My Journey

Robert Burns said,

The best laid schemes of mice and men often go awry.

That’s the lesson of infertility: expectations and control are a fool’s illusion. We grow up–little girls with baby dolls swaddled, diapered, lovingly fed and toddled about–with the brave assumption that our anatomy will function when we’re practically, emotionally, financially ready.  And for most who leap off that cliff into TTC and parenthood, this is true.  But for an unfortunate fraction of the whole (me), there is the shattering, incremental recognition that motherhood will not unfold as it was supposed to.  First we grieve the fantasy that our children will arrive as the romantic blessing of an act of love, lace, flushed skin, passion; that, instead, we will need help from doctors in white coats, injections, and cold ultrasound probes.  We adapt, and sexuality becomes strangely disjointed from procreation.  Then, for a smaller fraction, comes the soul-devouring battle of repeat IVF failure, laden with exhaustive research, appointment-juggling, gambling of large sums of money Vegas-style on shaky odds, therapy to cope, pressure to “just relax,” meditation, acupuncture, herbs, supplements, yoga and the insane gamut of efforts, turning ourselves inside out to try and influence our fate.  And as cycle after cycle inexplicably fails to produce that ever elusive baby–as Sisyphus watches the boulder roll down the hill once more, exhausted, condemned–we again ratchet back our expectations.  For most of us, there is profound loss peppered throughout.  In my case that entails 2 surgeries, a D&C, 4 chemical pregnancies, 2 ectopic pregnancies, a ruptured fallopian tube, a second trimester loss, atrophied and damaged relationships with friends and family, a marriage that strained at times to withstand serial trauma, and six years carrying on best as possible beneath this sinister storm cloud.

My task these days is to make sense of my world again after this most recent and devastating loss; to reconcile an insatiable longing for a family of my own with the relentless and randomly cruel twists of fate that keep knocking us back down. We banked cycles at CCRM and RMA-NJ. After struggling with repeat fresh IVF failure for years, we were shocked to learn that we actually produced chromosomally normal blastocysts, and our first eSET/FET was successful. I carried without incident until we learned at 5 months pregnant that our baby had a lethal congenital abnormality. After two more fresh cycles and attempts at FET, we are grieving parents who are also newly pregnant with two precious beans and two more in the freezer. We are trying to navigate the relief/thrill/anxiety of pregnancy after infertility and loss one day at a time.


The Practical Stuff
(Get your reading glasses and maybe a cup of tea – it’s a long story)

Dx: Premature ovarian aging and tubal issues
AMH: 0.4-0.95
AFC: 6-16
Day 3 FSH: consistently around 7 or 8 until October 2014, when it spiked to 12
Day 3 E2: Ranges between 30-70

TTC for one year (just turned 30) beginning with our honeymoon July/August 2009: 2 spontaneous pregnancies, one probably ectopic and self-aborted, the other a biochemical

Initial work-up at Reproductive Specialists of New York: Dx unexplained infertility

3 IUI cycles with Clomid, good response, 2 BFN and one chemical pregnancy

IVF #1: 31 years old, bcp and antagonist protocol, ICSI at Reproductive Specialists of New York
* 12 eggs, 9 mature, 7 embryos, 2 early blasts transferred, nothing to freeze, BFN

May 2011: Consultation with Dr. Mukherjee at RMA New York

1 IUI cycle with Letrozole, poor response, BFN

IVF #2 (part 1): 32 years old, long Lupron protocol at RMA New York, poor response due to oversuppression, cycle converted to IUI, BFN

IVF #2 (part 2): 32 years old, no suppression, antagonist protocol with Letrozole, ICSI and assisted hatching at RMA NY
* 15 eggs, 11 embryos, 2 8-cell embryos transferred on day 3, nothing to freeze, BFN

LAP: scarred right tube repaired, resulted in ectopic pregnancy that ruptured the tube 2 months later from natural cycle

April 2012: Consultation with Dr. Davis at Cornell, Dx borderline diminished ovarian reserve and fragile eggs

Immune Consultation and Testing: MTHFR, Factor 13, elevated TH1 cytokines and natural killer cells

IVF #3: 33 years old, estrogen priming, ICSI, co-culture and antagonist protocol, Metanx, prednisone, Lovenox at Cornell with immunological monitoring through Dr. Kwak-Kim at Rosalind Franklin
* 12 eggs, 9 mature, 7 embryos, 2 8-cell and one 10-cell embryo transferred on day 3, nothing to freeze, beta initially negative but late implanting pregnancy discovered a week later, not viable

2 IUI cycles on Clomid + injectables, just to kill time before diving into another IVF, BFN

IVF #4: 33 years old, estrogen priming, ICSI, co-culture antagonist protocol with luteal estrogen supplementation, Metanx, Lovenox at Cornell with immunological monitoring through Dr. Kwak-Kim at Rosalind Franklin
* 16 eggs, 10 mature, 6 embryos, 2 7-cell and one 5-cell embryo transferred on day 3, nothing to freeze, BFN

March/ April 2013: Consults with Dr. Hesla at Oregon Reproductive Medicine, Dr. Schoolcraft at CCRM, as well as a follow-up WTF with Dr. Davis; they all suggest MDL flare protocol in varying applications

Spontaneous pregnancy, not viable, resolved via D&C (probably) after concerns it was ectopic

IVF #5, 6 & 7: 34 years old, estrogen priming with microdose Lupron flare, Saizen (HGH) and Dexamethazone at CCRM, ICSI with aspirated sperm, assisted hatching and CCS embryo testing, planned FET if embryos survive
* Round 1 yielded 10 eggs, 8 mature, 7 embryos frozen @ 2PN
* Round 2 yielded 5 eggs (blah), 4 mature, 3 more embryos frozen @ 2PN
* Round 3 (change in protocol to testosterone + estrogen priming, Clomid, high stims, HGH, antagonist, double Lupron trigger) yielded 6 eggs, 5, mature, 2 fertilized…the crappy new normal.
* 6 blastocysts out of 12 embryos survived to CCS biopsy: 3ab, 3ab, 5ba, 3bb, 6bb, and a stage 2/3
* 3 out of 6 blastocysts tested as eupoid: 3ab, 5ba, stage 2/3
Note: For those who are curious, below is a copy of CCRM’s protocol 5, which is the most aggressive one in their repertoire. My first two rounds with them, I did protocol 6, which can be found under the post “Practicalities.”

calendar-edit_1

January 2014: E-tegrity test comes back “in phase” with the protein present

February/March 2014: Regroup with Spock and press him for some medical insight as to why I have 4 previous IVF failures. If I made these normal blasts at 34, can’t we assume I made a few at 31, 32, and 33 as well? He impatiently tells me he would understand if I wanted to use a gestational carrier and cuts our $165 conversation short with that recommendation. B and I start to consider doing a donor egg or donor embryo cycle first. We have consults, transfer records, schedule testing and cycles, but each time I commit I have an emotional meltdown and lose entire days to crying, so we scrap that.

April 2014: Consult with George Kofinas to resume immunology treatment after testing with Kwak-Kim (and to avoid going back to Chicago) and he recommends the traditional voodoo–steroids, blood thinners, intralipids.

May 2014: Consult with Pulling Down the Moon for a nutritional plan because all the fads (supplements, elimination diets, anti-inflammatory blah blah blah) is totally overwhelming for a girl who is trying to do everything to avoid feelings of self-blame and regret. Nicole the Nutritionist suggests working more carbohydrates into my diet for balance, increasing potassium and magnesium, and lowering inflammation by avoiding what are apparently FODMAPS foods.

June 2014: Consult with Richard Scott at RMA-NJ–enlightening–and arrive at a plan to transfer my embryos

IVF #8 & 9: 35 years old, birth control suppression and microdose Lupron flare protocol, Saizen and Dexamethazone at RMA-NJ, ICSI with aspirated sperm, assisted hatching and CCS embryo testing, planned FET if embryos survive.
* Round 1 yielded 5 eggs, all mature, 4 fertilized, 2 day-6 blastocysts graded 5bc and 4bc, both genetically normal
* Round 2 yielded 9 eggs, 5 mature, 5 fertilized with fresh sperm because the aspirated sample didn’t thaw well – one embryo arrested before day 5, and the other 4 embryos arrested on day 6 at the morula stage.

October 2014: Get scratch biopsy. Begin a gluten-free, dairy-free, anti-inflammatory diet with no alcohol, processed sugar/starch, or hydrogenated oils. Struggle with caffeine reduction in hopes of eventually turning 2 cups of coffee a day into green tea. Eat lots of wild salmon, avocado, grass-fed beef, lemon water, olive oil, almonds, and kale.
Supplements: 1000 iu of natural vitamin E and baby aspirin (blood thinners), 2000 iu vitamin D3, 3000 iu high EPA-DHA fish oil (blood thinner and anti-inflammatory omega 3s), probiotic, Folgard (for MTHFR), prenatal vitamin

November 2014: See an allergist for testing. The entire food panel comes back clear. He says, “Stop worrying about your diet,” so I do. Continue limiting sugar, processed starch, and alcohol to special occasions. Focus efforts on eating well and reducing stress! Tolerate the three-day headache and kick caffeine entirely.

FET #1: day 4 start of 2mg Estrace twice daily and increased to three times daily on CD14, .25 mg Dexamethasone
11/8/14- e2 185, triple layered lining 10mm
11/15- e2 254, triple layered lining 9mm
11/21 Start 1ml progesterone in oil at night, Medrol and doxycycline for 7 days (continue all other meds)
11/23- p4 29, 11mm “type 3 lining”
11/25- Metrogel vaginal antibiotic (night before transfer)
11/26- eSET of a hatching blastocyst, special progesterone suppository compounded by RMA-NJ at 11am, 3 hours before transfer. Laser acupuncture before and after transfer. Long drive home in snow and traffic followed by bed rest.
11/27- Happy Thanksgiving! Bed rest? Hmmm, definitely not. We’re hosting, and mostly I’m trying not to lift heavy things or push myself too hard. Last day of doxy and Medrol
11/28- e2 is 184; p4 is 14.
12/5- BFP! Beta is 72.
12/7- Beta is 143.
12/13- first u/s @ 5w2d
Gestational sac measuring 4.4mm
Beta is 3152; p4 is 28.
12/19- second u/s @ 6w0d
Yolk sac and fetal pole visible with CRL measuring on schedule to the day; fetal heartbeat seen but too early to measure.
Beta is 14,758; p4 is 34.
12/22- After almost a week of light (brownish) spotting, I have a terrifying bout of bleeding bright red syrupy blood pouring out of me, and I’m sure that I’ve lost the baby, but u/s shows everything intact and on schedule. Crazy. How is that even possible? Diagnosed probably subchorionic hematoma and advised to “rest.”
12/26- At 7w0d, Dakota measures 6w4d, and everyone reassures me that this is no big deal. We hear the heartbeat and are awestruck; it is 113bpm, and that seems fine until I consult Dr. Google. Beta is 46,058.
1/3- At 8w1d, Dakota measures exactly on schedule with a vigorous heartbeat of 157bpm (phew!) and multiple unresolved hematomas as I head into the 3rd week of brown spotting with 3 heavy, red bleeds under my proverbial belt. Beta is…high…around 75,000. I graduate from my fertility clinic, and the process of weaning off progesterone supplementation begins.
3/24- At 19w4d, there is a preliminary diagnosis of a dangerous birth defect, the impact of which ranges from major surgery at birth plus several weeks treatment in a level IV NICU out of town to fetal or infant death. Fatality rates for this are high.
3/30- A target scan at the local MFM reveals that Dakota’s diagnosis falls into the ‘moderate’ range, which would mean a higher chance of survival, and despite an infancy and even early childhood that is likely to be medically complicated, he has a good chance of leading a normal life in the long-run. We start arming up for the best treatment, arranging consults and testing at CHOP and Boston Children’s.
4/8- Our full work-up at CHOP reveals that the (incompetent) MFM here at home misinterpreted his scan, missing many additional complications. With this, Dakota’s chances of survival plummet along with his shot at a normal life in the best case scenario.
4/17/15- We lose our boy at 23 weeks. Brokenhearted, we try to start picking up the pieces of our lives again.

July 2015: Hysteroscopy to look for uterine scarring after jumping through hoops to get my period again; minor clean-up of two small adhesions

August 2015: Failed attempt at medicated FET, ovulated through the meds; canceled

FET #2: Lupron, Estrace, PIO,plus Medrol and doxy
9/14/15: DET transfer of a day-5 3ab and a day-6 2/3 from CCRM, both CCS-screened and euploid
9/23: another devastating BFN

October 2015: WTF appointment with Richard Scott, who recommends ERA biopsy to confirm window of endometrial receptivity. I initially decide against this since I have already successfully attained and maintained a pregnancy on a day-5 transfer, but…

November 2015: Attempt to do an FET of the last 2 embryos because I need this to be over, but lining doesn’t develop well. (This is another new first, yippee!) I decide to have the ERA biopsy done in order for the whole month of monitoring and drugs to not be a complete waste. It comes back wonky: non-receptive/pre-receptive. I have to make plans to retest.

December 2015: I need a vacation! We somewhere along the way decide to try donor eggs in hopes that we might have better results than with my own eggs since our coping reserves are spent after The Loss following by The Fail. I initiate a cycle with Reprofit in the Czech Republic.

January 2016: ERA biopsy is performed after an extra 36 hours of PIO and comes back receptive. The reality of using DE starts to send me over the cliff. The Husband and I start fighting like cats and dogs. In the middle of the madness, I decide to do another IVF cycle because it’s the sort of thing crazy people do. Meanwhile, my husband flies to the Czech Republic alone to contribute sperm to the donor cycle we’re locked into.

February 2016: Both PGS reports (DE and OE) coincidentally come in within hours of each other on the same day. All of my donor’s embryos are abnormal. My one blast from OEIVF #10 is normal. My grip on sanity is tenuous at best.

February/March 2016: A routine updated hysteroscopy reveals that my uterine scarring returned with a vengeance on the left side and may have influenced the failed September transfer.

April-May 2016: I have a more involved hysteroscopy with RMA-NJ’s head of surgery, who is absolutely lovely and wonderful. He cleans me up, and after 3 weeks of hormone therapy to rebuild the lining over the areas where adhesions were trimmed away, a saline sono shows nice clean lines and a scar-free uterus.

June 2016: Another fresh cycle, another normal blast. Every blast I have made at RMA-NJ has been normal. Now we have four, two for a hail Mary FET, and two for the possibility of using a GC if this mysteriously fails AGAIN. (Shoot me!)

FET #3
7/4: Day 3 start on vaginal Estrace and Levaquin (prophylactic in case of pesky infection from all that uterine tinkering). I also take baby aspirin, 800iu of vitamin E, 2000iu of fish oil, 3 capsules of VSL#3 probiotic and administer vaginal antibiotic and special progesterone suppository night before and morning before transfer, respectively.
7/8: The local clinic sends the wrong test results to RMANJ, saying that my lining is 10 and my estradiol is 2000 on 4mg of Estrace. (Fucking idiots, it’s any wonder why I’m going “alllll the way to New Jersey,” as they constantly need to mention at my ultraounds). At the next appointment (different local clinic) my blood levels are more like 400 and my lining is at 7mm.
7/21: Lining measuring at 10mm, get the go-ahead to trigger
7/25: Go back to shitty local clinic because I am taking a class, and they are the only ones who open early enough for me to get there on time. The nurse practitioner measures my lining at 6mm. I freak out because transfer is scheduled for tomorrow and drive to New Jersey that afternoon to be seen by competent people, and the lining measure between 8mm and 10mm.
7/26: We transfer two euploid blasts, one from August 2014 and another from June of this year. This is a day-6.5 transfer instead of a day-5 transfer, based on the results of the ERA.
8/4: After losing my shit all day under the strain of terrible waiting, beta comes in at 214. I literally sob on the phone to the nurse and apologize unintelligibly through gasps of shock and relief.
8/15: First u/s shows one gestational sac and yolk sac and another dark bubble that may or may not be a baby.
8/20: Gushing, red bleed with huge, terrifying clot in the toilet, all managed while visiting friends at their parents’ house on the shore, which is floor-to-ceiling white and cream-carpeted. When we go to RMANJ the next day, we see two blinking heartbeats.
9/6: First OB appointment, two babies measuring well
9/27: NT scan, measuring 1mm and 1.3mm, both in normal range. The babies have faces and are moving like crazy.

19 thoughts on “My Journey

    • Thank you! I’ll be wishing you better luck in your journey toward the right donor! I’m so sorry about your sister…what a double whammy.

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  1. A, I almost wanted to plagiarize your writing on my blog…what a reflection to my mind & heart… We are looking at our 9th cycle (1st cycle @CCRM, 3 cycle in NYC..etc) this Feb, as I’m trying to remain hopeful, our history really doesn’t give us any upper hand in this game. I wish you the best with California Conception!

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    • Thank you, and I’m so sorry you can identity with this…since it’s such a dark space to inhabit. I’m hoping to side-step the CC plan, hoping, you know, that our hail Mary @ CCRM turns into a person…? I wish you the best odds against your history. I can tell you that after last night’s news, my cycles there look very different from anywhere else even though I’m older now. Rooting for you!

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  2. Pingback: Hello ICLW | The Empress and the Fool

  3. Hi there… just stumbled upon your blog yesterday. We are kinda on a similar journey… I also just finished my second embryo banking cycle @CCRM and I’m waiting to know how many blasts we made and then it’s a long wait onwards to CCS results. It’s all terribly nerve-wracking! I wish you all the luck and hope things turn out brilliantly for you!

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    • Thanks! After today’s report, I’m a CCRM believer. Let’s hope the grounds for optimism last through the rest of the pass/fail checkpoints. Good luck with your cycle!

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  4. Dear A,
    I found your blog few weeks ago and I would like to thank you so much for sharing this part of your life.
    I live in Czech republic and I went through 10 IVFs so far with no success at all. I was looking for a blog about infertility in Czech language but there is none. So I have tried blogs in English and I found yours. It helped me so much to read about everything you went through.
    There is no way how I can express how much I appreciate your blog. For those of us, who do not share any information about our infertility, it is so good to know that we are not the only ones who have to fight with infertility.
    Im very sorry about your lost. I have lost my baby in February this year and it was unbelievably difficult for me (and it still is). It was first time after all those years of trying when I actually got pregnant. I still do not understand why these things happens, why anyone lost her baby. But Im sure that one day both of us – you and me – will be moms.
    Please, keep blogging! You are a great help – even for people who live in different continent you do.

    P.S. Sorry for my English, Im not a native speaker so it is difficult for me to express my thoughts properly.

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    • I’m so terribly sorry for your loss, sorry with a deep knowing that comes from experience. I can take some comfort in the idea that writing about my troubles makes others feel less alone; I’m glad I could offer you that. I am hopeful for myself and for you. When times are darkest, I think of Anne Frank and her chestnut tree: if she could find beauty and joy in such a small thing during such a dark and frightening time, so can I…and so can you. Stay strong and keep hope, sister-friend ((hugs))

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  5. I stumbled in your blog while researching CCRMs testosterone priming protocol and I am glad that I did. I am 38, DOR and was told to move on to donor eggs. First fresh transfer at CCRM resulted in miscarriage and now I am sitting in the Denver airport returning from my third cycle, second FB cycle. The words you write eloquently convey the emotion that I simply cannot put into words, but are such a huge part of me. You are truly gifted and I am sorry you are on this particular journey, especially the loss of your last. I ached deeply for you. You have four frosties, keep pushing, keep pushing.

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    • I’m terribly sorry you can identify with what I’ve written, but it’s gratifying if my words have brought comfort or made anyone feel less alone. I hope you will find your resolution without more suffering, xo

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  6. Hi – I didn’t know where to post this – so please feel free not to post it – just wanted to communicate with you after your Eeyore post.
    Today I am Eeyore too. Failed FET with a PGD tested hatching normal. Both other FETs took – but both pregnancies not viable (6 weeks, then 13 weeks). 5 ivf’s later. no embryos left. 35 years old, running out of hope/direction. So I guess I’m commiserating (although I cannot begin to comprehend a second trimester loss and all the multiple heartaches before and after – I would not be that glib).
    Perhaps I am off-loading (sorry).
    Hope you are finding your way out of the depths of despair. Maybe WS said it best, “Giddy Fortune’s furious fickle wheel” and “when in disgrace with fortune and men’s eyes, I all alone beweep my outcast state”.

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  7. Oh my, I am at a complete loss for words. Your story shares a lot of similarities with my own. Multiple IVF/IUI cycles, donor eggs, Dr. Kwak-Kim, RMANJ, CHOP, complicated & high-risk pregnancy (which started around the same time as yours), stillbirth….

    I am *so* sorry for everything you have been through. My heart goes out to you & I hope that you find what you are looking for soon.

    I just saw your comment on my blog (runninganddreamingfortwo), so I thought I’d stop by and check yours out. I’ll be adding it to my reading list & rooting you on! Please feel free to reach out to me if you ever want to talk.

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  8. Reading through your cycles and I love your commentary. After going through a couple failed transfers, this is giving me hope. I’m still laughing at your references to your shitting local clinic as f’ing idiots. Best of luck with the twins!

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  9. Hi A,
    First my sincerest and joy-filled congrats to you. My prayers are with you and your girls!! I have been in the IVF world since last March and first want to thank you for sharing your epic journey. You have inspired me and have helped keep me focused on our end goal. We have been to 2 clinics for IVF cycles this year. We first tried FCI in Chicago and then moved to ORM with Dr. Hesla. We have made 5 blasts total to date, all excellent quality with the highest lab grades, but sadly none have tested normal, so we have yet to make it to transfer. I am 45, so the odds of making it this far were slim. But on paper we don’t look 45, so the doctors have all said we have the best chance of success in the worst statistic for live births, given my age. We want to keep going and are not ready to move to donor eggs. I have been to CCRM for the one day work up and Dr. S thinks he can help us if we do the three cycles with banking and testing, just as you did. I am also considering RMANJ because I have full coverage with them. CCRM is at least $50K out of pocket for us. That being said, we want to go to the best place possible because this year will probably be our last chance using my eggs, and if we get our miracle every penny and sacrifice will have been worth it. Any advice or guidance of which clinic you would choose over the other based on your experience? I am so grateful for any advice or guidance you can provide. The choice is overwhelming and feels like a make a break decision. I have researched my research on these clinics and am still unsure.

    I hope you are well and can’t wait for the next update!!

    Warmest Wishes,
    Michelle

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