To amnio or not to amnio???

If you’re on Instagram then you know we were tossing back and forth the idea of doing an amnio. I asked the question : “Have you had one or are you considering one?” Most responses were that people had not done them and further they would not do one.  A few people who have done PGD said they would do one if earlier tests suggested something was wrong but that they wouldn’t “risk it” if everything had been okay up to this point. Mike and my OB both felt that we should do one to double check our PGD results. I however, was scared of miscarriage.

Crazy? Maybe, but let’s first talk about what an amnio is.

What is an amnio?

Amniocentesis is a prenatal test that allows your healthcare practitioner to gather information about your baby’s health from a sample of your amniotic fluid. This is the fluid that surrounds your baby in the uterus.

The most common reason to have an “amnio” is to determine whether a baby has certain genetic disorders or a chromosomal abnormality, such as Down syndrome.”

What is the risk of miscarriage from Amnio?

The risk of miscarriage due to amniocentesis is low. Because a certain percentage of women will end up miscarrying in the second trimester anyway, there’s no way of knowing for sure whether a miscarriage following an amnio was actually caused by the procedure.

Estimates vary, but according to the American College of Obstetricians and Gynecologists (ACOG), the loss rate from the procedure is as low as 1 in 300 to 500 — and perhaps even lower if the doctor or center has a lot of experience performing amnios. – from Baby Center

I have been a little bit of a crazy person when it comes to getting this amnio. At our last OB appointment I asked how long after the amnio would I know if I miscarried? My OB smiled and said usually 24 hours. I worried day and night about if doing this procedure would cause harm to my baby. After I posted the question on Instagram I started crying and got really upset with worry. Mike (bless his heart…and his amazing patience) said “You worrying about this is enough reason not to do it.” What a gem. He made me feel so much better and I have to admit a part of me was only doing it because he had said we should.

I called and called the amnio the next day. I realize that the baby probably would have been fine and I may have overreacted but the bottom line is, we would use these results to prepare. I do not want the next few months to be worrisome and stressful. If we are meant to have a baby with a genetic or chromosomal issue then we will find out after she is born.

17 Week Re-cap (this is re-capping the last week, I’m actually 17 weeks 6 days now)

How far along? 17 Weeks

Total weight gain/loss: 8 lbs but I haven’t weighed myself for two weeks. I like the Dr. to do it, it’s a fun surprise at each visit.  Next appointment tomorrow!
Maternity clothes? Everyday all day.
Stretch marks? No, but I can feel my skin/muscles stretching.
Sleep: Some nights better than others, but overall good.
Best moment this week: I think I felt my first little flutter!
Have you told family and friends: Yes!
Miss Anything?  D.E.L.I  M.E.A.T.
Movement:i think so!
Food cravings: Mmmm…deli meat.
Anything making you queasy or sick: Strong smells…
Have you started to show yet: Yes… a tiny bump. 

Labor Signs: No

Belly Button in or out? In
Wedding rings on or off? On
Happy or Moody most of the time: Happy.
Looking forward to: Seeing our little lady at our appointment.

xo

Snail Mail & 14 week re-cap

It’s the most wonderful time of the year and topping my list of traditions is getting the mail everyday. I cannot be the only person who gets super excited to open cards from my loved ones and see what beauty lies inside! I’m not going to lie, I take notes and immediately start planning for next year, “What company will I use? What font? Should we do a picture?” The answer to that is always no because who wants to look at a picture of me and Mike…no one.

Here are a few of my favorites designs this year.

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Minted

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Tiny Prints

Our card was from Etsy and couldn’t be more perfect for this Christmas. We wanted to announce baby Charlotte but wanted to do it in a way that really expressed our excitement and relayed how blessed we feel.

SO from the Mortons to you…

DSC_0115 (800x532)

14 Week Re-cap

How far along? 14 Weeks

Total weight gain/loss: 8 lbs (from 112 to 120)
Maternity clothes? I bought three more pairs of maternity leggings, it’s an addiction. I plan on posting some outfit pictures for inspiration. Stay tuned.
Stretch marks? No
Sleep: I’ve been waking up to pee two or three times a night.
Best moment this week: Vacation started! A much needed two weeks off!
Have you told family and friends: Yes!
Miss Anything?  I would hurt someone to have some deli meat right now.
Movement: Not yet
Food cravings: Mmmm…deli meat.
Anything making you queasy or sick: Strong smells…
Have you started to show yet: I have cute little bump. I don’t think anyone would notice if they didn’t know me.

Labor Signs: No

Belly Button in or out? In
Wedding rings on or off? On
Happy or Moody most of the time: Getting better. I get very HANGRY…and then I apologize to my husband.
Looking forward to: Christmas!

xo

12 Week Re-cap

I saw this on one of the blogs I love to read and it pretty much sums up my thoughts…

PartyingVS.Pregnancy

I haven’t posted in a while, mostly because I am exhausted when I get home but I wanted to give an update about my current status.

 

It’s a GIRL! Charlotte Catharine Morton… CC or Charlie

 

How far along? 12 Weeks, 4 Days

Total weight gain/loss: 5 lbs (from 112 to 117)
Maternity clothes? A pair of maternity leggings – why don’t people normally wear these?! So comfortable!!
Stretch marks? No
Sleep: In the late afternoon I get pretty tired, occasionally waking up in the middle of the night and can’t fall back asleep.
Best moment this week: Our nuchal test this week, getting to see the little babe for about 20 minutes!
Have you told family and friends: Yes!
Miss Anything?  Hot Dogs & Deli Meat!!! Would love to have a few of each right meow.
Movement: Not yet
Food cravings: Everything I can’t have…womp womp
Anything making you queasy or sick: Strong smells…like garbage.
Have you started to show yet: A little bump so far – basically looks like I ate a few too many cupcakes, which is typically the case.

Labor Signs: No
Belly Button in or out? In
Wedding rings on or off? On
Happy or Moody most of the time: Happy during the day and a Grinch at night.
Looking forward to: Getting a bigger bump!

 

 

GATTACA

Growing up my father would watch 60 minutes every night. It is one of those things you remember from childhood that makes you reminisce, like the way your grandmother’s house smelled or the feeling of Christmas morning. Over the years there have been many changes to 60 minutes and one of my father’s favorite parts about the show recently ended. Andy Rooney’s segment was my Dad’s favorite and it would always make him chuckle. Andy Rooney and my father have both passed on but I can happily say I have some great memories and 60 minutes is still reporting on current news and doing me a solid.

“Playing God or removing disease from your blood line?” was the topic of Sunday night’s 60 minutes. It was a segment on PGD testing and how this amazing test has given people the opportunity to remove devastating diseases from the next generation. Mike and I did PGD testing because we are both carriers of cystic fibrosis, and there is a 1 in 4 chance our child would have CF, a debilitating and ultimately fatal disease.

The truth is, many people do not know if they are a carrier of a mutation until they try to have a child and get tested. We both had no idea and had never given any of this a thought until it became our reality. It’s a tough decision and there are religious as well as ethical arguments that go either way, but for us it was about starting a healthy family and we were going to do what we had to do to make that happen.

When one decides to do PGD testing they are given an option of testing for chromosomal defects (that result in diseases such as Downs syndrome or worse) as well. Mike and I went back and forth on this mainly because it was going to cost an extra $3,000 to get the added testing. Ultimately we chose to do the extra testing and in the long run were happy with that choice. We also chose to test for chromosomal defects because we did not want to go through all of this and then still have a baby with a different, and potentially preventable disease. Of course this testing is not 100% accurate but we have significantly lessened the chances of that happening.

There is an argument that PGD can be taken too far.  Along with testing for disease, couples have the ability to choose their child’s hair/eye color or a number of other traits including gender. I personally do not believe in using PGD for these reasons. I feel that PGD should be used to prevent disease and nothing else. Though I do not mean to offend anyone who chooses PGD for those reasons.

I’m happy that 60 minutes has taken the time to address infertility and the struggle so many people face. Assisted reproductive technologies may not be important to some, it may even offend them, but the fact is 1 in 8 couples struggle with infertility. Many of these couples struggle in silence and it’s important to educate the rest of the population.

Dr. Hughes said it perfectly on 60 minutes:

“We all throw genetic dice when we have children. But when you know the dice are loaded and that there’s a really reasonable chance that your baby will have an incurable, dreadful condition, you’re looking for an alternative.”

To view the video or read the article head HERE

 

XO

 

The Truth about the Two Week Wait.

First of all it’s not actually two weeks. Most people baby dance and then two weeks later they take a test to find out if they are pregnant or not. We obviously didn’t baby dance, we transferred on a Tuesday and I got a very faint positive on Sunday, 5 days later.  MasterCard would say something like this:

IVF: $$$

IVF with PGD:$$$$$$$

Being able to get pregnancy results after 5 days: PRICELESS.

We could not be more excited and blessed to have received this amazing news! Almost a year to the date of when we went to see my regular OB after trying for a year unsuccessfully we received our BFP! (big fat positive) It’s been a long crazy year and we are by no means out of the woods yet, but we got a BFP!

BUT let’s be honest about the two week wait…we were stressed out, read other people’s instagram accounts/blogs and took a pregnancy test everyday starting on day 5 but we didn’t blog.

We didn’t post or blog during this time and the decision not to do so was a tough one. We started the blog and it was private, to update our close friends and family about our IVF with PGD journey. Once we made the blog public, people from all walks of our life found it and started supporting us.

As you can imagine, when you take a pregnancy test and you’re essentially 5 days pregnant and it’s positive, posting about it on a blog and telling everyone you know is a little scary!  We wanted to be open and honest to this process but we were also hesitant and scared of what was to come.  Basically, our pregnancy test could have been positive and our beta (blood HCG test) could have been really low.  Essentially meaning we did not have a viable pregnancy.

So we chickened out and decided to document the two week wait but not actually blog about it until after. However, I’d like to give a shout out to @lisaivfjourney and many others on instagram for posting pictures of their tests each day because we stalked them and compared our pictures to theirs. 🙂 Thanks for being stronger than us and putting yourselves out there.

Here is what our two week wait looked like:

5 & 6 Days Past our 5 Day Transfer

5&6

7 &8 Days Past our 5 Day Transfer

7 &8

9&10 Days Past our 5 Day Transfer

9&10

Crazy people, we know.

So that’s what we’ve been doing every morning for the past two weeks.  Our 1st beta (blood test to determine how much HCG is in your blood stream) was on Friday morning and it was 173.

Our 2nd beta is tomorrow am. They say your beta should double every 48 hours so ours should be around 700 tomorrow. Fingers, toes and everything else crossed for that.

thanks

 

Keeping Busy.

So I have a cold… and this is what this week has looked like.

sick

Many women, whether they are infertile or not, go through the glorious time period known as the two week wait. It’s hard to keep your mind off of the impending day (Friday) when we will go take a blood test to determine if we are pregnant or not. We decided to take the planning of keeping busy out of our hands and turn it into a little game. We wrote activities on popsicle sticks and when we were bored or stressed we picked one out and did whatever it said…

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photo 4 (3)

 

My favorite was baking a pie. I don’t bake…but Mike does. 🙂

The next time I write we will be updating you with the results from our blood test and beta (hcg level). Thanks again for all of your support. xo

A pineapple a day…

What do you do the night before you become pregnant? Well if you’re me you cut up a pineapple into 5 sections and prepare to make fertility smoothies! Crazy? Maybe, but we infertiles are willing to try anything!

2014-09-29 20.06.50

No but seriously, pineapple is said to be an implantation aid and the rule of thumb after an IVF transfer is to cut a pineapple into 5 pieces and eat it (core included) for 5 days. Apparently the bromelain in pineapple increases cervical mucus which makes the uterus “stickier”. A large percentage of the bromelain in pineapple is found in the core so that’s what I’ll be eating.

I will also be:

  1. Keeping my feet warm because warm feet = warm uterus.
  2. Eating lots of protein in the form of nuts and avacados.
  3. Continuing to take my estrace pills and my progesterone suppositories, which are so special they deserve a separate blog post.
  4. RELAXING…

Relaxing. That word seems really unfamiliar but I am going to do my best. I took tomorrow off from work and I have a few Bravo shows and Hocus Pocus DVR’d!  Thank you to all of our friends and family for the phone calls, texts, emails and presents!!! You make this process so much more bearable.

XO

 

Goodbye Summer…hello FET!

Hi! I’ve missed you.

It’s been a while since I’ve blogged and to be honest the break from fertility brain has been nice. When you’re going through this process everything from what you eat to what you can wear to what bodily functions you’re having is ALL encompassing. Having some time to enjoy the summer with family friends, and let’s be honest some wine, was oh so nice. That being said one of these two things is happening tonight…

shots and wine

Yes folks that’s right.  Tonight we start our 4 week process of taking Lupron and various other meds for our frozen embryo transfer (FET)!!!

Here’s what we’ve been up to this past month in another addition of “life according to Instagram.”

Our family trip to Newport, RI where both of our families did a lobster bake the day we found out we have 4 embryos!!! 🙂

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An 18 mile bike ride around NYC.

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 The Intrepid.

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Short break and then we stopped by the building where our embryos are!

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Sushi at our favorite place!

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A trip to Maine

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and…Greenwich, CT for wine and Cards against Humanity.

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did I catch a niner in there?

PeeversNewYorkNumberNine-1

Do you believe in signs? I do.

  This is a picture of The Solow Building located at 9 west 57th Street in Manhattan. I usually pass this building in a cab on the way to my RE’s office as well as my acupuncturist office which are both located on 57th street. The other day I was heading to acupuncture and the traffic was horrendous so I hopped off the bus and started walking. Those of you who know NYC know sometimes walking is just faster. Along the way I passed 4 middle aged women trying to take a selfie in front of this 9. They were laughing and joking that they all couldn’t fit in the picture. Instead of just walking past I stopped and asked if they wanted me to take it and I was greeted with a roar of “YES’s”. I laughed along with them snapped a few pictures and kept on my way. It made me feel good to take the picture for them, to help make that memory. I’ve seen/walked past the 9 before and never thought twice about it. Later, I thought about the 9, wondered why they wanted to take that picture and why there was a huge 9 outside of a building but,  never looked it up.

We just got the call that 9 made it to biopsy!!! Is it a random coincidence? You decide, I already have.

Our RE isn’t a talker and their office isn’t the most informative so I only have a little info to share. He said that 9 were biopsied, 7 on day 5 and 2 on day 6. They are BC and BD grade however they use their own grading system for embryos so we don’t really know what that means. I mean the waiting for the call and then the lack on info we get from the call is enough to kill me BUT we got 9! And now we’re hoping for lots of normals

So now we wait… 7-10 days.

xo

Money Talks

Attachment-1 (2)

Everyone has their own IVF stories and struggles to share. I asked Mike to write the following (he is amazing and handles the insurance) after we received a few emails from couples who either are or may soon be undergoing PGD/PGS asking about our experience with PGD and insurance as well as the additional emotional and financial stress that it adds to an IVF cycle.


For now, I’ll try to elaborate on our experience regarding the added cost of PGD and how we figured out what it would be.  Please note, while we will be specific with regards to actual numbers, the name of our insurer and the PGD lab shall remain anonymous.

Firstly, IVF-ers should check this site out to see what your state’s insurance coverage is. We recognize how fortunate we are that we live in a state where the cost of IVF including medications is covered, and we sympathize with all those having to deal with the enormous financial burden with minimal or no reimbursement. You should note this is a realization we came to in the middle of our first cycle while seeing others go through the process and pay out of pocket. That being said, we did not realize how truly complex our case would become because PGD was added to the equation. Hopefully explaining our specific case will help others who are in the same boat.

Where to start? That question was really overwhelming and our RE’s office and insurance company were not really helpful in determining what we should do first. I mean NO HELP whatsoever.

The first obstacle was to determine whether or not PGD was covered at all. Though this may seem like a simple question, that could not be further from the truth. After speaking with various customer service representatives from our insurance provider over the course of a few weeks, explaining to each what exactly PGD is… let’s stop there for a second. PGD is so rare and complex that even some of the doctors and nurses at our RE’s office do not feel qualified to discuss it with us. So not only are we infertile but now no one will talk to us about our specific very rare problem. Anyway…after hours, literally hours on the phone it was finally determined that PGD is included in our plan. Terrific news right?!?! Nope… Prepare for a crash course on the true meaning of in-network versus out-of-network.

In-network

In-network is easy. If your RE is in-network, then your insurance company has already contracted a price for any given service from that provider, and they will in turn pay some percentage of that price. In our case, our insurer pays 100% for in-network services.

Out of network

Out of network becomes somewhat more confusing. Reimbursement for out of network service is usually less. In our case, the insurance company “reimburses at a rate of 80% minus our deductible ($500/year).” Okay, but 80% of what? 80% of the total cost of PGD? 80% of what they feel like paying? 80% of a chocolate chip cookie? Turns out this is a very important question.  Again, after hours on the phone, I was told what they will actually pay is 80% of the “usual and customary rate” that they pay for that given procedure. So for example, if you get an x-ray from an out of network provider that costs you $100, but your insurer’s usual and customary rate for x-rays is only $50, then you get reimbursed $40, not $80. And this is of course assuming you’ve already fulfilled your annual deductible.

Here is where it gets really confusing. Turns out that:

  1. there is only one IVF clinic in our area that is in network.
  2. they only use one specific lab for PGD.
  3. that lab is out of network AND furthermore does not accept insurance at all.

Each one gets better than the next, and by better I mean worse and more annoying.  After relaying this information back to our insurance company we were introduced to the concept of “in-for-out.”

In-for-out

This phrase is confusing in itself and figuring out what this actually meant took a few more hours on the phone. Basically, “if a procedure is deemed medically necessary, and there are no in-network providers available then they reimburse as if the provider was in-network.” Based on us being infertile and our both being carriers of CF, IVF with PGD was deemed medically necessary. So we applied for in-for-out and our case was accepted. But remember, this means that they will reimburse 100% of their “usual and customary rate.” Enter CPT codes.

Current Procedural Terminology (CPT) codes are numerical codes assigned to all medical, surgical, and diagnostic services and are used amongst other things to help regulate costs. For our PGD, there are three CPT codes involved:

CPT Code Amount We Paid   (before retrieval) Amount Reimbursed  (eventually)
Probe Creation (81403) $4000 $728.04
Chromosome Testing (81228) $2250 $1690.04
CF Mutation (81479) $3000 ?????
Total $9250 $2418.08+

 

The question marks are particularly curious. When they cut the first check (which as a comical aside was mistakenly mailed to our PGD lab instead of us) the reimbursement for that code was a whopping 4 cents. Pay $3000 get 4 cents back…makes sense. After pointing this out, they assured me this was a mistake, and that they would correct it after reviewing our case again. So after numerous additional phone calls, they still don’t have a number for that code, but they’re “working on it.”

We’re hoping for a least a nickel.

So ultimately, given the rarity and complexity of PGD, although it is covered by our insurer at an in-network rate, we had to front the full cost (with help from our family) of $9250, and have so far been reimbursed 26% of that cost. Oh…and that’s just for the first cycle…