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"Once Penny's
heart and brain issue was discovered, via ultrasound, we sat down with
genetics to discuss what likely was the cause of our baby's
abnormalities. We also got the full low down on what the amnio risks
etc. are. We decided NOT to go through with an amnio. After our 2 hour
meeting with genetics both Wade and I decided that we would pass on the
amnio. We decided that the outcome of the amnio wouldn't change our
course of action."
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Update
1-1-09 We needed to let you all know that God is answering our
prayers.
* All test results have come back. We now have it confirmed that Penny does
not have abnormal chromosomes!
* We continue to practice nursing, a bit difficult when Mommy can't be there all
the time and the bottles are so easy for little Penny to get milk out of - but
we continue to practice.
* Penny is over her birth weight as of Tuesday this week!
* We've had it confirmed that Penny's form of Holoprosencephaly is LOBAR - this
is the least form of this abnormality.
* After 2 other unsuccessful attempts to put a P.I.C. line in (this is an I.V.
line that is threaded into the body - they deteriorate much slower and are more
reliable in the long run), a successful P.I.C. line was put in on Tuesday
evening - yay! The other I.V.s have now been removed from her hands and scalp -
this makes her easier to hold and nurse as well and may mean not nearly as many
pokes this week as last.
* the neurologist (doctor who specializes in the brain) who was on call on Dec.
24th, Dr. Prieur (sp?), and who gave us the words we needed to hear in order to
make that initial decision as to whether or not to put Penny on a drug called
Prostiglandin (which is keeping her heart functioning as though she were still
inside me) has already agreed to take PennyLane on as her patient! We so
appreciated Dr. Prieur's advice that she freely gave us on Penny's birthday - we
believe it is another answer to prayer that she will be the one who gets to
continue to work with us - simply because she was the first neurologist to meet
Penny.
So where do we need to go now?
Edmonton for heart surgery - please pray that even today (Thursday) the plans
will start to fall into place to get Penny's surgery. This is open heart surgery
on a little girl and means there is considerable risk. We will not be correcting
only 1 heart problem, but 3 heart problems! But I remind myself, despite how
horrible it will be, Penny needs this surgery to live. So we will pray God's
protection over her. We will ask God to give the surgeons wisdom and skill and
we will ask God to help PennyLane to recuperate fully so that we can bring our
baby home.
Thank you all for standing with us,
Sandra
~ for the Perry People
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Update 12-28-08
We've needed to update you all. It has been a busy last 4 days.
Little did I know that my last email to you all was sent only hours before my
contractions would begin. I was scared when it all began. I really didn't want
my baby to leave my womb, where I knew it was safe.
Our baby GIRL was born, without complications (*), on the morning (8:43 AM) of
Christmas Eve. She arrived crying (*), with a good head of hair and with lovely
long fingers that definitely have full movement (*). We found out following the
delivery that in the hallway just outside the door of our delivery room stood
many more nurses & doctors should the delivery NOT go smoothly and should our
baby need extreme assistance. They were never needed. After a quick semi-cleanup
they were ready to whisk our baby away to the Neo Intensive Care Unit (NICU). We
had to ask if we could fist hold her and get a few pictures. They let us do this
quickly and then off they went. Wade followed their entourage while I was taken
care of.
Our Baby Perry arrived sounding and looking healthy. She weighs 6 lbs. 11 oz.
and is 20 inches long. Her skin tone is lovely and she has brown hair (with
body). What we couldn't see, but found out later on her birthday, was that her
heart is very mixed up, more so than even the
original ultrasounds revealed. She has what is called a transposition - it means
.....
... the positions of the vessels that take blood away from the heart to the
lungs and the body are switched. So the aorta comes out of the right <javascript:ShowConten('gloss_holder1471')>ventricle,
while the pulmonary artery comes out of the left ventricle. This means that
blood that already has oxygen flows to the lungs, while blood that NEEDS oxygen
flows around the body never getting to the lungs! This defect is fatal unless
another defect exists that allows blood to mix between the two circulation
systems so that the body gets the oxygen it needs (this 2nd necessary defect is
something else Baby Perry has been blessed with - so her blood is able to mix,
although in a less efficient manner than with normal hearts). Surgery, in this
case, an arterial switch procedure, within the first few weeks of life is needed
to correct the blood flow. This open heart procedure involves “switching” the
pulmonary artery and the aorta back to their normal positions and attaching the
coronary arteries to the new aorta in the correct positions.
Because of Baby's obvious heart defects as well as her holoprosencephaly (brain
malformation) the doctor's think our baby has a chromosome disorder, likely
something called Trisomy 13. Because most babies with Trisomy 13 do not live
long they are not approved to receive surgery for their malformations. Our baby,
without heart surgery, will die. On her first day here with us, the doctor's
took blood samples for chromosome testing. Because of the holidays the doctor's
were unsure when the results would be back - either Friday (Dec. 26) or Monday
(Dec. 29th).
So we would just have to wait and do our best to stay encouraged.
She was born on Wednesday morning. Wednesday and Thursday she had I.V.s in her
hands, feet, & scalp , many of which had to be redone throughout the 2 days. She
had a small oxygen tube giving her added oxygen through her nose.
We made Thursday our NAMING day. Our Baby Perry's name is PennyLane Joy Perry.
I was scared for Friday to come in case on this day we learned that our girl was
not going to be treated by the medical field due to her chromosome makeup. But
it turned out that Friday was a good news day for us. We learned on Friday
afternoon that Penny is NOT a Trisomy 13 baby!!
(****) Oh how my joy bellowed out from me. One of our big burdens had been
lifted off our shoulders - now for the results from the other chromosome
tests..... these we will find out likely tomorrow (Monday, Dec. 29th).
So let me tell you how she looks today. Wade and I drove up to the Foothills
Hospital around 8 AM this morning for our "milk run". It was snowing and the sky
was gray. When we arrived at the NICU, just taking off our coats, a nurse we
hadn't yet met, asked us if we were the Perrys. She had been hoping we were on
our way as Penny was ready to eat! We delivered milk to Penny's station. Penny
was laying in her bed sucking on her soother with her eyes wide open. I asked
the nurse which bottle of the 4 I had would she like. She looked them over and
then took the biggest one. I was helped into a big chair beside Penny's bed. I
held her while she drank down the whole bottle, all the while staying alert and
looking around, even allowing us to hear 3 burps. All of PennyLane's I.V.s,
except for 1 (the one giving prostinglandin to her
heart), had been removed during the night. And at some time during the night her
oxygen had been turned off. She is no longer in a bed with a heater above it.
She is plenty warm. She has now been given the go ahead to drink as much as she
wants - they are no longer going to monitor exactly how much she receives - this
will mean that nursing her will be encouraged!! So many positive steps towards
PennyPea's coming home day......
Now obviously we have much ahead that we would ask for your prayers for:
* The remaining chormosome test results will be revealed & discussed
with us tomorrow (Monday). These could still hold the power to put
an end to our journey should the results be strong enough that
they disallow us to receive heart surgery. Please pray for these
results that they will either be minor or that the results will
show Penny does not have a chromosome abnormality.
* After receiving Penny's Negative Trisomy 13 test results, the
doctor's gave the go ahead for an MRI for Penny's head. She had
her MRI on Saturday morning. These results will also likely be in
either today (Sunday Dec. 28th) or tomorrow. This MRI was to
investigate how severe her holoprosencephaly is - what exactly is
her brain composition looking like? Please pray that we will be
hearing good news. Please pray that God will give us His peace as
we wait and also as we hear the results.
* We need to receive the go ahead to travel to Edmonton for heart
surgery. Please pray that we will be given this and then that the
surgery will go smoothly.
* Please pray that Penny will quickly learn how to nurse.
* We are meeting so many new people, other parents who have NICU
babies, doctor's, & nurses - pray that as we discuss large issues
of life & death, of sovereignty & mishaps that God will be pleased
and honored.
Thank you, Thank you for all your prayers.
The Perry Peas
~Wade, Sandra,
Simon, Sesame, Cisco & PennyLane
When you see this little mark (*) it is a reminder that this was something we
were praying for over these past 3 months.
12-24-08
 Hello
Friends,
Just a quick note to update you all prior to Christmas.
Our baby is still growing and doing well - as it is patiently enjoying my tummy.
We aren't anxious for it to arrive yet, even though it is getting more difficult
to get around. We know that should any health issues still present themselves
once we meet sir-junior-miss, our lives will be slightly out of control, maybe
for quite some time - we'd like that to happen following the busy & happy
Christmas celebrations.
We had doctor's appointments and another ultrasound yesterday (Monday, Dec.
22nd). As I've mentioned before, they are keeping track of the baby's growth and
heart rate. They aren't looking for a change in diagnosis.
As many of you are praying please continue to pray:
* that God intervenes and does what only He can do - heal our baby. We are
asking Him to give our baby a strong heart and a complete brain.
* Pray that the baby continues to grow as the measured growth has slowed down
and I haven't been able to gain weight for the last month
* Pray that Wade & I will feel confident, strong and hopeful as we approach our
baby's delivery.
* Pray for Simon, Ses and Cisco that they will continue to anticipate their new
baby. It has been a surprise to us how
Sesame can talk one minute about how she is so excited about her Christmas
holidays because she is getting a new baby this Christmas and then moments later
may mention a song she thinks would be appropriate for the baby's funeral! Simon
says less, but is aware of more. Cisco keeps asking for this baby to pop out,
right now - he is tired of waiting I guess.
* Pray that the right doctors and nurses will be on shift when we go to the
hospital. Pray that they will be helpful and will
communicate to us effectively and that we too will communicate effectively with
them.
We are thankful that our children have recently had their vaccinations all
updated and so now will be allowed to visit the baby in the NICU. We are also
thankful that although the flu has just gone through our house - Mommy has
stayed healthy. We are thankful so many people are praying and are standing with
us.
Let me leave you with a quote I have had on my wall for 6 years now.
"God's ability to restore life is beyond our understanding. Forests burn down
and are able to grow back. Broken bones heal. Even grief is not a permanent
condition. Our tears can be seeds that will grow into a harvest of JOY because
God is able to bring good out of tragedy."
from Psalm 126: 5-6
Sandra
~ for the Perry People
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12-7-08 Trisomy 13 - we've been told that the doctors believe our baby will be born as
our other 3 children, vaginally and without complications. We
also been told that we will likely get to take our baby home with us for some
amount of time. Our baby has 2 heart abnormalities as well as
holoprosencephaly. Nothing else has been detected at this point.
I appreciated reading on your website today - that all Trisomy 13 babies that
make it to their due dates are already survivors. I am reading
"Not Compatible With Life" by Kylie Sheffield (recommended by your site).
We believe our baby was planned by God and we are willing to do what He asks of
us. We continue to pray for a miracle of healing.
Sandra
your life | your story | your way
Sandra Perry perryss@telus.net
Creative Memories Director
Ordering digital StoryBooks? Please use Customer Access ID #28446562
(403)720-5921 --
http://www.mycmsite.com/remember
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