Happy Mother's Day to me... Friday we took Callie in to NCH because she was throwing up everything. They checked her shunt through x-ray and MRI and the results showed stable. By the time we got out, she was doing better. Yesterday she did fine with slower feeds. Today is a different story. Our morning has involved puke, puke, and more puke. She had some coffee ground emesis this morning, so I switched out her formula for pedialyte. Since then we've done much better as long as she doesn't move. Usually when we get the brown yuck it's after she has worn out her esophagus. I'm trying very hard to treat this from home, no one wants another stay in the hospital! Poor kid... Needless to say, our mother's day plans changed! Lucky for us, my daddy has volunteered to be the grill master today and cook out instead of eat out. Let's hope Callista gets over whatever this bug is soon!
Of course, what better day than today to give a shout out to our mommies. Both of our moms have been incredibly supportive of us throughout our lives and especially the last year and a half. We are so lucky to have two great women as influences and cheerleaders.
Some moms have the typical path to follow while others are forced to take a rougher road. But all moms have struggles and hardships and tough decisions to make. We all fight with ourselves about whether or not we chose correctly, did the right thing, are we a good mom? Enjoy the day and each second you have with your children, special needs or not, because that is what being a mom is all about.
Callista
Showing posts with label motherhood. Show all posts
Showing posts with label motherhood. Show all posts
Sunday, May 12, 2013
Tuesday, March 26, 2013
Bubble = Popped
It's been awhile, but today I did it. I had myself a pity party (balloon free, of course). How can you love your life so much and hate it at the same time? I love Callista, she's perfect in every way for me. I know she's different than other babies, and I make it a point to stay away from places where there are going to be babies... I like staying in my "Callie Bubble" where all I see is her development, her growth, her milestones. But today all the imperfections in my little bubble were pointed out to me by life in general.
It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:
The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.
Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.
So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)
It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:
- Can she sit up? No.
- Does she eat anything by mouth yet? No.
- Does she hold toys? No.
- Does she have feeling in her legs? No, not for the most part.
- Is she mobile? No.
- Does she babble? Yes. (Score!)
The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.
Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.
So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)
Thursday, November 29, 2012
Things No One Tells You
When you are pregnant or have a new baby, there's always someone there to tell you the secrets of being a mom. You get hints on how to bathe her, feed her, change her, play with her, get her to sleep. But there are things people don't tell you, and you don't think about until they happen. Some things I didn't know:
After that super cute description, I'll end on a positive note. My baby girl is ten months old! *GASP* I am not sure how this happened. I am not sure why I am now pinning a million and one "first birthday" themed items on Pinterest. Where did the time go? We aren't reaching our milestones on time, but make progress everyday. Our new therapy goals are to have Callie sitting assisted by her first birthday and first bracing by 18 months. Our other goal is to have her eating some by mouth by her first birthday (everyone loves cake!). Wish us luck in meeting these goals and making progress!!
- Apparently, when you become a mother, you now have this intrinsic love for babies, real or fake. And when one is in trouble (yes, the fake ones, specifically Renesme) your heart immediately goes into protection mode (hello, fake baby!!!).
- Vomit/drool is nothing to be concerned about. Yeah, so what if I have a drool mark on my black shirt? I'll be wearing it to work anyway because who the hell has time to do laundry?
- Your baby's poop is completely different than other babies' poo. Now I am definitely not saying ANY poop is awesome, but for some reason, hers isn't nearly as bad as someone else's dirty diaper.
- You make up things your kid "likes". Yup, Callista likes giraffes. Because I like giraffes. So obviously she does too. I'm sure she will have a complex later in life because I've forced these upon her.
- No matter how bad of a day you have, one tiny little smile from your child can erase it. Seriously, just one.
- Babies make you do incredibly stupid things. Make squeaky noises with your teeth. Hang your tongue out the side of your mouth. Make ridiculous sounds with your nose. All of those things that everyone else would think look incredibly stupid, but you don't care because it makes her laugh. And then you laugh. And she laughs harder. And then you all look like a bunch of ninnies anyway.
- Babies speak at highly inapprorpriate times. All the time. That moment of silence in church? Not for her! Sermon takes too long? We shall yell and tell him to wrap it up! Doctors are sharing information with mommy and daddy? Oh no, it's all about her, and she let's you know.
After that super cute description, I'll end on a positive note. My baby girl is ten months old! *GASP* I am not sure how this happened. I am not sure why I am now pinning a million and one "first birthday" themed items on Pinterest. Where did the time go? We aren't reaching our milestones on time, but make progress everyday. Our new therapy goals are to have Callie sitting assisted by her first birthday and first bracing by 18 months. Our other goal is to have her eating some by mouth by her first birthday (everyone loves cake!). Wish us luck in meeting these goals and making progress!!
Sunday, November 13, 2011
Incision- don't look if you don't wanna see :)
Soooooo...... these are my staples.... they are about a half inch below my belly button and extend a good six or seven inches below that. Other than being crazy bruised, they aren't nearly as horrific as I thought they would be. When the doctor made me take off my bandage, I refused to look at them for awhile... But had to come to terms with that if I wanted to take a shower. :) Getting them out tomorrow hopefully!
Saturday, November 12, 2011
Operation Complete!
I finally have the stamina to stay up long enough to recap our last week...
Monday: We left our house on the way to the airport at about 4:30am. I felt as though it was the last day of my life... There were many tears, and even though I knew deep down I'd "live through this", it still was scary walking out of my home and into the unknown. We landed safely in Tennessee, and attended our pre-op appointment. They took some blood and reiterated the risks associated with the surgery. I never again want to hear someone telling us we have to "make a decision" as to what to do if they couldn't save the pregnancy. In the end, there wouldn't have been a decision, because she wouldn't have survived being only 23 weeks old.
Tuesday: Bright and early, we arrived for my surgery at 5:15 in the morning. I was a mess, freaking out about the entire thing. The thought never crossed my mind to back out, but I was a wreck. They immediately took us to a labor and delivery room, and started prepping for the surgery. It took them a long time to get an IV into my hand, so I was glad when that was done. The digging around only added to my stress of the day. Again, they brought up the chance of viability... At this time, I really couldn't contain myself anymore and had a full blown panic attack, complete with trouble breathing. They offered me the amazing drug (whatever it was!) to calm me down and from then on out it's all hazy to me. I remember them having me lean over for the epidural, and I remember them putting a mask on my face and telling me to breath deeply. I breathed deeply once... And then I woke up in my room with everyone telling me how great it went. I asked Casey several times if I was all done, obviously nothing was sticking with me. The baby did great, her heart didn't change the entire surgery, neither did mine. They told Casey and my family the lesion was a bit wider than expected, so they laced it with dissolving mesh that would allow her nerves to grow normally now. I still had a lot of drugs in my system and a working epidural, so this day is pretty much a blank for me.
Wednesday: I was feeling more awake this day, which means I was feeling awful. I ended up taking a lot of IV drugs to ease some of the pain. They had me sit up in bed some, but that was the extend of my day. Sleep, take drugs, sleep, talk, take drugs, sleep. That's about it, yeah. The magnesium sulfate they were giving me made me feel like I was dying. I was so hot, and so thirsty (I wasn't allowed to drink ANYTHING still, meaning my mouth was like a piece of flaming hot pavement, to me anyway). I had a cold wash cloth on my head at all times.
Thursday: What can I say... a MUCH better day. They removed my epidural, and stopped the magnesium sulfate. I had a splitting headache the entire day, but they let me have water and that was by far the best taste of my life. I still slept the majority of the time, but they let me listen to Callista's heart and it was so strong and regular, it really put me at ease. The catheter came out as well, and that's an experience I'll keep to myself. Trust me, you don't wanna know!
Friday: The IV came all the way out and I was switched to pill form of all my meds. I was switched to a regular diet, although my tummy was still incredibly tender and I couldn't really enjoy it anyway. Mostly, I was still infatuated with drinking as much water as I wanted! My pain eased off a lot, and I was up walking three times. Getting out of bed is hard without those tummy muscles you take for granted. They did an ultra sound of our baby girl and she was doing wonderfully. Her fluid is still great (which sometimes is a problem with fetal surgery, they lose their fluid due to the opening of the uterus). She has a steady heart beat, and the best part is we can already see her moving her little tiny fingers and toes. What a relief.
Today!: I haven't taken my "strong" drugs since early this morning and the only pain I feel is where the staples pull on my skin. They did another ultra sound this morning and you can actually see where her spine looks normal after it was repaired. I've had some nausea throughout the day that doesn't seem to want to go away, but little by little my recovery is happening. Heading to bed in a minute, after listening to that little heartbeat that I live for now.
As of yesterday, we've made it to 24 weeks, which is considered "viable", our next short term goal is 28 weeks. Our long term goal is 37 weeks, which is all the further they'll let her go. Keep us in your thoughts and prayers, we love you all!!
Monday: We left our house on the way to the airport at about 4:30am. I felt as though it was the last day of my life... There were many tears, and even though I knew deep down I'd "live through this", it still was scary walking out of my home and into the unknown. We landed safely in Tennessee, and attended our pre-op appointment. They took some blood and reiterated the risks associated with the surgery. I never again want to hear someone telling us we have to "make a decision" as to what to do if they couldn't save the pregnancy. In the end, there wouldn't have been a decision, because she wouldn't have survived being only 23 weeks old.
Tuesday: Bright and early, we arrived for my surgery at 5:15 in the morning. I was a mess, freaking out about the entire thing. The thought never crossed my mind to back out, but I was a wreck. They immediately took us to a labor and delivery room, and started prepping for the surgery. It took them a long time to get an IV into my hand, so I was glad when that was done. The digging around only added to my stress of the day. Again, they brought up the chance of viability... At this time, I really couldn't contain myself anymore and had a full blown panic attack, complete with trouble breathing. They offered me the amazing drug (whatever it was!) to calm me down and from then on out it's all hazy to me. I remember them having me lean over for the epidural, and I remember them putting a mask on my face and telling me to breath deeply. I breathed deeply once... And then I woke up in my room with everyone telling me how great it went. I asked Casey several times if I was all done, obviously nothing was sticking with me. The baby did great, her heart didn't change the entire surgery, neither did mine. They told Casey and my family the lesion was a bit wider than expected, so they laced it with dissolving mesh that would allow her nerves to grow normally now. I still had a lot of drugs in my system and a working epidural, so this day is pretty much a blank for me.
Wednesday: I was feeling more awake this day, which means I was feeling awful. I ended up taking a lot of IV drugs to ease some of the pain. They had me sit up in bed some, but that was the extend of my day. Sleep, take drugs, sleep, talk, take drugs, sleep. That's about it, yeah. The magnesium sulfate they were giving me made me feel like I was dying. I was so hot, and so thirsty (I wasn't allowed to drink ANYTHING still, meaning my mouth was like a piece of flaming hot pavement, to me anyway). I had a cold wash cloth on my head at all times.
Thursday: What can I say... a MUCH better day. They removed my epidural, and stopped the magnesium sulfate. I had a splitting headache the entire day, but they let me have water and that was by far the best taste of my life. I still slept the majority of the time, but they let me listen to Callista's heart and it was so strong and regular, it really put me at ease. The catheter came out as well, and that's an experience I'll keep to myself. Trust me, you don't wanna know!
Friday: The IV came all the way out and I was switched to pill form of all my meds. I was switched to a regular diet, although my tummy was still incredibly tender and I couldn't really enjoy it anyway. Mostly, I was still infatuated with drinking as much water as I wanted! My pain eased off a lot, and I was up walking three times. Getting out of bed is hard without those tummy muscles you take for granted. They did an ultra sound of our baby girl and she was doing wonderfully. Her fluid is still great (which sometimes is a problem with fetal surgery, they lose their fluid due to the opening of the uterus). She has a steady heart beat, and the best part is we can already see her moving her little tiny fingers and toes. What a relief.
Today!: I haven't taken my "strong" drugs since early this morning and the only pain I feel is where the staples pull on my skin. They did another ultra sound this morning and you can actually see where her spine looks normal after it was repaired. I've had some nausea throughout the day that doesn't seem to want to go away, but little by little my recovery is happening. Heading to bed in a minute, after listening to that little heartbeat that I live for now.
As of yesterday, we've made it to 24 weeks, which is considered "viable", our next short term goal is 28 weeks. Our long term goal is 37 weeks, which is all the further they'll let her go. Keep us in your thoughts and prayers, we love you all!!
Wednesday, October 5, 2011
Our little girl
Today was an extremely hard day for my family. We found out that our little one has Spina Bifida in the lowest part of her back. This is our first child, and all sorts of things are running through my mind right now... Where do we go from here, what's going to happen to her, what problems will we face in the future, will she be healthy? But mainly: what did we do to deserve this? To us, it seems we did everything right. We got married, then we got a house, then we decided to start a family. We consulted with the doctor, I took a million vitamins to get my body prepped, and we had all the serious discussions about parenting. All the right way, the way it's supposed to happen. So you'd think we'd be the perfect parents of the perfect baby. We'll still have a wonderful baby, but there's such a long hard road ahead of us. At this point, I've cried for as long and hard as possible, and now I'm just beginning to feel bitter about all those moms who didn't even want or plan for their babies. I know it's wrong, and I don't intend to hold a grudge, but my grief is just progressing through the normal stages. Why, when we tried so hard to do things the right way, do we get something this awful? I was enjoying my pregnancy, but now it's a dark spot in my life and I don't know if I'll ever overcome that. This news literally sucked the light from what's supposed to be a joyous occasion for a husband and wife.
I'm going to try really hard after today to look more positively on the whole situation. There's no doubt in my mind that we'll love this baby girl more than anything in the world, but to help myself (and maybe eventually others who are in this same spot) I've decided to start a blog. Trust me, blogging has never been an interest of mine, but now, it's such a great outlet. It will also let me get out all my feelings, as well as share with anyone who cares to follow all at once, sparing me the repetition of a very heartbreaking journey.
So for my future daughter, Callista, here we are.
I'm going to try really hard after today to look more positively on the whole situation. There's no doubt in my mind that we'll love this baby girl more than anything in the world, but to help myself (and maybe eventually others who are in this same spot) I've decided to start a blog. Trust me, blogging has never been an interest of mine, but now, it's such a great outlet. It will also let me get out all my feelings, as well as share with anyone who cares to follow all at once, sparing me the repetition of a very heartbreaking journey.
So for my future daughter, Callista, here we are.
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