1st Half of 2008
June 24 - Happy Father's Day & New House
Father’s Day 2006 – Found out Amy was pregnant
Father’s Day 2007 – Spent the night with Rees in the hospital (one of the tests before
Rees could come home)
Father’s Day 2008 – Rees went to Home Depot with Dad
We moved on Thursday, so we woke up in our new house on Friday, June 20 – Rees’ 1-
year anniversary for coming home. Moving out of the “hospital house” was a great way
to celebrate this milestone.
Rees loves his new house—especially the new lights.
New Address:
4002 Drummond
Houston, Tx 77025
Many thanks to all of our helpers who kept Rees entertained, and out of the way, during
the move: Cousin Todd, Cousin Jenny and Uncle Brit; and the master packer and
unpacker Ya Ya; and the utility benefactor Ruth for the dryer.
Rees has been having trouble spitting up the last couple of weeks. It is unclear what the
cause is—we think it is a cross between reflux, congestion and the feeding tube making
it harder to clear his throat. We are trying different combinations of meds to help.
June 11 - Rees is crawling!
Rees is officially mobil! On Monday he a couple of crawl steps and by Tuesday night he
was making bee-lines for his toys. Every time he gets faster and faster.
The other exciting thing—although completely overshadowed by crawling—was that we
got the keys to our new house. Then we got sad news. Our fabulous babysitter isn’t
going to be able to help us after the month is over, so we have to start our search over
again.
Thank you to cousin Todd—he watched Rees while I went to get my blood work done on
Tuesday morning. He and Rees are big buds.
June 7 - Standing, Jumping & Hearing Better
It has been so long since our last update—we have been swamped.
We are slowly making progress with eating. Rees now actually moves his mouth and
tongue and looks like a real eater. He is getting more food down—about half of a jar of
food at a setting. We are still working on liquids in the sippy cup too.
Rees is continuing to amaze us everyday with his strength and determination. He is
pulling up to stand on anything he can grab—crib, toys, people and mom’s teeth. He isn’
t exactly crawling but he can scoot pretty far distances. When he is playing alone he
will be at one end of his giant mat with one toy and a moment later on the opposite side
with a different toy. Whenever a willing volunteer is there to hold him, he goes crazy
jumping. It is amazing how strong his legs are—once smaller than my finger, now
bigger around than my arm
His ability to play on his own has come in very handy as we prepare for our big move.
We have been busy purging and packing. Ya Ya totally rocked this week packing up
dozens of boxes. We close on the house on the 10th and plan to move in on the 19th
after doing a little work.
We have big news on the hearing front. Rees recently had his 3rd ABR hearing test,
which measures the brain’s response to sound. His hearing has significantly improved.
We were told that improvement of his type of hearing loss (sensorial neural) was not
possible. Good thing we never tell Rees what his medical expectations are! He has
surpassed them all! His audiologist turned down the level of his hearing aids. We are
thrilled with this improvement. Now Rees can hear sound, even though not perfectly
clear, without his hearing aids in, which is wonderful since there are a few situations
that he can’t wear the aids—sleeping, bathing, swimming.
Yes, swimming! Rees was cleared by his ENT to go swimming since his trach stoma
has completely healed. So, we went at the first chance we got. Rees and mom went to
cousin Trey and Niki’s wedding in Bastrop and Rees had a very fun time spending time
with all his cousins, especially boogying on the dance floor. There was a fabulous pool
at the resort. Rees was a little confused in the big pool at first, but eventually had fun
jumping on the steps. Cousin Thomas said Rees was very brave. Aunt Petey road with
us on our roadtrip, since dad was in Indiana for Grandma and Grandpa Campbell’s 90th
birthday bash. Rees is planning on going to the next party.
May 12 - Happy Mother's Day
We have had the busiest week that it is hard to know where to start.
Rees went to the pediatrician last week for his 18-month check up. The ears look
excellent. His glasses are making a fantastically noticeable difference in just about
everything. He has never pulled them off on purpose. Occasionally he knocks them
crooked when he is wiggling around. He is reaching, grabbing and looks like crawling
will be in the near future (oh no and yea!). He is also vocalizing more and more. He is
wiggling and playing non-stop, always happy. When he gets worn out he gets deliriously
excited and drains every last bit of energy, then conks out.
I got two wonderful Mother’s Day presents. Rees’ gift was moving up to 100% of the
new formula. So far, so good. For so long he was connected to the food pump for 24
hours a day. Now we are down to 12 hours. We were going to use all of the “off time”
during the day, but mom is in desperate need of sleep, so for once we are all three
sleeping through the night. I can’t explain how much better I am feeling.
My Mother’s Day present from Mark was a new house. We found a great house in a
great neighborhood very close to our current place. We found the listing last Sunday,
saw and made an offer on Monday, and the sellers accepted our offer on Tuesday. We
are scheduled to close in June. We are very excited.
Rees made his first trip to Bridge City and surprised his Great-Grandma LuLu for Mother’
s Day. She was shocked!
Last week Rees went to his first lecture at the museum. He got to sit with Dad in the
private luxury skybox with Dave, who is recruiting Rees to be his new IMAX apprentice.
Rees bought an autographed book and got his picture with the author/astronaut too.
Dad also had to go on a business trip to Midland. He was gone an entire 24 hours. Rees
and mom survived, but were VERY glad when he came home.
Rees’ big party this week was cousin Todd’s graduation party. He had lots of fun playing
with his cousins.
Last week was also Rees’ first week to start going to his school, The Center for Hearing
and Speech, for his therapy sessions. It is fun to also see the older kids in class. On
Friday before our session there was a Mother’s Day breakfast. During the program a
few moms shared their stories. On of the moms had a daughter that went through a
NICU experience similar to ours. Her daughter is doing great. Another mom, whom I
couldn’t place her accent, said they researched the best place in the world to get help
for their son, so they said good bye to their family in Oman, Jordan and moved to
Houston for CHS and TCH. I got chills. Houston is such a phenomenal place.
April 29 - Let there be sight!
Rees got his glasses today! It was expected for the fitting to take over an hour, but
because Rees was so good, it only took about 15 minutes. They have slipped down a
few times, but he is leaving them alone. Maybe he is already used to having something
behind his ears. We can already tell that he is seeing more. He has been happily
laughing at his toys and focusing on things that are not right in front of his face. The
sweetest thing is that he is definitely making eye contact. It melts our hearts for Rees to
gaze into our eyes.
How can they tell what strength to make the glasses? Not exactly sure, but this is our
guess: When we saw the eye doctor she looked in Rees’ eyes with prisms and different
lenses. When she got to the lens she thought corrected the shape of his eyes, that is
the prescription. (Instead of when adults go for an eye exam and they go through
multiple lenses saying “This one, or this one. This one, or this one.”)
We are so excited for Rees’ world to open up with his new glasses. His frames came
with magnetic polarized sunglasses that easily snap on so he can be ready for the
sunshine in seconds.
We saw the ENT on Friday and Rees ears looked much better. They got the culture back
and switched his drops and antibiotics, which he needs for another week. We will be
glad when our first ear infection is behind us—especially the antibiotics which are
interfering with Rees’ sensitive GI tract and delaying our switch to the new formula. He
is now wearing both his hearing aids. What a bummer is was to keep him from heaing.
Rees is now proficient at sitting up by himself. On Saturday night at 4:30 a.m., I was
awakened by Rees talking. He was sitting up in his bed. Mark had to lower his bed so
he can’t escape. Mom can barely reach to pick him up. Rees also has 3 new bottom
teeth making an appearance.
On Tuesday Rees went shopping with Barbara. I heard he was looking for a mother's
day present in the new gem store at the museum. On Wednesday Rees went with mom
to my ob appointment. He got to see his first very first doc and the doc who delivered
him, plus several other docs who helped during the crazy pregnancy.
On Saturday Rees went to his friend Anthony’s first birthday. We got to see Anthony
right after he was born since Rees was in the hospital then. Rees is quite the party
animal since his trach has been out - attending parties 7 weekends in a row!
On Sunday was the March for Babies. It was a beautiful day. The course was 5 miles
and I knew I couldn’t make it that far, so I was going to wait at the finish line. But, we
found a short cut. I was so excited I got to march too. Next year my goal is to do the
entire 5 miles. We marched with Rees’ Pop Pop, Bennet’s family including his twin Ellie,
Lily’s family and her twin Sophia, Landon’s family including his triplets Cade and Aaron,
and 40,000 others. The Potts crew raised over $1000 for the March of Dimes. It isn’t too
late to make a donation to support research to save the lives of the tiniest babies—you
can just click on one of the links in the blue box above. Thank you to Angie, Heather,
Brandon and Nozar for organizing our teams and to all of you who already supported the
March.
April 20 - Ears on the Mend
On Monday Rees went to The Aquarium (a cool Houston restaurant with giant
aquariums) to celebrate Dad’s new job. Rees enjoyed the elaborate lighting in the
elevators best. Mark left the consulting company to work for his client Kinder Morgan.
Way to go Dad on this great opportunity!
After going to the pediatrician office Sunday morning, we also went to the ENT on
Monday and Tuesday, and go back again on Friday. We were panicked that his
remaining hearing may be at risk. The ENT assured us that this infection had no risk of
additional hearing loss. One ear is almost well and the other is finally on the mend and
is no longer inflamed and beat red. Rees is so tough that he only cries if we touch it or
put in the drops. Right now Rees can only wear one hearing aid for the short hour each
week that his hearing therapist is here. He had so much fun playing with his loud toys
with Hannah. Hopefully we get a good report on Friday.
The antibiotics have put a kink in the progress with the formula, since they too can
cause tummy problems. We are holding at 80%.
On Wednesday Rees had a play date with his friend Malik—he was Rees’ very first
buddy from the NICU. Malik is now walking and climbing. We are so proud of him.
On Thursday, Mom actually left the house without Rees. Rees stayed with his sitter for
1 hour and 8 minutes. All parties involved did well.
I forgot to report that my labs from MD Anderson came back and the doc says
everything is still fine. He is keeping my meds at the current level. Yipppee. My tummy
is doing better at this dose.
Thank you to everyone who has sponsored us in the March for Babies! We are blown
away with the showing of generosity by Rees’ fans.
April 20 - Eyes, Ears & Gut
On Wednesday, I went with Mark to the Gathering of Heroes honoring the gold level
blood donors in Houston. Last year Mark donated over 2 gallons of platelets. It was
very overwhelming to see the hundreds of caring people who regularly share their most
precious resource with people like me and Rees who need a boost to get them through
a critical time.
On Thursday Rees saw a new eye doctor: a neuro ophthalmologist who gave us the
most thorough explanation of Rees’ vision that we’ve had. She is very pleased with
where Rees is for his history. He has a small cataract in one eye caused by his steroid
breathing treatments, but it should cause any problems or require surgery. Right now
Rees is very near sighted and he can see best just 1 foot away from his face. His vision
is expected to continue to mature and get better, but he will most likely always need
correction. The great news is that his vision getting worse is very unlikely. After the
appointment, we went straight to the eyeglass store that specializes in babies. They
had a whole room of cute kids glasses. They ordered several pairs in Rees’ size for him
to try next week. We are so excited and can’t wait to see Rees’ expression when he
gets a better look at the world.
We also saw our fab GI doc on Thursday. She was thrilled with Rees’ progress with
trying foods by mouth, transitioning to the new formula and speeding up his feeds. (His
feed pump malfunctioned recently and was running at a faster rate finishing a bottle in 3
hours instead of 4. Rees handled it nicely so we stuck with the fast pace.) Rees is now
up to 80% on the new formula. When we get to 100%, our next task is to continue to
speed up the pace of the pump until he finishes a bottle in an hour. This will mean only 4
hours on the pump a day—giving Rees 20 hours to wiggle and roll without getting
tangled in the feeding tube.
Mom had a very busy week at the Museum and YaYa watched Rees all by herself. She
helped with all of his therapies too. She is a pro.
This weekend Rees made his first overnight trip to Waco. He went to cousin Thomas’ t-
ball game, a party and a BU baseball game. The trip was cut a little short. On Sunday
we had to rush back to Houston because one of his ears was very red and hurt really
bad. He got new meds for the irritation. One of them was a flashback from the NICU:
clindamycin. We didn’t even know that came in an oral take home version. Because his
ears are still not well, Rees hasn’t been able to wear his hearing aids for a whole week.
The good news is he is responding to a few sounds without his aids.
April 14 - Silence for Rees :(
Tough week ahead. This weekend Rees came down with his first ear infection. You
wouldn’t know he was sick. He isn’t crying or cranky, just couple extra naps during the
day. He has to be on eardrops for 10 days and can’t wear his hearing aids. Mom and
dad are VERY SAD he won’t be able to listen for such a long time. It breaks my heart to
see him playing with his favorite toys whose sounds usually make him smile. We feel
like our giant steps of progress on all fronts may be derailed for this time period. Ya Ya
is here this week to help during a busy museum week for mom.
Now for the good news of the last couple of weeks….Rees is doing a little bit better with
his eating. His latest addition to his tastings are Gerber cheetos. His favorite is still is
tootsie roll pops that he now holds all by himself. The biggest recent accomplishment is
using a sippy cup for juice. He is doing few more sips every day. After spending at least
$50 on different kinds of fancy sippy cups to test to see what would be best for Rees,
the conclusion was the kind from the dollar store—of course. We are now up to 70% of
the new formula. Slowly but surely.
In the last couple of weeks, we’ve only had a couple of doctor appointments. Two
weeks ago we saw a PM&R doc (physical med and rehab). She did a developmental
assessment and put Rees at about 9 to 10 months, which showed steady progress
from the last big evaluation in December. All assessments have Rees’ “developmental”
age close to his “coming home” age.
Last week we saw his pulmonologist and got a great report. He discontinued Rees’ last
lung medication (inhaled puff)! AND said we could start weaning off of the all-night
oxygen monitor at night per mom’s comfort level. This is quite a graduation. He also
cleared Rees for his first big vacation on a plane to the beach to meet his Potts cousins,
aunts and uncles this summer. We don’t have another appointment until September
when we start planning for RSV season.
God has seemed to put angels in place when we really need them and he sent one to
our house this week. We found a baby sitter for Rees, so mom can start getting more
non-Rees work done. We never thought we could find someone we feel absolutely
comfortable with, but we found someone above and beyond our wish list. She is going to
come a few days in April and then a regular day schedule in May.
On the social front, Rees is becoming a party animal. He got to see his cousins Thomas
and Camryn last weekend and go to his first big party. Thomas is letting all his friends
know that Aunt A let him touch his cousin Rees, but just on his feet. Reesy also got to
go out to a fancy dinner with Pop Pop at Chruascos—not the best kid restaurant, but the
grown-ups really needed a good steak and tres leches. Rees finally made his first trip
with mom to the museum to see the dinosaurs and meet all of his friends there. Rees
also helped mom and dad celebrate their 3rd anniversary—a wonderful contrast to our
2nd anniversary when Rees was struggling to breath and eat in the NICU. Rees was
quite social at Skip and Casey’s engagement party too.
Rees has a new cousin on the way in Austin! Congrats Toby and Renee. We are so
excited for you.
March 29 - Rees' 1st Vacation
Rees got excellent reports at his appointments this week. On Tuesday he had an
echocardiogram to check on the clot in his right atrium. Then we saw the cardiologist
to get the results: the clot is gone! It has most likely dissolved. We have been officially
cleared by cardiology and don’t need to go back. A big check off the list.
On Thursday we saw the neurologist. He was very proud of Rees for all of his
tremendous progress in the last 6 months. In a group of babies as early and as sick as
Rees was, he would put Rees in the top 5% in neurological development. He also said
Rees’ happy and busy personality will suit him very well as Reesy will have to continue
to work very hard in his therapies and in school to overcome his setbacks. We are very
happy with this news.
After the appointment on Thursday we headed straight to Galveston for our first family
vacation. Although we have been to exotic, far-away destinations, Mark and I both
agreed this was the most fabulous vacation we’ve ever had in our lifetime. It was so
incredible to see our little angel laughing and enjoying the new sights, sounds and
sensations. He smiled in the sea breeze, squished his toes in the sand, and even put his
sandy hands in his mouth. (Amazingly mom didn’t have a heart attack.) We had an
absolutely wonderful time being normal people.
On Saturday we headed back to Houston to the NICU reunion where we saw several of
Rees’ nurses, doctors and friends. It was great to see how much all of the tiny babies
have grown.
We are starting to make progress with switching to the new formula. We are now up to
50/50. We are hoping to be at 100% in a month. And for all of you who have helped pray
for poop….Rees is now for the first time producing lumps. Each one brings lots of
excitement at the Potts house.
March 24 - Rees Springs Forward
RSV is officially over in Texas and with the trach out, Rees has a significantly less risk
of infection, so we are cautiously taking Rees on outings. Last weekend he went to his
cousins Julian and Aidan’s 2nd birthday party. When we started walking up the drive to
the party in the backyard, we heard “here comes Rees.” By the time we got to the
backyard, all of the partygoers turned into the paparazzi. All cameras were focused on
Rees. On Sunday we visited his friends Sophia and Joaquin, who are both doing great.
During the week cousin Troy stopped by for a visit and meet Rees for the first time.
Mom had a check up at MD Anderson on Tuesday and got a good report. The lab results
will come back in a couple of weeks.
You would think that we would pick any other place to go visit than the hospital, but we
couldn’t wait to bring Rees to see his neonatologists. On Wednesday we surprised
them. They were very happy to see what a huge, happy guy Rees has become. Rees
even got to sneak to see his nurses Romannee and Tiffany. Rees gave Romannee very
odd looks when she gave him a refresher Chinese lesson. It was so awesome to see
the crew that helped our little angel beat the odds again and again.
On Friday, mom took Rees to the Stations of the Cross. Rees still can’t go inside church,
so luckily one of our churches does the service outdoors with actors—in Spanish. Even
though I couldn’t understand much of the words, it made me feel good to bring him to
one of her favorite church traditions.
On Saturday morning, Rees meet his friends Jack, Henry and Etta in the park. That
afternoon Rees went with dad to cheer for Xavier. On Easter Sunday, we found another
outdoor service at Miller Outdoor Theatre. Rees was not happy about the wind, but
finally fell asleep under a blanket. That afternoon we went to the park and played. Mom
took about 100 pictures of Rees in his big boy Easter outfit. When we got home, Rees
pulled out his feeding tube, so mom took about 100 more pictures—the first pictures
with no feeding tube and no trach!
Rees is more and more fun. He is experimenting more with his voice and making more
and louder sounds. He loves to laugh. The number one sure thing to make him laugh is
whistling.
We have a busy week this week...cardiologist on Tuesday, neurologist on
Thursday…then our first vacation. We are going to Galveston for two nights. Yea! We
are starting to feel like normal people.
March 15 - Home Alone
What a difference not having a hole in your neck makes! Rees is dramatically a happier
baby with considerably more smiles and laughs. With the trach gone, Rees can splash
in the big bath tub (with mom or dad), snore very loudly keeping mom up at night, and
make new sounds. My favorite new sound is hiccups. Rees often got hiccups before,
but they were silent. Hearing “hic cup” is precious.
Rees seems to be fully adjusted to his new way of breathing. If you think about
snorkeling, even though you are breathing through your mouth, it takes a little getting
use to before you are comfortable. We think it is the same for Rees.
He has reunited with his pacifier and sucking and breathing with no problems. He is
also back to eating his tootsie roll pops, sweet potatoes and teething biscuits. In the
next few weeks we are going work even harder on eating real food. Rees now has 6
teeth with 3 more about to break through the surface.
Rees’ trach stoma site is healing nicely. It looks like a belly button. And just like Rees’
belly button, it will be surgically removed. There is no rush for this procedure, but it will
probably be this summer. Even though his time in the sun has been very limited, Rees
has a slight tan line from his trach ties on the back of his neck.
Last weekend Rees got to see his cousins Thomas and Camryn and even went to a
family dinner party at the Dollingers. This weekend he is planning on going to his
cousins Julian and Aidan’s birthday party.
On Friday, we popped champagne and had a picnic in the back yard celebrating the end
of our very last nursing shift. Although mostly appreciated and needed throughout the
past 9 months, we are thrilled to now have privacy in our home. We can’t express what
a wonderful feeling it is! We are now scouting out sitters to play with Rees until he
starts school this fall at the Center for Hearing and Speech.
We also celebrated by taking down all of the signs posted on the walls around the
house with notes about Rees care and trach precautions. We also put back Rees’ cute
bedding and rug, which were in storage as we were warned they would get worn out by
the traffic of nurses. I think this weekend Dad will transfer the large supply shelving unit
to the garage. It will be nice to have Rees’ room look like a traditional nursery and not a
mini hospital.
To all of our NICU friends, Yes! Rees is planning on attending the
reunion. We can’t wait to see everyone, especially the tiny guys
who are all grown up.
March 6 - At Home Breathing Naturally
Rees is home. We got here on Wednesday afternoon and he is doing great.
So here is the rest of the story….We tried and tried all evening on Monday to cap Rees’
trach. He did ok while he was sleeping, but any time he stirred or woke up, he would
wake up scared and have trouble breathing. We tried and tried and tried. After a long
campaign we finally got a private room and moved in at 10 p.m. We kept trying to cap
the valve, but Rees hated it and his oxygen saturation would immediately drop. One of
the problems was that when he used his beloved green pacifier, he didn’t know how to
suck and breathe at the same time.
At midnight dad went to bed. Mom stayed up trying. At 1 a.m. dad tried to get mom to
rest and let Rees rest, but I just knew Rees could do it if he got use to the new
sensation. I was in tears thinking of what plan B might be. Finally at 1:20 when I put the
cap on, Rees woke up and I did everything I could to keep Rees calm, except give him
his pacifier. This time, Rees’ eyes opened very wide and he hesitantly smiled—just like
he did when he got his hearing aids. He knew something new was happening, and it
wasn’t a bad thing. It was amazing. We played for an hour before he was sleepy
enough to go to sleep with out his pacifier. I stood by his bed all night to keep Rees
calm. We did it!
The doc came by at 8:15 a.m. and the cap was still on. At 8:30 mom was rewarded for
her persistence and got to pull out the trach. Hallelujah! The trach is gone!
Rees is doing very well breathing naturally. He only has problems when he gets very
upset. When he cries it sounds like he is hyperventilating, has trouble catching his
breath and a few times has turned a little blue. So far, he has just needed a little extra
oxygen to get him through the episode. Just in case we have a few emergency meds on
hand if needed. His doctors think that he needs a couple of weeks to get use to the new
way of breathing.
While hanging out in the hospital for observation, we had a busy day of visits from
Physical Therapists and Speech Therapists—we told them Rees needed the day off.
We did have a great consultation with a Feeding Specialist that gave us new exercises
to help Rees. Rees kept the nurses busy. He was constantly wiggling and setting off
the alarms. His multiple wires needed close monitoring to untangle them. Rees did not
want his iv and pulled the tape off with his teeth. We asked to make sure that he
wouldn't get electrocuted by chewing on his toe with the pulse ox.
We came home on Wed. afternoon. Rees was so excited to be at his house with all of
his toys. Because the flu is still running rampant, we have to keep Rees confined until
April.
Thank you all for your many prayers that helped us get to this point. Rees is a true
testament of God’s hands at work.
Other exciting news….we haven’t checked Rees’ size on the growth chart since he
came home from the hospital and he wasn’t on the chart. They charted him in the
hospital and he is now in the 50th-75th percentile for size for his due date age, and 25th-
50th for his real birthday. Wow! His head size is in the normal range now too. Although
the feeding tube is cumbersome to manage, we love it for helping Rees get perfect
nutrition to help him grow.
March 4 - Trach is Gone
The trach is gone! This is the day that the Lord has made. Let us
rejoice, dance, sing, jump for joy and kiss Rees' neck.
More details on the many trials and final tribulation to come later.
March 3 - One Test Passed, One to Go
We packed up the laptap so that all of Rees' fans could get an update while we are at
the hospital.
Rees did well with his procedure this morning. His airways look great. The doc put in a
smaller trach and tonight we are going to try capping the trach. If he can do well
through the night (with part of his airway blocked with the tube) they will remove the
trach tomorrow confident that he is ready. If the trach comes out tomorrow, he will stay
24 hours for observation.
After the procedure Rees was very upset and uncomfortable. After a little morphine he
felt better. During the procedure, the doc put a small stitch in his trach to help support
some tissue that had weakened from the trach tube. This caused blood to come up
from his trach tube. This was very upsetting for mom and dad.
We did a quick trial with the cap late this afternoon, but it didn't go so well. Rees was
furious with the different feeling. The doc said the first time is very disturbing to them.
Hopefully tonight will go well.
Please say big prayers for breathing with ease.
March 2 - Last Day with Trach?
We are packing up for the most exciting hospital trip we’ve ever made—with the
exception of the morning we went to pick up Rees from the NICU and bring him home—
but this time we are fearless.
Rees has to report to the hospital at 6 a.m. and his surgery is scheduled for 7:30. During
the procedure he will get tubes put in both ears, then his ENT will scope his airways via
the trach and make sure all systems are go for decanulation.
Hopefully, if all looks good, much later in the day, after Rees has fully recovered from the
anesthesia, when the doc has finished with his other scheduled appointments for the
day, it will be time to take out the trach. Hopefully they’ll let Rees do the honors.
We are praying huge prayers of thanks that God has given Rees such strength to
overcome so many obstacles, and for the strength He has given mom and dad to care
for such an amazing baby.
Other updates from the week…..Aunt Lynn and Uncle Tim came to see Rees before they
left on vacation. Rees loves his new chicken dance chick. Monday “Grandma” Joan
took Rees for a walk in the Rose Garden. She saved the day again when we were in a
bind with our nurses. Ya Ya and Pop Pop babysat Rees all by themselves—without a
nurse—while mom and dad went to the museum gala on Saturday. They did a great job.
Mom and dad did a good job too on our first time to leave the house together at night
since Rees came home in June—we only called home once.
On Thursday, Rees went to the eye doctor. At our last visit 6 months ago, it was
unknown whether or not Rees could see. At this point we know Rees can see, but we
aren’t sure how well. After a several hour wait we saw the doctor who examined him in
less than a minute. He declared Rees is doing better and diagnosed him with Delayed
Vision Maturation. We have quite a bit of research we need to do on this and a couple
other doctors to talk to, but it seems to be the best possible diagnosis.
February 22 - Let Him Eat Cake!
Today is the 1-year anniversary of Rees’ due date. It seems so long ago since Rees’
birthday on October 30. Because he wasn’t ready in October, today mom gave Rees a
cupcake. Rees had a grand time making an even grander mess squishing the cupcake
into smithereens. He also enjoyed sucking on his sticky fingers. (As a therapeutic note,
it is great that Rees does not have a tactile aversion to getting messy.)
We are still struggling with the transition to the new formula. We had to take a step
back this week and are now at 15%. Hopefully his poops will improve. And for those
who have questioned teething being the culprit for the loose stools…..our fab GI doc
says it is not necessarily an old wives’ tale. There is some actual medical theories to
support it, as well as lots of testimonials from moms.
Rees is making more and more sounds, and they are getting louder and louder. His new
task in hearing/speech therapy is to vocalize when he wants his toys back after we
snatch them from him. He caught on to the game very quickly.
We are now in the single-digit portion of the countdown! We are trying to contain our
anxiousness. We are making lists of all of the things Rees will soon be able to
experience when he is trach free.
February 18 - Big Milestone: Home > NICU
The plan for Rees to give up Alimentum formula for Lent is a much tougher task than we
were hoping for. Rees is still at 20% of the new formula because he is having very loose
stool (but not diarrhea). The doc said before we blame the new formula, to take him off
of the fruit juice because even a small amount can affect the gut. We have switched to
Cherry Pedialyte for his “juice” in his bottle. A huge bummer thing happened this
weekend to throw another variable in the mix. We discovered that possibly 2 days of
his formula was expired. Eeeekkk. We are very upset that we didn’t catch it. We’ll
have to wait a few days to see if the juice switch helps. Another variable, which
“everyone” thinks is a contributor, is teething. Tooth # 6 is just about to surface. So
yes, we are still praying for poop.
Rees is slowly doing better with his eating and drinking. Ya Ya wins a prize for finding a
bottle made from his favorite big green pacifiers.
Valentine’s Day was a huge milestone: Rees has now lived at home longer than at the
hospital. We cannot believe it! The days at the hospital were so long and agonizing.
The days at home are super busy and fly by.
On Saturday, Dad took Rees to his best buddy Joaquin’s birthday party. Joaquin is a
champion 23 weeker too. His girlfriend Sophia was also there. Mom is still sad she
couldn’t go because of work.
February 8 - Eating & Drinking
On Monday, Rees was supposed to start transitioning to his new toddler formula. This
was delayed because his formula is not stocked by anyone because it is very rare
(designed for kids with damaged intestines) and very expensive ($1000 per month---
luckily Rees’ Medicaid helps). We got the formula in on Wednesday and slowly are
starting the transition. He started with 10% of the new stuff and if he tolerates it, every
few days we increase by 10%. We are now up to 20%, but Rees’ stools today were a
little on the loose side. We are saying poop prayers once again that it improves and that
he will tolerate the new formula.
On Monday Rees started getting apricot nectar via an eyedropper. Because he seemed
to do well, on Friday he got a bottle! This is huge! Rees was never expected to take a
bottle. Right now he is mostly playing with it, but he does get a few sucks and swallows
in. It is definitely a good start. Our hearts melt seeing Rees holding that bottle.
Rees now loves his teething biscuits. He has even bitten one in half. Much more ends
up on his face and hands than tummy, but the therapists say getting used to the texture,
including outside the mouth is part of learning to like food.
Rees now has 3 teeth on top and 2 on the bottom. They are very sharp and serrated—
just like a T. rex!
Rees in now sitting on his own for several minutes—almost good enough for us not to
stand guard. He is still working on getting to sitting position on his own.
On Saturday, Rees stopped his Albuteral. This is an inhaled breathing treatment Rees
has gotten several times a day since he left the hospital. We also decreased his QVAR,
another breathing treatment to once a day. When Rees came home from the hospital
he received meds every 2 to 4 hours. Now we are at once a day! Say a big prayer that
his lungs are ready.
On Thursday, mom went outside the city limits without Rees for the first time--very
tough. Cousin Todd and I went to NASA JSC. As special guests, we got to watch the
shuttle launch from Mission Control. It was a once-in-a-lifetime cool thing to do. Thanks
Andy for the invite!
As cool as the space shuttle countdown is, no countdown is more exciting and
anticipated than the trach out countdown. 22 days!
January 31 - You Can't Stop the Rees!
Because Mark and I don’t know all of the words to many songs, we make up words to
different tunes and sing songs about Rees. The hit list includes “Oh When the Rees
Comes Marching In” and "Knick Knack Patty Whack Give a Dog a Bone, Reesy Pie He
Lives at Home” and the latest addition is “You Can’t Stop the Rees” from Hairspray. It
really is our theme song for the last two weeks.
Rees got to hang out with the guys the past couple of weekends. Pop Pop came from
Waco to play two weekends ago. Then last weekend Paw Paw from Indiana came for a
long weekend. He is very proud of how sturdy Rees has become.
Rees has made huge strides with his eating. He is eating 2 to 3 times a day and is now
opening his mouth asking for the next bite. He was falling asleep after a few bites, but
now he eats without fatigue. On Monday, Rees saw the GI doc. She said his progress is
phenomenal. She has cleared Rees to eat anything he/we want and to try liquids
through a sippy cup! Yesterday he got to have a teething biscuit. He was very uncertain
at first, but is getting more and more used to it. On Monday we try the sippy cup. We
stopped one of his intestinal medicines and next week we begin transitioning to a
toddler formula. When he is completely on the toddler formula, it will be enough
calories to leave him off the feeding pump for 8 hours a day. This will be enough time to
really make Rees hungry and motivated to eat lots and lots. We are very excited that we
are on the right track to be rid of the feeding pump sooner than later.
We also saw the Pulmonary doc on Monday who said Rees is the Star of the Pulmonary
Clinic. To our sheer shock, he is taking Rees off of his diuretic and Albuterol breathing
treatments (which we thought he would be on for years). We still can’t believe it. This
week we stopped the diuretic and in two weeks we stop the Albuterol and go down on
his other breathing treatment QVAR.
Rees has also started “pterodactyl screaming.” He uses all of his might to belt out a big
yell. It is quite a sound--and site. He is also starting to have conversations---a big step
forward with his hearing. When we roar, Rees roars back. (Video to come when we
have production time.)
We have had difficulties with our nursing schedule the past couple of weeks with
several days without nurses. Luckily it has coincided with Mom getting more and more
energy and strength. The Gleevec side affects are also gradually getting better. I even
took Rees to a doctors appointment all by myself. Being able to take care of Rees
without a hovering nurse is a liberating feeling of normalcy.
Rees now tips the scales at 19 lbs. 6 oz. and is sitting up for several minutes without
help.
We cant’ describe how proud we are of Rees for working so hard every day. He is
making huge strides in every area and we are completely amazed by how much he
changes on a daily basis. It is absolutely thrilling.
Rees is very lucky to have special honorary Houston grandmas. Grandma Joan sat with
Rees for 4 hours in the car this week while I had to go to an appointment on a nurseless
day. Grandma Suzie brings mom and dad a good meal every week.
January 18 - Oo, Ee, Oo, Ah, Ah
Rees, the listener, is doing an amazing job progressing with his hearing. This week in
speech/hearing therapy Rees demonstrated that he could hear all of the sounds in the
“speech spectrum.” Oo, Ah, Ee, Mm, Ss, Sh are the Ling sounds which are the extreme
sounds in spoken language, so if you hear them, you can hear all of the other sounds.
Rees turns to both sides for all six sounds. (His awesome turning is also connected to
progress with his sitting and oblique strengthening in physical therapy.)
Thursday Rees had his second hearing test in the sound booth with his hearing aids. He
did much better than his first test showing that he is doing a good job “learning to
listen.”
Rees is continuing to work very hard during his physical therapy sessions. He is doing
better at sitting up and is now working on “transitioning” -- from tummy to sitting, from
sitting to standing, standing to sitting, etc.
Rees is also noticing faces more and more. This is evident by the scratches on mom’s
face. The perpetrator seems to be right handed as most of the scratches are on my left
side.
Rees is also starting to smile and laugh more and more. His smiles and laughs are
heavenly.
He is still eating three times a day. After a few bites Rees gets very sleepy and uses his
binki to help him suck down the food. We are still working on finding the best strategy.
Some of the therapists say the more he consumes the better. Others think it doesn’t
matter how much or little he eats as long as he is using good technique. This is a little
frustrating and there really are no right answers.
We have a running countdown until decanulation (the technical term for taking out the
trach) – 42 Days.
January 12 - Trach Removal Countdown: 50 Days
T –50 days until freedom! Rees has a scheduled date to remove the trach: March 3!
That morning we will check into TCH and he will go to the OR to get tubes in his ears
(like many of his cousins, because of fluid build up) and then the doc will scope his
airways all the way down to his lungs to make sure everything looks good. If all goes
according to plan, later in the day his trach will be removed. We should only have to
stay one night for observation.
Yesterday when we went to see the doc, we had a long list of reasons why we should
remove the trach as soon as possible. We’ve always been told probably March or April.
And we campaigned hard for March 1. We barely got to bullet point number three, when
the doc chuckled and stopped us saying let’s look at the calendar. March 3 it is! (March
1 is a Saturday.)
We are bursting with joy! His doctor is very proud of Rees for his remarkable progress
and how far he has come. With this news Mom and Dad feel we have done a good job
keeping Rees on the right track. We are excited have an end in site.
We can’t wait for Rees to have an uninhibited bath when he can splash all he wants.
We can’t wait to plant millions of kisses on his sweet neck that has been covered with
thick ties holding the trach in place for the past 8 months.
We can’t wait to take Rees on outings other than doctor visits, and with significantly
less medical equipment in tow.
We just can’t wait. (But, of course we will---in the past two years we have learned
patient determination, with lots of prayers, is required in our medical battles.)
Before his doctor’s appointment yesterday, Rees was trying to show me he didn’t want
the trach any more either by pulling it out. Nurse mom sprung into action and replaced it
quickly. The more active and strong he becomes the harder his trach is to manage. He
can bust out of his Velcro swaddle blanket now, so for nightly trach care we have to put
Rees to sleep before we attempt to change the ties.
January 8 - Breakfast, Lunch & Dinner
Rees is now eating breakfast, lunch and dinner! We are thrilled out of our minds with
the progress Rees has made with his feeding. We (Rees, mom, dad & therapists) are
working as hard as we can to get Rees to be an eater. Everything has kicked up a notch
and Rees is going with the program.
The new routine includes eating small amounts for breakfast and lunch, and then as
much as he’ll eat at night (1-2 tablespoons---which seems like a lot when you are taking
little bites). We are also starting the brushing therapy again for a few weeks. The
therapist says this will help since Rees has had a growth spurt and we are really
pushing him with the oral activity.
We are so excited as this is a huge step towards graduating from feeding tubes in the
nose and not needing a surgically placed feeding tube in his tummy. We still have a long
ways to go before the feeding tube is gone, but because so many babies like Rees
develop an oral aversion and refuse to eat, his eating is wonderful wonderful news.
Mark and I got Rees girlfriend Sophia a set of the colorful dipping sticks for her birthday
because she is working on eating too. After looking at the package we laughed so
hard. We had been feeding Rees with the colorful textured handle, instead of the short
stubby spoon. Ha! Luckily this goof did not hinder Rees’ progress. Since we started
using the right end, Rees can get to the food much easier.
Rees went to his first party on Saturday. It was Sophia’s first birthday. It was so nice to
go somewhere other than the doctor’s office. Rees got to see his buddy Joaquin also. It
was so good to see our NICU friends for a happy affair and not in the stressful NICU.
Rees is also sitting up so well. Thursday he sat up 34 seconds with his physical
therapist. Over the weekend he was sitting for several minutes—too long to count. He
is getting more and more stable. He is working now on getting to the sitting position by
himself and catching himself before he tumbles over. Rees has done well with is
oblique tape on his tummy, so today tape was added to his back.
My back-ordered birthday present from Rees came yesterday. Yiippee! I finally have a
Mrs. Potts & Chip characters from Beauty and the Beast. I love them. I’ve wanted a
Mrs. Potts ever since I got married and especially after my little tea cup came along.
January 6 - Happy Birthday Amy!
On January 3rd, Mark and Rees joined together to celebrate Amy's birthday. It was
especially special that we were able to celebrate in the comforts of our home with
Rees at our side.
Both Rees and I are blessed to have Amy in our lives. She is the glue that holds the
household together! Happy birthday Amy, we love you!
January 3 - Very Happy New Year
On New Year’s Eve the Potts crew was celebrating the coming of a new year and
wonderful news from our appointment with a pediatric developmental specialist.
We were dreading the appointment because the doctor is known for being harsh and
negative. To our extreme delight, the doctor reported that he was very pleased with
Rees’ progress since he last saw him in the NICU. Luckily Rees stayed awake long
enough to show off most of his tricks. Although Rees is behind developmentally, the
doc felt that it is because Rees has spent all of his energy struggling medically and that
as soon as all of the issues are resolved, Rees will catch up. This is the best report we’
ve had concerning Rees’ development.
Rees is doing better and better sitting up without any help. Today his physical therapist
taped his stomach with special tape that is supposed to help stimulate his ab muscles.
He will wear the “kinesio” tape until Tuesday. If all goes well, the next step is to tape his
back too. Very weird, but we’ve done weirder—we’ll try anything that may give Rees a
boost.
Rees is getting a little impatient with his feeding. When he is tired, his food drools out
his mouth. When he is not sleepy, he doesn’t want to sit still to eat. We’ve asked our
therapists to put feeding on the front burner because we really want to make progress
in this area. With the trach coming out in a few months, we want the feeding tube to
closely follow.
Mom had a great birthday today. Last year Rees had a balloon delivered to me on my
perch at his bedside in the NICU. This year I had balloons in my bed for a birthday
breakfast with Rees.
June 24 - Happy Father's Day & New House
Father’s Day 2006 – Found out Amy was pregnant
Father’s Day 2007 – Spent the night with Rees in the hospital (one of the tests before
Rees could come home)
Father’s Day 2008 – Rees went to Home Depot with Dad
We moved on Thursday, so we woke up in our new house on Friday, June 20 – Rees’ 1-
year anniversary for coming home. Moving out of the “hospital house” was a great way
to celebrate this milestone.
Rees loves his new house—especially the new lights.
New Address:
4002 Drummond
Houston, Tx 77025
Many thanks to all of our helpers who kept Rees entertained, and out of the way, during
the move: Cousin Todd, Cousin Jenny and Uncle Brit; and the master packer and
unpacker Ya Ya; and the utility benefactor Ruth for the dryer.
Rees has been having trouble spitting up the last couple of weeks. It is unclear what the
cause is—we think it is a cross between reflux, congestion and the feeding tube making
it harder to clear his throat. We are trying different combinations of meds to help.
June 11 - Rees is crawling!
Rees is officially mobil! On Monday he a couple of crawl steps and by Tuesday night he
was making bee-lines for his toys. Every time he gets faster and faster.
The other exciting thing—although completely overshadowed by crawling—was that we
got the keys to our new house. Then we got sad news. Our fabulous babysitter isn’t
going to be able to help us after the month is over, so we have to start our search over
again.
Thank you to cousin Todd—he watched Rees while I went to get my blood work done on
Tuesday morning. He and Rees are big buds.
June 7 - Standing, Jumping & Hearing Better
It has been so long since our last update—we have been swamped.
We are slowly making progress with eating. Rees now actually moves his mouth and
tongue and looks like a real eater. He is getting more food down—about half of a jar of
food at a setting. We are still working on liquids in the sippy cup too.
Rees is continuing to amaze us everyday with his strength and determination. He is
pulling up to stand on anything he can grab—crib, toys, people and mom’s teeth. He isn’
t exactly crawling but he can scoot pretty far distances. When he is playing alone he
will be at one end of his giant mat with one toy and a moment later on the opposite side
with a different toy. Whenever a willing volunteer is there to hold him, he goes crazy
jumping. It is amazing how strong his legs are—once smaller than my finger, now
bigger around than my arm
His ability to play on his own has come in very handy as we prepare for our big move.
We have been busy purging and packing. Ya Ya totally rocked this week packing up
dozens of boxes. We close on the house on the 10th and plan to move in on the 19th
after doing a little work.
We have big news on the hearing front. Rees recently had his 3rd ABR hearing test,
which measures the brain’s response to sound. His hearing has significantly improved.
We were told that improvement of his type of hearing loss (sensorial neural) was not
possible. Good thing we never tell Rees what his medical expectations are! He has
surpassed them all! His audiologist turned down the level of his hearing aids. We are
thrilled with this improvement. Now Rees can hear sound, even though not perfectly
clear, without his hearing aids in, which is wonderful since there are a few situations
that he can’t wear the aids—sleeping, bathing, swimming.
Yes, swimming! Rees was cleared by his ENT to go swimming since his trach stoma
has completely healed. So, we went at the first chance we got. Rees and mom went to
cousin Trey and Niki’s wedding in Bastrop and Rees had a very fun time spending time
with all his cousins, especially boogying on the dance floor. There was a fabulous pool
at the resort. Rees was a little confused in the big pool at first, but eventually had fun
jumping on the steps. Cousin Thomas said Rees was very brave. Aunt Petey road with
us on our roadtrip, since dad was in Indiana for Grandma and Grandpa Campbell’s 90th
birthday bash. Rees is planning on going to the next party.
May 12 - Happy Mother's Day
We have had the busiest week that it is hard to know where to start.
Rees went to the pediatrician last week for his 18-month check up. The ears look
excellent. His glasses are making a fantastically noticeable difference in just about
everything. He has never pulled them off on purpose. Occasionally he knocks them
crooked when he is wiggling around. He is reaching, grabbing and looks like crawling
will be in the near future (oh no and yea!). He is also vocalizing more and more. He is
wiggling and playing non-stop, always happy. When he gets worn out he gets deliriously
excited and drains every last bit of energy, then conks out.
I got two wonderful Mother’s Day presents. Rees’ gift was moving up to 100% of the
new formula. So far, so good. For so long he was connected to the food pump for 24
hours a day. Now we are down to 12 hours. We were going to use all of the “off time”
during the day, but mom is in desperate need of sleep, so for once we are all three
sleeping through the night. I can’t explain how much better I am feeling.
My Mother’s Day present from Mark was a new house. We found a great house in a
great neighborhood very close to our current place. We found the listing last Sunday,
saw and made an offer on Monday, and the sellers accepted our offer on Tuesday. We
are scheduled to close in June. We are very excited.
Rees made his first trip to Bridge City and surprised his Great-Grandma LuLu for Mother’
s Day. She was shocked!
Last week Rees went to his first lecture at the museum. He got to sit with Dad in the
private luxury skybox with Dave, who is recruiting Rees to be his new IMAX apprentice.
Rees bought an autographed book and got his picture with the author/astronaut too.
Dad also had to go on a business trip to Midland. He was gone an entire 24 hours. Rees
and mom survived, but were VERY glad when he came home.
Rees’ big party this week was cousin Todd’s graduation party. He had lots of fun playing
with his cousins.
Last week was also Rees’ first week to start going to his school, The Center for Hearing
and Speech, for his therapy sessions. It is fun to also see the older kids in class. On
Friday before our session there was a Mother’s Day breakfast. During the program a
few moms shared their stories. On of the moms had a daughter that went through a
NICU experience similar to ours. Her daughter is doing great. Another mom, whom I
couldn’t place her accent, said they researched the best place in the world to get help
for their son, so they said good bye to their family in Oman, Jordan and moved to
Houston for CHS and TCH. I got chills. Houston is such a phenomenal place.
April 29 - Let there be sight!
Rees got his glasses today! It was expected for the fitting to take over an hour, but
because Rees was so good, it only took about 15 minutes. They have slipped down a
few times, but he is leaving them alone. Maybe he is already used to having something
behind his ears. We can already tell that he is seeing more. He has been happily
laughing at his toys and focusing on things that are not right in front of his face. The
sweetest thing is that he is definitely making eye contact. It melts our hearts for Rees to
gaze into our eyes.
How can they tell what strength to make the glasses? Not exactly sure, but this is our
guess: When we saw the eye doctor she looked in Rees’ eyes with prisms and different
lenses. When she got to the lens she thought corrected the shape of his eyes, that is
the prescription. (Instead of when adults go for an eye exam and they go through
multiple lenses saying “This one, or this one. This one, or this one.”)
We are so excited for Rees’ world to open up with his new glasses. His frames came
with magnetic polarized sunglasses that easily snap on so he can be ready for the
sunshine in seconds.
We saw the ENT on Friday and Rees ears looked much better. They got the culture back
and switched his drops and antibiotics, which he needs for another week. We will be
glad when our first ear infection is behind us—especially the antibiotics which are
interfering with Rees’ sensitive GI tract and delaying our switch to the new formula. He
is now wearing both his hearing aids. What a bummer is was to keep him from heaing.
Rees is now proficient at sitting up by himself. On Saturday night at 4:30 a.m., I was
awakened by Rees talking. He was sitting up in his bed. Mark had to lower his bed so
he can’t escape. Mom can barely reach to pick him up. Rees also has 3 new bottom
teeth making an appearance.
On Tuesday Rees went shopping with Barbara. I heard he was looking for a mother's
day present in the new gem store at the museum. On Wednesday Rees went with mom
to my ob appointment. He got to see his first very first doc and the doc who delivered
him, plus several other docs who helped during the crazy pregnancy.
On Saturday Rees went to his friend Anthony’s first birthday. We got to see Anthony
right after he was born since Rees was in the hospital then. Rees is quite the party
animal since his trach has been out - attending parties 7 weekends in a row!
On Sunday was the March for Babies. It was a beautiful day. The course was 5 miles
and I knew I couldn’t make it that far, so I was going to wait at the finish line. But, we
found a short cut. I was so excited I got to march too. Next year my goal is to do the
entire 5 miles. We marched with Rees’ Pop Pop, Bennet’s family including his twin Ellie,
Lily’s family and her twin Sophia, Landon’s family including his triplets Cade and Aaron,
and 40,000 others. The Potts crew raised over $1000 for the March of Dimes. It isn’t too
late to make a donation to support research to save the lives of the tiniest babies—you
can just click on one of the links in the blue box above. Thank you to Angie, Heather,
Brandon and Nozar for organizing our teams and to all of you who already supported the
March.
April 20 - Ears on the Mend
On Monday Rees went to The Aquarium (a cool Houston restaurant with giant
aquariums) to celebrate Dad’s new job. Rees enjoyed the elaborate lighting in the
elevators best. Mark left the consulting company to work for his client Kinder Morgan.
Way to go Dad on this great opportunity!
After going to the pediatrician office Sunday morning, we also went to the ENT on
Monday and Tuesday, and go back again on Friday. We were panicked that his
remaining hearing may be at risk. The ENT assured us that this infection had no risk of
additional hearing loss. One ear is almost well and the other is finally on the mend and
is no longer inflamed and beat red. Rees is so tough that he only cries if we touch it or
put in the drops. Right now Rees can only wear one hearing aid for the short hour each
week that his hearing therapist is here. He had so much fun playing with his loud toys
with Hannah. Hopefully we get a good report on Friday.
The antibiotics have put a kink in the progress with the formula, since they too can
cause tummy problems. We are holding at 80%.
On Wednesday Rees had a play date with his friend Malik—he was Rees’ very first
buddy from the NICU. Malik is now walking and climbing. We are so proud of him.
On Thursday, Mom actually left the house without Rees. Rees stayed with his sitter for
1 hour and 8 minutes. All parties involved did well.
I forgot to report that my labs from MD Anderson came back and the doc says
everything is still fine. He is keeping my meds at the current level. Yipppee. My tummy
is doing better at this dose.
Thank you to everyone who has sponsored us in the March for Babies! We are blown
away with the showing of generosity by Rees’ fans.
April 20 - Eyes, Ears & Gut
On Wednesday, I went with Mark to the Gathering of Heroes honoring the gold level
blood donors in Houston. Last year Mark donated over 2 gallons of platelets. It was
very overwhelming to see the hundreds of caring people who regularly share their most
precious resource with people like me and Rees who need a boost to get them through
a critical time.
On Thursday Rees saw a new eye doctor: a neuro ophthalmologist who gave us the
most thorough explanation of Rees’ vision that we’ve had. She is very pleased with
where Rees is for his history. He has a small cataract in one eye caused by his steroid
breathing treatments, but it should cause any problems or require surgery. Right now
Rees is very near sighted and he can see best just 1 foot away from his face. His vision
is expected to continue to mature and get better, but he will most likely always need
correction. The great news is that his vision getting worse is very unlikely. After the
appointment, we went straight to the eyeglass store that specializes in babies. They
had a whole room of cute kids glasses. They ordered several pairs in Rees’ size for him
to try next week. We are so excited and can’t wait to see Rees’ expression when he
gets a better look at the world.
We also saw our fab GI doc on Thursday. She was thrilled with Rees’ progress with
trying foods by mouth, transitioning to the new formula and speeding up his feeds. (His
feed pump malfunctioned recently and was running at a faster rate finishing a bottle in 3
hours instead of 4. Rees handled it nicely so we stuck with the fast pace.) Rees is now
up to 80% on the new formula. When we get to 100%, our next task is to continue to
speed up the pace of the pump until he finishes a bottle in an hour. This will mean only 4
hours on the pump a day—giving Rees 20 hours to wiggle and roll without getting
tangled in the feeding tube.
Mom had a very busy week at the Museum and YaYa watched Rees all by herself. She
helped with all of his therapies too. She is a pro.
This weekend Rees made his first overnight trip to Waco. He went to cousin Thomas’ t-
ball game, a party and a BU baseball game. The trip was cut a little short. On Sunday
we had to rush back to Houston because one of his ears was very red and hurt really
bad. He got new meds for the irritation. One of them was a flashback from the NICU:
clindamycin. We didn’t even know that came in an oral take home version. Because his
ears are still not well, Rees hasn’t been able to wear his hearing aids for a whole week.
The good news is he is responding to a few sounds without his aids.
April 14 - Silence for Rees :(
Tough week ahead. This weekend Rees came down with his first ear infection. You
wouldn’t know he was sick. He isn’t crying or cranky, just couple extra naps during the
day. He has to be on eardrops for 10 days and can’t wear his hearing aids. Mom and
dad are VERY SAD he won’t be able to listen for such a long time. It breaks my heart to
see him playing with his favorite toys whose sounds usually make him smile. We feel
like our giant steps of progress on all fronts may be derailed for this time period. Ya Ya
is here this week to help during a busy museum week for mom.
Now for the good news of the last couple of weeks….Rees is doing a little bit better with
his eating. His latest addition to his tastings are Gerber cheetos. His favorite is still is
tootsie roll pops that he now holds all by himself. The biggest recent accomplishment is
using a sippy cup for juice. He is doing few more sips every day. After spending at least
$50 on different kinds of fancy sippy cups to test to see what would be best for Rees,
the conclusion was the kind from the dollar store—of course. We are now up to 70% of
the new formula. Slowly but surely.
In the last couple of weeks, we’ve only had a couple of doctor appointments. Two
weeks ago we saw a PM&R doc (physical med and rehab). She did a developmental
assessment and put Rees at about 9 to 10 months, which showed steady progress
from the last big evaluation in December. All assessments have Rees’ “developmental”
age close to his “coming home” age.
Last week we saw his pulmonologist and got a great report. He discontinued Rees’ last
lung medication (inhaled puff)! AND said we could start weaning off of the all-night
oxygen monitor at night per mom’s comfort level. This is quite a graduation. He also
cleared Rees for his first big vacation on a plane to the beach to meet his Potts cousins,
aunts and uncles this summer. We don’t have another appointment until September
when we start planning for RSV season.
God has seemed to put angels in place when we really need them and he sent one to
our house this week. We found a baby sitter for Rees, so mom can start getting more
non-Rees work done. We never thought we could find someone we feel absolutely
comfortable with, but we found someone above and beyond our wish list. She is going to
come a few days in April and then a regular day schedule in May.
On the social front, Rees is becoming a party animal. He got to see his cousins Thomas
and Camryn last weekend and go to his first big party. Thomas is letting all his friends
know that Aunt A let him touch his cousin Rees, but just on his feet. Reesy also got to
go out to a fancy dinner with Pop Pop at Chruascos—not the best kid restaurant, but the
grown-ups really needed a good steak and tres leches. Rees finally made his first trip
with mom to the museum to see the dinosaurs and meet all of his friends there. Rees
also helped mom and dad celebrate their 3rd anniversary—a wonderful contrast to our
2nd anniversary when Rees was struggling to breath and eat in the NICU. Rees was
quite social at Skip and Casey’s engagement party too.
Rees has a new cousin on the way in Austin! Congrats Toby and Renee. We are so
excited for you.
March 29 - Rees' 1st Vacation
Rees got excellent reports at his appointments this week. On Tuesday he had an
echocardiogram to check on the clot in his right atrium. Then we saw the cardiologist
to get the results: the clot is gone! It has most likely dissolved. We have been officially
cleared by cardiology and don’t need to go back. A big check off the list.
On Thursday we saw the neurologist. He was very proud of Rees for all of his
tremendous progress in the last 6 months. In a group of babies as early and as sick as
Rees was, he would put Rees in the top 5% in neurological development. He also said
Rees’ happy and busy personality will suit him very well as Reesy will have to continue
to work very hard in his therapies and in school to overcome his setbacks. We are very
happy with this news.
After the appointment on Thursday we headed straight to Galveston for our first family
vacation. Although we have been to exotic, far-away destinations, Mark and I both
agreed this was the most fabulous vacation we’ve ever had in our lifetime. It was so
incredible to see our little angel laughing and enjoying the new sights, sounds and
sensations. He smiled in the sea breeze, squished his toes in the sand, and even put his
sandy hands in his mouth. (Amazingly mom didn’t have a heart attack.) We had an
absolutely wonderful time being normal people.
On Saturday we headed back to Houston to the NICU reunion where we saw several of
Rees’ nurses, doctors and friends. It was great to see how much all of the tiny babies
have grown.
We are starting to make progress with switching to the new formula. We are now up to
50/50. We are hoping to be at 100% in a month. And for all of you who have helped pray
for poop….Rees is now for the first time producing lumps. Each one brings lots of
excitement at the Potts house.
March 24 - Rees Springs Forward
RSV is officially over in Texas and with the trach out, Rees has a significantly less risk
of infection, so we are cautiously taking Rees on outings. Last weekend he went to his
cousins Julian and Aidan’s 2nd birthday party. When we started walking up the drive to
the party in the backyard, we heard “here comes Rees.” By the time we got to the
backyard, all of the partygoers turned into the paparazzi. All cameras were focused on
Rees. On Sunday we visited his friends Sophia and Joaquin, who are both doing great.
During the week cousin Troy stopped by for a visit and meet Rees for the first time.
Mom had a check up at MD Anderson on Tuesday and got a good report. The lab results
will come back in a couple of weeks.
You would think that we would pick any other place to go visit than the hospital, but we
couldn’t wait to bring Rees to see his neonatologists. On Wednesday we surprised
them. They were very happy to see what a huge, happy guy Rees has become. Rees
even got to sneak to see his nurses Romannee and Tiffany. Rees gave Romannee very
odd looks when she gave him a refresher Chinese lesson. It was so awesome to see
the crew that helped our little angel beat the odds again and again.
On Friday, mom took Rees to the Stations of the Cross. Rees still can’t go inside church,
so luckily one of our churches does the service outdoors with actors—in Spanish. Even
though I couldn’t understand much of the words, it made me feel good to bring him to
one of her favorite church traditions.
On Saturday morning, Rees meet his friends Jack, Henry and Etta in the park. That
afternoon Rees went with dad to cheer for Xavier. On Easter Sunday, we found another
outdoor service at Miller Outdoor Theatre. Rees was not happy about the wind, but
finally fell asleep under a blanket. That afternoon we went to the park and played. Mom
took about 100 pictures of Rees in his big boy Easter outfit. When we got home, Rees
pulled out his feeding tube, so mom took about 100 more pictures—the first pictures
with no feeding tube and no trach!
Rees is more and more fun. He is experimenting more with his voice and making more
and louder sounds. He loves to laugh. The number one sure thing to make him laugh is
whistling.
We have a busy week this week...cardiologist on Tuesday, neurologist on
Thursday…then our first vacation. We are going to Galveston for two nights. Yea! We
are starting to feel like normal people.
March 15 - Home Alone
What a difference not having a hole in your neck makes! Rees is dramatically a happier
baby with considerably more smiles and laughs. With the trach gone, Rees can splash
in the big bath tub (with mom or dad), snore very loudly keeping mom up at night, and
make new sounds. My favorite new sound is hiccups. Rees often got hiccups before,
but they were silent. Hearing “hic cup” is precious.
Rees seems to be fully adjusted to his new way of breathing. If you think about
snorkeling, even though you are breathing through your mouth, it takes a little getting
use to before you are comfortable. We think it is the same for Rees.
He has reunited with his pacifier and sucking and breathing with no problems. He is
also back to eating his tootsie roll pops, sweet potatoes and teething biscuits. In the
next few weeks we are going work even harder on eating real food. Rees now has 6
teeth with 3 more about to break through the surface.
Rees’ trach stoma site is healing nicely. It looks like a belly button. And just like Rees’
belly button, it will be surgically removed. There is no rush for this procedure, but it will
probably be this summer. Even though his time in the sun has been very limited, Rees
has a slight tan line from his trach ties on the back of his neck.
Last weekend Rees got to see his cousins Thomas and Camryn and even went to a
family dinner party at the Dollingers. This weekend he is planning on going to his
cousins Julian and Aidan’s birthday party.
On Friday, we popped champagne and had a picnic in the back yard celebrating the end
of our very last nursing shift. Although mostly appreciated and needed throughout the
past 9 months, we are thrilled to now have privacy in our home. We can’t express what
a wonderful feeling it is! We are now scouting out sitters to play with Rees until he
starts school this fall at the Center for Hearing and Speech.
We also celebrated by taking down all of the signs posted on the walls around the
house with notes about Rees care and trach precautions. We also put back Rees’ cute
bedding and rug, which were in storage as we were warned they would get worn out by
the traffic of nurses. I think this weekend Dad will transfer the large supply shelving unit
to the garage. It will be nice to have Rees’ room look like a traditional nursery and not a
mini hospital.
To all of our NICU friends, Yes! Rees is planning on attending the
reunion. We can’t wait to see everyone, especially the tiny guys
who are all grown up.
March 6 - At Home Breathing Naturally
Rees is home. We got here on Wednesday afternoon and he is doing great.
So here is the rest of the story….We tried and tried all evening on Monday to cap Rees’
trach. He did ok while he was sleeping, but any time he stirred or woke up, he would
wake up scared and have trouble breathing. We tried and tried and tried. After a long
campaign we finally got a private room and moved in at 10 p.m. We kept trying to cap
the valve, but Rees hated it and his oxygen saturation would immediately drop. One of
the problems was that when he used his beloved green pacifier, he didn’t know how to
suck and breathe at the same time.
At midnight dad went to bed. Mom stayed up trying. At 1 a.m. dad tried to get mom to
rest and let Rees rest, but I just knew Rees could do it if he got use to the new
sensation. I was in tears thinking of what plan B might be. Finally at 1:20 when I put the
cap on, Rees woke up and I did everything I could to keep Rees calm, except give him
his pacifier. This time, Rees’ eyes opened very wide and he hesitantly smiled—just like
he did when he got his hearing aids. He knew something new was happening, and it
wasn’t a bad thing. It was amazing. We played for an hour before he was sleepy
enough to go to sleep with out his pacifier. I stood by his bed all night to keep Rees
calm. We did it!
The doc came by at 8:15 a.m. and the cap was still on. At 8:30 mom was rewarded for
her persistence and got to pull out the trach. Hallelujah! The trach is gone!
Rees is doing very well breathing naturally. He only has problems when he gets very
upset. When he cries it sounds like he is hyperventilating, has trouble catching his
breath and a few times has turned a little blue. So far, he has just needed a little extra
oxygen to get him through the episode. Just in case we have a few emergency meds on
hand if needed. His doctors think that he needs a couple of weeks to get use to the new
way of breathing.
While hanging out in the hospital for observation, we had a busy day of visits from
Physical Therapists and Speech Therapists—we told them Rees needed the day off.
We did have a great consultation with a Feeding Specialist that gave us new exercises
to help Rees. Rees kept the nurses busy. He was constantly wiggling and setting off
the alarms. His multiple wires needed close monitoring to untangle them. Rees did not
want his iv and pulled the tape off with his teeth. We asked to make sure that he
wouldn't get electrocuted by chewing on his toe with the pulse ox.
We came home on Wed. afternoon. Rees was so excited to be at his house with all of
his toys. Because the flu is still running rampant, we have to keep Rees confined until
April.
Thank you all for your many prayers that helped us get to this point. Rees is a true
testament of God’s hands at work.
Other exciting news….we haven’t checked Rees’ size on the growth chart since he
came home from the hospital and he wasn’t on the chart. They charted him in the
hospital and he is now in the 50th-75th percentile for size for his due date age, and 25th-
50th for his real birthday. Wow! His head size is in the normal range now too. Although
the feeding tube is cumbersome to manage, we love it for helping Rees get perfect
nutrition to help him grow.
March 4 - Trach is Gone
The trach is gone! This is the day that the Lord has made. Let us
rejoice, dance, sing, jump for joy and kiss Rees' neck.
More details on the many trials and final tribulation to come later.
March 3 - One Test Passed, One to Go
We packed up the laptap so that all of Rees' fans could get an update while we are at
the hospital.
Rees did well with his procedure this morning. His airways look great. The doc put in a
smaller trach and tonight we are going to try capping the trach. If he can do well
through the night (with part of his airway blocked with the tube) they will remove the
trach tomorrow confident that he is ready. If the trach comes out tomorrow, he will stay
24 hours for observation.
After the procedure Rees was very upset and uncomfortable. After a little morphine he
felt better. During the procedure, the doc put a small stitch in his trach to help support
some tissue that had weakened from the trach tube. This caused blood to come up
from his trach tube. This was very upsetting for mom and dad.
We did a quick trial with the cap late this afternoon, but it didn't go so well. Rees was
furious with the different feeling. The doc said the first time is very disturbing to them.
Hopefully tonight will go well.
Please say big prayers for breathing with ease.
March 2 - Last Day with Trach?
We are packing up for the most exciting hospital trip we’ve ever made—with the
exception of the morning we went to pick up Rees from the NICU and bring him home—
but this time we are fearless.
Rees has to report to the hospital at 6 a.m. and his surgery is scheduled for 7:30. During
the procedure he will get tubes put in both ears, then his ENT will scope his airways via
the trach and make sure all systems are go for decanulation.
Hopefully, if all looks good, much later in the day, after Rees has fully recovered from the
anesthesia, when the doc has finished with his other scheduled appointments for the
day, it will be time to take out the trach. Hopefully they’ll let Rees do the honors.
We are praying huge prayers of thanks that God has given Rees such strength to
overcome so many obstacles, and for the strength He has given mom and dad to care
for such an amazing baby.
Other updates from the week…..Aunt Lynn and Uncle Tim came to see Rees before they
left on vacation. Rees loves his new chicken dance chick. Monday “Grandma” Joan
took Rees for a walk in the Rose Garden. She saved the day again when we were in a
bind with our nurses. Ya Ya and Pop Pop babysat Rees all by themselves—without a
nurse—while mom and dad went to the museum gala on Saturday. They did a great job.
Mom and dad did a good job too on our first time to leave the house together at night
since Rees came home in June—we only called home once.
On Thursday, Rees went to the eye doctor. At our last visit 6 months ago, it was
unknown whether or not Rees could see. At this point we know Rees can see, but we
aren’t sure how well. After a several hour wait we saw the doctor who examined him in
less than a minute. He declared Rees is doing better and diagnosed him with Delayed
Vision Maturation. We have quite a bit of research we need to do on this and a couple
other doctors to talk to, but it seems to be the best possible diagnosis.
February 22 - Let Him Eat Cake!
Today is the 1-year anniversary of Rees’ due date. It seems so long ago since Rees’
birthday on October 30. Because he wasn’t ready in October, today mom gave Rees a
cupcake. Rees had a grand time making an even grander mess squishing the cupcake
into smithereens. He also enjoyed sucking on his sticky fingers. (As a therapeutic note,
it is great that Rees does not have a tactile aversion to getting messy.)
We are still struggling with the transition to the new formula. We had to take a step
back this week and are now at 15%. Hopefully his poops will improve. And for those
who have questioned teething being the culprit for the loose stools…..our fab GI doc
says it is not necessarily an old wives’ tale. There is some actual medical theories to
support it, as well as lots of testimonials from moms.
Rees is making more and more sounds, and they are getting louder and louder. His new
task in hearing/speech therapy is to vocalize when he wants his toys back after we
snatch them from him. He caught on to the game very quickly.
We are now in the single-digit portion of the countdown! We are trying to contain our
anxiousness. We are making lists of all of the things Rees will soon be able to
experience when he is trach free.
February 18 - Big Milestone: Home > NICU
The plan for Rees to give up Alimentum formula for Lent is a much tougher task than we
were hoping for. Rees is still at 20% of the new formula because he is having very loose
stool (but not diarrhea). The doc said before we blame the new formula, to take him off
of the fruit juice because even a small amount can affect the gut. We have switched to
Cherry Pedialyte for his “juice” in his bottle. A huge bummer thing happened this
weekend to throw another variable in the mix. We discovered that possibly 2 days of
his formula was expired. Eeeekkk. We are very upset that we didn’t catch it. We’ll
have to wait a few days to see if the juice switch helps. Another variable, which
“everyone” thinks is a contributor, is teething. Tooth # 6 is just about to surface. So
yes, we are still praying for poop.
Rees is slowly doing better with his eating and drinking. Ya Ya wins a prize for finding a
bottle made from his favorite big green pacifiers.
Valentine’s Day was a huge milestone: Rees has now lived at home longer than at the
hospital. We cannot believe it! The days at the hospital were so long and agonizing.
The days at home are super busy and fly by.
On Saturday, Dad took Rees to his best buddy Joaquin’s birthday party. Joaquin is a
champion 23 weeker too. His girlfriend Sophia was also there. Mom is still sad she
couldn’t go because of work.
February 8 - Eating & Drinking
On Monday, Rees was supposed to start transitioning to his new toddler formula. This
was delayed because his formula is not stocked by anyone because it is very rare
(designed for kids with damaged intestines) and very expensive ($1000 per month---
luckily Rees’ Medicaid helps). We got the formula in on Wednesday and slowly are
starting the transition. He started with 10% of the new stuff and if he tolerates it, every
few days we increase by 10%. We are now up to 20%, but Rees’ stools today were a
little on the loose side. We are saying poop prayers once again that it improves and that
he will tolerate the new formula.
On Monday Rees started getting apricot nectar via an eyedropper. Because he seemed
to do well, on Friday he got a bottle! This is huge! Rees was never expected to take a
bottle. Right now he is mostly playing with it, but he does get a few sucks and swallows
in. It is definitely a good start. Our hearts melt seeing Rees holding that bottle.
Rees now loves his teething biscuits. He has even bitten one in half. Much more ends
up on his face and hands than tummy, but the therapists say getting used to the texture,
including outside the mouth is part of learning to like food.
Rees now has 3 teeth on top and 2 on the bottom. They are very sharp and serrated—
just like a T. rex!
Rees in now sitting on his own for several minutes—almost good enough for us not to
stand guard. He is still working on getting to sitting position on his own.
On Saturday, Rees stopped his Albuteral. This is an inhaled breathing treatment Rees
has gotten several times a day since he left the hospital. We also decreased his QVAR,
another breathing treatment to once a day. When Rees came home from the hospital
he received meds every 2 to 4 hours. Now we are at once a day! Say a big prayer that
his lungs are ready.
On Thursday, mom went outside the city limits without Rees for the first time--very
tough. Cousin Todd and I went to NASA JSC. As special guests, we got to watch the
shuttle launch from Mission Control. It was a once-in-a-lifetime cool thing to do. Thanks
Andy for the invite!
As cool as the space shuttle countdown is, no countdown is more exciting and
anticipated than the trach out countdown. 22 days!
January 31 - You Can't Stop the Rees!
Because Mark and I don’t know all of the words to many songs, we make up words to
different tunes and sing songs about Rees. The hit list includes “Oh When the Rees
Comes Marching In” and "Knick Knack Patty Whack Give a Dog a Bone, Reesy Pie He
Lives at Home” and the latest addition is “You Can’t Stop the Rees” from Hairspray. It
really is our theme song for the last two weeks.
Rees got to hang out with the guys the past couple of weekends. Pop Pop came from
Waco to play two weekends ago. Then last weekend Paw Paw from Indiana came for a
long weekend. He is very proud of how sturdy Rees has become.
Rees has made huge strides with his eating. He is eating 2 to 3 times a day and is now
opening his mouth asking for the next bite. He was falling asleep after a few bites, but
now he eats without fatigue. On Monday, Rees saw the GI doc. She said his progress is
phenomenal. She has cleared Rees to eat anything he/we want and to try liquids
through a sippy cup! Yesterday he got to have a teething biscuit. He was very uncertain
at first, but is getting more and more used to it. On Monday we try the sippy cup. We
stopped one of his intestinal medicines and next week we begin transitioning to a
toddler formula. When he is completely on the toddler formula, it will be enough
calories to leave him off the feeding pump for 8 hours a day. This will be enough time to
really make Rees hungry and motivated to eat lots and lots. We are very excited that we
are on the right track to be rid of the feeding pump sooner than later.
We also saw the Pulmonary doc on Monday who said Rees is the Star of the Pulmonary
Clinic. To our sheer shock, he is taking Rees off of his diuretic and Albuterol breathing
treatments (which we thought he would be on for years). We still can’t believe it. This
week we stopped the diuretic and in two weeks we stop the Albuterol and go down on
his other breathing treatment QVAR.
Rees has also started “pterodactyl screaming.” He uses all of his might to belt out a big
yell. It is quite a sound--and site. He is also starting to have conversations---a big step
forward with his hearing. When we roar, Rees roars back. (Video to come when we
have production time.)
We have had difficulties with our nursing schedule the past couple of weeks with
several days without nurses. Luckily it has coincided with Mom getting more and more
energy and strength. The Gleevec side affects are also gradually getting better. I even
took Rees to a doctors appointment all by myself. Being able to take care of Rees
without a hovering nurse is a liberating feeling of normalcy.
Rees now tips the scales at 19 lbs. 6 oz. and is sitting up for several minutes without
help.
We cant’ describe how proud we are of Rees for working so hard every day. He is
making huge strides in every area and we are completely amazed by how much he
changes on a daily basis. It is absolutely thrilling.
Rees is very lucky to have special honorary Houston grandmas. Grandma Joan sat with
Rees for 4 hours in the car this week while I had to go to an appointment on a nurseless
day. Grandma Suzie brings mom and dad a good meal every week.
January 18 - Oo, Ee, Oo, Ah, Ah
Rees, the listener, is doing an amazing job progressing with his hearing. This week in
speech/hearing therapy Rees demonstrated that he could hear all of the sounds in the
“speech spectrum.” Oo, Ah, Ee, Mm, Ss, Sh are the Ling sounds which are the extreme
sounds in spoken language, so if you hear them, you can hear all of the other sounds.
Rees turns to both sides for all six sounds. (His awesome turning is also connected to
progress with his sitting and oblique strengthening in physical therapy.)
Thursday Rees had his second hearing test in the sound booth with his hearing aids. He
did much better than his first test showing that he is doing a good job “learning to
listen.”
Rees is continuing to work very hard during his physical therapy sessions. He is doing
better at sitting up and is now working on “transitioning” -- from tummy to sitting, from
sitting to standing, standing to sitting, etc.
Rees is also noticing faces more and more. This is evident by the scratches on mom’s
face. The perpetrator seems to be right handed as most of the scratches are on my left
side.
Rees is also starting to smile and laugh more and more. His smiles and laughs are
heavenly.
He is still eating three times a day. After a few bites Rees gets very sleepy and uses his
binki to help him suck down the food. We are still working on finding the best strategy.
Some of the therapists say the more he consumes the better. Others think it doesn’t
matter how much or little he eats as long as he is using good technique. This is a little
frustrating and there really are no right answers.
We have a running countdown until decanulation (the technical term for taking out the
trach) – 42 Days.
January 12 - Trach Removal Countdown: 50 Days
T –50 days until freedom! Rees has a scheduled date to remove the trach: March 3!
That morning we will check into TCH and he will go to the OR to get tubes in his ears
(like many of his cousins, because of fluid build up) and then the doc will scope his
airways all the way down to his lungs to make sure everything looks good. If all goes
according to plan, later in the day his trach will be removed. We should only have to
stay one night for observation.
Yesterday when we went to see the doc, we had a long list of reasons why we should
remove the trach as soon as possible. We’ve always been told probably March or April.
And we campaigned hard for March 1. We barely got to bullet point number three, when
the doc chuckled and stopped us saying let’s look at the calendar. March 3 it is! (March
1 is a Saturday.)
We are bursting with joy! His doctor is very proud of Rees for his remarkable progress
and how far he has come. With this news Mom and Dad feel we have done a good job
keeping Rees on the right track. We are excited have an end in site.
We can’t wait for Rees to have an uninhibited bath when he can splash all he wants.
We can’t wait to plant millions of kisses on his sweet neck that has been covered with
thick ties holding the trach in place for the past 8 months.
We can’t wait to take Rees on outings other than doctor visits, and with significantly
less medical equipment in tow.
We just can’t wait. (But, of course we will---in the past two years we have learned
patient determination, with lots of prayers, is required in our medical battles.)
Before his doctor’s appointment yesterday, Rees was trying to show me he didn’t want
the trach any more either by pulling it out. Nurse mom sprung into action and replaced it
quickly. The more active and strong he becomes the harder his trach is to manage. He
can bust out of his Velcro swaddle blanket now, so for nightly trach care we have to put
Rees to sleep before we attempt to change the ties.
January 8 - Breakfast, Lunch & Dinner
Rees is now eating breakfast, lunch and dinner! We are thrilled out of our minds with
the progress Rees has made with his feeding. We (Rees, mom, dad & therapists) are
working as hard as we can to get Rees to be an eater. Everything has kicked up a notch
and Rees is going with the program.
The new routine includes eating small amounts for breakfast and lunch, and then as
much as he’ll eat at night (1-2 tablespoons---which seems like a lot when you are taking
little bites). We are also starting the brushing therapy again for a few weeks. The
therapist says this will help since Rees has had a growth spurt and we are really
pushing him with the oral activity.
We are so excited as this is a huge step towards graduating from feeding tubes in the
nose and not needing a surgically placed feeding tube in his tummy. We still have a long
ways to go before the feeding tube is gone, but because so many babies like Rees
develop an oral aversion and refuse to eat, his eating is wonderful wonderful news.
Mark and I got Rees girlfriend Sophia a set of the colorful dipping sticks for her birthday
because she is working on eating too. After looking at the package we laughed so
hard. We had been feeding Rees with the colorful textured handle, instead of the short
stubby spoon. Ha! Luckily this goof did not hinder Rees’ progress. Since we started
using the right end, Rees can get to the food much easier.
Rees went to his first party on Saturday. It was Sophia’s first birthday. It was so nice to
go somewhere other than the doctor’s office. Rees got to see his buddy Joaquin also. It
was so good to see our NICU friends for a happy affair and not in the stressful NICU.
Rees is also sitting up so well. Thursday he sat up 34 seconds with his physical
therapist. Over the weekend he was sitting for several minutes—too long to count. He
is getting more and more stable. He is working now on getting to the sitting position by
himself and catching himself before he tumbles over. Rees has done well with is
oblique tape on his tummy, so today tape was added to his back.
My back-ordered birthday present from Rees came yesterday. Yiippee! I finally have a
Mrs. Potts & Chip characters from Beauty and the Beast. I love them. I’ve wanted a
Mrs. Potts ever since I got married and especially after my little tea cup came along.
January 6 - Happy Birthday Amy!
On January 3rd, Mark and Rees joined together to celebrate Amy's birthday. It was
especially special that we were able to celebrate in the comforts of our home with
Rees at our side.
Both Rees and I are blessed to have Amy in our lives. She is the glue that holds the
household together! Happy birthday Amy, we love you!
January 3 - Very Happy New Year
On New Year’s Eve the Potts crew was celebrating the coming of a new year and
wonderful news from our appointment with a pediatric developmental specialist.
We were dreading the appointment because the doctor is known for being harsh and
negative. To our extreme delight, the doctor reported that he was very pleased with
Rees’ progress since he last saw him in the NICU. Luckily Rees stayed awake long
enough to show off most of his tricks. Although Rees is behind developmentally, the
doc felt that it is because Rees has spent all of his energy struggling medically and that
as soon as all of the issues are resolved, Rees will catch up. This is the best report we’
ve had concerning Rees’ development.
Rees is doing better and better sitting up without any help. Today his physical therapist
taped his stomach with special tape that is supposed to help stimulate his ab muscles.
He will wear the “kinesio” tape until Tuesday. If all goes well, the next step is to tape his
back too. Very weird, but we’ve done weirder—we’ll try anything that may give Rees a
boost.
Rees is getting a little impatient with his feeding. When he is tired, his food drools out
his mouth. When he is not sleepy, he doesn’t want to sit still to eat. We’ve asked our
therapists to put feeding on the front burner because we really want to make progress
in this area. With the trach coming out in a few months, we want the feeding tube to
closely follow.
Mom had a great birthday today. Last year Rees had a balloon delivered to me on my
perch at his bedside in the NICU. This year I had balloons in my bed for a birthday
breakfast with Rees.
| LoneStarPotts |
| Yippee! I can see! |
| It is so fun! |
| This singing, dancing snowman is one of my favorite toys. |
| Here I am with my LuLu! |
| Joaquin and I were able to play together at Sophia's birthday party. |
| Dad makes me laugh! |
| Asleep in one my my cute Christmas outfits |
| Christmas Eve Eve with Mom! |
| Drying off after bath time! |
| Sitting up in my bumbo. |
| I gave dad this monkey topiary for Christmas. |
| Thinking about splashing during bath time |
| This toy has lots of birght lights and makes tons of noise. |
| Potts Family Easter |
| I can fly... |
| Hanging out with Nozar at Sophia's birthday party. |
| My First Easter Peep! |
| RSV season ended and I was able to hang out with Jack and Henry! |
| On a break from my nasal gastric feeding tube |
| I went to my cousins' birthday party and munched on my own toes |
| Sophia is my special girl..I'm all thumbs when I am around her. |
| Easter in the park |
| Mom thinks I am handsome in my sweater vest |
| ...and it's fun! |
| The yellow ball does not fit in my mouth but I try to jam it in anyway |
| How precious am I? |
| So precious that Mom can't stand it |
| Christmas morning at HOME! |
| With a little bit of help I can stand up. |
| I did't know that was there |
| First moment with glasses |
| Loving the sea breeze |
| March for Babies - Houston - April 27 - Join the Team The Potts Crew is Marching for Babies to celebrate our tremendous miracles over the last 2 years and to remember our tiny friends who are now in Heaven—especially Lily Grace and Bennett David who we miss very much. We feel very privileged to have been part of their short lives. Please support us in our walk to raise money for the March of Dimes who supports research helping the tiniest babies survive. With the help of the March of Dimes, in the past 10 years, tremendous strides have been made in the meds, devices and techniques to save babies as early as Rees (23 weeks, 4 months early). Rees is joining the Woman’s Hospital team, where the miracles happen every second. Rees’ Team: Woman’s Hospital of Texas www.marchforbabies.org/ReesyPie Amy’s Team: So Lil honoring Lily www.marchforbabies.org/MommyoRees Mark’s Team: Chunky Monkey honoring Bennett www.marchforbabies. org/DaddyoRees March of Dimes mission is to celebrate babies who are born healthy and to raise funds for babies who need help to survive and thrive. If you can, please join us in this worthy cause. You can click on a link above to make a donation. |