Sit-down dinners with my kids are nearly non-existent. Meals now consist of reheated whatever, fend-for-yourself type dishes and are eaten at very literally, the eleventh hour. If we're lucky, we manage to gather 'round the coffee table in the living room once a week. My oldest daughter is passing her math class, but I couldn't even tell you what her GPA currently is. I wasn't aware of Number Three's detention until he sprung it on us the morning of the day he was to take it, because the mail continues to perpetually pile up on top of the filing cabinet in our office. The bills get paid upon final, shut-off notice. I am impossible to reach. If your name doesn't end in M.D., Esq., or R.N., chances are, I haven't returned your message since this all began. A very good friend can attest to this, as I'm sure our relationship is now in need of some serious repair after I failed to catch an email she sent. It sat in my inbox for six months before I even noticed it was there. Even if I remembered, or had the time to call anyone back, talking on the phone for an hour only interferes with the specialists who are in touch on a regular basis. Our dentist contacted us, wondering where Number One's been. Number Two needs to see the optometrist. And I have yet to schedule or follow up with my six week, post partum check up. If it wasn't for the fact that my Prozac prescription is on automatic refill, along with the pharmacy calling to remind me to pick it up, I'd be in the midst of another meltdown right now.
Grocery shopping happens when the fridge is empty. I haven't stepped foot in a mall or non-essential store since before bed rest. The beds don't get made. My laundry pile would make you cry, and I couldn't even tell you where my iron is right now. The dishwasher is loaded and emptied when we realize that there are no clean glasses or forks. The vacuum isn't run until the living room carpet begs for mercy. The trash makes it to the curb, moments before the truck pulls away. Our female man took notice to our chaos months ago, and no longer rings the doorbell for anything that needs to be signed. Instead, she leaves a little reminder card in the box, that ends up in the stack of unopened letters in the office. We never got around to properly closing and covering the pool this season. There is a bedroom full of baby items that I have yet to sort thru. And a list even bigger of what we still need to pick up. I haven't attended a single shower, birthday party, or any other sort of social event since this all began. Speaking of showers? I have to schedule the time to take one. The last time I promised Number Five a bedtime story, I fell asleep on page two. Writing this blog might seem like a waste of time but honestly, it is the most convenient way to keep our family and friends updated. It's also the closest I can get to therapy at the moment. If it were up to me, I'd be posting twice a day. But even once a week is a goal that I strive to meet.
I'm not pointing this out to make anyone feel sorry for me. I'm not putting it out there to solicit help of any kind. It's just what life has been like around here for the past six months. This is what happens when your baby is hospitalized. This is what life is like inside of the NICU. True and unadulterated. When I describe our situation as if we were a snow globe, picked up and shaken, and awaiting the pieces to land where they may, this is what I'm talking about. By the wayside. The fallout.
Little Bird is doing quite well lately, better than I could ever ask for. But this does not mean that we are anywhere near the calm of this storm. I know I've said this before, but I'll say it one more time for the sake of redundancy. We are no where near out of the woods. So long as she requires the ventilator, at any setting, she will always be medically classified as critical. Even if she was at home, right now. And by all means, her homecoming doesn't mean instant organization. Actually, I expect everything to pile up even more for the first several weeks. Keep in mind, she isn't vocal. She can not verbally cry. Hence, the need for eyes to be on her at all times. Which is also part of the reason why she will require twenty four hour nursing care. Because just using the restroom or answering the door will depend upon back-up. Every single aspect of our lives has already been affected.
I'm not complaining. Even though I could. Even though I probably should. It just is what it is, which is functionally dysfunctional. For as much as I wish I could change it, I can't. I've accepted this fact. My family has accepted it, too. I hope that everyone else in our lives can, as well. Because this is our new normal. Maybe as close to it as we may ever get again. We are still very unfamiliar to this territory, and we need time to better adapt.
I suppose what I'm trying to say is that we're only human. We can only do so much. And every single thing we do (or don't do), no matter how minuscule (or magnificent) it may seem to anyone else, needs to be prioritized. So, if we choose not to attend any sort of gathering. If we don't call you back. If it takes us a week to reply. It's not because we don't want to be there. It's not because we don't want to see or speak to you. It's not because we don't value our relationship with you. It's because we are that inundated. We aren't ignoring anyone. We aren't upset with anyone. And we certainly don't mean to imply that you aren't on that list of urgency. Sooner or later, we'll find our routine. We'll get caught up on the housework, the bills, the appointments, the school work. We hope that you can understand what we continue to struggle with. We'll find our way, and when we do, we hope that you'll still be there.
share on: facebook
Saturday, December 31, 2011
Friday, December 30, 2011
Happy Birthday Number Five!!!
It was a Sunday morning four years ago, when MFH and I were blessed with our second daughter. Her birth has a very interesting story behind it. She was the most unplanned, planned pregnancy in the world. So, for those of you who would like to read about how I managed to give birth to an overdue baby, continue along....
We were in the best position of our lives. Emotionally. Financially. Physically. Realistically. We just bought the new house, and were finally settled in when I decided to sling those four words at MFH. The timing was perfect. And so, I sprung it on him. Those four words that send chills down his spine, and terrify him more than night swimming after a Jaws screening. Those four words, that can freeze even a Nascar driver in his tracks. Those four words, that subsequently caused eighty percent of the grey hair on my husband's head...
"I want another baby".
And I did. Soooo much. The kids were all in school full time and five days a week. I missed the pitter patter of little footsteps following me around the house. The smell of baby powder. The sound of giggles first thing in the morning, from the crib across the room. The calmness of cuddling together in the rocking chair at midnight. I was high on estrogen, and the all-consuming urge to expand the family. Just one more. I really meant it that time.
I'm about to get this close to giving you all way too much information, so if you want to skip ahead, I won't be offended. If you're one of my kids, I suggest that you avoid this post entirely...therapy is very expensive. We discussed this prospect for weeks when one night, before an Easter class party, I was in the midst of making enough pastel colored, egg-shaped, Rice Krispie treats for a hundred and twenty kids when MFH decided that he was down with the maternal sickness. However, his decision came with a bit of an ultimatum. We would try, one time. And if it didn't happen? We would wait a while longer. He said it was for the purpose of giving us more breathing room between Number Four and this potentially new addition, but I think he was secretly hoping that I would find a hobby and change my mind. Not wanting to give him a chance to change his mind, we...ummm....made an extra egg? And this is why none of you will ever eat another Rice Krispie treat again, either. You're welcome!
But, a week and a half later, we discovered that it wasn't meant to be. I know, right? MFH and I, who conceived twins by sharing the same fork. Who dare not even utter the "P" word in passing without at least two forms of back-up birth control in use. Who, to this day, are still trying to figure out exactly how and when Number One happened. Apparently, we couldn't make a baby when we actually tried to. Okay, no biggie. We decided we would wait, and plan it out even better later on down the road. Though, fate had other plans for us.
Five weeks later, I had the strangest dream. In it, I was having dinner with my sister and her daughter. I was holding a newborn baby, who's cap kept changing colors, from pink to blue. When I awoke, I had a deep seeded suspicion that someone very close to me was a +1. Just to be safe, I figured I'd pee on a stick and rule myself out of the equation before I began cold calling relatives and friends with my inquisition. I rubbed the sandman out of my eyes as I stumbled into the bathroom and did the deed. All I can tell you is that if there was a way to bottle the kind of reaction I had five minutes later, Starbucks and Five Hour Energy would be out of business. There they were, two very distinct blue lines.
I proceeded to check the expiration date on the box, thinking surely, there must be some mistake. When I realized how fresh the test was, I had to take two more. And both of those were positive, too. Because what good is a total adrenaline dump if you can't share it with the ones you love, I ran downstairs and thru the back door, still in my pajamas, to declare the news to MFH. Not exactly thinking about discreetness in the moment, I waved the sticks around as if they were on fire, and screamed, "I'm pregnant! I'm serious! I'm really pregnant!". MFH's reaction to my shock and awe campaign? "Shhhhh!!! Get in the house before somebody hears you!!!".
Two seconds later, we stood in front of each other in the kitchen, wearing the facial expressions of any given couple from that all-too-disturbing MTV reality show. Suddenly, we were teenagers, in our own home, trying to figure out what to do next. How were we going to explain this to the kids? How were we going to explain this to our parents? And of course, the inevitable hormonal glare toward MFH. What did you do? Though he assured me, it wasn't a preemptive strike on his part. After all, he was the one who wanted to wait a while longer. At one point during our little pow-wow, I began to panic, thinking I was going to end up on TLC on Tuesday nights at nine o'clock.
I had my first prenatal appointment a few weeks later. The midwife who performed my initial ultrasound seemed confused upon first glance of the image on the screen. "How far along did I say?", she asked. I reminded her that she told me I was seven weeks just a few minutes beforehand, when she calculated this on the calender. She then explained that the baby looked a bit bigger, around nine weeks. But that she was going to go by the calender for accuracy. This wasn't something I thought twice about at the time. I was only interested in seeing the heartbeat and knowing things were well. I left her office that morning with my sights set on Groundhog's Day. A February baby would be the first for our family.
In true Sanko tradition, the situation escalated to that of a sit com by the next visit. My midwife took a blood sample, and sent it off to the lab. A routine, triple screen test, to check for certain fetal abnormalities. "No news is good news", she said, with neither of us giving it a second thought. I had no history of any issues with this particular protocol. I was simply preoccupied with the relief of making it to the end of the first trimester without any complications. Even if it meant standing on my head, this baby was staying put until it's parole date.
The kids began a new school year. MFH and I were hanging out at Grammy's house on the afternoon when we got the most unexpected phone call. It was my midwife. "I'm so sorry, but we just received the results of your lab work. Your test levels are through the roof". And she wasn't exaggerating. The protein marker for Down's Syndrome was almost four times what it should have been, indicating an unusually high potential for Edward's Syndrome, also known as Trisomy 18. In an instant, the world around me fell away into complete nothingness. What. Did. I. Do? She immediately scheduled me for the first of many more bi-weekly, perinatology appointments to come.
Three days later, MFH and I sat in this specialist's office and directly across from a genetic counselor. She did her best to beat around the bush and soften the blow, but we knew what she was getting at. By then, I was calculated to be seventeen weeks along. And I knew in my heart that there would be no way I could ever go thru with it. I declined her choices of options, and we continued into the next room in order to undergo our first diagnostic ultrasound.
Seventeen weeks is like the threshold of being able to tell whether your having a boy or a girl. And I can tell you with all honesty, it was the least of our concerns. But I assumed that either way, it would probably be a bit too early to determine this just yet, and didn't ask. So I was a little shocked when the first question from the technician was if we wanted to know the gender. We told her we did, and she in turn, told us that we were expecting a baby girl. A little sister for Number Four. She then paused for a moment that felt like an eternity, and asked me what what my due date was. When I repeated it to her, she then told me that as far as she was able to see, there was no physical abnormalities present. However, the baby was measuring to be around twenty weeks in size. Because of this, we were subsequently rescheduled to come back every other week for more scans, just to be sure everything was okay. We were also given the option of amniocentesis. But I knew there were risks, and I couldn't help but decline it. It was too late. I had already loved that baby.
So, for the next several months, we made our bi-weekly sojourns for more pictures. With each passing appointment came the declaration from so many different sonographers that the baby was much bigger than she should have been. In the beginning of November, I underwent a 3D scan as something optional and fun to show her siblings, and one day her. This technician concurred with all of the others. She was measuring five weeks larger than expected. Still, they found nothing else amiss with the pregnancy. She made a note in my chart about it, and the next day, I received word from the midwife that the obstetrician in the practice decided that I could continue the scans there, rather than travel the distance to see the perinatologist.
I underwent the next one with my ObGyn's staff technician. About two seconds into the screening, he asked me if I was experiencing any pain. I told him I wasn't, asking him why he wanted to know. He was silent for a while, which scared MFH and I both shitless. What was he seeing? What wasn't he telling us? Did something suddenly show up? He must have saw the terror on my face, because he turned the screen in my direction, and pointed out an ovarian cyst that wasn't there two weeks earlier. You couldn't miss it. It measured nine centimeters in diameter. But, it was a relief. Even though we didn't yet know if it was something serious, it still meant that the baby was okay, and not affected.
He took about a hundred snapshots of it, and also agreed that the baby was huge for her gestational age. This, I could have told him myself. At that point, I could no longer walk or get out of a chair without assistance. Two hours soaking in the tub every night became a ritual for me, just to take the weight of her off of my hips. I was beginning to think this was one for the record books. Until Number Five, Number One was my largest baby, weighing in at five pounds, nine and a half ounces. Though, he felt more like a solid fifteen by the time he was finally out. Simply carrying to that date was already a major milestone for me. Still, there was no evidence of dilation, and no need for any bedrest. Had I not been carrying a toddler, I would have been excited enough to run laps around the parking lot. I expressed my concern about the baby's size, and the ultrasound technician said the same. He told us that he believed my due date was really, really off, and said that he was going to try to speak to the midwife. I wished him the best of luck, because changing a due date isn't a risk many practitioners are willing to take. And so far, mine wasn't budging.
On the way home from that appointment, MFH and I began to redo the math out loud to each other. Things began to make sense. Remember Rice Krispie treat night? What were the odds that we actually did conceive her then? We'd soon find out. The only bit of chance that we had on our side was knowing the exact date. When we counted the weeks from that point, it all fit like a glove. Then, the real fear began to set it. What if nobody listened? What if I went into labor, and they tried to stop it? Please God, don't make me have to birth a kindergartener!
At my next check-up, I was seen by my obstetrician. I begged, pleaded, and even tried to bribe him into changing my due date. I exclaimed, in tears, that I was going to soon be fifty five weeks pregnant but no one would listen to me. Evidently, he doesn't like chewy, marshmallow confections either, because he also refused. However, after enough of a meltdown, I did manage to get him to meet me halfway. He agreed to first test me by amnio during the following week. If the results came back proving lung maturity, we would deliver the day after, via c-section. For how much I hated the idea of the baby having to dodge a foot-long needle, I had to agree. MFH and I were that certain. My friggin' belly button not only popped, it flipped damn near inside out. I was overdue.
But Number Five had a mind of her own, and was hell bent on choosing her own birth date. In the wee hours of December 30th, I awoke with some serious, right-sided pain. It definitely wasn't labor, nor was it anything I'd ever experienced before. And then I remembered what the technician warned me about. The cyst, and the potential for it to rupture. I took a couple of Tylenol and tried to ease it with a heating pad, but a few hours later, it was still there. So I placed a call to my doc, who told me to come in to labor and delivery and see what was up. I woke MFH up and told him we needed to hit the road. On the way out the door, I glanced at the car seat and my hospital bag. Everything was packed and ready, but I really didn't think I was going to deliver yet. So I left it at home.
We got to the hospital and they set me up on fetal monitors, which were detecting some mild contractions. My doctor entered the room and asked for a rundown of events. He left for a few minutes, and returned with some information, and some options. He said that the cyst was likely rupturing. And he asked us how sure we were of the due date being wrong. He then explained that he spoke to our pediatrician, who was on call and in the hospital, and was giving us the decision. We could either fend of labor and stay the extra few days until the date of the scheduled test, transfer out to a facility with a NICU in the event that we were radically wrong, or we could deliver immediately, right there. MFH and I looked at each other for a second and told him, we were a go for take off.
Minutes later, I was in a birthing suit, numbed from the ribs down, and yelling "Somebody! I need a camera! I didn't bring my bag!".
Finally, at 11:45 that Sunday morning, MFH and I sang Happy Birthday to our fifth child. A gorgeous, seven pound, three and a quarter ounce, baby girl. And not a moment too soon. Just as the doctor delivered her, he declared what a great decision it actually was. Her umbilical cord was tied in a true knot, like a shoelace. Had we waited those extra three days, well. I don't even want to think about that. Let's just say that a miscalculated date and a worrisome sack of fluid turned out to be blessings in disguise. In the blink of an eye, Number Five stole my heart, my right fallopian tube, and half of my right ovary. But I wouldn't have it any other way.
The last four years with her have been some of the best of my life. She was the most serious infant, the most curious toddler, and the most mischievous preschooler. She is my little buddy. My Jigga. My shadow. Not a single day has gone by where she hasn't made us all laugh at her butchered version of the English language, her fearless sense of humor, or her now four year old view of the world around her. Each night, I go to sleep, anxiously anticipating tomorrow's antics of rescued ants from the front yard, or Sharpie stick people drawn on the refrigerator. She's taught me so much already. Like, not to be afraid of bugs, the joy of Magic Erasers, and patience. I can't remember what life before her was like, nor can I imagine our family without her in it.
share on: facebook
We were in the best position of our lives. Emotionally. Financially. Physically. Realistically. We just bought the new house, and were finally settled in when I decided to sling those four words at MFH. The timing was perfect. And so, I sprung it on him. Those four words that send chills down his spine, and terrify him more than night swimming after a Jaws screening. Those four words, that can freeze even a Nascar driver in his tracks. Those four words, that subsequently caused eighty percent of the grey hair on my husband's head...
"I want another baby".
And I did. Soooo much. The kids were all in school full time and five days a week. I missed the pitter patter of little footsteps following me around the house. The smell of baby powder. The sound of giggles first thing in the morning, from the crib across the room. The calmness of cuddling together in the rocking chair at midnight. I was high on estrogen, and the all-consuming urge to expand the family. Just one more. I really meant it that time.
I'm about to get this close to giving you all way too much information, so if you want to skip ahead, I won't be offended. If you're one of my kids, I suggest that you avoid this post entirely...therapy is very expensive. We discussed this prospect for weeks when one night, before an Easter class party, I was in the midst of making enough pastel colored, egg-shaped, Rice Krispie treats for a hundred and twenty kids when MFH decided that he was down with the maternal sickness. However, his decision came with a bit of an ultimatum. We would try, one time. And if it didn't happen? We would wait a while longer. He said it was for the purpose of giving us more breathing room between Number Four and this potentially new addition, but I think he was secretly hoping that I would find a hobby and change my mind. Not wanting to give him a chance to change his mind, we...ummm....made an extra egg? And this is why none of you will ever eat another Rice Krispie treat again, either. You're welcome!
But, a week and a half later, we discovered that it wasn't meant to be. I know, right? MFH and I, who conceived twins by sharing the same fork. Who dare not even utter the "P" word in passing without at least two forms of back-up birth control in use. Who, to this day, are still trying to figure out exactly how and when Number One happened. Apparently, we couldn't make a baby when we actually tried to. Okay, no biggie. We decided we would wait, and plan it out even better later on down the road. Though, fate had other plans for us.
Five weeks later, I had the strangest dream. In it, I was having dinner with my sister and her daughter. I was holding a newborn baby, who's cap kept changing colors, from pink to blue. When I awoke, I had a deep seeded suspicion that someone very close to me was a +1. Just to be safe, I figured I'd pee on a stick and rule myself out of the equation before I began cold calling relatives and friends with my inquisition. I rubbed the sandman out of my eyes as I stumbled into the bathroom and did the deed. All I can tell you is that if there was a way to bottle the kind of reaction I had five minutes later, Starbucks and Five Hour Energy would be out of business. There they were, two very distinct blue lines.
I proceeded to check the expiration date on the box, thinking surely, there must be some mistake. When I realized how fresh the test was, I had to take two more. And both of those were positive, too. Because what good is a total adrenaline dump if you can't share it with the ones you love, I ran downstairs and thru the back door, still in my pajamas, to declare the news to MFH. Not exactly thinking about discreetness in the moment, I waved the sticks around as if they were on fire, and screamed, "I'm pregnant! I'm serious! I'm really pregnant!". MFH's reaction to my shock and awe campaign? "Shhhhh!!! Get in the house before somebody hears you!!!".
Two seconds later, we stood in front of each other in the kitchen, wearing the facial expressions of any given couple from that all-too-disturbing MTV reality show. Suddenly, we were teenagers, in our own home, trying to figure out what to do next. How were we going to explain this to the kids? How were we going to explain this to our parents? And of course, the inevitable hormonal glare toward MFH. What did you do? Though he assured me, it wasn't a preemptive strike on his part. After all, he was the one who wanted to wait a while longer. At one point during our little pow-wow, I began to panic, thinking I was going to end up on TLC on Tuesday nights at nine o'clock.
I had my first prenatal appointment a few weeks later. The midwife who performed my initial ultrasound seemed confused upon first glance of the image on the screen. "How far along did I say?", she asked. I reminded her that she told me I was seven weeks just a few minutes beforehand, when she calculated this on the calender. She then explained that the baby looked a bit bigger, around nine weeks. But that she was going to go by the calender for accuracy. This wasn't something I thought twice about at the time. I was only interested in seeing the heartbeat and knowing things were well. I left her office that morning with my sights set on Groundhog's Day. A February baby would be the first for our family.
In true Sanko tradition, the situation escalated to that of a sit com by the next visit. My midwife took a blood sample, and sent it off to the lab. A routine, triple screen test, to check for certain fetal abnormalities. "No news is good news", she said, with neither of us giving it a second thought. I had no history of any issues with this particular protocol. I was simply preoccupied with the relief of making it to the end of the first trimester without any complications. Even if it meant standing on my head, this baby was staying put until it's parole date.
The kids began a new school year. MFH and I were hanging out at Grammy's house on the afternoon when we got the most unexpected phone call. It was my midwife. "I'm so sorry, but we just received the results of your lab work. Your test levels are through the roof". And she wasn't exaggerating. The protein marker for Down's Syndrome was almost four times what it should have been, indicating an unusually high potential for Edward's Syndrome, also known as Trisomy 18. In an instant, the world around me fell away into complete nothingness. What. Did. I. Do? She immediately scheduled me for the first of many more bi-weekly, perinatology appointments to come.
Three days later, MFH and I sat in this specialist's office and directly across from a genetic counselor. She did her best to beat around the bush and soften the blow, but we knew what she was getting at. By then, I was calculated to be seventeen weeks along. And I knew in my heart that there would be no way I could ever go thru with it. I declined her choices of options, and we continued into the next room in order to undergo our first diagnostic ultrasound.
Seventeen weeks is like the threshold of being able to tell whether your having a boy or a girl. And I can tell you with all honesty, it was the least of our concerns. But I assumed that either way, it would probably be a bit too early to determine this just yet, and didn't ask. So I was a little shocked when the first question from the technician was if we wanted to know the gender. We told her we did, and she in turn, told us that we were expecting a baby girl. A little sister for Number Four. She then paused for a moment that felt like an eternity, and asked me what what my due date was. When I repeated it to her, she then told me that as far as she was able to see, there was no physical abnormalities present. However, the baby was measuring to be around twenty weeks in size. Because of this, we were subsequently rescheduled to come back every other week for more scans, just to be sure everything was okay. We were also given the option of amniocentesis. But I knew there were risks, and I couldn't help but decline it. It was too late. I had already loved that baby.
So, for the next several months, we made our bi-weekly sojourns for more pictures. With each passing appointment came the declaration from so many different sonographers that the baby was much bigger than she should have been. In the beginning of November, I underwent a 3D scan as something optional and fun to show her siblings, and one day her. This technician concurred with all of the others. She was measuring five weeks larger than expected. Still, they found nothing else amiss with the pregnancy. She made a note in my chart about it, and the next day, I received word from the midwife that the obstetrician in the practice decided that I could continue the scans there, rather than travel the distance to see the perinatologist.
 |
| My Nucci |
He took about a hundred snapshots of it, and also agreed that the baby was huge for her gestational age. This, I could have told him myself. At that point, I could no longer walk or get out of a chair without assistance. Two hours soaking in the tub every night became a ritual for me, just to take the weight of her off of my hips. I was beginning to think this was one for the record books. Until Number Five, Number One was my largest baby, weighing in at five pounds, nine and a half ounces. Though, he felt more like a solid fifteen by the time he was finally out. Simply carrying to that date was already a major milestone for me. Still, there was no evidence of dilation, and no need for any bedrest. Had I not been carrying a toddler, I would have been excited enough to run laps around the parking lot. I expressed my concern about the baby's size, and the ultrasound technician said the same. He told us that he believed my due date was really, really off, and said that he was going to try to speak to the midwife. I wished him the best of luck, because changing a due date isn't a risk many practitioners are willing to take. And so far, mine wasn't budging.
On the way home from that appointment, MFH and I began to redo the math out loud to each other. Things began to make sense. Remember Rice Krispie treat night? What were the odds that we actually did conceive her then? We'd soon find out. The only bit of chance that we had on our side was knowing the exact date. When we counted the weeks from that point, it all fit like a glove. Then, the real fear began to set it. What if nobody listened? What if I went into labor, and they tried to stop it? Please God, don't make me have to birth a kindergartener!
At my next check-up, I was seen by my obstetrician. I begged, pleaded, and even tried to bribe him into changing my due date. I exclaimed, in tears, that I was going to soon be fifty five weeks pregnant but no one would listen to me. Evidently, he doesn't like chewy, marshmallow confections either, because he also refused. However, after enough of a meltdown, I did manage to get him to meet me halfway. He agreed to first test me by amnio during the following week. If the results came back proving lung maturity, we would deliver the day after, via c-section. For how much I hated the idea of the baby having to dodge a foot-long needle, I had to agree. MFH and I were that certain. My friggin' belly button not only popped, it flipped damn near inside out. I was overdue.
But Number Five had a mind of her own, and was hell bent on choosing her own birth date. In the wee hours of December 30th, I awoke with some serious, right-sided pain. It definitely wasn't labor, nor was it anything I'd ever experienced before. And then I remembered what the technician warned me about. The cyst, and the potential for it to rupture. I took a couple of Tylenol and tried to ease it with a heating pad, but a few hours later, it was still there. So I placed a call to my doc, who told me to come in to labor and delivery and see what was up. I woke MFH up and told him we needed to hit the road. On the way out the door, I glanced at the car seat and my hospital bag. Everything was packed and ready, but I really didn't think I was going to deliver yet. So I left it at home.
We got to the hospital and they set me up on fetal monitors, which were detecting some mild contractions. My doctor entered the room and asked for a rundown of events. He left for a few minutes, and returned with some information, and some options. He said that the cyst was likely rupturing. And he asked us how sure we were of the due date being wrong. He then explained that he spoke to our pediatrician, who was on call and in the hospital, and was giving us the decision. We could either fend of labor and stay the extra few days until the date of the scheduled test, transfer out to a facility with a NICU in the event that we were radically wrong, or we could deliver immediately, right there. MFH and I looked at each other for a second and told him, we were a go for take off.
Minutes later, I was in a birthing suit, numbed from the ribs down, and yelling "Somebody! I need a camera! I didn't bring my bag!".
Finally, at 11:45 that Sunday morning, MFH and I sang Happy Birthday to our fifth child. A gorgeous, seven pound, three and a quarter ounce, baby girl. And not a moment too soon. Just as the doctor delivered her, he declared what a great decision it actually was. Her umbilical cord was tied in a true knot, like a shoelace. Had we waited those extra three days, well. I don't even want to think about that. Let's just say that a miscalculated date and a worrisome sack of fluid turned out to be blessings in disguise. In the blink of an eye, Number Five stole my heart, my right fallopian tube, and half of my right ovary. But I wouldn't have it any other way.
The last four years with her have been some of the best of my life. She was the most serious infant, the most curious toddler, and the most mischievous preschooler. She is my little buddy. My Jigga. My shadow. Not a single day has gone by where she hasn't made us all laugh at her butchered version of the English language, her fearless sense of humor, or her now four year old view of the world around her. Each night, I go to sleep, anxiously anticipating tomorrow's antics of rescued ants from the front yard, or Sharpie stick people drawn on the refrigerator. She's taught me so much already. Like, not to be afraid of bugs, the joy of Magic Erasers, and patience. I can't remember what life before her was like, nor can I imagine our family without her in it.
share on: facebook
Thursday, December 29, 2011
Progress and Predictions....
I realize that the photo above might look like a whole lot of randomness, but to us, it is the best gift we never knew we wanted. Until now, Little Bird's vent pressures have never been below twenty. Even though seven seems to be her limit for the time being, I'll take it. For the past three days, her respiratory team has been attempting to dip it even lower, in hopes that she can tolerate it. Although, technically, she can. She's gone as low as five. But it doesn't leave her with a whole lot of energy to do much else, including bottle feed. The energy she exerts to breathe at this reduced level interferes with her ability to eat. So, for now, she's holding steady at seven, which is so much more than I could have ever hoped for. Speaking of eating, she's been chowing down like a champion, and taking anywhere from an ounce and a half to two ounces by mouth every four hours. This is half of every meal for her, and at this rate, she will continue to gain and grow, and make even more strides toward coming off of the ventilator.
 |
| Blueberry Eyes |
 |
| Such A Little Busy Body! |
 |
| Half Yawn...Half Smile |
 |
| Enthralled With The Fish On Her Ceiling |
 |
| ...And Very, Very Content! |
 |
| She Smells Like Heaven |
 |
| ...And Has The Face Of An Angel... |
 |
| Curious About Everything! |
 |
| The Camera Loves Her! |
 |
| Beauty Sleep |
 |
| I Wonder What She Thinks About |
 |
| "Ha! Ha! I Got My Hand Out Of The Blankies!" |
 |
| When You See It, Bricks Will Be Shat... |
 |
| Never Let Go |
 |
| "Really?!?! *Gasp!*" |
 |
| "Get Out Of Town!" |
 |
| What Do Babies Dream Of? |
 |
| Rockin' A Killer Ponytail |
 |
| Trying Not To Laugh! |
 |
| "Oh Haaiii, Siss-ay!" |
Christmas was kind to our family. We knew and expected it to be emotionally difficult, and I can't lie. It was. And a lot more than what we were prepared for. Never have I ever simply gone thru the motions of a holiday like I had this particular one. Decorating. Shopping. Baking. Wrapping. All of it felt very much like a chore. I had to constantly remind myself that Little Bird didn't realize the difference. To her, it was any other given day. For that, I am thankful. But even though I wished I could have been as oblivious, we were in a much better place than what I know we could have been. It could always be worse, and I'm grateful for my daughter's progress.
I certainly don't want her to grow too quickly, even though I pray for the days to pass as fast as possible. The sooner she can be here, at home, the better. It's so unnatural. But then again, every aspect of the last one hundred and seventy three days has been. Like an effed up version of The Curious Case of Benjamen Button. The faster she ages, the healthier she will become. The new year is upon us now, and who knows what it might bring. If you would have told me, twelve months ago, that this is what the future held for my family, I would have laughed at you. I'd like to imagine that by next Christmas, Little Bird will be off of the ventilator, and the trach will be gone, too. I'd like to think that she'll be walking, and laughing, and tangling herself up in ribbon as she discards all of her toys for the boxes, instead. I want to foresee her flipping spoonfuls of mashed potatoes at her siblings across the dinner table, and us laughing when we catch her feeding her peas to her puppy. Maybe, in a year from today, I'll look back on this post and be pleasantly surprised. I can't predict what 2012 has in store for us, but I can hope.
share on: facebook
Friday, December 16, 2011
Ask Number Five!!!
Life is hard. We all face complicated decisions, some more complex than others. Stay with him or leave her? New city or old job? Rent or buy? What shoes with which dress? Paper or plastic? Chicken or beef? Obviously, we've had many a contemplation ourselves over the course of the last five months. But I've learned a very valuable lesson that is tried and true. When in doubt, ask Number Five!
Number Five is my almost four year old daughter who gives. The. Best. Advice. Ever. She may be young, but she knows what's good. And she never fails to steer me in the right direction. She is honest. She is opinionated. She is insightful. She is spot friggin' on.
For instance, when Little Bird's doctors first uttered the word "tracheostomy", we were really at a crossroads. One night soon after, Number Five and I lay in bed and she asked me what was wrong. I told her that the baby's lungs weren't working too well, and that the doctor wanted to fix them for her by giving her a machine that would help her breathe. Number Five told me "Don't be ah-fwade, Mommy. My baby needs to breef and make winds out her nose, and she will grow big and come home!". Call me crazy, but she was right. And the other day? I asked her what I should make for dinner. She? Told me, "Nothing!". "Nothing?", I replied, and asked her what we were supposed to eat if I didn't cook. "Pizza!", she said, as a matter of fact. "Mommy, you burn too much foods!". That, I couldn't argue. What can I say? The kid has a gift!
Do you find yourself struggling with a tough-as-nails decision that you can't seem to make? Are you stumped by a sudden fork in the road? Do you seek wisdom and guidance? If so, you can submit any PG related question to asknumberfiver@gmail.com, and get that all important answer you've been searching for! All inquiries will be read aloud to her, and her videotaped responses will be posted here, on the blog. Why muddle in confusion when you can have the effortless and fundamental knowledge of a preschooler to guide you?
**DISCLAIMER: For entertainment purposes only! You've been warned!! Ask at your own risk!!!
share on: facebook
Number Five is my almost four year old daughter who gives. The. Best. Advice. Ever. She may be young, but she knows what's good. And she never fails to steer me in the right direction. She is honest. She is opinionated. She is insightful. She is spot friggin' on.
For instance, when Little Bird's doctors first uttered the word "tracheostomy", we were really at a crossroads. One night soon after, Number Five and I lay in bed and she asked me what was wrong. I told her that the baby's lungs weren't working too well, and that the doctor wanted to fix them for her by giving her a machine that would help her breathe. Number Five told me "Don't be ah-fwade, Mommy. My baby needs to breef and make winds out her nose, and she will grow big and come home!". Call me crazy, but she was right. And the other day? I asked her what I should make for dinner. She? Told me, "Nothing!". "Nothing?", I replied, and asked her what we were supposed to eat if I didn't cook. "Pizza!", she said, as a matter of fact. "Mommy, you burn too much foods!". That, I couldn't argue. What can I say? The kid has a gift!
Do you find yourself struggling with a tough-as-nails decision that you can't seem to make? Are you stumped by a sudden fork in the road? Do you seek wisdom and guidance? If so, you can submit any PG related question to asknumberfiver@gmail.com, and get that all important answer you've been searching for! All inquiries will be read aloud to her, and her videotaped responses will be posted here, on the blog. Why muddle in confusion when you can have the effortless and fundamental knowledge of a preschooler to guide you?
**DISCLAIMER: For entertainment purposes only! You've been warned!! Ask at your own risk!!!
share on: facebook
Corrections, Misquotes, and Here Come's Trouble....
So, apparently, my last update wasn't exactly correct. Before I begin this one, I'd like to explain myself. I misunderstood Little Bird's physician when I thought she said that Little Bird had already begun the medications meant to help heal her lungs. Truth be told, Little Bird actually isn't scheduled to receive her first doses until today. With that being said...
The last three days of vent pressure trials? Were. All. Her. She accomplished these on her own. Without any pharmacological interventions. At All. Knowing this is like.....whoa!!! If she could do that all by her little ole' self, I am so excited to see what other surprises she has in store for us when she is being assisted!
I'm really starting to slack on remembering the names of certain individuals that we've been meeting recently. This sucks, because they've all been not just nice experiences, but really down to Earth, as well. Last night, we met a physician's assistant who cracked me the hell up within moments of introducing ourselves. Little Bird was sound asleep when we arrived, looking like she was dreaming of flying again. MFH and I pulled up a couple of chairs and were waiting on her consciousness when the PA popped into our room to say hello. This is going to sound all kinds of wrong, but it was more mischievously funny than anything. She took notice to us anxiously anticipating the baby to wake up and play with us, and walked over to her, declaring what a shame it was that she was sleeping. She then decided to gently poke her, checking that her tubes and wires were all in place properly, wink, wink. I can't help but giggle, because it worked. Little Bird's eyes sprung opened, and then subsequently crossed in a brilliant what-the-hell moment I wish I could have captured on film. "Oh look! She's up! Wanna play with her?". You bet we did! Yes, I know, we are baby waker-uppers. But, we missed her! I consider it a preemptive strike for those inevitable middle-of-the-night play dates she'll spring on us in the near future.
Little Bird was also up to her ears in shenanigans yesterday. She's very much a little busy body, and now demands to be upright whenever she's awake because she's so friggin' nosey. Earlier in the day, she bossed her nurses around by repeatedly requesting her bouncer seat. She heard people talking in the hallway just outside of her room, but she couldn't see them. So, she did her best impersonation of Walter Matthau until she eventually got her way. And right after last night's bath? Well, I guess you can never have too much of a good thing, because she wanted another one. Her G-tube was in place and productively filling her belly when she decided to pop the tubing off her mic-key button, essentially soaking herself and her bed in formula. My little juvenile delinquent. I'm so proud of her!
It didn't take her very long to get herself in some trouble, again. She took a pretty good swipe at her face while trying to grab Dad's, and damn near clawed her own eye out. And she wasn't too pleased with me for sticking socks on her hands to prevent her from hurting herself. Until she figured out how to manipulate them like little boxing gloves. She was very much a little hooligan last night!
I also managed to capture some video for your viewing pleasure. But I should give you all a head's up. In one of them, she has a bit of a coughing fit. Don't panic! It's actually a good thing, because she's learning to clear her airway and it's something she does need to know how to do. It can appear a little scary, especially to anyone who's never witnessed a trach baby do this. MFH still kind of freaks out about it, because even he isn't quite used to it, yet. Her lack of voice when she does cough tends to make him instantly think she's choking, but she isn't. She's got it under control.
The second one is actually from a previous visit with her. I know, I know, it's just her snoozing. But, remember how I told you about her learning how manipulate her trach to make sounds? She was so comfortable that she did this in her sleep. Her not having her true voice isn't something I will ever get used to. But her being able to make these darling tones is something we cherish every single time she does. If you ever find yourself awake in the middle of the night and unable to rest, just come here and replay this clip. Watching it is so relaxing, at least to me, that I just want to crawl in that crib with her and close my eyes, too. I think I need a nap, now. Enjoy!
share on: facebook
The last three days of vent pressure trials? Were. All. Her. She accomplished these on her own. Without any pharmacological interventions. At All. Knowing this is like.....whoa!!! If she could do that all by her little ole' self, I am so excited to see what other surprises she has in store for us when she is being assisted!
 |
| Don't Let That Cute Face Fool You! |
I'm really starting to slack on remembering the names of certain individuals that we've been meeting recently. This sucks, because they've all been not just nice experiences, but really down to Earth, as well. Last night, we met a physician's assistant who cracked me the hell up within moments of introducing ourselves. Little Bird was sound asleep when we arrived, looking like she was dreaming of flying again. MFH and I pulled up a couple of chairs and were waiting on her consciousness when the PA popped into our room to say hello. This is going to sound all kinds of wrong, but it was more mischievously funny than anything. She took notice to us anxiously anticipating the baby to wake up and play with us, and walked over to her, declaring what a shame it was that she was sleeping. She then decided to gently poke her, checking that her tubes and wires were all in place properly, wink, wink. I can't help but giggle, because it worked. Little Bird's eyes sprung opened, and then subsequently crossed in a brilliant what-the-hell moment I wish I could have captured on film. "Oh look! She's up! Wanna play with her?". You bet we did! Yes, I know, we are baby waker-uppers. But, we missed her! I consider it a preemptive strike for those inevitable middle-of-the-night play dates she'll spring on us in the near future.
 |
| Hey! I Know You! |
 |
| Hypnotized By The Shiny Box Again |
 |
| She Looks Innocent, But She's A Trouble Maker! |
 |
| "It Wasn't Me, Mom! I Not Fibbin'!" |
 |
| She's Not Conceited, She's Convinced! |
 |
| Her & Her Partner In Crime |
 |
| Conspiring Against The Staff |
 |
| Saluting The Masses |
 |
| "How Do Ya Like Dem Apples?!?!" |
 |
| "Come At Me, Bro!" |
 |
| "I Don't Think These Mitts Are Funny!" |
 |
| "C'mon, Mom! Take Them Off!" |
 |
| "I Promise I'll Be A Good Girl!" |
The second one is actually from a previous visit with her. I know, I know, it's just her snoozing. But, remember how I told you about her learning how manipulate her trach to make sounds? She was so comfortable that she did this in her sleep. Her not having her true voice isn't something I will ever get used to. But her being able to make these darling tones is something we cherish every single time she does. If you ever find yourself awake in the middle of the night and unable to rest, just come here and replay this clip. Watching it is so relaxing, at least to me, that I just want to crawl in that crib with her and close my eyes, too. I think I need a nap, now. Enjoy!
share on: facebook
Thursday, December 15, 2011
The Little Things....
When we arrived at the hospital yesterday, MFH and I were supposed to go to admissions and finish some stray paperwork for Little Bird. We were planning on swinging by the office on our way out. AKA, we had no friggin' idea where it was yet and needed directions. But as it turned out, we didn't have to even ask. Not long after we settled in with the baby did a clerk come to our room to help us. I'm mentioning this because it was just the most pleasant hour spent with her, even though the forms only took five minutes to complete. She had everything ready for us in the moment that she walked in. And having had already seen a great deal of Little Bird's personal information, she presented us with a very endearing and hand-made gift she created for our baby. A little, white, bell-shaped ornament for our Christmas tree. Little Bird's very first one. So unexpected, and so thoughtful! She sat with us for a while, just talking and listening to Little Bird's story. I can't tell you how much of a gift meeting her has been. After spending over five months in the hospital, to have and know people who take the time out of their day to put a smile on your face? It's like a hug from an old friend.
Little Bird pulled through the second scope with flying colors. Before the procedure, MFH & I were asked to consent to propofol as a precaution. They were going to attempt the procedure with her sedated, but in the event that she couldn't tolerate it, the fastest way to put her under would be this drug. When used properly and by an educated anesthesiologist, it is fairly safe. Still, it's worrisome when it's being used on your nine and a half pound baby.
But, like the amazing Little Bird that she is, she remained calm throughout, with the exception of her becoming scared at the very end when the camera was coming out. The doctors were able to get an incredible look at her lungs and airway. And I can very happily say that her prognosis isn't any worse. They did find evidence that her airway had collapsed sometime between having the tracheostomy and being admitted into the PICU. However, it is healing, and now very stabile. An enormous relief to hear, this means she has a shot at decannulation. But they've decided that it's best to give her the winter months to grow and become even stronger before attempting to ween her off of the vent. Her lungs are still very severely scarred. But her pulmonologist tells us that he has every hope in the world that, come this spring, she should be able to breathe on her own. To hear those words from this specialist's mouth felt like we hit the lottery. It really is the little things.
MFH and I expected her to be pretty miserable afterward, though, she was anything but. She did have a slight temperature, and required a bit more suctioning than usual, but considering everything? She was so brave. She tolerated a trach change and a bath, as well as bottle feedings almost immediately afterward. For the first time since her birth, I was able to feed my daughter last night. It. Was. Precious. She signaled that she was hungry well before her scheduled feed, and so we got comfy and had at it. She ate like a tiny champion, taking the bottle with gusto. That was, until Daddy began making silly faces at her and she decided that playing was far more important in the moment. But, she took almost half an ounce before becoming distracted. I can say with all honesty that even if it takes her an hour to finish a feeding, it is such a wonderful way to spend sixty minutes. I don't think I will ever grow tired of spending that kind of time with her.
Aside from her snoozing in my arms for a half hour, the rest of her day was spent wide awake and being soooo playful. She did have some medication during the scope that caused her to experience tachycardia, with her machine almost constantly alerting. But this isn't uncommon or unexpected, and it wasn't anything serious. Actually, she found it quite amusing that the monitors would beep and half the staff would run into her room. I think she just likes to psyche the nurses out. She's definitely been keeping them on their toes!
Our plans for the next several weeks will be to bulk this little lady up as much as we possibly can. Today, she began a regimen of breathing treatments and medications aimed at increasing her lung function in preparation for when the big day finally arrives. She is already showing some serious improvement from this. For the first time since...ever, she withstood three major vent pressure setting change trials this afternoon. Only three days ago, she couldn't handle these adjustments, at all. I'm also keeping my promise to her. The deal I made with her months ago. I remind her every day that as soon as she gives that breathing tube back, she can have a puppy, and even pick it out herself. Looks like she really, really wants that pet!
I have to keep it in the back of my head, the truth that an attempt is not a promise. Even months from now might be too soon. But knowing that there's one person in this sea of white coats who thinks it's worth a shot means so much to us. If she does happen to make that leap and leave the ventilator behind, for good? It will be awesome. If she can't? We will still have hope. Hope that if she's able to at least try, then she will eventually succeed.
share on: facebook
Little Bird pulled through the second scope with flying colors. Before the procedure, MFH & I were asked to consent to propofol as a precaution. They were going to attempt the procedure with her sedated, but in the event that she couldn't tolerate it, the fastest way to put her under would be this drug. When used properly and by an educated anesthesiologist, it is fairly safe. Still, it's worrisome when it's being used on your nine and a half pound baby.
But, like the amazing Little Bird that she is, she remained calm throughout, with the exception of her becoming scared at the very end when the camera was coming out. The doctors were able to get an incredible look at her lungs and airway. And I can very happily say that her prognosis isn't any worse. They did find evidence that her airway had collapsed sometime between having the tracheostomy and being admitted into the PICU. However, it is healing, and now very stabile. An enormous relief to hear, this means she has a shot at decannulation. But they've decided that it's best to give her the winter months to grow and become even stronger before attempting to ween her off of the vent. Her lungs are still very severely scarred. But her pulmonologist tells us that he has every hope in the world that, come this spring, she should be able to breathe on her own. To hear those words from this specialist's mouth felt like we hit the lottery. It really is the little things.
 |
| Chillin' After The Scope |
 |
| Telling Us How Brave She Was |
 |
| "There Was Nothin' To It!" |
 |
| Comfy and Happy! |
 |
| Considering The Idea Of A Puppy |
 |
| Big Yawns, and Tiny Bows! |
 |
| Gettin' Some Momma Love.... |
 |
| "When I Make This Face, I Get Kisses!" |
 |
| Look At How Big She's Getting! |
 |
| "Daddy, I Made You A Present!" |
 |
| "You Talkin' To Me?" |
 |
| "Dad, You're Bananas!" |
 |
| "But You're Soooo Funny!!!" |
 |
| "You Crack Me Up!" |
 |
| "You Tell The Best Stories!" |
 |
| "I Think I Pee'd My Pants!" |
 |
| "Whoa!" |
 |
| I LOVE THIS FACE! |
 |
| "That Was Intense!" |
 |
| "For Real Real!" |
MFH and I expected her to be pretty miserable afterward, though, she was anything but. She did have a slight temperature, and required a bit more suctioning than usual, but considering everything? She was so brave. She tolerated a trach change and a bath, as well as bottle feedings almost immediately afterward. For the first time since her birth, I was able to feed my daughter last night. It. Was. Precious. She signaled that she was hungry well before her scheduled feed, and so we got comfy and had at it. She ate like a tiny champion, taking the bottle with gusto. That was, until Daddy began making silly faces at her and she decided that playing was far more important in the moment. But, she took almost half an ounce before becoming distracted. I can say with all honesty that even if it takes her an hour to finish a feeding, it is such a wonderful way to spend sixty minutes. I don't think I will ever grow tired of spending that kind of time with her.
Aside from her snoozing in my arms for a half hour, the rest of her day was spent wide awake and being soooo playful. She did have some medication during the scope that caused her to experience tachycardia, with her machine almost constantly alerting. But this isn't uncommon or unexpected, and it wasn't anything serious. Actually, she found it quite amusing that the monitors would beep and half the staff would run into her room. I think she just likes to psyche the nurses out. She's definitely been keeping them on their toes!
Our plans for the next several weeks will be to bulk this little lady up as much as we possibly can. Today, she began a regimen of breathing treatments and medications aimed at increasing her lung function in preparation for when the big day finally arrives. She is already showing some serious improvement from this. For the first time since...ever, she withstood three major vent pressure setting change trials this afternoon. Only three days ago, she couldn't handle these adjustments, at all. I'm also keeping my promise to her. The deal I made with her months ago. I remind her every day that as soon as she gives that breathing tube back, she can have a puppy, and even pick it out herself. Looks like she really, really wants that pet!
I have to keep it in the back of my head, the truth that an attempt is not a promise. Even months from now might be too soon. But knowing that there's one person in this sea of white coats who thinks it's worth a shot means so much to us. If she does happen to make that leap and leave the ventilator behind, for good? It will be awesome. If she can't? We will still have hope. Hope that if she's able to at least try, then she will eventually succeed.
share on: facebook
Subscribe to:
Posts (Atom)