Friday, May 5, 2017

Another Angel

This year a black cloud seems to be looming over me.  After the death of my sister I didn't think life could become more complicated and upsetting.  I was wrong - it did.  We canceled an IVF cycle in January because it started the day after my sister passed away.  Emotionally and mentally I couldn't handle it, even though I knew she'd want us to persist.  We did 2 IVFs to have our daughter and 2 full cycles since then in an attempt for a sibling; 2 others had to be canceled (one for my sister's death and another due to nonresponse to medication).  This time around we've been at this since June and have been faced with more setbacks than I can count. It has me thinking this isn't meant to be and we were doomed from the beginning.

After my sister's death, we decided to wait until the next cycle and started yet another round this past February.  If you understand the IVF world, you basically have to place your entire life on hold during each cycle.  This was our 6th total cycle (4th full cycle).  It's not the typical IVF protocol and is what is called the long protocol.  It's called long for a reason.  Most cycles last a few weeks (maybe 4), however due to my age and nonresponse to medications I had to take the long way and stimulate with different medications 3 weeks prior to the start what I call the "real IVF" (injectable medications to stimulate egg production and surgery to retrieve them). The side effects are no picnic but I have to deal because these are the cards we were unfortunately dealt.  We play each hand as best as we know how....there's no manual for how to handle infertility.  But I keep my poker face on (most of the time) until at home in the wee hours of the night or at extremely unexpected times it all comes undone...and never gracefully and rarely seen (even by my husband).  After 5 weeks or so on medications, we had egg retrieval surgery April 3rd and embryo transfer April 6th.  Usually I am not shy about telling people what's happening but this time I felt the need for privacy.  I think mostly because people have good intentions for when they give advice or make comments but often it ends up hurting when you are already hurt so much.  

For once everything seemed to be going smoothly and we've had the best response yet.  4 embryos or possible future babies as I saw them!!!!  Even with the rounds we did to get our daughter we only ever had 2 embryos ....nothing to freeze if we have to try again.  We were never so lucky and I was so jealous of others that could freeze anything.  This is my life....imagine being jealous of someone having IVF!  I decided to add debt to our already growing IVF debt and add acupuncture.  It worked to get our miracle baby after all!  Research actually backs it up and the doctors recommend it.  But it's pricy on an already expensive procedure, however it seemed to pay off!  The doctor recommended we transfer 3 or our 4 embryos due to my age and history of embryos arresting (stopping growth).  Likely they arrest because they aren't genetically normal, however since we cannot afford an additional $5,000 for PGD (pre genetic testing) we have to take our chance and hope and pray they are fine.  At first I was worried we'd have triplets but my fears soon calmed down when I realized the odds for us are so's more likely NOTHING would take than all least at our age.  Like with our daughter, I had a suspicion it worked so I home tested the day before blood testing with the doctor.  It was Easter day and we were thrilled and SO happy.  Life couldn't get better.  Words just can't describe.  I really believed my sister was helping me from above.  For some reason this time I felt a strong need to keep things to ourselves and a few select people until we heard a heartbeat.  Our luck hasn't been the best lately.  Knowing our ages and chances of things going wrong, I thought it was best.  There's nothing worse than announcing happy news only to have to tell tons of people it didn't work, having to relive your nightmare each conversation.  Awful!  Having  to answer questions a million times about something so difficult would be more than I could bare.  This is why I HATE it when people ask if the procedure (IVF) worked.  It's very touchy and unless you've experienced it's heartaches, you DON'T and CAN'T understand.  Being pressured to tell news before you are ready is awful and selfish for the people who want to know.  But even with the uncertainty it didn't stop me from being happy, even if for a few days.  I knew it may be short lived but i celebrated by buying Kendal a T-shirt that said "big sister".  It was how I wanted to eventually tell everyone she was going to have a sibling.  Only my big reveal won't happen.  I even jumped the gun an did some much needed purging and emptied a spare room.  While we did need to get rid of things....I now have a painful reminder of what will never be.  The empty room that was once a painful reminder before my daughter is back (my excitement got the best of me).  

After getting a positive pregnancy blood test at the doctor they make you go for blood work every 2 days.  A hormone called HCG should double every 2 days.  If not, it's a likely indicator something is wrong and that you possibly have an ectopic pregnancy or will miscarry.  Because the baby is too small to be seen at this stage, the blood work is the only way they can keep tabs on the baby.  I can tell you waiting for these phone calls is absolute torture!  Each time I receive a call I am at work and with patients.  Even with bad news, I have to pretend like life is great and my worries don't matter.   2 of the 4 blood draws we were told bad news.  Our levels did not double and in fact only went up about 55%.  60% is the cutoff for a viable pregnancy in 85% of cases.  2 blood tests were great.  It was a 50% chance something wasn't right but all we could do is wait for the scheduled ultrasound at 6 weeks.  I was beside myself thinking it was an ectopic pregnancy but my fears were eased when we saw the gestational sac last Friday right where it should be.  However they did not see a yolk sac (what gives the baby nutrition until the placenta forms) or the baby.  With our daughter we saw everything right away.  They were slightly worried but said many times, it's still too soon to see the baby....but in one week we should DEFINITELY see it.  At that time I just knew.  I wish I could explain it but I knew.  The fetus grows 1 mm per day so within 7 days it would be big enough to be definitely seen..... only it wasn't.  I went for the scan today and heard the worst news.  There wasn't a heartbeat.  And even worse, there wasn't even a baby.  The baby never grew past last week.  In extremely rare cases it can be missed due to US error or the baby hiding, but this is RARE.  These people are experts, it's not just a typical OBGYN.  My gestational sac where the baby should have  been also measured over a week smaller than it should be indicating the baby stopped growing.  It's called a missed miscarriage.  My body still thinks it's pregnant and will not expel the baby/contents like a normal miscarriage.  I have to induce it via a pill or surgery.  It's so incredibly heartbreaking after all we've been through.  To FINALLY be pregnant after months/years of trying, only to be told you lost it.  Getting pregnant was our issue...not keeping it.  But even WE aren't immune to a miscarriage.  Likely the embryo was not genetically normal.  Most that aren't never implant to make you become pregnant, but this one did.  Regardless it STILL hurts.  Incredibly so.  I go Monday to see another doctor to confirm the baby passed away.  If they cannot see a baby or a heartbeat I need to decide what to do.  I can wait a little while  before I decide (1 to 2 weeks to have scans and convince myself there really is no baby anymore).  However it is more than likely this will turn out badly and end in a miscarriage.  This is beyond heartbreaking and I'm not sure I can emotionally keep doing this...that and we simply don't have the funds to keep trying.  It's just so hard to give up when I KNOW I can get pregnant but don't have the money to keep trying.  Infertility and IVF are so so hard.  But a miscarriage on top is more than even I can bare and I feel I have been pretty strong the past 6 years.  It takes a toll though.  It takes months for just once cycle/chance and I'm running out of time.   It's just not fair.  

Now that my sister has left me for heaven I have an even stronger urge to give my daughter a sibling.  It's a gift.  It's something I can't explain but am heartbroken it likely will never happen.  Talk about major mom guilt not being able to give your child something you want so badly.  All I can imagine is all the sibling stuff I had and cherish now more than ever that she will not get to experience.  I'm robbing her of something so important.  Lately I am so distraught I have been mentally absent (more mom guilt). I want to enjoy her growing up, yet this hampers the experience.  Another thing robbed.  My only comfort is knowing my baby is with my sister.  

Friday, March 10, 2017

My biggest cheerleader

Since my last post my life has forever been changed.  It's not been an easy few weeks.  After several setbacks and a canceled cycle, we failed our IVF cycle in December in our quest to have a sibling for our daughter.  January was the start of another cycle.  The day before it started my sister unexpectedly passed away leaving me, the rest of our family (7 brothers and sisters, mom and dad), her 3 children and husband behind.  It came out of no where and we still have little answers.  We were completely blindsided and as a result heartbroken beyond belief.  Infertility is difficult, but this is a whole other beast.  She died January 16th.  I had an appointment the very next day to get the cycle rolling.  I kept it knowing she would want me to.  She was behind me all the way and was cheering me on throughout this entire journey.  I can't imagine not having her in my cheerleading section.  The medications were started that day but I had to and wanted to help her husband and kids plan her funeral.  I tried my best but just couldn't get my head on straight.  The medication regime is a bit complicated and I messed it up; taking the wrong ones at the wrong time.  If you aren't versed in fertility treatments and hormones it needs to be spot on with little room for error.  After I discovered the error and had that nasty endometrial scratch test (for nothing), it was decided between my doctors and I to cancel the cycle.  It was the best thing.  I wanted to go in with little regrets.  If it failed, I would be blaming myself for messing up. 

So that brings me to the present.  I'm still grieving my dear sister but I know she'd want me to press forward.  Now having another baby means more to me than ever now.  I want my daughter to share the joys I had.  Having a sibling is a wonderful gift and I want to give her that to her so badly.  I'm on week 2 of about a 6 week cycle: 3 weeks on about 9 pills and Tgel followed by 1 to 2 weeks of injectable hormones.  I know I can do this and I will.  It does get least the  physical aspect.  I know somewhere in heaven is my biggest cheerleader cheering me on.  For now I am pressing forward, doing what is asked of me and doing my best to be a good mom in the meantime.

Tuesday, January 3, 2017

10 things your friend with infertility never tells you

Recently I came across a post someone else had written.  I can't take credit for it, but liked it enough to share.  It was from the "Infertility Sucks" facebook page....yes people there are facebook pages out there on this stuff.  It may amaze you.  But so many couples are exhausted from suffering in silence and social media is a great way to not feel so alone and isolated when so many times we are. The post, among others I've read from various people, really amaze me on how much people who can't make babies feel the same, even though our stories are different.  I'd like to share:

"10 things your friend with infertility never tells you:
1) I cry alot (but I still smile)
2) I appreciate hugs. Not advice
3)Yep, it hurts EVERY time (still)
4) I put my feelings aside for others because I feel guilty
5) I am sad for me but so happy for you
6) I need days alone just to grieve
7) I still want to be included in stuff
8) I feel like an outsider sometimes
9) I don't want to hear you complain about your pregnancy
10) I appreciate you telling me your pregnant 1:1"

After reading this list, I decided it pretty much sums up most of what I feel in a nutshell.  My grief and sadness are much like a rain storm.  Some days it's a light drizzle, while others it's a heavy downpour, coming in waves and never seems to end.   Sometimes it's predictable. But many times, like weather, it's unpredictable.  I may expect a sunny day but it turns out to be a rainy one.  Sometimes you can prepare for it and sometimes it catches you completely off guard.  And on a rare occasion, I see a rainbow.  It's not the best analogy but one that most can relate to.  

I went through the list and thought about how each one relates to me and my personal experience.  For some people it may shock you that I DO cry alot.  Sometimes it's the hormones that I have to inject into my body, but mostly it's because I'm sad.  I can't control what is happening to me and it's simply not fair.  It's hard on my body, my relationship and my emotions.  It's a hard pill to swallow when everyone around you seems to be able to have so easily what you are killing yourself to get.  Lately I am learning that crying is not because I am weak, but because I have been so strong for so long...and I am tired. Sometimes the strongest ones are those that smile and cry through the pain.  

As far as advice:  trust me, we've heard it ALL and are spending our life's savings to get the greatest advice of all.  A hug or "I'm sorry it's not fair" is simply enough.  We aren't expecting you to fix it.  

Number 3 is a big one for me.  After reading alot of posts, articles and blogs, I was happy to hear I'm not alone.  The pain of our struggle NEVER leaves me.  The scar will always be there.  Not one day goes by that I don't think about it.  Some days it's a mere passing thought, while others it weighs heavily on my mind and heart.  Ironically even after having a baby, the pain simply does not disappear.  Oh how I wish it did.  It's amazing how simple it is for these emotions to flood back when something reminds you of it.  

If you announce a pregnancy please remember that my reaction may not be what you hoped for and what everyone else's is.  If it is, likely I am mustering every bit of courage I have not to break down and cry in front of you. I reserve that for my own privacy and to make you not feel bad over something you can't help. You should be happy. And remember I am happy for you too....just terribly sad for myself.  It's another reminder of what I want so badly too but can't have.  I feel like a shit that I can't be the friend I want to be, ask questions and be more involved.  It's not that I don't care, because I do, but my own grief takes over me in ways I so wish I could control.  This is why I appreciate you telling me in I can prepare myself as my emotions are sometimes uncontrollable.  I feel selfish for all of this and this makes me feel like a bad person sometimes.  If you only knew what it was like, I hope you would understand.  

The sadness of not being able to make a family is incomprehensible.  My best words couldn't even begin to describe it.   I am so glad, my friend, that none of this you will ever have to know firsthand.  I am not asking you to feel sorry for me, but on occasion give me a "free pass".  There's alot on my plate.  Few things test people's faith and their relationships.  I can tell you this one is big.   No husband and wife should have to endure the stress.  I ask that you "sit with me in the darkness" as I know you can't fix it for me.  I ask that you have patience. Maybe one day I can return the favor.