Parenting after infertility and recurrent loss… Not exactly the rainbows and unicorns I had hoped for.

It is a strange world I inhabit these days. I am intensely grateful to be the mother of two boys I fought hard – desperately, compulsively, fantastically hard – to conceive, carry and avoid losing amidst eight pregnancies I lost along the way. Yet I find myself committing one parenting failure after another. The guilt, shame and utter loneliness of that fact boggles my mind. 

And keeps me awake at night. 

The nightmares and middle-of-the-night waking for hours on end (minimum of 1.5 hours, maximum so far 4 hours, average of 2.5-3 hours) continue.  Of late my subconscious mind has been traumatizing me with nightmares related to a recent waking anxiety of mine – dry drowning. And as of last night, real drowning. The dreams began with my toddler – the Miracle Toddler (MT) – accidentally (dry) drowning a very young puppy. I woke up before finding out if the puppy ultimately survived though it was conscious by the time I awoke in a cold sweat. 

Last night in my final bad dream the MT dropped himself into a moving body of water after he dramatically ran away from me trying to redirect his troublesome behaviour (i.e., he was misbehaving and mad at me for trying to discipline him). In short, it was my fault. Or so it felt. And I couldn’t get into the water immediately to rescue him. I didn’t think to yell back at his dad to call 911. All in all, a monstrous parenting fail. 

I woke up gutted emotionally. I hadn’t yet rescued the MT. I watched him sinking. Everyone moved in slow motion. I hated my mind for ever going to this awful place. And I felt – feel (did I mention that my mother’s first son drowned?) – frightened and unhinged.  Ashamed. And scared that maybe my dreams are trying to tell new something but I don’t know what. 

What on earth is wrong with my mind that it must torment me so?

If I am compassionate and brutally honest with myself (which in my view go hand in hand for how else does one cut through the stories we tell ourselves?) I think there are a few things at play. 

1.  I am struggling with this job of parenting after recurrent loss. I keep waiting for the other shoe to drop. That is a challenging place from which to attempt to live a full, meaningful and present-centred life. I wonder if this qualifies as a form of post-traumatic stress?

2.  I am not getting quality rest. This likely is both fueled by and exacerbates numbers 1 and 3 in this list. 

3.  I have bitten off more than I ought to be chewing. For example, I am doing volunteer work, home renovations by myself, providing full time care to a very young baby and part time care for a very spirited, extremely active and sometimes physically combative three year old (he is in a dayhome part of most weekdays), caring for and nursing back to health a chronically diseased 15-year old cat rescued from a close family member with whom I no longer know how to relate or particularly want to (cue guilt, hurt and anger) and wrestling with massive financial anxieties at home and applying for financing to address that, to name a few items on my to-do and worry lists. Oh and I would really love to write a book before I have to return to work. (Call me a pipe dreamer. You won’t be the first.)

4.  Speaking of work… I am dreading my return to it.  My planned leave is half over and I feel crushed about that. And ripped off; I spent the first eight weeks recovering from two major surgeries that included a ruptured appendix and resulting peritonitis and working my breasts off trying to establish a decent milk supply after the appendicitis fiasco. It feels unfair. The thought of leaving baby Azulito on December 1st makes my heart hurt. 

If it weren’t for the financial issues I would tell the LP I want to stay home longer and that we need to figure out a way to make that happen. But in our home I pay for all of our costs of living – which includes our food and other household purchases, mortgage, utilities, childcare, property taxes, insurance, home and my cell phones, Internet, cable that I never watch, yard care because I’m allergic to cut grass so can’t do that job and because in the few waking hours of each day in which the LP is home I want him to spend it with us not the lawnmower, car payments, car maintenance, gas (except on the LPs car) – and the LP cannot afford to take on those costs while I take a longer leave. 

I could pull the MT out of his dayhome and save $800 a month. But then I would have to find him and baby Azulito a new caregiver when I go back to work. I like our caregiver at the MTs dayhome. He loves her and the kids there. I want to break down and issue big ugly sobs just thinking about that option so it has never really been an option. 

As for cutting other expenses, I already terminated my gym membership to save that monthly expense. The only ones I could really eliminate are the cable and yard work expenses. The yard expenses end after this month anyway so that’s a plus. The LP is a tv addict (in denial) so we have compromised by agreeing to only keep the minimum basic cable and his sports channels. That will save me a couple of hundred dollars per year I think. 

I have thought about selling my car to get rid of the payments and buying something much cheaper but it has some hit and run damage and a stupid pregnant exhausted mommy moment’s damage (I scraped the front bumper) and paying to fix all of that would eliminate a good chunk of the profit not to mention requiring cash we don’t have on hand. Plus then I would end up with an older car that in all likelihood would need major repairs eventually and new tires almost immediately when our scary-driving winter hits. So not a great option though I am considering seeing what I could get if I traded it in for a decent used vehicle just to end the payments on it. Then in a couple of years when we got our financial bearings back maybe I could get a newer car again. 

I have thought about selling our home and moving into a condo close to either work or the dayhome so I could take public transit and we could reduce to one car but with two small kids, a senior dog and now a geriatric cat (you’d never know either animal was a “senior” if you watched them move or saw them but both need medications every day – another expense I cover 100%) it is hard to imagine how that would work. Selling to buy a home in another location would actually cost us money not save any so that’s not an option. 

Is it any wonder I lie awake at night unable to sleep and have terrifying dreams about one or both of my previous boys being taken away from me?  Something has to give. Clearly. 

 

WordPress, you suck

Let me count the ways:

1. You erased my detailed post this morning. Twice. It is not saved in drafts. Gone. Now my phone battery is running low and the power supply I packed last night before catching a red-eye flight seems to have found a new home, preventing me from reconstructing that post.

2. Your stupid app freezes and is über glitchy. Fix your crap or take it out of circulation. It sucks!

3. You keep “upgrading” your editor and each time it becomes less reliable and user-friendly. It also freezes and forgets what it was last instructed to do when resuscitated. Very annoying!

4. You keep asking me if I like you. What do you think?

When Nothing Goes According to Plan: Latest Immune Test Results

Yesterday was a stress-filled day. I discovered I had screwed up at work not once but twice (one much more significant than the other, thankfully, but both affecting other lawyers with whom I have not worked much before so not great for my reputation in either event). That got me down. I was also pulled in a half-dozen different directions, which is always challenging. Then I got an unannounced call from Dr. Braverman, which of course I missed by a millisecond. I knew what that meant before I even returned the call: bad news, particularly since he did not preface the call with an email sending me my report and asking me what time worked to discuss it.

I called back. Finally my December 22, 2014 test results had arrived and his team had completed their analysis and graphing of what they all meant on their own and in the context of where I’ve been and where we hope to go with this pregnancy. In a word, the results were awful. Many of my inflammatory intracellular cytokine levels were the worst they have ever been. Almost all of them are elevated, as are a number of my inflammatory chemokines. All of my Natural Killer cell levels and activity (NK, NKT, NKa) are elevated and I continue to have a notable (and worsening) T1 bias.

In short, my immune system is reacting to this pregnancy with a boatload of inflammation. The diagnosis is significant systemic inflammation and an immune spike at 12.5 weeks (which for those of you who don’t remember is layered upon my last immune spike at 8.5 weeks). The treatment should be IVIg but for reasons discussed below will be more steroids, more frequent Intralipid IV treatments and low-dose aspirin. Oh, and prayers. Heaps of prayers.

This was not the news I was hoping for. Bad didn’t even cut it. Awful made it sound like a root canal. But although I have never had one (yet) my understanding is that a root canal has an end date, a date by which you can expect to have endured sufficient physical and financial discomfort as to be released from purgatory for years to come (at least in relation to the specific tooth in issue). Not so when your immune system fights a pregnancy tooth and nail. Every day until baby is either long gone and a long (read: endless) recovery and grieving process well entrenched or until baby is safely in one’s arms – alive and wriggling – does the terror and torture end.

It would be a gross understatement and trite to say that we have had enough bad news already on our journey to conceive. I guess no one among “the powers that be” is keeping score. Or cares. I do not appreciate being reminded that life’s adventures are often fundamentally “unfair”.

Not that I am suggesting that my and others’ suffering should be spread around among other women struggling to have or grow families. I do not wish on others my experiences or the agonies of those around me with whose suffering I suffer alongside. But I do wish some days that I could catch a break. The litany of bad news becomes exhausting. As do the side effects of the drugs I have to take to address the bad news. Despite what seems like a lousy hand to have been dealt, I would not and do not wish it upon others. At the same time, I would not consider myself human if I did not acknowledge that it sucks and I am unhappy about it.

The call with Dr. Braverman went as well as it could have. I did not break down. I did not even think of crying. I was all business despite the lump in my throat and the fire exploding in my head (why do these calls so often incite a fierce pain in my head?). He repeatedly told and I believe was trying to reassure me that he does not believe that we are at risk of losing this baby right now. I believe him. In his experience, which is considerable, this is very unlikely to happen *right now*.

A silver lining. Thank God. There is one, even now.

For today, Azulito/a should be okay. In future? Well, that’s where things get dodgy again.

The reason for Dr. Braverman’s (and the LP’s and my own) grave concern is that I am at serious risk of developing either or both of intra-uterine growth restriction (IUGR) and preeclampsia (toxemia), each of which is generally considered a serious third-trimester complication though symptoms of preeclampsia can show up in the second trimester. The former poses significant and serious risks to baby; the latter to both baby and mom.

IUGR scares the pants off of me. Preeclampsia scares the pants off of the LP (and it doesn’t give me warm fuzzies either, believe me). Both have been found in scientific studies to have higher rates of occurrence among women who lack Killer Immunoglobulin-like Receptor (KIR) cells, as I do. They are also both more frequent among women with significant systemic inflammation. It sucks to be me, huh?

Back to the treatment protocol. Dr. Braverman wants me to increase my Prednisone from 20 mg (I had finally tapered to that only a few days ago) to 60 mg again for two weeks then stay on 40 mg until a further set of testing is completed, results returned from Reprosource to Dr. B’s team and analysis of them completed. I am also to switch from biweekly to weekly Intralipid IV treatments effective immediately. I was due for the next biweekly treatment this Friday in any event so I am keeping that appointment and adding one every other Friday until further notice.

Returning for a moment to the issue of stress, I recently applied to refinance our home to pay down some of the bills I have incurred in the past two years of trying to bring Azulito/a home. I was feeling pretty good about biting this bullet. I was not expecting a bunch of new immune-treatment-related expenses to crop up. Live and learn.

All of the Intralipid treatments, both medication and payment to the nurse who administers them with her Resident husband at our home, are 100% out-of-pocket as my insurance will cover neither. In total I pay abut $300 CAD per IV which will now amount to a minimum of $1200 per month. Thank goodness all of my other medications have been covered 100% by my insurance. None of the travel to/from New York and none of the testing is insured. Each trip including only airfare and lab expenses to Reprosource have cost me between $1800 and $2400 CAD. I have to go back to NYC at the end of January or very beginning of February (I need to work around my office commitments and a trip I booked to visit my best girl friend so I have not booked a flight yet) to do the next round of immune testing and see where things are at then after weekly Intralipid IVs and two weeks on 60 mg of Prednisone.

This seems like the perfect segue to the ideal treatment protocol for what has been happening with my immune system. Out of the gate in yesterday’s call, Dr. Braverman said he would ordinarily recommend IVIg in this situation notwithstanding the fact that there is no conclusive evidence to establish the likelihood of me responding better to it than Prednisone and Intralipid. My original test results in July indicated that my NK activity was lowered significantly more in the lab test environment with IVIg than with Intralipid (the difference was dramatic as I recall, with a delta of about 20%). Dr. Braverman noted when I asked about that what seems like ages ago that those tests do not necessarily translate into comparable results outside the lab when all of a patient’s immune factors are in play at once.

Dr. Braverman asked me about the logistics of my getting IVIg administered where I live. The chances of that are nil and I told him about my own and My Perfect Breakdown‘s investigations into that reaching the same conclusion. It is simply not going to happen for pregnant patients where we live. Dr. Braverman said he did not understand this but suspected I would say that.

We talked about the logistics and cost of my flying to NYC for IVIg. He noted that I would first need to be tested to ensure I was not allergic. If not, he could arrange for me to receive those treatments through his office at a cost he estimated to be between $4,000 and $5,000 per IV treatment. This would involve me flying to NY throughout the second trimester and for who knows how much longer after that, all with no guarantee of a better result.

Given the logistics, financial considerations, travel stress and risks and where I am in this pregnancy (I am 16 weeks today), Dr. Braverman and I agreed that this was not an ideal option right now. From my perpsective, it is not an option at all. I cannot afford another $20,000 gamble – it’s as simple as that. Dr. Braverman did note that if I were earlier in this pregnancy he would be pushing hard for me to do the IVIg but at almost 16 weeks, when we spoke, he felt that Prednisone, Intralipid and Lovenox was a good second choice. Let’s hope that proves true.

I am trying not to engage any guilt over this decision being largely though not entirely about money. Dr. Braverman said “look, I know you would do anything to keep this baby but some things are simply not practical.” I appreciated that human element and am trying to remind myself, I am doing and have done everything I reasonably can to bring Azulito/a home. I cannot bankrupt myself or my family in the process.

Finally, I also (starting yesterday) resumed taking low-dose (81 mg) aspirin with Dr. B’s agreement. There is medical literature suggesting it can lower the risk of preeclampsia for some women and it is relatively benign otherwise now that we are no longer or not currently worried about bleeding.

In other news, I am getting increasingly concerned about how big I’m growing this early and that I have added more weight by this point in this pregnancy than I did by 27 weeks (the end of the second trimester) in the Miracle Toddler’s pregnancy. Despite the high steroid dose, I had only gained about 5 pounds by my last prenatal appointment in late December and if our bathroom scale is correct I have gained about 8-9 pounds since then. What the heck? I can tell some of that is retained fluid from the steroids but what is up with the rest? Rapid weight gain can mean trouble in the form of increased gestational diabetes and preeclampsia risks. Really? I need more to worry about and more weight to lug around this early? I want to cry!

Enough about me and this very challenging pregnancy. I will end on a positive note by saying I am so incredibly grateful that this baby is inside me and I get to lug it and this extra weight around in the hope of holding wee (but not too wee, please) Azulito/a in my arms in a few more months. Please may that dream come true.

Update: Ultrasound #2 at 7w1d

I cannot leave you all hanging, so here is the quick and dirty:

Baby has grown (measuring almost exactly a week ahead of last Friday and to date at 7w1d – the technician isn’t allowed to give us the crown-rump length (CRL) in millimetres but that will be in the written report my doctor should have by next Tuesday or Wednesday). Baby’s heart is still beating (150 bpm, up from 122 this time last week). Baby’s yolk sac is still nice and tight and not too large (2.9 mm). Everything else looked good.

I’ve reported to Dr. Braverman who said this is all great news.

The LP vomited immediately before we had to leave, making me stressed about getting there late (we were only one minute late). Apparently his lack of fear this morning caught up to him as time and his anxiety progressed over the course of the day. I should probably feel guilty for saying this but I am glad it is not only me who has suffered for this baby. And I’m touched that he actually is as invested as all that (because sometimes I forget, being wrapped up in my own case of nerves so much of the time).

Over and out for now. Thank you all so very, very much for your kindness, love and support.

Book Review – Where Have All the Storks Gone? A His and Hers Guide to Infertility

Last month I was asked if I would review a new book written by a couple about their experiences with infertility, ART, loss and the like. I agreed and am posting the fruits of my labours here for your reading pleasure.

Where Have All the Storks Gone? A His and Hers Guide to Infertility

by Michelle and Chris Miller (Originato, 2014

Reviewed by spiritbabycomehome.wordpress.com

As late bloomers – sometimes by choice and sometimes, as was the case with making babies, not so much – I can relate to Michelle and Chris Miller. Michelle and Chris hail from Austin, Texas and, according to Chris, are victims of “the Miller Curse.” They met in college, took a long time to recognize they had fallen in love, a longer time to get engaged and what likely felt to them and their families as an interminably long time to get – and stay – pregnant.

The couple endured a host of setbacks while chasing their baby-making dream. Early in their trying-to-conceive journey, they decided to write a book about their experiences. Where Have All the Storks Gone? A His and Hers Guide to Infertility is their pièce de résistance.

The book is written in an accessible, engaging he-said, she-said format. Each partner shares her and his perspective on the milestone moments in their relationship and their journey to conceive. Chris and Michelle individually detail their experience undergoing a variety of fertility tests and investigations, medical procedures including several surgeries for poor Michelle, timed intercourse, early pregnancy loss, intra-uterine insemination (IUI) and in vitro fertilization (IVF). The couple also shares their respective views on the unsolicited advice and well-intentioned support they received along the way as well as the bittersweet experience of sharing in a close family member’s successful pregnancies while the authors struggled to conceive and retain a single pregnancy. Their different viewpoints and informative appendix are illuminating, engaging, sometimes funny and full of heart. They also offer food for thought for couples facing infertility and various challenges to growing their own families.

If you are a veteran infertility or recurrent pregnancy loss sufferer, you may think this book is not for you. On the whole, you may be right. Yet where I see this book having value is in the perspective it may offer our fertile, miscarriage-free compatriots. Where Have All the Storks Gone offers an opportunity for the general population and in particular friends and family of fertility-challenged persons to witness how challenging the journey to conceive and retain a viable pregnancy was for the Millers.

The book also offers some insight into how to demonstrate sensitivity, compassion and common sense with others who you know are struggling to conceive or who may be facing such struggles. I found the perspective and humour that Chris lent to the global effort particularly refreshing. I expect that having a male voice in this wilderness would make this book accessible to male readers in a way that other infertility literature may not.

Appreciating the Ground Beneath my Feet

* pregnancy mentioned *

It has been a whirlwind couple of days and nights. I left home at 10:30 pm MDT on Wednesday night and did not get into New York City until 1:30 pm EDT on Thursday. Two and a half hours late. First there was a weather delay in NYC then the airline crew broke a water main on the aircraft and after spending 45 minutes trying to repair it they had us deplane and transfer to a new aircraft.

The flight delay made it impossible to take public transit and still arrive at Dr. Braverman’s office to complete my immune panel testing and my Intralipid IV treatment on time for my 1:00 pm appointment. It takes 2 hours to do the IV over 90 minutes to travel there on public transit and the office closes at 5:00 pm. I did the math, lined up for ground transportation and took a taxi from the airport. The trio should have taken about 45 minutes.

I gave the cab driver the address. I asked if he had a GPS. He said yes. That was a lie. The trip took almost 80 minutes.

I had never yelled at a cab driver before yesterday. There truly is a first time for everything.

The driver finally shut off the meter when it exceeded $180 and I told him I was calling the police. That was after I had told him then begged him several times to exit the highway we were on because he had driven past our exit. Way past. Over half an hour to get back to where I needed to be past. Then he tried to hold me hostage to paying the full fare unless I paid cash. $120 cash. I am still considering a complaint.

The trip should have been about $100. It was raining. Traffic moved well except in a couple of places. I gave him the $120 got a receipt and made a wish that he would hit a tree but not with a fare on board. That’s not nice. I know. I have placated my guilty conscience with the thought that it was an opportunity for us of us to learn some life lessons.

For me: (a) write complaint to airline and ask them to reimburse my cost for part of that cab fare; (b) never hire a car to the middle of Long Island without getting the driver’s express consent to follow my directions; and (c) record that initial conversation about following directions.

For him: (a) don’t mess with a hormonal female running on a serious lack of sleep; (b) above all, don’t lie to her; and (c) Canadians are not all sweetness and maple syrup. (Especially the nauseous, sleep-deprived and desperate-to-stay-pregnant ones.)

Amazingly, both the driver and I survived the ride.

Dr. Braverman stopped by during my IV treatment as he always does. The most noteworthy part of that conversation for me was when he said that if it were not for my loss history there would be nothing about my beta or progesterone or TSH numbers that would suggest things were anything but perfect. Of course he said he cannot tell me not to worry and he cannot guarantee things won’t yet go south. But for right now things look good.

If Monday’s beta looks good there will be no more betas at Dr. Braverman’s request and my first ultrasound will be on a date between November 7-10 (the exact date is up to me and the LP. The LP is not available until November 12 or 13 so I will likely be doing ultrasound #1 alone. I may need some drugs for that.)

This morning the test line on a FRER (First Response Early Result) test was darker than the control line for the first time. I am 10dp5dt this afternoon. I hope that is a good progression.

I asked if we should do the third beta today but Dr. Braverman likes four days between betas #2 and #3. I will have five days between because all of the diagnostic labs in my hometown are shut down this Sunday to do some kind of system work. Of course they are. Why wouldn’t they be?

Thursday evening ended beautifully and more than made up for the fiasco that was my travel from home to Woodbury, Long Island. There was mouth-watering crab, succulent lobster, some of the best garlic butter I’ve ever had, amazing sautéed greens and for my spectacular hosts some award-winning dessert. I had some small and big dog love and the best night’s sleep I have had all week. Thank you, E and M, for being so perfectly awesome.

On the whole I am feeling more grounded and hopeful than I was after beta #2 when the deep dark sea of terror opened up and tried to swallow me whole. I have been trying not to dwell in the land of what-ifs. I am also trying to communicate lovingly and with hope to Gertie and Al. I don’t know if either or both are going to make it but I am trying to send messages to each in the hope they are bot still with us

I do not know if one of them has already left us. I suspect that to be the case not on an intuitive basis but one borne of experience and awareness of the odds we are up against generally with all of my HLA, KIR and inflammation issues. I suppose this logic is a form of defence mechanism. In any event I try not to dwell here either because the thought of having lost another baby already is painful and frightening. It is a place I do not want to go right now.

As much as I know a twin pregnancy would throw my life and the LP’s life upside down, I cannot help but long for both Gertrude and Alice to survive and thrive. I am simply trying not to think or feel too much about this right now. What will be will be. My intentions are set and I am doing my best to let go the rest.

On the symptom front, I have been nauseous and exhausted. I have had an occasional headache and some pretty notable cramping (I’ve had to take Tylenol twice as I find myself getting anxious if the cramps get too intense). I am trying to drink more fluids in case the cramps are a product of dehydration or if that only applies later in pregnancy

That’s it for symptoms but I am very early. This afternoonI am 4 weeks 1 day pregnant if we count transfer day as five days past ovulation and my 19th cycle day in a 28-day cycle. I like to do that because I love fictional constructs in medicine as much as I enjoy them in law. On that note, I am now officially in week 5 of pregnancy number 10. How trippy is that?

Many of my pregnancies have ended in weeks 5 or 6. I am begging my immune system to let this one be different.

As I write this while aboard the second leg of my two-leg return flight, I am deeply grateful to be heading home to the LP and the truly miraculous Miracle Toddler. I am grateful to be doing so with a backpack full of drugs that manifest my intention to have faith in this pregnancy number 10, in Azulito and his compadre or comadre (should both of our beans still be cooking down there) and in myself. I ordered another 30 days’ worth of medications. I hope and pray I get to use those and more as we march forward.

Now that I feel more grounded, I have regained my sense that I can do this. I *am* doing it. There are no guarantees but for now I am pregnant. Feet planted. Heart-in-hand. Facing forward. (Thank you, Jann Arden. Good Mother always makes me cry.). I am giving this my all. And then some.

Fingers crossed on Monday, friends, if you please.

Welcome Home, Sweet Babies

From the depths of my heart I extend each of you who read, supported, commented on my pre-transfer post yesterday tremendous gratitude. Your support and caring means the world to me.

I am relieved and pleased to report that both Gertrude and Alice were smoothly and successfully transferred to my uterus yesterday afternoon. Welcome home, sweet babies.

One of the embryos is not as high quality as the other but Dr. Braverman’s darling embryologist assured me they are both beautiful. I drank the kool-aid. I choose to believe we have a real shot at overcoming my immune and HLA issues this time.

Speaking of beautiful, I was so grateful to get texts and emails from several of my blogging friends today. Thank you for holding me in your thoughts today.

Also on the theme of beautiful events, I enjoyed a delicious meal and excellent company post-transfer on Tuesday evening. Thank you, E and M, for making me feel at home in yours. Thanks are also due to a certain Bull Mastiff who decided my air bed was a good place to hang out for a while in the night. Dog love is so good.

Come to think of it, I feel surrounded by love. I cannot believe I had not noticed this until now. I noticed a presence with me all afternoon but I thought that was the Val.ium talking. The effects of that drug are long gone and I still feel the presence and a general sense of being surrounded by love. I don’t know how to describe it.

On that happy and peaceful note, I must put myself to bed. It was a long, adventurous day, the14th day of October, 2014.

As synchronicity would have it, October 14 happens to mark the one-year anniversary of my registration with WordPress. Here’s hoping that is yet another good sign or at least a happy coincidence.

Setting Intentions / Prayerful Wishes

Monday night this week I flew from New York to Western Canada. Thursday (yesterday) I flew back. This morning I am aboard yet another train on the Long Island Railroad to be stuck in already-bruised arms with my last weekly IV of Intralipid 20% at Dr. Braverman’s office. This is my third cross-continent Intralipid trip in as many weeks.

I am exhausted. Financially. Emotionally. Physically. Exhausted. The tank is empty and the tires need rotating.

When (not “if”, please) I get pregnant I will have to come back on October 24th for the first bi-weekly infusion of Intralipid. I would love to make that trip.

[God, if you are listening (of course you are), please hear my prayers and the prayers and wishes of those who have been so kind and supportive and who want this to work almost as much as I do. As you have heard my prayers for them, please hear their prayers and mine now.]

There are no words to express the depth of longing, the intensity of my desire for my upcoming transfer to yield a viable pregnancy that my immune system does not destroy. My jaw aches from my efforts to hold it still, to stop it from trembling, from clenching to bite back tears. I think about birthing another child I have carried and my chest throbs to the point of bursting.

If ever I understood and believed in the value of detaching from outcome, that wisdom has seemed lost to me lately. I sensed this morning that this needs to change.

I cannot lie. I want this with every ounce of my soul and physical body. I am obsessed. As the LP said it seems this is all I think about. Even when it isn’t, thoughts of this transfer and what it not working might me flood me with anxiety. Acknowledging this has given me all the more reason to practice detachment to outcome.

Here goes. I set my intentions:

1. May our embryos – Gertrude and Alice – survive the thaw.
2. May my transfer on Tuesday go smoothly.
3. May either or both of Gertrude and Alice implant deeply.
4. May my immune system play ball.
5. May I have a safe, healthy and successful pregnancy.

There. Now my task is to let go. This I know. I must set my intentions and, like seeds in the palm of my hand, breathe life over them and watch them sail away, landing where they will and – I hope – taking root to bear the sweetest fruit.

Please, God. Please, Universe. Please be gentle with my intentions. They are all I have left. I surrender freely.

Amen.

Good News and Yet Another Hiccup

Yesterday’s visit with Dr. Braverman went mostly well.

I say mostly because for a pretty deadpan guy he got fairly excited about my uterine lining. On cycle day 8, after only five days on Estrace and 200 units of hCG injections daily (plus all of the immune and related drugs and supplements I am taking), my uterine lining was already trilaminar and measuring 7.5 mm. At least my body can get this part of the baby-making job right. Yay me!

Dr. Braverman actually said he would be happy transferring into that right now. But of course it is a little early for that. My next lining check and blood draw is Monday. If all is looking good I will then get instructions to start progesterone. The hCG injections stop tomorrow (Sunday).

Now for the hiccup. For the first time since Gramercy Fertility (the Manhattan clinic Dr. Braverman uses for IVF retrievals and transfers) told me our embryos had arrived from California, I found out that Gertrude and Alice are in New Jersey with the shipping company. Administrative issues are involved. I won’t get into them here but suffice to say I was a little unhinged.

Upon cross-examination Dr. Braverman reassured me that this should pose no issue as we are going to use a clinic further uptown and his embryologist (who I have spoken to several times before and like) will be there for my transfer. He also assured me there would be no extra cost to me as a result of the administrative issues facing Gramercy right now. That’s good because the shipping company gave me an estimate of about $400 for brief storage in NJ and later shipping to Manhattan after importing from California.

As a friend noted yesterday, there is always something.

I am going for acupuncture today in Manhattan and hoping to check out the High Heels art exhibit in Brooklyn tomorrow. I am heading home Monday evening. Meanwhile, I truly hope things continue to progress and Monday’s appointment brings good news.

Happy weekend wishes to everyone!

Intralipid Presentation by Jeffrey Braverman and Darren Ritsick

Last Friday while I was hanging out in Woodbury, Long Island (because that’s how I roll), I had a nice chat with Dr. Braverman about the cocktail of drugs he has prescribed for me, how they work, why I care, and why in his view “everything” on the Internet about reproductive immunology is “wrong” (because that’s how he rolls).

I harbour no illusions about the fact that if he were aware of my blog and he and/or his team read my attempts to understand and convey that understanding I would fall squarely into the “wrong” camp of misinformation on the world wide web. Since he has effectively admonished not only me but everybody with medical degrees and knowledge far more comprehensive than mine will ever be, I reckon I’m in good company. I also figure that there is no point in trying to perfect my lay-person (read “for Dummies”) posts if they are destined to be “all wrong” in any event. As I’ve said before, I am NOT an MD and I am NOT offering any medical advice here.

With those caveats out of the way, I offer an unsponsored invitation to those of you currently prescribed (or past users of) Intralipid to read the presentation slides to which Dr. Braverman referred me during our fireside chat. Okay, there was no fire. But there was music, thanks to the good doctor (seriously, he turned on the music). He mentioned having given a presentation at the American Society for Reproductive Immunology conference that he chaired (of course he did ;-)) this past June about Intralipid and that it was posted on his clinic’s website. I had not read it previously.

Other than the information I’ve read on medical research sites and compliments of Evil Dr. Google, my only prior experience with Intralipid was when my mother was hospitalized for colon cancer and received the treatment when she could not consume foods by mouth. They had a PICC line in her upper chest and my most vivid memory is her visible pain and distress while having that line installed (I spent every moment I wasn’t in law school at the hospital when my Mom was first diagnosed. I learned and saw things I wish I could erase from my memory. Life is cruel sometimes). When the PICC was inserted, I almost puked. As is true for most of us, it was much harder to watch someone I love suffer than it is to endure my own pain.

Skulking around, I found the presentation to which Dr. Braverman had referred. Apart from the above trip down memory lane, I am here now to share the wealth. I believe the article is written by Dr. Braverman and his Director of Research, Dr. Darren Ritsick (who is very nice and shared some research when I had neupogen questions previously – a shout out to him). The introduction recognizes both authors although the Power Point only includes Dr. Braverman’s name, as he was presenting (to my understanding, which could be “all wrong”).

Before I post the link, I want to add some editorial comments, per the it’s my blog and I’ll cry (or sing) if I want to principle.

First, I am very curious about the discussion at the end of future research directions, eincluding the interaction between Lovenox and IL and gender and IL. I hope by the time that research is reported my interest is a purely academic one and not one borne of personal necessity and a heart broken more times than I care to think about.

Second, I know some of you will not take the time to read the actual Power Point slides. I have worked with human beings in high-stakes ventures long enough to know that not everyone will do the heavy lifting even if they know it may be in their best interests. On that basis, I will also mention an important point I drew from the presentation. Intralipids are NOT a discount substitute for IVIg. Levels not believed at this time to be corrected by Intralipids, according to these authors, include:

* Elevated intracellular cytokines
* Elevated serum cytokines
* Elevated autoantibodies/alloantibodies

See slide 35 for more on the IVIg / IL discussion. Of course, if I could afford IVIg, I would be asking Dr. Braverman about that as an alternative for me given that I hit the first two of those three targets. Alas, money is a live issue and I have not done so. He did say it may be something to consider if attempt #1 with the Intralipid IV and the rest of the cocktail does not work. I am not going there right now.

The presentation also includes some interesting (to me, confessed nerd) discussion about using other oils in the emulsions, such as fish oil or even olive oils, which on the spectrum are less pro-inflammatory than the current/previous formulations that use soybean and safflower oil. See slide 36 for an illustration of this.

Even more fascinating (again, to me) is the possibility that Intralipid may have angiogenic (formation of new blood vessels from existing ones) effects. I’m no doctor but it seems to me that this could be a big deal for women whose placentas are not forming properly for immunological or other reasons.

In short, it seems to me that if Intralipid is an iceberg, reproductive immunology has only explored the tip at this point. How exciting (to me)! To me, it is also a little unfortunate in that I would love to be able to leapfrog ahead to the day when Dr. Braverman and his awesome team could offer a more certain outcome in my case (and yours, fellow immune-affected readers). Alas, the resources of Mr. Peabody and Sherman are not available to me (or you) yet, so onward I march.

Without further ado, the link to presentation can be found here. Further instructions for Dummies (present company included): Click on the blue line that reads “Click here to view Dr. Braverman’s Intralipid PowerPoint Presentation”.

Enjoy, friends and fellow RI and other science/medicine/reproductive health nerds!

A Letter to our Spirit Baby

Dear Azulito,

I have been thinking about you so often lately. I know you are thinking about me, too, because I have felt you very close to me recently.

I wonder if you know when you are on my mind? I wonder what you are up to these days? I wonder if you will come home to us in this lifetime? I wonder if you know the answer to that question?

I wonder if you are waiting for me to get some part of life and being your mother right before you make your grand entrance? I wonder if you are scared, as I am?

I believe that you must know how fiercely, eternally and unconditionally you are loved, how achingly your physical presence is missed and how incredibly much you are wanted. If your confidence in any of these waivers – ever – please re-read this letter.

In reading these words, please know that there is a bottomless sea of love, a flood of affections, a miraculous older brother, an amazing, funny and loving father, a rather fun but occasionally cranky terrier and me, your devoted mother, waiting for you. We love, want and need you more than these or any words could ever fully express.

You are loved. You are wanted. You are needed. We are all waiting for you, beloved Azulito.

Speaking for myself I cannot say the wait has been a patient one. As you may have observed, I am known for my tenacity, my perseverance, my ferocity (in love and in war). I am not known for my patience.

I believe you have so much to teach me and our little family. I know this because you have already taught me and your father so much.

You have taught me to love with an open heart in the face of uncertainty.

You have taught me to hope when the days are as dark as the night and the future seems desperately uncertain.

You have taught me to heal my tattered, weeping heart. Time and time again, you have brought this lesson home to me.

You have taught me to listen to my body and myself.

You have taught me that exercising patience does not of itself guarantee success.

You have taught me that success when it comes to creating and sustaining life is never guaranteed.

You have taught me to dig deep and find the courage to move forward when surrounded by armies of fear’s soldiers.

You have taught me to believe in you. And you have taught me – are teaching me – to believe in me. No matter what happens.

You have taught me to trust my instinct and not take the easy (or the less costly) road or play ostrich. In doing so you have taught me the inherent worth of having meaningful answers when others insist that none exist.

You have taught me to hold fear’s hand and to charm fear’s cobra.

You have taught me to act bravely against all odds. In other words, you have taught me to fake it when I cannot make it.

You have taught me to give to others what I wish I could have received earlier in life myself and what I am so fortunate to be receiving from others now, too.

You have taught me the inimitable power of connection.

You have taught me – are teaching me – to pay heed to and trust my perceptions.

You have taught me not only to feel compassion but to show compassion to others who are hurting as I have hurt in losing my physical connection with you over and over again.

You have taught me that faith is precious and that a faithless life is a hollow one that reverberates its vacuous loneliness in perpetuity.

You have taught me that the frequency with which bad things happen to good people is no measure of their entitlement to good things, including miracles.

You have taught me to believe in miracles.

You have taught me that miracles do happen. I would never have appreciated this as intimately as I do now if you had not taught me all of the lessons I have recited above and below this one.

You have taught me that there is no quota on miracles in a person’s lifetime and that for this reason it is okay to ask for more than one to enter a given life.

You have taught me – and you see the need to keep teaching me – how important it is for me to love and take care of myself. I am a work in progress in this area. Thank you for bearing with me.

You have taught me that hard work does not always mean we accomplish our goals.

You have taught me that I am not in charge. You have taught me that there is deep wisdom in accepting this fact.

You have taught me that when we finally are reunited for a healthy pregnancy and a live birth, I will have learned many of the skills and acquired some of the wisdom that your father and I will need to nurture and support you.

I feel the warmth of your love every time you flash your blue/purple and yellow lights behind my eyes, around my head as I try to communicate with you and sometimes when I am not yet aware of your presence. I love it when you surprise me by showing up unexpectedly. I love it when you come after I call out to you.

Although I do not know when we will be reunited for the ultimate time, I trust that we are meant to be together. I know that you will come to me in time. As much as I hope that time is soon, my love for you does not flag and will never waiver no matter how long I wait to hold your hands in mine.

I sometimes worry that you may think I have my heart set on you showing up as a boy. I have been fearful sometimes that you may feel less welcomed into our family and in particular my life if your destiny is to arrive as a girl. I have done considerable soul-searching about this in the past year and I can say with confidence that I will be delighted to be your mother whether you are girl, boy, tomboy, girly boy, hermaphrodite, or destined to be transgendered.

I love you, Azulito. I love you as you *are*, whatever that may bring.

Please come home, little one.

Love,
Mom

On the Road Again

It is very early. I have slept very little. I have been waiting for my menses to show up and had hoped to see red this morning. Nope. Of course not. Why would things unfold as I want them to do?

Although I have no checked bags, I want to throw my bushel of fears into cargo and leave her there.

We are about to board. This is it. I see Dr. Braverman tomorrow after my first intralipids infusion in his office. I have already paid a small fortune for many of the meds I will be taking.

I would be lying if I said am not scared. I’m scared the cycle will be cancelled due to a cyst or the like. I am afraid our embryos won’t make it. I am afraid of this cycle failing in any number of ways.

That said, I have my hypnotherapy recording with me and I plan to listen to that on the first flight to settle me down and hopefully to reconnect with Azulito, our little spirit baby.

Here we go!

A Poll – Estrogen Protocol or OC/Lupron FET?

I have a dilemma.  I need to decide sometime in the next week whether to use a fully-medication, suppression-based FET protocol that relies upon oral contraceptives (OC) and Lupron to suppress ovulation and precisely time the date of transfer or to skip the OC and Lupron and go with an estrogen protocol in which ovulation may have to be monitored if it is not suppressed by the estrogen treatment.

There are pros and cons to each and I am having trouble weighing out which is better for me as my past experience was with a natural FET protocol in which the only medications I took were Ovidrel to ensure precise timing of ovulation and accurate pinpointing of transfer day as a result and micronized progesterone for luteal phase support. Both of the medicated protocols I’ve outlined below include progesterone support in the luteal phase and for 5 days before transfer.

Maybe you lovely folks can help me decide?  I’ve included a poll at the end of this post, after the descriptions of each protocol and their respective pros and cons from my perspective.  If you have personal experience with either or both, I would be especially keen to hear from you, including whether your FET was successful.  Even if you have no experience but thoughts on what might be best given what I’ve described below, I would be very grateful to hear from you, too.

Thank you!

OC/Lupron Protocol

On this protocol I would start oral contraceptives or OC on the third day of my next cycle (which will likely be around the end of next week).  I would take OC for two weeks and it would be overlapped with Lupron and followed by estrogen priming, an end to Lupron and start of progesterone supplementation (while estrogen would also be continued).  Immune meds would begin around the same time as estrogen priming. I do not yet know how many days of estrogen priming Dr. Braverman suggests generally.

Pros

The OC/Lupron protocol has the added convenience of reducing the number of monitoring appointments and in my case would allow me to book flights without risk of expensive changes as well as allowing me to book a very limited amount of time away from work, at least in principle.  If all goes as planned, I would only need to travel to New York the day before transfer and stay there for about 2-3 days (depending on return flights, time of transfer and if I wanted to wait until the day after to return home).

It would allow me to miss the minimum amount of time from work, assuming all goes according to plan.

I would know our date of transfer well in advance, assuming all goes according to plan.

I start the immune meds after two weeks on OC.

There is some evidence to suggest Lupron helps with implantation.

Slightly lower travel costs.

Cons

If I cannot get quality images of my uterine lining while on the estrogen priming portion of this protocol to send to Dr. Braverman, I would still need to travel earlier than transfer day (on day 8 of estrogen priming), making this very similar to the Estrogen Priming Protocol though probably still slightly less time missed from the office.

I bleed through on OC and feel quite sick to my stomach, bloated and generally lousy.

I get bad headaches on Lupron even when I drink buckets of water and take supplements to support liver function.

The monitoring appointments would be done by ultrasound technicians who are not trained to do what I would be asking of them because I do not have a RE where I live.  This makes me nervous but perhaps unnecessarily.

Two more needles per day for about 3 weeks while I am on Lupron.  I’m not super fussed about needles so this is a pretty minor “con” (hence it’s place at the end of the list).

Estrogen Protocol

The estrogen protocol would have me start estrogen supplementation on cycle day three (again, late next week or next weekend, most likely).  I would be monitored through ultrasound and blood tests to track for ovulation (which my last two cycles was on day 15 and 16 respectively).  I do not know when immune meds would start but I suspect it would be the same time as estrogen, given that is when they are started in the OC/Lupron protocol.

Pros

I would allow my body to function somewhat normally (i.e., I will be permitted to ovulate rather than suppressing it), which could assist in my body producing its own progesterone rather than relying entirely on supplementation.I avoid the Lupron headaches.

The RE at Dr. Braverman’s Manhattan clinic would be doing the critical monitoring appointments, as opposed to the less skilled technicians in my local facilities (because I do not have a RE here and the wait to get into one is > 12 months so I’m not going to try now).

I avoid the OC nausea and bleeding.

I would take additional hCG injections to assist with implantation (replacing the possible implantation support Lupron would provide).

Two less needles per day for the approximately 3 weeks I’d otherwise be on Lupron.

Cons

I will need to book more time away from work.

I will be unable to precisely predict my travel dates to return between when ovulation is triggered (I am assuming Dr. Braverman would trigger it to ensure precision in timing the transfer and I would want this).

Increased travel costs unless I can couch-surf in the Big Apple for part of my stay.

Poll

Here it is, your chance to participate!  What do you think?  Feel free to comment as well as or instead of taking the poll.  Thank you!

 

Test Results In (and completely mind-boggling)

This will be relatively brief and largely prepared in honour of those among my readers who may be waiting in anticipation.  This post is not borne of anything particularly revelatory or amusing I may have to write about.  In contemporary vernacular  it may consist of a heap of meh.  You have been warned.

Still with me despite that disclaimer?  I’m buying you a latte (or your choice of beverage – I don’t do dairy or caffeine so don’t think I’ll be offended if you nix the latte suggestion).

This week has been sheer madness at work.  Thanks to a two-hour time difference and my propensity to arrive at work super early, I have had a flurry of telephone conversations with folks on the East Coast and, during later periods of the day, on the West Coast.  Here’s the skinny:

  1. I have cancelled our consultation with a RE closer to home (in case he would work with Dr. Braverman should Dr. Braverman design an immune protocol for us) because although the staff and embryologist at his clinic are the most competent and kind I’ve encountered in my experience to date (with a total of four IVF clinics), the Lab Director told me on Monday this week that their lab has no experience with the cryopreservation device in which our embryos were vitrified.  This is one gamble we have chosen not to take voluntarily.  Too bad.  I now have September 4th free if any of you want to join me for that non-latte?
  2. In a tailspin of panic, I obtained the cellular telephone number of the embryologist at Dr. Braverman’s lab.  Amazingly,  he took my call at 8:30 on a morning when, unbeknown to me, he was (and still is) on vacation. (I later learned that the entire lab is closed until August 24th while Dr. Braverman is “on vacation” or *something* – he’s not in the office for 3 days.  That makes my work-life “balance” sound positively zen-like!)  The embryologist confirmed that he and his lab folks have experience with the device and the medium in which our embryos were vitrified.  And he answered my questions about shipping and gave me the phone number to the company that Dr. B’s office uses for transporting such precious cargo.  All of that without ever mentioning that he was not at work and currently on vacation.  Bless him!  (I did feel a little guilty but mostly grateful when I found out about the lab closure, if you’re wondering.)
  3. New York state law requires an exemption letter from the state health department for any human tissue transported from out-of-state.  This process can take 2-3 weeks to complete successfully.  Thank you again, sleepy-sounding (understandably in hindsight) yet incredibly informative embryologist!
  4. I foolishly (in retrospect) asked if Reprosource had done the AMH testing given that I never received a receipt for that panel.  My contact there confirmed that they had done the panel of tests but forgotten to charge me.  There goes another $145 USD I could have saved if I’d been less honest.
  5. It will cost us approximately $1,000 USD, 2-3 weeks (see above) and a boat load of paperwork to have our remaining two frozen DE embryos shipped from the southern West Coast to the northern East Coast should we end up doing our next FET with Dr. Braverman’s clinic.
  6. I got our results from the couples’ immune (expanded) panels of testing ordered by Dr. Braverman when we met with him on July 31, 2014.  I am still trying to decipher a good portion of them and expect that there is limited value in my summarizing bits and pieces for you here because the one thing they make very clear to me is that the true value in the $3,000 USD I paid to Braverman for immune testing/interpretation and protocol design lies in the interpretation and design component (particularly since the testing itself is all done by Reprosource, to whom we paid an additional $2,400 USD).  In short, I will wait to offer any meaningful analysis or significance of the results until we get what I paid for from Dr. Braverman.  I was told this week that he will need “about a week” after he gets back (tomorrow – August 22nd) and has a chance to review and interpret.  I hope that’s true and we get to speak with him by the end of next week but I’m not holding my breath.  Stay tuned!

Now, as Porky Pig would say, abadabadabada… that’s all folks!

Gratitude, an Update and Animal Spirit Guides

Gratitude

First, I wish to extend a warmly heartfelt thank you to each of you who shared your views in response to my last post.  My gratitude runs deep and wide and I hope you’re soaking in it or soaking it in, as you wish.

Update

Second, I wanted to let you know that I am feeling better for having given voice to the darkness and named the place in which I am.

I told my TCM/acupuncturist yesterday how I had been feeling. She said she would be gearing a portion of my treatment to taking my nervous system “down a notch” and lightening my spirit. It seems to have worked. I feel less fatalistic today and more flat. I will readily take flat over where I have been the last few weeks.

I do not feel better about the prospects of giving up and going home, broke (translation: signficantly in debt) and empty-handed for our efforts of 2013 and 2014 to have one more living child.  I feel miserable about that.  However, I am more at peace with the prospect of that being a real possibility and a starting place to say goodbye to this tortuous journey once and for all.  And I am ready to say enough to it all if that is the option that makes the most sense.

I am a little less ready to be excited about any prospect of continuing to try to have another living child and the risks associated with doing so.  That is not to say I am not willing to give this gig one last hurrah should there be any reasonable possibility of success.

Of course, I am having a hard time imagining myself being filled with the lightness, innocence and enthusiasm that accompanied my last DE FET.  I may need professional help to even get myself off the ground (I’m thinking hypnotherapy at the moment but we’ll  see).  I will not be full of faith that it will work, of that I am fairly confident.  This is (or perhaps I am?) a casualty of past experience.  So it goes.

I have also decided (with your help – thank you again) that I will contact the lab that did our immunological testing (Reprosource) on Monday to ask them to tell me if they have already sent over our results to Dr. Braverman’s office or, if not, that they let me know once that happens so I can start pestering Dr. B and his staff about (a) getting a copy; and (b) scheduling a follow-up consult to discuss Dr. B’s impressions and any protocol design he comes up with if the results yield something beyond “inconclusive” or “normal” (as all of my tests to date have done).

Animal Spirit Guides

I have always thought of myself as inclined toward the tangible, literal and concrete notwithstanding my affiliation with and affinity for the arts.  At work, I’m all business for the most part.  Heck, I work in one of the most conservative professions around and up to this point where I practice it remains one of only three self-governing professions, which means we are a rather uptight bunch who are expected to police ourselves and our colleagues (don’t get me started on that, I could create a hundred posts on a different blog about the implications and complications of self-governance and the move to police peers while recognizing me and my peers are members of a profession with inordinately high rates of stress, addiction and other mental illnesses).

I believe in and do my best to practice attachment parenting not because I’m a crunchy granola mama but because at a pragmatic level it simply makes sense to me and at an experiential level it is what floats my boat and helps me believe I am not recreating the parts of my childhood I do not want reproduced in my own child’s (I do not dare say children’s) life.

All of that to say that I have staked out territory for myself as someone very grounded in a present reality and not prone to flights of  fancy or aspirations to engage the supernatural.  To be honest, I do not even know what “the supernatural” means.  I do consider myself spiritual although I am not a card-carrying member of any religious organization or congregation.

Yet, I named this blog “spirit baby come home”.   Since before I started this blog I have been attempting to communicate with spirits or something that I do not fully understand and cannot explain well in words (or in any other medium, really).   And one day along this journey that began at the start of 2013 (when the Miracle Toddler was about to complete his first year of life outside my womb), I began seeing animals and considering the messages that my sighting of them were meant to convey.  Along the way, I bought a deck of Animal Spirit Guide cards by Steven Farmer, PhD.

This week, I saw a number of animals alone or in groups.  Their sightings left me wondering what was happening, what messages the spirit world or my intuition were attempting to communicate to me.  Yesterday I was struck by a sentence in the Practical Intuition workbook by Laura Day that my TCM doc prescribed me to read which suggested that we notice the things we do in our visual world for a reason (I would imagine the same principle applies to the auditory and other sensory world for individuals who are not sighted or have very limited vision). In short, Day suggests that our intuition is sending us messages all the time by choosing what we notice and what we do not.

How fascinating!

I cannot help but believe that there is some truth to this.  There is a reason (even if a contrived one to which I may have unconsciously or subconsciously willed my mind to be alive) I have noticed a flock of eight magpies (which I subsequently read to signify “a wish”) and every hare that has appeared around town (which I have always taken to represent fertility) this past week.

Just as it did when the LP and I were in the taxi to La Guardia after our trip to New York to meet Dr. Braverman (which you can read more about here if you wish and have not already done so), my intuition or something is trying to send me a very important message.  And I am not ashamed to admit that I may be too stubborn, too broken or too pessimistic to listen or want to hear it these days.

Such are the musings of my messy mind of late.

I can only hope that the messages are for real, that the dream I’ve for all intents and purposes very nearly abandoned comes true.  I can only hope that I am proven wrong in believing we will never get what we have worked so hard, incurred so much debt, and lost so much sleep and health and wellness to have.

Except for now I cannot hold onto that hope.  Right here and right now I am at war with hope.  She has betrayed me one time too many and I do not know that I will ever trust her again.

And so, my dear friends, it goes.

Today’s Dilemma & a Question for Ya’ll

I have it on good authority (online friend and fellow DE IVFer, IF and RPL sufferer) that my blood test results from Reprosouce, the lab used by the Reproductive Immunologist we saw in late July (Dr. Braverman for anyone who just joined the show or has been on vacation – literally or figuratively – during my recent posts), should be “in”.  By “in” I mean that Dr. Braverman’s clinic should have copies of them.   I say this because my friend, who had blood drawn the day before the LP and I did, has her results already (obtained through her IVF clinic at home, who was sent a copy, not through Braverman’s office, although Dr. B did tell her in an email that he’d need “a few days” to review and do the protocol design – she’s chosen the same menu item as we did from his list of offerings).

On July 31st, Dr. Braverman told us to expect to have a further consult with him to review the results and receive his proposed protocol (or his conclusion that the tests revealed nothing particularly problematic and there was no need for a RI-designed protocol – highly unlikely if only because that would cost him instead of me $2,000 USD).  The nurse with whom he works exclusively said 4-6 weeks on the same day.

In other news:  We have a teleconsult (or Skype if we so choose) with an RE closer to home (but still a flight and hotel accommodation away) who is not a reproductive immunologist but does believe in immunological causes of recurrent pregnancy loss/IVF failure/miscarriage and prescribes some immune treatment protocols for patients with such histories.  I’ve got another friend who is successfully pregnant in her 40s with her own eggs after a fresh IVF cycle with him using a prophylactic immune protocol despite having had numerous unsuccessful cycles after a live birth with another reputable clinic (that does not do immune protocols to my knowledge and certainly didn’t with my friend despite her history).

I’ve had extensive communications with this clinic’s lab director and intake coordinator on the premise that we need a clinic and lab that can work with the two frozen DE embryos we’ve got and who will work with Dr. Braverman should we get a protocol design from him to address any immunological issues he may identify in the coming weeks. They’ve got all of my/our records including all testing to date as well as a breakdown of my RPL history.  The consult is scheduled for September 4, 2014.

The Dilemma and Question for Ya’ll:  Do I call or e-mail and find out if I can get a copy of our results or wait patiently for Dr. B to take his sweet time getting to my number in line?

Let’s consider some of the pros and cons of jumping the gun (i.e., asking for results before our next consult with Dr. Braverman).

Pros:

  • If I can get the results I could share them with the RE closer to home at our September 4th consult, even if we haven’t consulted with Dr. B by then (which would be the case if he sticks to his 6 weeks projection);
  • I might have some idea whether there are any results that suggest a bona fide immunological issue to contend with (see point number two under “cons” for the corollary to this);
  • If I asked and Dr. Braverman consented, maybe he would get our protocol design done sooner so maybe we could start the FET process sooner rather than later (i.e, in late August/early September instead of late September/early October seeing as how I am expecting my next natural cycle to start at the end of August);
  • I paid for this stuff, I have a right to a copy on demand, don’t I?; and
  • I’m tired of being in limbo and not having any real answers to why the heck my womb is so welcoming of but so destructive to the little lives we conceive and getting the results, even if I can only understand some of them, could either:
    • if they show abnormal levels, help me feel like there is a reason for all of this madness; or
    • if they reveal nothing out of normal range as most of my results have done to date, allow me to start the process of grieving and accepting that unless we chose to use a gestational carrier – which we cannot afford – then this journey is finally and truly over for me.

Cons:

  • Dr. Braverman’s office will refuse to give me the results on the grounds that they don’t do that until he is ready to discuss them or I’m an established (i.e., vintage) patient of his, in which case I may develop a bitter taste (i.e, contempt) for and latent (or express) hostility toward yet another medical professional who, arrogant or not, I need far more than he needs me;
  • Even if I can get the results, I will have no idea what the results mean without someone far smarter than me in this area interpreting them for me;
  • Sleeping dogs don’t bite.  Translation:  whether we get the results or not and whether I understand some or none of them, I will spend the next several weeks in agony waiting for the follow-up consult to help me figure out what the hell they mean if we get the results and why the hell I blew ~$7,000 travelling to New York to consult with and have testing ordered by Dr. FIGJAM (see postscript at end of this post if you aren’t familiar with that abbreviation) if I ask but am refused a copy of the results before the follow-up consult;
  • If I asked and Dr. Braverman consented, maybe he would get our protocol design done sooner so maybe we could start the FET process circa September instead of October; and
  • If I didn’t ask or if he refused to give me results before our follow-up consult, I would be guaranteed to wait until at least late September or early October to start any FET cycle we may decide to do with Dr. Braverman (if we go with the clinic closer to home, I have no idea when they could have us start, so this may be meaningless if the protocol design was not super aggressive and I felt comfortable going with the closer RE and his lab can accept our embryos).

When I review my cons, I see that I am essentially afraid of rejection and it sending me off the deep end should it occur.  Initially this made me bristle and think I should demand the results now, darn it.  On reflection, I am not so sure about that.

When I review the pros, I see that I am scared and impatient.  Ugh.  I do not like those characteristics about myself, though I know them well.

August was supposed to be our “month off”.  Except I’m on these liver pills from the TCM doctor/acupuncturist and while they do seem to correlate with a decrease in some of my immune/allergic responses (my eyes are feeling better in particular but I am just entering my luteal phase so that could change in a few days), they also seem to correlate with an increase in the depression symptoms I was experiencing before I went on them (though that could be coincidental, I’m less inclined to believe that the other correlation is coincidental).  And even if I can’t blame the new crap I’m ingesting (no disrespect to TCM or my acupuncturist angels intended), I need to be honest with myself that:

  • I am [insert expletive here] miserable;
  • I want to quit;
  • I hate this rollercoaster; and
  • I cannot, despite all kinds of well-intenioned advice, just “turn off” for a month and “enjoy life”.    

I have a little more to say on that last point.  The unavoidable fact (which people who have not been where I and those of you who are also “here” are do not seem to “get” even if they say “I get it that…”) is that secondary infertility and recurrent pregnancy loss define who I am every minute of every day so long as I am on this “journey” to have another living child.  This is not me throwing a pity party.  I am not feeling sorry for myself.  I am acknowledging the well into which I have fallen and from which I cannot readily get out.  I am where I am.

The sad [insert more expletives (the really nasty ones) here] reality is that my pain is not only a constant presence – even if I try to avoid thinking about or feeling it for a month (who really thinks a person or at least this person can do that?  Why do otherwise sane, sensitive and compassionate people even suggest this?).  Beyond a constant presence, my pain over our lost babies and inability to stay pregnant has become a defining characteristic of who I [insert really nasty expletive here] am in this very moment.

If I practice mindfulness, what I know about this present moment is that my heart aches and I feel broken beyond repair, even if I can behave pleasantly, playfully or professionally depending on what’s required of me at any given moment in my waking hours.  How can anyone ask me to take a vacation from this knowledge and reality for any period of time?  If that is truly possible, I need an instruction manual and some real life examples of how to disengage from the suffering that has come to define who I am right here, right now.

At this second I am leaning toward waiting my turn, as completely uncharacteristic of me as that sounds.  In case it is not completely obvious from the caveats in the preceding sentence, I must admit that my leanings could change in a heartbeat.  In fact, as I was drafting this post I was quite sure I was going to conclude that I should ask for my results before the 6-week mark.

In light of my inevitable equivocation, I am turning the mic over to all of you.  Your mission – should you choose to accept it – is to riddle me this:

  • What do you think (about any of the above, if you aren’t inclined to vote on “ask” or “don’t ask”)?
  • What would you do and why?
  • Where does one get the manual on how to disengage one’s present reality?

Please accept my sincere and immense gratitude in advance for sharing your ideas and experiences.

Hasta Luego, amigos mios!

 

P.S.  FIGJAM = F*** I’m good, just ask me.  I credit the LP with having taught me this while watching some stupid masters or another on the Golf Channel.  He used it in relation to a certain player whom some of you or your significant others may know. 😉

 

I Hate Mondays (and that thief of joy, Recurrent Pregnancy Loss)

That is not entirely true. I don’t really hate all Mondays, though on this particular one I could have shot the whole day down (thank you, Geldof and your Boomtown Rats).

I had an interesting day at work, but that was about the only part that went well. The day started with a thoughtful and considerate text from my sister-in-law. who I love and greatly appreciate (including for things like her good intentions in sending that text). The LP’s nephew and his wife are expecting.  She wanted to tell me before the happy expectant mama called tonight to surprise us.  Amen for avoiding that surprise.

Reading the text, I burst into tears. I didn’t even need to scroll down to the part about the pregnancy. About four words in, I knew. In fact, somewhere inside I already knew. I don’t know exactly how or why, but moments before I had sent a “Happy Anniversary” message to the same couple and something just told me, they were going to have a baby.

Two years ago, when our miracle toddler was still new and I was in no position to be conceiving a sibling, this news would have rocked my world. A year ago, it would have hurt but I would still have been over the moon excited. In fact, a year ago I was pregnant myself and already over the moon because that baby did not die within the first week or two after me discovering she was there. But she did die. In my womb. Like so many others.

I managed to (a) dash off a congratulatory note to the expectant mama; and (b) give the LP a quick heads-up in case he also wanted to avoid ambush (he did).

I was so busy today at work I could not think about how I felt after that initial outpouring of tears. Until I drove home. More tears. Sobs. Heartbroken, shoulder-shaking, gut-wrenching sobs making me afraid to keep driving. All of the fear and grief and sadness I’ve been stuffing down these past few weeks as I have come to accept that a one-child family may be all that destiny has in store for me this time around on earth poured itself out through my eyes, my nose, my mouth.

I called the LP and sobbed away. He sounded so helpless (and I’m sure that’s exactly how he felt) and broken himself. He said he wished sometimes this was all over or we could just give up. Me too, I admitted. I think of that almost every day. I am getting to the end of my line, I think. A broken heart apparently can’t be glued back together indefinitely. At some point, it needs to be retired. Maybe I need to grow a new one?

I let the LP go and kept driving. He called back and said “did you get my e-mail?” You will be glad to know I had not broken the distracted driving laws even further by checking my e-mails while already impaired by the flow of tears. I said I had not. “Robin Williams died.” I was stunned. I heard someone (me, apparently) ask “how did it happen?” but I already knew. When the LP told me it was suicide, I said “I knew that. I always knew he would die like that.” But I do not recall ever thinking about that consciously. Yet, when the words came out of my mouth, I knew they were true. I did know. I had always known. And it had always made me sad, as every death from depression/suicide makes me deeply, deeply sad. As someone who has walked that path but survived – as someone who would possibly have walked that path and not survived in these past 2 years if not for the miracle toddler – I wear my grief about suicides and severe depression on my sleeve.

I hate Mondays like today.

The incident with the Robin Williams news was the second time today I knew the answer before I asked the question or read the text. Eerie. Jarring. God-awful. I don’t like knowing the punch line to the jokes that leave me shaking and broken-feeling.

I hate Mondays like today.

I hoped the whole way home that I would not encounter any police. I could have gotten a ticket for being impaired or a distracted driver. I was not drinking, but I may as well have been. I was a hot mess.

I hate Mondays like today.

I hate this Monday and I hate that the unfettered joy I wish I felt and could embrace for our family’s pregnancy is instead tainted by my own grief and the crappy place I have been in the last couple of weeks. This is not just any pregnancy.  The ecstatic and deserving couple are our miracle toddler’s godparents – they mean a great deal to us and I teased her about having a baby of her own for a while after they got married and even before, despite them being young.  I want to be over the moon for them, not sobbing and heartbroken.

But the truth is, I am sobbing and heartbroken on this lousy August Monday.

Test Results – Guess What? I am Allergic!

This is likely to be another mostly clinical and unexciting post.  

On the good news front for the few of you who aren’t pregnant I will not be talking about being pregnant.  And to those of you who are pregnant, my congratulations and my sincere apologies if the above disclaimer makes you feel unwelcome. That is NOT my intent or objective but I must be honest… I’ve seen way too many pregnant women in my dreams, in airports, on planes, at my dental appointment (why do I keep getting pregnant dental assistants or hygienists – I’m batting 3 for 3 in the last 18 months – never the same one, either!), in hotels, on the streets and even at the live theatre we took in over the past few days and I feel a sharp stabbing pain in my chest with each preggo sighting again – thought I was over this but not so much apparently. Or not right now.   (Seriously, God, do I need my nose rubbed in it this way? It kind of smarts.)

Still here? Glad at least one of you is still reading!

First things first. The blood test results from Tuesday this week arrived just in time for our appointment in Long Island with Dr. Braverman. Here they are:

Cortisol: normal

Fasting insulin: normal

Fasting glucose: normal

ALT: normal

CRP: normal 

TSH: 1.2 

HbA1C: normal

Cholesterol (all 3 levels): normal

WBC: normal

C-reactive protein: normal

Anti-transglutaminase IgA: low (negative)

The reference range for each of the following test results is < 0.35 kU/L, meaning I am allergic and reactive to all of them:

IgE Antibody dog dander:  39.90 (!!)

IgE Antibody cat dander:  9.57

IgE Antibody horse dander:  5.61

IgE Ab D. pteronyssinus dust mite:  2.88

IgE Ab Milk:  2.21

IgE Ab Western ragweed:  1.55

IgE Antibody peanut:  0.99

IgE Antibody egg white:  0.86

IgE Ab Timothy grass:  0.53

So, yeah, you could say I have a few allergies. The dog one scares the heck out of me. Our dog is supposedly non allergenic and I never used to react to her but lately I have been doing so. In the good news department, I am not reactive to cod fish, Cladosporium herbarum (the LP says this is a form of mold. Dr. Google confirmed this), or Alternaria tenuis (Dr. Google tells me this is also a plant mold). Yay me! 

Okay the first flight is landing so next update will have to wait!

 

 

Not In Love but… Willing to Put One Foot in Front of the Other

We had our first telephone consult with the infamous Dr. Braverman today.  And it went… okay.

We waited 40 minutes past our appointment time.  And despite being told that I had to complete his 14-page questionnaire, he had neither received it (I was told it went directly to him for privacy reasons) nor read it. If I had not known this doctor practiced in NY, I would have been annoyed by this point.  Instead, the LP and I just exchanged eye rolls at opportune moments during the teleconference and at one point I wrote down “NYer” on my notepad and the LP nodded and rolled his eyes.

At the end of the call he had promised to transfer us to someone who would confirm that the person who collects the blood samples for the immunological testing is in his lab next week Thursday for our appointment.  Instead, he hung up hastily after saying he needed to take another call.  Oops.  No big deal, I called back and confirmed (for a second time) that all was in place.  I’ve read many complaints about the staff at this clinic but so far apart from a long wait to have my initial calls returned, the staff I’ve dealt with have been very helpful and mostly attentive.

The jury is still out on Dr. Braverman, but I went into this knowing I do not need to like this man, I just need to see if I can trust him.  Unlike many of the wonderful women I have encountered online who are [now pregnant  or with living children despite immune issues and RPL histories not unlike my own] patients or former patients of Dr. B, I cannot say I am in love.  At least not yet.  I am skeptical that I ever will be.  I think the cynicism that came from having defended doctors when they got into legal troubles and from being onto our third reproductive specialist, 100% out-of-pocket, in 18 months might make me a “tough customer” as the kids on Arthur would say (I never watched that show before I had the MT, who has it downloaded on an iPad… yes, I let my toddler watch tv shows on an iPad. Sue me.).

Enough mockery and negativity.  On to what was said.

First, Dr. B. thinks I have “an implantation problem” (not because he read the 14 pages of history that it took me two and a half hours to complete, but because I can now, in my vast experience yapping with specialists, narrow the essential evidence down to a very short synopsis and some key facts). Okay, I mean it this time, enough negativity about him being completely unprepared to talk with us today.

Second, Dr. B does not think much of the high IgE levels other than to say I may have hyper-IgE syndrome which involves an excessive histamine release, which can lead to implantation problems.  He agreed when I said it’s hard to know whether there is a causal connection or a correlation.  He said that women need some histamine to permit implantation but too much can be a problem.  Unfortunately, there is no way to test for histamine (???).  He also said we can use stronger drugs than steroids (???). He kind of meandered after this and mentioned two types of immune issues, being TH2 or antibody-based and TH1 or cellular-based, and suggested that hyper-IgE would suggest the former.

Third, he affirmed my decision not to do any more embryo transfers until we have a diagnosis. In his view without a diagnosis you’re basically guessing and cannot make a meaningful prognosis or effective plan (my words, not his).

I’m not sure that is true for anyone who does not have some kind of immune issue happening.  I don’t even know if my issues are immunological or just look that way, by which I mean I’m not sure which is the chicken and which is the egg or if they are apples and oranges and just seem to both look like pears at the moment.  I’m not sure I’m convinced that all of the immunological testing he will have us do is of real value.  But I am doing it.  One foot in front of the other.  There is something to be learned here and learning is what Azulito has sent me forth to do.  So do it I shall.

Fourth, the plan is to do all of the testing he prescribes, plan a protocol, do my next FET at his clinic and hope for  a positive outcome.  If that happens the next plan is either for me to find an ObGyn in my city who will work with me to have monitoring and/or prescribing done (that, I can safely say, is not going to be easy and may prove impossible) or for me to return to New York at 6 weeks and 10 weeks so he can do my monitoring and prescribe me meds accordingly (New York state law requires patients be physically present for Dr. B. to write them scripts).

So much for my retirement plan.  Oh yeah, what retirement plan?

Finally, I asked about what blood tests I might ask my doctor to do here.  He suggested fasting glucose, fasting insulin and hemoglobin C.  In addition to that my TCM/Acupuncturist suggested I ask my doctor to test my liver enzyme levels (ALT and CRP) and Parasite testing.  As an aside, she also suggested I consider stopping the Singulair.  I did.  No more dizziness – yay!  It wasn’t doing anything as far as I could tell anyway and never did last time I was prescribed it, either.

All in all, I do not care if the LP and I are not enamoured with Dr. Braverman as many other patients are.  And I am sure he would  not give it a nanosecond’s thought (nor should he).  If he can help us get and stay pregnant, I will pledge allegiance.  And say only nice things.  I promise.

Okay, I may still make the odd crack about him being very much a New Yorker.  Who can resist? (I apologize to all of you New Yorkers, some of whom I am deeply fond.  I say all of this affectionately, as does the LP.  You can poke fun at me in return.  Go on, ask me to say “about” and then snicker at how you think it sounds as though I am talking about a small sea vessel.)

Curveball

Today brought me a couple of novel developments. The first, some good advice from our grief counsellor. The second, my lab results from last week’s blood test after I finished the course of steroids (Prednisone) I was on for three weeks to calm my immune system after we detected crazy-high levels of Immunoglobulin E (IgE) after my FET became pregnancy loss #8.

Let’s start with the good stuff. The LP came with me to see our grief counsellor. He didn’t say much. That’s not unusual. I said a lot. And then I got asked the question I know others don’t want to be asked – when will you call it quits? – and while I had not anticipated her asking this today, I discovered I had an answer. The answer was, like so many things on my recurrent pregnancy loss journey, tripartite.

First, if we go through the immune and HLA-matching testing with Dr. Braverman next week (results will take 5-6 weeks) and the answer is we have very little likelihood of succeeding with any more pregnancies, despite an aggressive protocol, I will (a) admit defeat and let the current RE destroy our remaining two embryos; or (b) schedule a transfer with the current RE for those two embryos knowing they won’t survive in my body but accepting that my body is better burial ground than the toxic waste bin at the RE’s clinic.

Second, we will try another FET if the tests suggest a protocol we can manage financially and practically (meaning they won’t require me to take so much time off work I’ll never be able to repay the debt I’ve already incurred and the one I’ll be incurring by seeing this new doctor) and if any required monitoring to maintain pregnancy should we be so lucky is manageable (again, we can afford it and it can be done without me having to spend the first trimester in NY – not that I’d begrudge that but it might be tricky to get my firm’s insurer to consider that a qualifying condition for disability, be it under the short-term or long-term policy).

Third, if the protocol or the monitoring is not manageable, we go revert to the options under the first part of my three-prong response. Embryos die in a toxic waste bin or in my womb, I get a lot of therapy and maybe take a leave from work to pull my crap together, and it is game over.

I guess that wasn’t really all “good stuff”. Okay, that was not the good stuff. We’re getting to that.

Our grief counsellor encouraged me to continue connecting with Azulito and my intuition (I mentioned the acupuncturist’s advice and how it moved me to tears when I “saw” Azulito after we talked about me having things to learn before living child #2 arrives). She asked if I have ever written Azulito a letter. I have not and frankly I am a little surprised by this because (on our grief counsellor’s advice) I have written many letters to our lost babies over the years (my first letter was in 2011). I don’t know why it never occurred to me to write to Azulito. I have occasionally journalled questions to the Universe that were really aimed at our spirit baby, but that is not a letter addressed to the baby I believe we are meant to raise.

I will write this letter. Or maybe several letters. And maybe a poem or two. I have made much art inspired by Azulito. But I have not written a single letter. Now is the time. I will do so.

(In case you missed it, that was the “good stuff.”)

Another small bit of good stuff: my TSH is 0.92! Yay! That may be a little low, but it’s much better than 3.17 for trying to conceive (if we ever get back to that… it seems like a distant concept at this point).

And now for the ruin-my-day stuff: my IgE levels INCREASED! They were 940 and now, after all those steroids, they are 996. “Normal” is less than 120.

To make matters worse, this morning I awoke to a right eye that was sore, weeping, red and blurry from all of the congestion in it. My allergic conjunctivitis has returned with a vengeance only 4 days after my last dose of Prednisone.

To add insult to injury, I cannot get in to see my doctor until next Tuesday. The day before the LP and I leave for NY to see Dr. Braverman. And I have to be in court bringing an application right after my appointment so I cannot go for a bunch of tests until that evening, provided they don’t require fasting. If they do, I won’t be able to go until the weekend when we are back from NY.

Sigh. I am NOT happy about any of this. I am, however, very relieved that I listened to my gut and booked that trip to see Dr. Braverman and get all of our testing done rather than waiting until these results came back. And I am proud of myself for trusting my intuition and nixing the current RE’s plan to do another FET in August during what he assumed would be a period of “immune quiescence”.  Apparently my immune system is not listening.

It has been too busy practicing its curveball.

Cautionary Addendum

Yesterday I posted about probiotics, fertility and immune system function. Upon making a further discovery today I feel compelled to caveat yesterday’s post with a link to Dr. Jeffrey Braverman’s blog post cautioning against random ingestion of probiotics without a proper immune work up.

Seeing as how I have an initial phone consult with Dr. B next week and I only started taking (non-dairy) probiotics this morning, I will be following his advice and holding off with any more probiotic supplements for the time being. I am no doctor and I’m not here giving anyone advice but if anyone else is on the fence plan and facing possible immune-related fertility issues you may wish to talk to your doctor.

Probiotics and Immune Health

I remain in a bit of a lull as I await the end of the course of Prednisone I’m on right now to calm my immune system’s reaction to the 6 pregnancies we’ve celebrated and then lost from March 2013 to May 2014 (the May one ended in early June but who’s counting?).

In the meantime, I have:

  • been working out with some increased regularity, which feels great;
  • not suffered allergic reactions to foods and pollens and all sorts of other stuff I could not even identify (I was reacting to anything and everything);
  • stopped all diminished ovarian reserve, fertility and recurrent pregnancy loss supplements except Royal Jelly, Vitamin D3, a prenatal (I use Platinum because of its lower iron content and the fact it’s easily absorbed as it’s a liquid in a massive gel cap – the massive gel cap is not so great but I can get it down so all is well), fish oil (I use NutraSea liquid and capsules kind of interchangeably but prefer the liquid when not travelling) and B-Complex (if this list sounds long to you, you should have seen the arm’s length list of stuff I took before!);
  • started a new blog inspired by the Blog Hop questions I answered – it’s about writing and art of sorts and not about seconday infertility, recurrent pregnancy loss or anything related per se;
  • been waffling endlessly about consulting a reproductive immunologist (I’ve settled on Dr. Braverman in Long Island) and if so, when and to what extent;
  • “camped” in our back yard with the Miracle Toddler (we haven’t made it through a night in the tent yet but that will happen);
  • joined the LP on the Whole 30 diet in late June and July (this was the LP’s idea, who is a now-recovering sugar, simple carbohydrate and dairy addict; I said I would take part to support him but I have not cut out soy entirely and I was already on an anti-inflammation diet so the only thing I had to eliminate was the gluten-free grain products);
  • discovered some interesting research about probiotics and immune system health that I did not previously know or appreciate, thanks to an online DE IVF friend.

I figured that the last bullet warranted some sharing of information for anyone reading this who may also have or wonder if you have immune-related fertility and/or recurrent pregnancy loss issues.  Here are some online resources I’ve discovered on the subject and a short synopsis of each:

1.  Priobiotic Bacteria Induce a ‘Glow of Health’

This interesting study involved mice who got sexy and attractive while on probiotics, displaying the “reproductive fitness” of much younger mice (as well as more luxurious fur).    The abstract boasts that “[f]emale animals displayed probiotic-induced hyperacidity coinciding with shinier hair, a feature that also aligns with fertility in human females.”  We may not get our take home babies, but we could look fabulous!

2.  Intake of Probiotic Food and Risk of Preeclampsia in Primiparous Women

This  Norwegian study indicates that women who consumed probiotics were less likely than their non-probiotic-consuming counterparts to develop pre-eclampsia.  Pre-eclampsia has been linked to immune function in pregnancy.  I also noted with interest the suggestion that “[p]robiotics have been suggested to modify placental trophoblast inflammation [and] systemic inflammation”, as well as blood pressure (all three are relevant for pre-eclampsia, the first two are of particular interest to me as I wonder whether inflammation is part of what has brought on some of our early losses in the past 18 months.  This article also talked about IgE levels being modified by probiotic consumption, which also keenly piqued my interest given that is the one diagnosis I’ve actually gotten that confirms my suspicions about an immune system gone wild.

3.  Cross-Talk between Probiotic Bacteria and the Host Immune System

This is a full-length 2007 article from the Journal of Nutrition that  reviews a number of research findings that suggest to me that, at least in 2007, the answers are inconclusive but we know gut flora can affect host immunity.  The article  concludes by saying that “the analysis of the impact of probiotics on the host immune system has entered a new and fascinating phase of research and that this effort is likely to offer novel and useful means to modulate host immunity for protection from, or treatment of, a wide variety of human and animal disorders.”

4. Immune System Stimulation by Probiotics

I was unable to get the full text of this article online but the Abstract indicates, among other things, that “Yogurt could inhibit the growth of intestinal carcinoma through increased activity of IgA, T cells, and macrophages.” Note: test subjects were non-human animals.

There are plenty more articles out there for anyone who is interested.

I will be back to update after I get my blood test results, which I expect will either be on Friday of this week or Monday of next week.  Until then, I’ll keep trudging along on my “break” from it all.

Apologizing is What I Do Best

In a former workplace I was told that I am an expert apologizer. In my profession, a sincere-sounding but not necessarily heartfelt apology can work wonders. I had never really thought of myself as issuing insincere apologies, though I have always aimed for diffusion using carefully crafted rhetoric as a means to an end (part of growing up in a household with some explosive anger perhaps?).

I’m not proud of the fact that my former colleague capitalized on what she considered to be my skill at crafting apologies to diffuse situations and garner a desired outcome to manipulate others with an ostensible apology when what she really wanted (and meant) to say was “up yours, you idiot!” Knowing she took away from my efforts an opportunity to manipulate others for self-serving ends has always made me question my own motives when apologizing – even when it’s a truly humble and personal expression of remorse. Some people really know how to ruin the simple things in life.

With that seemingly non-sequitorial confession in mind, I hope that you, my dear readers and friends, will accept this genuine, heartfelt apology for my lack of presence lately. I am sorry for not being around much and for not writing – on my blog or yours – lately. I feel particularly remorseful about not having yet prepared and posted my Blog Hop post in response to the very kind and much appreciated invitation to do so from Johanne at My Hope Jar.

It’s been a weird week-and-a-bit. I’m on new drugs (prednisone and synthroid). I’m exercising more, which is a very good thing. I have been super busy at work, which is also good, but not sleeping enough (thank you, drugs), which is not so good. Today I am feeling really out-of-sorts and wondering if I’m having some bad drug side effects (I feel super dizzy and lightheaded) or just getting used to the changes. I do not feel quite myself and I don’t recognize the person I feel like. It’s a little strange. And not quite the right head-space or capacity in which to write my Blog Hop post.

So, unfortunately, I must postpone that post and any others for now with a sincere “I am very sorry”. I miss you all and I will be back… Eventually.

Love,
Me

Hiccup?

As of yesterday, I had sorted out my dilemma of what to do with my spiralling mental health, no doubt a by-product of my spiralled physical health and the 6 miscarriages we’ve undergone since March 2013 in our pursuit of living child number two.  The decision I’d reached was to make no major decisions except to embrace life, try to live in the moment, restore my health (physical, mental and financial) and the proverbial “wait and see.” 

Today, I have had some adventures:

1. I woke up with cause for celebration – I am bleeding heavily.  The old menses has finally arrived, only delayed a few days by the 60 mg of Prednisone I’ve been on for 5 days to combat my immune system flare-up.  I’m relieved, it did not feel good to have a womb full of blood that wanted to escape and was being held captive past its prime.

2. Despite the heavy outpour of blood, I actually feel lighter of spirit (and body, thanks to the blood-letting, no doubt).  I’d swear I were miscarrying, this is super heavy bleeding.  Sorry for the too-much-information confessional.  Most of the day later, I still feel lighter of heart, but for the few forays into unadulterated rage and forehead-smacking (keep reading).  I guess hormones were not helping with the depression that was sinking in a couple of days ago when I penned my last post.

3. I lost my head and launched into a tirade at the LP for neglecting to deal with laundry in any form of civilized fashion.  In my defence, his only responsiblity was to put away what was already washed and folded and to carry to the laundry room the mountain of unmentionables he’s been hoarding (apparently for the past 14 months or so it might appear to the untrained eye)

4. I discovered that letting our two-year old practice “driving” meant my vehicle’s battery was stone-cold dead and required me calling the automobile assocation, which required me to pay over 200 clams for both the LP’s and my annual memberships because someone had neglected to pay that since it was due on March 31, 2014.  No names mentioned (hint: he isn’t two).

5.  I signed up for a new gym membership and I start kicking my own butt tomorrow.  Yay!

6.  I spent some time quietly sipping tea and looking forward to camping with the LP and our Miracle Toddler (also known as Car-Battery-Killer).  I gave or threw away all of my camping supplies when we moved a couple of years ago because the LP “is not the camping type” (read: “wasn’t the camping type” – he has agreed to give this a bona fide effort).  The Car-Battery-Killer and I ahd fun yesterday picking out some new camping equipment  as part of the newly hatched plan to live in the moment, restore mental, physical and other health and forget attempts-at-baby-making-as-lifestyle for the immediately foreseeable future. 

7.  I got a couple of e-mails with advice from our RE.  

*Hiccup!*

So, the RE was thoughtful and careful in his responses.  The key points are below:

A.  The immune flare may be the cause of my TSH more than doubling since a year ago.  It’s always been well under 2, it was 1.55 last June and it was 3.17 this June 24th, 3 weeks after our most recent miscarriage and in the midst of my autoimmune symptom hell that led to the current Prednisone protocol. 

B.  Meds to lower TSH take 3-4 weeks to take effect so the RE recommends I start now.  Okay…

C.  The RE accepts that immune factors appear to be at play for some women (present company included) in assisted reproductive technology (ART), recurrent pregnancy loss and/or infertility (primary or secondary), even though the subject is hotly contested within the ART community and has not been accepted by the American Society of Reproductive Medicine (ASRM).

D.  With the exception of some established autoimmune conditions (none of which I have been diagnosed as having) and their respective protocols, the testing and treatment for suspected immunological factors such as natural killer cells (NKa) and HLA-matching are not recommended by the ASRM and lack convincing, reproducible data.

E.  Typical “immune-modulating” interventions include intra-lipid infusion, IViG and steroids.  Again, the RE maintains, these lack convincing, reproducible results and are not recommended by the ASRM.

F.  Although in his personal opinion, immune factors “probably play a role in some cases”, he acknowledges that “our ability to identify and treat is lacking.”  This will likely change in the coming years, but that does not help me and others like me now or in the immediately foreseeable future.

G.  The RE sees a potential “window of opportunity for embryo transfer” of one or both of our remaining two frozen blastocysts “shortly” after I conclude my current course of Prednisone (I should be done treatment in the third week of July), when hopefully the antibody levels (IgE) have returend to normal.  I asked for clarity on the RE’s definition of “shortly thereafter” but the best I got was a sense of it being in the month or two after I end the steroid treatment (and that’s more my inference than him spelling it out).

H.  The RE is open to using intra-lipids pre- and post-transfer (if successful) and a sub-cutaneous injection of hCG before transfer but NOT further use of steroids during the transfer cycle.

I.  The RE is also not in favour of using an intra-uterine injection of hCG at the time of transfer on the basis that it is primarily aimed at assisting women who fail to develop an adequate uterine lining (which is not my issue, he said) and because he is concerned about placing excess liquid in the endometrium because “it may be a conduit for embryo movement.”  There are some docs who suggest that the intra-uterine injection is also targeted for women with known or suspected immune issues, but I have not raised this and frankly the research on that appears limited and as our RE would say, “lack convincing, reproducible data”.

What does all of this mean for my plan of taking a break from all of this baby-making madness for the rest of summer and maybe longer?  I have no idea.  Do I agree with everything he’s said?  I don’t necessarily disagree, I have some anxieties but I’m letting them go gently right now.  And I plan not to think about the what-ifs beyond having blocked off dates in the LP’s and my respective work calendars in case we decide to take advantage of the “window of opportunity”, should my gut tell me it’s the right thing to do in one of the coming few months.  For me, right now, that is plenty.  I am not committing to any dates right now.

Rather, I plan to press on with the plan to live and rebuild our lives, be in the moment, and go camping (first in the backyard – we need to break in the Miracle Toddler and possibly the LP, after all).  I also plan to call my doctor tomorrow and accept her offer to prescribe me a low dose of thyroid medication to bring my number back under 2.  I can live with that.

It is time to live and to be.  Alive.  Alone.  Together.  Here.  Now.  And whatever else happens?  Well, it will happen as and when it is meant to happen.  This hiccup is not derailing my plan to embrace the life we once had and enjoyed.  I want that back, no matter what else happens.