Triggers, goodbyes and gratitude

Like a tornado she came to me. Thrashing through my sleep. Piercing me with grief. Hurtling debris strewn in her wake.

She came to me one year and 10.5 days from when she left, her heart arresting for the third time as I sped to reach her, to hold her, to share a last farewell.

I didn’t make it in time.

Her heart arrested. Again.

The phone rang.

You lost her, didn’t you?

I am so sorry.

She didn’t make it.

I didn’t get there in time.

She left behind a hole.

A cavity I cannot fill. A grief I cannot swallow. A guilt that rears its head and reminds me, in the middle of the night, how I failed her. How I fail me.

The night before she awoke.

She heard my voice and rallied. She worked at breathing on her own, replacing the machine’s labour.

I stayed until she fell asleep. The middle of the night. They let you do that in intensive care if you’re a paying customer.

I left her intubated. She could not breath on her own once she fell asleep again.

The next day her heart arrested.

Again and again.

Until it could not.

I didn’t make it in time.

She didnt make it.

And so my day started. In the middle of the night.³

Then I read what it takes to make an abuser go away.

My chest ached around my racing heart. I wanted to throw up. I could not breathe on my own. There was no machine to do it for me.

It costs a great deal to make an abuser go away. The bounty is too high.

I miss her.

And the pieces of me the horror that took her stole from me.

Go away, bully liar manipulative fuck. I stood alone, voting against you, motioning you exit.

I am so grateful.

So grateful this week is over.

So grateful I have other memories, happier memories, of her.

I remember you

Little light, tiny boy, you were my first. You were supposed to be born in early August. You left us on New Year’s Day instead. I think about you often. As you know we have given our second living son your first name as his second. You are buried in a planter in our front yard. Remember when I dragged that heavy thing, weighing almost half as much as I do, from our old home to the one in which we now live? I remember you. And my love for you lives on always, not only on days like today dedicated to infant and pregnancy loss. 

Little spark, you were with us only briefly and some doctors said you didn’t count. But you did. I remember you. You were wanted. You too were loved.

Miracle Toddler, you broke the spell. Notwithstanding every complication my body threw in your way you triumphed. You have lived through the six losses that followed you. And the one who survived. Your little brother. You were my first miracle who lived. I will love you forever and in all ways. 

Tiny gift, you were welcomed with such hope. My heart broke with a newfound anguish when you disappeared. Too soon. Forever too soon. I remember you. 

Little bean, I was so excited to know you. I dreamed of holding you. I dreamed of you being my best holiday gift ever. But then you too were gone. Too soon. My heart died a little more with your passing. 

Oh, Mandy, then there was you. You were our holiday and special occasion baby. Conceived on vacation. We first saw your heart beating on my birthday. I watched you grow and knew you would be my beautiful baby girl. You were so brave. You fought hard. But it was not enough. I cried begging the doctor to let me see you one more time, fearing you too had slipped away. Knowing something was wrong. And something was. So dreadfully wrong. The Miracle Toddler cried with me as I mourned your passing. Time and time again. I am so sorry I lost you Mandy. I remember you. I always will. You will forever be the daughter I will never get to hold. 

Tiny button, you were our first IVF baby. Your time with us was brief but our love and longing for you deep and plentiful. I remember you.

Dearest whisp, you were with us for Valentine’s Day and the weeks that followed. And then you were gone. Just like that. I remember you. 

Wee Hope, you were my Mother’s Day baby. I traveled far, yearned long and worked hard for you. I did everything right. I thought it would be enough. How wrong I was. You taught us so much. You are missed. And I remember you. 

Little E, you landed in my womb alongside baby Azulito. Little Blue. He lived. You did not although you tried and for that I thank you and, little E, I remember you.

Baby Azulito, you are finally here. You beat every odd and overcame every obstacle my immune system erected in your path. I could not be more grateful. I will remember you in all ways and forever. 

Though my heart is heavy, my eyes burning and my cheeks stained as I write this, little loves of mine, I know I am fortunate and filled with gratitude for the two of you who fill my arms, day and night. I love each and every one of you. And I remember you even when and even if virtually everyone else has long forgotten most of you. 

October 15, 2015 is a day dedicated to pregnancy and infant loss remembrance and awareness where I live.  I typically have a hard time writing on days like this. My feelings are complicated and it is difficult not to feel guilty when I think of others still struggling and facing today and everyday with empty arms. Yet my lost loved ones deserve to be remembered. And so I write. To all of you reading this who are struggling with infertility and or  surviving pregnancy or infant loss please know my thoughts and compassion are with you. 

A Good Snow Day Makes Short Work of the Best-Laid Plans

I was supposed to be flying to New York Monday night for immune panel testing to monitor how my body is responding to this pregnancy and to meet with and have another ultrasound done by Dr. Braverman on Tuesday. On Sunday night those plans changed.

I am now booked to fly to NYC on February 5th and come home on the 6th. I am scheduled to see an Immunologist at home on February 2nd and a Perinatologist on February 4th. Next week will be a week of medical appointments. I am more than a little anxious but trying to have faith that things will be okay. Somehow. Someday.

Today I got the report from last Wednesday’s ultrasound. Mostly promising news except the doctor diagnosed placenta previa. This could change as I was only 17 weeks then. I hope it does. That’s one more potential source of complications we could do without.

I am looking forward to dropping from 60 mg to 40 mg of Prednisone after Wednesday. I was thinking I would taper to 50 mg then 40 mg but Dr. Braverman in the past said I could just drop. Anyone with Prednisone experience who has thoughts on this please consider sharing. I would be most grateful. I’ve always tapered in the past.

I have been doing a great deal of soul searching over the past few days. I am not ready to write about it but I mention it because it feels important and I have shame about not being a good partner to the LP over the past two years and especially the last year of our lives. I need to own that feeling and my shame and give it voice so I can start to look more candidly at where I may have resistance and where he might to this dream we have been chasing for so long. I also want to heal the wounds that this journey has left on each of our hearts. To do that I need to look at where things may not be as they ought to be. Cryptic, I know. Bear with me. This stuff is not easy and took me a little by surprise (but was no surprise at the same time, if that makes any sense?).

On that note, I thank each and every one of you for being so kind and generous and loving in response to my last terrified post. Your compassion, support and encouragement mean more than I will ever be able to convey adequately. Thank you. So much.

Our Positive Serum Screen for Spina Bifida

Almost immediately following my last post, I saw the substitute doctor instead of my usual family doctor who has been managing my prenatal care to this point as my own doctor was (and still is) off work sick. That appointment changed our lives in ways I am still unable to unravel completely.

I began the doctor’s appointment noting I had four things I needed to mention and not forget. The doctor said “okay, tell me those and then I’ll tell you why I called you in.”

What? Nobody told me he had called me in. My doctor’s nurse told me my own doctor didn’t want me to miss a prenatal appointment, nothing more. Why didn’t someone warn me there was something that a doctor wanted to discuss so I could do something other than attend this appointment alone and be blindsided by completely unexpected bad news (because they never “call you in” to celebrate your innocuous test results, do they?).

The short version is that I had tested positive for elevated alpha-fetoprotein (aFP) in a maternal serum screening test, meaning I “tested positive” for a “relative risk greater than the comparable population” for Spina Bifida. For anyone of you who have had screening tests you will know that a critical piece of information when reviewing results is what that “relative risk” is – i.e., where your numbers lie relative to that comparable population. The doctor breaking this bad news had no idea what those numbers were because my doctor had not shared the actual report or results with him, just that he needed to get me in and obtain my consent to refer me to a perinatologist as soon as possible given I was am already 17 weeks and, if the screen is correct and the case severe, we may be facing some very difficult decisions.

I was angry that this doctor was behaving so irresponsibly – giving me potentially devastating news with no particulars to allow me to assess how bad it could really be. I told him as much in no uncertain terms. He apologized profusely and it occurred to me that this was not his fault and shooting the messenger was accomplishing nothing. This was my doctor’s fault. She screwed this up. She had those results last week and could have called me then. She could have given him the results. He was accountable for none of that and trying to do the right thing in very unfortunate circumstances. I let him off the hook.

And then I began to cry. Uncontrollably. He seemed surprised and utterly ill-equipped to manage this new development. [Remember, I said he looks like he is in his early 20s. He isn’t but he is very young and prenatal care is not his area of preferred practice – he could barely manage the Doppler, for heaven’s sake.] He said “this does not mean your baby has Spina Bifida. It may not. We need to do more testing to be sure.” I explained that I understood that but what he did not know about me and this pregnancy is that I am already very high risk due to immune issues and that this is not my first bit of bad news to absorb into an otherwise uneventful pregnancy; it was one piece of incomplete, terrifying news that had suddenly been heaped – without warning – on top of a hundred other stressors in a very stressful and risky pregnancy.

Then I proceeded to fall apart completely all the while asking my various responsible medical questions informed by my years of practicing medical malpractice defence, my years of recurrent pregnancy loss and my recent foray into a lay person’s grasp of reproductive immunology. The doctor was of limited assistance and just kept circling back to unhelpful explanations of what “relative risk” means and the fact that only the perinatologist would be able to answer my substantive questions so I needed to see him or her even if we ultimately decided not to do amniocentesis or consider termination regardless of outcome. I asked for the referral, was told there is no way of knowing when we will get in to see this person but that presumably it has to happen before I am 20 weeks pregnant (I’m 17w1d today by gestational age) because 20 weeks is the cut-off for legal abortion (termination for medical reasons in this case).

I really hate it when doctors (and lawyers) faced with terrible circumstances and options for their patients/client lay out their next steps and then say “does that sound fair?” This doctor did that. Did it sound fair? Are you freaking kidding me? None of this sounded fair. Have the LP and I not suffered enough? How can this new development or anything that one might propose to do about come across to me as fair?

I stared blankly at him for a moment, as if to consider whether he had really just asked that question. “Does that sound fair?”

There are hills on which to die. The fundamental injustice of “this” – all of it – in that moment, with that complete stranger, was not one of them. “Sure”, I said.

Then the doctor left me in the examining room, lying on the examining table ready to have my fundal height measured and fetal heart rate checked with the Doppler, while he went looking for the Doppler, saying he would be right back. The nurse came instead and said it would be a few minutes, they could not find the Doppler. Noting my state, she asked if I was okay. This was a nurse I’d never met before and had to educate upon my arrival about the fact that I needed to have a urine test done to check for proteins. I said I was not alright but thank you. She asked what was the matter and I said I had just been given some very scary news. She asked if I needed anything, I said no (another question that’s meant to be kind but really, how does one answer that? “Do you have any extra magic wands handy?”) .

The nurse left. I waited. And waited. And finally, I called the LP to ask him to be near his phone so I could call him after the appointment was finally over. I did not plan to tell him right then what the doctor had told me but he could hear in my voice something was very wrong and I could not lie. I said I could not talk, the doctor would be back right away, but I promised to call right afterward.

When I spoke with the LP in more detail later – as I sat breaking down completely in the clinic’s parking lot for over an hour until I felt safe to drive – I told him the doctor was referring us (me) to a perinatologist and that I also got a requisition for an ultrasound to see if we could identify any abnormalities already even though it was at least a week early for an anatomy scan. Right away, there was discussion of termination for medical reasons. I said I could not go there right now, I knew it was a possible reality but I did not know enough about the four types of Spina Bifida, the test results, the realistic chance this could be a false positive, and the options for life if we had a child diagnosed with Spina Bifida who would not have the most severe form or forms to make any kind of informed decision and therefore I did not want to go there right now. The LP is a “futerer” – always envisioning the worst when bad circumstances strike – and I tend to do that too sometimes so I am mindful of the need to put on the brakes when things like this happen and they matter a great deal.

Tuesday was a nightmare. My head did not stop pounding despite Tylenol for the next 14 hours. Many tears were shed and as many stifled. Anxiety reached a new high. Wise fellow reproductive-immunology patient friends and my common sense finally led me to ask Dr. Braverman for his and/or his research team’s help. I also searched my soul for my lines in the sand about TFMR and raising a child with disabilities the extent of which would likely not be known or known fully until after birth as older parents with a living child. I thought about where those lines would be drawn for me, irrespective of where the LP might want them drawn. I asked God why this was happening. Was this a test? I came to some decisions that I am not ready to share here and I came to the conclusion that some part of me needed to engage in this exercise of love and pain – and a whole new scheme of loss – to bond with this baby, no matter what happened.

Wednesday started out poorly. I had hardly slept, I was awash with anxiety, I had to give a presentation and attend two others for the two hours preceding the ultrasound and I had not had the presence of mind to complete my preparation for my presentation to the extent I would have liked. I wished the ultrasound was first thing in the morning (the afternoon was the first available appointment they had). The ultrasound technician said “We have to stop meeting like this” in an effort to lighten the stifling air in the room when the examination was about to begin. I pretended to laugh. I wanted to curl up and die.

The scan had several component, was done by two different technicians and took almost 90 minutes. They could not tell us anything substantive and we did not ask because they had been so kind and we knew their prescribed limitations. I asked if we could speak to the doctor who would be signing the report at the end, explaining that my doctor is still away sick for an unknown time and we are clearly very anxious given the positive serum screen result. The senior technician who had done our Nuchal Translucency and one other scan in the first trimester said yes, he would speak to the doctor and they would both come back and speak to the LP and I after everything was done.

The doctor – covered in a bright red custom-made lead apron with the Spider-Man logo on his chest – said that although the scan was early for an anatomy and anomaly screen and although baby had been very active (making things more complicated and take longer), they could see no evidence of abnormalities with the spine or any other structures or organs. The exam was not perfect but they got good images and were able to visualize the important components they were looking for. He recommended that the exam be repeated in a week when I am 18 weeks and said that if something showed up or was questionable then, he would refer me to a perinatologist. I said we were already waiting on a referral to one and he said that was probably wise even though he saw nothing to suggest the positive screen result was indicative of Spina Bifida. We are booked to have the next scan at the same clinic on January 29, 2015 (next week Thursday).

On the subject of contacting Dr. Braverman. As much as I struggled with his demeanor and ego in all of our early interactions, I have nothing but kind words to say and tremendous gratitude for how he handled my email about this screen result and my request for any research he or his team might have about possible immune explanations for the elevated aFP, should there be no evidence that our baby actually has Spina Bifida on the then-upcoming ultrasound. He asked me to give him a day to respond substantively then did his own research between 10 and 11 pm on Tuesday night and sent me the results and his analysis and a very kind and reassuring note saying my anxiety level (emotions aside) should remain low, he believed this result was a function of my systemic inflammation and possibly high prednisone levels and more likely than not to be a false positive. I will write more on this in a future post and the research in particular in case it may help others. For now, I owe my great thanks to everyone who has been here for me the past few days. Thank you.

I am so grateful. For so very much. We are not out of the woods, but I am so grateful we are still walking through them.

Some Truly Great News… Finally!

* pregnancy mentioned *

It is with immeasurable relief that I can finally say that our MaterniT.21 test results have come back with a “Normal” result. I nearly burst into tears of joyful relief when Dr. Braverman announced the results this morning at my appointment with him. As he said, one more major hurdle crossed.

Our ultrasound this morning also brought reassuring news. Azulito/a is still measuring ahead but was too big to get a reliable crown-rump length (CRL) so Dr. B took measurements of the femur, head circumference and abdomen. The latter two indicated 13w6d and 14w respectively while the femur measurement indicated 13w1d. I’m happy with all of that.

Make that ecstatic. My relief is visceral. Palpable. I feel it every time I inhale. I had a great deal of anxiety about how this ultrasound would go since I stopped the Neupogen as well as the progesterone and estrogen supplementation last week at 12 weeks. Even if my cytokines and chemokines may yet be acting up at least baby is continuing to grow and look absolutely freaking fabulous.

Did I mention my relief is palpable?

I am to remain on the 60 mg of Prednisone until my two weeks are up then drop down to 40 mg and monitor symptoms. If they come back we will bump it up again but then we need to taper to nothing by 20 weeks so we are well clear of the 24-week mark where I won’t have the enzyme to prevent that drug from crossing the placenta anymore. I will stay on 40 mg of Lovenox for now and if today’s test results indicate throughout the rest of this pregnancy (God and Universe willing). The Intralipids will also continue biweekly until further notice or an indication that they are no longer needed when today’s immune monitoring blood test results come back in about two weeks.

I asked Dr. B about monitoring for the third trimester complications associated with my immune conditions. He would like my Ob to schedule ultrasounds at least every four weeks starting at 24 weeks to check baby’s growth and doppler blood flow levels. If all results are normal we carry on every four weeks. If not there will need to be more frequent monitoring. I am also to watch for headaches and upper right quadrant pain (symptoms of preeclampsia or toxaemia) and report any to my OB and Dr. B immediately.

I have not yet seen my OB as I have chosen to remain under the prenatal care of my family physician whose practice is focused on conception support, early prenatal care, postnatal care and pediatric care. She is the Miracle Toddler’s doctor too and has seen me through all but my first two of ten pregnancies. She has left it up to me when I have her transfer my care to my OB, who heads high-risk obstetrics at our local women’s hospital (where the Miracle Toddler was born). I see her tomorrow so I will discuss this new advice from Dr. B with her and see what makes the most sense.

In other news, I apologize not updating sooner. I actually wrote a post a few days ago so that none of you would be worrying whether I was alive and still functioning. WordPress had that post for lunch. I was so short on time, energy and patience that I could not replicate it.

Please forgive me for my delinquency. The past two weeks have been unbelievably busy and rather anxiety-laden for me, which often prompts me to shut down somewhat. I hope you were not worrying. Please know how incredibly grateful I am for all of the love, encouragement, hope and support you have shares with me. You are the best. I love you guys so much!

On that happy sappy note I wish each of you a healthy and peaceful holiday season and a truly empowered and dream-fulfilling new year.

Betas #3 and #4 at 11dp5dt and 13dp5dt

* pregnancy mentioned *

How’s that for a sexy title for a blog post? For a woman who hates acronyms I have taken to using some cryptic form of them as titles. Call me tired.

I know how anxiously I await news from those of you I care about deeply so even though I’m incredibly exhausted and really aching to go home, I am writing this post in gratitude to all of you who have egged me on (pun intended), believed when my hope flagged and shared such incredible love, kindness and support with me.

Below are my results on Saturday (11dp5dt) and Today (13dp5dt), both of which I only got this afternoon (it was a long weekend, let me tell you).

Beta hCG: 405 U/L
Progesterone: 190 nmol/L
TSH: 0.83 mU/L (I’m crediting the Intralipid IV last Thursday with bringing this back down from the jump it did right after transfer)

Beta hCG: 976 U/L
Progesterone: 214.7 nmol/L
TSH: 0.93 mU/L

I will call tomorrow to book a first ultrasound at the end of next week around the same time I go back to NY for my next Intralipid IV. I have found out it’s likely impossible for me to get Intralipids back home. And it’s the only drug my insurance is also not going to cover (because outside of a couple of fertility clinics far from my home it’s only ever administered in hospital in Canada and only to patients who are unable to consume solids). I am not even complaining about this. Small price if this pans out.

I am hoping and praying this pans out. Thank you all for *everything.*

5dp5dt: Genuine, if Surreal, Gratitude

I feel sick. I am exhausted. I have never felt more grateful to be both wiped out and ill-feeling.

Yes, I peed on things. Heaps of things. Yesterday and today. I said it first: I’m incorrigible. I knew this would happen. So far, there are some pink lines on my horizon. They appear as lines might if I were not wearing corrective lenses, was suffering from serious sleep deprivation and intensely hungover. In short, they’re faint and blurry but definitely there. On four different brands of pee things.

I am debating whether to use a standing requisition for beta-hCG I got from my family doctor in relation to one of the 6 failed pregnancies I’ve had since the start of 2013. They’re good for one year and I’m pretty sure it’s still valid but I will have to check. If it is, I am tempted to sneak in a beta today or tomorrow so I can have some confidence booking a flight for Friday, when I’ll need my next round of Intralipid and to see Dr. Braverman in order to get a new prescription for my meds and the immune testing through Reprosource to determine if the current dosing is where it should be.

I have not told Dr. Braverman yet but I probably will in an e-mail at some point. Why not? It’s not like I haven’t been high maintenance to this point. Why stop now?

My plan had been to ask Dr. Braverman if there is any benefit in trying to get the labs done sooner rather than later (i.e, Monday or Tuesday as opposed to Friday). I think it will take at least 24 hours for any blood drawn here in western Canada to get to the East Coast where Reprosource is so maybe a few days does not matter. Maybe I do not need to e-mail him. I don’t need to make that decision now as I ruminate on feeling grateful for feeling like crap.

I am not as excited as I would love to be about these crazy-early positive home pregnancy tests. I’ve been down this road 9 times before with very unhappy endings in 8 of those 9 cases. This is pregnancy number 10. I’ve hit double digits. I hope I do not need to go any further. Yet I know this could all end in a matter of days or weeks. Only time will tell.

Suddenly time is ticking by at an impossibly slow pace. Its pace is measured by the intervals between when I pee on things. What a surreal life I have created for myself. What strange things for which to be grateful. Can you hear me now? A sampling for your reading pleasure:

“I get to pee on something in 1.5 hours.”

“I feel like barf. Exhausted barf. Not at the time in the barf department. All the time in the tired department.”

“Thank you God and Universe for your countless blessings.”

I have not booked a flight to New York yet. I don’t know when I will but I hope I can find enough proof that this is progressing to do so soon. Those things get more expensive every hour I wait it seems. But cancelling them is even more expensive. Thus I wait.

This is me at 5 days past my 5-day (and 6-day) transfer. I am scared out of my tree. Yet I cling fast to hope and faith in the messages I have received from Spirit and in my gut feeling that this is meant to have a happy ending somehow, someday. At the moment, it all feels intensely surreal and hard to believe (or maybe hard to trust). For that reason, I am doing all I can to recall the calm, zen-like state I was enjoying before all of this peeing, fatigue and nausea began. Deep breaths and one foot in front of the other.

To you, my friends and fellow bloggers, I extend my deepest thanks for your support and warmth in the days past and those to come. For you – like the nausea and the exhaustion – I am truly grateful.

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.