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.
Tuesday, October 27, 2009
Floppy Baby
Olivia was born at 10:28 pm. An hour into it, we were told it was a good time to pray after my husband left the room to ask about her. Three and a half hours later, the first people we saw were the two people from the emergency flight crew from MUSC. They wheeled her incubator in the room next to the bed so that I could reach up and touch her leg through the round window before they took off with her. They also gave me a polaroid picture of her - when I can find a way to scan it, I'll post it. She was yellow, bruised, and flat. They had worked on her for that entire time trying to stabilize her and there were some oxygen deprivation issues.
You can see how floppy her tone is in this picture. Any semblance of positioning was done by the nurses in all of the pictures I've posted so far. They would move her in different positions, taking into account the tubes, wires and lines coming out of her but also trying to keep her muscles stretched. In her right arm is a PICC line for direct nutrition.
It was excruciating to watch her lay so still. At the time, the doctors were telling us that it could be from the tremendous amount of trauma she suffered after birth and the medications for pain and seizures. It was a time to just wait and watch.
You can see how floppy her tone is in this picture. Any semblance of positioning was done by the nurses in all of the pictures I've posted so far. They would move her in different positions, taking into account the tubes, wires and lines coming out of her but also trying to keep her muscles stretched. In her right arm is a PICC line for direct nutrition.
It was excruciating to watch her lay so still. At the time, the doctors were telling us that it could be from the tremendous amount of trauma she suffered after birth and the medications for pain and seizures. It was a time to just wait and watch.
Bilirubin
Three days into this, Olivia's bilirubin levels were very high and she was
put under lights with a little blindfold on.
put under lights with a little blindfold on.
At the bottom right of the picture is a breast pad - compare that to the size of her head for an idea of how little she was.
She has had three chest tubes in her side all together (the slender white tube at the bottom)to help her lungs.
Sweet big sister
I can only imagine what is going through Amelia's mind by the look on her face. One thing that sort of surprized me was how attached she was to Olivia already and what a sad or concerned look was on her face for some of these pictures. She's such a sweet and empathetic child.
August 25
Looking through the incubator - it's covered with a cloth so she was
shielded from the lights and just lifted up when she had visitors.
shielded from the lights and just lifted up when she had visitors.
Double click this picture and compare the size of Rafe's finger with the size of her leg.
Due Date
Olivia was due October 25 - this past Thursday. Sunday she weighed 6#12oz. and was 21.5 inches long. In two months she has gained almost four pounds and 4.5 inches. Amazing to think that she would have still been in my belly; she looks huge now compared to when she was born.
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