You can hear me cry

Phew, I am tired! Some changes this week, followed by not many


changes. More on that below….



The highlight of my week was excavation of my ventilator. I am so glad

that I don’t have that down my throat any more! The feeding tube is

still in my mouth, but that isn’t so bad. The nurses put the CPAP on

me on Father’s Day. It was my present to Daddy, since I didn’t have

time to go to the store. The CPAP is held into my nose by a nifty camo

hat and lots of tie downs. It looks like I have orthodontic head gear

on, but hey, I know it is a step in the right direction.



I’ve been very busy eating, and my feeds have gradually increased. In

addition to my IV food, I now get 27ml of formula from my feeding tube

every three hours; once I get to ~40ml, I will be off of IV fluids.

That will be very welcome as the nurses can then take the long term IV

out of my left arm. It really gets in the way during batting practice…

I’m told that after I get to ‘full feeds’, I can then work on breast

milk and bottles.



All this feeding is helping me grow up to be a big boy. I’m now firmly

at 4 ½ lbs. And with the ventilator out, everyone can now hear me when

I cry or sneeze. So far, these sounds are very muffled. That is not a

surprise given the duration that the ventilator was in, and I’m sure

I’ll be ready for Yell Practice soon enough.



But the real change this week is…not many changes. That’s right, I’ve

settled down into a period where I am stable, and I just increase my

feeds and lower my CPAP settings to get me to ‘normal’. Given the

excitement of the last few weeks, ‘not many changes’ is welcome

indeed!



Thanks for your thoughts, prayers, and well wishes.



All for now,

Trey ‘33

Father's Day and Trey's latest pics

Well it was a good but busy weekend. Vince had his first Father's Day. Trey made him a tie with his footprints on it. We went to the Astros game with Sarah's Dad and called everyone to wish them a Happy Father's Day.

The big news of the day is that Trey got extibated. He is now breathing completely on his own and doing good. The nurses were kind and took a picture of him without any tubes for us. He now has a CPAP machine that helps make it easier for him to breath. The next big steps will be a nasal cannula followed by bottles.

http://sarahandvince.shutterfly.com/

Week of First

My Week in the NICU


By Trey



This was a week of firsts. I wore clothes for the first time this

week, which was very exciting. I was getting quite embarrassed going

around with just a diaper on for so long. Cousin Cindy and Alli

bought me some cool clothes that have snaps all around them, designed

just for kids like me that have lots of monitor wires on their chests.

My favorite one has a Texas theme, complete with cacti and gushing oil

wells. Spindletop!



But my favorite thing about this week is that Mommy and Daddy finally

got to hold me. It was great! I got to leave the incubator for the

first time since I was born, and each of them got to hold me in a

rocking chair for around 20 minutes. It is quite a process to get me

out of the incubator; my tubes and monitors all need to be untangled

and disconnected, and the machines that monitor me have to be wheeled

into different positions. I’m also pretty sore from the removal of the

chest tube, so it is kind of painful and all very agitating. But once

I get in their arms, I calm down very quickly, and I even managed a

small smile. That is a new trick for me!



I’m still quite bloated, but am continuing on the diuretic to help

with that. This makes it difficult for me to open my eyes, but I am

trying. While my weight fluctuations, I am firmly above 4 pounds now.

That means I more than doubled my weight since I was born. I’m a big

boy now!



So, Daddy tells me all the conference realignment stuff has been

resolved (at least for most teams), and that A&M will stay in the Big

12 (or whatever it will be called). While I’m happy that the Aggies

will get more than double their current TV money, I’m also a bit

disappointed about not going to the SEC. Playing in Baton Rouge or

Gainesville would have really beat out playing in Lubbock or Waco. But

I understand it was the safe move. Still, by the time I get to A&M, I

highly doubt the Big 12 will be around in its current incarnation, so

I may just get to see the Aggies play at ‘The Swamp’ on a conference

road trip one day.



This weekend I plan on pulling my ventilator out. Really. I think I’m

ready for it to be gone, and I’ve been doing my best to pull it out.

It is so uncomfortable and really gets in the way during batting

practice. I overheard the nurses say that if it ‘accidently fell out’

they would not try to put it back in, but instead give me the CPAP.

Maybe I can help them out! My breathing has been good at 18 breaths

per minute at ~40% oxygen, so it is time. Come on nurses!



I’m also tolerating my feeds much better then before. I’m on a special

formula that will not leak into my lungs, and I’ve already doubled the

amount of food I receive (from 5ml to 10ml every three hours). I plan

on increasing my feeds until eventually I will be only milk/formula

and no IV food.



Ok, all for now. Thanks again for all your thoughts and prayers.



Trey ‘33

My 5th week in the NICU

SEC or PAC-10?


By Trey Rapp



I had another busy week in the NICU. I had lots of visitors, and many

different medications and treatments. My feedings have been on again,

off again. There are so many changes each day, it is hard to keep up

with them all!



All of the tubes connected to my body are really starting to get to

me. I can’t wait to get them off! The doctors were trying to keep my

chest tube in for a few more days, but I thought it was time for it to

go. While they weren’t looking, I kicked it out. Gratefully, they

didn’t feel the need to put another chest tube in, which means I can

do my favorite thing; lay on my tummy! Horray! I’m feeling better

already. Last night I was having batting practice, and my arm IV fell

out. The nurse decided to replace it in my foot instead of my arm,

claiming that would keep me from hitting it against the ventilator. I

am an active boy. Don’t they know that I just can’t wait to get out

and play?



The nurses had me eating this week, but my insides got upset, so they

had to stop the feedings. This IV feeding just doesn’t fill me up; I’m

looking forward to a real meal so I can start to grow more! Hopefully

in a day or two they will feel that I’m ok to eat again.



I’m on some antibiotics for two or three infections that I have right

now. This made me have my second spinal tap, which checks for

Meningitis. So far no Meningitis, which is very good. Mommy and Daddy

wanted to hold me now that the chest tube is out, but with the

infections, the doctors said I am still too weak. I really want to be

held, so hope that comes soon. We all have been very patient, but

after 5 weeks, it is time! We pray that day comes soon…



I’m really interested in what is going on with this conference

realignment. Where will the Aggies head to? I’m a bit torn; it would

be great to keep t.u. in the same conference for tradition, but I just

feel that the SEC is a better conference and fit for Texas A&M. I

guess we’ll know this week!



And Daddy tells me that poor t.u. lost out in baseball to TCU. Augie

was way overrated this year. Go Horned Frogs!



Attached is a picture of me from over the weekend. I’m a little

bloated in this picture, so I’m not actually that big. But still, you

can check out some of the progress I am making :-).



This week I hope to eat again, and to fight off these infections. My

breathing has been pretty good, so once I start eating for several

days, the doctors promised to take out the ventilator. Until then, I

try to whack it out with my arms during batting practice :-).



Thanks for your continued thoughts, phone calls, messages, and prayers.



Love,

Little Slugger Trey

One month old

I am one month old!


By Trey Rapp



I was one month old yesterday. I celebrated the occasion by receiving

lots of visitors, as well as discontinuing the ‘wonder drug’ that I

had been getting to help clear up the fluid in my lung sack. That

fluid was really uncomfortable, so I’m glad that it has gone down. At

one point, I was leaking 78ml in 8 hours, but haven’t had measurable

output since Friday. Now if I can only get this tube out of my chest,

I could move around again! I really miss resting on my tummy; that is

my favorite position. Daddy laughs at that, as that is his favorite

way to sleep as well.



The nurses are now giving me caffeine every morning (my morning cup of

‘Joe). This ‘reminds’ me to breathe on my own, and is in preparation

for the ventilator to be replaced by a nasal CPAP, which will still

give me Oxygen and help me breathe, but will be attached to my nose

instead of down my throat. Removal of the venitilator is a key step in

me becoming a Big Boy, so I’m looking forward to that.



Mommy told me about the party that they had for me on Saturday. I wish

I could have been there to hang out with everyone, but that will have

to wait for my Baptism in the fall. She told me I got some great

gifts, which I appreciate very much. I will be very sharply dressed,

and have lots of gear to keep me safe and happy!



I’ll be rooting for the Fightin’ Texas Aggie baseball team tonight as

they battle Miami for a chance to continue to the Super Regionals.

They won two-in-a-row yesterday to keep going, but it may have been

easier if we pitched better on Saturday. Why did Coach Childress use

his best pitcher Loux on Friday, instead of waiting for the tough game

on Saturday? Didn’t he remember when he did that a few years ago, and

it didn’t work? Oh well, at least they are still winning. And I guess

Loux will be available to pitch again tonight. Too bad I can’t watch

the game live in the NICU; if only I could convince the nurses to

install satellite TV….



This week I plan on keeping my lung fluid down, and trying to breathe

more on my own. I also hope to eat real food later this week; this IV

fluid doesn’t have much taste and while it keeps me going, it doesn’t

let me grow as big and fast as formula or breast milk lets me grow.

I’ll be on a special formula for a while that is specially made for

preemies like me with premature lungs; after that, it is on to breast

milk. I’m hungry already!



Thank you everyone for your visits, thoughts, emails, and prayers.



Love,

Trey '33

The Ride Continues

Just a quick update…we’ve been very busy


traveling back and forth to the hospital, as well as work/life/etc.

This week has probably been our toughest so far. Our little slugger is

hanging in there and being a tough little guy.



After last week’s unsuccessful attempt to excavate his ventilator,

Trey continued to have breathing problems. The x-rays remained

unchanged, and the radiologist recommended an ultrasound. The

ultrasound revealed that Trey's breathing issue was not fluid inside

the lungs but instead fluid outside the left lung cavity. This fluid

was preventing that lung from being able to fully expand. A small

needle was inserted into the cavity to remove the fluid, and the first

time this was done almost 2 ounces of fluid was removed (mind you, he

is still only ~35 ounces total). This procedure had to be done two

more times. Unfortunately, the fluid kept reaccumulating, and on

Sunday the doctors decided it was necessary to put a in a chest tube

to allow for a continuous fluid drain. The NICU staff is working hard

to keep Trey comfortable while this tube is in place and he is

breathing easier.



The tub is draining an almost amazing amount of fluid (~150 ml

yesterday), so basically much of the fluid he is taking in via

intravenous is leaking out to his lung cavity. The hole in his

lymphatic system is supposed to heal on its own in time, but we may be

looking at other alternatives if it does not show signs of

improvement. The doctors are discussing a drug that they call the

‘magic mystery’ drug. It apparently works in this situation, but they

are not sure why and have little research to know side effects, etc.

We are praying that whatever plan of care is chosen, that Trey gets

better soon.



Trey's view



It has been a rough week but I am hanging in there. My lung area

continues to fill up with fluid, which makes it very uncomfortable and

difficult for me to breathe. How am I supposed to kick and play with

such breathing problems? It is hard to train to be a slugger with such

restricted breathing capacity. It turned out that I did not have

pneumonia, which I guess is good. Still, these tubes in me are getting

old, and is seriously crimping my style. I used to enjoy kicking all

day and whaling my arms around, but now they must be kept still to

keep all of the attachments secure. I hope that ends soon so I can

play again….



Today when mom and dad came to visit they held my hands and I opened

my eyes for a little while. Even though my vision isn't clear yet I

was glad to see them there. I know they visit often because I

recognize their voices. I also learned a new trick: if you put your

pinky finger in the palm of my hand, I like to squeeze it. I did this

for Great-Grammy and Daddy, and they both liked it very much.



This week I may get that fancy drug the doctors speak of to help heal

my in-sides. I hope it works quickly. I’ll also be tracking the

Fightin’ Texas Aggie baseball team as they head to Florida for

regional play this weekend. Gig ‘em Ags!



Please keep me in your prayers as my lungs grow stronger. Until next time…Trey