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Wednesday, May 28, 2014

Comparing Clinics

After our last disastrous IVF cycle, I told myself and my husband that we were going to shop around for the right doctor for us if we were going to try any more procedures. I think it's smart to compare clinics and not just jump on the closest one, the cheapest one, the one you've heard good things about, or the one your doctor refers you to. A doctor works for you, you do not work for them, and especially in the infertility world where everything is paid out of pocket and up front-you should expect to have the best possible delivery of services from your doctor.

Over the past month, me, my husband, and my sister have been comparing clinics to figure out where we want to have our egg donor IVF cycle completed at. On May 14th we met with Dr. Awadalla at Institute for Reproductive Health and today we met with Dr. Hofmann at Bethesda Fertility Center. Well, today just me and my husband met with Dr. Hofmann because my niece's daycare is closed this week and we didn't want to torture her by asking her to sit through another long doctor's appointment. After meeting both doctors and their staff, there are pros and cons to both clinics, as there would be anywhere.

ACCESSIBILITY:

Institute for Reproductive Health was much harder to get to and to find when driving down the street it is located on.

Bethesda Fertility Center is all highway directions and was relatively easy to find. If my sister had to go to an appointment by herself, I would be comfortable knowing she wouldn't have to fight with hardly any traffic and would be able to have a stress free drive to the office.

OFFICE SPACE:

Institute for Reproductive Health is a beautiful, modern office with great views. Its also surrounded by many places to eat and shop.

Bethesda Fertility Center is an outdated clinic, probably the most outdated out of the 4 fertility clinics we have been to over the past year. Nothing modern about office decor at all.

FIRST IMPRESSION:

In early April when I scheduled my appointment at Institute for Reproductive Health, it took 2 days for the receptionist to call me back to schedule our appointment and I thought the receptionist was quite rude on the phone. During our check-in the receptionists did not say a word to us.

On the other hand, when I made my appointment with Bethesda Fertility Center, the receptionist was friendly and very prompt with returning phone calls and scheduling our appointment.

DOCTOR PERSONALITY:

Dr. Awadalla was confident in what he does, but arrogantly confident in my opinion. He instantly told me he didn't want to hear anything about Dr. Braverman "and his wild ideas" and didn't seem to care why I wanted the immunological testing completed. I felt like none of my concerns were heard or considered during the appointment and I left feeling like no one was on my side-not even my own husband because Dr. Awadalla had him convinced the Money Back Guarantee Package was our problem solver.

Dr. Hofmann right off the bat was engaging with us, listened to my concerns, understood my concerns, offered actual solutions to my concerns, and even talked to my husband about wines they like and where he should take me to lunch (even though we didn't have time for a sit down lunch today). He sat at a round table with us which to me seemed much more inviting and less like a meeting with a loan officer who was going to rob our bank account dry from fees. He understood why we wanted to get the testing with Dr. Braverman and said "sometimes you have to get you mind and your heart on the same page." He realized it was a peace of mind effort and supportive us with our decision. At the end our our consult he said "I'm going to have to meet that SEESTER of yours the next time you come." SEESTER...SEESTER. He even talks like me and my seester!

DOCTOR THOROUGHNESS:

Dr. Awadalla clearly did not read through my records that I sent him a month in advanced. He was rushed through our consult. He did do an ultrasound on me to make sure there was no fluid in my tubes which was a quick 2 minute scan. He also checked my sisters ovaries to see how her follicles look, but all he would tell us was "she has plenty." He did not appear concerned with how low my Progesterone was during our last IVF cycle, didn't do any blood work, and didn't discuss with us how the egg donor cycle works in making sure my body is ready to receive the embryo before transfer.

Dr. Hofmann, after introducing himself to us, said "you are quite the interesting lady." That told me right there that he had read through my medical records I had faxed to him prior to my appointment-and not to mention he was in Italy the entire month of May until yesterday. He went through my pregnancy history and IVF history with us. He discussed the different types of Progesterone supplements and explained how they work with the uterus and where they get metabolized at-he was agreeable to letting me do the suppositories and could not believe my Progesterone level was so low during my IVF cycle while using the shots after my retrieval. He ordered several blood tests and had my blood drawn right in his office-progesterone and estrogen levels, TSH and Prolactin levels, Vitamin D levels, and the STD & Hepatitis screening that is required every year. He did a complete physical exam, checking my lungs, my thyroid, my abdomen, and did an internal ultrasound to check my uterus and ovaries. He told me "you have a beautiful ovary!" and showed me all the resting follicles inside one of them and pointed out my uterus is retroverted (tilted backwards) which I've known from being pregnant 4 times. He told us he was going to do a Aquasonogram the next time we came back to make sure there was no scar tissue in my uterus from having 2 d&c's within the past 15 months because if there is scar tissue then it could prevent an embryo from implanting itself-no doctor has ever mentioned this to us before. He told us Alex would have to get an updated semen analysis completed and blood work the next time we come back also. And finally, he will be doing a test cycle on me this upcoming month to see how my body responds to the medication I would be on during our egg donor cycle so he knows if the medication is going to work for me or if he will need to make a different medication regimen for me. He wants to make sure my uterine lining is going to get thick enough for an embryo transfer to make sure my uterus will make a good home for the developing baby.

EGG DONOR NURSE COORDINATOR

The nurse at Institute for Reproductive Health was nice but I couldn't tell you her name. She met with us briefly to tell us the next steps for getting my sister medically cleared to become an egg donor.

The nurse at Bethesda Fertility Center, Patty, was so great. She was very thorough with explaining all the next steps we need to take from psychological testing, to the additional sonogram and semen analysis, to my sister's medical screening and physical exam. She even told us we needed to get a legal contract written up and signed in front of a lawyer for us to be able to move forward with the process, and said all clinics are supposed to make sure the there is a legal contract for an egg donor cycle to make sure the egg donor doesn't try to claim the embryos as hers or even the baby as her, and to make sure the recipient couple cannot try to get child support from the egg donor. Now...we would never ever do any of this to each other, but it makes sense and was not explained to us at Institute for Reproductive Health. The nurse explained the test cycle completely to me and said she would be calling tomorrow with my blood test results and instructions on when to start the test cycle. She explained that since my sister was on the depo birth control shot and just switched back to the birth control ring, she has to have three normal menstrual periods before we can do any hormone testing on her. The nurse was very personable and funny. I liked her alot.

FINANCIAL COORDINATOR:

We spent an extensive amount of time with the financial coordinator at Institute for Reproductive Health. She was very thorough in going over the costs associated with a single fresh cycle, a single frozen cycle, and the money back guarantee package. I liked her a lot-she was very friendly and patient.

We did not get to meet with a financial coordinator at Bethesda Fertility Center today. This would be my one disappointment, but it sounded like she would be verifying our insurance benefits and coverage prior to going over any fees with us to make sure she is delivering accurate information.

COST COMPARISONS:

The cost sheets for Institute for Reproductive Health are very clear to read and understand. One fresh donor egg cycle would cost $14,400 with the self-pay discount the clinic offers. This does not include medication. The Money Back Guarantee package is a good option since I'm worried about losing the baby during pregnancy and the package gives 6 changes of having a live birth or you get part of the money back (17,000). It would be a waste of money if we actually did have a live birth on the first or even second try. We would still have to pay an additional $2,300 to have my sister medically cleared and our psychological testing completed. Plus all medications would be additional also.

The cost sheets for Bethesda Fertility Center are very confusing to me. Just the cost for my sister's portion of the IVF cycle with her pre-screening says it would be close to 12 grand...which is double what it is at Institute for Reproductive Health. ICSI is anywhere from $300-$800 more than at IRH also. The embryo transfer costs $5170 and my recipient monitoring would be at least $400 and our psychological testing is $350 which is $100 more than IRH. It is very hard to understand what our exact overall cost would be for one cycle without having met with the financial coordinator yet but so far it seems one cycle would be $4,000-$5,000 more than it would be at IRH unless there is a self-pay discount which is not listed on the forms.

SUCCESS RATES:

In 2012 Institute for Reproductive Health did 60 fresh donor egg cycles with a live birth success rate of 53.5% and 28 frozen donor egg cycles with a success rate of 28.6%

In 2012 Bethesda Fertility Center did 24 fresh donor egg cycles with a live birth success rate of 70.8% and 36 frozen donor egg cycles with a success rate of 36.1%.

So while IRH seems to do more donor egg cycles, their success rate is much lower than Bethesda Fertility Center. Overall, IRH does about 600 more IVF cycles a year than Bethesda Fertility Center which is a considerable difference. I wonder if it is because IRH has several more doctors than Bethesda Fertility does or if word of mouth refers more people to IRH. Its hard telling.

OVERALL SATISFACTION:

Overall, we were more satisfied with Dr. Hofmann's approach and concern during our appointment. I love his thoroughness and feeling as if we aren't just going to get thrown into a cycle of medication that we don't know will work or not like it seems we would at Institute for Reproductive Health. However, the money factor is concerning but we don't exactly know the true cost of what it would be at Bethesda yet either. As of right now...we are leaning towards Dr. Hofmann as we have more confidence in him and his staff than we did in Dr. Awadalla. Both clinics provided a sedated egg retrieval which is a must no matter way. Now we just need to figure out all the little things but it seems as if we are going to be moving forward with Dr. Hoffman for the test cycle at least over the course of the test month.

Friday, May 23, 2014

No Price for Peace

As an update to my previous post, I am happy to say my husband and I decided we were going to do the immunological testing with Dr. Braverman. On Friday last week I spoke to the lab in Boston who processes the blood work and found out the blood work itself was $1,000 cheaper than we were originally told by Dr. Braverman's office. So that was a nice surprise. We talked about it over the weekend and my husband finally agreed to the testing, again. On Monday I notified the lab in Boston that we wanted to complete the testing and they sent the testing kit (free of charge) to the lab here in Ohio. It was over-nighted so on Tuesday me and my husband went to the lab at my OGBYN's office and got our blood drawn. Another nice surprise-the lab who drew our blood said they were not going to charge us any venipuncture fees and were drawing our blood at no cost as a "complimentary gesture." We were very happy with how this was all handled by both the Ohio lab and Boston lab. Our blood was over-nighted back to Boston and it is being processed now. 15 vials for me, 3 for my husband.

So now we wait, and I feel at peace with our decision. Someone told me last week that you cannot quantify peace. For me-I need these answers to be able to move forward with our baby quest and to accept that my four babies died and accept that our first IVF cycle failed. I don't think I have accepted any of this. If these tests give us no new answers-great! Then we know for sure I should have no problem carrying a baby with donor eggs from my sister. If these tests give us new answers-we will cross that bridge how we need to and I will be happy that I continued to follow my instincts.

We are going to go to New York to meet with Dr. Braverman to go over the results. However, we cannot plan our trip until my husband starts his new job on June 2nd. Thankfully, he was honest with his boss when he got hired about our infertility treatments so he was awarded 2 weeks of vacation for the remainder of the year even though they typically do not give our vacation until after the first year of employment. We intend on staying in New York 3 nights at the end of June or beginning of July. I will finally be able to cross visiting NYC off my bucket list:)

As you continue on whatever journey you are on, remember to always advocate for yourself and remember that you can't put a price tag on peace. As much as money drives the decisions we make, it is better to know you did everything you could do. Knowing you never gave up, will give you peace in the end.

Thursday, May 15, 2014

Battle in my Brain

If you have been reading you know that last week I wrote about a big decision we needed to make regarding the Immunological testing with Dr. Braverman in New York. Well over the weekend my husband and I spoke about it and he was in agreement with doing the testing to see if there is anything else contributing to my seemingly inability to carry a child besides my translocated chromosome. On Monday I called Dr. Braverman's office and spoke to Judy, the incredibly nice billing lady and gave her the okay to start the process with us. My credit card was charged Dr. Braverman's $3,000 fee right away. I got an email shortly after I hung up the phone with June from the medical assistant with the lab form I needed to complete, have my OBGYN sign, and fax to Reprosource, the lab that processes the blood work. On Tuesday my OBGYN signed the forms and faxed them like we needed. I was told to expect a call from Reprosource Friday or Monday to arrange the actual blood draw with the lab here in Ohio. So things were progressing seamlessly just how I like it.

Yesterday we met with Dr. Awadalla at Institute for Reproductive Health. It was me, my husband, my sister, and my niece. We took my sister so we could discuss doing an egg donor cycle using her eggs, and my niece had to come because she had no sitter for her. I had faxed every lab, every test, every report along with a written out medical history of our pregnancies to the doctor weeks ago, but it was apparent that he just started looking through them when we got to our appointment. I get it-I'm sure he's a busy man. When I explained to him that we were interested in doing an egg donor cycle with my sister because I have a translocated chromosome, have had a stillborn, have had three miscarriages with two confirmed as having Down Syndrome, and most recently had a failed IVF with PGD cycle-the doctor was instantly on board with the egg donor cycle. When I brought up that we were getting ready to do immunological testing with Dr. Braverman the doctor kinda lost it on us. He didn't want to talk about, said he wouldn't support it, and said it was completely unnecessary because we KNOW why I've lost our babies...the translocation OF COURSE. He asked me if my biggest fear was losing another baby-well absolutely-and offered to do the Egg Donor Money Back Guarantee Program with us which basically gives us 6 chances of having a living baby or we would get more than half our money back (I will explain more about this later). He did an ultrasound on me to check to see if there were fluid in my tubes because of my previous HSG results-no fluid seen. He also did an ultrasound on my sister to check her follicle count since she has been on birth control for four years-plenty of follicles. We met with the very nice billing lady to discuss the costs of one fresh cycle, one frozen cycle, and the money back guarantee program. We also met with the egg donor nurse coordinator to discuss the process of getting my sister medically cleared and synchronizing our cycles. By this time my niece was in the lobby with my sister throwing a fit so we had to wrap it up and get out of there. When we got to the car my niece was sure to tell me she was mad because we were taking too long! I'm in trouble if we end up with a child that has her personality!!

So from the standpoint of Dr. Awadalla-he is confident he will be able to get me pregnant on our first fresh donor cycle, confident I do no not need immunological testing or treatment, and confident I will be able to carry that baby to birth.

Since we left our appointment yesterday my mind has been going a million miles a minute. Me and my husband have been arguing about the immunological testing-he no longer wants to do it but I still do. I'm crunching numbers in my head, battling conflicting thoughts, and feeling extremely out of control with all of this.

Let me just share with you the conversations that I've been having with myself over the past 30 hours.

Conversation topic: Should we do the Immunological Testing

What if Dr. Awadalla is right? What if we don't need the testing? We would be wasting 5 grand. What if Dr. Braverman finds something in our blood work and pushes us to to treat the issue he finds but it really wouldn't affect a pregnancy? We would be wasting a whole lot more money that we really don't have. What if he does find something that could affect a pregnancy and Dr. Awadalla refuses to work with him to treat the issue? I can't have another miscarriage. I could kill someone if I had another miscarriage. What if we don't do the testing and there really is something else going on that could result in me losing another baby? If we don't do the testing and lose another baby I would be so angry that we didn't do the testing and treat the issue. I don't want to have any more regrets. I'm tired of having regrets. I'm tired of not following my instincts. I'm tired of doctors around here giving us the easy answer. Well, what if we did the testing, but waited to treat the issues? Maybe just having the testing done will help us make a better decision about what we need to do to have a healthy baby. Maybe we could do the testing, do a fresh donor cycle and even a frozen donor cycle, and if we don't get pregnant or lose another baby from these first two cycles then we go back to Dr. Braverman and start treating the issues. Can I handle even one more loss...maybe? I don't know. I'm so scared of going through that again. I don't know what to do. (Called Dr. Braverman's Office today.) At least we can get back our $3,000 we already paid if we don't get the testing done. At least if we did the testing and he didn't find any other reasons for our loses we would still get $2,000 back. So what would we do if he did find something? I'm pretty smart...I think I would be able to decide what really would affect a pregnancy and what wouldn't. Again, we don't HAVE to treat the issues if we decide we don't WANT to. He can't make us. I just need peace of mind...I need these tests done. I need to know if there is something else going on and don't want to wait for us to lose another baby to know. Plus we can make a vacation out of going to New York to see Dr. Braverman. We have our time share and 5 vacation certificates we have to use before the end of 2015. I really hope Alex just agrees with me. I don't like feeling like he's not on my side anymore:(

Conversation topic: Single Cycle vs Money Back Guarantee Program

Crunching the numbers-
To screen my sister we will have to pay $2,050. Our psychological testing will cost $250.
A single egg donor cycle will cost $13,300, plus $1,100 for ICSI
We can use our left over medication from our failed cycle for the most part...maybe have to spend $1000 on meds
If we have any left over embryo's to freeze it will cost $600 + $400 per year to store them.

So for one complete cycle with freezing, it would be $18,700
A frozen embryo transfer cycle will cost $3700 plus $300 for medication so $4,000
If the fresh cycle didn't work and we ended up doing a frozen cycle (if we even have any to freeze), we are looking at $22,700.

For the Donor Egg Money Back Guarantee Program we could get 3 fresh cycles AND 3 frozen cycles for $24,000. No extra fees for ICSI or embryo freezing and storing.
We would still have to pay $1800 to have my sister medically cleared, $250 for our psychological testing. $250 to "insure" my sister for each fresh IVF cycle she does. And $1,000 for medication the first fresh cycle, but $300 for meds every frozen cycle and $3000 for meds for every additional fresh cycle.

So if we HAD to use all three fresh and all three frozen cycles it would cost us $34,700 total for everything.

3 fresh cycles + 3 frozen cycles without meds, screening costs, and freezing costs is a $54,300 value. So $24,000 is a steal.

If we do not end up with a LIVING baby after 6 attempts, we get $17,000 back. We would only be out $17,700 which is LESS than the cost of one fresh cycle.

If we get pregnant the first fresh cycle and have a living baby as a result, and we did the money back guarantee program, we would get no money back and would have over paid $9,600 which we would never see again.

If we didn't get pregnant the first fresh cycle but got pregnant the first frozen cycle and have a living baby as a result, and we did the money back guarantee program, we would be out $5,900 which we would never see again.

The money back guarantee program is only cost effective if its going to take us more than one fresh and one frozen cycle to get pregnant and have a living baby.

Ensue Mind Racing: I bet my sister could do the STD screening through her OBGYN and her insurance would pay for it. That would lower the cost of the $1800 the clinic is asking from us for her medical screening. Her insurance is going to be changing next month, it's probably going to be a high deductible plan so it may not even benefit us to do it that way. I wonder what type of birth control pill the fertility doctor would want her on? Maybe I should call them and check since she has her gyno appointment next week. Do we do a single cycle and take a chance that it will work the first time? If it doesn't work and we have frozen embryos, it is still cheaper to do 1 fresh and 1 frozen cycle separately than to take the package. What if we don't have any frozen embryos...a second fresh cycle would cost another $14,400 so it would be cheaper to do the package. What if we do the package and we do have success the first cycle? Then we are out a lot of money. I honestly don't think it's going to work the first time...especially if we don't figure out why I haven't been able to carry my own babies. Can I really handle going through that many more cycles? We don't even know if my sister would be willing to do more than one cycle. It's not really fair to ask her to do more than one if the first one doesn't work. She has a life too...she's young, she works full time, she has a daughter. We can't expect that she's going to want to keep doing this for us, especially once she gets through the first cycle and sees how hard it with all the appointments and medications. She's already annoyed with me asking her to take a prenatal vitamin and upset that she has to change her birth control this month and can't take the depo shot anymore. There is no way she would be able to put up with this madness for possibly 2 more cycles over the course of 2 whole years. Well, if we did the package and didn't get pregnant or have a baby from the first fresh or first frozen cycle, they did say that at any time we could say we didn't want to do any more cycles and would still get the $17,000. In that case, if it didn't work and we stopped after the first fresh and first frozen cycle....we would only be paying $7000 instead of paying for the cycles individually which would cost $14,400 for a fresh cycle and $3,700 for a frozen. So really...that would be a steal too. It almost makes me not want it to work the first time because then we are out the money, but then again...i just want one thing to go right...I'm tired of going through all this. I want to feel success. I don't want to keep feeling failure and heartache. I don't want to go through another miscarriage. I don't want to have to even ASK my sister to consider a second cycle. This is driving me crazy.


This is honestly what I deal with. It makes me really feel for the Schizophrenic patients that I see at the hospital I work in. My own thoughts are overwhelming enough...I couldn't imagine here other voices in my head too. No wonder they want to kill themselves sometimes. This battle in my brain consumes me to the point that I cannot make a logical decision, I cannot make an emotional decision, I cannot make any decisions. My logical brain fights with my emotional brain and right now they are intertwined like a pretzel. This is the reality of someone going through fertility treatments and/or recurrent loss....our minds are always racing, thinking and worrying about what is the right choice and fearing for future failures and heartache. This is not easy. Whoever thought infertility was no big deal, I hope you think again.

We need to make a definite decision on the immunological testing, like by Monday at the latest. We have another consult with Dr. Hoffman at Bethesda Fertility in Cincinnati on May 28th. I am interested to meet with him and to see how I feel about him, his staff, his opinions, and the costs involved in their cycles. Once we meet with Dr. Hoffman we will need to decide which clinic we are going to go with-Institute for Reproductive Health or Bethesda Fertility. I need prayers for peace from anyone and everyone-peace in my heart, peace in my soul, and peace of mind. I'm going to try not to get ahead of myself on some of these things and try to give my sister some time to let all of the choices she has to make set in and not push her too hard to get started on the things I'd like her to have been doing like last month (the prenatal). I'm quite OCD so I hate when things our not in my control so I tend to be overwhelming and want stuff done right this second. Lord give me the ability to just take in one moment at a time please.

In better news-I finally heard back from Ohio Reproductive on the issues with our bill that I called and complained about. It sounds like our bill will be getting lowered from $415 to somewhere between $100-$200. Sometimes being proactive does pay off.

Bear with me as we continue to walk this journey we didn't ask to walk. I'm doing the best I can with what I've been given in this life.








Monday, May 12, 2014

I am a Mother, Not yet a Parent

For years I have felt like I have had to defend myself, that I am a Mother despite not having my children walk this Earth with me. Every Mother's Day felt like I was the one over-looked, because my children are not visible to others. I have literally felt invisible to my family and friends on the day that Mothers are to be celebrated and appreciated for what they have done for their children.

Many people do not know that Mother's Day was created by a woman to honor her own mother who had lost 7 babies. It was created to recognize the struggles that this woman went through to have her daughter and to acknowledge the emotional pain of being a mother to children who are carried in a woman's heart rather her arms. Corporate companies turned this day into a nationally recognized day for Mother's, but failed to keep the integrity of this day as it was intended to me. There became such a hype to celebrate Mother's who are able to raise their children, while forgetting about the thousands of women who are hurting because one or more of their children live in Heaven.

A friend of mine shared this powerful poem yesterday and I thought it was worthy of sharing.

Dear Mr. Hallmark,

I am writing to you from heaven,
and though it must appear

A rather strange idea,
I see everything from here.

I just popped in to visit,
your stores to find a card

A card of love for my mother,
as this day for her is hard.

There must be some mistake I thought,
every card you could imagine

Except I could not find a card,
from a child who lives in heaven.

She is still a mother too,
no matter where I reside

I had to leave, she understands,
but oh the tears she's cried.

I thought that if I wrote you,
that you would come to know

That though I live in heaven now,
I still love my mother so.

She talks with me, and dreams with me;
we still share laughter too,

Memories our way of speaking now,
would you see what you could do?

My mother carries me in her heart,
her tears she hides from sight.

She writes poems to honor me,
sometimes far into the night

She plants flowers in my garden,
there my living memory dwells

She writes to other grieving parents,
trying to ease their pain as well.

So you see Mr. Hallmark,
though I no longer live on earth

I must find a way,
to remind her of her wondrous worth

She needs to be honored,
and remembered too

Just as the children of earth will do.

Thank you Mr. Hallmark,
I know you'll do your best

I have done all I can do;
to you I'll leave the rest.

Find a way to tell her,
how much she means to me

Until I can do it for myself,
when she joins me in eternity.

Happy Mother's Day From Heaven



I have thought about sending a letter to Hallmark or big card maker companies myself, because I have been upset that there is a clear lack of acknowledgement about the loss of a baby or child. Just the other week I was looking at cards and saw in the Sympathy section cards that were labeled "Loss of Parent," "Loss of Grandparent," and even "Loss of Pet," but none for "Loss of Child." It made me feel discriminated again, in a way. It also made me sad that I cannot be blind to the fact that babies and children die all the time but angry that these big companies are still walking around blindly to this fact. It just would be nice if there were cards specific to the loss of a child, or like this poem above talks about-acknowledging the wonderful and beautiful mother's who do not have the privilege of spending Mother's Day with their deceased children but who continue to love them unconditionally and more abundantly every day just as they would if their children were here.

While I was dreading Mother's Day this year, knowing that I should be giving birth to our daughter, Audrey, the day before, and knowing I have three other angels that I cannot spend the day with, this Mother's Day was different for me. It still carried the same amount of sadness as the six Mother's Days before this one, but there was one thing that made a difference for me. On Saturday my amazing sister asked my husband to take me to the cemetery where our first daughter is buried and told him that she had something waiting out there for me. My husband didn't know what it was and wouldn't tell me what my sister was trying to coordinate with him. When we got to the cemetery there was a bouquet of flowers and a card waiting on me on Riley's tombstone.


The card reads:

Mom,

Be happy today, because you've made others happy so often. Be happy, because you're the kind of women people love and respect and because your family adores you. Be happy, because Mother's Day was meant for moms like you.

Whereever today takes you, Mom...hope it finds you happy and content in knowing how very much you're loved by your lucky, grateful family.

Happy Mother's Day
From All of Us

Love,
Your Angel Babies

My sister wrote the following message inside: I never want you to forget that Mother's Day is your special day as well. I'm sure it doesn't feel the same, or like it should, but you're one of the most special mommies out there! I know your precious babies are looking down on you every day, thinking Wow! I have the best mommy ever! I only hope that soon enough you will reach the light at the end of the tunnel. You're truly one of the strongest and determined woman I know. Happy Mother's Day! Love-Ashley

Needless to say, I cried when I read the card. Needless to say, I have the best sister I could ever ask for. I thank God for her every day and would be totally lost without her.

Another friend sent me a card, and to my surprise, a donation to our "Rainbow Baby Fund."





I even had several people send me messages saying they were thinking about me and wishing me a Happy Mother's Day. I really cannot thank you all enough for making this past weekend gentle on me. Knowing that I was thought about and recognized as a Mother was the greatest gift I could have been given.

This year I have been able to accept that I am a Mother, but not YET a Parent. It is a parent that I WANT to be, not a Mother-because I already am one. So when I hear people tell me I will make a wonderful Mother "one day," I will kindly remind them that I have been a wonderful Mother for 6 years, but I know I will be a wonderful Parent one day too.

Thursday, May 8, 2014

Big Decisions to Make

I submitted my New Patient Registration forms this week to Dr. Braverman's office in New York to get started on the immunology testing that we wanted to have done prior to another pregnancy or another IVF attempt. Today I spoke to Judy, the very nice billing specialist, the go over the fees for services before the doctor goes forward with contacting my OBGYN and getting these labs ordered. Brace yourself.

It will cost us $3,000 up front in physician fees, and another $1-2,000 up front in lab fees. The $3,000 covers Dr. Braverman's time and expertise in consulting with our OBGYN on the tests he would like ordered, the analysis of the results, development of a treatment protocol, and coordination of caring during a natural or IVF cycle with our OB or fertility doctor in Ohio. It will also include a "courtesy" office visit with a color flow Doppler exam of my uterus and ovaries. The Lab fees only cover the initial testing, so any follow up labs we need completed during our cycle will be charged separately.

If/When we do get pregnant, we will be charged an addition $3,000 for the "first and second trimester monitoring." This includes Dr. Braverman's time and expertise of analyzing any blood tests we have completed and response to the treatment he places me on. It also includes his communication with our OB or fertility doctor to inform them of the test results and any changes he wants to make to my treatment. The $3,000 does cover up to three pregnancies until I get past the 12 week mark. This means that if I have a miscarriage before 12 weeks during the first or second pregnancy, I would not have to mpay any more money for him to monitor a third pregnancy.

So we know for sure this would cost us $7-8,000 just for initial testing and monitoring. We do not know how much more we would end up needing to pay along the way for all the additional testing throughout my cycle or pregnancy. And we do not know how much the medication or treatment would cost us either.

Deep breaths.

This is a huge decision we need to make. I know I do not want to attempt another pregnancy or IVF without the testing to at least see if there is any other cause to my miscarriages. And in my opinion, the results that he finds will guide our next decision, rather it be natural pregnancy with the immunological treatment, IVF with donor eggs from my sister with or without immunological treatment, or adoption. If we choose not to undergo this testing, I will not agree to attempting another pregnancy and we might just be in limbo until my husband gets on board with adoption. This isn't to be a mean and controlling wife...but to protect myself from the insanity I feel every time we lose a baby that we desperately wanted.

Thursday, May 1, 2014

Becoming Unstuck

This week has been one of the hardest for me in awhile. I have felt emotionally stuck. I have felt stuck on our journey to become parents. An emotional rollercoaster does not even describe it. Ever since Thursday I have found myself crying every time I am alone, and even sometimes trying to hide my tears from my coworker I share an office with. I have had thoughts flooding my mind...negative thoughts, harmful thoughts, but honest thoughts.

I've been angry at this journey and the affects it has had on my life. I've been angry that I have 4 angels and not 4 living children like I had wanted and planned to have. I've been angry that Mother's Day is coming up and I will spend it yet again celebrating everyone else but myself. I've been angry that my most recent due date is approaching and I will not be giving birth to our daughter Audrey. I've been angry that we are not currently pregnant from our IVF attempt. I've been angry that I have had to endure so much emotional pain along this journey. I've been angry that we bought a house that needs so much work done to it. I've been angry that my husband doesn't see how completely exhausted I've been with this entire process. I've been angry that my husband won't consider adoption unless we go through another failed IVF cycle. I've been angry that I haven't just been able to have a baby on our own, and angry that we won't be using my own eggs for another IVF cycle because of our poor results from the last cycle. I've been angry that even if we get pregnant and have a baby in our next IVF attempt-the baby will be 100% my husbands but not 100% mine in the sense that the other half that made the baby was my sister. I've been angry that we could spend another $15,000 and not become pregnant at all. I've been angry that we could become pregnant and still lose a healthy baby because nothing is ever guaranteed.

It has felt like all this anger has attacked me at one time and has sent me into a
downward spiral of depression.

I have been anxious about my sister's chromosome testing results. I have been anxious about meeting a new OBGYN and fearful she would not agree with ordering any more tests for us. I have been anxious my period being late and the possibility of having ovarian cysts when I've never had ovarian cysts or late periods before our IVF cycle.

I thought things started looking up on Saturday night when I finally started my period on day 39. I felt good on Sunday afternoon when I met with a local couple to give them information on the support group that I facilitate and talked to them for 2 hours like we had known each other for years. I felt like things were going to be okay for us. I was looking forward to meeting with the OBGYN on Monday.

Monday's appointment didn't go as plan and I think it was the straw that broke the camel's back. I drove an hour to see my new doctor and when I got to my appointment the receptionist informed me the doctor went home sick and I could reschedule or see the nurse practitioner. I opted to stay to see the nurse practitioner, since I had already made the trip, but when she came into my room and asked why I was there and said "you don't just need an annual exam?", huffed at me, and then told me see read my history and it's too complicated for her so I should reschedule to see the doctor-I was more than just annoyed. Especially when I had to cancel a training that I was scheduled to go to on Wednesday to be able to see the OBGYN before my appointment with the fertility clinic on May 14th because there were no other available dates and times. Then to top off my first impression of this office, I asked if I was going to get billed for my appointment and was informed yes I would because the Nurse Practitioner wrote a note stating she had a consult with me. I informed them telling me she read my history, without discussing my history with me, and then telling me I needed to reschedule was NOT a consult and I will not be paying them for only taking my weight. When I left the office I was hotter than a jalapeno. I felt like nothing has gone right in the past and this just set the tone that nothing is going to go right in the future either.

I met with Alex for lunch on Monday to make the early trip to Dayton worthwhile at least. During lunch I brought up to him how I've been having a difficult time emotionally recently and how 60% of me wants to focus on getting our house back together and then apply for adoption next year because I am just getting so sick of this rollercoaster ride, all the twists and turns, the upside down loops, and the abrupt endings just when we are starting to relax and enjoy the ride. I told him that other 40% of me doesn't want to surrender my dream of giving birth but that 40% is still filled with so much anxiety that it makes me nauseous. He informed me that he didn't agree with me and that he believes we haven't "exhausted all our options yet" for us to jump to adoption. He told me he would never get any work done if he thought about the things I do, the way I do, and as often as I do. He said he wanted to wait to see what all the doctors have to say over the next month and he didn't want to discuss it any further. I haven't cried so much in months...it just felt like he wasn't listening to me, that he didn't care that I felt like I couldn't handle any more uncertainties and that I didn't want to keep putting myself through all these appointments and procedures anymore. Then as I'm sitting in my car bawling my eyes out a song came on the radio that was speaking to me plain as day: https://www.youtube.com/watch?v=emgv-VRtMEU.

In some ways it made me all the more angry because I feel like we've been fighting a battle that I don't know if we are supposed to be fighting, and I just wish there was a way to know what our future is supposed to look like, and because there isn't a way-we may continue to add to our hurt with every option that we try that isn't in the plans for us.

On Tuesday I continued to feel anxious, depressed, and angry. I was worried about my doctor's appointment on Wednesday since my first impression of the practice was not a good one. I was worried about my sister's chromosome analysis knowing we should be getting the results any day now. And then me and my husband got into another disagreement about how we are going to afford another IVF cycle and possibly then adoption if the IVF cycle fails to work for us again. I probably cried more on Tuesday than I did on Monday.

Wednesday finally came and thankfully my trip to the doctor was worth it this time. I met with Dr. Sharma, who apparently thought I was going to be a bitch because she made a comment that "you weren't as hard as I thought you were going to be." She either thought I was going to be hard on her based on her staff's opinion of how upset I was with her office on Monday or because of the amount of medical records I had copied and organized in sections for her to review between Monday and Wednesday. While I do think she agrees that the translocated chromosome is our primary cause of miscarriage-she was at least willing to work with Dr. Braverman in New York to order the immunological testing to be sure there is nothing more going on before we spend another 15 grand on another cycle with or without my own eggs. She also prescribed me a prenatal vitamin specificly for my MTHFR gene mutation. Dr. Sharma gave me a fourth explanation of what COULD HAVE caused Riley's death-she said due to my amniotic fluid being so low when I went to the hospital and was told her heard had stopped beating, I could have either been leaking fluid or there could have been a lack of blood supply coming from the placenta causing her to use all the blood she was getting to fuel her brain rather than fuel her bladder and she could have stopped peeing causing the low amniotic fluid. I honestly had no clue that amniotic fluid was fetal urine. I do now! So because of Riley being stillborn and not having any signs of Down Syndrome or Trisomy 13 from ultrasound, Dr. Sharma said she would monitor me very closely throughout my pregnancy, doing cervical checks often and starting me on weekly progesterone shots at week 17 to prevent preterm labor. She agrees that using donor eggs from my sister would be the best option for us to prevent another miscarriage due to chromosome issues, as long as my sister does not have the translocated chromosome. Everything else that I've done in the past and plan to do during a future pregnancy she agrees with-the Synthroid for my thyroid, daily Asprin prior to conception and during pregnancy, and daily Lovenox or Heprin shots during pregnancy. I also asked her about Ovarian cysts due to my cycle starting so late this month and discussed my suspician of Endometriosis. She said she wanted to wait to see if my next cycle is on time or late, and if it is late again she would look into the Ovarian Cysts. As for the Endometriosis, she did not think it was necessary to do a laproscopy and go digging around for an issue that really isn't an issue that wouldn't affect the success rate of another IVF tranfer...which is true. So all in all-I actually liked Dr. Sharma and really liked that she even teared up when talking with me about our history of recurrent loss. It made me feel like she cared about me even though she just met me.

My appointment with Dr. Sharma made me feel like I was becoming unstuck. It made me feel like we had a better plan for our future. Then today me and my sister got the call that she DOES NOT have a translocated chromosome....meaning we can move forward with a donor egg IVF cycle! While I am still very sad that we won't be using my own eggs...I am happy to know that there is still an option that will allow me to carry and give birth to our child. Now we just wait for Dr. Braverman to respond to my email and send the information about the needed bloodwork to Dr. Sharma before I can move forward with getting the immunological testing. We still plan to meet with Dr. Awadalla at Institute for Reproductive Health on May 14th and Dr. Hoffman at Bethesda Fertility on May 28th to compare both doctors and clinics so we can decide which clinic we are going to go with.

As we progress forward on our Baby Quest I will continue to update. The good news is I haven't cried since Wednesday morning on my way to my doctor's appointment. The bad news is I know there will days inbetween now and our next step where I will have breakdown after breakdown. That's just how the journey goes when you are dealing with infertility and recurrent loss-its a cycle of hope and hurt that continuously weaves in and out of your life. I got my Origami Owl necklace today and it is a perfect representation of this journey-one locket representing my four angels and the love I have for them, and the second locket representing my hope and faith in God to bless us with a Rainbow Baby, along with a tag which states "Find Joy in the Journey." While some days are incredibly hard to get through and I am suprised at myself for making it through them...other days I am reminded that I am strong and beautiful and will get through this. I find joy in sharing my journey with others because I know many can relate to these same emotions and feel either understood or empowered by our story.