Day 6 - BAH!!

Yesterday we went in for an update scan and blood draw. It's pretty routine and I'll have at least one or 2 more of those before we go to 'harvest'.

**Side Note** I don't think I've ever said anything about Reproductive Resource Center and Dr. Brabec. RRC is a bunch of idiot robot monkeys. I hate everything about going in there and the more I have to go the angrier I get that they're still in business. Now, I know I don't pay these people to have personalities, or even care about me as a person. However, I do pay them to know what we're going through, figure out the best plan of attack, and not lie to us. The sad thing is that if you complain about the service at a place like this everyone immediately thinks it's because you're bitter because you don't have a baby. If you do have a baby, then you probably forgot how stupid Dr. Brabec is....it's a viscous cycle....oh well.  If we do a round 3 we're not doing in at RRC, that's for sure!

Anyway, back to my story (I feel better now). The scan didn't give us the results we wanted or were hoping for. Last time, at this stage in the process, the technician counted 17 follicles. This time only 14 - even though I'm on  a crap-ton (yes, that is a scientific measurement) more meds. They did say my estrogen levels were about 1/3 higher than last time, so I think that's positive...I don't really know because no one will take the time to tell me what anything means and I'm always talking to someone different.

That's our news for the week and we go back in for another blood draw and scan on Monday morning to determine when we go in for the spring harvest.

Day 3 - Sharin' the Love

I feel pretty good today. I'm exhausted, but I think that's a pretty standard thing these days. My body's doing lots of thinking about baby makin'. My body is also doing all kinds of things that I didn't know it could do at one time, but I'm down to being able to count all of my drugs on two hands (before I had to take off my socks too).

I was looking through my (huge) box of mail order injectable drugs today and realized they keep sending me crap! Every time I call them they send me more than enough of everything. I think I have enough 'sharps' to last a lifetime and a half.

That got me to thinking, maybe I should donate all of my unused needles and alcohol wipes to those less fortunate heroine addicts. I mean, come on, I'm not going to be able to single handedly stop them from shooting up - I might as well do the next best thing and make sure they're using clean needles. The problem is, I don't know how to get my items to them. Do I just leave them in a box on a seedy street corner? "Please Take if Needed" Do I take them to a homeless shelter? Do I get in good with the local meth lab? I mean, and really, I don't just want my sharps to go to just anyone - I want to make sure they're going to a good home, where the family will take care and love them.

...I guess I'll just keep them safe with me for a while until I figure out what to do with them...

Let's Start Over

So it's been a long time since I updated this. But, seeing as I haven't told anyone about this then it doesn't really matter, does it?

Today is Day One of the 'real' drugs for round two of IVF. (Steroid pills, birth control and baby aspirin don't count) The doctor has upped the dosages in hopes that we'll get more eggs, which means more embryos, which means more testing, which means the higher possibility for babies. We don't really talk about round one of IVF because we didn't have the outcome that we were hoping for - and of course we were devastated.

I have a good feeling about this time around. Like I tell Kyle on an almost daily basis, I'm hopeful but I'm not getting my hopes up. Yesterday we went out to breakfast for my dad's birthday. Being the odd family that we are we went to the Miami County municipal airport (don't ask) and I had this terribly odd feeling that I would be taking my kiddos there soon to watch the airplanes take off and land.

Going through this process also reminds me, about 6 years ago, when I cursed Kyle with triplet girls. Little did I know that I was actually cursing myself - or that it could be so close to a reality. One afternoon while we were talking to our social worker (Kate is awesome! She helped us through everything with Madelyn) we said that we would implant every normal embryo we have - if we have any - this time around.

So, here we go for another roller coaster ride! Stay tuned.

Did you know...

That home pregnancy tests are HSA eligible?  I didn't but I'm now the proud owner of 2 tests and my $12!

My New Least Favorite.

Being stabbed in the cervix.

It's happened three times in as many weeks.

I think I'd rather step on a Lego barefoot.

The Diagnosis

Email sent July 28th:

Kyle and I went to meet with the geneticist yesterday and I just kinda wanted to give you an update. We still haven’t told our parents anything but I think we plan to pretty quickly now that we feel like we have all the information. If this is TMI, I’m sorry…

I know a lot of this probably won’t mean much to you (lots of it doesn’t mean a whole lot to me) but it helps me to type it all out.

The geneticist confirmed with us that one of us does carry the condition that Madelyn had. I think they called a balanced translocation. Basically, part of chromosome 5 is stuck to chromosome 13 and 13 stuck to 5.  He kind of explained how chromosomes can be moved around and a person still ‘work’ but whatever.  He told us again that in actuality there is a 50/50 chance that this could happen again. However, after talking to some specialist lady he increased our odds of having another child with a similar condition to Madelyn to 20-40% (my mind immediately goes to, “that’s an F+ “)

We talked in depth about the negative outcomes of our situation. There are 4 different arrangements that the chromosomes could possibly make; 2 should produce a normal child, Madelyn had one of the negative outcomes and then there is the inverse of what she had that would also be negative. He said that if one of the 2 negative outcomes were to happen again there really would be a 0% chance of the child functioning normally in society – and not even like severe mental retardation or something like that, like human vegetable if the child were even to survive after birth. He said he has seen/read about some cases where the person can live until 20 or so but it’s not a happy story. He also said that if we were to find out we were pregnant with a child that had this issue that if we did choose to terminate the pregnancy it would really just be a ‘timing shift’. In a terrible, weird way that makes me feel a little better and that that COULD be an option if it needed to be.

I’ve never really had a clear cut answer on the whole prochoice/prolife debate and being thrown into this situation I feel like the line has become even more blurry. Please don’t judge me too harshly.

We talked about our options and we really have 4 that all seem viable. 1. We try again naturally and hope for the best. 2. We do in vitro fertilization  with pre-implantation genetic diagnosis (IVF with PGD). 3. We find out who the carrier is and use a donor sperm or egg. 4. Adoption

Originally we thought that option 1 was the best for us – why I’m not exactly sure. I’d be considered a high-risk pregnancy (and probably will no matter what we do) and would get all the special treatment insurance would allow and we would know about baby’s genetics by around week 11. But, if the chromosome did not line up and even if we found out at 11 weeks I’m not sure that I would be able to emotionally go through the same pain I did with Madelyn. Then there would be the issues of do we terminate or do we not and the emotional pain that comes with that decision and activities.

I will need to talk to my primary care physician more about it but the geneticist seems to think that we don’t have an unlimited number of times we could try this option either. My ‘lady parts’ are already weakened from my classic c-section I had with Madelyn and because weird parts of it where stretch due to the size of her head. One school of that was (and maybe still is, the geneticist differed to my doctor) that 3 c-sections and you’re done. Put this together with the 40% chance that the baby isn’t health and I don’t really like those odds…

I think our option choice now is option 2. We spoke with Kyle’s insurance yesterday and they cover 3 full tries of the IVF with PGD in a lifetime. That’s a big deal because it is freaking expensive and from what I understand nobody gets insurance like that. Our thought was if we try naturally again, we really have like a 30% chance of having a healthy baby (50% chance of getting pregnant and staying that way and then a 60% chance of baby being healthy) – I don’t really like those odds – and the outcome is not positive. Then, we’ve ‘wasted’ 2 years of time and a whole lot of emotions and in 2 years who knows if Kyle will be a the same job, and if not then we’re out of pocket who knows how much for these medical procedures. If we do this stuff now we save time, frustration, potential heartache, and money.

IVF with PGD is basically the same as IVF with an extra step (from what I understand). They pump us full of hormones and then start harvesting. Then they put things together to create embryos. After the embryos have divided a few times they run tests to determine if the chromosomes are balanced properly then those are implanted and hopefully attach.

Even this has ethical implications that until a few days ago I was really unaware of. At what stage do you think that life begins? Some say the sperm and the egg are ‘life’, or when they join together, or when they implant, or when there is a heartbeat, or when the fetus can life on its own with no help from the womb… To be honest, I don’t know the answer (and, if I determine an answer for me few others will agree with me). If I’m able to say “Ok, this is not wrong. I’m doing this with the best intentions, have my future children at heart while making this decision, and I’ve weighed all of the options and outcomes and this is the right one for me,” then I’m doing pretty good in my book.

Option 3 and 4 for us will always be options but, you know, it’s just not the same…

One thing that I think we have going for us is that getting pregnant isn’t the hard part, it’s having the right chromosomes.

I have a meeting with my doctor today then Kyle and I go back to her next week. We’ve filled out all the paperwork to see a infertility specialist and just need to fax a few things to insurance and have a few tests run before we can meet with them.

We also found out that this issue could have been in our family for thousands of years, or just the one of us could be the carrier (just like the original information we were given about Madelyn).  We still don’t want to know who, of the 2 of us, is the carrier but we feel like we need to give this information to our family. We will obviously tell our parents and siblings first but also feel we need to get the word out to our cousins as well. We could narrow down just who we would have to tell (possibly) by testing our parents and if one of them came back with this chromosome translocation then we would know it was that side of the family we would need to tell. But, right now, we don’t feel like we’re willing to find out who it is and jeopardize our marriage just to lift a slight weight for someone else. That, I know, is selfish but our rationalization is that all of my cousins are much younger and years from having kids and really so are Kyle’s. Once we’re done building our family, hopefully in the next few years, it won’t matter to us who has what in their DNA and we may be willing to find out at that point and direct the concern accordingly. Right now, though, we feel they have the right to know that this could be a possibility and to take precautions if they feel they want to. I don’t believe the likelihood of a cousin having this issue is very high but I need to see if I can get that answer before we announce anything.

Obviously, this isn’t an ideal situation and I wouldn’t want anyone to have to make the decisions we’ve had to in the last couple of months. We also know that no matter what we choose to do someone will think it is wrong; there doesn’t seem to be a one size fits all answer. 

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.