Today is Thursday...
I am excited because I got a Pak & Play and now this means that I can have the best of both worlds..
MY BOPPY and a bed on wheels so I can be with the rest of the family...
This was a great purchase!!
My mommy was able to go to a luncheon with her special friends from Leadership Dixie. She was glad to see them.
My Nana is so nice to me. She stayed with me and held me.
She wishes I could get comfortable, but I just have a hard time...noone can really pinpoint "why" I am so cranky..I just act like I don't feel very good most of the time...
My mommy just keeps hoping I will grow out of this..and because I'm a pretty tough kiddo, I will..I just need time...
Later this afternoon, my mommy noticed that my clothes were wet around my g-tube. So, she cleaned my tube area up, retaped it and changed my clothes.
About 40 minutes later, she noticed that my new pair of clothes was wet in the same place and when she opened my snap jammies, she saw that the tape (she just put on) was soaked and so was the front of my diaper.
YUCK...stomach content is leaking out..
My mommy needed to get this off of my skin right away because this stomach content can eat my skin if it's left on there..
She wasn't sure "what" is going on...because, a small amount of leakage is normal, but this is more than my mommy had seen before..
She cleaned me up and changed out my clothes again.
This time, she called the doctor's office and was told she had 2 choices...1) Come into the night clinic and be seen OR..2) Stop feeding me until tomorrow and then come see my own doctor.
My mommy was a little surprised that they suggested to stop feeding me because I am on a continuous feeding schedule..(so, this was not an option.)
My mommy pulled out her "book" that she received at the bigger hospital, and started to read about what may be the problem..
At this point, my clothes were again wet and all the "new" tape was coming loose because of the stomach content leaking out..
So, my mommy asked my Nana to help her by holding the tube in place very sturdy and hard while she withdrew the water out of the balloon to see "how" much water was in there...sure enough, it was on the small side and needed more water..
Sometimes "IF" the balloon has leaked water out, then the hole isn't getting plugged very well, and stomach content can leak out..this is what happened to me...
This was very stressful for my mommy because she had only "practiced" this procedure on an example...to do this on a real, live, moving target (me) is a little different for sure..
Her and my Nana worked up a "stress sweat."
BUT..
We got it taken care of and I slept the whole time...
My mommy taped me all back up and the "stuff" is staying "inside" my stomach now..this is where it belongs..
What a great learning experience for my mommy and Nana and I am the perfect person to "practice
on...
My brother and sister have the next 4 days off of school for Easter break and I am happy that we can spend time together.
I am so lucky...
I am so blessed...
My life is a good life...
I'm Three
Thursday, April 21, 2011
DAY OF LIFE 137
Today is Wednesday...
I'm still pretty squirmy at times, and I reflux. It get's kind of stuck at the base of my throat and then I make a weird choking sound while I try and catch my breath...
My mommy and Nana watch me do this and just want to "help" me in some way, but I just have to do this on my own...
I spent a lot of time with Nana today because my mommy and daddy were asked to go to a hospital event to talk about my story. The hospital is going to expand the NICU and it will cost around $500,000 for this change, so this event was to "introduce" this change and the benefits it will have for families.. (TOTALLY WORTH IT.)
It was a special day and my parents felt pretty emotional and passionate about my experience and towards the people that helped me..
This experience has changed my family's life forever and there aren't words to explain their sincere gratitude to this organization...
I guess that life has a funny way of showing a new perspective on "what" is "really" important, right?
My brother and sister had a pretty good day too...they spent time with our good friends from SLC. It was good for them to go have some fun...I can't wait until I can go to the swimming pool with them...
Maybe in the Summer...
One step at a time...this is great advice that my Nana gives us (she's a pretty smart lady.)
I'm still pretty squirmy at times, and I reflux. It get's kind of stuck at the base of my throat and then I make a weird choking sound while I try and catch my breath...
My mommy and Nana watch me do this and just want to "help" me in some way, but I just have to do this on my own...
I spent a lot of time with Nana today because my mommy and daddy were asked to go to a hospital event to talk about my story. The hospital is going to expand the NICU and it will cost around $500,000 for this change, so this event was to "introduce" this change and the benefits it will have for families.. (TOTALLY WORTH IT.)
It was a special day and my parents felt pretty emotional and passionate about my experience and towards the people that helped me..
This experience has changed my family's life forever and there aren't words to explain their sincere gratitude to this organization...
I guess that life has a funny way of showing a new perspective on "what" is "really" important, right?
My brother and sister had a pretty good day too...they spent time with our good friends from SLC. It was good for them to go have some fun...I can't wait until I can go to the swimming pool with them...
Maybe in the Summer...
One step at a time...this is great advice that my Nana gives us (she's a pretty smart lady.)
DAY OF LIFE 136
Happy Tuesday!!
I had a pretty crazy day...
It took my mommy about 45 minutes to get me ready and then into the car to go to the doctor..
I do NOT like the car or my car seat..THANK GOODNESS Nana is still here..It's a chore getting a newborn OUT the door anyway, but it's an extra chore getting me out the door with all my stuff (feeding machine, packed into a back-pack, accompanied by a murphy drip trying to keep it from spilling too and my diaper bag with all my "emergency" g-tube stuff that has to be with me all of the time.
My mommy worked up a sweat getting me out the door...
Today was my doctor appointment and I got shots...OUCH!!
It was time for my 4 month shots and I needed a Synagis to help me "try" and avoid RSV..it would not be a good thing if I were to get this...
I got 4 shots (2 in each leg)..OUCH!! OUCH!! OUCH!! OUCH!!
It was hard for my mommy to watch them poke me..(Brought back some memories that she wanted to forget..)
My mommy got a call from the Pharmacist today and he was so apologetic about my "overdose" mistake..
He assured her that he has put in place some more "checks and balances" so this won't happen again to someone else...
He really wanted my mommy to get some testing done on my liver and kidney's but both her and my daddy decided not to.
The pharmacist is a pretty nice guy and since I didn't get sick, my mommy was just grateful that we caught it when we did..
So many things to be grateful for, right? :)
Taking it one day at a time...Life is good...
I had a pretty crazy day...
It took my mommy about 45 minutes to get me ready and then into the car to go to the doctor..
I do NOT like the car or my car seat..THANK GOODNESS Nana is still here..It's a chore getting a newborn OUT the door anyway, but it's an extra chore getting me out the door with all my stuff (feeding machine, packed into a back-pack, accompanied by a murphy drip trying to keep it from spilling too and my diaper bag with all my "emergency" g-tube stuff that has to be with me all of the time.
My mommy worked up a sweat getting me out the door...
Today was my doctor appointment and I got shots...OUCH!!
It was time for my 4 month shots and I needed a Synagis to help me "try" and avoid RSV..it would not be a good thing if I were to get this...
I got 4 shots (2 in each leg)..OUCH!! OUCH!! OUCH!! OUCH!!
It was hard for my mommy to watch them poke me..(Brought back some memories that she wanted to forget..)
My mommy got a call from the Pharmacist today and he was so apologetic about my "overdose" mistake..
He assured her that he has put in place some more "checks and balances" so this won't happen again to someone else...
He really wanted my mommy to get some testing done on my liver and kidney's but both her and my daddy decided not to.
The pharmacist is a pretty nice guy and since I didn't get sick, my mommy was just grateful that we caught it when we did..
So many things to be grateful for, right? :)
Taking it one day at a time...Life is good...
Monday, April 18, 2011
DAY OF LIFE 135 - Welcome To Holland
Today is Monday...
I had a really good day..a really good day...I rested a lot!
My mommy and daddy visited the local NICU today and my mommy left with a lot of unexplainable emotion..
My family was WAY ready for Chapter 1 of my book to end, but sometimes it's hard for my mommy to put this all into words...
She left feeling REALLY happy and relieved that I wasn't at the hospital anymore..and that she wouldn't ever have to pick up the phone to "call in" to see me..
BUT..
She also left feeling kind of sad and a little empty too...she knew that ending Chapter 1 meant that she wouldn't see her good friends very much anymore..these awesome, dedicated people spent one of the most stressful times of life with her and she feels super attached to them...they gave her so much support with me and totally understood what was going on..
She's feeling a little overwhelmed that now she will need to "call" a totally different group of people if I need help and she knows that Nana will be going home soon (unless we can talk Grandpa into getting a home down here - hint, hint) too & she will miss her...
It was just a day of unexplainable emotion..happy, sad and all of the above..(it must be a mommy thing...it's a good thing that I had a "good" day, right?)
She was reminded today of a story that she once heard in the NICU parent hour and then again from her good friend....
Welcome to Holland!! What a beautiful place to be!!
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I had a really good day..a really good day...I rested a lot!
My mommy and daddy visited the local NICU today and my mommy left with a lot of unexplainable emotion..
My family was WAY ready for Chapter 1 of my book to end, but sometimes it's hard for my mommy to put this all into words...
She left feeling REALLY happy and relieved that I wasn't at the hospital anymore..and that she wouldn't ever have to pick up the phone to "call in" to see me..
BUT..
She also left feeling kind of sad and a little empty too...she knew that ending Chapter 1 meant that she wouldn't see her good friends very much anymore..these awesome, dedicated people spent one of the most stressful times of life with her and she feels super attached to them...they gave her so much support with me and totally understood what was going on..
She's feeling a little overwhelmed that now she will need to "call" a totally different group of people if I need help and she knows that Nana will be going home soon (unless we can talk Grandpa into getting a home down here - hint, hint) too & she will miss her...
It was just a day of unexplainable emotion..happy, sad and all of the above..(it must be a mommy thing...it's a good thing that I had a "good" day, right?)
She was reminded today of a story that she once heard in the NICU parent hour and then again from her good friend....
Welcome to Holland!! What a beautiful place to be!!
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Sunday, April 17, 2011
DAY OF LIFE 134
Today is Sunday...
I slept pretty good last night and my mommy was only up a "few" times..
My daddy took me again for a lot of the day so my mommy could spend some time with my brother and sister & Nana...
I am pretty stationary on my boppy pillow and my feeding machine, so whomever is watching me is pretty "stationary" with me.
Unfortunately, I don't like much movement, so the stroller is out...the swing and bouncy chair only make me happy for a few minutes...
It was another "boys" day and it was a pretty good day at that...
Had "some" reflux but, overall, it was a better day than yesterday...
So thankful for a "better" day...
We are so blessed and have so much to celebrate!!
I slept pretty good last night and my mommy was only up a "few" times..
My daddy took me again for a lot of the day so my mommy could spend some time with my brother and sister & Nana...
I am pretty stationary on my boppy pillow and my feeding machine, so whomever is watching me is pretty "stationary" with me.
Unfortunately, I don't like much movement, so the stroller is out...the swing and bouncy chair only make me happy for a few minutes...
It was another "boys" day and it was a pretty good day at that...
Had "some" reflux but, overall, it was a better day than yesterday...
So thankful for a "better" day...
We are so blessed and have so much to celebrate!!
DAY OF LIFE 133
Today is Saturday...
My mommy kind of had a melt down today so my daddy hung with me to give my mommy a break from my cares...I am a full time job.
I had reflux for a lot of the day, but my daddy tried to help me the best that he could..
It was a "boys" day..
I am so thankful to be out of the hospital!!
We're all keeping the faith for my total wellness...
My mommy kind of had a melt down today so my daddy hung with me to give my mommy a break from my cares...I am a full time job.
I had reflux for a lot of the day, but my daddy tried to help me the best that he could..
It was a "boys" day..
I am so thankful to be out of the hospital!!
We're all keeping the faith for my total wellness...
Friday, April 15, 2011
DAY OF LIFE 132
Today is Friday..
Had a really fussy day at one end of the house and my brother had a fussy day at the other end as he's fighting a cold. My mommy needs to keep us apart so I stay well..
This has been a tough cold season for my brother and sister..
My daddy drew out for a turkey permit, so he went "scouting" for his big hunt tomorrow...
We also had a little of a scare today because my mommy went to give me my medication for my reflux (Axid) and noticed that the dosage was "different" on the "new" prescription refill than what she had been giving me before..
The "new" bottle said I was supposed to get .5 "ml" but my mommy had been giving me 1/2 "teaspoon" because that is what the last prescription bottle said..
So, she called the pharmacy & the pharmacist admitted that the dosage was typed WRONG on the last prescription bottle.
He was concerned & told my mommy that he needed to do some "research" & would call her back.
My mommy called poison control & found out that she had been overdosing me...giving me 5x the dosage that I should have been getting E-V-E-R-Y single day since 3/28/2011 & today is 4/15/2011. YIKES!!!
Poison control did say that if I was going to get an "overdose," than research didn't show that this was a very dangerous drug for me to get too much of - but he thought it would be a good idea for me to go get "labs" to check my liver & kidney's to see if any damage was done.
BUT...I don't act "sick" - I am just very "cranky" - that's nothing new though..I'm pretty cranky a lot of the time anytime.
My mommy isn't really okay with the idea of more "labs" done - after all, "what" can really be done for me if there is damage...
AND who would really be able to "pinpoint" which drug (since I have had SO SO SO many) really did the "damage" - if there was any damage done anyway.
My mommy never did hear from my Dr.'s office, so I guess we'll see what happens...
I am a real fighter and I am such a miracle baby. Nothing that has happened to me has been able to keep me down...not even an overdose...
Feeling super grateful to be home with my family...AND feeling super grateful that Nana is still here too...
Had a really fussy day at one end of the house and my brother had a fussy day at the other end as he's fighting a cold. My mommy needs to keep us apart so I stay well..
This has been a tough cold season for my brother and sister..
My daddy drew out for a turkey permit, so he went "scouting" for his big hunt tomorrow...
We also had a little of a scare today because my mommy went to give me my medication for my reflux (Axid) and noticed that the dosage was "different" on the "new" prescription refill than what she had been giving me before..
The "new" bottle said I was supposed to get .5 "ml" but my mommy had been giving me 1/2 "teaspoon" because that is what the last prescription bottle said..
So, she called the pharmacy & the pharmacist admitted that the dosage was typed WRONG on the last prescription bottle.
He was concerned & told my mommy that he needed to do some "research" & would call her back.
My mommy called poison control & found out that she had been overdosing me...giving me 5x the dosage that I should have been getting E-V-E-R-Y single day since 3/28/2011 & today is 4/15/2011. YIKES!!!
Poison control did say that if I was going to get an "overdose," than research didn't show that this was a very dangerous drug for me to get too much of - but he thought it would be a good idea for me to go get "labs" to check my liver & kidney's to see if any damage was done.
BUT...I don't act "sick" - I am just very "cranky" - that's nothing new though..I'm pretty cranky a lot of the time anytime.
My mommy isn't really okay with the idea of more "labs" done - after all, "what" can really be done for me if there is damage...
AND who would really be able to "pinpoint" which drug (since I have had SO SO SO many) really did the "damage" - if there was any damage done anyway.
My mommy never did hear from my Dr.'s office, so I guess we'll see what happens...
I am a real fighter and I am such a miracle baby. Nothing that has happened to me has been able to keep me down...not even an overdose...
Feeling super grateful to be home with my family...AND feeling super grateful that Nana is still here too...
Subscribe to:
Posts (Atom)