They say that if you want to get a baby out when you're full term, there are a variety of methods to get the job done. There's the popular wives' tale that spicy foods will do the trick. And considering how many babies seem to sprout in the great state of Utah, I'm constantly surprised that the Mexican restaurants of the valley don't have specials or discounts for full term mommies. It would be a goldmine of epic proportions if you offered a near birthing mother a 2-for-1 deal on spicy chile verde enchiladas. Others prescribe to the physical activity approach. My mother-in-law was so desperate to get her labor kickstarted with Elisa that she shoveled snow for half of the neighborhood. I've also heard of soon-to-be mothers going for a hike, up in altitude, or power walking at malls to get the contractions started. More new age friends would say that massage, pedicures, or acupuncture could do the trick - that is, if you have the desire to have someone needle you (both literally and figuratively). I've found that by this point in pregnancy, the father is best positioned to be just outside of a good right hook from the wife. Thoughts of a friendly massage are met with disdain and eye rolling. And then, it seems the most sure method is what got you into this mess in the first place. Have some good, old fashioned sex. Just enjoy the irony that the thing that caused the pregnancy is well known to magically get the end going as well. Recent surveys show that 9 out of 10 men (yet -3 out of 10 women) think this is the best and most prudent approach.
But, as with everything, Elisa and I tended to not follow the typical methods. Elisa was ready, and as we were 11 days before our official due date, I could see her considering long hikes or power walking (somehow, that last method didn't seem to come up). In fact, the day before we headed up to Park City to see if that could get the process going. It didn't. December 17, 2006 was a snowy day, so we decided to go to a movie (Charlotte's Web) and then hang out at home. After the movie, we decided to get some house tasks done. And who would have ever considered that something like a menial task was going to kick start this party. Around dinner time, Elisa and I commenced our never ending conversation of "What do you want?", "I don't know, what do you want?" regarding dinner. Elisa, always the overachiever, decided to multitask and sat on our office floor filing bills. We were just getting to the good part ("okay, I'll give you three options and you choose!") of our argument about sustenance when the bill filing did the trick. Elisa's expression changed midsentence. And in a way that you'd only dream of remembering fondly, Elisa dropped a "OK, either my water just broke or I peed my pants!" I'll skip the part where I started grilling her for assurance that this wasn't a loss of bladder control. Let's just say that in a matter of minutes, I was confident that the water had indeed broken. Our first little boy decided that it was time to grace the world.
If getting pregnant proved to be more frustrating and time consuming than I had expected, our first pregnancy took the award for scariest. We should have known that this wouldn't be the smoothest ride in the world, considering our travails with good old Clomid, but the degrees of fear and worry weren't anything we could truly prepare for. No, we were first time parents, following the basic outline of "What to Expect When You're Expecting". We strayed away from the section entitled "when something isn't right". But early on, things seemed to be progressing like everyone around us had predicted. First, was the nausea. I thought I was prepared for Elisa to have morning sickness. What I didn't expect was the violent changes in taste from minute to minute. One lovely day, I made the mistake of asking Elisa what she wanted for lunch. It would have been one thing had she just told me that she wasn't hungry. No, we had to go on the great expedition to find what would work for Elisa's stomach. We started simple. Cereal. That was a non-starter. But she didn't decide that until I'd brought it to the bedroom (husband of the year, right here! Lunch in bed!). We moved onto a sandwich and chips. She tried a chip. She verbally assaulted the sandwich. Back to the drawing board. We had some leftover italian. Negative. Then she thought that macaroni and cheese would be good. Out came the box of Kraft (it's the cheesiest!). 20 minutes later, Elisa had a bowl in front of her. Well, at least for 2 minutes. Then, it was back in the kitchen. After a few more failed attempts, I told Elisa that I'd make her a fried egg. Before I got back to the kitchen, I sat on our stairs with my head in my hands. Never before had cooking been so maddening. And I couldn't get mad at her. So I blamed the baby. Hey, I didn't know him/her yet! That day, Elisa ate. Well, she ended up eating the egg white of the fried egg. Imagine my delight when I came up to find a single egg yolk on a plate. Hey, whatever works.
I wish I could write about more meaningless stories like the search for food palatable to Elisa's belly. But that was like the happy peak of our 1st trimester. Because other "fun" would start soon. And by fun, I mean not fun. The "fun" began on May 9, 2006. It was a normal day, or seemed to be until we arrived into the late evening. I was sitting in our office, surfing the internet (Elisa did the bill filing...clearly). Elisa had gone to the bathroom. It wasn't that she said my name. It was how she said it. Tinged with fear. I walked into the bedroom and Elisa told me that she was bleeding. Keep in mind, we were first time parents. There isn't a planning book that tells you to be ready for this pregnancy symptom. Bleeding at any point of pregnancy isn't considered normal. It's potentially problematic. I picked up the phone (of course, it was an evening!) and called the nurse hotline that our OBGYN had given us. I explained to her what was happening. She quickly told me to take Elisa to the emergency room. And she ended the call in a chilling (albeit sympathetic way). As I write this, I'm not even sure I ever told Elisa about this. But if I stopped with details, I'd start violating my pledge of supreme honesty, right? Luckily, I don't think this lack of sharing will result in a night on the couch. There was just absolutely no way I was going to share it with Elisa in the moment After saying we should head to the emergency, the nurse finished with "I'm soooo sorry". Again, it wasn't the words. It's the way she said them. In the nurse's mind, our first pregnancy was well on it's way to ending. She believed it. And for the first time, I was truly scared.
We headed to the St. Mark's emergency room, checked in, and waited. By the time we had gotten there, it was around 9:30pm. By the time we were checked in and had received an initial visit (where we discovered that the nurse was someone Elisa had previously dated...I would have tried to trip him to establish my superiority but he was carrying vials of her blood. I resisted), it was nearly midnight. We were sent to a room with an ultrasound machine. I was afraid of what we'd see (or not see). The tech fired up the machine and I could feel myself brace for the worse. The phone nurse's "I'm sooo sorry" kept replaying in my mind. We saw the sac. We say the baby. And we saw a flicker. 6 weeks into our 1st pregnancy, Elisa and I were sitting in the St. Mark's emergency room, watching our baby's heartbeat on screen. Elisa was relieved. I was a little shellshocked. And then I glanced at the clock and realized that we had switched days. It was 12:10am. On May 10, 2006. Our 3rd wedding anniversary started by seeing our baby for the 1st time on ultrasound.
We went home with the instructions to see Elisa's OBGYN the next day. And when we headed in, Elisa was still bleeding. The OBGYN was concerned, but happy to hear that we had seen a heartbeat. In we went to his ultrasound room and we got our second view of the little bean. Sure enough, the heart was still beating. The baby seemed strong. The bleeding continued to be unexplained. We went home with the instructions of watching the bleeding, and to only be concerned and come back if the bleeding got worse. Sadly, it got worse. I remember living in a sense of fear. Every time she would go to the bathroom, I'd sit and worry. I'd fear the news. At work, I'd await texts and would ask annoying questions about how it compared to an hour before. But when we knew that the bleeding had gotten markedly worse, we were ushered back into the OBGYN's office. And the second true stab of fear walloped me in the face. I found my humanity towards my baby.
We moved into a new ultrasound room and were greeted by a worried doctor. True to our past experiences, Elisa got a physical examination. As the doctor finished that portion, he warned us of what the ultrasound might show us. He believed he saw "membrane" on Elisa's cervix (which had to be a sign of impending miscarriage). Elisa tensed and I could see the fear rise in her. Back to the ultrasound. Back to wondering what the image would hold. Breathless waiting. My eyes shifted from Elisa to the screen to the doctor. Our OBGYN's first word was "good". I figured that would not make it into the vocabulary if we were going to be met with bad news. Sure enough, we saw more flickering on screen. The baby continued to look strong. Our OBGYN seemed perplexed at the physical examination. When we saw the heartbeat, Elisa broke down. I stayed strong. Until the OBGYN left. And Elisa handed me the picture of our little baby. Free of anyone else in the room, and with Elisa having collected herself, I broke down. I'll say again that I'm not a big crier. But I couldn't help it. The fear over the last few days had built up inside of me. And I realized that getting a positive pregnancy test was much more than the peed on stick. There was a life...sadly, with my DNA...but a life nonetheless.
Elisa continued to bleed through the 1st trimester. We had more ultrasounds than I would care to remember. But we came out of the 1st trimester as well, more grateful than I ever expected to be. I remember, as we celebrated the 2nd trimester, thinking that people experienced this transition every day and didn't even realize how lucky they were to actually be here. And my feeling was entirely based off of fear. It would take another 6 weeks before we started to get an idea of why Elisa had bled so heavily during the 6-8 week period especially. During our "official" ultrasound, where we found out that we would be having a little boy, we were told that there appeared to be an extra sac. The explanation was that we most likely had a twin in there that had miscarried very early on. That explained the bleeding and the OBGYN's worry at the membrane during the physical examination. Again, I felt lucky to be staring at images of our little man. It could have turned out differently. I was supremely happy to not have to live through that horror.
To be fair, the rest of our pregnancy with our little man was more or less uneventful. We started with a list of 32 names that we narrowed down to 20, then to 15, and then to 10. We sat on a group of about 5 names for the majority of the summer, only to agree spontaneously as we drove back to Salt Lake City from Fish Lake in August. We prepared our home, had numerous baby showers, and generally tried to get used to the fact that we would soon have a baby in our presence. But as I stare back at the events of Lukas - of struggling to understand potential loss (and loss 10 weeks after it had happened), I realize that these were all little steps in our path to Sam. Little did I know that our lessons were only getting underway.
In the meantime, we were good little boy scouts, practicing the tried and true motto of "be prepared". And when we were finally ready, finally prepared to meet our child, we did what any focused and educated parents-to-be would do. We started trying sure methods of getting that labor going. We filed bills. And it worked like a charm.
Here came baby #1. Here came Lukas.
Thursday, October 31, 2013
Saturday, October 26, 2013
Saving Sam (Chapter 3.07): Prologue - Not enough dominoes
I felt her stir before I heard anything. After all, we were in a queen bed at the time, and Elisa had a tendency to curl right next to me...you know, so that I was on the very edge of the bed, holding on for dear life. She had rolled away and I heard her feet hit the floor. It must have been 4:30am. That's right. For the previous year plus of our marriage, my wife had risen from the dead of sleep to go and exercise. I supported her by quietly celebrating that I had about an hour more sleep before I'd have to get up to go to work. This morning was like any other. Elisa got ready, headed downstairs to exercise. I'd blissfully roll over, ready to get a couple more winks of sleep before the inevitable day would begin. When she'd come up after an hour of working out, I would usually be lucky if I even heard her. I had to set a quick alarm when I did so that I could perfectly time my entrance into the bathroom. I'd desperately try to get a few more minutes of sleep in the darkness of the bedroom. These days, however, I didn't return to sleep so quickly. I had a new routine...a waiting routine. First, I'd hear her turn on the sink. I'd always think that I could hear the ripping of plastic. I often wondered if I was just making that part up in my mind. It would get quiet...
Each day, the same thing happened next. Silence, followed by the sounds of Elisa opening the garbage can, turning on the shower, and then entering it. 8 minutes later, I'd be roused from bed to trade her places while she got ready. I didn't need to ask. I already knew the answer. It was a no. It was always a no. I feared it would never happen. This morning, however, I knew it would be different. Well, I certainly was hopeful. I laid in the dark, still listening. Faucet? Check. Ripping plastic? Yep. Silence? About 3 minutes worth. And then...no shower. No garbage. The bathroom door opened, bathing the bedroom and my tired eyes in soft white light.
The prospect of starting a family beyond Elisa and I was a daunting proposal. For me, especially. In fact, early in marriage, I thought I was brilliant. When Elisa inquired as to when we would be starting a family (not that she was rushing...more curious than anything), I made a laundry list of the things that would have to happen before we'd even turn to the baby discussion. First, we needed at least two dogs. I had to be convinced that beyond plants and inanimate objects, I could keep something alive...well, something more substantial than a cactus that needed to be watered once a year. One dog wouldn't be enough, either. We would have two. And we'd get them trained. That would take some time. I then looked to our vehicles. When we were married, Elisa was driving a 1994 Toyota Corolla. I was cruising around Salt Lake in a 1993 Dodge Shadow. I loved that car, and Elisa questioned why every day. It was a stick shift. It didn't have air conditioning. The idea of any "power" features was laughable...it might have had power windows (yet, as I mentioned the old car while writing this, as if knowing what I was saying, she said "no power windows and one of the manual handles was broken"). I lived the dream. But these were not family cars. They were college kid cars. So we'd need to replace the cars. Both of them, in fact. I turned my attention to school. I was still in a Masters program and Elisa was knee deep in her Bachelor's Program. Yeah, we'd have to finish school. No nighttime feedings when we were trying to battle through finals. And just in case these dominoes fell too rapidly, my ace in the hole was my last demand. We had to be in a house. No apartment living. No 2-bedroom apartment where the kid has to go up a flight of stairs to get home.
I had stacked so many "to do" items in front of us, I was convinced it would be a long time before I'd have to face the true reason why I was hesitant. I always tell people that the reason Elisa and I are 3.5 years apart (I'm older) is because this age separation resulted in a matching of maturity levels. On the outside, I wanted to be prepared. On the inside, I was terrified of being a parent and felt I was too immature to take that task on. I have a feeling Elisa wouldn't disagree. We would fight about some of my behaviors while we were newly married. She looked poorly on me coming home from a day of work and school (at 10:00pm), and firing up a video game until 2:00am. Apparently, I was unaware that ignoring my wife for some gaming was an inappropriate choice during the first year of marriage. We also had a tendency to have wars in the apartment. Water fights. Wrestling matches. Me tossing Elisa over my head and into the sliding glass doors. Memories, I tell you. I'm also reminded of the night that I had prepared a full meal of pork chops, macaroni and cheese, and peas. Elisa and I ended up fighting, which caused her to not eat, me to not eat, and me to toss the entire lot of food into the disposal. Boy, was I grown up! But, I told myself as I crashed each night, my immaturity could, well, mature. I had my laundry list, after all. We had time.
Elisa and I were married on May 10, 2003. So our marriage and path to that pivotal moment catalogued above. By the middle of June 2003, we had added our first baby. A little black pug named Maggie. We spent the summer getting her settled and potty trained. Maggie's arrival caused a bit of an inconvenience, though...one that I was unaware would throw a huge wrench into my "long term" delay plans. We were informed by the apartment company that we were in a "no dogs" apartment of the complex. Despite being told the contrary, we were faced with the prospect of moving. So we moved three buildings over (sadly, moving is a similar pain in the rear) just a few months into our marriage. I was quickly tiring of the apartment complex and felt they hadn't been quite honest. And then came the dropping of interest rates. Apartment living was already old, I had just gotten a promotion at work, and Elisa was already thriving at Red Butte (yep, she was working there a year before we got married...that's loyalty!). It was time to get a house. So we went searching and on November 1, 2003, we headed out of our apartment and into our first home in Draper, Utah.
In my mind, I ignored the fact that one of my biggest "baby delay" trump cards was gone. I had so much more in front of me as a protective barrier. School. Cars. Another dog. I was safe. So I thought. That safety lasted a grand total of three months. By February, Elisa and I were realizing that the car situation needed to improve. We sold Elisa's car and upgraded to a 2004 Toyota Corolla. May 2004 brought forth college graduation...for both of us. Suddenly, at our 1st anniversary, we had a home, a new car, a new dog, and had graduated. Uh oh. I didn't help matters that June, when we went to look at another pug on a whim. Elisa was fine going to see, but she didn't want another dog yet. And then I saw little Molly. She had a single white paw on her black body. And she was clearly being abused. She crawled into my lap and wouldn't leave. She crawled onto my shoulder and curled up. I couldn't leave her. I needed to have her. Against Elisa's wishes, we added dog #2 about a year after the first one joined our family. You probably wouldn't be surprised that Elisa made me get rid of the Dodge Shadow later that year - and that was the impetus for the moment I thought I might be getting ready.
After Elisa had gloated that we had sold her Corolla for thousands and I got more "benefit" donating the Shadow to Kidney Kars than I would actually would have through selling it, Elisa and I headed down to get a new car. We found what we wanted and bought a new Toyota Camry. After, we stopped at the Olive Garden downtown to grab some dinner. As we sat, waiting for our food to arrive, I found myself glancing over to a family of four. It wasn't that I was suddenly picturing Elisa and I in a Hallmark card and pleaded with her to start a family. It was that the couple had two cute boys, perfectly behaved. They sat, waiting for their food, with their hands in their laps. I looked at Elisa, and she had seen the boys too. It launched us into a conversation, not of starting the family or how many children we wanted. No, we talked about our commitment to have kids like those two adorable little ones in Olive Garden. Behaved. Well mannered. Not Rosemary's baby.
In the next days leading up to Christmas, Elisa and I were starting to realize that the dominoes had fallen in quicker succession than I had ever planned. But I was out of my protective "requirements". And Elisa was clearly heading into potential baby mode. It was time to start. I settled myself to sleep at night knowing that once we got pregnant, I'd have 9 more months to get more mature. Or, at least I hoped I could buy it on eBay. Someone had to have a surplus of it, and I wasn't going to ask Elisa...I might have been mature, but I wasn't crazy.
I wish I could say that Elisa and decided to start and that we were pregnant within months. But my commitment through Sam's story is to stop from sugarcoating. If anything, the experience with Sam has taught me that glossing over details, and painting a rosy story actually minimizes the experience. It doesn't allow you to understand, learn from, and embrace what you have. No, those lessons are in the hardship. The reality. Life, it seems, is full of reality. And for Elisa and me, trying to have a baby was reality. Lots of hardship, not so much sugarcoating.
Don't get me wrong. I know that so many couples have difficulties that extend far beyond what Elisa and I experienced. Sadly, wonderful couples that would be wonderful parents struggle to the point of giving up. Elisa and I did not have that kind of experience. But we needed help. And we spent many a months going through way too many pregnancy tests to no avail. In fact, Elisa and I spent the greater part of a year trying to get pregnant. Month in and month out, the results were the same. One line on the pregnancy strip. Disappointment. A slight feeling of hopelessness. Interestingly, it took one of Elisa's signature sinus infections to start turning our fortunes. I had gone in with her to a new general practitioner and before the doctor prescribed medication, he asked her if there was a chance she was pregnant. She expressed that we had been trying, he gave her a test, and it was negative. No, we didn't have a miracle in the office. Instead, the GP pointed out some signs that we possibly needed more help, and offered a referral to an OBGYN down the hall.
Since we were already at the point of frustration, we took a chance and made an appointment. We walked into an incredibly supportive doctor's office - someone that seemed focused to help us. We did the regular tests to make sure everything seemed to be in working order (it was), except we realized that we needed more support at regulating the egg release process. So we left the office with a prescription in hand for a drug called Clomid. We also spent way too much money on the internet buying fertility strips and early detection pregnancy tests. The hope was that the Clomid would schedule things to a degree that we could better focus our...ahem...efforts. The results were a bit unexpected.
Clomid may be a wonder drug of the fertility world, but it had two very strange and unpleasant reactions. First, it did the hormone trip of the lifetime for Elisa. Usually, when you start a drug, you're hoping that you avoid the side effects with the reality that you could have one. Elisa, on the other hand, decided to try all of the side effects out. Nausea, vision problems, hot flashes, headaches, blurry vision, irritability, and the mood swing that would make a grown man curl up into the fetal position when in the woman's presence. Trust me on the last one...let's just say I got mighty comfortable pulling my knees into my chest and rocking back and forth, whispering "make the bad girl stop!" Even more fun, Elisa was overjoyed to experience a litany of ovarian cysts, causing trips to the doctor, to get ultrasounds, and offering her the opportunity to try out that fetal position. Yes, we'd lay on the bed next to each other, all wrapped up in fetal position, hoping we'd get pregnant. Enjoy the irony.
The second unexpected result of Clomid is what I like to call the "meat processing" experience. Now, I'm a guy. I happen to enjoy...you know...guy things. My wife would probably say that I excel at the "well, that was fun! *SNORE" approach, but I'd never say no to a good time. But in the world of fertility strips, your wife changes from a loving partner to a drill sergeant. I was honestly fearful of my life if I somehow said no when Elisa commanded me to enter the bedroom and perform. The pressure. The constant schedule. The stage fright! Clomid would be ingested. Elisa would go Incredibly Hulk. I'd go fetal. She'd order me to be a dutiful husband. She's lift her hips. And I'd go back to the fetal position. By the end of the third month, I was ready to be done with the wonder drug. Good grief, Daddy doesn't like being in a meat processor! Now, just step back and take that in. A guy. Fearful of his wife. And wanting a night off. Yes, these were serious times.
And after three more months of firing blanks, another thought had started creeping into my head. Maybe it wouldn't work. Perhaps we'd have to start investing even more money in tests and specialists. Maybe we'd never get pregnant. Yet, every morning, I'd hear Elisa come back into the bedroom after exercising. I'd hear the bathroom door closed. I'd hear the sink. The ripping of plastic. And then would sit in the silence, knowing that the start of the shower signified another negative test. Another sad morning. Another month of the Clomid monster. In late March 2006, I laid in bed, waiting for the shower to turn on. Color me surprised when the bedroom door opened and my tired eyes were bathed in that soft white light from the bathroom.
The test was positive. We were going to have a baby.
Each day, the same thing happened next. Silence, followed by the sounds of Elisa opening the garbage can, turning on the shower, and then entering it. 8 minutes later, I'd be roused from bed to trade her places while she got ready. I didn't need to ask. I already knew the answer. It was a no. It was always a no. I feared it would never happen. This morning, however, I knew it would be different. Well, I certainly was hopeful. I laid in the dark, still listening. Faucet? Check. Ripping plastic? Yep. Silence? About 3 minutes worth. And then...no shower. No garbage. The bathroom door opened, bathing the bedroom and my tired eyes in soft white light.
The prospect of starting a family beyond Elisa and I was a daunting proposal. For me, especially. In fact, early in marriage, I thought I was brilliant. When Elisa inquired as to when we would be starting a family (not that she was rushing...more curious than anything), I made a laundry list of the things that would have to happen before we'd even turn to the baby discussion. First, we needed at least two dogs. I had to be convinced that beyond plants and inanimate objects, I could keep something alive...well, something more substantial than a cactus that needed to be watered once a year. One dog wouldn't be enough, either. We would have two. And we'd get them trained. That would take some time. I then looked to our vehicles. When we were married, Elisa was driving a 1994 Toyota Corolla. I was cruising around Salt Lake in a 1993 Dodge Shadow. I loved that car, and Elisa questioned why every day. It was a stick shift. It didn't have air conditioning. The idea of any "power" features was laughable...it might have had power windows (yet, as I mentioned the old car while writing this, as if knowing what I was saying, she said "no power windows and one of the manual handles was broken"). I lived the dream. But these were not family cars. They were college kid cars. So we'd need to replace the cars. Both of them, in fact. I turned my attention to school. I was still in a Masters program and Elisa was knee deep in her Bachelor's Program. Yeah, we'd have to finish school. No nighttime feedings when we were trying to battle through finals. And just in case these dominoes fell too rapidly, my ace in the hole was my last demand. We had to be in a house. No apartment living. No 2-bedroom apartment where the kid has to go up a flight of stairs to get home.
I had stacked so many "to do" items in front of us, I was convinced it would be a long time before I'd have to face the true reason why I was hesitant. I always tell people that the reason Elisa and I are 3.5 years apart (I'm older) is because this age separation resulted in a matching of maturity levels. On the outside, I wanted to be prepared. On the inside, I was terrified of being a parent and felt I was too immature to take that task on. I have a feeling Elisa wouldn't disagree. We would fight about some of my behaviors while we were newly married. She looked poorly on me coming home from a day of work and school (at 10:00pm), and firing up a video game until 2:00am. Apparently, I was unaware that ignoring my wife for some gaming was an inappropriate choice during the first year of marriage. We also had a tendency to have wars in the apartment. Water fights. Wrestling matches. Me tossing Elisa over my head and into the sliding glass doors. Memories, I tell you. I'm also reminded of the night that I had prepared a full meal of pork chops, macaroni and cheese, and peas. Elisa and I ended up fighting, which caused her to not eat, me to not eat, and me to toss the entire lot of food into the disposal. Boy, was I grown up! But, I told myself as I crashed each night, my immaturity could, well, mature. I had my laundry list, after all. We had time.
Elisa and I were married on May 10, 2003. So our marriage and path to that pivotal moment catalogued above. By the middle of June 2003, we had added our first baby. A little black pug named Maggie. We spent the summer getting her settled and potty trained. Maggie's arrival caused a bit of an inconvenience, though...one that I was unaware would throw a huge wrench into my "long term" delay plans. We were informed by the apartment company that we were in a "no dogs" apartment of the complex. Despite being told the contrary, we were faced with the prospect of moving. So we moved three buildings over (sadly, moving is a similar pain in the rear) just a few months into our marriage. I was quickly tiring of the apartment complex and felt they hadn't been quite honest. And then came the dropping of interest rates. Apartment living was already old, I had just gotten a promotion at work, and Elisa was already thriving at Red Butte (yep, she was working there a year before we got married...that's loyalty!). It was time to get a house. So we went searching and on November 1, 2003, we headed out of our apartment and into our first home in Draper, Utah.
In my mind, I ignored the fact that one of my biggest "baby delay" trump cards was gone. I had so much more in front of me as a protective barrier. School. Cars. Another dog. I was safe. So I thought. That safety lasted a grand total of three months. By February, Elisa and I were realizing that the car situation needed to improve. We sold Elisa's car and upgraded to a 2004 Toyota Corolla. May 2004 brought forth college graduation...for both of us. Suddenly, at our 1st anniversary, we had a home, a new car, a new dog, and had graduated. Uh oh. I didn't help matters that June, when we went to look at another pug on a whim. Elisa was fine going to see, but she didn't want another dog yet. And then I saw little Molly. She had a single white paw on her black body. And she was clearly being abused. She crawled into my lap and wouldn't leave. She crawled onto my shoulder and curled up. I couldn't leave her. I needed to have her. Against Elisa's wishes, we added dog #2 about a year after the first one joined our family. You probably wouldn't be surprised that Elisa made me get rid of the Dodge Shadow later that year - and that was the impetus for the moment I thought I might be getting ready.
After Elisa had gloated that we had sold her Corolla for thousands and I got more "benefit" donating the Shadow to Kidney Kars than I would actually would have through selling it, Elisa and I headed down to get a new car. We found what we wanted and bought a new Toyota Camry. After, we stopped at the Olive Garden downtown to grab some dinner. As we sat, waiting for our food to arrive, I found myself glancing over to a family of four. It wasn't that I was suddenly picturing Elisa and I in a Hallmark card and pleaded with her to start a family. It was that the couple had two cute boys, perfectly behaved. They sat, waiting for their food, with their hands in their laps. I looked at Elisa, and she had seen the boys too. It launched us into a conversation, not of starting the family or how many children we wanted. No, we talked about our commitment to have kids like those two adorable little ones in Olive Garden. Behaved. Well mannered. Not Rosemary's baby.
In the next days leading up to Christmas, Elisa and I were starting to realize that the dominoes had fallen in quicker succession than I had ever planned. But I was out of my protective "requirements". And Elisa was clearly heading into potential baby mode. It was time to start. I settled myself to sleep at night knowing that once we got pregnant, I'd have 9 more months to get more mature. Or, at least I hoped I could buy it on eBay. Someone had to have a surplus of it, and I wasn't going to ask Elisa...I might have been mature, but I wasn't crazy.
I wish I could say that Elisa and decided to start and that we were pregnant within months. But my commitment through Sam's story is to stop from sugarcoating. If anything, the experience with Sam has taught me that glossing over details, and painting a rosy story actually minimizes the experience. It doesn't allow you to understand, learn from, and embrace what you have. No, those lessons are in the hardship. The reality. Life, it seems, is full of reality. And for Elisa and me, trying to have a baby was reality. Lots of hardship, not so much sugarcoating.
Don't get me wrong. I know that so many couples have difficulties that extend far beyond what Elisa and I experienced. Sadly, wonderful couples that would be wonderful parents struggle to the point of giving up. Elisa and I did not have that kind of experience. But we needed help. And we spent many a months going through way too many pregnancy tests to no avail. In fact, Elisa and I spent the greater part of a year trying to get pregnant. Month in and month out, the results were the same. One line on the pregnancy strip. Disappointment. A slight feeling of hopelessness. Interestingly, it took one of Elisa's signature sinus infections to start turning our fortunes. I had gone in with her to a new general practitioner and before the doctor prescribed medication, he asked her if there was a chance she was pregnant. She expressed that we had been trying, he gave her a test, and it was negative. No, we didn't have a miracle in the office. Instead, the GP pointed out some signs that we possibly needed more help, and offered a referral to an OBGYN down the hall.
Since we were already at the point of frustration, we took a chance and made an appointment. We walked into an incredibly supportive doctor's office - someone that seemed focused to help us. We did the regular tests to make sure everything seemed to be in working order (it was), except we realized that we needed more support at regulating the egg release process. So we left the office with a prescription in hand for a drug called Clomid. We also spent way too much money on the internet buying fertility strips and early detection pregnancy tests. The hope was that the Clomid would schedule things to a degree that we could better focus our...ahem...efforts. The results were a bit unexpected.
Clomid may be a wonder drug of the fertility world, but it had two very strange and unpleasant reactions. First, it did the hormone trip of the lifetime for Elisa. Usually, when you start a drug, you're hoping that you avoid the side effects with the reality that you could have one. Elisa, on the other hand, decided to try all of the side effects out. Nausea, vision problems, hot flashes, headaches, blurry vision, irritability, and the mood swing that would make a grown man curl up into the fetal position when in the woman's presence. Trust me on the last one...let's just say I got mighty comfortable pulling my knees into my chest and rocking back and forth, whispering "make the bad girl stop!" Even more fun, Elisa was overjoyed to experience a litany of ovarian cysts, causing trips to the doctor, to get ultrasounds, and offering her the opportunity to try out that fetal position. Yes, we'd lay on the bed next to each other, all wrapped up in fetal position, hoping we'd get pregnant. Enjoy the irony.
The second unexpected result of Clomid is what I like to call the "meat processing" experience. Now, I'm a guy. I happen to enjoy...you know...guy things. My wife would probably say that I excel at the "well, that was fun! *SNORE" approach, but I'd never say no to a good time. But in the world of fertility strips, your wife changes from a loving partner to a drill sergeant. I was honestly fearful of my life if I somehow said no when Elisa commanded me to enter the bedroom and perform. The pressure. The constant schedule. The stage fright! Clomid would be ingested. Elisa would go Incredibly Hulk. I'd go fetal. She'd order me to be a dutiful husband. She's lift her hips. And I'd go back to the fetal position. By the end of the third month, I was ready to be done with the wonder drug. Good grief, Daddy doesn't like being in a meat processor! Now, just step back and take that in. A guy. Fearful of his wife. And wanting a night off. Yes, these were serious times.
And after three more months of firing blanks, another thought had started creeping into my head. Maybe it wouldn't work. Perhaps we'd have to start investing even more money in tests and specialists. Maybe we'd never get pregnant. Yet, every morning, I'd hear Elisa come back into the bedroom after exercising. I'd hear the bathroom door closed. I'd hear the sink. The ripping of plastic. And then would sit in the silence, knowing that the start of the shower signified another negative test. Another sad morning. Another month of the Clomid monster. In late March 2006, I laid in bed, waiting for the shower to turn on. Color me surprised when the bedroom door opened and my tired eyes were bathed in that soft white light from the bathroom.
The test was positive. We were going to have a baby.
Tuesday, October 22, 2013
Saving Sam (Chapter 3.06): Under pressure
I must admit that last night was a rough one. For the first time in 18 days, I had that overwhelming sense of dread. I think the last 2 1/2 weeks had been kind and cruel at the same time. On one hand, it was nice to not worry about the next set of news from a doctor, hospital, or nurse. We were free of the beeping, poking, prodding, and other invasive procedures. And wonderfully, we were at home, in our own bed, our own room, our own place. But it was cruel as well. Because our bodies and minds were left to themselves - to worry incessantly, sure, but without potential medical wallop like the special punch Dr. Doom had provided us just 3 weeks before. No, it was a safer place between Elisa, me, and Google. In the comfort (or discomfort) of our humble abode, we could search for truths on the internet and play doctor (sadly, not the kind that I would enjoy but would illicit an eye roll from Elisa) with Sam's medical condition. That false sense of security, however, was rocked with the Monday reality that we were heading towards another meeting with Dr. Day. And the similarities were disconcerting. Sure, we may have been home for 18 days this time (as opposed to 2 last time), but here we were, walking towards a Cardiology appointment after thinking things were getting better. Only this time, the lens and the expectations were quite different.
Leading up to today's appointment, you could see that we were trying to brace ourselves for a repeat performance of September 30th. Elisa asked me if we should pack a hospital bag in preparation. We arranged to have my Mom take the boys after school and plan on having them eat dinner at her house, all in the vein of preparation for the worst. I had warned my boss and employees of the appointment and that if I wasn't there on Wednesday, not to be surprised. Yes, we had started gearing ourselves up for another dose of Dr. Doom and an unexpected trek into some form of intensive care unit. Those around us probably felt pity but exasperation. Surely, Sam was thriving and we wouldn't be heading down this path again, right? But they patted our proverbial heads with understanding and told us good luck.
Sam's appointment was at 1:00pm, so we rushed around (I left work in preparation and Elisa spent her early afternoon letting Sam pee all over our couch and the floor...rookie!) getting prepared. I did feel like an old pro as we found parking near the Cardiology department, and then got sad that I knew the hospital well enough to know it's general layout. And we headed in. But we had work to do before Dr. Doom would grace us with his presence. First, we were sent to imaging for a couple snapshots with the x-ray machine. That included a self check-in, chatting with the administrative staff, and then finally getting the scans. Back we went to Cardiology. After a short sit down in the waiting room, we were escorted back to the Echocardiogram room. Sam got weighed, had a blood pressure check, and the tech performed the full scale echocardiogram. And then we were off to an examination room to soon be greeted by Dr. Day. We hadn't seen the doctor, and had already tallied almost 2 hours of Primary Children's fun.
First, a spot of good news. Sam's weight continues to be positive. It seems that we keep putting ourselves near an official medical scale every Tuesday, which is convenient when tracking weight gain. He's now up to 11 lb. 8 oz., which represents a 7 ounce gain in a week. Considering we are aiming for a .5-1 ounce gain a day, I'd say that's pretty much perfect progress. Hey, at least Dr. Doom couldn't wring his hands over that, right?
Dr. Doom finally entered to provide is review and diagnosis, and to be fair to the guy, this might be the most positive I've ever seen him. He was friendly and asked a lot of questions regarding Sam, including how we were holding up. Don't worry, he still had a couple Dr. Doom moments...they were just less pervasive than usual. Or maybe we had just girded our loins for bad news, and anything less than catastrophic would feel like Dr. Day was standing and applauding at little Sam. So let's get the Dr. Doom out of the way. Then we can talk about the lollipops and rainbows.
Dr. Doom, after praising Sam's weight gain, did drop a "is Dr. Moskowitz watching his head growth? Because that's just as important!" Suddenly, I started worrying about the circumference of Sam's head. He also added that, while he still believes that fixing the fistula in Sam's brain will eradicate the heart problem, "if it doesn't, there are other drugs for Sam and hopefully he won't have to be on oxygen or Sildenafil...for the rest of his life." There's the positive Dr. Doom I was looking for! In fact, the rest of Dr. Doom's story starts with the his first item of review - the chest x-ray. Sam's x-ray seems to be virtually unchanged from when we were first at Primary's. From my perspective, that's a neutral/slight positive development. No continued enlargement due to his heart getting tired and running down. No, it seems that the size of his heart is more due to the volume of blood it is having to pump. Dr. Doom did state that it was a good sign that it was unchanged, and then added a "but it also means that it isn't getting better by itself". Uhhhh...didn't you say that the brain fistula would have to be fixed before that would get better? He then told us that Sam appeared to still be breathing a bit hard and he could see the retractions. Thanks! We hadn't noticed. Hey, at least the guy's consistently gloomy. If you want a visual, just picture Eeyore without his tail. Hey, you'd be rain clouds too!
But let's get to the silver lining in Dr. Doom's delivery as well, because there were a litany of positives. First, pressures. The pressure in his heart (the right ventricle) appears to be holding steady from when he was in the hospital. That's a positive. We aren't seeing a return to the high pressures that got us admitted 3 weeks prior. But Dr. Day talked about a new pressure. Apparently, Sam still does have a small hole between the aorta and the pulmonary arteries. While it has mostly closed, it is still slightly open, most likely due to Sam's heart needing a little escape valve. One of the tests they do in the echocardiogram is measure the pressure in the aorta vs. the pressure in the pulmonary arteries. Unbeknownst to us, they have been monitoring this and Dr. Day was concerned that the aortic pressure was equal to the pulmonary artery pressure. Today, the pressure and flow through the small hole was at 25-30. To put it in perspective, the hope is that the pressure difference between the two is around 50. Last time, it was equal. Today, we're at 25-30. As Dr. Day stated, this is a definitive sign that the Sildenafil is doing it's job and taking pressure off of Sam's lungs.
We then turned our attention to the brain vs. heart debate, and his response to neurosurgery wanting to wait was remarkably pleasant. You can tell that he is worried about Sam's heart and lungs over the course of a long time. When I last spoke with him, he stated that for a child with a hole in his heart, they would wait 4-6 months to go in and fix the problem. He vehemently stated that he would be comfortable waiting until 4 months for Sam's brain to get fixed. He even went so far to say that if Dr. Brockmeyer wanted a little more time, there could be some re-evaluation. But based on Sam's current status, he was "very comfortable" waiting for Sam to be 4 months. He even stated that it would be easier on his recovery and the invasive nature of an embolization if they indeed went through a vessel in Sam's groin. Lollipops and rainbows, people. And puppies.
But probably the greatest slice of sunshine we got came from Sam and Dr. Day - on the subject of oxygen. When we went to the first appointment to see Dr. Day, they did an oxygen saturation test - with and without to see where Sam fell. On that dreadful day, Sam was at a 94 on oxygen (1/16 liter) and quickly dropped to 86 without. Today, Sam's on oxygen level was a nice 100. When we removed the oxygen, we were delighted to see that Sam's saturations only dropped to 93 and held steady. Hey, that wouldn't have even made the St. Mark's monitors beep! Dr. Day acknowledged it as well and said that it was a good sign that Sam didn't seem to be more labored without the oxygen. So while we are holding steady on 1/4 liter, he told Elisa that if she needed to run into a bank or grocery store, or give him a bath (the 20-30 minute variety), she could go ahead and do so WITHOUT oxygen. Maybe it's a small improvement to y'all, but to us, it's like confirmation that Santa Claus does indeed make toys at the North Pole. We were going to leave Dr. Doom's office with two realities. 1) Sam's outpatient visit actually remained an outpatient visit and 2) while we were staying on the oxygen/Sildenafil course, we could see a world without the cannula and oxygen on 24/7. Elisa mentioned being able to walk Lukas to the front of his school, instead of sending him down the catwalk. Hey, baby steps, but we'll take it.
For now, Sam's back home, still on oxygen, gearing up to increase his Sildenafil because he's packing on the pounds, and we're staring at potential surgery/embolization for Sam in the January timeframe. Dr. Day asked that we return for a check-up on early December. With a deep breath, we looked past Dr. Day's visit and set our sights on our next big activity. On November 6th...just over two weeks away, things get real with another MRI and further planning on how to tackle's Sam's fistula. Another IV. Another round of general anesthesia. And a Dr. Day test to see if Sam's heart is producing the dreaded protein that shows heart failure. Sounds like a gas, Dr. Doom.
Lollipops, rainbows, and puppies, people. Lollipops, rainbows, and puppies.
Leading up to today's appointment, you could see that we were trying to brace ourselves for a repeat performance of September 30th. Elisa asked me if we should pack a hospital bag in preparation. We arranged to have my Mom take the boys after school and plan on having them eat dinner at her house, all in the vein of preparation for the worst. I had warned my boss and employees of the appointment and that if I wasn't there on Wednesday, not to be surprised. Yes, we had started gearing ourselves up for another dose of Dr. Doom and an unexpected trek into some form of intensive care unit. Those around us probably felt pity but exasperation. Surely, Sam was thriving and we wouldn't be heading down this path again, right? But they patted our proverbial heads with understanding and told us good luck.
Sam's appointment was at 1:00pm, so we rushed around (I left work in preparation and Elisa spent her early afternoon letting Sam pee all over our couch and the floor...rookie!) getting prepared. I did feel like an old pro as we found parking near the Cardiology department, and then got sad that I knew the hospital well enough to know it's general layout. And we headed in. But we had work to do before Dr. Doom would grace us with his presence. First, we were sent to imaging for a couple snapshots with the x-ray machine. That included a self check-in, chatting with the administrative staff, and then finally getting the scans. Back we went to Cardiology. After a short sit down in the waiting room, we were escorted back to the Echocardiogram room. Sam got weighed, had a blood pressure check, and the tech performed the full scale echocardiogram. And then we were off to an examination room to soon be greeted by Dr. Day. We hadn't seen the doctor, and had already tallied almost 2 hours of Primary Children's fun.
First, a spot of good news. Sam's weight continues to be positive. It seems that we keep putting ourselves near an official medical scale every Tuesday, which is convenient when tracking weight gain. He's now up to 11 lb. 8 oz., which represents a 7 ounce gain in a week. Considering we are aiming for a .5-1 ounce gain a day, I'd say that's pretty much perfect progress. Hey, at least Dr. Doom couldn't wring his hands over that, right?
Dr. Doom finally entered to provide is review and diagnosis, and to be fair to the guy, this might be the most positive I've ever seen him. He was friendly and asked a lot of questions regarding Sam, including how we were holding up. Don't worry, he still had a couple Dr. Doom moments...they were just less pervasive than usual. Or maybe we had just girded our loins for bad news, and anything less than catastrophic would feel like Dr. Day was standing and applauding at little Sam. So let's get the Dr. Doom out of the way. Then we can talk about the lollipops and rainbows.
Dr. Doom, after praising Sam's weight gain, did drop a "is Dr. Moskowitz watching his head growth? Because that's just as important!" Suddenly, I started worrying about the circumference of Sam's head. He also added that, while he still believes that fixing the fistula in Sam's brain will eradicate the heart problem, "if it doesn't, there are other drugs for Sam and hopefully he won't have to be on oxygen or Sildenafil...for the rest of his life." There's the positive Dr. Doom I was looking for! In fact, the rest of Dr. Doom's story starts with the his first item of review - the chest x-ray. Sam's x-ray seems to be virtually unchanged from when we were first at Primary's. From my perspective, that's a neutral/slight positive development. No continued enlargement due to his heart getting tired and running down. No, it seems that the size of his heart is more due to the volume of blood it is having to pump. Dr. Doom did state that it was a good sign that it was unchanged, and then added a "but it also means that it isn't getting better by itself". Uhhhh...didn't you say that the brain fistula would have to be fixed before that would get better? He then told us that Sam appeared to still be breathing a bit hard and he could see the retractions. Thanks! We hadn't noticed. Hey, at least the guy's consistently gloomy. If you want a visual, just picture Eeyore without his tail. Hey, you'd be rain clouds too!
But let's get to the silver lining in Dr. Doom's delivery as well, because there were a litany of positives. First, pressures. The pressure in his heart (the right ventricle) appears to be holding steady from when he was in the hospital. That's a positive. We aren't seeing a return to the high pressures that got us admitted 3 weeks prior. But Dr. Day talked about a new pressure. Apparently, Sam still does have a small hole between the aorta and the pulmonary arteries. While it has mostly closed, it is still slightly open, most likely due to Sam's heart needing a little escape valve. One of the tests they do in the echocardiogram is measure the pressure in the aorta vs. the pressure in the pulmonary arteries. Unbeknownst to us, they have been monitoring this and Dr. Day was concerned that the aortic pressure was equal to the pulmonary artery pressure. Today, the pressure and flow through the small hole was at 25-30. To put it in perspective, the hope is that the pressure difference between the two is around 50. Last time, it was equal. Today, we're at 25-30. As Dr. Day stated, this is a definitive sign that the Sildenafil is doing it's job and taking pressure off of Sam's lungs.
We then turned our attention to the brain vs. heart debate, and his response to neurosurgery wanting to wait was remarkably pleasant. You can tell that he is worried about Sam's heart and lungs over the course of a long time. When I last spoke with him, he stated that for a child with a hole in his heart, they would wait 4-6 months to go in and fix the problem. He vehemently stated that he would be comfortable waiting until 4 months for Sam's brain to get fixed. He even went so far to say that if Dr. Brockmeyer wanted a little more time, there could be some re-evaluation. But based on Sam's current status, he was "very comfortable" waiting for Sam to be 4 months. He even stated that it would be easier on his recovery and the invasive nature of an embolization if they indeed went through a vessel in Sam's groin. Lollipops and rainbows, people. And puppies.
But probably the greatest slice of sunshine we got came from Sam and Dr. Day - on the subject of oxygen. When we went to the first appointment to see Dr. Day, they did an oxygen saturation test - with and without to see where Sam fell. On that dreadful day, Sam was at a 94 on oxygen (1/16 liter) and quickly dropped to 86 without. Today, Sam's on oxygen level was a nice 100. When we removed the oxygen, we were delighted to see that Sam's saturations only dropped to 93 and held steady. Hey, that wouldn't have even made the St. Mark's monitors beep! Dr. Day acknowledged it as well and said that it was a good sign that Sam didn't seem to be more labored without the oxygen. So while we are holding steady on 1/4 liter, he told Elisa that if she needed to run into a bank or grocery store, or give him a bath (the 20-30 minute variety), she could go ahead and do so WITHOUT oxygen. Maybe it's a small improvement to y'all, but to us, it's like confirmation that Santa Claus does indeed make toys at the North Pole. We were going to leave Dr. Doom's office with two realities. 1) Sam's outpatient visit actually remained an outpatient visit and 2) while we were staying on the oxygen/Sildenafil course, we could see a world without the cannula and oxygen on 24/7. Elisa mentioned being able to walk Lukas to the front of his school, instead of sending him down the catwalk. Hey, baby steps, but we'll take it.
For now, Sam's back home, still on oxygen, gearing up to increase his Sildenafil because he's packing on the pounds, and we're staring at potential surgery/embolization for Sam in the January timeframe. Dr. Day asked that we return for a check-up on early December. With a deep breath, we looked past Dr. Day's visit and set our sights on our next big activity. On November 6th...just over two weeks away, things get real with another MRI and further planning on how to tackle's Sam's fistula. Another IV. Another round of general anesthesia. And a Dr. Day test to see if Sam's heart is producing the dreaded protein that shows heart failure. Sounds like a gas, Dr. Doom.
Lollipops, rainbows, and puppies, people. Lollipops, rainbows, and puppies.
Saturday, October 19, 2013
Saving Sam (Chapter 3.05): Prologue - 10,139 days before
It had been a very cold day. Unseasonably cold, even though we were already in early December. And it seemed to be the worst day to traverse into the mountains to be "natural" Christmas revelers. Why go to a Christmas tree lot when you could go up to a tree farm, pick your favorite out, pull the chainsaw, and act like the Griswold's before their famous Christmas vacation. And as a complaining little 7 year old, I'm sure I wasn't the easiest or most helpful participant in the family tradition. It probably made it a bit more difficult that I wasn't with my parents. No, my grandparents were dealing with a little, cold child who wanted to play with toys as opposed to walk through a foot of snow. But this was the last day of one of my regular weekend overnights at my Grandparents, and with the coming Christmas holidays, the kid inside the kid couldn't be too mad. After all, he would be going over to his cousin's house after the tree had been picked and there would definitely be toys.
I still marvel at the things I remember of that day. I do remember the chill. And I will never forget legos. Because that was my toy of choice. My cousin and I headed down to his basement and room soon after we arrived home from getting a Christmas tree. I was warming up and we were perusing the games, toys, and other activities that would hopefully entertain us until it was time to go home and see my parents...and my brothers. Despite being cold, I was in heaven on a weekend overnight. Because they were always fun. We'd start on a Friday, usually at dinner at my parents house, with Grandma and Grandpa in tow. We'd head in and I would fondly drop my bag off into the back room. My Grandma had usually pulled the hide-a-bed out. It wasn't comfortable, but it was comforting. I'd go to bed, knowing that the next day would include a trip to Grand Central (which would eventually become Fred Meyer...and then close) for a $5 toy. I'd then get a choice - a movie or miniature golfing (well, at least in the summers). Sunday would probably include church, but I was more excited about having waffles for breakfast. And when I was at church and getting bored, my Grandma would slip me a consistent stream of Starburst...which I would use on the edge of the pew and pretend they were cars on a roller coaster. This was my routine.
Special weekends included the trip to my cousin's for Sunday dinner. Holiday seasons led to more special occasions, including Christmas shopping (hey, maybe more than a $5 toy at Grand Central!), Christmas tree hunting, or something else unexpected. So this weekender with Grandma and Grandpa, full of the trip to the store, most likely a movie, laying on the floor listening to Christmas music with my Grandpa, a hunt for a tree, and playing at my cousin's. I was probably getting sad. The weekend was ending, but I'd be damned if I didn't get some playtime. I didn't even hear the phone ring. I was too busy trying to figure out how to drag the large tub of legos up two flights of stairs.
I didn't hear the weeping as I headed up the first set of stairs. But I was clearly making noise, dragging the tub up the stairs because at the landing, my uncle asked me to come see him. Okay, fine, but I was bringing the legos with me. At the top of the stairs, my subconscious was taking in the scene. Marc, my uncle, was sitting in a chair in front of me. My Grandmother was in the kitchen, turned away, on the phone. My Grandpa was at the kitchen table, his head in his hands. Marc beckoned me again. He was upset. He looked like he was crying. I was oblivious. It seemed important to me to bring the legos to his feet. He pulled me up on his lap. I got turned around, so I could now see my Aunt. She was crying. I glanced over to the kitchen. My grandma's profile was now visible, and while I couldn't see tears, she was speaking in a hushed tone. She was upset. Before the words left my uncle's lips, I was still focused on playing with the legos. Hopefully this would be quick and I could get to building something fantastic.
But then the words were spoken. And my world changed. Crumbled. Became a bit more dark. Jeff had died. Jeff was gone. I was alone.
Jeffrey Neal Pierce was born on February 11, 1971 to Gayle and Dave Pierce. A beautiful little boy, and my parents first. So small, so precious, so late. Sometimes it is hard to think back and realize that my parents are where Elisa and I are now...in the throws of establishing and raising a small family. But for them, it was all about Jeff. Their new light in the world.
And then their world changed. Because soon after Jeff was born, my parents received life altering news. Jeff was Down's Syndrome. For those of you blissfully unaware, Down's Syndrome a genetic disorder also known as Trisomy 21. In short, each Down's Syndrome child has part or all of a third copy of the 21st chromosome. For those who have never experienced the wonder of a Down's kid, you would categorize them as intellectually lacking, with specific facial characteristics and a litany of potential health problems. But to say that is what a Down's kid is would be like saying the Earth is a tiny little blue planet. Sure, it's true but the majesty of the Earth would be grossly ignored and diminished. All of the "clinical" descriptions of Down's Syndrome are generally true. But they are so much more...life altering, if you will. A Down's kid is the embodiment of purity. A heart so large that they have room for their deepest detractors and bullies. A spirit so full that joy is found in the living, rather than the quality or length of it. A world view so tolerant that someone could spit in their face and they would respond with a hug. And a hope that the world was like that old Coke commercial - where all could join hands in perfect harmony.
Back in the seventies, Down's Syndrome, however, wasn't viewed as a challenging gift. It was a problem. It was something that could be avoided or shunted to the side. Doctors actually assumed that my parents would want to institutionalize Jeff because of the stigma and struggle that was sure to follow. Maybe some parents would have chosen that route. Not my parents. Jeff was theirs. Jeff wasn't going anywhere.
You would have thought that my parents had inherited enough for a lifetime. The news would have rocked any parent, but the idea that their first child had such a significant genetic disorder must have been agony. Love for the little baby. Sorrow and sadness that he wouldn't live a normal life - that he would need care and attention at every turn. He'd develop slower. His future was uncertain, and he was being born into a society that still viewed Down's kids as lesser citizens. And the world embraced this belief. Whenever there is anger and outrage at a racial slur being used, I think of Jeff. When a gay man or lesbian is called a derogatory term, I think of Jeff. Jeff was caucasian. Jeff wasn't, for all I know, gay. But words like "dumb", or "retard" get tossed around so easily in society, the group that can't defend themselves (or go onto CNN, YouTube, or the like) just smiles back. No hate. No anger. Just love - love born from not knowing anything more than the fact that human beings are human beings and deserve to be loved and love in return.
Yet, while Jeff slowly blossomed into everyone's favorite person and life lesson (more on that later), my parents weren't done. They approached 3 more pregnancies with utmost trepidation, performing Amniocentesis to see if another Down's kid was in their future. They brought home 3 new boys...all healthy, all normal (well, Elisa will disagree with me and normal being in the same sentence, but that's another blog). And then they got walloped again. Jeff didn't have a strong heart - it is a common occurence in Down's Syndrome. He had a hole in his heart and would need a heart and lung transplant. But they didn't do those surgeries for Down's kids back in the day. No, they weren't worth the time, effort, or organs. So while my Mom and Dad were raising an angel and 3 little hellions, they were faced with their own Dr. Doom incident. Only theirs never had a chance to turn around. My parents were told that Jeff wouldn't live past the age of 12. Their special child with special needs wouldn't get to be a teenager. He would die before.
As an adult, and with the onset of our own experience with Sam, I can't even imagine the courage, strength, and love that had to be infused into my parents each day. If it were me, I'd wonder every day that I woke up if something terrible would happen. I'd watch days and months fall of the calendar in an endless march towards Jeff's twelfth birthday. Yet, they continued on because they had to. Jeff dictated it. Their other children dictated it. The thought of what to come was too horrible to even imagine or contemplate. So they lived, through the oldest cliche of all time - one day at a time.
Jeff made it through his twelfth year. And his thirteenth. He celebrated his 14th birthday in February 1985. Winter turned to Spring. Spring warmed to Summer. And Summer cooled to Fall. As we neared another turn of season and cold air and snow rolled in, my parents kept taking care of Jeff. And their other kids. Without fail. On December 8, 1985, like every other day, they got out of bed and got ready. Except Jeff wasn't feeling well. He didn't feel like going to church. So my parents got him set up and resting and took one of my brothers to church. I was busy trudging through the snow to find a Christmas tree. When they got home, my Mom found Jeff. He was laying on her bed, with a paper and pencil so that he could take down messages if anyone called.
The next events happened quickly. Calling 9-1-1. CPR. Taking Jeff to the hospital, and finding out that he was indeed dead. Saying goodbye in the cold of a hospital room. And then calling the family - namely, my Grandparents while I picked out my legos in the basement of my cousin's house. In my life, there is before Jeff and after Jeff. Before, I was a little kid with few cares in the world. I was learning about tolerance, love, and a never ending grace. After Jeff was gone, I was fearful and didn't understand. I remember driving back to my parents and my Dad waiting for us at the bottom of the driveway. To that point, I never remember seeing my Dad crying. He was today. He held me tight. And I walked into a house that felt too empty. The following days meant a struggle to walk up to the casket to say goodbye. I thought Jeff was asleep. I thought he was pretending. I had bad dreams. Nightmares so pervasive that I had to start sleeping with my bedroom door closed. I'm 35 years old and I still need that door closed. I can't sleep for a second if it is open.
Yet, I always viewed my experience with Jeff as something that taught me so much about life, and that is true. I found tolerance in Jeff. I found the constant need to love what you have and the life you life. To embrace the quiet kid in the corner as opposed to make fun of them. I tried to be friends to people probably not as focused on being my friend out of a desire and need to be wanted and a part of something. I realized the importance of love and selflessness. And, to this day, I realize that the world can be viewed through the lenses of reality, or through the eyes of a pure soul departed too soon.
What I didn't realize was that Jeff was in my life for an altogether different lesson. I figured he'd continue to dominate my life. I just didn't realize that the greatest lessons Jeff could teach me wouldn't be taught for 10,139 days. Jeffrey Neal Pierce died on December 8, 1985. Samuel Ryan Pierce was born on September 11, 2013. 10, 139 days. I was ready to learn.
Over the first 5+ weeks of Sam's life, Jeff's lessons have continued to feed into me. But they were the lessons, not of Jeff's life, but of my parent's devotion, trials, and tribulations. When Samuel was taken away from us and into the NICU, my Mom and Dad were the first I contacted. Not just because they were Grandma and Grandpa. But because somehow, I knew they would understand. As Sam toiled away in St. Mark's, my parents headed up every day after watching the kids. They would sit with him, talk with him, and keep Elisa and I focused on our other kids and on giving Sam the love that he needed. When we came home for two days, she brought me the food and support that I'm sure countless others had done after Jeff had left us.
And when Dr. Day broke the news that Sam could die, I called my Mom immediately after. I cried in pain as I told her what the Dr. had said. I asked her to share the pain and information with my Dad. And I cried into my cell phone, not wanting her to tell me that it was okay, but mutely pleading that she could tell me that I would survive the loss of my child. I knew, in my grief, that she had been in my shoes some decades before. And there was an unspoken understanding in her voice. She knew the pain - and it was a pain only those who have been through the experience will ever know. The next day, she brought the boys to see Sam. She hugged me without comment. She told me that we would survive. We would get through this, no matter the outcome.
Next time, I dig into what my own experience was like in the days and weeks that followed Jeff's death, and how, 30 years later, they'd place me at the unlikeliest of doors.
I still marvel at the things I remember of that day. I do remember the chill. And I will never forget legos. Because that was my toy of choice. My cousin and I headed down to his basement and room soon after we arrived home from getting a Christmas tree. I was warming up and we were perusing the games, toys, and other activities that would hopefully entertain us until it was time to go home and see my parents...and my brothers. Despite being cold, I was in heaven on a weekend overnight. Because they were always fun. We'd start on a Friday, usually at dinner at my parents house, with Grandma and Grandpa in tow. We'd head in and I would fondly drop my bag off into the back room. My Grandma had usually pulled the hide-a-bed out. It wasn't comfortable, but it was comforting. I'd go to bed, knowing that the next day would include a trip to Grand Central (which would eventually become Fred Meyer...and then close) for a $5 toy. I'd then get a choice - a movie or miniature golfing (well, at least in the summers). Sunday would probably include church, but I was more excited about having waffles for breakfast. And when I was at church and getting bored, my Grandma would slip me a consistent stream of Starburst...which I would use on the edge of the pew and pretend they were cars on a roller coaster. This was my routine.
Special weekends included the trip to my cousin's for Sunday dinner. Holiday seasons led to more special occasions, including Christmas shopping (hey, maybe more than a $5 toy at Grand Central!), Christmas tree hunting, or something else unexpected. So this weekender with Grandma and Grandpa, full of the trip to the store, most likely a movie, laying on the floor listening to Christmas music with my Grandpa, a hunt for a tree, and playing at my cousin's. I was probably getting sad. The weekend was ending, but I'd be damned if I didn't get some playtime. I didn't even hear the phone ring. I was too busy trying to figure out how to drag the large tub of legos up two flights of stairs.
I didn't hear the weeping as I headed up the first set of stairs. But I was clearly making noise, dragging the tub up the stairs because at the landing, my uncle asked me to come see him. Okay, fine, but I was bringing the legos with me. At the top of the stairs, my subconscious was taking in the scene. Marc, my uncle, was sitting in a chair in front of me. My Grandmother was in the kitchen, turned away, on the phone. My Grandpa was at the kitchen table, his head in his hands. Marc beckoned me again. He was upset. He looked like he was crying. I was oblivious. It seemed important to me to bring the legos to his feet. He pulled me up on his lap. I got turned around, so I could now see my Aunt. She was crying. I glanced over to the kitchen. My grandma's profile was now visible, and while I couldn't see tears, she was speaking in a hushed tone. She was upset. Before the words left my uncle's lips, I was still focused on playing with the legos. Hopefully this would be quick and I could get to building something fantastic.
But then the words were spoken. And my world changed. Crumbled. Became a bit more dark. Jeff had died. Jeff was gone. I was alone.
Jeffrey Neal Pierce was born on February 11, 1971 to Gayle and Dave Pierce. A beautiful little boy, and my parents first. So small, so precious, so late. Sometimes it is hard to think back and realize that my parents are where Elisa and I are now...in the throws of establishing and raising a small family. But for them, it was all about Jeff. Their new light in the world.
And then their world changed. Because soon after Jeff was born, my parents received life altering news. Jeff was Down's Syndrome. For those of you blissfully unaware, Down's Syndrome a genetic disorder also known as Trisomy 21. In short, each Down's Syndrome child has part or all of a third copy of the 21st chromosome. For those who have never experienced the wonder of a Down's kid, you would categorize them as intellectually lacking, with specific facial characteristics and a litany of potential health problems. But to say that is what a Down's kid is would be like saying the Earth is a tiny little blue planet. Sure, it's true but the majesty of the Earth would be grossly ignored and diminished. All of the "clinical" descriptions of Down's Syndrome are generally true. But they are so much more...life altering, if you will. A Down's kid is the embodiment of purity. A heart so large that they have room for their deepest detractors and bullies. A spirit so full that joy is found in the living, rather than the quality or length of it. A world view so tolerant that someone could spit in their face and they would respond with a hug. And a hope that the world was like that old Coke commercial - where all could join hands in perfect harmony.
Back in the seventies, Down's Syndrome, however, wasn't viewed as a challenging gift. It was a problem. It was something that could be avoided or shunted to the side. Doctors actually assumed that my parents would want to institutionalize Jeff because of the stigma and struggle that was sure to follow. Maybe some parents would have chosen that route. Not my parents. Jeff was theirs. Jeff wasn't going anywhere.
You would have thought that my parents had inherited enough for a lifetime. The news would have rocked any parent, but the idea that their first child had such a significant genetic disorder must have been agony. Love for the little baby. Sorrow and sadness that he wouldn't live a normal life - that he would need care and attention at every turn. He'd develop slower. His future was uncertain, and he was being born into a society that still viewed Down's kids as lesser citizens. And the world embraced this belief. Whenever there is anger and outrage at a racial slur being used, I think of Jeff. When a gay man or lesbian is called a derogatory term, I think of Jeff. Jeff was caucasian. Jeff wasn't, for all I know, gay. But words like "dumb", or "retard" get tossed around so easily in society, the group that can't defend themselves (or go onto CNN, YouTube, or the like) just smiles back. No hate. No anger. Just love - love born from not knowing anything more than the fact that human beings are human beings and deserve to be loved and love in return.
Yet, while Jeff slowly blossomed into everyone's favorite person and life lesson (more on that later), my parents weren't done. They approached 3 more pregnancies with utmost trepidation, performing Amniocentesis to see if another Down's kid was in their future. They brought home 3 new boys...all healthy, all normal (well, Elisa will disagree with me and normal being in the same sentence, but that's another blog). And then they got walloped again. Jeff didn't have a strong heart - it is a common occurence in Down's Syndrome. He had a hole in his heart and would need a heart and lung transplant. But they didn't do those surgeries for Down's kids back in the day. No, they weren't worth the time, effort, or organs. So while my Mom and Dad were raising an angel and 3 little hellions, they were faced with their own Dr. Doom incident. Only theirs never had a chance to turn around. My parents were told that Jeff wouldn't live past the age of 12. Their special child with special needs wouldn't get to be a teenager. He would die before.
As an adult, and with the onset of our own experience with Sam, I can't even imagine the courage, strength, and love that had to be infused into my parents each day. If it were me, I'd wonder every day that I woke up if something terrible would happen. I'd watch days and months fall of the calendar in an endless march towards Jeff's twelfth birthday. Yet, they continued on because they had to. Jeff dictated it. Their other children dictated it. The thought of what to come was too horrible to even imagine or contemplate. So they lived, through the oldest cliche of all time - one day at a time.
Jeff made it through his twelfth year. And his thirteenth. He celebrated his 14th birthday in February 1985. Winter turned to Spring. Spring warmed to Summer. And Summer cooled to Fall. As we neared another turn of season and cold air and snow rolled in, my parents kept taking care of Jeff. And their other kids. Without fail. On December 8, 1985, like every other day, they got out of bed and got ready. Except Jeff wasn't feeling well. He didn't feel like going to church. So my parents got him set up and resting and took one of my brothers to church. I was busy trudging through the snow to find a Christmas tree. When they got home, my Mom found Jeff. He was laying on her bed, with a paper and pencil so that he could take down messages if anyone called.
The next events happened quickly. Calling 9-1-1. CPR. Taking Jeff to the hospital, and finding out that he was indeed dead. Saying goodbye in the cold of a hospital room. And then calling the family - namely, my Grandparents while I picked out my legos in the basement of my cousin's house. In my life, there is before Jeff and after Jeff. Before, I was a little kid with few cares in the world. I was learning about tolerance, love, and a never ending grace. After Jeff was gone, I was fearful and didn't understand. I remember driving back to my parents and my Dad waiting for us at the bottom of the driveway. To that point, I never remember seeing my Dad crying. He was today. He held me tight. And I walked into a house that felt too empty. The following days meant a struggle to walk up to the casket to say goodbye. I thought Jeff was asleep. I thought he was pretending. I had bad dreams. Nightmares so pervasive that I had to start sleeping with my bedroom door closed. I'm 35 years old and I still need that door closed. I can't sleep for a second if it is open.
Yet, I always viewed my experience with Jeff as something that taught me so much about life, and that is true. I found tolerance in Jeff. I found the constant need to love what you have and the life you life. To embrace the quiet kid in the corner as opposed to make fun of them. I tried to be friends to people probably not as focused on being my friend out of a desire and need to be wanted and a part of something. I realized the importance of love and selflessness. And, to this day, I realize that the world can be viewed through the lenses of reality, or through the eyes of a pure soul departed too soon.
What I didn't realize was that Jeff was in my life for an altogether different lesson. I figured he'd continue to dominate my life. I just didn't realize that the greatest lessons Jeff could teach me wouldn't be taught for 10,139 days. Jeffrey Neal Pierce died on December 8, 1985. Samuel Ryan Pierce was born on September 11, 2013. 10, 139 days. I was ready to learn.
Over the first 5+ weeks of Sam's life, Jeff's lessons have continued to feed into me. But they were the lessons, not of Jeff's life, but of my parent's devotion, trials, and tribulations. When Samuel was taken away from us and into the NICU, my Mom and Dad were the first I contacted. Not just because they were Grandma and Grandpa. But because somehow, I knew they would understand. As Sam toiled away in St. Mark's, my parents headed up every day after watching the kids. They would sit with him, talk with him, and keep Elisa and I focused on our other kids and on giving Sam the love that he needed. When we came home for two days, she brought me the food and support that I'm sure countless others had done after Jeff had left us.
And when Dr. Day broke the news that Sam could die, I called my Mom immediately after. I cried in pain as I told her what the Dr. had said. I asked her to share the pain and information with my Dad. And I cried into my cell phone, not wanting her to tell me that it was okay, but mutely pleading that she could tell me that I would survive the loss of my child. I knew, in my grief, that she had been in my shoes some decades before. And there was an unspoken understanding in her voice. She knew the pain - and it was a pain only those who have been through the experience will ever know. The next day, she brought the boys to see Sam. She hugged me without comment. She told me that we would survive. We would get through this, no matter the outcome.
Next time, I dig into what my own experience was like in the days and weeks that followed Jeff's death, and how, 30 years later, they'd place me at the unlikeliest of doors.
Thursday, October 17, 2013
Saving Sam (Intro)
Samuel Ryan Pierce was born into this world on September 11, 2013. After 22 hours (19 in hospital) of natural childbirth, he entered the world with a quiet grace, steel gray eyes, and a soft, contemplative disposition. Yet, when he did finally show up in the delivery room, Sam didn't actually have a name. You see, Sam wasn't planned. In fact, we had made the decision to not have any more children not long before Sam was conceived. The pregnancy was a surprise and took some adjustment. As we finally started to settle into the fact that we would have a third child, Elisa and I believed the entire experience should be one. So we didn't find out if we were having a girl or a boy. In some ways, the idea of it being a complete surprise seemed to fit. On the other hand, we already had two precious boys and were both fearful that we would
Wednesday, October 16, 2013
Saving Sam (Chapter 3.04): How much breast milk does it take to gain an ounce?
I've thought for some time that Elisa and I have quite the twisted view of what it's like to have an infant. Let me clarify. That twisted view is only twisted during the wee hours of the morning. Because for better or worse (I'll say better), we've had good sleeping children. And I have two theories as to why. My first goes back to Elisa's Costco sized milk supply. I've covered in previous blogs that her milk comes in Venti size only. No tall or grande for that girl. For the breastfeeding blog reader (wow, that sounded better before I wrote it), let me give you a little perspective. Typically, when a new baby is born, of greatest concern is the milk supply. Doctors, lactation consultants, and nurses all have theories on how to boost it. Feed more often, keep them on for 20 minutes at a time, eat right, exercise when you can, and my personal favorite...have a beer. Still, it's enough of a challenge that many moms will give up the dream within the first three months of breastfeeding. As they put it, they can't keep up.
When it comes to Elisa, she doesn't have that problem. In fact, I'd be woefully frightened if she did have a beer. Visions of a breast milk flood rivaling the time of Noah come to mind. Still not convinced? Early in Sam's life, Elisa would let him feed for 10-15 minutes. She'd then go home and pump. And she'd get another 8 ounces. Yeah, that's a cup of milk after Sam had already eaten. When Lukas was done breastfeeding, we literally had half of our freezer filled with pumped milk. Her supply is...ample. But that's not all. No, we need to speak about the fact that breast "milk" isn't the best descriptor. Breast "buttermilk"? Maybe. Breast "Half & Half"? We're getting there. I might even consider Breast "heavy whipping cream". Now we're talking. Honestly, the stuff separated. Similar to beer, you might think Elisa's milk has a healthy "head". And that's theory number one. Our kids are great sleepers because they're ingesting copious amounts of heavy whipping cream. It would make the most awake baby a bit sleepier.
Theory #2 is more straightforward. We force it upon them. Will it, if you will (won't you?). Elisa gets into a very early routine of 2-hour feedings throughout the day...and she will do whatever it takes to raise the child. Really, nothing is beneath her. Tickling, undressing, changing the diaper, and the dreaded cold cloth. The baby goes from asleep to ready to eat in about 10 degrees of cool. And, typically, the 2 hour routine works like a charm. It's time to unveil how successful we've been. Parents out there, you'll be impressed.
Lukas slept a 4-hour block on his first night home. He was so peaceful that Elisa and I woke up to check his breathing every 20 minutes. And he didn't make a peep for four hours. I remember telling a friend the next morning. She stared at me as if I was making it up. 4 hours on his 4th day of life? By 4 weeks in, we had to move Lukas to his own room, because his noises were keeping us up while he was sleeping for a 7-hour block. Yep, 7 hours just 4 weeks in. We were champions of the sleeping child. Miles came along and wasn't as strong. It took us a week to get him to 4 hours. Yes, we actually complained about it. But Miles soon progressed to 5-hour blocks 2 weeks in, and by 4 weeks in, he was giving us a nice 6-hour block. Again, we had conquered the baby. We were victors.
Whether it was the incessant schedule or the heavy whipping cream, we were ready to train Sam. And that opportunity was taken away. In the constant and unbending schedule of the St. Mark's NICU, we were feeding Sam on a 3-hour schedule. No exceptions. If you don't believe me, just know that Elisa overslept by 10 minutes on one early morning feeding. She was at the hospital 5 minutes later. The nurse was busily giving him a bottle. We had two days of trying to get Sam on a schedule when he was home, but the 3-hour schedule was pretty established by that point. I think we got a couple 4-hour blocks at night, but Sam was already heading towards 4 weeks. And then we were back in the hospital. Thankfully, Primary's was more willing to do the on demand thing, but a baby in the hospital tends to be more routined and less up and about. Generally, the three hour schedule stuck and we were lucky to get a 4 hour block at night.
I hear stories of 4, 5, and 6 months old still waking up every 3 hours. Or less. So I fully admit that my "reality" is probably not indicative of what every parent deals with. But we've had two children that gave us sleep. We're adjusting to Sam's interesting sleeping habits. First, Sam's deepest sleep seems to be between 6:00-9:00pm. Raising him for the 9-10pm feeding truly is like raising the undead. Cold cloths might get him to squirm, but he stays snoozing. Light blowing into his face makes him startle before he snores again. And 45 minutes later, we resort to openly pleading to Sam to wake up. Finally, he does. He eats. We wrap him. And he's wide awake. This wouldn't be a big deal if he just quietly looked around his bassinet. But he tends to whine and fuss and grunt and squirm and squeal. Finally, he settles in for a 4 hour block. 5 weeks in and we're only at 4 hours. It's like Christmas was cancelled. He wakes up at 2ish, and we get him fed, burped, and ready for bed. And then he REALLY makes noise. Enough that the other night, while he "slept" for his three hour block, I stared into the darkness. I actually started laughing at some of his noises. Remember - this is the guy that can't stand the ticking fan. Imagine the rhythmic breathing of weird noises. Every second or so, you get another bizarre sound. Only we worry about Sam, so he's not going to his room. He's still hooked to his pulse oximeter. We need to make sure his heart rate and oxygen saturations are within normal/acceptable ranges. And without fail, he wakes up at about 5. By the time we get him fed, it's nearing 5:40 or so. And if we're really lucky, he pees on the bed, through all of the sheets, and we end up getting blankets out and stripping the bed. Good times.
Lukas and Miles are conspiring. Lukas actually has his alarm clock because he loves to get up at 6:00am. So we settle back down (Sam decides to stop making animal noises only heard on the NatGeo channel), and in comes Lukas. He crawls into bed and starts the squirming routine. Soon after, here comes Miles, ready to have me take him to the bathroom, get a drink, and then collect his 6 lovies so that he can lay down. And then I depressingly look at the clock. Right on time to go shower so that I can go to work. I know I shouldn't be complaining, but this blog is my therapy. You'll have to roll your eyes and deal. I feel better, if not well rested.
Beyond the adventures in Sam sleeping, there have been some other Sam developments. I do have to say that I love that things have felt so normal (well, normal for Sam) in the last 4 days. I've only blogged twice in the last week. That's a record. I guess my therapy needs aren't as high as usual. But I do have to give some props to Dr. Doom...or at least some appreciation. And I have a weight update for you as well.
We took Sam into see Dr. Pete for his weekly weigh in on Tuesday. As we were walking back, Dr. Pete informed us that he had received a letter from Dr. Day, detailing out all of Sam's conditions so that we could try to get him that RSV preventative medicine I mentioned last week. I am very appreciative that he took the time and effort to protect Sam. I was highly entertained that Dr. Pete stated that it was an "incredibly well written, if not fully detailed at all of the Sam's problems". Yeah, that feels like Dr. Doom to me. He's helpful. He's working to make Sam better. But he'll never miss an opportunity to be Debbie Downer. At this point, I just accept it. After all, I figure the more depressing and dire the letter, the better Sam's chances of getting his medicine and slightly reducing our fears of the coming flu and cold season.
And that takes us to the best news of the week. Last week (Tuesday, in fact), Sam weighed in at Dr. Pete's for the first time. With clothes on, he tipped the scales at 10 lb. 7 oz. We headed for the scale with another sense of trepidation. We needed him to be gaining weight. Yes, I had even reduced myself to getting on a scale, weighing myself, and then doing the same thing with Sam in my hands and doing some math. When you want confirmation that baby is doing well, you'll try anything. It turns out that we didn't have anything to worry about. Not only is Sam gaining, he's proving that Elisa's breast milk is as copious and heavy whipped as usual. This week, Sam weighed 11 lb. 1 oz. with clothes on. Yep, you're reading that right. Sam packed on 10 oz. in a week. I think he's thriving. That makes my heart happy. I hope it's making his heart healthy. And stronger.
As we continue to fall into a more normal routine, I've decided to start expanding Sam's story. Because every story has a prologue. Every story has a prequel. And Sam has a few. Over the next few weeks, I'm going to take you way back into my childhood and to the lesson I truly think I learned 27 years ago and am only realizing now. I'll take you back into the start of our family and some of the struggle that existed for us, as it shapes the surprise of Sam. I'll invite you into the story of getting pregnant and interesting and unique pregnancy that we lived through...including seeing a nude Ricki Lake. And then I'll (maybe I'll be the first man to do this) share Sam's birth story. Sam's chapters didn't begin on September 11, 2013. No, they started 27 years ago. They progressed with Elisa and I in the 2000s. And they made 2012/2013 quite interesting. And as I said in my very first Sam blog, his is a story that I need to share. I owe him that. I owe me that. I owe Ricki Lake that.
And that's where we sit. As I speak, Elisa's feeding Sam an hour earlier than usual because we don't want to try to wake him in an hour. We're hopeful that his usual great sleep between 8-10 is going to translate into a 5-6-7 hour block. Right, Sam?
Pretty please?
Friday, October 11, 2013
Saving Sam (Chapter 3.03): I think we bought the luxury model
I can't begin to express how wonderful it is to say that I've gone three days without blogging and there is absolutely no rushed hospital admittance to blame. Things have settled down quite a bit, and I'm happy to report that I completed my first (and full) week of work, Elisa survived taking care of three kids at home, and Sam had no major relapse. Okay, fine. I know we didn't go to the Neuro team or Cardiologist this week, but I can be happy with small, measured progress right? Sam's still breathing quicker than normal. He still is on oxygen. I haven't forgotten that he has a major fistula in his brain that is going to require surgery/embolization. But we have traversed 7 days of home life. And I couldn't be more grateful.
That's not to say that things haven't been happening. On the contrary, Sam did finally express his true feelings about that darn multivitamin, Dr. Pete saved the day again, and Dr. Doom made a return visit to my cell phone. Oh, and we got our first medical bill...is it bad that my first reaction was to slam the counter and say "big bucks, big bucks, no whammies!"?
But let's start with Sam and his continued progress. Beyond the visit to Dr. Pete on Tuesday, we don't have a lot to measure against. All we know is this - Sam continues to be on 1/4 liter of oxygen, and we can polish a large tank of that off in just about 8 days. We place the pulse oximeter on his foot throughout the night, and have found that his oxygen saturations generally stay between 95-100%, which is normal. Yes, I know it's the oxygen. But we aren't getting beeping alarms like we did when Sam was at home on the 1/16 liter. It gives me hope that if we ever get good news at the Cardiologist (that Sam is improving rather than staying the course), maybe we can start to responsibly fiddle with his oxygen. That's not to say we haven't adjusted. I think Elisa and I are getting very good at trekking around the house with the 50 foot oxygen cord. We have also "almost" remembered to connect to the backpack on the first time, without forgetting to turn it on, string the cord through the backpack, or turn off the main tank at home.
Sam did finally speak to us, albeit non-verbally. You see, when we were at St. Mark's, Sam was prescribed a multivitamin with iron. Remember how I talked about how kid's medicines were just nastiness covered with bubble gum flavor? Well, apparently they don't extend this common courtesy to infant multivitamins. The smell is enough to make me reconsider the value of Flinstone vitamins. Get the multivitamin on anything and you may as well just throw it away. The smell doesn't leave. And woe to the person that gets the blast of a Sam burp after the stuff. You struggle to stay on your feet. Whoa. Sam clearly agreed. Whenever he would be forced (and it was once daily) to have the multivitamin, he'd made those faces. He clearly hated it. But the kid stomached it. He put up with it. And I speak about this in the past tense. Because yesterday, Sam had enough. And I realized that I've still got the gift of catch.
We were a bit late yesterday on giving him the meds, so it was just after dinner when Elisa started to torment the child with the foul smelling nasty. Sam's face contorted. He arched his back. He pushed away. He ran from the house. Okay, maybe not but he was thinking about it. And then, I saw the look. It's the look only a father resigned to vomit duty can understand. I grabbed a burp cloth, and did my best baseball catcher routine. I was just in time. Sam brought forth the yellow goo of hell from his stomach. I'm almost positive that he got every ounce of multivitamin out of his stomach. I was amazed to see just how much he could fit in his stomach at once, but I was also proud. Not a drop on the floor. Or the table. Yep, I still had it. Granted, it is nothing as exciting as Lukas took me through. My first experience with him involved vomiting onto my bare chest all manner of spaghetti (try getting that out of the carpet). The second was more memorable.
When our family was just three, Elisa, Lukas, and I had pulled up to Costa Vida for dinner one evening. Lukas had seemed fine, and never experienced any manner of sickness in the car before. So I wasn't really worried when I heard him cough (he was situated right behind the passenger seat, and Elisa was driving). One cough. Two coughs. Wet. Well, I didn't know that it was wet. I just felt something hit the back of my head. Did he throw something? Kick my head? Maybe I had an overactive imagination? Oh, no. All I had to do was feel the back of my head. Warm awfulness. Lukas projectiled right on Daddy's head. As I think back, I'm suddenly grateful that Sam gave me the look and the courtesy to catch it in the burp cloth. We'll have to wait until Sam's older before he starts his creative vomit stage. For now, I'll take this.
Anyway, I placed a call to Dr. Pete today. I was afraid that Sam was finally in open rebellion about the horrible tasting vitamin, and was confused anyway because Lukas and Miles had never been prescribed a multivitamin. I called and spoke to the nurse. I told her about neon yellow nastiness. She put me on hold, came back not 2 minutes later, and told me that Sam could stop the carnage. The multivitamin could be retired. Thank God. Because I was starting to eye the multivitamin and our daily attempts to feed it to Sam as more dangerous than his hypertension or fistula. We dreaded it. He dreaded it. We retired it. A happy family, once again.
I even got a call from Dr. Doom yesterday. I was expecting the call - I just didn't expect it to take the better part of the week. When we had called the Cardio fellow on Saturday night about Sam's 3 hours of crabby (and possible acid reflux), she had mentioned that she would be passing a note onto Dr. Day. I only feared that he'd want to back off the Sildenafil, and it's my favorite drug right now (right, Elisa? Wink, wink). I was pleased to say that the last week hadn't changed his bedside manner. Just as weird as ever. And a little overreactive. He was ready to prescribe Zantac for the acide reflux before I informed him that we had only that one isolated incident. He backed away and told me to keep him posted. While I had him on the phone, I did ask ask about the administration of the Sildenafil. Because when we were at the hospital, they were giving it to him 4 times a day QID - it didn't follow a rigid every 6 hours kind of schedule. Sam got the meds at 8:00am, 12:00pm, 4:00pm, and 8:00pm. Yet we were sent home on a "every 8 hours" prescription. So we had routinely given it to him at 6:00am, 2:00pm, and 10:00pm. What this meant, however, was that we were waking Sam up as much as 3 times a day to stuff this goop down his throat. And giving it to a sleeping kid is just begging for a gagging episode. So I asked Dr. Doom - and he told me that our OCD about the every 8 hours (silly us, following the instructions!) was unnecessary. He just cared that Sam had at least 6 hours between servings. Suddenly, I was celebrating the fact that I wouldn't have to put him through the 10:00pm and 6:00am feedings, but we could just feed him at his last feeding of the day and his first of the morning. I was so excited - maybe this would mean more sleep! And then Sam stayed awake until 10:00pm and was awake at 6:00am. Okay, then. Something tells me Sam knows a bit more about what's going on than we think. He's already toying with us and we're helpless to resist.
You'd think that would be enough for our first week of home life, right? Almost. We had to get a reminder of just how much Sam is worth. Okay, not really but it was a stark reminder of what it costs to have a sick baby. We got our first couple bills from St. Mark's. Sam was in NICU for 17 days. He was on oxygen, antibiotics, IV fluids, and Nitrous Oxide. Oh, and that multivitamin. Would you believe that his medications came to an astounding $52,000? Me neither, until I saw it. All told, Sam's St. Mark's facility bill (oh, don't worry - the physician bills are to come!) came to a mind blowing $131,000. Wrap your head around that. We still don't know what numbers will be coming from Primary Children's. I shudder to think what the cost of brain surgery might be. But it just goes to show, that when Elisa and I invest, we go for the luxury model. We begrudgingly had to upgrade our car when we knew Sam was on the way, and we gave in to the bane of our existence (in terms of cars). We got a.....sorry, it's almost too painful to say....a minivan. But when we got one, we weren't going to be cheap. We had to have something to look forward to when we were driving the minivan around. So we got the luxury model. It has every upgrade you can think of. Trust me, I've experienced them. This car runs the wipers for you. It beeps when you're going to hit something, or when someone walks behind your car. You don't need to put in an actual key. Heated seats. DVD player. Everything. Hey, we did it right.
I guess you could say that we unknowingly bought the luxury model of baby. This isn't the base model. This is the one that comes with all the bells and whistles. 50 foot oxygen cords. Brain fistulas. and an opening volley of $131,000 in medical charges. Hey, what can I say? I'm the luxury kind of guy. I won't got to Disneyland without staying in a Disney hotel. We have chair back seats at University of Utah football games. I rebel by shopping at an actual grocery store as opposed to Walmart.
And our latest luxury purchase is worth every penny. Because don't we deserve the best? We certainly got it. In spades.
Brad
That's not to say that things haven't been happening. On the contrary, Sam did finally express his true feelings about that darn multivitamin, Dr. Pete saved the day again, and Dr. Doom made a return visit to my cell phone. Oh, and we got our first medical bill...is it bad that my first reaction was to slam the counter and say "big bucks, big bucks, no whammies!"?
But let's start with Sam and his continued progress. Beyond the visit to Dr. Pete on Tuesday, we don't have a lot to measure against. All we know is this - Sam continues to be on 1/4 liter of oxygen, and we can polish a large tank of that off in just about 8 days. We place the pulse oximeter on his foot throughout the night, and have found that his oxygen saturations generally stay between 95-100%, which is normal. Yes, I know it's the oxygen. But we aren't getting beeping alarms like we did when Sam was at home on the 1/16 liter. It gives me hope that if we ever get good news at the Cardiologist (that Sam is improving rather than staying the course), maybe we can start to responsibly fiddle with his oxygen. That's not to say we haven't adjusted. I think Elisa and I are getting very good at trekking around the house with the 50 foot oxygen cord. We have also "almost" remembered to connect to the backpack on the first time, without forgetting to turn it on, string the cord through the backpack, or turn off the main tank at home.
Sam did finally speak to us, albeit non-verbally. You see, when we were at St. Mark's, Sam was prescribed a multivitamin with iron. Remember how I talked about how kid's medicines were just nastiness covered with bubble gum flavor? Well, apparently they don't extend this common courtesy to infant multivitamins. The smell is enough to make me reconsider the value of Flinstone vitamins. Get the multivitamin on anything and you may as well just throw it away. The smell doesn't leave. And woe to the person that gets the blast of a Sam burp after the stuff. You struggle to stay on your feet. Whoa. Sam clearly agreed. Whenever he would be forced (and it was once daily) to have the multivitamin, he'd made those faces. He clearly hated it. But the kid stomached it. He put up with it. And I speak about this in the past tense. Because yesterday, Sam had enough. And I realized that I've still got the gift of catch.
We were a bit late yesterday on giving him the meds, so it was just after dinner when Elisa started to torment the child with the foul smelling nasty. Sam's face contorted. He arched his back. He pushed away. He ran from the house. Okay, maybe not but he was thinking about it. And then, I saw the look. It's the look only a father resigned to vomit duty can understand. I grabbed a burp cloth, and did my best baseball catcher routine. I was just in time. Sam brought forth the yellow goo of hell from his stomach. I'm almost positive that he got every ounce of multivitamin out of his stomach. I was amazed to see just how much he could fit in his stomach at once, but I was also proud. Not a drop on the floor. Or the table. Yep, I still had it. Granted, it is nothing as exciting as Lukas took me through. My first experience with him involved vomiting onto my bare chest all manner of spaghetti (try getting that out of the carpet). The second was more memorable.
When our family was just three, Elisa, Lukas, and I had pulled up to Costa Vida for dinner one evening. Lukas had seemed fine, and never experienced any manner of sickness in the car before. So I wasn't really worried when I heard him cough (he was situated right behind the passenger seat, and Elisa was driving). One cough. Two coughs. Wet. Well, I didn't know that it was wet. I just felt something hit the back of my head. Did he throw something? Kick my head? Maybe I had an overactive imagination? Oh, no. All I had to do was feel the back of my head. Warm awfulness. Lukas projectiled right on Daddy's head. As I think back, I'm suddenly grateful that Sam gave me the look and the courtesy to catch it in the burp cloth. We'll have to wait until Sam's older before he starts his creative vomit stage. For now, I'll take this.
Anyway, I placed a call to Dr. Pete today. I was afraid that Sam was finally in open rebellion about the horrible tasting vitamin, and was confused anyway because Lukas and Miles had never been prescribed a multivitamin. I called and spoke to the nurse. I told her about neon yellow nastiness. She put me on hold, came back not 2 minutes later, and told me that Sam could stop the carnage. The multivitamin could be retired. Thank God. Because I was starting to eye the multivitamin and our daily attempts to feed it to Sam as more dangerous than his hypertension or fistula. We dreaded it. He dreaded it. We retired it. A happy family, once again.
I even got a call from Dr. Doom yesterday. I was expecting the call - I just didn't expect it to take the better part of the week. When we had called the Cardio fellow on Saturday night about Sam's 3 hours of crabby (and possible acid reflux), she had mentioned that she would be passing a note onto Dr. Day. I only feared that he'd want to back off the Sildenafil, and it's my favorite drug right now (right, Elisa? Wink, wink). I was pleased to say that the last week hadn't changed his bedside manner. Just as weird as ever. And a little overreactive. He was ready to prescribe Zantac for the acide reflux before I informed him that we had only that one isolated incident. He backed away and told me to keep him posted. While I had him on the phone, I did ask ask about the administration of the Sildenafil. Because when we were at the hospital, they were giving it to him 4 times a day QID - it didn't follow a rigid every 6 hours kind of schedule. Sam got the meds at 8:00am, 12:00pm, 4:00pm, and 8:00pm. Yet we were sent home on a "every 8 hours" prescription. So we had routinely given it to him at 6:00am, 2:00pm, and 10:00pm. What this meant, however, was that we were waking Sam up as much as 3 times a day to stuff this goop down his throat. And giving it to a sleeping kid is just begging for a gagging episode. So I asked Dr. Doom - and he told me that our OCD about the every 8 hours (silly us, following the instructions!) was unnecessary. He just cared that Sam had at least 6 hours between servings. Suddenly, I was celebrating the fact that I wouldn't have to put him through the 10:00pm and 6:00am feedings, but we could just feed him at his last feeding of the day and his first of the morning. I was so excited - maybe this would mean more sleep! And then Sam stayed awake until 10:00pm and was awake at 6:00am. Okay, then. Something tells me Sam knows a bit more about what's going on than we think. He's already toying with us and we're helpless to resist.
You'd think that would be enough for our first week of home life, right? Almost. We had to get a reminder of just how much Sam is worth. Okay, not really but it was a stark reminder of what it costs to have a sick baby. We got our first couple bills from St. Mark's. Sam was in NICU for 17 days. He was on oxygen, antibiotics, IV fluids, and Nitrous Oxide. Oh, and that multivitamin. Would you believe that his medications came to an astounding $52,000? Me neither, until I saw it. All told, Sam's St. Mark's facility bill (oh, don't worry - the physician bills are to come!) came to a mind blowing $131,000. Wrap your head around that. We still don't know what numbers will be coming from Primary Children's. I shudder to think what the cost of brain surgery might be. But it just goes to show, that when Elisa and I invest, we go for the luxury model. We begrudgingly had to upgrade our car when we knew Sam was on the way, and we gave in to the bane of our existence (in terms of cars). We got a.....sorry, it's almost too painful to say....a minivan. But when we got one, we weren't going to be cheap. We had to have something to look forward to when we were driving the minivan around. So we got the luxury model. It has every upgrade you can think of. Trust me, I've experienced them. This car runs the wipers for you. It beeps when you're going to hit something, or when someone walks behind your car. You don't need to put in an actual key. Heated seats. DVD player. Everything. Hey, we did it right.
I guess you could say that we unknowingly bought the luxury model of baby. This isn't the base model. This is the one that comes with all the bells and whistles. 50 foot oxygen cords. Brain fistulas. and an opening volley of $131,000 in medical charges. Hey, what can I say? I'm the luxury kind of guy. I won't got to Disneyland without staying in a Disney hotel. We have chair back seats at University of Utah football games. I rebel by shopping at an actual grocery store as opposed to Walmart.
And our latest luxury purchase is worth every penny. Because don't we deserve the best? We certainly got it. In spades.
Brad
Tuesday, October 08, 2013
Saving Sam (Chapter 3.02): It's all in the delivery, part deux
I'm not sure what made it so difficult. Maybe, I was just out of practice. After all, I hadn't pulled my sorry ass out of bed to get ready for work for almost a month. I wish I could say it was laziness. No, I had usually stayed in bed because either Elisa or I had just gotten home from the NICU at St. Mark's. Or, we weren't even remotely rested after trying to share a twin bed. Even once we were home, we'd worry so incessantly about Sam's stats that it didn't feel like we were getting sleep. So maybe I just wasn't used to it. I also stayed in bed, at times, out of depression. Especially last Tuesday morning, after Dr. Doom had provided his horrible prognosis, I just didn't want to move. I didn't have the energy to face more horrors. It could have been that I felt down.
I think, however, I was scared to go back to work...and to be forced to talk about Sam. I was not looking forward to the sad stares. The pause after the congratulations. People who hadn't followed the blog asking me where I had disappeared to. I wrote the blog, yes, for my own therapy. And it really has helped. But it was also a venue that could keep people posted on how Sam was doing without having to relive the good, bad, and ugly of the experience 17 times over. It's exhausting enough when you're telling someone good news or a funny story over and over. Imagine reliving some of your worst times, and feeling that you're somehow failing someone who cared enough to ask if you don't take them through the entire experience.
There was one more reason for my hesitation, however. I would be leaving Elisa with Sam. No, I wasn't worried that she couldn't handle it. I was worried that she wouldn't have a sounding board. She wouldn't be able to ask questions, wonder if Sam was going to get better, or escape for a quiet moment if she needed it. She'd be on her own, and I would be at work. It seemed cruel. Go through four weeks of hell, and then go our separate ways to "battle" our own broken psyches. Joy upon joys. Still, I was hopeful that I would get out of bed, help Elisa get settled for the day, and enjoy work. Maybe I was overreacting. Maybe things wouldn't be so hard.
A few blogs ago, I said I needed to trust Elisa's intuition. Maybe, just maybe, I need to trust my own. The feelings I had - of my own return to work and Elisa going it alone - were well founded. At work, I was faced with good and bad. I was able to thank and reconnect with a couple people that literally saved my life during these last four weeks. It was especially comforting to be able to tell him that he saved my life, in person. For the first time, I was able to vent about Sam with someone outside my family. And, true to the form of this blog, I can now be honest in some of my comments to my friend. I talked about how angry I was. That there were so many reminders in this world about the pain we were experiencing that I felt like I couldn't escape. I even vented about one of my most frustrating experiences thus far (sorry, folks...that's for my friend, not for the blog. I don't want to offend you). But along with the good, I also got the bad. I got the pregnant pauses. The clueless but caring individuals that wanted to know what had happened. I nearly cried 4 times. I silently cried once.
Throughout it all, I got a constant stream of texts from Elisa and knew that she was equally struggling. Left to her own devices, she saw signs of Sam slipping...the hands, his eyes, his oxygen, what happened when the cannula came out of his nose (and his stats dropped), his sleeping (he was a tired one), and the like. And we fell into an unhealthy routine. Elisa would mention a concern. I would try to placate it. And then I'd do a Google search to see what I could find. Wash. Rinse. Repeat. By the time I headed home, I was physically awake and emotionally exhausted. Elisa was too. Sadly, Sam was just getting ready to give us one of our greatest scares. Of course he was. Get our emotions nice and raw, and then wallop us across the face.
It started around 7:30, and seemed innocent enough. Sam had been sleeping most of the day. My Google searches had convinced me that his cluster feeding over the weekend and the endless sleep were part of a common 3-week growth spurt. So Elisa headed up when Sam was awake (he hadn't been) to eat. After Elisa was done, she started burping him. She was successful at dislodging a big burp, but then Sam screamed bloody murder right after. And from that point on, cried. And whined. And arched. And otherwise scared the crap out of us. He couldn't get comfortable. He wanted to be held, but then would squirm and cry again. He didn't want his bink. He didn't want to sleep. I thought his breathing got worse. I thought his heart was beating out of his chest. And trust me, 2 1/2 hours is a long time to fret, worry, and watch. By 10:00pm, I was hopeful that Sam was going to eat and feel better. The only guess we had was some acid reflux (without the spit up) was bothering him. I remembered Dr. Day mentioning that reflux could be a side effect of the Sildenafil.
When Sam was trying to eat and continued to scream, we both had enough. I picked up the phone and we called the Cardiologist for the second time since we were home. In a weird way, I felt that this Fellow wasn't quite up to snuff. When you get a lot of "Hmm!" when you mention a symptom, you know you're in trouble. Together, utilizing the one medical degree between us, we came to the conclusion that it probably was a spot of reflux. I was instructed to sit him up after feedings in the hope that it would resolve, and to go buy over the counter meds that worked 50% of the time. Wow, thanks! 50% of the time it works all the time. It did seem, however, that Elisa had powered through the 10:00pm feeding, and Sam had at least stopped crying. We put him down, and the...special night began. No, Sam didn't cry and convulse. He moaned. First, he's breathing fast. With every breath, he would do a little baby moan. One thing you must know about me is that I like my quiet when I'm trying to sleep. It drives Elisa crazy, but if our fan is making any annoying clicking noise, I'm out of bed and trying to adjust it. I just can't sleep when it's happening. You can only imagine, then, how I reacted to a baby moan that took place every second...for 5 hours. While we were sure Sam was there, breathing, and sleeping, I don't think Elisa and I were. And man...babies make weird ass noises when they're little. They give that clicking fan a run for its money, to be sure.
I am happy to report that Tuesday was a much better day, both for me at work and for Elisa at home. Free from the first day back, I still had reminders, but I was also able to start letting my mind leave Sam for short bursts. I felt exhilarated to be needed at work, and to have a clarity in how things were progressing since I had been away from everything for the past month. Elisa was stronger too. She took both kids to school and then grabbed a Starbucks. That didn't mean it was all smooth sailing. She feared the cannula had fallen out, so she pulled over to check. She went home and realized that Sam had been awake all morning (see? I told you that the sleeping paid off!) and all she could do was sit on the couch. I talked her through selecting one thing that she wanted to accomplish the entire day. Tomorrow, she could try two if she was successful with the one. And she ended up, I believe, enjoying some time with her boy, even though she was still nervous. She also swept and polished our kitchen floors. Okay, it was one task completed. But when you're where we are, you realize how critical it is that you got through a work meeting without getting lost in your own mind. Or that you cleaned a floor that hadn't been touched for 4 weeks. Little things are sometimes big things, people.
But this was all leading up to the main event. Because today, we had Sam's first appointment with his Pediatrician. I was still nervous - Dr. Day, the NICU, 4 Neonatologists, and the CICU had killed any naivety I previously had about going to the doctor. While sitting in the waiting room, I couldn't focus. I couldn't sit still. I just kept playing my previous experiences over in my head, secretly wondering if we would get more bad news at our newest trip into the medical world. That, however, was completely unfair to our Pediatrician. I've met plenty of doctors in my life, and I can unequivocally say that Dr. Pete Moskowitz is my favorite. Maybe it's because he is so personable. Maybe he just has a way of not making you feel dumb. Or perhaps its the fact that he spend 45 minutes with you, answering every question and inquiring about how you, as a parent, are doing. Dr. Pete is our medical savior. I should have known that he wouldn't disappoint.
And in the span of about 80 minutes, he did what every other doctor, nurse, or practitioner hadn't been able to do. He calmed us. He didn't sugar coat things. We didn't leave thinking that Sam was healthy. No, it was in his delivery that he explained things, talked through our concerns, and said "it's going to be okay"..without ever actually saying those words.
We caught Dr. Pete up on the latest developments - the fistula, MRI, move from CICU, discharge from PCMC, and the three days of constant worrying. And then he started taking us through things:
The fistula
He would have never suspected that it could be that, but once we told him, it made sense. He told us that an AVM, while problematic, is not typically known for causing a high enough flow of blood to affect heart and pulmonary pressures. A fistula, however, encourages rapid flow and he could see how that could be causing the heart to work harder. In his mind, that was the missing piece in Sam's story - way back, he kept saying that something didn't make sense. He wanted to know why Sam had the pressures. He felt the fistula was a sensical answer.
The fix
I specifically called this blog "it's all in the delivery, part deux" to draw a direct comparison to Dr. Smith, way back in the St. Mark's NICU. If you'll remember, she was the doctor that gave us good news in such a way that I was sure Sam was worse. Dr. Pete, on the other hand, talked through a serious condition with grace and hope. He described a fistula and AVM as being "two types of chocolate...a little different, but still chocolate". He understood why the Neuro team wanted to wait. Heart caths can be done on infant patients and that is a difficult procedure as the heart is really the size of the baby's fist. Imagine trying to navigate smaller vessels way beyond the heart, and getting it right. The bigger Sam is, the bigger the vessels are...and the easier it will be to fix and get at the problem. But Dr. Pete showed no concern about the fix. They'd get it. They'd fix him. And it would resolve the heart and lung pressure. No doubt. Just acceptance of the path and a belief that Sam would come out of it like a champ.
Our concerns
We talked about all of them. Dr. Pete wasn't worried about the whole hand temperature things. It made no medical sense that the left hand would ever naturally feel cooler or that his right hand would feel warmer. No other symptoms existed. It could have been the IV. It was probably just the way that Sam lays...and it restricts some flow. Nothing to be worried about. We talked about the reflux, and Dr. Pete walked us through being careful about reflux medication until we were sure it was the cause...it could have been a big gad bubble. We covered his breathing, his lung pressures, Dr. Day's bedside manner, our potential need for therapy, our feelings of being first time parents on our third child, what to do when Sam got sick, how to track and view his weight gain, and how to handle the oxygen (he, like many others, said that the oxygen wouldn't be going anywhere for awhile...but he did it in a way that said "and that's okay"...which made it okay for us too). Everything we brought up was valid. Everything had something to talk through. None of it was stupid. None of it was unclear. And with every word, our chests seemed to unclench.
Sam, by all accounts, was a beautiful baby boy. They weighed him with his clothes on (don't ask me why), and he was tipping the scales at a robust 10 lbs. 7 oz. Clearly, Sam was still growing, which is the key sign that he's battling. Lukas and Miles got flu shots as a protection to Sam. Dr. Pete stated that he was working on a preauth for a drug that could help Sam avoid the worst of RSV (it's usually reserved for babies that turn blue from a lack of oxygen, so he's not sure Sam will qualify but he'll try to get it until he's told no).
We entered Dr. Pete's office today with a little boy suffering from pulmonary hypertension and brain fistula. We left with that same boy, and the weight of the world removed from our shoulders. Maybe it will last for a day. Maybe an hour. Maybe a week. Maybe a month. But it doesn't matter. It was lifted. I felt like I could breathe. I didn't feel like Elisa and I were so alone. And I felt hope. Not that he gave us a magic pill, but that he made us see that the bitter pill can and will be swallowed, and that the true hope and belief is that it will work.
And after you've been through 17 days in NICU, 2 days at home, 5 days at CICU, the potential prognosis of losing your child, and 3 more days home full of worry, you're long past trying to accept the bitter pill. You just need someone to crush it up, put it in some chocolate sauce, and make it palatable. Can you ask for anything more from the doctor of your child?
Dr. Pete = chocolate sauce
In strict medical terms, of course. Okay, maybe as a human being too.
Brad
Sunday, October 06, 2013
Saving Sam (Chapter 3.01): A different kind of reality
I'm still not sure why I was so down on Saturday.
You'd think, after 17 days in St. Mark's and another week at PCMC, I'd
just be ecstatic to be home, with Sam, and not where I thought we might be last
Monday. But I was down. Very down. Low enough that Elisa kept
asking me what was wrong and I very nearly committed the sin of answering with
a "I'm fine". Don't worry...I never got to that desperate
place. Maybe my naivety had been shattered, as a week before I had
triumphantly headed home from St. Mark's, only to have my world crash on the
rocks of reality two days later. The idea that we'd come home and things
would magically get better were over. I was faced with a more daunting
task. To accept that our reality had changed. And it had changed in
every single way.
The fact remains that Sam has a long road to
travel. His pulmonary hypertension is only controlled at
"manageable" levels right now. He's still on Sindenafil. He's
still on oxygen. And he still has a very serious fistula that is sitting
in his brain. No, normal is about 17 leagues out from us right now.
And I think that reality might have been hitting me. Sam was and is
still sick. Yes, we are hopeful of a full recovery. Yes, we will do
everything in our power to make that happen. But the reality is...we are
helpless to Sam's future. It's up to him, his Cardiologist, and a
fantastic group of neurosurgeons to write Sam's next few chapters. We
simple stay the course. We monitor his oxygen saturations. We feed
him to continue to grow. We process our medical news. And we wait.
Elisa was wonderful as I struggled through my day. She was patient,
not pushy. But she kept inquiring as to why I was down. Eventually
we talked about it, and I expressed my fears. And my worries about the
future. What if Sam didn't get better? What if they couldn't fix
his brain without doing damage? What if we were managing him for the rest
of his or our lives? It was a dark place, and I was failing to see any of
the positives - like the fact that we were home. I was able to hold Sam
whenever I wanted. He was starting to coo. He couldn't stare long
enough at his brothers. And his mom...his beautiful mom...had her baby in
her arms.
Last week at this time, I wrote about a new kind of
fear that I was experiencing. That fear has been replaced with a new kind
of reality. One that doesn't sugarcoat our situation or the path that
lays before us. Instead, it is realizing that Sam's prognosis of being
cured is down the road. Elisa and I will wake every day and go to sleep
every night, our minds heavy with the worry of Sam's condition, his current
progress (or lack thereof), the emotional stability of ourselves and our other
children, along with a little thing called life...you know, bills, work,
friends, school, etc. That doesn't seem to take a hiatus when you'd
really like it to. That's not to say we haven't enjoyed having Sam home.
I love it. It's calming. I don't miss the hospital one bit,
and I am attached to our bed like it's my life raft...hey, I've even started
discovering what sleep is like! But our reality is a stark one - until
Sam is deemed cured and normal, the road is only in front of us, regardless of
the tumult of a road we've already travailed. I'm no longer scared.
I'm resigned to the fact that fear is now as normal as breathing in and
out.
To give you some insight into this new reality, let
me just illustrate three examples we've experienced in the last two days.
The first came at about 7:00pm on our first night home. The
telephone rang. By this point, I recognized any number from St. Mark's or
PCMC. This one was from PCMC. And it was Dr. Doom...I mean, Dr.
Day. He was nice enough to be seeing how Sam was, and if the transition
home had gone as expected, but then we got down to brass tacks. He was
surprised that the neuro team was considering brain surgery over embolization.
But he followed that up with a "but I understand that they want more
time...because the brain is too important. You only get one shot to make
it right". One shot. That's comforting, if not obvious.
He also told me that while Sam's pressures were under control, he lived
every day with the same pressures as a jogger. So where you and I sit around
like vagrants (hey, welcome back to our St. Mark's days!) at Pioneer Park, Sam
sits with us and his heart and lungs are working as if he just buzzed around
that park in a race. The Dr. also equated Sam's heart pressures to having
a hole in his heart, so when I inquired about how long Sam could go without
surgery, he told me that they waited 6 months to fix holes. That's what
he expects with Sam. I think his opinion is you don't want to put the
heart through much more than 6 months. If that's true, we would be
looking at a pretty tumultuous March/April timeframe next year. Spring
will be interesting, to say the least. Let's hope we're celebrating great
improvement as we head into summer. That would be a wonderful treat.
Dr. Day also dropped a few more gems for us to keep
in mind. When I asked how to know if Sam was doing well or struggling, he
said it was all about the weight gain. If Sam was gaining anywhere from
1/2 to 1 ounce per day (weighing 1-2 times per week), we were on the right
track. If he plateaued or started losing weight, we'd need to get him in
to be evaluated. Oh goodie...something else to worry about! Outside
of that, however, Dr. Day said that we didn't need to rush back to see him.
The plan for the MRI on November 6th was fine. If we could see Dr.
Day a week before (last week of October), that would be ideal. I asked
what we'd have in store...he said an echocardiogram, and potentially an EKG.
Otherwise, we just need to watch potential side effects to the Sildenafil
and keep moving Sam forward. If this isn't how you spend your Friday
evenings, I think you can start to understand how our new "reality"
is unfolding.
Example #2 came on Saturday morning...well, I'm
unsure if it was Friday night or Saturday morning. It just happened after
everyone was in bed and sleeping. Sam woke up to eat, and as we were
changing him, Elisa noticed that his left hand felt cooler than his right hand.
I initially equated it to how he was wrapped, and that we like to keep
our room a little cooler than the normal person. But when he woke up
again, his hand still felt colder. While Elisa fed Sam, I did more Google
searches, trying to understand what was going on. It wasn't until the
next morning that a new idea popped into my head. Sam's "warm"
hand was his IV hand. And it was swollen - there was a bump where the IV
had been. I started believing that perhaps his other hand wasn't cold.
Maybe his left hand was normal and his right hand was overly warm because
it's healing. We spend the remainder of the morning feeling hands and
fingers (without trying to worry). Elisa eventually called the
Cardiologist Fellow at PCMC just to make sure. He thought that it was
probably the IV hand that was abnormal. But every time we picked him up,
we were testing his hands. It wasn't until Sunday when I actually started
with Sam's feet. I felt his feet, then felt his left hand, and realized
they were very similar in temperature. Only the IV hand felt warm.
Yep, I'm pretty sure that's the abnormal one. But who knew that
Sam's temperatures in his hands and feet would be the prevailing topic of the
weekend? We didn't...but I think we do now. We'll be looking at
every single thing.
Which leads me to our secondary worry. We
watch and feel Sam's breathing all day, every day. We try to gauge if
he's breathing fast or slower. We look at his retractions and try to see
if they are less severe, or getting better. Yes, this is where we live.
I do think that his retractions have improved, but I also wonder if part
of our new reality will be looking for signs that aren't there. Or seeing
signs that mean nothing, but converting it to a major concern. Elisa had
her parents bring an old scale over on Sunday night and we weighed him.
It's an old scale, and probably not very accurate. But it told us
that Sam had lost weight. Okay, okay. It's not even a digital
scale. The chances of getting a true reading similar to what he had in
the hospital is probably zero. But this is where we live. For bad
(the hands) or for good (the breathing), Elisa and I don't just live with how
Sam is. We are evaluators. We are looking for signs of decline or
signs of improvement. Interestingly enough, our search typically matches
our mood. On Saturday, when I was Mr. Grumpy Gills, everything I saw
pointed to concern. On Sunday, where I found more hope, I was noticing
how much better his breathing was. It probably means that Sam is exactly
the same as he was when we left PCMC on Friday. But this is our new
reality. This is now who we are.
As for our new reality, we will spend the new week
melding it with our old reality. For the first time in a month, Elisa
will take the boys to school. I will attempt to resume my work schedule
and actually go into the office. I mowed the lawn. I went grocery
shopping. Elisa did laundry. We both attempted to clean the house.
The only real medical update is that we'll try to get into see our
Pediatrician this week. Hopefully, we can have Dr. Pete tell us to quit
worrying. Then again, depending on our moods, he'll either give us hope
or another pile of things to worry about. That, you can count on.
In many ways, I hate the fact that this is our new
reality. Because the fear of what's going on with Sam can sometimes cast
a pall over the rest of our lives. But when I look back at where I was
last Sunday...on the eve of the worst day of my life, I'm also grateful that it
is fear based in reality, not fear based in the unknown. And as Elisa put
it ever so succinctly yesterday, Sam's here. And he wouldn't be here if
the doctors didn't think he was well enough to be here. And if he gets
worse, they will make him better. And if he gets better, I can tell Dr.
Day "in yo face!" Whatever the future holds, our new reality is
clear. Sam is sick. Sam has a long road ahead. But I'll be
damned if we won't arrive at the day that I can write a blog that says the
journey is over. Sam's hell now in the past. And he can be a
normal, healthy kid, itching to write all of his own chapters across the globe
(and out of the hospital). I refuse to see any other end to this reality.
I can't. I won't. And, as we've known since he arrived, Sam
will be atypical. He'll surprise. He'll get better.
He has too. Because that's the only reality I'll
accept.
Brad
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