(A Chronicle Told Via E-Mails)
For nearly nine years, I have been saving the e-mails we sent our loved ones when we found out our unborn-at-the-time daughter had spina bifida. I have been meaning to do something with them, in order to preserve the story and memories better. This blog, seems a better place for them than the "dusty" virtual file folder in which they've languished all this time. I have already posted the first e-mail, "The Beginning of Our Spina Bifida Story." The remaining e-mails, which take us through Butterfly's birth, I plan to post in two parts. Below you will find the e-mails leading up to our decision to pursue "fetal surgery for spina bifida" for Butterfly, as well as the immediate outcome of that surgery.
October 31, 2002
Hello dear friends and family,
We can't thank you enough for your kind e-mails, cards
and phone calls. They have encouraged us more than you
will ever know! And to everyone, thank you, thank you
for your prayers, they are sustaining us! God remains
and will always be faithful.
We are excited to share with you our baby girl's name:
H...... Smith. We are in love with her already and
are pleased to be able to talk to her and pray for her
by name.
As we noted in our previous e-mail, we will be leaving
for Vanderbilt Medical Center in Nashville November 7
and begin meeting with the medical team November 8.
November 8 will probably play a BIG role in our
decision-making since we will have the best idea yet
of Hannah's lesion level and what benefit the surgery
would potentially have. We would covet your prayers
this day. If we feel God leading us to have the
surgery, it will take place Wednesday, November 13. We
will e-mail you before this date and ask for your
prayers if this is to happen. Today, our health
insurance denied our initial request to pay for the
surgery, so tomorrow our request will be presented by
the lead doctor at Vanderbilt to a doctor on staff at
the insurance company. Again, we ask for your prayers.
Remember also to pray for my mom, B's mom and my
Aunt Ruby who will be taking care of the kids while
we're away. We have been so blessed by their devotion
to our children!
E and L had a fantastic time trick or treating
today as a train engineer and Madeline. They are
surely on a sugar high as we type this. ;)
Have a fabulous weekend and we love you all!
B and Amy
Sent: Friday, November 08, 2002 3:49 PM
Subject: Friday at Vanderbilt
Dear friends and family,
Well, we didn't receive the news for which we hoped.
Our neurosurgeon in Pittsburgh said that the defect
level could be at L4, rather than L2. Today, the
doctors at Vanderbilt concurred with the first
suggestion that the defect is at L2. Prognosis for L2
defects just aren't as good as those for L4.
We also had an MRI which will tell us more about
H's brain position. The ultrasound was very
positive in one aspect: she isn't showing any signs of
hydrocephalus (fluid on the brain) today. It would be
very unusual for a child with an L2 lesion to not require
shunting for hydrocephalus... so we are praying for a
miracle here!
The surgery we are investigating isn't proven to help
as much for walking and bladder control given her
defect level. We are still hopeful that the surgery
might offer benefits for H's brain development.
We will find out more Tuesday from the neurosurgeon as
to the extent of any benefits and how they measure
against the risks involved.
We haven't yet felt God's leading on what our decision
should be. We continue to pray and would ask that you
would as well... for clear direction from God on
whether or not to have the surgery and for a miracle
on H's behalf. We know that God loves little
H even more than we, and He has only the best in
store for her. In that, we have great comfort.
Thank you for everything,
Amy and B Smith
November 13, 2002, 12:25 a.m.
Hello friends and family!
After much prayer and consideration, the only place we
can find peace is to choose the surgery. So, Lord
willing, Amy and H will be having surgery at 1
p.m. central (2 p.m. eastern) Wednesday. The doctors
will cut a small incision just as for a c-section in
Amy's abdomen and another in the uterus. They will
drain the amniotic fluid, tilt H's back-side out
and do a very simple stitching up of her lesion,
reinsert the amniotic fluid, close the uterus and
Amy's abdomen. It should take about 90 minutes. Please
pray that God's hands will guide those of the doctors,
that He will keep H and Amy in His tender care
both during surgery and recovery. Lord willing, we
will be discharged from the hospital Saturday and
return to Pittsburgh Monday.
Every way we've looked at this decision, there are
serious risks, primarily prematurity if we choose
surgery (9 percent deliver before 30 weeks as opposed
to 3 percent in the "normal" population). However, the
surgery, almost without exception corrects to normal
or almost normal the hindbrain herniation that exists
with spina bifida and which H already has. Seven
percent of children die of complications due to this
herniation. For the twenty to thirty percent who live with
spina bifida-caused hindbrian herniation (Chiari Malformation II)
complications, treatments may include tracheotomies, feeding
tubes and the like to control gagging- and breathing-related
problems. Either choice we make, H's life could
be in jeopardy. And the numbers aren't very different.
What we hope she will gain, with God's working through
the surgery, is reversal of the hindbrain herniation,
avoidance of having a shunt and protection of her
exposed nerves from further damage; they would
otherwise suffer from the continued exposure to the
increasingly toxic third-trimester amniotic fluid.
This may be more than you wanted to know, but we felt
it important for you to understand all that went into
our decision. Truthfully, we are not trusting the
doctors to make a miracle. We know that our God is the
one who will be the master of our miracles. Please
pray that He will be pleased to bless H with many
miracles in both her physical and spiritual life.
Thank for your continued prayers for us. We will try
to update you after surgery. "The peace of God which
transcends all understanding, will guard your minds
and hearts in Christ Jesus." Philippians 4:7
Love, B and Amy
P.S. For those of you who understand the significance
of lesion level, the neurosurgeon we saw today thought
H's lesion level is an L3 instead of an L2.
Sent: Wednesday, November 13, 2002, 9:27 PM
Subject: Surgery Goes Well !!
Sorry everyone, I have been remiss in sharing the good
news with you: the surgery went well. Amy is feeling
fine. She has been rather sleepy, but has perked up
the couple of hours.
The neurosurgeon came to speak with me briefly after
his work with H was complete. He said that all
went well. H was missing some tissue, but he was
able to use some material used for skin grafts to
help. This is not uncommon and nothing to worry about.
Amy came back to the room with much fanfare and many
doctors in tow. A surgeon was visiting from Barcelona,
Spain and stated that it was "amazing." We prayed with
most of the doctors before the surgery and were happy
to see them come back.
Amy is on an IV, epidural, and oxygen. Most of the
drugs are designed to keep the uterus from
contracting, as the big red bag was very irritated to
be worked on before its time. :)
We are very excited at one unexpected benefit. A young
lady (7) in Nashville came to trust in Jesus as her
Savior yesterday. Her mother, a new friend, was
praying with her for the Lord's favor on our surgery.
After a year of discussion about salvation, her mom
said her interest in salvation seemed bolstered by the
conversation about our surgery. Glory to God!
Love to all,
B (for Amy) Smith
P.S. Uncle Mike read this verse before the surgery:
"In the same way, the Spirit helps us in our weakness.
We do not know what we ought to pray for, but the
Spirit himself intercedes fro us with groans that
words cannot express. And He who searches our hearts
knows the mind of the Spirit, because the Spirit
intercedes for the saints in accordance with God's
will." Romans 8:26, 27.
Sent: Friday, November 15, 2002 10:21 PM
Subject: Friday at the hospital
We both got more sleep last night. Amy felt much
better this morning. She is able to walk short
distances (inside the room) and doesn't feel much
pain. Amy was put on a regular diet.
Contractions are our main focus now, which require
medication to suppress. She has a pager-sized pump
that controls dosage to a catheter in her leg. The
spot on her leg must change every five days. There is
also a monitor (for contractions) which stores data to
be transferred via phone line to the home health care
provider. Pretty high tech.
About the time we were being instructed on the
intricacies of the contraction monitor, Amy became
sick. Hospital food! Since then she has slept all
afternoon and most of the evening. Nausea is very
common after the surgery, but we thought she may have
been spared. We pray that the rest of her recovery
will be more pleasant.
Amy is a wonderful mother. By all accounts, H is
doing well. Her heartbeat is checked often. I show
pictures of her (before and after shots) to all the
nurses in the maternity ward, and they are amazed. The
neurosurgeon (who preformed H's part of the
operation) has asked for pictures of H,
especially her back, soon after her birth.
We are now praying that H heal, grow and thrive
exactly where she is for many more weeks.
Thank you all for being there for us,
B and Amy Smith
November 16, 2002 (Evan's 4th birthday)
Amy continued her recovery today. She was taken off
epidural and oxygen early (too early) this morning.
She felt light-headed most of day, drank little, and
ate less (Jello). Her IV will be out tomorrow
probably. She is receiving medication through a tube
in her leg to suppress contractions. (You see the
uterus knows that babies normally don't stick around
after C-sections!) A nurse was able to take a few
pictures. There are two good ones of H... okay,
of her back through the incision in the uterus,
before and after. She looks... um, red. Both surgeons came
to check on Amy today and were very nice. Amy felt
better as the day wore on, and it will take a while to
adjust to the medicine. She mostly needed sleep since she
got little last night.
Amy's Uncle Mike is still here with us, providing
support. He is a truly wonderful man. Amy's mom
E and Aunt Ruby are still with the kids in Pittsburgh.
We can't thank them enough. My mom and brother left
this evening, and it was a joy to have them here. We
expect Amy to be released Sunday, but we will wait
until Monday to fly back. Doctors orders. I think
H will continue to be checked with ultrasounds
later in Pittsburgh. Thank you for your help, prayers
and kind words.
God is good, all the time!
Amy (sleeping) and B
Sent: Sunday, November 24, 2002 3:05 PM
Subject: So Good To Be Home
Hello dear family and friends!
Never before has coming home felt so good! After a
couple days of recovery in the hotel, we boarded our
plane to Richmond. God was so good to Amy, giving her
just enough strength and energy for the travel day.
Yes, the kids were thrilled to see us, but not
nearly as much as we were to see them.
After just a few days of rest at home, Amy is starting
to feel more normal, moving around the house much more
and not so short of breath. In another week, she will
probably be feeling pretty much like her old self, but
will have to limit her physical activity by choice to
help ward off contractions and premature labor. We are
blessed to have Amy's mom, E (and for several
days, Aunt Ruby), here to help ease the task of taking
care of E and L. Nana will get her first days
of respite over Thanksgiving when Brian's mom, S,
returns. Be forewarned, if you come to visit which
we hope you will, you will probably be put to work! ;)
As you will recall, premature labor was one of the
risks we had to accept in pursuing the surgery and
we are praying that God will keep H safe in her
sanctuary until He has made her fully ready to enter
the world. Amy wears a pump that gives her a constant
flow of medication to help prevent contractions.
Twice a day for an hour each session, she places a
monitor on her abdomen to record any contractions she
might be having. That information is transmitted over
telephone wires to a home health care agency that
keeps in daily contact with Amy about how she and
H are doing. If she has too many contractions
(this has happened only once so far, praise God!) the
agency instructs Amy on how to give herself extra
doses of medicine, drink lots of water, lie down,
remonitor and retransmit. It is such a comfort to have
this daily medical oversight for Amy and H.
We had our first doctor's appointment post-surgery
yesterday. We were so encouraged to see H
yawning... how bored she must be with all of this!
Our doctor (and we) were delighted to see that all
looks well. Her ventricles remain normal (no
hydrocephalus at this point), her back incision looks
fantastic, and the amniotic fluid was abundant as it
should be. We can not praise God enough for the gentle
way He has led us to this point. We have been through
so many emotions in the last month, many of them very
painful. But now what mostly remains is prayerful
anticipation of holding in our arms the precious
little girl who God has created for us to love. We
find it so amazing that you can "Give all your worries
and cares to God, for he cares about what happens to
you." I Peter 5:7
Our insurance case is scheduled to be reviewed by a
committee of Alcoa bigwigs on December 15. Since it
is an employee-directed insurance plan, the
committee will make the final decision as to whether
Blue Cross Blue Shield will pay for the surgery. We
are in the process of gathering support letters from
doctors and parents like the Williamsons who are
familiar with the benefits of fetal surgery for spina
bifida. We appreciate your prayers regarding this as
well.
Thank you so much for your prayers and please keep
them coming! We will try to send a much shorter note
after each of our weekly doctor's visits to keep you
updated and to keep H on your hearts.
Love to you all,
B and Amy
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