February 2007 - Month 4 in the NICU
2/28/2007 Rees - Hot off the Press
Our little angel is featured in the March 1 Houston Chronicle in a story about premature
babies. They interviewed Rees on Feb. 22 (his due date). View the article online—there
is a sweet slideshow of Rees and mom. Watch it once all the way through to hear the
audio, then you can click the numbers on the bottom to look at each picture one by one.
When you read the article say a prayer of thanks that Rees’ brain is healthy—he had a
95% chance of having brain bleeds, we are blessed not to have that major problem.
Article: http://www.chron.com/disp/story.mpl/front/4591636.html
Slideshow: http://www.chron.com/content/chronicle/special/07/babies/
Rees had a very good day on Wednesday. He looks great too. He is growing at a
tremendous rate. At 3 a.m. he weighed in at 8 lb. 15 oz! We expected him to stay the
same for a while since his swelling is still going down, but he is growing like little Pee
Wee (grandma’s favorite Golden Book story).
Mom and dad had a good day too—we closed on our condo—one less thing to worry
about. Our goal was to give a good deal to someone in the medical profession and we
did. A nice family bought the condo for their daughter who is starting med school. Her
mom was a nurse at MD Andersen for many years. Her sister is also in med school.
2/27/2007 Evening Update
Rees is doing much better today! He is now down to 26% oxygen, a very low amount,
and the x-rays of his lungs show great improvement. Because he has recovered so
quickly, his doctor doesn’t think he has pneumonia. The loss of volume in his lung could
have been caused by his enlarged liver pressing up on his lung and the remaining
edema. Both of these factors cause increased pressure creating too much work for
Rees. As his swelling slowly goes down, and his liver gets better from getting off of the
iv nutrition, Rees will be able to breathe much easier on his own.
Pneumonia is fairly common for preemies who are on the ventilator for long periods
because the ventilator acts as a conduit for bacteria to enter the lungs. They cannot
complete rule out pneumonia in Rees’ case until the strain from the culture that grew is
identified, which will take a little more time.
Rees also started eating again today and did very well. His belly is looking much better—
most of the redness has gone away. Mom and dad are doing better today too. When we
asked how big of a set back this latest scare is for Rees, the doctor said less than half a
step. This is a huge relief. Thank you all for your prayers that keep the three of us going
every day.
2/26/2007 Evening Update
It looks like Rees has pneumonia in his left lung. He will be on a course of antibiotics
and breathing treatments for a while. His left lung was slightly collapsed, but has
already started showing signs of improvement. So far, none of the blood or spinal
cultures have come back showing signs of infection. Rees’ belly is looking better and he
may get to start his feeds tomorrow.
Rees seems to feel a little better this evening—he peeked at mom and dad when we got
there to tuck him in. He is much more active than yesterday. Mom and dad, on the other
hand, are worn out from this last infection scare, but relieved that it was caught and
treated quickly—and that no problems have shown up in his belly or central line.
2/25/2007 Tough Day
Today was a day with polar opposite highs and lows. This morning Rees did very well
on his et-cpap test, so he was extubated and put on nasal cannula. Mom got a nice,
long hold in and changed a wonderfully poopy diaper before lunch. We were so excited
he was doing so well.
When dad returned after lunch thought, they had just put him on cpap because he
tuckered out on the cannula. When we were getting ready to go see him for our
afternoon visit, the doctor called. She suspected that something wasn’t right because
Rees’ temperature dropped and he was a bit lethargic, so a full sepsis work-up with
spinal tap was ordered. They also thought his belly was looking a little red.
After dinner mom and grandma went to tuck him into bed and he was sleeping soundly
from the long day. A few minutes after we got home, we called his nurse with a
question. His doctor answered the phone and said they just put Rees back on the
ventilator. This time he is on a pediatric ventilator that has a few more options than the
neonatal ventilator, which should help him when off a little easier. They think his trouble
breathing has to do with the possible infection.
We are hoping his cultures, especially from his central line, are clear of infection. But
thankfully, if he does have an infection they caught it very quickly. Rees is back on two
antibiotics and his feeds have been stopped until more is know about his belly.
2/24/2007 Evening Update
Rees had a very nice day today. He rested on his tummy most of the day and mommy
got to hold him. This was the first time he’s been held since his belly surgery two
weeks ago. Today was his nurse Nefertari’s birthday. When we got there tonight to
tuck him in, she said Rees gave her the best present. Yes, you got it: poop. Today he
had a record number of poopy diapers since the surgery to repair his intestines, so
everyone is feeling more confident that the surgery did the trick.
Tomorrow is a big day. Rees is testing his breathing on et-cpap (breathing on his own
through the tube in his throat). If he does well, he gets to skip cpap and go straight to
the nasal cannula. We are praying hard that he breathes with ease.
Tonight we had our first shower for Rees. It was a nice evening with friends whom we
obviously haven’t gotten to spend much time with lately. Thanks to honorary Aunt Ruth
for hosting.
2/23/2007 Evening Update
Last night Rees got to start wearing clothes again. Since his surgery two weeks ago
they have needed to watch his belly closely, so he needed to be exposed. He has
happily outgrown all of the teeny tiny preemie outfits and is wearing big boy newborn
clothes. Since the warmer over the bed is off again, we hung up his mobile. He is
enjoying having it back.
Because of the celebratory poop yesterday, the doctor doubled Rees food today and
lowered the amount of his iv nutrition. He did very well. And, yes, he pooped again today.
Rees’ grandparents from Indiana came to see him this morning. This was the first time
Paw Paw (David Rees Potts) has seen Rees. And the first time GiGi has seen him since
he was a few days old—what a difference!
When dad and I went to tuck Rees in tonight he was sleeping soundly on his
tummy…another post-surgery milestone.
2/22/2007 Rees' Due Date
Happy Birthday Aunt Michelle
This day is a little surreal. It is Rees’ due date. Although we wouldn’t recommend the
preemie adventure unless necessary, we did get to watch our little angel grow in a very
special way. Even with some frightening times, we have loved getting to know our
sweet baby.
Today Rees is 8 lbs 6 oz. We are so happy the stresses of prematurity haven’t stunted
his growth in a dramatic way. I’ve been saying recently, “when Rees was little.” Then I
catch myself and grin—not many people say that phrase when their baby is this size.
Big news for the day: Rees pooped! Yippee. His repaired intestines are doing their job
very nicely, so he may get a larger amount of formula tomorrow. Our cutie looks so
good and only has a little swelling left. The large incision from his surgery is healing
beautifully.
2/21/2007 Evening Update
The counter on Rees’ website past 10,000 hits today! Mark and I are so overwhelmed
that so many people are keeping up with our little angel. We know that 10K is just a
small fraction of the number of prayers that have been said to ask God to watch over
our sweet miracle baby.
Rees is looking less and less SWELL everyday. He is still doing well with his feeds, but
he has yet to have a formula poop, sooooo we are praying that he poops very soon so
his doctors will increase the amounts of his feeds, so the amount of iv nutrition that is
hard on his liver can be decreased. His ventilator settings are very low. The plan is to
try cpap again this weekend.
2/20/2007 Evening Update
Rees had a very good day today. After spitting up a little this morning, Rees bounced
back and kept down all of his food the rest of the day.
His eye doctor came today and said his ROP is “fully regressed.” Yipppee! The laser
surgery has completely stopped the progression of a condition that could have cost
Rees his sight.
Rees is also doing very well neurologically. One of his pediatricians said he is showing
behaviors that indicate he is doing very well: moving asymmetrically and having his
hands open in a relaxed position. Having a healthy brain with no brain bleeds was one
of the biggest blessings Rees had early on.
2/19/2007 Evening Update
Rees had formula today. He was very happy to have food in his tummy. So far he is
doing very well with his feeds (7ccs, every 3 hours). His doctors are continuing to lower
his ventilator settings in preparation for cpap.
2/18/2007 Evening Update
Rees had a nice restful day. He is doing very good with his pedialite, so the doctors are
discussing when he can get formula. The incision on his belly is healing very nicely.
And he continues to please mom and dad with poop and pee.
Last night his nurse Charlette gave mom and dad baby massage lessons. She said that
can help loosen up the fluid so it can be more easily absorbed. After his bath, we got to
help hold Rees up while Charlette changed his bedding—he is so much heavier than the
last time we got to hold him a few weeks ago.
2/17/2007 Evening Update
Rees had a workout today. The turned his ventilator to cpap settings, which essentially
meant he was breathing on his own through a straw. He did pretty good for several
hours, but then was having to work too hard because of the extra weight of the edema.
The good news is that he had no apnea spells. As soon as the swelling goes down
some more, he should be breathing easily.
Our sweet little guy was very agitated today, which is hard for mom and dad. The
doctors think they may have weaned him off of his post-op morphine too quickly. Now
they are continuing him on the pain medicine and have a scheduled, slow decrease
planned so he can comfortably adjust.
2/16/2007 Evening Update
Rees had a great day today! His swelling dramatically reduced and he almost looks like
his old self. The doctors are tweaking down his vent and are hoping to get him on cpap
this weekend.
The big news is that Rees got to eat today! He has had two feedings of pedialyte and is
doing very well. This is a few days ahead of schedule. Right now all feedings are
through the feeding tube. We don’t think he’ll attempt bottles until he is back on nasal
cannula.
We finally went to Baby’s R Us tonight to pick out baby gear. Grandma has been sewing
all week to put the finishing touches on his room. We are still being patient, but starting
to get excited about bringing our little angel home.
2/15/2007 Evening Update
Rees had a nice restful day today. His is starting to look a little less SWELL. He can
now open his puffy eyes without straining. A couple of days ago they were almost
swollen shut.
The doctors have been turning his ventilator settings down in preparation for going back
on cpap ( PEEP now at 5). Rees has not minded the changes, so we are hoping for a
smooth transition to cpap when his swelling goes down. Right now the extra weight
would make breathing very hard work.
2/14/2007 Happy Valentine's Day
Guess what mom and dad wanted for Valentine’s? Yes, you’re right. All we ever want
from Rees is poop and pee. And we got it! Rees had green seedy poop last night. The
surgeon was very excited to hear the news because the color indicated that it
originated towards the beginning of his intestines and made it all the way down out his
hiney.
His potassium level is back in normal range so Rees is back on lasiks—more tee tee
from Rees soon followed. His swelling is starting to slowly go down.
There were several cloth wicks coming out of Rees’ belly incision to help drain fluid.
Today the surgeon removed these wicks and his belly is looking very nice. Grandma
said the wicks came out easily—she is very glad they are gone. Mom and dad barely
notice strange things coming out of Rees’ belly anymore. We just can wait to kiss and
tickle it.
Rees loved his Valentine cards, bear, dog and baseball.
2/13/2007 Please Give Blood
Happy Birthday Uncle Jeff!
Rees routinely needs blood and platelets to restock from his many blood tests,
especially after surgery. Today we had a little scare.
There is a very big blood shortage right now. When the doctor ordered for a platelet
transfusion, it was delayed because of the protocols during a blood shortage. This
upset us pretty badly. He did get his platelets within an hour or so—after we panicked
and started tracking down donors. However, the blood from anyone who donated today
would have taken 3 days to process and get to Rees. We were told later that we
shouldn’t have worried. (Us not worry? Ha!)
Of course Rees can’t have my crazy blood and he doesn’t have a compatible blood type
to any of our Houston relatives, including dad.
If you are able, please take time to donate your healthy blood. It is the best gift you can
give—and it’s free. It doesn’t matter where you live or if you donate in someone’s
name—it will save a life. The blood banks do a good job of getting blood where it needs
to be. When I had transfusions during pregnancy, I got blood from as far away as Illinois
and Kentucky.
Because there are special tests run on the blood for preemies, there is a little
paperwork to set-up a direct donor account for Rees. We are going to get this done
because of the many requests from friends, then if anyone wants to donate directly to
Rees they can. Rees is B-. If you are B- or O-, Rees can be a recipient. If you are B- or
B+, Rees can receive your platelets. We’ll let you know when the account is ready.
Thank you to Aunt Carrie and Uncle Michael who rallied the B- troops in Waco—we don’t
think they can do transports for direct donors that far away, so tell every one there to
just give to the general blood bank.
2/12/2007 Evening Update
Our SWELL little Reesy had a nice restful day. He brought his nurses and doctors
Reese’s peanut butter hearts for Valentines.
Mom did have to ask at a doctor visiting a neighbor to keep her voice down. Rees hates
noise and responds by sky-rocketing his blood pressure. The nurses were very proud I
fussed at the doctor.
2/11/2007 Evening Update
Rees still recovering from the big surgery. He is very very SWELL. Hopefully the
swelling will stop increasing and start going down soon. We are trying not to wake him
because you can tell he hurts when he moves.
His vitals are now stable in the normal range and he is still tee teeing. This afternoon he
had a record diaper weight—his nurse said it was “enough to swim in.”
Next time you change a child’s diaper, say a prayer of thanks for the things we all take
for granted, and sometimes get annoyed with: poop & pee.
2/11/2007 Morning Update
Amy called the NICU hourly last evening. Early this morning, we found out that Rees has
turned the post op corner. They pumped enough fluids into him that his heart rate
dropped and blood pressure rose. He is already off the dopamine. Rees is also tinkling
like an all star.
Rees is more stable and still "SWELL."
2/10/2007 Evening Update
One day we are praying for poop, the next we are praying for tee tee.
Rees is having trouble with his blood pressure and not wetting his diapers, because his
fluids are seeping from his blood vessels into his tissues (called “3rd spacing”), instead
of getting processed through his kidneys. This is common for preemies after gut
surgery, but an issue that is not taken lightly. They started him on dopamine. He is also
getting very large volumes of fluids into his bloodstream to get his heart rate down and
blood pressure up. As soon as his blood pressure goes up, he should start peaing.
(Mom & grandma even tried the old slumber party trick: one hand in warm water, but no
luck.)
His belly is looking very good post op. He is quite swollen, but his coloring is very good.
He was more alert than we expected today, but you could tell he was in a little pain.
When we tucked him in tonight we turned on his music and he seemed to enjoy it. We
will be calling every hour tonight to see how he is doing. This is stressful, but we are
still elated that his surgery yesterday went so well and that we are headed in the right
direction.
2/9/2007 Successful Belly Surgery
Rees’ belly is fixed! The surgery was better than expected—the surgeons were able to
fix the problem they knew about, plus a couple more that were discovered along the
way.
First, the surgeons were able to put in a double lumen central line, which give the
nurses enough ports to run all of his nutrition, blood and meds without having to start
ivs.
Then they opened up his belly and his insides looked much better than they had
expected. They followed the fistula to the perforation in the small intestine. Then they
found a second perforation close by in the large intestine, which no one knew about. In
between these two bad spots of small and large intestine was the appendix, which was
starting to look sick. With two cuts all of the bad parts were removed and the two ends
reconnected. They also looked at his bladder and confirmed that there was not another
fistula there.
Rees’ belly which had made him deathly ill over the past 3 months is now fixed. The
surgeons do not expect any long-term problems with his belly. We are so thankful to
God and his superb medical team!
Our tough little angel did very well making it through this tough procedure. Rees will be
on morphine for pain for several days. After he feels better and the pain medicine is
stopped, they will work on getting him off of the ventilator and onto cpap. Hopefully it
will be a fairly quick transition, and then onto nasal cannula. He will probably start
eating again in about 10 days. His is also going to be very swollen from the procedure
and extra fluids—but like Dr. Bloss says “Rees is SWELL.”
2/8/2007 Evening Update
This morning Rees’ belly was more inflamed and more poop was coming out of his
fistula than his hiney. The surgeon was called in and the OR booked for 2:30 on Friday.
Rees is scheduled for the big surgery on his belly. The plan is to remove the fistula and
the connected, damaged portion of the intestines. It sounds straight forward, but it is a
very difficult surgery since preemie intestines are very delicate and his are “stuck”
together from his previous infections. The surgeons will also look around for any other
culprits for Rees’ irritated belly.
They had also planned to put in a new central line at the same time, but late today one of
the blood cultures that had been negative showed signs of yeast. We don’t think they
will proceed with the new central line, but will probably still go forward with the belly.
As soon as he gets the new central line, the better. He went through 5 ivs today
because his medicine and nutrition are so tough on his little veins.
This evening, after choking on a little “golitely” (to clear his bowels for surgery), Rees
held his breath, so they had to intubate him. He was going to go back on the ventilator in
the morning before his surgery, so this isn’t a set-back. The good news is that the x-
rays did not show any aspiration in his lungs. When we tucked him in tonight he was
sleeping very well, enjoying the break from the hard work of breathing.
We are praying that God continues to keep Rees tough and guides every move the
doctors make tomorrow.
2/7/2007 Evening Update
Our little angel has had poop in every diaper today. He also seems to be feeling a little
peppier. He is also progressing on several fronts. One of his blood cultures has not
grown yeast in 48 hours, so if it stays clear, he will probably get his new central line on
Sunday. Although central lines are risks of infection, his veins are getting very stressed
with the strong medicine and nutrition constantly running through ivs.
This morning Rees’ doctor said he may need to go back on the ventilator today. Rees
must have overheard the conversion and began taking deeper breaths, because his
following x-ray and blood work showed great improvement. He gets to keep his cpap
for now.
The ultrasound did not reveal anything abnormal or unexpected, so the investigation will
continue to figure out what is going on in Rees’ belly.
Since I’m getting requests for more mommy updates…I had an appointment with my ob
today. She said my cervix was beautiful and totally healed from the ripped cerclage
that held Rees in the last few weeks. In 2006, I had appointments every day from July
to October—it is weird and wonderful to hear the doctor say “we’ll see you back in 12
months.”
2/6/2007 Evening Update - The Scoop on Poop
As some of you saw from our mid-day update, our hundreds of prayers for poop were
answered today at 11:15 a.m., and continued with 5 more poopy diapers in the following
10 hours—a record. Rees’ mommy, daddy, nurses and doctors were all jumping for joy
as word spread through the NICU—I’m not exaggerating. The amount coming from his
fistula has also dramatically lessened.
Now that his intestines are going with the flow, it looks like Rees can avoid the very
serious bowel surgery. They are still planning ultrasounds, CT scans, x-rays for his
belly to see what is going on since it is red and inflamed. We are hoping that there is a
detectable abscess that can easily be located and drained without exploratory surgery.
More good news: Rees’ third weekly follow up eye exam had good results and he has
graduated to getting his eyes examined every two weeks.
2/6/2007 Mid-Day Update
Rees pooped! More than he ever has in his whole life, with a little help from his
surgeon to get things going.
One other amazing thing about Rees' poop. It looks just like breast milk poop (very
seedy) and nothing like formula poop. Everytime a doctor or nurse sees his poop, they
ask me very puzzled if he's had breast milk, knowing that I'm taking chemo and breast
milk is not possible. Even though mom can't breast feed, God is somehow letting Rees'
formula be processed just like he would if he was getting mom's milk.
2/5/2007 Evening Update
Rees is unfortunately back in familiar territory: blood infection, lots of antibiotics, need
to poop, swelling.
The cultures today confirmed yeast in his blood, which dictated the removal of his
central line (this time mom got to watch). Yeast is one of the hardest things to clear
from the blood. Rees will be on anti-fungal medicine for 30 days. Once the infection is
cleared, hopefully early next week, they will consider surgery for a new central line.
Until he gets a new central line they have to start a new iv every day for his lab work and
iv nutrition.
His urine cultures also showed three different infections that are usually found in the
intestines. So once his blood is clear, they will investigate the possibility of a fistula
from his intestines to his bladder.
Rees really needs to poop, preferably from his hiney, but out his belly from his fistula will
do. He has been eating for several days, but nothing has come out the back end. The
feedings so far have helped decrease his direct bilirubin and helped his liver, so we’d
like to continue. The surgeons are still hoping to wait as long as possible before they
have to operate on his belly, and there is still a slight chance they won’t need to.
Mom, dad and Rees’ team of doctors and nurses are still trying to grasp the
combination of complications. We are praying hard that Rees responds quickly to the
antibiotics and POOPS! Luckily, Rees does not look or act sick. He is alert and doing
well on his cpap. Last night he weighed 6 pounds 5 ounces.
2/4/2007 Super Bowl Sunday Post Game Report
Today, Super Bowl Sunday, Rees was decked out in his game day gear thanks to Uncle
Dan in Indianapolis and Uncle Matt in Chicago. Rees picked the winner – he repeatedly
kicked off his Bears socks and did not like listening to the Super Bowl Shuffle. He did
like his Colts outfit, even though it was a bit big, and his blue football Mardi Gras beads
that his doctor brought him back from New Orleans.
After talking to Rees’ surgeon today, we feel a little bit better about the possibility of
loosing Rees’s current central line, which is showing signs of infection.
1. If the current central line is removed, the infection should clear with medications.
(Rees has a fungal infection that feeds on the sugar in the iv nutrition (TPN)—another
reason we want him on real food. The fungal colony usually burrows in the central line
and doesn’t infect the rest of the blood.)
2. Now that Rees is bigger, there are a couple more sites that are possibilities for a
new a central line, instead of just one. There are also less invasive options that they
may try before a fourth central line: pic lines and peripheral ivs.
We are thankful that the quick response of Rees’ doctor on Friday lead to a very early
finding of this infection. We should know more on Monday when the head
microbiologist and infectious disease specialists check things out.
Rees is now 6 pounds 1.4 ounces! He has past Mom’s birth weight of 6 pounds even.
2/3/2007 Evening Update
Late tonight, after a nice, uneventful day, we got a call from Rees’ doctor. The culture
from his central line is showing signs of infection. We are very scared because this
could mean a serious blood infection, and his central line may have to be removed
before they are ready for it come out. He only has one more potential site for a central
line, which he needs for his iv nutrition.
Rees has now gone several weeks without antibiotics and is doing so well. We are
terrified what another infection could mean at this point. Please pray our little angel. He
is fighting so hard.
2/2/2007 Tough Day
Rees gave us quite a scare today, but tonight things seem to be back on track.
Overnight they had to put him on the highest level of oxygen for his nasal cannula and
start him back on caffeine because his oxygen saturation was creeping down and had a
couple of apnea spells. They thought he had grown another fistula from his intestine,
but this time to his bladder, because it looked like his urine had stool in it. He also had a
level in his blood gas (bicarb) come back elevated, which can indicate he may not be
dispelling enough carbon dioxide while breathing on his own.
All of these could be signs of an infection, so they did the complete work up: spinal tap
(this time mom got to watch), urine culture, and several blood cultures from different
sites. We were very scared about his central line.
Then this evening his wonderful surgeon came and took a look. Luckily, the fistula to
the bladder was a false alarm. So far, none of the cultures have come back showing
any sign of infection. Rees is back on cpap and is comfortable catching up on his sleep
from the busy day. Mom and dad (and his nurses and doctor) are worn out too. This
scare after he had been doing so well, was extremely stressful.
Rees is continuing on his feeds. The plan, which of course could change at any minute,
is to get him up to full feeds. At that point he will not need iv nutrition. Then the
surgeons will look at fixing his belly, and be able to use the central line for surgery and
then remove it.
2/1/2007 Evening Update
Rees has a new friend who is interested in tracking his process: Dr. T. Berry Brazelton.
Mom and dad talked to him by telephone today. A mutual friend contacted him to have a
book signed for us, then he asked if we could call him. His unmistakable voice was
strange to hear for the first time personally talking to us. Dr. Brazelton was very
amazed at Rees’ progress. Just think, when he began practicing medicine, there was
no possibility of a baby born as early as Rees to survive.
Big news of the day: Rees had a tiny poop out of his hiney and none from his belly!
Hopefully this trend will continue.
2/28/2007 Rees - Hot off the Press
Our little angel is featured in the March 1 Houston Chronicle in a story about premature
babies. They interviewed Rees on Feb. 22 (his due date). View the article online—there
is a sweet slideshow of Rees and mom. Watch it once all the way through to hear the
audio, then you can click the numbers on the bottom to look at each picture one by one.
When you read the article say a prayer of thanks that Rees’ brain is healthy—he had a
95% chance of having brain bleeds, we are blessed not to have that major problem.
Article: http://www.chron.com/disp/story.mpl/front/4591636.html
Slideshow: http://www.chron.com/content/chronicle/special/07/babies/
Rees had a very good day on Wednesday. He looks great too. He is growing at a
tremendous rate. At 3 a.m. he weighed in at 8 lb. 15 oz! We expected him to stay the
same for a while since his swelling is still going down, but he is growing like little Pee
Wee (grandma’s favorite Golden Book story).
Mom and dad had a good day too—we closed on our condo—one less thing to worry
about. Our goal was to give a good deal to someone in the medical profession and we
did. A nice family bought the condo for their daughter who is starting med school. Her
mom was a nurse at MD Andersen for many years. Her sister is also in med school.
2/27/2007 Evening Update
Rees is doing much better today! He is now down to 26% oxygen, a very low amount,
and the x-rays of his lungs show great improvement. Because he has recovered so
quickly, his doctor doesn’t think he has pneumonia. The loss of volume in his lung could
have been caused by his enlarged liver pressing up on his lung and the remaining
edema. Both of these factors cause increased pressure creating too much work for
Rees. As his swelling slowly goes down, and his liver gets better from getting off of the
iv nutrition, Rees will be able to breathe much easier on his own.
Pneumonia is fairly common for preemies who are on the ventilator for long periods
because the ventilator acts as a conduit for bacteria to enter the lungs. They cannot
complete rule out pneumonia in Rees’ case until the strain from the culture that grew is
identified, which will take a little more time.
Rees also started eating again today and did very well. His belly is looking much better—
most of the redness has gone away. Mom and dad are doing better today too. When we
asked how big of a set back this latest scare is for Rees, the doctor said less than half a
step. This is a huge relief. Thank you all for your prayers that keep the three of us going
every day.
2/26/2007 Evening Update
It looks like Rees has pneumonia in his left lung. He will be on a course of antibiotics
and breathing treatments for a while. His left lung was slightly collapsed, but has
already started showing signs of improvement. So far, none of the blood or spinal
cultures have come back showing signs of infection. Rees’ belly is looking better and he
may get to start his feeds tomorrow.
Rees seems to feel a little better this evening—he peeked at mom and dad when we got
there to tuck him in. He is much more active than yesterday. Mom and dad, on the other
hand, are worn out from this last infection scare, but relieved that it was caught and
treated quickly—and that no problems have shown up in his belly or central line.
2/25/2007 Tough Day
Today was a day with polar opposite highs and lows. This morning Rees did very well
on his et-cpap test, so he was extubated and put on nasal cannula. Mom got a nice,
long hold in and changed a wonderfully poopy diaper before lunch. We were so excited
he was doing so well.
When dad returned after lunch thought, they had just put him on cpap because he
tuckered out on the cannula. When we were getting ready to go see him for our
afternoon visit, the doctor called. She suspected that something wasn’t right because
Rees’ temperature dropped and he was a bit lethargic, so a full sepsis work-up with
spinal tap was ordered. They also thought his belly was looking a little red.
After dinner mom and grandma went to tuck him into bed and he was sleeping soundly
from the long day. A few minutes after we got home, we called his nurse with a
question. His doctor answered the phone and said they just put Rees back on the
ventilator. This time he is on a pediatric ventilator that has a few more options than the
neonatal ventilator, which should help him when off a little easier. They think his trouble
breathing has to do with the possible infection.
We are hoping his cultures, especially from his central line, are clear of infection. But
thankfully, if he does have an infection they caught it very quickly. Rees is back on two
antibiotics and his feeds have been stopped until more is know about his belly.
2/24/2007 Evening Update
Rees had a very nice day today. He rested on his tummy most of the day and mommy
got to hold him. This was the first time he’s been held since his belly surgery two
weeks ago. Today was his nurse Nefertari’s birthday. When we got there tonight to
tuck him in, she said Rees gave her the best present. Yes, you got it: poop. Today he
had a record number of poopy diapers since the surgery to repair his intestines, so
everyone is feeling more confident that the surgery did the trick.
Tomorrow is a big day. Rees is testing his breathing on et-cpap (breathing on his own
through the tube in his throat). If he does well, he gets to skip cpap and go straight to
the nasal cannula. We are praying hard that he breathes with ease.
Tonight we had our first shower for Rees. It was a nice evening with friends whom we
obviously haven’t gotten to spend much time with lately. Thanks to honorary Aunt Ruth
for hosting.
2/23/2007 Evening Update
Last night Rees got to start wearing clothes again. Since his surgery two weeks ago
they have needed to watch his belly closely, so he needed to be exposed. He has
happily outgrown all of the teeny tiny preemie outfits and is wearing big boy newborn
clothes. Since the warmer over the bed is off again, we hung up his mobile. He is
enjoying having it back.
Because of the celebratory poop yesterday, the doctor doubled Rees food today and
lowered the amount of his iv nutrition. He did very well. And, yes, he pooped again today.
Rees’ grandparents from Indiana came to see him this morning. This was the first time
Paw Paw (David Rees Potts) has seen Rees. And the first time GiGi has seen him since
he was a few days old—what a difference!
When dad and I went to tuck Rees in tonight he was sleeping soundly on his
tummy…another post-surgery milestone.
2/22/2007 Rees' Due Date
Happy Birthday Aunt Michelle
This day is a little surreal. It is Rees’ due date. Although we wouldn’t recommend the
preemie adventure unless necessary, we did get to watch our little angel grow in a very
special way. Even with some frightening times, we have loved getting to know our
sweet baby.
Today Rees is 8 lbs 6 oz. We are so happy the stresses of prematurity haven’t stunted
his growth in a dramatic way. I’ve been saying recently, “when Rees was little.” Then I
catch myself and grin—not many people say that phrase when their baby is this size.
Big news for the day: Rees pooped! Yippee. His repaired intestines are doing their job
very nicely, so he may get a larger amount of formula tomorrow. Our cutie looks so
good and only has a little swelling left. The large incision from his surgery is healing
beautifully.
2/21/2007 Evening Update
The counter on Rees’ website past 10,000 hits today! Mark and I are so overwhelmed
that so many people are keeping up with our little angel. We know that 10K is just a
small fraction of the number of prayers that have been said to ask God to watch over
our sweet miracle baby.
Rees is looking less and less SWELL everyday. He is still doing well with his feeds, but
he has yet to have a formula poop, sooooo we are praying that he poops very soon so
his doctors will increase the amounts of his feeds, so the amount of iv nutrition that is
hard on his liver can be decreased. His ventilator settings are very low. The plan is to
try cpap again this weekend.
2/20/2007 Evening Update
Rees had a very good day today. After spitting up a little this morning, Rees bounced
back and kept down all of his food the rest of the day.
His eye doctor came today and said his ROP is “fully regressed.” Yipppee! The laser
surgery has completely stopped the progression of a condition that could have cost
Rees his sight.
Rees is also doing very well neurologically. One of his pediatricians said he is showing
behaviors that indicate he is doing very well: moving asymmetrically and having his
hands open in a relaxed position. Having a healthy brain with no brain bleeds was one
of the biggest blessings Rees had early on.
2/19/2007 Evening Update
Rees had formula today. He was very happy to have food in his tummy. So far he is
doing very well with his feeds (7ccs, every 3 hours). His doctors are continuing to lower
his ventilator settings in preparation for cpap.
2/18/2007 Evening Update
Rees had a nice restful day. He is doing very good with his pedialite, so the doctors are
discussing when he can get formula. The incision on his belly is healing very nicely.
And he continues to please mom and dad with poop and pee.
Last night his nurse Charlette gave mom and dad baby massage lessons. She said that
can help loosen up the fluid so it can be more easily absorbed. After his bath, we got to
help hold Rees up while Charlette changed his bedding—he is so much heavier than the
last time we got to hold him a few weeks ago.
2/17/2007 Evening Update
Rees had a workout today. The turned his ventilator to cpap settings, which essentially
meant he was breathing on his own through a straw. He did pretty good for several
hours, but then was having to work too hard because of the extra weight of the edema.
The good news is that he had no apnea spells. As soon as the swelling goes down
some more, he should be breathing easily.
Our sweet little guy was very agitated today, which is hard for mom and dad. The
doctors think they may have weaned him off of his post-op morphine too quickly. Now
they are continuing him on the pain medicine and have a scheduled, slow decrease
planned so he can comfortably adjust.
2/16/2007 Evening Update
Rees had a great day today! His swelling dramatically reduced and he almost looks like
his old self. The doctors are tweaking down his vent and are hoping to get him on cpap
this weekend.
The big news is that Rees got to eat today! He has had two feedings of pedialyte and is
doing very well. This is a few days ahead of schedule. Right now all feedings are
through the feeding tube. We don’t think he’ll attempt bottles until he is back on nasal
cannula.
We finally went to Baby’s R Us tonight to pick out baby gear. Grandma has been sewing
all week to put the finishing touches on his room. We are still being patient, but starting
to get excited about bringing our little angel home.
2/15/2007 Evening Update
Rees had a nice restful day today. His is starting to look a little less SWELL. He can
now open his puffy eyes without straining. A couple of days ago they were almost
swollen shut.
The doctors have been turning his ventilator settings down in preparation for going back
on cpap ( PEEP now at 5). Rees has not minded the changes, so we are hoping for a
smooth transition to cpap when his swelling goes down. Right now the extra weight
would make breathing very hard work.
2/14/2007 Happy Valentine's Day
Guess what mom and dad wanted for Valentine’s? Yes, you’re right. All we ever want
from Rees is poop and pee. And we got it! Rees had green seedy poop last night. The
surgeon was very excited to hear the news because the color indicated that it
originated towards the beginning of his intestines and made it all the way down out his
hiney.
His potassium level is back in normal range so Rees is back on lasiks—more tee tee
from Rees soon followed. His swelling is starting to slowly go down.
There were several cloth wicks coming out of Rees’ belly incision to help drain fluid.
Today the surgeon removed these wicks and his belly is looking very nice. Grandma
said the wicks came out easily—she is very glad they are gone. Mom and dad barely
notice strange things coming out of Rees’ belly anymore. We just can wait to kiss and
tickle it.
Rees loved his Valentine cards, bear, dog and baseball.
2/13/2007 Please Give Blood
Happy Birthday Uncle Jeff!
Rees routinely needs blood and platelets to restock from his many blood tests,
especially after surgery. Today we had a little scare.
There is a very big blood shortage right now. When the doctor ordered for a platelet
transfusion, it was delayed because of the protocols during a blood shortage. This
upset us pretty badly. He did get his platelets within an hour or so—after we panicked
and started tracking down donors. However, the blood from anyone who donated today
would have taken 3 days to process and get to Rees. We were told later that we
shouldn’t have worried. (Us not worry? Ha!)
Of course Rees can’t have my crazy blood and he doesn’t have a compatible blood type
to any of our Houston relatives, including dad.
If you are able, please take time to donate your healthy blood. It is the best gift you can
give—and it’s free. It doesn’t matter where you live or if you donate in someone’s
name—it will save a life. The blood banks do a good job of getting blood where it needs
to be. When I had transfusions during pregnancy, I got blood from as far away as Illinois
and Kentucky.
Because there are special tests run on the blood for preemies, there is a little
paperwork to set-up a direct donor account for Rees. We are going to get this done
because of the many requests from friends, then if anyone wants to donate directly to
Rees they can. Rees is B-. If you are B- or O-, Rees can be a recipient. If you are B- or
B+, Rees can receive your platelets. We’ll let you know when the account is ready.
Thank you to Aunt Carrie and Uncle Michael who rallied the B- troops in Waco—we don’t
think they can do transports for direct donors that far away, so tell every one there to
just give to the general blood bank.
2/12/2007 Evening Update
Our SWELL little Reesy had a nice restful day. He brought his nurses and doctors
Reese’s peanut butter hearts for Valentines.
Mom did have to ask at a doctor visiting a neighbor to keep her voice down. Rees hates
noise and responds by sky-rocketing his blood pressure. The nurses were very proud I
fussed at the doctor.
2/11/2007 Evening Update
Rees still recovering from the big surgery. He is very very SWELL. Hopefully the
swelling will stop increasing and start going down soon. We are trying not to wake him
because you can tell he hurts when he moves.
His vitals are now stable in the normal range and he is still tee teeing. This afternoon he
had a record diaper weight—his nurse said it was “enough to swim in.”
Next time you change a child’s diaper, say a prayer of thanks for the things we all take
for granted, and sometimes get annoyed with: poop & pee.
2/11/2007 Morning Update
Amy called the NICU hourly last evening. Early this morning, we found out that Rees has
turned the post op corner. They pumped enough fluids into him that his heart rate
dropped and blood pressure rose. He is already off the dopamine. Rees is also tinkling
like an all star.
Rees is more stable and still "SWELL."
2/10/2007 Evening Update
One day we are praying for poop, the next we are praying for tee tee.
Rees is having trouble with his blood pressure and not wetting his diapers, because his
fluids are seeping from his blood vessels into his tissues (called “3rd spacing”), instead
of getting processed through his kidneys. This is common for preemies after gut
surgery, but an issue that is not taken lightly. They started him on dopamine. He is also
getting very large volumes of fluids into his bloodstream to get his heart rate down and
blood pressure up. As soon as his blood pressure goes up, he should start peaing.
(Mom & grandma even tried the old slumber party trick: one hand in warm water, but no
luck.)
His belly is looking very good post op. He is quite swollen, but his coloring is very good.
He was more alert than we expected today, but you could tell he was in a little pain.
When we tucked him in tonight we turned on his music and he seemed to enjoy it. We
will be calling every hour tonight to see how he is doing. This is stressful, but we are
still elated that his surgery yesterday went so well and that we are headed in the right
direction.
2/9/2007 Successful Belly Surgery
Rees’ belly is fixed! The surgery was better than expected—the surgeons were able to
fix the problem they knew about, plus a couple more that were discovered along the
way.
First, the surgeons were able to put in a double lumen central line, which give the
nurses enough ports to run all of his nutrition, blood and meds without having to start
ivs.
Then they opened up his belly and his insides looked much better than they had
expected. They followed the fistula to the perforation in the small intestine. Then they
found a second perforation close by in the large intestine, which no one knew about. In
between these two bad spots of small and large intestine was the appendix, which was
starting to look sick. With two cuts all of the bad parts were removed and the two ends
reconnected. They also looked at his bladder and confirmed that there was not another
fistula there.
Rees’ belly which had made him deathly ill over the past 3 months is now fixed. The
surgeons do not expect any long-term problems with his belly. We are so thankful to
God and his superb medical team!
Our tough little angel did very well making it through this tough procedure. Rees will be
on morphine for pain for several days. After he feels better and the pain medicine is
stopped, they will work on getting him off of the ventilator and onto cpap. Hopefully it
will be a fairly quick transition, and then onto nasal cannula. He will probably start
eating again in about 10 days. His is also going to be very swollen from the procedure
and extra fluids—but like Dr. Bloss says “Rees is SWELL.”
2/8/2007 Evening Update
This morning Rees’ belly was more inflamed and more poop was coming out of his
fistula than his hiney. The surgeon was called in and the OR booked for 2:30 on Friday.
Rees is scheduled for the big surgery on his belly. The plan is to remove the fistula and
the connected, damaged portion of the intestines. It sounds straight forward, but it is a
very difficult surgery since preemie intestines are very delicate and his are “stuck”
together from his previous infections. The surgeons will also look around for any other
culprits for Rees’ irritated belly.
They had also planned to put in a new central line at the same time, but late today one of
the blood cultures that had been negative showed signs of yeast. We don’t think they
will proceed with the new central line, but will probably still go forward with the belly.
As soon as he gets the new central line, the better. He went through 5 ivs today
because his medicine and nutrition are so tough on his little veins.
This evening, after choking on a little “golitely” (to clear his bowels for surgery), Rees
held his breath, so they had to intubate him. He was going to go back on the ventilator in
the morning before his surgery, so this isn’t a set-back. The good news is that the x-
rays did not show any aspiration in his lungs. When we tucked him in tonight he was
sleeping very well, enjoying the break from the hard work of breathing.
We are praying that God continues to keep Rees tough and guides every move the
doctors make tomorrow.
2/7/2007 Evening Update
Our little angel has had poop in every diaper today. He also seems to be feeling a little
peppier. He is also progressing on several fronts. One of his blood cultures has not
grown yeast in 48 hours, so if it stays clear, he will probably get his new central line on
Sunday. Although central lines are risks of infection, his veins are getting very stressed
with the strong medicine and nutrition constantly running through ivs.
This morning Rees’ doctor said he may need to go back on the ventilator today. Rees
must have overheard the conversion and began taking deeper breaths, because his
following x-ray and blood work showed great improvement. He gets to keep his cpap
for now.
The ultrasound did not reveal anything abnormal or unexpected, so the investigation will
continue to figure out what is going on in Rees’ belly.
Since I’m getting requests for more mommy updates…I had an appointment with my ob
today. She said my cervix was beautiful and totally healed from the ripped cerclage
that held Rees in the last few weeks. In 2006, I had appointments every day from July
to October—it is weird and wonderful to hear the doctor say “we’ll see you back in 12
months.”
2/6/2007 Evening Update - The Scoop on Poop
As some of you saw from our mid-day update, our hundreds of prayers for poop were
answered today at 11:15 a.m., and continued with 5 more poopy diapers in the following
10 hours—a record. Rees’ mommy, daddy, nurses and doctors were all jumping for joy
as word spread through the NICU—I’m not exaggerating. The amount coming from his
fistula has also dramatically lessened.
Now that his intestines are going with the flow, it looks like Rees can avoid the very
serious bowel surgery. They are still planning ultrasounds, CT scans, x-rays for his
belly to see what is going on since it is red and inflamed. We are hoping that there is a
detectable abscess that can easily be located and drained without exploratory surgery.
More good news: Rees’ third weekly follow up eye exam had good results and he has
graduated to getting his eyes examined every two weeks.
2/6/2007 Mid-Day Update
Rees pooped! More than he ever has in his whole life, with a little help from his
surgeon to get things going.
One other amazing thing about Rees' poop. It looks just like breast milk poop (very
seedy) and nothing like formula poop. Everytime a doctor or nurse sees his poop, they
ask me very puzzled if he's had breast milk, knowing that I'm taking chemo and breast
milk is not possible. Even though mom can't breast feed, God is somehow letting Rees'
formula be processed just like he would if he was getting mom's milk.
2/5/2007 Evening Update
Rees is unfortunately back in familiar territory: blood infection, lots of antibiotics, need
to poop, swelling.
The cultures today confirmed yeast in his blood, which dictated the removal of his
central line (this time mom got to watch). Yeast is one of the hardest things to clear
from the blood. Rees will be on anti-fungal medicine for 30 days. Once the infection is
cleared, hopefully early next week, they will consider surgery for a new central line.
Until he gets a new central line they have to start a new iv every day for his lab work and
iv nutrition.
His urine cultures also showed three different infections that are usually found in the
intestines. So once his blood is clear, they will investigate the possibility of a fistula
from his intestines to his bladder.
Rees really needs to poop, preferably from his hiney, but out his belly from his fistula will
do. He has been eating for several days, but nothing has come out the back end. The
feedings so far have helped decrease his direct bilirubin and helped his liver, so we’d
like to continue. The surgeons are still hoping to wait as long as possible before they
have to operate on his belly, and there is still a slight chance they won’t need to.
Mom, dad and Rees’ team of doctors and nurses are still trying to grasp the
combination of complications. We are praying hard that Rees responds quickly to the
antibiotics and POOPS! Luckily, Rees does not look or act sick. He is alert and doing
well on his cpap. Last night he weighed 6 pounds 5 ounces.
2/4/2007 Super Bowl Sunday Post Game Report
Today, Super Bowl Sunday, Rees was decked out in his game day gear thanks to Uncle
Dan in Indianapolis and Uncle Matt in Chicago. Rees picked the winner – he repeatedly
kicked off his Bears socks and did not like listening to the Super Bowl Shuffle. He did
like his Colts outfit, even though it was a bit big, and his blue football Mardi Gras beads
that his doctor brought him back from New Orleans.
After talking to Rees’ surgeon today, we feel a little bit better about the possibility of
loosing Rees’s current central line, which is showing signs of infection.
1. If the current central line is removed, the infection should clear with medications.
(Rees has a fungal infection that feeds on the sugar in the iv nutrition (TPN)—another
reason we want him on real food. The fungal colony usually burrows in the central line
and doesn’t infect the rest of the blood.)
2. Now that Rees is bigger, there are a couple more sites that are possibilities for a
new a central line, instead of just one. There are also less invasive options that they
may try before a fourth central line: pic lines and peripheral ivs.
We are thankful that the quick response of Rees’ doctor on Friday lead to a very early
finding of this infection. We should know more on Monday when the head
microbiologist and infectious disease specialists check things out.
Rees is now 6 pounds 1.4 ounces! He has past Mom’s birth weight of 6 pounds even.
2/3/2007 Evening Update
Late tonight, after a nice, uneventful day, we got a call from Rees’ doctor. The culture
from his central line is showing signs of infection. We are very scared because this
could mean a serious blood infection, and his central line may have to be removed
before they are ready for it come out. He only has one more potential site for a central
line, which he needs for his iv nutrition.
Rees has now gone several weeks without antibiotics and is doing so well. We are
terrified what another infection could mean at this point. Please pray our little angel. He
is fighting so hard.
2/2/2007 Tough Day
Rees gave us quite a scare today, but tonight things seem to be back on track.
Overnight they had to put him on the highest level of oxygen for his nasal cannula and
start him back on caffeine because his oxygen saturation was creeping down and had a
couple of apnea spells. They thought he had grown another fistula from his intestine,
but this time to his bladder, because it looked like his urine had stool in it. He also had a
level in his blood gas (bicarb) come back elevated, which can indicate he may not be
dispelling enough carbon dioxide while breathing on his own.
All of these could be signs of an infection, so they did the complete work up: spinal tap
(this time mom got to watch), urine culture, and several blood cultures from different
sites. We were very scared about his central line.
Then this evening his wonderful surgeon came and took a look. Luckily, the fistula to
the bladder was a false alarm. So far, none of the cultures have come back showing
any sign of infection. Rees is back on cpap and is comfortable catching up on his sleep
from the busy day. Mom and dad (and his nurses and doctor) are worn out too. This
scare after he had been doing so well, was extremely stressful.
Rees is continuing on his feeds. The plan, which of course could change at any minute,
is to get him up to full feeds. At that point he will not need iv nutrition. Then the
surgeons will look at fixing his belly, and be able to use the central line for surgery and
then remove it.
2/1/2007 Evening Update
Rees has a new friend who is interested in tracking his process: Dr. T. Berry Brazelton.
Mom and dad talked to him by telephone today. A mutual friend contacted him to have a
book signed for us, then he asked if we could call him. His unmistakable voice was
strange to hear for the first time personally talking to us. Dr. Brazelton was very
amazed at Rees’ progress. Just think, when he began practicing medicine, there was
no possibility of a baby born as early as Rees to survive.
Big news of the day: Rees had a tiny poop out of his hiney and none from his belly!
Hopefully this trend will continue.
| LoneStarPotts |
Kaitlin with her naked boyfriend!
| Just looking around. |
| I cover my mouth when I yawn |
| GeeGee and I cheered for the Colts and they won! |
| CPAP again! |
| Looking at my mobile |
| Rees with his pacifier. |
| I don't think wearing a Wildcat hat is going to help them win the championship this year! |
| With Mom and Dad. |
| Mom loves the outfit! |