Today is Friday...
Overall, it was a pretty low-key day...
I am not as refluxy today as I have been - which is a good thing...
Feeling super thankful to be alive!!
I'm Three
Saturday, April 30, 2011
Thursday, April 28, 2011
DAY OF LIFE 145
Today is Thursday...
I had a pretty good day..
I still have this danged cold, but it's not as bad as it was a few days ago..
Today, the Physical Therapist came to visit me and "tested" me..
She thinks that my neck strength is very much like an "new born" baby's would be, but the lower half of my body muscle (legs, etc..) are very strong and tight..
I am a mystery for sure..
My "translocation" has everyone "wondering" what life holds for me...
She gave my mommy and daddy some great information on "how" to help me develop to my full capacity...
I was doing really well on my non-refluxing, but after she left, I started to "wretch" some..I think some of the movement "moves" things around in me, and I can't help but reflux..
I had quite a bit of "older" blood in my g-tube today too..
My mommy & daddy know that I am bleeding "somewhere" in my body, but don't know "where" and they don't want to take me back to the hospital for more testing...
They wonder if I could have bleeding ulcers?
They will talk to my Doctor again about this, but thank goodness my Doctor is "conservative" when it comes to testing..
I had my first FULL submersion bath today (since my g-tube surgery.) All of my other baths have been sponge baths because we had to wait 2 months for it to heal.
I didn't like it..not one little bit..
It's kind of a bummer too because I used to LOVE baths, before the g-tube went in...
Overall, it's been a great day and I am so thankful to be alive and growing!!
I am very blessed indeed!!
I had a pretty good day..
I still have this danged cold, but it's not as bad as it was a few days ago..
Today, the Physical Therapist came to visit me and "tested" me..
She thinks that my neck strength is very much like an "new born" baby's would be, but the lower half of my body muscle (legs, etc..) are very strong and tight..
I am a mystery for sure..
My "translocation" has everyone "wondering" what life holds for me...
She gave my mommy and daddy some great information on "how" to help me develop to my full capacity...
I was doing really well on my non-refluxing, but after she left, I started to "wretch" some..I think some of the movement "moves" things around in me, and I can't help but reflux..
I had quite a bit of "older" blood in my g-tube today too..
My mommy & daddy know that I am bleeding "somewhere" in my body, but don't know "where" and they don't want to take me back to the hospital for more testing...
They wonder if I could have bleeding ulcers?
They will talk to my Doctor again about this, but thank goodness my Doctor is "conservative" when it comes to testing..
I had my first FULL submersion bath today (since my g-tube surgery.) All of my other baths have been sponge baths because we had to wait 2 months for it to heal.
I didn't like it..not one little bit..
It's kind of a bummer too because I used to LOVE baths, before the g-tube went in...
Overall, it's been a great day and I am so thankful to be alive and growing!!
I am very blessed indeed!!
DAY OF LIFE 144
What a difference 24 hours makes!
My g-tube has QUIT leaking..my mommy & daddy were able to fix it withOUT taking me into the Doctor..this is great!!
I still have a cold, but I am starting to get better...
AND..
My reflux, wretching motions are almost non-existent...
This is a great thing for my mommy & daddy to see!
I spent a lot of time with my Nana today as my mommy and daddy had work they had to do...
Overall...it was a great day!!
My g-tube has QUIT leaking..my mommy & daddy were able to fix it withOUT taking me into the Doctor..this is great!!
I still have a cold, but I am starting to get better...
AND..
My reflux, wretching motions are almost non-existent...
This is a great thing for my mommy & daddy to see!
I spent a lot of time with my Nana today as my mommy and daddy had work they had to do...
Overall...it was a great day!!
Wednesday, April 27, 2011
DAY OF LIFE 143
Today is Tuesday and I cried a lot of the night.
My daddy awoke to find me super COLD and saw that my g-tube was leaking a lot of liquid out of it and I was soaked from the formula.
This meant the day started crazy because my daddy has a meeting and my brother and sister have to get ready for school and I had to be fixed so I would quit "leaking" and WE ARE SO THANKFUL THAT NANA IS STILL HERE..she is so helpful and saves our bacon every day..
My mommy fixed my tube but didn't fix it good enough because I ended up getting soaked 3 more times today. It's really important that they NOT leave this on my skin because it is "formula" but it has "stomach acid" in it too, so it can eat my skin if it's not cleaned off right away.
For some reason, she would pull the water OUT of the inner balloon and put more back IN, but it wasn't "holding" the tube in tight enough to stop the leaking.
So..she called her new best friends (my Doctor's office) and they suggested to do what she had already done and then bring me in tomorrow.
So, she tried it one more time tonight & prays that it works..I have to eat and if it's all leaking "out" then, I am hungry and she is constantly cleaning, taping, un-taping, re-taping..(well, you get the idea..)
She is very thankful for the g-tube class that the bigger hospital offered her while I was there..this was very helpful..
I am also still thankful for tylenol and ibuprofen..
These help me rest and get better..
My mommy had a crying melt-down tonight on my daddy because I keep her very busy..sometimes she feels a little overwhelmed and just needs to let it out..
Thank goodness that my daddy is a patient guy..he is a good daddy...
We are all keeping the faith for my total wellness..every single day...
My daddy awoke to find me super COLD and saw that my g-tube was leaking a lot of liquid out of it and I was soaked from the formula.
This meant the day started crazy because my daddy has a meeting and my brother and sister have to get ready for school and I had to be fixed so I would quit "leaking" and WE ARE SO THANKFUL THAT NANA IS STILL HERE..she is so helpful and saves our bacon every day..
My mommy fixed my tube but didn't fix it good enough because I ended up getting soaked 3 more times today. It's really important that they NOT leave this on my skin because it is "formula" but it has "stomach acid" in it too, so it can eat my skin if it's not cleaned off right away.
For some reason, she would pull the water OUT of the inner balloon and put more back IN, but it wasn't "holding" the tube in tight enough to stop the leaking.
So..she called her new best friends (my Doctor's office) and they suggested to do what she had already done and then bring me in tomorrow.
So, she tried it one more time tonight & prays that it works..I have to eat and if it's all leaking "out" then, I am hungry and she is constantly cleaning, taping, un-taping, re-taping..(well, you get the idea..)
She is very thankful for the g-tube class that the bigger hospital offered her while I was there..this was very helpful..
I am also still thankful for tylenol and ibuprofen..
These help me rest and get better..
My mommy had a crying melt-down tonight on my daddy because I keep her very busy..sometimes she feels a little overwhelmed and just needs to let it out..
Thank goodness that my daddy is a patient guy..he is a good daddy...
We are all keeping the faith for my total wellness..every single day...
DAY OF LIFE 142
Today is Monday.
I had a very hard night & I struggled to breathe all night long.
My mommy was concerned because I had a bluish tint around my mouth and I was breathing "in" and "out" like I had just ran a marathon.
I was also still coughing a hoarse "dog" bark cough.
So...we went to see my Doctor.
(I almost wonder if my Doctor thinks my mommy is HYPER-SENSITIVE and worries too much, but she would rather be safe than sorry.)
It took about 40 minutes to get me packed up and ready to go and then when we got to the Doctor's office, I was calm.
The tylenol kicked in and I wasn't breathing fast anymore.
My mommy couldn't believe it as I had struggled ALL NIGHT LONG and now a trip to the Doctor's office has cured me.
The Doctor did listen to me and heard "airway" congestion NOT "lung" congestion. I always have airway problems, and the Doctor said my "cold" didn't help me breathing issues, so he prescribed a steroid.
He's a good Doctor and he has quickly become a good resource for my mommy & daddy.
So thankful that I have good medical people taking care of me..
I am also thankful for tylenol AND ibuprofen too!!
I had a very hard night & I struggled to breathe all night long.
My mommy was concerned because I had a bluish tint around my mouth and I was breathing "in" and "out" like I had just ran a marathon.
I was also still coughing a hoarse "dog" bark cough.
So...we went to see my Doctor.
(I almost wonder if my Doctor thinks my mommy is HYPER-SENSITIVE and worries too much, but she would rather be safe than sorry.)
It took about 40 minutes to get me packed up and ready to go and then when we got to the Doctor's office, I was calm.
The tylenol kicked in and I wasn't breathing fast anymore.
My mommy couldn't believe it as I had struggled ALL NIGHT LONG and now a trip to the Doctor's office has cured me.
The Doctor did listen to me and heard "airway" congestion NOT "lung" congestion. I always have airway problems, and the Doctor said my "cold" didn't help me breathing issues, so he prescribed a steroid.
He's a good Doctor and he has quickly become a good resource for my mommy & daddy.
So thankful that I have good medical people taking care of me..
I am also thankful for tylenol AND ibuprofen too!!
DAY OF LIFE 141
Today is EASTER Sunday.
What a beautiful day outside,
My mommy and my daddy didn't get one ounce of sleep last night because I was so sick.
I had to be suctioned out several times. Thank goodness for this hospital grade suction machine.
I was very unhappy & cried most of the night.
My mommy & Nana missed the early morning service because my mommy was so tired...but, they were able to go in the evening.
We had an Easter Egg hunt while I slept.
My brother & sister had fun!!
My Aunt & Uncle came for dinner.
Even though I didn't feel very good, the fact that I am alive & home is a total miracle & blessing.
My family is so grateful.
What a beautiful day outside,
My mommy and my daddy didn't get one ounce of sleep last night because I was so sick.
I had to be suctioned out several times. Thank goodness for this hospital grade suction machine.
I was very unhappy & cried most of the night.
My mommy & Nana missed the early morning service because my mommy was so tired...but, they were able to go in the evening.
We had an Easter Egg hunt while I slept.
My brother & sister had fun!!
My Aunt & Uncle came for dinner.
Even though I didn't feel very good, the fact that I am alive & home is a total miracle & blessing.
My family is so grateful.
DAY OF LIFE 140
Today is Saturday and I officially have my first cold since I left the hospital.
My family has been so careful with me - making sure to wash their hands all of the time & I haven't had many visitors.
Now I really don't feel well.
I am still refluxing and now I am coughing "croupy" like & I am very stuffy too. I already have a small airway that makes breathing hard, but it's extra hard
My mommy & daddy are doing everything they can to help me be comfortable (tylenol, humidifier, nebulizer, axid, prevacid, miralax, suction machine, nose drops, boppy pillow, feeding machine, murphy drip...whew!!
At least I am at HOME and I love this!!
Super thankful!!
My family has been so careful with me - making sure to wash their hands all of the time & I haven't had many visitors.
Now I really don't feel well.
I am still refluxing and now I am coughing "croupy" like & I am very stuffy too. I already have a small airway that makes breathing hard, but it's extra hard
My mommy & daddy are doing everything they can to help me be comfortable (tylenol, humidifier, nebulizer, axid, prevacid, miralax, suction machine, nose drops, boppy pillow, feeding machine, murphy drip...whew!!
At least I am at HOME and I love this!!
Super thankful!!
Friday, April 22, 2011
DAY OF LIFE 139
Today is Friday...
My brother and sister were "off" from school today and they spent quite a bit of time with me.
I like my new pak & play because I can be "wheeled" to be with my family in every room in the house very easily with my feeding machine..
My mommy had a meeting at work today and then her and my Nana went to the Quilt Guild & saw some beautiful quilts made by very talented people...
My daddy hung out with me and I like that..
My brother and sister got to dye eggs tonight too & they had fun with my mommy and Nana and daddy went to "scout" for turkey's...
I am still pretty uncomfortable..
I cried and squirmed a lot today, so my mommy called the bigger hospital where I had my surgeries & they suggested that she withdraw "1 cc" of water out of my g-tube (my mommy had put 5 cc's in last night after it started to leak formula, and "5 cc's" may have made my belly too "full." They said that that the ONE extra cc of pressure might be causing me some pain in my belly. It's hard to know if this is why I am so cranky, but it's worth a shot taking some water out to see if this helped. It's also hard to believe that "1 cc" of water could make that much of a difference.)
Taking that "small" amount out did seem to help, but only a little. I act like I am in pain most times I am awake. I arch back as far as I can go and I get as "stiff" as a board. The only thing that makes me get "out" of this extension position is a binky.
My family is very thankful that I have "something" that can soothe me.
A few other observations from my family are that I am still looking "up" quite a bit, I startle very easily if something touches my eye(s) and/or mouth & I have an "interesting" jerking motion like I am trying to jump "up" out of my bed - but then when my family tries to "sit" me up, I cry & "extend" my body backwards as far as I can until they lay me back down and will "miss" a couple breath's and then I act like I am choking on my own saliva when I start breathing again.
My mommy "questions" if what she is "seeing" with me is indeed something to be concerned about OR if she is just hyper-sensitive to my behavior because she spent so much time in the hospital with me and there has been so much "concern" and "uncertainty" with me since I was born.
She second guess' herself everyday..
I am "writing my own story" for sure AND we are all so thankful that I am HOME and able to write this magnificent story!!
Keeping the faith...
My brother and sister were "off" from school today and they spent quite a bit of time with me.
I like my new pak & play because I can be "wheeled" to be with my family in every room in the house very easily with my feeding machine..
My mommy had a meeting at work today and then her and my Nana went to the Quilt Guild & saw some beautiful quilts made by very talented people...
My daddy hung out with me and I like that..
My brother and sister got to dye eggs tonight too & they had fun with my mommy and Nana and daddy went to "scout" for turkey's...
I am still pretty uncomfortable..
I cried and squirmed a lot today, so my mommy called the bigger hospital where I had my surgeries & they suggested that she withdraw "1 cc" of water out of my g-tube (my mommy had put 5 cc's in last night after it started to leak formula, and "5 cc's" may have made my belly too "full." They said that that the ONE extra cc of pressure might be causing me some pain in my belly. It's hard to know if this is why I am so cranky, but it's worth a shot taking some water out to see if this helped. It's also hard to believe that "1 cc" of water could make that much of a difference.)
Taking that "small" amount out did seem to help, but only a little. I act like I am in pain most times I am awake. I arch back as far as I can go and I get as "stiff" as a board. The only thing that makes me get "out" of this extension position is a binky.
My family is very thankful that I have "something" that can soothe me.
A few other observations from my family are that I am still looking "up" quite a bit, I startle very easily if something touches my eye(s) and/or mouth & I have an "interesting" jerking motion like I am trying to jump "up" out of my bed - but then when my family tries to "sit" me up, I cry & "extend" my body backwards as far as I can until they lay me back down and will "miss" a couple breath's and then I act like I am choking on my own saliva when I start breathing again.
My mommy "questions" if what she is "seeing" with me is indeed something to be concerned about OR if she is just hyper-sensitive to my behavior because she spent so much time in the hospital with me and there has been so much "concern" and "uncertainty" with me since I was born.
She second guess' herself everyday..
I am "writing my own story" for sure AND we are all so thankful that I am HOME and able to write this magnificent story!!
Keeping the faith...
Thursday, April 21, 2011
DAY OF LIFE 138
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 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...
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...
Thursday, April 14, 2011
DAY OF LIFE 131
Well..I had a pretty restless night...
I was pretty squirmy and in pain...
Today was just an "okay" day...I tried to rest, but I couldn't get comfortable..
My mommy, daddy & Nana take shifts with me because I need to have someone with me all the time...
I am famous for arching backwards so far that I am almost rolling over...
My mommy is a little scared of what will happen when I do roll over because my g-tube has been so sensitive..I guess we will see..
I am still looking UP most of the day, but I did "look" at an object today and smiled intentionally..
These are all great things...
It's the small things in life, right? :)
I was pretty squirmy and in pain...
Today was just an "okay" day...I tried to rest, but I couldn't get comfortable..
My mommy, daddy & Nana take shifts with me because I need to have someone with me all the time...
I am famous for arching backwards so far that I am almost rolling over...
My mommy is a little scared of what will happen when I do roll over because my g-tube has been so sensitive..I guess we will see..
I am still looking UP most of the day, but I did "look" at an object today and smiled intentionally..
These are all great things...
It's the small things in life, right? :)
DAY OF LIFE 130
Today is Wednesday..
WHAT A GREAT DAY I HAD, until the evening when I started my reflux episodes..
My mommy can't "pin point" exactly "what" makes this happen...
Sometimes it's movement..
Sometimes it's me being mad..
Sometimes it's positional..
Sometimes it's time of day..
I'm a mystery for sure...
BUT..
We'll take every good moment we can..
We're thankful for it ALL!!
My mommy and daddy got asked to talk at a luncheon next week about our experience at the local NICU here. They're pretty excited to share my story because I'm pretty much a miracle!!
WHAT A GREAT DAY I HAD, until the evening when I started my reflux episodes..
My mommy can't "pin point" exactly "what" makes this happen...
Sometimes it's movement..
Sometimes it's me being mad..
Sometimes it's positional..
Sometimes it's time of day..
I'm a mystery for sure...
BUT..
We'll take every good moment we can..
We're thankful for it ALL!!
My mommy and daddy got asked to talk at a luncheon next week about our experience at the local NICU here. They're pretty excited to share my story because I'm pretty much a miracle!!
Tuesday, April 12, 2011
DAY OF LIFE 129
Well..I didn't sleep too well last night because of all my reflux, but overall, today was a better day..
Less movement and more sleep make for a slightly happier baby..
Today I got a visitor from a lady whose job it is to just "play" with me..
She brings me toys and tries to get me to respond to them..
She "played" with me for quite awhile today and based on my "performance," we made goals. I look "up" most of the time and I don't focus on anything specific...and noone is sure "what" it is that I am looking at...
GOAL #1 will be to focus on something for just a few minutes...
This is a good goal since I am not doing anything like this...
My mommy feels that I will do this with flying colors because I have come so far already...I guess I just like to do things in my own time..
The lady also suggested that next time we go back to the bigger hospital we should go to have my eyes tested. She is concerned about eye structure because I am sort of "off" in my own land and not much will get my attention...my eyes may need some work done...When I "look" at things, they aren't sure "what" I am processing for sure...
They keep saying it could be neurological, but my MRI came back just fine..
I am a mystery and so we will take...One thing at a time (what my mommy told her...)
First things first...We will work on getting my feeding situation under control and OFF a 24-hour feeding schedule, and then we will take on another challenge...
Taking these "new" situations head on is the only way we know how to do these types of things...
It's pretty cool to have a family who takes my with all of my "uniqueness" and runs with it...
I'm a pretty blessed child to have such a support system...
Less movement and more sleep make for a slightly happier baby..
Today I got a visitor from a lady whose job it is to just "play" with me..
She brings me toys and tries to get me to respond to them..
She "played" with me for quite awhile today and based on my "performance," we made goals. I look "up" most of the time and I don't focus on anything specific...and noone is sure "what" it is that I am looking at...
GOAL #1 will be to focus on something for just a few minutes...
This is a good goal since I am not doing anything like this...
My mommy feels that I will do this with flying colors because I have come so far already...I guess I just like to do things in my own time..
The lady also suggested that next time we go back to the bigger hospital we should go to have my eyes tested. She is concerned about eye structure because I am sort of "off" in my own land and not much will get my attention...my eyes may need some work done...When I "look" at things, they aren't sure "what" I am processing for sure...
They keep saying it could be neurological, but my MRI came back just fine..
I am a mystery and so we will take...One thing at a time (what my mommy told her...)
First things first...We will work on getting my feeding situation under control and OFF a 24-hour feeding schedule, and then we will take on another challenge...
Taking these "new" situations head on is the only way we know how to do these types of things...
It's pretty cool to have a family who takes my with all of my "uniqueness" and runs with it...
I'm a pretty blessed child to have such a support system...
DAY OF LIFE 128
Today is Monday...
It was a WAY better day than yesterday because I didn't need to go back to the hospital..
My mommy & Nana took me on a walk today and I cried the whole time...I do NOT like my car seat and I did NOT like going on a walk...
When we got back, my reflux was pretty severe again...
My mommy felt bad because she wasn't sure if my reflux was worsened by the "movement" of the walk OR if it was because I was so upset that I cried and cried for so long..
Either way, even my Prevacid didn't help me..
This darned reflux makes me so archy and uncomfortable...
BUT...I am way happier being at HOME with my reflux instead of at the hospital...
It's always a good day that I am at home...
Super thankful for that!!!
It was a WAY better day than yesterday because I didn't need to go back to the hospital..
My mommy & Nana took me on a walk today and I cried the whole time...I do NOT like my car seat and I did NOT like going on a walk...
When we got back, my reflux was pretty severe again...
My mommy felt bad because she wasn't sure if my reflux was worsened by the "movement" of the walk OR if it was because I was so upset that I cried and cried for so long..
Either way, even my Prevacid didn't help me..
This darned reflux makes me so archy and uncomfortable...
BUT...I am way happier being at HOME with my reflux instead of at the hospital...
It's always a good day that I am at home...
Super thankful for that!!!
Monday, April 11, 2011
DAY OF LIFE 127
Today is Sunday.
It was a hard day. I had reflux all night & I didn't sleep at all.
My breathing is very labored.
I am working very hard at the base of my neck to get air "in" and it sounds "wet" and "croupy" (instead of dry & striderous, like it normally does)
My mommy called my pediatricians office & they thought I needed to be seen right away just to make sure the "wet" & "croupy" sound wasn't reflux "in" my lungs - like two times before when I aspirated & caught pneumonia.
So...I ended up going to the Emergency Room.
My mommy really didn't want to take me in because she knew that they may want to run more tests on me & she did not want that.
Thank goodness Nana is still here to help us & offer moral support to my family.
My mommy knew that I needed to be suctioned out because my reflux was "stuck" at the base of my neck making it hard for me to breathe, but she also wanted to "see" an x-ray of my lungs just to make sure that there wasn't any fluid in them. (SIDE NOTE: My mommy doesn't like suctioning AT ALL, but there are times for it for sure..this was one of those times. She just wished that she had the equipment at home so she could have done it for me.)
These were the only two procedures that she was "okay" happening to me.
Thankfully, I got a ER Doctor who is super smart. He listened to me breathe & totally agreed with my mommy...yea, my mommy knows me pretty good.
During my ER visit, one of my favorite Neonatologist's drove over from the NICU just to see me. He knew exactly what I needed.
I am super blessed to have such dedicated medical professionals in my life. I am not even in the NICU anymore, but they haven't forgotten about me & care so much to come see when I'm not feeling well.
My life may not be "exactly" what my mommy & daddy had planned for me, but they are meeting the coolest people & wouldn't trade me for anything.
This is our "new" normal life - (BUT..who really decides what "normal" is anyway?)
We do, that's who. :-)
It was a hard day. I had reflux all night & I didn't sleep at all.
My breathing is very labored.
I am working very hard at the base of my neck to get air "in" and it sounds "wet" and "croupy" (instead of dry & striderous, like it normally does)
My mommy called my pediatricians office & they thought I needed to be seen right away just to make sure the "wet" & "croupy" sound wasn't reflux "in" my lungs - like two times before when I aspirated & caught pneumonia.
So...I ended up going to the Emergency Room.
My mommy really didn't want to take me in because she knew that they may want to run more tests on me & she did not want that.
Thank goodness Nana is still here to help us & offer moral support to my family.
My mommy knew that I needed to be suctioned out because my reflux was "stuck" at the base of my neck making it hard for me to breathe, but she also wanted to "see" an x-ray of my lungs just to make sure that there wasn't any fluid in them. (SIDE NOTE: My mommy doesn't like suctioning AT ALL, but there are times for it for sure..this was one of those times. She just wished that she had the equipment at home so she could have done it for me.)
These were the only two procedures that she was "okay" happening to me.
Thankfully, I got a ER Doctor who is super smart. He listened to me breathe & totally agreed with my mommy...yea, my mommy knows me pretty good.
During my ER visit, one of my favorite Neonatologist's drove over from the NICU just to see me. He knew exactly what I needed.
I am super blessed to have such dedicated medical professionals in my life. I am not even in the NICU anymore, but they haven't forgotten about me & care so much to come see when I'm not feeling well.
My life may not be "exactly" what my mommy & daddy had planned for me, but they are meeting the coolest people & wouldn't trade me for anything.
This is our "new" normal life - (BUT..who really decides what "normal" is anyway?)
We do, that's who. :-)
Saturday, April 9, 2011
DAY OF LIFE 126
Today is Saturday and it has been A VERY HARD DAY..
I didn't sleep at all last night..
I cried my soft "hurt" cry all night long..I am in pain..
I refluxed over and over and over today...
It is NOT coming "up" and "out" like it was before my surgery, but my airway sounds like I have "croupe" and when I breathe I sound like I am "gasping" for air. I am "retracting" pretty hard today..
It makes my family so sad to see me in such pain and they can't do anything to help me besides giving me my Prevacid and Zantac and sitting with me to try and comfort me...
I guess everyone has hard days...
On a different note, my sister is feeling better...YEA!!
My daddy, brother and Nana "ran" in a race this morning and my Nana took 3rd place in her division and came home with a metal!!
Way to go guys!!
I can't wait for the day that I can go out and run beside them..
AND...I will do just that..you can count on it!!
I didn't sleep at all last night..
I cried my soft "hurt" cry all night long..I am in pain..
I refluxed over and over and over today...
It is NOT coming "up" and "out" like it was before my surgery, but my airway sounds like I have "croupe" and when I breathe I sound like I am "gasping" for air. I am "retracting" pretty hard today..
It makes my family so sad to see me in such pain and they can't do anything to help me besides giving me my Prevacid and Zantac and sitting with me to try and comfort me...
I guess everyone has hard days...
On a different note, my sister is feeling better...YEA!!
My daddy, brother and Nana "ran" in a race this morning and my Nana took 3rd place in her division and came home with a metal!!
Way to go guys!!
I can't wait for the day that I can go out and run beside them..
AND...I will do just that..you can count on it!!
DAY OF LIFE 125
Today is Friday..
It was a pretty good day..
My sister is still feeling pretty crummy, so she is still on one end of the house and I am on the other.
My mommy and Nana spent the whole day with me as I stayed on my boppy pillow. I love my head massaged and my legs and feet too. My massages are one of my favorite parts of the day.
My daddy & brother watched me tonight so the girls could go to a movie with my Nurse friend from the NICU. They went to see "Soul Surfer"...what an inspiring girl who has, no matter the trials she's been through, kept a super positive attitude AND her family is pretty amazing too!!
It's funny how life can take sharp twists and turns...just like an amusement roller coaster ride...
Hang on tight, never let go AND don't forget to open your eyes!!
It was a pretty good day..
My sister is still feeling pretty crummy, so she is still on one end of the house and I am on the other.
My mommy and Nana spent the whole day with me as I stayed on my boppy pillow. I love my head massaged and my legs and feet too. My massages are one of my favorite parts of the day.
My daddy & brother watched me tonight so the girls could go to a movie with my Nurse friend from the NICU. They went to see "Soul Surfer"...what an inspiring girl who has, no matter the trials she's been through, kept a super positive attitude AND her family is pretty amazing too!!
It's funny how life can take sharp twists and turns...just like an amusement roller coaster ride...
Hang on tight, never let go AND don't forget to open your eyes!!
Thursday, April 7, 2011
DAY OF LIFE 124
Today is Thursday..
It is a very interesting day for sure!
I didn't sleep very well at all last night.
I slept on & off until 3:30 this morning and then I wanted out of my bed, so I cried & mommy came to get me. (She knows it's not good to come to me every time I cry, but she can't help herself. She has seen me go through too much in my life to leave me crying. I am sure I will use this to my advantage - he he.)
About that same time, my mommy heard my Nana "up" with my sister who was throwing up.
My poor sister..she has the flu...bad....
She threw up SO many times today and was in a lot of pain, so she stayed at ONE of end the house on the couch with my Nana while my mommy kept me as far away as possible on the other end of the house.
See, since my Nissen Surgery, I can't throw up very well or burp very well at all without some major force, so my mommy can't afford for me to get the flu. The flu is miserable, but a person WITH a Nissen AND the flu can be way more miserable...
My mommy felt so bad that she couldn't take care of my sister AND me at the same time. :-(
On a different note..
The home health care nurse came today and I now weight 8 pounds 8.5 ounces. I am a big boy from when I was born at 3 pounds 14 ounces.
The nurse told my mommy that she needed to not be so "stressed" out about me, because I am doing so great!
That is good advice from someone who has only met me twice, but it's easier "said" than "done" for my mommy. She's spent A LOT of time with me in the NICU & noone knows me like she does or what my patterns are...I guess my mommy is a little hyper sensitive, but I guess she thinks that she has "earned" the right to be a little hyper-sensitive. She's a pretty "down-to-earth" kind of person and as I grow and adjust, so will her stress level.
(I think the nurse saw that my mommy was in sweats with crazy, "no sleep" hair, so maybe this is why she gave her advice.)
BUT...
My mommy has waited for a long time to wear sweats and have crazy "no sleep" hair" so it's all good...it's all good..
We are super blessed...I am very thankful for my Nana today AND for a daddy who is supportive of my mommy staying home with me and wearing sweats and having crazy "no sleep" hair!!
It is a very interesting day for sure!
I didn't sleep very well at all last night.
I slept on & off until 3:30 this morning and then I wanted out of my bed, so I cried & mommy came to get me. (She knows it's not good to come to me every time I cry, but she can't help herself. She has seen me go through too much in my life to leave me crying. I am sure I will use this to my advantage - he he.)
About that same time, my mommy heard my Nana "up" with my sister who was throwing up.
My poor sister..she has the flu...bad....
She threw up SO many times today and was in a lot of pain, so she stayed at ONE of end the house on the couch with my Nana while my mommy kept me as far away as possible on the other end of the house.
See, since my Nissen Surgery, I can't throw up very well or burp very well at all without some major force, so my mommy can't afford for me to get the flu. The flu is miserable, but a person WITH a Nissen AND the flu can be way more miserable...
My mommy felt so bad that she couldn't take care of my sister AND me at the same time. :-(
On a different note..
The home health care nurse came today and I now weight 8 pounds 8.5 ounces. I am a big boy from when I was born at 3 pounds 14 ounces.
The nurse told my mommy that she needed to not be so "stressed" out about me, because I am doing so great!
That is good advice from someone who has only met me twice, but it's easier "said" than "done" for my mommy. She's spent A LOT of time with me in the NICU & noone knows me like she does or what my patterns are...I guess my mommy is a little hyper sensitive, but I guess she thinks that she has "earned" the right to be a little hyper-sensitive. She's a pretty "down-to-earth" kind of person and as I grow and adjust, so will her stress level.
(I think the nurse saw that my mommy was in sweats with crazy, "no sleep" hair, so maybe this is why she gave her advice.)
BUT...
My mommy has waited for a long time to wear sweats and have crazy "no sleep" hair" so it's all good...it's all good..
We are super blessed...I am very thankful for my Nana today AND for a daddy who is supportive of my mommy staying home with me and wearing sweats and having crazy "no sleep" hair!!
DAY OF LIFE 123
Today was a pretty good day..a day of rest!!
I am still hooked up to my feeding tube so my "place of choice" is propped up on my boppy in the game room on the floor.
I do NOT like my stroller or my car seat at all.
My mommy was trying to figure out a way to "cart" me around the house with all of my "stuff" so I can get out of this room & off the floor, but I'm way happier just on my boppy right now with minimal movement (a lot of movement makes me reflux...)
BUT..I am thankful that I am keeping my reflux "in" my body...I am WAAYY better than I used to be...
Lots of stuff to be thankful for!!
I am still hooked up to my feeding tube so my "place of choice" is propped up on my boppy in the game room on the floor.
I do NOT like my stroller or my car seat at all.
My mommy was trying to figure out a way to "cart" me around the house with all of my "stuff" so I can get out of this room & off the floor, but I'm way happier just on my boppy right now with minimal movement (a lot of movement makes me reflux...)
BUT..I am thankful that I am keeping my reflux "in" my body...I am WAAYY better than I used to be...
Lots of stuff to be thankful for!!
Tuesday, April 5, 2011
DAY OF LIFE 122
Today is Tuesday...it ended on a great note of sleep, sleep and more sleep...
I was pretty cranky for the first part of the day..this is my fussy time for sure...
Today was my "hearing test." SIDE NOTE: I have already had two other "attempts" at this test while I was at the bigger hospital, but during the test, they wanted me to stay "still" and I didn't like to have people put things "into" my ear, so I never would stay "still"...SO..I never "officially" passed the test..(my mommy was told the state is "requiring" that I get one??)
My mommy has witnessed me startle very easily anytime there is a noise, so she knows that my hearing is JUST FINE, so this is more of a formality.
It took my mommy about 45 minutes to even get me ready to go with all of my medical "stuff" and THANK GOODNESS NANA is here still. (She helps us so much.)
I am not a very good traveler because I don't love my car seat.
After 45 minutes at my appointment, they were able to test my right ear and I am happy to report that it is all "normal."
BUT..when they went to test my left ear, I started to cry and cry and cry and scream (very quiet "scream" for me.)
The Doctor looked inside of my ear and said that it looks totally normal, He said that he's seen babies "cry" and then "settle" down before, but I am the first baby that he saw behave "in pain" like this...
I am always full of surprises..
Based on my behavior, my mommy knew this thing in my ear was hurting really badly, so after 8 attempts of trying to get the thing in my left ear, she asked him to stop and give me a break.
It was then decided that I would have to come back a different day to get the left ear done..(as we left, they scheduled me with a "different" Doctor for next week..not "sure" why, but maybe I'll have better luck with the next try..)
When I got home, I slept AND slept AND slept AND slept.
My mommy has never seen me sleep like this before (except when I was totally zonked out with sedation after my surgery.)
I guess this wore me out today...
A friend of my mommy's sent her a message that made her feel happy...her friend said that she was "happy" to hear that my mommy was "driving" me to the Doctor instead of me still "being" at the hospital.
She is SO SO RIGHT!! My life is so much better to be here at home.
I am a happy boy!!
Feeling pretty grateful for all of our blessings!!
I was pretty cranky for the first part of the day..this is my fussy time for sure...
Today was my "hearing test." SIDE NOTE: I have already had two other "attempts" at this test while I was at the bigger hospital, but during the test, they wanted me to stay "still" and I didn't like to have people put things "into" my ear, so I never would stay "still"...SO..I never "officially" passed the test..(my mommy was told the state is "requiring" that I get one??)
My mommy has witnessed me startle very easily anytime there is a noise, so she knows that my hearing is JUST FINE, so this is more of a formality.
It took my mommy about 45 minutes to even get me ready to go with all of my medical "stuff" and THANK GOODNESS NANA is here still. (She helps us so much.)
I am not a very good traveler because I don't love my car seat.
After 45 minutes at my appointment, they were able to test my right ear and I am happy to report that it is all "normal."
BUT..when they went to test my left ear, I started to cry and cry and cry and scream (very quiet "scream" for me.)
The Doctor looked inside of my ear and said that it looks totally normal, He said that he's seen babies "cry" and then "settle" down before, but I am the first baby that he saw behave "in pain" like this...
I am always full of surprises..
Based on my behavior, my mommy knew this thing in my ear was hurting really badly, so after 8 attempts of trying to get the thing in my left ear, she asked him to stop and give me a break.
It was then decided that I would have to come back a different day to get the left ear done..(as we left, they scheduled me with a "different" Doctor for next week..not "sure" why, but maybe I'll have better luck with the next try..)
When I got home, I slept AND slept AND slept AND slept.
My mommy has never seen me sleep like this before (except when I was totally zonked out with sedation after my surgery.)
I guess this wore me out today...
A friend of my mommy's sent her a message that made her feel happy...her friend said that she was "happy" to hear that my mommy was "driving" me to the Doctor instead of me still "being" at the hospital.
She is SO SO RIGHT!! My life is so much better to be here at home.
I am a happy boy!!
Feeling pretty grateful for all of our blessings!!
Monday, April 4, 2011
DAY OF LIFE 121
Today is Monday..It was a very good day...
Crazy day around my house..especially now that I am home and my mommy isn't getting much sleep, but, life still goes on..
THANK GOODNESS my Nana is still here..
I was pretty fussy in the morning again, crying and crying, but in the afternoon, I felt better and had a pretty good "calm" night..I even smiled a few times..
It's the "little" things that are so great!
I had some quality time with my brother and sister too. I think my brother is really starting to "bond" with me.
We had our friend Ron over for dinner and he met me for the first time..I sure like him. We missed his wife though...
Then, the coolest thing happened around bedtime...
My Uncle drove my Aunt here (with their four kids) and brought our family FOUR WHOLE MEALS - TOTALLY COMPLETE and ready to "heat and serve."
My Aunt cooked for hours to get this ready for my family...my mommy felt so grateful..
We have so much to be thankful for and we are so blessed to have such awesome people in our lives!!
Crazy day around my house..especially now that I am home and my mommy isn't getting much sleep, but, life still goes on..
THANK GOODNESS my Nana is still here..
I was pretty fussy in the morning again, crying and crying, but in the afternoon, I felt better and had a pretty good "calm" night..I even smiled a few times..
It's the "little" things that are so great!
I had some quality time with my brother and sister too. I think my brother is really starting to "bond" with me.
We had our friend Ron over for dinner and he met me for the first time..I sure like him. We missed his wife though...
Then, the coolest thing happened around bedtime...
My Uncle drove my Aunt here (with their four kids) and brought our family FOUR WHOLE MEALS - TOTALLY COMPLETE and ready to "heat and serve."
My Aunt cooked for hours to get this ready for my family...my mommy felt so grateful..
We have so much to be thankful for and we are so blessed to have such awesome people in our lives!!
Sunday, April 3, 2011
DAY OF LIFE 120
Mornings are HARD...
I guess some babies cry and scream at night, but I do it in the morning..my mommy thinks I am in pain..then when I am upset, my airway sounds like air is having a hard time getting through, so I make a sound when I breathe..
My cry is getting a "tiny bit" louder, but it's still very soft and I can't be heard unless you are in the same room with me, so I am rarely left by myself..I am a full time job - - - around the clock. (My parents friend gave them a monitor for me, but it's not working right now, so mommy and daddy are trying to fix it.)
The reason my mommy thinks I am in pain is because I have a certain cry that is a "pain" cry..it is the same cry that I had when I was in the hospital and I was getting a poke or a tube.
I am hooked up to my feeding machine 23 hours a day (see picture) and I also have a "murphy vent" (see picture) that allows my stomach to "vent" because I can't burp very easily since my Nissen surgery and I need to get the air out some way.
As you can see, my set-up is pretty limited so I can't be moved or held very easily...
Most of my day is spent in our game room with me laying on my "boppy" pillow..
My family tries to entertain me, read to me, sing to me and show me things, but I'm just very fussy...
Our goal this week is to increase my food so that I am NOT on my feeding tube all day long..the sooner I can "un-hook" from this machine, the better it will be for my development...
One thing at a time...one thing at a time..
BUT...
My quality of life is way better here at home than it ever was in the hospital, and we are all very grateful for that!!
I guess some babies cry and scream at night, but I do it in the morning..my mommy thinks I am in pain..then when I am upset, my airway sounds like air is having a hard time getting through, so I make a sound when I breathe..
My cry is getting a "tiny bit" louder, but it's still very soft and I can't be heard unless you are in the same room with me, so I am rarely left by myself..I am a full time job - - - around the clock. (My parents friend gave them a monitor for me, but it's not working right now, so mommy and daddy are trying to fix it.)
The reason my mommy thinks I am in pain is because I have a certain cry that is a "pain" cry..it is the same cry that I had when I was in the hospital and I was getting a poke or a tube.
I am hooked up to my feeding machine 23 hours a day (see picture) and I also have a "murphy vent" (see picture) that allows my stomach to "vent" because I can't burp very easily since my Nissen surgery and I need to get the air out some way.
As you can see, my set-up is pretty limited so I can't be moved or held very easily...
Most of my day is spent in our game room with me laying on my "boppy" pillow..
My family tries to entertain me, read to me, sing to me and show me things, but I'm just very fussy...
Our goal this week is to increase my food so that I am NOT on my feeding tube all day long..the sooner I can "un-hook" from this machine, the better it will be for my development...
One thing at a time...one thing at a time..
BUT...
My quality of life is way better here at home than it ever was in the hospital, and we are all very grateful for that!!
DAY OF LIFE 119
Today started out hard but as the day went on, it got a little better..
I'm still squirmy and archy, & my mommy and daddy aren't sure if I am "hungry" or the food is "hurting" my belly...it's so hard to tell "why" I am uncomfortable, but I just am...
I only sleep for about 15-20 minutes and then I wake up with my face grimacing in pain...
Tonight was "date night" with my brother, so my mommy took him out while my daddy took care of me. Nana and my sister went to craft night. Everyone is trying to adjust to a "normal" routine with me.
My daddy is so kind to my mommy...he is going to "hang out" with me all night while my mommy gets some good rest...she needs it...
Thankful to have such a good daddy...
I'm still squirmy and archy, & my mommy and daddy aren't sure if I am "hungry" or the food is "hurting" my belly...it's so hard to tell "why" I am uncomfortable, but I just am...
I only sleep for about 15-20 minutes and then I wake up with my face grimacing in pain...
Tonight was "date night" with my brother, so my mommy took him out while my daddy took care of me. Nana and my sister went to craft night. Everyone is trying to adjust to a "normal" routine with me.
My daddy is so kind to my mommy...he is going to "hang out" with me all night while my mommy gets some good rest...she needs it...
Thankful to have such a good daddy...
Friday, April 1, 2011
DAY OF LIFE 118
Today is Friday (and that's NOT April Fool's either) :)
I didn't sleep last night, so THANK GOODNESS my Nana is still here so she could watch/hold me while my mommy took a good long nap..she is exhausted!!
It was a pretty good day overall.
I squirmed and arched "some" with reflux - but way better day than yesterday. Today the Prevacid and Zantac seemed to help.
I got some good rest with little cat naps today and my mommy did some good SLOW stretching with me too and had me support my own head for as long as I could. It kind of hurts to "sit" up, but she does it slow with me. I am still looking "up" a lot and my parents don't know "what" I am looking at. They think maybe I am checking out angels. :)
I am still on a "continuous feed drip" at the increased calorie (27) and decreased volume (20 ml's per hour) and this seems to be working for me.
My daddy and brother hung out with me tonight so my mommy could take my sister on a "girls night out" date with Nana too. My brother and sister need time with my mommy because she has been gone and she spends a lot of time taking care of me. I think they "miss" her, so it was good for them to spend time together.
My mommy ran into my NICU friend's mommy tonight and she was happy to see her. The NICU world makes very quick "bonding" relationships. I guess that sometimes, this is what stress will do...help you make new friends.
AND...making "new" friends is a GOOD THING.
We have been blessed with the greatest "new" friends and we love our "old" friends too!!
I didn't sleep last night, so THANK GOODNESS my Nana is still here so she could watch/hold me while my mommy took a good long nap..she is exhausted!!
It was a pretty good day overall.
I squirmed and arched "some" with reflux - but way better day than yesterday. Today the Prevacid and Zantac seemed to help.
I got some good rest with little cat naps today and my mommy did some good SLOW stretching with me too and had me support my own head for as long as I could. It kind of hurts to "sit" up, but she does it slow with me. I am still looking "up" a lot and my parents don't know "what" I am looking at. They think maybe I am checking out angels. :)
I am still on a "continuous feed drip" at the increased calorie (27) and decreased volume (20 ml's per hour) and this seems to be working for me.
My daddy and brother hung out with me tonight so my mommy could take my sister on a "girls night out" date with Nana too. My brother and sister need time with my mommy because she has been gone and she spends a lot of time taking care of me. I think they "miss" her, so it was good for them to spend time together.
My mommy ran into my NICU friend's mommy tonight and she was happy to see her. The NICU world makes very quick "bonding" relationships. I guess that sometimes, this is what stress will do...help you make new friends.
AND...making "new" friends is a GOOD THING.
We have been blessed with the greatest "new" friends and we love our "old" friends too!!
DAY OF LIFE 117
Today was kind of a hard day.
I was pretty squirmy and cried quite a bit.
My g-tube is pretty sore and I am growing some "granulation tissue" so my mommy is calling the doctor to get some "Triamcinolone" cream. "Triamcinolone" is in a class of drugs called steroids. It prevents the release of substances in the body that cause inflammation. It works pretty good.
A representative came today from The Learning Center to "evaluate" me and determined that I would qualify for their program to help me get "on track" with development. The lady was nice.
BUT...As she was "testing" my abilities, she tried to pick me up and "forgot" I had a g-tube and I screamed and screamed. It hurt so bad and my mommy came out of her seat to rescue me.
The lady said that I should be having tummy time. She is "right" - tummy time is super important, but my g-tube has been so sore that my mommy and daddy are scared to "move" me very much, not to mention that I am still refluxing (but keeping it down) and "movement" sometimes agitates me more. My parents are going to have to figure out a way to give me "tummy time" without hurting me and making me reflux.
I'm pretty sensitive to most everything (noise, light, movement) and I just need to do things on my own time...AND I will.
Right now, I am loving my "boppy" pillow.
My mommy knows exactly "why" I've been getting 24 hour "nurse" care....I require it.
I am getting way better rest that I was "in" the hospital, because I am not getting tests run on me all the time, so I am glad I am home and so is my family.
I don't sleep for long periods of time..I'm more of a "cat-napper.
Thank goodness that Nana is here because she is helping us out so much.
AND...my mommy's way awesome REALLY positive friend brought us dinner too.
We have so many things to be thankful for!!
Information Regarding G-Tubes & Granulation Tissue
http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml
I was pretty squirmy and cried quite a bit.
My g-tube is pretty sore and I am growing some "granulation tissue" so my mommy is calling the doctor to get some "Triamcinolone" cream. "Triamcinolone" is in a class of drugs called steroids. It prevents the release of substances in the body that cause inflammation. It works pretty good.
A representative came today from The Learning Center to "evaluate" me and determined that I would qualify for their program to help me get "on track" with development. The lady was nice.
BUT...As she was "testing" my abilities, she tried to pick me up and "forgot" I had a g-tube and I screamed and screamed. It hurt so bad and my mommy came out of her seat to rescue me.
The lady said that I should be having tummy time. She is "right" - tummy time is super important, but my g-tube has been so sore that my mommy and daddy are scared to "move" me very much, not to mention that I am still refluxing (but keeping it down) and "movement" sometimes agitates me more. My parents are going to have to figure out a way to give me "tummy time" without hurting me and making me reflux.
I'm pretty sensitive to most everything (noise, light, movement) and I just need to do things on my own time...AND I will.
Right now, I am loving my "boppy" pillow.
My mommy knows exactly "why" I've been getting 24 hour "nurse" care....I require it.
I am getting way better rest that I was "in" the hospital, because I am not getting tests run on me all the time, so I am glad I am home and so is my family.
I don't sleep for long periods of time..I'm more of a "cat-napper.
Thank goodness that Nana is here because she is helping us out so much.
AND...my mommy's way awesome REALLY positive friend brought us dinner too.
We have so many things to be thankful for!!
Information Regarding G-Tubes & Granulation Tissue
http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml
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