I can't believe we are so close to meeting our beautiful, baby girl! We are still setting up her room - hopefully her dresser and glider will be here soon so we can really figure out where we will put everything. On Sunday, we have our baby shower and on Monday we are doing our maternity photoshoot! Last minute, I know :) Then on Tuesday we will wake up at about 2:30am, leave for the hospital at 3:30am to be there at 4am. The C-section should be at about 8am! I am in disbelief that we are so close, and I feel at peace :)
We don't know what the future holds, but we are ready to begin this journey with you Emily Quinn!
Friday, March 20, 2015
Friday, March 13, 2015
Cord Blood Transfusion
In all the hours of research I have done since finding out
about Emily’s diagnosis, the best thing I’ve found is a cord blood transfusion study
currently being done at Duke by Dr. Kurtzburg.
I found out about the study through blogs of other families going
through what we are going through. There
have been families that have traveled from all over to Duke to get this
procedure done. Basically, the procedure
involves using the child’s own cord blood that was collected at birth to re-infuse
back into their body. The study
determines whether this is beneficial in regenerating brain tissue growth
and/or repairing the damage that the pressure of the fluid caused on the brain
while in utero. Since there are no
studies like this published, there isn’t a way to say “yes this definitely helps
make a difference.” Also, since the
prognosis isn’t directly correlated with how severe the hydrocephalus is, there’s
no sure way to determine if the stem cells from the cord blood are the sole
reason for a better outcome. However,
the results have been promising and parents have raved about it and sworn that it made a huge difference for their
child. Stem cells are pretty amazing little things. They can form into any type of cell, and replace damaged cells wherever they may be needed in the body. Bryan and I are firm believers that this could help our
daughter.
Our team of doctors and the team responsible for the study
are on board, so Emily’s cord blood will be collected during her delivery,
stored at Duke and she will have her first cord blood transfusion while she is
still in the NICU, after she recovers from the shunt surgery, probably about
4-5 days afterwards. Then, depending on
her particular situation, she might have more transfusions a few months later. It will be determined after she is born, but
we are guessing anywhere from 3-6 transfusions.
The only problem is the cost. Our
best case scenario, oddly enough, is that our insurance denies it (which will
probably happen since it is considered experimental), then Duke offers a
discount through the study which makes the entire procedure about $4,000 (it is
normally $11,000). Regardless of the
cost, we want to give Emily the best chance at life that we can. It feels good to finally have something we can do to help Emily, instead of the "wait-and-see."
Here are some links that have more information about cord blood and hydrocephalus in general:
http://www.today.com/id/21134540/vp/23569985#23569985
http://www.foxnews.com/health/2014/01/13/did-cord-blood-banking-save-this-baby-from-brain-damage/
http://www.charlottemagazine.com/Charlotte-Magazine/July-2013/Beating-the-Odds/ - The 2nd story is about congenital hydrocephalus.
Neonatology Consult
On March 3rd (34 weeks), we had a consult with
our family coordinator and a neonatologist.
We discussed more about what to expect with Emily’s birth, surgery and
recovery. Earlier that week, a team of
doctors discussed our case and made a plan of action regarding what needed to
be done specific to our baby. It was
decided that it would be best to deliver at 37 weeks, due to the size of Emily’s
head. This was balanced with the need to
wait until full-term when her lungs would be mature enough and she would be
strong enough to handle surgery.
Our
beautiful Emily Quinn will be born on March 24th!!
We were in shock that it was only 3 weeks
away and her birthday would be in March, and so excited and anxious to meet
her! As of right now, that is only 11
days away! The neurosurgeon we met with
is scheduled in the OR beginning that week so she will be the one doing our
baby’s surgery either that same night or the next day (March 25th). We were told ahead of time that a classical
(or vertical) cut is probable since Emily is breech and her head is bigger than
40 weeks. This is disappointing for me
because that means I won’t ever be able to attempt a vaginal birth and
subsequent pregnancies will have to be delivered at 37 weeks for risk of
tearing the old incision. They will try
to do the lateral (or horizontal) cut if they can, so here’s to hoping that
will be the case and I can attempt to avoid a C-section next time!
During the C-section, there will be a team of
neonatologists, respiratory therapists and a team for collecting her cord
blood, as well as doctors, nurses, assistants and Bryan, of course! A lot of people there to meet our baby girl
for the first time!
As Emily grows, neonatologists will assess her development
and determine if she needs occupational therapy , speech/oral therapy or
physical therapy. We want to do
everything we can to ensure that Emily reaches her full potential. It’s humbling how we started this pregnancy
with specific desires and wishes for our baby and now our perspective is
changed forever. I would give anything
for my daughter to lead a life full of happiness, love, laughter and the
ability to think for herself. More than
anything, I want her to be a part of the beauty of life and be able to enjoy
it. Our sweet girl will struggle more
than we ever thought, which breaks my heart because I tried my best to create a
life for her that was easier and healthier than mine. I’ve dreamed about her for as long as I can
remember, and while she will be different than what I’ve imagined, she will be a
beautiful miracle. I hope her pain never
lasts long and her struggles never hold her back.
“And though she be but little, she is fierce.” – Shakespeare
Neurosurgery Consult
On January 21st, when I was 28 weeks along, we
met with our Family Coordinator, who helps us communicate with everyone we need
to for Emily’s care and supports us with any questions and concerns we have,
and the neurosurgeon who will be performing the VP shunt surgery. My mother-in-law, Lois, flew down to go to
the consult with us. We brought a huge
list of questions with us and they could not have been more patient and
understanding with answering each and every question. We learned more about how the surgery and
shunt work, what the shunt looks like, when the surgery will take place, how
her stay in the NICU will be to recover.
This shunt will save her life but it has its problems. Shunts malfunction and can get infected, and
Emily will outgrow it eventually. When this
will happen is unknown, but our neurosurgeon says it will happen. So Emily will have multiple shunt revisions
over the course of her life. Infections
usually occur in the first 1-3 months and malfunctions can happen anytime. We will have to learn the signs of shunt
failure and infection so we can intervene quickly.
An MRI will be taken after Emily is born to get a baseline
of her ventricles, then another will be taken after the surgery to make sure
the shunt is inserted and working correctly.
Emily will then have follow-up MRIs to monitor how well the fluid is draining
and how her brain “bounces” back.
We also toured the birthing center, where I will have the
C-section, and the NICU. It was a relief
to know what to expect and get to see these places beforehand.
I feel so lucky to have our baby at Duke Hospital where she
will be well taken care of, and blessed to have our Family Coordinator and
Neurosurgeon who are both so compassionate, sweet and supportive. I feel confident that Emily will be in good
hands with the Neurosurgeon we have.
A while back, I saw a picture of a baby wearing a onesie
that said “Shunt Happens!” We might have to make this our motto!
The Beginning of Emily's Story
On August 3rd 2014, my husband, Bryan, and I found out that
I was pregnant! We were over-the-moon excited and couldn’t wait to share our
great news with the whole world! This
pregnancy was your typical one – everything looked perfect. We got to see our little one’s heartbeat
flicker on an ultrasound on August 21st and heard it for the first
time on September 18th. It was the most beautiful sound I’ve ever
heard and wanted to keep listening to it forever! On September 30th,
we went for our 1st trimester screening, not concerned at all, just
taking advantage of seeing our baby on an ultrasound again. During the ultrasound, we got to see our tiny
baby jumping around (looking happy, if a baby can look happy in the womb) and
got a perfect view of everything, even though she was moving around so
much. As we were waiting for the doctors
and marveling over how perfect she looked in the ultrasound picture we got, we
couldn’t be happier.
Then, when the
doctors came in to talk to us, our whole world crumbled. I’ll never forget that dreadful, sinking
feeling of being in shock that our perfect baby could have something wrong with
her. They said her nuchal fold was too
big, she had fluid around her heart and lungs, and they were sure she had
hypoplastic left heart syndrome, which basically means the left side of her
heart is not developing. They offered
the possibility of termination and explained the laws in North Carolina and
nearby states in regard to limits on gestational age. They told us she would need at least 3 heart
surgeries and she still wouldn’t live very long. It was heartbreaking. We were not interested in terminating this
pregnancy and felt that our baby has lived his long, and will live as long as
she’s meant to. We had a CVS test done
that day to find out if she had anything genetic, such as Down Syndrome, Turner’s
Syndrome, etc. We also went over to the Children’s Hospital to see a Pediatric
Cardiologist to have an ECHO of her heart.
The doctor said that while the valves and structures of her heart were a
little on the small side, they still fell into the “normal” category for being
only 12 weeks gestation. He said he wasn’t
worried about hypoplastic left heart syndrome but there was fluid around the
heart that he wanted to monitor. So
within those 6 hours, we had quite a roller coaster of emotions. It was one of the hardest days we’ve had. We just didn’t know what to think or how to
cope.
A week later, we got the results
of the genetic testing and everything came back NORMAL! We also found out that we were having a
GIRL!! I always imagined we would find
out by looking at the ultrasound, not over the phone while finding out that her
chromosomes are normal but I couldn’t help myself. With that information right there, I just HAD
to know! I told Bryan over the phone at work, while keeping it a secret from
everyone else!
We made a plan to have ultrasounds every 4 weeks to monitor
her heart and see if there were any other issues. On October 28th, at 16 weeks, we
had another ECHO, which showed the same thing – the valves and structures were
a little small but all present, proportional and in the right places. Blood was flowing where it was supposed
to. There was still fluid around the
heart. The fluid around her lungs wasn’t
there anymore.
However, there was some extra cerebrospinal fluid in her
lateral ventricles in her brain and she was diagnosed with
ventriculomegaly. This was now our
biggest concern. Normal lateral ventricles
should measure 5-6mm and Emily’s ventricles measured 10.3mm and 10.4mm. Any
measurement from 10mm-15mm is mild to moderate and anything over 15mm is
severe. On November 13th, at
18 weeks, the ventricles increased to 16mm each, making Emily’s
ventriculomegaly severe. On December 12th,
at 22 weeks, her ventricles measured 19.5mm each and it was clear that they
would probably keep increasing but it was impossible to predict how much. Everyone
has cerebrospinal fluid in their brain that flows through and around the brain,
cushioning it from movement and falls to protect itself. The fluid is reabsorbed into the brain and
flows through aquaducts in the back of the skull, down the spine, where it is
also reabsorbed. The brain continually
produces cerebrospinal fluid, so if the aquaducts are blocked or if the fluid
cannot be reabsorbed, it accumulates. Sometimes,
the brain produces too much cerebrospinal fluid at a faster rate than the brain
can absorb, causing it to accumulate. In Emily’s case, we don’t know what the
cause is and we might never know. That
is the case for a lot of babies with this condition. Her diagnosis has progressed into
hydrocephalus. The terms
ventriculomegaly and hydrocephalus are sometimes used interchangeably, but the
way it was explained to us is that ventriculomegaly is a dilation of the
ventricles with fluid, while hydrocephalus is more severe and the fluid
compresses the brain structures. Due to
the extra fluid, Emily’s brain is being compressed to the sides of her skull,
which can impact her brain development. Since the skull plates are not yet
fused in young babies, the head size usually increases with hydrocephalus as
nature’s way of relieving some of the pressure off the brain. This is called macrocephaly. As hard as that is to accept, it’s actually a
good thing because it can help prevent some brain damage. At 22 weeks, Emily’s head was measuring 25
weeks gestation. At this time, we met
with a neonatologist, who explained that Emily would need surgery to place a VP
shunt, which is a small, plastic catheter that is inserted into her lateral
ventricle, to drain the fluid down a small, flexible tube that goes into her
abdomen, where the fluid can be absorbed.
This surgery will happen the same day or the next day after she is
born. The hope is that after the fluid
is drained, her brain will “fluff” back out and be able to develop like it
should. We’ve been told that babies’
brains are resilient so let’s hope so! It
is hard to predict what her neurological outcome will be. Our pediatric neurosurgeon told us that some
babies with large measurements and not-so-good MRI’s do well neurologically and
some babies with less severe measurements and good MRI’s don’t do as well. Some brains can take a lot of pressure before
irreversible damage occurs and some can’t.
Therefore, there is not exactly a direct correlation or prediction that
can be made of how impacted her development will be. Usually if this diagnosis comes along with
other abnormalities, such as heart defects or chromosomal abnormalities, the
prognosis is poor. Since Emily’s other
issues have resolved themselves and the genetic tests all came back normal, her
diagnosis is considered Isolated Hydrocephalus, which is good. However, her hydrocephalus is severe so that’s
not good.
Overall, we really have no
idea what the future holds for our little Emily Quinn. During this pregnancy, we have been thrilled,
devastated, sad, scared, in love and hopeful.
Now all we can do is hope for the best and monitor her ventricle size
as she grows. To make it easier to see
the progression, here is a list of her measurements over time:
16 weeks – 10.3mm and 10.4mm
18 weeks – 16mm each
22weeks – 19.5mm each; Head circumference: 23 cm = 25 weeks
26 weeks – 33mm each; Head circumference: 30 cm = 33 weeks
30 weeks – 37 mm and 42 mm; Head circumference: 35cm = 40
weeks
34 weeks – 49 mm and 53 mm; Head circumference: 43 cm = well over 40 weeks
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