Post originally started back in July! (I know...slacker (when it comes to writing, not mommying ;)!)
So Coop is doing wonderfully! Growing like crazy, and getting cuter by the minute somehow. He had a minor outpatient surgery on his boy parts a few weeks ago, but has healed and is totally back to himself now. Today we had a First Steps meeting. First Steps is Kentucky's early intervention program. They provide services such as Occupational, Physical, and Speech Therapy for children aged birth through 3 years who qualify (Ds is an automatic qualifier). Cooper has been receiving Occupational Therapy twice per month since he was around 3 months old, and has had a couple of consultations with a Speech Therapist to work on his eating. It sounds very involved, but really it isn't. The therapists come to our home and play with Cooper and show us things we can do to work with him while we play.
The meeting today was somewhat of a 6 month evaluation to see where he was with his progress and to set some new goals for the next 6 months. The goals we set last time were for him to be holding his head up, to be tracking objects with his eyes, and turning toward familiar sounds. The good news? He met all of the goals we set last time. So, we set new goals. Within the next 6 months we want him to be sitting independently, crawling, work toward feeding himself (being able to grab puffs, etc. and put them in his mouth), and hold his own bottle. I have no doubt that in 6 more months he will have met all of these goals too. The not as good news? My almost 8 month old (in 5 short days!) has the motor skill level of a 2-3 months old. I'm not gonna lie...it stings a bit. It's kinda like you made something, and you worked super hard on it. In fact, you're certain it is the best thing you have ever made! Then an expert comes and looks at it and they say, "Well, it's decent...improved from when I last saw it, but it still needs a lot of work." Ouch. Now, don't get me wrong, I understand that the truth is the truth and that it is the job of those involved to honestly evaluate Coop. I'm not angry and I know our therapist loves Cooper and that her evaluation is no reflection on how she feels about him. But, he is the best thing I've ever made. I am certain of that...he's my masterpiece, my perfection, and it is sometimes hard to take to know that in the world's eyes he has a defect, that something is wrong (in the view of society, certainly not this momma). It's a funny thing this 'Special Needs Mom' title. I feel so blessed to be Cooper's mother and I accept him just as he is, with Down syndrome and the delays/challenges it entails, and also with the fantastic and typical things about him. I wouldn't change a chromosome of his DNA or a hair on his adorable little head. I won't lie though...sometimes it smarts a bit when I see a child with typical chromosomes walking and talking and doing so many things that children his age do. And it's confusing...I'm not disappointed in Coop...I'm sad because I want the world for him and it hurts to admit that there are things he may not have or do. But, then I look at that beautiful little face with his bright sunshiny smile and I'm grateful that already he has taught me to slow down and appreciate just being here each day. He'll do things in his own time, not mine or B's, and certainly not the world's. And that's okay...
Monday, October 1, 2012
Wednesday, June 27, 2012
Don't you cry...[for me, that is]
You talk to me softly, there's something in your eyes...
Don't hang your head in sorrow, and please don't cry.
I've sat and wondered what I should write...when I was thinking about the story of Cooper's diagnosis and birth, it was so easy. It was all pent up inside and I wanted people to know, and so it just spilled forth. Now that its all out, I'm sort of at a loss. My life is blissfully normal. Aside from Occupational Therapy visits every other week, nothing is terribly exciting. Don't get me wrong; I'm glad! Anyway, it has left me with a wicked case of writer's block. But, I'm going to do what I did on this blog in the beginning and write from my heart and let my thoughts flow.
I can't help but think of who I was last year. That girl...she seems like she was from a different lifetime. She was so sad, so despondent...lost and hurting. I think of her often; I feel sorry for her, but at the same time I find her almost comical. "Oh the sorrow! I'm going to have an adorable kid who is insanely well behaved and has slept through the night almost since birth! Woe! Sadness!" Okay, I kid, but I wish I could go back and hug that girl, tell her it would be okay. I'm not sure she would believe me in her state of mind, and besides, she doesn't know what I know. I wish I could explain it better, but it is borderline ridiculous, almost laughable in fact now, to think that this beautiful little creature, the one who has my whole heart, who I can't imagine trying to live life without, was associated with such sorrow and hurt. My precious source of joy, a source of pain?
This face + sadness? Not so much!
Okay, be serious ;)
I don't mean to make light of that difficult time, because it was so hard and it was real. It's easy when you're not there to imagine how you'd handle it, and let me tell ya...your imagination always paints a prettier picture than reality produces. You'd be sad too...you'd mourn for that baby you thought was on its way and if you say you wouldn't, then you're aspiring to be Cleopatra sister, 'cause you're the queen of denial! Of course I know it wasn't really Cooper who brought all that pain. It was a diagnosis, it was fear, it was the unknown. It was finding out that most of what you had thought and pictured was wrong. It was thinking that what society deemed normal and acceptable wasn't part of your equation. I still see it in people's eyes you know. Pity, I mean. They look at Cooper and remark about how cute he is (and dang, is that kid ever cute!), but when they look at me, they feel sorry for me. That poor girl, her baby is sick (except, not really!) and has that syndrome. They feel sorry for me, but at the same time they are relieved it's me and not them. And you know what? That's okay. The difference in me now and that girl from last year is that I've crossed over. I'm on the other side of the diagnosis. I feel like I have a secret that they don't know about. I get to be Cooper's mother. I get to enjoy this magical little being everyday of my life. I get to feel his little snuggly body melt against me when I pick him up out of his bed. I get to inhale his sweet baby scent, and I get to watch his little brow furrow in concentration while he notices or tries something new. I'm not sorrowful, I'm not regretful, I'm not morose or despondent, or any other adjective you can think of that means sad. I'm not bogged down by endless therapy sessions or caring for my ailing child. In fact, he is healthy (Praise God!) and pretty happy to boot. You might be wondering by now: the point to this rambling? Don't feel sorry for me! I am so happy, and no it isn't because I'm in denial. I have this beautiful boy and like I would've told the me from a year ago, "It really is okay..."
Okay, had to get that out. Next post, I am going to talk more about those [not so] good ol' NICU days ;)
Don't hang your head in sorrow, and please don't cry.
I've sat and wondered what I should write...when I was thinking about the story of Cooper's diagnosis and birth, it was so easy. It was all pent up inside and I wanted people to know, and so it just spilled forth. Now that its all out, I'm sort of at a loss. My life is blissfully normal. Aside from Occupational Therapy visits every other week, nothing is terribly exciting. Don't get me wrong; I'm glad! Anyway, it has left me with a wicked case of writer's block. But, I'm going to do what I did on this blog in the beginning and write from my heart and let my thoughts flow.
I can't help but think of who I was last year. That girl...she seems like she was from a different lifetime. She was so sad, so despondent...lost and hurting. I think of her often; I feel sorry for her, but at the same time I find her almost comical. "Oh the sorrow! I'm going to have an adorable kid who is insanely well behaved and has slept through the night almost since birth! Woe! Sadness!" Okay, I kid, but I wish I could go back and hug that girl, tell her it would be okay. I'm not sure she would believe me in her state of mind, and besides, she doesn't know what I know. I wish I could explain it better, but it is borderline ridiculous, almost laughable in fact now, to think that this beautiful little creature, the one who has my whole heart, who I can't imagine trying to live life without, was associated with such sorrow and hurt. My precious source of joy, a source of pain?
This face + sadness? Not so much!
I don't mean to make light of that difficult time, because it was so hard and it was real. It's easy when you're not there to imagine how you'd handle it, and let me tell ya...your imagination always paints a prettier picture than reality produces. You'd be sad too...you'd mourn for that baby you thought was on its way and if you say you wouldn't, then you're aspiring to be Cleopatra sister, 'cause you're the queen of denial! Of course I know it wasn't really Cooper who brought all that pain. It was a diagnosis, it was fear, it was the unknown. It was finding out that most of what you had thought and pictured was wrong. It was thinking that what society deemed normal and acceptable wasn't part of your equation. I still see it in people's eyes you know. Pity, I mean. They look at Cooper and remark about how cute he is (and dang, is that kid ever cute!), but when they look at me, they feel sorry for me. That poor girl, her baby is sick (except, not really!) and has that syndrome. They feel sorry for me, but at the same time they are relieved it's me and not them. And you know what? That's okay. The difference in me now and that girl from last year is that I've crossed over. I'm on the other side of the diagnosis. I feel like I have a secret that they don't know about. I get to be Cooper's mother. I get to enjoy this magical little being everyday of my life. I get to feel his little snuggly body melt against me when I pick him up out of his bed. I get to inhale his sweet baby scent, and I get to watch his little brow furrow in concentration while he notices or tries something new. I'm not sorrowful, I'm not regretful, I'm not morose or despondent, or any other adjective you can think of that means sad. I'm not bogged down by endless therapy sessions or caring for my ailing child. In fact, he is healthy (Praise God!) and pretty happy to boot. You might be wondering by now: the point to this rambling? Don't feel sorry for me! I am so happy, and no it isn't because I'm in denial. I have this beautiful boy and like I would've told the me from a year ago, "It really is okay..."
Okay, had to get that out. Next post, I am going to talk more about those [not so] good ol' NICU days ;)
Tuesday, May 15, 2012
Yo' Momma...
Blah...I'm doing terribly with this whole blogging thing, aren't I? I'm sorry. I have these marvelous intentions, but between work, baby, and trying to keep some semblance of order in our house, those intentions tend to fall by the wayside. I'm sure you understand ;) Anyway...
Mother's Day...some might call it a hallmark holiday. Most know better than to question a day celebrating those who have brought forth new life though, and so they obligingly buy a $3 card and some lilies. I wondered what my first Mother's Day would be like. Would B make me dinner and send me a gorgeous flower arrangement? Would I graciously bask in the glow of that glorious title, Mother? Well, turns out I'm not much of a basker apparently. A continuous torrential downpour plagued the day and B ended up having to work. I woke up grumpy and with a sinus headache. I picked up my sleeping boy that morning, cradled his warm body, kissed his soft forehead, and told myself to just be grateful that I was spending the day with him. The brat inside me? She wanted to pout and wallow in the pity of B being at work and no flowers, dinner, or gloriousness in sight. I tried to shake my sour mood, but it wasn't going anywhere. I made Coop a bottle, turned on some HGTV, and settled in on the couch to feed little baby, as I often call him. Not long after that, my grandmother called and in that "grandmother" way of hers, talked me right into loading up Cooper and coming to church and then having dinner with the family after. However, by the time I finished the feeding, got myself ready, Cooper ready, the diaper bag ready, and put the car seat base back in my car (of course I had taken it out earlier in the week), there was no hope of making it to church on time. Boy, did I ever miss the extra help B provides! So, I decided that I'd just meet everyone for dinner after they got out of church. Just so you can picture it in your mind, I was drenched from the everlasting monsoon and my curly hair was somehow both wilted and fuzzy at the same time. I drove to Cracker Barrel as it was nearly time for church to be over and waited, only to get a message from my cousin that the dinner had been changed to 3:30pm. So, I took my wilted self back home, feeling even sorrier for myself. As little baby and I made our way back into the house I looked beside the back door and saw these sitting there:
I imagine that I'll never get tired of that beautiful, precious smile. How could anyone be sad with such pure joy in front of them?! Suddenly, I didn't feel sorry for myself anymore. Later, after a dinner with my loud and boisterous family and then a cozy evening at home with my boys, you know what I did? I found myself basking in the joy that radiated from my family and home. I'm one blessed momma, and years from now when I reflect on my first Mother's Day, I know I will do so happily and without regret. The fact that I have these two guys in my life...wow, now that's something to celebrate<3
Mother's Day...some might call it a hallmark holiday. Most know better than to question a day celebrating those who have brought forth new life though, and so they obligingly buy a $3 card and some lilies. I wondered what my first Mother's Day would be like. Would B make me dinner and send me a gorgeous flower arrangement? Would I graciously bask in the glow of that glorious title, Mother? Well, turns out I'm not much of a basker apparently. A continuous torrential downpour plagued the day and B ended up having to work. I woke up grumpy and with a sinus headache. I picked up my sleeping boy that morning, cradled his warm body, kissed his soft forehead, and told myself to just be grateful that I was spending the day with him. The brat inside me? She wanted to pout and wallow in the pity of B being at work and no flowers, dinner, or gloriousness in sight. I tried to shake my sour mood, but it wasn't going anywhere. I made Coop a bottle, turned on some HGTV, and settled in on the couch to feed little baby, as I often call him. Not long after that, my grandmother called and in that "grandmother" way of hers, talked me right into loading up Cooper and coming to church and then having dinner with the family after. However, by the time I finished the feeding, got myself ready, Cooper ready, the diaper bag ready, and put the car seat base back in my car (of course I had taken it out earlier in the week), there was no hope of making it to church on time. Boy, did I ever miss the extra help B provides! So, I decided that I'd just meet everyone for dinner after they got out of church. Just so you can picture it in your mind, I was drenched from the everlasting monsoon and my curly hair was somehow both wilted and fuzzy at the same time. I drove to Cracker Barrel as it was nearly time for church to be over and waited, only to get a message from my cousin that the dinner had been changed to 3:30pm. So, I took my wilted self back home, feeling even sorrier for myself. As little baby and I made our way back into the house I looked beside the back door and saw these sitting there:
Oh! That darling man! He came through...how foolish of me to think he would let the occasion pass without something to mark it. I found myself smiling in spite of it all. With a little more spring in my step I went on in the house and got ready to feed baby again (man, that kid eats often!). As I was talking to him and he was cooing and gooing at me, he told me "Happy Mother's Day!"...I mean, not in so many words, but more like this:
Thursday, April 12, 2012
Fright[ening] Night!
The weeks leading up to that last fateful doctor's appointment had been filled with happy anticipation but had certainly not been without worry. Cooper's movements, once boisterous and frequent had slowed to soft occasional flutters. My frequent ultrasounds had shown a baby whose growth had dropped off dramatically and with just 6 weeks left in my pregnancy he was barely measuring 3 pounds. On top of these things, my amniotic fluid was measuring low which resulted in me constantly toting around a 1 liter plastic container of ice water in an attempt to hydrate and hopefully replenish my fluid. All of this culminated with that last doctor's appointment on November 30th in which I was sent to the hospital for monitoring and to eventually be scheduled for a cesarian section the next day.
That last night was surreal. When family and friends had left and it was just B and I left in my hospital room, we tried to comprehend the reality of it all. That it was the last time it would be just the two of us. We watched a little TV and made idle conversation that belied our anxiety. In a few short hours, we would be parents! I wanted to take a shower, and B was exhausted from having been up since 5am when his alarm had went off for the workday so he laid down in the reclining chair by my bed and was soon dozing off. I took my shower which was made quite difficult from trying to protect the IV in my left hand. When I was done, I put a clean hospital gown on and put some mousse in my hair and dried it and then rang for the nurse to hook my monitors back up.
A few hours before Cooper was born
At that point, I too was exhausted and in spite of my excitement and anxiousness, I managed to dose off. It was around 2am. It seemed like mere minutes later I was awakened by a nurse moving the monitor around on my stomach. Drowsy and unconcerned I asked, "Oh, did I move and mess up the position of it (the monitor)?"
"I don't know, did you?" she asked in a short, uneasy tone.
"Oh, I'm not sure...I had just fallen asleep, I think..." I replied slowly.
As she applied some more of the cold gel and moved the monitor around on my belly her movements and facial expression became more and more fretful. Finally, she pushed the call button and in a desperate tone said, "Can someone help me get her on the monitor?!"
Within seconds, the overhead lights flipped on and the room filled with people. There must have been 10-12 of them...nurses, doctors, anesthesia, etc. The commotion had woke B up by then and he was sitting straight up in his chair by my bed. His eyes were large and confused. The seconds that passed as they moved the monitor around to no avail felt never ending. And all the while there was no comforting swoosh-swoosh of a heartbeat, of my baby's heartbeat, to be found. Just my own breathing which was growing increasingly louder and the static sound of the monitor being moved around on my abdomen. Someone grabbed an oxygen mask and I put it on with shaking hands. "Roll over on your side, roll over! Quick! Hurry!" They shouted. My own heart was beating wildly in my chest like it was instead a frightened bird trapped in there. Panic filled my body and clogged my throat and made it difficult to get my breath. Thoughts crowded my mind and I wondered if this was it...the end. If my baby was already gone and I'd never get to hear his cry or cuddle his warm body. I thought of all of the things we had made it through with this pregnancy; the diagnosis, the low fluid, decreased movement, and growth restriction, only to have it all end here. It felt like hours had passed...like time had slowed to a crawl, but finally, finally a heartbeat was detected and that reassuring rhythm once again filled the room. As quickly as all of those people had appeared they were gone, and B and I were left staring at one another in a jumbled mixture of confusion, fear, and relief. I was lying on my right side, still as a statue. The only sounds in the room were Cooper's (beautiful!) heartbeat and the 'ssshhhh' sound of the oxygen mask which I still wore and which was still turned up high. I stayed like that on my side for about 45 minutes until my bladder betrayed me and I called my nurse to help me to the bathroom. I went, and then laid back down minus the oxygen mask. I couldn't fall asleep again. I laid there and listened intently to that heart beat. About an hour or so later the swooshing slowed again. I looked at the screen and saw that Cooper's heart rate had fallen from a steady 118-120 beats per minute to 97, then to 90. The nurses were once again in my room and I was once again turning to my side. Thankfully, his heart quickly returned to normal rate. A doctor came in soon after. She said that even though my c-section was scheduled for 7am, she didn't feel comfortable waiting that long as Cooper's heart rate decelerations were indicating that he needed to be gotten out. It was around 3:45am. She said she had already called anesthesia and as soon as they could get there I would be taken back to be prepped for my c-section. This was more than alright with me as I wasn't sure I could handle anymore frightening episodes like what had occurred.
B preparing for the surgery
Soon after, I was taken to the operating room. An epidural and a spinal were placed and then I was lying on my back looking up at the bright overhead lights. A blue drape was put in place that blocked the view of most of my body and B was brought back in. A nasal cannula was placed in my nose for supplemental oxygen and then the procedure began. After some intense tugging and pressure (but no pain, thankfully!), he was out. At 4:51 am that morning Cooper Benjamin entered the world with a loud angry wail. It was then (and still is) the most beautiful sound I had ever heard in all of my time on this earth. Oh, how he cried! And upon hearing him, a multitude of emotions rained down on me. My heart swelled and relief washed over me and without hardly realizing it I was crying too. He was here, and he was okay! I couldn't stop crying. I'll never forget the sound of that first cry as long as I live. After several minutes, Cooper was cleaned up and B was allowed to hold him and bring him over for me to see. He carefully held him up near my face and with an incredulous tone said, "He's so little!" And then I saw him...his angry little face. His eyes were swollen from the delivery and were tightly shut. His mouth was drawn into a bit of a frown and he was without a doubt the most amazing thing I'd ever seen. He looked so mad!
Minutes after he was born
After I was allowed to see him, he was whisked away to the NICU (due to his prematurity and low birth weight), and I was taken to recovery. I was more tired than I had ever been in my life. I drifted in and out of consciousness as exhaustion overtook me. I slept for a little while and then was taken to my room. Brandon went to the NICU to allow our families to see Cooper. After I woke up I concentrated on trying to move my legs which were still heavy and leaden from the epidural. I had to be able to stand on my own before I was allowed to go see my baby who was on another floor of the hospital. That afternoon I had regained feeling and was able to be taken in a wheelchair to see him.
A few hours after he was born
The first time I ever held my precious boy
That day, I wasn't thinking about a Down syndrome diagnosis. I was thinking about how relieved and blessed I was. I was thinking about how after all of the time I had spent dreaming of this day, dreaming of this little person, he was finally here and he was okay. Four months later, I would be lying if I said I never think of Ds...of course I do. But, when I do, it is in a very matter of fact way because it is a little part of our lives. The fear and pain of our initial diagnosis are just a memory. Every day as he develops his personality, Cooper amazes me more, and every day I continue to be blown away by the fact that just when I think I couldn't possibly love him any more, I do. In spite of the mystery that is the future, I don't worry about the unknown very often. My hopes are simple...I hope that Cooper will always know that he is loved tremendously, that he brings immeasurable joy to me and his daddy, and that no matter what life holds for us, he is my greatest achievement and my greatest dream made reality. I will spend my entire life trying to be deserving of the honor of being his mother<3
That last night was surreal. When family and friends had left and it was just B and I left in my hospital room, we tried to comprehend the reality of it all. That it was the last time it would be just the two of us. We watched a little TV and made idle conversation that belied our anxiety. In a few short hours, we would be parents! I wanted to take a shower, and B was exhausted from having been up since 5am when his alarm had went off for the workday so he laid down in the reclining chair by my bed and was soon dozing off. I took my shower which was made quite difficult from trying to protect the IV in my left hand. When I was done, I put a clean hospital gown on and put some mousse in my hair and dried it and then rang for the nurse to hook my monitors back up.
A few hours before Cooper was born
At that point, I too was exhausted and in spite of my excitement and anxiousness, I managed to dose off. It was around 2am. It seemed like mere minutes later I was awakened by a nurse moving the monitor around on my stomach. Drowsy and unconcerned I asked, "Oh, did I move and mess up the position of it (the monitor)?"
"I don't know, did you?" she asked in a short, uneasy tone.
"Oh, I'm not sure...I had just fallen asleep, I think..." I replied slowly.
As she applied some more of the cold gel and moved the monitor around on my belly her movements and facial expression became more and more fretful. Finally, she pushed the call button and in a desperate tone said, "Can someone help me get her on the monitor?!"
Within seconds, the overhead lights flipped on and the room filled with people. There must have been 10-12 of them...nurses, doctors, anesthesia, etc. The commotion had woke B up by then and he was sitting straight up in his chair by my bed. His eyes were large and confused. The seconds that passed as they moved the monitor around to no avail felt never ending. And all the while there was no comforting swoosh-swoosh of a heartbeat, of my baby's heartbeat, to be found. Just my own breathing which was growing increasingly louder and the static sound of the monitor being moved around on my abdomen. Someone grabbed an oxygen mask and I put it on with shaking hands. "Roll over on your side, roll over! Quick! Hurry!" They shouted. My own heart was beating wildly in my chest like it was instead a frightened bird trapped in there. Panic filled my body and clogged my throat and made it difficult to get my breath. Thoughts crowded my mind and I wondered if this was it...the end. If my baby was already gone and I'd never get to hear his cry or cuddle his warm body. I thought of all of the things we had made it through with this pregnancy; the diagnosis, the low fluid, decreased movement, and growth restriction, only to have it all end here. It felt like hours had passed...like time had slowed to a crawl, but finally, finally a heartbeat was detected and that reassuring rhythm once again filled the room. As quickly as all of those people had appeared they were gone, and B and I were left staring at one another in a jumbled mixture of confusion, fear, and relief. I was lying on my right side, still as a statue. The only sounds in the room were Cooper's (beautiful!) heartbeat and the 'ssshhhh' sound of the oxygen mask which I still wore and which was still turned up high. I stayed like that on my side for about 45 minutes until my bladder betrayed me and I called my nurse to help me to the bathroom. I went, and then laid back down minus the oxygen mask. I couldn't fall asleep again. I laid there and listened intently to that heart beat. About an hour or so later the swooshing slowed again. I looked at the screen and saw that Cooper's heart rate had fallen from a steady 118-120 beats per minute to 97, then to 90. The nurses were once again in my room and I was once again turning to my side. Thankfully, his heart quickly returned to normal rate. A doctor came in soon after. She said that even though my c-section was scheduled for 7am, she didn't feel comfortable waiting that long as Cooper's heart rate decelerations were indicating that he needed to be gotten out. It was around 3:45am. She said she had already called anesthesia and as soon as they could get there I would be taken back to be prepped for my c-section. This was more than alright with me as I wasn't sure I could handle anymore frightening episodes like what had occurred.
B preparing for the surgery
Soon after, I was taken to the operating room. An epidural and a spinal were placed and then I was lying on my back looking up at the bright overhead lights. A blue drape was put in place that blocked the view of most of my body and B was brought back in. A nasal cannula was placed in my nose for supplemental oxygen and then the procedure began. After some intense tugging and pressure (but no pain, thankfully!), he was out. At 4:51 am that morning Cooper Benjamin entered the world with a loud angry wail. It was then (and still is) the most beautiful sound I had ever heard in all of my time on this earth. Oh, how he cried! And upon hearing him, a multitude of emotions rained down on me. My heart swelled and relief washed over me and without hardly realizing it I was crying too. He was here, and he was okay! I couldn't stop crying. I'll never forget the sound of that first cry as long as I live. After several minutes, Cooper was cleaned up and B was allowed to hold him and bring him over for me to see. He carefully held him up near my face and with an incredulous tone said, "He's so little!" And then I saw him...his angry little face. His eyes were swollen from the delivery and were tightly shut. His mouth was drawn into a bit of a frown and he was without a doubt the most amazing thing I'd ever seen. He looked so mad!
Minutes after he was born
After I was allowed to see him, he was whisked away to the NICU (due to his prematurity and low birth weight), and I was taken to recovery. I was more tired than I had ever been in my life. I drifted in and out of consciousness as exhaustion overtook me. I slept for a little while and then was taken to my room. Brandon went to the NICU to allow our families to see Cooper. After I woke up I concentrated on trying to move my legs which were still heavy and leaden from the epidural. I had to be able to stand on my own before I was allowed to go see my baby who was on another floor of the hospital. That afternoon I had regained feeling and was able to be taken in a wheelchair to see him.
A few hours after he was born
The first time I ever held my precious boy
That day, I wasn't thinking about a Down syndrome diagnosis. I was thinking about how relieved and blessed I was. I was thinking about how after all of the time I had spent dreaming of this day, dreaming of this little person, he was finally here and he was okay. Four months later, I would be lying if I said I never think of Ds...of course I do. But, when I do, it is in a very matter of fact way because it is a little part of our lives. The fear and pain of our initial diagnosis are just a memory. Every day as he develops his personality, Cooper amazes me more, and every day I continue to be blown away by the fact that just when I think I couldn't possibly love him any more, I do. In spite of the mystery that is the future, I don't worry about the unknown very often. My hopes are simple...I hope that Cooper will always know that he is loved tremendously, that he brings immeasurable joy to me and his daddy, and that no matter what life holds for us, he is my greatest achievement and my greatest dream made reality. I will spend my entire life trying to be deserving of the honor of being his mother<3
Thursday, March 29, 2012
What really matters...
So sorry for being away for so long...seems like I have been busy lately! This pretty weather has also made it difficult to sit inside behind a computer. Anyway, I know I still have the story of Cooper's birthday to tell, and I promise I will but I have something else on my mind right now. Those of you who are friends with me on Facebook have seen me post about this multiple times and the truth is, I can't stop thinking about it.
One of the ladies who works at the hospital in my department had a little granddaughter who was born 3 days after Cooper. He was born on a Thursday and little Chloe arrived the following Sunday, also premature and also weighing a little over 3lbs if I remember correctly. She was transferred to the NICU after being born at another hospital because of her prematurity, as well as something that was going on with her skin and a stomach blockage. After many doctors and tests it was determined that this little girl had a rare condition called Epidermolysis Bullosa. It is a genetic condition where among other things, the individual's skin is extremely fragile and even gentle friction can cause painful blisters. Because of this fragility, children with this condition are often referred to as 'butterfly children.' This past Saturday, March 24th, less than 2 weeks before her 4 month birthday Chloe passed away from complications from this illness. I saw photos from her funeral service and graveside service and the sorrow has still not let go of this momma's heart. She looked like a beautiful little porcelain doll. What has stayed with me the most though are the photos from the graveside. Her mother's hand resting on her tiny casket before it was placed in the ground...the grief in her face was tangible. Although I could never begin to know exactly how she feels, my heart ached. I sat on my couch last night and I sobbed just thinking about it all. I looked over at my precious boy sleeping in peacefully on his Boppy pillow, nearly the exact same age as little Chloe and I thought about how stupid I was. When we received Cooper's diagnosis early in my pregnancy I thought the world was crashing down around me. My world ceased to turn for a time, its rotation coming to a screeching halt. I mourned and cried and tried to make sense of it all and I felt like I didn't know the baby I was carrying anymore. They say hindsight is 20/20 and boy is that ever true. I know now that there was no cause for mourning. My baby is here and he is healthy and that is what matters. The past few weeks I have been stressing because Cooper is quickly nearing 4 months and still wasn't tracking objects with his eyes, won't hardly work to hold his head up, and try as I might I couldn't get him to smile for anything. Seeing the pictures of that mother burying her baby was like cold water being dumped over my head; like a big flashing neon sign screaming at me to forget about milestones and Ds and to just love and cherish my baby. Last night, I picked up my sweet boy and I hugged him. I nuzzled his soft downy head and listened to his sleepy rhythmic breathing, and I thanked God for him, and I came to a greater level of awareness and gratitude for him. Please friends, don't take life for granted. Hold not just your babies, but all loved ones close. We are not promised our next breath. To the Jones family who released their baby girl into the waiting arms of heaven--Thank you so much for sharing your beautiful girl with the world. God bless, and peace be with you all<3
PS---> Just when I thought it might never happen, as I was getting ready to feed Cooper yesterday morning and he was staring at my face intently and cooing, "I goo!" this is what I saw:
Not the best picture but I was scrambling for my phone!
Okay, that's all for now. I pinky promise friends, the birthday post will be the next one!
One of the ladies who works at the hospital in my department had a little granddaughter who was born 3 days after Cooper. He was born on a Thursday and little Chloe arrived the following Sunday, also premature and also weighing a little over 3lbs if I remember correctly. She was transferred to the NICU after being born at another hospital because of her prematurity, as well as something that was going on with her skin and a stomach blockage. After many doctors and tests it was determined that this little girl had a rare condition called Epidermolysis Bullosa. It is a genetic condition where among other things, the individual's skin is extremely fragile and even gentle friction can cause painful blisters. Because of this fragility, children with this condition are often referred to as 'butterfly children.' This past Saturday, March 24th, less than 2 weeks before her 4 month birthday Chloe passed away from complications from this illness. I saw photos from her funeral service and graveside service and the sorrow has still not let go of this momma's heart. She looked like a beautiful little porcelain doll. What has stayed with me the most though are the photos from the graveside. Her mother's hand resting on her tiny casket before it was placed in the ground...the grief in her face was tangible. Although I could never begin to know exactly how she feels, my heart ached. I sat on my couch last night and I sobbed just thinking about it all. I looked over at my precious boy sleeping in peacefully on his Boppy pillow, nearly the exact same age as little Chloe and I thought about how stupid I was. When we received Cooper's diagnosis early in my pregnancy I thought the world was crashing down around me. My world ceased to turn for a time, its rotation coming to a screeching halt. I mourned and cried and tried to make sense of it all and I felt like I didn't know the baby I was carrying anymore. They say hindsight is 20/20 and boy is that ever true. I know now that there was no cause for mourning. My baby is here and he is healthy and that is what matters. The past few weeks I have been stressing because Cooper is quickly nearing 4 months and still wasn't tracking objects with his eyes, won't hardly work to hold his head up, and try as I might I couldn't get him to smile for anything. Seeing the pictures of that mother burying her baby was like cold water being dumped over my head; like a big flashing neon sign screaming at me to forget about milestones and Ds and to just love and cherish my baby. Last night, I picked up my sweet boy and I hugged him. I nuzzled his soft downy head and listened to his sleepy rhythmic breathing, and I thanked God for him, and I came to a greater level of awareness and gratitude for him. Please friends, don't take life for granted. Hold not just your babies, but all loved ones close. We are not promised our next breath. To the Jones family who released their baby girl into the waiting arms of heaven--Thank you so much for sharing your beautiful girl with the world. God bless, and peace be with you all<3
PS---> Just when I thought it might never happen, as I was getting ready to feed Cooper yesterday morning and he was staring at my face intently and cooing, "I goo!" this is what I saw:
Not the best picture but I was scrambling for my phone!
And one more just because. He has recently decided he is a side sleeper:
Wednesday, March 21, 2012
3/21--A day of celebration
*We interrupt the story in progress for a special occasion. Hope you don't mind ;)*
Today 3/21/12 is World Down Syndrome Day and I can say with complete honesty I am more than proud to celebrate it. If I think back to exactly one year ago today...wow! So much has happened since then. We were gearing up for our first IVF cycle, meeting with a contractor to start a room addition, and didn't have a thought in the world about Down syndrome. This year we have a baby as a result of that cycle (!), the room is done (thank God!), and Ds has rocked our world (but not so much in a bad way). In case you hadn't figured it out, the date 3/21 is significant because Ds most commonly occurs when there are 3 of the 21st chromosome. Anyway, if you had asked me a year ago what my feelings were on the subject, it would have been a short conversation. The truth is, I hadn't thought about it...like, not at all. Never dreamed it would become apart of my daily life, never dreamed I'd be the mother of a child with special needs. Heck, at that point, I wasn't even sure if I'd ever become the mother of any child. But a year later, here he is. When I look at Cooper, I see beauty and innocence. I see soft baby cheeks, big blue eyes, and perfect little lips. When I listen to Cooper, I hear soft regular breathing, the occasional, "I goo!", and often contented sighs while he takes his bottle. When I think about Cooper, I think about how he makes me grin like an idiot with just a look, how he manages to fill my heart so full it just might burst, but mostly how he is everything I could have ever wanted and everything I never even knew I wanted. I think about how already, in a matter of months, he has begun work to make me a better person. A more patient person, a more tolerant person, and a more appreciative person. I look at the world with a new appreciation and overall, a new view. When I see people with disabilities, I no longer pity them; I want to cheer them on! When things seem to be taking just a bit too long, I find patience I didn't have before. And when things aren't going my way, I'm starting to stand back and look at the big picture a little more. Today, I celebrate my beautiful boy and all the other gorgeous kids all over the world who have made me apart of the best club I never knew I wanted to be apart of. Another momma said it best, "I never knew I wanted a child with Ds until I got one!" I hope you will all celebrate with us! Let's work together to blow the lid off of this, to banish the stigma, and crush stereotypes. I certainly can't do it alone...will you help? Will you take the knowledge you gain from 'knowing' my Cooper and pass it along to others? Let them know that there is no room for pity or intolerance. Let them know that it is not just okay...that, in fact, it is beautiful!
Cooper is counting on us!
From Cooper, B, and I --have a wonderful day everyone, and CELEBRATE!!
Today 3/21/12 is World Down Syndrome Day and I can say with complete honesty I am more than proud to celebrate it. If I think back to exactly one year ago today...wow! So much has happened since then. We were gearing up for our first IVF cycle, meeting with a contractor to start a room addition, and didn't have a thought in the world about Down syndrome. This year we have a baby as a result of that cycle (!), the room is done (thank God!), and Ds has rocked our world (but not so much in a bad way). In case you hadn't figured it out, the date 3/21 is significant because Ds most commonly occurs when there are 3 of the 21st chromosome. Anyway, if you had asked me a year ago what my feelings were on the subject, it would have been a short conversation. The truth is, I hadn't thought about it...like, not at all. Never dreamed it would become apart of my daily life, never dreamed I'd be the mother of a child with special needs. Heck, at that point, I wasn't even sure if I'd ever become the mother of any child. But a year later, here he is. When I look at Cooper, I see beauty and innocence. I see soft baby cheeks, big blue eyes, and perfect little lips. When I listen to Cooper, I hear soft regular breathing, the occasional, "I goo!", and often contented sighs while he takes his bottle. When I think about Cooper, I think about how he makes me grin like an idiot with just a look, how he manages to fill my heart so full it just might burst, but mostly how he is everything I could have ever wanted and everything I never even knew I wanted. I think about how already, in a matter of months, he has begun work to make me a better person. A more patient person, a more tolerant person, and a more appreciative person. I look at the world with a new appreciation and overall, a new view. When I see people with disabilities, I no longer pity them; I want to cheer them on! When things seem to be taking just a bit too long, I find patience I didn't have before. And when things aren't going my way, I'm starting to stand back and look at the big picture a little more. Today, I celebrate my beautiful boy and all the other gorgeous kids all over the world who have made me apart of the best club I never knew I wanted to be apart of. Another momma said it best, "I never knew I wanted a child with Ds until I got one!" I hope you will all celebrate with us! Let's work together to blow the lid off of this, to banish the stigma, and crush stereotypes. I certainly can't do it alone...will you help? Will you take the knowledge you gain from 'knowing' my Cooper and pass it along to others? Let them know that there is no room for pity or intolerance. Let them know that it is not just okay...that, in fact, it is beautiful!
Cooper is counting on us!
Monday, March 19, 2012
A routine appointment...
Our diagnosis was confirmed via final results when I was about 15 weeks pregnant. Time began to pass quickly after that point and we soon found ourselves working to prepare Cooper's room and discussing a baby shower venue. Choosing furniture, crib bedding, and paint colors happily took the place of worry about our boy's diagnosis. In between the multitude of appointments to check his heart, bowels, and growth (thankfully no significant issues were found), I tried to immerse myself in the plans and just be happy. I admit though, I was still so scared. And you know what's funny...I wasn't scared so much about the Ds. I was just scared that after this very long journey that I still wouldn't get my baby. It was almost as if my mind couldn't fathom that this was really happening. Regardless, I threw my self into the planning (I am definitely a planner) and decorating. Two of my most favorite things.
I was pretty much on a first name basis with the staff at the paint counter at Lowes =p
Those little sample jars of paint? Yeah, they pretty much rock!
That room was yet another turning point. I couldn't walk past it without stopping and staring. I'd stand in there for the longest time, sunlight streaming in the windows, hands cradling my ever expanding belly, and I would finally allow myself to believe it was real. Soon there would be a little boy in our home using all of those baby things. It turned out it was sooner than I had dreamed. At the time his room was coming together I thought I had nearly three months left until I was to meet my boy but little did I know that it would be less than 8 weeks until I would see the face that would change my entire being.
Shower day!
The guest favors
Maternity Pictures
On November 30th I went to my high risk doctor in Lexington for a routine growth ultrasound. As my pregnancy had progressed I had had several of them as there are often concerns with placenta issues and sometimes growth in Ds pregnancies. It had already been decided that if I made it to 39 weeks gestation, that was it. On this day I was exactly 35 weeks. The night before my appointment I had organized my hospital bag, shaved my legs, and with great difficulty due to my belly, even painted my toes a pretty shade of bright pink. I honestly don’t know exactly what made me do these things. I told myself nothing would come of the appointment and had big plans to do some Christmas shopping afterwards, but somewhere in my subconscious I must have known otherwise.
When I got to my appointment, the ultrasound tech was a new one but very friendly. I knew the drill at this point as I had already been having non-stress tests three times weekly and usually an ultrasound to follow.
One of many non-stress tests during my pregnancy. Oh how he hated the monitor (as evidenced by his kicking at around 14 seconds and again around 1 minute)!
Something was different this time though. The technician was very quiet as she moved the transducer around on my stomach. I wasn't overly alarmed as I had already heard the reassuring swoosh of Cooper's heartbeat but I began to get impatient as the exam table grew more and more uncomfortable! I shifted my weight as my back and hips began to protest, and tried to find relief as I stared at the black/gray/white images on the screen. The silence seemed to grow more pronounced with each rhythmic tic of the clock. Finally, she gave me an artificial smile as she said, "Excuse me just a moment, I'm going to go get Dr. Hansen." I was left alone in the dimly lit room to ponder what was going on. Only moments later the door opened again and the doctor blithely made small talk as she placed the transducer on my belly. In a matter of seconds she was done and was looking at me very seriously and very intently. "I'm seeing that the blood flow to the baby from the umbilical cord is nearly absent. I'm concerned about his lack of movement as well, so I want you to go to the hospital to be placed on the monitor," she said in a very matter of fact tone.
My eyes widened and my throat suddenly felt very dry as I asked, "Am I having a baby today?"
"You very well may be if he doesn't look any better on the monitor...I want you to go straight to the hospital as soon as you leave here."
As had became my custom with this pregnancy I somehow managed to remain calm. I did my best to wipe the ultrasound gel from my pregnant belly and then adjusted my scarf. I thanked them both and said my goodbyes and heading out into the cold November wind. It was then that the enormity of what I had been told hit me and fear set in. I didn't think about the diagnosis or any of the events of the past several months. I just wanted my baby to be okay. A hard lump clogged my throat and hot tears filled my eyes as I lumbered to my car. I called B but got no answer since he was still at work. I left a message on his voicemail telling him not to worry but that I was heading to the hospital, all the while trying my hardest not to cry. Next I called my grandmother who had offered time and again to come with me to my appointment. In a show of trademark stubborn independence (and a desire for unfettered shopping) I had came alone. As the words spilled out explaining what had occurred I began to cry. By this time I was on my way and the traffic around me was blurred by my tears. Her voice breaking with emotion, she did her best to reassure me from 80 some odd miles away, but not without a good scolding for coming by myself. I was at the University of Kentucky Chandler Medical Center within minutes. I lugged my hospital bag out of the back seat and made my way to the shuttle bus that ran from the parking garage to the entrance. I sat and nervously toyed with the zipper on my bag as I tried again to call B. I was triaged, taken to a bed, and hooked up to the monitor. My dad’s brother worked in Lexington at the time and was by my side in no time as the unofficial family phone chain went to work. I’d honestly never considered myself exceptionally close with my extended family, but he sure was a sight for sore eyes, and from then on I’ve tried to make it a point to express my love and appreciation for my wonderful aunts and uncles a bit more. Jerry has always been funny, a joker, and his jovial nature was just what I needed when I had felt so scared and alone.
I was pretty much on a first name basis with the staff at the paint counter at Lowes =p
Those little sample jars of paint? Yeah, they pretty much rock!
Cooper's wonderful daddy, hard at work!
Finally done!!
That room was yet another turning point. I couldn't walk past it without stopping and staring. I'd stand in there for the longest time, sunlight streaming in the windows, hands cradling my ever expanding belly, and I would finally allow myself to believe it was real. Soon there would be a little boy in our home using all of those baby things. It turned out it was sooner than I had dreamed. At the time his room was coming together I thought I had nearly three months left until I was to meet my boy but little did I know that it would be less than 8 weeks until I would see the face that would change my entire being.
Shower day!
Maternity Pictures
On November 30th I went to my high risk doctor in Lexington for a routine growth ultrasound. As my pregnancy had progressed I had had several of them as there are often concerns with placenta issues and sometimes growth in Ds pregnancies. It had already been decided that if I made it to 39 weeks gestation, that was it. On this day I was exactly 35 weeks. The night before my appointment I had organized my hospital bag, shaved my legs, and with great difficulty due to my belly, even painted my toes a pretty shade of bright pink. I honestly don’t know exactly what made me do these things. I told myself nothing would come of the appointment and had big plans to do some Christmas shopping afterwards, but somewhere in my subconscious I must have known otherwise.
When I got to my appointment, the ultrasound tech was a new one but very friendly. I knew the drill at this point as I had already been having non-stress tests three times weekly and usually an ultrasound to follow.
One of many non-stress tests during my pregnancy. Oh how he hated the monitor (as evidenced by his kicking at around 14 seconds and again around 1 minute)!
Something was different this time though. The technician was very quiet as she moved the transducer around on my stomach. I wasn't overly alarmed as I had already heard the reassuring swoosh of Cooper's heartbeat but I began to get impatient as the exam table grew more and more uncomfortable! I shifted my weight as my back and hips began to protest, and tried to find relief as I stared at the black/gray/white images on the screen. The silence seemed to grow more pronounced with each rhythmic tic of the clock. Finally, she gave me an artificial smile as she said, "Excuse me just a moment, I'm going to go get Dr. Hansen." I was left alone in the dimly lit room to ponder what was going on. Only moments later the door opened again and the doctor blithely made small talk as she placed the transducer on my belly. In a matter of seconds she was done and was looking at me very seriously and very intently. "I'm seeing that the blood flow to the baby from the umbilical cord is nearly absent. I'm concerned about his lack of movement as well, so I want you to go to the hospital to be placed on the monitor," she said in a very matter of fact tone.
My eyes widened and my throat suddenly felt very dry as I asked, "Am I having a baby today?"
"You very well may be if he doesn't look any better on the monitor...I want you to go straight to the hospital as soon as you leave here."
As had became my custom with this pregnancy I somehow managed to remain calm. I did my best to wipe the ultrasound gel from my pregnant belly and then adjusted my scarf. I thanked them both and said my goodbyes and heading out into the cold November wind. It was then that the enormity of what I had been told hit me and fear set in. I didn't think about the diagnosis or any of the events of the past several months. I just wanted my baby to be okay. A hard lump clogged my throat and hot tears filled my eyes as I lumbered to my car. I called B but got no answer since he was still at work. I left a message on his voicemail telling him not to worry but that I was heading to the hospital, all the while trying my hardest not to cry. Next I called my grandmother who had offered time and again to come with me to my appointment. In a show of trademark stubborn independence (and a desire for unfettered shopping) I had came alone. As the words spilled out explaining what had occurred I began to cry. By this time I was on my way and the traffic around me was blurred by my tears. Her voice breaking with emotion, she did her best to reassure me from 80 some odd miles away, but not without a good scolding for coming by myself. I was at the University of Kentucky Chandler Medical Center within minutes. I lugged my hospital bag out of the back seat and made my way to the shuttle bus that ran from the parking garage to the entrance. I sat and nervously toyed with the zipper on my bag as I tried again to call B. I was triaged, taken to a bed, and hooked up to the monitor. My dad’s brother worked in Lexington at the time and was by my side in no time as the unofficial family phone chain went to work. I’d honestly never considered myself exceptionally close with my extended family, but he sure was a sight for sore eyes, and from then on I’ve tried to make it a point to express my love and appreciation for my wonderful aunts and uncles a bit more. Jerry has always been funny, a joker, and his jovial nature was just what I needed when I had felt so scared and alone.
After what seemed an eternity, I was able to speak to Brandon and he left work and probably broke several traffic laws to make it to the hospital.
Another ultrasound, an IV, and several doctors later it was decided that considering the growth issues, cord flow issues, and decreased movement, it would be best for all involved to go ahead and take the baby. That’s such a strange phrase, isn’t it? Anyway, just like that, a cesarian section was scheduled for 7am the next morning, Thursday December 1st. I breathed somewhat of a sigh of relief and you would think that was the end of the fear and dramatics, but if you'll recall from my very first post ever, Cooper was born at 4:51am...not 7am like it had been scheduled. We had one very scary night to go.
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