| LoneStarPotts |
December 2006 - Month 2 in the NICU
12/31/2006 New Year's Eve Afternoon Update
Better news! The doctors preformed a stomach ultrasound today and did not
find any blockage in Rees' stomach. That means that they will treat the
infection with antibiotics. If blockage or a cyst had been found the surgeon
would have operated this afternoon to relieve the pressure.
Tonight mom and dad plan to have dinner with another NICU couple. We will
ring in the New Year with Rees in the NICU.
Wish us lots of luck in 2007! With Amy in remission and Rees doing so well we
are confident that it will be a very good year.
Happy New Year to all! We could not have gotten through 2006 without the
support of our families, doctors and nurses and those that think and pray for
us.
12/31/2006 New Year's Eve Morning Update
Rees is back to some of his old problems.
The NICU pod that Rees lives in was full of doctors this morning - two infectious
disease doctors, his surgeon and two of his neonatal doctors. The collection
of doctors think that Rees has another infection in his belly. Everyone hopes
that antibiotics will do the trick. If not, he may have to have another more
targeted stomach surgery. One way or the other, Rees will not be able to feed
for a couple of months and there is an almost certain chance that he will have
stomach surgery at the end of February.
The good news is that the rest of his body continues to grow and thrive. We
hope that Rees is able to progress from the ventilator to the C-PAP in the next
couple of weeks.
12/30/2006 Happy 2 Month Birthday Rees
What a difference a day of antibiotics and brilliant doctors and nurses make.
Rees is back to his old self. Yesterday, he was maxed out on blood pressure
medicine and now is on the lowest dose, was not breathing any on his own and
now is back to taking lots of breaths on his own in addition to the ventilator,
was not moving or opening his eyes and now watching everyone who comes to
visit him and squirming around.
So far the blood cultures are showing no infections. It looks like there is no
new infection in his lungs. Since his lungs are doing so well today, the doctors
think that what showed up in the culture was actually the original pneumonia
from over a month ago. Hopefully this little setback doesn’t push him too far
back since he was making such progress in eating and lowering his ventilator
settings.
He had a huge amount of poop (fully digested formula) come out of his former
drain site today, which means his homemade ostomy is working well and that
he is digesting his food. This also means he will probably need surgery at the
end of January to repair his intestines. This is a pretty routine surgery for
preemies, so we aren’t too worried.
Since mommy really needed a pick-me-up after yesterday, his nurses gave her
a special treat: a picture of Rees without tape on his face. When they change
the tape, they usually do one side at a time, but today Rees was doing well and
they took the tape off of both sides for a glamour shot. It is so good to see his
beautiful chubby checks for the first time.
12/30/2006 Early Morning Update
Rees is starting to feel better, so the antibiotics are kicking in. He is keeping
his eyes open and moving around, and probably realizing he now has annoying
ivs and monitors on all four limbs. So far the cultures from his blood have not
shown any growth, They will continue watching these cultures for several
days.
12/29/2006 Evening Update
Rees didn’t have a very good day. They stabilized his blood pressure with
medication, adjusted his ventilator to help him out a bit more, and stopped his
feedings. So far the doctors have identified two infections: a bacteria in his
lungs and a fungus in his urine. We are still waiting on the cultures from his
blood—hopefully his blood is clear of infection, a fungal infection in the blood is
much more serious than a bacterial infection.
Now that he has grown so much, we are hoping that he will be able to get
through this round of infections a little easier than the last one.
12/29/2006 Morning Prayer for Rees
The doctor called us early this morning to tell us that they suspect Rees has
another infection because of low blood pressure and he isn't acting like
himself. They have started general antibiotics and are running tests (blood
cultures, spinal tap, etc). We are so scared that his central line may be in
danger. Please say a prayer that the doctors will find out quickly what is wrong
and are able to treat.
We will keep you posted, love, Amy
12/28/2006 Evening Update
Rees had another very good day today. Once again, Mom and Dad are proud to
report that Rees pooped! Yet another indication that his tummy is healing and
that he may avoid additional surgery.
Mom held him kangaroo style this evening. Both had a very good time.
His doctors continue to tweak his ventilator settings. We are keeping our
fingers crossed and hoping that he will get off the ventilator soon.
12/27/2006 Evening Update
Today Ya Ya (Waco grandma) had her turn at holding her little angel. Both had
a wonderful time. Mom has spent time the last two days giving Rees a
manicure. His fingernails had gotten equivalently longer than mine! It took me
a few days to build up courage. This is a job that the nurses won’t do. They
said I could use clippers, but I opted for the file.
Rees is officially past the 3 lb mark at 3 lbs 2.3 oz.
Rees’ best friend Malik and former roommate, who was about the same size
as Rees when born, went home on Friday and is doing great. Malik was born
about two months before Rees and his parents were the best NICU mentors
and sources of inspiration for us, since Malik went through many of the same
trials as Rees. Knowing it was possible to overcome some of the difficult
procedures and health issues eased our fears and made us better
cheerleaders for Rees. Malik, we are so proud of you and can’t wait until Rees
can come over and play.
12/26/2006 Evening Update
Rees had a very good day today. His favorite moment of the day was being held
by Pop Pop (Waco grandpa) for the first time. Although he was very nervous at
first, grandpa settled in and soon Rees was serenaded his first Beatles tunes.
12/25/2006 Very Merry Christmas
We had a great Christmas. After helping Rees open his presents, we went to
church. Father Bill said that on Christmas Eve he mentioned Rees in his
homily---that when you are with Rees, you could feel God’s presence. What a
special angel we have.
Rees caused quite a stir in the NICU today, not because he was causing
problems, but because everyone was flocking to see his Christmas outfit. He
had red plaid “pants” that matched Daddy and the other Potts men. Their
couture appearance was the hot topic of the day. (Pictures to be posted soon.)
Today Rees really pigged out at his Christmas feast. They almost doubled his
feedings and he is doing very well. This increase in food was ordered after his
surgeon removed his drain from his tummy! (It came out so easily that Rees
could have done it himself if he grabbed it.) Yippee, his tummy looks and is
doing so well. The surgeon said in the next couple of weeks Rees will let us
know what course of action will be needed—there is a chance now that he may
not need the big intestine surgery.
To top off the wonderful day, Daddy held Rees skin-to-skin (the kangaroo
method).
Hopefully Rees is now settling down to a Silent Night. Merry Christmas to you
all.
12/24/2006 Kangaroo Christmas
I told Rees this morning that all I wanted for Christmas was for him to poop and
his goal was to reach 3 lbs by 2007. But I received a more unexpected gift this
morning—I got to hold him skin-to-skin on my chest. An indescribably amazing
feeling. This skin-to-skin bonding for preemies is called “kangarooing,” since
kangaroos give birth to “preemie” joeys who must incubate in the pouch
before they are ready for the real world. The method originated in Bogota out
of necessity at a hospital who lacked enough incubators—the babies thrived
with the increased loving contact.
This morning Rees had lots of special visitors. First were his Waco
grandparents. Grandma, aka Ya Ya, had not seen him since Thanksgiving
because she came down with mono. Her eyes filled with tears when she saw
how much he had grown and how much healthier he is. He also had a surprise
visitor, not a surprise to Rees, but a big Christmas surprise for Aunt Carrie.
She was thrilled to finally meet Rees in person. She even got to help feed him.
This evening Mark and I went to tuck Rees in for bed and make sure he was
asleep before Santa came. Then I got my number one gift: he just had a tiny
poop. Over the last few days they have increased his feeds, but had nothing
exit his drains or hiney. Then our second present: he weighs 2 lbs 15.3 oz.,
almost 3 lbs.
Merry Christmas Eve!
12/23/2006 Evening Update
The large incision on Rees’ belly looks so good that today he got some tummy
time. He loved the new position. The healing of the incision is great news
because Rees’ surgeon said that these type of wounds heal from the inside out
and that when the incision is healed on the outside it is a good indication that
things are looking very well on the inside (the site of his healed perforated
intestine).
Love, Amy & Mark & Rees
12/22/2006 Evening Update
Tonight we walked in and Rees had fancy sheets on his bed. One of his sweet
nurses bought him a navy blanket with white snowflakes. It looks much more
cozy than the standard hospital-issue blankets. We are so blessed to have
nurses who care so much for Reesy.
At midnight Rees receives his last dose of the 21-day antibiotic treatment for
his last infection. We are a little nervous because it was nice not having to
worry about new infections for a while. But the benefits are that the good
bacterias in his body will have a chance to build back up and long-term use of
antibiotics in preemies can make the bone marrow lazy. Please say an extra
prayer to keep infections away. We pray that we stay on the upward slope.
One of Rees’ friends Addison got to go home today. She is a special friend
because she was also born at 1 lb. 4 oz. We are very excited and proud of her.
She is a great inspiration for us.
Many of you know I had horrible itching attacks while I was pregnant. They had
become less intense, but were still painful and annoying. The two original
culprits were pregnancy and fluctuating blood counts. Now that both are
eliminated, my hematologist sent me to an allergist. Problem solved! It is a
form of hives induced by temperature changes and contact (not allergies), he
gave me some medicines to try and I am already feeling better. What a relief.
The doctor said it is not stress induced, but stress can amplify the episodes.
12/21/2006 Evening Update
Rees and his dad had a great time last night! Mark was able to hold the little
man for over an hour. Usually the nurse swaddles Rees in a blanket and even
though we can feel him there is lots of material in between. Last night was
extra special because the nurse let Mark pick Rees up while she slid the
swaddling blanket underneath him. He is getting to be a pretty heavy guy!
Today the doctors and nurses concentrated on getting the breathing tube and
ventilator settings perfect with his new tube.
All of the nurses and doctors are so proud of how good Rees looks. He
officially has a little baby fat. He now tips the scales at 2 lbs. 10 oz.
12/20/2006 Early Evening Update
Rees was a very bad boy today - he pulled out his breathing tube! If you do it in
the hospital they call it extubating. The good news is that they replaced his old
breathing tube with a new one that is bigger. This is good because his old one
was too small and the respirator had to adjust for air that was escaping. Now
that the respirator is getting more accurate readings. The doctors are very
impressed with his lung strength. Rees is breathing 50% on his own.
The other pile of good news is that he pooped! This means that his entire
digestive system is working and getting good exercise. So all three exit sites
are working (2 drains in his tummy & his hinney). Yes, Amy and I get very, very
excited about poop and pee these days.
Off to the hospital - it's Dad's turn to hold the Rees man.
12/19/2006 Evening Update
Rees had a good day today. After mommy held him, his doctor changed his
feeding from a continuous flow to one large feed every three hours. She said
that baby’s with more developed tummies do better in intervals. I couldn’t
believe that any of Rees’ parts could be described as “more developed.” Well,
he proved to be more developed—he is digesting much more formula now.
Rees' neighbor had a successful traceotomy this morning. Although this is a
scary procedure for her family, they enjoyed seeing her sweet face without any
tape or tubes. She will hopefully outgrow the need for the traceotomy in a
couple of years. The sad news for us is that they moved her to a different pod
after the surgery. We miss her already.
12/18/2006 Evening Update - Remission for
Amy!!!
Today Amy had her second visit with Dr. Ramshesh (her hematologist) since
she began taking Gleevec, the CML miracle pill. During that time, Amy and I
had kind of forgotten about CML and it wasn't until last Friday that we started to
get anxious about the appointment.
Most of the visit we spent time showing pictures to and telling Dr. Ramshesh
everything about the Reeser! Near the end of our visit Dr. Ramshesh told Amy
that everything is going very well. She casually mentioned that Amy is in
hematologic remission! What a thrill! What a tremendous weight that has been
lifted off of our shoulders! Amy's face really lit up.
Hematologic remission is the normalization of the white blood cell counts in the
blood. This means that Amy has taken her first step towards complete
remission. Now there are 2 more remission stages to go.
Rees had another exciting yet stable day. Mom was able to hold him and he
told me what he wanted to get his mom for Christmas!
Please also say a prayer for Rees' neighbor Evelyn. She is having surgery
tomorrow morning. She is a really sweet and tough girl who has been through
a tough road. We feel like she is family now. She turns her head our way
whenever she hears Amy singing to Rees.
12/17/2006 Evening Update
Daddy’s long wait is now over. He got his turn to hold Rees. It was so sweet to
see my big angel holding my tiny angel. The doctor said we can now have one
holding a day. Hopefully we won’t get too competitive---I have envisions of
racing each other to the hospital.
Rees had two surprise visitors today: Pop Pop (aka Texas grandfather) and
one of mom’s nurses from her bed-rest days.
We got good news today about Rees’ tummy. It looks like he is starting to
digest his food. He also was weaned off the nitric oxide, which was the
additive in his respirator. Now he is only on oxygen.
12/16/2006 Evening Update: Happy
Anniversary Aunt Carrie and Uncle Michael!
Early this morning Amy called the night nurse to check up on our little fellow.
When the nurse told Amy that they had removed Rees's ART line (similar to an
IV but placed in an artery rather than a vein - typically, ART lines last lots longer
than IV's - 5 weeks for Rees) she began to get excited! The ART line has been
one of the things that has kept us from holding our little angel and all of the
sudden we knew it has been removed.
After a quick donut breakfast we raced over to the hospital and found out that
Amy's hunch was correct. She was able to hold Rees today for over an hour! It
was a thrill for Mommy and Dad. The best news is that Rees's oxygen
saturation reading (how we can tell if he is happy or not) shot up to 100% which
means he thrived in Amy's arms.
Late in the day we went for a visit and noticed he has added to his wardrobe -
new shoes. One of the volunteers knitted little blue booties for him. They match
the cute blue hat his neighbor's mother made for him.
No word yet on when Dad will get to hold the Reeser.
12/15/2006 Evening Update
Rees had a good day. They are still feeding him. He was very active all day:
waving his arms, pushing off his hat, stretching, squirming. He even pushed
both legs so hard against his snuggly bed that he picked his bottom up a little
off the bed. His nurses really want him to rest more and do less pilates and
aerobics.
Rees has been sucking very hard on his breathing tube, which his doctor said
is a sign of a healthy happy preemie, so today his nurse gave him a miniature
preemie pacifier. He could barely get very the tip in his mouth to lick and feel
with his lips—what great fun. Sucking is a great exercise. It builds up his
check muscles to get him ready for a bottle.
12/14/2006 Evening Update
2 pounds 5 ounces!
Rees has almost doubled his weight! They finally weighed him today. They
were using a standard growth scale to estimate his weight and they had him at
950 grams. He weighed in today at 1060 grams. We are thrilled that he has
grown so much, especially after being so sick for several weeks.
I’m eating too!
Rees’ surgeon and doctor decided that he could try eating. His x-ray tests
went well: they tracked the die from his stomach to his small intestine, then it
came out his drain. We were hoping it would come out his hiney, but out the
drain was the second best option. Essentially Rees created his own colostomy
from his perforated intestine and as long as the processed food follows this
path and doesn’t escape to the abdominal cavity, he is fine to eat. We still can’t
believe it is OK for him to eat, but we are so happy they can reduce his iv
nutrition. Right now he is getting .8 cc of formula through the feeding tube
every hour. If he is able to tolerate the food, just think how much he’ll grow.
In a couple of months, Rees will have surgery to correct the intestines. He
needs to grow before they attempt this procedure, or they may do more harm
than good to his delicate intestines.
This week Rees’ doctor’s are starting to be much more upbeat when
discussing Rees. They are very thrilled he is doing so well. Rees is definitely
moving in the right direction. We just need to keep him infection free.
12/13/2006 Evening Update
We have a big day on Thursday. The doctor and surgeon decided today that
Rees may be ready to eat! Something they didn’t anticipate happening for at
least another month. Tomorrow they are going to give Rees a preemie-safe
liquid that is similar to barium. They are going to track it throughout the day
with x-rays. If it goes down without a hitch, or leak, Rees may be able to start
on formula again. His current iv nutrition is helping him grow, but it isn’t healthy
for his liver for long periods of time. If they aren’t absolutely sure he can
handle the formula, they will wait. If he is not ready and there is a problem, it
will be an even bigger set back.
Please pray for Rees, his doctors and nurses. They are all working hard.
Rees did have a special visitor today: Santa Claus and Mrs. Claus. This Santa’
s regular gig is being a neonatologist, so he didn’t need NICU procedure
training. His wife was Mrs. Claus. This year Rees got an MP3 player—all the
cool kids are getting them. His nurse suggested we get a tape recorder to
record our voices for him to listen to when he gets fussy when we aren’t there.
Since we don’t have a tape player any more, we went with the more modern
toy, an MP3 player with a voice recorder.
Below is a wonderful prayer a friend sent us last night that is perfect for Rees.
Portion of the prayer called The Breastplate of St. Patrick
(The “me” was changed to “you” for Baby Rees.)
Christ with you, Christ before you, Christ behind you,
Christ in you, Christ beneath you, Christ above you,
Christ on your right, Christ on your left,
Christ when you lie down, Christ when you sit down, Christ when you arise,
Christ in the heart of every man who thinks of you,
Christ in the mouth of everyone who speaks of you,
Christ in every eye that sees you,
Christ in every ear that hears you.
12/12/2006 Evening Update
Rees had a nice quiet day, which is much needed every now and then. He did
have his first eye exam. Although the cause is unknown, many preemies
retinas do not form correctly. Fortunately, at this point, Rees shows no
abnormalities. He will continue to get his eyes checked every few weeks until
he goes home.
The doctors are “thrilled” with how well Rees is doing and how far he has
come. The major concern right now is his belly. While that needs several
weeks to heal and grow before any further steps can be taken, the doctors feel
he is ready to really work on his breathing. Rees may try cpap again at the end
of the week.
Of course, an ongoing concern is keeping him infection free. Right now we are
all clear and we are so thankful.
12/11/2006 Evening Update
Rees is 6 weeks old and he was a mighty big boy today. They took out his
breathing tube and he took breaths by himself for about 10 hours. He was very
mad after the procedure. He was squirming and kicking more than ever and
turned red. He did not like having things shoved up his nose. He settled down a
bit tonight, probably because he wore himself out. At midnight he decided to
hold his breath, so they decided to put the breathing tube back in. Hopefully
next time, he will be ready to keep the breathing up by himself for much longer.
The graduation to cpap today was quite a shock to us and to his nurses and
other doctors. When the doctor told me this morning of the plans I almost fell
over because we didn't think this would be a possibility for several more days.
She didn’t want to miss this opportunity to try it out while he was doing so well.
It is important for babies to try cpap, even if it is for a short time, because it
gives their lungs a break from the pressure of the ventilator, which causes
short-term damages the lungs, and lets them practice really using their lungs.
A few weeks ago when Rees was sick and extremely swollen, they gave him
heavy doses of medicine to paralyze him. One of the reasons for this choice
was that if he pulled his breathing tube out, which many active babies do, they
may not be able to get a tube back in. We are so thankful to be past that scary
point and back on track and progressing with his respiration.
12/11/2006 Morning Update
Rees has grown! Yesterday Rees was a little mad because it was very noisy,
so we couldn’t play very much. I sang to him and watched him. All of a sudden
I realized his nose was much bigger than before. His nostrils are perfectly
round and they use to be so tiny that spaghetti wouldn’t have fit. Now I think we
could slide an overly cooked piece of spaghetti in his nose with plenty of room.
His hands are bigger too.
Almost all of his edema is gone from when he was sick, so we can finally see
what is real growth. He hasn’t been weighed in almost a month, so we are
anxious to see how heavy the little guy is now.
Daddy said Rees was a little sleepy this morning—he only opened his eyes to
say hello.
12/9/2006 Evening Update
Rees is having a very good weekend thus far! He has spent most of his time
sleeping like the little angle that he is.
We are optimistic that Rees will be able to get off of his ventilator and begin
breathing from a C-PAP device within a week. Another good progress note is
that he had tiny poopy diaper today--an awesome sign that his plumbing is still
working after the traumatic week his belly has had. Maybe he will get to eat
sooner than expected. The surgeons noted at the beginning of the week that it
may be 5-6 weeks from now.
Rees has perfected the art of waving to people with his feet when they tell him
hello. Today he greeted his surgeons with a shake of his right foot! They were
very impressed.
We hope for more of the same stable progress tomorrow.
Love,
Amy, Mark and Rees
12/8/2006 Morning Update
Although Rees has had a set-back this week with his belly infection. We are
very relieved that the cultures from the blood stayed infection free. The
doctors are also very glad that Rees stayed stable with his respiration and
blood pressure while he’s been sick. Many times when preemies are sick they
need more help with the respirator and blood pressure medicine, and it takes
awhile to get back to their pre-sick levels. Rees has done so well they lowered
some of his nitric oxide (an additive that helps absorb more oxygen into the
blood vessels of the lungs).
Our big prayers for next week is for Rees to continue draining the icky stuff
from his belly, improving on his breathing so it won’t be long until we can try
cpap again and remove his intubation tube, and that the doctors think his
tummy is well enough to start feeding him formula again. Right now Rees is
receiving all of his nutrition through his central line, he’ll start growing much
faster when he is on real food.
Shift change just ended, time to call Rees, Love, Amy & Mark
12/7/2006 Evening Update
Rees looks like he his recovering well from his latest belly infection, although
the specific bacteria is still being identified. The good news is that the
antibiotic cocktail he is on seems to be working and the cultures from his
blood are still clear of infection.
Today when I had my hand cradling Rees’ head I started to feel jerky
movements. When I looked at his chest, it was jerking at the same time. I got
very worried thinking that his ventilator settings might be too strong. Nothing
looked different from my now-pretty-good-ventilator knowledge, so I called the
nurse. She quickly made a diagnosis: hic-ups. Since is vocal cords are still
separated by his breathing tube he couldn’t make the identifiable hic-up sound;
otherwise, mommy may have been able to figure it out on my own.
The day nurse told me that Mark and I could probably hold Rees up over the bed
tonight while the night nurse changed his bed. I was so excited. But, when we
walked in this evening, his sheets were already changed. I was trying really
hard not to start crying in disappointment because I didn’t want to hurt our
sweet nurse’s feelings. (Yesterday she fought back tears telling us how
scared she was when Rees’ tummy started doing worse.) But, then she said
his bed was already changed, so that we could hold him for a longer amount of
time. Rees stayed in his snuggly (soft, swaddling bed) and both mommy and
daddy held him close up to our body. I can’t describe how wonderful it felt.
Rees loved it too! The nurses and doctors measure how happy Rees is by his
oxygen saturation, which is read by a glowing red light on his hand or foot (in
adults on a fingertip). He was 100% the whole time. If Rees gets mad when the
nurses are messing with him, he dips down to the 80s. When he was really
sick, he was mostly in the 70s.
12/6/2006 Afternoon Update
Rees’ belly is a little red and his abdominal incision came open a bit. The
doctors are concerned that he has a new infection. They immediately started
him on several broad-spectrum antibiotics, and because the drains in his belly
are doing their job of draining the icky stuff out, they don’t think he will require
another surgery. They took several cultures and should have an identification
of what is causing the problem tomorrow.
Once again, they caught this very early thanks to his fabulous, caring nurses.
His nurse said that when she came in and told Rees good morning, he didn’t
seem his usually self. She said he opened his eyes to see her, but they weren’t
as perky as usually. She immediately found the doctor to come look at Rees
because she didn’t think he was feeling well. (She hadn’t even looked at his
belly yet!) When the doctor came to look at him they found the irritations on his
belly. How amazing that Rees’ nurses care so much for him and know him so
well that she knew something was wrong before she even examined him.
They are such a blessing to the babies.
I was there when they started the antibiotics and within an hour Rees started
looking around with more interest and squirming around a little more—signs
that he was starting to feel better. Then, all at once his infectious disease
specialist, day doctor, surgeon and pediatrician from Kelsey-Seybold were all
there checking on Rees. Daddy got there just in time so we both got to hear the
reports from each. We are so thankful for such wonderful doctors to look
after our tiny baby.
We are praying that this infection clears quickly and that it doesn’t spread. He
is a tough little angel, but we need him to continue to stay strong.
12/5/2006 Evening Update
Yesterday Aunt Carrie's class asked if a priest could visit Rees. I told her that
the rules were very clear: only parents and grandparents.
But......when I was talking to Rees this morning, someone said "Mrs. Potts."
When I turned around it was Father Bill from Corpus Christi Church who came
to visit me while I was in the hospital. Through my tears, I did manage to take a
few pictures after Father Bill blessed Rees and crossed his little foot with holy
water.
I guess priests are considered "fathers" in the NICU too and that Mrs.
Stratton's class had some pull.
Rees had another good day today. Mommy had a good day too. I even made it
to the museum Christmas party. I had planned to go to a lecture too, but ran
out of steam.
12/4/2006 Evening Update
The infectious disease team from Tx Children’s took Rees off two of his
antibiotics today. He has had clear cultures for 5 days. This is wonderful news
that indicates that his infection has cleared. They will continue checking the
cultures daily for a couple of more weeks. We are cautiously celebrating,
knowing how susceptible to infections preemies are. We praying very hard
that he stays infection free for a substantial amount of time. He can’t afford for
anything to happen to his central line, since he only has one more potential site
and he has at least 3 more months to go in the NICU.
Another sigh of relief; since Rees had gotten sick two weeks ago, they began
doing weekly brain scans to check for brain bleeds, since this can occur while
preemies are very ill. All scans were normal and he has no more scheduled
until a routine scan before his discharge to go home.
Every time we visit Rees, there is an improvement in his edema. We are hoping
all of the swelling is gone by the end of the week.
12/3/2006 Evening Update
Rees had another great day. One of his surgeons came by this morning, just to
visit--a nice change. He is very proud of our tough little guy.
So far, all of the cultures from Rees’ blood and new central line show no signs
of infection. If the cultures are still infection-free by the end of the day Tuesday,
we will officially be in the clear.
Last night Rees got his new Christmas hat that one of the nurses made. It is
very fancy: red with white designs and gold beads. We keep telling Rees that
he is such a big boy; that we don’t know anyone else his age (28 weeks
gestation) that can wear hats. He is just like a college kid with his noisy
roommates that stay up all night. Rees even sends his dirty laundry home for
mom to wash. He has a special soft bed that fits insides his big bed. It is
called a “snuggly.” The snuggly can’t go in the hospital’s big industrial
washers, so one of the chores of NICU mommies is taking home the snugglies
to wash.
12/2/2006 Evening Update
We are happy to report that Rees had an uneventful day. His blood pressure,
heart
rate, oxygen saturation, blood gas, ventilator settings and temperature (the
main numbers that are monitored around the clock) were stable all day.
Big day for Mommy and Daddy: we got to give Rees a kiss on his forehead.
There is nothing like your first kiss!
After much pouting for getting left out yesterday, Daddy got to pick Rees up
today.
12/1/2006 Evening Update - New Central Line
The surgeons returned today and removed the infected central line from Rees’
leg and inserted a new line in one of his jugular veins (safer than it sounds).
The procedure went very well and Rees is recovering nicely and enjoying
kicking up his leg that he wasn’t able to move very well.
Before the surgery, the surgeon told us the two things to pray for: that he could
get the new line in and that it won’t get infected. One prayer answered, one to
go. Please help us with the second and incredibly important prayer request for
Rees.
After the surgery they were fixing up his bed. His doctor was holding him in the
air above the bed while the nurse got his new bedding ready. I told the doctor
that I couldn’t imagine how heavy he must feel. She said to put my hands under
him and see. I didn’t see how I would be able to tell if she was already
supporting his weight, but we always do what the doctor said. I couldn’t
believe it but she pulled her hands away and I held him by myself. I’m still
grinning.
Although Daddy doesn’t feel it is as quite as momentous, he got to do
something probably more people will remember for years to come. He put his
wedding band on Rees’ arm. His hand slid easily through the ring and he his
arm had plenty of room to grow on. A great picture to pull out on Rees’
wedding day when he is a happy grown man.
We are hoping that this coming week is a quiet week of healing for Rees to get
over all of his infections, and that Mommy and Daddy get a little R&R too.
12/31/2006 New Year's Eve Afternoon Update
Better news! The doctors preformed a stomach ultrasound today and did not
find any blockage in Rees' stomach. That means that they will treat the
infection with antibiotics. If blockage or a cyst had been found the surgeon
would have operated this afternoon to relieve the pressure.
Tonight mom and dad plan to have dinner with another NICU couple. We will
ring in the New Year with Rees in the NICU.
Wish us lots of luck in 2007! With Amy in remission and Rees doing so well we
are confident that it will be a very good year.
Happy New Year to all! We could not have gotten through 2006 without the
support of our families, doctors and nurses and those that think and pray for
us.
12/31/2006 New Year's Eve Morning Update
Rees is back to some of his old problems.
The NICU pod that Rees lives in was full of doctors this morning - two infectious
disease doctors, his surgeon and two of his neonatal doctors. The collection
of doctors think that Rees has another infection in his belly. Everyone hopes
that antibiotics will do the trick. If not, he may have to have another more
targeted stomach surgery. One way or the other, Rees will not be able to feed
for a couple of months and there is an almost certain chance that he will have
stomach surgery at the end of February.
The good news is that the rest of his body continues to grow and thrive. We
hope that Rees is able to progress from the ventilator to the C-PAP in the next
couple of weeks.
12/30/2006 Happy 2 Month Birthday Rees
What a difference a day of antibiotics and brilliant doctors and nurses make.
Rees is back to his old self. Yesterday, he was maxed out on blood pressure
medicine and now is on the lowest dose, was not breathing any on his own and
now is back to taking lots of breaths on his own in addition to the ventilator,
was not moving or opening his eyes and now watching everyone who comes to
visit him and squirming around.
So far the blood cultures are showing no infections. It looks like there is no
new infection in his lungs. Since his lungs are doing so well today, the doctors
think that what showed up in the culture was actually the original pneumonia
from over a month ago. Hopefully this little setback doesn’t push him too far
back since he was making such progress in eating and lowering his ventilator
settings.
He had a huge amount of poop (fully digested formula) come out of his former
drain site today, which means his homemade ostomy is working well and that
he is digesting his food. This also means he will probably need surgery at the
end of January to repair his intestines. This is a pretty routine surgery for
preemies, so we aren’t too worried.
Since mommy really needed a pick-me-up after yesterday, his nurses gave her
a special treat: a picture of Rees without tape on his face. When they change
the tape, they usually do one side at a time, but today Rees was doing well and
they took the tape off of both sides for a glamour shot. It is so good to see his
beautiful chubby checks for the first time.
12/30/2006 Early Morning Update
Rees is starting to feel better, so the antibiotics are kicking in. He is keeping
his eyes open and moving around, and probably realizing he now has annoying
ivs and monitors on all four limbs. So far the cultures from his blood have not
shown any growth, They will continue watching these cultures for several
days.
12/29/2006 Evening Update
Rees didn’t have a very good day. They stabilized his blood pressure with
medication, adjusted his ventilator to help him out a bit more, and stopped his
feedings. So far the doctors have identified two infections: a bacteria in his
lungs and a fungus in his urine. We are still waiting on the cultures from his
blood—hopefully his blood is clear of infection, a fungal infection in the blood is
much more serious than a bacterial infection.
Now that he has grown so much, we are hoping that he will be able to get
through this round of infections a little easier than the last one.
12/29/2006 Morning Prayer for Rees
The doctor called us early this morning to tell us that they suspect Rees has
another infection because of low blood pressure and he isn't acting like
himself. They have started general antibiotics and are running tests (blood
cultures, spinal tap, etc). We are so scared that his central line may be in
danger. Please say a prayer that the doctors will find out quickly what is wrong
and are able to treat.
We will keep you posted, love, Amy
12/28/2006 Evening Update
Rees had another very good day today. Once again, Mom and Dad are proud to
report that Rees pooped! Yet another indication that his tummy is healing and
that he may avoid additional surgery.
Mom held him kangaroo style this evening. Both had a very good time.
His doctors continue to tweak his ventilator settings. We are keeping our
fingers crossed and hoping that he will get off the ventilator soon.
12/27/2006 Evening Update
Today Ya Ya (Waco grandma) had her turn at holding her little angel. Both had
a wonderful time. Mom has spent time the last two days giving Rees a
manicure. His fingernails had gotten equivalently longer than mine! It took me
a few days to build up courage. This is a job that the nurses won’t do. They
said I could use clippers, but I opted for the file.
Rees is officially past the 3 lb mark at 3 lbs 2.3 oz.
Rees’ best friend Malik and former roommate, who was about the same size
as Rees when born, went home on Friday and is doing great. Malik was born
about two months before Rees and his parents were the best NICU mentors
and sources of inspiration for us, since Malik went through many of the same
trials as Rees. Knowing it was possible to overcome some of the difficult
procedures and health issues eased our fears and made us better
cheerleaders for Rees. Malik, we are so proud of you and can’t wait until Rees
can come over and play.
12/26/2006 Evening Update
Rees had a very good day today. His favorite moment of the day was being held
by Pop Pop (Waco grandpa) for the first time. Although he was very nervous at
first, grandpa settled in and soon Rees was serenaded his first Beatles tunes.
12/25/2006 Very Merry Christmas
We had a great Christmas. After helping Rees open his presents, we went to
church. Father Bill said that on Christmas Eve he mentioned Rees in his
homily---that when you are with Rees, you could feel God’s presence. What a
special angel we have.
Rees caused quite a stir in the NICU today, not because he was causing
problems, but because everyone was flocking to see his Christmas outfit. He
had red plaid “pants” that matched Daddy and the other Potts men. Their
couture appearance was the hot topic of the day. (Pictures to be posted soon.)
Today Rees really pigged out at his Christmas feast. They almost doubled his
feedings and he is doing very well. This increase in food was ordered after his
surgeon removed his drain from his tummy! (It came out so easily that Rees
could have done it himself if he grabbed it.) Yippee, his tummy looks and is
doing so well. The surgeon said in the next couple of weeks Rees will let us
know what course of action will be needed—there is a chance now that he may
not need the big intestine surgery.
To top off the wonderful day, Daddy held Rees skin-to-skin (the kangaroo
method).
Hopefully Rees is now settling down to a Silent Night. Merry Christmas to you
all.
12/24/2006 Kangaroo Christmas
I told Rees this morning that all I wanted for Christmas was for him to poop and
his goal was to reach 3 lbs by 2007. But I received a more unexpected gift this
morning—I got to hold him skin-to-skin on my chest. An indescribably amazing
feeling. This skin-to-skin bonding for preemies is called “kangarooing,” since
kangaroos give birth to “preemie” joeys who must incubate in the pouch
before they are ready for the real world. The method originated in Bogota out
of necessity at a hospital who lacked enough incubators—the babies thrived
with the increased loving contact.
This morning Rees had lots of special visitors. First were his Waco
grandparents. Grandma, aka Ya Ya, had not seen him since Thanksgiving
because she came down with mono. Her eyes filled with tears when she saw
how much he had grown and how much healthier he is. He also had a surprise
visitor, not a surprise to Rees, but a big Christmas surprise for Aunt Carrie.
She was thrilled to finally meet Rees in person. She even got to help feed him.
This evening Mark and I went to tuck Rees in for bed and make sure he was
asleep before Santa came. Then I got my number one gift: he just had a tiny
poop. Over the last few days they have increased his feeds, but had nothing
exit his drains or hiney. Then our second present: he weighs 2 lbs 15.3 oz.,
almost 3 lbs.
Merry Christmas Eve!
12/23/2006 Evening Update
The large incision on Rees’ belly looks so good that today he got some tummy
time. He loved the new position. The healing of the incision is great news
because Rees’ surgeon said that these type of wounds heal from the inside out
and that when the incision is healed on the outside it is a good indication that
things are looking very well on the inside (the site of his healed perforated
intestine).
Love, Amy & Mark & Rees
12/22/2006 Evening Update
Tonight we walked in and Rees had fancy sheets on his bed. One of his sweet
nurses bought him a navy blanket with white snowflakes. It looks much more
cozy than the standard hospital-issue blankets. We are so blessed to have
nurses who care so much for Reesy.
At midnight Rees receives his last dose of the 21-day antibiotic treatment for
his last infection. We are a little nervous because it was nice not having to
worry about new infections for a while. But the benefits are that the good
bacterias in his body will have a chance to build back up and long-term use of
antibiotics in preemies can make the bone marrow lazy. Please say an extra
prayer to keep infections away. We pray that we stay on the upward slope.
One of Rees’ friends Addison got to go home today. She is a special friend
because she was also born at 1 lb. 4 oz. We are very excited and proud of her.
She is a great inspiration for us.
Many of you know I had horrible itching attacks while I was pregnant. They had
become less intense, but were still painful and annoying. The two original
culprits were pregnancy and fluctuating blood counts. Now that both are
eliminated, my hematologist sent me to an allergist. Problem solved! It is a
form of hives induced by temperature changes and contact (not allergies), he
gave me some medicines to try and I am already feeling better. What a relief.
The doctor said it is not stress induced, but stress can amplify the episodes.
12/21/2006 Evening Update
Rees and his dad had a great time last night! Mark was able to hold the little
man for over an hour. Usually the nurse swaddles Rees in a blanket and even
though we can feel him there is lots of material in between. Last night was
extra special because the nurse let Mark pick Rees up while she slid the
swaddling blanket underneath him. He is getting to be a pretty heavy guy!
Today the doctors and nurses concentrated on getting the breathing tube and
ventilator settings perfect with his new tube.
All of the nurses and doctors are so proud of how good Rees looks. He
officially has a little baby fat. He now tips the scales at 2 lbs. 10 oz.
12/20/2006 Early Evening Update
Rees was a very bad boy today - he pulled out his breathing tube! If you do it in
the hospital they call it extubating. The good news is that they replaced his old
breathing tube with a new one that is bigger. This is good because his old one
was too small and the respirator had to adjust for air that was escaping. Now
that the respirator is getting more accurate readings. The doctors are very
impressed with his lung strength. Rees is breathing 50% on his own.
The other pile of good news is that he pooped! This means that his entire
digestive system is working and getting good exercise. So all three exit sites
are working (2 drains in his tummy & his hinney). Yes, Amy and I get very, very
excited about poop and pee these days.
Off to the hospital - it's Dad's turn to hold the Rees man.
12/19/2006 Evening Update
Rees had a good day today. After mommy held him, his doctor changed his
feeding from a continuous flow to one large feed every three hours. She said
that baby’s with more developed tummies do better in intervals. I couldn’t
believe that any of Rees’ parts could be described as “more developed.” Well,
he proved to be more developed—he is digesting much more formula now.
Rees' neighbor had a successful traceotomy this morning. Although this is a
scary procedure for her family, they enjoyed seeing her sweet face without any
tape or tubes. She will hopefully outgrow the need for the traceotomy in a
couple of years. The sad news for us is that they moved her to a different pod
after the surgery. We miss her already.
12/18/2006 Evening Update - Remission for
Amy!!!
Today Amy had her second visit with Dr. Ramshesh (her hematologist) since
she began taking Gleevec, the CML miracle pill. During that time, Amy and I
had kind of forgotten about CML and it wasn't until last Friday that we started to
get anxious about the appointment.
Most of the visit we spent time showing pictures to and telling Dr. Ramshesh
everything about the Reeser! Near the end of our visit Dr. Ramshesh told Amy
that everything is going very well. She casually mentioned that Amy is in
hematologic remission! What a thrill! What a tremendous weight that has been
lifted off of our shoulders! Amy's face really lit up.
Hematologic remission is the normalization of the white blood cell counts in the
blood. This means that Amy has taken her first step towards complete
remission. Now there are 2 more remission stages to go.
Rees had another exciting yet stable day. Mom was able to hold him and he
told me what he wanted to get his mom for Christmas!
Please also say a prayer for Rees' neighbor Evelyn. She is having surgery
tomorrow morning. She is a really sweet and tough girl who has been through
a tough road. We feel like she is family now. She turns her head our way
whenever she hears Amy singing to Rees.
12/17/2006 Evening Update
Daddy’s long wait is now over. He got his turn to hold Rees. It was so sweet to
see my big angel holding my tiny angel. The doctor said we can now have one
holding a day. Hopefully we won’t get too competitive---I have envisions of
racing each other to the hospital.
Rees had two surprise visitors today: Pop Pop (aka Texas grandfather) and
one of mom’s nurses from her bed-rest days.
We got good news today about Rees’ tummy. It looks like he is starting to
digest his food. He also was weaned off the nitric oxide, which was the
additive in his respirator. Now he is only on oxygen.
12/16/2006 Evening Update: Happy
Anniversary Aunt Carrie and Uncle Michael!
Early this morning Amy called the night nurse to check up on our little fellow.
When the nurse told Amy that they had removed Rees's ART line (similar to an
IV but placed in an artery rather than a vein - typically, ART lines last lots longer
than IV's - 5 weeks for Rees) she began to get excited! The ART line has been
one of the things that has kept us from holding our little angel and all of the
sudden we knew it has been removed.
After a quick donut breakfast we raced over to the hospital and found out that
Amy's hunch was correct. She was able to hold Rees today for over an hour! It
was a thrill for Mommy and Dad. The best news is that Rees's oxygen
saturation reading (how we can tell if he is happy or not) shot up to 100% which
means he thrived in Amy's arms.
Late in the day we went for a visit and noticed he has added to his wardrobe -
new shoes. One of the volunteers knitted little blue booties for him. They match
the cute blue hat his neighbor's mother made for him.
No word yet on when Dad will get to hold the Reeser.
12/15/2006 Evening Update
Rees had a good day. They are still feeding him. He was very active all day:
waving his arms, pushing off his hat, stretching, squirming. He even pushed
both legs so hard against his snuggly bed that he picked his bottom up a little
off the bed. His nurses really want him to rest more and do less pilates and
aerobics.
Rees has been sucking very hard on his breathing tube, which his doctor said
is a sign of a healthy happy preemie, so today his nurse gave him a miniature
preemie pacifier. He could barely get very the tip in his mouth to lick and feel
with his lips—what great fun. Sucking is a great exercise. It builds up his
check muscles to get him ready for a bottle.
12/14/2006 Evening Update
2 pounds 5 ounces!
Rees has almost doubled his weight! They finally weighed him today. They
were using a standard growth scale to estimate his weight and they had him at
950 grams. He weighed in today at 1060 grams. We are thrilled that he has
grown so much, especially after being so sick for several weeks.
I’m eating too!
Rees’ surgeon and doctor decided that he could try eating. His x-ray tests
went well: they tracked the die from his stomach to his small intestine, then it
came out his drain. We were hoping it would come out his hiney, but out the
drain was the second best option. Essentially Rees created his own colostomy
from his perforated intestine and as long as the processed food follows this
path and doesn’t escape to the abdominal cavity, he is fine to eat. We still can’t
believe it is OK for him to eat, but we are so happy they can reduce his iv
nutrition. Right now he is getting .8 cc of formula through the feeding tube
every hour. If he is able to tolerate the food, just think how much he’ll grow.
In a couple of months, Rees will have surgery to correct the intestines. He
needs to grow before they attempt this procedure, or they may do more harm
than good to his delicate intestines.
This week Rees’ doctor’s are starting to be much more upbeat when
discussing Rees. They are very thrilled he is doing so well. Rees is definitely
moving in the right direction. We just need to keep him infection free.
12/13/2006 Evening Update
We have a big day on Thursday. The doctor and surgeon decided today that
Rees may be ready to eat! Something they didn’t anticipate happening for at
least another month. Tomorrow they are going to give Rees a preemie-safe
liquid that is similar to barium. They are going to track it throughout the day
with x-rays. If it goes down without a hitch, or leak, Rees may be able to start
on formula again. His current iv nutrition is helping him grow, but it isn’t healthy
for his liver for long periods of time. If they aren’t absolutely sure he can
handle the formula, they will wait. If he is not ready and there is a problem, it
will be an even bigger set back.
Please pray for Rees, his doctors and nurses. They are all working hard.
Rees did have a special visitor today: Santa Claus and Mrs. Claus. This Santa’
s regular gig is being a neonatologist, so he didn’t need NICU procedure
training. His wife was Mrs. Claus. This year Rees got an MP3 player—all the
cool kids are getting them. His nurse suggested we get a tape recorder to
record our voices for him to listen to when he gets fussy when we aren’t there.
Since we don’t have a tape player any more, we went with the more modern
toy, an MP3 player with a voice recorder.
Below is a wonderful prayer a friend sent us last night that is perfect for Rees.
Portion of the prayer called The Breastplate of St. Patrick
(The “me” was changed to “you” for Baby Rees.)
Christ with you, Christ before you, Christ behind you,
Christ in you, Christ beneath you, Christ above you,
Christ on your right, Christ on your left,
Christ when you lie down, Christ when you sit down, Christ when you arise,
Christ in the heart of every man who thinks of you,
Christ in the mouth of everyone who speaks of you,
Christ in every eye that sees you,
Christ in every ear that hears you.
12/12/2006 Evening Update
Rees had a nice quiet day, which is much needed every now and then. He did
have his first eye exam. Although the cause is unknown, many preemies
retinas do not form correctly. Fortunately, at this point, Rees shows no
abnormalities. He will continue to get his eyes checked every few weeks until
he goes home.
The doctors are “thrilled” with how well Rees is doing and how far he has
come. The major concern right now is his belly. While that needs several
weeks to heal and grow before any further steps can be taken, the doctors feel
he is ready to really work on his breathing. Rees may try cpap again at the end
of the week.
Of course, an ongoing concern is keeping him infection free. Right now we are
all clear and we are so thankful.
12/11/2006 Evening Update
Rees is 6 weeks old and he was a mighty big boy today. They took out his
breathing tube and he took breaths by himself for about 10 hours. He was very
mad after the procedure. He was squirming and kicking more than ever and
turned red. He did not like having things shoved up his nose. He settled down a
bit tonight, probably because he wore himself out. At midnight he decided to
hold his breath, so they decided to put the breathing tube back in. Hopefully
next time, he will be ready to keep the breathing up by himself for much longer.
The graduation to cpap today was quite a shock to us and to his nurses and
other doctors. When the doctor told me this morning of the plans I almost fell
over because we didn't think this would be a possibility for several more days.
She didn’t want to miss this opportunity to try it out while he was doing so well.
It is important for babies to try cpap, even if it is for a short time, because it
gives their lungs a break from the pressure of the ventilator, which causes
short-term damages the lungs, and lets them practice really using their lungs.
A few weeks ago when Rees was sick and extremely swollen, they gave him
heavy doses of medicine to paralyze him. One of the reasons for this choice
was that if he pulled his breathing tube out, which many active babies do, they
may not be able to get a tube back in. We are so thankful to be past that scary
point and back on track and progressing with his respiration.
12/11/2006 Morning Update
Rees has grown! Yesterday Rees was a little mad because it was very noisy,
so we couldn’t play very much. I sang to him and watched him. All of a sudden
I realized his nose was much bigger than before. His nostrils are perfectly
round and they use to be so tiny that spaghetti wouldn’t have fit. Now I think we
could slide an overly cooked piece of spaghetti in his nose with plenty of room.
His hands are bigger too.
Almost all of his edema is gone from when he was sick, so we can finally see
what is real growth. He hasn’t been weighed in almost a month, so we are
anxious to see how heavy the little guy is now.
Daddy said Rees was a little sleepy this morning—he only opened his eyes to
say hello.
12/9/2006 Evening Update
Rees is having a very good weekend thus far! He has spent most of his time
sleeping like the little angle that he is.
We are optimistic that Rees will be able to get off of his ventilator and begin
breathing from a C-PAP device within a week. Another good progress note is
that he had tiny poopy diaper today--an awesome sign that his plumbing is still
working after the traumatic week his belly has had. Maybe he will get to eat
sooner than expected. The surgeons noted at the beginning of the week that it
may be 5-6 weeks from now.
Rees has perfected the art of waving to people with his feet when they tell him
hello. Today he greeted his surgeons with a shake of his right foot! They were
very impressed.
We hope for more of the same stable progress tomorrow.
Love,
Amy, Mark and Rees
12/8/2006 Morning Update
Although Rees has had a set-back this week with his belly infection. We are
very relieved that the cultures from the blood stayed infection free. The
doctors are also very glad that Rees stayed stable with his respiration and
blood pressure while he’s been sick. Many times when preemies are sick they
need more help with the respirator and blood pressure medicine, and it takes
awhile to get back to their pre-sick levels. Rees has done so well they lowered
some of his nitric oxide (an additive that helps absorb more oxygen into the
blood vessels of the lungs).
Our big prayers for next week is for Rees to continue draining the icky stuff
from his belly, improving on his breathing so it won’t be long until we can try
cpap again and remove his intubation tube, and that the doctors think his
tummy is well enough to start feeding him formula again. Right now Rees is
receiving all of his nutrition through his central line, he’ll start growing much
faster when he is on real food.
Shift change just ended, time to call Rees, Love, Amy & Mark
12/7/2006 Evening Update
Rees looks like he his recovering well from his latest belly infection, although
the specific bacteria is still being identified. The good news is that the
antibiotic cocktail he is on seems to be working and the cultures from his
blood are still clear of infection.
Today when I had my hand cradling Rees’ head I started to feel jerky
movements. When I looked at his chest, it was jerking at the same time. I got
very worried thinking that his ventilator settings might be too strong. Nothing
looked different from my now-pretty-good-ventilator knowledge, so I called the
nurse. She quickly made a diagnosis: hic-ups. Since is vocal cords are still
separated by his breathing tube he couldn’t make the identifiable hic-up sound;
otherwise, mommy may have been able to figure it out on my own.
The day nurse told me that Mark and I could probably hold Rees up over the bed
tonight while the night nurse changed his bed. I was so excited. But, when we
walked in this evening, his sheets were already changed. I was trying really
hard not to start crying in disappointment because I didn’t want to hurt our
sweet nurse’s feelings. (Yesterday she fought back tears telling us how
scared she was when Rees’ tummy started doing worse.) But, then she said
his bed was already changed, so that we could hold him for a longer amount of
time. Rees stayed in his snuggly (soft, swaddling bed) and both mommy and
daddy held him close up to our body. I can’t describe how wonderful it felt.
Rees loved it too! The nurses and doctors measure how happy Rees is by his
oxygen saturation, which is read by a glowing red light on his hand or foot (in
adults on a fingertip). He was 100% the whole time. If Rees gets mad when the
nurses are messing with him, he dips down to the 80s. When he was really
sick, he was mostly in the 70s.
12/6/2006 Afternoon Update
Rees’ belly is a little red and his abdominal incision came open a bit. The
doctors are concerned that he has a new infection. They immediately started
him on several broad-spectrum antibiotics, and because the drains in his belly
are doing their job of draining the icky stuff out, they don’t think he will require
another surgery. They took several cultures and should have an identification
of what is causing the problem tomorrow.
Once again, they caught this very early thanks to his fabulous, caring nurses.
His nurse said that when she came in and told Rees good morning, he didn’t
seem his usually self. She said he opened his eyes to see her, but they weren’t
as perky as usually. She immediately found the doctor to come look at Rees
because she didn’t think he was feeling well. (She hadn’t even looked at his
belly yet!) When the doctor came to look at him they found the irritations on his
belly. How amazing that Rees’ nurses care so much for him and know him so
well that she knew something was wrong before she even examined him.
They are such a blessing to the babies.
I was there when they started the antibiotics and within an hour Rees started
looking around with more interest and squirming around a little more—signs
that he was starting to feel better. Then, all at once his infectious disease
specialist, day doctor, surgeon and pediatrician from Kelsey-Seybold were all
there checking on Rees. Daddy got there just in time so we both got to hear the
reports from each. We are so thankful for such wonderful doctors to look
after our tiny baby.
We are praying that this infection clears quickly and that it doesn’t spread. He
is a tough little angel, but we need him to continue to stay strong.
12/5/2006 Evening Update
Yesterday Aunt Carrie's class asked if a priest could visit Rees. I told her that
the rules were very clear: only parents and grandparents.
But......when I was talking to Rees this morning, someone said "Mrs. Potts."
When I turned around it was Father Bill from Corpus Christi Church who came
to visit me while I was in the hospital. Through my tears, I did manage to take a
few pictures after Father Bill blessed Rees and crossed his little foot with holy
water.
I guess priests are considered "fathers" in the NICU too and that Mrs.
Stratton's class had some pull.
Rees had another good day today. Mommy had a good day too. I even made it
to the museum Christmas party. I had planned to go to a lecture too, but ran
out of steam.
12/4/2006 Evening Update
The infectious disease team from Tx Children’s took Rees off two of his
antibiotics today. He has had clear cultures for 5 days. This is wonderful news
that indicates that his infection has cleared. They will continue checking the
cultures daily for a couple of more weeks. We are cautiously celebrating,
knowing how susceptible to infections preemies are. We praying very hard
that he stays infection free for a substantial amount of time. He can’t afford for
anything to happen to his central line, since he only has one more potential site
and he has at least 3 more months to go in the NICU.
Another sigh of relief; since Rees had gotten sick two weeks ago, they began
doing weekly brain scans to check for brain bleeds, since this can occur while
preemies are very ill. All scans were normal and he has no more scheduled
until a routine scan before his discharge to go home.
Every time we visit Rees, there is an improvement in his edema. We are hoping
all of the swelling is gone by the end of the week.
12/3/2006 Evening Update
Rees had another great day. One of his surgeons came by this morning, just to
visit--a nice change. He is very proud of our tough little guy.
So far, all of the cultures from Rees’ blood and new central line show no signs
of infection. If the cultures are still infection-free by the end of the day Tuesday,
we will officially be in the clear.
Last night Rees got his new Christmas hat that one of the nurses made. It is
very fancy: red with white designs and gold beads. We keep telling Rees that
he is such a big boy; that we don’t know anyone else his age (28 weeks
gestation) that can wear hats. He is just like a college kid with his noisy
roommates that stay up all night. Rees even sends his dirty laundry home for
mom to wash. He has a special soft bed that fits insides his big bed. It is
called a “snuggly.” The snuggly can’t go in the hospital’s big industrial
washers, so one of the chores of NICU mommies is taking home the snugglies
to wash.
12/2/2006 Evening Update
We are happy to report that Rees had an uneventful day. His blood pressure,
heart
rate, oxygen saturation, blood gas, ventilator settings and temperature (the
main numbers that are monitored around the clock) were stable all day.
Big day for Mommy and Daddy: we got to give Rees a kiss on his forehead.
There is nothing like your first kiss!
After much pouting for getting left out yesterday, Daddy got to pick Rees up
today.
12/1/2006 Evening Update - New Central Line
The surgeons returned today and removed the infected central line from Rees’
leg and inserted a new line in one of his jugular veins (safer than it sounds).
The procedure went very well and Rees is recovering nicely and enjoying
kicking up his leg that he wasn’t able to move very well.
Before the surgery, the surgeon told us the two things to pray for: that he could
get the new line in and that it won’t get infected. One prayer answered, one to
go. Please help us with the second and incredibly important prayer request for
Rees.
After the surgery they were fixing up his bed. His doctor was holding him in the
air above the bed while the nurse got his new bedding ready. I told the doctor
that I couldn’t imagine how heavy he must feel. She said to put my hands under
him and see. I didn’t see how I would be able to tell if she was already
supporting his weight, but we always do what the doctor said. I couldn’t
believe it but she pulled her hands away and I held him by myself. I’m still
grinning.
Although Daddy doesn’t feel it is as quite as momentous, he got to do
something probably more people will remember for years to come. He put his
wedding band on Rees’ arm. His hand slid easily through the ring and he his
arm had plenty of room to grow on. A great picture to pull out on Rees’
wedding day when he is a happy grown man.
We are hoping that this coming week is a quiet week of healing for Rees to get
over all of his infections, and that Mommy and Daddy get a little R&R too.
| Mommy holds her angel for the first time! |
| Dad can hold Rees too! |
The First Potts Family Photo Shoot!
| First Born |
| 3 Days old with Mom watching |
| Touchdown Rees! |
| Thanksgiving Hat |
| Mommy holds her angel for the first time! |
| Dad can hold Rees too! |
The First Potts Family Photo Shoot!
| First Born |
| 3 Days old with Mom watching |
| Touchdown Rees! |
| Thanksgiving Hat |
| Christmas Hat |
Merry Christmas from Rees and
Santa Claus M.D.!
Santa Claus M.D.!
Rees dressed up for Christmas.
Note his holiday sheets - a present
from Kaitlin, his nurse.
Note his holiday sheets - a present
from Kaitlin, his nurse.
The boys with matching pants!
Aunt Carrie came to visit.
Kangaroo Amy with Rees.
Look at my chubby cheeks!
