June 2007 - Month 8 in the NICU & Going Home
6/30/2007 8 Month Birthday
Good poops today, but Rees is keeping us on our toes. He pulled his feeding tube out
3 inches this morning. Since he is not throwing up (aka he is “tolerating” his feeds),
we have not checked into the hospital for a tube replacement.
Today at Toys R Us was the first time Mark has been recognized in public for his
celebrity status of being Rees’ dad. It was a mom from our neighborhood who heard
about Rees and has been keeping up with him via the web.
6/29/2007 One Year Later
Today is the one year anniversary of my checking into St. Luke’s Hospital to begin
battling CML—in a very nontraditional way in hopes to keep our baby safe. I’m so
grateful to God that I had Mark with me every step of the way.
Before the call from the oncologist, I thought of all kinds of fun ways to surprise my
family with the news that I was pregnant. I still cry when I think of having to tell my
family about the baby and cancer at the same time.
What a contrast June 29 was a year later: Mom in remission and Rees more and
more vibrant every day. Mark is still the top nurse. I’m pretty sure he prefers taking
care of little patients. Rees scared us this afternoon with a runny nose and a runny
diaper, but after several hours, he seems to be “regular” again.
Today Rees made cooing sounds! I couldn’t believe it. We were told Rees wouldn’t
be able to make sounds until he was off the ventilator and his trach was closed. It
was the most precious sounds I’ve ever heard.
6/28/2007 Evening Update
Rees had a nice day. He was probably ready to go on another outing, but Mom, Dad,
Ya Ya and his nurse Miss B were glad to have a stress-free day at home.
Rees had a milestone yesterday that I forgot to mention. He burped. This was his
very first burp. The loud burp was quite surprising since he can’t make many
sounds.
6/27/2007 First Car Trip
Today was our one week anniversary of bringing Rees home. It was a very fast
week! It seems like just a couple of days.
Today Rees went on his first outing in a car. We loaded him up and went to get lab
work at the Woman’s Hospital professional building. The valet guys who took care of
us for the 8 months at the hospital, were surprised to see us pulling in and jumped up
to wave at us.
Mom cut the lab session short. They were having trouble with the stick, so we opted
to do it later at the “big hospital” (Texas Children’s) where they specialize in little
ones. Then we went to the pediatrician’s office. She was very happy with how well
Rees was doing. He is now 13 pounds 1 oz.
Then our road trip took us to Texas Children’s for our third attempt at the lab work.
(The first was Monday when a nurse came to our house, but she didn’t think she
could get it.) TCH was easier to navigate than we expected, but it is an emotional
visit. After being at Woman’s Hospital where Rees was one of the sickest patients in
the intensive care unit, it was hard seeing dozens of kids with severe, lifelong
problems.
Our doc called this evening and Rees now only has one test that came back out of
normal range. This is fabulous news. His direct billirubin that scared us a couple of
months ago for climbing way beyond the normal range is now zero! Yippee! This
means his liver is healing.
We think our first outing went very well. It took four people this trip to carry all of
Rees’ equipment and supplies, so immediately after the trip, we purchased a new
stroller fit for two. The back seat can be loaded with all of Rees’ gear.
6/26/2007 Evening Update
We got too busy last night for an update. Our night nurse cancelled so it was all
hands on deck taking care of Reesy. And then his pulse oximeter monitor went
crazy. This is what lets us know how Rees is doing by monitoring his heart rate and
oxygenation. Mom ended up holding Rees all night, which was absolutely fabulous. I
did pay for it today, but the exhaustion was well worth it.
Today cousins Fi and twins Julian and Aidan came to peek in through the window at
Rees.
Tomorrow is a big day, we first take Rees to get lab work done and then to the
pediatricians office. We have opted to take him in our own car and not an ambulance
since we feel up to the challenge.
6/24/2007 Evening Update
Today Rees went for a walk down the street. Mom was so excited for him to see the
sky, the trees and the grass, but Rees did not open his eyes and slept through the
wonderful experience. Mom and Dad were practicing loading him into his stroller and
into the car with all of his equipment (ventilator, pulse oximeter, feeding pump,
suction machine, oxygen tank and bags of supplies). His first doctor’s appointment
is Wednesday and we needed transport training from our nurse.
Today’s special visitors were Rees’ girlfriend Sophia’s parents. They haven’t seen
Rees for a couple of months, since Sophia graduated to NICU Level 3. He did wake up
to tell them hi and to show off by chewing on his handsandwich.
6/22/2007 Evening Update
Today I got an email from baby.com telling me that today my baby was 4 months old.
Hee hee. This is Rees’ gestational, aka corrected age, we have know him for twice
that long.
Today Rees spent most of the day in the living room instead of his bedroom. He loved
the new scenery. All visitors were banned for Rees’ first 3 days at home, so today
Aunt Carrie, Ya Ya, Pop Pop, cousins Thomas, Camryn and Emily came to visit. He
also had a few friends come and peak at him through the window. Right now only
family and nurses are allowed inside.
6/21/2007 Happy Birthday Cousin Jack
Rees had a very lazy day. He slept most of the day, but did have a little exercise time
on the floor. He even spent a few minutes on his belly, which is a little uncomfortable
for him with the trach, but tummy time is crucial for development.
Mom and dad spent the day fine-tuning our home procedures and protocols, which
will be an ongoing process, and orienting/training new nurses for Rees. As of today
about a dozen nurses have been in and out training and taking care of Rees. Now
that the team is trained, we should be able to get into more of a routine.
6/20/2007 First Day at Home
What a wonderful morning waking up with Rees at home. He is doing great! Today
he started actively kicking his legs. (When he was teeny tiny he would hold up one
leg up in the air and everyone joked that he was waving hello.) We are so excited to
see him start really using his legs as he has more freedom from his bed, which is
now only for sleeping.
This, of course, was a day of many firsts: playing on the floor on just a blanket, sitting
in my swing, hanging out in the living room…..and the first day mom and dad have not
driven back and forth to a hospital in a very long time.
Most of the day was spent orienting several nurses who will be helping take care of
Rees. All have been in awe of how organized, labeled and color-coded Rees’ room
and supplies are.
6/19/2007 Rees is home!
Rees is home!
Rees is home!
Rees is home!
With as much coordination and system checks as a shuttle launch, this morning
Rees was GO for take off. Though the weather was gray, mom and dad were
beaming, rejoicing to God for sending Rees home with us after our eight months in
NICU Level 3.
The only hard thing is saying good bye and thank you to the tremendous and talented
doctors, nurses, RTs and staff at The Woman’s Hospital of Texas. There is no way
we can ever express our love and gratitude to all of the caring individuals who took
care of our precious angel and grew him outside of mom’s womb from the fragile 1 lb
3.7 oz to a sturdy 12.5 lb. (There are some hospitals, even in the Tx Med Center, that
have policies against saving male babies as early in gestational age as Rees.) We
are so blessed to have unknowingly ended up in the best NICU where they fight to
give babies, even the tiniest, a chance at life. We are so excited to introduce Reesy
to his new life outside the gray walls of the hospital.
Last night Mom, dad, Ya Ya and Pop Pop went to eat at Outback Steakhouse. Aunt
Carrie has gone the night before she safely delivered both of her babies, so we
thought this would be a fitting place to dine on the eve of Rees’ arrival at home. When
we returned from our last late night at the NICU, our house was toilet papered. As we
got closer, we saw the huge “Welcome Home” sign for Rees. It was great! (We still
haven’t figured out who pulled this off. Only a very few people knew our NICU ETD.)
“Aunt” Kaitlin and co. kept Rees up late playing on their last night in the NICU. This
morning “aunt” Tiffany and “aunt” Beverly got Rees ready for his big trip and his
“aunt” Nefertari came in today to help send him off. We also said good bye to many
of our neonatologists who have brilliantly lead Rees’ care.
For his big trip home Rees was decked out in a Hawaiian shirt, Bermuda shorts,
fishing hat and sunglasses (he wears them even if not sunny—just like mom). The
NICU was buzzing with excitement as Reesy rolled down the center aisle towards the
door. Camera flashes were flickering as nurses got shots of our star. We tried to
hug every nurse we saw to tell them thank you.
Aunt Carrie and cousins Thomas and Camryn came to celebrate with Ya Ya and Pop
Pop. They caravanned behind the ambulance for Rees’ 3-mile journey home from the
hospital. Waiting for us at home were the respiratory therapist from the equipment
company and three home nurses. Rees will have round-the-clock nursing for the first
month. We are relieved to have extra, trained hands to help and be there in case of
emergency.
Rees is doing great at home! He stayed awake all afternoon looking around at his
new room, satting 100 at every check. He finally fell asleep around 6:30.
We can’t wait for tonight when we don’t have to tell Rees good bye. Although we
know the coming year while Rees is on the ventilator will be a challenge, nothing in
the world is harder than having a baby in the hospital in intensive care.
Please keep Rees in your prayers. With your help his lungs, liver and intestines will
grow healthier every day, and he will get on track developmentally too. And don’t
forget mom and dad, who will need strength transitioning into their new role as
“primary” nurses and therapists.
6/19/2007 Evening Update
Rees is back up to his full volume of formula and so far he is handling the intake and
output very well. Amazingly after days of at least a dozen runny diapers, today Rees
hasn’t pooped, which makes the doctors happy that the antibiotics are working. The
iv is also out.
Rees was still tired today from his busy day yesterday going downstairs on his
fieldtrip to radiology to get his feeding tube replaced. Tonight he slept through mom
and dad’s visit. His aunts Kaitlin and Charlette had him dressed in his baseball cap—
irresistibly cute.
Rees hosted a TPN party for the night shift. But in this case, the P stood for pizza.
6/18/2007 Evening Update
Rees’ pesky NJ feeding tube was replaced today. We will now be flushing it every
few days with a little Sprite to keep it unclogged. With as carefully planned as Rees’
nutrition intake is, it is hard to believe that so far he’s had Sprite and safflour cooking
oil (for calories).
They resumed Rees’ feeds at a lower volume this evening and hope to build back up
to full feeds tomorrow. The IV will be removed at midnight.
6/17/2007 Happy Father's Day
Father’s Day 2006 started with a positive home pregnancy test. We can’t believe it
has been a complete year since our adventure began.
Dad had a great Father’s Day 2007 with Rees in our private room at the hospital. It is
fabulous spending time with Rees without the hustle and bustle of the NICU. Mom
and dad did a good job with all of our tasks, and slept a little bit more than our last
night with Rees.
In the middle of the night Rees’ feeding tube stopped working. In the morning, the
doctor performed a new procedure he had never done or heard of before: he flushed
Rees’ feeding tube with Sprite. It unclogged the tube, but since Rees started
throwing up afterwards, the tube is now only being used for his oral meds. An iv was
started for fluids. We really thought the iv days were over.
Tomorrow they will decide whether to salvage the old NJ tube or replace it. The tube
can only be placed Mon through Fri by the radiologist with fluoroscopy. Mom and dad
are hoping this crazy-minded tube is replaced.
The antibiotics seem to be working. Rees had nice, non-liquid poops today. And even
some wet diapers with no poop. This is a huge improvement.
6/16/2007 Afternoon Update
Rees has been started on a new antibiotic. Although still unclear of the cause of the
diarrhea, this med is the treatment for two of the possibilities.
Mom and dad had fun at the beach yesterday with nephew Thomas and niece
Camryn. We had a wonderful time enjoying the nice weather and playing in the sand
with the kids. We ended up evacuating at 10 pm when Thomas’ tummy hurt—we can’
t chance passing anything to Rees. Luckily Thomas was fine this morning.
We are off to spend the night with Rees at the hospital—our favorite weekend retreat.
Our hearts are broken. Rees’ friend Bennet is now in heaven. Please say a prayer
for him, his mom, dad and twin sister Ellie.
6/15/2007 Afternoon Update
An infectious disease specialist paid Rees a visit this afternoon and all went well.
Mom and Dad are off to Galveston for a quick get a way! On Saturday, the family will
be together because we are rooming in again.
6/14/2007 Happy Anniversary GiGi & Paw Paw
Samples of Rees’ famous poop have been sent out for lab work. The thought now is
that he may have another tummy bug. Because he is doing so well otherwise, they
didn’t suspect him to be sick.
Rees’ head is getting fuzzier every day with more hair. His eyelashes are nice and
long now too. Today Rees had an eyelash on his nose. Mommy taught him how to
make a wish. Guess what we wished for?
The past few days we have constantly been praying for Rees’ friend Bennet and his
family. Bennet has been a tough fighter in his six months in the NICU.
6/13/2007 Evening Update
Rees’ doctors are still very concerned about his loose stools and that he lost weight
the past few days. His GI specialist is coming tomorrow to reassess. After all of the
seemingly impossible challenges Rees has overcome, what is now keeping him in
the hospital is diarrhea.
Yesterday the eye doctor came to check Rees eyes, which they do for a very
extended period after ROP surgery. He got checked every week, then every other
week, then once a month, then every couple of months…..and now his next
appointment is in two years! This is very good news. He also did a type of vision test
and concluded that Rees does not need glasses at this point. Vision is one of the
things at risk with preemies, so we are thrilled with how well Rees is doing.
6/12/2007 Happy Birthday Uncle Dan
Rees passed one of his many tests that he needs to graduate from the NICU today—
the car seat test. His nurse monitors his vitals for 30 minutes to see how he
tolerates sitting in the seat and whether he would need additional oxygen while in the
car. Rees did very well. He was so comfortable he slept in his seat for three hours.
(This doesn’t mean he will be going on any 3-hour road trips any time soon.)
Poop scoop: a little less loose today.
Please say a big prayer for Rees’ buddy Bennet. He is going through a tough time
today.
6/11/2007 Evening Update
Today Rees had lots of special visitors. His Texas great-grandparents came to see
him and his Aunt Petey got to meet Rees for the first time. She took trach cpr training
with Ya Ya and Pop Pop. We need extra, trained hands ready to help with Rees.
Rees’ big task this week is gaining weight and firming up his poop. We continue to be
thankful for any poop coming from his hiney, but we are saying extra prayers for
poop that is not “loose.”
6/10/2007 Evening Update
What a wonderful weekend get-away we had with Rees! He is such a sweet,
precious baby. The only time we put Rees down was to change his diaper and
bedtime. He enjoyed his first night away from the binging alarms and flashing lights
of the NICU. Rees was very patient as mom and dad ironed out the kinks in his
numerous treatments and procedures we did this weekend.—all by ourselves with
no nurses. The nurses and doctors thought mom and dad did a great job.
We are now exhausted. We slept in 2-hour intervals between medications, breathing
treatments and feedings. Well, actually, we had 2-hour opportunities to sleep, but we
got up at least every thirty minutes to check on Rees, who was either snoozing or
playing with his toys.
Our room was in Labor and Delivery unit, where we spent many stressful nights .
Rees got lots of attention from the nurses that sat for hours listening to his heart beat
when he was trying to squirm his way out of mom’s belly. We even had a couple of
special visitors, the families of Rees’ friends Sophia and Malik, who brought us food.
After getting to spend so much time with Rees this weekend, it was one of our
hardest times to kiss him good bye. We have tried to be patient, but we can’t wait
until we can kiss Rees good night in his own bed at home.
6/9/2007 Evening Update from Hospital
Hello from the hospital. Mom and Dad are spending our first full night in the hospital,
since we checked out on November 1 leaving our tiny, sweet angel behind. Tonight
mom, dad and Reesy are spending the night together in our own room. This is the
first time we’ve ever been alone with our baby—the sweetest feeling.
This is mom and dad’s final exam for Rees' care. If we pass, the doctors and nurses
will let us take Rees home. Before that can happen, Rees has to pass several tests
of his own. We hope it won’t be too much longer.
Yes, we brought the laptop to the hospital just to update the website--we didn't want
to alarm anyone without posting.
To see the latest video click here.
6/8/2007 Evening Update
Rees is back on his formula after 24 hours on pedialyte. His tummy seems to be
doing a little better.
Rees now has over 20,000 hits on his website. We consider each hit a prayer and
are overwhelmed at the mountains of prayers helping Rees grow and thrive. Today I
measured his foot against my finger. It was about the same length. When Rees was
born his leg was the length of my finger, but even skinnier. What a miracle he is.
6/7/2007 Evening Update
Rees’ runny diapers were the big mystery today. The doctors weren’t sure if it was
from morphine withdrawals or a virus. This morning his formula was switched to
pedialyte. This evening Rees’ diapers were greatly improved, so the thought is that
he has a tummy bug. Hopefully once he is over this bug, he will get right back on with
his feeds and start packing on the ounces.
6/6/2007 Evening Update
Dad figured out why Rees keeps having “blow out” diapers. The hospital doesn’t
stock his size, so he has been wearing and leaking out of diapers for babies twice his
weight. (Well, they do fit better than the tiny diapers that swallowed him when he
was first born.) Hopefully Rees’ new snug-fitting, store-bought diapers will cut down
on the number of loads of laundry we bring home a day.
When we weighed Rees tonight, he lost weight. We will have to see what the doctor
says in the morning.
6/5/2007 Evening Update
Mom and Dad had part two of ventilator training. Then we found out there was a part
three. After that Rees doctor has warned us that there would be several ad hoc tests
of scenarios to troubleshoot.
Rees graduated from four to five mls of cereal and apple sauce today. He would have
preferred to keep going, but we have learned over the months to take things very
slowly with his digestive system.
6/4/2007 Evening Update
Rees’ Monday lab work came back with more progress for his liver. His direct
bilirubin levels have dropped again. We were confident this would be the result,
since the whites of Rees’ eyes are now white again—a beautiful site. His coloring is
much better too. He no longer looks like a coppertone baby.
Since Rees hasn’t gained as much weight as the doctors would like in the past few
days, they are reevaluating whether he needs to go back on some of the caloric
additives, which were stopped last week. Mom and Dad think it may be due to Rees
burning so many more calories with his increased activity. During his occupational
therapy sessions he is doing better and better with how well he can hold his head up.
He seems to be getting more and more comfortable in different positions.
Today Mom and Dad started part one of a two-part ventilator training. We have to
learn every part of the network of tubing and circuits, so we will be ready to
troubleshoot if Rees pulls everything apart.
Rees pooped on Mom twice today. Luckily the hospital gown bore the brunt of the
explosive diapers. Mom also got good blood work back today. After two weeks on
Procrit my hemoglobin has returned to normal range, meaning I am officially not
anemic. I can graduate now to Procrit shots every other week, instead of every week
like originally planned. I am still quite fatigued, which can be from the chemo pill and
NICU stress.
6/3/2007 Evening Update
We are putting the finishing touches on Rees’ room, which is a light sage green with
Noah’s ark animals. Things checked off the list: Rees’ bed, changing table, glider
with ottoman, day bed for mom’s naps……and a supply cart and supply shelves.
Rees has supply bins that will be filled with his special trach and feeding supplies
that are color-coded and organized, so we can quickly find everything Rees needs.
Thanks to Rees’ cousins Thomas, Camryn, Anna and Ben, we had most of the big
baby furniture and gear we needed. It seems the only thing missing is the baby!
Rees’ doctor gave Rees a very good report card for the past week. He is doing well
with his trach and portable ventilator. Sunday night and Monday morning are the big
testing times, when weekly lab work is done. On Mondays are when lots of time is
spent analyzing the lab work and making adjustments to medications and nutrition.
6/2/2007 Evening Update
Dad got to feed Rees for the first time today. We had a pic nic on the floor. Mom held
Reesy while Dad feed him. Every day he eats more and more. Rees’ therapeutic
feedings are therapeutic for his parents also.
Rees’ portable feeding pump arrived today. We have now started training on how to
mix his special formula and use the pump.
6/1/2007 Evening Update
Mom feed Rees his gourmet mixture of applesauce and cereal for the first time
today. Now that I am trained in feeding, we can feed him a little bit everyday. He loved
sticking his hands in his mouth and squishing the food. The amount he is getting is
not much, but it will help him stay interested in food until his GI system is ready for
more food.
Tonight Ya Ya and Pop Pop gave Rees a bath in the big boy bath tub. They got an A+
by the nurses.
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