After ten days in the NICU, Belalu had stabilized enough for us to finally go home. She had been put on Phenobarbital when they first realized she was having seizures, but still had two more after that, so they changed her to Keppra. That seemed to work. The Dr. wanted her to be seizure-free for three or four days before we could be released, so those additional seizures were devastating for more than one reason. Of course it was horrifying to see her turning blue and nerve wracking to hear the machines she was hooked up to suddenly go off in their shrill, heart-stopping tone; but it also meant that our countdown clock was re-started, and our family had to face more days apart while our day-to-day normality was put on hold for what seemed like an indefinite period of time.
It did indeed end, however, and we gladly left the hospital and the NICU to head home and start our "new normal." The medication made Belalu sleepy, so I was grateful that at least all that juggling of newborn and toddler was easier at first than I had anticipated. I should clarify that it was the first drug that really knocked her out- in the NICU she slept almost all the time, and even when awake, was pretty limp. I know newborns sleep a lot, but this was extreme. The nurses would try to wake her up for a feeding, and had a hard time of it. She would eat and immediately fall back asleep. Nevertheless, thankfully, we had no problems nursing and she never had to take supplements. It took some time to get the Pheno out of her system, and while the Keppra was better, she still was a pretty sleepy baby for the first three months. I was very concerned about how this medicine was affecting her brain development, but got little info from the Dr.'s, who assured me that it wouldn't. I have to admit I was not convinced. While in the NICU, we'd have these team meetings with all the Dr's studying our case, and when I had asked about the effects of the medicine on her development, the neurologist told me that it wouldn't have a negative impact. "Pheno is an imperfect drug, but it's the one we're most familiar with, so that's why we're using it." I asked him why it was imperfect- what were the side effects, and he didn't really give me an answer. Once we switched to Keppra, he told me that it was the Pheno that was making her so sleepy and limp. I still don't know why he didn't tell me that when I asked, and it made me distrust his explanations a bit. So, I continued to worry about her brain development in the subsequent months, especially since we had been told that there was a chance that the seizure-induced apnea that had caused her to turn blue could have affected her brain, too.
With E I was fairly laid-back about his development. I read up on the month-to-month milestones, and loved watching him reach them, but didn't worry if he was ever behind in some, because I knew he had his individual growth pattern and trusted that he would reach them eventually, which he did. With Belalu, though, we were constantly vigilant about her development, still not sure if the seizures were behind us or if they were indicative of something more serious that was still to be revealed. At two months, the neurologist determined that she could be weaned off Keppra. More anxiety as we waited to see if the seizures would return and relief when it appeared they wouldn't. At four months, we joyously kicked the infernal monitor out of our house for good. Its constant false alarms made us so indifferent to them that if any real emergency happened, I wondered if we'd even notice right away. I was convinced that Belalu was a normal, healthy little girl and the neonatal seizures were just some bizarre occurrence that would be left to marvel at when she graduated college and went on to do whatever amazing thing she was destined to do in the world.
Then, we watched a video of Essie at her age sitting in the bouncy chair, effortlessly reaching for the little velcro toy hanging down in front of him. And we realized that Belalu was unable to do it. At first I thought it was cognitive, but then J understood that it was physical. She couldn't reach out her arms at all. They were almost always bent at the elbows and tucked into her body. I immediately called the birth-to-three program to set up an evaluation. Since she was in the NICU she automatically qualified, but I hadn't believed it necessary at first. They confirmed that this was not normal and were concerned that she held her hands in fists all the time, too. We began to work on encouraging her to stretch out her arms to reach for things and to open her hands more.
By six months, she had made great progress, although her arms could not straighten out all the way. The PT thought that she was holding her arms in like that to help stabilize her balance to compensate for the low tone in her abdomen. At Belalu's well visit the pediatrician noted some concern that her growth seemed to have slowed down. She said that if it didn't pick up by the next appointment, we'd be referred to a specialist. I asked what it could indicate, and she said it could be a problem with her endocrine system. I didn't give it a lot of consideration, however, because I was convinced that everything was fine and in my ignorance, this didn't sound like it was related to the seizures or her arms.
Three more months went by, and all was well as far as I was concerned. And then we had the nine-month well check. I'll leave that one for it's own post.
Showing posts with label our story. Show all posts
Showing posts with label our story. Show all posts
Tuesday, July 16, 2013
Wednesday, June 26, 2013
Our Story: Ten Days in the NICU
That day after Belalu was born and had been sent to the other hospital began a week and a half of surreality (I think I'm making that word up) that I wouldn't have been able to anticipate. I was alone in the hospital room in town, while J and our newborn daughter were in another state. He was essentially all alone, too, as he spent the day helplessly watching as they subjected her to test after test. She continued to have blue episodes, and we were very concerned about how the lack of oxygen would affect her cognitive development. Honestly, I don't now remember all the different tests she underwent, but I know they gave her an MRI and a CT scan. It was a Friday, and by the end of the day they had some additional testing to do, but since it was now the weekend, we would not get any further answers until Monday. So, we had to accept that we would continue to be confused and scared and not have any answers to allay our fears for at least two more days. We felt helpless.
My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.
I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.
They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.
Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.
My hospital discharged me as soon as possible, and by Saturday afternoon I was with my baby again. I tried to spend as much time in the NICU as possible, but the nurses would constantly urge me back to my own room as I fell asleep with her in my arms. J was back home with Juju and Essie, so it was a quiet, lonely room, though I was so grateful for the Children's Miracle Network that allowed me to stay at the hospital for free. It was so hard, though, being in the neonatal wing, hearing all those other families loving on and enjoying their newborns and then going home with them as I continued to wait until the day we could leave with her. I believed that my newborn needed to be touching one of us almost constantly- E had slept with us from the very beginning, even while still in the hospital, so having a long hall and many walls between us was a separation that wore on me physically. The few times I left the hospital to get some fresh air and a change of scenery, I think I had something resembling a mild panic attack. I would have trouble breathing, my pulse would race, and I just felt anxious until I was back holding her again. At the same time, I was experiencing my first nights without Essie. I had never been away from him overnight before. Those four days I was worried about when I thought all I'd have to deal with was a c-section seemed like nothing compared to 10 nights in another state.
I'm not sure if it was the pain medication I was taking from the operation or just plain shock, but I felt very little emotion during the NICU days. That first day, I remember looking down at my tiny little girl, who had had a healthy, uneventful pregnancy and had been born on her due date and just wondering- what were we doing here? It was a surreal place. There were no windows and the lights were always very dim. Most of the time, the only sounds were the beeping of machines or the low talk of the nurses to each other. It felt completely removed from the rest of the world. Suddenly, we were in a new category of parents. Our daughter was most likely going to have special needs. We both come from families with very little health concerns- I always took my health for granted. I had stepped foot in a hospital less than five times in my entire life- and almost all of those times were related to visiting people who had given birth. And yet, here we were. I couldn't wrap my head around it.
They finally figured out that the blue episodes were seizures, but this lent little knowledge to her state. We were just going to have to wait and see if there would be cognitive or physical delays; if the seizures would appear throughout her life or if she would outgrow them; if she had a condition with a name or would have no further health concerns. There was one Dr. in particular who was determined to give us an answer as to why this was happening, but at the same time told us that the best news would really be that there was no answer to the seizures, because that meant she might just outgrow them without further complications. Ultimately, that's how we left the hospital: without answers. They had figured out a medication that seemed to stop the seizures (Keppra), but that left her sleeping almost constantly. She was to be hooked up to a monitor in case her breath stopped or her heart slowed, an infernal machine that would go off throughout the night because she liked to sleep on her stomach and this made her breathing shallower. We were trained in CPR in case a blue episode came and didn't go away, and I was petrified she would die in my arms, because I still had a hard time recognizing the episodes when they did come.
Interestingly, that first night I was reunited with her she was lying asleep in my arms and I was just watching her. J and I had been lovingly joking to each other about her short legs since the ultrasound, and her arms and legs did seem to be disproportionately shorter than her torso, with its hugely distended belly. Suddenly, I thought to myself, "maybe she's going to be a dwarf." "Maybe that's all it is." I didn't realize then how many health problems people with dwarfism can have, so at that moment it would have been such a relief to me to know it was dwarfism and not a more dramatic physical disability like CP, which had been proposed at one point as a possibility. When I asked the medical team in the morning if Belalu could have dwarfism, though, they resoundingly told me, no, it wasn't that. This strong negation of my guess then obviously made her diagnosis nine months later so much harder to grasp.
Sunday, June 9, 2013
Out Story: Belalu is Born
We had the EV (external version) scheduled on her due date, August 18th at 10 a.m. In the middle of the night before, I had a lot of contractions, but didn't think too much of it. When we got up, E asked if we could take a walk around the block, so we did- literally one block. My contractions increased during the walk, to the point where I had to hold on to J's arm by the end. We got back home to get E ready for daycare and us the hospital, but I quickly realized that I was in labor and we needed to go right then. We dropped him off, and when we got to the hospital I was over 8 cm dilated.
I knew Belalu was still breech, because together with the contractions, I could feel her kicking me- she was lying diagonally. They gave me a shot to stop the contractions and the Dr. came in to tell me we'd be going right into surgery, since they couldn't do the EV if I was in labor. By that point, I had resigned myself to letting go of all expectations for her birth. My low point had been earlier in the week, and at this point, I just wanted to meet her and make sure she was healthy. So when the local anesthesia didn't work, and they told me they would need to give me a general one, I just surrendered and said, "fine." I still remember lying there in the OR with all those people around me, saying good-bye to J and thinking, "I am living exactly what I was petrified of." I wouldn't even be conscious when she was born. My sister, husband, and sons would meet Belalu before me. It was the complete opposite of E's birth. But as I was thinking all this, I was calm because I had surrendered all control at that point. It was what it was. As long as she was healthy, it would be fine.
Once I finally was able to hold her, I was happy to see that she nursed right away. Her apgar score was not great at first, there had been a lot of meconium, the nurse told me. She had been born at 11:40 a.m. and was 7lbs 9oz and 20 in long. Soon after we had met, Belalu was lying in my arms and J noticed that she was turning bluish/purple. I didn't think too much of it, because babies are so funny looking and weird colored at first anyway. But it happened a couple more times that afternoon, and he was really worried. The nurses and mid-wife, however, dismissed any concerns.
That night, everyone had gone home and I was lying in bed, dosing, with her in my arms. A nurse came in and told me the Dr.-on-call wanted to do the newborn exam and it wouldn't be too long. I dosed off and woke up an hour later. It was about 4 a.m. Belalu still wasn't there. I called the nurse and asked where my baby was. She told me the Dr. was still observing her. I dosed again, woke up, and asked once more why they hadn't brought her back. She told me that the Dr. would be in soon. When she came in, the Dr. told me that she had detected a heart murmur and Belalu had turned blue again. They were going to send her to a hospital across the river in another state, half an hour away. They had called an ambulance to take her, but because of my surgery I had to stay where I was.
I called J at 6 a.m. and told him what was happening. When the Dr. had been telling me all this, I was numb and completely calm. When I talked to J, my voice broke. Having to say it out loud was much harder than just absorbing the info as they told it to me. He came right over, and they wheeled our baby into the room so we could say good-bye. She was so tiny in that huge incubator. She just looked so alone, and I reached in through one of the holes to grasp her little hand and give it a squeeze. J followed behind the ambulance to spend the day with her as she underwent a battery of tests. I was left back at the hospital, alone.
I knew Belalu was still breech, because together with the contractions, I could feel her kicking me- she was lying diagonally. They gave me a shot to stop the contractions and the Dr. came in to tell me we'd be going right into surgery, since they couldn't do the EV if I was in labor. By that point, I had resigned myself to letting go of all expectations for her birth. My low point had been earlier in the week, and at this point, I just wanted to meet her and make sure she was healthy. So when the local anesthesia didn't work, and they told me they would need to give me a general one, I just surrendered and said, "fine." I still remember lying there in the OR with all those people around me, saying good-bye to J and thinking, "I am living exactly what I was petrified of." I wouldn't even be conscious when she was born. My sister, husband, and sons would meet Belalu before me. It was the complete opposite of E's birth. But as I was thinking all this, I was calm because I had surrendered all control at that point. It was what it was. As long as she was healthy, it would be fine.
Once I finally was able to hold her, I was happy to see that she nursed right away. Her apgar score was not great at first, there had been a lot of meconium, the nurse told me. She had been born at 11:40 a.m. and was 7lbs 9oz and 20 in long. Soon after we had met, Belalu was lying in my arms and J noticed that she was turning bluish/purple. I didn't think too much of it, because babies are so funny looking and weird colored at first anyway. But it happened a couple more times that afternoon, and he was really worried. The nurses and mid-wife, however, dismissed any concerns.
That night, everyone had gone home and I was lying in bed, dosing, with her in my arms. A nurse came in and told me the Dr.-on-call wanted to do the newborn exam and it wouldn't be too long. I dosed off and woke up an hour later. It was about 4 a.m. Belalu still wasn't there. I called the nurse and asked where my baby was. She told me the Dr. was still observing her. I dosed again, woke up, and asked once more why they hadn't brought her back. She told me that the Dr. would be in soon. When she came in, the Dr. told me that she had detected a heart murmur and Belalu had turned blue again. They were going to send her to a hospital across the river in another state, half an hour away. They had called an ambulance to take her, but because of my surgery I had to stay where I was.
I called J at 6 a.m. and told him what was happening. When the Dr. had been telling me all this, I was numb and completely calm. When I talked to J, my voice broke. Having to say it out loud was much harder than just absorbing the info as they told it to me. He came right over, and they wheeled our baby into the room so we could say good-bye. She was so tiny in that huge incubator. She just looked so alone, and I reached in through one of the holes to grasp her little hand and give it a squeeze. J followed behind the ambulance to spend the day with her as she underwent a battery of tests. I was left back at the hospital, alone.
Wednesday, May 29, 2013
Our Story: The final days of pregnacy
It had been so exhausting traveling alone with a toddler three weeks out from my due date. I got home that night and collapsed into my bed. As I lay there, I could feel her flip inside me. I had an appointment scheduled with the midwife the next day, since she hadn't seen me for a month, and she confirmed that the baby was breech. I panicked.
I did not want a c-section. I wanted a completely natural birth. I had had such a wonderful experience with E, and I had been hoping to have an equally great experience with Belalu. Plus, I had E, who had been my constant companion all summer and who I was already worried was going to feel slighted when the new baby came along. He had been super clingy in the past few months and I couldn't imagine that having a baby would make that better. Not to mention, having to stay at the hospital for four days of recovery and then not being able to lift him.... I did not want, could not have, a c-section.
I went to work trying to get her to turn. I had read that sometimes babies flip for a reason, so I didn't want to do anything invasive in case she had the cord around her neck or something equally dangerous. For example, I was offered some homeopathic pills that I decided not to take (and I was forever relieved that I had made that choice, since I had so many what-ifs on my list while we were in the NICU, and this was one less thing to wonder about). I did do handstands in the pool and supported shoulder stands at home. I had done hypnobirthing with E and hadn't really trained with it as much this time, but I did order the CD for flipping the baby. I drove and hour and a half to see a chiropractor specializing in pregnant women. I did acupuncture and moxibustion. I did everything I could to get her to flip back, but nothing worked. The last option was an external version (where the Dr. physically turns the baby from the outside), but it could induce labor. J was due home five days before my due date. I really wanted him to be there for the birth, so we decided to schedule the EV on my due date. I was scheduled to go in at 10 am, and was told to be prepared to have a c-section that day if the EV didn't work.
In all these days leading up to my due date, I felt helpless. I saw a c-section looming and was petrified. I didn't want surgery. On the other hand, all this time I spent trying to flip the baby was time I could have been spending with E enjoying our summer together. This wasn't how it was supposed to be. First, this baby comes out of nowhere and now I'm going to get cut open because of her? How had I gotten to this point? What was happening??!?!? (I'm sure the pregnancy hormones and not having my husband there didn't help my mental state ;) I was angry, I was scared, I was frustrated. I felt completely and utterly helpless. It was my lowest point- those finals days before my due date. Little did I know then, it was all just making me stronger for what was to come.
I did not want a c-section. I wanted a completely natural birth. I had had such a wonderful experience with E, and I had been hoping to have an equally great experience with Belalu. Plus, I had E, who had been my constant companion all summer and who I was already worried was going to feel slighted when the new baby came along. He had been super clingy in the past few months and I couldn't imagine that having a baby would make that better. Not to mention, having to stay at the hospital for four days of recovery and then not being able to lift him.... I did not want, could not have, a c-section.
I went to work trying to get her to turn. I had read that sometimes babies flip for a reason, so I didn't want to do anything invasive in case she had the cord around her neck or something equally dangerous. For example, I was offered some homeopathic pills that I decided not to take (and I was forever relieved that I had made that choice, since I had so many what-ifs on my list while we were in the NICU, and this was one less thing to wonder about). I did do handstands in the pool and supported shoulder stands at home. I had done hypnobirthing with E and hadn't really trained with it as much this time, but I did order the CD for flipping the baby. I drove and hour and a half to see a chiropractor specializing in pregnant women. I did acupuncture and moxibustion. I did everything I could to get her to flip back, but nothing worked. The last option was an external version (where the Dr. physically turns the baby from the outside), but it could induce labor. J was due home five days before my due date. I really wanted him to be there for the birth, so we decided to schedule the EV on my due date. I was scheduled to go in at 10 am, and was told to be prepared to have a c-section that day if the EV didn't work.
In all these days leading up to my due date, I felt helpless. I saw a c-section looming and was petrified. I didn't want surgery. On the other hand, all this time I spent trying to flip the baby was time I could have been spending with E enjoying our summer together. This wasn't how it was supposed to be. First, this baby comes out of nowhere and now I'm going to get cut open because of her? How had I gotten to this point? What was happening??!?!? (I'm sure the pregnancy hormones and not having my husband there didn't help my mental state ;) I was angry, I was scared, I was frustrated. I felt completely and utterly helpless. It was my lowest point- those finals days before my due date. Little did I know then, it was all just making me stronger for what was to come.
Monday, May 27, 2013
Our Story: The Ultrasound and the rest of pregnancy
Since I had no idea how far along I was, they scheduled an ultrasound for my first appointment. I was already into my second trimester, so not only did I find out I was pregnant that week, but that I was having a girl! It was so surreal- we had been hoping for a girl, but even that news was a little muted by the overall shock of me being pregnant and having an important job interview two days later. I had essentially skipped the whole first trimester, at least in terms of the waiting game. Mid-August didn't seem all that far away.
During the ultrasound, the technician made a comment about Belalu's legs being short. No one took it any further than that. And when I mentioned this detail to Dr. Pauli last fall, he told me that it would have been too soon to detect hypo based on leg length. But the fact remains, her legs were shorter than average from the beginning. Incidentally, we didn't do any testing. It was too late for many of them, but I wouldn't have done them anyway, just as I hadn't with Essie. I was very upset that I hadn't been taking prenatal vitamins and had been taking birth control, but the nurses and midwife assured me that the baby was healthy. Luckily, I don't drink much alcohol anyway, so while I had had some while unknowingly being pregnant, it would have been a drink here and there. Nevertheless, all these factors raced around and around in my head when we got Belalu's diagnosis and the nagging question is still there: did I do something to cause this condition?- Even though I've been assured by many Dr.'s that isn't the case, I still wonder, how much do they really know about hypo and the factors that cause it?
My pregnancy was pretty uneventful. I had had gestational diabetes with my first pregnancy, but strangely enough did not have it with the second. I did travel to Argentina when I was 7 months pregnant. It was a grueling trip for work and especially hard while bringing a nursing toddler along. Later that summer J went to Spain to visit his family while I went to Maine to visit mine. He didn't want me home alone with E for a month, so I flew back home with Essie by myself three weeks before my due date. Again, more "what-if" factors for us to mull over while in the NICU.
During the ultrasound, the technician made a comment about Belalu's legs being short. No one took it any further than that. And when I mentioned this detail to Dr. Pauli last fall, he told me that it would have been too soon to detect hypo based on leg length. But the fact remains, her legs were shorter than average from the beginning. Incidentally, we didn't do any testing. It was too late for many of them, but I wouldn't have done them anyway, just as I hadn't with Essie. I was very upset that I hadn't been taking prenatal vitamins and had been taking birth control, but the nurses and midwife assured me that the baby was healthy. Luckily, I don't drink much alcohol anyway, so while I had had some while unknowingly being pregnant, it would have been a drink here and there. Nevertheless, all these factors raced around and around in my head when we got Belalu's diagnosis and the nagging question is still there: did I do something to cause this condition?- Even though I've been assured by many Dr.'s that isn't the case, I still wonder, how much do they really know about hypo and the factors that cause it?
My pregnancy was pretty uneventful. I had had gestational diabetes with my first pregnancy, but strangely enough did not have it with the second. I did travel to Argentina when I was 7 months pregnant. It was a grueling trip for work and especially hard while bringing a nursing toddler along. Later that summer J went to Spain to visit his family while I went to Maine to visit mine. He didn't want me home alone with E for a month, so I flew back home with Essie by myself three weeks before my due date. Again, more "what-if" factors for us to mull over while in the NICU.
Friday, May 24, 2013
Our Story: Discovering I was pregnant
I had wanted to have kids close in age, but 2011 was going to be a very busy year. We had three overseas trips planned and a trip to the East coast. I was going to be interviewing for a tenure-track position at the university where I had been working on a contract basis since 2005. If things had gone according to the first plan, my second child would have been born at the beginning of Summer 2011, but with the busy year ahead, the second plan was to have him/her the beginning of Summer 2012.
In December 2011, E was still nursing, but it suddenly got very uncomfortable for me. I was nauseous, but not to the point of illness. I just didn't have much of an appetite. My lower back had begun to ache. I was feeling sluggish, but we had just moved E to his own room in a crib and he wasn't taking it well, so none of us was getting much sleep. It was winter, and the cold didn't do much for my exercise motivation. I figured my back hurt because I wasn't getting enough exercise, and I also blamed the lack of exercise on my lack of appetite.
Three months later, we go to Puerto Rico during spring break. I haul out the summer clothes, and I'm dismayed to discover that they are snug. If I overindulge, my stomach is the first place I show it. I was still exhausted, but that was pretty much a common state for me those days with an active toddler, a full-time job, and a dissertation to defend. Then I almost fainted, twice. Suddenly, (yes, really, it took that long) it occurred to us that I could be pregnant. J said it first. I remember exactly where we were in Ponce, PR. I had just left the Music Museum after nearly fainting. It was hot, there was no air conditioning, I could have been dehydrated... I excused it away, but J pointed out that my back was bothering me, my stomach was looking really round, and I was constantly needing to pee. The possibility began to enter my thoughts slightly, but it was still too terrifying to acknowledge.
The first day after returning home, while J was still at work, I took out the other test from the box I had used with E and gave it a try. Positive. I couldn't believe it. I couldn't get ahold of J, who was in a meeting, so I called my sister. She was excited- I was petrified. This wasn't the plan. It couldn't happen this year. I had too much going on. I was on the mini pill and nursing. I couldn't be pregnant. I had an interview later that week for the position I had been working towards for years. I couldn't start a new job by going on maternity leave.
I called my midwife's office and explained that I thought I was pregnant, but that maybe the test had expired and I should get a new one. She asked me what made me decide to take the test, and when I told her all the "signs," she just laughed and told me I was definitely pregnant. We had to schedule an appointment right away, because I didn't know how far along I was. Though December's discomfort did enter my mind, I couldn't believe I would have made it three months without realizing I was pregnant.
In spite of all my logistical concerns, I was actually pretty happy that I was pregnant, since I had wanted my kids to be close in age. Work pressures had forced me to postpone my original plan, but apparently someone else had their own plan, and she wasn't waiting for me to feel "ready" for her. She was coming on her terms. (I have a feeling this is going to be a life-long theme with this girl ;)
In December 2011, E was still nursing, but it suddenly got very uncomfortable for me. I was nauseous, but not to the point of illness. I just didn't have much of an appetite. My lower back had begun to ache. I was feeling sluggish, but we had just moved E to his own room in a crib and he wasn't taking it well, so none of us was getting much sleep. It was winter, and the cold didn't do much for my exercise motivation. I figured my back hurt because I wasn't getting enough exercise, and I also blamed the lack of exercise on my lack of appetite.
Three months later, we go to Puerto Rico during spring break. I haul out the summer clothes, and I'm dismayed to discover that they are snug. If I overindulge, my stomach is the first place I show it. I was still exhausted, but that was pretty much a common state for me those days with an active toddler, a full-time job, and a dissertation to defend. Then I almost fainted, twice. Suddenly, (yes, really, it took that long) it occurred to us that I could be pregnant. J said it first. I remember exactly where we were in Ponce, PR. I had just left the Music Museum after nearly fainting. It was hot, there was no air conditioning, I could have been dehydrated... I excused it away, but J pointed out that my back was bothering me, my stomach was looking really round, and I was constantly needing to pee. The possibility began to enter my thoughts slightly, but it was still too terrifying to acknowledge.
The first day after returning home, while J was still at work, I took out the other test from the box I had used with E and gave it a try. Positive. I couldn't believe it. I couldn't get ahold of J, who was in a meeting, so I called my sister. She was excited- I was petrified. This wasn't the plan. It couldn't happen this year. I had too much going on. I was on the mini pill and nursing. I couldn't be pregnant. I had an interview later that week for the position I had been working towards for years. I couldn't start a new job by going on maternity leave.
I called my midwife's office and explained that I thought I was pregnant, but that maybe the test had expired and I should get a new one. She asked me what made me decide to take the test, and when I told her all the "signs," she just laughed and told me I was definitely pregnant. We had to schedule an appointment right away, because I didn't know how far along I was. Though December's discomfort did enter my mind, I couldn't believe I would have made it three months without realizing I was pregnant.
In spite of all my logistical concerns, I was actually pretty happy that I was pregnant, since I had wanted my kids to be close in age. Work pressures had forced me to postpone my original plan, but apparently someone else had their own plan, and she wasn't waiting for me to feel "ready" for her. She was coming on her terms. (I have a feeling this is going to be a life-long theme with this girl ;)
Wednesday, May 22, 2013
Our Story: Introduction
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| Belalu, May 2012 |
Around this time a year ago, we were in limbo. We were waiting for an
appointment with the geneticist to see if she would diagnose Belalu with
a form of dwarfism. J was pouring over webpage after
webpage, trying to determine if she had dwarfism, and if so, what kind. I
was trying to stay neutral, waiting to see what a Dr. said before
reacting to something that may not have even been true. He would come to me several times a day with medical terminology I had never heard before and couldn't wrap my head around "lordosis" "foramen magnum" "skeletal dysplasia"... My head spun with it all. Then there was the diagnosis. And I began writing here, to sort out my thoughts. However, I never did get around to talking about the year and a half before that: my pregnancy and her first months. I kept meaning to, but just never did. So, now, on the one-year anniversary of learning that Belalu has hydrochondroplasia, I want to do just that. I'll post by stages. I remember first entering the LP world and soaking up every bit of info I could find that could give me some insight into my daughter's condition, so I'm hoping that parents in a similar situation may find this helpful or interesting in some way.
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