Friday, July 30, 2010

The Update

This email was sent out May 14th:

Hello Family,

After a long week of meeting with specialists, hospitals, and hospice
workers we have many more answers to our questions. None of which were
positive but Kyle and I feel better having answers at least. We learned
that this is probably not a chromosomal issue because baby does not have
any 'facial flaws' and from the neck down baby is perfectly healthy. That
means it was probably a fluke or an issue with a blood vessel or something
- unfortunately, we will probably never know that.

Last Friday we did get some happy news. We went in for yet another
sonogram but this time we wanted to find out baby's gender. We've having a
baby girl and we've named her Madelyn Elizabeth. I’ve attached a couple of
photos of our precious Madelyn from that sonogram. Our little angel is
breach so you will see her little foot on the right side of her face
covering her eye.
A funny story about Madelyn’s name: from the very beginning we knew that,
if our child was a boy, his middle name would be Edward. This is Kyle’s
middle name and his father’s middle name and goes back several
generations. So, of course, in our over analytical minds we needed to make
sure that our child’s initials wouldn’t spell anything that would cause
them to be teased – and out came the spreadsheets. ‘AEW’ – ok, ‘BEW’ – ok,
‘CEW’ – ok…then we got to ‘J’… after a good chuckle we decided that this
probably was not appropriate. That didn’t stop us, or Brookie, from
calling our buddle of joy our ‘JEW baby’. Once we found out that we were
having a little girl and had all but decided on a name we toyed with
giving Madelyn a name that began with a ‘J’ – just because thinking of
those initials always made me smile and giggle…but Madelyn knew that her
name was Madelyn and would only respond to us when we called her by her
correct name.

Luckily, our baby girl is not in any pain now and we will make sure that
she are not in pain after delivery - however, that appears to be all that
we are able to do for her. We are not able to correct the problem so
fixing the symptoms would only 'delay the inevitable' and cause more pain
(physical and emotional) for everyone involved.

Because of baby's head size we need to go in for another sonogram next
week to see if it's getting larger from the fluid buildup (right now her
head measures at about 42 weeks while the rest of her body measures at 29
weeks). If her head is getting larger we have a c-section scheduled for
the following week. However, the problem with this is that her little
lungs will not be fully formed and she will probably basically suffocate
to death sometime after delivery. Ideally, we want to wait until June 16th
– which is the absolute longest the doctor is willing to wait. At that
point, we'll do a c-section and just see what happens.

No one is really able to give us a time frame for our little Madelyn's
life. It could be 5 minutes; it could be 5 weeks - maybe even 5 months.
All we do know is that Madelyn is just as stubborn as her mom and dad are
and will hold out just as long as she can (she really shouldn't have made
it this long according to statistics). Even though her life here on earth
will be very short she has brought many, many people lots of joy and
happiness during a time that we needed it very much.

Every single doctor, nurse, and social worker we've met along this journey
has been absolutely wonderful. I feel like they sincerely care about our
feelings and only want the best for us and our family.

We know that our grieving has only begun and we are trying to plan and
take care of all the ancillary items before baby Madelyn arrives so that
we can enjoy her short life together.

Even though this is a horrific situation and I would never wish this on my
worst enemy, Kyle and I are trying to focus on the 'silver linings' right
now and trying to stick to our routines as much as possible.

•        We are super blessed to have our family and friends around us to care
and support us as we go through this live event.
•        We are blessed to know that Madelyn’s short life will only be filled
with love, not suffer and sorrow.
•        We are blessed to know that when Madelyn joins our Lord up in heaven she
will be surrounded with family that will love her as we would (and
probably keep her more entertained).
•        We are blessed to have gone to Switzerland which made our marriage
stronger and for us to be able to work better as a team
•        We are very blessed to have not found out about Madelyn’s condition
before we did – we could not have changed anything no matter when she was
diagnosed and it saved us weeks or worry and wonder.
•        We are so blessed to have moved into our home when we did. If we had
moved in earlier the nursery would have been complete and if we would have
moved in any later who knows if we would have moved at all.
•        And most importantly, we are blessed to be having a baby girl. I was
informed by Kyle’s father that if Madelyn was a boy he WOULD be going
camping during his short life and if that meant I had to come along
because I was attached to the child so be it.

Webster's Team - Take 2

This is the email that was sent out to our family on May 5th:

I know that email probably isn't the best way to say this. But I'm awake 
and hopefully I will be able to give you all the information I have clearly 
and concisely - I wouldn't be able to do that in person.
On Monday we went in for a routine sonogram (mostly because of my weight 
gain and they knew insurance would pay for it because of that). They found
an 'abnormality' and sent us back over to our doctor right after that to
discuss. Dr. Nash wasn't able to tell us much but set up an appointment
for us to visit the high-risk OB yesterday.
Yesterday we went in for another sonogram and MRI. What they found was
that baby's brain hasn't developed into the 2 hemispheres, is much bigger
than it should be with fluid on the brain, and has a bone growth on the
top of baby's head (they used medical terms but of course I don't remember
them). The MRI wasn't able to tell us much more than that.

We're trying to get an appointment with a neonatalogist for sometime this
week to hear more about what will happen next. But right now the outcome
is bleak. I don't have exact statistics but survival rates outside of the
womb are slim and the chances for a 'normal life' are slimmer.

They had said something about an amnio but the accuracy of a test like
that now might not be correct and would not change our course of action.
They've decided to wait until delivery to get the chromosome work up.

As of now, we're going to continue as through it was a normal pregnancy
and at about 38-39 weeks - if baby makes it that long - I'll be scheduled
for a c-section (because of baby's head size).

Kyle and I, or the doctors, haven't talked much about logistics and what
will happen after delivery, I don't think we have enough information for
that at this point. But, we have been given some information about hospice
and support groups for people in our similar situation.

Kyle and I are just taking things one hour at a time and have busied
ourselves with putting the house together. Kyle's boss told him that Kyle
won't be coming into work this week so I'm not alone - which is nice.

We feel like God sent us to Switzerland to make us a stronger couple and
to know when to lean on each other, and to prepare us for this. This is
obviously devastating news but we're trying to take it in stride and know
that it will lead to bigger and better in the future.