May 2007 - Month 7 in the NICU
5/31/2007 Evening Update
The past two days Rees has been sleeping through the night, from 10:30 p.m. to 6:30
a.m. Since Rees has been doing so well, Mom and Dad are starting to sleep through
the night too, without waking up in panics worried about our precious angel.
Even though Rees had a good night sleep, he slept through his occupational therapy
session today. He never opened his eyes while his therapist moved his arms and
legs all around. I guess he thought she would leave him alone if he kept his eyes
closed. Rees is very funny.
5/30/2007 Happy 7 Month Birthday
Rees received a good report today from his pulmonologist. Rees is doing very well
with his trach and portable ventilator. We also met with a representative from the
home nursing company who will be sending us help to take care of Rees when he
comes home. The company specializes in children, which makes us feel good know
all of the nurses who will be coming want to work with little guys and will know tricks
on how to take care of Rees without the large NICU cast of specialists.
This week, Rees seems more comfortable with the trach and is also paying more
attention to other things besides his tubes. He just started grabbing onto our clothes
when we hold him—another little developmental milestone. We have also done a
pacifier test, to see if we could ever switch from the giant green hospital pacifiers.
Rees has no preference. He is equally obsessed with the multiple store brands and
his traditional hospital bink.
5/29/2007 Evening Update
Grandma Ya Ya is also in training this week. She is starting to help with Rees’
breathing treatments and trach care—very big jobs, and doing great. She is also
helping with explosive diaper clean up. Rees knows how to keep everyone busy.
The only change today is Rees’ morphine went down yesterday and he is doing well.
We hope to be off it completely by next week.
5/28/2007 Evening Update
Rees reached a huge milestone today. His bilirubin has come down to acceptable
levels, so his liver medication Actigall has been stopped.
This evening a neurologist came to explain Rees’ CT scan. Because of his extreme
illnesses when he was born, extremely low blood pressure, struggles with infections,
and extended time on the ventilator, Rees’ head growth has been compromised. All
preemies are expected to show some developmental delays, so we won’t know if his
head growth will manifest into major developmental challenges for months or years
to come. Right now Rees does not show any outward signs of major delays, so we
will be continually praying as hard as we can that Rees will overcome this hurdle as
he has done so many times before.
5/27/2007 Evening Update
An eventful day at the NICU for the Potts clan!
Mom and Dad changed Rees' trachestomy tube for the first time. It was a two person
effort as Mom removed the tube and dad gently inserted a new tube. The procedure
is one that we are scheduled to perform once a month (assuming Rees does not pull
the trach tube out). In addition, Mom and Dad were quizzed on proper trach CPR and
found that we really need to study up before the nursing staff will allow Rees to leave.
This evening Rees had his first "true" bath. Dad filled up the portable baby tub and
Mom washed. Rees enjoyed himself and really liked to kick the water.
5/26/2007 Evening Update
Rees had a good Saturday. His wrist x-rays came back showing that his bones have
built up nicely and no longer has rickets, so he the extra calcium and phosphorus
was discontinued. Rees also graduated from his special ADEK vitamins to regular
infant multivitamins that you can get at any store.
Mom and dad are doing much better with Rees’ trach care. Our time goes down
every night. Tonight what used to take us about 1.5 hours took about 30 minutes.
5/25/2007 Evening Update
In the past when we called to check on Rees there was a long list of stats that we
went through with the nurse: heart rate, blood pressure, oxygen saturation, vent rate
and other vent settings, “Os” (oxygen level for vent), exact descriptions of diapers,
etc. Now when we call, our main question is if Rees is awake or asleep.
The renal ultrasound on results came back clear of kidney stones. We are now
waiting on his wrist films taken on Monday to show the status of his rickets and CT
scan taken on Thursday.
5/24/2007 Evening Update
Rees’ nurses are really putting mom and dad to the test. We now do almost all of his
care tasks while we are there while the nurses supervise. It is a lot of work, but we
don't get to hold Rees until our chores are done. Ya Ya and Pop Pop came to see
Rees today. They loved seeing him free from ivs and pic lines.
Today we had a big meeting of Rees care team to discuss Rees plan for the rest of
his hospital stay and the transition to home. We had a long list of questions for the
large group of doctors, nurses, therapist, social workers, and case managers.
5/23/2007 Evening Update
Rees is making great progress with lowering his bilirubin. Just a couple of weeks
ago his direct bilirubin was 12, this week is 2.9—almost normal range. He still has a
nice coppertone glow, but he no longer looks strikingly orange or yellow. The whites
of his eyes are almost white too!
When Rees' occupational therapist reviewed the report from the developmental
doctor today, her conclusion was that Rees must have been asleep during the
evaluation. Rees is much more advanced than given credit for in the report, e.g.
Rees is notorious for his strong grasp and nimble fingers.
Today mom and dad went on our first visit to Rees’ pediatrician’s office. When we
drove up, it seemed familiar. It is actually the same office building I went when I was
a little girl.
5/22/2007 Evening Update
Today, Rees had a follow up EKG for his heart and an ultrasound of his kidneys. The
EKG showed that he has no damage to his heart for being on the ventilator for so
long, which is sometimes a problem with preemies. It also confirmed that the blood
clot in his right atrium is still hanging around. He had a six week course of antibiotics
that cleared the clot of infection and the clot is not expected to cause any problems.
The ultrasound on his kidneys was to check for kidney stones. The TPN that Rees
was on for so long can cause stones to form. We'll know the results for that test
soon.
Rees also saw a doctor who is a developmental specialist to get a baseline report of
his development. As expected for being a micro preemie who has been sick and in
bed for so long, he is a little behind for his gestational age. Mom and dad are
confident Rees will catch up before too long.
Mom was very excited today to finally get her first dose of Procrit to help with the
anemia caused by the chemo pill Gleevec. I passed the test at the doctors office for
giving the shots to myself, so I can now do the weekly doses at home. I can't wait for
it to kick in, so I'll have plenty of red blood cells and more energy.
5/21/2007 Evening Update
Mom and dad continue with their care training for Rees. Tonight we had Trach CPR,
which we hope we never have to use, but because of Rees’ history of bronchial
spasms, a.k.a. “clapping down,” we need to be at the top of our game.
Rees is continuing to do well on his portable vent and NJ feedings. This week our
goal is to wean Rees from his morphine dose. He came down a little last week, but
cannot handle too large of a reduction at once.
5/20/2007 Evening Update
Rees had a nice lazy day. He spent time in his boppy, bouncy seat and dad’s lap.
Rees has a busy week ahead of him. He is doing many of the follow-up tests (ekg,
ultrsounds, etc.) that need to be signed-off on before he can go home. Mom and dad
have a busy week too. We are starting our intensive training for Rees’ special care
needs and meeting with several doctors who will be following him after discharge. It
looks like Rees is on target to come home by Father’s Day.
5/19/2007 Evening Update
Mom and dad made our first big shopping trip for baby gear today. Even though it is
still several weeks away. We want to get everything ready for Rees at home and not
wait until the last minute. Am I the first mom ever who cried tears of joy when we put
the big box of diapers in the shopping cart? I just can’t believe we really do get to
take Rees home one day.
Rees is now 12 pounds 6 ounces. He received his six-month shots today, which
made him very mad. They were postponed a little because they didn’t want him to get
them on a busy day. In this 24 hours Rees had no spit ups. Yippee.
Dad put new pics on the website. If you click on the picture, it will open another
window with bigger pictures so you can see Reesy’s chubby cheeks even larger.
5/18/2007 Evening Update
In one day Rees has gone to a more simplistic lifestyle: no more TPN (iv nutrition), no
more antibiotics, no more iv meds, pic line and arm board are gone, and discontinued
additives to his formula,
In the past 24 hours since he got his NJ tube, Rees has only spit up once—a huge
improvement. Rees switched to his portable ventilator this evening and so far is
doing very well.
5/17/2007 Rees ate applesauce & cereal today!
Rees ate applesauce and cereal today! He had a swallow function study to make
sure that if he ate big boy food it would not go down the wrong way, which could be a
serious problem with the trach an a more likely problem since one of his vocal cords
is not functioning. He passed the test surprising everyone with how well he did being
tested on such a big task with no prior experience. He preferred the sweet fruit to
the cereal and did not hesitate to eat from a spoon.
He will not start eating food for nutrition quite yet, but will probably eat small amounts
therapeutically. Many preemies who do not get to eat for a while because they are on
feeding tubes develop food aversions and take a long time to accept food in their
mouths, even when their tummies are ready for it.
The other big treat for the day was that we saw Rees with no tape or tubes on his
precious face. The only other time we’ve seen his face free of this was right after
surgery when he was paralyzed and swollen. Today, Rees was wide-awake and
playing.
Rees actually did the honors. He pulled his OD feeding tube out all by himself. He
didn’t want to wait for his nurse. Dad had to help him remove the cheek pads, even
though this is something else Rees can do by himself, since dad was in a rush to take
as many pictures as possible before Rees went down for the swallow study. After
his feast, Rees got his new NJ feeding tube that goes in his nose. It is taped to his
cheeks like the other tubes, but now we can see his sweet mouth and more of his
facial expressions.
Another big event was that his portable ventilator arrived today. He will probably
transition to it tomorrow. This is the vent that he will come home with.
5/16/2007 Happy Birthday Cousin Nick (Belated)
Rees has had so many busy days that Mom and Dad have not been able to keep up
with birthday greetings. While looking over last week's calendar we noticed that we
did not wish Rees' cousin Nick Rosebraugh a happy birthday! Happy Birthday Nick!
Sorry it took so long for us to post.
Rees had a quiet day today which is a good thing because tomorrow promises to be a
very active day. Rees will have his swallow study and receive his j-tube.
Our hope is that the swallow study will indicate that Rees may begin to eat solid food
(rice cereal) and that the j-tube will stop his spit ups. If all goes well Rees will be one
step closer to coming home.
This evening mom and dad spent time with the parents of a NICU graduate who had a
trach. We learned what to expect when Rees comes home and many valuable tips
that will keep him healthy. We were very encouraged to meet their very healthy nine
year old NICU/trach graduate. Thanks for all of your help!
5/15/2007 Evening Update
Today's swallow study was delayed until Thursday. Rees is waiting for his J-Tube
which will replace his current OD tube. The staff does not want Rees to make
multiple trips to Radiology so he will have the swallow study and receive the J-Tube
all at once on Thursday.
Nefertari RN reported that Mom did a great job with Rees' trach care this evening.
When mom walked into Rees' pod tonight to report for duty, she saw Rees on the
floor in his bouncy seat surrounded by orange construction cones. Dad bought the
cones because mom was too scared for him to be out on the floor in case someone
didn't see him there and stepped on him. All the nurses came by to see our "man at
work."
One of Rees' biggest supporters started a new job today. Congratulations Ershel!
Rees' Cousin Kay in Beaumont raised over $5000 in Rees' name for March of Dimes
with her crew at Macy's in Beaumont. Rees and his buddies send a great big thank
you!
5/14/2007 Evening Update
Rees had a quiet day today. He rested in anticipation of more tests tomorrow.
On Tuesday, Rees is making another trip to Radiology so he can be monitored as he
is fed solid food during his swallow test. Dad had a good time buying Rees rice
cereal and apple sauce.
5/13/2007 First Mother's Day
Mom had a nice first mother’s day. Rees' nurse helped him make a sweet mother's
day card for me with his footprints on the inside. I went to see Rees early this
morning with dad to hold my sweet angel. Then Rees sat in his bouncy chair so Ya
Ya and Pop Pop could play with him on the floor—Rees even stayed awake for his
play date.
Now during our evening visits with Rees, we have little time to relax and hold him.
Mom and dad have lots of duties that take up most of our visit. The nurses are
making us do all of the work so we’ll be prepared and comfortable with all of the
procedures when Rees comes home.
5/12/2007 Congrats on Graduation Aunt Mary
Last night when we called to check on Rees, he just had another scary episode of not
breathing, or “clamping down,” from bronchial spasms. They have changed his
breathing treatment medication in hopes he has fewer of these episodes.
Today Rees rested after his busy day yesterday. His Ya Ya and Pop Pop came to
town just to play with Rees in his bouncy seat, but his diaper exploded in his bouncy
seat last night and it was in the wash today. Their play date is rescheduled for
tomorrow.
Tonight mom and dad attended the Woman’s Hospital annual NICU Reunion. It was so
great to see our first set of NICU friends: Malik, Cade, Aaron, Adam, Grant, Addison,
Annabel, Annette, Luke and Greer. All of Rees’ friends looked remarkably well. We
are immensely happy we got to see them. We also met new friends that had a baby
with a trach that will be great resources in planning for Rees to come home—their
daughter is now 8 years old.
5/11/2007 Evening Update
After loosing his pic line (non-surgical, long-term iv access) last night, Rees still
needs one more week of antibiotics. After much debate among the doctors and
nurses weighing the pros and cons of trying to get a new pic line, mom and dad gave
consent for a one-time-only attempt. We didn’t want to have Rees go through what
he did the last time with day after day of attempts. If it failed we would have to play
the daily iv game. After a morning of solid prayer, we had another pic-line miracle.
His nurse practitioners got it. Each attempt takes about an hour, so it is an agonizing
wait, but ends joyfully when it is successful.
Another big milestone today is that Rees is off TPN (iv nutrition) and on full feeds.
(This is why peripheral ivs were an option, instead of a pic line for antibiotics.)
To make progress on his feedings with non-surgical options, last night Rees was
given pedialyte through an OG (oral gastric) tube, which runs from his mouth to his
stomach. This attempt ended with massive reflux.
Right now Rees is continuing with his feedings with an OD (oral duodenum) tube,
which is not an option for home. Today an NJ (nasal jejunum) tube was ordered and
should be here by Monday. This tube goes in his nose and deeper into the intestine.
With the tube going in his nose, Rees will finally have his mouth free of tubes.
Feeding through the nose probably sounds weird, but is the most common feeding
tube for babies at home—our ultimate goal.
Our treat for the day was Rees’ first time to play on the floor. He now has his own mat
that we cover with blankets and give him tummy time and new perspective of his
NICU world. He started off using his boppy pillow to prop up. He was so comfortable
that he preferred sleeping, which his therapist said was a good sign since many
babies are uncomfortable and upset their first time on the floor. He did wake up
when dad talked to him, and even picked up his head.
We reluctantly celebrated today. Rees’ girlfriend Sophia, whose family is now
considered our close family, graduated and moved to NICU Level 2 for cruising along
with her breathing and eating. She is taking a big step towards going home soon.
We are so going to miss seeing her every day.
5/10/2007 Evening Update
Rees had an extremely busy day today!
His tummy surgery scheduled for Monday, May 21st was moved up to Wednesday,
May 16th. The planned surgery called for two surgeons to participate and the 16th
was a day that fit for both. Later, Rees' GI doctor came for a visit and called all
surgery off! Hurray for Rees! She believes that surgery will cause more problems in
the long run and she is inclined to let him grow out of this spit up phase.
Rees had a field trip around lunchtime. His neo's sent him down to Radiology for a
VCUG - basically and ultra sound of his bladder. The ultrasound showed that all is in
working order.
Last time he went to Radiology the radiologist decided that Rees was hernia free.
Unfortunately, they found one this time around so that is something that will have to
be taken care of in the future.
Unfortunately, our evening visit did not get off on the right foot. After being buzzed in
for our visit we found Rees' nurse waiting to talk to us. Right off the bat we knew she
had bad news for us. Rees' pic line became dislodged sometime during the day and
was removed this evening. Because he is not up to full feeds and is on antibiotics, an
IV or another pic line is needed.
An IV was inserted today and they will try a pic line tomorrow.
Please pray for success.
Lastly, dad got to participate in the trach care! Under the careful guidance of
Nefertari RN, dad suctioned secretions (mucus) out of Rees' chest via the trach tube.
He cleaned around the stoma with hydrogen peroxide and sterile water. Lastly, Dad
placed a special piece of gauze underneath the track tube.
5/9/2007 Evening Update
All three of us got to play on the floor today with Rees in his bouncy seat. Rees is
such a big boy. He loves it when dad holds him up in all different positions so he can
see new things.
Mom suctioned Rees’ trach for the first time tonight and did a pretty good job. For
babies on the ventilator, mucus can build up in the et or trach tube, so it routinely is
suctioned to keep the breathing tube from clogging.
The operating room is booked for Rees on May 21 for his feeding solution surgery.
The exact type of procedure is still being discussed.
5/8/2007 Evening Update
Mom got to play with Rees on the floor today. It was a great change from our usual
routine. Rees was in his bouncy seat and mom got to sit and play with him. Then his
occupational therapist came and worked with him. She was very impressed with his
“self soothing” (aka sucking his thumb) and very very impressed with his “head
control.” He sat holding his head up on his own for 15 minutes. She thought it was
an amazing feat for a little guy recovering from trach surgery who has been on
lengthy bed rest.
Today we found out that Rees will need one more surgery before he can come home.
We aren’t sure exactly what it will be yet, but it will be something that will help him
eat. His GI specialist, surgeons and docs are going over several different options and
will hopefully have a plan by the end of the week The preferred feeding method for
babies with trachs is not an option for Rees since he is has an enlarged liver and
adhesions and scar tissue from his prior abdominal surgeries. Just like the trach,
whatever feeding mechanism they decide will only be only be temporary. He needs a
little help until his motility in his intestines picks up speed and his reflux settles
down.
5/7/2007 Evening Update
Today Rees got to sit in a bouncy seat. We heard he did very well. Mom and dad
haven’t witnessed this in person, so we are anxious to see how he looks outside his
crib.
Rees has discovered his thumb. Last week, if a nurse’s hand was ever near his
mouth working on his trach, Rees would suck on her hand. For the past few days he
has been sucking on his hand, but yesterday he finally got his thumb in his mouth.
What a treat! Now he gets very frustrated if he doesn’t get his thumb in on the first
try.
Ya Ya, Pop Pop, Aunt Carrie, mom and dad went to our family Trach Care class this
morning. We were trained on all of the procedures we will be doing at home. Don’t
worry we practiced on a doll, not on Rees. We all did very well on the doll, who did not
squirm or fight. We will now start doing these procedures for Rees in the hospital, so
we will be comfortable when we are home.
5/6/2007 Evening Update
Ya Ya, Pop Pop and Aunt Carrie all got to hold Reesy today. It was Pop Pop’s first time
since Christmas—a totally different experience holding a 12 pound baby than a 3
pound baby. It was Carrie’s first time. She was very surprised she got a turn.
More surprises today. Mark organized a surprise party for my remission. Our close
friends and family who helped us during our tough pregnancy were there. All three of
my doctors at St. Luke’s who managed my pheresis treatments were there too. It
was so great to see everyone to thank them for all they did to get us to where we are
today.
5/5/2007 Evening Update
Rees once again went down on his ventilator settings and up on his feeds. Tonight he
started spitting up, so they went back down on the volume of his food.
Today Rees had three visitors: Ya Ya, Pop Pop and Aunt Carrie. They are all in town to
go to our family trach training on Monday. Cousins Camryn and Thomas came to
Houston too. They brought mom the best remission present: a sterling silver bracelet
inscribed “I can do all things through Christ who strengthens me”—the same
inscription as the pink Amy bracelets that my family and friend wore to support me
during this tough year.
5/4/2007 Evening Update
Rees has become even more dexterous the past couple of days. He can now pull and
untie the strings holding his trach tubes in place. There are several ways to
dismantle the equipment and he has figured out all of them.
His cultures from his latest intestinal bug are already coming back negative. Rees
will continue this round of antibiotics for about one more week. Then he’ll have just a
few more days of antibiotics for his blood clot.
We are now back to getting him back up to full feeds and off TPN. Now that Rees is
doing so well breathing with the trach, his feedings are the only thing holding him
back.
5/3/2007 Evening Update
Mystery solved. Rees has developed a bug in his intestines caused from being on
antibiotics for so long. He now has a 10-day treatment with new antibiotics to kill
these bugs. He is started back on his feeds again, but a very low volume.
Rees is now breathing completely on his own. The ventilator is only supplying
“pressure support” for each breath he takes.
This week Rees is doing something he has never done before: close his mouth.
When we saw him with his mouth closed, we couldn’t figure out why he looked so
different. Then it hit us. When he had the breathing tube or the cpap contraptions, he
couldn’t close his mouth. Rees is also smiling much more. He now has tape on his
checks to hold his feeding tube in place, but he still manages to grin.
5/2/2007 Evening Update
Things didn’t go according to plan today. Instead of getting back to full feeds and off
TPN, Rees is off his feeds and on full TPN. Last night and this morning he had
“watery stools.” There are numerous variables that could cause this, so the lab is
running a few tests now to help understand the cause. The docs want avoid
dehydration, so the feeds were stopped for now. Hopefully tomorrow we’ll know a
little more and the docs can get Rees back on track with his food. Of all of our time
praying for poop, I never thought we would be getting so specific in the description.
We are now praying for firm poop.
Rees had his first session with the occupational therapist today since his surgery.
He did a very good job holding his head up while in a sitting position. He scored high
on his range-of-motion exercises too.
5/1/2007 Evening Update
For the past two days Rees has been on “room air,’ meaning that his ventilator is set
to 21% oxygen—just what we breathe. His settings are very low too. He is only
getting 5 out of 30-50 breaths per minute by the vent. Soon he will only be left with
“pressure support,” which gives him an extended boost with each breath he takes
on his own. Pressure support is what is required to keep his flimsy bronchial tubes
open to breathe effectively.
Rees had an echo cardiogram on Monday to check on the blood clot in his heart. The
test was inconclusive, so the infectious disease doctor is keeping him on antibiotics
for two more weeks as precaution against any bugs potentially hiding in the clot.
Rees did better with keeping his food down today. He didn’t spit up on mom or dad
during our holding time. Tomorrow, if all goes according to plan, Rees will be back up
to full feeds and off the TPN (iv nutrition).
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