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October 2007, Month 4 at Home

October 28 - Busy Week

We had a very busy week, which ended with all three Pottses having a stomach virus
this weekend.  

On Wednesday Rees went to see his neurosurgeon who is in charge of the helmet.  
Rees has done so well that the helmet is now optional at night.  In one month Rees is not
allowed to wear it.  At that point we will go to the orthodics clinic for a final measure and
photo session of Rees’ now round head.  We were once told Rees was microcephalic,
meaning that his head size was much smaller than expected for his size and age.  He
has now closed the gap and is almost up to the normal curve and no longer has the
label microcephalic.  Another graduation for Rees.

Also on Wednesday, Rees had an MRI of his brain which may give some clues to his
vision and possible other areas of challenges that may be down the road.  Because
there is no way to keep a wiggly baby still during the scan, Rees had to be sedated.  This
made a quick test into a long afternoon of prep, including 3 tries at an iv—just in case he
needed it--we didn't.  We should know the MRI results next week.

On Thursday night Rees threw up a couple of times, then starting having diarrhea.  
Luckily we already had our monthly appointment with the GI doc on Friday.  Because
Rees wasn’t “acting” sick she thought is was a quirky tummy thing.  When it continued
through Friday night and only got better with pedialyte, it was thought to be a virus.  We
were actually praying for a virus, and not a developing food intolerance or bacterial
infection.  

Rees got a VERY good report from both his GI and Pulmonary doctors.  Direct quote:
“Rees’ lungs sound fantastic.”  Wow, no one with a stethoscope has ever said that
before.  We can now wean up to using the passy-muir speaking valve to 3 hours, twice a
day.   So far we have gotten to 20 minutes—Rees is now really understanding that he is
making the sounds and is very cute.

The GI doctor said Rees is doing so well with the NG tube and his digestion that we don’t
need to see her for 3 months!  In the mean time we are slowly going up on his food.  
Once we get to a certain amount, we can stop the feeding pump for 4 hours a day.  What
freedom this will be. Although we are not out of the woods yet, we are doing well with
the plan of avoiding a G-tube (a tube that requires surgery to place a feeding tube
directly into the abdomen).

On Saturday, dad woke up with the virus and by the afternoon mom was sick too.  Not a
fun day at Potts headquarters.  The good news was Rees never acted like he felt bad
and his nurse played with him all day while mom and dad felt ick.

Sunday, Aunt Lynn and Uncle Brit came to check in and help with Rees since we didn’t
have a nurse.  Amy and Mark were on the mend.  The doctor wanted us to try Rees back
on his formulas since he had been on pedialyte for several days.  If he doesn’t keep
down the formula, it may mean a trip to the hospital for iv nutrition.  Mom dreads the
thought of TPN. Currently, after 5 hours, no spits ups.  Yippee!

One of the highlights of the week was Rees had his first date.  We ran into his girlfriend
Sophia in the TCH cafeteria on Wednesday.  It was fantastic to see how chubby her
checks have gotten and how big she has grown—she was half of Rees’ birth weight.  
Another NICU angel.  This was the first time we have seen her outside the NICU.

October 21 - Rees is Talking

Rees got his Passy Muir Speaking Valve on Monday.  This is a small valve that goes over
his trach instead of the bulky HME filter.  The Passy is a one-way valve, allowing Rees to
breath into his trach, but forces him to breath out through his mouth or nose.  This is a
very different sensation for him and takes a while to get use to it.  Our orders from the
doc were to try him on it for 30 seconds to one minute for the first three days and then
as tolerated.  Rees barely made it to the 30 seconds the first few times before coughing
it off with great pressure.  By this weekend, Rees is keeping it on for 5-10 minutes at a
time.  What fun for mom and dad!  We can hear our little guy’s voice.  He is starting to
figure out that he can make sounds.  Our goal is to eventually use the Passy for most of
the day.

There is an incredible story of the inventor of the Passy valve.  
Click here to read more.

We had a wonderful weekend.  Saturday Rees went for a stroll through Hermann Park.  
Sunday, he hung out in the back yard.  How nice to have cooler weather!

We are officially breathing a sigh of relief that Rees has exhibited no signs of
pneumonia from our scare on Wednesday.  


October 18 - Back to the ER

On Wednesday, the emergency bell woke mom up very early, just after dad left for work
after 6 a.m.  (We have a doorbell in Rees’ room that rings in mom and dad’s room, so the
nurse can easily call for help.)  Rees had spit up twice.  When we suctioned him, I
smelled the end of the suction catheter and it definitely smelled gastric, which means
that if Rees didn’t cough it all up he could have aspirated and would catch pneumonia.  
We immediately paged a doc and they said to bring Rees to the ER right away to get
check out.  

We learned a new ER trick.  Only have an emergency between 6 and 9 a.m.  (The people
who clog up the ER with colds, don’t get up that early.) They called Rees before I finished
checking in.  They did chest x-rays and trach cultures, but said if he aspirated it wouldn’
t show up for 12 – 24 hours.  Now that we are past that point, we think Rees is ok with
no respiratory issues and did a super job keeping the tummy juices out of his lungs.

The x-rays of his lung showed a general improvement of his lung health since last
week.  Wow!

Rees is doing well with his therapy and is starting to use his arms to prop himself up in
a sitting position.  A huge milestone, although he still prefers for someone to help him
stand up.  He gets very excited and proud of himself when he stands.


October 16 - Nurse Dad On Duty

Today Dad stayed home with Rees because Mom had a busy museum day.  It was a
good thing we had made this plan in advance, because our nurse did not show up
today.  It was a busy day and Dad got help with his feeding, PT and OT sessions.  Dad
then took Rees on a nice walk in the cooler weather.  Rees cut the outing short by
pulling out his NG tube for the first time.  Nurse Daddy sprung into action and replaced
the tube with no assistance.  What a fantastic dad!

October 14 - Road Trip

Saturday was Oct. 13, the one-year anniversary of my admission to the hospital for pre-
term labor.  Without medical intervention to surgically close my cervix and to medically
try to stop the contractions, Rees would not have survived.  What a difference a year
makes!  Mark and I bravely loaded Rees in the car and took off to Waco to spend the day
with Ya Ya, Pop Pop, Aunt Carrie, and Cousins Thomas and Camryn before anyone
caught anything during cold season.  Camryn, now 1.5, loved the “be be.”  It was so nice
to let Rees sit outside in nice weather—no heat, humidity or mosquitos.  Rees was a
great traveler.  Mom and dad were completely exhausted after the trip, but were proud
of how smoothly things went.

Ya Ya and Pop Pop, Thank you so much for all you do to take care of your baby girls and
your grandkids.  I hope you know how much we appreciate the wonderful things you do
for us.  

Rees is still doing well with his NG tube.  We are supposed to be introducing new flavors
to Rees via drops of fruit juice.  We found a much easier way than buying containers of
different flavors just for a few drops: Dum Dums.  Yes, Rees is now licking lollipops—
candy is perfect for a Halloween baby.

October 11 - Hearing in Stereo

Rees’ new ear molds came in and both fit wonderfully with no feedback squeaks.  He is
now hearing in stereo surround sound.  He also traded in his loaner aids for his own pair.


With all of the NG excitement, I forgot to mention that on Monday night we had a scare
with Rees’ stoma (trach site).  It was bleeding.  We went to see his ENT the next day.  
Mark and I had a list of all of the reasons why we should take out the trach—our efforts
were denied, but he said we could be first on the list this spring if Rees successfully
avoids respiratory infection this fall and winter.  Rees’ doc was so proud and amazed
that Rees was completely off the vent and doing so well

On Tuesday Rees also had his first round of Synergis shots, which help lessen the blow
if he does get RSV.  He had to weigh in before the shots.  Rees now tips the scale at 15
lbs. 9 ounces.  He gained more than his birth weight in the past 2 weeks.

October 10 - No More NJ Tube!

On Wednesday morning Rees’ NJ feeding tube came out about 6-8 inches.  The
humidifier that covers his trach at night steamed off his cheek pads that secure the
tube.  Even though when placed with a few loops to keep the tube from pulling out of
place, we were certain this time it was out of the jejunum and either in the duodenum or
in his stomach.  We were on spit-up alert all day since Rees has never tolerated the
tube above “the J” and any aspirations would jeopardize his recent lung triumphs.  

Rees went an entire 25 hours with no spit ups!  Then on Thursday morning Rees spit up
10-20 cc of formula.  There went our lazy day.   We headed to the ER so that they could
verify the placement of the tube.  It was in his stomach.  Alleluia!  Rees’ reflux has
remarkably improved, so he graduated from the NJ tube to an NG tube, which can be
replace any time at home.  We will not have to tape his face like Fort Knox to keep the
tube in.  We are praying that Rees will continue to tolerate food in his tummy.  The next
step will be to move away from continuous feedings with the pump to scheduled
feedings every few hours.  Then Rees will have time with zero tubes.

The ER doctor said one small spit up a day is normal for normal babies, and that  since
our goal is to have a normal baby, we are on the right track.

A day at TCH makes us feel so blessed that Rees is doing so well.  We see so many
families that have many more challenges than we have with long-term issues.  As we
were celebrating Rees’ new NG tube, our ER roommate was getting an NG tube because
she was having complications.  What a contrast.

Please say a big prayer for all of the amazing parents who care for their medically
fragile children.


October 7 - First Fun Outing

Mark, Amy and Rees had a very adventuresome day.  Even though it was very steamy, it
was under 90 degrees today and the ozone level was safe for Rees to spend time
outside.  Mom and dad felt up for bringing Rees on our first non-medical outing.  We first
went out for lunch.  We sat outside under the covered patio—no one else sat outside.  
Yippee.  We had a very nice time.  Rees occupied himself with his links and pacifier.  
Then Rees went on his first play date.  He went to visit his buddy Joaquin, also 23-
weeker from the NICU.  It was so fun to see the boys together for the first time.  Joaquin
is doing fantastic.  He watched Rees and babbled at him.  Rees was mostly occupied
with chewing on his hands.

We had a very busy week:  Rees had 7 therapy sessions.  He works very hard and then
crashes at the end of the day with a big nap.  Part of his new regimen is brushing
therapy designed to help stimulate sensorial neural development, which was
interrupted for Rees by coming early and being in the hospital for so long.  We brush his
arms, legs and back every 90 minutes while he is awake.  The biggest differences we
have seen this week that could be connected to the therapy is that Rees’ eyes are
moving back and forth much less and he is focusing more, and that Rees is making
more movements with his mouth—including smiles and sticking out his tongue.  What a
joy.

Rees also had new molds made for his hearing aids on Thursday.  We are hoping to get
them early this week, so Rees can start hearing from his left ear—this one has never fit.

No nausea for mom since the chemo dose was reduced last week!  This has made our
recent nights without nurses much easier.


October 1 - One Month until Rees' Birthday

Save the Date:

Rees’ 1st Birthday
October 30
Peeks & Treats
4 – 7 p.m.
3431 Linkwood

Rees will be inside waving at his friends who come by to meet
him on his 1st birthday.  Everyone is invited, especially if you are
reading this website and keeping up with our tough angel.

On Friday Rees had a fabulous blood gas indicating that he is breathing well on his own
and getting rid of CO2 effectively. (CBG CO2 at 40! – for those who can interpret.)  He
graduated to a new chamber to give him his breathing treatments without an ambu bag.  
Mom and dad are very glad to not have to get that scary thing out on a regular basis.

Dad actually went out of town this weekend to Indiana.  He hasn’t seen most of his
family since May 2006.  He was very excited to see everyone, but got very lonely for his
little guy at home.  They sent him home with lots of Chicago Bears gear for Rees.

Uncle Brit came in for reinforcement detail at the Rees Potts Headquarters.  He was a
tremendous help.  We didn’t have a night nurse on Saturday, but Rees was in good
hands.  We had a fun time.

Rees has started several new rounds of therapy.  He now has a therapist for oral motor
to help strengthen his mouth for feeding, an occupational therapist to help with his fine
motor skills, and a physical therapist to work on his gross motor skills.  Our plan is to
tackle intense therapy now in hopes of needing little to no therapy in the future.  All of
this is in addition to his weekly speech/hearing therapy. The new therapists are all
adding new routines to Rees’ daily schedule.  Some of his exercises must be done
every 90 minutes while he is awake.  He is a very busy guy.

When sitting in mom’s lap, Rees can stand up by himself with no help bearing weight on
his strong legs. It is quite amazing to see.  Mom helps hold him straight for balance.
Rees is also now grabbing his feet and playing—a big milestone developmentally.  Mom
and dad are so amazed at the strides he is making.  He is also focusing his eyes better
with less of the back and forth movement.  What a difference to be off the tethering
tubes of the vent.

Mom is starting to feel better from her decreased dose in chemo.  It has really made a
difference.
LoneStarPotts
Ventilator free family - Take Two!
Sweet Reesy Pie
Hey look at me
Yummy yummy handsandwich
I love sticking out my tounge
My cheeks get to breathe
I think someone is coming
to stick a tube in my nose
What do you think?
My blue eyes look just like Dad's
I think it is peachy
Mom took 200 pictures
in the hospital of my
tapeless,tubeless face
The Beautiful Boy
Under the Tape
Does Amy look excited?
There's my main man - Dr. Bloss!
Can we please get rid of
all of this equipment?
I can hear again!