Wednesday, May 1, 2013
Symptoms
With Mira's conditions, surgeries, and other specialty things going on with her body, there is a long list of symptoms and precautions we have to look out for and special measures we have to take.
Holding her: With her back incision, from the myelomeningocele repair, she can't have any pressure on her back. So when you hold her, you have to support her head, while watching out for her head incisions, and support her hips without putting pressure on her back. It sounds a little difficult, but it's not that hard once you get used to it. She can be on her side, but you just have to make sure she doesn't roll onto her back at all.
Latex allergy: While she does not currently have a latex allergy, that we're aware of, spina bifida babies are prone to developing a latex allergy if they are exposed to latex. Limiting exposure as much as possible is the best shot she has at not developing the allergy. If she can make it to adulthood without developing the allergy, chances are she won't ever develop it. So for now, we have to treat her as if she's allergic to latex. All art supplies that aren't crayola contain latex. Crayons, markers, paints, etc. Balloons. Scratch off tickets. Clothing. Bedding. Baby mattresses. Anything that is rubber is latex. Anything adhesive that doesn't say "latex free" is latex, so bandaids and tape. Spandex means latex. Then there are foods that contain some of the same genetic make-up as the rubber plant, which is latex. Those foods are bananas, kiwis, avocados, bubble gum, and water chestnuts. Also, when she gets a little older and we go out to eat, our first task at any restaurant will be finding the manager, and asking "is your food prep done with latex gloves?" Anything labeled "hypoallergenic" by law is not allowed to contain latex, which is why we had to buy her a hypoallergenic baby mattress. Many baby mattresses are stuffed with foam that contains latex, or the cover of the mattress contains latex. One of the best ways to figure out what you can get for a child with a latex allergy is calling the manufacturers before you buy anything. Almost all products have a 1-800 number on them or on their packaging somewhere. Call the number before you buy the product. Heck, call the number while you're standing in the store, right there in the aisle, looking at the product in question, and ask if any part of that product contains latex. Doing your own research is the only way to be as thorough as possible. If limiting her exposure to latex is the only way to try and help her avoid another hurdle in life, that's what we'll do.
Club Foot: Her foot curves right in the center of her foot, which causes her skin to crease. We have to make sure those creases stay clean and dry because if they don't, it could cause skin damage. Since she has no sensation in her feet, she wouldn't be able to alert us to pain like other children can, so we have to check and make sure she doesn't have any sores since she wouldn't be able to tell if she did.
Lack of sensation: As I just explained, she can't alert us to harm done to her if a problem occurs on an area where she has no sensation. Lack of sensation doesn't mean lack of function. So say if she starts walking, because maybe she'll have the function to do so, but doesn't have sensation in her feet, so she can't feel them, and she steps on a piece of glass. Normally, you or I would acknowledge that we've stepped on a piece of glass, so we would take care of our wound. Mira won't be able to acknowledge that because she can't feel it. This means that when she's no longer a newborn, she is to be wearing protective footwear at all times. Hard-soled slippers in the house, actual shoes outside at all times, water shoes in the swimming pool, etc. if she's doing anything, she is to be wearing protection on her feet. We also have to check the footwear and her socks to make sure they're not causing harmful pressure points on her skin, or cutting off circulation to any areas.
Infection: Right now, she is open to the risk of infection all over her body. She has two incisions on her head (one from her temporary drain, and one from her shunt placement). She has one incision on her abdomen (from her shunt placement). She has one incision on her back (from her myelo repair). She is catheterized every four hours, leaving her at risk for infection every time she's cathed. And her belly button is currently at risk for infection because her umbilical cord stump is still on and she's confined to her belly at all times, so it hasn't been able to air out normally, causing it to bleed instead of dry up. The symptoms we have to always look for when it comes to infection is checking her incisions daily when we clean them. If we notice swelling, redness, or drainage of any kind, the incision could be infected. Also, of she has a fever or raise in temperature, we are to call her doctors immediately because this is usually the first sign of an infection. Any temp of 100.4 or higher means we need to call her doctor right now. After her incision heal, we would call if she has a temperature of 101.5 or higher, because then we would only be looking for infection caused by cathing.
Hydrocephalus/Shunt Malfunction: We have to check her shunt track regularly. You can run your fingers along her skin on her head and feel the tube of the shunt. If you can feel puffiness around the tube, that means the cerebral spinal fluid isn't draining through the tube like it should be. So we have to feel her shunt track all the time and just check to make sure we are feeling only the tubing under her skin. We also have to check her soft spot a lot. Her soft spot, when she's calm, should be flush with her skin and bouncy. If her soft spot is protruding or firm, it means spinal fluid is building up in her head again, so her shunt is not working properly. If the veins on her temples are really visible, this is a symptom of shunt malfunction. Also, if her cry becomes really high-pitched, that's also an indicator. Projectile vomiting (not just spitting up) is a symptom, along with loss of appetite and being lethargic. There is also something called "sun setting" which is a symptom of the hydrocephalus and the shunt not working. Sun setting is where her eyes aren't sitting in the middle of her eye sockets where they belong. Instead of her eyes being between her eye lids, her pupil won't be centered from top to bottom, it will instead be centered lower, to where her bottom eyelid is covering a part of the center of her eyes. So the area that makes up your eye color and your pupil, that circular area, will be drooped down to where it looks more like a sunset behind your bottom eyelid instead of bring up and centered where it belongs. These are all the symptoms of acknowledging that her hydrocephalus is bad, and her shunt is not working properly.
Chiari malformation type II: Only 5-30% of chiari malformations ever cause symptoms. But in case hers becomes asymptomatic, we need to know what to look for. A chiari malformation, if it causes problems, can effect the vocal cords, tongue movement, facial muscles, and respiratory function. The symptoms we'll be looking for includes: choking, coughing, gagging, milk coming out of the nose when eating, wheezing, and any other respiratory distress. While high-pitched cries are a sign of hydrocephalus, raspy cries are a sign of the chiari malformation. So if we notice that her little voice is sounding a lot deeper, that could mean her chiari malformation is compressing her vocal cords. Also, when she gets a little bit older, if we notice that she's constantly leaning her head back, that's usually a sign that her chiari malformation is causing compression. When they lean their head back, they are doing so to relieve the pressure it's causing, and we'll know that her chiari malformation is causing problems.
Tethered spinal cord: Its very likely that at some point she will have a tethered spinal cord because of the surgery she needed on her back. A tethered spinal cord is caused by the scarring that takes place in the spinal cavity. Symptoms of this are back pain, leg pain, changes in bowel/bladder function and movements, spine curvature/posture, and excessively turning her feet in and out. If her spinal cord becomes tethered, she will need surgery to fix it.
Belly confined: Having her umbilical cord not dry out properly is not the only complication of her being on her belly. Her abdominal incision from her shunt surgery is also really irritated because she's laying on it all the time. Suffocation is also a concern when you have a baby that is constantly face down, which is why we have her on a monitor, even here at home. The monitor is hooked up to her by a piece of foam that wraps around her body under her armpits. Beneath each armpit is a lead. One lead monitors her heart rate, and the other one monitors her breathing. If her heart gets too fast or too slow, the monitor goes off; and if she stops breathing or her breathing becomes labored, the monitor goes off. It has gone off a few times when she cries because, naturally, when you get upset and start screaming, your heart rate accelerates. This is a little inconvenient, considering that the monitor goes off because she's upset, but because the monitor is sounding, she gets more upset from the noise. It's a catch 22, but I certainly have more peace of mind when I am able to catch a nap here and there because I know that if anything is going in a bad direction, that monitor is loud enough to wake me.
Sensitivity: Children with spina bifida are often sensitive to many things. We already found out Mira has sensitive skin, so she's probably going to be avoiding a lot of irritant, allergens, and products throughout her lifetime. But spina bifida children are often also sensitive to sound and light. Because of this, I've been paying close attention to how she reacts to noise and lights, but so far I can't tell if she reacting in a normal baby way, or if she is really being caused discomfort. This is another thing that only time will tell.
Cathing: She has to be cathed every four hours because she doesn't have the ability to empty her bladder on her own. While I already breached on the risk of infection her bladder from having to subject it to catheters all the time, there is a reason it's necessary. If her bladder is not emptied when it needs to be, the kidneys (which send urine to the bladder) can get backed up. If Mira's bladder isn't emptied in a timely manner, then the bladder can get too full, causing urine to go back up the tubes that connect to the kidneys, reflux into the kidneys, and cause kidney damage. The last thing she needs is to have actual organ damage! To monitor this, she will get a VCUG regularly, which is a scan of the kidneys to make sure no refluxing had occurred. If no refluxing had happened, her kidneys will look smooth and firm. If she has begun refluxing into her kidneys, they will look wrinkly, which indicates damage.
Syrinx: Syrinx means a collection of spinal fluid along the spinal cord. If we suddenly notice that she seems to be in pain when moving, that she's not moving like she normally moves, or that she's actually losing the ability to move/function, then she might have a build up of spinal fluid along her spinal cord.
All of these symptoms, precautions, and special measures need to be watched/compensated for at all times. I'm going to use my favorite word now: overwhelming. It's overwhelming to think about all of the things that could go wrong. It's overwhelming to think about how it's up to you to notice it. It's overwhelming to think about what could happen if you don't catch it or take care of it. There is so much to look out for, and so much to monitor, and so much to notice. But she's still just a baby! Just like any other baby, she still needs cuddled and fed and loved. Sometimes it seems like she has to be treated like an experiment or project because of how much clinical care she needs and how much monitoring has to be done. But at the end of the day, she's just a baby that cuddles up to my chest, and burps over my shoulder. She's a beautiful little bundle of joy, and I don't want to miss the small things in her life because I was too busy fretting over the possible big things that may or may not happen. So while I will monitor her and make sure to pay attention to any subtle clues that something may be wrong, I'm still going to appreciate the little moments with my baby, because those are the moments that matter most and shape our lives.
Holding her: With her back incision, from the myelomeningocele repair, she can't have any pressure on her back. So when you hold her, you have to support her head, while watching out for her head incisions, and support her hips without putting pressure on her back. It sounds a little difficult, but it's not that hard once you get used to it. She can be on her side, but you just have to make sure she doesn't roll onto her back at all.
Latex allergy: While she does not currently have a latex allergy, that we're aware of, spina bifida babies are prone to developing a latex allergy if they are exposed to latex. Limiting exposure as much as possible is the best shot she has at not developing the allergy. If she can make it to adulthood without developing the allergy, chances are she won't ever develop it. So for now, we have to treat her as if she's allergic to latex. All art supplies that aren't crayola contain latex. Crayons, markers, paints, etc. Balloons. Scratch off tickets. Clothing. Bedding. Baby mattresses. Anything that is rubber is latex. Anything adhesive that doesn't say "latex free" is latex, so bandaids and tape. Spandex means latex. Then there are foods that contain some of the same genetic make-up as the rubber plant, which is latex. Those foods are bananas, kiwis, avocados, bubble gum, and water chestnuts. Also, when she gets a little older and we go out to eat, our first task at any restaurant will be finding the manager, and asking "is your food prep done with latex gloves?" Anything labeled "hypoallergenic" by law is not allowed to contain latex, which is why we had to buy her a hypoallergenic baby mattress. Many baby mattresses are stuffed with foam that contains latex, or the cover of the mattress contains latex. One of the best ways to figure out what you can get for a child with a latex allergy is calling the manufacturers before you buy anything. Almost all products have a 1-800 number on them or on their packaging somewhere. Call the number before you buy the product. Heck, call the number while you're standing in the store, right there in the aisle, looking at the product in question, and ask if any part of that product contains latex. Doing your own research is the only way to be as thorough as possible. If limiting her exposure to latex is the only way to try and help her avoid another hurdle in life, that's what we'll do.
Club Foot: Her foot curves right in the center of her foot, which causes her skin to crease. We have to make sure those creases stay clean and dry because if they don't, it could cause skin damage. Since she has no sensation in her feet, she wouldn't be able to alert us to pain like other children can, so we have to check and make sure she doesn't have any sores since she wouldn't be able to tell if she did.
Lack of sensation: As I just explained, she can't alert us to harm done to her if a problem occurs on an area where she has no sensation. Lack of sensation doesn't mean lack of function. So say if she starts walking, because maybe she'll have the function to do so, but doesn't have sensation in her feet, so she can't feel them, and she steps on a piece of glass. Normally, you or I would acknowledge that we've stepped on a piece of glass, so we would take care of our wound. Mira won't be able to acknowledge that because she can't feel it. This means that when she's no longer a newborn, she is to be wearing protective footwear at all times. Hard-soled slippers in the house, actual shoes outside at all times, water shoes in the swimming pool, etc. if she's doing anything, she is to be wearing protection on her feet. We also have to check the footwear and her socks to make sure they're not causing harmful pressure points on her skin, or cutting off circulation to any areas.
Infection: Right now, she is open to the risk of infection all over her body. She has two incisions on her head (one from her temporary drain, and one from her shunt placement). She has one incision on her abdomen (from her shunt placement). She has one incision on her back (from her myelo repair). She is catheterized every four hours, leaving her at risk for infection every time she's cathed. And her belly button is currently at risk for infection because her umbilical cord stump is still on and she's confined to her belly at all times, so it hasn't been able to air out normally, causing it to bleed instead of dry up. The symptoms we have to always look for when it comes to infection is checking her incisions daily when we clean them. If we notice swelling, redness, or drainage of any kind, the incision could be infected. Also, of she has a fever or raise in temperature, we are to call her doctors immediately because this is usually the first sign of an infection. Any temp of 100.4 or higher means we need to call her doctor right now. After her incision heal, we would call if she has a temperature of 101.5 or higher, because then we would only be looking for infection caused by cathing.
Hydrocephalus/Shunt Malfunction: We have to check her shunt track regularly. You can run your fingers along her skin on her head and feel the tube of the shunt. If you can feel puffiness around the tube, that means the cerebral spinal fluid isn't draining through the tube like it should be. So we have to feel her shunt track all the time and just check to make sure we are feeling only the tubing under her skin. We also have to check her soft spot a lot. Her soft spot, when she's calm, should be flush with her skin and bouncy. If her soft spot is protruding or firm, it means spinal fluid is building up in her head again, so her shunt is not working properly. If the veins on her temples are really visible, this is a symptom of shunt malfunction. Also, if her cry becomes really high-pitched, that's also an indicator. Projectile vomiting (not just spitting up) is a symptom, along with loss of appetite and being lethargic. There is also something called "sun setting" which is a symptom of the hydrocephalus and the shunt not working. Sun setting is where her eyes aren't sitting in the middle of her eye sockets where they belong. Instead of her eyes being between her eye lids, her pupil won't be centered from top to bottom, it will instead be centered lower, to where her bottom eyelid is covering a part of the center of her eyes. So the area that makes up your eye color and your pupil, that circular area, will be drooped down to where it looks more like a sunset behind your bottom eyelid instead of bring up and centered where it belongs. These are all the symptoms of acknowledging that her hydrocephalus is bad, and her shunt is not working properly.
Chiari malformation type II: Only 5-30% of chiari malformations ever cause symptoms. But in case hers becomes asymptomatic, we need to know what to look for. A chiari malformation, if it causes problems, can effect the vocal cords, tongue movement, facial muscles, and respiratory function. The symptoms we'll be looking for includes: choking, coughing, gagging, milk coming out of the nose when eating, wheezing, and any other respiratory distress. While high-pitched cries are a sign of hydrocephalus, raspy cries are a sign of the chiari malformation. So if we notice that her little voice is sounding a lot deeper, that could mean her chiari malformation is compressing her vocal cords. Also, when she gets a little bit older, if we notice that she's constantly leaning her head back, that's usually a sign that her chiari malformation is causing compression. When they lean their head back, they are doing so to relieve the pressure it's causing, and we'll know that her chiari malformation is causing problems.
Tethered spinal cord: Its very likely that at some point she will have a tethered spinal cord because of the surgery she needed on her back. A tethered spinal cord is caused by the scarring that takes place in the spinal cavity. Symptoms of this are back pain, leg pain, changes in bowel/bladder function and movements, spine curvature/posture, and excessively turning her feet in and out. If her spinal cord becomes tethered, she will need surgery to fix it.
Belly confined: Having her umbilical cord not dry out properly is not the only complication of her being on her belly. Her abdominal incision from her shunt surgery is also really irritated because she's laying on it all the time. Suffocation is also a concern when you have a baby that is constantly face down, which is why we have her on a monitor, even here at home. The monitor is hooked up to her by a piece of foam that wraps around her body under her armpits. Beneath each armpit is a lead. One lead monitors her heart rate, and the other one monitors her breathing. If her heart gets too fast or too slow, the monitor goes off; and if she stops breathing or her breathing becomes labored, the monitor goes off. It has gone off a few times when she cries because, naturally, when you get upset and start screaming, your heart rate accelerates. This is a little inconvenient, considering that the monitor goes off because she's upset, but because the monitor is sounding, she gets more upset from the noise. It's a catch 22, but I certainly have more peace of mind when I am able to catch a nap here and there because I know that if anything is going in a bad direction, that monitor is loud enough to wake me.
Sensitivity: Children with spina bifida are often sensitive to many things. We already found out Mira has sensitive skin, so she's probably going to be avoiding a lot of irritant, allergens, and products throughout her lifetime. But spina bifida children are often also sensitive to sound and light. Because of this, I've been paying close attention to how she reacts to noise and lights, but so far I can't tell if she reacting in a normal baby way, or if she is really being caused discomfort. This is another thing that only time will tell.
Cathing: She has to be cathed every four hours because she doesn't have the ability to empty her bladder on her own. While I already breached on the risk of infection her bladder from having to subject it to catheters all the time, there is a reason it's necessary. If her bladder is not emptied when it needs to be, the kidneys (which send urine to the bladder) can get backed up. If Mira's bladder isn't emptied in a timely manner, then the bladder can get too full, causing urine to go back up the tubes that connect to the kidneys, reflux into the kidneys, and cause kidney damage. The last thing she needs is to have actual organ damage! To monitor this, she will get a VCUG regularly, which is a scan of the kidneys to make sure no refluxing had occurred. If no refluxing had happened, her kidneys will look smooth and firm. If she has begun refluxing into her kidneys, they will look wrinkly, which indicates damage.
Syrinx: Syrinx means a collection of spinal fluid along the spinal cord. If we suddenly notice that she seems to be in pain when moving, that she's not moving like she normally moves, or that she's actually losing the ability to move/function, then she might have a build up of spinal fluid along her spinal cord.
All of these symptoms, precautions, and special measures need to be watched/compensated for at all times. I'm going to use my favorite word now: overwhelming. It's overwhelming to think about all of the things that could go wrong. It's overwhelming to think about how it's up to you to notice it. It's overwhelming to think about what could happen if you don't catch it or take care of it. There is so much to look out for, and so much to monitor, and so much to notice. But she's still just a baby! Just like any other baby, she still needs cuddled and fed and loved. Sometimes it seems like she has to be treated like an experiment or project because of how much clinical care she needs and how much monitoring has to be done. But at the end of the day, she's just a baby that cuddles up to my chest, and burps over my shoulder. She's a beautiful little bundle of joy, and I don't want to miss the small things in her life because I was too busy fretting over the possible big things that may or may not happen. So while I will monitor her and make sure to pay attention to any subtle clues that something may be wrong, I'm still going to appreciate the little moments with my baby, because those are the moments that matter most and shape our lives.
Making A Schedule
Sleep is a rare thing in our house right now for Mira and me. With her cathing and feeding schedule overlapping only twice in a 24-hour period, there's not much time for sleeping, or much of anything else, either. Here is our schedule:
6am: Cathing and feeding
9am: Feeding
10am: Cath
12pm: Feeding
2pm: Cath
2:30pm: Give antibiotic, clean her incisions, give her a bath
3pm: Feeding
6pm: Cathing and feeding
9pm: Feeding
10pm: Cath
12am: Feeding
2am: Cath
3am: Feeding
Repeat.
Each part of her schedule takes 10-30 minutes to set up for, and 15-45 minutes to complete.
We also have to check her shunt track regularly to make sure spinal fluid isn't traveling around the tube instead of in the tube.
We have to do physical therapy stretches on her club foot a few times a day to try and stretch her foot in the right direction, and make sure there's no skin damage in the creases where her foot is turned in.
We have to change her diaper on a near constant basis because she can't control her bowels at all, and this has caused some pretty bad diaper rash, so we have to keep her as clean as possible even though she is almost always pooping.
We have to swab her belly button with alcohol much more than normal, because with her being belly confined, her umbilical cord stub doesn't get the chance to dry out like most baby's because it can't get the proper air to it.
We also have to change her butt flap regularly. A butt flap is a little square of plastic, cut from a sandwich bag, that keeps poop away from her back incision. On the top of her little butt crack, we have to keep a strip of stuff called duaderm. Duaderm is a piece of 'adhesive' that melts onto the skin. It can stay on her back for days at a time before you have to remove it with adhesive remover. You use duaderm so you can tape the butt flap onto the duaderm instead of constantly taping and untaping directly on her skin. The butt flap is necessary for keeping poop away from her incision to limit the risk of infection. So last night, I precut a bunch of little butt flaps out of sandwich bags to make it easier and quicker to change.
We also have to clean her catheters. We use syringes to spray soapy water through the caths, and another syringe to spray rinse water through them. We have to use either Joy dish soap or liquid dreft laundry detergent because these are the only soaps that don't build up and leave residue. Residue equals infections when cathing, so using the right kind of soap is important. Then the caths need laid on a surface to dry where they won't gather lint. Lint also equals infection. So thin paper towels are the best. Fluffy dish towels are a bad idea. The caths have to dry completely before being put into an air-tight container because if any water is left in the caths, bacteria will build up in the water. And festering bacteria also equals, you guessed it, infection.
We have to wash our hands vigorously, and use only antibacterial soap that doesn't have added moisturizers and fragrances. Those additives leave build-up on your hands that can transfer onto Mira and her catheters. Again, infection risk.
We've also noticed that she has REALLY sensitive skin. Even though we have to swab her belly button a lot with alcohol right now, as soon as the alcohol touches her, the skin gets bright red. And when we change her duaderm, the adhesive remover contains alcohol, and her skin gets really irritated. We have to wipe it off immediately to try and keep her little skin from getting too irritated. Because of her sensitive skin, we also can't use regular baby wipes because a lot of them contain alcohol and other additives that bother her skin. So instead we use paper towels and water. That's it. Fold the paper towels, put them in a conatainer, and soak them in water.
Since we are still monitoring her food intake, I also have to pump every 2-3 hours in between her schedule and make sure I'm storing the breast milk properly.
With a schedule like this, getting everything down pat and as efficient as possible is crucial, considering Joe works long night hours, and we also have two other children to take care of that are also at demanding stages. Aryanna is about to start walking, and Dustin is about to start school. Speaking of school, I'm currently scheduled for a six month leave from college, which began a couple of months before she was born, so I'm marked to start college back up in June. I really hope to be able to start classes back up by then to keep the overall well-being of our family headed in the right direction.
I kept hearing people say that spina bifida is a group effort, and now I see why. She needs so much, and she is counting on others to provide that for her. She needs a lot of preparation, a lot of attention, a lot of monitoring, and a lot of care. She counts on a schedule just to make sure her organs aren't damaged by her own urine, or to make sure that her skin doesn't get rubbed raw by her own feces. But that same schedule that is crucial to help her body be as healthy as possible is also so off-putting because I have to be disturbing her almost every hour, so she doesn't get to just rest like babies should. It's not fair, but it is necessary. At least for the time being. So while this is a crazy schedule, it's hard, we're exhausted, we're busier in our own home than any job I've ever had, but this is what she needs from me. This is what she depends on. Every sleepless hour, every bump in the road, every busy, frustrating moment is worth it, and I wouldn't have it any other way!
6am: Cathing and feeding
9am: Feeding
10am: Cath
12pm: Feeding
2pm: Cath
2:30pm: Give antibiotic, clean her incisions, give her a bath
3pm: Feeding
6pm: Cathing and feeding
9pm: Feeding
10pm: Cath
12am: Feeding
2am: Cath
3am: Feeding
Repeat.
Each part of her schedule takes 10-30 minutes to set up for, and 15-45 minutes to complete.
We also have to check her shunt track regularly to make sure spinal fluid isn't traveling around the tube instead of in the tube.
We have to do physical therapy stretches on her club foot a few times a day to try and stretch her foot in the right direction, and make sure there's no skin damage in the creases where her foot is turned in.
We have to change her diaper on a near constant basis because she can't control her bowels at all, and this has caused some pretty bad diaper rash, so we have to keep her as clean as possible even though she is almost always pooping.
We have to swab her belly button with alcohol much more than normal, because with her being belly confined, her umbilical cord stub doesn't get the chance to dry out like most baby's because it can't get the proper air to it.
We also have to change her butt flap regularly. A butt flap is a little square of plastic, cut from a sandwich bag, that keeps poop away from her back incision. On the top of her little butt crack, we have to keep a strip of stuff called duaderm. Duaderm is a piece of 'adhesive' that melts onto the skin. It can stay on her back for days at a time before you have to remove it with adhesive remover. You use duaderm so you can tape the butt flap onto the duaderm instead of constantly taping and untaping directly on her skin. The butt flap is necessary for keeping poop away from her incision to limit the risk of infection. So last night, I precut a bunch of little butt flaps out of sandwich bags to make it easier and quicker to change.
We also have to clean her catheters. We use syringes to spray soapy water through the caths, and another syringe to spray rinse water through them. We have to use either Joy dish soap or liquid dreft laundry detergent because these are the only soaps that don't build up and leave residue. Residue equals infections when cathing, so using the right kind of soap is important. Then the caths need laid on a surface to dry where they won't gather lint. Lint also equals infection. So thin paper towels are the best. Fluffy dish towels are a bad idea. The caths have to dry completely before being put into an air-tight container because if any water is left in the caths, bacteria will build up in the water. And festering bacteria also equals, you guessed it, infection.
We have to wash our hands vigorously, and use only antibacterial soap that doesn't have added moisturizers and fragrances. Those additives leave build-up on your hands that can transfer onto Mira and her catheters. Again, infection risk.
We've also noticed that she has REALLY sensitive skin. Even though we have to swab her belly button a lot with alcohol right now, as soon as the alcohol touches her, the skin gets bright red. And when we change her duaderm, the adhesive remover contains alcohol, and her skin gets really irritated. We have to wipe it off immediately to try and keep her little skin from getting too irritated. Because of her sensitive skin, we also can't use regular baby wipes because a lot of them contain alcohol and other additives that bother her skin. So instead we use paper towels and water. That's it. Fold the paper towels, put them in a conatainer, and soak them in water.
Since we are still monitoring her food intake, I also have to pump every 2-3 hours in between her schedule and make sure I'm storing the breast milk properly.
With a schedule like this, getting everything down pat and as efficient as possible is crucial, considering Joe works long night hours, and we also have two other children to take care of that are also at demanding stages. Aryanna is about to start walking, and Dustin is about to start school. Speaking of school, I'm currently scheduled for a six month leave from college, which began a couple of months before she was born, so I'm marked to start college back up in June. I really hope to be able to start classes back up by then to keep the overall well-being of our family headed in the right direction.
I kept hearing people say that spina bifida is a group effort, and now I see why. She needs so much, and she is counting on others to provide that for her. She needs a lot of preparation, a lot of attention, a lot of monitoring, and a lot of care. She counts on a schedule just to make sure her organs aren't damaged by her own urine, or to make sure that her skin doesn't get rubbed raw by her own feces. But that same schedule that is crucial to help her body be as healthy as possible is also so off-putting because I have to be disturbing her almost every hour, so she doesn't get to just rest like babies should. It's not fair, but it is necessary. At least for the time being. So while this is a crazy schedule, it's hard, we're exhausted, we're busier in our own home than any job I've ever had, but this is what she needs from me. This is what she depends on. Every sleepless hour, every bump in the road, every busy, frustrating moment is worth it, and I wouldn't have it any other way!
First Night
I'd be lying if I said anything other than "AAAGGGHHHHH!!!!"
It was crazy, and hectic, and wonderful in the type of way that makes you want to pull your hair out even though you wouldn't trade it for the world! That was our first night home with her. Joe and I were trying to unload everything, make sure we kept her schedule, set up everything she needs (which is when we realized or bedroom and her baby furniture is not arranged in a functional way for her needs at all), clean as we went so we weren't making more messes to clean up, oh yeah, and trying to keep our cool.
It felt so high pressure. Like if we didn't get every little detail perfect, the world was gonna come crashing down on us. Overwhelming is a word that I can't use enough to describe many parts of this experience so far. From confirmation on a sonogram, to bringing our spina bifida baby home; overwhelming is the overwhelmingly accurate word to use! She's so beautiful and strong, yet so mangled and fragile at the same time. I constantly feel the pressure of "what if I mess up?" and it scares the life out of me! That feeling had never been so strong until that first night home. In the hospital, you have the security blanket of the nurses and doctors and equipment. At home, it's just you. It's all on you, and that first night home was a night where that was the most forefront thought in my mind.
This little life, which seems so fragile, which has already been through more in her first two weeks of life than most people experience in an entire lifetime, this baby girl facing odds after odds, and struggles and triumphs; and she's counting on me. That first night, while running around my house and trying to get everything right, that thought is enough to knock the wind out of you many times over. But I'm also proud. I'm so proud of her, and I'm proud that God picked Joe and me to give this miracle to.
Joe said he thinks Mira was God's way of saying "get your acts together, there's bigger things in life." I think Joes right. There's no more sleeping in. There's no more procrastinating. Cleanliness is no longer optional. Irresponsibility is no longer optional. Being unorganized is dangerous. And Joe and I needed a wake-up call to that. Well, here she is, 8 lbs. and 4 oz. of a wake-up call that says "You can do better, and now you have to."
So while that first night home was exciting and terrifying and overwhelming, I wouldn't trade the experience for anything.
It was crazy, and hectic, and wonderful in the type of way that makes you want to pull your hair out even though you wouldn't trade it for the world! That was our first night home with her. Joe and I were trying to unload everything, make sure we kept her schedule, set up everything she needs (which is when we realized or bedroom and her baby furniture is not arranged in a functional way for her needs at all), clean as we went so we weren't making more messes to clean up, oh yeah, and trying to keep our cool.
It felt so high pressure. Like if we didn't get every little detail perfect, the world was gonna come crashing down on us. Overwhelming is a word that I can't use enough to describe many parts of this experience so far. From confirmation on a sonogram, to bringing our spina bifida baby home; overwhelming is the overwhelmingly accurate word to use! She's so beautiful and strong, yet so mangled and fragile at the same time. I constantly feel the pressure of "what if I mess up?" and it scares the life out of me! That feeling had never been so strong until that first night home. In the hospital, you have the security blanket of the nurses and doctors and equipment. At home, it's just you. It's all on you, and that first night home was a night where that was the most forefront thought in my mind.
This little life, which seems so fragile, which has already been through more in her first two weeks of life than most people experience in an entire lifetime, this baby girl facing odds after odds, and struggles and triumphs; and she's counting on me. That first night, while running around my house and trying to get everything right, that thought is enough to knock the wind out of you many times over. But I'm also proud. I'm so proud of her, and I'm proud that God picked Joe and me to give this miracle to.
Joe said he thinks Mira was God's way of saying "get your acts together, there's bigger things in life." I think Joes right. There's no more sleeping in. There's no more procrastinating. Cleanliness is no longer optional. Irresponsibility is no longer optional. Being unorganized is dangerous. And Joe and I needed a wake-up call to that. Well, here she is, 8 lbs. and 4 oz. of a wake-up call that says "You can do better, and now you have to."
So while that first night home was exciting and terrifying and overwhelming, I wouldn't trade the experience for anything.
The Ride Home
Mira is catheterized every four hours, and fed every three. Our ride home is 2-3 hours long depending on traffic and things like that. This gave us a very small window of opportunity to leave the hospital without knowing we would have to stop in cath her or feed her during the ride home. At 6am and 6pm is the only time her cathing and feeding schedule overlap, leaving us a three hour window before her next feeding at 9. When I called Joe, I let him know that we had to be leaving the hospital right after her 6pm cathing and feeding so we could make it home without having to disturb her. That almost worked out as planned...
Mira has no control of her bowels. I know you're probably thinking "what baby does", but it's a little different with her. The nerves controlling her bowels are either non-existent or compromised temporarily or permanently. Only time will tell. But because of this, any time she gets upset, tenses, moves in the right/wrong way, sneezes, hiccups, etc. she poops. Sometimes a little bit, sometimes a lot. So, at about quarter to 6, I set things up to do her cath. This turned into me standing there leaning against the crib for over a half an hour, with my head resting in one palm, while I used my other hand to just hold a wipe over her butt while she pooped over and over again. You can't cath while she's pooping because since she has to be on her belly, the poop runs right over her little pea bug (what we call girl parts in our household). So if you cath while she's pooping, you would get poop in the pea bug, and probably give her an infection. No good. So we have to learn a lot patience when cathing her because with her not having control of her bowels, diaper changes and cathing can often create an entire load of laundry and take ten times longer than you anticipate.
Since cathing took so long, I didn't start feeding her until almost 6:30. So she was still eating until almost 7. Joe and the nurse packed up all my breast milk in bins with ice (4 bins, if you don't mind me bragging a little bit!) while I continued to get Mira ready to go. She has to be on a monitor at home, so I hooked her up to our monitor and unhooked her from all the hospital monitors (yay!). We put her in her car bed (a special car seat for babies that have to be on their belly), and at about 7:20, finally made it down to our car!
We packed up the car, loaded up Mira, I sat with her in the back, and we hit the road! We made pretty good time considering we left almost an hour late. We got home at around 9:30, and Joe immediately started feeding her while I set up her cathing stuff because she was going to be due to cath at 10pm. We cut it close, but luckily she enjoyed the ride, so she was fine with being fed a half an hour late.
We were a little off schedule, and it was weird having her out in the open world after having her confined to an incubator most of her life thus far, but I was thrilled when we pulled into our driveway!
Mira has no control of her bowels. I know you're probably thinking "what baby does", but it's a little different with her. The nerves controlling her bowels are either non-existent or compromised temporarily or permanently. Only time will tell. But because of this, any time she gets upset, tenses, moves in the right/wrong way, sneezes, hiccups, etc. she poops. Sometimes a little bit, sometimes a lot. So, at about quarter to 6, I set things up to do her cath. This turned into me standing there leaning against the crib for over a half an hour, with my head resting in one palm, while I used my other hand to just hold a wipe over her butt while she pooped over and over again. You can't cath while she's pooping because since she has to be on her belly, the poop runs right over her little pea bug (what we call girl parts in our household). So if you cath while she's pooping, you would get poop in the pea bug, and probably give her an infection. No good. So we have to learn a lot patience when cathing her because with her not having control of her bowels, diaper changes and cathing can often create an entire load of laundry and take ten times longer than you anticipate.
Since cathing took so long, I didn't start feeding her until almost 6:30. So she was still eating until almost 7. Joe and the nurse packed up all my breast milk in bins with ice (4 bins, if you don't mind me bragging a little bit!) while I continued to get Mira ready to go. She has to be on a monitor at home, so I hooked her up to our monitor and unhooked her from all the hospital monitors (yay!). We put her in her car bed (a special car seat for babies that have to be on their belly), and at about 7:20, finally made it down to our car!
We packed up the car, loaded up Mira, I sat with her in the back, and we hit the road! We made pretty good time considering we left almost an hour late. We got home at around 9:30, and Joe immediately started feeding her while I set up her cathing stuff because she was going to be due to cath at 10pm. We cut it close, but luckily she enjoyed the ride, so she was fine with being fed a half an hour late.
We were a little off schedule, and it was weird having her out in the open world after having her confined to an incubator most of her life thus far, but I was thrilled when we pulled into our driveway!
Home!
I haven't had much time to update my blog since we've been home...but, that's the important part; We're actually home!!!!
The night that she gained an ounce was Sunday night/Monday morning. The nurses working the night shift on Mira's case were some of my favorite, so I decided that night would be a good time to sleep and let them take care of her. She was weighed at around 2am, where she finally gained weight. Then 3am was her feeding time, and after that I went to bed until around 9am.
I was sleeping on the couch/bed in Mira's room when my favorite nurse practitioner came in and woke me up. She said "trust me, honey, you want to join us on rounds this morning". I got up and followed her into the hall, where her, a neonatal specialist, and a doctor were rounding with their portable computer stands. I leaned up against the wall and let the nurse read down Mira's chart. When the nurse finished, they each, one at a time, said "sign off on discharge". I was so happy, I started crying! We were sure that we weren't getting out of there for another couple of days, so this was a very big and very welcomed way to start my morning!
Joe had been at work that night, so I knew he was asleep by this point, so I just started calling his cell phone and our house phone over and over again until he answered. I couldn't wait to tell him that we were finally coming home after almost two weeks of neonatal intensive care and two surgeries. We were coming home! After I talked to him, I called Tammy. I was bawling, of course, and holding Mira's hand. It kind of felt like a trick... Like the doctor was going to walk in and say "just kidding, quit packing your bags!" but she didn't, because we were really ready to go home!
When I got to hold her, feed her, and change her diaper for the first time, I remember feeling like she was finally mine, like she didn't belong to the hospital, she actually belongs to me. But this was on a whole other level! There would no longer be a nurse to take over the cathing or feeding in the middle of the night. She would no longer have a specialty team trained for her conditions on standby right near her bed. I would no longer have the resources of a hospital at my disposal at any time. I would no longer be sleeping on a couch to stay by her side. And while all of this is scary and overwhelming, I was sooooo ready to have it be on my shoulders!
I have been researching for months, and training since I arrived at children's hospital for this. I have been waiting for weeks to get to the other side of what seemed like an impossibly high and rugged hill. And this was the moment; the moment where you realize you're on the other side, running happily down hill! It just kept hitting me over and over: Shes mine, and we're going home!
The night that she gained an ounce was Sunday night/Monday morning. The nurses working the night shift on Mira's case were some of my favorite, so I decided that night would be a good time to sleep and let them take care of her. She was weighed at around 2am, where she finally gained weight. Then 3am was her feeding time, and after that I went to bed until around 9am.
I was sleeping on the couch/bed in Mira's room when my favorite nurse practitioner came in and woke me up. She said "trust me, honey, you want to join us on rounds this morning". I got up and followed her into the hall, where her, a neonatal specialist, and a doctor were rounding with their portable computer stands. I leaned up against the wall and let the nurse read down Mira's chart. When the nurse finished, they each, one at a time, said "sign off on discharge". I was so happy, I started crying! We were sure that we weren't getting out of there for another couple of days, so this was a very big and very welcomed way to start my morning!
Joe had been at work that night, so I knew he was asleep by this point, so I just started calling his cell phone and our house phone over and over again until he answered. I couldn't wait to tell him that we were finally coming home after almost two weeks of neonatal intensive care and two surgeries. We were coming home! After I talked to him, I called Tammy. I was bawling, of course, and holding Mira's hand. It kind of felt like a trick... Like the doctor was going to walk in and say "just kidding, quit packing your bags!" but she didn't, because we were really ready to go home!
When I got to hold her, feed her, and change her diaper for the first time, I remember feeling like she was finally mine, like she didn't belong to the hospital, she actually belongs to me. But this was on a whole other level! There would no longer be a nurse to take over the cathing or feeding in the middle of the night. She would no longer have a specialty team trained for her conditions on standby right near her bed. I would no longer have the resources of a hospital at my disposal at any time. I would no longer be sleeping on a couch to stay by her side. And while all of this is scary and overwhelming, I was sooooo ready to have it be on my shoulders!
I have been researching for months, and training since I arrived at children's hospital for this. I have been waiting for weeks to get to the other side of what seemed like an impossibly high and rugged hill. And this was the moment; the moment where you realize you're on the other side, running happily down hill! It just kept hitting me over and over: Shes mine, and we're going home!
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