy to be eating again. It sounds dumb, but it's a comfort for me to know that at the very least, she's comfortable. They're also sedating her to keep her from re-extubating herself, and I'm grateful for that, too. Still, it feels like day one all over again. Like we're back at the top of that first drop on the roller coaster from hell. I don't care to be famous. I don't want a million dollars. I just want Little Bird to come home. I want her to be healthy. I want her to be happy. If God would just give it all to me, I'd take it. Let me have it. I'll do it for her. I'll go days without food. I'll put up with the needles, with the fear, with the pain. He can have my health instead. Just let her have a chance.
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Wednesday, August 31, 2011
Tuesday, August 30, 2011
Trust Is A Four Letter Word....
It's just steroids. No big deal. Benefit versus risk. It will get her off the vent, right? She'll come home sooner.
Wrong. Wrong, wrong, wrong, wrong. It's not just steroids. It's seven days worth of an adult dosage of Decadron. As in, one of the very same medications administered to my mother as a last resort after they discovered that the cancer had metastasized to her brain. The key words in that sentence are 'last resort'. The therapy of Decadron in preemies is nothing new, it's been happening since the 70's. But the initial intention of this drug was to be given when all else fails. When the benefit outweighs the risk. That risk is worst case scenario. Infection, because it will suppress her immune system a lot more than it already is. There's also kidney failure, growth restriction, diabetes, retinopathy, nervous system disorders, and severe mental retardation. The purpose of this medication is to shrink the swelling in Little Bird's lungs, making it possible for her to be successfully extubated. But at what cost? She'll breath unassisted sooner, but she'll be blind. She'll come home faster, but she won't be able to spell the word 'home' until she's fifteen. Aside from shrinking her lung tissue, it will most certainly also cause her brain tissue to deteriorate. It's been directly linked to every condition listed above. And that's something that they tried to avoid telling us.
They want her off the ventilator. I want her off the ventilator. No one in this world wants her off of that machine more than she does. Five days ago, she managed to extubate herself. While on her belly, she lifted her head in an attempt to turn it to the other side. She's known to do this, but can't and shouldn't because the tube catches in her pillow. This time, she flipped her head over completely and pulled the tube out, requiring an emergency intubation.
When we declined the steroid intervention, we were specifically told they'd make a note of it in her chart. Yesterday afternoon, we discovered that one of her doctors jumped the gun, and gave her the initial dose. After learning this, and completely and verbally losing my mind, that same doctor tried to smooth the situation over by attempting to dumb me down. She essentially blamed Google for all the hype against it, as if I were ignorant enough to only read one link. Oh, I've read the links. I've read nine days and one hundred and seventeen pages of them, both bad and good. And my conscience continues to scream don't do it! Will one dose hurt her? Will it show up later on down the road? I don't know. I can't undo what's already been done. All I can do is make sure that they've discontinued the treatment, and that she will not receive so much as a band aid without our written consent. Why are we not on the phone right now, requesting a transfer? Little Bird simply isn't stable enough to withstand it. Besides, what good will that do? Tell me, where is the perfect hospital? I've yet to find one that exists that can boast a success rate of a hundred and fifty percent. Human error exists everywhere. People fail people. I've failed her.
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Wrong. Wrong, wrong, wrong, wrong. It's not just steroids. It's seven days worth of an adult dosage of Decadron. As in, one of the very same medications administered to my mother as a last resort after they discovered that the cancer had metastasized to her brain. The key words in that sentence are 'last resort'. The therapy of Decadron in preemies is nothing new, it's been happening since the 70's. But the initial intention of this drug was to be given when all else fails. When the benefit outweighs the risk. That risk is worst case scenario. Infection, because it will suppress her immune system a lot more than it already is. There's also kidney failure, growth restriction, diabetes, retinopathy, nervous system disorders, and severe mental retardation. The purpose of this medication is to shrink the swelling in Little Bird's lungs, making it possible for her to be successfully extubated. But at what cost? She'll breath unassisted sooner, but she'll be blind. She'll come home faster, but she won't be able to spell the word 'home' until she's fifteen. Aside from shrinking her lung tissue, it will most certainly also cause her brain tissue to deteriorate. It's been directly linked to every condition listed above. And that's something that they tried to avoid telling us.
They want her off the ventilator. I want her off the ventilator. No one in this world wants her off of that machine more than she does. Five days ago, she managed to extubate herself. While on her belly, she lifted her head in an attempt to turn it to the other side. She's known to do this, but can't and shouldn't because the tube catches in her pillow. This time, she flipped her head over completely and pulled the tube out, requiring an emergency intubation.
When we declined the steroid intervention, we were specifically told they'd make a note of it in her chart. Yesterday afternoon, we discovered that one of her doctors jumped the gun, and gave her the initial dose. After learning this, and completely and verbally losing my mind, that same doctor tried to smooth the situation over by attempting to dumb me down. She essentially blamed Google for all the hype against it, as if I were ignorant enough to only read one link. Oh, I've read the links. I've read nine days and one hundred and seventeen pages of them, both bad and good. And my conscience continues to scream don't do it! Will one dose hurt her? Will it show up later on down the road? I don't know. I can't undo what's already been done. All I can do is make sure that they've discontinued the treatment, and that she will not receive so much as a band aid without our written consent. Why are we not on the phone right now, requesting a transfer? Little Bird simply isn't stable enough to withstand it. Besides, what good will that do? Tell me, where is the perfect hospital? I've yet to find one that exists that can boast a success rate of a hundred and fifty percent. Human error exists everywhere. People fail people. I've failed her.
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Tuesday, August 23, 2011
Somebody's Listening....
Someone must have heard our prayers last night...
Yesterday was not good. Little Bird hasn't struggled this much since her first few days. She underwent a third transfusion because her platelets bottomed out. Even though I know this is a common therapy for babies born this early, it doesn't make it any more comforting to know she's being put thru it.
When she was three days old, and after the removal of her umbilical line, her team determined that she needed a PICC line to administer long term fluids and medications. On day twelve, it was removed. They didn't anticipate that she'd need it any longer. Yesterday, and because she's dealing with so much right now, they decided to reintroduce it. It's a three hour long surgical procedure that involves, in her case, inserting a string-like catheter in the top of her foot which extends up into her heart. Manipulating this in place properly doesn't tickle, and the technique doesn't guarantee that they will be successful. This time, it wasn't. So they scheduled a second try for today. I couldn't sleep last night over all of this. Little Bird is weak. She hasn't eaten in days, and she does not have the energy right now to withstand a whole lot being done to her. I spent hours arguing our case to God, begging him to give her a little break. Just one day. Let her rest. Apparently, he heard me.
This morning, they decided to wait. They'll make another attempt tomorrow afternoon, giving her today to be free of needles and tests and procedures. Thank God for that, because she really, really needs a break right now.
Her last belly scan showed that the antibiotics are working against the NEC. But it won't be until this time next week when she can restart her feeds. And that's if we don't run into any more issues. Her vent pressure settings and oxygen were both increased again today. Her lungs are inflamed and have begun to show signs of scar tissue from prolonged time on the machine. She isn't even trying to fight it now, and I feel this when I place my hand on her back. Her monitor violations have also increased over the last six days. They sedated her in order to try and place the PICC line, but she didn't want to wake up afterward. They spent a good while trying to stimulate her, but she just shrugged them off. She doesn't want them touching her right now. She's trying to tell them to back off, but she can't say it. They need to pay attention.
The oldest four kids return to school on Monday, and the conflicts over how we are going to be able to split our time between here and the NICU have already started. The possibility of lodging an hour and a half away from home each weekend is one of several being discussed. Unless you've lived it, it really is impossible to understand how stressful something like this is upon the rest of the family. This obviously isn't normal for us. For the kids. They're used to knowing that when they go to bed at night, their parents are going to be here. They're used to dinner every day at six o' clock, together, at the kitchen table. Not microwaved pizza in front of the computer. Not mom and dad walking thru that door at midnight. Every minute of routines that they've known from the time they were born has been completely disrupted. For the past six weeks, they haven't had any sense of stability. Everything has been from one minute to the next, and we can't continue on like this. There has to be a balance. We just haven't found that yet.
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Yesterday was not good. Little Bird hasn't struggled this much since her first few days. She underwent a third transfusion because her platelets bottomed out. Even though I know this is a common therapy for babies born this early, it doesn't make it any more comforting to know she's being put thru it.
When she was three days old, and after the removal of her umbilical line, her team determined that she needed a PICC line to administer long term fluids and medications. On day twelve, it was removed. They didn't anticipate that she'd need it any longer. Yesterday, and because she's dealing with so much right now, they decided to reintroduce it. It's a three hour long surgical procedure that involves, in her case, inserting a string-like catheter in the top of her foot which extends up into her heart. Manipulating this in place properly doesn't tickle, and the technique doesn't guarantee that they will be successful. This time, it wasn't. So they scheduled a second try for today. I couldn't sleep last night over all of this. Little Bird is weak. She hasn't eaten in days, and she does not have the energy right now to withstand a whole lot being done to her. I spent hours arguing our case to God, begging him to give her a little break. Just one day. Let her rest. Apparently, he heard me.
This morning, they decided to wait. They'll make another attempt tomorrow afternoon, giving her today to be free of needles and tests and procedures. Thank God for that, because she really, really needs a break right now.
Her last belly scan showed that the antibiotics are working against the NEC. But it won't be until this time next week when she can restart her feeds. And that's if we don't run into any more issues. Her vent pressure settings and oxygen were both increased again today. Her lungs are inflamed and have begun to show signs of scar tissue from prolonged time on the machine. She isn't even trying to fight it now, and I feel this when I place my hand on her back. Her monitor violations have also increased over the last six days. They sedated her in order to try and place the PICC line, but she didn't want to wake up afterward. They spent a good while trying to stimulate her, but she just shrugged them off. She doesn't want them touching her right now. She's trying to tell them to back off, but she can't say it. They need to pay attention.
The oldest four kids return to school on Monday, and the conflicts over how we are going to be able to split our time between here and the NICU have already started. The possibility of lodging an hour and a half away from home each weekend is one of several being discussed. Unless you've lived it, it really is impossible to understand how stressful something like this is upon the rest of the family. This obviously isn't normal for us. For the kids. They're used to knowing that when they go to bed at night, their parents are going to be here. They're used to dinner every day at six o' clock, together, at the kitchen table. Not microwaved pizza in front of the computer. Not mom and dad walking thru that door at midnight. Every minute of routines that they've known from the time they were born has been completely disrupted. For the past six weeks, they haven't had any sense of stability. Everything has been from one minute to the next, and we can't continue on like this. There has to be a balance. We just haven't found that yet.
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Sunday, August 21, 2011
From Our Photo Album...
Lots of pics from the past week. Trust me when I say she is the most beautiful baby in the whole NICU, she really is. I'm not just saying that! And she knows it, too...
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| This was such a good day for her. |
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| Hello World! |
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| Hanging' Out |
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| Tiny Dancer |
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| Pointing At Us! |
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| Can You See The Weight Gain? She's Got Some Chub! |
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| This Is My Ear?!?! |
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| Hiding From The Paparazzi |
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| No Photos Please! |
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| She Loves Her Binky! |
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| Sooo Curious |
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| Playing With Daddy |
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Crazy, Cracked Out, Psychotic, Control Freak, Bitch....
I'm going to sound like the biggest, most ungrateful, bitch in the world. But what I'm about to say needs to be said. Let me start by stating for the record that I'm not a nurse hater. My sister has been in the profession for the last fifteen years, and I have nothing but the utmost respect for the work that she does. There are so many amazing women and men out there who dedicate their lives to the well being of strangers. We've had the absolute pleasure and privilege of meeting several of them during the past forty three days. Some have been heaven sent. They don't just care for Little Bird, they care about her. She isn't just another patient to them. Even beyond their bedside manners, we've watched them go the extra mile for our baby. Paula, noticing even the slightest skin imperfection and treating it before it became a problem. Patti, pushing for the doctors to recognize that she needs to be held. Warren and Vanessa, who sense the bad days and spend their break times hanging out at her isolette and talking her thru it. Kay, who pays attention to every detail, and who makes sure nothing goes overlooked by anyone. When we know they've been assigned to Little Bird, we are completely at ease.
And then, there's Chrissy.
In this unit, the nurses are assigned two babies per shift. It's pretty rare to get the same nurse two days in a row. But every now and again and due to scheduling conflicts, this happens. No biggie. Sometimes, and especially when it's one of Little Bird's buddies, this is something we look forward to. Sometimes, a nurse will actually request to take of her, which is something we would usually find endearing and sweet.
And then, there's Chrissy.
Chrissy is a crazy, cracked out, psychotic, control freak of a bitch who hides behind the professional title. And I mean that in the nicest possible way, because that's about as nice as I'm going to get as far as she is concerned. On Wednesday morning, Chrissy arrived at the unit and was assigned to Little Bird for her shift. For reasons not yet made clear to us, even after her twelve hours ended, she was still there, and taking care of her for another shift. On Thursday, she got her again. And then again on Friday. And yesterday, though she rambled on and on about not sleeping in days, the same.
Like I said, we aren't exactly sure why or how she was able to maneuver herself around our daughter for such an extended period of time. The NICU is a highly stressful and emotional field to work in. One of the main purposes of rotating the nursing staff the way that they do is to prevent attachment toward the babies that they care for. With the exception of the hospital being severely understaffed, which they currently are not, the only other reasonable explanation is that she specifically requested to take care of our daughter.
Normally, this would be a non issue. But crazy, cracked out, psycho, control freak, bitch, sorry-excuse-for-a-nurse Chrissy is anything but normal. On Wednesday, she thought Little Bird seemed restless. So she decided to try and remedy this by shoving a suppository up her ass. Oh, I'm serious. I wish I wasn't. Her reasoning was that she hadn't pooped in "days and days". Except, she had. Every day. On Thursday, she was so concerned about the possibility of a NEC diagnosis that she sent a culture of her throat secretions to be tested for pneumonia. The test turned out to be negative. I'd have been grateful for the cautiousness, had she not later told us "I was really praying she had pneumonia!". Yes, I understand that compared to a major bowel perforation, this would have been so much better a situation, but really? Really, now? You're going to say that to the parents of a three pound baby who is struggling to stay alive, let alone be able to breathe?
Yesterday, we got into the unit and approached Little Bird's isolette. I opened one of the hand terminals so that she could hear me speaking. The smell of poop was the first thing I noticed. I immediately informed Crazy Chrissy of the dirty diaper, yet she did nothing. She told us that because the baby seemed so comfortable, she didn't want to disturb her and would rather wait until her next scheduled care time to clean it up. That wasn't for another hour and fifteen minutes. Are ya fucking kidding me? Too lazy to get off your ass and supervise a diaper change so you're going to risk my child getting a skin infection?
I bit my tongue. Little Bird also didn't need the stress and anxiety of her mother being forcibly thrown out of the NICU. So I opened the other terminal and placed one hand on her head and the other on her back, and we gossiped together for a little while. Well, I did all of the talking. Little Bird is a great listener. Within minutes, Crazy was hovering right behind us. She then spouted the most attacking and angering statement from her mouth. And it wasn't as much what she said, but the way she said it. With a very cocky head tilt and a sly smile, she decided to very ignorantly repeat what I already knew: "Because she's not doing so well, it's going to be at least another week to ten days before you get to hold her. Maybe even two more weeks!". God clearly granted me the serenity to not beat a bitch in that very moment. It was miraculous.
She then began to bury her head in the baby's chart, pretending to be making a written copy of information. And she asked me, "So, how many children do you have?". I get asked this a lot, by nearly every nurse I've met. Not a problem. I went on to explain our family to her and answered her other question about the kids ages. And she so politely exclaimed, "Well, at least you took a break between the eleven year old and the three year old. I hope you're using birth control now".
In between being slammed for being a mother, she also took it upon herself to question my obstetrical care during this last pregnancy. Wait, let me rephrase that. She insinuated that I didn't have any obstetrical care. After quickly flipping thru the baby's chart, she asked me about the events surrounding her birth, and asked me if I'd ever "gone thru with" the typical prenatal lab work. I was completely confused by this, and responded by asking her why she was so curious. She said she wanted to "double check" that Little Bird received her thirty day Hib. vaccine. Yes. My sentiments exactly. What the fuck does the price of apples in China have anything to do with it? At this point, my tongue was bleeding profusely. I assured her that yes, I was and still am under a doctor's care. That yes, there were complications that hindered the baby's gestation. And that no, absolutely nobody suspected what occurred to actually happen.
You'd think she'd have satisfied her personal need to provoke a fist fight with me, but she kept going.
By this time, MFH sensed a beat down coming, and tried to change the subject by asking her random medical questions about Little Bird's latest x-rays. Not only could she not answer anything, she proved incompetent to even understand what he was curious about. So she continued on to tell us how just the evening before, she "felt bad" for her, and took it upon herself to dress and swaddle her "so that she'd be more comfortable". Yes. Dress and swaddle my child, who is in an isolette that is continuously held at a temperature of ninety eight degrees. Because that isn't a life threatening stunt to pull in and of itself at all. Weeks ago, I specifically asked Doc H about clothing. Could I bring her something? Maybe even just a hat? And he specifically said she could not be dressed. Because the bed maintains her temperature for her, clothing will cause her to overheat, raising her heart rate and blood pressure and potentially causing her to stroke out. Aside from that is the factor of overstimulation caused by the effort it takes to secure clothing to her body and around all of the equipment she is attached to. Just recalling the conversation as I type this has me pissed off to the extent that I want to punch the fucking monitor.
Oh, but I'm not even finished explaining the best part of yesterday's ordeal. So, Crazy finally decided to do Little Bird's care, and asked me if I wanted to take her temperature. Really, does she even need to ask? Do you think I'm going to refuse? I did take it, and it was fine. And so I anxiously stood there next to the bed, awaiting what should have been the first dirty diaper I would have gotten to change. Except I didn't get to. Instead, I was informed that "there'll be plenty more of these for you to clean up down the road".
And then came the vent tube. Little Bird doesn't have the ability to cough in order to clear her throat. Even if she did, she can't because of the machine. Part of her care procedure involves the manual suctioning of this tube in order to help her breathe. I've witnessed this done several times by many a different nurse, and always with the slightest of hand that she doesn't even realize it happened. Ya think Nurse Ratchet could accomplish something like this? Awe hell no. When she yanked the plunger back, she did it with such force that you could visibly tell she took her breath away. It was in that moment that I realized I'd been granted sainthood by Jesus Christ himself, because I still didn't hit her.
Literally trying not to cry, I pulled out the camera and did my best to ignore her until I could go thru the proper channels and make sure I do my best to have her ass suspended. Oh yes, I'm already on it. I took close to a hundred photos of MFH and the baby playing together. Little Bird's eyes began to drop and she was showing signs that she was ready for a nap. So I handed the camera to MFH and told him I was going to scrub up again. I wanted to touch her, to hold her hand one last time before we had to leave. No sooner did I do that and return to her bedside did Bitch walk over to me and state, "I really don't know how to say this the right way, but don't touch her again. I really think she needs her rest".
That. Was. IT. I turned to Little Bird, told her I'd be back after I had Psycho's license revoked, blew her kisses, went home, and started making phone calls to the unit's director.
I'm not done with that crack head. Not by a long shot. I promise everyone who is reading this post that by the time my daughter come's home, there will be one less nurse on that rotation. There will be one less nurse legally licensed to practice in the state of Pennsylvania. And there will be at least one set of parents who will no longer be subjected to her bullshit. Don't get me wrong. I respect the facility that she's in. In fact, it's the same hospital responsible for saving Number Four's life eleven years ago. Personally, I can't think of a better place, and I do trust them a hundred and ten percent. But never in the last fifteen and a half years of being a mother have I ever felt so uncomfortable about someone even being in the same vicinity of one of my children. If I find out that she so much as inquires about Little Bird from this point on, I am so going to be on the news. "New tonight at eleven, a local woman arrested in an area hospital for assaulting a staff member!". It's coming. God help her. She's going to need it.
PS- Karma really is a bitch. After reviewing yesterday's videos and pictures, we discovered that we have quite a bit of proof of the events that took place. I'm going to post them separately, coming up next...
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And then, there's Chrissy.
In this unit, the nurses are assigned two babies per shift. It's pretty rare to get the same nurse two days in a row. But every now and again and due to scheduling conflicts, this happens. No biggie. Sometimes, and especially when it's one of Little Bird's buddies, this is something we look forward to. Sometimes, a nurse will actually request to take of her, which is something we would usually find endearing and sweet.
And then, there's Chrissy.
Chrissy is a crazy, cracked out, psychotic, control freak of a bitch who hides behind the professional title. And I mean that in the nicest possible way, because that's about as nice as I'm going to get as far as she is concerned. On Wednesday morning, Chrissy arrived at the unit and was assigned to Little Bird for her shift. For reasons not yet made clear to us, even after her twelve hours ended, she was still there, and taking care of her for another shift. On Thursday, she got her again. And then again on Friday. And yesterday, though she rambled on and on about not sleeping in days, the same.
Like I said, we aren't exactly sure why or how she was able to maneuver herself around our daughter for such an extended period of time. The NICU is a highly stressful and emotional field to work in. One of the main purposes of rotating the nursing staff the way that they do is to prevent attachment toward the babies that they care for. With the exception of the hospital being severely understaffed, which they currently are not, the only other reasonable explanation is that she specifically requested to take care of our daughter.
Normally, this would be a non issue. But crazy, cracked out, psycho, control freak, bitch, sorry-excuse-for-a-nurse Chrissy is anything but normal. On Wednesday, she thought Little Bird seemed restless. So she decided to try and remedy this by shoving a suppository up her ass. Oh, I'm serious. I wish I wasn't. Her reasoning was that she hadn't pooped in "days and days". Except, she had. Every day. On Thursday, she was so concerned about the possibility of a NEC diagnosis that she sent a culture of her throat secretions to be tested for pneumonia. The test turned out to be negative. I'd have been grateful for the cautiousness, had she not later told us "I was really praying she had pneumonia!". Yes, I understand that compared to a major bowel perforation, this would have been so much better a situation, but really? Really, now? You're going to say that to the parents of a three pound baby who is struggling to stay alive, let alone be able to breathe?
Yesterday, we got into the unit and approached Little Bird's isolette. I opened one of the hand terminals so that she could hear me speaking. The smell of poop was the first thing I noticed. I immediately informed Crazy Chrissy of the dirty diaper, yet she did nothing. She told us that because the baby seemed so comfortable, she didn't want to disturb her and would rather wait until her next scheduled care time to clean it up. That wasn't for another hour and fifteen minutes. Are ya fucking kidding me? Too lazy to get off your ass and supervise a diaper change so you're going to risk my child getting a skin infection?
I bit my tongue. Little Bird also didn't need the stress and anxiety of her mother being forcibly thrown out of the NICU. So I opened the other terminal and placed one hand on her head and the other on her back, and we gossiped together for a little while. Well, I did all of the talking. Little Bird is a great listener. Within minutes, Crazy was hovering right behind us. She then spouted the most attacking and angering statement from her mouth. And it wasn't as much what she said, but the way she said it. With a very cocky head tilt and a sly smile, she decided to very ignorantly repeat what I already knew: "Because she's not doing so well, it's going to be at least another week to ten days before you get to hold her. Maybe even two more weeks!". God clearly granted me the serenity to not beat a bitch in that very moment. It was miraculous.
She then began to bury her head in the baby's chart, pretending to be making a written copy of information. And she asked me, "So, how many children do you have?". I get asked this a lot, by nearly every nurse I've met. Not a problem. I went on to explain our family to her and answered her other question about the kids ages. And she so politely exclaimed, "Well, at least you took a break between the eleven year old and the three year old. I hope you're using birth control now".
In between being slammed for being a mother, she also took it upon herself to question my obstetrical care during this last pregnancy. Wait, let me rephrase that. She insinuated that I didn't have any obstetrical care. After quickly flipping thru the baby's chart, she asked me about the events surrounding her birth, and asked me if I'd ever "gone thru with" the typical prenatal lab work. I was completely confused by this, and responded by asking her why she was so curious. She said she wanted to "double check" that Little Bird received her thirty day Hib. vaccine. Yes. My sentiments exactly. What the fuck does the price of apples in China have anything to do with it? At this point, my tongue was bleeding profusely. I assured her that yes, I was and still am under a doctor's care. That yes, there were complications that hindered the baby's gestation. And that no, absolutely nobody suspected what occurred to actually happen.
You'd think she'd have satisfied her personal need to provoke a fist fight with me, but she kept going.
By this time, MFH sensed a beat down coming, and tried to change the subject by asking her random medical questions about Little Bird's latest x-rays. Not only could she not answer anything, she proved incompetent to even understand what he was curious about. So she continued on to tell us how just the evening before, she "felt bad" for her, and took it upon herself to dress and swaddle her "so that she'd be more comfortable". Yes. Dress and swaddle my child, who is in an isolette that is continuously held at a temperature of ninety eight degrees. Because that isn't a life threatening stunt to pull in and of itself at all. Weeks ago, I specifically asked Doc H about clothing. Could I bring her something? Maybe even just a hat? And he specifically said she could not be dressed. Because the bed maintains her temperature for her, clothing will cause her to overheat, raising her heart rate and blood pressure and potentially causing her to stroke out. Aside from that is the factor of overstimulation caused by the effort it takes to secure clothing to her body and around all of the equipment she is attached to. Just recalling the conversation as I type this has me pissed off to the extent that I want to punch the fucking monitor.
Oh, but I'm not even finished explaining the best part of yesterday's ordeal. So, Crazy finally decided to do Little Bird's care, and asked me if I wanted to take her temperature. Really, does she even need to ask? Do you think I'm going to refuse? I did take it, and it was fine. And so I anxiously stood there next to the bed, awaiting what should have been the first dirty diaper I would have gotten to change. Except I didn't get to. Instead, I was informed that "there'll be plenty more of these for you to clean up down the road".
And then came the vent tube. Little Bird doesn't have the ability to cough in order to clear her throat. Even if she did, she can't because of the machine. Part of her care procedure involves the manual suctioning of this tube in order to help her breathe. I've witnessed this done several times by many a different nurse, and always with the slightest of hand that she doesn't even realize it happened. Ya think Nurse Ratchet could accomplish something like this? Awe hell no. When she yanked the plunger back, she did it with such force that you could visibly tell she took her breath away. It was in that moment that I realized I'd been granted sainthood by Jesus Christ himself, because I still didn't hit her.
Literally trying not to cry, I pulled out the camera and did my best to ignore her until I could go thru the proper channels and make sure I do my best to have her ass suspended. Oh yes, I'm already on it. I took close to a hundred photos of MFH and the baby playing together. Little Bird's eyes began to drop and she was showing signs that she was ready for a nap. So I handed the camera to MFH and told him I was going to scrub up again. I wanted to touch her, to hold her hand one last time before we had to leave. No sooner did I do that and return to her bedside did Bitch walk over to me and state, "I really don't know how to say this the right way, but don't touch her again. I really think she needs her rest".
That. Was. IT. I turned to Little Bird, told her I'd be back after I had Psycho's license revoked, blew her kisses, went home, and started making phone calls to the unit's director.
I'm not done with that crack head. Not by a long shot. I promise everyone who is reading this post that by the time my daughter come's home, there will be one less nurse on that rotation. There will be one less nurse legally licensed to practice in the state of Pennsylvania. And there will be at least one set of parents who will no longer be subjected to her bullshit. Don't get me wrong. I respect the facility that she's in. In fact, it's the same hospital responsible for saving Number Four's life eleven years ago. Personally, I can't think of a better place, and I do trust them a hundred and ten percent. But never in the last fifteen and a half years of being a mother have I ever felt so uncomfortable about someone even being in the same vicinity of one of my children. If I find out that she so much as inquires about Little Bird from this point on, I am so going to be on the news. "New tonight at eleven, a local woman arrested in an area hospital for assaulting a staff member!". It's coming. God help her. She's going to need it.
PS- Karma really is a bitch. After reviewing yesterday's videos and pictures, we discovered that we have quite a bit of proof of the events that took place. I'm going to post them separately, coming up next...
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Why?
The past eleven days have been an emotional and medical tug of war. I don't even know where to begin explaining everything that's been happening. In my last update, I mentioned that Little Bird's platelets were once again low. The next day, she ended up needing and receiving the second transfusion. She was such a little trooper, and soldiered on thru it again without an issue. For the following few days afterward, she continued to progress. Her weight even surpassed the three pound mark which was definitely something to celebrate. Her IV's were also gone, again. And she was holding steady on the vent. But by Wednesday afternoon, she began to decline.
She is forty three days old today. Thirty six of them have been spent on a ventilator. A ventilator that is now causing damage and deterioration of her lung tissue. Her most recent chest x-rays have revealed that her airway is inflamed, making it that much more difficult for her to successfully breathe on her own. She has become dependent upon the machine. We knew that her risk of developing lung disease was already phenomenally high just from the severity of her prematurity itself. But now, the issue is extremely concerning. Three days ago, we were pressed to make a decision concerning consent of a controversial intervention that the hospital wants to give her in order to reattempt extubation. Basically, they want to administer a long course of high dose steroids aimed at bulking up her lung tissue and capacity enough to overthrow the scar tissue she is developing. Sounds simple enough. Until they told us that there are some very serious long term side affects. Side affects that include the statistics that say that as many as sixteen out of sixty two neonates who've received this therapy have not survived.
About an hour ago, I made the call, and declined the medication. I hear them when they tell us that the benefit outweighs the risk. I get it. But something about this just does not feel right to me. I can not, in good conscience, agree to it. And it kills me to have to say no. I know she needs to get off of this machine. Believe me, I do. I want nothing more than to see that monstrosity of a tube gone from her beautiful little face. To see her smile in comfort rather than wince in pain when she tries to stretch or yawn. But not like that.There are a few other options that she may be a candidate for, and tomorrow, we'll discuss those with her doctors.
Doc H noticed some recent and telling changes in her that prompted him to run a series of tests that have since confirmed that she does in fact have the early stages of NEC. The cultures came back negative for infection, but x-rays have indicated that there is a section of her bowel that looks extremely suspicious. Her feeds were halted on Friday, and she began broad spectrum antibiotics in an attempt to gain some sort of control over the situation. All of her IV's have since been reintroduced to provide fluids, lipids, and glucose. She is very, very angry about not having her food. And I am very, very angry that she's already lost forty grams because of this. The hardest part is knowing that this is the best this coming week is going to be, because it will be at least seven more days before she will be able to eat again, and that's best case scenario.
Why is it that the most evil and horrid human beings roam this Earth so effortlessly, and do nothing but bring pain and harm to everything and everyone they touch, yet my daughter is forced to suffer like this? Why is it that she has to endure test after test and needle after fucking needle? Or days without food? Or even so much as the comfort of a hug? Why? Where is that fair? She does not deserve to hurt like this.
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She is forty three days old today. Thirty six of them have been spent on a ventilator. A ventilator that is now causing damage and deterioration of her lung tissue. Her most recent chest x-rays have revealed that her airway is inflamed, making it that much more difficult for her to successfully breathe on her own. She has become dependent upon the machine. We knew that her risk of developing lung disease was already phenomenally high just from the severity of her prematurity itself. But now, the issue is extremely concerning. Three days ago, we were pressed to make a decision concerning consent of a controversial intervention that the hospital wants to give her in order to reattempt extubation. Basically, they want to administer a long course of high dose steroids aimed at bulking up her lung tissue and capacity enough to overthrow the scar tissue she is developing. Sounds simple enough. Until they told us that there are some very serious long term side affects. Side affects that include the statistics that say that as many as sixteen out of sixty two neonates who've received this therapy have not survived.
About an hour ago, I made the call, and declined the medication. I hear them when they tell us that the benefit outweighs the risk. I get it. But something about this just does not feel right to me. I can not, in good conscience, agree to it. And it kills me to have to say no. I know she needs to get off of this machine. Believe me, I do. I want nothing more than to see that monstrosity of a tube gone from her beautiful little face. To see her smile in comfort rather than wince in pain when she tries to stretch or yawn. But not like that.There are a few other options that she may be a candidate for, and tomorrow, we'll discuss those with her doctors.
Doc H noticed some recent and telling changes in her that prompted him to run a series of tests that have since confirmed that she does in fact have the early stages of NEC. The cultures came back negative for infection, but x-rays have indicated that there is a section of her bowel that looks extremely suspicious. Her feeds were halted on Friday, and she began broad spectrum antibiotics in an attempt to gain some sort of control over the situation. All of her IV's have since been reintroduced to provide fluids, lipids, and glucose. She is very, very angry about not having her food. And I am very, very angry that she's already lost forty grams because of this. The hardest part is knowing that this is the best this coming week is going to be, because it will be at least seven more days before she will be able to eat again, and that's best case scenario.
Why is it that the most evil and horrid human beings roam this Earth so effortlessly, and do nothing but bring pain and harm to everything and everyone they touch, yet my daughter is forced to suffer like this? Why is it that she has to endure test after test and needle after fucking needle? Or days without food? Or even so much as the comfort of a hug? Why? Where is that fair? She does not deserve to hurt like this.
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Thursday, August 11, 2011
Chasing Time....
Before we leave for the NICU, we usually call Little Bird's nurse. We need to know what we're about to walk into. Today, we decided to just go. Part of me wishes we called.
When we got there, her nurse wasn't saying much. He had just finished filling out her chart, and gave us a few moments before getting into anything. Though, he probably needed a few himself. He seemed pretty bummed to have to give us the news. After days and days of steady progress, Little Bird started having some setbacks. Her blood gas was again really good this morning. In fact, it was fabulous. So they decided to give extubation another shot, and see if she could handle the CPAP mask again. After only an hour and a half, she began to crash, and was immediately reintubated. And once again, her feeds were paused. She was actually just eating for the first time since this morning when we arrived. And again, her amounts are lowered. She was up to 24cc's, but is now back to 10. Her heart is apparently not getting the memo that her belly is ready for food.
The risk of prolonged time on the ventilator is that it can and typically does cause scarring in the lungs. We are already keenly aware of her risk of chronic lung disease just because of the severity of her prematurity itself. But the machine compounds the problem. Though she depends on it, the sooner she can come off of it, the better. I know she can do this. She just needs time.
Her sugar and electrolytes were low, and after finally getting and keeping all of her IV's out, they're back in. Her hematocrit also dipped again. At the moment, they are only monitoring this, as it isn't quite low enough for her to require another transfusion. The only good news that we received, and it is very good, is that her latest brain scan is showing that the bleed is being absorbed. It is healing, and is no longer considered a threat. For that alone, I am grateful. But we come so close to holding her. Sooo close. And then we hit a bump, and we are set two steps back again. It's been thirty two days. Thirty two very long days. I don't even know what she smells like. I want to kiss her tiny face and every one of her thirteen inches. I want to hold Little Bird.
She was quite alert today. At one point, her nurse came over to readjust her tube and pillows. She was facing me, and totally didn't expect this pair of hands to pick her up from behind and position her. The expression she made was absolutely priceless. Like a confused ninety year old who just remembered their own name. She squeezed my finger, and when I attempted to move my hand, she squeezed harder and pulled it toward her. So we just hung out together like that for a while. Me, telling her she can have a puppy if she lets them have her breathing tube. Her, kicking and stretching her legs, wondering what this puppy that I speak of is. We got some great, wide eyed photos today. I'm convinced she now knows when the camera is focused on her...
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When we got there, her nurse wasn't saying much. He had just finished filling out her chart, and gave us a few moments before getting into anything. Though, he probably needed a few himself. He seemed pretty bummed to have to give us the news. After days and days of steady progress, Little Bird started having some setbacks. Her blood gas was again really good this morning. In fact, it was fabulous. So they decided to give extubation another shot, and see if she could handle the CPAP mask again. After only an hour and a half, she began to crash, and was immediately reintubated. And once again, her feeds were paused. She was actually just eating for the first time since this morning when we arrived. And again, her amounts are lowered. She was up to 24cc's, but is now back to 10. Her heart is apparently not getting the memo that her belly is ready for food.
The risk of prolonged time on the ventilator is that it can and typically does cause scarring in the lungs. We are already keenly aware of her risk of chronic lung disease just because of the severity of her prematurity itself. But the machine compounds the problem. Though she depends on it, the sooner she can come off of it, the better. I know she can do this. She just needs time.
Her sugar and electrolytes were low, and after finally getting and keeping all of her IV's out, they're back in. Her hematocrit also dipped again. At the moment, they are only monitoring this, as it isn't quite low enough for her to require another transfusion. The only good news that we received, and it is very good, is that her latest brain scan is showing that the bleed is being absorbed. It is healing, and is no longer considered a threat. For that alone, I am grateful. But we come so close to holding her. Sooo close. And then we hit a bump, and we are set two steps back again. It's been thirty two days. Thirty two very long days. I don't even know what she smells like. I want to kiss her tiny face and every one of her thirteen inches. I want to hold Little Bird.
She was quite alert today. At one point, her nurse came over to readjust her tube and pillows. She was facing me, and totally didn't expect this pair of hands to pick her up from behind and position her. The expression she made was absolutely priceless. Like a confused ninety year old who just remembered their own name. She squeezed my finger, and when I attempted to move my hand, she squeezed harder and pulled it toward her. So we just hung out together like that for a while. Me, telling her she can have a puppy if she lets them have her breathing tube. Her, kicking and stretching her legs, wondering what this puppy that I speak of is. We got some great, wide eyed photos today. I'm convinced she now knows when the camera is focused on her...
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Sunday, August 7, 2011
Carter and Trennor....
The unit is an intimidating place. The machines, the beeping, the worry. The fear you feel for the new parents and babies that arrive after yours is almost tangible. You can read the expressions on the faces of those who've been there before you, as they are also witnesses to your own first few moments in the NICU. We're all afraid for each other as much as we are ourselves. We want to go home, and we want them to go home, too. We are all on the same team. A thumbs up from across the room when your child is extubated. A hug in the elevator from a not so unacquainted stranger who reminds you that this too shall pass. A quick update in the bathrooms when you bump into each other, one coming, one going. An email from someone you've never formally met, yet you wear the same shoes. All striving for that one goal. In such a lonely place, we are never truly alone.
Yesterday, I received a friend request from a fellow NICU Momma on Facebook. Her name is Devan, and we have a lot in common. Her son, Carter, is nearly seven months old. They've spent those seven months fighting the good fight, as Carter was born with a condition known as OEIS Complex. It is a mouthful of a diagnosis, affecting pretty much all of his digestive system. In half a years time, this precious little boy has battled thru more than I've experienced myself in the past thirty three of my own life. Yet, he greets each day with a spirit and a smile as big as the sun itself. If you're reading this entry, then you must go here http://carterslove.blogspot.com/2011_05_01_archive.html and meet this extraordinary family.
I met Devan thru our mutual friendship with Megan, who I've known for several years. Megan's son, Trennor, was also born with OEIS, and he can really use your help. In his honor, an organization has been formed to raise funds that help with the staggering expenses that threaten to hinder the medical care he needs in order to heal and grow, so he can continue to shower his mommy and daddy, and so many friends with playful giggles and kisses everyday. Your contributions will help not only this amazing little boy, but other children with special needs who soldier on so bravely as well. I urge you to take a few minutes and visit http://www.facebook.com/groups/218678161503420?ap=1 Get to know Trennor and his family. I promise you, his energy is infectious and his smile is contagious!
You may not realize how much even a few words of encouragement can comfort, but they do. Every prayer counts. It's what gets you thru another day. All any parent wants is a healthy child, and it's what every child deserves. While you're praying with us for Little Bird, please think of Trennor and Carter, and the little friends they make along the way. No offense to the nurses out there, but if we could, we'd gladly put you out of business. An empty children's unit is a happy homecoming.
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Yesterday, I received a friend request from a fellow NICU Momma on Facebook. Her name is Devan, and we have a lot in common. Her son, Carter, is nearly seven months old. They've spent those seven months fighting the good fight, as Carter was born with a condition known as OEIS Complex. It is a mouthful of a diagnosis, affecting pretty much all of his digestive system. In half a years time, this precious little boy has battled thru more than I've experienced myself in the past thirty three of my own life. Yet, he greets each day with a spirit and a smile as big as the sun itself. If you're reading this entry, then you must go here http://carterslove.blogspot.com/2011_05_01_archive.html and meet this extraordinary family.
I met Devan thru our mutual friendship with Megan, who I've known for several years. Megan's son, Trennor, was also born with OEIS, and he can really use your help. In his honor, an organization has been formed to raise funds that help with the staggering expenses that threaten to hinder the medical care he needs in order to heal and grow, so he can continue to shower his mommy and daddy, and so many friends with playful giggles and kisses everyday. Your contributions will help not only this amazing little boy, but other children with special needs who soldier on so bravely as well. I urge you to take a few minutes and visit http://www.facebook.com/groups/218678161503420?ap=1 Get to know Trennor and his family. I promise you, his energy is infectious and his smile is contagious!
You may not realize how much even a few words of encouragement can comfort, but they do. Every prayer counts. It's what gets you thru another day. All any parent wants is a healthy child, and it's what every child deserves. While you're praying with us for Little Bird, please think of Trennor and Carter, and the little friends they make along the way. No offense to the nurses out there, but if we could, we'd gladly put you out of business. An empty children's unit is a happy homecoming.
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Saturday, August 6, 2011
Oh Shit!!!
Literally. Every three hours around the clock, Little Bird has what's known in the NICU as care times. These are the moments when we get to change her diaper, take her temperature, and basically interact with her hand to hand. These are also the times of day that we shoot for in terms of arriving to visit. No sooner did we walk into the unit yesterday did Little Bird's nurse begin to describe to us the nuclear fallout of a diaper change we just so happened to have missed. We've never been so grateful to arrive late. I suppose these things are to be expected, as she's now eating her goal amount of 18cc's at each feeding. She was in the midst of enjoying her half ounce when she spotted us standing next to her. Her eyes locked in on Dad, and she gazed at him for a few minutes before falling into a comfortable catnap.
They did readjust her vent settings, but for the better this time. It's lower, and she now controls her machine. When we put our ears to the hand terminals, we could hear her breathing. Her doctor was already gone for the day, but her nurse told us that when she listened, she couldn't hear the murmur herself. I don't want to speak too soon, but this could mean that the PDA has closed, or at least is even smaller now. She had a deset while were there, and had a little trouble catching it. But it was likely caused by her vent tube needing some suction. After she caught her breath, her respirations became rapid, and I remembered a little technique that her nurses sometimes use that ended up helping her. She loves having her head touched. I cupped my hand and placed it on her crown. And just like that, she was calm again. A positive for both of us. For the first time, I felt like I was physically able to do something for her.
This Tuesday will be a month. I can't believe that much time has already passed by. That we've made it this far. Being in the NICU is like going thru some sort of time warp. Minutes seem to pass by like seconds, and I can spend hours standing next to her bed just simply watching her be. It's strangely comforting to be there. I'm always anxious on the ride down. I can't wait to see her, even though we can never anticipate what we're going to walk into. The relief of being with her sets in, and by the time we're half way home, it feels as if we can sleep for days. Though she's not with us yet, we rest as is she were, always keeping a conscious awareness that the telephone can ring at any moment. I have to remind myself that it won't always be like this. But normal still sounds like such a foreign and far away place.
One of her nurses from last week's rotation stopped by to chat. We were talking about Little Bird's improvement over the past seven days and she feels she may be ready for kangaroo care any minute now. I'm counting the seconds. She's down to only one I.V. line, which they are readying to take out within the next day or two. As long as she withstands today's switch of her caffeine being delivered orally rather than intravenously. Time to start preparing.
I've mentioned before that we aren't big believers of organized religion, though we do believe in spirituality itself. I don't deny that there is a God, or something bigger beyond this life. But I have to admit, the past eight days have changed my mind in regards to how much I used to doubt. Nine days ago, Little Bird needed a lot of help. Help beyond the medical sense. So many prayers have been said for her. The collective voice of so many people must have touched God's ear. Eight days ago, she was blessed with water that millions believe has the ability to cure the sick. Seven days ago, we all began to see the changes in her progress once again. Changes for the better. When so much began to stack up against her. It's hard to fathom, but even harder to deny. Something is pulling for this child to get well. Something beyond science. Something beyond love. I realize that all is not said and done, not by a long shot. And I realize that we don't have the final say. But even one good day for her means everything to us. Just to see her comfortable. Just to be able to touch her. Just to have her with us. One more good day. It's all we ask for.
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Tuesday, August 2, 2011
A Good Tired...
The past few days have been....tiring. But in a good way. Growth spurt kind of tired. Little Bird's been busy sleeping and growing, and eating. They restarted her feeds after a few short pauses, the latest being for a blood transfusion she needed last night after a CBC showed a drop in her hematocrit. But she tolerated it very well. Her desets have been very minimal. She's also been catching herself more when she does have one. Her blood gases have been holding steady, too, and they haven't needed to readjust her vent settings. The PDA still hasn't closed yet, and there is concern about the pressure it's causing her lungs. Though we remain hopeful. Hopeful that it will close, hopeful that she will be back off the vent again soon, and hopeful that we can hold her any day now.
It sounds strange, but when we see her, it's like we can sense how she's feeling that day. Yesterday, she was very content. She lazed thru the evening, and two bouts of hiccups. She has no qualms about letting us know they piss her off by the facial expressions she makes when she experiences them. And I couldn't help but laugh. Her personality is really starting to shine. Even though her nurse told us not to expect much from her, I knew she'd open her eyes to greet us. Every so often, she'd sneak a peek to make sure we were still there. A big stretch, a tiny yawn. A little cat nap. And another glimpse. She's quick, but this time I was quicker. I managed to capture a lot of these little moments on camera...
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