2.25.2011

Estrogen and Factor V-Updated*

You have to read this if you've been dx with any type of clotting disorder.

As soon as I had Charlie, just moments after, I was asked something about his name and if we had a girl name picked out too. I said something to the effect that we would just use it in the future.  I wasn't confident we would have more children, I was confident we wanted them and we would try to.  Everyone in the room (and there are a lot more than you'd expect) was shocked I was interested in thinking about #2 so soon.  They joked no one speaks of #2 that soon.  I said, of course-#2, #3, etc and grinned.  My husband wasn't surprised.  He just laughed and shook his head and he likes to retell that story.

Somehow, I don't remember the exact conversation, it came up again with Anthony.  Again, I was quick to talk about wanting more children.  Again, the shock.  Again, my husbands' knowing smile.  God willing is always part of that statement; whether spoken allowed or not, it is implied.

IF is never far from my thoughts. That is a big difference between moms after IF and other moms. I never take for granted I will be able to have another child. Hopeful, yes. Confident, no. Around Christmas I realized that if we were going to have #3, an additional challenge stood in our way. At the time, it was an unkown, and I wanted to post once I knew a happy answer. But, so far, there isn't one. It continues to be a waiting game so I decided to post about it now, to inform and also to ask for prayers.

I probably visit the doctor too often, but I feel better safe than sorry.  The day after Christmas I went to the ER because I couldn't get into a doctor.  I had been sick with that awful strep like virus, but at night I was getting the horrible feeling my throat was swelling shut.  It probably wasn't, I knew, but just in case I wanted to be seen.  It was really creeping me out.  Well, my throat wasn't swelling, it was just all the junk running back and so thick (lovely), but I did learn something especially important.  As the PA was taking my history she said, you know with factor V you should never be on estrogen.  I replied that I was on estrogen to conceive both of my babies.  No, never again, she said.  She and her sister both had factor V.  Her sister died on estrogen, she told me; it made clots more likely and it was a clot that killed her. There is evidently  government website out there now to increase awareness.  You are 80 times more likely to develop a clot, she told me, on estrogen. Its along the same lines of why we are told not to smoke and be on the pill.  80 times is what estrogen always does I guess, but this is a bigger problem with those with any clotting issues.  Even though I just have one gene? Yes.  Even if I am on baby aspirin? Yes.  What about hcg I asked?  She didn't know.  What if this is just to get my level to where others already are, not higher?  Doesn't matter. 

Well, you can imagine I was in quite the hurry to call Dr. Hilgers.  Due to the crazy business of their office and the holidays and snow, etc., it wasn't quick either (though I spoke to a new nurse, so they are hiring more people to handle the increased load).  Basically I wasn't told much.  Yes, they agreed, I am not to be on estrogen.  The nurse asked if they knew I had factor V, but she saw it in my chart before I could answer.  Clearly they had dropped the ball.  Everyone makes mistakes.  No harm, no foul.  I am okay.  I have two babies.  But now what?  She said I could still be on hcg.  What if my estrogen is still low?  Well, we will cross that bridge when we come to it.  It may not be.  Hcg was enough for my peak plus 7 est level to be fine for my first two failed pregnancies (that isn't why they failed).  But after my second miscarriage, it bottomed out even on hcg and it took 2mg of estrogen on top of the hcg post peak to bring my level back up to normal range.  So maybe it will go up enough with the hcg this time.  One can hope, even though it didn't go up enough on hcg alone after Charlie.  But if it doesn't, I didn't get any sort of plan of action revealed to me.  How important is the post peak estrogen level in getting and maintaining a pregnancy?  No real answer was given for this.  I am not much more knowledgable than I was in the ER.  

The next steps given were ones I am intimately familiar with already.  Wait for my cycle to return.  Get a peak plus 7.  We will medicate based on this.  The soonest I can try is the third cycle.  First cycle get a peak plus 7 level.  Second cycle medicate based on tests and retest.  Third cycle try and continue the peak plus 7 levels monthly as well as the cycle reviews until/if pregnancy is achieved.  With Charlie, I nursed a year even though I faded way back after 9 months due to 5 bouts of mastitis severely affecting my supply.  Despite this, I didn't have my cycle return until he was 13 months.  (AJ was conceived on the first cycle we were allowed to try -the fourth cycle was what we were told that time).  So, it may be another 13 months of waiting.  But maybe not.  I guess the first baby doesn't indicate the cycle will return at the same time.  Still, it could definitely be awhile.

What to do in the meantime?  What can I do except wait.  Pray.  Trust.  Enjoy my two beautiful children. 
TCIE or Dr. Gianna, if you are reading and know the answer to my question-how important is post peak estrogen to a newly conceived baby...and are there alternatives one can take in addition to hcg to raise the post peak estrogen without increasing my clotting risk...?

***UPDATE I went and saw my ob again recently (told you I visit the doc a lot!)  The bleeding was still going on at 12 weeks. Of course, as soon I made the appt (Murphy's law), it stopped, but I didn't dare cancel it.  Turns out I passed another nickel sized clot and that was probably why I was still spotting.  After that I literally could feel my uterus contract a few days and now all is well.  FINALLY.  Except the freaking yeast infection I got from the mastitis antibiotics.  Wow, tangent. Sorry. (I clearly write like I talk and I appreciate you putting up with all my typos, etc.  I know if you do something, you should take the time to do it well, but right now taht would mean not at all and I can't imagine that right now)  Anyway, visit the ob/gyn and mentnion the estrogen thing.  He says since I am a) one gene not two and b) I wasn't on much estrogen and c) I wasn't on it many days or many cycles, he would feel comfortable putting me on it to conceive if needed.  He said it was more like estrogen therapy for menopausal women or something that would be too much. Hmmm.  He is very pro life awesome Catholic man who trained under Dr. Hilgers for a week so far and is very new to Napro.  I am wondering, from his response, if Dr. H would have knowingly kept me on it thinking there wasn't much risked until I called and said "is it true there is this risk, etc".  I mean, it seems like a liability if he kept me on it after that right?  Or is their normal protocol not to?  It seems news to the nurse, but then again, it seemed news to all of them I was factor V despite my dx in the chart.  Anyway, I told dh and he is such a numbers man, he wanted to know what kind of risk we are talking about.  It is hard for him, a CPA, to make a decision without facts.  Whereas I am thinking, okay, I will go on it, but not for more than three cycles :)  Man, what we'd do for those babies.  Is that dumb?  I mean, I want to be around for the babies I already have!  I guess that is where the numbers come in...


My head is spinning.  It is a long time to wait with the unknown.  I am glad to have the info though, and I think it is important to share it with anyone who has a clotting dx.  I have two sisters with the dx-one threw a blood clot in her lung 8 months pregnant and the other (though not officially dx) had a 2 inch clot as a result of an IV.  My mom almost died of DIC (related?) where her blood wouldn't clot and she almost bled out during a D&C for a baby that passed at 5 months, and my mom's side has some crazy clotting issue we all tested neg for but I can't recall the name (very serious though).  I am glad to pass this information on to my family and to you, my friends, in case it is helpful.  I am sorry if it puts any stress on you like it did me, but I feel knowledge is power, even if it is sucky knowledge.
And sort of off topic (but aren't I always?)...I think there are a lot of things unique to IFers, both before and even after they have children.  Once a part of you, always apart of you.  That is why I am so grateful for this community.  We have fellow Catholics to relate to, to pray for us, to give us hope, understanding, and compassion.  I appreciate all of those that take the time to read my blog.  I know that time is a comodity for sure, and I especially appreciate those with IF actively ttc that are still able to read given the content is very mother focused at this point.  I don't want to apologize, it is where I am at right now, but I am grateful that you all can be truly happy for me and I can provide hope to you on your journey.  I continue to read as many blogs as I can.  It is entirely random who I read though, as I can't stand to shorten my blogroll which is already too short in my mind.  I get on, read the most recent at the time I am on until my time is up, and that is how it goes.  I often read but don't comment, but know that I am reading and doing the best I can.  I appreciate each and every one of you, and love to stay updated on your lives.  I continue to pray for you intentions.  Please pray for mine- that I can patiently wait, and that I won't need anything to conceive that I am not allowed to take.  

2.21.2011

Valentine's Day Card-Outtakes included

I loved the idea of a Valentine picture card and knew my husband's parents would too since they live out of town.  It was...an adventure to say the least.  It took an entire two days and so it didn't even make it in the mail until Valentine's Day!  You see, I didn't realize the implications of putting a very mobile two year old with the pictures you want to be seen.  He tried initially, but the idea of props was new to him.  He gave his best GQ look, but....

 Then he got overposed and wasn't exactly natural.  He looks scared to move.  In reality, I recall him being quite squirmy.
 Forget about posing the two of them together-Charlie was just plain over it by then (don't know why this uploaded sideways and won't let me change it!)  At least he was happily moving on to other things.  Tears and valentine cards don't exactly go together (see AJ).  Brother was likely loving on him a bit rough (hazard of being the second child).
 Never fear, I had a back up plan just in case.  Max is less than thrilled, but he has been humiliated more than this, so he decides to just get through it quickly so I will leave him alone.

 Finally, after breaking for 24 hrs, I had learned from my mistakes and was able to start fresh and with lowered expectations.  Please ignore the snot, food on his face, and the fact that AJ looks a bit, well, overstuffed :)
 There's the Charlie I know and LOVE!  (Good thing this was the one.  Immediately after I took this he ripped the paper in half.  No, I am not kidding).
 And my AJ.

So there you go!  A hard (two) days work!

2.17.2011

How the Sugar Snap Peas Ended up in the Broccoli Cheese Soup

Today I flunked motherhood.  I am sure every mom has one of those days where they feel like the worst mom on the planet.  Today was that day for me.  At least, deep down, I know I am in good company.  And it least it was a laugh/cry kind of feeling and not a cry/cry kind of feeling.   

Tonight dh and I were going to watch my friends' children.  They are the same ages as ours and they had watched ours on Saturday for our date night.  Tonight was our turn.  I worked from home and everything was going smoothly.  I had done everything on my work list, plus showered and had the beginnings of soup on.  I called my sitter to tell her I was on the way, but could only stay a second as we were expecting company.  I left the soup on as the sitter lives less than a mile from me and the noodles needed to soften for another 15 plus minutes. 

I went and got the kids.  I was in and out.  I pulled into our driveway, but my garage door wouldn't open with my transmitter.  It had done this before, but not since I replaced the battery.  I thought that problem was fixed!  I turned off the car in the driveway, grateful it wasn't cold like last week, and got out to unbuckle Charlie first.  As I was unbuckling him I saw something out of the corner of my eye. It was the neighbor's dog.  Not on a leash.  I left Charlie unbuckled and turned to pick him up.  He came to me, thankfully.  I looked back at the car and decided the easiest thing to do was to leave the kids in it and run the dog next door.  Charlie had picked up my keys and was happily playing and I knew he'd be fine.  I could see the car from the driveway and that way I could go really fast.  Plus I didn't have to worry Charlie wouldn't be safe since I didn't have enough hands. 

I ran the dog over to the grateful neighbor.  We chatted for a second on the porch (where I could see the car) about how her kids had Valentine's for mine and how her oldest had croupe.  And how frustrated she was her dogs kept getting out.

I went back to the car to get Charlie out and saw he was in the driver's seat.  Duh, I left him unbuckled.  He loves the steering wheel.  Not smart of me.  The first of many times I would say that tonight.  I reached for the door handle.  Locked.  You're kidding me?!  How could I be so stupid?!  I recall Charlie was pushing buttons on my keys, which are now nowhere to be found.  I have a second set in the house.  By now Anthony is screaming his head off.  Today, of all days, he was up 4 hrs without a nap at the sitters.  He was beyond tired. 

The second set of keys are not accessible.  Every other time I couldn't get the garage door open as I pulled up, I also couldn't get the keypad to work. Its like it sends the wrong signal and shuts down.  The battery on the key pad is new too, and it works every other time, just not when it won't open from the car.   I tried just in case, but no luck.  During these times I would go in the front door.  But reality is sinking in fast.  I can't.  Because I am locked out of my house.  The house with the soup on the stove (I can hear my mother's voice in the back of my head telling me not to do these things!).  And I am also locked out of my car.  Where my babies are.  Crying.  Okay, that isn't exactly true.  Anthony is crying.  Charlie is laughing and turning the stearing wheel. Did I mention that are friends are supposed to arrive any minute so we can watch their kids?!  Oh so humbling.  I see the irony as I am clearly not fit to watch my own!

I try, to no avail, to get Charlie to unlock the car.  First of all, he has no idea which button is unlock because there are many and it doesn't stand out.  He only half tries before going back to the stearing wheel.  Secondly, he is keenly aware that he is sort of doing something wrong, and he is loving it and trying to get the most out of every minute because he knows it is short lived.  He is pushing every lever and button and ignoring my pleas and bribes to push this button right there.  I am trying not to sound desperate, but I was telling him everything from I have a sucker inside the house to poor brother needs him to push the button and so on.  I am getting nowhere.  I confess to a neighbor walking their dog.  I have her sympathy, but no ideas. 

I tell myself, at least it isn't cold out.  At least the kids are safe and where I can see them (I hadn't thought yet that Charlie could put the car in neutral and roll into the street).  The chances of the house catching on fire from the stove are minimal.  This is more about my own embarrassment and being humbled by the situation.  I think, what are the odds?!  Definitely one of those laugh/cry kind of moments.

Since my cell is also in the car, I have to humble myself more and admit to the neighbor and borrow her phone.  My husband is only ten minutes away at work and he can get us out of this mess.  But that involves admitting to him too, which I quickly do, grateful that that is the worst it will come to.

I go back to the car and find that Charlie has the keys in his hands (I thought they were under a seat or something).  He is pushing buttons again and the car unlocks.  I am quick to open the door before he can lock it again.  I get both kids into the house, let the dog out, turn down the soup (no fire, it didn't even burn!)  That is when my huge water cup from the hospital literally out of nowhere falls of the edge of an end table and spills all over the wood floor.  I had just filled it before I left.  I clean that up, then put poor Anthony to bed (so tired he was!), and then go back to the soup.  The broccoli cheese soup.  But by this point I am so flustered, I put sugar snap peas in instead of broccoli. 

My husband comes home and brings me chocolates.  He knows I have had a bad day and doesn't judge me for all the mistakes I made.  My Valentine.  Our friends come and drop their kids off.  I am grateful they weren't earlier. I must say, all in all, it was definitely a learning experience and a Valentine's day that will not soon be forgotten!

2.14.2011

A Love Story for V Day-My Own

Since many of us love a good love story, I thought I'd direct you back to the post on my engagement post in honor of Valentine's Day. While I am no Pioneer Women (lol), it is certainly special to me, and fitting since he proposed on the Saturday prior to Valentine's Day.  I posted the engagement story where it was fitting within the larger backstory of my conversion, etc, but it was cut and pasted from the very night of my engagement.  Yes, at 5am, I sat down at the computer when I couldn't sleep and wrote every bit of it while it was fresh in my mind.  I didn't want to forget one moment.  We celebrated by indulging in a wonderful steak dinner at the same restaurant where it all went down.  Dh jokes every year he should have popped the question some place cheaper :)

And one more thing, guess who was conceived on Valentine's Day?  My sweet Anthony on a cycle I called a likely bust. So now you can look at anyone you know with a three month old and give them a little wink.  The secret it out! :)  I pray for all of my IF sisters, that your "likely bust cycles" will become the next miracle conception story!

2.10.2011

Because You are a Captive Audience...

...and because I can't unveil this to anyone in "real" life yet, I would like to share with you my dissertation dedication page. I will be done in May, and even though it is not complete at this moment, laying in bed this morning this dedication page started coming to me and I had to put it down on paper.  I am sure it needs to be cleaned up a bit, but this was my first shot and I have to admit I really like how it came out.

For those of you who don't know, I started this program EIGHT long years ago.  I applied before I met my husband even.  We started dating just before I received my acceptance.  I had my faith conversion during this program.  We found out about IF before we were married, during this program.  I got engaged just prior to my hormone series, during this program, and planned a wedding in six months during this program.  I took two weeks off this program to go to Omaha for my surgeries and initial diagnostics with Dr. Hilgers.  I have had two D&Cs, two laparoscopies, two miscarriages, and delivered two babies, all during this program.  This program taken a lot longer than initially anticipated, but when I look back I can't believe I did it at all in such a short time!  The idea of the end being in sight brings me to tears quite easily.  So, without further ado....

This dissertation is not my own, but belongs to so many wonderful people.
Specifically, I would like to acknowledge:
My advisor, X, who is as much a patient person as he is brilliant and ground breaking.
X, who is as gentle as they come, yet a fierce advocate for children and disabilities.
My friends, coworkers, and mentors, especially X who brought me into the world of systems change, and treated me like an equal; thank you for letting me soak up your wisdom (and for teaching me to love coffee when I needed it most!);
X, who gave me more than one pep talk along the way about what was truly important in life;
X, because you are my “person,”
and X, who was the first to instill this passion in me and whom I have been able to share every important milestone in life with; I am glad this dissertation was no exception.
To X and X, two hidden treasures in the University I am grateful to have discovered along the way.
To my husband who has been there with me through it all, from getting into the program, to its completion, and every tuition payment in between.
To my family, who always put education first from the beginning and gave everything they had to that end, especially their time and encouragement.
To God, because with Him all things are possible,
And to my four children conceived during this program-two in heaven, two on earth. Because some things are too important to put off, and because Mom will always be my favorite title.

2.09.2011

Time to Go Back To Charting

Yes, and I must say I am not looking forward to it just because I am out of the habit of paying attn.  But then, that is exactly why I need to chart.  See, I.am.still.bleeding.  Yup.  "Just" spotting, is what my doc office said.  Well, I think so, but then I haven't been paying all that much attention.  Just annoyed.  They reminded me I had a D&C two weeks after and that the clock started over then.  Still, AJ will be three months in a week. Crazy how time flies!  So I don't personally feel I should still be bleeding.  But I haven't told them I still am because a month ago they thought it was "just spotting" "no big deal" and I was maybe starting my period.  I highly doubted that.  And clearly I wasn't unless this is a month long period, which would be a first.  Though anything is possible with my crazy body.

Recently it changed though.  I think it either stopped a few days and restarted or got brighter in color because I immediately felt something had changed. Which makes me think maybe I really am starting my period?  I didn't start until I totally quit nursing with Charlie, but every time is different I am told and I have several friends that are nursing babies around the same age and started.

Also, my hormones are a wreck because my eyes are so dry I can't wear my contacts more than a few hours.  So I'd like to get a handle on what is going on.  So, its back to the stickers I go.  And I really am silly for complaining.  Those stickers changed my life.  Its just going to require some retraining.

2.07.2011

More Insurance Insanity

Because if we can't laugh about it we will cry, right?  I feel like I am on another planet talking to insurance. 

Mine currently is Ci.gna.  Here is how a conversation over the weekend went.  I get a call.  Hi, this is Cigna and we are calling to let you know about a wellness benefit you qualify for.  Great.  What?  Its for patients with chronic lower back pain.  That's nice but, um, I don't have lower back pain.  Oh.  Did you recently receive physical therapy?  Learily (because I don't know if this is some trap by the evil organization), I reluctantly reply that I did receive PT, while I was pregnant. There is no chronic issue.  Okay, they accept this but then here is the kicker, please stay on hold while I transfer you to unenroll from our wellness program.  Excuse me?  The one I never enrolled in?  And now I have to wait?  Yes, evidently there is no way around it.  Had I been any busier I would have hung up.  I mean really, what are they gonna do?  Keep me enrolled in a free benefit?  Good grief!  But I hold.  Like a good girl.  Until they come back and say due to high call volume they can't unenroll me at this time and can I call back?  Are.you.serious?  I was sure to point out the insanity in all of this and that the high call volume was due to others being mistakingly enrolled, lest it escaped her.

Fast forward to today.  When I get a call from my delivering hospital to see if I am going to pay the bill for Anthony's delivery.  I say, no, not yet because I was billed $1600 and it is clear that insurance hasn't processed it.  She looks into it and tells me insurance denied it because I haven't called to notifiy them I don't have a second insurance.  Seriously?  I have to call to tell them I don't have a second insurance?  There isn't a secondary on anyone else in the family.  Can't we just take the giant leap and make an assumption on this one?  Seriously.  Then the gal proceeds to tell me they always do this or something else, like say they weren't added in time or anything they can as a stall tactic to pay.  We have to pay immediately of course, but evidently those rules don't apply to them.  Its like a separate reality when it comes to insurance.

Update-I just called Cign.a to let them know we don't have a secondary but...their systems are down and I was told I would need to call back another time. 

2.04.2011

Funny Video of My Sons-He Pushed Me

I think this video nicely captures the love Charlie has for Anthony, but is also a preview to future quibbling that is bound to happen and a nice illustration of what "two" means around our house :)  Please ignore my voice-ugh!
Also, if you haven't already, please take the time to go back a post and take a minute fill out a national survey on infertility.




2.02.2011

For Karen :)

From Karen.  Please take part in this and help spread the word!

I visit the Resolve (national IF association) IF forum to try to suggest Napro to other women. I emailed the site and asked them to put in a section on IVF alternatives and I was ignored. I saw this request for a survey today. I posted the request below.


Can you please take the survey and give your opinions about Napro, IVF alternatives etc. They want to identify the top myths....Well I say that one of them is that Catholics have no options and that if you have unexplained if that you have to do IVF or else. Please help me to support getting this message out. Maybe if enough of us take this survey we can get some mention on their site. This could be a small first step...If you have a blog, consider posting this.

Thanks

Karen

************ ********* ********* ********* ********* ********* *******

National Infertility Awareness Week® is April 24-30, 2011. RESOLVE needs your help in identifying the top "myths" associated with all family building options. We'll take your feedback and ask experts to share their knowledge breaking down the myths. Our goal is to use this information to increase public education about the disease of infertility and recognize the many ways families are built.

Please give us your feedback here.

http://familybuilding.resolve.org/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=14542

If that link does not work, google "resolve infertility survey"