March 1 - March 31
3/31/2007 Happy 1st Birthday Cousin Camryn
(New Video)
Dad produced a new movie of Reesy this afternoon. To view the latest Rees
production click here. (We are having technical difficulties with posting new pics. If
you don't see them yet, we're still working in them.)
Today Rees’ morphine was “DCed," hospital talk for discontinued. We are very
excited to reduce his number of meds. Today Rees went to higher calorie formula for
all of his feeds today and did well. He will be weighed tomorrow night and his doctors
are anxious to see if he has gained weight without the TPN iv nutrition.
3/30/2007 Rees' 5 month birthday
We are rejoicing for the wonderful week we have had. Rees is doing so well. All of a
sudden he is a grown-up baby. Mom is still getting used to Rees not being incredibly
fragile. Dad has adjusted quite nicely—I’m afraid he is already tossing Rees in the air
when I’m not there. (Just kidding.)
Today Rees got a higher calorie formula every other feeding. So far he is doing very
well and has not had any issues. We are hoping that next week the Easter bunny
comes and yanks out his central line.
His Aunt Nefertari got him a preppy polo outfit. He looked so grown up in his collared
shirt.
3/29/2007 Evening Update
We are scared we may wake up from a wonderful dream. The progress Rees is
making is tremendous.
Rees is doing well with his personal trainer. The stiffness in his arms and neck are
already improving. Yesterday his therapist said to bring Rees’ toys. Today he played
with his silver rattle. The therapist was impressed with how well he held it, but mom
and his nurse laughed. The rattle is the same diameter of his et tube the he was
notorious for grabbing with great force. She also hung a toy over his head. She said
he would start noticing it and gradually try to reach it and then grab it. By the end of
the day he was holding on. His nurses’ favorite thing Rees is learning in his sessions
is to hold his binki in his mouth by himself. He is getting the hang of it, but greatly
prefers to have someone else do it.
Today one of the other moms in our pod said it was so great to be roommates with
Rees because when you need a nurse there are always plenty handy, since they are
lined up to hold Reesy.
3/28/2007 Happy Birthday Pop Pop - Off TPN!
Wonderful news! Rees is off TPN! This is his first day to be off the iv nutrition, which
has helped him grow to a big boy, but making his liver sick. More great news…Rees’
lab work was beautiful today. He has made improvements across the board. His
nutrition labs that had shown elevated levels are down and he had a beautiful blood
gas, which showed he is oxygenating better now than when he was on the ventilator.
Mom cheered as his TPN was thrown away, but not too loud, because it was finally
my turn to hold Rees. Nurses lined-up all day for their turn to hold him, some snuck in
two turns—well just Aunt Paula. His nurses have waited so long for the canula so
they could snuggle with Reesy in the rocking chair. His dance card is full the rest of
the week.
Now that Rees is up to a good amount of volume of formula, he will need to work on
digesting higher calorie formula, and then fortified formula to help his dense bones. If
all goes according to the current plan, he may get his central line out at the end of
next week. Since no one trusts Rees, they need to leave in the line to make sure he
can tolerate his food before they remove the central line. We don’t want to risk
needing another one.
Rees also had a hearing test today. Preemies, of course, are at a high risk for hearing
damage. We haven’t been worried about Rees since he is very responsive to voices,
sounds and his music. However, preemies that have been on the ventilator for
extended periods tend to have fluid build-up in the ears that can affect hearing, but is
treatable. Rees was so cute making faces and looking around to find the new
sounds. He got a 3 of 5 on one ear and 4 of 5 on the other, which is ok. They’ll check
him again before he goes home. If he doesn’t get 5 of 5 on both ears, he’ll see an ENT
to get the fluid suctioned out.
3/27/2007 Evening Update
Today is Rees is 150 days old. He had a great day: no spit ups and breathing well. He
is wide-eyed and has quickly figured out that if he cries someone will pick him up and
cuddle with him. We’re so lucky Rees has lots of sweet nurses to love on him when
mom and dad can’t be there.
3/26/2007 Evening Update
Rees is still breathing well. He got lots of cheers today. Everyone is so proud of him.
A few things make it tough for Reesy to breath: his distended belly pushing up on his
abdomen and his irritated trachea, but so far he is doing very well.
Now that the movement restricting breathing tube is gone, Rees had his first daily
session today with his personal trainer (aka occupational therapist). He had a very
good assessment: full range of motion in his arms and legs, but a little stiff in his
arms and neck. Just like mommies who have been on bed rest, little guys need
physical therapy to get their muscles and joints working. After he is more
comfortable breathing the therapist will gradually incorporate developmental tasks
like balance and coordination.
Today was the first day in quite some time that Rees didn’t have any spit-ups. The
breathing tube may have been contributing by triggering his gag reflex. We are in a
bigger race than before to get Rees on full feeds. A few days ago one of the two
ports on his central line clotted off and the nurses weren’t able to unclog it.
Yesterday the last remaining port clotted off. Luckily, the nurses were able to unclog
it. It is inevitable that the central line will eventually clot off permanently or get
infected, so they are continuing to increase his feeds “as fast as they can and as
slow as they have to” so that with in a week or two he will no longer need the central
line for his iv nutrition.
We thought that Rees would be the happiest baby in the land after his breathing tube
was removed, but he has been very fussy. Maybe he quickly learned that someone
can pick him up if he cries. Yes, he is crying. It had been so long since we’ve heard
his voice. His throat is still soar, so he sounds like a little duck. His roommates,
especially Sophia, are in no hurry for his voice to get to full strength.
3/25/2007 Rees is breathing on his own!
TEARS OF JOY
TEARS OF JOY
TEARS OF JOY
TEARS OF JOY
TEARS OF JOY
Rees is breathing all by himself. Mark and I are so excited, relieved, proud, amazed
and thankful. At 8 p.m. Rees’ breathing tube was pulled out and he went to nasal
canula. Within minutes his oxygen saturation was 100. There was a crowd of
spectators in his pod cheering him on. Everyone was so happy and proud of Reesy.
This is a major adjustment for our little angel, so we are still praying continuously that
God will keep his lungs strong and that this was his last time on the ventilator.
After the crowd thinned, Dad got to pick Rees up out of bed and stand and hold him—
a simple, normal thing dads do, but most don’t have to wait 5 months. Rees looked at
his daddy in awe, freely moving his strong neck and head to see everything around
him, but mostly gazing up at his daddy.
When babies are on ventilators, holding can be very stressful, since a slight
movement by baby or parent can cause trauma. In the past it took two nurses to
assist us to hold Rees and now we can pick him up when ever we want, all by
ourselves.
We feel just like we did after Rees’ first major exploratory surgery on his belly when
we knew he was going to live. We can’t stop crying tears of joy. A huge milestone on
our long adventure.
3/24/2007 Evening Update
Tomorrow may be the big day! If Rees does well on his 24-hours of et-cpap (aka
breathing through a straw), the plan is to pull out his breathing tube (the straw) and
take him off of the ventilator. He will skip cpap and go strait to nasal canula, which
will give him a higher concentration of oxygen than room air, but no mechanical
support. His doctors have been very, very patient weaning him off of the ventilator
and they feel (with some trepidation) that he is ready to make the next step.
Grandpa Potts finally got his hands on the Reeser today. Rees loved being held by his
Paw Paw. Mom and Rees had a great afternoon. Rees stayed awake for two hours—
even while I held him. What fun! Rees usually falls asleep immediately when mom
and dad hold him. He gets super calm and comfy.
If you are at home on Sunday evening, flip on CSPAN2. Mom will be on at 6 p.m. on a
BookTV episode filmed at her museum.
3/23/2007 Evening Update
Once again, the date of Rees' extubation has been pushed back. For weeks we were
under the impression that today (Friday) would be the day that the neo's would pull
the tube out. Much to our chagrin, they decided to wait and see if Rees' spit
ups/reflux will settle down which would decrease the aspiration risk.
Mom and Dad realize that they are getting a little impatient and a day or two longer
won't hurt. After all, nurse Amy told Dad that Rees is 142 days old!.
Today, Rees had a change in his regular schedule. Dad held him during the day so
Mom could take the night shift.
3/22/2007 Evening Update
Rees continues to make progress toward bidding the ventilator goodbye! Today the
doctors turned his settings down some more and we hope they extubate him this
weekend. If the doctors do not, we suspect Rees will take the initiative and do it
himself!
Only one spit up that necessitated a break in feeds today.
Mom held this afternoon and Dad held this evening. He loved it!
All neighbors are doing well.
Paw Paw (Indiana grandfather) comes in for an unexpected visit on Friday.
3/21/2007 Evening Update
He had his first good back rub—and loved it. Because he was getting too hot in his
sling, his nurse stripped him down and carefully sat him up without moving his
breathing tube out of place. Then she gave him a good back rub with lotion. Rees
was in awe---he has never sat up like that (except for his spinal taps). He made such
cute faces that “Aunt” Rommanee called all of the other nurses over to see. Dad got
give it a try this evening. Mom is very jealous that she didn’t get to be part of the fun
today, but hopefully will get a chance tomorrow.
Dad also went shopping for new “cool” outfits for Rees. Rees is getting too hot in the
cute outfits Dad bought before because the thick material of the sling does not breath.
So far Rees has had only one spit up and feeding break. He also went down a little bit
more on his ventilator. There is only one more tweak to go before the breathing tube
comes out.
Tonight we are very relieved. Rees’ buddy Bennet had major exploratory surgery
today on his belly—just like what Rees had. The amazing surgeons found and fixed
the problems. It was much less severe than what was expected, so we are all
celebrating.
3/20/2007 Evening Update
When I called to check on Rees this morning at about 5:30 a.m., he had just pulled out
his breathing tube. They could have left out the tube and see how he did, but they
opted to put it back and continue with the master plan of a planned extubation at the
end of the week. He did so well that they didn’t even have to “bag” him (manually give
him breaths with the hand pump) and his oxygen saturations stayed very high.
Rees had a busy schedule today:
1) echocardiogram to check his heart which is done for babies on the ventilator for
extended periods - all looked good
2) ultrasound of his kidneys to check for abnormalities, since babies on iv nutrition
and lasix for long periods can develop kidney stones – all looked good
3) EKG to verify that he has no seizures, which is sometimes a problem with
preemies – results not back, but doctors are not concerned for Rees
A pediatric GI specialist came to see Rees tonight. We were very anxious for her to
meet Rees since his feeding problems have become an issue. She will also see
Rees after he goes home and will work with his pediatricians to come up with the
best feeding plan for him for the first few years. After an hour of reading through his
charts, she gave us a very good report. She thinks that most of Rees’ current
problems with spitting up and not going up quickly on his formula amounts is due to
slow bowel motility, and not the standard run of the mill reflux. This can be due to
several factors: being a preemie, being on pain meds for extended periods, going for
long periods of time without food, and enduring multiple gut surgeries. Luckily this is
a problem that just takes time to overcome. They will continue to go up on his feeds
“as fast as they can, and as slow as they have to,” since the main goal is to get him
off of the iv nutrition to help his liver and reduce the risk of infection.
Mark and I went to funeral this morning for The Amazing Lily Grace. I can’t express
how heartbreaking it was to see her parents, whom we consider our family, going
though something that all NICU parents fear. Mark and I feel an unexplainable sense
of honor to be part of the very small group of people who knew Lily, since family and
friends cannot visit in the NICU. We know that heaven’s newest angel Lily Grace will
be watching over all of our babies, especially her identical twin sister Sophia.
3/19/2007 Evening Update
Rees made great progress with his ventilator today. For those familiar with the
settings, he is now on: peep/cpap of 5, pressure support of 4, & 21% oxygern (room
air) most of the day. Because he is doing so well, the doctors don’t think that the
formula that was suctioned out of his breathing tube actually made it into his lungs.
What a relief.
Today was another yo yo day with Rees’ feedings. Last night they took x-rays of
Rees’ belly and it didn’t look so good. The doctors were nervous that he may have an
infection. The x-rays of his belly looked better this morning, so they gave Rees
formula, but he threw up right away, so they stopped his food right away. After a long
break, they started his feedings again early this evening. So far no spit ups—even
while mom was holding him. Yippee. Hopefully the reflux meds have started to kick
in. We are praying the reflux can be controlled with medications, if not, it could mean
another trip to the OR.
Tonight Rees is hanging out—literally hanging out. He has a new contraption in his
bed. They placed a large wedge under his mattress. A “sling” keeps Rees at a nice
angle so gravity can help keep down his formula. He is velcroed in place. Dad told
Rees he is sleeping just like an astronaut. We thought he would be uncomfortable
and try to wiggle out, but he immediately fell asleep. Apparently sleeping with your
head up and legs down, is much more comfortable than sleeping with your head
down and your legs up like mom did in the hospital.
3/18/2007 Evening Update
Rees had a tough time with spit ups today. This evening he spit up and some went
down his breathing tube (aspirated). This is very very dangerous. If the formula
made it down to his lungs, it could lead to infections. Luckily his nurse was at his
bedside when it happened so that she could respond immediately and suction his et
tube. So far he has not shown any signs of infections, but we won’t know for certain
until it has been at least 24 hours.
His intestines looked a little abnormal on x-ray, so they have stopped his food for
now. After spitting up again after they stopped his feeds, Rees’ tummy was
suctioned to get all remaining contents out to avoid another spit up. Hopefully he just
needs a little break and can start eating again tomorrow.
We are praying hard that this is not cause another kink in the road. We would like to
get off the NICU scenic route and take the expressway home.
3/17/2007 Happy St. Patrick's Day
After spending Halloween, Thanksgiving, Christmas, New Years, Valentines and St.
Patrick’s Day in the NICU, we hope we only have one more left: Easter. Although they
are probably very nice, we really don’t want to see what kind of decorations they have
for the 4th of July.
Apparently Rees does not like wearing green. He spit up on his St. Patrick’s outfit
this morning. Mom washed and brought it back. Then this evening when he had it on
again, he spit up on it again. This morning they adjusted his feeding tube to go further
into his intestines to better help prevent spit ups, aka “reflux” in the NICU. Other than
those two episodes Rees had a very nice day.
We’ve had a heartbreaking day today. Rees’ friend The Amazing Lily Grace was
taken to heaven last night. We feel so helpless knowing that there is nothing we can
do to ease her family’s pain. Meeting Lily, her parents and twin sister Sophia, who
has made tremendous progress in the last two weeks (full feeds and cpap), is one of
the many blessings we’ve had on our tough journey the past few months.
3/16/2007 Evening Update
Rees has a new type of feeding tube. Instead of going into his stomach (OG tube),
this tube goes through his stomach and straight into the beginning of his intestines
called the duodenum (OD tube). The switch in feeding tubes is so that his reflux does
not interfere with getting up to full feeds and getting off of the iv nutrition. Finding the
right combination of reflux meds could waste valuable time. An OD tube also greatly
reduces the chance of Rees aspirating his formula if he spits up, which can lead to
pneumonia. His two tubes make him hard to cough up formula if it goes down the
wrong way.
Today Ya Ya got to change one of Reesy’s diapers before she went back to Waco.
Rees enjoyed his visit with his grandparents, and they loved visiting with him now that
he is more awake and alert. His new interest is his mirror. He looks at his reflection,
but we don’t think he has figured out the identity of the other baby.
Tonight his nurse Kaitlin had Rees ready to go for St. Patrick’s day in a cute green
outfit that says Mom’s lucky charm. (What an understatement.)
Mom update: I had a blood test yesterday. My blood worked looked very good. I am a
little anemic, which is the reason that I’ve been very very tired for the past two
weeks. Contributing to the exhaustion is my body still adjusting to the chemo med
Gleevec and stress, of course.
3/15/2007 Happy 1st Birthday Julian & Aidan (my
twin cousins)
Rees went down a little bit more on his ventilator settings today and is doing great—
although he has made several attempts to pull out his tube by himself. The double
layer of mittens has not worked well as a deterrent. His amount of food has
increased everyday this week. He is now halfway to full feeds. The labs from his
diaper sample came back, which indicated that he was digesting proteins well. We
are so thrilled to have such a great week.
Please say an extra prayer for Rees’ friend Lily Grace. She is sick and having a tough
time.
3/14/2007 Evening Update
Rees got great reports from his lowered ventilator settings. It looks like he is headed
in the right direction.
In the middle of the night Rees had a wonderfully normal poop. The doctor and
nurses were so excited that after everyone took a look in celebration, the diaper
accidentally got thrown away. It was supposed to go to the lab for a few tests. He
had another great diaper this evening, but I’m sure the guys in the lab won’t be as
excited to see Rees’ poop.
The nurses were busy giving babies platelets throughout the NICU tonight since Mark’
s batch was about to expire. It was fun to eavesdrop on the nurses while they were
reading out the blood specifications to verify donor/recipient before administering the
blood. The last thing read allowed was “direct donor for Rees Potts.” They then
thanked Rees for already learning to share.
3/13/2007 Evening Update
Yes, Rees is a rascal. He pulled his breathing tube out last night. They immediately
re-entubated him. Luckily this didn’t interrupt the breathing plan. He is still on the
ventilator, but today they turned off the regular settings. Rees is now taking all of his
breaths on his own. The ventilator is now only giving him “pressure support,” which
means the vent gives him a little bit of a boost with each breath he takes on his own.
The plan is to take about a week to slowly wean the pressure down until he is totally
breathing on his own through the et tube.
Today we had a big celebration in the NICU. Rees’ friend Evelyn went home. She is
one month older than Rees and has also had a tough time, so we are so excited for
her family. Her parents are extremely devoted and we are praying for them as they
transition from NICU to home.
3/12/2007 Evening Update
I explained to the doctor today about our blood bank frustrations last week and told
her to let us know if Rees doesn’t need platelets because the batch that Mark gave
on Friday expires in 5 days. The last batch was thrown away, so we want to release
the batch so they don’t go to waste. The doctor was in dismay that platelets were
being thrown away because they are frequently in shortage. She immediately called
the blood bank and found out that there is enough of Mark’s platelets for Rees and 9
of his friends to have platelets tomorrow. Hosting a NICU platelet feast makes us feel
so good.
In the middle of the night last night, we were awaken by a terrible storm. I shot up
and immediately called to check on Rees. Oh no! Rees is by the window. Who knew
his new prime window seat would keep me up worrying all night. Dad checked the
weather—no tornado watches—but mom didn’t go to sleep until the storm passed.
Rees had another nice day today. His swelling is almost completely gone. He can
open his eyes so wide now to look around. Rees is starting to play all of those clever
baby tricks. As soon as mommy tells him good bye when he is sleeping, he either
opens his eyes big knowing that peering into those beautiful eyes is too irresistible to
miss, or he starts getting fussy knowing I’ll come right back. One of his mittens fell
off this afternoon and within minutes he had started pulling the tape off of his face—
Reesy is quite a rascal.
3/11/2007 Evening Update
Rees had a nice day today—mostly snoozing. He barely opened his eyes to see his
Aunt Carrie who hadn’t been able to see him since Christmas, and Ya Ya, Texas
grandma.
The poop report: much better. I’ll spare the color commentary.
3/10/2007 Evening Update
Because Rees got a big boy bed yesterday, dad got him a new fancy mobile today.
Rees loves watching it. He is so much more alert now. We love watching him look
around and make faces.
The doctors significantly decreased the amount of his food today since he is still
having a significant amount of blood in his stool. It looks like he was past the
threshold of food tolerance from his intestines. The doctors said to expect him to
take a very long time to be able to absorb his formula since he went so long without
using his gut. Since they did not have to remove very much of his bowel, he should
have enough to one day have normal function—it will just take time.
3/9/2007 Uncle Michael (O-) meets Rees
Today we spent most of the day in contact with the blood bank. I can’t express my
frustrations in words. We are so grateful for their services, but completely
disappointed in how hard it has been to set up the direct donations. This morning
Mark had a platelet appointment and Uncle Michael from Waco and had a double red
blood cell appointment.
When Mark arrived at his appointment, he casually mentioned Rees’ uncle was
coming later. The lady said double red blood cell donations for direct donations are
not allowed. After lots of phone calls, they would not budge. Uncle Michael could only
give a single unit of red blood cells. Then on my way to see Rees, the blood bank
called back. They said Michael could not give blood to Rees because his blood type
was not on the orders. Michael is O-, any one in the world can receive his blood type.
The hospital was bewildered—this was not noted in any of the forms they faxed over.
The hospital blood rep called the blood bank and straighten things out—we thought.
A few minutes later Mark got to the hospital to see Rees and said the hospital called
in the middle of his donation and said Rees couldn’t receive his platelets. What!?
After more phone calls, this was straightened out. When Michael got to the blood
bank, he donated a unit of whole blood which they will take out red blood cells for
Rees—much less red blood cells than we had hoped. They said Michael could not
come back to donate until May, but then we could get a note from Rees’ doctor to say
that it is medically necessary for Rees to receive his O- blood and then he could do a
double red blood cell donate. Utter frustration. Hopefully Rees will not still be in the
need for blood in May.
Eventually, this confusing and frustrating day ended on a good note. Uncle Michael
got to see his precious nephew for the first time.
Rees also graduated to a crib today, since he no longer needs the warmers. What a
big boy in his big boy bed.
3/8/2007 Evening Update
Today Rees had a little more blood in his diaper, so they tweaked his formula. There
is one other back-up formula if this doesn’t do the trick. Other than that, today was a
very good day.
Rees is smiling more and more…and the smiles are becoming more recognizable,
even with all of the tubes and tape in and around his mouth. A very sweet sight.
3/7/2007 Evening Update
Rees had a really good day today. It looks like switching his formula did the trick. He
is more calm because he has less gas, and no more blood in his diaper. His poop is a
gray color, which is an indicator that his bilirubin is very high.
We are not saying it out loud and we are trying not to get excited, but the doctor
expects Rees to be up to full feeds and off of the iv nutrition (TPN) by next week. This
would mean that he would no longer need his central line, which is a constant
infection danger, and that his liver will no longer be damaged by the TPN. We are
praying that there are no bumps in the road. Rees is so tough and has had to work so
hard to get to this point.
Today Rees has a big scab on his face. Yesterday he ripped all off his cheek pad off.
Our tough little angel looks very rugged with his battle wounds. (The cheek pad is a
silicone-like piece that protects his face from the frequent re-taping of his et &
feeding tubes.)
3/6/2007 Evening Update
Early this morning Rees started having large amounts of blood in his stool. Of course
this really scared mom and dad. The doctor thinks it is probably because his current
formula is irritating his system. He has switched from a formula with more corn to a
formula with more rice. Hopefully this does the trick and there is not an underlying
problem. Late tonight he had his first diaper clear of blood.
Tonight mom went to work for a lecture. The author of the new book “Too Far From
Home” told the stories of the astronauts stranded on the Intl Space Station when the
shuttle exploded in 2003. Chris Jones signed a book to Rees: “Who knows where
you might go.” We hope in the near future it will be a 3-mile drive to our house. Years
from now, we know Rees is destined for a very special future. (The lecture was
filmed for CSPAN Book TV—I’ll let you know the date of my cable t.v. debut.)
One other NASA-related note: Many of the technologies developed for the space
program are now working overtime in the NICU. The red glowing light that you can
see in some of Rees’ pictures on his hands or feet measures the oxygenation of his
blood. This was designed for the Apollo missions and is now used on most hospital
patients.
3/5/2007 Evening Update
Rees had a very good day today. He went up to 50 ccs of food. After spiting up part of
his first feed, he did well digesting the rest of the day, complete with lots of giant
poopy diapers. Dad says it is changing “from cute to poop.” But we still cheer and
say a prayer of thanks that his intestines are working so well after all of the serious
problems. His doctors are also amazed that he is handling so much food so quickly.
Rees had quite a temper today, which is probably from gas. The only time he was
sound asleep was when mom held him this afternoon—heaven for both of us.
Clarification on blood donations…if you are interested in donating blood for Rees, it
must be done at one of the Gulf Coast Regional Blood Centers in Houston, not at an
offsite blood drive. Double Red Blood Cell donations take about 1 hour, Platelet
donations take about 2 hours per session. Whole blood is a quick 15 minutes.
3/4/2007 Blood Buddies Needed
Rees is not receiving the amount of blood his doctors would prefer because we do
not have blood in the blood bank designated just for him. He gets blood when it gets
into a more critical range, but today his doctor asked if we could find him blood. No
one in our family that lives in Houston has the right blood type to donate red blood
cells or whole blood. Mark and I would be so grateful to all those who can help out.
Just about any blood type can help Rees. B- and O- are the most crucial because
they can donate red blood cells, since Mark is able to donate platelets. Here is Rees’
wish list.
B- (red blood cells, whole blood)
O- (red blood cells, whole blood)
A+ (platelets only)
B+ (platelets only)
AB+ (platelets only)
AB- (platelets only)
A- (platelets only)
O+ (none)
A “Double Red Blood Cell” donation could help Rees the most. Both platelets and red
blood cells are donated through Apheresis—the same procedure that I did while
pregnant to remove my extra white blood cells. Apheresis donations take about 2
hours. If you need a speedier donation method, donating whole blood only takes
about 15 minutes. If you donate whole blood, your red blood cells and platelets will be
taken out for Rees and the rest of the components will be used to save another life.
If you can donate, please make an appointment with Gulf Coast Regional Blood Center
and let them know you want to schedule a “direct donation” for Rees Potts in Woman’
s Hospital. If you don’t live in Houston, you may be able to schedule a donation
through your local blood center if they routinely send blood to Houston. It is important
to let them know ahead of time that the blood is for Rees, because there is an
additional test for CMV that needs to be performed for all donations to babies.
Gulf Coast Regional Blood Center locations & phone:
http://www.giveblood.org/where_donate.htm
Rees had a great start to the week. They increased his feeds today and is now on
half of the iv nutrition he started with. He has a new normal baby problem: gas. You
can now hear little firecrackers popping in his diaper and he get upset when he
needs to burp. Because he has the feeding tube and breathing tube down his throat,
his nurse burps him by opening the feeding tube for air to escape. Today he is off all
of the hard-core antibiotics and antifungal meds. He is now on amoxicillan—wow! a
recognizable antibiotic that babies routinely take—as follow-up for his urinary tract
infection a couple of weeks ago. We are praying hard that Rees will be able to keep
the bugs away.
3/3/2007 Evening Update
Rees had another positive day. Good output (poops) and good input (formula feeds
without spit ups or residuals).
Rees also had the best dressed parents in the NICU. The annual Houston Museum of
Natural Science Gala was this evening and mom and dad joined in the fun. We paid
visits to Rees before and after the event dressed in full formal wear. Dad wore his tux
and mom wore a pretty flowered dress.
Visiting old friends was lots of fun! Dad enjoyed seeing mom back to her old self -
visiting and carrying on with her colleagues.
We had lots of questions about Rees and some folks asked how we manage to hold
everything together. We honestly do not know but suspect Rees' crack team of
doctors and nurses have a lot to do with it. In addition, we have lots of support from
our family and friends - especially our NICU friends that celebrate the good days and
support us on the tough ones.
Mom held Rees today and dad's turn is on Sunday. A challenging issue with holding
Rees involves timing it just right. Too soon after a feeding could cause a reflux
episode but at the same time we need to hold before the next feeding. The window is
about an hour so we savor every precious minute of it.
3/2/2007 Evening Update
Rees’ swelling dramatically reduced today. His doctor has been carefully monitoring
all of his fluid intakes and tweaking the concentrations in order to help with the
edema and it really shows. Today we could finally see his sweet expressions in his
face that we have missed for the past 3 weeks since his surgery. He raises his
eyebrows, wrinkles his brow and can open his eyes wide.
Today the official radiology report came back and confirmed that Rees does have
rickets (dense bones). They put a sign on his bed that says “gentle handling” to warn
everyone who works with him to be extra careful. This is a problem that can be
corrected as soon as he is off the iv nutrition.
His doctor increased his feeds today, but he also started having more problems with
food tolerance, meaning that he is spitting up more and more. To help, he is on
additional zantac and the pump is now giving him food a little slower. Reflux is a very
common problem with preemies and there are many tricks left to help if the problem
worsens, but hopefully we won’t have to learn them all.
This morning Rees had a what I called a huge poop. I won’t go into the detailed
description, but Reesy proved me wrong this evening. He had an enormous poop
filling his whole diaper. Yes, everyone cheered.
Tonight Mom gave Rees a bath. Then, Dad got to hold him! It has been 3 weeks since
we’ve held him.
Tonight we got scared when we walked in Rees’ pod. There were screens around
Sophia (Rees’ girlfriend who was born very tiny—half of Rees’ birth weight). We
thought she might be in the middle of a procedure, but when we looked around the
screen, we saw her dad in a rocking chair holding his precious baby for the first
time.
3/1/2007 Rees & the Paparazzi
Rees is handling being a media darling very well. He has not let his recent fame go to
his head. When you talk to the press you are always worried what will actually be
printed, we are so thankful and excited that the piece was so well done—and that all
of our family and friends got a better look at our little angel. They are sending us a
copy of the slideshow on cd, so we’ll have it long after it is gone from cyberspace.
Because of lab indicators, they were concerned that the rickets in his bones had
gotten worse. But, the repeat x-ray showed no changes since the original about a
month ago. He is down to 1 antibiotic and 1 antifungal medicine. He is now back in
clothes, but since they couldn’t squeeze him into any of his preemie clothes, he had
to wear a hospital-issue stretchy white t-shirt. He will be in his giant baby clothes
tomorrow. All of the teeny tiny clothes came home. Rees is quite picky with his
wardrobe—he’s not allowed to wear zippers, it is hard if the tops go over his head—
snaps all of the way down are best.
When Dad tucked Rees in tonight, he spit up a little. We are praying that this does not
turn into a feeding problem. (Spitting up is not good if you are entubated.) Rees
desperately needs his food and to get off of his iv nutrition, so his liver can heal. His
bilirubin is so high right now that his tiny tears are tinted yellow.
Please pray for Rees’ friend Edo and her family. Her twin brother passed away
today.
2/28/2007 Rees - Hot off the Press
Our little angel is featured in the March 1 Houston Chronicle in a story about
premature babies. They interviewed Rees on Feb. 22 (his due date). View the article
online—there is a sweet slideshow of Rees and mom. Watch it once all the way
through to hear the audio, then you can click the numbers on the bottom to look at
each picture one by one. When you read the article say a prayer of thanks that Rees’
brain is healthy—he had a 95% chance of having brain bleeds, we are blessed not to
have that major problem.
Article: http://www.chron.com/disp/story.mpl/front/4591636.html
Slideshow: http://www.chron.com/content/chronicle/special/07/babies/
Rees had a very good day on Wednesday. He looks great too. He is growing at a
tremendous rate. At 3 a.m. he weighed in at 8 lb. 15 oz! We expected him to stay the
same for a while since his swelling is still going down, but he is growing like little Pee
Wee (grandma’s favorite Golden Book story).
Mom and dad had a good day too—we closed on our condo—one less thing to worry
about. Our goal was to give a good deal to someone in the medical profession and
we did. A nice family bought the condo for their daughter who is starting med
school. Her mom was a nurse at MD Andersen for many years. Her sister is also in
med school.
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