"Meghan! Meghan! Earth to Meghan!" I said impatiently.
"Hey Megsy Rose! Are you listening to me? Can you please get your pajamas on?" I sighed as more attempts at saying her name in different cadences and tones met no response.
Silence from Meghan ensued as she continued scanning the bathroom with intense interest. I was standing right next to her. Her towel was wrapped around her as she peeked behind the closed shower curtain. I could feel my impatience growing.
In my thoughts, I heard, "Oh come on kid! Really? Seriously? You can't hear me at all. Really? Good grief!"
And then my thoughts leaped from my mouth, "Gosh, you have such A.D.D."
Of course, she suddenly heard that.
"I have what Momma?"
"Whoops," I thought.
"Um. Oh. Well, ADD stands for attention deficit disorder. It means you have trouble paying attention," I stammered.
And then my former micro-preemie, smart-as-a-whip, daughter said, "I'm a preemie, Mom."
As I searched my thoughts for a response, I couldn't believe that Meghan had grown up enough to deduce that former prematurity and ADD might go together. "Well, Megs, you used to be a preemie. If you were still a preemie, you would be living in a "box" in the hospital still growing. You are a big six-year old girl now. You don't live in a box (isolette)."
"Why was I in the box? I don't remember the box," she inquired.
"Well Meghan, when you were born 13 weeks early, you body wasn't quite ready to be born yet. The box kept you warm and safe. Your body still had a lot of growing to do, and the box was kind of like my tummy was for you. One thing that wasn't done growing yet was your lungs. We had to wait for your lungs to grow before we could bring you home." As I answered, I helped her into her pajamas to expedite the process.
"Oh. OK. Why did I come out early?"
"Remember that I was very sick. I had preeclampsia, which is kind of like having an allergy to having a baby in your tummy."
"Did you have a runny nose and sneeze, Mom?"
Her question elicited a smile across my face. "No, not an allergy like that. My blood went way too fast in my body (high blood pressure), and then my kidneys began to shut down."
I took my index finger and pointed to her lower back. "This is where you have kidneys. There are two in your body, and they clean the bad stuff out of your blood. That bad stuff gets kicked out through your pee. Anyway, when I had you in my tummy, my kidneys didn't want to work anymore. If my kidneys stopped working, I would have gotten too sick to keep you alive. So, the smart doctors said they would take you out of my tummy using surgery so my preeclampsia would go away."
"Oh, where did I come out again?"
As I pointed to my lower stomach, I said, "Right here."
"Where did Grace come out?" Her older sister was born by c-section due to preeclampsia as well, but just six weeks early.
"In the same spot, Megs."
"What did I do when I came out?"
"Well, I was having a surgery but your daddy told me that you mewed like a kitten. That was before they put the tube in your lungs to help you breathe," I responded.
"But I could breathe when I was born, right?"
"Yes, you could, but you were too little. You got so tired from breathing that they helped you with the breathing machine until your lungs grew stronger."
"Oh," she dryly remarked with what seemed to be understanding.
"Hey Mom! Do you think we could go visit where I lived in the box?"
"Sure, Megsy. We could do that."
"Yeah, I wanna see where I used to live. Do all the preemies have 'tension order too?"
"I don't know if they all have attention deficit disorder, but I remember your preemie doctor told us that it is really common for babies born 13 weeks early. You aren't the only one. Momma had ADD growing up, and Uncle Tim, too. People born not-too-soon can have ADD, too. I was born 1 week late."
"Oh."
"Just remember that having problems with paying attention does not mean you can't pay attention, Meghan. Momma learned to do it. Uncle Tim learned how as well. You just need to try to listen. Remember to listen. As you grow up, it will be easier."
"I know, Mom. You always tell me that kids are still learning how to be good people. I'm learning. I just need to practice."
God, I love that kid. Amazing...
Showing posts with label Prematurity Outcomes. Show all posts
Showing posts with label Prematurity Outcomes. Show all posts
Sunday, January 02, 2011
Friday, April 02, 2010
They're Here
It usually begins this time of year.
They come.
They come without me inviting them to my life.
They come like perfectly timed bombs.
They come to remind me.
They come to be remembered.
They bring the rawest guilt and grief even nearly 8 years since their first visit.
They find a way to unsettle me...unnerve me.
They are not wanted.
They are flashbacks of my pregnancies spiraling down the rabbit hole.
Severe preeclampsia robbed me of a normal pregnancy experience, whatever the hell that is.
It nearly claimed my life twice.
It nearly claimed the lives of my children.
It created two premature babies with lifelong side effects.
It changed my relationships with people.
It caused me post traumatic stress.
It is an evil beast I'd like to slay.
It was not fair.
It was not my fault.
It just happens to 12% of all pregnant women.
It happened to me.
It is unwanted here.
Yet, it reminds me of my precious gifts in Grace Ann and Meghan Rose.
So, I'll let severe preeclampsia and NICU flashbacks stay for a few days, but then they can "hit the bricks."
I'm ready to celebrate Grace and Meghan instead.
They come.
They come without me inviting them to my life.
They come like perfectly timed bombs.
They come to remind me.
They come to be remembered.
They bring the rawest guilt and grief even nearly 8 years since their first visit.
They find a way to unsettle me...unnerve me.
They are not wanted.
They are flashbacks of my pregnancies spiraling down the rabbit hole.
Severe preeclampsia robbed me of a normal pregnancy experience, whatever the hell that is.
It nearly claimed my life twice.
It nearly claimed the lives of my children.
It created two premature babies with lifelong side effects.
It changed my relationships with people.
It caused me post traumatic stress.
It is an evil beast I'd like to slay.
It was not fair.
It was not my fault.
It just happens to 12% of all pregnant women.
It happened to me.
It is unwanted here.
Yet, it reminds me of my precious gifts in Grace Ann and Meghan Rose.
So, I'll let severe preeclampsia and NICU flashbacks stay for a few days, but then they can "hit the bricks."
I'm ready to celebrate Grace and Meghan instead.
Sunday, December 14, 2008
Once Upon a Time...
Once upon a time
Their chests squeezed with all their might
To inhale life
Once upon a time
Their livers erratically managed
To maintain their lives
Once upon a time
Their bodies seemed amazingly and wrongly
Too small
Once upon a time
Their mommy cursed her body and its inability
To sustain their lives
Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger
Once upon a time
Her eyes could not yet open
To see the world around her
Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy
Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life
Once upon a time
A central line required her first hair cut
To save her life
Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times
Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals
Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress
Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual
Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion
Once upon a time
Precious babies around our girls
Earned angels wings
Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding
Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night
Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right
Once upon a time
We were forced to become members of a NICU club we did not want
To join
But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love
And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up
Their chests squeezed with all their might
To inhale life
Once upon a time
Their livers erratically managed
To maintain their lives
Once upon a time
Their bodies seemed amazingly and wrongly
Too small
Once upon a time
Their mommy cursed her body and its inability
To sustain their lives
Once upon a time
Their tiny toothpick sized fingers wrapped
Themselves around my gigantic pointer finger
Once upon a time
Her eyes could not yet open
To see the world around her
Once upon a time
Her skin and eyes glowed so pumpkin orange
That she needed phototherapy
Once upon a time
Her heart rate flatlined and a team of doctors and nurses
Rushed to save her life
Once upon a time
A central line required her first hair cut
To save her life
Once upon a time
A generous blood donor donated O negative blood
To tranfuse the life back into her body three times
Once upon a time
Monitors measured breaths, heart rates, and temperatures
To alert their nurses of their vitals
Once upon a time
We spent long hours bedside at their incubators
To never miss set backs or much desired progress
Once upon a time
Praying for progress and hoping for miracles
Was a minute-by-minute ritual
Once upon a time
We experienced jealousy at what should have been
Even though it felt wrong to have that emotion
Once upon a time
Precious babies around our girls
Earned angels wings
Once upon a time
We thanked God for each new CC added
That didn't result in a residual or stopping feeding
Once upon a time
We praised the miracle of modern science
As apnea monitors blared in the dark of night
Once upon a time
We had daily homework of OT, PT, and speech therapy
To make sure their bodies worked right
Once upon a time
We were forced to become members of a NICU club we did not want
To join
But with time and acceptance
We've learned that our former preemies
Are miracles who still need our special protection and love
And a NICU reunion reminds us that we are
Life time members of that NICU club who will always know
That former preemies will always be preemies inside and out and do not just catch up
Thursday, November 13, 2008
November is Prematurity Awareness Month
November is Prematurity Awareness Month.
A little more than 6 years ago, I learned that my first baby would be born too soon at 34 weeks gestation. My precious cargo, Grace Ann, entered this world early because of my preeclampsia. She was my biggest baby weighing in at 3 pounds, 14.5 ounces, and 17 1/2 inches long. She had difficulty breathing, eating, and growing. To this day, Grace still deals with issues related to her prematurity, but nonetheless is doing well in first grade. Can she really be 6 already? Wow! I'm eternally grateful for Grace and the wonderful neonatal care she received.
A little more than 4 years ago, I learned that my second baby would be born extremely too early at 27 weeks gestation. My tiny peanut, Meghan Rose, was born a preemie because I developed preeclampsia yet again. She was unbelievably small to me weighing in at just 725 grams, aka 1 pound, 9.5 ounces, and 13 inches long. She was called a micropreemie, and proved herself to be a fighter every scary step of the way. Today, she is in kindergarten, and keeping up with her classmates even though she is still very tiny. We're happy she is growing, albeit ever so slowly, but she is happy and quite the character...ever so feisty like she was in her incubator.
Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.
In tribute to the miracle baby survivors of preeclampsia, please consider donating to the March of Dimes. I would be so proud if you could. Grace & Meghan thank you too.
Jen, mom of Grace & Meghan
Friday, May 23, 2008
More Courage Through Sharing
For the monthly blog carnival, Finding Courage Through Sharing, the carnival host Michelle gave a topic of sharing something that you wish other people understood about your life with a child or children facing medical challenges. Well as a parent to two former premature babies who also happen to have a liver genetic disorder called Alpha-1 Antitrypsin Deficiency, I could go on and on about this subject. Nonetheless, I decided to focus on their former prematurity for this entry.
Prematurity does not end when a baby is discharged from the neonatal intensive care unit (NICU). Preemies do not catch up by the time they are 2 or 3…perhaps in size, but not in the way their brains have been shaped. Prematurity is life long. Premature babies have brains which are wired differently that full term children. This is because they have to deal with sensory input long before their brains are ready to deal with the information they are processing after birth. You may have heard about NICUs that keep the lights down low, encourage a quiet tone of voice, and do such things as placing bags of IV saline next to the babies to make it feel like they are in the womb. While I applaud these efforts, they aren’t the same as a good, old fashioned womb.
There are many sources of misinformation to contend with as a parent of two former preemies such as urban legends, media, or your neighbor down the street. Former preemies are not the same or “just like” their full term counterparts.
Both Grace and Meghan contend with the invisible scars left from prematurity. As their mommy, my job is to help them with learning coping strategies for their preemie battle scars.
Grace’s early birth brought on sensory processing disorder. While some of her sensory seeking behaviors may be very appropriate for her age group, Grace’s go further. How many six year olds do you know that actively still seek out exploring the world using their mouths? Poor dear husband, Charlie, was on the receiving end of a juicy lick to the upper arm the other day. She also is a bit like Dino from the Flintstones. When she runs up to you, she doesn’t slow on her approach. She comes on in ramming speed motion, and has knocked me over several different times. Then, there is the ever-so-fun need to approach you to say something, and then without warning, jump head first into your mother’s or father’s chin. Ouch!
Grace needs a very active sensory diet through which she can subdue her need to touch, feel, and experience things through her senses. My husband should have gotten the “husband of the year” award last year when he brought home a swing set complete with a slide. Grace needs to swing, run, jump, and play like an addict needs his/her next fix. This activity calms and soothes her brain’s needs for sensory input. Yes, I do know that this sounds like an average case of attention deficit disorder, but it is not. Grace can pay attention for hours if she wants.
Meghan’s early birth provided her with general low tone throughout her body. For many years, we were in the “watch and wait” dance to determine if Meghan had a mild case of cerebral palsy. The left side of her body actively “drooped” compared to her right side. Many, many sessions of physical therapy later, her strength has improved. Hallelujah! We were even told that the cerebral palsy issue was resolved. It is another reason for us to rejoice. In any case, I do pay homage to Grace’s contribution to Meghan’s low muscle tone and poor reflexes. Since Grace is so sensory seeking, Meghan now has lightning fast reflexes. She has to. Grace will literally bowl Meghan over otherwise.
Prematurity has consequences that can’t be erased or ignored. Many individuals do not understand this. Now that I’ve said this, I want to make it crystal clear that I do consider my children to be miracles, and I wouldn’t change them. They are my heart. They are my pride and joy. They have boundless love, and I return that to them everyday.
Yes, preemies are medical miracles, but you should not expect any preemie to come away from their early birth unscathed. Prematurity leaves battles scars. Some that can be seen, and many others that are unseen. My daughters have some physical scars, but the majority are unseen scars.
I’ll leave you with a final picture of my beauties.
Friday, May 02, 2008
Flashbacks
Four years ago, I was on full bedrest in our hospital's antepartum unit. It was day 8 of bedrest, and I had just passed my initial goal of making it to May 1st. We already had 2 April birthdays in our family, and I was hoping that there wouldn't be another arrival...an arrival way too soon for my liking.
My blood pressure was still climbing as severe preeclampsia was deepening its hold on me. I spent most of my time in a darkened room because I had had some uncontrolled twitching where my head jerked to my left side. My doctors didn't want me to have visitors except for my DH, and I couldn't have phone calls since the ringing would set me into twitching mode.
I was resolved to stick it out as long as I could, but I'll be honest. I was secretly hoping that the doctors would say, "it's time." It didn't happen that day 3 years ago, and yes, I did know that more time in utero is better. I knew that, but this was my 2nd horrible experience with severe preeclampisa. I was slowly losing my grip on my sanity as I stayed indoors in the dark, and this was day 8. My next goal was to make it to Cinco de Mayo, the 5th of May, and it looked like I might make it.
I had noticed that my baby was moving around less and less so I took it upon myself to poke him/her as much as I could to keep up the stimulation. This was beginning to bother me and the nurses were beginning to record decels on my non-stress tests and BPPs. My amniotic fluid was dropping off, and at the end of May 1st, 2004, I noticed that my vision was suddenly changing. Straight lines appeared squiggly to me, and I thought, "Oh no, it is happening again. This is what happened when I was pregnant with Gracie 2 years ago."
Gosh I was stressed out, but calm all at the same time. It was sort of a calm before the storm of Meghan's birth on May 3rd. Hind sight is always 20 20, but I hope that I did my best to take care of Miss Meghan that day.
My blood pressure was still climbing as severe preeclampsia was deepening its hold on me. I spent most of my time in a darkened room because I had had some uncontrolled twitching where my head jerked to my left side. My doctors didn't want me to have visitors except for my DH, and I couldn't have phone calls since the ringing would set me into twitching mode.
I was resolved to stick it out as long as I could, but I'll be honest. I was secretly hoping that the doctors would say, "it's time." It didn't happen that day 3 years ago, and yes, I did know that more time in utero is better. I knew that, but this was my 2nd horrible experience with severe preeclampisa. I was slowly losing my grip on my sanity as I stayed indoors in the dark, and this was day 8. My next goal was to make it to Cinco de Mayo, the 5th of May, and it looked like I might make it.
I had noticed that my baby was moving around less and less so I took it upon myself to poke him/her as much as I could to keep up the stimulation. This was beginning to bother me and the nurses were beginning to record decels on my non-stress tests and BPPs. My amniotic fluid was dropping off, and at the end of May 1st, 2004, I noticed that my vision was suddenly changing. Straight lines appeared squiggly to me, and I thought, "Oh no, it is happening again. This is what happened when I was pregnant with Gracie 2 years ago."
Gosh I was stressed out, but calm all at the same time. It was sort of a calm before the storm of Meghan's birth on May 3rd. Hind sight is always 20 20, but I hope that I did my best to take care of Miss Meghan that day.
Wednesday, April 23, 2008
March for Babies
Most of you are aware that both of our daughters, Grace and Meghan, were born prematurely. Gracie was our "biggest" baby born at 34 weeks weighing 3 pounds, 14.5 ounces. Meghan was our littlest peanut born at 27 weeks weighing in at 1 pound, 9.5 ounces. Severe preeclampsia caused their early births. Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.
The effects of prematurity last longer than past hospital discharge, and both of my daughters experience the under recognized side effects of prematurity every day. This Saturday, April 26, 2008, my husband, Charlie, and I will be proudly walking with our miracles in the March of Dimes March of Babies walk. I would be honored if you would consider a donation to our fundraising efforts. Thanks for your consideration. We appreciate it more than you could ever know.
Please help by donating today!
www.marchforbabies.org/alphagirls
The effects of prematurity last longer than past hospital discharge, and both of my daughters experience the under recognized side effects of prematurity every day. This Saturday, April 26, 2008, my husband, Charlie, and I will be proudly walking with our miracles in the March of Dimes March of Babies walk. I would be honored if you would consider a donation to our fundraising efforts. Thanks for your consideration. We appreciate it more than you could ever know.
Please help by donating today!
www.marchforbabies.org/alphagirls
Saturday, March 15, 2008
Cracked
Early last week, Grace approached me in our kitchen. She wore a red juice colored tatoo smile on her mouth. It was the kind that resulted because she tips the cup too quickly toward her mouth and the juice stains her upper lip in a joker-esque fashion. Upon looking closer into her eyes, I noticed she appeared concerned, and then she said, "My hands hurt Mama. They have scrapes on them."
"Let me see them."
Grace lifted both of her hands toward my mid-section and grimaced. As I inspected the skin on the back of both her hands, I had a hard time not making a "face" too. Her skin actually appeared sunburned throughout, but I knew better than that as we are in the vestiges of winter still. Across her knuckles were nearly 100 small cracks with startling similarity to paper cuts.
"Oh geez Gracie," I exhaled. "Have you been using lotion after you wash your hands?"
"Sometimes, Mama."
"You've got to use every time Gracie."
"I can't use it at school though."
"We can send some along with you in your backpack."
"Oh. Okay Mama."
"Let's go get some lotion now."
Gracie frowned, sighed knowingly, and asked a question to which she already knew the answer, "Will it hurt Mommy?"
"It may sting a bit, but we need to help your skin heal."
I didn't think much of that episode of cracked hands. I have very sensitive hands too.
***********************************************
A few days later, Grace began a familiar episode. These episodes come and go as most childhood phases do, but always give me a creeping sensation inside since they only seem to afflict Gracie. Meghan does not have an intense need to control most things around her.
Grace began kept telling us she had to use the bathroom. At first, I wondered if she had a bladder infection or something to that effect. There were little signs of something like an infection. Her proclaimations kept coming every 10 minutes or so, and she was able to hold it all night with no issues. Her hands weren't getting any better, though.
It was a mystery to me why she thought she had to go the bathroom so much. I even consulted a few friends to inquire if their children had gone through anything similiar.
Nope. None.
*******************************************
Here is an example of multitudes of interactions we've had in the last week:
"Mom, I have to pee sooooooo sooooooo bad!"
"Sorry honey. It hasn't even been an hour yet. You need to wait."
"But Mom!"
I cut her off, "No Grace. You certainly do not need to go to the bathroom yet."
*******************************************
On Friday, the girls and Charlie had a day off of school. While I was at work, I called Charlie. He and the girls were visiting our good friend, Tante, and her new baby, Hailey.
"Hi...How is Grace today? Is she asking to go to the bathroom a lot?"
Charlie responded, "All the time. I caught her going into the bathroom. She flushed the toilet without going, and just wants to wash her hands."
The realization flashed over me, but I asked the question anyway. "You mean like obsessively wanting to wash her hands?"
"Yes."
"Oh God. What should we do?"
"Jen, it is probably just a phase. We just need to help her correct her behavior."
"I know Charlie, but this reminds me of last year at Josh's wedding. It just worries me. I was a very stressed out kid when I was little, and I don't want her to feel like I did. I was so stressed that I scratched holes in my scalp in fourth grade." I flashed on a memory of my mom asking me what happened to my head as she was brushing my hair.
"This is probably just a phase Jen. Yes, this runs in your family, but this is probably just another phase."
"It still worries me though. I'd better get back to work now."
"All right. We'll talk to you later. Will you be home at regular time?"
"Yes. Bye."
*******************************************
When I got home later that day, I found a quiet time to ask Grace a few questions.
"Gracie, Daddy tells me that you want to wash your hands a lot. Why do you do that?"
"So I don't have germs on me."
That answer sounded like a standard repetition of the "right" answer in kindergarten, so I decided to take my questions in a sensory processing disorder direction. "Do you like how the water feels on your hands Gracie?"
"Yes. I like cold water on my hands."
"Is that because they sting right now?"
"Uh huh."
"Grace, would you rather have a ice pack for your hands? It would feel cold, but we would need to wrap it in a towel so it wouldn't freeze your skin."
"Okay Mommy."
"Are you worried about germs on your hands Gracie?"
"No." I flashed back to the lie I told my mom when she confronted me about the wounds on my scalp, but I reassured myself since I was older than Gracie when I lied to my mom.
"Are you sure Gracie?"
"Uh huh."
"Why do you wash you hands so much?"
"So I don't have germs, Mommy."
*******************************************
All of this is worrisome to me. Charlie feels behavior redirection should help her. It is hard for me not to reflect on my own childhood intense need to feel things. I didn't want to put holes into my scalp, but it felt like their were bumps on my head. I wanted the bumps gone. I scratched the bumps, which caused scabs, which led to me scratching the scabs off. It was a vicious cycle, and a hard habit to break then. Does Grace feel a strange sensation on her hands? Or is this simple compulsion?
Or am I just reading more into the situation? I have no idea, but I am glad to report that her hands are now on the road to healing. We've kept the bathroom visits to a minimum, which resulted in less hand washing and less chapped hands.
"Let me see them."
Grace lifted both of her hands toward my mid-section and grimaced. As I inspected the skin on the back of both her hands, I had a hard time not making a "face" too. Her skin actually appeared sunburned throughout, but I knew better than that as we are in the vestiges of winter still. Across her knuckles were nearly 100 small cracks with startling similarity to paper cuts.
"Oh geez Gracie," I exhaled. "Have you been using lotion after you wash your hands?"
"Sometimes, Mama."
"You've got to use every time Gracie."
"I can't use it at school though."
"We can send some along with you in your backpack."
"Oh. Okay Mama."
"Let's go get some lotion now."
Gracie frowned, sighed knowingly, and asked a question to which she already knew the answer, "Will it hurt Mommy?"
"It may sting a bit, but we need to help your skin heal."
I didn't think much of that episode of cracked hands. I have very sensitive hands too.
***********************************************
A few days later, Grace began a familiar episode. These episodes come and go as most childhood phases do, but always give me a creeping sensation inside since they only seem to afflict Gracie. Meghan does not have an intense need to control most things around her.
Grace began kept telling us she had to use the bathroom. At first, I wondered if she had a bladder infection or something to that effect. There were little signs of something like an infection. Her proclaimations kept coming every 10 minutes or so, and she was able to hold it all night with no issues. Her hands weren't getting any better, though.
It was a mystery to me why she thought she had to go the bathroom so much. I even consulted a few friends to inquire if their children had gone through anything similiar.
Nope. None.
*******************************************
Here is an example of multitudes of interactions we've had in the last week:
"Mom, I have to pee sooooooo sooooooo bad!"
"Sorry honey. It hasn't even been an hour yet. You need to wait."
"But Mom!"
I cut her off, "No Grace. You certainly do not need to go to the bathroom yet."
*******************************************
On Friday, the girls and Charlie had a day off of school. While I was at work, I called Charlie. He and the girls were visiting our good friend, Tante, and her new baby, Hailey.
"Hi...How is Grace today? Is she asking to go to the bathroom a lot?"
Charlie responded, "All the time. I caught her going into the bathroom. She flushed the toilet without going, and just wants to wash her hands."
The realization flashed over me, but I asked the question anyway. "You mean like obsessively wanting to wash her hands?"
"Yes."
"Oh God. What should we do?"
"Jen, it is probably just a phase. We just need to help her correct her behavior."
"I know Charlie, but this reminds me of last year at Josh's wedding. It just worries me. I was a very stressed out kid when I was little, and I don't want her to feel like I did. I was so stressed that I scratched holes in my scalp in fourth grade." I flashed on a memory of my mom asking me what happened to my head as she was brushing my hair.
"This is probably just a phase Jen. Yes, this runs in your family, but this is probably just another phase."
"It still worries me though. I'd better get back to work now."
"All right. We'll talk to you later. Will you be home at regular time?"
"Yes. Bye."
*******************************************
When I got home later that day, I found a quiet time to ask Grace a few questions.
"Gracie, Daddy tells me that you want to wash your hands a lot. Why do you do that?"
"So I don't have germs on me."
That answer sounded like a standard repetition of the "right" answer in kindergarten, so I decided to take my questions in a sensory processing disorder direction. "Do you like how the water feels on your hands Gracie?"
"Yes. I like cold water on my hands."
"Is that because they sting right now?"
"Uh huh."
"Grace, would you rather have a ice pack for your hands? It would feel cold, but we would need to wrap it in a towel so it wouldn't freeze your skin."
"Okay Mommy."
"Are you worried about germs on your hands Gracie?"
"No." I flashed back to the lie I told my mom when she confronted me about the wounds on my scalp, but I reassured myself since I was older than Gracie when I lied to my mom.
"Are you sure Gracie?"
"Uh huh."
"Why do you wash you hands so much?"
"So I don't have germs, Mommy."
*******************************************
All of this is worrisome to me. Charlie feels behavior redirection should help her. It is hard for me not to reflect on my own childhood intense need to feel things. I didn't want to put holes into my scalp, but it felt like their were bumps on my head. I wanted the bumps gone. I scratched the bumps, which caused scabs, which led to me scratching the scabs off. It was a vicious cycle, and a hard habit to break then. Does Grace feel a strange sensation on her hands? Or is this simple compulsion?
Or am I just reading more into the situation? I have no idea, but I am glad to report that her hands are now on the road to healing. We've kept the bathroom visits to a minimum, which resulted in less hand washing and less chapped hands.
Saturday, March 01, 2008
Enrichment
In our family, we often laugh and say that our children have acquired the “B” family music gene. Music was also incredibly important in my mother’s family. In all seriousness, Kesa is incredibly gifted with musical talent. She plays clarinet, saxophone, flute, and a little piano. She is a self-proclaimed “band geek.”
From the time Grace began to hum and sing along to her favorite children’s music, she was always on key. To me this was amazing since most toddlers like to sing but need a little help finding the right key in which to sing. Meghan has followed suit, and as I’ve said before, she sings and hums nearly 60% of her days.
I wholeheartedly believe that all of our girls have a natural inclination toward musical talent, and Grace and Meghan often imagine which instruments they would like to learn as they grow up. Music enriches their lives and plays to their souls.
**********
In our family, we also laugh that our children, except for Kesa, are not naturally inclined towards being physically active. Grace’s name is actually a misnomer. She does not have natural grace. She falls into the clumsy, awkward category of children. Grace also suffers from sensory issues, and we’ve found that spinning, jumping, and swinging are calming for her. In the warm months, Grace’s daily routine is to swing. She pumps her legs with glee to go higher and higher. Gracie needs activity as part of her sensory diet. It tames Grace’s internal disorganization, and reminds her body that it does have balance and grace.
Meghan likely would have been a naturally agile girl, but her micropreemie beginning set up an unnatural low tone, low strength situation. When she was a baby and unable to move very well, it became apparent that her spirit was trapped inside her body. The look in her eyes revealed the situation. She yearned to get free of the confines of her weakened state. For a long time, she received physical therapy to strengthen her body, especially her left side. She succeeded in breaking free for the most part, but her spry spirit is often tamed by her weaker physical body. Meghan needs activity to free her spirit.
**********
So why am I speaking to our childrens’ musical and physical abilities?
Last week, we found out that their school has decided to eliminate both the music and physical education teachers for the next school year. I don’t understand the decision, and as I’ve documented above, this will directly affect my daughters’ lives. A PTA meeting is scheduled for Tuesday, and Charlie and I will be there.
From the time Grace began to hum and sing along to her favorite children’s music, she was always on key. To me this was amazing since most toddlers like to sing but need a little help finding the right key in which to sing. Meghan has followed suit, and as I’ve said before, she sings and hums nearly 60% of her days.
I wholeheartedly believe that all of our girls have a natural inclination toward musical talent, and Grace and Meghan often imagine which instruments they would like to learn as they grow up. Music enriches their lives and plays to their souls.
**********
In our family, we also laugh that our children, except for Kesa, are not naturally inclined towards being physically active. Grace’s name is actually a misnomer. She does not have natural grace. She falls into the clumsy, awkward category of children. Grace also suffers from sensory issues, and we’ve found that spinning, jumping, and swinging are calming for her. In the warm months, Grace’s daily routine is to swing. She pumps her legs with glee to go higher and higher. Gracie needs activity as part of her sensory diet. It tames Grace’s internal disorganization, and reminds her body that it does have balance and grace.
Meghan likely would have been a naturally agile girl, but her micropreemie beginning set up an unnatural low tone, low strength situation. When she was a baby and unable to move very well, it became apparent that her spirit was trapped inside her body. The look in her eyes revealed the situation. She yearned to get free of the confines of her weakened state. For a long time, she received physical therapy to strengthen her body, especially her left side. She succeeded in breaking free for the most part, but her spry spirit is often tamed by her weaker physical body. Meghan needs activity to free her spirit.
**********
So why am I speaking to our childrens’ musical and physical abilities?
Last week, we found out that their school has decided to eliminate both the music and physical education teachers for the next school year. I don’t understand the decision, and as I’ve documented above, this will directly affect my daughters’ lives. A PTA meeting is scheduled for Tuesday, and Charlie and I will be there.
Wednesday, December 26, 2007
Cough, Cough, Cough
As I write this, Meghan is gleefully playing inside our brand new, Santa delivered Disney Princess play hut tent. As she does every day, Meghan is humming her way through her imaginary world of the kitty vets office. Her newest family pet is a Fur Real Friend orange and white kitty. Grace's kitty is also visiting the vets office.
While I'm thoroughly enjoying the sounds of the girls playing together even if there is the occasional whining and whimpering, I don't like one sound I'm hearing over and over again. It is the sound of Meghan's cough, which resembles the sound that a curdled jug of milk might make if you shook it. The "chunk, chunk, chunk, gag, gag, gag" sounds are driving this Alpha mom a little bit crazy.
Once again, I'm standing here wondering how much damage Meghan's former micro-preemie and Alpha-1 deficient lungs are sustaining. Will it be 1% lung function or 2%? Or none? Who knows? Sheesh! I'm hoping and praying that the denial fairy will grace my presence, but today, she isn't coming.
Zithromax is currently battling it out with Meghan's bronchitis infection, and this mommy is willing it to win, win, win quickly.
Hopefully Meghan's health will improve in the new year, but I do know one thing. My Alpha girls are blessed even with their former preemie and Alpha-1 status. We are blessed today, and that is what I need to focus on.
While I'm thoroughly enjoying the sounds of the girls playing together even if there is the occasional whining and whimpering, I don't like one sound I'm hearing over and over again. It is the sound of Meghan's cough, which resembles the sound that a curdled jug of milk might make if you shook it. The "chunk, chunk, chunk, gag, gag, gag" sounds are driving this Alpha mom a little bit crazy.
Once again, I'm standing here wondering how much damage Meghan's former micro-preemie and Alpha-1 deficient lungs are sustaining. Will it be 1% lung function or 2%? Or none? Who knows? Sheesh! I'm hoping and praying that the denial fairy will grace my presence, but today, she isn't coming.
Zithromax is currently battling it out with Meghan's bronchitis infection, and this mommy is willing it to win, win, win quickly.
Hopefully Meghan's health will improve in the new year, but I do know one thing. My Alpha girls are blessed even with their former preemie and Alpha-1 status. We are blessed today, and that is what I need to focus on.
Wednesday, December 12, 2007
NICU Reunion
I grabbed the handle of a large metal door which allowed entry into the hospital. I swung it open, and Grace and Meghan ran through it. The familiar pattern of the carpet appeared. Sage green and lavender geometric shapes splattered across the hallway floor, and a large sign read Neonatal Intensive Care Unit. Tan handrails lined the skywalk that led toward the NICU.
Ahead of me, Grace ran her hand along the handrail as she skipped along in her shiny patent leather shoes with a 1/2 inch heel. Her sensory need to touch and feel her way through life is evident everyday. She turned her head around toward me and said, "This feels silky smooth, Mommy."
"Yes Grace," I said as I wondered just how many germs she was picking up on her right hand.
"It feels cold, too."
Meghan's right hand was in my left hand, and as we walked along the skywalk, her grip became increasingly tighter. The blood was leaving my index finger so I jiggled her hand a bit to encourage her to release her grip. She relaxed her hand as she said, "I was born here Mommy."
"Yes, Meghan. You were my littlest baby girl Meggie. You lived here for 79 days, and then you came to our house. It made me so happy when you came home."
Grace inquired, "Mommy, how long did I live here?"
"You stayed here 23 days Gracie."
"How much did I weigh Mommy?"
"3 pounds, 14.5 ounces."
"I was bigger than Meghan. Right Mommy?"
"Yes, Grace. You were bigger than Meghan, but you were still small when you were born. Mommy and Daddy were so worried about you when you were born. Meghan, too. The doctors and nurses here took great care of you, and showed Mommy and Daddy how to take care of you too."
We were on our way to the annual Holiday Party NICU reunion. The girls were excited because I finally let them put their Christmas dresses on. Hunter green velvet adorned their small frames, and red, green, and silver bells jingled in their blonde hair. Earlier when I put Meghan's dress on, she twirled and said, "My pretty dress helps me dance good."
The skywalk smelled like the pages of an old, faded book. It had smelled that way since it was built 4 years ago. I don't know why but that smell brought back a memory I hadn't recalled in quite some time. With Gracie still skipping along and Meghan still squeezing my index finger too tightly, I was suddenly flashing back to that skywalk about 3 weeks after Meghan was born. She was still quite fragile then, and was struggling with her H&H (hemoglobin and hematocrit). In the few days before then, her H&H values were plunging. I had studied the values in her chart, but didn't quite understand them except that the values read LOW.
When I had walked into the NICU that day, Meghan's primary nurse, Kim, greeted me with a sullen look just outside the door of Meghan's room. I flashed her a nervous smile because I didn't want to acknowledge the clear look of concern on her face. She stuttered and blurted out in one long breath, "Uh, you can't do kangaroo this morning. She isn't stable enough. Her H&H fell overnight, and we're transfusing her right now. I still don't like her color, I've turned down the lights, and asked visitors to keep it down. She is really in dangerous territory right now. I really pushed her when I had to find a vessel for the transfusion. She was really mad at me. I blew a vein in her arm so now we're using a vein in her skull. You can sit next to her, but please don't touch her or the tubing on top of the isolette."
She walked me to the isolette, and said, "Here is a chair." Then, she pointed to the bag of blood, and said, "Leave that alone please. Now, sit and let's hope she pinks up with some of this blood."
Panic and fear was welling up inside of me, but I managed to blurt out, "I'll do anything she needs right now. Kangaroo care is the furthest thing on my mind right now. What blood type is this blood?"
"It is O neg. We like to use that type in the NICU to reduce transfusion issues." Why I wanted to know that is not clear to me even now. I also wondered inside what Kim meant by transfusion issues, but my eyes had fallen onto Meghan's shadowy figure inside the isolette. A ventilator was pumping air into her prematurely abused lungs, her foot glowed orange from a pulse oximeter, a temperature probe was stuck to her chest with a shining gold sticker in the shape of a teddy bear, and a thin tube of maroon colored blood was flowing into a venous catheter in Meghan's skull.
"Oh my, my, my God. She is so pale. Thank God for blood donors." I stuttered.
Kim joked a bit with me and said, "Hey, maybe she has your color?"
"Uh yeah, maybe. I know I have red-headed pale skin, but I don't look like death. She does."
"Let's see what happens, and Dr. R will be here soon. I called him. You might want to call your husband."
"Oh." I knew it was bad, but it was all so surreal. I wanted to cry, but it wouldn't come. I just sat there willing Meghan to live with every bit of my being. I kept thanking God for that blood donor, and asking God to help Meghan. Over and over again, I prayed. Meghan hadn't been baptized yet so I held my right hand out, made a sign of a cross with my hand in the air, and quietly said, "I baptize you in the name of the father, the son, and the Holy Spirit." Tears pooled in my eye lids as I thought I didn't want her to die without being baptized, even a baptism by me was better than nothing.
Eventually, the donor's blood began to bring the color back into Meghan's tiny little being. It was the longest five minutes of my life as I experienced it in a kind of slow motion sequence. My eyes wouldn't blink. I don't recall hearing much after I sat down next to her isolette, and it seemed darker than usual. I didn't want to leave her, not even to call Charlie. I wasn't sure she'd still be alive if I left to call him.
A few minutes later, Kim looked at her vital signs, and said, "I think this is helping. She is doing better right now. Let's let her sleep. Sleep helps."
I thought, "Oh thank God." I began to shiver a bit from the adrenaline.
I glanced back at Meghan, and she seemed very peaceful. A calm came over me, and I had a sudden urge to call Charlie. I quickly left for the family room where the phone was. I don't remember what I said to him, but after talking to him, I found myself on that skywalk to the NICU.
Sunlight was gleaming through the windows. Children were playing on the playground at the school across the street, and I sat down on the green and purple carpet about 1/4 of the way down the hall. I thanked God a few more times, and made a "bee line" back to the NICU to sit next to Meghan. I had nearly lost her. We had nearly lost her. God intervened. A blood donor brought life back to my precious baby as I stood their observing. Amazing. Simply amazing.
The jingling of the bells on Grace's head brought me back into reality. We had reached the waiting area outside the NICU. The party was already in progress, and both my girls were very much alive. They bounced, skipped, wiggled, and jiggled their way through the party.
Neither one wanted to sit on Santa's lap nor tell him what they wanted for Christmas. I didn't care though. They were not guaranteed children. The NICU staff worked hard to save their lives so that they could have lives. Even if that means, the girls act up, misbehave, or allow their sensory issues to overtake what is consider normal childhood behavior. They live, and I live through them. We live through them. We live for them. I live for them.
Submitted for the Gift of Every Moment at Wrapped Emotions:
Ahead of me, Grace ran her hand along the handrail as she skipped along in her shiny patent leather shoes with a 1/2 inch heel. Her sensory need to touch and feel her way through life is evident everyday. She turned her head around toward me and said, "This feels silky smooth, Mommy."
"Yes Grace," I said as I wondered just how many germs she was picking up on her right hand.
"It feels cold, too."
Meghan's right hand was in my left hand, and as we walked along the skywalk, her grip became increasingly tighter. The blood was leaving my index finger so I jiggled her hand a bit to encourage her to release her grip. She relaxed her hand as she said, "I was born here Mommy."
"Yes, Meghan. You were my littlest baby girl Meggie. You lived here for 79 days, and then you came to our house. It made me so happy when you came home."
Grace inquired, "Mommy, how long did I live here?"
"You stayed here 23 days Gracie."
"How much did I weigh Mommy?"
"3 pounds, 14.5 ounces."
"I was bigger than Meghan. Right Mommy?"
"Yes, Grace. You were bigger than Meghan, but you were still small when you were born. Mommy and Daddy were so worried about you when you were born. Meghan, too. The doctors and nurses here took great care of you, and showed Mommy and Daddy how to take care of you too."
We were on our way to the annual Holiday Party NICU reunion. The girls were excited because I finally let them put their Christmas dresses on. Hunter green velvet adorned their small frames, and red, green, and silver bells jingled in their blonde hair. Earlier when I put Meghan's dress on, she twirled and said, "My pretty dress helps me dance good."
The skywalk smelled like the pages of an old, faded book. It had smelled that way since it was built 4 years ago. I don't know why but that smell brought back a memory I hadn't recalled in quite some time. With Gracie still skipping along and Meghan still squeezing my index finger too tightly, I was suddenly flashing back to that skywalk about 3 weeks after Meghan was born. She was still quite fragile then, and was struggling with her H&H (hemoglobin and hematocrit). In the few days before then, her H&H values were plunging. I had studied the values in her chart, but didn't quite understand them except that the values read LOW.
When I had walked into the NICU that day, Meghan's primary nurse, Kim, greeted me with a sullen look just outside the door of Meghan's room. I flashed her a nervous smile because I didn't want to acknowledge the clear look of concern on her face. She stuttered and blurted out in one long breath, "Uh, you can't do kangaroo this morning. She isn't stable enough. Her H&H fell overnight, and we're transfusing her right now. I still don't like her color, I've turned down the lights, and asked visitors to keep it down. She is really in dangerous territory right now. I really pushed her when I had to find a vessel for the transfusion. She was really mad at me. I blew a vein in her arm so now we're using a vein in her skull. You can sit next to her, but please don't touch her or the tubing on top of the isolette."
She walked me to the isolette, and said, "Here is a chair." Then, she pointed to the bag of blood, and said, "Leave that alone please. Now, sit and let's hope she pinks up with some of this blood."
Panic and fear was welling up inside of me, but I managed to blurt out, "I'll do anything she needs right now. Kangaroo care is the furthest thing on my mind right now. What blood type is this blood?"
"It is O neg. We like to use that type in the NICU to reduce transfusion issues." Why I wanted to know that is not clear to me even now. I also wondered inside what Kim meant by transfusion issues, but my eyes had fallen onto Meghan's shadowy figure inside the isolette. A ventilator was pumping air into her prematurely abused lungs, her foot glowed orange from a pulse oximeter, a temperature probe was stuck to her chest with a shining gold sticker in the shape of a teddy bear, and a thin tube of maroon colored blood was flowing into a venous catheter in Meghan's skull.
"Oh my, my, my God. She is so pale. Thank God for blood donors." I stuttered.
Kim joked a bit with me and said, "Hey, maybe she has your color?"
"Uh yeah, maybe. I know I have red-headed pale skin, but I don't look like death. She does."
"Let's see what happens, and Dr. R will be here soon. I called him. You might want to call your husband."
"Oh." I knew it was bad, but it was all so surreal. I wanted to cry, but it wouldn't come. I just sat there willing Meghan to live with every bit of my being. I kept thanking God for that blood donor, and asking God to help Meghan. Over and over again, I prayed. Meghan hadn't been baptized yet so I held my right hand out, made a sign of a cross with my hand in the air, and quietly said, "I baptize you in the name of the father, the son, and the Holy Spirit." Tears pooled in my eye lids as I thought I didn't want her to die without being baptized, even a baptism by me was better than nothing.
Eventually, the donor's blood began to bring the color back into Meghan's tiny little being. It was the longest five minutes of my life as I experienced it in a kind of slow motion sequence. My eyes wouldn't blink. I don't recall hearing much after I sat down next to her isolette, and it seemed darker than usual. I didn't want to leave her, not even to call Charlie. I wasn't sure she'd still be alive if I left to call him.
A few minutes later, Kim looked at her vital signs, and said, "I think this is helping. She is doing better right now. Let's let her sleep. Sleep helps."
I thought, "Oh thank God." I began to shiver a bit from the adrenaline.
I glanced back at Meghan, and she seemed very peaceful. A calm came over me, and I had a sudden urge to call Charlie. I quickly left for the family room where the phone was. I don't remember what I said to him, but after talking to him, I found myself on that skywalk to the NICU.
Sunlight was gleaming through the windows. Children were playing on the playground at the school across the street, and I sat down on the green and purple carpet about 1/4 of the way down the hall. I thanked God a few more times, and made a "bee line" back to the NICU to sit next to Meghan. I had nearly lost her. We had nearly lost her. God intervened. A blood donor brought life back to my precious baby as I stood their observing. Amazing. Simply amazing.
The jingling of the bells on Grace's head brought me back into reality. We had reached the waiting area outside the NICU. The party was already in progress, and both my girls were very much alive. They bounced, skipped, wiggled, and jiggled their way through the party.
Neither one wanted to sit on Santa's lap nor tell him what they wanted for Christmas. I didn't care though. They were not guaranteed children. The NICU staff worked hard to save their lives so that they could have lives. Even if that means, the girls act up, misbehave, or allow their sensory issues to overtake what is consider normal childhood behavior. They live, and I live through them. We live through them. We live for them. I live for them.
Submitted for the Gift of Every Moment at Wrapped Emotions:
Sunday, December 09, 2007
Blessings
I scooped Meghan up in my arms. She was bundled up in her hot pink winter coat with accompanying pink fleece hat with an adorning white and pink pom-pon a top the hat. As her dress shifted upward, she wiggled and readjusted herself a bit as I took each step down the snow covered front path of my home. Her shiny black patent leather shoes hit my left thigh with each step. I wondered if stains were forming as I made may way to the waiting mini-van. Grace tip-toed her way along ahead of me in her "high heel" shoes, which she adores.
As I inhaled, the wintery air startled me. The temperature had dipped below 20 degrees, and a fresh layer of fluffy snow was under my feet.
"Gracie, please be careful. It is slippery today."
"Mommy, what is that stuff again?"
As I huffed along, I answered, "What stuff Grace?"
"The salt stuff mommy. Can we eat it?"
As the salt crunched under my shoes, I answered, "No, it isn't the eating kind of salt Gracie. That salt is much smaller. This salt melts the ice."
As we approached the mini-van, Charlie opened the side door for us. We got in and drove away toward church. As we drove along, Meghan gleefully cheered. "I'm singin' in choich (church) today!"
"Really Meghan?" I responded to play along.
"Yep! I'm gonna sing Jesus, Name Above All Games."
"Oh wow, you're going to make me so proud. Meghan, are you sure the song isn't called really Jesus, Name Above All Names?"
"Nut uh Mommy! Jesus, Name Above All GAMES! Miss Amy told me," she replied emphatically.
"Okay."
We made it to church on time, and the girls sprinted down the main isle like it was Disney World. "Slow down please!" I pleaded. We took a seat about three rows from the front of the church. As is the usual case, all of the rows in front of us were empty. I thought, "Great! We can easily take a video of Meghan from here."
The service trudged along like our feet on the slippery sidewalk. Meghan and Grace wiggled, squirmed, and jiggled their way through the service. Although, I was quite proud that they were both using their "wisper" voices. Finally, it was time for Meghan to sing with her class.
"It's time for you to sing Meghan."
"Yay!" She wiggled past Charlie's knees out of the pew, and ran up to the front of the church. She found a spot next to Caden, but then Miss Amy moved her down to the front row next to Jason.
As they began to sing, tears formed in my eyes. I was overcome with pride for her as she was singing. I couldn't believe that she was up there singing all of the words one-by-large-one.
Jesus * Name Above All Names
Beautiful Savior * Glorious Lord
Emmanuel * God is With Us
Blessed Redeemer * Living Word
There she was among her friends.
There she stood, singing with her whole heart.
Our beautiful living miracle.
Who came into the world into the hands of a surgeon sounding like a mewing kitten.
Who once was a fragile frail skinned micropreemie.
Who couldn't keep her body temperature warm.
Who would forget to breathe.
Who's heart would skip beats.
Who couldn't make enough parts of her blood to stay alive.
Who was transfused three times by a very generous blood donor.
Who turned ashen blue several scary times.
Who scared her Daddy badly when he came to visit her in the NICU as they were bagging her.
Who would cough and sputter as she learned how to suck the milk from a bottle.
Who lay scarily, completely still in her bassinet as a sleep apnea alarm blared next to her.
Who eventually did well enough to leave the NICU after 79 long, long days.
Who ended up in speech, occupational, and physical therapy.
Who trudges along every day like she is queen of the world.
Who taught me that miracles can come in tiny packages.
There she was in all her glory. Singing some very big words making her Mommy tear up with joy. She is a living breathing gift from God, and today, she prooved to me yet again that she was worth every scary step of the way.
She made us all proud, but it made me tear up a little more when Gracie said, "She is singing so pretty Mommy."
"Yes Grace. Meggie is such a big girl now, isn't she?"
Submitted to Wrapped Emotions for The Gift of Everyday
As I inhaled, the wintery air startled me. The temperature had dipped below 20 degrees, and a fresh layer of fluffy snow was under my feet.
"Gracie, please be careful. It is slippery today."
"Mommy, what is that stuff again?"
As I huffed along, I answered, "What stuff Grace?"
"The salt stuff mommy. Can we eat it?"
As the salt crunched under my shoes, I answered, "No, it isn't the eating kind of salt Gracie. That salt is much smaller. This salt melts the ice."
As we approached the mini-van, Charlie opened the side door for us. We got in and drove away toward church. As we drove along, Meghan gleefully cheered. "I'm singin' in choich (church) today!"
"Really Meghan?" I responded to play along.
"Yep! I'm gonna sing Jesus, Name Above All Games."
"Oh wow, you're going to make me so proud. Meghan, are you sure the song isn't called really Jesus, Name Above All Names?"
"Nut uh Mommy! Jesus, Name Above All GAMES! Miss Amy told me," she replied emphatically.
"Okay."
We made it to church on time, and the girls sprinted down the main isle like it was Disney World. "Slow down please!" I pleaded. We took a seat about three rows from the front of the church. As is the usual case, all of the rows in front of us were empty. I thought, "Great! We can easily take a video of Meghan from here."
The service trudged along like our feet on the slippery sidewalk. Meghan and Grace wiggled, squirmed, and jiggled their way through the service. Although, I was quite proud that they were both using their "wisper" voices. Finally, it was time for Meghan to sing with her class.
"It's time for you to sing Meghan."
"Yay!" She wiggled past Charlie's knees out of the pew, and ran up to the front of the church. She found a spot next to Caden, but then Miss Amy moved her down to the front row next to Jason.
As they began to sing, tears formed in my eyes. I was overcome with pride for her as she was singing. I couldn't believe that she was up there singing all of the words one-by-large-one.
Jesus * Name Above All Names
Beautiful Savior * Glorious Lord
Emmanuel * God is With Us
Blessed Redeemer * Living Word
There she was among her friends.
There she stood, singing with her whole heart.
Our beautiful living miracle.
Who came into the world into the hands of a surgeon sounding like a mewing kitten.
Who once was a fragile frail skinned micropreemie.
Who couldn't keep her body temperature warm.
Who would forget to breathe.
Who's heart would skip beats.
Who couldn't make enough parts of her blood to stay alive.
Who was transfused three times by a very generous blood donor.
Who turned ashen blue several scary times.
Who scared her Daddy badly when he came to visit her in the NICU as they were bagging her.
Who would cough and sputter as she learned how to suck the milk from a bottle.
Who lay scarily, completely still in her bassinet as a sleep apnea alarm blared next to her.
Who eventually did well enough to leave the NICU after 79 long, long days.
Who ended up in speech, occupational, and physical therapy.
Who trudges along every day like she is queen of the world.
Who taught me that miracles can come in tiny packages.
There she was in all her glory. Singing some very big words making her Mommy tear up with joy. She is a living breathing gift from God, and today, she prooved to me yet again that she was worth every scary step of the way.
She made us all proud, but it made me tear up a little more when Gracie said, "She is singing so pretty Mommy."
"Yes Grace. Meggie is such a big girl now, isn't she?"
Submitted to Wrapped Emotions for The Gift of Everyday
Tuesday, November 13, 2007
Prematurity Awareness Month
November is Prematurity Awareness Month.
A little more than 5 years ago, I learned that my first baby would be born too soon at 34 weeks gestation. My precious cargo, Grace Ann, had to be born early because of my preeclampsia. She was my biggest baby weighing in at 3 pounds, 14.5 ounces, and 17 1/2 inches long. She had difficulty breathing, eating, and growing. To this day, Grace still deals with issues related to her prematurity, but nonetheless is doing well overall in kindergarten. Can she really be 5 already? Wow! I'm eternally grateful for Grace and the wonderful neonatal care she received.
A little more than 3 years ago, I learned that my second baby would be born extremely too early at 27 weeks gestation. My tiny peanut, Meghan Rose, was born because I developed preeclampisa yet again. She was unbelievably small to me weighing in at just 725 grams, aka 1 pound, 9.5 ounces, and 13 inches long. She was called a micropreemie, and proved herself to be a fighter every scary step of the way. Today, she still contends with issues related to her prematurity, too. We're happy she is growing, albeit ever so slowly, but she is happy and quite the character. Way to grow Meggie. :)
Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.
In tribute to the miracle baby survivors of preeclampsia, please consider donating to the March of Dimes. I would be so proud if you could. Grace & Meghan thank you too.
Jen, mom of Grace & Meghan
Tuesday, October 23, 2007
Owie, It Hurts
When Gracie was a baby in the NICU, she had several leads on her chest to monitor various vital signs and such. I remember the circular stickers that attached the leads to Grace covered nearly all of her chest. I have a vivid memory of watching her tiny 3 pound body breathe in and out. Her retractions made me very nervous. I kept willing her to calm the rapidity of her breaths. My telepathic notions didn't work, but some time and patience did.
Preemie skin is often frail, and the NICU used something they called "second skin" to help protect Grace's skin from sores while in their care. Grace only ended up with one tiny scar on her collar bone. It is pea-sized and slightly raised. Recently, Grace asked me what the bump was on her chest. I told her how it got there, and she said, "I like to touch it."
Grace often gets obsessed with the textures of things, which I think is tied into her sensory issues. From the time she was an infant, she was obsessed with touching both of her ears. Whe she was a baby, she'd even grab her ears while we were feeding her. Grace's need to touch and hold and carress things is sometimes very profound.
A few days ago, I was helping her put a shirt on before school, and I noticed the scar was red and angry looking. I instructed her to stop touching the bump, and she seemed to understand. I even thought that maybe she had received a bug bite or something like that.
Today, when she woke up the pea-sized bump had morphed into a 50-cent piece sized infection. The color of it was now redish purple, and a halo of inflamation was surrounding the bump.
So, today we went to the pediatrician. He isn't sure what the bump is except that he thinks it is some sort of boil. By touching the scar so much she may have accidentally introduced a staph or strep infection into the area. I also asked the doctor if it was possibly something called panniculitis, which can afflict people who have Alpha-1 Antitrypsin Deficiency. He said he wasn't sure but that he'd check into it. My gut feeling is that she has an old fashioned boil.
We're trying a broad spectrum antibiotic to see if that will help. I'm also supposed to apply warm compresses, and put Neosporin on the bump. Grace acts like I'm electrocuting her when I get near the bump though. It must really hurt her.
I hope the medication helps and that Grace's former scar doesn't become larger. Isn't it interesting how her early beginning in life keeps coming back to haunt her?
Preemie skin is often frail, and the NICU used something they called "second skin" to help protect Grace's skin from sores while in their care. Grace only ended up with one tiny scar on her collar bone. It is pea-sized and slightly raised. Recently, Grace asked me what the bump was on her chest. I told her how it got there, and she said, "I like to touch it."
Grace often gets obsessed with the textures of things, which I think is tied into her sensory issues. From the time she was an infant, she was obsessed with touching both of her ears. Whe she was a baby, she'd even grab her ears while we were feeding her. Grace's need to touch and hold and carress things is sometimes very profound.
A few days ago, I was helping her put a shirt on before school, and I noticed the scar was red and angry looking. I instructed her to stop touching the bump, and she seemed to understand. I even thought that maybe she had received a bug bite or something like that.
Today, when she woke up the pea-sized bump had morphed into a 50-cent piece sized infection. The color of it was now redish purple, and a halo of inflamation was surrounding the bump.
So, today we went to the pediatrician. He isn't sure what the bump is except that he thinks it is some sort of boil. By touching the scar so much she may have accidentally introduced a staph or strep infection into the area. I also asked the doctor if it was possibly something called panniculitis, which can afflict people who have Alpha-1 Antitrypsin Deficiency. He said he wasn't sure but that he'd check into it. My gut feeling is that she has an old fashioned boil.
We're trying a broad spectrum antibiotic to see if that will help. I'm also supposed to apply warm compresses, and put Neosporin on the bump. Grace acts like I'm electrocuting her when I get near the bump though. It must really hurt her.
I hope the medication helps and that Grace's former scar doesn't become larger. Isn't it interesting how her early beginning in life keeps coming back to haunt her?
Wednesday, October 17, 2007
Mama So Proud
Today, Meghan had her first trip to the pumpkin farm. I've missed virtually all of Meghan's "firsts" throughout her life for various reasons, but this one, I could control. I could be there.
While carting two of Meghan's preschool friends and her teacher, Miss Amy, I struck up a conversation with Miss Amy. I was interested in hearing how she thought Meghan was doing in K3. I've always wondered if Meghan would need to be "held back" an extra year before starting K4. With her micropreemie start in life, I wondered if she'd need extra time to mature and learn before competing with her peers in school. I very vividly recall a conversation I had with her neonatologist while she was still incubating. He had indicated Meghan would be high risk for learning problems and attention deficit disorder.
I'm happy to report that Miss Amy doesn't see any lagging or delays in Meghan's abilities when compared with her peers. This makes my heart warm today! :)
The pumpkin farm was great too, but somehow this spur of the moment conversation helped me breathe a large sigh of relief for now. Meghan is still at risk for learning problems based on her micropreemie birth, but for now, she seems to be beating some of those odds. Who knows? Maybe K4 isn't as far away at it seemed yesterday?
*********************************************************************
Yesterday, Grace's class visited an apple orchard and pumpkin farm, too. I chaperoned and rode the bus with her there. She had fun sitting next to Dylan and pretty much ignored me all the way there. It is good to see her social skills are exploding now. Whew!
Tonight, we had Grace's parent/teacher conference. Last year, Grace did well, but this year she is going great according to her teacher. Teacher said "Grace is in the top of the class." Wow! Wahoo! Yeehaw!
It was a "mama so proud" day! I'm sure it was a "daddy so proud day" too.
While carting two of Meghan's preschool friends and her teacher, Miss Amy, I struck up a conversation with Miss Amy. I was interested in hearing how she thought Meghan was doing in K3. I've always wondered if Meghan would need to be "held back" an extra year before starting K4. With her micropreemie start in life, I wondered if she'd need extra time to mature and learn before competing with her peers in school. I very vividly recall a conversation I had with her neonatologist while she was still incubating. He had indicated Meghan would be high risk for learning problems and attention deficit disorder.
I'm happy to report that Miss Amy doesn't see any lagging or delays in Meghan's abilities when compared with her peers. This makes my heart warm today! :)
The pumpkin farm was great too, but somehow this spur of the moment conversation helped me breathe a large sigh of relief for now. Meghan is still at risk for learning problems based on her micropreemie birth, but for now, she seems to be beating some of those odds. Who knows? Maybe K4 isn't as far away at it seemed yesterday?
*********************************************************************
Yesterday, Grace's class visited an apple orchard and pumpkin farm, too. I chaperoned and rode the bus with her there. She had fun sitting next to Dylan and pretty much ignored me all the way there. It is good to see her social skills are exploding now. Whew!
Tonight, we had Grace's parent/teacher conference. Last year, Grace did well, but this year she is going great according to her teacher. Teacher said "Grace is in the top of the class." Wow! Wahoo! Yeehaw!
It was a "mama so proud" day! I'm sure it was a "daddy so proud day" too.
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