November 2006 - Month 1 in the NICU
11/30/2006 Very Happy One Month Birthday
Mark and I have been crying spontaneous tears of joy for the last 4 hours. Hallelujah!
Our little angel is truly one of the toughest guys around. We are so thankful that God
gives Rees the strength every day to overcome a multitude of obstacles.
This morning the doctors decided that Rees needed very invasive exploratory surgery in
his belly to try to find the cause of his swelling. This was last resort after dozens of x-
rays, ultrasounds and other tests showed no culprit.
Two of the surgeons, who unfortunately know Rees very well know, started the
procedure at 6 pm. At 7 pm, they returned with the best possible scenario. As soon as
they opened his belly, they found the source of his illness: an abscess. They told us it
may be 48 hours until he would recover from the anesthesia and open his eyes, but
when we went back to see him, his beautiful eyes were wide-open.
Rees had a perforation in his intestines that healed itself on its own creating the
abscess (a hardened area of the intestines). When the intestines tore, bacteria
escaped and began to fester creating the large volume of fluid that was swelling his
abdomen. The only way to stop the bacteria is draining all of the fluid and cleaning out
his belly with an antibiotic wash.
Rees now has two drains, one on each end of his 3-inch incision on his belly. For the
next week or so more fluid will empty from his belly. He didn’t have enough intestines to
spare now, so in a few months after he grows they will go back and remove this
damaged portion.
It will probably be a slow process to get back his feedings back on track, but the fact
that his plumbing was still working despite this trauma to his intestines means he may
tolerate food sooner rather than later.
Our next hurdle is clearing the infection from his central line. It seems to be a
conundrum: (a) the infection is imbedded in the tubing of the central line, so it needs to
come out; (b) he needs the central line for the antibiotics (and many other life-giving
fluids) to clear the infection from the bloodstream; (c) he only has 2 possible sites left
for central lines. If you take out the infected central line and put in a new one, the new
central line may be infected from his blood repeating the initial problem, leaving one last
possible site.
Thank you all for your thoughts and prayers for our tough little Rees.
11/29/2006 Amy & Rees Update
I guess you can tell whose health is my primary focus right now, but I’ve gotten lots of
requests for an Amy update, so here goes…
I am really doing well. I had a blood count today and it looks like I am responding very
well to the CML miracle pill Gleevec. The doctor is keeping me at a fairly low dose. My
stomach was not very happy for the first couple of weeks on the Gleevec, but I’ve
adjusted the times I take it and have had no problems the past couple of weeks. My
stomach also took a little time adjusting to normal food. I had such bad morning
sickness that I was almost completely off meat and felt like I was force-feeding myself
non-meat protein: mostly Ensure (which I psyched myself into thinking was good),
yogurt, cheese and milk. While drugged and on bed rest my diet was even more limited,
so it took a few weeks to get used to regular food. I did eat hamburgers for almost
every meal for the first few days after delivery to try to make up for it. My legs are much
better. I walk normally, but get worn out very quickly if I do too much. Hopefully by
Christmas my stamina will be better. The main bummer is that I am still getting itching
attacks—they mysteriously went away while I was in the hospital and came back a
couple of weeks ago.
Rees’ swelling has greatly reduced today. His head is just about back to normal. It is so
good to see his sweet face. His arms and legs are starting to squirm around a little
more and he is going back to his old habits of playing with his wires. He is keeping his
eyes open more than ever and sometimes gets irritated when they cover his eyes. He
must be seeing more and more contrast. His belly is still quite swollen. It will hopefully
go down more tonight. The doctors really need to do a spinal tap, but there is too much
swelling to get him in the right position.
A pediatric infectious disease specialist from Tx Children’s has seen Rees every day
this week. They have been researching possible treatments for the infection in his
catheter and have decided on a new antibiotic that he will start in the morning. Right
now the infection is actually only in the catheter tubing and has not moved into his
blood. Since he is too unstable right now to take out the catheter, wait a few days and
put in another one, they need to try to treat the infection in the catheter and buy some
time.
11/28/2006 Happy Birthday Daddy
Today is Mark’s birthday and one of his presents was a tiny poopy diaper from Rees.
This is great news because it had been over a week since the last one. When your body
is focusing on other functions that are not doing so well, your bowels are the first thing
to shut down to allow more blood flow and energy to the more important functions. So
this was a very big improvement.
Rees is still improving on his respiration—he is requiring about 70% of the help he
needed a few days ago. His heart is still pumping strong on his own.
All of these improvements make the doctors think the worst of his infections have past.
We now need to get the infections completely out of his system. After he shows
smaller levels of infection and his swelling goes down some more, they will take out this
infected central line. We hope this will be towards the end of the week.
This morning the mass at our church Sacred Heart Co-Cathedral was dedicated to Rees
and me. It was a great start to the day. We are so thankful we had close family and
friends there with us.
11/27/2006 Evening Update
Rees has gone 24 hours with no blood pressure medicine! They are also reducing his
oxygen and ventilator settings and he is tolerating it well. Now that he has been off the
paralyzing medicine for a day, he is starting to wiggle his arms and legs like his old self.
His swelling is starting to go down, so he looks much better too.
An infectious disease specialist from Tx Children’s saw him today. The conclusion is
that he will definitely need his catheter replaced because the bacteria from the latest
infection can imbed in the catheter tubing. The current catheter cannot be removed
until he has been stable for a couple of days and his swelling goes down a little more.
They will wait a few days before his 3rd catheter can be inserted. In the meantime, he
will have several temporary IVs. There are only 4 possible sites for central lines, this
next one will be his 3rd, so we are praying very hard that he can go quite a while without
needing to use the final spot. Once he gets bigger, there may be more options with pic
lines.
11/26/2006 Afternoon Update
Two steps forward…One step back. Rees had a good night, but then this morning he
wasn’t doing as well. Later, the lab confirmed that he did have another infection. This
one is in his new central line. In the next few days they are going to try to treat the
infection without removing the line. But they may end up having to remove it, which will
mean he would have to get his 3rd central line a few days later. Looks like this will be
another touchy week.
Because their immune systems are not yet fully functioning, preemies can get serious
infections very easily, even from the normal bacteria that grows on the skin—bacteria
that we all have and never notice. Luckily our doctors and nurses are monitoring Rees
very closely and have caught everything at a very early stage.
On the bright side, Rees’ blood pressure, heart rate and respiration are much better and
they are reducing his sedation and heart meds.
Love, Amy & Mark
11/25/2006 Evening Update
Our little man is finally starting to make some good progress towards getting rid of this
infection!
When Amy and I left NICU last evening Rees's doctor was preparing to give him a
"booster" shot of steroids. The thinking was that the dose would give Rees's body the
energy to raise it's blood pressure and force more #1. It worked - we called to check on
him around midnight and found that his blood pressure had risen from 15 to 35. Not only
that but he made his dad proud with the copious amount of urine output!
Unfortunately, mom and dad went to bed knowing that the next morning Rees's doctors
would get serious about finding the source of all the trouble and that Rees might have to
have surgery once again.
We called to check in on Rees first thing this morning we called and were told that he
had a wonderful night! Blood pressure was good, heart rate was good and urine output
was outstanding. Good news!
After breakfast, we went to the NICU and were told that fluid had been pulled from
Rees's perineal cavity and that it was clear of anything that would indicate a ruptured
intestine. Later this morning, an abdominal ultra sound was preformed and the
radiologist detected something (no one knows what - it could have just been a funny
image caused by the excess fluid) odd. One of Rees's surgeon's was called in and he
inserted a drainage tube in Rees's abdomen to help clear out the fluid. It worked!
Rees is feeling and looking fantastic! The swelling has started to subside and his
caregivers are beginning to ween him from the medications that have been keeping him
going.
Lately, we have been giving Rees daily goals. Tomorrow's goal (Sunday) is for him to
ween completely off all of the blood pressure medications, ween off all the sedatives
and open his eyes for mom and dad. It is a goal that he can achieve!
Once again, thanks to everyone for all of the thoughts and prayers.
Love to all,
Amy, Mark and Rees
November 18 - 24
11/24/2006 Happy Anniversary Aunt Rebecca &
Uncle Randy
We hope everyone had a happy Thanksgiving. We did enjoy a feast in-between visits to
see Rees.
Rees was making improvements fighting his infection and bettering his respiration, but
yesterday he stopped making progress. The doctors suspect that he may have a new
infection or that he may have a rupture in his intestines, which is fairly common with
preemies. We may know more tomorrow. If a new infection is confirmed he will
continue on his antibiotics. If the test for an intestinal tear indicates there may be a
problem, they will probably operate fairly quickly.
Right now Rees is very swollen (due to numerous factors) and he is highly sedated (also
for numerous reasons), but he still opens his eyes when Mommy and Daddy get there
and tell him hello, which is very comforting.
Please say an extra prayer for our tough little angel to stay strong through this critical
time.
11/22/2006 Evening Update
Since his test today showed no more signs of infection in his blood, Rees got a brand-
new central line this evening. This time, instead of the usual insertion near the neck, the
surgeon went through his leg. This line is a double lumen (for the medically inclined)
which is better because they can pump more than one thing in him at one time. He was
too small a couple of weeks ago when they put in the original line, so he only had one
lumen, which meant he still had to get extra IVs. This evening he went from 5 IVs (in
both arms and legs and the top of the head) to a central line (how they put meds and
fluids into his blood through a vein) and one “art line” (how they draw blood for tests
from an artery). This will save him from being poked with needles numerous times
throughout the day.
Rees’ entire body is very very swollen due to several factors (infection, extra IV fluids).
He looks very pudgy right now--the only part that is the normal size is his tiny nose. His
doctor said that tomorrow the antibiotics should really kick in and that the swelling may
start going down he’ll start doing better. Since the original infection was found and
antibiotics were started, all repeated blood tests for infections have been negative.
Sometime next week when he is feeling much better, he will have a spinal tap to make
sure that the infection didn’t spread elsewhere.
Have a happy Thanksgiving tomorrow. Mark is cooking our feast. He didn’t like my idea
of going to a restaurant or picking up Luby’s.
11/22/2006 Morning Update
This is the third day Rees has been on the antibiotics, so the doctors say we should
start seeing improvements. So far he has been doing as expected and his repeat blood
cultures show no more signs of infections.
Safe travels to everyone hitting the roads today, Amy
11/20/2006 Happy Birthday Uncle Adam
Today, Monday, November 20th is Rees’ 3 week birthday as well as Uncle Adam Potts
26th (or so) birthday.
Last week one of Rees’ many doctors explained to us that there are three areas where
Rees has made and needs to continue to make improvement:
1. He needs to breathe.
2. He needs to eat.
3. He needs to grow.
Each area is dependent upon the other and each is equally important so if one takes a
hit the other two suffer. For example, if he has trouble feeding - his growth will slow and
his lungs will not develop.
Typically, the main worry with premature babies is that their immune system is very
weak or does not exist. If a baby contracts a virus or bacteria, steps (medications) are
taken to help the baby fight the infection but growth, lung development and gastro
intestinal development all suffer.
Unfortunately, Rees’ care providers found an infection in his central line and it was
removed last night. He is taking antibiotics and we are praying that the medications are
able to fight off the infection. His breathing, eating and growth are all at a standstill at
the moment. If all goes well next week they can put a new central line in and start him
back on his feedings, which he was doing so well on.
What scares Mom and Dad the most is the fact that his lungs (after doing so well last
week) have deteriorated and he has a massive build up of CO2. To vent this excess CO2
the doctors were forced to sedate Rees and are relying entirely on the ventilator.
On a good note, many great things happened last week. Rees did breathe on his own
(with the aid of a C-Pap), he did eat and he even gained some weight! Our hope is that
once the antibiotics really kick in, Rees will be able to continue where he left off.
In addition, Amy has started her chemotherapy and has had few side effects! She was
back to her old self last week MC-ing the latest Museum Cultural Feast.
Please continue to keep Rees, his care providers and his fellow premature neighbors in
your thoughts and prayers. Thanks to everyone for all the support!
Love to all,
Mark, Amy and Rees
November 10 - 17
11/17/2006 Happy Birthday Aunt Carrie
I am still recovering from my late night on Wednesday. I could barely move the next
morning my legs were so sore and I was exhausted.
Rees did better than expected on the cpap—he stayed on for about 18 hours before he
tuckered out. He went back on the ventilator on Thursday morning and did better than
he has ever done. So exercising his lungs did him a lot of good. They will probably get
him to try the cpap again next week.
Rees is still doing well on his food and is now up to 3 ccs each feeding. He has also
gained weight. He is now at 1 lb, 4.6 oz—a full oz over his birth weight, so we are now
moving forward.
Mommy had a big job last night. I got to give Rees a bath. Dad got to watch. It was the
first time we saw him totally in his birthday suit (no hat or diaper). I was very nervous.
The nurse had me start with his tiny eyes to get the tiny flakes of sleep off. With the
most delicate part first, the rest was a breeze.
11/15/2006 Evening Update
I am writing this at 1 a.m. We had a very busy day with lots of good things to note. This
morning I got the results of my bone marrow biopsy. I had no change of any of the tests
since the original blood tests in June, so our untraditional CML management during
pregnancy did not cause any problems.
Next Rees had a huge milestone. They removed his breathing tube that was hooked to
the ventilator and replaced it with a cpap. Now he has tubes blowing air in his nose and
he is taking all of the breaths on his own. This is much earlier than expected since he is
still recovering from pneumonia. The nurse told us that 75-99% of the time, the first time
babies are on cpap they either immediately have to go back on the ventilator or they last
a day or two before they get too tired to breath any longer on their own. So, we were
going to be happy with just 10 minutes. Any amount is good exercise for his lungs and
at least an introduction to a new way to breath. As of this report, little Rees has been
taking his own breaths for 11 hours. The doctor sent me home at 12:45 and told
mommy and grandma to get some rest.
The other reason I’m out past curfew is that I went to work tonight. I had a big museum
dinner celebrating Ben Franklin that I worked on while I was working from home. Since
Rees was doing so well, Mark and I went to our first museum event since June!
Good night, A
11/14/2006 Evening Update
Last night we went to see Rees and the nurse had just given him a bath. We were
totally shocked. It wasn’t too many days ago that the doctor said his skin was so fragile
that it was breaking down and may soon be at risk of infection. What a change—now
his skin has grown and improved so much that he can be gently scrubbed.
This morning we had more great news. They doubled his formula to 2 ccs. He had a
pacifier in his mouth (about as thick as a pencil) that was still a bit too big. He could
barely hold the tip in his mouth. They are giving his pacifier when he eats so that he can
start to associate sucking with a full tummy.
His breathing is doing much better today too. He is taking many new medicines in
preparation to possibly take him off the intubation respirator (breathing tube that pumps
air into his lungs) and try him on a cpap (gently blows air into his nose, but baby takes
breaths on his own). Usually the first time off the breathing tube, especially after
pneumonia, only lasts a very short while, but they have to start giving him a chance to
breath on his own. This is weeks earlier than planned.
We ran into the neonatologist that gave us the 2-hour consult the week before Rees
was born. He told us that we need to start filtering the technical info from the nurses.
Since it is going to be a long roller coaster of small ups and downs that will hopefully
end up with a higher average of ups, we shouldn’t concern ourselves too much will the
minute-by-minute or day-to-day details of his respirator settings, blood pressure,
antibiotics, etc—those are all things that can be controlled. He said our main concern is
his growth. He needs to gain 3-6 oz a week. So…I will try to filter this info to family and
friends too.
11/13/2006 Evening Update
Today is Rees’ 2 week birthday! The next big milestone after the 48-hour mark.
We had a very good weekend Rees has both eyes opened wide. They have been
sedating him a little so he doesn’t use up all of his energy and oxygen wiggling, grabbing
and kicking, but he still squirms a little and opens his eyes when mommy and daddy talk
to him.
Rees is still recovering from pneumonia, so it will be several more weeks before he can
go off of the ventilator. He really needs to start growing so that new healthy tissue can
grow in his lungs…so he is starting to “eat.” He is receiving 1 cc of formula every 3
hours in his feeding tube. This tiny amount does not give him much nourishment, but it
is preparing his tummy, which was not supposed to be digesting food for several more
months, for bigger meals. So far he is doing very well with the feedings. This morning
mommy feed Ress, meaning that I held the syringe with the formula until it all dripped
into his tummy. He is still receiving nutrients and fats through an iv.
The other tricky thing right now is keeping the ventilator settings just right. Sometimes
it is quite a battle with settings needing to be changed minute by minute, but sometimes
he goes long stretches of time without machines beeping. When he comes home, we’ll
probably have to have fire truck sounds in his bedroom instead of lullaby music to get
him to go to sleep.
They weighed Rees this weekend. Most babies loose 10-20% of their body weight after
birth, so we were trying to prepare ourselves if they told us he was down to 1 lb.
Fortunately he only lost 10%, so he is right at 1 lb, 2 oz.
Our schedule right now is to call at 5:30 am to check on him, then Mark goes to see him
at 6 before the night nurse leaves. Then Amy goes about 8 or 9 to meet the day nurse
and get the morning report from the doctor and then go back in the afternoon. We both
go early evening to get the day nurse’s report and then late evening to meet the night
nurse and say goodnight. Of course we also call when we go to bed and any time we
wake up in the night. We can visit at any time with the exception of four one-hour shift
changes throughout the day. We are so lucky to be so close. I can also bring my laptop
with me and get online in the waiting room if I don’t want to go back and forth when we
are waiting for a test or procedure. (I’ve also brought a pillow if I just need a nap.)
November 4 - 9
11/09/2006 Evening Update
Rees had a great day today. Tonight he opened his eyes a sliver. His first peek was at
mommy and daddy. Yippee, we timed our visit for the perfect moment. He should be
wide-eyed over the next few days. The nurses were also adjusting his breathing tube
and we saw his face for the first time without tape. Perfect! Not sure if I’ve mentioned
before, but he has fine dark hair under his little hat.
Rees’ labs reported no other sign of infection, so the pneumonia is isolated in his lungs
and it should clear up in about a week with antibiotics. All of his umbilical cord lines are
removed. They have been able to go down on his oxygen, so he is making a little
progress towards removing his breathing tube.
Mommy update: This morning I had a bone marrow biopsy to get a baseline report as I
begin taking Gleevec, the CML miracle drug. My blood counts are still good, so I am
starting at the lowest dose (one pill, once a day). The biopsy did hurt, but only for a bit.
They gave me a dose of Demerol and I couldn’t keep my eyes open when I went to see
Rees. Then I slept for 5 hours.
11/08/2006 Afternoon Update
Rees had a brain scan this morning and the doctors reported that everything is normal!
This is especially good news because in the first 10 days of life one of the biggest fears
is of "brain bleeds" (basically an aneurysm) caused by weak blood vessels and erratic
blood pressure.
Because of Rees's high activity level, lack of paralysis and normal blood pressure we
were fairly certain that the scan would go well but it is a big relief none the less.
In addition, Rees had a spinal tap this afternoon and the drawn fluid was clear. This is
good news as well because last week's tap was mostly blood and blood in spinal fluid is
a bad signal. In our case, it meant that the person performing the tap missed the spine
and drew blood. The procedure is a pretty common experience for premature babies.
The little man was diagnosed with pneumonia last night and is recovering nicely.
Spirits are very high!
Thanks for all of the thoughts and prayers. Please keep sending them our way.
Love you all,
Mark and Amy
11/07/2006 Update
The surgeon just came out. Rees has his new catheter and the surgery went well. It is
a very miniture version of what mommy had throughout the pregnancy--not exactly how
I wanted him to follow in my footsteps.
He also has a new outfit today. One of the nurses knitted him a new hat. It is pretty big,
but very stylish: fall colored argyle design.
Thank you for all of your prayers, Amy
11/04-06/2006 Update
Rees had his first surgery, the closure of his pda valve. This is a fairly common
procedure for preemies to close a heart valve that in full-term babies closes on its own
as soon as they start breathing. Rees did very well, and mommy and daddy did pretty
well going through his first surgery.
There have been 5 failed attempts to insert a PIC line, a line inserted into an artery to
administer his nutrition and meds. Right now it is all going through lines in his umbilical
cord, but these cannot be left in for very long because of risk of infection. The next step
is to insert a central line catheter in his chest, which is a little risker, but if successful
will be better in the long run.
They have taken him off of his blood pressure meds and he is doing very well.