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.