Worst.Blogger.Ever

So, safe to say, I suck at keeping up with this blog.  But I’m sure you get it-sometimes life just gets in the way, and things get pushed to the back burner, again, and again.

I was motivated to write this post though.  I know when I was going through our infertility journey my blog touched a few people, and in some small way helped them feel less alone.  Maybe I educated a few people as well.

I know how another cause to promote and educate on, and maybe a few people will read this post and feel less alone. 

As I may have mentioned in my earlier and rare posts, Harper has been developmentally behind for a few months.  In order to get her back on track, we started physical therapy with her, to work on her gross motor skills.  A few months passed, and she wasn’t making the progress we had hoped, so our pediatrician referred her to a neurologist, who ordered several tests, including an MRI and a microarray analysis of her chromosomes.

We fully expected all the tests to come back negative, as a large majority of kids with low muscle tone (which she has) has no medical diagnosis for it.  Her MRI did come back normal, as expected.

Her chromosome analysis however, showed a small deletion in the 18th chromosome. A little missing material.

This deletion and missing material indicates, and she has now been diagnosed with, Pitt Hopkins Syndrome. 

In a nutshell,  Pitt Hopkins Syndrome (PTHS) is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. It is characterized by significant developmental delay, problems with motor coordination and balance, breathing abnormalities, seizures and intellectual disability.  Most individuals with Pitt Hopkins do not develop functional speech.  Children with Pitt-Hopkins syndrome typically have a happy, excitable demeanor with frequent smiling and laughter (which totally describes our sweet Harper!)

Since the gene that causes Pitt Hopkins was only found in 2007, currently there are only about 350 children worldwide diagnosed with this syndrome, however there are likely more, that are currently undiagnosed.

Going forward we are gong to continue with her physical therapy and occupational therapy, as well as speech therapy.  We are going to continue seeing her neurologist and will most likely start seeing a developmental pediatrician as well.  Our goal is to give our angel every possible advantage we can, so that she can reach her maximum potential.  We know that there is a reason she was given to us – and we are blessed that she is our daughter. 

A parent never expects that they will have a “special needs” child (nor does anyone expect it will take multiple rounds of IVF to conceive their children!)  You start off with this little squishy bundle and imagine how life will be, and the road they will travel.  All of a sudden, Harper’s road is starting to look a little bumpy, and much different than the one on the map in our heads.  Our challenge, as parents, is to accept this new road and embrace it.  It can’t be changed, but her journey can most certainly be affected by how we handle this, and how with determination and love, we do everything we can for her and with her.  And somehow, in learning how to navigate this, we also have to remember that Nolan, is no less “special” than his sister-they are just more unique they we ever realized!

If you want to learn anymore about this syndrome, here is a good website that has some great information.

http://pitthopkins.org

XOXO

2014-08-23 10.09.43 Processed with Moldiv

 

Rainbow Baby

And I can’t wait.  I’ll go ahead and spill the beans and let you in on a little secret-I’ve been testing since Friday and getting positives on Dollar Tree HPT’s!!!! So, I’m fairly confident that tomorrow’s beta is going to say I’m pregnant!

I’m still on pins and needles waiting to find out what the actual beta is!  And then to see if it doubles.  And then to see if we have a heartbeat.  And then to see if we still have a heartbeat.  But such is the life of a pregnant after loss, IF’er.  Its going to be a long 9 months (hopefully!) One day at time.

A few weeks ago this was in my fortune cookie-I’m taking it to mean soon I will have my rainbow baby!

Snuggle in my Embabies!

Saturday was transfer day!  We were able to transfer 2 grade 2 embryos (an 8 cell and a 10 cell), along with a grade 3, 12 cell embryo.  The transfer went smoothly and since then I’ve been doing ALOT of taking it easy!  I’ve been reading and catching up on my DVR:)

The next week is going to drive me crazy!  Right after the transfer I was so worried about transferring 3-what if they all stick around!  There is no way I can safely carry triplets!  Now I’m mostly scared that none of them will stick.  While I’m realistic, I can’t help but feeling like this has to work.  I’m already analyzing every twinge and symptom-I’m crampy, is that bad?  I’m not crampy, is that bad?  I don’t have any symptoms yet-What.does. this.mean???? I’m already thinking like a crazy person.  I’ll just do my best to keep the crazy under wraps!  Ultimately I know that the outcome is out of my hands-and I just have to take it day by day and keep living my life.  The world doesn’t stop for a crazy infertile!

Let me present 2 of the trio-Embie A and B!  (12 cell fat boy had his own picture)

And here is Hubs, MD, ready to go into the OR for transfer

Tomorrow is Egg Retrieval Wednsday!

Tomorrow is the day.  This cycle has been full of ups and downs-YES! Things are looking great.  NO!  We might have to cancel you.

So, just getting to the egg retrieval feels like a success.

We are only anticipating 5 eggs, but that gives us a fighting chance.  We will be ICSI’ing all of them.  Our plan is to transfer 3 or 4 of the embryos (if we have that many to work with)  given my history.  Even if we get pregnant with triplets lets say, with our history there seems to be a good chance that they won’t all make it.

My fingers are crossed and prayers are said that tomorrow goes smoothly and that we get some healthy, high quality, mature eggs-that will hopefully turn into our take home baby/babies!

The Bi@ch is Back…CD 1

So, as I expected (I’ve already POAS several times, hoping for another miracle) AF has made her appearance.

Off we go!  At the end of this cycle month (the last 3 days) we will start the estrogen priming portion of this IVF cycle’s protocol.  After I get my next period we’ll have a baseline and start stims.  It still doesn’t feel real.  We were geared up to start this and May and didn’t, so its hard to believe this time we will.  I know that the chance of having a second miracle is slim to none, so I’m trying to get myself psyched up and excited for this next round!

This next month I’m going to concentrate on me-and doing things that make me healthy and happy.  I’m taking a one month Pure Barre class-its strength training using small movements and ballet barre.  I’ll keep going bi monthly for acupuncture, I’m going to keep alcohol drinking in check-not because I think it will impact my IVF cycle, but because I know it can impact me negatively-both overall health and mentally speaking.  I’m going to try and cram in a whole bunch of fun-hopefully a concert and football game or two.  This is my prep time-do to me and get ready! (or not)

Hello world!

So…….I’ve gone and done it.  I’ve started a blog.

Its something I’ve thought about for awhile, but I’ve always held back because I didn’t know if I would have enough to say.  Its the craze de jour’ – chronicle your life and start a blog!   I’ve decided it doesn’t matter if mine gets lost in the shuffle, because at the end of the day, I want this for me.

Anyone who knows my husband and I, knows that the past two years have been rough-its been a long road we’ve traveled, as we’ve struggled with infertility and pregnancy loss.  In a nutshell, we have been trying to have a baby for over 2 years.  During that 2 years we have had 3 pregnancy losses.  The past year has been filled with infertility tests and treatments-I had no idea the amount that I would get poke and proded, or how much I would learn (but never want to know) about the reproductive system.  All of this has yielded the diagnosis of DOR or Diminished Ovarian Reserve.  This diagnosis is a punch in the gut-not only is getting pregnant difficult-but I’m quickly running out of time-something I never thought I would have to deal with at 30!

As I’ve dealt with infertility, reading the blogs of other women in my shoes has been a godsend.  They have made me feel less alone, and if my blog can bring peace to just one women who is dealing with infertility, then I’m happy.  Infertility is its own special kind of hell, and one of the worst parts is feeling isolated.   There is such a sense of loss and disappointment.  Your life is not as you expected-and its completely out of your control.  I truly believe that unless you have experienced the loss of a pregnancy you can’t imagine how it feels.  From the momemnt you find out you are pregnant-you are a mother.  You don’t yet know your child, but you have hopes and dreams for it.  Infertility and pregnancy loss carry their own grief, and not one that many people can emphasize with.

Aside from reaching out to other women, I want to remember this time in our lives, no matter how hard, and never want to forget what we’ve been through-as we continue our journey, “waiting on a angel”.

Xoxo