I'm a Chef.
I don't work as one anymore; I stopped soon after Amelia was born. I generally worked in high end restaurants or clubs, or funky little places with fresh, fun food and live music. I've even worked for a large church around the time Amelia was born cooking meals for their daycare (over 100 kids) and their Wednesday/Friday night meals.
Since she's been born, I've hosted cooking with kids playdates, cooking classes with friends and fun meals in general. Best of all, I cook with my daughter (who turned 4 in June) almost every day in some way. I love being in the kitchen with her; she loves smelling, touching and tasting food. Grocery trips with her are a delight. Cooking as a family and home cooked meals every night sitting aroung the table is a given. Extended members of our family are all excellent, creative cooks and my favorite holiday is Thanksgiving - family, food and conversation.
The kitchen is the heart of our home in so many ways. I want to find a way for it to still work that way in the future without putting Olivia in a position to fail. To remove food from this house and from our lives into a background position is almost unthinkable to me.
Wednesday, October 27, 2010
Prader Willi Syndrome - the ironic illness
First, failure to thrive... then thriving "too well"
First, inability to eat anything at all... then the desire to eat anything and everything, literally
Low muscle tone, extremely slow metabolism... and insatiable hunger.
How cruel is that? I've been told that she will only need half the calories of a normal adult when she matures, and will need to exercise at least an hour a day to maintain a healthy weight without becoming obese.
Now, I set a timer and check the clock to feed her because she never cries to be fed or shows any signs of hunger. In the future, I will set a timer and check the clock to feed her because she will be so hungry she will need to feel secure about when and where her next snack or meal is coming from.
So imagine that you are physically exhausted (because you don't have as much lean muscle mass) and starving to death while your body is processing the food ever so slowly. Every movement you make is an extreme effort - almost as if gravity is fighting against you, yet you still make yourself move rigorously at least an hour a day.
Your hunger gnaws at your insides in that sharp, uncomfortable physical pain. Everywhere you go you are presented with food that you can't eat - at playdates, church, the doctor's office, a friend's house, the grocery store, a restaurant, fall festivals, farmers markets, days in the park. People are constantly offering food as a form of hospitality and community and saying to your parents, "Just this one little bite won't hurt him!" or "It's only one piece of candy!"
You never say no because you want it so badly, hoping just this once your hunger goes away. Your parents say no over and over and over and over again to everyone around you as they offer food you can't have because calorie by calorie, it adds up frightenly quickly. You want to join in as the other kids eat, and have fun. Your siblings begin to have an unhealthy relationship with food as they try not to eat in front of you - they NEED those extra calories. Sometimes your siblings will even hide food to eat in order not to eat in front of you.
All the while, the hunger is growing and crawling and banging at your insides, growling and screaming at you.
All the while you are expected to be social, to smile, to get along well with others, to have the willpower and self discipline to turn away cheerfully when you are told you can't have any more food for that meal or snack.
Remember the hungriest you have ever been in your life - maybe a long day on the road, a busy day at work missing breakfast and lunch, perhaps a day or two of deliberate fasting and prayer. Imagine feeling that way every second of every minute of every day for the rest of your life.
This is what Olivia will be fighting against. I hope you fight with us in your prayers, your advocacy, but most of all, your acceptance of her struggles. She's a sweet little baby girl who will one day just want to be loved and included just like everyone else.
First, inability to eat anything at all... then the desire to eat anything and everything, literally
Low muscle tone, extremely slow metabolism... and insatiable hunger.
How cruel is that? I've been told that she will only need half the calories of a normal adult when she matures, and will need to exercise at least an hour a day to maintain a healthy weight without becoming obese.
Now, I set a timer and check the clock to feed her because she never cries to be fed or shows any signs of hunger. In the future, I will set a timer and check the clock to feed her because she will be so hungry she will need to feel secure about when and where her next snack or meal is coming from.
So imagine that you are physically exhausted (because you don't have as much lean muscle mass) and starving to death while your body is processing the food ever so slowly. Every movement you make is an extreme effort - almost as if gravity is fighting against you, yet you still make yourself move rigorously at least an hour a day.
Your hunger gnaws at your insides in that sharp, uncomfortable physical pain. Everywhere you go you are presented with food that you can't eat - at playdates, church, the doctor's office, a friend's house, the grocery store, a restaurant, fall festivals, farmers markets, days in the park. People are constantly offering food as a form of hospitality and community and saying to your parents, "Just this one little bite won't hurt him!" or "It's only one piece of candy!"
You never say no because you want it so badly, hoping just this once your hunger goes away. Your parents say no over and over and over and over again to everyone around you as they offer food you can't have because calorie by calorie, it adds up frightenly quickly. You want to join in as the other kids eat, and have fun. Your siblings begin to have an unhealthy relationship with food as they try not to eat in front of you - they NEED those extra calories. Sometimes your siblings will even hide food to eat in order not to eat in front of you.
All the while, the hunger is growing and crawling and banging at your insides, growling and screaming at you.
All the while you are expected to be social, to smile, to get along well with others, to have the willpower and self discipline to turn away cheerfully when you are told you can't have any more food for that meal or snack.
Remember the hungriest you have ever been in your life - maybe a long day on the road, a busy day at work missing breakfast and lunch, perhaps a day or two of deliberate fasting and prayer. Imagine feeling that way every second of every minute of every day for the rest of your life.
This is what Olivia will be fighting against. I hope you fight with us in your prayers, your advocacy, but most of all, your acceptance of her struggles. She's a sweet little baby girl who will one day just want to be loved and included just like everyone else.
My Deadly Appetite
On Discovery Channel November 3 at 10pm Eastern time will be a show about a boy with Prader Willi Syndrome. I hope it shows their loveable sides as well as their struggles.
Prader Willi Syndrome - the test
Rather quickly after Olivia's birth, I noticed how floppy she was compared to Amelia when she was born. Because of the traumatic events surrounding her birth and the medications she was on, for the first week or so we anxiously waited for the drugs to wear off and her body to stabilize from the shock - hoping that was the reason for the low tone.
It quickly became apparent that was not the case for her. Every day I would look at her in the incubator in the NICU and watch for any signs of movement, sound or tiny bit of progress. They ran test after test on her, trying to find out what the issue might be. I remember the geneticist (Dr. Pai) coming to me and shaking my hand as one of the tests. Apparently one of the possibilities involved a genetic disorder inherited through the mom and a weak handshake would be a positive sign to test further. I found all the information being thrown at me both fascinating and overwhelming at the same time. If all tests came up negative, the diagnosis would be hypotonic cerebral palsy simply by process of elimination, if I remember correctly.
About halfway through our stay, Margaret came to me and mentioned that the geneticist was testing for Prader Willi Syndrome. When she told me that, my heart sank. I knew exactly what it was - I had recently watched a short documentary on some adults with PWS who lived in a house together. For their own safety, the food was locked up, chains were around the freezer and refrigerator and the doors locked them in at night and out of the kitchen. She was slightly surprised I knew what it was, as very few people have heard of it, and told me it was a long shot. The only thing I remember from that conversation is a flippant remark I made..."Well, at least she'll eventually be able to walk!" Up to that point, we thought that Olivia might not ever move much more than she was at the time. I also think I remember her saying, "Whatever you do, don't go and look it up on the internet. Dr. Pai said there is much more current information with positive outcomes and it isn't as bad as it used to be."
So of course I went right to the RM house and looked it up on the internet. The more I read, the more I became sick to my stomach. Every symptom it listed matched. The pictures of the kids looked like Olivia. I knew in my heart that she had it, even while hoping that she didn't and that I was wrong.
There's a remarkable lack of current information on the internet about PWS, with the exception of the PWS organizations. It's not often that you find the internet trailing behind, but to this day Wikipedia still is missing accurate information. I didn't find this out till much later, because my heart was so heavy that I stopped searching the internet a bit too soon to find out what hope was out there. It's still an awful syndrome, but the prognosis is much better than it used to be.
What is Prader-Willi syndrome?
Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000.PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues
Weeks later, the test came back negative. When I found out I began crying and hugging Margaret for joy, yet part of me still felt uneasy.
It quickly became apparent that was not the case for her. Every day I would look at her in the incubator in the NICU and watch for any signs of movement, sound or tiny bit of progress. They ran test after test on her, trying to find out what the issue might be. I remember the geneticist (Dr. Pai) coming to me and shaking my hand as one of the tests. Apparently one of the possibilities involved a genetic disorder inherited through the mom and a weak handshake would be a positive sign to test further. I found all the information being thrown at me both fascinating and overwhelming at the same time. If all tests came up negative, the diagnosis would be hypotonic cerebral palsy simply by process of elimination, if I remember correctly.
About halfway through our stay, Margaret came to me and mentioned that the geneticist was testing for Prader Willi Syndrome. When she told me that, my heart sank. I knew exactly what it was - I had recently watched a short documentary on some adults with PWS who lived in a house together. For their own safety, the food was locked up, chains were around the freezer and refrigerator and the doors locked them in at night and out of the kitchen. She was slightly surprised I knew what it was, as very few people have heard of it, and told me it was a long shot. The only thing I remember from that conversation is a flippant remark I made..."Well, at least she'll eventually be able to walk!" Up to that point, we thought that Olivia might not ever move much more than she was at the time. I also think I remember her saying, "Whatever you do, don't go and look it up on the internet. Dr. Pai said there is much more current information with positive outcomes and it isn't as bad as it used to be."
So of course I went right to the RM house and looked it up on the internet. The more I read, the more I became sick to my stomach. Every symptom it listed matched. The pictures of the kids looked like Olivia. I knew in my heart that she had it, even while hoping that she didn't and that I was wrong.
There's a remarkable lack of current information on the internet about PWS, with the exception of the PWS organizations. It's not often that you find the internet trailing behind, but to this day Wikipedia still is missing accurate information. I didn't find this out till much later, because my heart was so heavy that I stopped searching the internet a bit too soon to find out what hope was out there. It's still an awful syndrome, but the prognosis is much better than it used to be.
What is Prader-Willi syndrome?
Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children. Although the cause is complex it results from an abnormality on the 15th chromosome. It occurs in males and females equally and in all races. Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000.PWS typically causes low muscle tone, short stature if not treated with growth hormone, incomplete sexual development, and a chronic feeling of hunger that, coupled with a metabolism that utilizes drastically fewer calories than normal, can lead to excessive eating and life-threatening obesity. The food compulsion makes constant supervision necessary. Average IQ is 70, but even those with normal IQs almost all have learning issues. Social and motor deficits also exist. At birth the infant typically has low birth weight for gestation, hypotonia (weak muscles), and difficulty sucking due to the hypotonia which can lead to a diagnosis of failure to thrive. The second stage (“thriving too well”), has a typical onset between the ages of two and five, but can be later. The hyperphagia (extreme unsatisfied drive to consume food) lasts throughout the lifetime. Children with PWS have sweet and loving personalities, but this phase is also characterized by increased appetite, weight control issues, and motor development delays along with some behavior problems and unique medical issues
Weeks later, the test came back negative. When I found out I began crying and hugging Margaret for joy, yet part of me still felt uneasy.
Tuesday, October 26, 2010
Long Time Coming
This time a year ago, Olivia Grace was almost 2 1/2 months old on the day she was supposed to be born. She was still in the hospital, I was still living in the Ronald McDonald House, and Mom and Dad were still living at our house taking care of Amelia. Rafe was settling into his new job, working on EWS and taking care of Amelia at night and then driving to Charleston on the weekends to be with Olivia. I, in turn, drove home to see Amelia.
This time of year is my favorite. I love everything about it - I hit every fall festival, farmer's market, art show, theater in the park, pumpkin patch and outdoor event that I can. Last year, however, it seems that fall never came. It was the height of summer, I had the emergency delivery, and then in a blink it was Christmas.
I only remember a few scenes at this moment from last year. Going to a farmer's market in Beaufort and buying bags and bags of freshly caught shrimp; buying bread and home made cheese from an Italian who slipped me a few extra when he heard about our situation....the short, windy and dreary daily walk from Ronald McDonald house to the hospital, through the corridors and up the elevators to the NICU. Trudging 3-4 times a day to the hospital with my cooler of breast milk to deliver, going back to RM house to eat meals and talk at the table with the other families, and occasionally sitting outside on a bench by the front door of the hospital and eating spinach, feta and tomato pizza. Even now it's somewhat of a irony to me that I lived in Charleston for over 2 months and know intimately the walk from the house to the hospital and not much else. I was very lucky that it wasn't during rainy season and I never had to walk there when the streets were flooded.
There is a lot I don't remember about last year, and other things I remember in excruciating detail. When Livie was born, she could raise her eyebrows but not open her eyes. She could occasionally kick her feet out but very rarely. By October last year, she could open her eyes, occasionally move her head and sometimes move her body a small amount. She had tubes coming out of her, a colostomy and a gtube, but the majority of the tubes had all come out by this time. She was already getting therapy in the hospital. She was still having tests run on her to try and find out what exactly happened to her and what direction we needed to go in next. I can't remember if she was off oxygen and on room air at this point but I don't think so. She still made no sound.
This blog started off as a way for me to share things we were doing with my husband when he deployed. At the time, it was easier for him to access a website than to download pictures and check email. It also became a way to keep in touch with far flung friends and family with busy lives of their own - instead of flooding an inbox with emails and pictures, it's here for those who love us to peruse at their leisure.
When Olivia was born, it was a way for our church and military family to see updates and pictures of the little girl and family they were praying for and helping.
It's going to morph into something else, and be open to more people whose respectful comments are always welcomed. My husband is deployed yet again, and we have a diagnosis for Olivia. Some posts will be of more interest to one group or another. This blog is still a way for me to document our lives... mainly for my husband, our family and friends. It's just that our family got a little larger this past year - we are now also part of the Prader Willi Syndrome family.
And in a not so small way, this blog is for me.
This time of year is my favorite. I love everything about it - I hit every fall festival, farmer's market, art show, theater in the park, pumpkin patch and outdoor event that I can. Last year, however, it seems that fall never came. It was the height of summer, I had the emergency delivery, and then in a blink it was Christmas.
I only remember a few scenes at this moment from last year. Going to a farmer's market in Beaufort and buying bags and bags of freshly caught shrimp; buying bread and home made cheese from an Italian who slipped me a few extra when he heard about our situation....the short, windy and dreary daily walk from Ronald McDonald house to the hospital, through the corridors and up the elevators to the NICU. Trudging 3-4 times a day to the hospital with my cooler of breast milk to deliver, going back to RM house to eat meals and talk at the table with the other families, and occasionally sitting outside on a bench by the front door of the hospital and eating spinach, feta and tomato pizza. Even now it's somewhat of a irony to me that I lived in Charleston for over 2 months and know intimately the walk from the house to the hospital and not much else. I was very lucky that it wasn't during rainy season and I never had to walk there when the streets were flooded.
There is a lot I don't remember about last year, and other things I remember in excruciating detail. When Livie was born, she could raise her eyebrows but not open her eyes. She could occasionally kick her feet out but very rarely. By October last year, she could open her eyes, occasionally move her head and sometimes move her body a small amount. She had tubes coming out of her, a colostomy and a gtube, but the majority of the tubes had all come out by this time. She was already getting therapy in the hospital. She was still having tests run on her to try and find out what exactly happened to her and what direction we needed to go in next. I can't remember if she was off oxygen and on room air at this point but I don't think so. She still made no sound.
This blog started off as a way for me to share things we were doing with my husband when he deployed. At the time, it was easier for him to access a website than to download pictures and check email. It also became a way to keep in touch with far flung friends and family with busy lives of their own - instead of flooding an inbox with emails and pictures, it's here for those who love us to peruse at their leisure.
When Olivia was born, it was a way for our church and military family to see updates and pictures of the little girl and family they were praying for and helping.
It's going to morph into something else, and be open to more people whose respectful comments are always welcomed. My husband is deployed yet again, and we have a diagnosis for Olivia. Some posts will be of more interest to one group or another. This blog is still a way for me to document our lives... mainly for my husband, our family and friends. It's just that our family got a little larger this past year - we are now also part of the Prader Willi Syndrome family.
And in a not so small way, this blog is for me.
Wednesday, March 17, 2010
Updates this weekend
I know it's been a long time coming. This weekend I will be posting updates and pictures.
Thursday, February 4, 2010
Monday, February 1, 2010
So far, so good (fingers crossed)
Olivia hasn't gotten sick.
I did, though. Last night. Rafe was on duty and let me tell you, that was tricky. Olivia sleeps in our room so we can hear the enteral pump and her breathing, right next to our bed. So as not to get her sick, I slept on a toddler mattress with a couch cushion extension on the floor by the door to our bedroom with the door open.
No wonder Amelia hates that mattress! It's hard as a rock.
I did, though. Last night. Rafe was on duty and let me tell you, that was tricky. Olivia sleeps in our room so we can hear the enteral pump and her breathing, right next to our bed. So as not to get her sick, I slept on a toddler mattress with a couch cushion extension on the floor by the door to our bedroom with the door open.
No wonder Amelia hates that mattress! It's hard as a rock.
Friday, January 29, 2010
Thank you GOD for answered prayer!!!
We have the most perfect person possible, someone I've never even met, who has volunteered to come by today and help with Olivia. I am so grateful for all the prayer!
By 800 this morning, I'd had a phone call by someone offering suggestions for help and a few minutes later we had a solution. Thank you to my church family and all my friends and even the strangers who are now reading this blog and praying for us. We even have someone bringing us by more Lysol spray on their way to the doctor to help me sanitize some of the fabric surfaces!
Laundry is still going. Amelia finally stopped throwing up around 5 am. She's resting on a bunch of (now clean again) towels watching movies and Olivia is still in the other room. Soon Olivia will have someone here to keep her company today.
Thank you to everyone.
By 800 this morning, I'd had a phone call by someone offering suggestions for help and a few minutes later we had a solution. Thank you to my church family and all my friends and even the strangers who are now reading this blog and praying for us. We even have someone bringing us by more Lysol spray on their way to the doctor to help me sanitize some of the fabric surfaces!
Laundry is still going. Amelia finally stopped throwing up around 5 am. She's resting on a bunch of (now clean again) towels watching movies and Olivia is still in the other room. Soon Olivia will have someone here to keep her company today.
Thank you to everyone.
Please pray for us...
Amelia has a pretty bag GI bug. We know she doesn't have the flu because she's missing some major symptoms, so it seems the shots are working. She's been throwing up all night and we've gone through every towel in the house. Poor thing is now sleeping on the bathroom floor on towels and blankets, throwing up every once in a while and I change out the blankets. She was in our room sleeping, waiting for me to come back from a Focus on the Family seminar in Bluffton, woke up throwing up and then ran through the house. The washing machine has been humming tonight! I haven't gone to sleep yet, it's about 3 am.
Rafe is in the guest room with Olivia. It was about the only place we could be sure Amelia hadn't touched anytime today. I'm washing laundry and tending to Mia and of course pumping in the middle of all of that. He has an early morning PT and then duty on Saturday, so he basically won't be home until Sunday.
My prayer request is this: that Olivia does not get sick. She still doesn't have the ability to throw up and I'm terrified that she will get sick, vomit and aspirate. I am going to have to keep her in that room all day tomorrow while I scrub down and sanitize the house. The second prayer request is that I am trying to find one person with their flu shots to come and hang out in that room with Olivia all day long, so she has some playtime and company. It's a long shot, but I will pay that person, so if you or anyone you know is reading this and interested let me know. If not, then please pray for Olivia's health and the right sitter showing up. My third prayer request is that Amelia is now done being sick and won't put her fingers in her mouth or her nose and then touch anything else in this house. I know, I ask for the impossible with a 3 year old.
Rafe is in the guest room with Olivia. It was about the only place we could be sure Amelia hadn't touched anytime today. I'm washing laundry and tending to Mia and of course pumping in the middle of all of that. He has an early morning PT and then duty on Saturday, so he basically won't be home until Sunday.
My prayer request is this: that Olivia does not get sick. She still doesn't have the ability to throw up and I'm terrified that she will get sick, vomit and aspirate. I am going to have to keep her in that room all day tomorrow while I scrub down and sanitize the house. The second prayer request is that I am trying to find one person with their flu shots to come and hang out in that room with Olivia all day long, so she has some playtime and company. It's a long shot, but I will pay that person, so if you or anyone you know is reading this and interested let me know. If not, then please pray for Olivia's health and the right sitter showing up. My third prayer request is that Amelia is now done being sick and won't put her fingers in her mouth or her nose and then touch anything else in this house. I know, I ask for the impossible with a 3 year old.
Saturday, January 23, 2010
Attitude of Gratitude
I asked for help this past week from church and other resources. It took me a while to do it; I actually felt a bit guilty for doing it since I had already received so much help with dinners and emotional support when Olivia came home. I know there are other women in our local community (Parris Island and Tidal Creek) that have some big needs also, and I didn't want to be greedy.
My mom was going to come out at the beginning of January again for 2 months to help with Olivia's therapies, give me a break, and just generally provide moral support. But a funny thing happened on the way to South Carolina - my very dear brother in law had a serious sledding accident during a visit to Kansas City. They have a grand total of 10 kids; one of whom was due only 3 days after Olivia was due and is cute as a button. So my parents are down in Texas helping out for a while as my BIL was in the hospital in KC.
The hardest part is not the individual tasks; it's the constant repetition of it all. I'm motivated by the army of therapists who show up at my house 6 days a week and who individually tell me they see a difference and an improvement from their previous visit a week earlier. I know that early intervention is the key and all this hard work will pay off for my little girl's future success at being able to walk, talk and move like everyone else. But it can be exhausting to be "on" all the time. Sometimes the simple mommy things fall by the wayside (singing, relaxing, playing, reading stories, cooing) because I can't muster one. more. smiley. face. after pumping my own milk, doing her therapies, trying to feed her, hooking her gtube up to the machine, and keeping her upright while she's on the enteral pump. I hold her and fall asleep. I know that those playtimes are equally as important therapies as all the physical and motor therapies, but by the time I get the "time" for them, I'm out of emotion. Then Amelia comes home from school (Thank goodness for Montessori and Miss Isabel who takes her!) and she needs just as much interactive play with Mommy after being away all day.
It's difficult to ask for help partly because of the restrictions - we can't have other children over to our house to play until RSV season is officially over (she gets shots every month), I can't send Amelia to any house that has had anyone sick in it for the past 7 days (and which mom of a preschooler doesn't have a sick kid! That's what they do!), and anyone who wants to hold Olivia needs to have had their flu shots, including swine flu; wear clean clothing (as in a fresh shirt if they have been around a crowd of people), not be a smoker and wash/sanitize your hands before holding her. It just seems like an onerous list of do's and don'ts.
As a mom and a wife, one of my most important goals is to have my home be a peaceful sanctuary for my family. In the midst of all this, it becomes an even more important goal; almost a need. While I can do the individual tasks, I can't do them all well or all the time and still have my family thrive. I know this is only for a season, and if I have the resources available to us to reach that goal, then I am going to accept any help that comes my way.
So this week I am SO very grateful for any words of encouragement, dinners dropped by, and offers to hold and play with Olivia or Amelia. They are and will be appreciated more than you can know. If you have dropped by food and are still missing a dish, I promise I have it but haven't had a chance to get it back yet. And I have only been able to send out about half the thank you cards for the meals or help we've had in the past. But please know that if you are one of those people who has volunteered your time, energy, prayers or support that I am extremely grateful. If you know us and wish to help, please contact Leslie from Tidal Creek Fellowship. Their office number is available online (not sure I should post it on a blog); or you can contact me directly via this blog or my personal email.
My mom was going to come out at the beginning of January again for 2 months to help with Olivia's therapies, give me a break, and just generally provide moral support. But a funny thing happened on the way to South Carolina - my very dear brother in law had a serious sledding accident during a visit to Kansas City. They have a grand total of 10 kids; one of whom was due only 3 days after Olivia was due and is cute as a button. So my parents are down in Texas helping out for a while as my BIL was in the hospital in KC.
The hardest part is not the individual tasks; it's the constant repetition of it all. I'm motivated by the army of therapists who show up at my house 6 days a week and who individually tell me they see a difference and an improvement from their previous visit a week earlier. I know that early intervention is the key and all this hard work will pay off for my little girl's future success at being able to walk, talk and move like everyone else. But it can be exhausting to be "on" all the time. Sometimes the simple mommy things fall by the wayside (singing, relaxing, playing, reading stories, cooing) because I can't muster one. more. smiley. face. after pumping my own milk, doing her therapies, trying to feed her, hooking her gtube up to the machine, and keeping her upright while she's on the enteral pump. I hold her and fall asleep. I know that those playtimes are equally as important therapies as all the physical and motor therapies, but by the time I get the "time" for them, I'm out of emotion. Then Amelia comes home from school (Thank goodness for Montessori and Miss Isabel who takes her!) and she needs just as much interactive play with Mommy after being away all day.
It's difficult to ask for help partly because of the restrictions - we can't have other children over to our house to play until RSV season is officially over (she gets shots every month), I can't send Amelia to any house that has had anyone sick in it for the past 7 days (and which mom of a preschooler doesn't have a sick kid! That's what they do!), and anyone who wants to hold Olivia needs to have had their flu shots, including swine flu; wear clean clothing (as in a fresh shirt if they have been around a crowd of people), not be a smoker and wash/sanitize your hands before holding her. It just seems like an onerous list of do's and don'ts.
As a mom and a wife, one of my most important goals is to have my home be a peaceful sanctuary for my family. In the midst of all this, it becomes an even more important goal; almost a need. While I can do the individual tasks, I can't do them all well or all the time and still have my family thrive. I know this is only for a season, and if I have the resources available to us to reach that goal, then I am going to accept any help that comes my way.
So this week I am SO very grateful for any words of encouragement, dinners dropped by, and offers to hold and play with Olivia or Amelia. They are and will be appreciated more than you can know. If you have dropped by food and are still missing a dish, I promise I have it but haven't had a chance to get it back yet. And I have only been able to send out about half the thank you cards for the meals or help we've had in the past. But please know that if you are one of those people who has volunteered your time, energy, prayers or support that I am extremely grateful. If you know us and wish to help, please contact Leslie from Tidal Creek Fellowship. Their office number is available online (not sure I should post it on a blog); or you can contact me directly via this blog or my personal email.
Thursday, January 21, 2010
Monday, January 18, 2010
Best Husband Ever
Yesterday I was more tired than I think I have ever been in my life. It's been the endless weeks of groundhog day and struggling to catch up with the basics. Rafe's been busy with EWS and a few other things with work. Amelia has been very high maintenance lately, wanting me to play with her every second. ALL of which is very understandable, but moment by moment, things just piled up and it seemed that sleep was many "must do" chores away (meals, Olivia's issues).
I was so tired I was slurring my words, and saying things that didn't match. I cooked an ear plug. I went to the commissary yesterday and today I found my eggs stored on the back porch. Why I thought that was a good idea, I have no clue!
So he took Amelia out for a "date" to Taco Bell, brought me home tacos and sent me to bed. I found out today he worked until 4 AM washing, drying, folding, hanging laundry; taking down the Christmas tree; washing 2 loads of dishes; cleaning the kitchen; organizing the tupperware cabinet; vacuuming the carpet; and I'm not sure what else but I've been discovering stuff all day long. He woke up at around 1030 am, sent me back to bed for a nap and worked on cleaning and organizing Mia's room and my room. I got up, made lunch, and he sent me back to bed again. I got up in time to make dinner, run an errand and go back to bed.
To put the magnitude of this in perspective, that just doesn't happen in this house. Before we had kids, that was my job; and he's been pretty much gone 3 out of the last 4 years for one job related reason or another - so when he's home we have family time instead of him having housework "chores".
All this, and he fed Olivia and took care of her all day too!
I feel like a new person and I can actually string a sentence together.
SWOOOOOOOOOOOOOOOOOOOON!!!
This was WAY better than jewelry or flowers. I love you, honey!
I was so tired I was slurring my words, and saying things that didn't match. I cooked an ear plug. I went to the commissary yesterday and today I found my eggs stored on the back porch. Why I thought that was a good idea, I have no clue!
So he took Amelia out for a "date" to Taco Bell, brought me home tacos and sent me to bed. I found out today he worked until 4 AM washing, drying, folding, hanging laundry; taking down the Christmas tree; washing 2 loads of dishes; cleaning the kitchen; organizing the tupperware cabinet; vacuuming the carpet; and I'm not sure what else but I've been discovering stuff all day long. He woke up at around 1030 am, sent me back to bed for a nap and worked on cleaning and organizing Mia's room and my room. I got up, made lunch, and he sent me back to bed again. I got up in time to make dinner, run an errand and go back to bed.
To put the magnitude of this in perspective, that just doesn't happen in this house. Before we had kids, that was my job; and he's been pretty much gone 3 out of the last 4 years for one job related reason or another - so when he's home we have family time instead of him having housework "chores".
All this, and he fed Olivia and took care of her all day too!
I feel like a new person and I can actually string a sentence together.
SWOOOOOOOOOOOOOOOOOOOON!!!
This was WAY better than jewelry or flowers. I love you, honey!
Wednesday, January 13, 2010
Cooing!
I know I keep promising updates, etc. but I'm so tired! So here is a quick one:
Each week, we have 2 speech therapy visits, 2 occupational therapy visits, 1 physical therapy visit (I wish this one was two also), and 1 cognitive therapy visit. To my house. Thank you, Lord, for early intervention programs! And thank you for traveling therapists!
This week I thought it was my imagination that she was cooing... but no! She's made cooing noises 3 times today! First it was no vocalizations, then tiny mews or baby cat meow sounds on occasion, then grunting and finally - this week - a coo!!
It's amazing what complexities I took for granted with my first daughter. I'm intimately involved with the tiniest developmental steps right now.
Each week, we have 2 speech therapy visits, 2 occupational therapy visits, 1 physical therapy visit (I wish this one was two also), and 1 cognitive therapy visit. To my house. Thank you, Lord, for early intervention programs! And thank you for traveling therapists!
This week I thought it was my imagination that she was cooing... but no! She's made cooing noises 3 times today! First it was no vocalizations, then tiny mews or baby cat meow sounds on occasion, then grunting and finally - this week - a coo!!
It's amazing what complexities I took for granted with my first daughter. I'm intimately involved with the tiniest developmental steps right now.
Tuesday, December 8, 2009
Wahoo!
Olivia is 10# today! Not bad for starting off at 3# 2 oz. She's right on target for weight according to the doctor. And she is over 22" long.
And I am too tired to write anything else. :)
And I am too tired to write anything else. :)
Thursday, November 12, 2009
Olivia is home!
It is SO nice to be back at home! All of us feel so much better just being together in one house again.
Olivia was able to come home this past Monday. We hit the house around 5 pm and it's been a whirlwind around here. We've had two visits at home from a nurse and one visit out to her pediatrician. I love her pediatrician - he's got a well child entrance that is separate from the sick child entrance and waiting area. We were able to go when no one else was in the office so she was not exposed to anything. He spent an hour and a half with us learning about her and looking at her. I was very impressed. He used to work in the same hospital we just left, and is still remembered by the staff that works there with an enormous amount of respect. We have two more nursing visits at home and one more doctor visit between now and next Wednesday - hopefully it will dwindle down after that.
I know our updates have been spotty and they might continue to be so for a while. But to pull it all together with everything she went through, I thought I would list some of the things put on her "unofficial" discharge diagnoses. This is a short synopsis of what she has been through the past two plus months. Lots of medical terminology; hope it makes sense. While I lived through it with her, I'm not exactly sure what some of these are in plain English - I'm just copying off the paper. We have a few more appointments coming up that might add some information to this - hopefully not!
Former preterm infant now 42 4/7 weeks PMA
RDS (resolved)
Left Pneumothorax (resolved)
Respiratory Acidosis (resolved)
Seizures
Anemia
Pneumopericardium (resolved)
Bigeminy
Grade 2 IVH bilaterally (brain bleed)
NEC
Pneumoperitoneum (resolved)
Hypotension (resolved)
Coagulopathy (resolved)
Thrombocytopenia (resolved)
Bowel perforation s/p illeostomy placement
BPD
hypotonia
Bowel reanastamosis
G-tube placement
Gastroesophageal reflux
Olivia was able to come home this past Monday. We hit the house around 5 pm and it's been a whirlwind around here. We've had two visits at home from a nurse and one visit out to her pediatrician. I love her pediatrician - he's got a well child entrance that is separate from the sick child entrance and waiting area. We were able to go when no one else was in the office so she was not exposed to anything. He spent an hour and a half with us learning about her and looking at her. I was very impressed. He used to work in the same hospital we just left, and is still remembered by the staff that works there with an enormous amount of respect. We have two more nursing visits at home and one more doctor visit between now and next Wednesday - hopefully it will dwindle down after that.
I know our updates have been spotty and they might continue to be so for a while. But to pull it all together with everything she went through, I thought I would list some of the things put on her "unofficial" discharge diagnoses. This is a short synopsis of what she has been through the past two plus months. Lots of medical terminology; hope it makes sense. While I lived through it with her, I'm not exactly sure what some of these are in plain English - I'm just copying off the paper. We have a few more appointments coming up that might add some information to this - hopefully not!
Former preterm infant now 42 4/7 weeks PMA
RDS (resolved)
Left Pneumothorax (resolved)
Respiratory Acidosis (resolved)
Seizures
Anemia
Pneumopericardium (resolved)
Bigeminy
Grade 2 IVH bilaterally (brain bleed)
NEC
Pneumoperitoneum (resolved)
Hypotension (resolved)
Coagulopathy (resolved)
Thrombocytopenia (resolved)
Bowel perforation s/p illeostomy placement
BPD
hypotonia
Bowel reanastamosis
G-tube placement
Gastroesophageal reflux
Monday, November 2, 2009
still early, the day after
I was so overwhelmed in the beginning and still in such a state of shock that when I look at these pictures, I am noticing for the first time some of the seperate wires. So many were going in different directions that she just looked tangled up in them to me.
Jet ventilator
The ventilator she's on was connected to a huge stationary machine by the side of her bed. She couldn't really be held until she went to the next step down on ventilators, and her head had to be positioned very carefully. You can see the original chest tube scar on her right side; the one in there at this point was the second or third one.
Wednesday, October 28, 2009
More Good News!
She has started taking breast milk through her feeding tube. 4 cc's every 3 hours for the last 24 hours, this morning it was 8 cc's for 3 feedings, then up to 12 after that! We're hoping she'll be up to full feeds in 3-5 days so they can stop the IV nutrition. They didn't put a PICC line in after surgery because they had trouble finding veins.
All that was for the nurses in my family who will know what it means! For the rest of us, 80 cc is a little over 2.5 fluid ounces or 5 tablespoons of liquid. Basically, her intestines look like they are working fine and healing well.
All that was for the nurses in my family who will know what it means! For the rest of us, 80 cc is a little over 2.5 fluid ounces or 5 tablespoons of liquid. Basically, her intestines look like they are working fine and healing well.
Mental Health Day
Yesterday I told our nurse that I didn't want any bad news, and if they had any for me it would have to wait until today. Olivia has been improving radically in the past week since the surgery. The surgeries were for the feeding tube in her belly and to reconnect her intestines and should not really make a difference to her ability to move. Rafe said he felt like her body was like, "HEY! That hurt! Is that attached to me? Wait... I have legs.... I have arms.... I have a body! lets see if I can move them around!"
So it has been wonderful to see her making movements similar to what a newborn would make. She can curl her hands, bring her arms to midline, move her head slightly on occasion and flex her legs and bring them in. She is still floppy, but her muscle tone has improved significantly. They told us that after her surgery she would be intubated and back on a ventilator (she had been weaned to a nasal cannula). However, less than a few hours after her surgery, she was fighting the intubation so they took it out and put her back on the cannula (this was a week ago). Sunday she was breathing room air and has been ever since. Her O2 levels range from 86 to 100, but have mostly been high 90s. She is breathing ON HER OWN!
Things were going so well that I really did not want to hear anything negative yesterday. I just wanted to savor the moment and watch her and snuggle with her.
We still have a long ways to go, but she looks great. I will post more pictures and updates tonight. Off to the hospital.
So it has been wonderful to see her making movements similar to what a newborn would make. She can curl her hands, bring her arms to midline, move her head slightly on occasion and flex her legs and bring them in. She is still floppy, but her muscle tone has improved significantly. They told us that after her surgery she would be intubated and back on a ventilator (she had been weaned to a nasal cannula). However, less than a few hours after her surgery, she was fighting the intubation so they took it out and put her back on the cannula (this was a week ago). Sunday she was breathing room air and has been ever since. Her O2 levels range from 86 to 100, but have mostly been high 90s. She is breathing ON HER OWN!
Things were going so well that I really did not want to hear anything negative yesterday. I just wanted to savor the moment and watch her and snuggle with her.
We still have a long ways to go, but she looks great. I will post more pictures and updates tonight. Off to the hospital.
Subscribe to:
Posts (Atom)
Posts
