When A was fighting for her life for 12 weeks in the NICU, she received 3 separate blood transfusions. My sister, R, made a commitment during that time that she would donate 3 pints of blood to "pay it forward". Karma, you know?
This is amazing, because my sister is terrified of giving blood. I am too; I have never given blood, and when she told me her plan I was partly mortified and partly in awe. I don't know if I would be able to do it, even though I know that giving blood is such a life-saving thing to do. I mean, it saved my own baby's life.
Anyhow, this week she donated her third and final pint of blood in my daughter's honor. I cannot express how proud I am of my sister. Actually, I am proud of her always, as she is one of the most accomplished women I know. She works full-time in corporate America, yet still finds time to be a loving wife, an involved mother, room-mom, Girl Scout leader, and Sunday School teacher, among other endeavors. Hearing about her blood donation, it probably wouldn't surprise you to know that she is very compassionate, empathic, and a great friend. All in all, she kicks major ass.
Below is the (edited) letter she sent out to her co-workers (they were doing a blood drive at her company). Three co-workers who joined my sister in donating, all which had never given blood before and were scared themselves.
4 years ago, my niece A was born with many many many birth defects. Today, considering everything she has been through, she is absolutely thriving and she is a beautiful happy girl. She is a true light in my family's lives!
In those first weeks after she was born, she required 3 blood transfusions. In my countless prayers, I committed that I would repay those 3 pints of blood since they were so readily available when A needed them. This is a big deal for me because I am tragically afraid of giving blood. It is a real sacrifice for me to do and requires facing a lot of fears. I have "repaid" 2 of the pints so far and have one more to go.
I just noticed a sign that there will be a blood drive next Monday and Tuesday here at xxx. I am going to fulfill my commitment and was wondering if anyone would like to join me? If you don't wish to give blood, would anyone consider going with me for moral support and to hold my hand (seriously!)?
Thank you, R....and thank you to the anonymous donors who made that ultimate gift that helped to save A's life.
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
November 7, 2010
October 13, 2010
A Snapshot of the NICU (part 1)
When A was born, she was placed in the NICU at Children's Hospital due to numerous medical complications present from birth. She was hospitalized for almost 12 weeks. I was there every day---every single morning, and almost every night. I would have been there every afternoon, as well, except that my son, D, was 2 at the time and also needed his mama. Because I was there all the time, I got to know a lot of the babies and parents.
One baby girl was brought in sometime during A's stay. I don't know exactly what her medical diagnosis was, but she had some sort of red hemangioma covering over half her face. She was a beautiful girl, so tiny. Her parents couldn't have been older than 25; my guess is that they were much younger than that. Whatever her diagnosis, it didn't appear to be good. The father told me that the doctors were in fact writing a paper about her, as they had never seen her presentation before.
"But we have hope", he told me. "Her vitals are good. Blood pressure, temperature, heart rate...they all look good".
That was the extent of the conversation I ever had with the parents, and they were soon transferred out of A's room. I never saw them again, and have no idea what became of their daughter. I can only hope and pray that she survived, and in fact is now a thriving four-year-old, much the way my own miracle baby is. But I'll never know.
What struck me about that exchange was how fervently he clung to his daughter's vital signs. It was the only good news he had; doctors were writing a paper about his daughter, and not because it was a good diagnosis! But there was a shred of hope, and that's what he was focusing on. When you are in the NICU, or ICU, or heck, in any bad situation in life, you need to focus on whatever positive, whatever good news you can find. It keeps you sane, it gives you the will to carry on day by day, when all other feedback is negative and it's easy to give up hope.
I hope those young parents are in a better place now, and that their little girl is doing fine---with good vitals and all.
One baby girl was brought in sometime during A's stay. I don't know exactly what her medical diagnosis was, but she had some sort of red hemangioma covering over half her face. She was a beautiful girl, so tiny. Her parents couldn't have been older than 25; my guess is that they were much younger than that. Whatever her diagnosis, it didn't appear to be good. The father told me that the doctors were in fact writing a paper about her, as they had never seen her presentation before.
"But we have hope", he told me. "Her vitals are good. Blood pressure, temperature, heart rate...they all look good".
That was the extent of the conversation I ever had with the parents, and they were soon transferred out of A's room. I never saw them again, and have no idea what became of their daughter. I can only hope and pray that she survived, and in fact is now a thriving four-year-old, much the way my own miracle baby is. But I'll never know.
What struck me about that exchange was how fervently he clung to his daughter's vital signs. It was the only good news he had; doctors were writing a paper about his daughter, and not because it was a good diagnosis! But there was a shred of hope, and that's what he was focusing on. When you are in the NICU, or ICU, or heck, in any bad situation in life, you need to focus on whatever positive, whatever good news you can find. It keeps you sane, it gives you the will to carry on day by day, when all other feedback is negative and it's easy to give up hope.
I hope those young parents are in a better place now, and that their little girl is doing fine---with good vitals and all.
October 1, 2010
Today's Amazing Revelation
I had the oddest revelation today.
I got together with some of the moms from A's new preschool class for lunch. All of these women are new to me; last year A went to the morning session, and this year she's in the afternoon session, and there has been no overlap of kids from year to year. I was excited to get together and meet some of the moms, as I see them at drop-off and pick-up but really hadn't had a chance to actually talk to them yet beyond basic pleasantries.
Anyhow, somehow the issue of A being in therapy came up. Someone asked what kind of therapy she is in, so I answered "speech therapy, physical therapy, adapted P.E., deaf/hard-of-hearing therapy, horse therapy, and soon we'll be adding occupational therapy". She then asked me why A needs so many therapies. It hit me: These women just met A. They have no clue about her medical background. They don't know that she used to have a breathing tube, feeding tube, just learned to walk this year, etc.
It was quite the revelation, to say the least. Until this point, everyone in my life fell into one of two categories: people that were with me from "the beginning", and people that I met in more recent years.
Many of my current friends (and all my family, of course) were there in the beginning. These are the people who knew me before A was born. They knew me pregnant with her, and saw me through the grueling 12 weeks in the NICU. They are the ones who called me all the time, who brought me meals, who watched D (then age 2) so that I could spend time at the hospital. They were with me when I was agonizing over the decisions to get her g-tube, and then her trach. They were my shoulders to lean on when I worried about her not meeting her milestones on time. I quickly learned, through the whole ordeal, who were my true friends and who weren't.
On the other hand, many of my current friends are newer. These are people I met AFTER A was born. I met some people taking mommy-and-me and music classes with A. I met the moms through her preschool. I met even more moms through my son, D. Since A was born, D went through 3 years of preschool and kindergarten. When all of these moms met me and my family, they met a mom who had a daughter with a trach and a feeding tube. A came "as is". My new friends might ask why she had a trach, or why she wasn't walking yet, but they were new to her story. However, they quickly became A's cheerleaders, and were just as overjoyed as my older friends when she started to hit her milestones, walked, got her tubes out, etc.
It hit me today that every person I meet from here on out--whether it is a mom from A's preschool or D's 1st grade class, someone from my synagogue, or a new neighbor--will not know what we've been through. Sure, they might see a beautiful little girl with glasses and hearing aids, who has a speech delay and can't quite run or jump the way other kids her age can. But they have no clue that she used to have a plastic tube in her neck. Or a plastic tube in her tummy. Or that she didn't walk until this year, at age 3 1/2. Or that her speech is 2000% improved from where it was even a year ago. Or that she almost died but now is a living miracle. They wont' know until, or unless, I tell them.
Wow. It's a whole new chapter in my life. I think I like it!
I got together with some of the moms from A's new preschool class for lunch. All of these women are new to me; last year A went to the morning session, and this year she's in the afternoon session, and there has been no overlap of kids from year to year. I was excited to get together and meet some of the moms, as I see them at drop-off and pick-up but really hadn't had a chance to actually talk to them yet beyond basic pleasantries.
Anyhow, somehow the issue of A being in therapy came up. Someone asked what kind of therapy she is in, so I answered "speech therapy, physical therapy, adapted P.E., deaf/hard-of-hearing therapy, horse therapy, and soon we'll be adding occupational therapy". She then asked me why A needs so many therapies. It hit me: These women just met A. They have no clue about her medical background. They don't know that she used to have a breathing tube, feeding tube, just learned to walk this year, etc.
It was quite the revelation, to say the least. Until this point, everyone in my life fell into one of two categories: people that were with me from "the beginning", and people that I met in more recent years.
Many of my current friends (and all my family, of course) were there in the beginning. These are the people who knew me before A was born. They knew me pregnant with her, and saw me through the grueling 12 weeks in the NICU. They are the ones who called me all the time, who brought me meals, who watched D (then age 2) so that I could spend time at the hospital. They were with me when I was agonizing over the decisions to get her g-tube, and then her trach. They were my shoulders to lean on when I worried about her not meeting her milestones on time. I quickly learned, through the whole ordeal, who were my true friends and who weren't.
On the other hand, many of my current friends are newer. These are people I met AFTER A was born. I met some people taking mommy-and-me and music classes with A. I met the moms through her preschool. I met even more moms through my son, D. Since A was born, D went through 3 years of preschool and kindergarten. When all of these moms met me and my family, they met a mom who had a daughter with a trach and a feeding tube. A came "as is". My new friends might ask why she had a trach, or why she wasn't walking yet, but they were new to her story. However, they quickly became A's cheerleaders, and were just as overjoyed as my older friends when she started to hit her milestones, walked, got her tubes out, etc.
It hit me today that every person I meet from here on out--whether it is a mom from A's preschool or D's 1st grade class, someone from my synagogue, or a new neighbor--will not know what we've been through. Sure, they might see a beautiful little girl with glasses and hearing aids, who has a speech delay and can't quite run or jump the way other kids her age can. But they have no clue that she used to have a plastic tube in her neck. Or a plastic tube in her tummy. Or that she didn't walk until this year, at age 3 1/2. Or that her speech is 2000% improved from where it was even a year ago. Or that she almost died but now is a living miracle. They wont' know until, or unless, I tell them.
Wow. It's a whole new chapter in my life. I think I like it!
September 27, 2010
Some Assembly Required
When my daughter, A, now age 4, came home from twelve weeks in the NICU, she also came home with a g-tube (feeding tube) in her tummy. It came with a lot of equipment (pump, bags, IV pole, syringes, etc) and required a lot of care (cleaning the site, putting gauze around it to soak up leakage, etc). My mother remarked that A came with "some assembly required".
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
She did not know how true those words would become.
A month after coming home from the NICU, A went back into the hospital to get a tracheostomy. THAT came with a lot of equipment (catheters, suction pumps, mist machines, nebulizers, etc) and required a lot of care (suctioning mucus, changing the trach, etc). We very much had to "assemble" our daughter every day, making sure that her g-tube and trach were well taken care of and that we had plenty of supplies on hand.
A month after getting her trach, at the age of 5 months, A got her hearing aids. We chose pretty one (purple aids with pink molds) but even pretty hearing aids require care (testing the battery daily, cleaning the molds, etc).
At this point, it wasn't a joke anymore that A came "some assembly required". She truly did!
When she was 2 years old, and still not walking by herself, our physical therapist helped us get a gait trainer (walker) for her. This enabled A to be upright, instead of crawling, and walk with assistance. It was big and bulky and cumbersome, but she loved being able to walk around at school with the other kids.
She needed shoe inserts at this age, too, to help correct the way she was stepping.
Also around this time, A's opthamologist recommended that she wear glasses. Not really for correction; her vision is not near- or far-sighted. However, A has coloboma, meaning that she has gaps in both of her optic nerves. Her left eye is legally blind, which means that we need to protect her right eye as much as possible. Plastic glasses offer a lot of protection, so even though I didn't want to add ANOTHER device to my daughter's body, we got the glasses. I really want to protect what she has.
So, by the time she was 3 years old, my daughter was the ultimate in coming "some assembly required". She had a g-tube, trach, hearing aids, glasses, and a walker. At times it seemed I was caring for a 90 year old, not a toddler! At the height of her needs, we had to lug with us: her portable feeding pump; Pediasure and a bag to put it in; extension tubing and syringes for the g-tube; her suction pump for the trach; tons of extra catheters; an extra emergency trach and trach ties; plus scissors, paper tape, gauze, extra hearing aid batteries, and various sundry other items. This doesn't include the emergency kit I always had in my car with even more extra supplies, including an ambu bag for CPR and oxygen (thank God I never had to use either!)
Slowly but surely, some of her assisted devices have dropped away. She began to walk unassisted earlier this year, and had no use for the walker (in fact, I just gave it away to a family who needed one but whose insurance company wouldn't provide one). And of course she got her g-tube and trach removed this past July. Now we only have her hearing aids and glasses, two devices she will likely always need. Compared to what we had been dealing with, this is nothing!
I feel so grateful for all that we DON'T have to do for A these days. We are lucky that most of her devices were gone by age 4. I will never forget the "old days"...lugging equipment, making sure all of our devices were being fully charged overnight, hearing the loud sounds of the mist machine at night. But all of those devices, all the tubing in her body, saved her life. She would not be alive, or thriving the way she is, without them.
September 16, 2010
How Music Proved Medicine Wrong
A friend of mine on Twitter, Barbara, posted on her blog that she is having a "blog carnival". She challenged her friends to write a post "about the place of music in the life of your child." This is a no-brainer to me; music plays such a big part in my life, and the life of my two children. I could easily write a post about how much we love music; about the Mommy-and-Me music classes I've taken with both kids; about how I rarely play "kid" music in the car but instead play them "Mama music" to expose them to what I love to listen to; or about how soon I'll be starting D with some kind of music lessons, perhaps on piano or guitar.
Instead, however, I will write about how music let me know that my daughter, A, isn't completely deaf.
As I wrote about earlier this week, A has profound hearing loss (is practically deaf) in her left ear, and has mild-to-moderate hearing loss in her right ear (she has normal hearing in her right ear with her hearing aid). When she was in the NICU for 12 weeks, she failed her newborn test. She then had further testing (the BAER and the ASSR) and we were told by the audiology department that she was completely deaf.
This not only devastated me, but confused me. You see, not only did A seem to respond to my voice, but she also seemed to respond to music. I had brought in a portable CD player, and would play her music every morning and every evening. Some of the music was classical music from the Baby Einstein series, but I most often played her my favorite band--the Beatles--in the form of a CD called "Bedtime with the Beatles" which was instrumental versions of Beatles songs. She always seemed to respond when I put the music on.
When I told the audiologist this, she responded that A probably felt the vibrations from the CD player, and that was what she was responding too. But I knew better. The CD wasn't in her bassinet; it was on the counter behind the bed. She couldn't feel the vibrations. I KNEW, in my heart, that she heard the music, at whatever level she was able to hear. I just knew she wasn't 100% deaf.
Of course, further testing showed that I was right. She WAS hearing the music. Music was the key to me advocating for further testing. To this day, A loves music. Every time a new song comes on the radio she asks what the title is. She likes to "dance" to the rhythm in her carseat. She enjoys banging on our piano and playing on our child-sized drum set. I am so glad that A can hear, because I get to share with her one of my greatest pleasures in life: the joy of music.
Instead, however, I will write about how music let me know that my daughter, A, isn't completely deaf.
As I wrote about earlier this week, A has profound hearing loss (is practically deaf) in her left ear, and has mild-to-moderate hearing loss in her right ear (she has normal hearing in her right ear with her hearing aid). When she was in the NICU for 12 weeks, she failed her newborn test. She then had further testing (the BAER and the ASSR) and we were told by the audiology department that she was completely deaf.
This not only devastated me, but confused me. You see, not only did A seem to respond to my voice, but she also seemed to respond to music. I had brought in a portable CD player, and would play her music every morning and every evening. Some of the music was classical music from the Baby Einstein series, but I most often played her my favorite band--the Beatles--in the form of a CD called "Bedtime with the Beatles" which was instrumental versions of Beatles songs. She always seemed to respond when I put the music on.
When I told the audiologist this, she responded that A probably felt the vibrations from the CD player, and that was what she was responding too. But I knew better. The CD wasn't in her bassinet; it was on the counter behind the bed. She couldn't feel the vibrations. I KNEW, in my heart, that she heard the music, at whatever level she was able to hear. I just knew she wasn't 100% deaf.
Of course, further testing showed that I was right. She WAS hearing the music. Music was the key to me advocating for further testing. To this day, A loves music. Every time a new song comes on the radio she asks what the title is. She likes to "dance" to the rhythm in her carseat. She enjoys banging on our piano and playing on our child-sized drum set. I am so glad that A can hear, because I get to share with her one of my greatest pleasures in life: the joy of music.
July 5, 2010
Doctors Aren't Always Right
This time of year we start getting into anniversaries....none of them good. You see, A's birthday was last week, and since she spent twelve weeks in the NICU, we had a whole summer of events that I'd just as soon forget: Her heart surgery at 10 days old to correct her vascular ring. Getting her g-tube placed at 2 months. The day we found out that she'd had a prenatal stroke. The day we learned she had failed her hearing tests and was deaf/hard-of-hearing. The list goes on and on, and I promise I won't bore my readers all summer by announcing things like "today is the anniversary of when we found out her vocal chord was paralyzed"....but today IS an important anniversary that I would like to discuss.
Four years ago today, on July 5, A was transferred by ambulance from the NICU in the local hospital where she was born to the NICU at Children's Hospital, which had a much higher level of care. To say that J and I were in shock was an understatement. First, I had just been discharged a few days before, without my baby, and was having to go back and forth to the NICU, pump breastmilk several times a day, spend time with my 2-year-old son, and heal from the c-section I'd had. I was physically, mentally, emotionally, and spiritually exhausted. Following the ambulance down to Children's was surreal. And just checking in was jolting: we'd gone from a small, local NICU with maybe 2 babies in it, to the hustle and bustle of Children's Hospital, whose NICU had about 40 babies. My baby didn't belong there---yet she did, and she belonged there for quite a long time.
That night, J and I came back to visit A (we had gone home to spend time with D). When we got there, a neonatologist approached us and told us that A had a heart defect (the aforementioned vascular ring) and would need heart surgery, and that additionally she had diagnosed A with DiGeorge Syndrome. Apparently, if you put together a vascular ring plus a cleft lip it points to DiGeorge Syndrome. She didn't tell us much....just gave us a handout about the disorder, and told us to "disregard the section in the handout about mental retardation". She spent about 5 minutes with us, talking to us in a very matter-of-fact detached way, gave us a handout, and left. That was it.
That night was terrible. I cried. I threw up. J cried (the first and only time I had seen him cry throughout that whole terrible summer). We were scared about her future...not only her physical health, but now her cognitive health. Remember, this was just the beginning of her life, and we had yet to learn all the other birth defects she had (vision issues, hearing issues, the prenatal stroke, etc). This was just the tip of the iceberg.
But here's the thing: A DOES NOT have DiGeorge Syndrome. They did a blood test and it clearly shows that her 22nd chromosome is intact (in DiGeorge Syndrome a piece of the 22nd chromosome is deleted). So, she does NOT have this syndrome...the neonatologist was WRONG.
It upset me then, and it pisses me off now, that this doctor made a diagnosis without knowing all the facts (waiting two extra days for the blood test to come back would have shown her that she had misdiagnosed). That would have saved me and J from a few days of needless worry, fretting and googling. It also made me angry that she would make such a bold diagnosis and simply give us, the parents, a little handout and then walk away.
Nonetheless, today is the anniversary of when I realized that doctors can be wrong...that you can never give up hope....that you can't go by a handout or an article or a google document....that children will prove you wrong, even WITH a correct diagnoses. No one can tell the future. Our kids have NOT read the books of what they are not "supposed to" be able to do. In essence, today is the anniversary of my eyes being opened, of asking questions, of hoping and praying.
And because of her intact 22nd chromosome? Now 22 is one of my lucky numbers!
Four years ago today, on July 5, A was transferred by ambulance from the NICU in the local hospital where she was born to the NICU at Children's Hospital, which had a much higher level of care. To say that J and I were in shock was an understatement. First, I had just been discharged a few days before, without my baby, and was having to go back and forth to the NICU, pump breastmilk several times a day, spend time with my 2-year-old son, and heal from the c-section I'd had. I was physically, mentally, emotionally, and spiritually exhausted. Following the ambulance down to Children's was surreal. And just checking in was jolting: we'd gone from a small, local NICU with maybe 2 babies in it, to the hustle and bustle of Children's Hospital, whose NICU had about 40 babies. My baby didn't belong there---yet she did, and she belonged there for quite a long time.
That night, J and I came back to visit A (we had gone home to spend time with D). When we got there, a neonatologist approached us and told us that A had a heart defect (the aforementioned vascular ring) and would need heart surgery, and that additionally she had diagnosed A with DiGeorge Syndrome. Apparently, if you put together a vascular ring plus a cleft lip it points to DiGeorge Syndrome. She didn't tell us much....just gave us a handout about the disorder, and told us to "disregard the section in the handout about mental retardation". She spent about 5 minutes with us, talking to us in a very matter-of-fact detached way, gave us a handout, and left. That was it.
That night was terrible. I cried. I threw up. J cried (the first and only time I had seen him cry throughout that whole terrible summer). We were scared about her future...not only her physical health, but now her cognitive health. Remember, this was just the beginning of her life, and we had yet to learn all the other birth defects she had (vision issues, hearing issues, the prenatal stroke, etc). This was just the tip of the iceberg.
But here's the thing: A DOES NOT have DiGeorge Syndrome. They did a blood test and it clearly shows that her 22nd chromosome is intact (in DiGeorge Syndrome a piece of the 22nd chromosome is deleted). So, she does NOT have this syndrome...the neonatologist was WRONG.
It upset me then, and it pisses me off now, that this doctor made a diagnosis without knowing all the facts (waiting two extra days for the blood test to come back would have shown her that she had misdiagnosed). That would have saved me and J from a few days of needless worry, fretting and googling. It also made me angry that she would make such a bold diagnosis and simply give us, the parents, a little handout and then walk away.
Nonetheless, today is the anniversary of when I realized that doctors can be wrong...that you can never give up hope....that you can't go by a handout or an article or a google document....that children will prove you wrong, even WITH a correct diagnoses. No one can tell the future. Our kids have NOT read the books of what they are not "supposed to" be able to do. In essence, today is the anniversary of my eyes being opened, of asking questions, of hoping and praying.
And because of her intact 22nd chromosome? Now 22 is one of my lucky numbers!
June 29, 2010
I Didn't Know What I Didn't Know
Tomorrow my precious daughter, A, turns 4.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
While tomorrow I will be celebrating how far she's come, and how miraculous her life is, today I am reflecting on who I was four years ago today. Because, you see, four years ago today I was innocent.
The day before my daughter was born, my primary concern was about my son, D. He had just turned 2, and I was very worried about how the addition of a new sibling would affect him. I had heard all the advice about how to get the older sibling involved in caring for the newborn....helping to feed a bottle, change a diaper, give a bath. How could I have known that D would meet A a total of 2 times, in the hospital, before she was whisked away to the NICU where he would not lay eyes on his new sister for 12 more weeks? How could I have known that D couldn't help with a bottle (she came home getting 100% of her nourishment from her g-tube) or give her a bath (her trach necessitated VERY careful handling in the tub on my part).
The day before my daughter was born, I had rarely considered that kids can have prenatal strokes. Sure, in a previous life I had worked doing language research with kids, and one population that we did language testing on were kids that had had strokes...but really, in my mind, strokes were largely for older people.
The day before my daughter was born, I only thought about cleft lips in reference to the Smile Train ads I saw on tv and in magazines. You know, kids in third-world countries. It never occured to me that my own child could be born with a cleft lip.
The day before my daughter was born, I'd never heard of the word "stoma", let alone had to learn to care for two of them and the tubes that are inserted in them (her g-tube and trach).
The day before my daughter was born, I assumed that I would have another healthy child, much like my son, who is healthy and typically-developing. I wouldn't have believed that my daughter would be born with a heart defect, a balance impairment, deaf/hard-of-hearing, and vision-impaired, among other birth defects she has.
The day before my daughter was born, I thought that NICUs were for other kids.
The day before my daughter was born, I didn't fully know and appreciate the power of prayer.
The day before my daughter was born, I was incomplete. I didn't know it at the time, but having my daughter filled the missing void.
The day before my daughter was born, I had no idea how strong I was. I had no clue the type of mother I would be expected to become. I didn't know I would have to become a therapist, teacher, and advocate as well. I didn't know that I could suffer hearing bad news heaped upon bad news in the NICU and still get through the day. I knew I was an optimist, but I didn't truly know that I would always look for the silver lining.
The day before my daughter was born, I had no concept that some kids don't develop with a little bit of help from their parents. Some children need their parents, physical therapists, occupational therapists, speech therapists, developmental teachers, a team of physician specialists, hearing aids, glasses, walkers, feeding tubes, breathing tubes, and sheer will power to develop.
The day before my daughter was born, I was selfish. Yes, having my son made me less selfish--you can't be a good mother and be totally selfish at the same time---but having my daughter made me put all of my needs and wants aside and focus solely on what was in the best interest of my baby.
Tomorrow I will celebrate the miracle of A's life. Today, I remember the innocent, care-free mother I once was....and know that because of my daughter, I am a much better person today. Thank you, my amazing girl.
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