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?  :)

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!!

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...

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!!!

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.  :-)

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!!

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!!