Sofia's CDH Story Volume I Jan-Mar 2008

Sofia's CDH Story, Volume I Jan-Mar 2008
Jennifer Miller December 6, 2008

For Sofia
This is your story; a story of hope, faith, and miracles. Know

that you are loved and prayed for by many, and that God has
chosen you for a special purpose.
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Contents
Dedication 1
Sofia 4
My Pages 114
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Sofia 1
Monday, January 21, 2008

1-4
Bringing Everyone Up to Speed...
Here is the rundown of what's been go-

ing on in our lives since our CDH dia-
gnosis...
10.29.07 - This morning we had our ultra-

sound at 19 5/7 weeks. All was going well
and we were having fun being able to see
such clear images of our baby until the
sonographer focused on the chest for a
LONG time. I'm not certified in ultrasono-
graphy, but it was clear that there was a
large organ next to the heart and it was
not lung tissue. She left the room to get our OB Doctor (Dr. W.), who confirmed that what
we were seeing was the stomach in the chest cavity . We were then referred to a peri-
natologist for further evaluation, who Dr. W. was trying to get us in to see that same day.
We left our appointment and went home to wait for a call from the perinatologist. All day
we just sat and stared and waited. We were completely in shock. As it turned out, we
weren't able to get in that day, or the next, but had an appointment first thing Wednesday
morning.
10.31.07 - 20 weeks today! Today was our first appointment with the perinatologist. My
Mom drove up last night for moral support and came along for the appointment to help re-
lay info to my Dad and be an extra set of ears for us. The perinate confirmed our dia-
gnosis by ultrasound, the baby has left-sided CDH (LCDH) also sometimes known as a
Bochdalek hernia, which makes up 80-90% of all CDH cases. The stomach and some of
the intestines are in the chest cavity, causing the heart to be displaced to the right side of
the chest. This is called a mediastinal shift. It was unclear if the liver was in the chest or
not. Cases where the liver is also in the chest have a decreased chance of survival than
ones that do not. Our baby has been given about 50-60% chance of survival.
We did get a bit of good news. The baby has a healthy brain, 2 kidneys, and the heart ap-
pears to be normal too. A defect with the heart, brain, or kidneys sometimes suggests an
associated chromosomal abnormality, which could be confirmed through chromosomal
testing. We opted to have an amniocentesis as well. This is done by inserting a long
needle through the abdomen and into the uterus to draw out a sample (10-20cc) of amni-
otic fluid for chromosomal testing. (Not nearly as painful as it sounds.) I was afraid Kenny
might pass out for this, but he was right next to me watching the whole thing!
We then met with the genetic counselor to review our family medical histories, both of
which are unremarkable. As of now, no one knows the cause of isolated CDH, meaning
individuals that have CDH but appear to have no other chromosomal abnormalities or
4 malformations. It's believed that the cause of isolated CDH is multifactorial, meaning it
may be caused by multiple genetic and environmental factors. The genetic counselor told
us we could expect preliminary results from the amniocentesis, also called FISH test res-
ults in 1-2 days and full results in about 2 weeks. The FISH test looks specifically at chro-
mosomes 13, 18, 21, X, and Y. Abnormalities of these five chromosomes account for
nearly 95% of all chromosomal abnormalities.
11.2.07 - Today we met with Dr. W. for our regularly scheduled OB appointment. Our
FISH test results were normal! This was definitely good news, since CDH has a high as-
sociation with other genetic/chromosomal abnormalities and syndromes. Full amnio res-
ults should be back in about 2 weeks. This was a very hard week for us, because Dr. W.
also discussed with us, as did the perinatologist, the possibility of terminating the preg-
nancy. Since CDH has such high mortality and morbidity rates, around 20% of patients
opt not to continue the pregnancy. This was a horrible decision to have to face when con-
sidering all our baby will have to face after birth and the months/years to follow, but we
decided to continue with the hope that our baby will be a survivor.
Prior to our CDH diagnosis, we had planned to deliver at the hospital where I work, which
has a Level II NICU. But since the baby has greater needs than a normal, routine deliv-
ery usually does, we will need to deliver at a Level III facility. Occasionally, Level III
NICU's have ECMO machines, but this isn't the case for any of the hospitals in our area.
The only Level IV facility (which has ECMO) is Children's Mercy Hospital, which doesn't
care for adults - including labor/delivery. This means a transfer will be necessary. Trans-
ferring a seriously ill baby is always something that you try to avoid, since it's very dan-
gerous for the baby. But since we have no other local options, we chose to deliver at a
Level III and transfer the baby to Children's Mercy as soon as he or she is stabilized after
birth. This usually takes place within the first few hours after delivery. We chose Over-
land Park Regional Medical Center for our delivery. This hospital has been considered
the "sister" hospital to the one where I work. We share some staff members, including the
Neonatologists and some Neonatal Nurse Practitioners. So it gives me great comfort that
people who know us will be the ones caring for our baby. Also, a nurse I work with, who
also has worked at Overland Park (OP), has so graciously volunteered to be my person-
al labor nurse!! I'm sure this will bring me great comfort during what will be such a
nervous time for Kenny and I. I'm very grateful for the support people have shown us and
their willingness to help or just to say they're thinking of us.
Delivering at OP brings us to another change in plans. Our OB Dr. doesn't do deliveries

at OP, so we will have to find a new one who does. I love Dr. W. and will miss her greatly.
She is a very talented physician and also a great person and friend. And it is thanks to
the great care that she provided us, that we learned of our CDH diagnosis early in the
pregnancy, rather than have a horrible surprise at delivery that no one is prepared for!!
11.5.07 - Today we met with one of the neonatologists in the group that will be caring for
our baby at the delivery and for a short time afterward until the transfer to Children's
Mercy. Dr. S. is one of the neonatologists that practices at my hospital, so I had met her
on several occasions before. She is a great Dr. and also a very caring person. She took a
great deal of time explaining to Kenny and I what to expect with CDH.
5
The primary problem with CDH babies is that because there are organs in the chest that
aren't supposed to be there, the lungs aren't able to develop adequately. How much and
how well the lungs develop will determine if the baby survives after birth. Unfortunately
there is not currently a very accurate way to determine how well the lungs are develop-
ing in utero in a way that accurately predicts the baby's chance of survival. This is defin-
itely the hardest part of waiting because you just don't know until the baby is born if the
lungs will be able to supply enough oxygen to the body to survive. With cases that
present like ours, with the heart shifted to the right, the right lung is usually the primary
lung that develops. How big it is able to grow depends on how much room it has around it
between the heart and the chest wall. The left lung often is severely restricted in growth
because it is compressed by the herniated organs, and may only be a lung bud.
However, as long as there is enough lung to sustain life initially, the lungs can continue to
develop until around 6-7 years of age.
Dr. S. explained what we could expect to happen at delivery and shortly afterward. There
will be a large team from the NICU at the delivery to care for the baby. From other par-
ents' experiences this team is usually anywhere from 10-20 doctors, neonatal nurse prac-
titioners, nurses and respiratory therapists. The baby will immediately be intubated allow-
ing oxygen to be delivered directly into the lungs. The baby probably will not be able to
cry when it is born. Also a tube will be placed into the stomach to keep air from accumu-
lating in the stomach and intestines. If they were to fill with air, this would keep the lungs
from expanding even more. Medications to help with breathing will be given and the baby
will be taken to the NICU to be placed on a ventilator and have IV's started. More de-
tailed info with great pictures and explanations about what to expect can be found under
the CDH Links section on the left. Go to "What to Expect After Delivery."
After the baby is considered stable enough to be transferred, a transport team will place
the baby in an isolette with all the monitors, lines and equipment attached. The isolette
becomes a mobile NICU bed for the baby to travel in the ambulance. They will bring the
baby to our room so we can see him or her for a few minutes, and then they will travel to
Children's Mercy. Kenny will be able to follow behind the ambulance and should be able
to see the baby fairly soon once they arrive at Children's. Babies that are seriously ill
need to be in a dark, quiet, calm environment, so visitors will likely be limited at this point.
While at the neonatologist's office, we also met with a social worker from OP. She gave
us a quick tour of the birthing unit and NICU at OP. While at OP and also at Children's
Mercy, we will be assigned a social worker to help us with a variety of things.
11.13.07 - Today we had our second appointment with the perinatologist. They will be
seeing us monthly for ultrasounds to monitor the baby's well-being, growth, and level of
amniotic fluid. CDH babies frequently have portions of the bowel that have herniated into
the chest, just as our baby does. This sometimes causes too much amniotic fluid to accu-
mulate around the baby in the uterus, also called polyhydramnios, which could cause
preterm labor and other complications. The measure of amniotic fluid is called the Amni-
otic Fluid Index (AFI). They expect it to be roughly between 10-20. Levels above 22-25
would cause concern. Today our AFI was 13.25, so very good. The baby also weighs
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about 1 lb now and is still in the breech position. Anatomy in the chest basically looks the
same with stomach and bowel herniated, and heart shifted to the right. Still waiting on the
full amnio results. The bad news today is that it appears part of the liver is also present in
the chest.
11.14.07 - Full amniocentesis results came back all normal!!
11.30.07 - 24 2/7 weeks. Today we had our first appointment with our new OB Dr. Dr. E.
came highly recommended to me from the nurses I know that work with her at OP. She
will be consulting with the perinatologists about our plan of care throughout the preg-
nancy. Basically all we can do is monitor the baby closely and stay pregnant as long as
possible. Babies with CDH born before 37 weeks typically do very poorly compared with
babies born closer to full term at 40 weeks. Because lung development is our primary is-
sue, being born early would only add to that problem.
Also, we will plan for a natural delivery, rather than a c-section. The stress of labor is
good for babies and stimulates lung function. Also the mechanics involved in a natural
delivery would benefit the baby's lungs by helping to squeeze out excess amniotic fluid.
12.3.07 - Today we had our meeting at Children's Mercy with the neonatology/surgical
team. They met with us for a little over 2 hours to give us some idea of what to expect
after transfer, for surgery and the plan of care to follow. We had lots of questions, and
they took the time to answer everything we could possibly ask in detail. The answers they
gave us coincided with all the research that we had done, and we really feel like our baby
will get great care at Children's Mercy. They really made us a priority while we were there
and we were very impressed with them. They see about 18 cases of CDH per year of
varying severity. Of the more severe cases that present similar to ours, they see about 2-
3 per year.
They told us that based on what we've seen so far on ultrasound, we should expect that
our baby may need ECMO, which is heart/lung bypass. Any baby that goes on ECMO
has a 50% chance of survival. There are a lot of complications associated with ECMO,
and we hope to avoid it if all possible. However, ECMO has saved babies that otherwise
may not have survived, so as a last resort it can certainly be life saving. If the baby
doesn't need ECMO, the optimal time for the hernia repair surgery is after the baby is
stable, possibly 3-4 days after birth. If the baby does need ECMO, they usually stay on it
for 2-3 weeks. The surgeons prefer not to attempt the repair surgery while the baby is on
ECMO, because it is too dangerous, but will do it if they have to.
The repair surgery involves removing the herniated organs from the chest and then pla-
cing them into the abdomen where they belong. If the part of the diaphragm that is miss-
ing is small, say like the size of a golf ball, they may be able to sew the hole closed. This
is the best case scenario. If a larger part is missing, they will have to use a synthetic
patch to close the hole. Using a patch increases the risk later that the baby may reherni-
ate through the patch and have to have additional surgery to repair the reherniation. Also,
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since the patch isn't real tissue, it will not grow as the baby grows, so it will likely need to
be replaced at some point, hopefully not more than once, but every case is different.
Sometimes the abdomen isn't large enough to hold all the organs, since it's basically
been empty up until this point. If that is the case, they have to leave the abdomen open
for some time to allow it to stretch and accommodate everything, then they would per-
form another surgery later to close it. Once the diaphragm has been closed or patched
and the abdominal organs put into the proper place, the heart will slowly shift on its own
back to the middle of the chest and the lungs will finally have the room they need to ex-
pand and continue to grow a little.
After we get past all that, the next big issue is feeding. CDH babies typically have seri-
ous long term problems with feeding and growth. Since the bowel has been malrotated
during development and manipulated so much during surgery, it will be a while before the
baby is able to take any nutrition by mouth and digest it. From birth until the intestines are
working, the baby will be fed through IV's by TPN (Total Parenteral Nutrition). Once the
baby is able to digest food, a feeding tube will be placed either through the mouth (OG)
or nose (NG) that goes directly into the stomach. Feeding and growth will be something
we work on for a long time, and the baby will most likely go home with a feeding tube in
place. We were told to expect that the baby may possibly be able to go home around the
time he or she is 3 months old, but this can vary a lot depending on how the baby is pro-
gressing.
The baby may also go home with some oxygen that is given through the nose by a nasal
cannula, a monitor, and some medications. For this reason, we will not be able to use
daycare and are currently trying to work out our schedules so we can continue working
and also be able to stay home with the baby. We both need to work full time and contin-
ue to carry our insurance to pay all the medical bills that we'll have. I am hoping to work
on the weekends, so I can be home with the baby during the week. But as of now, I'm not
sure that will work out.
After our meeting, we were given a tour of the NICU at Children's by one of the Neonatal
Nurse Practitioners. She showed us the special ECMO room where ECMO babies are
cared for. They can have 2 babies in there at a time if they need to, but usually have just
one. The operating room is attached to the ECMO room, so the baby won't even have to
leave the unit for surgery. We also got to see a CDH baby that was getting ready to go
home. She was about 3 months old and had a very severe diaphragmatic hernia. They
thought several times that she would not survive, but she did and appears to be doing
well and is going home. That was good for us to see, but also very emotional, as it's hard
to see these very sick babies and know that ours is going to be there too.
12.11.07 - 25 6/7 weeks. Today we had another appointment with the perinatologist. The
baby has turned and is now in the vertex position (head down), so that is good. The baby
is measuring 2 lbs. and is about 1 week large for the gestational age. This is good be-
cause the bigger the baby is at birth, the better, because surgery is easier on big babies
than on small ones. Our AFI was also good at 13.61 today. It wasn't clear if the liver was
up or down today, but the best news of all was that we saw the right lung! Up until this
point, we hadn't seen any lung tissue, so this was big news. It looked to be a little bigger
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than the size of the heart, and we found this to be very encouraging. So overall, we had a
great appointment today.
12.21.07 - 27 2/7 weeks. We had another appointment with Dr. E. today. I had my 1 hour
glucose tolerance test, where they give you a really nasty, sugary drink to drink in 5
minutes. Then they wait an hour and draw your blood to see what your blood sugar is.
They said the results should be back in about a week or less. This is the initial screening
for gestational diabetes. I have been a little nervous for this because my fasting blood
sugars run a little on the high side of normal, diabetes runs in my family, and my mom
was gestational diabetic when she was pregnant with me. Although I'm not really at a
higher risk because of those things, I was still nervous for the test. Gestational diabetes is
a concern in pregnancy for several reasons, but the most important one to us is that it
negatively affects lung development. And while a baby of a gestational diabetic mother
may be born at full term and be very large, it may have underdeveloped lungs. It our
case, this is NOT something we need stacked against us even more.
12.26.07 - Dr. E.'s office called today to tell me that I failed my 1 hour glucose test. The
blood sugar level is supposed to be under 130 and mine was 154. What a Christmas
bummer. No sweets for me just in case!! I will need to have a follow up test done to de-
termine whether I have gestational diabetes or not.
12.28.07 - Today was my 3 hour glucose test. I had to fast for at least 8 hours before
coming in, so I hadn't eaten anything since 9pm the night before and my test started at
8:45am. First they draw your blood to check your fasting sugar level. Then I got another
nasty sweet drink to gulp down in 5 minutes. After that you wait in the lobby for an hour,
they draw your blood, you wait another hour, they draw your blood, you wait another
hour, then they draw your blood again and you are done! I finished at 12:00, 3 hours and
4 blood draws later, and went straight to the nearest restaurant.
12.31.07 - Happy New Year! My 3 hour glucose test came back normal!!
1.10.08 - 30 1/7 weeks. We had another appointment with the perinatologist today. They
estimated the baby's weight at 2 1/2 lbs., but said this was probably an underestimate
due to the way the baby is laying today. They suspect the baby is actually closer to 3 lbs.,
which is right on track for the gestational age. The head is measuring at 30 weeks and
the abdomen is measuring at 28 weeks. Since the abdomen doesn't contain the usual or-
gans that have migrated to the chest instead, this is not surprising.
The Dr. also checked an S/D ratio today, which is a measure of the blood pressure in the
umbilical cord. It tells how well the placenta is perfusing with blood and how well the
blood/oxygen/nutrients are being delivered to the baby. An elevated S/D ratio can be as-
sociated with several things, including polyhydramnios and low birth weight infants. The
S/D ratio was normal at 2.4. Normal levels are usually considered to be less than 4.0 at
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20 weeks, less than 3.0 at 30 weeks, and less than 2.0 at full term.
We also had a Biophysical Profile test (BPP). This measures the baby's well-being by
checking 4 things: the baby's breathing movements, muscle tone, body movements, and
level of amniotic fluid. Each of the 4 areas scores either 2 for passing or 0 for failing. 8/8
is normal, 6/8 means we need to repeat the test in 12-24 hours. A score of 4 or less
means the baby is having problems and further testing is needed. We will be having
BPPs regularly in addition to Non Stress Tests (NSTs) until the baby is born. Today the
baby scored 8/8 on the BPP and the AFI was still normal at 13.4. But the biggest news of
all was that we saw the LEFT lung today!! It was almost at big as the heart, so more than
just a lung bud, and it was showing breathing movements. This was great news!!
1.14.08 - We had another appointment with Dr. E. today. Everything was still right on
track. We discussed the option of doing either weekly BPPs by ultrasound or biweekly
NSTs instead. An NST is done my placing an external fetal monitor on me to monitor the
baby's heart rate and any contractions I may be having. She said that I could do bi-
weekly NSTs while I'm at work, which would be great, so we won't have quite so many
Dr.'s appointments to drive to. We will still have BPPs when we see the perinatologist.
1.16.08 - 31 weeks today! I had my first NST at work today. The baby passed with flying
colors. What an overachiever! We will do NSTs twice a week until delivery, and I should
be able to do most of them at work, which helps a lot. It was definitely weird being a pa-
tient instead of the nurse though. It's hard not to watch the monitor and just be a good
little patient ;-)
1.25.08 - 32 2/7 weeks. Today we had our OB appointment. We are going every 2 weeks
now, instead of once a month. We saw a midwife in the group today, because Dr. E. is on
a medical mission trip in Africa for a couple of weeks. Everything is still going well.
...Wow, I know that was a lot of information, but now everyone should be caught up. I
didn't realize how much had happened since the end of October, or I would have started
this earlier. Our next OB appointment is scheduled for Monday, Feb. 11th. We'll see the
perinatologist again on Feb. 12th. I'll post when anything new comes up. If anyone has
questions, please don't be afraid to ask!! You can either post a comment on the blog, or if
you'd rather ask us privately, email me directly at jtmku@yahoo.com
Posted by Kenny and Jennifer Miller at 09:40PM (-06:00)
Monday, February 11, 2008

5-6
OB Appointment Today
34 5/7 weeeks - First let me say, we have been so overwhelmed (in a good way) by all
the support we have received from everyone! We've gotten so many emails sending
thoughts and prayers and it really means a lot to know you all are thinking of us. We had
an appointment with our OB today, but had a scheduling conflict, so I actually saw one of
10
the midwives instead. I've been having contractions on and off since around 20 weeks or
a little before, but didn't think much of it. Lately they have gotten more regular, so I asked
her to check to make sure I wasn't dilating any, because we definitely don't want to deliv-
er preterm. Unfortunately I am already dilated to 3-4cm/90% effaced/and -1 station. At
this point in the pregnancy I really shouldn't be dilated or effaced much at all, so that was
not good news. So now I am on bedrest and trying to make it to at least 37 weeks. We
have another appointment tomorrow morning with the perinatologist, so I will try to up-
date after that with any new info. Please keep us in your prayers and hope for a March
birthday for Baby Miller!
Tuesday, February 12, 2008

7-11
Perinatologist Appointment
We had our appointment with the perinatologist this morning. All good news to report as
far as growth on the ultrasound. The baby is measuring just a little over 35 weeks, so we
are right on track. They estimated the baby's weight at 4lb 14oz. We are really trying to
get to a point where the baby will be a little bigger for surgery. Also there is a weight min-
imum to even be a candidate for ECMO. I think it is around 4 1/2 lbs, so we'd like to be
bigger so we have that as an option if we need it. The amniotic fluid level was normal,
right in the middle range at 14.5, so that was also good news. Baby passed the biophys-
ical profile with 8/8 and it looked like the liver was down today, so that was also very good
news. I had thought that at our previous visits, they had never been able to fully visualize
all the major vessels of the heart, so I asked about having a fetal echocardiogram. Appar-
ently they did a fetal echo at one our previous appointments (this was never discussed
with us), and it was normal. 70-80% of heart problems can be ruled out with a normal
echo, so that was more good news. We were able to see all the major vessels of the
heart coming from their appropriate places today, and even though this doesn't rule out a
heart defect completely, it strongly indicates that everything is ok with the heart and ves-
sels. So for now I am just resting (aka being really, really bored) and trying to stay preg-
nant as long as possible.
Posted by Kenny and Jennifer Miller at 11:34AM (-06:00)

12-15
Weekly Update
35 5/7 weeks - Well, we made it another week! After last Monday, I wasn't sure we would,
but we've had a pretty uneventful week on bedrest (imagine that), but that's the goal - to
be as boring as possible. Friday night and Saturday I had a lot of contractions, but they
eventually got better by Saturday afternoon. Thanks, Melissa, for coming over to be my
personal nurse! We had another OB appointment this morning. I'm dilated just a little bit
more than last Monday, but not a lot, so that's good. She said 4+cm/almost 100% ef-
faced. Hopefully we can get at least another week or two in. After our OB appointment,
we went to the perinatologist's office for another BPP ( biophysical profile) and passed
with 8/8. AFI (amniotic fluid level) was normal again at 15.86, so those are all very good
things. Other than that we have all our bags packed and ready to go. My mom came up
on Thursday to help me do some things around the house and run some errands, which
helped out a lot!! And both my parents came on Saturday to check in and my dad fin- 11
ished our tax returns for us - yeah for tax refunds to help buy baby furniture!!! Kenny's
mom and dad are coming up on Tuesday to visit and bringing lots of good home cooked
food for us. I can't wait for the turkey and noodles! Well, back to my couch for now, hop-
ing for another boring week. :-)
Sunday, February 24, 2008

16
2 Weeks Down...? To Go
We're almost to 37 weeks! This will be a huge milestone for us, because delivering pre-
term would have meant even more complications. Still, we want to get as many more
days or weeks in as possible for maximum lung development and weight gain. This has
been a pretty easy week, so hopefully we can go one or two more. The baby should
weigh almost 6 lbs now if growth is still average. We most likely will not have another es-
timated fetal weight measurement done before delivery, so it's really anyone's guess as
to how much the baby will weigh when he/she is born. We've started talking about order-
ing some furniture for the nursery this week, since it takes about 6 weeks to get it in. This
is really the first thing we've done to prepare for the baby's arrival. We decided not to get
a nursery ready or have any baby showers until after the baby is born, so I'm excited to fi-
nally get to do some of these things! We have another BPP at the perinate's office and
then another OB appointment to follow tomorrow morning, so I'll post the update as soon
as I get home.

17-21
No News Is Good News
36 5/7 weeks - Not much new this week, but that's a good thing. We had our BPP before
the OB appointment and passed after Baby Miller finally decided to wake up from a little
nap. The AFI was 14.46 this week, still doing well. Nothing new at our OB appointment.
Dr. E. said I really wasn't dilated much more that last week if any at all. Then she sent me
over to OP Labor & Delivery to have some labs drawn, so they will already have those
results when I come in to deliver.
Dr. E. has taken a lot of time over the last week to take charge of the situation and per-
sonally make sure everyone is prepared for us when we arrive, so that is really reassur-
ing. It's nice to know that when we go in to deliver, the staff will have some idea about
what's going on, since it might be a relatively fast delivery.
We've been enjoying some great food this week that Kenny's Mom and Dad brought up
for us. Thanks Cheryl, it's all really good - best turkey and noodles I've ever had!! Not that
Kenny doesn't make a mean frozen pizza, but I do appreciate the home cooked meals!
My Mom and Dad also came up this weekend and helped around the house again, which
really helps us out a lot too - thanks guys! We got our second guest bedroom pretty much
set up here at Hotel Miller and the new office is mostly up and running too. The baby's
room is a disaster area, but we have some time to get it ready.
12 I set it up for my Dad and my friend, Kristi, to post updates on the blog for us when we
are in the hospital, so they can keep everyone updated and post some cute baby pic-
tures as soon as we get them! Well, that's about it for now. I'll update if anything new
happens. Also, Happy Birthday to Uncle Kris today!!!
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Special Prayer Request
This is a special prayer request for a family from my hometown in Kansas. LeAnn and
Travis are expecting their baby this Wednesday and their baby has been diagnosed with
a rare and serious condition called Caudal Dysplasia Sequence. Please keep them in
your prayers this week and in the weeks to come.
Saturday, March 01, 2008

23-25
CDH Awareness Day in Kansas City!
Breath of Hope, Inc. is a non-profit organization founded in 2004 by Elizabeth Doyle-

Propst, who lost her beautiful daughter, Cecilia, to CDH 9 years ago. It's an online sup-
port group for families and friends affected by CDH, and it's mission is not only to provide
an excellent support system, but also to raise awareness for CDH. Raising awareness
encourages research in order to improve current treatments and ultimately to find the
cause of CDH so it can be prevented.
The Board of Directors of Breath of Hope launched an awareness campaign for CDH last
July. Since then, several more members have become active in this campaign by re-
questing their governors and mayors proclaim March 31st as CDH Awareness Day.
Since then, 21 states have signed proclamations and several more are pending. Breath
of Hope has become an international support group with members in Europe, Australia,
and Mexico. One member in Mexico has even gotten President Calderon to sign a na-
tional proclamation, making Mexico the first country to recognize March 31st as CDH
Awareness Day. BOH member, Jeanie Toney (Mom to Ryan - CDH & ECMO survivor
1987, a college sophomore, now 20!), has been working closely with the Deputy Chief of
Staff for President Bush and is close to getting President Bush to sign a national proclam-
ation for CDH Awareness Day.
While national recognition is the ultimate goal, each state that signs helps to increase
awareness. In addition, 7 cities have also signed proclamations. As a member of Breath
of Hope, I have joined this campaign for awareness by mailing requests to Governor
Blunt in Missouri and to Mayor Funkhouser in Kansas City. My parents, along with BOH
member Tanya Gottschalk (who lost her daughter, Naudya Jo, in May 2007), also mailed
letters to Governor Sebelius in Kansas. Thanks to the hard work of BOH committee
member, Jean Ashner (who lost her son, Luke, June 2007), Missouri has signed the pro-
clamation! My official copy of the Missouri proclamation came in the mail today from Gov-
ernor Blunt's office. See picture below. Currently, Kansas is denying the proclamation be-
cause they don't consider CDH Awareness Day to be of " local or regional interest". But
we are still working to get that changed.
13
After contacting the Mayor's office here in
Kansas City, my work has paid off. This
week, Mayor Mark Funkhouser signed
the proclamation, making Kansas City the
7 th city in the U.S. to declare March 31st
CDH Awareness Day! Since I'm stuck at
home, my best friend Kristi, went in my
place to pick up the official proclamation
from the Mayor's office yesterday. See
the picture below!
So to commemorate the first annual CDH

Awareness Day here in Kansas City, I'm
asking everyone to please wear tur-
quoise on March 31st in honor of Baby
Miller and all other babies affected with
CDH.
Posted by Kenny and Jennifer Miller at
11:52AM (-06:00)
Sunday, March 02, 2008

Thank You
I really want to thank all my coworkers at Menorah for their overwhelming generosity.
They have prepared meals for us and delivered them to the house, sent cards and gifts,
made phone calls to check in and done whatever they can to help us in any way we need
it. We really couldn't make it without the help of such good friends. Your prayers and
good wishes have really touched me, and I sincerely thank you.
Jennifer
Monday, March 03, 2008

26-35
Baby Miller Has An Induction Date!
37 5/7 weeks - Well, we've officially made it to full-term status! We'll be 38 weeks on
Wednesday, and we've reached the point now where the benefits of having a planned
and better controlled delivery may outweigh the benefits of getting another week in. So
with that being said...Baby Miller has an induction date, and we hope he/she cooperates
and doesn't decide to jump ship before then! While waiting for the Luck of the Irish on the
17th would have been nice, we felt like we might be pressing our luck by waiting that
long, so we scheduled the induction for next Monday, the 10th. If all goes well, Baby
Miller will be making the big debut in just 7 days!
14
Our OB appointment went well today with no other exciting news to report. We saw the
perinatologist for the last time today as well. The AFI was still normal at 13, which is
really encouraging because many CDH babies have trouble swallowing toward the end of
the pregnancy and end up having lots of excess amniotic fluid. The BPP was again 8/8
and growth seems to still be on track. It's a little harder to have accurate measurements
with the abdomen being so much smaller because the organs are in the chest, but the
perinatologist thought the baby weighs somewhere around 6 lbs.
I also wanted to update on the family I mentioned from Iola last week. LeAnn and Travis
welcomed Baby Theo on February 27th. He was transferred to Children's Mercy that
evening and has been holding steady. They are waiting on numerous test results, includ-
ing an MRI today to look at the brain and spinal cord. Please continue to keep them all in
your thoughts and prayers.
Wednesday, March 05, 2008

36-38
CDH Awareness Blood Drive
Most people aren't aware of this, but CDH babies often need multiple blood transfusions
during the course of their treatment. Donating blood is a way that people can help. Even
if your donation doesn't go directly to someone affected with CDH, it is still able to help up
to 3 people in need of blood or blood products. With the help of friends, I've been able to
work with Menorah Medical Center in organizing a blood drive that not only raises aware-
ness for CDH, but helps dozens of people in need of lifesaving blood. The blood drive will
be held on Monday, March 24th at Menorah Medical Center. To donate, you may sign up
online by visiting http://www.esavealifenow.org/ Click on "Find a Drive". Enter sponsor
code: menorahmedctr Select a time and sign up. It's that simple, and just a few moments
of your day may help to save 3 lives!
If you have never donated blood before and have questions, check out this info from the
Community Blood Center. Kenny and I encourage you to become a blood donor in honor
of Baby Miller. Kenny's Dad has already set the bar high - he has donated 7 1/2 gallons
of blood!!

39-40
KS Proclaims the Entire Month of March CDH Awareness Month!
Another victory in the CDH Awareness campaign came this weekend. Initially Kansas
denied the proclamation for CDH Awareness Day, because the Governor's office determ-
ined that it was not of "local or regional interest." After 2 letters to Governor Sebelius, my
parents took another route and contacted Senator Schmidt. The work paid off and Gov-
ernor Sebelius signed the proclamation declaring March CDH Awareness Month! See the
official proclamation below!
15
41-46
The Countdown has Begun
Just a few hours left to go until we head in to the hospital - 7 hours to be exact! Baby
Miller will be here by this time tomorrow and will finally have a name other than Baby
Miller!!! We are excited to meet this little one and see what the next phase of this journey
brings. We are so blessed to have a great team of people working tomorrow to take great
care of our baby and lots of friends and family to support us. Thank you to everyone for
your thoughts and prayers, phone calls, emails, and cards. We really appreciate
everything. We'll post an update just as soon as we can with all the big news and hope-
fully some baby pictures!

47-68
It's a Girl!!
It is an honor, as my first duty as a Grandpa, to announce that Sofia Rose Miller arrived
at 11:43 a.m. this morning. She was 19 inches and weighed 6 lbs. 4 1/2 oz.
Jennifer is doing well, as is Kenny. The NICU is preparing Sofia for transport to Children's
Mercy Hospital in Kansas City, MO. Early reports of Sofia's condition sound positive. Jen-
nifer will be providing updates regarding Sofia's progress in the days to come.
On behalf of Kenny's parents (Grandma Cheryl and Grandpa Kenny) and Jennifer's par-
ents (Grandma Linda and Grandpa Steve), we want to thank all you that have helped
Jennifer and Kenny in so many ways. A special thank you for all of the prayers for Sofia.
Please continue to pray for miracles in the days and weeks to come.
Posted by Steve at 01:10PM (-05:00)
69-88
Pictures of Sofia
Sofia is doing well so far! I'm pretty exhausted and not thinking very clearly so this post
may not make much sense. She was transferred to Children's Mercy around 4:00 and did
well during the transfer. After being settled in at Children's, they placed a chest tube and
central line. She is pretty sedated now, but holding steady with oxygen saturation 90's -
16
100% (doesn't get any better than that!) She's on the oscillating vent and getting inhaled
nitric oxide, which helps with pulmonary hypertension. Kenny is staying at her bedside at
Children's and I should be able to be discharged tomorrow so I can join them. Here is a
quick slideshow with some of Sofia's first pictures!
Photo and video editing at www.OneTrueMedia.com


89-95
Super Sofie!!!!
It was a busy day yesterday. We are sorry about slacking on the update. I tend to ramble
a bit so forgive me if this isn't as good as what you are used to getting from Jennifer.
I want to start by thanking everybody for their thoughts and prayers. Whatever you are
doing keep it up because our little girl is as good as we can hope for at this point. She is
such a strong little girl.
Mom got released late yesterday morning from the hospital so she was able to spend a
lot of time with Sofie yesterday. She probably overdid it because she was in a lot of pain
last night. Thankfully they have Ronald McDonald Family Rooms here at the hospital so
she was able to lay down last night and get some much needed rest.
Well I better get to the star of the show. While I don't think they could find room for anoth-
er wire or tube on her little body and she has enough drugs going in her to make every-
body on Celebrity Rehab very jealous, she is doing really good. The main problem right
now is there is air leaking from her right lung that they are trying to get under control.
They put a chest tube in not too long after she got here to help relieve the pressure. After
several rounds of Xrays throughout the day they thought it wasn't in the best location to
be getting everything so they put in another tube last night and her blood pressure num-
bers are the best they have been since we got here. The doctors have even said that if
continues to progress at this rate that they're optimistic that we will be able to make to
surgery without having to go on ECMO. Which may be the best news yet.
I think I should start leaving her alone more often because everytime I went in to see her
last night they were lowering her settings on the ventilator. The Doctors told us we are on
the low end of the range of settings, but it's still good to see everytime they go even
lower.
The surgens were in to check on her this morning, which is good becuase the doctors
told me when we got here we wouldn't see them too much untill her vitals got into a range
that is safer for surgery. They told me we aren't quite there but we are getting closer.
Some of her doctors have begun a study that is trying to help babies that have to take a
lot a pain killers. With babies that are on pain killers for a long period of time they begin to
develop a tolerance which means the drugs levels have to continue to increase. This also
means they have a harder time with withdrawls when they start to come off the drugs. So
her doctors want to try a drug that has been used on adults and has been effective but
17
hasn't been studied on babies yet to try and limit the the need to increase her pain medic-
ation levels. Our little girl is the study's first participant. So the doctors say if this works
she will be legendary to a lot of babies in the future.
Well while it seems like I have been writing forever I sure I am leaving out so much. I
need to go down and get Mom so I will sign off for now. Keep those prayers coming.
More updates later. Hopfully from Jennifer who is better at this stuff.
Sofie's Dad.
Sent from my iPhone
_______________________________________________________________________
_____________
Never miss a thing. Make Yahoo your home page.
http://www.yahoo.com/r/hs
Thursday, March 13, 2008

96-101
A Day of Highs and Lows
We started off the day with Dr. H (neonatologist) removing that first chest tube because it
was no longer functioning and didn't need to be there. She was still stable with no further
problems. Her team made morning rounds around 1030. It was the first time I had been
there to hear what they all had to say and ask questions. Sofie seemed to do really well
through the night after the 2nd chest tube was placed, and the team was pleased with her
progress. Her labs from the night before were all reassuring and her vitals still stable this
morning. Her primary problem is pulmonary hypertension ( PPHN) and it seems as
though her PPHN is mild to moderate with the mean pressure hanging in the low to mid
40's. That seems to be where she keeps her O2 sats the best (95-100%) and her heart
rate steady in the 120's. Dr. S (neonatologist) told us a couple of the surgeons would be
by to see her soon and they are saying possible repair surgery in 1-2 days. We were very
encouraged to hear this! However around noon she had her first of several setbacks. She
spontaneously dropped her blood pressure to the 30's and her heartrate went up. During
the morning she had slowly been rising her b/p to the mid 50's in order to keep her sats
and hr stable. So this was a pretty significant drop. They were concerned maybe her
chest tube wasn't working properly so they took another chest xray. It showed no
changes which was good. They gave her a fluid bolus to help her recover which worked
quickly. They drew an ABG (arterial blood gas) which was excellent, so they actually de-
cided to wean her vent settings even more from 33 to 31. This was her biggest jump
down, so we were very excited. Not long after that, Dr. S told us her repair surgery was
scheduled for 1pm tomorrow (Thursday). We were thrilled but also very nervous.
Around midafternoon, she had another spell like she did in the morning. They gave an-
18
other NS fluid bolus and also gave 3 of hydrocortisone to try and help her blood pressure,
which has settled in the 50's, making her PPHN a little worse overall. Through the after-
noon her b/p's were labile and then around 4:45 pm she dropped her sats to the upper
80's and had another spell. Her ABG was not as good and her PPHN was worsening. So
she probably won't be having her surgery Thursday, which is okay with us because we
want her to be more stable when she goes in. After that last spell, they increased her
dopamine and dobutamine and jumped way up on her vent settings from 31 to 36. Since
she doesn't have much further to go on the vent or with her blood pressure medicines
and her PPHN is getting worse, they are now considering putting her on ECMO. So after
starting the day at the highest of good news, we were ending with some of the worst
news.
We went down to rest in our sleep room and pray that Sofie stabilizes and doesn't need
ECMO. It's now around 3:15am and Kenny just went to check on her and said since her
last spell around 5:00 pm she has been pretty stable with sats 95-96%, b/p steady in the
50's and hr steady in the 120's. No further spells, her ABG's have been good, and her
vent settings were weaned again down to 34 from 36. Her 1:00am chest xray showed her
pneumothorax was slightly worse and her urine output is down a little. They are okay with
her urine being less because she had been putting out tons, which means her kidneys
are being perfused and working well. So that is where we stand heading into Thursday. I
pray that we can get back on the right track and avoid ECMO and that her PPHN im-
proves. Please pray extra hard for Sofie today, she really needs it!
102-114
Prayers are Working!
Sofia had a good night overall last night and seemed to get better as the night pro-
gressed. She only had one spell where she needed a fluid bolus during the night, where
she needed 5 boluses during the day yesterday. When we visited her at 4:15am she was
moving her arms and feet quite a bit. However she was tolerating it really well and her vi-
tals remained very good. Her b/p has resettled in the mid to upper 40's and her hr and O2
sats remain very good. Her blood gases (ABG's) were better during the night and con-
tinuing to improve this morning. They were able to wean her back down a bit on the vent
to 33.
This morning during rounds the team was very encouraged by how much she had im-
proved and feel today or tomorrow may be a good time to do her surgery while she re-
mains in this stable window. We are waiting for the surgeons to come by and see her
now and there is talk that they may actually do it today. The goal is to get it done while
she is as stable as possible to avoid having to go on ECMO before the surgery, because
doing the surgery on ECMO is much more risky. There is still a chance even if she did
have her surgery today that she might need ECMO afterward.
After her 9:00am ABG her levels were so good they weaned her vent again down to 32.
Yeah Sofie! You can do it! Her 11:00 ABG was also rock solid so they did another echo
to check her pulmonary pressures more accurately. This is kind of the final criteria that
needs to be good for surgery to happen. Will update again when we hear anything about
surgery. Please continue to pray for Sofie to stay strong and stable!!
19
Sofia's Mommy
Friday, March 14, 2008

115-122
Day 1 of ECMO
Sorry for the delay in updates! We had a

rocky day yesterday and didn't have an
opportunity to post anything. Also, I'm
sorry we haven't been returning calls or
emails. We have been at Sofia's side and
haven't been home since she was born.
We can't use our cell phones in the NICU
and haven't had computer access until
today, so our only contact with the "out-
side world" has been our wonderful par-
ents who have been staying at our house
the few hours that they aren't here with us
and taking care of our 2 little furry babies, Gracie & Lola. Thank you so much to them for
bringing us clean clothes and anything else we ask for from the house!! We couldn't
make it without you.
We started out yesterday on such a high note. We thought we'd be through with the re-
pair surgery by now and on the road to recovery. They decided to move her to the OR
suite which is attached to her room at 1:00 pm yesterday to see how she tolerated it. The
move took 30 minutes and 9 people. I think Kenny and I held our breath the entire time. It
was very stressful to watch!! She tolerated the move very well and continued to be stable.
So around 3:00, they scheduled her surgery to be today starting between 10:00am-
12:00pm.
That was the plan until about 5:30, when her O2 sats suddenly dropped to the 80's. Her
heartrate started climbing and she began to be more and more unstable. At 6:30 her sats
were hanging at 67% and the doctors started discussing ECMO with us. She had quite a
team of people assembled to take care of her. Her doctors and nurses have been fantast-
ic here! They are taking such good care of her, and we are always reassured that she's in
good hands. Finally at 10:00 pm, the decision was made to place her on ECMO. In the
hour before they made the decision to do ECMO, she was trying so hard to fight. She
raised her sats up to 77% very slowly, with her Daddy cheering her on. This wasn't the
scenario we were hoping for, but it was clear that she was getting tired and really strug-
gling. Being on ECMO will give her a chance to rest a little and regain her strength so
she'll be stronger for surgery.
They started her ECMO procedure to place the cannulas around 10:30 pm and finished
around midnight. Then they slowly changed all of her settings over to accomodate her
being on ECMO. They took her off the high frequency oscillator vent and placed her on a
conventional vent. They will not need to oxygenate her with the vent as much since she
will be oxygenated by the ECMO circuit. This will allow her lungs and heart to rest.
20
We finally got back in to see her around 1:00 am. She tolerated the procedure very well
and immediately brought her O2 sats and blood gases back up to a normal range. She is
so strong!!
Today was a much more stable and restful day for everyone. We can see that she is rest-
ing easier and not struggling as much, so that's good. She also doesn't have to be quite
as sedated now, so once in a while she'll move her toes and feet and move her little
hands. She is pretty swollen from all the fluids and blood products she has gotten so she
can't open her eyes because her eyelids are swollen. Since the ECMO circuit keeps her
stable, she isn't stressed as much by lights or noise or being touched, so we have been
able to touch her a little bit today and talk to her. She even got her first bath early this
morning! Her hair is strawberry blond and it's wild!!
I'm sure we'll sleep better tonight too, and we may even go home a little tomorrow if we
can tear ourselves away from our sweet baby!

123-129
Day 2 of ECMO - Morning Update
Sofia did well last night, she has remained stable, so we are thankful for that. We are
waiting for the team to make rounds this morning and see what the plan is for today.
Hopefully we are in for an uneventful weekend, so Sofie can rest a little. They may start
to wean her off the ECMO machine early next week if she continues to do well. We're
hoping she'll come off strong and ready for surgery. I'm hoping to post some more pic-
tures later today. She was the littlest KU fan last night with her KU bear next to her dur-
ing the game! Sofie says, "GO HAWKS!!!!"
Sofia's Mommy
130-134
The 5 Day Plan
The team finished making rounds around noon. Overall they are very pleased with how
Sofia is doing. The plan is to continue to rest her on ECMO for a few more days and then
possibly try to start weaning her off ECMO Tuesday or Wednesday of next week. If she is
able to wean off ECMO, they would probably do her repair surgery 2-3 says later. If she
isn't able to wean off, they'll wait 2-3 days and try to wean her off again. They will usually
try to wean off 2-3 times before they would consider doing the surgery on ECMO.
However, they are very optimistic that she'll be able to come off before her surgery, since
she did pretty well for so many days before going on. They said she never had any really
bad episodes and her PPHN never got really bad. Her pressures only got up to mid 50's
at their worst and they say 65 is pretty bad and 45 would have been really really good.
On Tuesday or Wednesday of this week, they put a catheter in because she hadn't had a 21
wet diaper for almost 8 hours. Once they put it in, she emptied tons of urine, so it was just
the morphine she's on that was making her retain urine. They took her catheter out yes-
terday to see if she would go again on her own. The last couple of days her urine output
has decreased a little, but is still adequate. They think the reason for this is she might
have too much sodium in her TPN, so they are reducing that to see if she'll have more
wet diapers to get rid of some of her fluid. This may help some with her swelling. They
also check often to see how thin her blood is, since she has to be on a lot of heparin with
the ECMO machine to keep the blood from clotting while it's running through the circuit
and back to her. Her levels were all good last night and she didn't need any blood
products at all last night.
This morning while we were waiting for the team to make rounds, her nurse helped us get
footprints and handprints for her baby book. See how cute!!!
22
Posted by Kenny and Jennifer Miller at 12:01PM (-
05:00)

135-139
Day 3 of ECMO
Sofia is still doing well on ECMO. She was stable

throughout the night and didn't need any blood or
blood products last night or today until around 5:00
pm, when she got 1 unit of platelets. Every morning
they do an oxygen challenge test on her to see how
well her lungs are resting and how much lung func-
tion is returning since she's been on ECMO. They
turn her oxygen up to 100% and then check the oxy-
gen level in her blood. It should be above 200 with
good function. Yesterday her oxygen level after the
challenge was 80. Today it jumped all the way up to
151!! Big improvement!
The nurses also say they really think the Narcan drip
(from the study she is pioneering) is really helping
her. Her morphine and versed dosages have not
needed to be increased since she arrived. Her dosages are 40 of morphine and 30 of
23
versed. Some babies that are on narcot-
ics for a very long time get up to dosages
of 300 of morphine and 200 of versed. So
she is on a very low level and still scoring
0-1 on her pain levels. She is a little more
active and sometimes wakes up, but she
doesn't seem to be in any pain and she
tolerates the increased activity very well
with no change in vital signs. They are
hopeful when she finally comes off of the
narcotics, her withdrawal symptoms may
not be as severe since she had the Narcan drip. We hope so too!!
Her sodium levels decreased after they changed her TPN yesterday and she started hav-
ing lots more wet diapers, which is great. She is a lot less swollen today and her urine
output is very good.
Yesterday was the first time she woke up and opened her eyes since right after she was
born. I'm so glad we were there at her side to see it! We took a few pictures too (for a
child that sure doesn't do much, we have 500 pictures of her already). She also was
sporting her CDH Awareness Bow yesterday, courtesy of Grandma Linda.
Mommy putting my first bow in
My first hairdo
Littlest KU fan - Go Hawks!!!
Here's a quick picture from today. I'm

working on putting together some more
slideshows. Hope to have them up tomor-
row.
24
11:59PM (-05:00)

140
Sofia had another good night last night. She got another blood transfusion and another
platelet transfusion and had to have a small amount of pain medication so she could rest
a little better. Her oxygen challenge test this morning was great! Her level was in the mid
200's today, up from 151 yesterday so that's really good. Yeah Sofie!!!
She got to have a few visitors over the weekend, while she is a little more stable. We'd
love for more people to be able to come see her, but she is still too critical for much activ-
ity and her risk for infection will continue to be an issue for many months to a year. The
risk for infection is why we won't be able to take her out in public places or to daycare for
a very long time, and she can't be exposed to other children during that time either. But
Sofie thanks you all for your wonderful prayers and good wishes!!!! Please continue to
pray for Sofie to rest and regain her strength to fight her next fight. They plan to try to
wean her off ECMO early this week and that will be a very critical time for her. After that,
the next major hurdle will be her repair surgery, possibly at the end of this week or begin-
ning of next week. She is such a strong baby, and your prayers have helped to carry her
through some very rough times!
Sofia's Mommy
141-145
Happy St. Patrick's Day!!
Wearin' My Green!
Sofia's First Smile

03:25PM (-05:00)
25
146
THANK YOU!!!!!!!
While we have a chance, Jennifer, myself and especially Sofie would like to thank every-
body who has gone out of their way to help us get through this difficult time. We have re-
ceived so many cards and gifts, many of which come from people who we have never
met, that we have just been blown away. It is truly amazing how kind people can be and
words cannot express just how grateful we are. Just knowing that there are so many
people out there pulling for our little girl is so comforting and gives us even more hope
that we are going to make it through this.
To our parents who have kept watch in the sometimes crazy waiting room and to Kristi for
all the things you have done to keep Jennifer sane, we appreciate it.
I would also like to thank everyone at my job for everything they have done to help me
out personally. I knew before this that I worked at a pretty great place, but this has really
solidified it. The gifts you have given and all that you are doing to try and raise aware-
ness have been amazing. But to have people giving up their personal vacation time to me
so that I will be able to spend more time focusing on Sofie may be may be the best gift I
could have received. I know you are probably expecting me to say this, but you have
done too much. If you are trying to make a lifer out of me you may have sealed the deal.
To our friends Amandrew, we will never be able to repay you for all that you have done.
I wish I could mention everyone by name but I don't want to leave anyone out. Just know
that we are keeping a list and when she is up to it Sofie will be hand delivering thank you
notes.
Continue to keep us in you prayers and Thank You.
Sofie's Dad
147-151
Sofia's Big Week
This will be a big week for Sofia. The team made rounds late in the afternoon today. They
say she is doing very well on ECMO and they are confident she'll be able to wean off for
surgery. There are risks and benefits for doing the surgery on ECMO and off ECMO, but
the least risky seems to be to do it off ECMO as long as she is stable enough to handle it.
Once they take her off, they cannot put her back on, so she'll be on her own from that
26
point. ECMO is a one-time thing for the most part. So the risk with taking her off is that if
she becomes unstable again after the surgery, they can't put her back on again. There is
a chance that if that were to happen, they could attempt VV ECMO, which is a little differ-
ent and not quite as beneficial as it doesn't allow the heart to rest. She is currently on the
most common type of ECMO, which is VA ECMO. VA means it involves both an artery
and a vein. VV ECMO only involves the vein. But that is a last resort, and they don't think
she'll need it. If they did the surgery on ECMO, she'd have the "safety net" of it still being
there for her afterward. However, the risks of bleeding would be enormous and outweigh
that "safety net" benefit.
The main factor in how she will tolerate coming off ECMO is her lung function. If her
PPHN is resolving, there is little risk that she would rebound to the point she was at be-
fore going on ECMO. They will do an echocardiogram in the morning to check her pro-
gress on this.
If all looks well in the morning, the plan is to start weaning her off ECMO sometime to-
morrow afternoon. They'll do this over a period of 12 hours or so and then trial her off the
ECMO circuit by clamping the tubes for around 2 hours to see how she would tolerate be-
ing completely off. If that all goes well, they will remove the ECMO tubes (cannulas) on
Wednesday. If she remains stable, her repair surgery could be done on Thursday or Fri-
day of this week.
The doctors say she may be very critical coming off ECMO and then again for the first
24-48 hours after surgery. After that point, everything will hopefully be much smoother for
her and she'll be on the road to recovery!!! She has been amazingly strong all along, so
we have faith that she'll do really well with all of this. She needs lots of prayers this week
to get her through the rough patches that await!
Kenny and I finally went home for the first time on Saturday night since Sofia was born. It
was so hard to leave her here!! But we knew these last few days would be her most
stable for a while, so we needed to rest while we could. Tonight will be our last night at
home for a while and then we'll be living at the hospital for a few days again. It's so nice
that there are sleep rooms and a shower for us downstairs in the Ronald McDonald Fam-
ily Room. We stayed there all last week and it was great knowing she was just a few
steps away and we could visit her during the night. Everyone has been so great here to
help us with anything we need. We are also really happy that Dr. H will be on all night to-
morrow night, during Sofia's weaning process to watch over her. She has been taking
care of Sofia since her arrival here at Children's and she is fantastic!! Sofia is receiving
excellent care here from all of her doctors, nurses, and RT's. Thank you to all of them!
Sofia's Mommy
Tuesday, March 18, 2008

152-154
Sofia had a restful night last night. She is continuing to do well and we are so thankful for
that. She did very well on her oxygen challenge test this morning, with her oxygen level
27
reaching 314, up from 246 yesterday. Yeah for Super Sofie!! We are still waiting for her to
have her echocardiogram sometime this morning. That will give us a better idea as to
how her PPHN is resolving. She only needed 1 unit of platelets last night and no blood,
but it's been about 24 hours since her last transfusion, so she'll probably need some
blood sometime this morning or this afternoon. She looks great, so pink and so cute!!! I'll
update again after the doctors make rounds and let everyone know when she may start-
ing weaning off ECMO today. Go Sofie!!!!!
Sofia's Mommy
155-158
Weaning Off ECMO Tonight!!
Even though we hit a small snag this afternoon, the plan is still to try to wean Sofia off
ECMO tonight. This afternoon she had an echocardiogram to see how her PPHN is do-
ing. We expected it to be better than it was before ECMO, showing signs that it was be-
ginning to resolve a little bit. Her last echo pressure before ECMO was 55, and today it
was 78, so quite a bit higher. That was discouraging, but the plan is still to attempt to
wean her off. Some CDH babies continue to have PPHN for weeks or months, even after
their repair surgery. Some even go home with pressures around 60 and take medication
for a while, so we'll forge ahead and hope she shows us her tremendous strength again
in the coming days.
The plan is to begin weaning her ECMO settings at 9:00 pm tonight. The process will
take several hours. They hope to be down on a very low flow of ECMO by 6:00 tomorrow
morning and then leave her on that setting for a couple of hours to see how well she tol-
erates it. If she does okay with that, they will clamp her ECMO cannulas for 3-4 hours.
This is called "trialing off ECMO", and it's a preview of how she'll do when she is taken
completely off ECMO. If she does well with the trial, they are scheduled to remove the
ECMO cannulas sometime between 12:00 and 2:00 pm tomorrow. From that point, they
want to give her 36 hours to stabilize herself before proceeding with the repair surgery. If
all goes well, her surgery will be around noon on Friday. So that is the plan as of now.
These next few days may be pretty rough for Sofia, so please pray extra hard for her !!
If she doesn't tolerate the wean tonight, they will turn her ECMO settings back up and let
her rest a couple more days before trying to wean again. There is also a good possibility
that because of her PPHN, she may need to go back on the high frequency ventilator to-
night and receive INO therapy (inhaled nitric oxide to dilate the blood vessels in the
lungs) again to help with better oxygen exchange. Dr. H is also starting her on a new
blood pressure medication tonight called milrinone to help with the PPHN. Dr. H is a great
doctor and she'll here will Sofia all night tonight during the weaning process. We are so
thankful for that!!
Kenny and I are staying here at the hospital again tonight and probably for the next sev-
eral nights, until Sofie gets through this part of her recovery. We tried to power nap this
afternoon for the all-nighter tonight. I'm sure we'll have no problem staying awake!
Sofia's Mommy
28
159-162
A Long Night
We are underway with the weaning. She got off to a bit of a rocky start. Before they even
started the weaning process, her night nurses were assessing her and noticed a leak
around her chest tube sight and she had been laying in about 22cc of serous drainage
from it. They cleaned her up and repositioned her towards her right side, which she's
really never been on. Her pressures went down pretty quickly from 70 to 45 and her sats
dropped to about 88% for a while. After about 30 minutes, they moved her more to her
back and turned up her vent settings a little. Her sats are low 90's and her pressure is 45-
50. They are turning her ECMO flow down every hour and drawing ABG's every 2 hours
on the evens, so the next one will be at 2:00 am. We are in for a long night I think. I'm
working on photo slideshows to try to keep from looking at the monitor every 2 seconds.
It's not working!!
In trying to keep myself distracted, I put together a slideshow of the day Sofia was born. I
also wanted to thank everyone at OPR for the wonderful care that Sofia and I received
while we were there. Thank you to Dr. E for a great delivery, to Dr. H and the rest of the
NICU team for getting our sweet little girl off to a good start, and to Julia and Melissa for
taking extra special care of me. All things considered, we had a wonderful experience,
and I couldn't have asked for an easier delivery.
As you all know, we didn't find out whether Sofia was a boy or girl while I was pregnant.
We wanted to be surprised at her delivery, so through all the ultrasounds and the amnio-
centesis, we made it to our induction date without finding out her gender. Early in the day,
some of the NICU nurses came in to set up a few things for delivery. They had been told
the baby's gender and had prepared some gender specific things for the baby in the
NICU, but they had also been told that we didn't know and not to tell us. When they came
in to set up, one of the nurses accidentally looked over and said to us, "so, you're having
a boy?!" We thought the surprise had been ruined. We called our family in and told them
all, "it's a boy!" We also told them his name would be Liam, and wrote Happy Birthday
Liam on the board in the room. You can imagine our surprise when Liam came out - a
girl!! Turns out we were even more surprised to meet Sofia! The nurse felt so bad for
spilling the beans, but it turned out she was mistaken and it made for a good story that
we'll laugh about for a long time!
Make an on-line slideshow at www.OneTrueMedia.com


163-168
Doing Good
It was a long night, but our tough little girl made it through with no problem. I think she
was much more comfortable than her parents. The doctors just got finished rounding on
her and are very pleased with how she responded to the weaning last night. Her blood
pressures and oxygen levels are great and she is doing it without any meds for help and
her vent is only at 50%. Her lung is expanded nicely and she isn't showing any signs of
the earlier air leak. Dr. H said if there is such a thing as a perfect ECMO run she did it.
So the plan is to clamp her off the ECMO in a little while and see how she responds to 29
doing all the work on her own for a couple hours. If that goes well she will have the sur-
gery to remove the canulas from her neck with the thought being to do her repair surgery
on Friday.
The doctors say that since she has done so well without much additional help that we still
have a lot of tools in the bag if she should need it. But let's just pray we don't need them.
These next few days will be a little rocky, but when we know more Jennifer or myself will
try to update.
Sofia's Dad
169-176
Not Quite Ready
Well we tried and little Sofia just wasn't quite ready to come off the
ECMO today. Everything was going pretty good, but she just wasn't able
to keep her CO2 levels down in a good range once they clamped her off.
The doctors said there were drugs they could have tried to help her
out, but they felt that since we were getting close to our time limit
for being clamped off that it was best to just turn it back on and
give her a few more days to rest.
They replaced her breathing tube with a larger one to help with her
with her air leak during the time they were trying to clamp her off.
So while she doesn't sound like a duck anymore Dr. H thought
this might have been a little more than she could handle during that
time and she just didn't have enough time to recover before they had
to make the decision.
So while we are disappointed it is better to give her some more time

than to take her off before she is good and ready. Because once we are
off there is no going back. I think the real reason she didn't come
off today is she wanted to stay nice and stable over the next couple
days so daddy could sneak off and catch a few minutes of the Jayhawks'
games without worrying about her too much.
We will make it next time.
Sofie's Dad

177-179
Day 7 of ECMO
30 Sofia had to move out of her big OR suite and back to her old spot in the ECMO room
this afternoon. She doesn't tolerate
moves very well and her sats are down a
bit after the move, but overall she is hold-
ing steady. The plan will be to move her
back to the OR suite sometime on Sat-
urday. They will attempt to wean her off
ECMO again Saturday night into Sunday
morning, with possible cannula removal
Sunday and then repair surgery Monday
or Tuesday. She is still on the convention-
al vent without nitric oxide, so that leaves
somewhere to go if she needs it at a later time. She also never needed to go back on any
blood pressure medications, since she initially went on ECMO, so she'll have those to
add on if she needs them too. We are still very hopeful she'll be able to come off ECMO
for her surgery.
Sofia's new (old) room
Mommy gets to change Sofia's diaper for the first

time (Tuesday night 3/18)
Daddy gets to put on Sofia's lipgloss

(Tuesday night)

06:23PM (-05:00)
31
180
Day 8 of ECMO - Not a Fan of Thursdays
Well, little Sofia just doesn't seem to like Thursdays very much. Last Thursday was when
she had to go on ECMO, and last night she had a pretty rough night again. Her oxygen
levels weren't as good, and she was having problems getting rid of her CO2. Her sats
were all over from 77%-97%, and they had to increase her flow on ECMO to 390 where
she had been running 280-290 last week. The increased flow has caused her blood pres-
sure to be a little higher, but not so high that she needs medication yet. They repeated
her echocardiogram this morning to see if her PPHN is getting worse again, which could
be the cause of her problems.
This morning she only got 88 on her oxygen challenge test after performing like a rock-
star yesterday and getting 383. Her chest xray this morning showed some more fluid col-
lection in that right lung again, so they have adjusted her vent settings to try to help that.
She also mistakenly received more IV fluids last night than she was supposed to. Her
TPN ran in too quickly, so she is a bit more swollen today and getting some lasix to help
her get rid of that extra fluid. Thankfully her blood sugar and electrolyte levels weren't af-
fected by this. She really seems to have handled it pretty well.
Despite all that she is doing better today. Her O2 sats have been 96%-100% today and
she has been awake looking around for us, stretching her legs, and looking pretty con-
tent to be awake snuggling her Sugarbear even though we tell her to go to sleep and
rest. She is stubborn!! Wonder where she gets that from? We got some cute video today
of her looking around at us that I'm sure is only amusing to us, but I will post it to the blog
for everyone's enjoyment just in case. She is such a cutie!!! I can't wait to be able to hold
her!
Sofia's Mommy
181-194
Setbacks
We are on the CDH roller coaster, that's for sure. Sofia's echo came back this afternoon
showing her pulmonary hypertension ( PPHN) is getting worse again. Her pressures are
now the highest they have been at 89-90, so that is really discouraging. They are starting
her on Milrinone, a drug to help lower her blood pressure. They are continuing to in-
crease her vent settings just a little bit to help that right lung expand a little better. She got
a second dose of Lasix this afternoon to help her get rid of more of her fluid to see if that
helps as well. She's also been very alert and awake most of the day today, so they are in-
creasing her sedation for the first time since she got here. Her Morphine and Versed
have been at 40 and 30 and are going up to 50 and 40 now. She doesn't seem to be in
any pain, but the increased sedation will help her rest a little better, and the Morphine will
also help to lower her blood pressure a little bit.
The plans for weaning off ECMO have changed again, as you might imagine. Every time
we make a plan, little Miss Sofia decides to change it for us! The plan was to try to wean
again tomorrow night and into Sunday morning, possibly removing her cannulas on
32 Sunday and surgery on Monday or Tuesday. Now we will let her rest over the weekend.
They'll reevaluate her on Sunday and possibly try to wean again Sunday or Monday if
she is stable enough. If not, or if the wean isn't successful, we'll discuss going ahead with
the repair surgery on ECMO.
Repairing on ECMO has many risks, but mainly bleeding is the biggest risk. Her blood
has to be so thinned while on ECMO to prevent clots from forming that she's at a very
high risk for hemorrhage during surgery, particularly for bleeding in the brain as well. Both
of these risks are very scary, but if she's not stable enough to come off ECMO that will be
our only option.
Please continue to pray that her PPHN resolves, so she can truly be stable enough to
come off and stay off ECMO!!
Sofie's Mommy

195-202
Sofie's First Movie
Day 9 of ECMO has been a little better. Sofia is responding really well to the Milrinone for
her blood pressure. Her blood pressure came down last night shortly after they started
the medication from 70-75 to 58 and today it's been upper 40's-mid 50's all day. Much
better Sofie! She is keeping her O2 sats around 97%-100% too. Her oxygen challenge
test was a lot better this morning. Yesterday she only got 88 and today she got 297!!
Yeah, overachiever! Her ABG's are also stable and looking good today with great CO2
levels in the 40's. Her chest xray was also better today, showing less fluid on that right
lung and better expansion. Her urine output after the 2 doses of Lasix was very good, so
she's back on track fluid-wise. She slept more last night and today with the increased
dosages of Morphine and Versed. No new plans as of now. They are just letting her rest
and hoping her PPHN resolves some before attempting to wean off ECMO again.
And as promised, here is Sofie's first movie! This was from yesterday when she was so
alert and awake. She's so cute!


Sofie's First Smile - 3.17.08
Make a free ecard - it's easy!

203-205
Photos From Sofia's 1st Week

33
206-208
Day 10 of ECMO
Sofia is holding steady and had a pretty good night. Her oxygen challenge test was 276
this morning, and everything else has been stable. They are going to try to wean the flow
down on the ECMO circuit from 450 to about 300 over the rest of today and tonight and
let her sit at 300 all day tomorrow to see how she tolerates it. Depending on how she
does with that, they will talk about possibly weaning again on Tuesday. If she doesn't tol-
erate it, they will talk about going ahead with the repair surgery on ECMO. One way or
another, she will most likely have her repair surgery sometime this week. We're still hop-
ing she can come off ECMO before surgery, but if not we're ready to get the surgery be-
hind us and try to move forward.
She has been sleeping well since we got here this morning, so she doesn't have her
"Easter outfit" on yet. Never fear, there will be pictures later today!!
Sofia's Mommy
209-213
Happy Easter!
Make a free ecard - it's easy!

CDH Awareness Blood Drive Monday 3.24!!!
Just a reminder that tomorrow is the CDH Awareness Blood Drive at Menorah Medical
Center in honor of Sofia Rose! Menorah Medical Center is located at 5721 W. 119th St.
in Overland Park, which is at the corner of 119th and Nall. (See map below) The blood
drive is in Conference Room 1 off the main lobby at "A" Entrance from 11:00am-3:00pm.
You can make an appointment to donate here. Click on "Find a Drive", then enter spon-
sor code menorahmedctr. There are still appointment times available between 1:15 and
2:45. I know many of you have expressed interest in donating, but are unable to make it
to the blood drive tomorrow. If you want to donate and can't make it, you may contact the
Community Blood Center by calling 1.888.647.4040. For those that already donated at
another location in Sofia's name, thank you for saving a life!! Little Sofia is getting 2-3
platelet transfusions per day, in addition to blood transfusions, that save her life. Your
donation makes a difference!!
I also want to thank my friends, Julia & Melissa, for helping to prepare so much for the
blood drive, for coordinating with Menorah for me, and for being there tomorrow. You
guys are such a huge help, there's no way I could have done this without you!!
View Larger Map

34 Monday, March 24, 2008

214-219
Day 11 of ECMO - Weaning a Little More Today
Sofia did really well over night weaning

down to 300 on her ECMO flow, so
they've continued to wean her down
some more. When we got here this morn-
ing, her flow was at 200 and they are tak-
ing her down to 100 pretty quickly to see
how she does. If she does well, they will
try to wean her completely tonight and
take her off tomorrow, with possible sur-
gery Wednesday. As she goes down on
her ECMO settings, they're increasing her
ventilator settings, since she will have to be taking over and doing the work of oxygenat-
ing without so much ECMO support. Her oxygen challenge test was over 300 today! They
repeated her echo at 1000 this morning to check her pulmonary hypertension again,
which is hopefully getting better. They are keeping her much more sedated now, so she
doesn't waste her energy moving around and being awake. Also, the more she is awake
and moving around and trying to breathe over the vent, the more her stomach and intest-
ines fill with air, which makes it harder for her good lung to work. Her Morphine and
Versed dosages have increased from 50 and 40 to 60 and 50 to keep her asleep today.
Rock Chalk!
220-224
Sofia Passed Her Clamp Test!
Well the original plan today was to challenge Sofie by weaning her to a low setting and let
her sit there overnight. And then depending on how she did, wean her completely tomor-
row. Once they weaned her down completely tomorrow, they would attempt to clamp her
off ECMO for a couple hours to see how she does without it and then take out her cannu-
las and be completely off if she does ok clamped.
The plan changed a little this afternoon. She did so well with her challenge today, that
they decided around 4:45 this afternoon to go ahead and try the clamp test. She did ok
clamped for 2 hours, so they've decided that she will be stable enough to come off ECMO
for her surgery! Her decannulation surgery is set for tomorrow. We are still unsure of the
exact time, but she will be officially off ECMO sometime tomorrow. After the clamp test
this afternoon, they unclamped her and turned her flow back up to maintain her through
the night. They don't want to do the decannulation surgery during the night, so they will
hold tight and wait until tomorrow when the full crew is here. This is really exciting, but at
the same time very scary. We just hope she is truly stable enough to withstand
everything off ECMO, because there's no going back once it's gone. On the other hand,
surgery is much less risky off ECMO, so it's good that it looks like we're proceeding in
that direction. They also repeated her echo this morning and her PPHN is better. Her
pressure was 49, much better than the last echo on Friday which was 89-90!
35
If all continues to go as planned, her repair surgery will be sometime around noon on
Wednesday. So hopefully Sofia will cooperate and stick to the plan this time!! It's going to
be rocky for the next few days, so Sofia really needs some extra prayers to get through it.
Please pray that Sofie continues to be stable off ECMO, through her surgery, and in the
days afterward.
Sofia's Mommy & Daddy

Tuesday, March 25, 2008

225-231
Day 12 (Last Day!) of ECMO
We just talked to one of Sofia's surgeons (Dr. Pablo), and her decannulation surgery is
set for between 3:00 and 4:00 this afternoon. We'll be glad to see the cannulas and the
ECMO machine gone, but at the same time it's so scary. We hope she can do it on her
own! Please pray hard for her today that she'll have the strength to fight even harder and
get those lungs functioning better!
Sofie's Mommy
232-235
So far so Good!!
We haven't got to go back and see her yet, but the Doctors just came and told us that
she is off the ECMO and is doing good. If she continues to be a little superstar through
the night they will most likely do her repair tomorrow afternoon. Thanks for all the pray-
ers and good vibes. I think she is hearing them. We will update later when we know
more.
Sofie's Dad
236-245
Sofie Continues to Rock
Sofia is continuing to do really well off ECMO! She didn't need to go back to the high fre-
quency ventilator. She's still on her conventional vent with a little nitric oxide. They restar-
ted the nitric today at noon at half of what she'd been on before ECMO just to optimize
her lung function. Her vent settings have weaned way down in the last hour and her
ABG's have been really good. Her B/P is holding steady in the low 40's with O2 sats 97-
99%. What a rockstar!! As of now, her repair surgery is scheduled for tomorrow, possibly
sometime around 2:00 or 3:00. We will know more tomorrow morning. Here are some
pictures of before and after ECMO decannulation.
36
246-251
Knock on wood
Sofie and I have had a pretty boring first night off ECMO. She has been keeping her sats
in the upper 90's and her BP in the mid to upper 40's. She just got her latest blood gases
and her CO2 level was 49, which means her lungs are doing a pretty good job keeping
up. Her only real issue tonight has been that her heart rate and temperature are running
a little high. But we have been told that the higher temp is pretty common with babies just
coming off ECMO. And one of Sofie's favorite nurses Sara, who is taking care of her to-
night, thinks the higher HR may be linked to the high temp. So she has been getting
doses of Morphine to relax her and keep her HR down and it seems to be working.
I think she is trying to tell everyone she is ready to get all fixed up today. So let's just
hope she continues to behave and the Doctors agree. When we hear a more definite time
for surgery we will let everyone know.
Sofie's Dad
252-266
Surgery Not Happening Today
Sofia gave us a bit of a scare this afternoon while we have been waiting to hear from the
surgeons. Around 1:00pm she started to get more acidotic, and her CO2 started rising
again. This has been the trend when she has taken bad turns in the past, so we were
very scared since she's off EMCO now. She continued to oxygenate well, but was just
having problems blowing off her CO2 again. She has a fairly large air leak around her ET
tube still, and they think that's what was causing this change. So they switched her back
to the high frequency vent at 100% oxygen, and her numbers improved very quickly.
They gave her more sedation and increased her morphine and versed drips to 70 and 60.
Her blood pressure was creeping back up to the high 50's with the dopamine at 10, so
they dropped down to 9 on it.
37
She seems to be doing much better now, but we are very nervous we will miss her very
narrow window of stability for her repair surgery. The most upsetting news this afternoon
is that the surgeons will not have time to do her surgery today. We feel such a sense of
urgency to get it done while she's doing ok, so this has been really upsetting. As of now,
her surgery is scheduled for around noon tomorrow. Please pray that Sofia continues to
hold steady throughout the rest of today and tonight while she is waiting for her surgery to
be done tomorrow.
Sofia's Mommy
267
CDH Blood Drive Success!
Thank you to all who donated at the CDH Awareness Blood Drive yesterday at Menorah,
including Grandma Cheryl. They were expecting 20 units and ended up getting 31 units
of blood! Way to go everyone! I also know of a few others who had donated recently and
were just a few days shy of being able to donate again, so they are planning to donate
next week in Sofia's honor. Several others were unable to make it to Menorah to donate,
so they donated at other sites, so thank you to you as well! Every unit donated makes a
big difference!
The first annual CDH Awareness Day is Monday, March 31st. Be sure to wear your tur-
quoise in support of all CDH babies, including little Sofia! If you're looking for official CDH
Awareness Day gear, click here. If you would like to order CDH silicone bracelets, you
can find them here. Or click on the pictures below. Also, if you wear turquoise on
Monday, send me your photo at jtmku@yahoo.com and I'll put you on the blog next
week!
Thank you so much to everyone for your support and prayers, it really lifts us up during
these rough times. We are so lucky to have such a strong support system. Sofia even got
an email from her friend, Garrett, who can't wait to meet her when she's all better. Gar-
rett is my friend Melissa's sweet little boy, and he had his Mommy write a special email
from him to Sofie. Here it is...
Dear Baby Sofie -

I love you and hope you get better so you can snuggle with your mommy. I told the East-
er Bunny to bring you a new book and a whistle like mine. I like your pink bow, but I want
you to have a blue bow like Cinderella. I'm going to make you a blue bow, and a card for
your room. I want you to take the tube of your mouth because I can see your mouth.
When you get better I want to see you. ( Exact dictation from a 4 year old )

268-277
Surgery Day!
38
Sofia had a really good night last night. Her ABG's have been very good, and she's still
nice and stable for surgery. She is getting a unit of platelets this morning, so she'll be
good and ready for surgery. She's on the schedule for 1:00 pm, so please send extra
prayers her way at that time. Here is a video of her big move yesterday back to the OR.
(Move #3) Sorry it's a little long! If you fast forward to the end there are some closer shots
of Sofie! We also made a little scrapbook of her adventure yesterday, see it below.
Make video montages at www.OneTrueMedia.com
Make a photobook - it's easy!

278-281
Surgery Update #1
We have kissed her goodbye and told here to behave for the surgeons before they kicked
us out. They should be starting anytime now. Dr. H is going to stay with her through the
surgery so she can come and give us updates. So when we get some news we will try
and let everyone know.
Sofie's Dad
282-285
Surgery Update #2
Dr. H just came in and told us Sofia is doing really well. The surgery actually started right
around 1:30pm, so they are about 45 minutes into it. Her O2 sats have been 95-100%
during surgery. Dr. H said all of her intestines have been moved down into her abdomen,
and the surgeons have said that her defect appears to be pretty large. That's all we know
for now. They will come and talk with us in more detail when the surgery is finished, but I
wanted to let everyone know that Sofia is doing well.
Sofia's Mommy
286-294
Surgery Update #3
We just got another good update from Dr. H. Sofie is continuing to do really well during
surgery. They are just about 2 hours and 15 minutes into it. Her patch is in, and they are
just making sure it's all secure. They also took out her appendix while they were in there
just to avoid having to possibly take it out later if there were other complications. They
turned up her oxygen at the beginning of her surgery to 100% to provide extra support
with all the stress of surgery. But her O2 sats have been 100%, so they started weaning
down her oxygen on the ventilator. It's now at about 60%, which is really good. That
leaves somewhere for her to go afterward when things get a little rocky. Things are going
really well so far, and they are getting closer to being done. Hopefully the next update we
get will be that they are finished, and we can see her soon!
39
Sofia's Mommy
295-318
Surgery Went Great!!
Sofia's repair surgery went as well as the doctors could have hoped. We got in to see her
just a few minutes after they finished. They finished around 4:45 pm, so the surgery las-
ted about 3 hours and 15 minutes. She really did great, and her first blood gas after the
surgery was very good. She just had another gas done that was also very good. She
looks very swollen, and her color is not as pink, but that is very normal after surgery, es-
pecially a surgery as major as the one she had. Her incision is pretty large and looks
pretty painful, but Dr. H and her nurse, Dot, are keeping her sedated and comfortable.
We'll post more details later about the surgery. Just wanted to let everyone know she is
doing well, and came through her surgery with flying colors thanks to the skills of her doc-
tors, nurses, and RTs. And especially because of all your extra prayers. Thank you!!
Sofia's Mommy
319-323
Surgery Details
At 17 days old, after 12 days of ECMO, and 2 days off ECMO, Sofia had her hernia re-
pair surgery. The surgery lasted about 3 hours and 15 minutes. 90% of the left side of her
diaphragm was missing. She had just a small anterior rim of diaphragm, and her stom-
ach, intestines, spleen, and part of her liver had herniated. Her right lung is a normal size,
and the surgeons did say they could see some lung tissue on the left side, but it will be a
few days before we know how much is there.
She did amazingly well during her surgery and continues to be stable this evening. She
didn't need to receive any blood or blood products during her surgery. She received one
unit of blood after surgery, mostly as a precaution, but her blood loss was minimal con-
sidering how invasive her surgery was. Her abdomen is pretty swollen after surgery and
will likely be much more swollen over the next couple of days. After being removed from
her chest, her herniated organs were placed outside of her body while the surgeons
placed a large patch over the area where her diaphragm was missing. Her organs were
then placed in her abdomen once the surgeons made sure the patch was secured. Be-
cause of how much those organs were handled, particularly her intestines, they will swell
after surgery. This is normal and will resolve in a few days. We are expecting the next 24-
48 hours to be pretty rocky and have a few setbacks, but she should pull through it just
fine and really begin her healing process.
Because her defect was so large, she does have a patch. Her patch is an AlloDerm
patch, which is made from donated human skin tissue. It provides a biological matrix for
her own tissue to grow through. The original patch material eventually dissolves, leaving
her new tissue behind. This type of patch will hopefully lessen the chance for reherni-
ation later. However, reherniation is always a possibility, especially with the size of her
defect.
Before the surgery, her heart and lungs were shifted significantly to the right side of her
40 chest. Now that the herniated organs are in their proper place and there is room in the left
side of her chest, her heart and lungs will slowly shift back into the proper position. The
body doesn't like to have an empty space, so the space where the organs were in the
chest is filled with air and fluid right now. For this reason, they placed a second chest
tube on her left side to help remove a small amount of that air. They don't want to quickly
or completely drain the fluid off that space, because it could cause the heart and lungs to
shift drastically over too far to the left. By leaving that fluid in there, it allows a gradual
shift that is less traumatic, and the fluid will slowly reabsorb into the body on its own.
Her incision is large, about 6 inches in length, and goes about 2/3 of the way across her
abdomen. As her Daddy says, that's one big owie! Her skin is closed with sutures in the
layers beneath the surface of the skin. These are called subcutaneous sutures and will
dissolve. The part of the incision on the surface of the skin is closed with a type of clear
gel called DuoDerm that's kind of like superglue.
We are so glad to have this big hurdle behind us, so Sofia can start to heal and get ready
to come home with us. We still have a long road ahead, but this is one major step we
have finally been able to get past. We pray for her continued strength and healing, that
she is comfortable, and feels her Mommy & Daddy are here with her. It's so hard to see
your little baby laying all by herself on an OR table in a big room with a big incision that
looks so painful, and not be able to pick her up and hold her and make her feel better.
Hopefully it won't be long until she is better, and we can finally hold her. Here are some
pictures from her big day and her battle wound. Just a warning, if you have sensitive
eyes, you may not want to look! Thank you, everyone, for your amazing prayers today.
God has been with Sofia protecting her before she was even born, and she is truly a mir-
acle baby.
Sofia's Mommy
Good morning, Sweet Sofia!
Sugarbear is fixing Sofie's hair
41
Seriously, Sugarbear, a fauxhawk?
Getting ready for the big surgery
One of the Respiratory Therapists, Dot

(Sofie's nurse), Dr. P (anesthesia), & Dr.
H
Sofie's pretty little tummy before & after

the surgery
42
The Big Owie! (Don't worry, it'll get better)

324-333
Still doing good
While it is still early and things could change at any time this is one proud poppa. It is al-
most 12 hours after her insides were on the outside and her numbers look great consid-
ering everything she went through. I stand over her and would trade places in a minute,
but I don't think I would be 1/2 as tough as she is. It's almost like she is telling me "don't
worry dad, I got this under control." We still got a long way to go but I think she will be
able to handle anything in front of her. Keep the good vibes coming her way to get her
smoothly through these tricky hours after surgery.
Sofia's Dad
334-342
Rock Chalk Sofia!
Sofia is doing great today, even better than expected! Her blood gases have all been
really good throughout the night and today. She is on low settings on the high frequency
ventilator, and she still has her nitric oxide, but she is close to being able to go back to
the conventional vent soon. She is only needing 46% oxygen right now on her vent, and
is keeping her O2 sats between 95-99%. She is keeping her CO2 levels way down today
and seems to be ventilating much better. They have increased her pain medication over
the night and some more today to keep her comfortable. Her morphine is now at 100 and
her versed is at 70. She gets extra doses of morphine, versed, and fentanyl when she
needs them. She is less swollen today than she was yesterday, and her incision is
already starting to look better. She hadn't had a wet diaper in a few hours last night,
which they weren't too surprised about since she was so heavily sedated. So she got her
foley catheter back and her urine output is ok. Overall she is doing fantastic and has
been very stable since her surgery. We couldn't ask for more!
Sofia is just resting and healing and getting ready for the big Jayhawks game tonight.
Rock Chalk!
Sofie's Mommy 43
Make a postcard - it's easy!

343-358
Sofia Continues To Amaze Us!
We were able to see Sofia's chest xrays this morn-

ing from just before her hernia repair surgery and
then her most recent one after the surgery taken at
11:30 am today. A lot of CDH babies have only the
one good lung on the unaffected side and just a little
lung bud that develops on the affected side. Be-
cause so many organs and so much bowel is herni-
ated into the chest cavity, it keeps the lung on the af-
fected side from developing. Sofia's right lung on her
unaffected side grew very well to a normal size, even
though her heart was shifted over into its space.
Sofia had most of her bowel, her stomach, spleen,
and part of her liver herniated. On the before xray,
you can see she has bowel almost up to her clavicle!
But still she continues to amaze everyone. On her
"after" xray you can see her left lung beginning to in-
flate and expand, and it looks almost full sized!!!
Way to go Sofia! To us, this is truly a miracle!
Sofie's Mommy
Before Surgery
After Surgery
Posted by Kenny and Jennifer Miller at 01:09PM (-

05:00)
359-364
Superstar!
I was so excited about the chest xray earlier, I just realized I forgot to post an update
about last night and today. Last night Sofia's heartrate was a little high, and she seemed
more agitated and in more pain. Last night her little fists were clenched so tight. I could
tell she was in pain. Her nurse was giving her pain meds, but they just weren't quite
enough to catch up with her. Over the night and this morning, her morphine and versed
drips were also increased a few times to help manage her pain better. Her morphine is
now at 140 and her versed is at 110. She seems to be more comfortable and relaxed
today.
44 Her blood gases continued to look good all night until around 5:30 this morning, when her
pH was a little acidotic, and her CO2 had
risen from the 40's to mid 60's. Her
heartrate got up to the 190's, and her
blood pressure was in the 30's. To help
raise her blood pressure, they increased
her dopamine drip to 12. They did a chest
xray and found that she had a large air
leak on the left side, and her chest tube
on that side needed to be repositioned as
well. They air leak had caused her heart
to shift back over to the right, compress-
ing her good lung, which is what caused the change in her blood gases. They inserted a
needle into her chest to withdraw a large amount of air and fluid and then adjusted her
chest tube, and she quickly got better. Her gases all day have continued to be very good
and stable. Because she lost quite a bit of fluid from her chest last night, they needed to
replace that volume, so she is getting a unit of blood right now.
Her temperature was a little unstable overnight and today, and she had some green
drainage on the dressing around her chest tube site on the right side. They changed the
dressing, and her skin wasn't reddened at all around the area. The site itself didn't really
seem to have any green drainage, so that was good. As the day went on, her heartrate
remained elevated in the 180's, and her blood pressure was running a little lower in the
upper 30's - lower 40's. Her white count was also elevating, so they sent some cultures to
see if she might have an infection. It will be 24 hours before the culture results are back
to know for sure, but they went ahead and started her on some antibiotics - gentamicin
and vancomycin. They will repeat her labs in the morning, and hopefully she will start get-
ting better after about 24 hours. Sofia's Mommy

365
Sweet Little Feet
Sofia had a better night last night. Today she has been stable. Her blood pressure is still
a little on the low side, and her pulse is still high, but her blood gases have all been very
good. She's still on the high frequency vent with her oxygen setting at 65%. They reposi-
tioned her chest tube on the left side around noon to try to get some more of the air and
fluid around that left lung to come out. She just had a chest xray at 4:00 pm, and it
showed a little bit of an improvement in getting that left lung reexpanded after that big air
leak yesterday morning.
She seems very comfortable today and looks like she has good pain control. They seem
to have found a good level for now with her morphine and versed drips, so they haven't
changed them from yesterday. Her morphine is still at 140, and her versed is still at 110.
She hasn't needed as many extra doses of pain medicine today.
Her incision is a lot less red, and her white count has gone down since yesterday with the
antibiotics on board. She has a low grade temperature again this afternoon. It's still early,
but her cultures so far have shown no growth of bacteria, so that's good news. We won't
know for sure on those for another day probably.
45
Her chest and head are still very swollen. They are replacing the fluid volume that drains
out of her chest tubes. She gets 1/2 cc of albumin (albumin is a large protein found in the
blood) for every 1 cc of fluid that drains from her chest tubes. She's also getting 2-3 addi-
tional boluses of albumin per day to help draw some of the fluid that's causing her swell-
ing back into her vascular system, so she can pee it off. This should help not only her
swelling, but also her blood pressure and heartrate.
Yesterday afternoon they removed the dressing and drain from her ECMO cannula in-
cision site. The incision is about an inch long on the right side of her neck, and it's already
healing so well! I think you'll barely be able to see where it was once it is all healed. She
already has 5 major battle wounds, so hopefully they will all heal as well as that one.
We actually ventured out of the hospital yesterday afternoon for a couple of hours to try
to find Sofia some furniture, so she has a place to rest her cute little head when we take
her home. We didn't find anything we liked yesterday, so we're still looking, but Daddy did
pick out some little socks to keep her feet warm. And of course I had to make a little
scrapbook of her first socks :-) . . .
Make a scrapbook - it's easy!
366-367
Turning The Corner
Sofia is continuing to improve this afternoon and tonight. We all haven't decided what did
it for sure. Dr. J repositioned her chest tube around noon today. Then around 4:00 pm or
so, her nurse Sunny turned her to her back and within a half hour, 16cc of fluid had
drained from that left chest tube. Then Dr. H came by for a visit, and Sofie must have
thought she better shape up for Dr. H. But I really think Sofie just finally breathed a sigh
of relief when Davidson missed their final shot at the buzzer! Whatever it was, she defin-
itely turned a corner this afternoon and has improved a lot.
They were able to wean her oxygen setting on her vent down to 34% late this afternoon.
Her blood pressure has improved and is back up to 45-50, right where they want it to be.
Her heartrate has come down from the 170's where it's been the last couple of days to
the 150's. And her O2 sats are 97-100%. She has been doing so well, Dr. J was finally
able to start weaning her high frequency settings a little tonight. Her MAP (mean airway
pressure) was able to come down to a setting of 14 from 16. This just means she is need-
ing less support from the high frequency ventilator. Her oxygen only had to be increased
to 44% with this change to keep her sats in the upper 90's. If she continues at this rate,
she may be ready for the conventional vent in a day or two! Go Sofie!! She wants to be
off high frequency so she doesn't have to be so sedated for the Final Four next weekend.
Don't forget-tomorrow is the first annual Congenital Diaphragmatic Hernia Awareness

Day! Missouri, Kansas, and Kansas City, MO have all signed official proclamations, along
46
with 32 other states and 13 cities. Several more are pending. Mexico is the first country to
sign a national proclamation and the U.S. national proclamation is in the works. This is
amazing considering Breath of Hope just started this campaign for awareness 6 months
ago! Thanks to the determination and hard work of parents, grandparents, friends, and
family members affected by CDH, this awareness campaign has really caught fire, and
more people are learning about CDH every day. Raising awareness will help to increase
research that might find the cause of CDH and someday may lead to a cure or even bet-
ter - prevention!! Wear your turquoise tomorrow to support this cause, and try to tell at
least one person about CDH. It will make a difference! Don't forget to email me a picture
of you wearing turquoise to show your support for Baby Sofia. Please send them to jt-
mku@yahoo.com and I'll post them to the blog. Here is a little preview of some of Sofia's
pals getting ready for CDH Day...
Sofia's Mommy
Make a slideshow - it's easy!


368-372
Might Be Switching To Conventional Vent Today!
Sofia is doing pretty well today. They weaned her MAP (mean airway pressure) down
again on her vent to 13 and are planning to try her on the conventional vent today! She
has always had a big air leak around her ET tube, even though it's an appropriate size.
They even changed her to a 4.0 when she was on ECMO and it still leaks. So it appears
she has the world's largest airway. This is one reason she likes the high frequency vent
better, because it reduces her air leak, so we'll see how she tolerates the conventional.
She is getting her post-op echo today to see if her PPHN is better so they can hopefully
d/c the milrinone and start weaning the nitric oxide.
Her blood pressures and heartrate are better today now that she's had 24 hours of antibi-
otics, and she is peeing more since her albumin replacements. She'll get a dose of Lasix
today to help her get rid of some more fluid too. Her chest and head are still so swollen!
She had a positive culture (she has an infection) already last night, so I'm sure that had a
lot to do with her low b/p's and high hr's the last couple of days. Turning her yesterday af-
ternoon released a bunch of fluid from that left side of the chest, and she immediately
started doing better with everything, so it's kind of a combination of things that's really
helped her.
At any rate, it looks like she's trying to turn the corner. She's still really sensitive to posi-
tion changes and desats to 70's-80's occasionally when she's on her right side. On her
chest xray this morning, there is more fluid accumulation and less air around the left lung,
so hopefully that air leak is resolving, and now some of of the fluid will start to reabsorb
and that will get better.
She also had an ultrasound of her superior vena cava (SVC - large vein that carries
deoxygenated blood back to the heart from the upper body) this morning to rule out the
possiblity that an obstruction of her SVC could be causing all the swelling in her chest
47
and head. This is a scary condition that could be caused by a number of things. We may
have results back late this evening or tomorrow. I'll post more if anything develops with
that, but we'll hope this isn't the case.
I'm so excited because in rounds today, they started talking about when to do her post-op
MRI. She's never had one because she's been so "hooked up" her whole life, so she
couldn't make the transport down to radiology to go through the machine with all of it.
They want to do it when she is about ready to come off the conventional vent, so they
can sedate her more easily while she is still intubated. Then after they do her MRI, she
might be extubated. Dr. S threw out possible MRI on Thursday today, so that would mean
they think she might possibly be ready to be extubated as early as Thursday or Friday of
this week!!!! We might get to hold her in a few days!! I'm so excited. She's 3 weeks old
today, and she's never been held. It makes me so sad for her. Hopefully she'll continue to
behave and take big strides toward being tube free!!
Sofia's Mommy
373-377
Celebrating CDH Awareness Day On The Conventional Vent!
Little Sofia decided the best way to celebrate CDH Awareness Day was to switch to a
conventional vent. Yeah Sofia!! She's been on the conventional vent for about an hour
now and is doing well on only 50% oxygen.
Results from her echo at noon came back really good. Her pressure is now at 41 down
from 49 on the last echo, so her pulmonary hypertension is getting better. They will stop
her milrinone today, so that's one less med. They are still weaning down her dopamine.
It's at 8 now and her pressures are stable around 50. Her hr has been in the 140's today,
so much better than 170's!
The swelling in her face is a little better than it was this morning. She could actually get
her eyes open a little. Her poor little ears are still so swollen, they look like they are al-
most swollen shut. The preliminary reports from her SVC ultrasound this morning all look
good too, so that is a big relief. Dr. H thinks now that she is back on the conventional vent
and she can move around more, her swelling will continue to get better. She also got a
dose of Lasix and is peeing up a storm right now, so that will help a lot too.
So now she needs to continue to do well on the conventional vent. Then they can start to
wean her nitric oxide in the next day or so. Hopefully she'll get rid of the dopamine soon,
and that will be another med gone. That would just leave her maintenance fluid, TPN, lip-
ids, vancomicin, gentamycin, morphine, and versed.
She'll continue the antibiotics for a few days to be sure her infection is gone. She did
have one positive blood culture in addition to the positive culture from her right chest tube
site. They are repeating her blood culture today and also sending a trach culture from her
ET tube.
Once she no longer needs her chest tubes (hopefully in the next few days), they can be
removed and we could hold her while she's on the conventional vent. We can't wait!!!
48
By the way, keep the turquoise pictures coming, they are great!! I also got an email from
our friend, Megan, in Lawrence. She took 4 coworkers (all wearing turquoise), and they
all donated blood today in Sofia's honor! Several of Kenny's coworkers have also gone to
the Community Blood Center and donated blood in Sofia's honor as well. Thanks guys for
spreading CDH Awareness and for donating blood - you guys are awesome!!
Sofia's Mommy
49
Sofia: Comments
1. Re: Bringing Everyone Up to Speed...

by:congenitaldiaphragmatich February 04, 2008 at 11:00 PM CST
Hi Jennifer!
Wow, that's quite an update! :) I am keeping you in my prayers. Please

let me know if I or CHERUBS can help in any way or if you need to talk or
have any questions about CDH.
Dawn
President, CHERUBS
http://www.cdhsupport.org

by:sng2mi February 02, 2008 at 11:00 PM CST
Jen
I only knew you were expecting by you xmas card and then to hear all of
this....wow! It must be a really trying time for you and your family. But as
everyone less has said he/she could not have been gieven any better
parents than the 2 of you. I wish you the best and will be watching the
blog for more updates.
PS I miss you all at Menorah!

by:Ashley L. February 07, 2008 at 11:00 PM CST
Wow Jen, That really helped me understand the circumstances. All that
knowlege will really help you. I pray for you everyday. I feel baby miller is
going to do great things in the future. Love ASh and Chad

by:Michael B. February 02, 2008 at 11:00 PM CST
Kenny and Jennifer,
You truly are two wonderful people, and while I can't imagine what you
two must be going through, I also can't imagine any baby luckier than to
have the two of you as parents. Thanks for sharing this, and know that
you have the support and love of friends, family and co-workers. Let
Steven and I know if we can help in any way.
5. Re: OB Appointment Today

by:anonymous February 13, 2008 at 11:00 PM CST
Kenny & Jennifer - I've gotten to know you through your site through
Elaine Larson (one of her Deb group friends). You both and baby are on
my prayer list and praying for miracles to happen. Praying for
50
peace,comfort and patience as you are on this journey. God has allowed
you to experience this awesome journey and He is able to do mighty
things.
In Him - Bev H.
6. Re: OB Appointment Today

by:cherie February 12, 2008 at 11:00 PM CST
Hey Jen
I was shocked to hear that you were already dilated and put on bedrest.
You and your family are in my thoughts and prayers and I pray that
everything in the next few weeks will go well. If there is anything at all
that I can do, please let me know. Take care of yourself and that baby. I
will wait to hear more.
Cherie
7. Re: Perinatologist Appointment

by:Cindy A. February 17, 2008 at 11:00 PM CST
Like Amy, I will also be sending you some "stay inside baby" vibes. My
daughter Claire was born with LCDH this past June at 36 weeks. She
was in the hospital for 3 weeks and is doing great today.

by:amyakababa February 16, 2008 at 11:00 PM CST
Keeping you in my thoughts. Liviana went home today after only 31 days
in NICU. I will send you "stay inside baby" vibes. Wishing you the best!

by:elizabeth d. February 16, 2008 at 11:00 PM CST
Bored is good - enjoy the rest of your mind and body now - relax - you are
doing everything you should and then some for this little one.
Once they arrive - shock and awe - they love to do that to the doctors and
nurses (as you know).
Keeping you in my thoughts, prayers and Lung Function chants,

Elizabeth

by:erinrosfeld February 16, 2008 at 11:00 PM CST
Jen & Kenny--

You are in my thoughts and prayers. Jen, it must be driving you crazy to
be on bed rest, but I am praying that you are able to relax and let the
baby grow. :)
51
We are praying for you! Enjoy your rest, it's a lot harder when they're
outside than it is when they're inside. :)
I think of your family often and have passed your story on to my church.
We are all in united prayer for healing, health and peace for your family.
We will pray that baby Miller stays in and "cooks" so more.

Just found your site this afternoon. I am the gma of a 4 mo cdh
survivor(clearlyrandom.com) named Sabrina. She is thriving with no
feeding tube or o2. Just want to let you know that survival is there and
there is hope. I will keep you in my thoughts and prayers at this time in
your lives. I pray that the MD's skills are great.
12. Re: Weekly Update

by:themom February 23, 2008 at 11:00 PM CST
Hi guys,
Sorry you are on bed rest. There is certainly nothing to watch on tv.
Maybe you can get caught up on all the DVDs out there. You certainly
won't have any time for that after the baby is born. We think of you both
often and continue to keep you in our prayers...all 3 of you. Take care
Love, Lori and Roger

by:Gail k. February 17, 2008 at 11:00 PM CST
Hey Jennifer,
That was good news about your visit today. After speaking with Cheryl
yesterday I was worried that they may be heading to KC earlier than
Tuesday. She told me all about the Turkey she had been cooking. Lucky
you, she got all of mom's cooking skills. I know you are being well taken
care of by Kenny and the rest of your family. I just keep praying for a
March baby. Take care and try to enjoy some of that wonderful daytime
TV. HAHA. Love Gail

Millers
You are in our thoughts!!! Bed rest yuck but is the best thing for you right
now. I was on partial bedrest with Bryden it is boring but I miss the rest
now since things will be so busy after the baby comes but wonderful.
Thanks for the updates this blog is so wonderful, keep us posted and
52
your feet up and head high!! Christal Casey & Bryden Crane

by:Bethany Wurdeman February 17, 2008 at 11:00 PM CST
Hello Jennifer,
I just wanted to stop by and leave a note to you. Please know I am
thinking and praying for you. You are almost there. I had Brody LCDH at
just 36wks and he was 8pd 4oz. He did Great!! If you need anything or
have any questions please just ask.
Bethany - Member of BOH
Mother to Brody LCDH
CP Name: BrodyJacksonMartin
16. Re: 2 Weeks Down...? To Go

Good luck on everything. My daughter and husband just went through all
that you are doing right now. Check out Clearlyrandom.com for Sabrina's
story. I hope that you have the same course as Sabrina's and Liviana's.
I, too, was an Ob nurse (now retired) so I knew too much, but not enough.
I will be keeping all of you in my thoughts and prayers. Keep the faith,
and hang in there.
Jean/ Sabrina's gma
17. Re: No News Is Good News

I found your blog through Baby Claire's. You guys are in the homestretch
now. You will be in our thoughts and prayers as you approach your due
date. We will say many LUNG CHANTS for you and hopefully Baby
Miller (my vote is a girl) will be able to avoid ECMO but just remember
that it's another machine to help the baby. ECMO saved our baby's life
and he has no long term effects from it. I'll be sure to check up on you
guys now that I found your blog.
Love
Vicki
mom to Jack, 8/20/08, LCDH & ECMO

by:CHRISTINE G. February 25, 2008 at 11:00 PM CST
Hey thanks for the shout out with the happy birthday

by:Melissa L. February 27, 2008 at 11:00 PM CST
Jen,
The 3 of you are still in my prayers. I know that bed rest can be a bore,
53
but every day that Baby Miller has to get stronger is a blessing. If you
need a different selection of books or videos, please call me or have
Kenny tell Steve and we'll send something over to you.
Lee

Hi guys,
I know you are getting close to that due date. Make sure some one give
us a call or email. I will be in New York during your due date, but Roger
will be waiting to hear.
All is going well here, I dislocated my elbow at the end of Jan. and that
has changed my life a bit , but now I am doing physical therapy and
heading the right direction.
Take good care of yourself and know you are in our prayers and in our
thoughts.
Lori

by:Christine L. February 25, 2008 at 11:00 PM CST
Jen you both are huge inspirations and blessings to everyone whom
reads you're blog. Thank you for sharing! You're in our prayers daily.
Things don't always look easy but the great thing God will always bring
peace within us to overlook the storm. I haven't been able to drop off to
Mel but thank you for blessing Shaylin and I this Christmas. My coat is
amazing...
Many Blessings and Love,

Christine
22. Re: Special Prayer Request

by:Staci G. February 28, 2008 at 11:00 PM CST
Jennifer and Kenny,
I am so glad you took the time to create this blog. What an insperation
you are. Baby Miller, you and Kenny are in my thoughts and prayers.
Stay in bed! Best of luck in the weeks to come.
Staci
54
23. Re: CDH Awareness Day in Kansas City!
by:Kristi L. February 29, 2008 at 11:00 PM CST
YEA!! I am so glad that you got the official Proclamation from Missouri!
We'll keep hounding Sebilius' office for CDH. We won't settle for less than
3 for 3.

by:Melissa L. February 29, 2008 at 11:00 PM CST
Congratulations on your successes in raising awareness of CDH.
Winning 2 out of 3 in such a short amount of time is amazing. Hopefully
KS will come around. When we were in college, the opinion was that
trends started on the coasts and took 5 years to reach KS (maybe it was
just Manhattan), so this is no surprise.

by:aimee March 03, 2008 at 11:00 PM CST
Great News!! Let's hope Kansas comes around
26. Re: Baby Miller Has An Induction Date!

by:thenanny March 02, 2008 at 11:00 PM CST
The 10th is my birthday, so I'm excited about that! I know it'll be a good
day!!! :-)

by:Gail k. March 02, 2008 at 11:00 PM CST
WOW!!! You are one amazing girl, I read about the proclamation and that
is just remarkable, that you were able to get this message out. I talk about
you and CDH alot at my workplace and we will all be wearing turquoise
on March 31st, think I will even wear it on March 10th. What an exciting
day that will be for you and your family. I will continue to pray for you and
Baby Miller and your friends from Iola. Enjoy this last week of daytime
TV as that is about to end. Take Care Love Gail

by:anonymous March 02, 2008 at 11:00 PM CST
That's so exciting that you have a date! We will be praying extra hard on
the 10th for baby Miller. We continue to trust that the Lord will keep you
and your baby strong.
LeAnn Church

by:Christine L. March 04, 2008 at 11:00 PM CST
Jen you are definatly an amazing girl, strong, humble, loving and so
55
courageous. Both of you are!! Thank you for keeping us all updated.
You're in my prayers and heart! I'm excited to hear more great news
about this blessing baby!
Much Love and Strenght towards you,

Christine

by:kellyhigh March 03, 2008 at 11:00 PM CST
I am so excited, nervous, stressed, and overjoyed for you all at the same
time. I will be wearing turquoise on the 10th and the 31st. I have been
avoiding calling you, wanting to let you rest. I hope you are feeling great.
I miss you!! Maybe I can visit you soon. Would you still like me to take
pics at delivery and theresfter. I would be honored.

by:Vicki Jensen March 05, 2008 at 11:00 PM CST
I love your blog and I can't wait to find out if Baby Miller will be a boy or
girl. You guys will be in my thoughts and prayers next Monday. I'm
praying for some big lungs with great function!
Vicki
mom to Jack, ECMO & LCDH, 8/20/07

by:aimee March 03, 2008 at 11:00 PM CST
I'm so excited to be an aunt!! Praying everyday for my little niece or
nephew! Gonna stop by this weekend when I get a chance!! Love you
guys!!

by:Melissa L. March 04, 2008 at 11:00 PM CST
Prayers and hugs to all of you.

by:debbuhrman March 03, 2008 at 11:00 PM CST
Kristi's mom, Elaine, asked a group of friends to pray for you and your
baby. I have been following on your blog and I just thought it would
encourage you to know that people in Hesston, KS are lifting you up in
prayer. I'll be wearing turquoise on Monday, March 10th and the 31st.
Blessing to you.
Deb Buhrman

by:Cindy A. March 02, 2008 at 11:00 PM CST
56
Wow, only 7 more days! Better start nesting if you haven't already ;-)
My thoughts and prayers are with you and your baby. I will be watching
your blog for updates next week.
Cindy
mom to Claire, LCDH, 6/7/07
36. Re: CDH Awareness Blood Drive

by:Erin F. March 08, 2008 at 11:00 PM CST
Jen--
I am praying that all goes well tomorrow. I hope that you will have a safe
and healthy delivery and that baby Miller will do well. I know you probably
won't get much sleep tonight, but pray that you have a restful night and
that you are at peace. How exciting it must be to think of seeing your little
one for the first time.
--Erin

by:Cindy A. March 08, 2008 at 11:00 PM CST
Sending lots of prayers your way tomorrow...
Cindy
mom to Claire, 6/7/07 LCDH

by:Gina J. March 07, 2008 at 11:00 PM CST
I am the mom of a CDH baby born on Oct. 9th at Johns Hopkins and he
is still in the hospital. Wyatt's blog is
http://wyattjameskoger.blogspot.com/ I just wanted to tell you that you
and baby miller will be in our prayers on Monday. Your life will change
forever and you will go through many ups and downs, but keep the faith
and think positively. You are in our thoughts.
Gina
(Wyatt's mom)
39. Re: KS Proclaims the Entire Month of March CDH

Awareness Month!
by:Gail k. March 10, 2008 at 12:00 AM CDT
You and your Parents should be very proud of yourselves for all you have
accomplished in bringing CDH awareness to Missouri and Kansas. If I
ever need to get something accomplished I will know who to contact. You
guys are just amazing!!!!!!!!!!!!
57
Love Gail
40. Re: KS Proclaims the Entire Month of March CDH

Awareness Month!
by:Debe March 11, 2008 at 12:00 AM CDT
Good for you!!!! Steve, your persistence paid off, right?
WELL DONE!!!
41. Re: The Countdown has Begun

by:anonymous March 10, 2008 at 12:00 AM CDT
I'm so excited for you! I can't wait for Baby Miller to get here. I'm thinking
of you and wearing my Turquoise for him/her.
love,
ashley

by:Melissa White March 08, 2008 at 11:00 PM CST
Congratulations to you too, you must be so excited to meet your baby! I
have been following your blog, I graduated HHS with Aimee and found
your blog on her website. My thoughts and prayers are with you for the
best possible labor and delivery.

by:jennm March 10, 2008 at 12:00 AM CDT
Wishing you the best and sending you lots of thoughts for strength and
peace.
Jenn Miller

by:Melissa L. March 10, 2008 at 12:00 AM CDT
You must be so excited to be ready to start the end of your pregancy and
the beginning of Baby Miller's new stage of life with you. I know you can't
wait to meet your precious baby. Please post updates and pictures.
Remember that the 3 of you and your medical teams will be prayed for
many times today.

by:amyakababa March 10, 2008 at 12:00 AM CDT
I'm keeping you in my thoughts and prayers today. I can't wait to learn
about he or she! It is an amazing, up and down journey and know that
we are all here to support you through all of it.
Amy
58
Liviana's Mom

My office has its turquoise on for Baby Miller. We are praying that you
have a smooth & quick
delivery and everything goes well.
Take care of yourself and Baby Miller. Can't wait to meet the newest
addition to the Miller family!!!!!!
Love Gail
47. Re: It's a Girl!!

What a beautiful name! I'm so happy for you and your family! You are all
in my prayers.
Tracy Pierron
(Amanda and Andrew's friend and fellow KU fan!)

Congratulations! I love everything about her. I bet she is beautiful. I can't
wait to see pictures of her. I will keep praying for you guys.
love,
Ashley and Kelly

by:Cindy A. March 10, 2008 at 12:00 AM CDT
Congrats on the girl! Sofia Rose is such a pretty name. I'm glad she is
doing good so far and will continue to pray for her. I will also pray for a
speedy recovery for Jennifer so that she can go see Sofia in Kansas City
soon.

by:Patricia C. March 10, 2008 at 12:00 AM CDT
Congrats! We can't wait to meet your little princess! Cadenne sends
hugs and kisses!

Congratulations!!!
Kim & Roberta
59
Congrats on your precious baby girl. We will continue to pray for you all.
Adrian and Feroza

by:thenanny March 10, 2008 at 12:00 AM CDT
Congratulations!!! Sofia Rose is a beautiful name and she was born on a
GREAT day (my birthday)! :-)

Oh how wonderful and what a beautiful name for I'm sure a beautiful girl.
I can't wait for more updates and to see pictures of the little angel.

Congratulations! The 3 of you will continue to be in our prayers. Shelly
Willhoite

by:lee-happilywearingturquo March 10, 2008 at 12:00 AM CDT
Congratulations on the arrival of your precious new baby. Sophia Rose is
a beautiful name. We'll hope for more encouraging updates and definitely
pictures.

Congratulations on Sofia Rose's arrival. Girls are tough, so with lots of
prayers (for surgeons and neonatologists, too),and expert care, she
should do as well as Sabrina and Liviana. I will be keeping you in my
thoughts and prayers.
Jean N.--Sabrina Sachs gma.

Hey Jennifer & Kenny
Congratulations!!!!! I'm so happy that everything went well. I can't believe
I was right and that it was a girl, just like I predicted!!!! What a beautiful
name Sofia Rose has.Even though I haven't seen her yet, I think the
name is the perfect name for her. I understand she has alot of
red/blonde hair. Now, she isn't singing the fight song yet is she? Can't
60
wait to see the pictures. Cheryl was one very excited Grandma!!! I can't
wait to see her in April. Sounds like she might be home by then if she
continues to do so well. Take care of yourself, we will continue to pray for
all of you.
Love Great Aunt Gail

Congratulations Mom & Dad! We are so excited for you both. We will
continue to keep you all in our prayers. Can't wait to see her. Don't
hesitate to let us know if you need anything.
Amandrew

Congratulations!! Jen and Kenny. What a beautiful name, Sofia Rose
(esp. the middle name!) You have all been in my thoughts and prayers.
Got your blog address from the girls at work. Along with her many, many
friends, I will follow little Sofia's progress as you keep us informed. Glad
to hear you are doing well, Jen, although didn't doubt for a minute that
you would. Congrats to you all!!! Rosemary St.A

Congrats mom and dad. I am sure she is perfect. I am still continuing to
pray for all of you. Can't wait to see pictures of this little miracle.
Andrea

by:deborahraney March 10, 2008 at 12:00 AM CDT
Congratulations! I love her name. Keeping all of you in my thoughts and
prayers. You've done a beautiful job of chronicling your experiences. I
know you've been an encouragement to so many others going through
this, and a wonderful testimony of faith. God bless you all.
Deb Raney
(a friend of Kristy Larson ?'s mom - sorry, Kristy, I don't know your
married name!)

Congrats guys. I am so glad that things are well! I love the name. I look
61
forward to seeing her. I will keep Sofia in my prayers.
Janet and Dale

by:Melissa White March 10, 2008 at 12:00 AM CDT
Congrats you two! What a beautiful name for, I am sure, a beautiful little
girl!

by:Vicki Jensen March 10, 2008 at 12:00 AM CDT
Congrats to Mom, Dad & Family! We're praying for Sophia. Fight fight
fight....breathe breathe breathe!
You can do it Sophia!

Love
Vicki
mom to Jack
ECMO & LCDH, 8/20/07

by:Erin F. March 10, 2008 at 12:00 AM CDT
Congratulations! So thankful that the delivery went well and praying for
continued healing and wisdom. Praise the Lord!

by:andie March 11, 2008 at 12:00 AM CDT
This is Bobbie's mom and her cousin Andie We want to Congratulate you
on you beautiful baby Girl. You guys are in are prays and we hope the
best for you and your family.
Andie Gowen & Mary Jo Newton

Congratulations!!! Your are in our thoughts and prayers and will make
wonderful parents!! Can't wait to see your little bundle of joy
Christal Casey and Bryden Crane
69. Re: Pictures of Sofia

She's so beautiful. And that's one proud papa! I'm glad Kenny can be
right there with her. I can't wait for more pictures.

62
Checking in on Sofia was one of my first priorities this morning. She is
SO beautiful. I am so excited for you to have your beautiful baby girl
finally here. I will continue to check in. It can be a roller coaster but you
have much support, thoughts, prayers and lung function chants!

by:Debe March 11, 2008 at 12:00 AM CDT
Oh my, Ms Sophia Rose is beautiful and strong! To watch your slide
show brought tears to my eyes. Many many blessings to you all!
Much joy to you all - Mom, Dad, Grandparents, and Ms Sophia!

Jennifer & Kenny
You have an adorable baby girl. Can't believe how much she reminds me
of Kenny when he was a baby. The pictures were great. Take care of
yourselves. Sofia is a wonderful blessing to our family.
Love Gail

Jenn and Kenny,
Sofia is a beautiful name and she is gorgeous baby! I must say from
these pics she looks like Kenny. I am so very happy for the both of you. I
know its hard but you need rest too, don't forget. God bless the 3 of you.
My prayers are with you all.
Congrats again.
Janet N

by:Kate K. March 11, 2008 at 12:00 AM CDT
Now Kenny is definitely outnumbered with all the girls in the house! Sofia
is so beautiful. It was nice to see the slideshow so soon! Thank you for
sharing it!

Jennifer and Kenny,
What a beautiful baby girl! If there is anything I can do please let me

know.
63
Congratulations,
Bobbie

Jenn and Kenny
What a precious baby girl God has blessed you with. She looks just like
her daddy. Jennifer take care of yourself and enjoy your little girl. We will
be praying and thinking of you guys. May God put his healing hand on
Sofia.
Congrats
Rachel Burkholder

She is just beautiful! Best wishes and lots of prayer coming your way!
Carrie mom to Noah LCDH 6/7/07

by:stevet March 11, 2008 at 12:00 AM CDT
Jennifer and Kenny
Congratulations. Sofia is beautiful. What a blessing for you all.
Everyone at the office is excited for you. You will continue to be in our
prayers.
Steve T.

by:Bethany R. March 11, 2008 at 12:00 AM CDT
She is SOOOO Beautiful!!!
She looks like her Daddy!!
Mommy get lots of rest before you leave the hospital. You will need it.
Thanks for the Updates and the pictures. Prayers are being sent her
way!!!
SMILE,
Bethany
Mother to Brody LCDH 12-14-06
CP Name: BrodyJacksonMartin

What a gorgeous little girl. Her beautiful name fits her. Congrats. Jenn
make sure you are taking care of yourself too. Always in my thoughts and
64
prayers
Andrea

Hey you two, SHE IS BEAUTIFUL! I am so happy for you both. I love
the website and the photos. Looking forward to see more. Get some
rest, you're gonna need it.
Take care,
Sherrie Thompson

All of us CDH moms are thinking of you both and your beautiful, Sofia.
Many prayers are being said for your family. These babies are so strong!
Rebecca
mom to Hannah, LCDH 11-14-06

Jenn and Kenny,
Congratulations on Sofia she is so beautiful. I will continue to send

prayers up for healing and protection as well as strength and
encouragement.
The two of you are so blessed. Remember to take care of yourself and
each other.
Again congratulations!
Your Cousin, April Kroenke

by:thecottrellfamily March 11, 2008 at 12:00 AM CDT
She's definitly a daddy's girl! Wow she looks just like Kenny!
Congratulations and you are in our thoughts.
Megan, Wade, Cecilia and Finn

by:joel March 11, 2008 at 12:00 AM CDT
Jennifer and Kenny,
65
Congratulations on the new baby! She is a beautiful girl. I hope
everything goes well with all that is going on. You're in my thoughts.
Your cousin,
Joel

by:elizabeth d. March 11, 2008 at 12:00 AM CDT
She is absolutely beautiful! She looks so pink and healthy - I know the
CDH thing - but she has some FUNCTION there folks!
With thoughts, prayers and LUNG FUNCTION chants!

Elizabeth

She is adorable, and I think she looks like Kenny. I prayed so hard for
you both Sunday night, and I am glad things are going well thus far. I
look forward to the updates, and will continue to think about your family.
Love ya!!
Stacy (& Ben too)

by:erinrosfeld March 12, 2008 at 12:00 AM CDT
She is beautiful! I checked in for an update first thing this morning. We
are praying for you! Get plenty of rest, but I know you can't wait to join her
Jen. She looks so alert and awake, aren't those eyes the most beautiful
things you've ever seen?!
89. Re: Super Sofie!!!!

I am thrilled to hear that she is doing so well. You truly do have a little
fighter. I hope that the new medication will work.
Kenny you do get the award for typing all of that on you iphone. It must
have taken forever! Thanks for the update though.
Janet N

Sounds like your little Jayhawk is a strong one! Keep the good news
coming!
[You should win some sort of Supder Dad award for typing all of that on
your iPhone!]
66
~ Megan and Family

Wow, Kenny! That was an excellent update and wonderful news that
Sophia is progressing well. Obviously, many people have been praying
for all of you. You were very courageous to do this on your iPhone.
We look forward to more updates, but please take care of yourselves first.

RE: the pain meds: When Sabrina had her surgery, she was on massive
doses of pain meds for both sedation and pain relief, and they were able
to wean her quite successfully--first they augmented the fentanyl with
methadone and then dropped fentanyl levels until they weaned her off
that, and she went home on Methadone and weaned her off that in less
than a month following an established protocol. It went well, and she has
thrived since then. better to be "addicted" to the pain meds for a while
than to be uncomfortable, and babies cannot tell you when they hurt
except with their bodies.
Jean N. Sabrina's gma

Hey Kenny,
That was a pretty good update you did. I can't believe you did if from
your iphone. What other hidden talents do you have?? Sounds like Sofia
is doing pretty good. Cheryl gave me an update last night after she had
you guys settled into your room. I hope Jennifer got some much needed
rest, she needs to take care of herself, as the Drs will take care of Sofia.
So you are incharge of taking care of Jen and getting her to rest. I so
enjoyed the pictures Kris sent me. Grandma & Grandpa look pretty proud.
Even David said your daughter looks just like you. We are continuing to
say prayers for Sofia and look forward to seeing her in April on our way
thru KC. Take Care
Love Gail

by:ryanampkristimurdock March 12, 2008 at 12:00 AM CDT
Way to go Sofe! Kenny, that was a great update. It sounds like things are
going well around there. We'll keep praying for more miracles and further
improvement. And, like the Cottrell's said, you should get a super huge
67
award for doing all of that on your iPhone! Keep taking care of
yourselves! Love, Ryan & Kristi

by:theriddlefamily March 18, 2008 at 12:00 AM CDT
Jennifer and Kenny: Congratulations on such a beautiful girl! I am sorry I
am so late in posting, but you have been in my thoughts and prayers. I
love the picture of her smiling--what an amazing gift.
Ryane
96. Re: A Day of Highs and Lows

Sofia is a strong little girl and she will get better. I just know she will. We
continue to keep her in our thoughts and prayers. I'm sure today will be a
better day for her, I think she was just testing you guys. Letting you know
she is boss. Take care of yourself,Jennifer and the Drs will take care of
Sofia with a little help from up above. She has a few extra angels up there
watching over her. Love Gail

Sending lots of prayers for decreased PPHN and increased stability.
This is the rollercoaster that is CDH, hang on tight, you can do this!!!
Jenn Miller

I'm sorry that her numbers were off yesterday. I'll be praying that they
move back to the areas that are best for her and more assuring for both
of you. Prayer and love can go a long way.

by:Sharon L. March 13, 2008 at 12:00 AM CDT
Sofia & family continue in our prayers. Keeping hanging on as she needs
our world of love around her now more than ever. Miracles happen!!!!!
Sharon

Hello Jennifer and Kenny
68
We just found out about the birth of your sweet baby Sofia.
Congratulations!! We have you in our prayers. Hang in there! Wish we
were closer so we could help if needed.
Uncle Bob & Aunt Marvel

Sending this from my phone so i will keep it short. liviana had pphn issues
also and at her last appointment the doctor said he is not worried
anymore.email me if you want amyd.price@gmail.com. keeping you in my
thoughts all day.
102. Re: Prayers are Working!

by:Kristi L. March 13, 2008 at 12:00 AM CDT
Yea! Way to go Sofie! We're all praying for you! Hang in there, and take
care of yourselves, mommy and daddy. Love you all- Kristi & Ryan

by:Gina J. March 13, 2008 at 12:00 AM CDT
Keep thinking postively!! She is in our prayers and we are keeping track
of her progress.
Gina
Wyatt's Mom

Go Sofia!
We're continuing to pray for all of you. I'm so glad she's stable and things
are looking good. Make sure to take of yourselves too! You're in our
prayers! God is AWESOME!

Way to go Sofia!!! You are a fighter and will get through this. Hang in
there little one. Stay strong mom and dad.
Amy Rostberg

You can do it Sofia!!!!!

I'm still wearing turquoise and won't take it off till your surgery is done and
you are well on your way to a speedy recovery.
69
Love Gail

by:aimee March 13, 2008 at 12:00 AM CDT
Stay strong Sofia!! Praying for you! Love, Aunt Aimee

It's so great to hear the great update! We're thinking of you guys
constantly, and keeping Sofia in our prayers. She's definitely a fighter!

Glad to hear the awesome news! We have been praying so hard for
Sophia, and for you two Jen and Kenny! We will continue to, and look
forward to more great updates! Hang in there!
~Carrie and Matt Hoffman

Super Sofia! I can see the turquoise cape now!
Keeping you in our thoughts little girl!
Megan and Family

Jen and Kenny,
This is the first time I have had a chance to be on and see the pics of
Sophia. She is beautiful! Not that I'm surprised at that - she has good
genes! :)
My prayers for all three of you continue.
-Gina S-Z

by:AEP March 13, 2008 at 12:00 AM CDT
Hello!!
As a fellow CDH mommy, hang in there and take care of yourselves as
much a possible (I know easier said than done) but be healthy for when
Sofie needs you. Stay strong Sofia, we will be praying for you.
Hugs,
Ana and Marco Luis
You are welcome to check his carepage: marcoluis
I just did a blog- pena family
70
LCDH 3.2.07 Our happy and Healthy miracle!!

Jennifer and Kenny -
What an absolutely beautiful little girl Sophia is! We are thinking of you
and wish you the very best!
Nicolle, Mitch and Leyton Jones:)

Go, Sophia! That's wonderful news. I'll pray that all 3 of you remain
strong and stable.
115. Re: Day 1 of ECMO

by:erinrosfeld March 14, 2008 at 12:00 AM CDT
Jen & Kenny--
We will continue to pray for Sofia. God is good and will guide the steps of
you as parents, Sofia's path and the path of the doctors caring for her.
It must be difficult to be where you are, but try to stay strong. Take peace
in know that you have hundreds of people praying for you and your
family.
--Erin

by:Liz Rich March 15, 2008 at 12:00 AM CDT
We send you lots of prayers for your precious baby girl--she is beautiful.
Par sends a special hug.
Liz, Mom to Par (11/1/07 LCDH)

Jen & Kenny,

You guys have such a positive attitude. I'm glad you realize that ECMO
is something that, while scary, is life-saving. Jack took on a lot of fluid
when on ECMO and by day 3 his head got distorted because the fluid
settles to 1 side. I freaked out but other moms told me not to worry
because it goes away in a day or two once they're off. It's true! I will pray
that Sophia continues to fight hard but at the same times takes a bit of a
break to rest up and regain her strength.
71
Many prayers & lung function chants,
Vicki
mom to Jack, ECMO&LCDH, 8/20/07

Many prayers for you guys, I know this must be a very rough time! Your
beautiful baby Sofia will be just fine and running around getting into
everything before you know it!!

We're continuing to pray for all of you. I'm glad that there is a method for
you both and her little body to get some rest. She is so beautiful.

Way to go, Sofia!
Uncle Bob and Aunt Marvel

Jen & Kenny
As you know I'm in daily contact with Grandma Cheryl, so she filled me in
on the happenings with your precious little Sofia. She is in my thoughts
and prayers constantly.She is strong and will survive all of this better
than we will. She is just testing you and her grandparents, making sure
they are up to the challange of little Sofia. Take care and hopefully get
some rest.
Love Aunt Gail

stay strong sofia!
love aunt aimee
123. Re: Day 2 of ECMO - Morning Update

The jump to ECMO always causes our hearts to jump BUT sometimes it
is what these little ones need to recover. (I know you know this! Just
trying to reassure you!)
72
Sophia is beautiful - and has a fan club!

Elizabeth

Hey Jennifer,
I'm sure Sofia is the only little girl who will know the KU fight song
before she even begins to talk. Can't wait to see more pictures, a picture
of Sofia and her parents together would be nice.Grandparents to! HINT
HINT !!! You guys take care. Love Aunt Gail

Jennifer,
She is SO beautiful, and I will continue to follow her, and be touched by
her. Reagan Wittek

Our prayers are with you. CDH babies are the hardest fighters and she is
now able to relax and get strong. Wyatt was on ECMO for 13 days
before surgery at Johns Hopkins. It saved his life. Hang in there and
think postively.

That's right Sofia!! Rock Chalk!!!

You guys are certainly trying hard to make sure she won't want to jump
ship and become a Wildcat :)
We're happy she's getting some rest by being on the machine. Count this
as another plea for more pictures.

Congratulations on such a beautiful baby! I know how stressful the NICU

can be, but stay strong and take care of yourselves too. You will
definitely have your ups and downs, but keep the faith and you will get
through it. Sophia is definitely in good hands at Children's Mercy. Our
73
prayers continue to be with all of you daily! Sophia sounds like such a
fighter. Take care!~
LeAnn Church
130. Re: The 5 Day Plan

You're little girl is constantly in my thoughts & prayers. She's handling
the ECMO like a champ! I love the hand/foot prints!
Vicki
mom to Jack

Sounds like today has been a good day! Kenny looks like such a proud
dad holding her hand and foot prints! It was good to see you guys last
night, and hopefully all three of you will continue to get more rest as you
wait for the 5 day plan to run its course. She's the cutest!! Love you all-
Kristi & Ryan

What cute little footprints. I am still praying for you all!

by:finn March 16, 2008 at 12:00 AM CDT
Sofe girl, I'm pulling for you and I can't wait to meet you! My mom says
you're a pretty lucky little girl to have such amazing, strong parents...and
she says they are Jayhawks fans - always a plus!
(Cute hands and feet by the way...)Keep fighting!
Finn

Look at those adorable little feet and hands!!!
It sounds like you guys had a pretty good day today. We'll continue to
pray for you all. My church group meets regularly to pray for little Sophia
and your family. They'll be happy to hear good news tomorrow!
--Erin

74
So precious, and so girly with the bows. I'm glad her numbers are looking
good and that the combination of pain meds is keeping her comfortable.
That's wonderful that you got to see her open her eyes. She must be
wanting to know what's going on out there.
You're still in our prayers.

So nice to see your beautiful eyes yesterday Sofia!! Keep staying
strong!!! Love, Aunt Aimee

by:Ashley L. March 17, 2008 at 12:00 AM CDT
Sofia you are such a cutie. I'm glad she is doing well. I'm still thinking of
you guys.

I love the bows in her hair! She is such a pretty little girl.

She looks beautiful and so peaceful. When Wyatt was on ECMO, his
hips flared outward for 13 days (like a frog). Now he likes to lay like that
and I always have to put rolled up blankets beside his legs to push them
together. I wish I would of know while he was on ECMO of push his hips
together more... Sofia looks so comfortable, but I just wanted to share it
with you.

What a beautiful smile! So good to see Sofia close even though it is a
picture. Our prayers continue that the weaning process will be successful
and the surgery soon to follow will also be successful. Sofia is blessed to
have such a wonderful family to be her primary support just as you are
blessed to have such a beautiful daughter. Praying to see continued
improvement both in the blog and from Grandpa Steve & Grandma Linda.
Sharon
141. Re: Happy St. Patrick's Day!!

What a smile your little girl has, I'm sending all the prayers I can her way.
75
Love Gail

What a doll. She must know that she's all dressed up for St. Patrick's
Day. And such gorgeous eyes.

She looks like her mommy! :)
gina s-z

look at those gorgeous eyes and that lovely smile!!!

by:Ashley Jameson March 17, 2008 at 12:00 AM CDT
Love it. So, So pretty! She's gonna be a heartbreaker.
146. Re: THANK YOU!!!!!!!

Jennifer and Kenny,she is so beautiful. Our whole church is praying for
her each day. I got 6 calls at work today asking how she is doing. Love
Melanie
147. Re: Sofia's Big Week

Jenn and Kenny
What a precious little girl, I love the picture of her smiling. We are praying
for Sofie hard and my Sunday School Class is also praying. Sounds like
you have a real fighter. Keep it up Sofie
God Bless
Rachel B

It was so great to see you guys and the cute baby Sofia the other night.
We will be praying for Sofia over the next few days to get her thru this
next stage.
Amandrew
76
by:stacitalkington March 18, 2008 at 12:00 AM CDT
Jennifer and Kenny:
What a beautiful little girl Sofia is. She has such a pretty smile that I'm
sure just lights up your face. My thoughts and prayers are with you.
Keep the faith.
Staci

by:brookekaufman March 17, 2008 at 12:00 AM CDT
Just wanted to say your little girl is beautiful. I will keep her and your
family in my prayers.

We're praying for Super Sofie today as she starts her wean from ECMO!
You two keep taking care of yourselves.
Ryan & Kristi

Talk about a Super Sofie. She is doing so good. I just know weaning her
off the ecmo will go easy to. I just love her first smile picture. I sent it to
Grandpa Tucker so he could see her. I think he is quite smitten with his
newest great-granddaughter as we all are. Take care. Gail

Hope you guys had a good day. Keep fighting Sophie! I love your pretty
pink bow!
Vicki
mom to Jack

Love the bows! And keeping you all in my thoughts and prayers and
saying those imfamous LUNG FUNCTION chants for Super Sophie!
Hum - wonder what Jack thinks?
Peace,
Elizabeth
77
155. Re: Weaning Off ECMO Tonight!!
Let's see Super Sofia again, stay strong little one. One day at a time.
Love Gail

Hey you two
I am thinking and praying for you all. I have continued to follow you
through the pregnancy and now this journey postpartum. She is beautiful
and so blessed to have such phenomenal parents and support. Keep the
faith and let me know if there is anything I can do-no matter how big or
small.
Love Kristen Wootton

Keep trying Sofia! We are all here with you to help anyway we can. Mom
& Dad be strong too. Our prayers continue for all of you, especially Sofia
as she starts this next step of the healing process. Sharon & Don

My prayers and strength are with all of you these next few days. Its time
for Sofia to shine now, so let our prayers lead the way. Please let me
know if you need anything at all.
Janet
159. Re: A Long Night

YEAH!!!!!
i COULD NOT WAIT TO LOG ON AND SEE HOW SHE DID, I AM SO
HAPPY. GO GIRL! YOU GUYS HANG IN THERE, REAGAN WITTEK

Love the slide show Sofia you are so beautiful!! Stay strong little girl!
Aunt Aimee

Jen & Kenny,
I pray things are going better, Sofia is a fighter and you will all get thru
this. I loved the slideshow, it brought lots of smiles to my face and a few
78
tears. We are so lucky that Sofia has came into our lives, I have learned
alot from her about CDH and I'm sure she will continue to teach us. Hang
in there and give her a kiss for me. Love Gail

Those slide shows are amazing. You can see the love that she has been
given. She is lucky to have been born into such a caring family. Sophia
will have the most interesting first birthday pictures of all of her friends.
I hope that the process of turning down the ECMO went well last night.
163. Re: Doing Good

Way to go, Sophia! I am constantly amazed at your spunk and
determination.
164. Re: Doing Good

You have an amazing little girl! We are praying that Sofia transitions well
off of the ECMO and is able to have her repair surgery later this week.
She is so strong and determined. You are all in our thoughts and prayers
and we wish you the best.
Andy and Abby Wilhite
165. Re: Doing Good

We all know she is a really strong little girl! We're so happy that she's
been tolerating everything so well. Many more prayers today for all of
you! Keep on fighting Sophie- we're proud of you! Lung Function Chants
all around!
Ryan & Kristi
166. Re: Doing Good

by:janettem March 19, 2008 at 12:00 AM CDT
Dear Cousins--
Prayers are coming to you from the Pitt. I'm not surprised that Sofie is a
tough little gal. She has a lot of fiesty blood in her.
Go Sofie--You Rock!
Janette M
79
167. Re: Doing Good
by:Megan D. March 19, 2008 at 12:00 AM CDT
She is truly amazing. Good wishes are continually being sent your
way!..and your supporters are growing! I have my entire office on Sofia's
team now! Some of us plan to donate blood on March 31 in her honor.
Keep on fighting little Jayhawk!
~ Megan
168. Re: Doing Good

by:Kevin Cawley March 19, 2008 at 12:00 AM CDT
Dear Kenny and Jennifer,
My wife and I are friends of the Turleys and just wanted you to know that
we are praying for Sofia.
My wife is also a labor and delivery nurse, and my sister in law is a NICU
nurse.
We are praying that God will continue to make Sofia strong in the
transition off the ECMO, and that he will give the two of comfort and
endurance in the process.
Blessings,
Kevin & Katie Cawley
169. Re: Not Quite Ready

That's good that Sofie is getting the rest she needs. She's a girl, so she'll
decide when she's good and ready! :)
We're all thinking of you guys here at the office!

Sounds like your doctors are great. I am glad they aren't trying to do
things to quickly. Dad I don't know how you type all of this in your iphone.
Sofie has a strong will. She will let you know when she is ready. Until
then your family is in my thoughts
j

Hang in there guys. She'll let you know when she's ready. You're all in
80
my prayers!
Vicki
mom to Jack

by:amber March 20, 2008 at 12:00 AM CDT
A couple of months ago I was in your shoes with my son. I know it can be
very frustrating to having to wait until your child is strong enough for the
repair surgery. What I've learned is they will let you know when the right
time is. With my son he wasn't ready until he was two and a half weeks
old. Hang in there Super Sofia will let you know when she is ready. I will
be keeping Sofia and your family in my thoughts.

Girls always need to take our time to get ready. Sofia is a fighter but she
just needed to take a longer break. I am thinking of you guys contantly,
you are in my prayers.
Erin Elkin

Stay strong Super Sofie!!!
Love, Aunt Aimee

In a couple of years, she'll be sneaking off WITH dad to catch the
Jayhawks games. I keep imagining her in a little cheerleader outfit,
shaking her pom poms, with a big smile on her face.

We will be praying extra hard that Sofie gets the rest she needs so that
she's able to wean off ECMO soon. Thanks for all of the updates. She's
a doll!
LeAnn Church

Dear Jen & Kenny,

You have a beautiful daughter! She seems very strong and has a great
81
will to live..that's good! You both keep up the good work you're doing,
keep her spirits high and keep on praying...I'm praying for you both and
praying that God will deliver you blessings. I pray that he will open your
eyes, minds and hearts to know that he is in power. I pray that God will
direct the doctors and staff to use the knowledge they have in the
greatest effort to come to the aid of Sofia. I pray for her, health. Give it all
to God, your fears, your anxieties, your weaknesses. Pray for strength,
wisdom and for HIS will to be done. God Bless You. Diane

Thanks so much for the updates. It really is so great to know how Sofia is
doing. Our prayer requests continue for Sofia & for all her family. She is
so cute, a total little heart throb. Thoughts and wishes with our prayers
that the next move will be the last & she will be ready for the last steps for
her surgery and start the rest of the healing to a happy healthy little girl.
Don & Sharon

Hey Jen & Kenny,
Nice pictures you included, I wish Sofia didn't have to be moved around
so much, but maybe the next move will go better and the weaning off of
Ecmo will go better, then we can get this surgery over with. I'm counting
the days till I get to see her on April 2nd. She is such a cutie in the
picture, I'll bet she is even more beautiful in person, my prayers are with
all of you, take care. Love Gail
180. Re: Day 8 of ECMO - Not a Fan of Thursdays

I'm thinking of little Sofia every day. You guys are staying strong for your
little girl. You always seem to answer my questions with each blog post.
Just when I am wondering about her PPHN or blood pressure you post
about it. Us CDH parents have a sixth sense with each other :).You are
in my continued thoughts and prayers.
181. Re: Setbacks

Maybe the little Jayhawk just wants to make sure all is relaxed for the
game tomorrow. Can they have her on nitric while on ECMO? Did the
nitric help her pphn before?
182. Re: Setbacks

82
We are saying many prayers for Sophie and for mommy and daddy.
You're always in our thoughts! Love you- Kristi & Ryan
183. Re: Setbacks

We're praying that Miss Sophia will get some rest so all of her numbers
can get back to the places you want them, and that Sophia's mommy and
daddy can relax and get some rest, too.
184. Re: Setbacks

sofia, you can do it!!!! Get those numbers where they need to be so we
can get this surgery over with and everyone can rest. You are a very
special little girl and I know you can do what needs to be done. Kenny &
Jennifer you take care of one another and let the Drs take care of Sofia.
We are all praying for you and I know he will answer our prayers. See ya
on April 2nd. Love "great" Aunt Gail
185. Re: Setbacks

by:Melissa B. March 21, 2008 at 12:00 AM CDT
Many prayers for your beautiful baby girl!
186. Re: Setbacks

We've never met, but I'm a friend of Erin and Kerry's. Erin emailed me
about your family last week, and I wanted to let you know that I continue
to pray for you, and I've added your family to the prayer list at church,
SonRise in Pueblo West - so they'll all be praying for you too! Sophie is
so beautiful - such a strong little angel you have! Such a miracle she is;
God bless and take care of all of you.
Sara Peaslee
187. Re: Setbacks

Keeping you all in my thoughts and prayers. Sophie sounds like the lot of
them - push her she pushes right back. May this PH resolve soon.
And LUNG FUNCTON chants for Miss Sophie!

Elizabeth
188. Re: Setbacks

We are continuing to pray for little Sophia and your family. We are
praying for wisdom, comfort and healing!
83
189. Re: Setbacks
Hey Jen,
I can't bring up the video, how do I get it to come up. I can only see the
pictures. Gail
190. Re: Setbacks

What a beautiful video. She is so curious looking at everything and
everybody. Sofia definitely recognizes voices and looks for the person.
Our prayers continue for Sofia and her family for her to rest, be able to
wean off ECMO and make it through the corrective surgery. Hope to see
you all soon. Sharon & Don
191. Re: Setbacks

by:jenniferampkennymiller March 21, 2008 at 12:00 AM CDT
Amy,
They did say they may restart the nitric tomorrow if needed. It seemed to
help before and then when she went on ECMO they took her off the
oscillator and the nitric and put her on the conventional vent. They
wanted to hold off on the oscillator and nitric while she's on to give them
somewhere to go after she comes off. But as they said today, if we have
to use all the tools in the bag to get her stable first, we will. So they may
be doing nitric again tomorrow. We'll see, hopefully she'll behave without
it and leave herself a few options.
Jen
192. Re: Setbacks

Jen and family,
Praying that Sofia has a good weekend and is able to wean off the
ECMO. You have done an excellent job keeping everyone updated with
this blog.
Sofia and the family continue to be in my thoughts and prayers.
Kim Murry
193. Re: Setbacks

by:rosfeldfamily March 22, 2008 at 12:00 AM CDT
Jen--
We are continuing to pray for Sofia. I can't imagine how difficult it must be
for you and Kenny. You have such a precious little girl. We'll continue to
pray that she becomes stronger and that she will be able to tolerate the
84
surgery and will be on the road to recovery soon!
194. Re: Setbacks

by:Lizbeth F. March 21, 2008 at 12:00 AM CDT
Hi-I'm a fellow CDH mama. I think I got linked here from Liviana's site.
I've been following Sofia's progress and have been thinking about you all.
Best,
Libby Cohen
Mama to Makena, LCDH 9/30/06
www.caringbridge.org/visit/makena
(who had TWO surgeries on ECMO!)
195. Re: Sofie's First Movie

She is so BEAUTIFUL! I absolutely love that video. Thank you for
sharing that with us. Oh and Rock Chalk Jayhawk! It stinks being in the
city they are playing in and not being there. I look forward to more
updates.

by:kristiampryan March 22, 2008 at 12:00 AM CDT
Overachiever... who does she get that from???? Ha ha! You guys are
great. Thanks for the video, and lots of prayers for all of you. Love you-
Kristi & Ryan

What a little doll! She's adorable! She's so awake and alert...just taking it
all in. Glad that you two are getting to spend time with her while she's
awake. The video was great!!! Thanks for the update, looks like she is in
great hands. You two take care of yourselves, too! Prayin' for you all!!!

by:steveleemattampalex March 22, 2008 at 12:00 AM CDT
She is darling! We can't believe that she's so alert and looking around
the whole time. We're happy that her numbers are good. Keep it up,
Sophia. You're all in our prayers.

by:Michael B. March 22, 2008 at 12:00 AM CDT
She's so cute! Thanks for sharing such a great moment. . .
85
She just wanted to let mom and dad watch KU win their game tonight.
GO JAYHAWKS!
She is so sweet and I love the video. Thanks.
You are in my prayers.
Janet

Thanks for the sneak peak at her personality! Who does she get being
an overachiever from?
Keep up the good fight Sophie and Mom and Dad try to get some rest
when needed - take care of one another - it is hard.

Elizabeth

by:AEP March 23, 2008 at 12:00 AM CDT
She is adorable!!
Keep strong!
Ana and Marco
203. Re: Photos From Sofia's 1st Week

Love this slide and the song to go with it, brought tears to my face but
smiles too!! Stay strong Sofia! Love, Aimee

What a wonderful slideshow you have create. Counting the days till I get
to see this little Angel. Love Aunt Gail

It was good to see I made the cut :)... She looks so precious in all those
pics. Take care of yourselves.
Andrew

86
Thank you for the update. Please tell me I am not crazy....Did you have
her name as Sofie Rose before and now it is Sofia? Both are beautiful, I
just wanted to make sure I was not losing my mind (which is certainly
possible).

The video is absolutely adorable!She is clearly surrounded by family and
friends who love her. We will continue to pray for her health and strength!
You have such a precious baby!
She has a loyal following here in Colorado of people who are praying for
her and checking on her daily!
--Erin

by:jenniferampkennymiller March 23, 2008 at 12:00 AM CDT
No you're not losing your mind! LOL :-) Her full name is Sofia Rose, we
call her Sofie as a nickname.
Jen
209. Re: Happy Easter!

by:themom March 23, 2008 at 12:00 AM CDT
She is so beautiful. I can hardly wait to get my hands on her. I've tried
calling you, but you must be living at the hospital and I don't have your
cell phone. So I will just keep watching the blog. Prayers are pouring in
from this side.
Thanks for updating the blog.
(If this message comes up as "the Mom said", it because that's how I am
listed on Joel's blog. I don't know how to change it right now...not quite
the computer expert.)
Lori

Happy Easter Sofia!

by:erinelkin March 23, 2008 at 12:00 AM CDT
Happy Easter Sofia! I love your bunny booties, so cute! I can't wait to
87
come visit you. Keep on fighting, you are a tough baby girl.
Erin

What a cute easter greeting! She's the sweetest! Kristi

Happy Easter, Sophia! You have darling friends to keep you company.
Hope your day goes well tomorrow.
214. Re: Day 11 of ECMO - Weaning a Little More Today

Sweet dreams little Sofia. Get your rest. You've got a "big game" this
week! :)

Great job Sofie! So glad you are doing better. I know its hard but listen to
your doctor, Mommy & Daddy. You have a lot to do this week so you can
get better. Our prayers continue for you and Mommy & Daddy. Hope to
see your soon.
Don & Sharon

Sounds like Super Sofie is at it again. So happy to hear she is doing
better. Keep up the good work Sofie. We all like to see her with her eyes
open, but for now rest is more important. Soon you will be thinking, are
you ever going to sleep thru the night Sofie!!! Take Care
Love & prayers
Gail

Go Sofie Go!!! Glad to hear she is showing the docs her A-Game. I vote
her for the varsity ECMO weaning team! Kristi

Show them all girls are tough Sophie!
I have been thinking of you all - and love the picures and videos! Sophie
88
is a diva! ;-)

Elizabeth

Sofia, Jen & Kenny-
We think about you all the time. Thanks for all the pics & video.
With prayers,
Kathy & Pat Walsh
220. Re: Sofia Passed Her Clamp Test!

Woo Hoo! This is awesome news. Go Sofie go. That is great about her
pulmonary pressures. She just needed a rest. Continued thoughts and
prayers from us.

Praise the Lord! We will continue to pray for strength and health! I hope
you are able to get some rest tonight with such a big day ahead of you
tomorrow. We'll pray for peace of mind for you and that Sofie will continue
to "ace" her tests!
--Erin

by:Laura N. March 25, 2008 at 12:00 AM CDT
Hi Jennifer! This is Laura Dale (Sparks) I wanted to let you know that my
husband and I have been praying for you guys. Little Sophie is such a
sweet baby, and you two are such wonderful parents!! I can't wait to hear
more good news this week. Stay positive! Thanks for all the updates.

That is fantastic news! Sofie is such a fighter. We will pray that she
weans well off ECMO and that the repair surgery goes well. Take care of
yourselves too.
LeAnn

That's great news. We will continue to pray for the 3 of you plus you
89
medical team. Thanks for the updates.
225. Re: Day 12 (Last Day!) of ECMO

Sofie girl, you are always in my thoughts but I will send extra special mojo
your way this afternoon! In fact, I am going to send my co-workers a
Task Request at 3:00 pm so they can join me in sending postive thoughts
and well wishes!

by:davidampshellywillhoite March 25, 2008 at 12:00 AM CDT
You all continue to be in our thoughts and prayers. We will pray extra
hard for Sofia this today.

I will be praying for Sophie and your family all day today! I know surgery
day can be really scary, stressful and exciting. Hopefully this is what
Sophie will need so she can finally be on the road to recover and
hopefully soon you will be able to hold your sweet little girl.My son was
really sick before surgery too and once he was stable enough for his
repair. It was smooth sailing. I wish the best for Sophie.
Amber

Many extra special prayers for Super Sofie today!

Prayers and positive thoughts are coming your way Sofie. Remember you
are Super Sofie as your Daddy calls you and we are sure you will come
thru this with flying colors. Take care Jennifer & Kenny.
Love Gail

by:Stacey K. March 25, 2008 at 12:00 AM CDT
I am currently 25.5 weeks pregnant with a CDH baby. I have found your
blog to be very helpful in coping with this diagnosis. Even though I am a
complete stranger to you, I have kept your beautiful girl in my thoughts
and prayers, and I look forward to reading about her recovery.

90
Stay strong, little Sophie. We'll be praying for you and we're wearing our
turquoise today in your honor.
232. Re: So far so Good!!

Way to go Sofia!!! You are one step closer to going home with mom and
dad. Keep up the good work. You are a real fighter.
-Amy :)

Wooo-hooo! What an awesome update! Glad to hear that everything's
going go well....we'll continue to pray!

YAY Sofia!!! Keep up the good work sweetie!!

Praise the Lord! We will continue to pray for strength and that her surgery
will go well. You rock Sofie!
--Erin
236. Re: Sofie Continues to Rock

Keep it up Sofia!! Love, Aunt Aimee :)

Hang in there Sofia! Wonderful to hear you are doing better. Our prayers
continue for you, Mommy & Daddy and your continuing improvement.
Don & Sharon

I will continue to keep Sofia in my thoughts and prayers. I will also be
praying for her surgeon and neonatologist--that they be wise and skillful,
(cover all her bases) and that things go well for all of you on Wednesday.
91
Sabrina's gma.

Awesome! I have thinking about her and praying all day. Keep on
rocking, baby girl!

I am addicted to this blog, I am so happy for your good news. I am
praying all the time for Super Sofie!

Lots of lung function chants for Sofie! (and prayers too!)

That's girl Sofie! Keep up the good work.

Way to go Sofia! Hang in there--you're doing great. Applause &
Cheers!!!!!! Don & Sharon

You go girl!!!! Sofia you are doing great!!!!!!!!You are definitely living up to
that nickname of Super Sofie!!!
Love Gail

by:stephanieuzundede March 27, 2008 at 12:00 AM CDT
Oh Jen, I'm so glad the surgery went so well !! What a beautiful little girl!!!
Thank you so much also for this website. You are always amazing me,
and your awareness efforts are astounding! May God continue to bless
you and your family.
246. Re: Knock on wood

Super Sofie it is!!! Keep up the good work! Lots of prayers for a boring
day until it's time to get "fixed up." And more lung function chants. K&R

92
YAY! Boring is ALWAYS good in the NICU. I'll be thinking about y'all,
her and and her team today for the repair.
Go Sofie!!
L
Love,
another Jenn Miller CDH mom!

We always had faith in you sweet baby girl. You truly have shown us all
a miracle, and put all those statistics in their place. God is bigger than it
all, and we continue to pray for you all daily. Garrett can't wait to bring
Sofie her blue Cinderella bow : ) Love, Melissa, Markus, Garrett, Lily,
and Ty Calahan

Little Sofia is so strong! It's great to hear that things are going so well.
Tell her to keep it up! Sounds like this may be her big day!

Sophia, Please rest and be ready for surgery. You've been a real trooper
through this. We're excited that this may be the day you've been working
toward.

We are saying special prayers for Sofia today. Hope all can go as
planned with the surgery. David sends hellos and prayers from Israel.
252. Re: Surgery Not Happening Today

We are so sorry the surgery didn't happen yesterday. Hope things are
going better today. Our thoughts and prayers are with you three
everyday. Sofia is such a beautiful, sweet little girl!

I'm so sorry that you guys are on this crazy rollercoaster ride. We will pray
that she can go ahead and have her repair surgery tomorrow as
plannned.
93
Andrew

I am also sorry all of you are on this rollercoaster ride. Hang in there,
cousins.
Janette

Hang in there guys, Sofie's surgery will be done and over before we know
it and she will be well on her way to a wonderful life with mom & dad.
Love Gail

HEY JEN AND KENNY,
HOPE YOU ARE HOLDING UP. I AM KEEPING MY FINGERS

CROSSED AND FIND MYSELF THINKING ABOUT SOFIA ALL THE
TIME. SENDING MUCH LOVE YOUR WAY!!
KELLY HIGH

The church and our small group ministry are praying for you every day.
Keep the faith.
Melanie

So sorry about the delay. Stay strong & be there for Sofie. She has a
world she wants to explore yet. Thoughts & prayers are with you
continually.
Don & Sharon

I'm thinking of you three constantly. I have faith it is going to work out.
Stay strong. She'll feel your positive energy!!!
94
You are all in my thoughts. You can do it Millers! Strength and positive
energy headed your way!

Again, I will keep everybody in my thoughts and prayers. This is so hard
on all of you. Hang in there, there will be a light at the end of the tunnel--I
feel this strongly.
Sabrina's gma

Hey there, My name is Ellen and I work with Ashley here in Montgomery
Alabama. Ashley has shared your situation and I just wanted to let you
know that I will keep you and little Sofie in my prayers. God is Awesome
and its a miracle that you now have the medical knowledge to treat Sofia.
My God bless you, Ellen Knowles

We are pulling for you two and Sofia. We are as anxious as you are to
get her through that surgery. Thanks so much for the updates on the
blog. It helps us to be updated. I am always wondering how it is going for
all of you.
Prayers for Sofia are soaring to heaven from us.
Lori and Roger

by:Patricia C. March 26, 2008 at 12:00 AM CDT
Hi, Jen... I don't know if you were following my blog during Cadenne's
"beginning" in the hospital, but it seems like Sofia is doing almost exactly
what Cadenne did following her removal from ECMO. They kept trying to
get her off of the HF vent to do the surgery, but she just didn't "like" it.
Anyway, I just wanted to give you some encouragement from someone

who's been in your situation. These days are going to be up and down.
HUGS and prayers for little Sofia!

95
My bible study and church are keeping you all in our prayers. Remember
God is with you every step of the way. Always in my thoughts and
prayers.
Andrea

We will continue to pray for you. Praises that Sofie is still stable off
ECMO. We will pray that this remains the case through the night and they
are able to do her surgery tomorrow. We're praying for you three and that
your energy holds up! What a rollercoaster! We'll continue to send
prayers.
--Erin
267. Re: CDH Blood Drive Success!

Wow, Sofie must be really proud of Grandma Cheryl. Giving blood isn't
something she can do, but Sofie, she must be taking lessons from you
and being strong. Hope you had a good night and we can get this surgery
over with. I'm so anxious to get to see you on April 2nd. Remember you
are Super Sofie!!! Take care Kenny and Jennifer, my prayers are we all of
you. Love Gail
268. Re: Surgery Day!

You've made it to the big day! Please know that our extra prayers will be
going out starting at 1:00 for Sophia, her family, and her medical team.
You have done such a wonderful job of getting her to this point. I hope
you can find some degree of calmness during the surgery, knowing that
she has such a wide group praying for her.

by:julie w. March 27, 2008 at 12:00 AM CDT
Sorry it's taken me so long to post my comments, but please know that
Michelle, Gillian and I are praying exceptionally hard for Sofia. May God
also bless the hands of the surgeons and everyone in the OR....
I've been lurking on your page for quite some time, but needed to post
something since today is such a big day. All of our positive thoughts and
prayers are with you all.

96
by:Stacy H. March 27, 2008 at 12:00 AM CDT
lots of thoughts and prayers are coming from St. Louis today. Miss you
both!

Yeah! Will definitely send lots of prayers for Sofia! We will surely be
praying for you guys and the doctors too.

I will be thinking of sophia and you guys all day!

We will be sending many prayers for Sofie today. She knows it's her time
to shine! Come on Super Sofie- show 'em what you've got!

Oh, finally! I know you must be so nervous about the surgery, but also
anxious for her to get all fixed up. I'm so glad she is going into it stable,
and will definitely be sending up lots of prayers at 1:00.

The prayers are headed your way Sofie. I know you will do fine!! You are
"Super Sofie" !!!!! I'll say an extra prayer for mommy & daddy and the
Grandpa's & Grandma's as I know they are all on the edge of there seats
right now. We know there is no need to worry but thats what
parents/grandparents do. You are just testing them and I think they have
all past the test with flying colors. Take Care guys, Love Gail

by:tracypierron March 27, 2008 at 12:00 AM CDT
Continuing to pray for sweet, little Sofie every day. I will be thinking of all
of you at 1 today. Go Sofie!

I'm sure it feels good to know that this next hurdle will be behind you
soon. I'm praying hard for little Sofie for her surgery today and her
recovery during the next few days following. She's been such a fighter all
along, and she's going to be so strong today!
97
278. Re: Surgery Update #1
Many more prayers for Super Sofie, and for Mommy, Daddy, and the
grandparents. Love you all- Ryan & Kristi

You are in my thoughts and prayers GO SUPER SOFIE!!
Christal Crane

by:Caroline R. March 27, 2008 at 12:00 AM CDT
Thinking of and praying for Sofie constantly today. Stay strong, stay
positive!! Go Sofie!!
Carrie Pelzel

One of the hardest things to do is trying to be strong and brave as you
kiss your child and watch someone push her/him down the hall. Please
remember that you and Sophia have had excellent medical care and that
so many people are lifting all of you up in prayer right now.

by:erinelkin March 27, 2008 at 12:00 AM CDT
Sofia has already proven to be a tough baby girl and there are so many
people praying for her to give her an extra boost.

Stay strong mom and dad!!!! She is a fighter and showing her true colors
now. You guys have been very supportive for Sofia. Our prayers are
with you all.
The Rostberg family

I'm so happy Sofia is doing so well during surgery, hang in there!!!! Love
Gail

98
As we sit glued to the computer awaiting an update, please know our
hearts and prayers are with you!!
Love,
Jason and Kira

by:Stacy H. March 27, 2008 at 12:00 AM CDT
Between Ben and myself we are checking the blog at least once an hour,
thanks for the updates. So happy for Sofia! She is so strong, and she'll
hopefully breeze through the next 24 hours! Stacy

That is so great! I know you can't wait to see her.
That was smart to go ahead and take out her appendix. Claire's surgeon
told us her appendix is probably not on her right side like everyone else's
since they had to just stuff everything down. I hope she never gets
appendicitis because they might have a hard time finding it!

Good for Sofia. She is a tough little cookie! My thoughts and prayers
have been with you this last day, and I remember Sabrina's surgery, and
how anxious we all were. (They did an appy on her, too.) Keep the faith.
Hang in there.
Sabrina's gma

Go, Sophie! Stay 'Tuff'! Thanks for the updates, Cuz--I feel much closer
to you this way.
JM

Whoo-Hoo! Go Sofie go!
~Kira

99
Praise the Lord! We will continue to pray that the remainder of the
surgery goes well. Thanks for the updates! Go Sofie!
--Erin

Exactly what we all expected....hang in there.

Wow, very impressive updates! Great news!! We're all checking the blog
here and keeping you in our prayers - very strong intense ones coming
your way. Can you feel the warmth? Keep it up, Sofia!
Camilla

So glad to hear the wonderful updates. I so remember how I felt on
surgery day and my thoughts are with you today, I know how emotional
this day can be. I have a feeling she is going to just cruise after surgery
and be home with you in no time.
295. Re: Surgery Went Great!!

Sofie, you have brought so much hope for other CDH babies, you rest
and maybe the rest of the family can rest a little easier also. Looking
forward to seeing all of you on the 2nd. Love Gail

by:Michael B. March 27, 2008 at 12:00 AM CDT
That's fantastic news! Knew she could do it!

Go, Sophie, Go! You Rock! I hope all of you can get some well deserved
rest tonight.
Janette

Wooo hoooo!!! I'm so happy that Sofia is doing so well. Thank you for
the updates! We were all checking the blog nonstop!
100
Wonderful news. My husband and I have been following Sofia's progress
and are keeping all of you in our thoughts. Jennifer I don't know if you
remember me, but I went to school with you at ACCC and now I work
there with your dad. All of us at ACCC have been keeping your family in
our thoughts. Before you know it you will get to take Sofia home and
snuggle her in your arms.
Best wishes.
Melanie (Wallace) Smith

Super Sophie, from the alert look in your eyes to the fact that they had to
give you more sedation to keep you resting, it was obvious you are a
determined little girl. Rest well tonight - all of you.

Congratulations on a successful surgery! You continue to be in our
thoughts and prayers daily.

Super Sofie Indeed!!!! So great to know the surgery is done and she has
done so well. Thanks so much for the blog updates. Sofie is the last thing
we check before bed and the first thing in the morning. Prayers continue
asking to keep Sofia safe and help her heal quickly. Don & Sharon

by:brookekaufman March 27, 2008 at 12:00 AM CDT
I'm so glad to hear all the great news. We will keep you all in our prayers.
Go sofie!!

Sofia, Jennifer & Kenny,
You are in our thoughts daily. We are so glad to hear that the surgery
went well. We continue to keep you in our prayers. She is such a
beautiful baby :)
101
Tim & Sara Ellis

Oh - thank God that she is so strong. I am so glad surgery is over and
now she can truely start to heal! PLEASE try to get some sleep, you ALL
deserve it. Reagan Wittek

So glad to hear that the surgery went well, that's awesome news! Way to
go Sophie! Praying for you guys!

Glad to hear the surgery went well.
Continued prayers!

by:janellem March 27, 2008 at 12:00 AM CDT
Way to go Sofie! You have all been in our thoughts and prayers here at
RMTA today!
Janelle M.

I am so thankful everything went well today. I pray that she recovers
quickly and that you and Kenny will be able to hold and snuggle with her
soon.
Super Sofie indeed! Way to go we all knew that you could do it.
Janet

Jennifer and Kenny,

We just want to let you know
that you have been in our thoughts
a lot lately. We were so glad to
hear that Sofie made it through
the surgery as well as could be
expected. Your mom is keeping
102
us updated here in Iola. Take care
and we will be thinking of you.
Ron and Pam

I knew you could do it Sofia!!! You are one strong baby!...and your
parents...Some of the strongest I know.

That is the best news!! I've been on pins and needles all day, as I'm sure
you have been too. Glad things are going well. And we can't wait to see
her alert and breathing for herself. Hang in there guys, I think the worst is
over.
Amanda

Jen,
That is so great!! She is such a trooper!! Hope she rests well tonite and
hope you and Kenny do too!! Continued prayers from my family to
yours!!
love, Carrie Pelzel

What a beautiful day....much love, thoughts and well wishes.

Our God is an awesome God, He hears our prayers and He answers.
Church on the Rock Outreach Center (Emma's church) is standing with
you, the family, and Sofie in love and prayer.

Awesome! She truly is Super Sofie!

That is wonderful news! Those must have been the longest moments in
103
your entire life waiting to hear from the doctors. Please know that we will
continue to send prayers each and everyday for all 3 of you and
especially for little Sofie to continue to grow stronger and healthier every
day. I hope you get to hold your sweet baby girl in your arms very soon.

by:Jessica Singletary March 27, 2008 at 12:00 AM CDT
We are keeping Sofie in our prayers!
The Singletary Family

www.parkersingletary.com
319. Re: Surgery Details

Miller Family,
We just wanted to let you know that we are following your blog daily on
little Sofie!!! She's a doll. We will continue to keep Sofie in our prayers
as well as the new Mommy & Daddy!!!
Congratulations to both of you!!!!
The Ellis Family

by:Christine L. March 28, 2008 at 12:00 AM CDT
Wow... what an amazing little girl! She and you guys are definatly some
of my biggest heroes. Thank you for sharing so much and keeping us
updated. You all are in my prayers, heart and thoughts daily. Jen thank
you for your love and support when I really needed it.
Our energy, strength, love and healing prayers is always going your way!
Much Love,
Christine and Shaylin

Jen--
I didn't really understand all of the details when you first sent me your
blog, but now I have a much better understanding after reading the
surgery details you've written. Thank you for writing in 'layman' terms.
WOW! This kind of surgery is amazing. I think you have many angels
looking out for all of you, both on this side and on the other side.
104
Janette

Poor little lamb...but THAT owie is worth it! You are in my thoughts Miller
Family!

by:jeffersonkids March 28, 2008 at 12:00 AM CDT
poor sofia we all hope you get better soon.
This comment comes from students of your mom Mrs. Troxel!
- Morgan Wilson and Kyra Moore
324. Re: Still doing good

We knew you could do it, Sofie! Keep making your mommy and daddy
proud! We'll keep praying that you remain stable, and that mommy and
daddy get some rest. Lots of love- Kristi & Ryan

Glad to hear about how well Sofie is doing. Many prayers have been
answered and we will keep on praying for a fast and strong recovery.
Now Sofie can keep moving forward with the repair behind you guys. Get
some rest and take care of yourselves.
Rachel

Yeah Sofie!!!!!!!! You have one very strong and determined daughter.
Who does she take after!!!! Probably a little of both. See ya next
Wednesday!!!!
Love Gail

Such good news. I hope you can all relax today. You have all been very
strong. The prayers will keep coming.

Excellent news! You were the first thing I thought of this morning, darling
105
Sofie! Rest and heal sweet baby. You too Kenny and Jennifer!

Hooray for Sofie! I will keep praying that she continues to thrive and heal
quickly. I am so happy the surgery is behind all of you and went well.
Take care,
LeAnn

I am so glad to hear everything is going well! I have been thinking about
all of you and praying. She is a tough little buger! Lots of love and
prayers, Kenny's cousin Sara and family.

This is great news for all of you and "Super Sofie". I hope and pray she
continues to improve so you'll be able to hold her. Best wishes and
prayers in the coming weeks.
Staci

I am so glad that everything turned out well. She is such a little fighter. I
hope you all are able to rest a little easier now. May God let her heal
quickly so you may get to hold her. My continued prayer is with you.
Janet

Keep it up Miss Sophie - you are doing wonderfully - and Mom, Dad -
GET SOME REST! (I am talking to a wall there Sophie, aren't I?)

Elizabeth
334. Re: Rock Chalk Sofia!

Thanks for the update. I need my daily Sofia fix!

It sounds like she is doing great. Liviana had a collection of KU items as
well, much to the chagrin of the Nebraska nurses. Rock Chalk! Enjoy
106
your evening with your sweet girl and the Jayhawks.

So glad to hear that Sofie is doing so well!! She is a brave little girl, and
you are strong parents. Rock Chalk! Baby Jayhawk Sofie!! They'll have
Jayhawk power tonight w/ baby Sofie rooting for them!!! Rosemary St.

Sofie and you guys are the only ones I'd ever mutter these words for...
rock chalk! Keep up the good work, and we'll keep praying. Super Sofie,
we love you! Love, Ryan & Kristi

Way to go Sofia!! Your little Jayhawk knows that she needs to get better.
Glad to hear that she is doing great. Rock Chalk!

That is great news!! I'm glad to hear she is doing so well. She'll be
cheering on the Jayhawks with the rest of us tonight!!!

by:Robyn L. March 29, 2008 at 12:00 AM CDT
Yeah!! Things are looking good for both Sofie and the Jayhawks! She is
so strong. We are all at work catching up on our Sofie updates. We are
so happy for you all and will continue with the prayers. I can't wait for the
day you get to hold your sweet little girl, and I'm sure she can't wait too.
Looks like each minute you are getting closer. Love the pics - she is so
beautiful!
Love, Robyn Gallimore

sofia is such a rock star!! what great news!! rock chalk baby girl!!
carrie p.

While I can't bring myself to say Rock Chalk too loud (and I may not admit
that I said them later). :)We are praising the Lord that things are going
well and we will continue to pray for Sofie's recovery! Keep it up super
107
Sofie!
--Erin

Thanks for the update. Great to hear Sofia's is doing do good. Can't wait
to see her able to be awake and cuddling with Mommy, Daddy, Grandpa
& Grandma T, & Grandpa & Grandma M. Can't ask for a better picture
than Sofie & the KU Bear!!!!! Don & Sharon
343. Re: Sofia Continues To Amaze Us!

by:Laura N. March 29, 2008 at 12:00 AM CDT
Wonderful news!!
You put a smile on my face. :) I can't wait to see pictures of you holding
your sweet little girl. Praise God!!

Sofia you little wonder!!! You are trying to get home and be in mom and
dad's arms all night. You have lots of time to make up. Mom and dad
you are the luckiest parents you are truely blessed. You remain in our
prayers.
The Rostberg family

WOW! Again, I am just amazed at what the med profession can do to
correct problems like Sophia's. Totally amazing! I hope all of you are
getting good rest now.
Janette

by:craigandsandymintz March 29, 2008 at 12:00 AM CDT
Wow, I amazed at all little Sophie has gone through and how she
continues to be like you all have said "Super Sophie". I have learned so
much about a condition that I was not familiar with, thanks so much
Kenny and Jennifer for keeping us all educated and updated on your
beautiful and amazing daughter. Keep up the hard work Sophie, you can
do it.

108
Sofie truly is a miracle. She really is Super Sofie! With such super parents
too. More prayers and more lung function chants! Keep up the good work!
Love, Ryan & Kristi

Gorgeous xrays Sophie! I'm so thrilled with how brave you've been and
how strong too! That left lung is coming 'online' and there's no stopping
you now!

That is awesome! I am amazed at your little one. Your fabulous updates
keep putting smiles my face! Keep 'em coming!
I hope you get to hold your sweet baby soon!

G-ma Miller, Mom say's thanks for calling her this morning. That meant
alot to her. To the rest of you, including G-ma Miller, Way to go!! She's a
fighter! Will keep you all in our prayers and can't wait to meet baby
Sophie!! I tell Emmy about her everyday and show her her picture!! Love
you all and thinking and praying for you, Sara and Family.

We're glad that things are going well and that the lung is already
developing so well - amazing!

Praise the Lord! We are so glad Super Sofie is doing so well. We'll
continue to pray for good news! Wonderful!
--Erin

That is so great, and such good news for you guys! That x-ray is
amazing!

109
Truly a blessing. She continues to amaze us everyday. I believe He
heard our prayers!
May you all rest a little more comfortable. I am so excited for all of you.
Here's to hoping you get to hold her soon.
Janet and Dee

So beautiful to see that left lung expand. Looks wonderful. Keep on Super
Sofie!!! Don & Sharon

Nothing amazes me any more where Super Sofie is concerned, she is
such a Miracle. One very strong and determined little girl. Kenny and
Jennifer you amaze me, just as much as Sofie. The strength that the two
of you have must have spread into Sofie,with the 3 of you united, I truely
think nothing is impossible. Love Gail

Thats fantastic news! I have been thinking of little Sophia all week and I
am thrilled that she finally was able to have her repair surgery and how
much lung tissue she has is amazing! Hopefully from here the roller
coaster ride will began to slow down and your little girl will be in your
arms soon, were she belongs!

That looks amazing! She is a superstar. She wants to get home. I was
just getting ready to post x-rays on our blog from Liviana's experience
that I got on Friday. Her x-rays were not near as clear that soon but they
did not use chest tubes either so maybe that is why her fluid and
cloudiness lingered longer.
YEA Sofia! I am so excited for her and for you.
359. Re: Superstar!

I hope your little Superstar begins to get better soon. My thoughts and
prayers are with you guys. Stay strong.
Janet
360. Re: Superstar!

110
sofia is so amazing!! almost 3 weeks old already!! thanks for all the
updates!! i find myself checking the blog when i wake and before i go to
bed to make sure sweet sofia is doing good!! you are all three
superstars!! and of course go hawks...i am sure sofia will be cheering
them on again today!! take care,
carrie p.
361. Re: Superstar!

Sofie you and your mommy and daddy are always in our thoughts and
prayers. We'll continue to pray for your strength and wellness! Hugs-
Kristi and Ryan
362. Re: Superstar!

I'm sending all my thoughts and prayers your way Sofie, you are never far
from my mind. You are a Super Star to all of your family and extended
family. Love Gail
363. Re: Superstar!

by:Edward W. March 30, 2008 at 12:00 AM CDT
I am a distant relative to Stacy Weston and heard from her mother about
you guys. I have you and your little Sofia in my prayers. Continue to stay
strong and know many people are praying for you. I can perhaps connect
with you on a level many cannot. My 3 month old son has cranial
synostosis. The suture in his head has fused prematurely, and has to be
removed to allow his brain to grow properly. So if you ever need to talk to
someone about the hospital blues, please don't hesitate to contact me or
my wife. You can visit Owen at www.caringbridge.com/visit/owen Feel
free to email me anytime. chrissmalley [at] gmail.com
364. Re: Superstar!

You rock like the jayhawks sofia!!
365. Re: Sweet Little Feet

We are glad that Sofia's doing so well. We have been praying for her and
your family. She's such a cute little girl can't wait to meet her in person.
The Families of Hazel and John Robb.
366. Re: Turning The Corner

It's so good to hear that her numbers are going it the right direction. We'll
111
be praying that they continue in that direction. I hope you both are
breathing a little easier, too. And congratulations on the win last night!
367. Re: Turning The Corner

Go Sofie, Go! She definitely has some of that overachiever in her! Keep
up the good work. We'll keep praying for continued progress, and
stability. CDH awareness day- here we come! Love, Ryan & Kristi
368. Re: Might Be Switching To Conventional Vent Today!

Keep up the good work Sofie, it would be so nice for your mommy and
daddy to get to hold you this week. Lots of prayers are heading your way,
even from some ladies that I met at the Mall today. They got a lesson on
CDH today. See ya soon,
Love Gail

That is so amazing. I'm really excited that they are already thinking of
taking her off of the machines. Give that girl a big hug from all of us. I'm
will keep her in my thoughts. As for CDH Awareness day, it was a
success at The Cone Company. Everyone participated in some way. I
took a picture and will email it to you soon. Take care. Love, Ash

That is great news!! Keep up the great work Sofia!!

That is such awesome news! What a fighter!! Yeah Sofie! Prayers that
you get to hold your little miracle baby this week!!

Most excellent! I cannot wait to see the slide show of you guys holding
her!
Our mini "CREW for Sofia" blood drive here in Lawrence was a success
today! Donated 5 units and we all wore turquoise!
Go Sofia!
373. Re: Celebrating CDH Awareness Day On The

Conventional Vent!
112
That's so great! I hope you get to hold her soon. Happy CDH Awareness
Day!

Conventional Vent!
she is such a superstar!! i hope she will be in her mommy and daddy's
arms soon. you all deserve that so much!! cameron and i are wearing
our turquoise today and spreading the CDH word!!
carrie p.

Conventional Vent!
Yay Sofie! Congratulations, and way to go!

Conventional Vent!
Go Sofie Go!!!!

Conventional Vent!
Sofia you are such a little fighter. Mom and dad she wants to come
home. What a blessing you have.
The Rostberg family
113
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Sofia's CDH Story, Volume I Jan-Mar 2008

Jennifer Miller December 6, 2008

This is your story; a story of hope, faith, and miracles. Know

Monday, January 21, 2008

Here is the rundown of what's been go-

10.29.07 - This morning we had our ultra-

Delivering at OP brings us to another change in plans. Our OB Dr. doesn't do deliveries

11.14.07 - Full amniocentesis results came back all normal!!

Monday, February 11, 2008

Tuesday, February 12, 2008

Monday, February 18, 2008

Sunday, February 24, 2008

Monday, February 25, 2008

Saturday, March 01, 2008

Breath of Hope, Inc. is a non-profit organization founded in 2004 by Elizabeth Doyle-

So to commemorate the first annual CDH

Sunday, March 02, 2008

Monday, March 03, 2008

Wednesday, March 05, 2008

Posted by Kenny and Jennifer Miller at 09:04PM (-06:00)

Sunday, March 09, 2008

Monday, March 10, 2008

Photo and video editing at www.OneTrueMedia.com

Wednesday, March 12, 2008

Sent from my iPhone

Posted by Kenny and Jennifer Miller at 08:28AM (-05:00)

Thursday, March 13, 2008

Friday, March 14, 2008

Sorry for the delay in updates! We had a

Posted by Kenny and Jennifer Miller at 11:02PM (-05:00)

Saturday, March 15, 2008

Sunday, March 16, 2008

Sofia is still doing well on ECMO. She was stable

Mommy putting my first bow in

Littlest KU fan - Go Hawks!!!

Here's a quick picture from today. I'm

Monday, March 17, 2008

Sofia's First Smile

Continue to keep us in you prayers and Thank You.

Tuesday, March 18, 2008

Make an on-line slideshow at www.OneTrueMedia.com

Wednesday, March 19, 2008

Posted by Kenny and Jennifer Miller at 09:23AM (-05:00)

So while we are disappointed it is better to give her some more time

We will make it next time.

Posted by Kenny and Jennifer Miller at 02:23PM (-05:00)

Thursday, March 20, 2008

Sofia's new (old) room

Mommy gets to change Sofia's diaper for the first

Daddy gets to put on Sofia's lipgloss

Posted by Kenny and Jennifer Miller at

Saturday, March 22, 2008

Photo and video editing at www.OneTrueMedia.com

Sunday, March 23, 2008

Make a free ecard - it's easy!

Photo and video editing at www.OneTrueMedia.com

Make a free ecard - it's easy!

CDH Awareness Blood Drive Monday 3.24!!!

View Larger Map

34 Monday, March 24, 2008

Sofia did really well over night weaning

Posted by Kenny and Jennifer Miller at 09:52AM (-05:00)

Sofia's Mommy & Daddy

Tuesday, March 25, 2008

Sofia's CDH Story Volume I Jan-Mar 2008

Sofia's CDH Story Volume I Jan-Mar 2008