January 2007 - Month 3 in the NICU
1/31/2007 Evening Update
Today mom and dad spent the biggest chunk of the day at Kelsey-Seybold. First we
meet with two pediatricians who are also pulmonary specialists. We thought they were
both great, so luckily we don’t have to choose just one. They can both see Rees. They
were very positive and made us feel more comfortable about brining Rees home. We
also met with his three nurses. These type of appointments are normally scheduled a
month or two before the baby is born, so to avoid confusion, we didn’t tell the
appointment desk Rees was already here. They did seem a little puzzled when skinny
me kept answering that my baby is due in February.
After a couple hours in pediatrics, we went up to hematology/oncology for my
appointment. I am going up on my Gleevec to speed up the “molecular response.” I
have been on a very low dose, so I am going up to the standard dose. Otherwise I am
doing very well. I don’t have another appointment for 3 months! Hopefully the next time
we go to Kelsey it is to bring Rees in for his first appointment. My doctor and nurses are
so excited that they will get to peak in on Rees when he comes for his doctor visits
since they have closely followed us for the last 7 months.
Rees had a great day. He is having no troubles with his feeds. No poop has come out
yet, so we are anxious to find out where it will appear, diaper or belly.
1/30/2007 I got a bottle for my 3 month birthday!
Just when we think we have a plan, we switch gears. Today Rees’ surgeon came in and
was so excited to see Rees on the cannula. After he found out Rees’ direct bilirubin
level was rising and the his fistula holes had gotten a little bigger, he said “let’s start
feeding him.” I almost fell over. He thinks that if the fistula was going to close on its
own, it would have probably done so by now and he doesn’t want to chance the liver
getting worse. If he has more poop coming out of his belly causing it to become red and
irritated again, then they will consider doing surgery sooner than later. If Rees does
well with his feedings and more poop comes out of his hiney than out his belly, we may
take Rees home sooner than later and then do surgery this summer when he is much
bigger and stronger. (No, they haven’t given us any idea of a timeframe for when he
would go home.)
Then the next shocking event…Rees had his first bottle today. This was just a trial run
and he did pretty well. He started sucking right away and managed to swallow some
down without spitting it back up, but tuckered out pretty quickly. This was a lot to ask a
little guy who just started breathing on his own 24 hours before. The plan is to try
bottles again next week when he has a little more experience with breathing before
sucking and swallowing are added to the equation—a very complex thing for preemies
to do. This week he is going with a feeding tube. The great news today is that he
started sucking right away. Many preemies who have been intubated and on iv nutrition
for long periods of time are very sensitive to anything going in their mouth or down their
throats, so they take along time to accept the bottle.
More good news about eating: Now that he has food being processed in his tummy, his
liver will immediately start the healing process, which will get a boost from a medicine
called actigall tomorrow. As Rees builds up the amounts of his feeds, his amount of iv
nutrition (TPN) will be reduced. When he is receiving all of his nutrition from formula, he
will get his central line removed. This will be a very momentous step as the central line
is the main potential source of serious infection right now.
And that’s not all, Rees had his eyes checked today and they are still progressing in the
right direction. We can’t wait until the yellowness from the jaundice goes away.
Now that Rees is doing so well, mom and dad can hold him as long as we want, as many
times a day as we want. We only put him down when they kick us out at shift change
and when our tushies can’t take the hard wooden rocking chair any longer. Well, we
also have to share with his sweet Aunt Romannee, his nurse—she never wants to put
him down. If she didn’t have to take care of Rees’ neighbor, mom and dad would never
have a turn to hold Reesy. We are so blessed that everyone taking care of our little
angel loves him so much.
Click here, for a short action clip of Rees drinking from his bottle!
1/29/2007 Breathing on my own! No more cpap!
Happy Birthday Cousin Thomas
Once again Rees has made a big step forward! Around lunch time, his doctors and
nurses decided to take Rees off of the CPAP and start him on the nasal cannula. He has
been loving every minute of it! Rees is not the only happy to have the large contraption
off his face, he is now free to wiggle as much as he wants with no fear of dislodging his
breathing tubes. Rees was the talk of the NICU today - all the nurses came by to see
him. They are all so proud of their miracle baby. Another bonus is that because of its
small size, we can see much more of Rees' face! Mom and dad are soooo proud of him
for breathing like a big boy. He is indeed a big boy! 5 and 1/2 pounds.
Rees is doing all of the breathing on his own. The nasal cannula just provides a higher
oxygen concentration than room air. Room air is 21% oxygen, so they are giving Rees a
boost. As soon as they ween him down to 21%, he will be tube free. Some babies go
home on the cannula (the tanks older folks pull around when they are on the go). Rees
may love his pure air so much, one day he may move to California for the numerous
oxygen bars.
This is the week that we thought the surgery go/no go decision would be made, but
today the surgeons want to try to wait two more weeks to see if the fistula will close on
its own. Rees’ biliruben levels have gone up, but they have not reached the critical level
at which they will need to consider surgery sooner rather than later. His fistula holes
have gotten a little bit bigger today and he is draining a little bit more from them—
hopefully this was getting the last of the stool out from all his wiggling around today.
1/28/2007 Evening Update
Rees snoozes most of the day away, but when he is awake, he is so alert and watches
what is going on around him. He also focuses on the funny cpap gadget and has
become very quick and dismantling it. Speaking of cpap—he is now at one of the lowest
pressure settings (peep 3 with Hudson prongs). After some time at this setting, the
next step will be the nasal cannula (much much smaller prongs with even smaller
hoses that just give a little bit higher oxygen concentration than room air).
Because of all of the bugs going around that mom and dad need to avoid, we have been
doing a mini mass with Rees on Sunday mornings. We say all of the mass and do the
readings—if we can time it right we even get communion from the Eucharistic minister
that comes to the hospital. Today’s readings were especially speaking to us, so we are
going to share a few tid bits: “Before I formed you in the womb I knew you, before you
were born I dedicated you” (Jeremiah 1) & the second we chose for our wedding “So
faith, hope and love remain, these three; but the greatest of these is love” (1 Corinthians
12). It was so special to read these to our little angel.
Home nursery update: Mark finished painting and put the bed together. I got out the
linens out. The finishing touches need my mom’s special touch—hopefully she is well
next week when she is in Houston. She has a few custom details to sew.
1/27/2007 Happy Birthday Gee Gee
This evening dad and Rees are having some guy time. Now that Rees is doing so much
better with no minute-to-minute, critical issues, the big question I’ll have when I call to
check on him later will be “what outfit does Rees have on and how much does he
weigh?” Today he is up to 5 lbs, 5.5 oz.
Rees is still sneezing a bit from the air blowing in his nose. I finally caught it on film a
couple of days ago.
Click here to see a short, action clip of Rees sneezing!
1/26/2007 Evening Update
Rees was jammin’ to Mozart with his mp3 player today. His nurses thought he was
ready to try it out today and he seemed to enjoy it. It is so amazing how much calmer he
is now that he is feeling better and on cpap. He went through such a long phase of
getting mad very often, that it is so nice to see him comfortable.
It is now 12:30 a.m. Mark is painting Rees’ room. We are finally starting to get things
ready for the little guy to come home. If I stay awake for another hour, we may have to
pop open some champagne. This will be Rees’ one week anniversary on cpap.
1/25/2007 Evening Update
Rees is continuing to do very well on cpap and they are starting to gradually turn down
the pressure and oxygen. We are so proud of him! The only challenge is keeping him
from wiggling out of his nasal prongs. He is starting to notice his mobile above his bed.
He calmly keeps his eyes open and looks around. He is such a sweet boy. When he is
awake it is very hard to say good bye.
Mom’s new favorite thing in the world is putting on a surgical glove and letting Rees
suck on my finger. It is so amazing to feel him in action.
This week has flown by very quickly. Rees has had little poops from his hiney every day
and the amount from his fistula is slowing down. Hopefully the fistula will close up by
next week, so he can avoid surgery and start eating. His belly looks better than it has
ever looked since he first got sick in November—it is not red, irritated or swollen, and
the incisions have healed nicely.
The iv nutrition (TPN) which is helping him grow so well is also taxing on his liver, which
is causing a couple of problems: high direct bilirubin (form of jaundice, different from
the type treated with the blue light shortly after birth) and a mild case of rickets (soft
bones from mineral deficiencies). These are both problems that can be reversed as
soon as he gets real food in his system.
A few updates about Rees’ friends: Lily & Sophia who were born at 10 & 11 ounces, just
celebrated their 2 week birthday. We are so proud of them! We thank God for keeping
all of these tiny babies (and former tiny babies) so resilient!
1/24/2007 Evening Update
5 pounds .3 ounces!!!!
1/23/2007 Evening Update
Tuesday is eye day in the NICU, so mom rushed to the hospital as early as she could.
(Dad goes very early at 5:45 am, but this is even too early for eye surgeons.) You can
never predict when a specialist is coming, last week he called at 8:30 am with the
surgery call. Today he got there at 11:15—a long wait for an anxious mom.
At least I was waiting for good news! Rees’ eyes have started to improve. He is a very
cautious doctor when explaining things to parents and never wants to get your hopes
up, even if you prefer to think on the bright side. So it was very relieving to hear that
“We aren’t out of the woods yet, but most babies who respond so well, so quickly have
a good end result.” Alleluia. He will continue to check Rees’ beautiful eyes every
Tuesday.
Rees is doing so well on his cpap and his doctors are so confident in his breathing that
they removed his ventilator that was programmed for cpap settings and replaced it with
a cpap-only machine. They don’t switch the machines right away incase they need to
reintubate.
Today Rees was stylin’ and profilin’ in his cpap sweatband and athletic socks with grey
toes and heals. They made him a headband, because he hated the standard issure
cpap hat—his nurses spoil him so. His headband has foam letters that spell “CUTE.”
That will work until he gets his Nike sponsorship.
1/22/2007 Evening Update
Mom and dad are both getting turns each day to hold Rees! What a treat. When we
aren’t holding our little angel, we are amazed at watching his little chest move gracefully
up and down as he breathes on his own. We are so thankful to God for each breath.
When the ventilator was doing the breathing, his chest went up and down in mechanical
pulses.
Rees had a nice and quiet day. Today his nurse suggested we get him a mobile, since
he is doing well in his clothes and the warmer over his bed is off. So mom came back in
the evening with a Sesame Street mobile. He noticed Elmo when it was sitting next to
him, but so far our sleepy boy hasn’t noticed the bright characters hanging above his
bed.
1/21/2007 Happy Birthday Uncle Randy
Day 2 on cpap went very well. We are all enjoying life without the breathing tube.
The nurses are more relaxed and so are mom and dad, knowing that we don’t have
to fear every turn of Rees’ head. Rees seems to be much more comfortable too. We
think he has figured out that even though he has an annoying contraption on his face,
it is much better than a tube down his throat.
The cpap is constantly blowing air into Rees’ nose and frequently makes him
sneeze. His sneezes while his breathing tube was in were silent. But now he has
very very loud sneezes that sound like a baby duck. After he sneezes, he looks
around to see where that funny noise is coming from. He still doesn’t know he can
make sounds. So cute! His voice is still a little horse from the irritating breathing
tube, but he is slowly starting to make more little sounds. He certainly is not a cry
baby. We thought that he would immediately start crying like his noisy neighbors,
but he just makes faces when he is mad.
He is also enjoying being swaddled in his blanket and wearing big boy clothes. Today
he put on his Chicago Bears hat and socks that look like football cleats for a quick
photo op with dad before the big game. Dad had his Bears golf shirt and satin jacket
on—their 2nd time to wear matching outfits.
Rees has nearly given several doctors heart attacks in the last couple of days. They
didn’t know he had moved to a different pod and got really scared. They were thrilled
to find out Reesy was in a new spot breathing like a big boy in his big boy clothes.
When a baby is on cpap, they chart their A’s and B’s (apnea: stop breathing,
bradycardia: drop in heart rate). If they have too many severe episodes, they have to
go back to the breathing tube. Rees had his first two episodes of A’s this evening
after being on cpap for about 36 hours. He received a heavy does of caffeine to help
stimulate his system so he doesn’t forget to breath—I guess he was a little too cozy
and relaxed in his cuddly outfit. Hopefully this will do the trick and Rees will continue
doing well breathing deep breaths.
More good new on the poop report: he had two poopy diapers today. Yippee! The
more that comes out his hiney, the less comes out his belly and keeping the fistula
open. (Please remind us in a year or so that we use to do cheers for poopy diapers.)
1/20/2007 Evening Update: 1st CPAP, now Clothes
Rees is still doing well on his cpap! He kept wiggling our of his first type of prongs
(argyle) and was switched to a different type this morning (Hudson), which are quite
a contraption, but do a better job holding the prongs in his nose if he wiggles.
The new cpap prongs are connected secured with Velcro to a hat. Rees got way too
hot with his hat. This is good news! He has started to regulate his own body
temperature, so they turned off the warmer on his bed. The nurse said Rees needs
clothes—stat. So, mom went on a quick shopping spree buying every preemie outfit
she could find in an hour. He looks so cute in his baby clothes. His has quite an
extensive wardrobe—I hope he can wear all of his new outfits before he outgrows
them.
More good news……The last x-ray in the dye study for his tummy was done at noon.
The dye came out his hiney!!!! This is wonderful news. There are no strictures and
the surgeons now want to wait 2 weeks before they do anything. He thinks there is a
good chance that the fistula will close on its own and not require surgery. The
largest hole, which was once the size of a dime, is now smaller than a pinhole and
can only be spotted when stool is being forced out.
We are praying hard that the fistula closes on its own. This type of surgery to fix the
intestines is considered a bigger deal than heart surgery, because the intestines are
so delicate and the area that needs repair is hard to find since the irritated bowels
are stuck together by hardened tissue. They usually don’t even attempt this surgery
in adults, but because these little ones are so resilient, they can do well after a long
and hard recovery.
1/20/2007 Morning Report: C-PAP Again!
For some reason Dad woke up at 5 o'clock this morning and rather than going back
to sleep he pulled one of mom's tricks and called the NICU to check on Rees.
His nurse Kaitlin was very excited to inform us that Rees decided to remove his
breathing tube at one o'clock in the morning! Instead of reinserting another tube the
nurses and doctors decided to give C-PAP another try.
Of course, Mom and Dad jumped out of bed and were at his bedside fifteen minutes
later. Rees is doing much better this time around and we are very hopeful that he
will continue to hold his own.
In other news, tomorrow (Sunday) will be the one week anniversary of the Houston
Marathon!
Amy was honored that her Aunt Cynthia chose to run the half marathon on her behalf
with the Leukemia and Lymphoma Society's Team in Training. Aunt Cynthia's
enthusiasm must have been contagious because she persuaded her husband Bill to
join the training and run along with her. We ventured over to the course and saw the
two of them trucking along near the halfway point.
Unfortunately, we missed seeing our pair cross the finish line! Rees' surgeon
stopped to check on him during his rounds and we rushed to Women's to get the
latest news (that Rees would need additional tests to determine the state of his
tummy). Lucky for us, the Houston Marathon website has posted pictures and
videos of the runners crossing the finish line! Click to watch Bill and Cynthia
cross the finish line. We are thankful for Bill and Cynthia and hope they had a great
time (what I mean by good time is that I hope they enjoyed themselves - after taking 6
hours to complete my only marathon I quit judging runners by their clock time) !
1/19/2007 Evening Update
Rees’ GI study went pretty well. The conclusion is that he has no complete strictures
in his intestines, but that there is a narrowing near the fistula (where he repaired his
perforation by creating a walled-off exit for stool to escape). The surgeons need to
remove this portion of his intestine. The plan for the big surgery is in 10 days. Until
then, he can’t eat and will remain on the iv fluids. We are hoping he relaxes and
rests until the big day with no drama.
1/18/2007 Happy Birthday Uncle Matt & Aunt Liz
Last night Rees weighed in at 4 pounds 12.9 oz. What a big boy!
We had a nice day in our new pod. It was dad’s turn to hold Rees and they had a nice
time. This evening though, Rees was in a bad mood. He couldn’t get comfortable in
his limited choices of positions—mom knows how tough this is and how cranky it
can make you. He is going to love freedom when he is finally free of his tubes and
wires.
Tomorrow Rees has his 2nd GI x-ray study to help the surgeons with the game plan
to fix his tummy.
1/17/2007 Evening Report
At about noon today Rees was starting to really wake up from his mega-doses of
pain and paralyzing meds for his eye surgery. His eyes are a little red and puffy, but
his nurses say they look really great.
We had a quiet day, but he has a big night planned. Rees is moving to a different
pod. His current pod is one of the noisiest (next to the respiratory therapist’s room,
behind the delivery assessment area for twins, and next to labor and delivery phone
that ring whenever a baby in need of help is born). His nurses have been
campaigning for Rees to move for about 2 months because he is extra sensitive to
noise and light, and he is in a high traffic area. When things get too loud his oxygen
saturation nosedives. He could not be moved before now because he was not stable
enough or had too much peripheral equipment. We are happy his new spot will be
therapeutic for him.
1/16/2007 Evening Report - Eye Surgery
Mom was woken up this morning with a call from the eye doctor. Rees needed eye
surgery on both eyes to correct a condition called ROP (retinopathy of prematurity),
which had just appeared and was still in Stage 1 (the mildest). They originally plan
was to operate on Wednesday or Thursday, but by the time I got to the hospital they
had scheduled it for today because of surgeon and OR schedules. Luckily Dad was
there when I got to the hospital. We were both there to talk to his doctors and
nurses. Rees’ main doctor this week is very conservative and never lets you get
your hopes up. So when she seemed upbeat and positive about the surgery, it
helped relieve our fears. Right before the surgery at the time parents sign all of the
consent forms, the eye doctor went through all of the details of the surgery, including
the risks, which are very hard to hear.
This is even more complicated to try to explain than his belly, so here goes….The
blood vessels in the eyes start forming at 16 weeks gestation and are fully formed by
the end of gestation at 40 weeks. If babies come early, they are exposed to much
higher oxygen levels than if they had stayed in mom’s tummy getting their oxygen
from the placenta. This higher amount of oxygen confuses the signal in the eye that
tells the blood vessels to keep growing. Since Rees was born at 23 weeks, we were
told early on that there was 99% chance he would need surgery. During the
procedure the doctor zaps a laser around the very outside of the retina, all 360
degrees, to stop the signal that is telling his blood vessels to stop growing. This will
effect his peripheral vision, but he still has a chance for 20/20 vision (if he takes after
dad). New healthy blood vessels should grow to replace the immature vessels,
which in Rees’ case were also thick and starting to curl (called plus disease).
The surgery took 45 minutes per eye and went very well with no complications, but
we won’t know if it did the trick for several weeks/months. A small percentage of
babies who undergo this surgery require further surgeries, and a small percentage
of those babies could loose their vision completely. So we will be praying hard that
his pretty eyes will be able to see all of the beautiful things in this world.
Rees did very well though it all. He got a large dose of pain medicine and paralyzing
medicine for the procedure, which has not fully worn off yet. His is already back to
his pre-surgery ventilator settings. What a tough guy.
Yesterday and today he got his vaccinations—yes, even babies who come 4 months
early get their immunizations at 2 months. Tomorrow the only thing planned is rest.
1/15/2007 Evening Report
Rees had a very busy day today! He went on his first roadtrip outside the NICU.
Since he is such a big boy he was stable enough to go downstairs for his x-ray
study. They put dye into his hiney to see if he has any strictures in his large
intestine. The results came back tonight with great news: no strictures. The odd
thing is that instead of the dye returning back down the path that it was put in, the
dye is coming out of his abdominal drain site. His doctor said that this isn’t good or
bad, just interesting.
In the next few days they will follow up with a GI dye study to follow the path from the
stomach to the intestines. If no strictures are found, which seems like that will be
the case, he will probably need surgery to close off his homemade ostomy, but it
may not be as radical as first thought.
Last night Dad said he thought Rees’ eyes were now brown. I didn’t think he could
really tell, but today when the lights were on bright, which he usually hates, Rees had
his eyes open wide and they definitely looked brown in the light.
Rees also had another graduation. He is now in newborn diapers. His preemie size
diapers were fitting nice and snug, but were also not holding all of the output. His
new diaper looks enormous next to his first diaper that, when folded, was the size of
a deck of cards.
1/14/2007 Evening Report
The runners had a successful half marathon. Mark and I found them in the crowd and
cheered as they zoomed by. We cheered on all of the Team in Training runners who
could be identified by their purple singlet (fancy term for their running top—not the same
as a baby onesie).
Rees has a big week this week. They stopped his feeding today because since he was
reintroduced to food, he has not passed any through. Tomorrow he will have a dye x-ray
study from the bottom up to try to identify any strictures (severe narrowing or
blockages) in the intestines. If a stricture is found, he may have surgery very soon to
repair the funny spots in his intestines. He his much bigger now, so surgery is much
safer than when the problem appeared six weeks ago.
Why would they prefer to do surgery soon than later? If he doesn’t poop, he can’t have
formula in his tummy. If he does get formula in his tummy, he is at risk of developing
liver problems from the potent iv nutrition.
Please pray for our little angel’s belly this week….and also for mom and dad. We are
very nervous waiting for the tests and results.
1/13/2007 Amy’s 1st Marathon
Tomorrow is my first marathon! Although I am far from being in marathon shape, my
awesome Aunt Cynthia (Cindy) is running the Houston Marathon in my honor. Soon after
I was diagnosed with CML, she joined the Leukemia and Lymphoma Society’s “Team in
Training.” She is running the half marathon tomorrow. I am so proud of her for tackling
such a challenge. My Uncle Bill also caught marathon fever. Good luck to you both in
the big race. Tonight they came over for a carbo-load meal before the big day.
If you would like to join the “Team” through a small donation, click here.
The LLS does a wonderful job funding research and helping families with expenses
during treatment.
As for our pregnancy/leukemia/preemie triathlon, our little Olympian is back on his
formula with no problems. This will hopefully lead to getting off of the iv nutrition and
helping his liver function. Today Rees is also off his antibiotics, so mom has been very
nervous for these two big events to happen at once, but so far so good. Tomorrow is
his last day on the antifungal medicine for the yeast infection in his urine. He is also
down to 25% oxygen on his ventilator (room air is 21%) which is a great accomplishment.
1/12/2007 Evening Update
Rees had a good day today. The doctor doubled Rees’ Pedialyte because he is doing so
well getting it down. He graduated to the next size pacifer. We love it when he
outgrows something! He likes this one much better, although he seems to prefer
sucking on his breathing tube.
His eyebrows have reappeared—this time they are blonde. I guess he only wanted to
take after mom for a little while. (They disappeared around Christmas when his dry skin
fell off after he slimmed down from being very swollen.)
1/11/2007 Evening Update
This morning Rees was very calm after his dramatic evening. He was very still and kept
his little eyes wide open for the longest I’ve ever seen. I wonder what he can see now. I
tried not to blink because I wanted to gaze in his little eyes for as long as possible.
The big step for the day was that he is slowly starting back his feeding. He is now
getting Pedialyte every three hours. He is doing well digesting it and this evening it
looked like the processed liquid was going out his drain site.
This afternoon however, he was back to his squirmy self with the attitude. His nurse
told me I should buy Rees some mittens so it would be harder to grab his tubes. At the
shop, the smallest mittens looked so tiny next to all of the other sizes that I thought they
might be too small for Rees. I didn’t open the package incase I needed to return them.
Oh no--he still has plenty of growing room. He hated them so much I didn’t make him
wear them.
1/10/2007 Evening Update
The doctors mapped out a detailed, multiple-step process to get Rees ready for cpap
(continuous positive air pressure) on Friday. Rees, not being one to wait for anyone else’
s plans, extubated himself late this afternoon. He had a couple of good hours on cpap
until it got really hectic in his room. He hates noise and light and was too irritated to
continue. When the doctor put his breathing tube back in she said his trachea was
quite inflamed making it a little harder to breath. Rees will receive a few doses of
steroids that will help reduce the swelling in his trachea and make it easier to breath on
his next cpap attempt. Of course we don’t know when that will be, but we hope it is
planned with his nurses pulling out his breathing tube.
Rees has a new roommate a 23-week twin. She and her sister are doing well. We were
so happy we were able to introduce her parents to Rees. Seeing his chubby double chin
made them smile. We know how meeting other babies who have been through similar
situations can help you through the scariest times.
1/9/2007 Evening Update
Today Rees did a little test to see if he might me ready for cpap (the step between
ventilator and breathing on your own). He still has in his breathing tube, but for 15
minutes they turned the ventilator to cpap settings, which is much less breathing
support than his normal ventilator settings. He did great. It won’t be too long until we try
cpap again. Ideally he will get steroids 24 hours before the cpap. The steroids will help
his trachea, which probably needs a boost after being irritated by the breathing tube for
so long.
He also got a good report from the eye doctor that he has no problems. He said there is
a 95% chance that Rees develop ROP and will need the surgery (correcting blood
vessels in the eyes that do not develop correctly in preemies). However, we think that if
anyone can beat the odds, it will be our tough angel Rees.
Rees has two friends who we miss that are now at Texas Children’s: Adam (Grantley’s
twin) and Cooper (Kayla’s twin). We have been praying for them so that they will be able
to go home soon and be reunited with their brother and sister soon.
1/8/2007 Evening Update
When I called to check on Rees at 4:30 this morning, I got very exciting news. The nurse
just weighed Rees and he tipped the scale at 4 pounds, 10 ounces. Last week he was
barely over 4 pounds, but he was so swollen. He still has edema now, but not 10
ounces, so we are safe in saying he is over 4 pounds. He is also almost 15 inches long.
He was 11.5 at birth.
Rees wiggled out of his breathing tube again early this morning. The excitement must
have worn him out because he slept most of the day.
It looks like his urine is now clear of infection. The redness in his belly is almost
undetectable. The doctors are planning on continuing his antibiotics for one more
week. Then, the plan is to do another x-ray study of his belly and if all goes well, Rees
will get to start feeding again. His iv nutrition is obviously helping him grow into a
chubby fellow, but we need to get food in his tummy to make the liver happy, which is
working overtime while on the iv nutrition.
1/7/2007 Evening Update
About a month after Rees was born, we got a letter in the mail from the health
department saying that a blood test indicated he had a problem with his thyroid, which
could lead to all types of severe problems including mental retardation. When I brought
it to the hospital they said it was a routine test done at birth, but not to worry because
thyroid function does not start until week 34 of gestation. Preemie orientation should
include a note to disregard scary thyroid letters that come in the mail.
Today, the endocrinologist came and said that Rees’ thyroid is now functioning in the
normal range. Yippee.
We are now on a standing order for one holding a day with the option to do skin-to-skin.
Today was mommy’s turn. I could feel little breaths coming from his nose. Amazing.
Rees also got to hang out with his Pop Pop this morning (Texas grandpa).
1/6/2007 Evening Update
The only big change to report on today is that Rees has developed quite an attitude. He
doesn’t like to be messed with—unless he is getting a bath, which he loves. Any other
time his nurses tend to him, even if it is just to take his temp (underarm method only), he
throws up his arms, pulls back his head, turns red and drops his oxygen level. We told
him he really needs to chill out and relax.
The nurses do say feisty babies tend to do better than docile babies.
1/5/2007 Evening Update
We were having an uneventful, restful day. Rees was on his belly, which his surgeon
thinks is best for his troubled tummy, but then he extubated himself. Instead of pulling
out the tube with his hand, like the last time, he did a push up, picked up his head and
turned his head to the other side. I had no idea he had that much strength.
Rees is doing much better from his latest infection and tummy problems. The doctors
are hoping that next week is his last week of antibiotics for this round and that soon
after that when his swelling goes down we can start working on graduating from the
ventilator to CPAP.
I finally got to meet Eli and Bennett’s grandmother who has CML. She is an amazing lady
with an inspiring, positive outlook. She loved meeting Rees the miracle baby.
1/4/2007 Evening Update
Rees made his dad very proud today. He won his first tee tee contest—he squirted his
nurse square in the center of her scrubs top when she was changing his diaper. She
had to change clothes and clean her badge. Good thing she loves him so much.
Good tummy news today. Rees continues to keep his options open: today he had poop
from his drain site in his tummy and from his hiney. The hiney was very good news.
They thought his intestines were completely blocked, but it seems when they cleaned
out his drain site yesterday, it helped things move along inside the intestines as well.
Daddy got his turn to hold him skin-to-skin tonight. Watching daddy hold Reesy is the
second best thing to holding him myself.
1/3/2007 Happy Birthday Mom! Evening Update
While pregnant and going through my treatments, the reports and introductions to the
groups of doctors coming to see me started with “32 year-old female, pregnant with
CML.” Then, I wondered if they were going to change my age on all of the reports after
my birthday—but now everything has changed. Today I am “33 year-old female, gravida
1 para 1, CML in hematologic remission.” Gravida 1 para 1 is medical terms for 1
pregnancy and 1 living child—wonderful labels.
Speaking of my beautiful living child, we had an up and down day, but ended on a high
note. They switched all of his antibiotics for his infection this morning because he has
not improved very much over the last few days. After the doctors poked on his tummy
so much today, Rees gave me a huge poopy for my birthday! It was from his drain site in
his belly and not his hiney, but any exit site is fine with his doctors. This really helped
his tummy to do better and the surgeon thinks we won’t have to wait as long for the
surgery to permanently fix him up. He is thinking 4-6 weeks instead of 8 or more
weeks.
Rees had two special visitors today: LuLu and Papa Joe, his great-grandparents. It was
their first time to see him since early November, so they were shocked at how big he
has gotten. Rees wanted me to tell Aunt Petey thank you for driving them to Houston
and that he can’t wait to meet her too.
My birthday present from Rees’ doctors was a nice, long skin-to-skin hold tonight after
the busy day. Rees and I both loved it—it has been several days since our last holding.
1/3/2007 Happy Birthday Amy! Morning Report
We plan to have a birthday lunch with Amy's grandparents and aunt Petey. They are
visiting from Bridge City, Texas. Tonight we have a NICU parents class during the
evening break.
Rees' nurse said that he had a very good night.
Happy Birthday Rees' Mom!
1/2/2007 Evening Update
Rees had a much better day today. The redness in his belly is now decreasing and his
blood pressure medicine is at the lowest possible dose. The other great news is that
his blood cultures are still clear of infection, so the doctors are very confident that the
fungal infection in his urine did not spread to his blood.
1/1/2007 Happy New Year's Night
Rees had a pretty good day today, which means he chilled out most of the day and there
were no changes. After several not so good days, we think days with no changes are
great.
We told Rees that 2006 was a year of adventures and milestones for mom and dad and
that we accomplished many things that not many people can do in less that a year:
travel to Egypt, celebrate 1st wedding anniversary, try to get pregnant, get pregnant, get
cancer, have a baby and go into remission (level 1). Whew…it is still hard to believe.
We hope our big milestones in 2007 are bring Rees home from the hospital, celebrate
2nd wedding anniversary, go into complete remission (level 3), and celebrate Rees’ 1st
birthday.
Last night Mark and I went to eat dinner with Rees’ friends Ellie and Bennett’s parents
(like the majority of Rees’ friends, they are twins). We mostly talk about the little ones,
but I asked the mom where she grew up. She said she grew up in the Midwest, but they
moved to Houston when she was in high school because her mom had cancer. I
remember seeing her mom one day, so I asked if she was ok now. She said yes she is
now doing great. I asked what kind of cancer she had, and she replied that it was a very
rare form of cancer that not many people had heard of called CML. I almost fell over.
After I told her our adventure story, she said that when diagnosed 12 years ago the
doctors told her mom she had about 3 months to live, but she fought her way through
several different meds that helped her until the miracle pill was available. She was in
the original Gleevec studies. Tomorrow I get to meet her. I know I am going to burst into
tears (like I am right know thinking about it) to meet someone who helped pave the way
for me to have a healthy life.
Rees also had surprise visitors to the hospital tonight--Dick and Jean, friends of his
Indiana grandparents. They brought him a travel bed, so he'd be ready for his first trip to
Indiana as soon as he gets his walking papers.
Happy and healthy 2007 to you all, Amy, Mark & Rees
1/1/2007 Happy New Year! (morning)
Rees is celebrating the New Year with his nurses, doctors and respiratory therapists.
They are having a potluck lunch and Rees volunteered to provide "Rees' Famous Roast
Pork Tenderloin." Rees will continue with his diet of TPN and lipids (intravenous
substances that substitute for milk) but hopefully he will get a whiff of the feast.
Mom and Dad will go to their friend's Ruth house this afternoon. Every New Years Day
she cooks up lots of black eyed peas and invites her friends over to chow down.
Supposedly, eating black eyed peas will bring one luck in the New Year.
Dad had never heard of this tradition growing up in the Midwest but it seems to be the
rage down here in Texas.
1/31/2007 Evening Update
Today mom and dad spent the biggest chunk of the day at Kelsey-Seybold. First we
meet with two pediatricians who are also pulmonary specialists. We thought they were
both great, so luckily we don’t have to choose just one. They can both see Rees. They
were very positive and made us feel more comfortable about brining Rees home. We
also met with his three nurses. These type of appointments are normally scheduled a
month or two before the baby is born, so to avoid confusion, we didn’t tell the
appointment desk Rees was already here. They did seem a little puzzled when skinny
me kept answering that my baby is due in February.
After a couple hours in pediatrics, we went up to hematology/oncology for my
appointment. I am going up on my Gleevec to speed up the “molecular response.” I
have been on a very low dose, so I am going up to the standard dose. Otherwise I am
doing very well. I don’t have another appointment for 3 months! Hopefully the next time
we go to Kelsey it is to bring Rees in for his first appointment. My doctor and nurses are
so excited that they will get to peak in on Rees when he comes for his doctor visits
since they have closely followed us for the last 7 months.
Rees had a great day. He is having no troubles with his feeds. No poop has come out
yet, so we are anxious to find out where it will appear, diaper or belly.
1/30/2007 I got a bottle for my 3 month birthday!
Just when we think we have a plan, we switch gears. Today Rees’ surgeon came in and
was so excited to see Rees on the cannula. After he found out Rees’ direct bilirubin
level was rising and the his fistula holes had gotten a little bigger, he said “let’s start
feeding him.” I almost fell over. He thinks that if the fistula was going to close on its
own, it would have probably done so by now and he doesn’t want to chance the liver
getting worse. If he has more poop coming out of his belly causing it to become red and
irritated again, then they will consider doing surgery sooner than later. If Rees does
well with his feedings and more poop comes out of his hiney than out his belly, we may
take Rees home sooner than later and then do surgery this summer when he is much
bigger and stronger. (No, they haven’t given us any idea of a timeframe for when he
would go home.)
Then the next shocking event…Rees had his first bottle today. This was just a trial run
and he did pretty well. He started sucking right away and managed to swallow some
down without spitting it back up, but tuckered out pretty quickly. This was a lot to ask a
little guy who just started breathing on his own 24 hours before. The plan is to try
bottles again next week when he has a little more experience with breathing before
sucking and swallowing are added to the equation—a very complex thing for preemies
to do. This week he is going with a feeding tube. The great news today is that he
started sucking right away. Many preemies who have been intubated and on iv nutrition
for long periods of time are very sensitive to anything going in their mouth or down their
throats, so they take along time to accept the bottle.
More good news about eating: Now that he has food being processed in his tummy, his
liver will immediately start the healing process, which will get a boost from a medicine
called actigall tomorrow. As Rees builds up the amounts of his feeds, his amount of iv
nutrition (TPN) will be reduced. When he is receiving all of his nutrition from formula, he
will get his central line removed. This will be a very momentous step as the central line
is the main potential source of serious infection right now.
And that’s not all, Rees had his eyes checked today and they are still progressing in the
right direction. We can’t wait until the yellowness from the jaundice goes away.
Now that Rees is doing so well, mom and dad can hold him as long as we want, as many
times a day as we want. We only put him down when they kick us out at shift change
and when our tushies can’t take the hard wooden rocking chair any longer. Well, we
also have to share with his sweet Aunt Romannee, his nurse—she never wants to put
him down. If she didn’t have to take care of Rees’ neighbor, mom and dad would never
have a turn to hold Reesy. We are so blessed that everyone taking care of our little
angel loves him so much.
Click here, for a short action clip of Rees drinking from his bottle!
1/29/2007 Breathing on my own! No more cpap!
Happy Birthday Cousin Thomas
Once again Rees has made a big step forward! Around lunch time, his doctors and
nurses decided to take Rees off of the CPAP and start him on the nasal cannula. He has
been loving every minute of it! Rees is not the only happy to have the large contraption
off his face, he is now free to wiggle as much as he wants with no fear of dislodging his
breathing tubes. Rees was the talk of the NICU today - all the nurses came by to see
him. They are all so proud of their miracle baby. Another bonus is that because of its
small size, we can see much more of Rees' face! Mom and dad are soooo proud of him
for breathing like a big boy. He is indeed a big boy! 5 and 1/2 pounds.
Rees is doing all of the breathing on his own. The nasal cannula just provides a higher
oxygen concentration than room air. Room air is 21% oxygen, so they are giving Rees a
boost. As soon as they ween him down to 21%, he will be tube free. Some babies go
home on the cannula (the tanks older folks pull around when they are on the go). Rees
may love his pure air so much, one day he may move to California for the numerous
oxygen bars.
This is the week that we thought the surgery go/no go decision would be made, but
today the surgeons want to try to wait two more weeks to see if the fistula will close on
its own. Rees’ biliruben levels have gone up, but they have not reached the critical level
at which they will need to consider surgery sooner rather than later. His fistula holes
have gotten a little bit bigger today and he is draining a little bit more from them—
hopefully this was getting the last of the stool out from all his wiggling around today.
1/28/2007 Evening Update
Rees snoozes most of the day away, but when he is awake, he is so alert and watches
what is going on around him. He also focuses on the funny cpap gadget and has
become very quick and dismantling it. Speaking of cpap—he is now at one of the lowest
pressure settings (peep 3 with Hudson prongs). After some time at this setting, the
next step will be the nasal cannula (much much smaller prongs with even smaller
hoses that just give a little bit higher oxygen concentration than room air).
Because of all of the bugs going around that mom and dad need to avoid, we have been
doing a mini mass with Rees on Sunday mornings. We say all of the mass and do the
readings—if we can time it right we even get communion from the Eucharistic minister
that comes to the hospital. Today’s readings were especially speaking to us, so we are
going to share a few tid bits: “Before I formed you in the womb I knew you, before you
were born I dedicated you” (Jeremiah 1) & the second we chose for our wedding “So
faith, hope and love remain, these three; but the greatest of these is love” (1 Corinthians
12). It was so special to read these to our little angel.
Home nursery update: Mark finished painting and put the bed together. I got out the
linens out. The finishing touches need my mom’s special touch—hopefully she is well
next week when she is in Houston. She has a few custom details to sew.
1/27/2007 Happy Birthday Gee Gee
This evening dad and Rees are having some guy time. Now that Rees is doing so much
better with no minute-to-minute, critical issues, the big question I’ll have when I call to
check on him later will be “what outfit does Rees have on and how much does he
weigh?” Today he is up to 5 lbs, 5.5 oz.
Rees is still sneezing a bit from the air blowing in his nose. I finally caught it on film a
couple of days ago.
Click here to see a short, action clip of Rees sneezing!
1/26/2007 Evening Update
Rees was jammin’ to Mozart with his mp3 player today. His nurses thought he was
ready to try it out today and he seemed to enjoy it. It is so amazing how much calmer he
is now that he is feeling better and on cpap. He went through such a long phase of
getting mad very often, that it is so nice to see him comfortable.
It is now 12:30 a.m. Mark is painting Rees’ room. We are finally starting to get things
ready for the little guy to come home. If I stay awake for another hour, we may have to
pop open some champagne. This will be Rees’ one week anniversary on cpap.
1/25/2007 Evening Update
Rees is continuing to do very well on cpap and they are starting to gradually turn down
the pressure and oxygen. We are so proud of him! The only challenge is keeping him
from wiggling out of his nasal prongs. He is starting to notice his mobile above his bed.
He calmly keeps his eyes open and looks around. He is such a sweet boy. When he is
awake it is very hard to say good bye.
Mom’s new favorite thing in the world is putting on a surgical glove and letting Rees
suck on my finger. It is so amazing to feel him in action.
This week has flown by very quickly. Rees has had little poops from his hiney every day
and the amount from his fistula is slowing down. Hopefully the fistula will close up by
next week, so he can avoid surgery and start eating. His belly looks better than it has
ever looked since he first got sick in November—it is not red, irritated or swollen, and
the incisions have healed nicely.
The iv nutrition (TPN) which is helping him grow so well is also taxing on his liver, which
is causing a couple of problems: high direct bilirubin (form of jaundice, different from
the type treated with the blue light shortly after birth) and a mild case of rickets (soft
bones from mineral deficiencies). These are both problems that can be reversed as
soon as he gets real food in his system.
A few updates about Rees’ friends: Lily & Sophia who were born at 10 & 11 ounces, just
celebrated their 2 week birthday. We are so proud of them! We thank God for keeping
all of these tiny babies (and former tiny babies) so resilient!
1/24/2007 Evening Update
5 pounds .3 ounces!!!!
1/23/2007 Evening Update
Tuesday is eye day in the NICU, so mom rushed to the hospital as early as she could.
(Dad goes very early at 5:45 am, but this is even too early for eye surgeons.) You can
never predict when a specialist is coming, last week he called at 8:30 am with the
surgery call. Today he got there at 11:15—a long wait for an anxious mom.
At least I was waiting for good news! Rees’ eyes have started to improve. He is a very
cautious doctor when explaining things to parents and never wants to get your hopes
up, even if you prefer to think on the bright side. So it was very relieving to hear that
“We aren’t out of the woods yet, but most babies who respond so well, so quickly have
a good end result.” Alleluia. He will continue to check Rees’ beautiful eyes every
Tuesday.
Rees is doing so well on his cpap and his doctors are so confident in his breathing that
they removed his ventilator that was programmed for cpap settings and replaced it with
a cpap-only machine. They don’t switch the machines right away incase they need to
reintubate.
Today Rees was stylin’ and profilin’ in his cpap sweatband and athletic socks with grey
toes and heals. They made him a headband, because he hated the standard issure
cpap hat—his nurses spoil him so. His headband has foam letters that spell “CUTE.”
That will work until he gets his Nike sponsorship.
1/22/2007 Evening Update
Mom and dad are both getting turns each day to hold Rees! What a treat. When we
aren’t holding our little angel, we are amazed at watching his little chest move gracefully
up and down as he breathes on his own. We are so thankful to God for each breath.
When the ventilator was doing the breathing, his chest went up and down in mechanical
pulses.
Rees had a nice and quiet day. Today his nurse suggested we get him a mobile, since
he is doing well in his clothes and the warmer over his bed is off. So mom came back in
the evening with a Sesame Street mobile. He noticed Elmo when it was sitting next to
him, but so far our sleepy boy hasn’t noticed the bright characters hanging above his
bed.
1/21/2007 Happy Birthday Uncle Randy
Day 2 on cpap went very well. We are all enjoying life without the breathing tube.
The nurses are more relaxed and so are mom and dad, knowing that we don’t have
to fear every turn of Rees’ head. Rees seems to be much more comfortable too. We
think he has figured out that even though he has an annoying contraption on his face,
it is much better than a tube down his throat.
The cpap is constantly blowing air into Rees’ nose and frequently makes him
sneeze. His sneezes while his breathing tube was in were silent. But now he has
very very loud sneezes that sound like a baby duck. After he sneezes, he looks
around to see where that funny noise is coming from. He still doesn’t know he can
make sounds. So cute! His voice is still a little horse from the irritating breathing
tube, but he is slowly starting to make more little sounds. He certainly is not a cry
baby. We thought that he would immediately start crying like his noisy neighbors,
but he just makes faces when he is mad.
He is also enjoying being swaddled in his blanket and wearing big boy clothes. Today
he put on his Chicago Bears hat and socks that look like football cleats for a quick
photo op with dad before the big game. Dad had his Bears golf shirt and satin jacket
on—their 2nd time to wear matching outfits.
Rees has nearly given several doctors heart attacks in the last couple of days. They
didn’t know he had moved to a different pod and got really scared. They were thrilled
to find out Reesy was in a new spot breathing like a big boy in his big boy clothes.
When a baby is on cpap, they chart their A’s and B’s (apnea: stop breathing,
bradycardia: drop in heart rate). If they have too many severe episodes, they have to
go back to the breathing tube. Rees had his first two episodes of A’s this evening
after being on cpap for about 36 hours. He received a heavy does of caffeine to help
stimulate his system so he doesn’t forget to breath—I guess he was a little too cozy
and relaxed in his cuddly outfit. Hopefully this will do the trick and Rees will continue
doing well breathing deep breaths.
More good new on the poop report: he had two poopy diapers today. Yippee! The
more that comes out his hiney, the less comes out his belly and keeping the fistula
open. (Please remind us in a year or so that we use to do cheers for poopy diapers.)
1/20/2007 Evening Update: 1st CPAP, now Clothes
Rees is still doing well on his cpap! He kept wiggling our of his first type of prongs
(argyle) and was switched to a different type this morning (Hudson), which are quite
a contraption, but do a better job holding the prongs in his nose if he wiggles.
The new cpap prongs are connected secured with Velcro to a hat. Rees got way too
hot with his hat. This is good news! He has started to regulate his own body
temperature, so they turned off the warmer on his bed. The nurse said Rees needs
clothes—stat. So, mom went on a quick shopping spree buying every preemie outfit
she could find in an hour. He looks so cute in his baby clothes. His has quite an
extensive wardrobe—I hope he can wear all of his new outfits before he outgrows
them.
More good news……The last x-ray in the dye study for his tummy was done at noon.
The dye came out his hiney!!!! This is wonderful news. There are no strictures and
the surgeons now want to wait 2 weeks before they do anything. He thinks there is a
good chance that the fistula will close on its own and not require surgery. The
largest hole, which was once the size of a dime, is now smaller than a pinhole and
can only be spotted when stool is being forced out.
We are praying hard that the fistula closes on its own. This type of surgery to fix the
intestines is considered a bigger deal than heart surgery, because the intestines are
so delicate and the area that needs repair is hard to find since the irritated bowels
are stuck together by hardened tissue. They usually don’t even attempt this surgery
in adults, but because these little ones are so resilient, they can do well after a long
and hard recovery.
1/20/2007 Morning Report: C-PAP Again!
For some reason Dad woke up at 5 o'clock this morning and rather than going back
to sleep he pulled one of mom's tricks and called the NICU to check on Rees.
His nurse Kaitlin was very excited to inform us that Rees decided to remove his
breathing tube at one o'clock in the morning! Instead of reinserting another tube the
nurses and doctors decided to give C-PAP another try.
Of course, Mom and Dad jumped out of bed and were at his bedside fifteen minutes
later. Rees is doing much better this time around and we are very hopeful that he
will continue to hold his own.
In other news, tomorrow (Sunday) will be the one week anniversary of the Houston
Marathon!
Amy was honored that her Aunt Cynthia chose to run the half marathon on her behalf
with the Leukemia and Lymphoma Society's Team in Training. Aunt Cynthia's
enthusiasm must have been contagious because she persuaded her husband Bill to
join the training and run along with her. We ventured over to the course and saw the
two of them trucking along near the halfway point.
Unfortunately, we missed seeing our pair cross the finish line! Rees' surgeon
stopped to check on him during his rounds and we rushed to Women's to get the
latest news (that Rees would need additional tests to determine the state of his
tummy). Lucky for us, the Houston Marathon website has posted pictures and
videos of the runners crossing the finish line! Click to watch Bill and Cynthia
cross the finish line. We are thankful for Bill and Cynthia and hope they had a great
time (what I mean by good time is that I hope they enjoyed themselves - after taking 6
hours to complete my only marathon I quit judging runners by their clock time) !
1/19/2007 Evening Update
Rees’ GI study went pretty well. The conclusion is that he has no complete strictures
in his intestines, but that there is a narrowing near the fistula (where he repaired his
perforation by creating a walled-off exit for stool to escape). The surgeons need to
remove this portion of his intestine. The plan for the big surgery is in 10 days. Until
then, he can’t eat and will remain on the iv fluids. We are hoping he relaxes and
rests until the big day with no drama.
1/18/2007 Happy Birthday Uncle Matt & Aunt Liz
Last night Rees weighed in at 4 pounds 12.9 oz. What a big boy!
We had a nice day in our new pod. It was dad’s turn to hold Rees and they had a nice
time. This evening though, Rees was in a bad mood. He couldn’t get comfortable in
his limited choices of positions—mom knows how tough this is and how cranky it
can make you. He is going to love freedom when he is finally free of his tubes and
wires.
Tomorrow Rees has his 2nd GI x-ray study to help the surgeons with the game plan
to fix his tummy.
1/17/2007 Evening Report
At about noon today Rees was starting to really wake up from his mega-doses of
pain and paralyzing meds for his eye surgery. His eyes are a little red and puffy, but
his nurses say they look really great.
We had a quiet day, but he has a big night planned. Rees is moving to a different
pod. His current pod is one of the noisiest (next to the respiratory therapist’s room,
behind the delivery assessment area for twins, and next to labor and delivery phone
that ring whenever a baby in need of help is born). His nurses have been
campaigning for Rees to move for about 2 months because he is extra sensitive to
noise and light, and he is in a high traffic area. When things get too loud his oxygen
saturation nosedives. He could not be moved before now because he was not stable
enough or had too much peripheral equipment. We are happy his new spot will be
therapeutic for him.
1/16/2007 Evening Report - Eye Surgery
Mom was woken up this morning with a call from the eye doctor. Rees needed eye
surgery on both eyes to correct a condition called ROP (retinopathy of prematurity),
which had just appeared and was still in Stage 1 (the mildest). They originally plan
was to operate on Wednesday or Thursday, but by the time I got to the hospital they
had scheduled it for today because of surgeon and OR schedules. Luckily Dad was
there when I got to the hospital. We were both there to talk to his doctors and
nurses. Rees’ main doctor this week is very conservative and never lets you get
your hopes up. So when she seemed upbeat and positive about the surgery, it
helped relieve our fears. Right before the surgery at the time parents sign all of the
consent forms, the eye doctor went through all of the details of the surgery, including
the risks, which are very hard to hear.
This is even more complicated to try to explain than his belly, so here goes….The
blood vessels in the eyes start forming at 16 weeks gestation and are fully formed by
the end of gestation at 40 weeks. If babies come early, they are exposed to much
higher oxygen levels than if they had stayed in mom’s tummy getting their oxygen
from the placenta. This higher amount of oxygen confuses the signal in the eye that
tells the blood vessels to keep growing. Since Rees was born at 23 weeks, we were
told early on that there was 99% chance he would need surgery. During the
procedure the doctor zaps a laser around the very outside of the retina, all 360
degrees, to stop the signal that is telling his blood vessels to stop growing. This will
effect his peripheral vision, but he still has a chance for 20/20 vision (if he takes after
dad). New healthy blood vessels should grow to replace the immature vessels,
which in Rees’ case were also thick and starting to curl (called plus disease).
The surgery took 45 minutes per eye and went very well with no complications, but
we won’t know if it did the trick for several weeks/months. A small percentage of
babies who undergo this surgery require further surgeries, and a small percentage
of those babies could loose their vision completely. So we will be praying hard that
his pretty eyes will be able to see all of the beautiful things in this world.
Rees did very well though it all. He got a large dose of pain medicine and paralyzing
medicine for the procedure, which has not fully worn off yet. His is already back to
his pre-surgery ventilator settings. What a tough guy.
Yesterday and today he got his vaccinations—yes, even babies who come 4 months
early get their immunizations at 2 months. Tomorrow the only thing planned is rest.
1/15/2007 Evening Report
Rees had a very busy day today! He went on his first roadtrip outside the NICU.
Since he is such a big boy he was stable enough to go downstairs for his x-ray
study. They put dye into his hiney to see if he has any strictures in his large
intestine. The results came back tonight with great news: no strictures. The odd
thing is that instead of the dye returning back down the path that it was put in, the
dye is coming out of his abdominal drain site. His doctor said that this isn’t good or
bad, just interesting.
In the next few days they will follow up with a GI dye study to follow the path from the
stomach to the intestines. If no strictures are found, which seems like that will be
the case, he will probably need surgery to close off his homemade ostomy, but it
may not be as radical as first thought.
Last night Dad said he thought Rees’ eyes were now brown. I didn’t think he could
really tell, but today when the lights were on bright, which he usually hates, Rees had
his eyes open wide and they definitely looked brown in the light.
Rees also had another graduation. He is now in newborn diapers. His preemie size
diapers were fitting nice and snug, but were also not holding all of the output. His
new diaper looks enormous next to his first diaper that, when folded, was the size of
a deck of cards.
1/14/2007 Evening Report
The runners had a successful half marathon. Mark and I found them in the crowd and
cheered as they zoomed by. We cheered on all of the Team in Training runners who
could be identified by their purple singlet (fancy term for their running top—not the same
as a baby onesie).
Rees has a big week this week. They stopped his feeding today because since he was
reintroduced to food, he has not passed any through. Tomorrow he will have a dye x-ray
study from the bottom up to try to identify any strictures (severe narrowing or
blockages) in the intestines. If a stricture is found, he may have surgery very soon to
repair the funny spots in his intestines. He his much bigger now, so surgery is much
safer than when the problem appeared six weeks ago.
Why would they prefer to do surgery soon than later? If he doesn’t poop, he can’t have
formula in his tummy. If he does get formula in his tummy, he is at risk of developing
liver problems from the potent iv nutrition.
Please pray for our little angel’s belly this week….and also for mom and dad. We are
very nervous waiting for the tests and results.
1/13/2007 Amy’s 1st Marathon
Tomorrow is my first marathon! Although I am far from being in marathon shape, my
awesome Aunt Cynthia (Cindy) is running the Houston Marathon in my honor. Soon after
I was diagnosed with CML, she joined the Leukemia and Lymphoma Society’s “Team in
Training.” She is running the half marathon tomorrow. I am so proud of her for tackling
such a challenge. My Uncle Bill also caught marathon fever. Good luck to you both in
the big race. Tonight they came over for a carbo-load meal before the big day.
If you would like to join the “Team” through a small donation, click here.
The LLS does a wonderful job funding research and helping families with expenses
during treatment.
As for our pregnancy/leukemia/preemie triathlon, our little Olympian is back on his
formula with no problems. This will hopefully lead to getting off of the iv nutrition and
helping his liver function. Today Rees is also off his antibiotics, so mom has been very
nervous for these two big events to happen at once, but so far so good. Tomorrow is
his last day on the antifungal medicine for the yeast infection in his urine. He is also
down to 25% oxygen on his ventilator (room air is 21%) which is a great accomplishment.
1/12/2007 Evening Update
Rees had a good day today. The doctor doubled Rees’ Pedialyte because he is doing so
well getting it down. He graduated to the next size pacifer. We love it when he
outgrows something! He likes this one much better, although he seems to prefer
sucking on his breathing tube.
His eyebrows have reappeared—this time they are blonde. I guess he only wanted to
take after mom for a little while. (They disappeared around Christmas when his dry skin
fell off after he slimmed down from being very swollen.)
1/11/2007 Evening Update
This morning Rees was very calm after his dramatic evening. He was very still and kept
his little eyes wide open for the longest I’ve ever seen. I wonder what he can see now. I
tried not to blink because I wanted to gaze in his little eyes for as long as possible.
The big step for the day was that he is slowly starting back his feeding. He is now
getting Pedialyte every three hours. He is doing well digesting it and this evening it
looked like the processed liquid was going out his drain site.
This afternoon however, he was back to his squirmy self with the attitude. His nurse
told me I should buy Rees some mittens so it would be harder to grab his tubes. At the
shop, the smallest mittens looked so tiny next to all of the other sizes that I thought they
might be too small for Rees. I didn’t open the package incase I needed to return them.
Oh no--he still has plenty of growing room. He hated them so much I didn’t make him
wear them.
1/10/2007 Evening Update
The doctors mapped out a detailed, multiple-step process to get Rees ready for cpap
(continuous positive air pressure) on Friday. Rees, not being one to wait for anyone else’
s plans, extubated himself late this afternoon. He had a couple of good hours on cpap
until it got really hectic in his room. He hates noise and light and was too irritated to
continue. When the doctor put his breathing tube back in she said his trachea was
quite inflamed making it a little harder to breath. Rees will receive a few doses of
steroids that will help reduce the swelling in his trachea and make it easier to breath on
his next cpap attempt. Of course we don’t know when that will be, but we hope it is
planned with his nurses pulling out his breathing tube.
Rees has a new roommate a 23-week twin. She and her sister are doing well. We were
so happy we were able to introduce her parents to Rees. Seeing his chubby double chin
made them smile. We know how meeting other babies who have been through similar
situations can help you through the scariest times.
1/9/2007 Evening Update
Today Rees did a little test to see if he might me ready for cpap (the step between
ventilator and breathing on your own). He still has in his breathing tube, but for 15
minutes they turned the ventilator to cpap settings, which is much less breathing
support than his normal ventilator settings. He did great. It won’t be too long until we try
cpap again. Ideally he will get steroids 24 hours before the cpap. The steroids will help
his trachea, which probably needs a boost after being irritated by the breathing tube for
so long.
He also got a good report from the eye doctor that he has no problems. He said there is
a 95% chance that Rees develop ROP and will need the surgery (correcting blood
vessels in the eyes that do not develop correctly in preemies). However, we think that if
anyone can beat the odds, it will be our tough angel Rees.
Rees has two friends who we miss that are now at Texas Children’s: Adam (Grantley’s
twin) and Cooper (Kayla’s twin). We have been praying for them so that they will be able
to go home soon and be reunited with their brother and sister soon.
1/8/2007 Evening Update
When I called to check on Rees at 4:30 this morning, I got very exciting news. The nurse
just weighed Rees and he tipped the scale at 4 pounds, 10 ounces. Last week he was
barely over 4 pounds, but he was so swollen. He still has edema now, but not 10
ounces, so we are safe in saying he is over 4 pounds. He is also almost 15 inches long.
He was 11.5 at birth.
Rees wiggled out of his breathing tube again early this morning. The excitement must
have worn him out because he slept most of the day.
It looks like his urine is now clear of infection. The redness in his belly is almost
undetectable. The doctors are planning on continuing his antibiotics for one more
week. Then, the plan is to do another x-ray study of his belly and if all goes well, Rees
will get to start feeding again. His iv nutrition is obviously helping him grow into a
chubby fellow, but we need to get food in his tummy to make the liver happy, which is
working overtime while on the iv nutrition.
1/7/2007 Evening Update
About a month after Rees was born, we got a letter in the mail from the health
department saying that a blood test indicated he had a problem with his thyroid, which
could lead to all types of severe problems including mental retardation. When I brought
it to the hospital they said it was a routine test done at birth, but not to worry because
thyroid function does not start until week 34 of gestation. Preemie orientation should
include a note to disregard scary thyroid letters that come in the mail.
Today, the endocrinologist came and said that Rees’ thyroid is now functioning in the
normal range. Yippee.
We are now on a standing order for one holding a day with the option to do skin-to-skin.
Today was mommy’s turn. I could feel little breaths coming from his nose. Amazing.
Rees also got to hang out with his Pop Pop this morning (Texas grandpa).
1/6/2007 Evening Update
The only big change to report on today is that Rees has developed quite an attitude. He
doesn’t like to be messed with—unless he is getting a bath, which he loves. Any other
time his nurses tend to him, even if it is just to take his temp (underarm method only), he
throws up his arms, pulls back his head, turns red and drops his oxygen level. We told
him he really needs to chill out and relax.
The nurses do say feisty babies tend to do better than docile babies.
1/5/2007 Evening Update
We were having an uneventful, restful day. Rees was on his belly, which his surgeon
thinks is best for his troubled tummy, but then he extubated himself. Instead of pulling
out the tube with his hand, like the last time, he did a push up, picked up his head and
turned his head to the other side. I had no idea he had that much strength.
Rees is doing much better from his latest infection and tummy problems. The doctors
are hoping that next week is his last week of antibiotics for this round and that soon
after that when his swelling goes down we can start working on graduating from the
ventilator to CPAP.
I finally got to meet Eli and Bennett’s grandmother who has CML. She is an amazing lady
with an inspiring, positive outlook. She loved meeting Rees the miracle baby.
1/4/2007 Evening Update
Rees made his dad very proud today. He won his first tee tee contest—he squirted his
nurse square in the center of her scrubs top when she was changing his diaper. She
had to change clothes and clean her badge. Good thing she loves him so much.
Good tummy news today. Rees continues to keep his options open: today he had poop
from his drain site in his tummy and from his hiney. The hiney was very good news.
They thought his intestines were completely blocked, but it seems when they cleaned
out his drain site yesterday, it helped things move along inside the intestines as well.
Daddy got his turn to hold him skin-to-skin tonight. Watching daddy hold Reesy is the
second best thing to holding him myself.
1/3/2007 Happy Birthday Mom! Evening Update
While pregnant and going through my treatments, the reports and introductions to the
groups of doctors coming to see me started with “32 year-old female, pregnant with
CML.” Then, I wondered if they were going to change my age on all of the reports after
my birthday—but now everything has changed. Today I am “33 year-old female, gravida
1 para 1, CML in hematologic remission.” Gravida 1 para 1 is medical terms for 1
pregnancy and 1 living child—wonderful labels.
Speaking of my beautiful living child, we had an up and down day, but ended on a high
note. They switched all of his antibiotics for his infection this morning because he has
not improved very much over the last few days. After the doctors poked on his tummy
so much today, Rees gave me a huge poopy for my birthday! It was from his drain site in
his belly and not his hiney, but any exit site is fine with his doctors. This really helped
his tummy to do better and the surgeon thinks we won’t have to wait as long for the
surgery to permanently fix him up. He is thinking 4-6 weeks instead of 8 or more
weeks.
Rees had two special visitors today: LuLu and Papa Joe, his great-grandparents. It was
their first time to see him since early November, so they were shocked at how big he
has gotten. Rees wanted me to tell Aunt Petey thank you for driving them to Houston
and that he can’t wait to meet her too.
My birthday present from Rees’ doctors was a nice, long skin-to-skin hold tonight after
the busy day. Rees and I both loved it—it has been several days since our last holding.
1/3/2007 Happy Birthday Amy! Morning Report
We plan to have a birthday lunch with Amy's grandparents and aunt Petey. They are
visiting from Bridge City, Texas. Tonight we have a NICU parents class during the
evening break.
Rees' nurse said that he had a very good night.
Happy Birthday Rees' Mom!
1/2/2007 Evening Update
Rees had a much better day today. The redness in his belly is now decreasing and his
blood pressure medicine is at the lowest possible dose. The other great news is that
his blood cultures are still clear of infection, so the doctors are very confident that the
fungal infection in his urine did not spread to his blood.
1/1/2007 Happy New Year's Night
Rees had a pretty good day today, which means he chilled out most of the day and there
were no changes. After several not so good days, we think days with no changes are
great.
We told Rees that 2006 was a year of adventures and milestones for mom and dad and
that we accomplished many things that not many people can do in less that a year:
travel to Egypt, celebrate 1st wedding anniversary, try to get pregnant, get pregnant, get
cancer, have a baby and go into remission (level 1). Whew…it is still hard to believe.
We hope our big milestones in 2007 are bring Rees home from the hospital, celebrate
2nd wedding anniversary, go into complete remission (level 3), and celebrate Rees’ 1st
birthday.
Last night Mark and I went to eat dinner with Rees’ friends Ellie and Bennett’s parents
(like the majority of Rees’ friends, they are twins). We mostly talk about the little ones,
but I asked the mom where she grew up. She said she grew up in the Midwest, but they
moved to Houston when she was in high school because her mom had cancer. I
remember seeing her mom one day, so I asked if she was ok now. She said yes she is
now doing great. I asked what kind of cancer she had, and she replied that it was a very
rare form of cancer that not many people had heard of called CML. I almost fell over.
After I told her our adventure story, she said that when diagnosed 12 years ago the
doctors told her mom she had about 3 months to live, but she fought her way through
several different meds that helped her until the miracle pill was available. She was in
the original Gleevec studies. Tomorrow I get to meet her. I know I am going to burst into
tears (like I am right know thinking about it) to meet someone who helped pave the way
for me to have a healthy life.
Rees also had surprise visitors to the hospital tonight--Dick and Jean, friends of his
Indiana grandparents. They brought him a travel bed, so he'd be ready for his first trip to
Indiana as soon as he gets his walking papers.
Happy and healthy 2007 to you all, Amy, Mark & Rees
1/1/2007 Happy New Year! (morning)
Rees is celebrating the New Year with his nurses, doctors and respiratory therapists.
They are having a potluck lunch and Rees volunteered to provide "Rees' Famous Roast
Pork Tenderloin." Rees will continue with his diet of TPN and lipids (intravenous
substances that substitute for milk) but hopefully he will get a whiff of the feast.
Mom and Dad will go to their friend's Ruth house this afternoon. Every New Years Day
she cooks up lots of black eyed peas and invites her friends over to chow down.
Supposedly, eating black eyed peas will bring one luck in the New Year.
Dad had never heard of this tradition growing up in the Midwest but it seems to be the
rage down here in Texas.
| LoneStarPotts |
Kaitlin with her naked boyfriend!
Romannee teaches Rees Chinese!
More chubby cheeks.
Tired of the CPAP!
Big yawn between cpap & cannula.
Rees must know it will be no sweat!
Rees must know it will be no sweat!
Just enjoying nasal cannula!
My very first outfit!
Dad likes to clean the gunk out of
my mouth.
my mouth.
Mom had the charge nurse help
take my footprint.
take my footprint.
Since I can see shapes I
am very curious.
am very curious.
| my girlfriends are NICU nurses |
Check out my latest toy - a pacifier!
Getting ready for my first road trip -
down to the Radiology department
on the first floor.
down to the Radiology department
on the first floor.
On my way!
I've grown - that's mommy's hand.
Dad likes to clean the gunk out of
my mouth.
my mouth.
Mom had the charge nurse help
take my footprint.
take my footprint.
Mom gave me some mittens. They
are to keep me from pulling my
breathing tube out.
are to keep me from pulling my
breathing tube out.
Since I can see shapes I
am very curious.
am very curious.
Mom helps with my pacifier.
When mom and dad look close
they can see my eyebrows!
they can see my eyebrows!
These cheekpads will come off as
soon as I start C-PAP.
soon as I start C-PAP.
Go TEAM! Go Aunt Cynthia!
My eyes are brown.
Rees is a big supporter of
Team In Training!
Team In Training!