As I begin typing this, I realize it has been exactly two months since I miscarried what would have been our fourth child. Oddly, it seems like a lifetime ago, but I find that part of my heart is still tender when I think about it. Days have gone by when I haven't thought about it at all, but most days, I think about it at least for a moment. Yesterday morning while driving to church, I thought about my baby in heaven and in my mind I heard, "Today I would have been 17 weeks. I'd have already been feeling our baby move and kick, and we'd be finding out the gender within the next few weeks..." It's hard not to think that way, to go through the what-ifs and maybes and what-would-have-beens.
For the month of November, I decided to take a break from Facebook. Even though it is my link to everyone--and Lord knows I need some adult interaction and social connection considering I'm home all day every day with three small kids--it was making me depressed. I literally know a dozen different women who are pregnant and due between the months of March and June, and although I am happy for their joy, it was like pouring salt into my wound every time I would see a post related to their pregnancies. Maybe that seems hateful or unwarranted, considering I have children and can clearly conceive and carry a child, but something happens to a woman when they miscarry, no matter if they have no children or a Duggar-sized family. And I just. Couldn't. Take. Anymore. It was similar to being in a hot, cramped room, where you feel like you're suffocating and feel as though you might faint at any moment. That's how I felt. I had to get out of there.
Truth: Being away from Facebook, even though it's only been a week or so, has helped tremendously. I've been able to think about other things. I've been reading more, both from the Bible and from books I've been wanting to get around to reading. I've been more attentive to my children (not that I wasn't before, but without the added distraction of Facebook, I feel like I've been transferring that extra attention to them). I've been working on my homemade Christmas gifts as well. Oh, and blogging, obviously, which I always wish to do more of but "never get around to".
Of course I realize that I can not completely avoid the things that trigger my emotions regarding the miscarriage. Reminders are going to be inevitable. Like when I hang out with one of my close friends who is expecting. Like when I am in public and see big, round, pregnant bellies. Like when my daughter tells a relative or a friend or even a perfect stranger, "My mommy was going to have a baby, but the baby died."
With it being the month of Thanksgiving, I have been reminded to count my blessings and not my tears and try not to dwell in the things that I can not change nor control. I stumbled upon a quote by C. S. Lewis the other day that really struck me, and it truly sums up my feelings of late: "We are not necessarily doubting that God will do what is best for us; we are wondering how painful the best will turn out to be." My prayer is that no matter how this all plays out, no matter what God's ultimate plan is, I will be able to look back and clearly see the ways God was at work and realize that in my own internal darkness, the light had been there all along.
Monday, November 11, 2013
Tuesday, September 24, 2013
The Turning Point in the Tragedy
My recent miscarriage, though tragic and life-changing, was an unexpected reminder than I need to take care of myself. Was my miscarriage my fault? Not at all. Was there anything I could have done differently to prevent it? No, at least not according to research. But it still made me think about the fact that in order to give a baby the best possible chance to grow, I have to make sure I'm being as healthy as I can be.
I don't expect or even desire to lose a ton of weight over the next few weeks and months. Why would I want to when I know we'll want to try again to get pregnant in the near future? I lost nearly fifty pounds before conceiving my third child and still have about twenty pounds to go before I get back to that pre-pregnancy weight. I even exercised regularly all through that pregnancy (and didn't with my first two), but finding the time and the motivation after having three children has been the issue. I'll admit it: I am completely spent most days, so the thought of exercising is not appealing much of the time. I always feel awesome afterward physically, and mentally I feel accomplished, but actually making myself do it feels like just another chore I have to get done during my already jam-packed days.
So I'm just making small changes and am aiming to lose about ten pounds by Halloween. I'm slowly phasing caffeine and excess sugar from my diet (and if you know me, you know how much I love my sweet tea, which has both). I know it's going to make me healthier in the long run and also create a more ideal place in which a baby can grow once Matt and I feel the time is right to try again. I'm not going to get crazy with the exercise (like doing CrossFit with my husband, which has helped trim him down and build up his muscle) because I don't want to burn myself out. For now, I'm just going to do regular walking (and maybe some jogging and *gasp* a little bit of running), and I'll rely on my treadmill a lot of the time. I may throw in some water aerobics classes here and there at our local civic center when I can go because I genuinely enjoy it, and it is a great calorie-burner.
Aside from the physical aspects, exercise has been a great benefit mentally and emotionally. My moods are better overall when I exercise regularly, so I know it will help me get through the grief of the miscarriage that much better.
I pray I will be able to come back here and post the first of November to share if I have met (or maybe even exceeded) my goal. And if you've recently been through a miscarriage yourself, or any tragedy, for that matter, try to find something positive to focus on that will help keep your mind busy. It won't make you forget--nothing will--but I believe in the long run, doing something good that stemmed from an unhappy experience is probably not a bad thing.
I don't expect or even desire to lose a ton of weight over the next few weeks and months. Why would I want to when I know we'll want to try again to get pregnant in the near future? I lost nearly fifty pounds before conceiving my third child and still have about twenty pounds to go before I get back to that pre-pregnancy weight. I even exercised regularly all through that pregnancy (and didn't with my first two), but finding the time and the motivation after having three children has been the issue. I'll admit it: I am completely spent most days, so the thought of exercising is not appealing much of the time. I always feel awesome afterward physically, and mentally I feel accomplished, but actually making myself do it feels like just another chore I have to get done during my already jam-packed days.
So I'm just making small changes and am aiming to lose about ten pounds by Halloween. I'm slowly phasing caffeine and excess sugar from my diet (and if you know me, you know how much I love my sweet tea, which has both). I know it's going to make me healthier in the long run and also create a more ideal place in which a baby can grow once Matt and I feel the time is right to try again. I'm not going to get crazy with the exercise (like doing CrossFit with my husband, which has helped trim him down and build up his muscle) because I don't want to burn myself out. For now, I'm just going to do regular walking (and maybe some jogging and *gasp* a little bit of running), and I'll rely on my treadmill a lot of the time. I may throw in some water aerobics classes here and there at our local civic center when I can go because I genuinely enjoy it, and it is a great calorie-burner.
Aside from the physical aspects, exercise has been a great benefit mentally and emotionally. My moods are better overall when I exercise regularly, so I know it will help me get through the grief of the miscarriage that much better.
I pray I will be able to come back here and post the first of November to share if I have met (or maybe even exceeded) my goal. And if you've recently been through a miscarriage yourself, or any tragedy, for that matter, try to find something positive to focus on that will help keep your mind busy. It won't make you forget--nothing will--but I believe in the long run, doing something good that stemmed from an unhappy experience is probably not a bad thing.
Thursday, September 12, 2013
The Story of my Miscarriage
Growing up, writing was always a form of therapy for me. I could get lost in the world I had created for my characters and forget the things in life that were bothering me. So in the midst of the grief and loss I experienced with my recent miscarriage, I knew I wanted to write my story, not only to help myself heal and not just to help others who are desperate to make sense of their own miscarriages, but because it's the only memory I'll have of the child I never got to meet this side of heaven.
My husband and I already have three amazing children. You can read all about them throughout this blog. Our daughter, who is also the oldest and the only girl, would ask about having a sister from time to time. We knew we wanted to have a fourth and final child, but we hadn't really decided when we would start trying. Obviously, we know there's no guarantee we'd have another girl just to appease our eldest, but I'd be lying if I said I wasn't hopeful to have another girl so we'd have two of each.
In June, I had my IUD (intra-uterine device) removed because of a bothersome ovarian cyst that had grown; the IUD didn't cause the cyst, but they don't prevent them like traditional birth control pills do. I had read some stories online from others who had developed cysts while they had an IUD that went away right after having their IUD removed, so we figured between the cyst and knowing we wanted to try for a fourth child in the near future, it couldn't hurt to have it removed.
I didn't think we'd conceive right away; I had had an IUD placed after having my second child, and it took several months after its removal to conceive our third child. So I was quite surprised when, just over a month later when I still hadn't started my period, I got a positive pregnancy test. Surprised as I was at the quickness of everything, I was still ecstatic and waited until my husband got home from work that evening to share the news. I was thrilled to be able to tell him we were expecting for the fourth time.
I happened to be going in for an ultrasound the next day to check on the size of the cyst (making sure it had either resolved or was resolving, i.e. getting smaller), and I told the ultrasound tech that I had a positive pregnancy test but that she probably wouldn't see anything because, by my calculations, I should only be about 4.5 weeks along. Sure enough, all she saw was the thick uterine lining. The gestational sac normally can't be seen until at least the fifth week.
Long story short, they did a blood test to confirm pregnancy and then did another two days later to check that my hormone levels were going up as they should be. When everything came back normal, I felt more relaxed and looked forward to enjoying what I had assumed would be my final pregnancy. My first ob appointment and ultrasound were scheduled for three weeks after that, on September 9. I was excited about the ultrasound because at that point, I should have been right at eight weeks pregnant, and they'd be able to see the tiny baby and the heartbeat, plus give me a definitive due date because I didn't have an LMP by which to calculate.
Pregnancy symptoms hit around six weeks. For me, that was pretty much just nausea, fatigue, and sore breasts, all of which I'd experienced with my prior three pregnancies. I never had a physical reason to believe that anything might be wrong.
On the evening of Friday, September 6, I went to the bathroom to find I was spotting. It wasn't a lot, and it was brown and later pink, both of which are "good" signs if you happen to bleed during your first trimester, which is quite common. I told myself not to worry too much since it's a normal thing that happens sometimes and that perhaps I'd just done too much that day. I'd been on a pretty major cleaning spree and was even busier than I normally am throughout the week. I talked to the obstetrician who was on call that evening, who told me to relax and put my feet up and drink a lot of water, which I later found really doesn't make much difference, it just slows your bleeding down. Essentially, if you're going to miscarry, it's going to happen no matter what you do. He also told me that if I was cramping and/or bleeding heavily to go the ER. Part of me wanted to go the ER just to have them do an ultrasound to check on everything, but the bigger part of me didn't want to face it if I were, in fact, miscarrying. I told myself I could wait it out until Monday, when my appointment was scheduled, even though I knew it was going to be a very long wait emotionally.
On Saturday morning, I hadn't bled too much overnight, but I'd also been asleep, and both laying down and being still slows the bleeding. Once I was up and moving, the bleeding increased and was now red, the color of fresh blood, and I was definitely worried at this point. I must have gone to the bathroom every hour, if not more often, to check to see if I was still bleeding. It wasn't incredibly heavy, but it was consistent and not letting up. I was also passing small clots. Even though I was about 90% sure this was the start of a miscarriage, I kept trying to remind myself that nothing was certain and that the baby could be completely fine. Thinking it would help, I googled things like "miscarriage signs" and "bleeding in the first trimester". Some of the stories I found were encouraging and gave me some hope, while others were accounts of the exact thing I was hoping I wasn't experiencing. I looked up things like "placental lakes" and "subchorionic hematoma" and "breakthrough bleeding" that were referenced on some of the posts I'd found that can all cause bleeding in early pregnancy. I even thought perhaps my ovarian cyst was causing the problem. I was desperate for answers, though I knew it was only making me crazier and more worried and confused.
I knew if I sat at home all day, I would only torture myself thinking over all the possibilities in my head. So we decided to try to go about our day as we normally would. We ran a few errands and did some grocery shopping. We were only out a few hours, and I could feel myself continuously bleeding. My lower back was starting to ache somewhat, and I felt slightly crampy in my abdomen, but I wasn't sure if it was real or subconscious. In the meantime, I prayed and prayed to God to let our baby be ok, to please not take him or her away, that we were all so excited to welcome him or her into the family. I begged and pleaded and bargained, even though I know God doesn't work that way.
On Sunday, we went to church as usual, where I kept my composure minus one small meltdown, and I had some plans that afternoon, which I ended up keeping despite my emotional state. I thought it would help get my mind off things for a short time, which it did. But for the rest of the evening, I was just a mess. I was scared about what we would find out on Monday on the ultrasound and knew I'd be a basket case if we found out our baby hadn't made it. As I scared as I was for the outcome, the feeling of not knowing at all at this point was even worse.
Monday morning dragged on, but I tried to stay as busy as I could. I homeschooled my older two kids just like any other normal Monday. My husband Matt had called out of work to be able to go with me, thankfully. My sister came to stay with our kids after lunch while Matt and I headed to the doctor's office. My ultrasound was scheduled first and would be followed by my appointment with my doctor. When the ultrasound tech called my name, I was ok until we walked into the room, where I broke down in front of her as I was telling her that I'd been bleeding all weekend. She calmly said that everything could still be ok, that bleeding was very common and that some women go onto have healthy pregnancies and healthy babies despite the bleeding. She did the initial transabdominal ultrasound and took some images, then allowed me to empty my bladder before moving on to the transvaginal ultrasound. After coming back into the room to do the transvaginal ultrasound, she told me that I should save my questions for the doctor because I would probably have questions she couldn't answer. I knew from her statement that her findings were not good with the abdominal ultrasound, and I prepared myself for the worst as she began the next one.
I watched the screen as she looked and typed and measured, and I wasn't seeing anything that resembled a baby. Having had my fair share of ultrasounds, I knew what to look for, and it just wasn't there. Finally, I looked away and started silently crying again as my husband held my hand. She was finished before I wanted her to be. I wanted her to be wrong. I wanted her to go back and be sure that my baby wasn't there. I wanted it to all be a mistake. But I knew it wasn't, and I covered my eyes and cried so hard it hurt inside.
What followed was one of the worst parts of the day: having to go back into the waiting room and wait again for the visit with the doctor. I had to walk into a room of people with my emotions written all over my face. I'm not sure what I expected. It's not like they have a special room for patients who miscarry, or a teleporting machine that will zap us anywhere but in front of the eyes of a dozen strangers.
So we waited until the nurse called me back, who I remember taking my blood pressure and apologizing for our loss, and then we waited a while for the doctor. I don't remember how long. I just remember I was crying, and Matt had been crying quietly, and he held me for a long time, and I cried until I thought I'd run out of tears, and then cried more. I told him I was sorry for losing our baby, to which he told me to never think that it was my fault. I said a lot of things, trying to make sense of it, trying to work through the confusion and grief that had consumed my entire body and clouded my mind. I can not pinpoint another time in my life when I've ever felt the way I did that day, in those moments. It was like I was drowning, gasping for air, trying to see my way through a fog, but could find no way out of any of it. There are no words to describe the amount of pain and heartache I felt.
The doctor finally came in with a solemn look and went over my recent history to make sure he was up to date on everything. He explained that the ultrasound showed a very small gestational sac and placental tissue but no embryo or yolk sac. He explained I had what is called a "blighted ovum." I later had to look this up because trying to listen and understand and mentally process was a struggle at this point. A blighted ovum, or anembryonic pregnancy, is defined as "a fertilized egg that implants but does not develop. The gestational sac continues to grow but the baby does not grow within the sac. If the case is a true blighted ovum, the yolk and fetal pole will not be present." Given this diagnosis, which I also read is very common and accounts for half or more of early miscarriages, I felt that if I shared this information with others that people would dismiss my grief and wonder why I was so upset since there wasn't a baby to begin with, which is not true at all. An egg was fertilized and implanted, it just didn't develop beyond that. I was still pregnant. My husband and I created a life together that I carried in my body, even if only for a short time. It only takes a pink line on a stick to make you instantly form a bond with that tiny life, which was never insignificant, no matter how "undeveloped".
The doctor went over my options: I could go home and wait to pass everything naturally (the sac and tissue from the placenta), or I could have a D and C (dilatation and curettage), a quick and minor surgery where they put you to sleep and dilate your cervix, then clean everything out. Because I was worried that passing it naturally at home might be difficult to do with the kids around, and I didn't want them to be scared or worried if I was in a lot of pain, I initially leaned toward doing the D and C. My doctor went over the details of the D and C and told me we could think it over and call the next day if that's what we chose to do.
On the way home, I called my mom, then I called my sister to let her know we were on our way home since she was there with our three children. I cried to my mom; I don't remember everything I said. A lot of Monday was a blur and haze after that. I was so consumed with grief that it was hard to think clearly about anything. Once we got home, we had to tell our kids, particularly our older two, since the youngest, being only two, was unaware of any of it. Our older two already somewhat understood what had been going on; my emotional state over the weekend forced me to tell them that the baby might be sick. My daughter immediately asked if the baby was indeed sick, and I told her yes. I told her that Jesus took the baby to heaven. She looked at me with disappointment and said, "The baby died?" I said yes again with tears in my eyes, trying to keep myself together for my kids' sake. She then something about her Nana (my husband's mother, who passed away earlier this year) getting to take care of our baby in heaven. And I could tell she was at peace with this. If only we as adults could share this black and white perspective and have the faith of a child, which is what God hopes for all of His children.
Most of the night, I just wanted to lay around on the couch and not do anything, even though it meant I was constantly thinking about it and reliving it and crying all over again. Maybe it wasn't helpful, but I didn't know what else to do. My sister had offered to take our kids to play at the park and to get some dinner that evening; I'm not sure if I thanked her or not, but I'm glad she did. It may sound bad, but being around everyone just added to the pain, I guess because I was watching life continue to go on even though my world was falling apart. Being around my children was bittersweet that evening because although I was grateful to have these three blessings, it already felt like someone was missing, like something was off. They'd never know their brother or sister, and all those images I'd created in my mind of what the future with four children held had instantly vanished.
While I was by myself, I felt a need to talk to someone, so I called my friend Shelly, who has been through multiple miscarriages. Knowing she has been through this situation, and more than once, and knowing she has overcome them and still remains strong, gave me hope and the reassurance that, yes, I'm going to be ok. I knew I would have to take it one second...one minute...one hour...one day at a time. Somewhere in our conversation we discussed if I was going to choose to let the miscarriage happen naturally or if I should go through with the D and C. Shelly has done both and preferred the natural way. The more I thought about it, the more I knew I needed to research my options and figure out what would be best for me.
So later on, with a clearer head, I read some articles and stories from other women who had let their miscarriages occur naturally at home without medical intervention. Physically, I knew I could get through it because the pain was supposed to be nothing more than strong menstrual cramps, and unless I started to bleed heavily or feel faint or run a fever, there was no need to seek medical help. My body has carried and birthed three children naturally, it has done what God designed the female body to be able to do, so I felt confident my body would know what to do with what remained of my pregnancy. I had to ask myself if I could emotionally handle it, and the answer was yes. I wanted to go through it, to feel everything I could, and hold it in my heart forever. I didn't want to be put to sleep in a hospital with what remained of the life inside me one minute only to wake up and it be gone without a memory of the final moments. Maybe it's hard for some to understand; I'm sure there are some women who just want it done and over with and don't want to remember it. To each her own. My choice was just that: mine.
I remember being so ready to go to bed that Monday night because I knew that I wouldn't have to think about it while I was asleep, that I could get six or seven hours of peaceful oblivion. In the morning, when I woke up, I felt at peace for a mere few seconds before the realization hit me like lightening: you lost your baby. I heard Emberlynn calling from across the house, as she does nearly every morning, for me to come unhook her from her feeding tube. I had to force myself out of bed, telling myself that I didn't have a choice. If not for my kids, I'd have laid in that bed all day, wallowing and reliving the day before, screaming inside and crying and feeling sorry for myself. In essence, my kids were my reason to go on, my proverbial kick in the behind, because they needed me.
The normal tasks to which I've become accustomed--the everyday, typical, basically mindless things--were hard for me to do that next day. It was just hard to care about anything. I just went through the motions, making meals for my kids, cleaning up messes, doing the laundry. Nothing felt right. Everything around me lost its color, its vibrancy. Foods lost their taste, what little I ate. I broke down in front of my kids more times than I want to remember, but maybe it was ok for them to see the grief, to understand that sometimes crying and being hysterical is part of healing, and that it's ok to feel that way. They kept asking if I was still sad when I wasn't crying, and I'd say, Yes, I'm still sad, and I'll probably be sad for a while. I snapped at them more than I wished to, feeling guilty afterward each time.
Sometime that morning, I had phoned my doctor's office to let them know I had chosen to let everything pass naturally at home, and although I'd done my research, I wanted to hear from them what to expect, how long it might take, when I should follow up...I felt like a robot asking them my list of questions that I'd rehearsed in my mind with the intention of not wanting to cry on the phone. I did anyway, for a brief time, before composing myself and continuing with my questions. They said within seven to ten days from the start of the bleeding, I should expect my bleeding to increase, to feel cramping a little more intense than menstrual cramps, and tissue to pass. Once that happened, my bleeding should slow down and continue for just a few more days. Given this information, I expected I should pass everything sometime over the weekend, for which I was grateful since Matt would be home.
When Matt arrived home Tuesday evening, I cried in his arms and was just so relieved for him to be there. With everything still being fresh and raw, it had been a hard day, and I needed him to comfort me and tell me it was all going to be ok. We talked a lot that evening and cried together, prayed together, and just held each other. In my heart, I thanked God for this strong, faithful man He has given me with which to share my life, who lifts me up, and who helps me remember His grace and love when my eyes are blinded by darkness. This was also the night we decided to share our loss publicly, since at the time only close family and friends were aware. I struggled with doing this because, for whatever reason, I felt ashamed to admit I had lost a child. Miscarriage is so common, yet there is a stigma attached to it. As Shelly had put it, you almost feel embarrassed to talk about it, like we have failed at something. Once I began telling people about it, the support we received and the magnitude of prayers being lifted up for us was overwhelming, and several women revealed they had experienced miscarriages as well, which I would probably have never discovered had I not shared my own. I felt more at peace because I didn't have to hide anything anymore, and I could allow myself to start the healing process.
On Wednesday, I didn't feel as weighed down by it as I had the day before. I think having everything out in the open and knowing that people had been and were continuing to pray for us was what helped push me to press on. I didn't cry at the drop of a hat like I had the past couple of days. I was able to smile at things a little more. I was trying to take in and soak up the good and positive moments with my family, reminding myself that life goes on and things will slowly get better, day by day.
*The next part of my story may not be for the faint of heart.* It was the middle of the day Wednesday that I went to the bathroom, and something felt a little off. I barely pushed down as if I was pushing out a baby, and out slid something larger than normal. It felt similar to birthing a baby, but on a much, much smaller scale, and without the pain. In fact, I hadn't felt any pain at all. I wondered if it was a very large clot, since I had been passing small clots on and off for the last several days. I examined what had passed to find that it was a good-size piece of tissue, probably three to four inches in length, and judging by the looks, I believe it was the placenta. For the remainder of the day, I barely bled, which was very different than what I had been experiencing in the days leading up to it. When nothing else happened and my bleeding continued to be minimal, I felt I could safely assume that I had passed the tiny gestational sac without realizing it (I most likely mistook it for a clot), and the placenta had come later on. I was surprised I had experienced no pain and no excessive bleeding leading up to it. But it did give me the closure I felt I needed.
When I woke up that next Monday morning, I realized after a little while that it was the first morning the miscarriage hadn't been the very first thing on my mind. I didn't know how to feel about that. I knew I wasn't forgetting about it; I'm quite sure no one ever forgets these kinds of experiences. If nothing else, the pain forever etches into our souls, like an ever-present scar that you don't constantly look at but notice from time to time and remember exactly how it got there. I will never forget my fourth baby, who shared my body and my blood, who was a part of me and part of Matt, but who never even got to have a heartbeat or take a breath, and who will never have a name.
I believe one day, when God calls me home, I will meet this child that never got to have a life on earth, but who will have existed blissfully in heaven with no worries, no pain, not a care in the world, being held in the arms of Jesus. And I imagine when this day comes, my child will be saying, "Here I am, Mommy. You don't have to be sad anymore. I've been here all along."
My husband and I already have three amazing children. You can read all about them throughout this blog. Our daughter, who is also the oldest and the only girl, would ask about having a sister from time to time. We knew we wanted to have a fourth and final child, but we hadn't really decided when we would start trying. Obviously, we know there's no guarantee we'd have another girl just to appease our eldest, but I'd be lying if I said I wasn't hopeful to have another girl so we'd have two of each.
In June, I had my IUD (intra-uterine device) removed because of a bothersome ovarian cyst that had grown; the IUD didn't cause the cyst, but they don't prevent them like traditional birth control pills do. I had read some stories online from others who had developed cysts while they had an IUD that went away right after having their IUD removed, so we figured between the cyst and knowing we wanted to try for a fourth child in the near future, it couldn't hurt to have it removed.
I didn't think we'd conceive right away; I had had an IUD placed after having my second child, and it took several months after its removal to conceive our third child. So I was quite surprised when, just over a month later when I still hadn't started my period, I got a positive pregnancy test. Surprised as I was at the quickness of everything, I was still ecstatic and waited until my husband got home from work that evening to share the news. I was thrilled to be able to tell him we were expecting for the fourth time.
I happened to be going in for an ultrasound the next day to check on the size of the cyst (making sure it had either resolved or was resolving, i.e. getting smaller), and I told the ultrasound tech that I had a positive pregnancy test but that she probably wouldn't see anything because, by my calculations, I should only be about 4.5 weeks along. Sure enough, all she saw was the thick uterine lining. The gestational sac normally can't be seen until at least the fifth week.
Long story short, they did a blood test to confirm pregnancy and then did another two days later to check that my hormone levels were going up as they should be. When everything came back normal, I felt more relaxed and looked forward to enjoying what I had assumed would be my final pregnancy. My first ob appointment and ultrasound were scheduled for three weeks after that, on September 9. I was excited about the ultrasound because at that point, I should have been right at eight weeks pregnant, and they'd be able to see the tiny baby and the heartbeat, plus give me a definitive due date because I didn't have an LMP by which to calculate.
Pregnancy symptoms hit around six weeks. For me, that was pretty much just nausea, fatigue, and sore breasts, all of which I'd experienced with my prior three pregnancies. I never had a physical reason to believe that anything might be wrong.
On the evening of Friday, September 6, I went to the bathroom to find I was spotting. It wasn't a lot, and it was brown and later pink, both of which are "good" signs if you happen to bleed during your first trimester, which is quite common. I told myself not to worry too much since it's a normal thing that happens sometimes and that perhaps I'd just done too much that day. I'd been on a pretty major cleaning spree and was even busier than I normally am throughout the week. I talked to the obstetrician who was on call that evening, who told me to relax and put my feet up and drink a lot of water, which I later found really doesn't make much difference, it just slows your bleeding down. Essentially, if you're going to miscarry, it's going to happen no matter what you do. He also told me that if I was cramping and/or bleeding heavily to go the ER. Part of me wanted to go the ER just to have them do an ultrasound to check on everything, but the bigger part of me didn't want to face it if I were, in fact, miscarrying. I told myself I could wait it out until Monday, when my appointment was scheduled, even though I knew it was going to be a very long wait emotionally.
On Saturday morning, I hadn't bled too much overnight, but I'd also been asleep, and both laying down and being still slows the bleeding. Once I was up and moving, the bleeding increased and was now red, the color of fresh blood, and I was definitely worried at this point. I must have gone to the bathroom every hour, if not more often, to check to see if I was still bleeding. It wasn't incredibly heavy, but it was consistent and not letting up. I was also passing small clots. Even though I was about 90% sure this was the start of a miscarriage, I kept trying to remind myself that nothing was certain and that the baby could be completely fine. Thinking it would help, I googled things like "miscarriage signs" and "bleeding in the first trimester". Some of the stories I found were encouraging and gave me some hope, while others were accounts of the exact thing I was hoping I wasn't experiencing. I looked up things like "placental lakes" and "subchorionic hematoma" and "breakthrough bleeding" that were referenced on some of the posts I'd found that can all cause bleeding in early pregnancy. I even thought perhaps my ovarian cyst was causing the problem. I was desperate for answers, though I knew it was only making me crazier and more worried and confused.
I knew if I sat at home all day, I would only torture myself thinking over all the possibilities in my head. So we decided to try to go about our day as we normally would. We ran a few errands and did some grocery shopping. We were only out a few hours, and I could feel myself continuously bleeding. My lower back was starting to ache somewhat, and I felt slightly crampy in my abdomen, but I wasn't sure if it was real or subconscious. In the meantime, I prayed and prayed to God to let our baby be ok, to please not take him or her away, that we were all so excited to welcome him or her into the family. I begged and pleaded and bargained, even though I know God doesn't work that way.
On Sunday, we went to church as usual, where I kept my composure minus one small meltdown, and I had some plans that afternoon, which I ended up keeping despite my emotional state. I thought it would help get my mind off things for a short time, which it did. But for the rest of the evening, I was just a mess. I was scared about what we would find out on Monday on the ultrasound and knew I'd be a basket case if we found out our baby hadn't made it. As I scared as I was for the outcome, the feeling of not knowing at all at this point was even worse.
Monday morning dragged on, but I tried to stay as busy as I could. I homeschooled my older two kids just like any other normal Monday. My husband Matt had called out of work to be able to go with me, thankfully. My sister came to stay with our kids after lunch while Matt and I headed to the doctor's office. My ultrasound was scheduled first and would be followed by my appointment with my doctor. When the ultrasound tech called my name, I was ok until we walked into the room, where I broke down in front of her as I was telling her that I'd been bleeding all weekend. She calmly said that everything could still be ok, that bleeding was very common and that some women go onto have healthy pregnancies and healthy babies despite the bleeding. She did the initial transabdominal ultrasound and took some images, then allowed me to empty my bladder before moving on to the transvaginal ultrasound. After coming back into the room to do the transvaginal ultrasound, she told me that I should save my questions for the doctor because I would probably have questions she couldn't answer. I knew from her statement that her findings were not good with the abdominal ultrasound, and I prepared myself for the worst as she began the next one.
I watched the screen as she looked and typed and measured, and I wasn't seeing anything that resembled a baby. Having had my fair share of ultrasounds, I knew what to look for, and it just wasn't there. Finally, I looked away and started silently crying again as my husband held my hand. She was finished before I wanted her to be. I wanted her to be wrong. I wanted her to go back and be sure that my baby wasn't there. I wanted it to all be a mistake. But I knew it wasn't, and I covered my eyes and cried so hard it hurt inside.
What followed was one of the worst parts of the day: having to go back into the waiting room and wait again for the visit with the doctor. I had to walk into a room of people with my emotions written all over my face. I'm not sure what I expected. It's not like they have a special room for patients who miscarry, or a teleporting machine that will zap us anywhere but in front of the eyes of a dozen strangers.
So we waited until the nurse called me back, who I remember taking my blood pressure and apologizing for our loss, and then we waited a while for the doctor. I don't remember how long. I just remember I was crying, and Matt had been crying quietly, and he held me for a long time, and I cried until I thought I'd run out of tears, and then cried more. I told him I was sorry for losing our baby, to which he told me to never think that it was my fault. I said a lot of things, trying to make sense of it, trying to work through the confusion and grief that had consumed my entire body and clouded my mind. I can not pinpoint another time in my life when I've ever felt the way I did that day, in those moments. It was like I was drowning, gasping for air, trying to see my way through a fog, but could find no way out of any of it. There are no words to describe the amount of pain and heartache I felt.
The doctor finally came in with a solemn look and went over my recent history to make sure he was up to date on everything. He explained that the ultrasound showed a very small gestational sac and placental tissue but no embryo or yolk sac. He explained I had what is called a "blighted ovum." I later had to look this up because trying to listen and understand and mentally process was a struggle at this point. A blighted ovum, or anembryonic pregnancy, is defined as "a fertilized egg that implants but does not develop. The gestational sac continues to grow but the baby does not grow within the sac. If the case is a true blighted ovum, the yolk and fetal pole will not be present." Given this diagnosis, which I also read is very common and accounts for half or more of early miscarriages, I felt that if I shared this information with others that people would dismiss my grief and wonder why I was so upset since there wasn't a baby to begin with, which is not true at all. An egg was fertilized and implanted, it just didn't develop beyond that. I was still pregnant. My husband and I created a life together that I carried in my body, even if only for a short time. It only takes a pink line on a stick to make you instantly form a bond with that tiny life, which was never insignificant, no matter how "undeveloped".
The doctor went over my options: I could go home and wait to pass everything naturally (the sac and tissue from the placenta), or I could have a D and C (dilatation and curettage), a quick and minor surgery where they put you to sleep and dilate your cervix, then clean everything out. Because I was worried that passing it naturally at home might be difficult to do with the kids around, and I didn't want them to be scared or worried if I was in a lot of pain, I initially leaned toward doing the D and C. My doctor went over the details of the D and C and told me we could think it over and call the next day if that's what we chose to do.
On the way home, I called my mom, then I called my sister to let her know we were on our way home since she was there with our three children. I cried to my mom; I don't remember everything I said. A lot of Monday was a blur and haze after that. I was so consumed with grief that it was hard to think clearly about anything. Once we got home, we had to tell our kids, particularly our older two, since the youngest, being only two, was unaware of any of it. Our older two already somewhat understood what had been going on; my emotional state over the weekend forced me to tell them that the baby might be sick. My daughter immediately asked if the baby was indeed sick, and I told her yes. I told her that Jesus took the baby to heaven. She looked at me with disappointment and said, "The baby died?" I said yes again with tears in my eyes, trying to keep myself together for my kids' sake. She then something about her Nana (my husband's mother, who passed away earlier this year) getting to take care of our baby in heaven. And I could tell she was at peace with this. If only we as adults could share this black and white perspective and have the faith of a child, which is what God hopes for all of His children.
Most of the night, I just wanted to lay around on the couch and not do anything, even though it meant I was constantly thinking about it and reliving it and crying all over again. Maybe it wasn't helpful, but I didn't know what else to do. My sister had offered to take our kids to play at the park and to get some dinner that evening; I'm not sure if I thanked her or not, but I'm glad she did. It may sound bad, but being around everyone just added to the pain, I guess because I was watching life continue to go on even though my world was falling apart. Being around my children was bittersweet that evening because although I was grateful to have these three blessings, it already felt like someone was missing, like something was off. They'd never know their brother or sister, and all those images I'd created in my mind of what the future with four children held had instantly vanished.
While I was by myself, I felt a need to talk to someone, so I called my friend Shelly, who has been through multiple miscarriages. Knowing she has been through this situation, and more than once, and knowing she has overcome them and still remains strong, gave me hope and the reassurance that, yes, I'm going to be ok. I knew I would have to take it one second...one minute...one hour...one day at a time. Somewhere in our conversation we discussed if I was going to choose to let the miscarriage happen naturally or if I should go through with the D and C. Shelly has done both and preferred the natural way. The more I thought about it, the more I knew I needed to research my options and figure out what would be best for me.
So later on, with a clearer head, I read some articles and stories from other women who had let their miscarriages occur naturally at home without medical intervention. Physically, I knew I could get through it because the pain was supposed to be nothing more than strong menstrual cramps, and unless I started to bleed heavily or feel faint or run a fever, there was no need to seek medical help. My body has carried and birthed three children naturally, it has done what God designed the female body to be able to do, so I felt confident my body would know what to do with what remained of my pregnancy. I had to ask myself if I could emotionally handle it, and the answer was yes. I wanted to go through it, to feel everything I could, and hold it in my heart forever. I didn't want to be put to sleep in a hospital with what remained of the life inside me one minute only to wake up and it be gone without a memory of the final moments. Maybe it's hard for some to understand; I'm sure there are some women who just want it done and over with and don't want to remember it. To each her own. My choice was just that: mine.
I remember being so ready to go to bed that Monday night because I knew that I wouldn't have to think about it while I was asleep, that I could get six or seven hours of peaceful oblivion. In the morning, when I woke up, I felt at peace for a mere few seconds before the realization hit me like lightening: you lost your baby. I heard Emberlynn calling from across the house, as she does nearly every morning, for me to come unhook her from her feeding tube. I had to force myself out of bed, telling myself that I didn't have a choice. If not for my kids, I'd have laid in that bed all day, wallowing and reliving the day before, screaming inside and crying and feeling sorry for myself. In essence, my kids were my reason to go on, my proverbial kick in the behind, because they needed me.
The normal tasks to which I've become accustomed--the everyday, typical, basically mindless things--were hard for me to do that next day. It was just hard to care about anything. I just went through the motions, making meals for my kids, cleaning up messes, doing the laundry. Nothing felt right. Everything around me lost its color, its vibrancy. Foods lost their taste, what little I ate. I broke down in front of my kids more times than I want to remember, but maybe it was ok for them to see the grief, to understand that sometimes crying and being hysterical is part of healing, and that it's ok to feel that way. They kept asking if I was still sad when I wasn't crying, and I'd say, Yes, I'm still sad, and I'll probably be sad for a while. I snapped at them more than I wished to, feeling guilty afterward each time.
Sometime that morning, I had phoned my doctor's office to let them know I had chosen to let everything pass naturally at home, and although I'd done my research, I wanted to hear from them what to expect, how long it might take, when I should follow up...I felt like a robot asking them my list of questions that I'd rehearsed in my mind with the intention of not wanting to cry on the phone. I did anyway, for a brief time, before composing myself and continuing with my questions. They said within seven to ten days from the start of the bleeding, I should expect my bleeding to increase, to feel cramping a little more intense than menstrual cramps, and tissue to pass. Once that happened, my bleeding should slow down and continue for just a few more days. Given this information, I expected I should pass everything sometime over the weekend, for which I was grateful since Matt would be home.
When Matt arrived home Tuesday evening, I cried in his arms and was just so relieved for him to be there. With everything still being fresh and raw, it had been a hard day, and I needed him to comfort me and tell me it was all going to be ok. We talked a lot that evening and cried together, prayed together, and just held each other. In my heart, I thanked God for this strong, faithful man He has given me with which to share my life, who lifts me up, and who helps me remember His grace and love when my eyes are blinded by darkness. This was also the night we decided to share our loss publicly, since at the time only close family and friends were aware. I struggled with doing this because, for whatever reason, I felt ashamed to admit I had lost a child. Miscarriage is so common, yet there is a stigma attached to it. As Shelly had put it, you almost feel embarrassed to talk about it, like we have failed at something. Once I began telling people about it, the support we received and the magnitude of prayers being lifted up for us was overwhelming, and several women revealed they had experienced miscarriages as well, which I would probably have never discovered had I not shared my own. I felt more at peace because I didn't have to hide anything anymore, and I could allow myself to start the healing process.
On Wednesday, I didn't feel as weighed down by it as I had the day before. I think having everything out in the open and knowing that people had been and were continuing to pray for us was what helped push me to press on. I didn't cry at the drop of a hat like I had the past couple of days. I was able to smile at things a little more. I was trying to take in and soak up the good and positive moments with my family, reminding myself that life goes on and things will slowly get better, day by day.
*The next part of my story may not be for the faint of heart.* It was the middle of the day Wednesday that I went to the bathroom, and something felt a little off. I barely pushed down as if I was pushing out a baby, and out slid something larger than normal. It felt similar to birthing a baby, but on a much, much smaller scale, and without the pain. In fact, I hadn't felt any pain at all. I wondered if it was a very large clot, since I had been passing small clots on and off for the last several days. I examined what had passed to find that it was a good-size piece of tissue, probably three to four inches in length, and judging by the looks, I believe it was the placenta. For the remainder of the day, I barely bled, which was very different than what I had been experiencing in the days leading up to it. When nothing else happened and my bleeding continued to be minimal, I felt I could safely assume that I had passed the tiny gestational sac without realizing it (I most likely mistook it for a clot), and the placenta had come later on. I was surprised I had experienced no pain and no excessive bleeding leading up to it. But it did give me the closure I felt I needed.
When I woke up that next Monday morning, I realized after a little while that it was the first morning the miscarriage hadn't been the very first thing on my mind. I didn't know how to feel about that. I knew I wasn't forgetting about it; I'm quite sure no one ever forgets these kinds of experiences. If nothing else, the pain forever etches into our souls, like an ever-present scar that you don't constantly look at but notice from time to time and remember exactly how it got there. I will never forget my fourth baby, who shared my body and my blood, who was a part of me and part of Matt, but who never even got to have a heartbeat or take a breath, and who will never have a name.
I believe one day, when God calls me home, I will meet this child that never got to have a life on earth, but who will have existed blissfully in heaven with no worries, no pain, not a care in the world, being held in the arms of Jesus. And I imagine when this day comes, my child will be saying, "Here I am, Mommy. You don't have to be sad anymore. I've been here all along."
Saturday, August 17, 2013
The Promise Post
I can't believe it's been over a year since my last blog post. I mean, I can believe it, actually, because life is a bit busy, to say the least. Being a wife and mom in general is pretty demanding on its own, but throw in all the extra day to day responsibilities like CF care, homeschooling, keeping up with my direct sales businesses (Thirty-One and Origami Owl), and any other extra demands that come along, and you've got one tired mama who hardly gives blogging a second thought.
There will be days that I think, "Hey, I should totally go blog so I can write about [insert topic here]," but then it doesn't happen. And that makes me sad, because writing was always a passion of mine that got lost in the shuffle of motherhood. I know a lot of women tend to lose a little bit of themselves once they become moms. We sometimes forget about the things that make us who we are because we're focusing on taking care of our families. And don't get me wrong, I absolutely LOVE being a wife and a mother. There's nothing that could ever make me want anything more because there is nothing better. Nothing brings me more joy than taking care of my family.
Blogging is a way for me to be able to both write and also tell the story of my family. I know I won't remember every little moment, so it's good to have something concrete and tangible that we can come back to years later. I can read things I've written and laugh, cry, ponder, wonder, and just...remember.
So I've said it before (and I'm really going to try to stick with it this time): I am going to try to blog at least once a week. Even if it's only to say hi to my future self. Even if it's only to share something funny one of my kids said (which, let's be honest, my kids are hilarious). Even if it's to talk about something that made me cry, or brought me joy, or made me think about something differently.
And, hey, since I'm a dweeb, I may even be corny about my posts. Like if I post on Mondays, I could call it "Manic Monday" (although, everyday is pretty "manic" when you're a stay-at-home mom, right?). Or Tuesday Tidbits. And Thankful Thursday, or Thoughtful Thursday. Funny Friday? Hmm...this could be fun!
There will be days that I think, "Hey, I should totally go blog so I can write about [insert topic here]," but then it doesn't happen. And that makes me sad, because writing was always a passion of mine that got lost in the shuffle of motherhood. I know a lot of women tend to lose a little bit of themselves once they become moms. We sometimes forget about the things that make us who we are because we're focusing on taking care of our families. And don't get me wrong, I absolutely LOVE being a wife and a mother. There's nothing that could ever make me want anything more because there is nothing better. Nothing brings me more joy than taking care of my family.
Blogging is a way for me to be able to both write and also tell the story of my family. I know I won't remember every little moment, so it's good to have something concrete and tangible that we can come back to years later. I can read things I've written and laugh, cry, ponder, wonder, and just...remember.
So I've said it before (and I'm really going to try to stick with it this time): I am going to try to blog at least once a week. Even if it's only to say hi to my future self. Even if it's only to share something funny one of my kids said (which, let's be honest, my kids are hilarious). Even if it's to talk about something that made me cry, or brought me joy, or made me think about something differently.
And, hey, since I'm a dweeb, I may even be corny about my posts. Like if I post on Mondays, I could call it "Manic Monday" (although, everyday is pretty "manic" when you're a stay-at-home mom, right?). Or Tuesday Tidbits. And Thankful Thursday, or Thoughtful Thursday. Funny Friday? Hmm...this could be fun!
Wednesday, June 13, 2012
Just One Year
First, a frugal moment: That birthday crown my adorable child is wearing in the picture above cost me $.74 at Target last year. I bought it and saved it for this occasion. His bib was $.99 at Gymboree, and his birthday onesie (which he wasn't wearing in this shot; he was in his swimming attire), was a Carter's find at less than $3.
Now for the true purpose of this post: We celebrated Kyden's first birthday this past weekend. My little "baby sir" is already a year old! It doesn't feel very long ago when we were announcing that we were pregnant with Baby Anderson #3, who is now Anderson Kid #3. I remember being worried not because we didn't know if he would have CF but about what other people would say about it. I could feel the weight of others' judgments on my shoulders. But if we had chosen not to take a chance, if we had been too afraid to take on another with CF, or any other disease or disability, for that matter, we would not have received the gift of Kyden Isaiah, who is healthy and has given me the gift of hope. It's hard to explain in words, but it is the only way I can put it.
I made a promise to myself when he was born that I would take it more slowly this time, that I would take in every moment and revel in this new life we had been given so that as he grew, it wouldn't seem like it was going by so quickly. But now a year has gone by, and I feel like I only blinked, and I realize there is nothing you can really do to slow it down. The thief of time has once again snuck in behind me when I wasn't looking.
But even though he isn't that tiny baby I brought home from the hospital a year ago, what he has learned and achieved and discovered has been amazing to watch, even though I have been through this stage twice before. I don't think that could ever get old, no matter how many children you have. I miss how he would curl into a ball and sleep on my chest, and his gummy, toothless smiles, and the first laughs he ever echoed, but I love to watch him be silly, and interact with others, and show off his awesome little personality.
At his party, even though he wasn't feeling a hundred percent, he was still a sweet, smiley boy. My favorite part of the day was seeing him dig into his cake: a little hesitantly at first, then once he had a taste, he dove right in. When we opened gifts, he loved looking at his cards and "reading" them.
I'd say that I hope this next year doesn't go by so fast, but I know better than that. The thief of time may steal my minutes...my hours...my days...but it can not steal my memories, nor can it steal my joy. Happy Birthday to one of my greatest joys.
Thursday, May 24, 2012
Things that make me LOL
My kids are always doing and saying things to make me laugh. And all kids (or most kids, I should say) do the same thing, so I know it's nothing out of the ordinary. But don't you hate that moment when you start to tell your spouse/mom/sister/friend etc. about the hilarious thing one of your kids said or did and totally go blank on what it was? Yeah, I do that all the time.
At one time, I started doing this index card memory box thing: when one of the kids did something I wanted to remember or we did something special that day or I just wanted to record a particular memory, I would date an index card, write down whatever I wanted to record, then file it away in the box. I was really great about doing that almost every evening before bed until Kyden came along. I kept the box next to the bed, but because we had a newborn sleeping in our room (and still do, though he's not a newborn, because he still wakes up every 2 to 3 hours to nurse, which I fear will be habit until he goes off to college), my index card memory writing became very sparse, and now, I can't tell you when was the last time I recorded anything. I hate that, but thank goodness for Facebook's timeline and blogging, where I can easily look back to see all the things I have posted about the silliness of these Anderson kids, who are growing up much too fast and will eventually find all these silly sayings and musings embarrassing and eye-roll-worthy, at least until they reach adulthood and hopefully appreciate this tired mommy's efforts to preserve as many little moments and memories as I possibly could.
That said, I wanted to share some of the silly things that I've seen and heard around here lately. Yesterday, Cohen was eating lunch, and at one point he got up and went into his room (which was a big mess at the time). When he didn't return after a minute, I asked him what he was doing, to which he replied with a sigh, "Just looking at my disaster."
Kyden, though only just shy of a year, has his own silly personality and is surely following in the footsteps of his siblings. One day, I had put his shoes on him before heading out for the afternoon, and as I was gathering things together to leave, he pulled his shoes off and stuck them in the shoe bin by the front door (it's a big basket full of everyone's various pairs of shoes). Not only silly, but smart, that boy is! He also pulls out Mommy and Daddy's shoes and tries to wear them.
And finally, I have to share Emberlynn's "book" with you. She made this completely on her own yesterday with no help or prompting from me except when she needed help stapling all the pages together. So here is how her story goes (each sentence is on its own page complete with an illustration):
Title: Emberlynn and Kyden
"Kyden was a baby."
"Emberlynn was big."
"Go out and play now."
"One day Emberlynn made a mess." (She drew a picture of herself standing in a her messy room.)
"Lots of silly words she said." (Sounds like something Yoda would say.)
"Kyden loved Emberlynn."
"They have fun playing."
"Emberlynn was so nice to him."
"Emberlynn and Kyden go play."
"Emberlynn did clean her room now."
"Mommy gave him a snack." (She drew a really cute picture of Kyden in his high chair.)
"Then Mommy makes tea." (My favorite part.)
"And they live happily ever after." ("Happily" is spelled "habaly".)
This little book is definitely going in her baby book with her other keepsakes. And she reminds me of myself because I started writing stories and small books when I was about her age. Maybe she will have a love for writing like Mommy...
At one time, I started doing this index card memory box thing: when one of the kids did something I wanted to remember or we did something special that day or I just wanted to record a particular memory, I would date an index card, write down whatever I wanted to record, then file it away in the box. I was really great about doing that almost every evening before bed until Kyden came along. I kept the box next to the bed, but because we had a newborn sleeping in our room (and still do, though he's not a newborn, because he still wakes up every 2 to 3 hours to nurse, which I fear will be habit until he goes off to college), my index card memory writing became very sparse, and now, I can't tell you when was the last time I recorded anything. I hate that, but thank goodness for Facebook's timeline and blogging, where I can easily look back to see all the things I have posted about the silliness of these Anderson kids, who are growing up much too fast and will eventually find all these silly sayings and musings embarrassing and eye-roll-worthy, at least until they reach adulthood and hopefully appreciate this tired mommy's efforts to preserve as many little moments and memories as I possibly could.
That said, I wanted to share some of the silly things that I've seen and heard around here lately. Yesterday, Cohen was eating lunch, and at one point he got up and went into his room (which was a big mess at the time). When he didn't return after a minute, I asked him what he was doing, to which he replied with a sigh, "Just looking at my disaster."
Kyden, though only just shy of a year, has his own silly personality and is surely following in the footsteps of his siblings. One day, I had put his shoes on him before heading out for the afternoon, and as I was gathering things together to leave, he pulled his shoes off and stuck them in the shoe bin by the front door (it's a big basket full of everyone's various pairs of shoes). Not only silly, but smart, that boy is! He also pulls out Mommy and Daddy's shoes and tries to wear them.
And finally, I have to share Emberlynn's "book" with you. She made this completely on her own yesterday with no help or prompting from me except when she needed help stapling all the pages together. So here is how her story goes (each sentence is on its own page complete with an illustration):
Title: Emberlynn and Kyden
"Kyden was a baby."
"Emberlynn was big."
"Go out and play now."
"One day Emberlynn made a mess." (She drew a picture of herself standing in a her messy room.)
"Lots of silly words she said." (Sounds like something Yoda would say.)
"Kyden loved Emberlynn."
"They have fun playing."
"Emberlynn was so nice to him."
"Emberlynn and Kyden go play."
"Emberlynn did clean her room now."
"Mommy gave him a snack." (She drew a really cute picture of Kyden in his high chair.)
"Then Mommy makes tea." (My favorite part.)
"And they live happily ever after." ("Happily" is spelled "habaly".)
This little book is definitely going in her baby book with her other keepsakes. And she reminds me of myself because I started writing stories and small books when I was about her age. Maybe she will have a love for writing like Mommy...
Wednesday, May 2, 2012
April Clinic and the Kiddos
First, I want to say how much I appreciate everyone's prayers and concerns for Cohen (and for all three kids, for that matter) as we approached his and Emberlynn's recent clinic visit, which was last Thursday. Matt requested the day off when I made the appointment so that if the decision on the feeding tube surgery needed to be made, he would already be there with me. My sister Shauna graciously watched Kyden for us (a big thanks to her!) since he is now walking and would have had to be cooped up in a small exam room for two and a half hours, not to mention it gave Matt and me a chance to be able to focus just on Emberlynn and Cohen and talk to the nurses and doctors with minimal interruption.
In short, the biggest issue for Emberlynn and Cohen is and always has been their weights, or more specifically, their BMIs. They are supposed to be at or above the 50th percentile for BMI; poor weight gain and maitenance can be detrimental to their health because it affects lung function. For Emberlynn, the feeding tube helps tremendously by giving her extra calories via overnight feeds. We are not strangers to this, given that Emberlynn has had her g-tube for nearly five years now.
Cohen, as he has grown taller and gotten more active, has had trouble maintaining an "acceptable" BMI. He is not unhealthy or undernourished, and I have seen far skinnier kids, but those kids don't have CF, so it's not so much a concern for them. We have spent the last couple of months trying our best to "fluff" Cohen up (a term my friend Emily uses, which I kinda love) with extra calories in his meals and snacks plus supplementing with Pediasure and Boost Kids. I have weighed him every week, sometimes several times a week, especially during the last couple of weeks leading up to this last visit. He had put on two pounds, which was our goal, and then a week before the appointment, he got a virus (which Emberlynn and Kyden also picked up shortly thereafter). Go figure that the virus lasted a week and completely wiped out his appetite. He barely ate or drank, which caused him to drop over a pound. Once weighed at the clinic, it showed he had gained about a pound since his previous visit, which was not stellar but a step in the right direction, at least. It bumped him from the 33rd to the 41st percentile, which isn't too shabby, in my opinion. If he hadn't gotten sick, he would have been back above the 50th percentile. (The doctor actually asked me if Cohen could be faking sick since Emberlynn was also sick, but I told him Cohen was the one who was sick first, and no, he wasn't faking it. And as his parents, I think we would know. Sheesh.) Most importantly, we were able to "shelve" the feeding tube conversation for now.
As for Emberlynn, she lost a little bit of weight, but she also had the same virus as Cohen, causing her to have no appetite whatsoever (her appetite is not that great to begin with). We couldn't even use the feeding tube to help make up for everything because it was making her throw up. So now that she is over the funk, we are playing "catch-up" by putting her on her feeding tube six nights a week as opposed to five nights (per her dietician's instructions), which is what we have been doing for some time now.
Emberlynn and Cohen will have another clinic visit in two months instead of the normal three months to make sure their weight gain is good. As long as we can avoid another hiccup (like a week-long virus), I am optimistic they will receive good reports.
And now we come to Ky-Ky, who is growing up way too fast (you'd think I'd be used to that, right?). Yesterday, as I was browsing the dollar store, I found monkey-themed birthday party stuff, so I bought it for him seeing as his birthday is one month away. One month away! I mean, seriously, wasn't he just in my belly? Now he is walking(and running) and talking (he says "Dad", "Daddy", and "Hi") and eating whole bananas (since he refuses to eat it if I cut it into small pieces), among other "big boy" things. (But I sure would love if he learned this "big boy" thing called sleeping through the night. That would be awesome.) He is also still nursing, which is fine for now, but once he turns a year old, I'm afraid he won't be too keen on stopping. He loves the boobies, what can I say? But I suppose we will cross that bridge when we come to it, as they say.
In short, the biggest issue for Emberlynn and Cohen is and always has been their weights, or more specifically, their BMIs. They are supposed to be at or above the 50th percentile for BMI; poor weight gain and maitenance can be detrimental to their health because it affects lung function. For Emberlynn, the feeding tube helps tremendously by giving her extra calories via overnight feeds. We are not strangers to this, given that Emberlynn has had her g-tube for nearly five years now.
Cohen, as he has grown taller and gotten more active, has had trouble maintaining an "acceptable" BMI. He is not unhealthy or undernourished, and I have seen far skinnier kids, but those kids don't have CF, so it's not so much a concern for them. We have spent the last couple of months trying our best to "fluff" Cohen up (a term my friend Emily uses, which I kinda love) with extra calories in his meals and snacks plus supplementing with Pediasure and Boost Kids. I have weighed him every week, sometimes several times a week, especially during the last couple of weeks leading up to this last visit. He had put on two pounds, which was our goal, and then a week before the appointment, he got a virus (which Emberlynn and Kyden also picked up shortly thereafter). Go figure that the virus lasted a week and completely wiped out his appetite. He barely ate or drank, which caused him to drop over a pound. Once weighed at the clinic, it showed he had gained about a pound since his previous visit, which was not stellar but a step in the right direction, at least. It bumped him from the 33rd to the 41st percentile, which isn't too shabby, in my opinion. If he hadn't gotten sick, he would have been back above the 50th percentile. (The doctor actually asked me if Cohen could be faking sick since Emberlynn was also sick, but I told him Cohen was the one who was sick first, and no, he wasn't faking it. And as his parents, I think we would know. Sheesh.) Most importantly, we were able to "shelve" the feeding tube conversation for now.
As for Emberlynn, she lost a little bit of weight, but she also had the same virus as Cohen, causing her to have no appetite whatsoever (her appetite is not that great to begin with). We couldn't even use the feeding tube to help make up for everything because it was making her throw up. So now that she is over the funk, we are playing "catch-up" by putting her on her feeding tube six nights a week as opposed to five nights (per her dietician's instructions), which is what we have been doing for some time now.
Emberlynn and Cohen will have another clinic visit in two months instead of the normal three months to make sure their weight gain is good. As long as we can avoid another hiccup (like a week-long virus), I am optimistic they will receive good reports.
And now we come to Ky-Ky, who is growing up way too fast (you'd think I'd be used to that, right?). Yesterday, as I was browsing the dollar store, I found monkey-themed birthday party stuff, so I bought it for him seeing as his birthday is one month away. One month away! I mean, seriously, wasn't he just in my belly? Now he is walking(and running) and talking (he says "Dad", "Daddy", and "Hi") and eating whole bananas (since he refuses to eat it if I cut it into small pieces), among other "big boy" things. (But I sure would love if he learned this "big boy" thing called sleeping through the night. That would be awesome.) He is also still nursing, which is fine for now, but once he turns a year old, I'm afraid he won't be too keen on stopping. He loves the boobies, what can I say? But I suppose we will cross that bridge when we come to it, as they say.
Sunday, April 15, 2012
School, Soccer, and Such
So, as always, I have to start by talking about my kids, right? After all, they are my world.
Emberlynn has a mere twenty-nine days of school left (not counting weekends, of course), and then we get to take a little break for Summer before starting back up in July. She is already halfway through first grade curriculum, so sometime during the next school year, she will start on second grade material. This is one of the perks of homeschooling: the kids can get exactly what they need. If she was in kindergarten at school, she would be SO BORED, and I can only imagine how she'd be filling her time (getting up and down, socializing...in other words, getting into trouble). Despite the ups and downs and the emotional war I've had with homeschooling at times, I am extremely glad we chose this path. Being able to experience when my child learns something new and is intrigued by new information, not to mention learn how to read and read fluently, has been one of the most rewarding experiences of my life. Being the one to teach her all these new things is pretty awesome. My little gymnast will also be taking a break from gymnastics this Summer. She has expressed interest in soccer, and I believe they offer in locally in the Fall, so we may go that route for a little while.
Speaking of soccer, we have ourselves a little soccer superstar in the house by the name of Cohen. He started playing in March for the Spring season, and I'll admit, it didn't look promising at first. At his first couple of practices, he didn't want to do much of anything besides stand on the field or stand with me. His first game was awful; he cried pretty much the entire time, so getting on the field even just to run around with his other teammates was out of the question. (Two other kids were crying that day, so that made me feel a little better about the situation). I mean, after all, these are three and four-year-old kids we are talking about, most of which have never played any kind of organized sport.
A few days after his first game was his next practice, during which Matt was able to get on the field with Cohen for encouragement. This practice went extremely well, so we were hopeful that he would at least get on the field and not cry at his next game. We explained that during the game, Daddy wouldn't be allowed on the field, and Cohen understood. So at the second game a few days later, not only did Cohen cooperate and play, he scored FOUR goals! The first of the season for his team! We were BEYOND proud and thrilled. And it gave him just the confidence he needed because ever since, he has been Mr. Soccer Extraordinaire! At yesterday's game, even though he was tired and has been fighting a pretty nasty cold, he played almost the whole time and scored the first goal.
Mainly, I am just glad to have Cohen involved in something that is a good form of exercise (and good for his lungs) and gives him a chance to be social with other kids and learn cooperation and teamwork. Scoring goals is a great bonus, of course, and I'd be lying if I said I wasn't super proud of him.
And last, I certainly would not go without talking about my sweet Ky-Ky, who turned ten months old on April 9. I can not believe his first birthday is right around the corner. He has grown way too fast. For the last few weeks, he has been standing up from the floor all on his own and standing for long periods of time and also taking steps. And over the last few days alone, he has been trying to walk a lot more. I don't think it will be very long before he is officially walking; I am guessing it will be by the end of the month, if that long. He just looks so cute and little standing there because he is on the smaller side and just looks too little to be walking! But there's definitely no slowing that boy down! (*And in the midst of typing this blog, Kyden walked halfway across the room.)
Now that I am (temporarily) done talking about my kiddos, I wanted to talk about my new adventure on which I currently embarked. I became a Thirty-One consultant. Not familiar with Thirty-One? You can go here to learn more about it. It is a direct sales company (like Avon, Mary Kay, Pampered Chef, etc...you get the idea), and it is Christian-based, which was a big selling factor for me. (The name of the company comes from Proverbs 31.) I have never been the biggest fan of direct sales; I like to attend the parties, but a lot of times, I feel pressured to buy products I know I won't use. Then I fell in love with Thirty-One's stuff because it's all about storage and organization, which is right up my alley, but their stuff is also super cute and functional. Once I realized I pretty much wanted to buy everything in the catalog, I thought to myself, "As excited as I am about this stuff, I could probably sell it." I didn't become a consultant to make money, however. Sure, that part is a nice bonus, but my reason for becoming a consultant is to have a hobby for myself and an outlet that will give me a break from the everyday craziness. I get to hang out with other women and have adult conversation and just be me for a little while. So while my excitement and literal joy over this endeavor may seem silly or pointless and even annoying to others, the fact that I have a new found confidence and purpose makes it worth it to me.
That said, I have to add a request: If any of my readers (all, what is it, 11 of you? lol) would like to host a party, please let me know, and I would really, genuinely enjoy doing a party for you. I started out just hosting because it earned me free and discounted products, so it's an easy way to get some of their awesome stuff!
Emberlynn has a mere twenty-nine days of school left (not counting weekends, of course), and then we get to take a little break for Summer before starting back up in July. She is already halfway through first grade curriculum, so sometime during the next school year, she will start on second grade material. This is one of the perks of homeschooling: the kids can get exactly what they need. If she was in kindergarten at school, she would be SO BORED, and I can only imagine how she'd be filling her time (getting up and down, socializing...in other words, getting into trouble). Despite the ups and downs and the emotional war I've had with homeschooling at times, I am extremely glad we chose this path. Being able to experience when my child learns something new and is intrigued by new information, not to mention learn how to read and read fluently, has been one of the most rewarding experiences of my life. Being the one to teach her all these new things is pretty awesome. My little gymnast will also be taking a break from gymnastics this Summer. She has expressed interest in soccer, and I believe they offer in locally in the Fall, so we may go that route for a little while.
Speaking of soccer, we have ourselves a little soccer superstar in the house by the name of Cohen. He started playing in March for the Spring season, and I'll admit, it didn't look promising at first. At his first couple of practices, he didn't want to do much of anything besides stand on the field or stand with me. His first game was awful; he cried pretty much the entire time, so getting on the field even just to run around with his other teammates was out of the question. (Two other kids were crying that day, so that made me feel a little better about the situation). I mean, after all, these are three and four-year-old kids we are talking about, most of which have never played any kind of organized sport.
A few days after his first game was his next practice, during which Matt was able to get on the field with Cohen for encouragement. This practice went extremely well, so we were hopeful that he would at least get on the field and not cry at his next game. We explained that during the game, Daddy wouldn't be allowed on the field, and Cohen understood. So at the second game a few days later, not only did Cohen cooperate and play, he scored FOUR goals! The first of the season for his team! We were BEYOND proud and thrilled. And it gave him just the confidence he needed because ever since, he has been Mr. Soccer Extraordinaire! At yesterday's game, even though he was tired and has been fighting a pretty nasty cold, he played almost the whole time and scored the first goal.
Mainly, I am just glad to have Cohen involved in something that is a good form of exercise (and good for his lungs) and gives him a chance to be social with other kids and learn cooperation and teamwork. Scoring goals is a great bonus, of course, and I'd be lying if I said I wasn't super proud of him.
And last, I certainly would not go without talking about my sweet Ky-Ky, who turned ten months old on April 9. I can not believe his first birthday is right around the corner. He has grown way too fast. For the last few weeks, he has been standing up from the floor all on his own and standing for long periods of time and also taking steps. And over the last few days alone, he has been trying to walk a lot more. I don't think it will be very long before he is officially walking; I am guessing it will be by the end of the month, if that long. He just looks so cute and little standing there because he is on the smaller side and just looks too little to be walking! But there's definitely no slowing that boy down! (*And in the midst of typing this blog, Kyden walked halfway across the room.)
Now that I am (temporarily) done talking about my kiddos, I wanted to talk about my new adventure on which I currently embarked. I became a Thirty-One consultant. Not familiar with Thirty-One? You can go here to learn more about it. It is a direct sales company (like Avon, Mary Kay, Pampered Chef, etc...you get the idea), and it is Christian-based, which was a big selling factor for me. (The name of the company comes from Proverbs 31.) I have never been the biggest fan of direct sales; I like to attend the parties, but a lot of times, I feel pressured to buy products I know I won't use. Then I fell in love with Thirty-One's stuff because it's all about storage and organization, which is right up my alley, but their stuff is also super cute and functional. Once I realized I pretty much wanted to buy everything in the catalog, I thought to myself, "As excited as I am about this stuff, I could probably sell it." I didn't become a consultant to make money, however. Sure, that part is a nice bonus, but my reason for becoming a consultant is to have a hobby for myself and an outlet that will give me a break from the everyday craziness. I get to hang out with other women and have adult conversation and just be me for a little while. So while my excitement and literal joy over this endeavor may seem silly or pointless and even annoying to others, the fact that I have a new found confidence and purpose makes it worth it to me.
That said, I have to add a request: If any of my readers (all, what is it, 11 of you? lol) would like to host a party, please let me know, and I would really, genuinely enjoy doing a party for you. I started out just hosting because it earned me free and discounted products, so it's an easy way to get some of their awesome stuff!
Monday, March 12, 2012
There she goes, talking about her kids again...
A few unrelated updates about my kiddos...
Since we have to essentially "make" Cohen gain two pounds by the end of next month, I have been weighing him at the beginning of each week to keep tabs on it. From last Sunday to today, he has put on half of a pound. If he keeps that up, we should get to the two pounds (and maybe more) with no problem. We've been pumping this kid full of Pediasure to supplement his already decent appetite for food.
Speaking of good appetites, Kyden is pretty much over baby food completely. He still eats a little here and there, but he is preferring table food (who wouldn't, right?). This has made meals for him a little more challenging since he is limited to the kinds of food he can eat at this point. He's been eating a lot of steamed peas and carrots lately along with bananas, all of which he loves. Today, I gave him tiny bits of chicken at lunch (he ate every bite), steamed peas and carrots (inhaled), and steamed apples with cinnamon (inhaled even faster). Tonight, I am going to let him try some of the creamy potato soup (think very creamy mashed potatoes, but it also has pureed squash and cauliflower in it). Along with the nursing, it would seem he is getting adequate nutrition, but his nine-month check-up on Friday showed him to be on the smaller side for his weight (about 25th percentile) but otherwise healthy. The doctor is not concerned, citing that it is probably genetics (which I can't argue with, since Matt was a very small baby and child, and all my babies have been small so far). I'm sure if Kyden was formula-fed and drank juice instead of water in his sippy cup, he probably would be a little bigger given all those extra calories. Anyway, I'm sure he will catch up as he eats more table foods and once he switches from breast milk to whole milk after his first birthday, but the irony is that I thought he would be the only one of my three children with whom I wouldn't have to worry about calories and growth, and here I am somewhat worrying about it, even though the doctor assured me I shouldn't.
The doctor also diagnosed Kyden with eczema, which confirmed my suspicions about the skin issues he has been having. Fortunately, I have been doing almost everything the doctor suggested to keep the symptoms to a minimum (special lotion, hypoallergenic products, and applying Aquaphor on when it flares up), but she also said to keep his baths spread out to about every three days. I have been bathing him about every other day, mostly just out of routine, but it's an easy adjustment to make.
All this talk of food is making me hungry, so onto another topic. Cohen has his first soccer practice this evening, and since soccer is pretty much all he has talked about the last month, he is completely stoked that he finally gets to go tonight. I'm looking forward to seeing how he does as far as learning how to be part of a team, following directions, taking turns, and so on. It will also be good for him to have the social interaction with other kids his age and not just with his sister and baby brother. Mostly, I just want him to have fun and be a kid.
Since I have talked about my boys, I must talk about my daughter so she won't feel left out, right? She is doing very well with her school work and is reading everything. (Gone are the days when Matt and I could spell stuff to each other if we didn't want the kids to know what we were talking about.) I must say, I think she's a born reader. Not only is she good at it, but she enjoys it, too. Phonics, schmonics. She pretty much blows it out of the water. I'm very proud of my Emmylou. She is sort of a fidget when it comes to sitting still, but she does remarkably well with her lessons, so I know she's still paying attention.
Speaking of school, time to end this blog and get some lessons going.
Since we have to essentially "make" Cohen gain two pounds by the end of next month, I have been weighing him at the beginning of each week to keep tabs on it. From last Sunday to today, he has put on half of a pound. If he keeps that up, we should get to the two pounds (and maybe more) with no problem. We've been pumping this kid full of Pediasure to supplement his already decent appetite for food.
Speaking of good appetites, Kyden is pretty much over baby food completely. He still eats a little here and there, but he is preferring table food (who wouldn't, right?). This has made meals for him a little more challenging since he is limited to the kinds of food he can eat at this point. He's been eating a lot of steamed peas and carrots lately along with bananas, all of which he loves. Today, I gave him tiny bits of chicken at lunch (he ate every bite), steamed peas and carrots (inhaled), and steamed apples with cinnamon (inhaled even faster). Tonight, I am going to let him try some of the creamy potato soup (think very creamy mashed potatoes, but it also has pureed squash and cauliflower in it). Along with the nursing, it would seem he is getting adequate nutrition, but his nine-month check-up on Friday showed him to be on the smaller side for his weight (about 25th percentile) but otherwise healthy. The doctor is not concerned, citing that it is probably genetics (which I can't argue with, since Matt was a very small baby and child, and all my babies have been small so far). I'm sure if Kyden was formula-fed and drank juice instead of water in his sippy cup, he probably would be a little bigger given all those extra calories. Anyway, I'm sure he will catch up as he eats more table foods and once he switches from breast milk to whole milk after his first birthday, but the irony is that I thought he would be the only one of my three children with whom I wouldn't have to worry about calories and growth, and here I am somewhat worrying about it, even though the doctor assured me I shouldn't.
The doctor also diagnosed Kyden with eczema, which confirmed my suspicions about the skin issues he has been having. Fortunately, I have been doing almost everything the doctor suggested to keep the symptoms to a minimum (special lotion, hypoallergenic products, and applying Aquaphor on when it flares up), but she also said to keep his baths spread out to about every three days. I have been bathing him about every other day, mostly just out of routine, but it's an easy adjustment to make.
All this talk of food is making me hungry, so onto another topic. Cohen has his first soccer practice this evening, and since soccer is pretty much all he has talked about the last month, he is completely stoked that he finally gets to go tonight. I'm looking forward to seeing how he does as far as learning how to be part of a team, following directions, taking turns, and so on. It will also be good for him to have the social interaction with other kids his age and not just with his sister and baby brother. Mostly, I just want him to have fun and be a kid.
Since I have talked about my boys, I must talk about my daughter so she won't feel left out, right? She is doing very well with her school work and is reading everything. (Gone are the days when Matt and I could spell stuff to each other if we didn't want the kids to know what we were talking about.) I must say, I think she's a born reader. Not only is she good at it, but she enjoys it, too. Phonics, schmonics. She pretty much blows it out of the water. I'm very proud of my Emmylou. She is sort of a fidget when it comes to sitting still, but she does remarkably well with her lessons, so I know she's still paying attention.
Speaking of school, time to end this blog and get some lessons going.
Sunday, March 4, 2012
When CF Makes Me Angry...Really, Really Angry...
Before I get to the major matter, here are some pictures from Thursday's CF Clinic visit:
Emberlynn doing PFTs (which measures lung function)
Cohen in his mask (to not spread funk or have funk spread to him)
Emberlynn in the funk-protecting mask
I believe the most defeating thing about CF, and about many diseases and illnesses, for that matter, is that you can do all you possibly can so that it does as little harm as possible, but it's still not enough.
Over the last year or so, we have struggled with Cohen gaining enough weight. And it's not so much that he hasn't gained weight--he has--but along with that, he has grown taller, and his weight isn't catching up to his height, i.e., his BMI keeps dropping too low on the chart. I'll be the first to admit he's a skinny kid, but he by no means looks undernourished. He's an active four-year-old, which is normal and healthy, but with that comes the natural burning of calories, calories he so desperately needs. (On a side note, in my dream world, it would be awesome for me to consume those calories and transfer them to my children considering they need them and I, obviously, do not...but that's another issue all together...). And the thing is, the kid eats. He eats so much that it probably costs more to feed him than Matt or myself. So the issue isn't that he isn't eating enough. But what he is eating isn't necessarily the highest in calories, and there is only so much I can do to make things more fattening. For instance, he loves bananas, which would be thrilling if he was an average kid with average nutrional needs. For him, though, it would be great if he'd eat some peanut butter on that banana, or cream cheese-based fruit dip, or something that would add some good fat to it. But he just wants the banana. He won't touch peanut butter in any shape or form. He's not a fan of ice cream (yeah, I know, weird child), so milkshakes are out of the question. People think it would be easy to get calories in the kids because what kid wouldn't want to eat ice cream or cake or all these great high-calorie foods? My kids.
Anyway, I could go on all day about the struggles with food around here. We know how it ended with Emberlynn (getting a g-tube when she was 18 months old). And now it seems we are headed down the same route with Cohen. I'll spare you all the fine details from my conversation with the head pulmonary doctor, including how I broke down in tears in front of her, but in a nutshell, we have two months to get Cohen to gain two pounds (assuming he doesn't grow any more in height), or we will need to make the decision about the g-tube. Now the doctors can't force us to do anything, of course, but they are highly encouraging it, so much so that I had two doctors in the room with me discussing it. Given the fact that I've never had two doctors come in the room to discuss anything (not counting students--Vandy is a teaching hospital, after all), I know they are getting serious about it. Dr. B, who I highly respect and talks to me like a person, not an ignorant parent, is worried that his slow weight gain will start to affect his lungs (weight gain is directly affected to lung function) and that it would be better to go ahead and do it rather than keep prolonging it and do any damage.
I understand this, of course, and would never want to hurt my child deliberately. The thing is that it's not just a matter of my son getting a g-tube to help with extra calories. It's that he has to have surgery; be in a hospital for days; adjust to tube feedings, which he may or may not tolerate well (think vomiting, diarrhea and/or constipation, etc.); be attached to a pole every night; relearn how to sleep (it's hard to sleep on your stomach when attached) and not roll around so that the tubing doesn't wrap around him or around his neck, which is something that happened a lot with Emberlynn in the beginning; most likely revert back to wearing pull-ups at night because of all the fluid being taken that will inevitably have to come out. More importantly and most concerning is that he will have to adjust to having something sticking out of his stomach, which will probably be very upsetting to him, at least initially. He also will most likely not eat much during the day because he is essentially eating at night. And even though the tube is supposed to give me and Matt peace of mind because we know we can be more in control of the calories he takes in, it is an added stress. It's another worry. Another thing I'll have to fight insurance companies about. Another "chore" to add to the crap my kids have to do everyday just to survive. Another thing to make my child's life more about CF and less about being a kid.
As much as I don't want CF to define my kids, it's hard when it's so consuming. Living with CF will never be easy, not as long as a cure is not discovered, and it only gets harder as time goes on. And as Emberlynn and Cohen get older, it will be harder for them emotionally, and they will start to ask those questions that will break my heart even more, like why they have CF and why they have to do therapies and treaments and others don't. Staying positive is hard when there's so much negativity around. And it's so easy for others to tell me to think positively when they're not the ones in these shoes. Trust me, I pray, mostly for peace, but also for my kids to be able to live a long life, with or without CF. I want to tell them that, no, they won't die from this, and not be telling a lie. I know that no one is guaranteed a tomorrow, but it's hard not to think about mortality when it constantly is in your face. As a Christian, I know it's the devil speaking, and I must tell him to get behind me, that Jesus is for me. But even Jesus suffered, and he cried out to his Father, and this is me, crying out for my children.
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