I took these videos the night Rafe left for deployment. We sat around the fire all day escaping from the cold and wet rain outside. Looking at Olivia running around made me think of how much I wished I had seen a video like this when she was born. I could not have imagined at that time how much she would be able to do. Not only was she born with Prader-Willi Syndrome, but the additional birth trauma left her so motionless for so long that it was a celebration if she just turned her own head. Now sometimes I can't catch her if she decides to run around the "loop" of the kitchen/dining room/livingroom/hall of the house!
Showing posts with label preemie. Show all posts
Showing posts with label preemie. Show all posts
Friday, November 23, 2012
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.
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
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.
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.
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