New Year, New Milestones

The smallest light of my life (his mega-watt smiles could win over the stiffest of the stiff upper lipped) baby Azulito said his first word today according to his Daddy. 

What word you ask?

Mum. 

I was sceptical at first but have decided to roll with it. 

He is also moving – albeit incrementally and very slowly – as he has figured out how to crawl. He is still pretty wobbly and not getting very far before he face plants on the rug in exhaustion. Still. Movement is movement. 

Happy New Year, baby A!

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. 

11:11 – A divine time to meet our spirit baby

At approximately 4:00 a.m. on Monday, June 8, 2015 I woke up panicking about completing everything on my to-do list on my last day at my job before maternity leave.  Now that day would be amputated by the LP’s emergency eye surgery so the panic felt even more immediate. Time to get moving. But first I had to pee. Off I trundled to start my day. 

From that moment on, nothing about June 8th went as planned. 

First I discovered that I was awash with blood. It looked watery. I rationalized. I hoped it was my mucus plug and that this would not spell danger for baby Azulito/a. Nevertheless, I ran to where the LP was sleeping. 

“I’m bleeding!” I proclaimed. 

A flurry of questions and answers followed. What does that mean? What do we do?  Should we go now?  What do we do with the MT?

I grabbed the Doppler.  Baby’s heartbeat was slower than usual but just at the low end of normal range (120). I checked again. Still bleeding but definitely mucous-filled and not as much as earlier. We made a plan. 

The LP got up to shower. I went to work and made copies of the things I needed to finish, left the originals behind, put notes on files for my assistant to address in my absence and headed home. 

My mouth felt as though I had swallowed a field of cotton. I desperately wanted a drink. My nausea was ramping up, too and I felt as though I might faint. The LP was showered and lying in bed with the MT. He suggested we wait half an hour so we could drop the MT off early at his dayhome. I checked the baby’s heart rate on my Doppler again. Still low. Harder to find. But still there. 

By this  time the blood had turned real. Bright red blood. A steady stream of it. This was no mucus plug. 

I was scared. 

I called our son’s dayhome operator and explained. I had clearly woken her up. She said we could come anytime. We left the house with the MT in tow, dropped him off and headed to the hospital for our fourth unplanned trip to labour and delivery for assessment. 

The LP was scheduled to be admitted for his retinal reattachmeny repair surgery at 9:00 a.m. At 8:35 a.m. the Resident who had assessed me and baby A said that she was going to call my OB to confirm whether we would be proceeding with the cesarean the following day as scheduled while monitoring my bleeding (which had not stopped but was slower and stable) and baby (who speared unshaded by any of the morning’s mayhem) or having the cesarean Monday afternoon. 

Off to eye surgery trundled the LP.  He would return and wait fit my surgery that afternoon or as originally planned on Tuesday afternoon. 

About an hour later the Resident came back and told me that my OB wanted us to proceed later that day.  I then met separately with the Anesthesiologist and the Resident Anesthesiologist.  The anesthesiologist decided that it would be prudent to give me hydrocortisone in my IV during and after the surgery given that I was only able to wean off of the prednisone about three weeks ago. He wanted to make sure that if my body could not produce enough its own court is all I was covered as well as using the hydrocortisone to reduce the likelihood of me having a severe drop in blood pressure because I typically do with anesthetics. 

The Resident came and asked me some more questions by which time it became clear to me that plans had changed. I naïvely asked what time I was expected to be heading over to the operating room (OR). 

His answer? 

In about 10 or 15 minutes.  It wasn’t even 10 a.m. yet. 

The LP was nowhere near to being released. I didn’t even know if he was in the OR himself. I must have looked stricken as the Resident asked if I was scared. I said no but my husband was not there. I explained what had happened. He took the LP’s name and which department he was in and called down to tell the folks in that area what was about to happen. 

Unfortunately, the message relayed to the LP as he lay in pre-op awaiting surgery was that I was having an emergency section imminently and that while he would be permitted in the recovery room he would not be allowed into the OR for delivery. This was not true. I was still scheduled to be using spinal anaesthetic unless something went wrong during the delivery. 

Upon entering the OR I began to cry. Not sobs. Not whimpering.  Simply, silently a steady stream of tears trickled out of each eye and down my cheeks. The doctors and nurses thought I was scared. The Resident Anesthesiologist explained I was sad that the baby’s father was not there because he was having emergency eye surgery. 

An OR nurse came over, held my hands, leaned her forehead into mine and just sat with me.  She stayed with me while the spinal was administered as well. She held my hand as my arms were outstretched beside me and strapped down. I am grateful for her kindness. It made such a difference. 
I did not know about the miscommunication to the LP until much later. Nor did the Resident Anesthesiologist. There was a delay after I was taken to the OR while we waited for matched blood products to arrive given my risk of placenta accreta. Every time the OR door opened I looked up hoping it was the LP.  It never was. 

Once it was clear that the LP was not going to be with me I tried my best to focus on what was about to happen. I would meet our baby face to face for the first time very soon. 

I won’t bore you with the weirdness that is having a cesarean section using a spinal other than to say it is a very strange sensation to feel strong pulling, pushing and pressure going on in your body without any pain or clear awareness of what is happening at each step of the process. Very strange. 

Finally my OB said my name and announced that we had one good looking baby. Loud clear cries ensued immediately. I felt myself inhale for what seemed like the first time in ages. 

“Thank you” I said. And the tears began anew. A steady, silent stream. 

My OB told the nurses that I wanted skin-to-skin contact with the baby. This is a new intiative where we live – skin-to-skin in the OR rather than only in recovery or on post-operative units though it’s been introduced elsewhere much earlier – and the nurse who was looking after our baby didn’t know what to do at first. Eventually she sorted it out and baby Azulito was on my chest as I was stitched (stapled) up. 

Our beautiful baby boy was born at 11:11 a.m. on June 8, 2015.  

I am in love, rivalled most conspicuously in my affections for this new little man by his older brother, the Miracle Toddler. Even the nurses who saw them together on that first evening after Azulito’s birth commented on how much the MT loves and wants to be part of caring for his baby brother. One said she had never seen a boy be so engaged and affectionate about a new baby. I generally believe that the MT is a pretty special kid but some days life mirrors back to me just how special. 

Last night the LP was holding Azulito. He looked up at me and mouthed the words “I love him”.  After all of the worry, after all of the fear, after the painful moments when – at sea with those worries and fears – the LP had questioned us doing this reproductive immunology cycle to have this child, had lamented the seemingly endless struggles and suffering to which he saw me as having been subjected, I needed those three words.  I need only notice the tears and snot streaming down my face as I write this to know how much I needed to hear those three words.  I believe that the LP and Azulito did, too. 

Azulito and I are still in hospital because the wee one has had typical pre-term troubles regulating his blood sugars. I wanted to exclusively breastfeed but if we want to get out of hospital this week and I want Azulito to be well (this goes without saying), it has now become apparent that I must supplement with formula after each time I nurse. Without that, his sugar levels are continually below the cut-off and on a few occasions have been quite low despite my nursing him every 2-3 hours. 

This has been upsetting and saddening but I am trying to keep myself together about it.  My hope is that in not too long my milk will come in (it takes longer with cesarean deliveries apparently), Azulito will mature a little more (he was born at 36w 5d so only slightly premature as term is 37 weeks) and things will progress normally from that point. 

The little dude is already trying to lift his own head, was a healthy length and weight and has a full head of one-inch long hair (!?!). Wicked recent heartburn explained or is that an “old wives’ tale”?

For safety and privacy reasons I do not wish to discuss on this blog I will not be posting pictures or the names of baby Azulito or the Miracle Toddler. If you have ever had personal contact with me or otherwise know me “in real life” please e-mail me either at spirit.baby.please.come.home@gmail.com or one of my personal emails if you know them. I will share more details and photos there if you promise not to blow my cover. As all good superheroes know, our secret identity is one of our most valuable assets. (Wink, wink and a nod to Disney for that thought from The Incredibles.)

From the deepest well of love and gratitude on my heart to each of you who have followed our journey, laughed with us, held my heart when it was aching and shared my joy when it flowed over, cried with us and cheered us on:  Thank you.  So much. 

Revelations

It has been a while since I have updated, in part because nothing really eventful has been happening with this pregnancy – a blessing for which I am tremendously grateful – and because a great deal has been happening in the rest of my life.

 

My most recent ultrasound was almost two weeks ago at 25 weeks.  Baby was measuring on track and was estimated to be weighing in at 2 lbs 2 oz (give or take 5 oz).  For 25 weeks that sounded pretty good to me.  The technician spent considerable time trying to show me why it was not possible our baby has Spina Bifida. I wanted to tell him that I’ve moved on and did not welcome an opportunity to relive the stress that the positive screen for SB caused but I kept my mouth shut, mostly because I could see that he meant well and was trying to be reassuring.  He cross-examined me about why I was being monitored, however, compelling me to reconsider my compassion for his supposed good intentions. 

 

Why do technicians feel the need to grill me about my medical history and my understanding of why I am having extra ultrasounds when they have my chart and invariably say “yes, I read that” when I say we have had many pregnancy losses (8 in total and I hope that ends the count)?   This has happened to me four times during this pregnancy so far, all with different technicians (so it’s not just one sadistic creature doing this).  The second time I actually asked if the tech had read my chart.  She said yes, but she wanted to know what I understood.  Next time, I am not going to play this charade.  If you want to know why I am there, ask the referring physician and stop making me recount my medical history, my loss history, my immune issues and the issues with my placenta. It’s in the chart.  Read it, shut up and do your job.  

 

Funny, I did not realize how bitter I am about the cross-examination routine until I started describing it here.  At least now I know that it upsets me and I will be drawing a very clear, firm boundary should it happen again.  You hear that Universe?  Harumph!

 

Back to the medical update: The placenta is still located both in an anterior and posterior position which means the Placenta Previa diagnosis remains.  The tech thought maybe the placenta had moved but when he showed me where it was in relation to the cervix, it looked exactly the same to me and he was really guessing from reading my chart rather than comparing images from the prior scan to the one he was doing.  He also said that blood flow to the placenta does not change once it’s measured around 20 weeks (which is not true) so I am not putting much stock in his thoughts about the Previa issue when the OB reported it to remain an issue.

 

I am still on Prednisone but have weaned down to 7.5 mg and on Thursday I will drop down to 5 mg and next week Thursday to 2.5 mg.  I will be entirely Prednisone-free in two and a half weeks.  Yay!  I may have a sip of wine to celebrate!  I have three more Intralipid IV treatments and after that the only medication on which I will remain is Lovenox (enoxaparin sodium).  Yay!  I may have a second sip of wine after the Intralipid treatments are done.  You pregnancy purists, pretend you didn’t read that.  

 

As I hover over the threshold into the third trimester, I must confess that I am ready for this pregnancy to end.  Not soon – please do not let this baby come before 34 weeks, Universe, please – but when it ends (which won’t be after 37 weeks in any event).   This has been the single most stressful and exhausting period of my entire life (more stressful than trying to work, complete law school and visit/care for my dying mother; more stressful than articling while escaping a violent partner and rebuilding my life, more stressful and exhausting than the various traumas I experienced living abroad).  I read some of my blogging sisters’ musings about missing their babies being in their wombs or not wanting their pregnancies to end on one level and I feel both sad (because I think it evidences something I am clearly missing out on) and totally unable to relate.  

 

I do not want to come across as ungrateful.  Yeesh, writing that sentence alone made my eyes flood with tears.  I am more grateful than words could ever convey to have carried this baby as far as this and to hopefully be birthing this baby in the next couple of months.  I *love* feeling Azulito(a) kick and wriggle and perform Jujitsu inside of me.  That said, I would trade the in-my-tummy gymnastics for a healthy baby in my arms and an opportunity to get my body back, try to figure out my immune system and get it back onto some kind of healthy plane of existence again, and be on leave from work spending time with the Miracle Toddler and our new addition free from the current daily anxieties about everything that my crappy placenta and my zealous immune system could cause to go wrong with either baby or me, the aching hips and back and neck and shoulders and head, the daily blood pressure checks and injections, the crazy pregnancy dreams, the anxiety of being completely underproductive at work for reasons beyond my control, etcetera, etcetera, etcetera.  

 

As deeply grateful as I am, I have had enough of this roller coaster ride.  I will happily disembark when that time comes (which hopefully is not for at least 7 more weeks!).

 

In other news, the LP and I are in counseling (brought about in large part by the stress and other side effects that the last 2 years have caused). I am glad we are getting help.  I am not ready to blog about it here and may never choose to do that, but I am feeling good about this move and grateful that the LP is taking part voluntarily despite the fact that the issues we are examining dig to really deep, very challenging places in him.  I see this baby as having been and being a catalyst for tremendous change not only in me but in my marriage and in the LP.  The Miracle Toddler will also be facing great big changes soon and I hope he can find it within himself to still say “I love your baby, Mommy” then as he does now (though I will forgive him if from time to time that’s simply too much to ask of a toddler).  I suppose when I envisioned Azulito(a) communicating that s/he chose us because of something to do with “education”, I did not imagine the learning would be so profound this early.  At least I know I was not wrong in interpreting the message that way.  This most certainly has been an education.  And then some.  I have a feeling there is plenty of learning yet to unfold.

 

On that note, I want to thank each of you who read this blog for your support, interest, encouragement, love, kindness and – to those of you who share them, your words.  I will be forever grateful and hope that whatever I may bring to you is some compensation for the time and energy you have shared with me.  I wish you all the best, always.

When Things Go from Sad to Worse

* pregnancy and fear of pregnancy loss mentioned*

Yesterday afternoon I spoke with Dr. Braverman, my Reproductive Immunologist. The test results from my immune monitoring were back and had been analyzed. He emailed me my report and called me at the same time so I hadn’t even seen the report when, after the usual pleasantries he said “unfortunately, your levels [of inflammatory cytokines and chemokines] are back up”. In addition, my white blood count (WBC) dropped by over 40% despite my daily Neupogen injections. Not good.

I was blown away. Like a true fool, I somehow believed that since I had a “textbook perfect” response to the immune protocol during my last immune monitoring period, the same or similar would be true now. Of course I should have know better.

After all, I’d been having histamine reactions for days. But that has happened in the days leading up to each Intralipid treatment since we cut them back from weekly to biweekly after my embryo transfer. And I had emailed Dr. B about that very issue because this time it was much worse than ever before.

My original question in yesterday’s email to Dr. Braverman was whether I could stay on the immune meds until after what right now is intended to be the last monitoring panel of bloodwork is drawn, results are back and my next report prepared because I was fearful of a histamine response and the possibility that I lack certain chemicals that occur in people with healthy immune systems to counteract the histamines when they go wacky. That isn’t a test that’s currently available according to Dr. B’s website so naturally given my history of histamine reactions it causes me some worry. Histamine issues can result in second trimester losses. I don’t need or want to add that to my resume.

Little did I know things have already gone to hell in a hand basket with my immune system. The elevated levels (and reduced WBC?) could be the result of any of all of the following, according to Dr. Braverman:

1. I have antibodies to the LP’s sperm (we’ve never tested this – why the heck not? I wanted to ask yesterday but didn’t as I was in listening mode and, well, in shock).

2. I have Hy-restricting HLA genes for which no tests have yet been developed.

3. The natural lowering of hCG that occurs around 8 weeks removes the ameliorative effect hCG has on the immune system and consequently my immune system or suspected endometriosis (or both) took this opportunity to go wild.

4. My immune system has developed an adaptive response to the immune medications and is once again dead set on destroying yet another life or at least messing with pregnancy #10.

In case it isn’t obvious (and I can see how it wouldn’t be, this stuff is not a walk in the park to understand, I know) all of these options suck.

My protocol has therefore been changed as follows:

A. Increase Neupogen from 1 mcg/kg to 1.5 mcg/kg. In other words, a 50% increase.

B. Increase Prednisone from 20 mg per day to 40 mg per day, taken in 20 mg doses in the morning and evening (a 100% increase).

I started the increased levels last night. I also had another Intralipid infusion last night.

In case you missed my saying so yesterday, it been a very long and rough week and a bit. Yesterday’s report and call have scared the pants off of me. I am astonished at how quickly things can go from textbook perfect to atrocious and ominous.

On the upside, Dr. Braverman tried to reassure me that the risk of us losing this baby has gone down after week 8 (I’m almost 10.5 weeks now) is reduced considerably in my case. There are no guarantees, of course. But he said his biggest objective in aggressively treating these changes now is to help me avoid serious complications later in pregnancy. I meant to circle back to that part of our conversation later in the call but I forgot. He told me that after reading the report he knew I would have more questions and invited me to email in response to which he would either email or call me at my preference. I have more questions, including this one, but I am going to sit with this for a few more days and gather my thoughts and reassure myself that my feet are still firmly planted on the ground.

If there is one overarching thing I have come to appreciate on this journey and my foray into reproductive immunology, it is this. Comprehensive testing and monitoring during pregnancy matters. In my case, it matters a great deal. For those of you who may not share my views or always appreciate my pushy encouragements to you, please understand that *this is my context*. This is the place from which I write. It is a place where the unexpected can come to pass very swiftly and without much warning. This place is one without certainty or security in which playing ostrich has meant certain death and almost certainly would again.

From this place, I look forward and hope, pray, plead with the powers that be to let Azulito/a live. Please, little spirit baby, please keep chugging along on your long journey home. In the big picture, you are almost there. Please stay. We love you so.

Busy Azulito

Azulito, the little embryo that could, has been growing like mad recently. More on that in a moment.

On Monday this week I had blood drawn (9 vials!) at Dr. Braverman’s Long Island office for my second immune panel analysis. Reprosource will get my blood on Tuesday, November 25, 2014. In about two weeks I should get a full report and analysis about these results as compared to my initial results in July and my results at 4 weeks into this pregnancy (really 2 weeks because those first two weeks were the FET lead-up to transfer).

I am hoping that everything continues to remain stable and in particular that my angry cytokines (particularly but not only my Natural Killer cell activity) continue to accept the rainbow of medications and play nicely with others. I also hope there is no hint of an adaptive response by my immune system, meaning I do not want it trying to do an end-run around the cocktail of medications and attacking poor Azulito as has happened so many times before in my unmedicated pregnancies.

A visit to Dr. Braverman’s office is not complete absent a date with the dildo-cam. Monday’s ultrasound showed a wiggly Azulito measuring 24.4 mm or 9 weeks 1 day. That’s four days ahead based on my transfer date. Baby’s little heart sounded amazing – and amazingly fast – as it galloped along at 182 bpm. The blood flow within my uterus is showing “10 out of 10” according to Dr. Braverman, which is important for placenta formation and a very good sign.

In other news, I have been wondering whether Azulito might be an Azulita. The LP does not want to find out baby’s sex before birth. He is pretty steadfast about this but said I can find out and not tell him. How would that work? Not at all in my case. I have a friend who did this as her husband wanted the surprise as well. But she has a better poker face than I do. And a less slippery tongue I bet. I would never make it through two more trimesters keeping that intimate information under my belt.

So where does that leave me? Disregarding the LP’s wishes – even if by inadvertence – or disregarding my own wish to know this baby’s gender. I have had to ask myself why I want to know.

At first it was because I was so flooded with fear and anxiety and I wanted to know as much as I could do I might better be able to bond with this baby. But I was madly in love with the Miracle Toddler long before he arrived on scene and announced he was not a girl as almost everyone predicted but a wonderful little boy. Clearly I can bond with gender being a mystery. Or an unconfirmed hunch.

There are practical reasons of course. In fact practicality is what has prompted me to muse over this. We are considering doing the MaterniT21-PLUS non-invasive prenatal testing and unless you forbid it the lab reports the baby’s sex with the chromosomal results.

As for other practical matters, in support of finding out is whether we will get to reuse all of the boy things from the Miracle Toddler? Or can I accept others’ eagerness to buy girly things for the new bean? If I am being honest, I am not really fussed about that personally. I know others will have strong views to the contrary but this is our hard-won baby and I don’t feel the need to please others in our decision-making about the pregnancy. Not that I am inclined to that sort of thing anyway.

I don’t have any other really good reasons beyond curiosity. Am I missing something? Do any of you have strong feelings about why you would want to or have either found out or waited for the ultimate surprise?

An Unexpected Moment of Hope

Yesterday the LP had to go to the office and work. The Miracle Toddler and I dropped him off and – many hours later – picked him up.

Earlier in the day I had been thinking about a restaurant that the LP and I frequented when I was pregnant with the MT. The restaurant is iconic, a local landmark that is family-owned and has been through four generations (3 of which you will still find working there). We had already made plans for what we would cook last night but when the LP got in my vehicle at the end of the day he said “guess where I have been thinking about us going for dinner tonight”.

I failed the first three guesses. Then he gave me a hint. I exclaimed how serendipitous that was as I had been thinking of the same place earlier in the day and reminiscing about going there while carrying the MT. Off we went.

It was over dinner that something even more surprising happened. The magnitude of it did not fully sink in until this morning. Now, I cannot believe it even happened. The LP let his guard down and started suggesting baby names for Azulito. At first, I was uncomfortable and did not want to play that game. The flood of negative thoughts and fear rushed in.

It is too early. We could jinx this. We never did this seriously until the third trimester with the MT. This will only make it hurt more later if things go sideways.

The LP persisted and eventually I could not resist. Perhaps it was his effort to suggest the most boring names on the planet that he knew I would not like. Perhaps it was the innocence he conveyed – something that has been sorely absent from our lives and any discussions about babies and making them for a very long time – but at some point I began playing along. I admitted my favourite girl name and said “what if it’s a boy?” (The LP believes this baby is a girl. Of course he steadfastly believed the MT was a girl, too.)

Looking back on that conversation, I recognize it for the gift it was. Thank you, LP. Thank you for having hope. Thank you for believing that this may work out enough to let your heart head down the name game path. Thank you for forgetting to worry and self-censor.

And thank you, Azulito (or Azulita) for giving us this opportunity to dream of one more chance. Thank you for your beating heart. Thank you for surviving the treachery of my immune system (thank you, immune system, for playing nice on all of those drugs I am feeding you). Thank you for sticking with me all this time. Thank you for being with me now.

Come home this time, little blue. Please. We love you so.

Let the Nail Biting Begin

I am officially pregnant. So said Dr. Braverman late yesterday in an e-mail that came after one from my IV nurse at his office saying she was sorry but the lab here back home would not release results from my blood tests yesterday (beta-hCG, progesterone, TSH because of my history of sharp spikes in early pregnancy) to Dr. Braverman’s office.

Dr. Braverman’s e-mail was a welcome surprise. Here’s the skinny from a very early lab visit on 6 days past 5-day transfer (6dp5dt):

hCG: 62
Progesterone: 242
TSH: 1.72

The TSH is up from 1.10 but Dr. B is happy about all of these results. The LP and I are too. I am still waiting for the other shoe to drop but I’ve bit the bullet and booked flights to NY to get the immune testing done (I will be having Dr. Braverman monitor this pregnancy – what’s another $3,000 plus lab costs of likely $1000 – $1500 once or twice more at this point?). I need to get my next Intralipid IV done on Friday and I’m hoping the blood draws can all be done Thursday.

Early tomorrow morning (I was at the lab for 6:00 a.m. yesterday and will be again tomorrow) I will go for beta #2. I am anxious but working hard to restore the calm confidence I had after Gertrude and Alice were transferred from catheter to womb last week Tuesday. Fingers crossed, prayers on overdrive, acupuncture today (thank you, T!) and the hypnotherapy recording and Circle & Bloom meditations are all on the go.

This morning I wanted to let the spirits of both embryos know that even though I know it’s likely only one has made it or will survive, I love them both very much. I also wanted to honour their voices in all of this. And so I asked for some inspiration to do their bidding with more pastels. Here is what they brought me:

FullSizeRender (1)

I am so incredibly grateful for the outpouring of love and support you have all shown me in this past week. I sure hope my immune system does not let me and all of you down in the coming days and week – you’ve all shown such tremendous faith and hope. Thank you so much.

3dp5dt: Holding Fast to Blissful Ignorance

This morning some fearful thoughts tried to sneak their way into my mind. I beat them back with a stick and sent them packing.

Up until that moment, I have enjoyed a very uncharacteristic confidence and sense of calm about this transfer. I never spend the two-week-wait (or the ART variation thereof) in a zen-like state of calm. I am never flooded with peaceful energy and thoughts of my life being pregnant for the coming 8-ish months. Never. Until now.

I feel rather chilled about the whole thing. Yesterday my acupunturist and TCMD asked if I felt optimistic. I could not say yes, not because I don’t have hope but because until I thought about how to answer that question I had been simply feeling comfortable. Comfortable and content. Comfortable that I have done everything possible for this cycle to be successful and odds are that I am pregnant. Content believing that even if it is a complete delusion.

I have discovered the experience of blissful ignorance. How completely fascinating.

I have never understood women saying they did not want to take a home pregnancy test before their beta because they wanted to savour the belief that they were “pregnant until proven otherwise” (an expression I feel quite loathsome toward, even now that I have clearly drank the kool-aid). I’ve always been a band-aid ripper-offer. I routinely and compulsively test early and test often. I have never not tested out my triggers, for example.

This time, I had no trigger. All of my low-dose hCG injections were complete well before transfer (Dr. Braverman prescribed them to help implantation, in lieu of Lupron since we did a protocol without that drug this time). I have no trigger to test out this time. I pulled out tests to stuff into the bathroom drawer last night on the basis that I would start testing Saturday because it is a special day for the LP and I. I knew that would be too early (4dp5dt) but I thought it could give me a baseline against which to measure any changes.

Today, I am reconsidering my decision. What if I feel completely anxious after testing and getting a negative, even though I know it will be negative? I will lose this moment of bliss. My zen-like, peaceful, “optimistic” state will be dashed and it is unlikely I will be able to recover or restore it. Or will it? Can I maintain my faith and find peace in all of this even if I start testing early?

As I think about it, I believe Sunday is the day to start testing. 5dp5dt or 10dpo is the earliest I have ever had a positive HPT before and often the second line is not really visible to anyone not suffering from line-eye until 6dp5dt or 11dpo. But that begs the question, doesn’t it? Should I test at all before my beta next Wednesday? Whether I should or not, I will. That much I know. I just don’t have it in me not to test early. I am who I am.

In the meantime, I am deeply committed to the blissful ignorance that is my unwavering faith that Azulito and maybe a companion are along for the ride and have chosen this cycle to make his/her/their way home at last. I love you, little babies. I know you are only embryos right now but I’m calling you babies anyway. Science be damned.

The last two mornings I have looked to my Animal Spirit Guide cards (I used the physical cards, not the online link or the app). I asked for a message from Spirit about our embryos, Gertrude and Alice. Each morning I drew the Unicorn:

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Immediately after drawing the Unicorn this morning, I realized I had to indulge in some creative play. I took out my intuition journal (because I couldn’t find my art journal) and some oil pastels, picked up the pastel that my hand first gravitated toward (green – coincidentally the same colour as I had my toenails painted for this cycle), closed my eyes and put pastel to paper. Next my hand went to blue – Azulito’s colour – and I closed my eyes again. I continued until it occurred to me that when I’ve been visualizing the mind-body connection to my uterus lately it has been taking the form of a lotus flower. I felt strongly that oranges and reds belonged in the flower out of which the blue and green presences seem to have floated. Here is what resulted:

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When I look at the finished product now, I see flames and our Gertrude and Alice rising out of the fiery lotus flower in phoenix-like resurrection. Gertrude (in green) looks a little rougher around the edges and Alice (in blue) a little more contained.

I do not know entirely what all of this means. But it feels right. And I like that.

I could get used to this blissful ignorance thing. It’s almost as good as Val.ium.

You Already Know the Answer

I woke up this morning with a sense of foreboding about a blogging friend, Lindsey, at Awaiting Autumn. Many of you already know her but if you don’t, please consider stopping by and sending her some care and compassion as she recovers from surgery yesterday after having her first pregnancy (ectopic) rupture in one of her fallopian tubes.

My second thought after Lindsey was that I was not anxious and filled with foreboding as I have been the past few days. I still have the low-grade rumblings of ART anxiety buzzing about in the back of my mind and other organs, but I was not gasping for breath or fretting about the What-Ifs in the way I have found myself doing lately. As I tended to my medical obligations for this cycle (morning injections and oral medications mostly) and thought about the fact that I’d be getting on yet another couple of airplanes to travel to New York again tomorrow, I dug out my Pre-Birth Communication Soul Cards and asked our spirit baby, Azulito, and anyone else hanging out there in the universe with him/her to speak to me through the cards.

I felt my hand drawn to a card before I had fully formulated my question, although I knew that what I wanted to ask about was whether making this cycle our All-Or-Nothing gamble (transferring both of our last two embryos if they both survive the thaw next Tuesday) was the right thing to do. The card my hand was resolutely drawn toward?

“You already know the answer.”

Yes. I do. The answer is yes.

To my surprise and great relief, I asked the LP last evening if he wanted to set aside time to talk about the advice Dr. Braverman had given me on Monday (to transfer both Gertrude and Alice if they both make it through the defrost process) or if he wanted to schedule time to speak with the doctor about that. The LP said no, he had thought about it and he agreed with my gut feeling and the doctor’s advice. We should throw everything we can at my uterus and see what sticks. He may have chosen his words more eloquently.

I love the LP. That conversation reminded me why. I have no doubt that this is one key source of my stress reduction this morning. It is good to be on the same page in this fiasco.

Maybe the LP is hoping that even if this fails, I will realize that the financial burden is already too heavy and end this journey. I cannot say what I will do if this fails. Today, I do not want to give up. I promised myself I would give the immune protocol two chances to work. Making this an all-or-nothing game means we only have one chance.

Failure this time will mean game over as we would be starting at zero with all of the costs associated with designing a revised protocol and having a new DE IVF cycle (because the cost of 3 or more IVFs to use my own eggs at this stage is prohibitive). I am not up for a gestational carrier if we are using someone else’s eggs. I’m just not emotionally there now that we have one child I carried myself.

ART is by far the highest stakes gambling I have ever done. Despite my passion for horse racing (thoroughbreds, please), I am not a gambler when I go to casinos or play poker. I don’t even bet much at the track. But here I am, gambling in the highest stakes game I’ve ever played. And I am telling you I feel relieved to have made the decision to double down. All or nothing. What has become of me?

I hope that Azulito knows what he/she is doing.

Cue the second card I drew. This time, I asked “Is this really going to work?” or something to that effect. The answer?

“I have a plan and please do not worry.”

Azulito should know that this is a tall order. He/she should also know I will do my best. In this moment, I have faith. I trust there is a plan. God and Azulito have a plan. I will try not to worry. Too much.

Spirit Baby, I Choose You

I think for many of us, when we do IVF the first time notwithstanding the statistics saying it only works some – nowhere near 100% – of the time it’s inevitable that we believe in whole or in part that it will work, if not the first time then sometime soon afterward. When IVF does not make our dreams come true (cancelled cycles, BFN, loss), it is such a blow.

When one moves on to donor egg IVF and the same thing happens, it can shatter who you think you are. The blow is hard. In my case, much harder than the first blows with ART. In the LP’s case, the blows may have been more comparable.

When one gets a diagnosis saying you have so many immune and genetic obstacles it is unlikely you could ever stay pregnant and practically impossible for you to carry another child to term after doing so once, as I did, the devastation is complete. Or one is inclined to think it is. We want that to be the final blow.

I pray and hope that there is no next level or layer of obliteration of my sense of self and faith in God, myself, western medicine, traditional Chinese medicine and the contract I believe we have made with our spirit baby.

My fear is not gone even though I am choosing not to give her voice. The risks are real. I know that. I choose not to think about them. I know from experience that this means any negative outcome will be soul-shattering.

I know there is a decent chance the first time we do this immune protocol and use a frozen embryo that may not survive the thaw we run the risk that it will not work.

The risks are real.

I choose not to linger on them.

I choose faith.

I choose hope.

I choose life.

I choose my beautiful, powerful, heart and soul shattering spirit baby, Azulito.

Azulito, I choose you.

Intralipid Hiccup and Other News

Gratitude
I wish need to begin this post by thanking each and every one of you who reads my blog and supports me in my journey to have another living child.  I am more deeply grateful than I have words to express.  My eyes smart as I write these heartfelt words of appreciation.  Your kindness, compassion, support and love mean so much to me.  Thank you.

On the subject of gratitude, I would like to offer special thanks to Jasmine at Journey in the Woods – an infant loss and writing blog that speaks from and to the heart in the most intimate voice of a fiercely passionate yet deeply grieving mother – for nominating me for a Sisterhood of the World Blogger Award.  You can see her post here. I will write a post on the award, hopefully soon. Please stay tuned for that.

The Intralipids Hiccup

I will start this wee rant by saying that in the past eighteen-ish months I have developed and find no shortage of sources to fuel a thriving contempt for the public health care system in my country. I have been let down one time too many.

I got a rather unpleasant surprise yesterday when I visited my doctor’s office. I had booked this appointment in August. It was the first available appointment (and this is my family doctor, not a specialist). Of course it lands at the start of the week in which I finally expect to start my next (and prayerfully last) FET cycle.

I assumed that since my doctor is sympathetic (having seen me through 7 of my 8 miscarriages and our one successful pregnancy), she would make magic happen for me. She did just that on one hand (she gave me requisitions for blood and ultrasound that are for fertility treatments, which normally would cost me about $450 combined per monitoring appointment). I was anxious about whether she would do this (or be able to do it).

It never occurred to me that my doctor would not be licensed to prescribe the IV mayonnaise (intralipids or IL) that Dr. Braverman has recommended I have piped into my system weekly. Its ostensible purpose is to neutralize my unbelievably high Natural Killer cell activity and calm some of my systemic inflammation, both of which are believed to be contributing to my recurrent miscarriages and implantation issues.

Not only am I fully on-board with this recommendation (even if it ultimately turns out to be a variation of snake oil), I am terrified of not doing it (and doing it weekly) given that my NK activity levels are in the 98th and 99th percentiles in the 50:1 and 25:1 tests. I do not dare fail or refuse to pump liquid fat into my body to neutralize those NK cells given what has happened with my previous pregnancies. I will do whatever it takes to make this happen.

Which, as it turns out, means making weekly flights from the northwestern Canada to New York’s eastern seaboard (along with the related travel expenses and arrangements that invariably will include planes, trains, automobiles and possibly buses). Welcome to Plan B, version 37.0. I will have my first IL IV at Dr. Braverman’s Long Island clinic this Friday. He was gracious enough to walk through some alternatives for a Plan C on the phone and via e-mail yesterday but so far nothing is confirmed beyond me heading to his clinic every week for the next several weeks.

I should have bought shares in some of the U.S. airlines. Oh yeah, with what money?

Holiday season and winter are coming. I cannot continue Plan B through an entire trimester of pregnancy if I am blessed enough to get and stay pregnant during this cycle. So there will need to be a Plan C and I will need to implement it in October, after we figure out whether (a) our embryos or at least one of them survives the thaw; and (b) the transfer is successful. I should know that by roughly the third week of October (this is happening so fast all of a sudden. EEP!).

At the moment, Plan C options include:

1. Camping out in an Emergency Room at a nearby hospital and begging for mercy from a prescribing ER physician who will agree with Dr. Braverman’s recommendation for IL and approve me having them administered at said hospital’s IV Therapy Clinic. There are a few such clinics in my city, all seem to require a referral from a doctor with admitting privileges at the hospitals. My GP does not have those privileges, of course. My ObGyn has privileges at a hospital (the women’s hospital) at which there is no IV Therapy Clinic, of course.

2. A variation on item 1: Asking my GP to refer me to a doctor with admitting privileges at a hospital with a IV Therapy Clinic. I do not know if this is actually possible and the RN I spoke with yesterday at our healthcare referral service yesterday (who was remarkably sympathetic and put in 100% effort to try to help me) had no idea either and was unable to determine that from the records and databases available to her.

3. Travel to the U.S. or possibly a fertility clinic on the west coast in my own country where the owner/RE does IL treatments for his patients (which I am not). The travel cost of doing this is roughly equivalent and in some cases greater than me flying to the U.S. Dr. Braverman said his scripts/recommendations are “sometimes” followed by doctors at the Beer Center in northern California. There is also the possibilty of asking my former southern California RE to help out with this since he was willing to have me do one or two IL treatments during the FET cycle he proposed we do before I insisted I have immune testing completed before doing any more embryo transfers.

Yesterday I was stunned, scared and overwhelmed but relieved after Plan B fell into place. Today I am angry, bitter and resentful of the bureaucracy and delay and Kafka-esque absurdity that is navigating the Canadian public health care system for something as innocuous as intralipid infusions. I want to throat punch the public health care gods right now. You guys truly suck. If I were in control of your oxygen buttons, I’d be turning them off right about now.

On that positive note, let’s move on to item 3 on the agenda, shall we?

Hypnotherapy

Ah, zen. I cannot tell you what happened during my hypno appointment last night because I don’t remember anything after seeing the bright flashes of light and colour that mean Azulito (our spirit baby) had arrived. I will get the recording today sometime.

Apparently I did not speak this time although I was very animated and made a lot of facial expressions that convinced my hypnotherapist that I was in a good place and communicating with some one or ones. I believe that is true although I was a little disappointed to not remember this time, unlike last time. And because I did not speak aloud, the recording may not tell me much more about the communications I was having. I do feel quite certain I was communicating at least in part with Azulito and I am grateful that the feeling I was left with afterward was one of deep calm and reassurance.

I believe I have made the right choice. If I waver (and I will, because equivocation in this area is ingrained in me), I will remind myself of the Falcon’s guidance and I will listen to the hypno recording to soothe and reassure me. That way, I can befriend my fear rather than let it run the show.

Despite the IL hiccup and my general worry that this will not work, I am starting to get the tiniest bit excited about this FET cycle. EEP!

Hello, Spirit Baby! Long Time No See…

I started this blog after our third miscarriage in 2013.  That was my 6th pregnancy (5th loss).  Sometime between pregnancies 4 and 6 I started reading about spirit babies and the idea that when we lose a pregnancy, the soul or spirit of the lost baby does not “die” with the fetal tissue.  I was quite enamoured with this idea and still like thinking that our Miracle Toddler is the repository of the first soul we ever loved in 2010  and lost in early 2011.

The LP and I have chosen to believe that the soul of our first baby together (my first pregnancy) is alive and well in the Miracle Toddler.  This brings me great comfort, as my first loss was for a long time the hardest one for me to accept and survive.  I suspect that’s true for many women who suffer as I do from recurrent pregnancy loss.  The first one shatters our innocence, even if we knew the risks of miscarriage going into the pregnancy.

All of this is a meandering way of saying that I started and named this blog with my belief in spirit babies firmly in place and my hope that IVF would bring our spirit baby/ies home alive and kicking.  Along the way, with three more miscarriages under my belt (so to speak), my hope and faith have taken a serious beating.  Suffice to say I have considered throwing in the towel on more than one occasion.

Lately, the journey to have another living child has been less about spirits and more about numbers, finances, lab tests, research and investigations into my apparent immunological issues.  My heart left the equation and it’s been either cerebral and pragmatic or intuition-driven.  Our beloved spirit baby, Azulito (named little blue because that  is the primary colour in which s/he communicates with me), has been quiet and I have not had the courage, will, desire or je-ne-sais-quoi to insist on any direct communication.  As I said, my heart left the equation.  And with it, for a time, did Azulito.

That changed yesterday at my acupuncture appointment.  I had a lot to tell my acupuncturist – I’d made two appointments for the second opinion she encouraged me to consider getting, I learned that the geneticist would not see or help me, I’d finished the course of Prednisone, I’d finally ovulated (a couple of days late and with much breast tenderness – thank you, steroids), our current RE refused to work with a reproductive immunologist and preferred to transfer my care if that was the path I chose – and she ruminated a while then made some observations and suggestions that have resonated deeply with me.  I thought I would share them in case they assist anyone else facing similar circumstances.

First, she commended me on trusting my intuition (my gut, not the panic in my chest) to bite the bullet and commit the LP and I to flying to New York to see Dr. Braverman and not to go ahead with another FET next month during the presumed “immune quiescence” that our current RE said should follow the Prednisone course.  Then she said that I will need to tap into my intuition even more in the coming weeks and months as I receive opinions from specialists (Braverman and current RE among them) who will have their own world views and will offer opinions to which they themselves will by nature be rather heavily committed.

To do that she suggested I must work on developing and trusting my intuition. She recommend I start with a book that has been around forever but contains useful exercises (without which the book is of very limited usefulness – she didn’t say that but I read between the lines).  The book is Practical Intuition by Laura Day, for anyone who is interested.  I have ordered it as it was not available locally.  I will post an update after I have read and done some of the exercises but if anyone has already read it and has any thoughts or insights, I would love to hear them.

With that book I ordered one by Sarah Ballantyne, The Paleo Approach: Reverse Autoimmune Disease and Heal Your Body, thanks to a recommendation I got here on my blog (thank you, whereareyounumber2).   I don’t know if I’ve mentioned it here but a few weeks ago the LP (who ordinarily eats like a 15-year old, sugar, simple carbohydrates and dairy were the mainstay of his entire diet) decided to try the Whole 30 plan, which as best as I can tell is essentially a Paleo approach.  I said I’d join him so I cut out even the non-glutenous grains I was eating and have tried hard to cut out sugars.  I was already off dairy due to the crazy allergic reactions I’ve been having since that miscarriage #3 in 2013 and wasn’t eating much sugar to speak of.  I am interested in the read and some new recipes so I figure it was time to invest in another book!

Back to yesterday’s revelations.  In addition to the sage advice about developing my intuition because I will need it more than ever in coming weeks and months, my acupuncturist suggested that I probably already know from my experiences leading up to the birth of the Miracle Toddler and my parenting since then that our little ones have lessons to teach us and parenting is as much about what we learn from our children as what we teach them.  Sometimes the hurdles in meeting them is about learning lessons we will need to work with those little personalities once they arrive.

Shazam!  That rung true for me and I hastened to recount one early session in which I was communicating with Azulito using the techniques and questions suggested in Spirit Babies: How to Communicate with the Child You’re Meant to Have by Walter Makichen.

During the communication I recounted, I asked Azulito why s/he had chosen us and what we could do to facilitate him/her sticking around to become our next living child.  Azulito showed me a classroom with a teacher writing on a chalkboard (how old school, right? Azulito apparently doesn’t know about smartboards).  The message was clear and a single word resonated in my mind after that communication: Education.  I did not know if the message was that we were to learn from Azulito, that Azulito was to learn from us, that we could provide Azulito with the formal eduction s/he wants, some combination of these possibilities, or some variation that had not yet occurred to me, but of one thing I was certain.  Azulito chose us because of education.

As I was telling this story and my interpretation to my acupuncturist, I saw flashes of that electric blue light with a halo of bright yellow-orange around it that I know to be Azulito.  Yes! Yes!  It was as if Azulito were shouting in my head “It took you long enough!”  This poor spirit baby is waiting around for me to make these connections.  I have been thinking for some time – before the DE FET in May in fact – that I’m missing something, but I do not know what.  When those Azulito-lights flashed behind my eyes, I felt as though the light came on and I could imagine Azulito saying “finally, you are on the right track.”

I am so glad Azulito is back.  And I hope I finally am on the right track this time.  Time will tell.

From Zebra Wisdom to Purple Turquoise

Yesterday’s transfer of our top contender of frozen DE embryos was picture perfect.  Thaw went well, embie looked awesome, I was chilled, I wore happy socks, I was on Bliss Mountain.

Speaking of pictures, allow me to introduce our 4AA embryo, currently shacking up inside this happy mama:

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I had acupuncture treatments immediately before and immediately after, on the same OR table on which I had the transfer.  I was so relaxed I declined the offer of a full or half dose of Valium to ensure I was calm and not fidgety during the transfer.  I got to watch on screen, I didn’t have to deal with meeting a new RE for the first time, I didn’t feel like a number… all in all it was a very different experience than my last own-egg transfer at our former clinic.

I spent a great deal of time doing meditations and saying prayers to a fertility goddess sculpture from Bali (my awesome acupuncturist sent me photos of a sculpture of this deity – the woman with many children is how she was described though as said awesome acupuncturist noted, there has to be a better name than that in the original language in which she was named!). I also had a nice, sunny 30-minute walk to the clinic before my first acupunture.

And, of course, it may have helped me relax knowing that I was wearing fun socks I bought just for this transfer:

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Finally, I had drawn the Zebra from my deck of Animal Spirit Guide cards on Monday night. The zebra helps us move beyond fear and have confidence in where we are going. Just the message I needed. Thank you, Zebra!

I was a little sad that the LP could not be there with me, but he was a ball of nerves that morning and later said I’d probably have needed the Valium if he had been there, vibrating away.  He is probably right about that.  This is part of what makes us a good team – knowing our own neuroses and how they impact each other!

I rounded out the day with an emergency trip to the pharmacy (new RE increased the micronized progesterone from one 200 mg dose per day at bedtime to two such doses, about 12 hours apart, to be continued until 12 weeks of pregnancy).  I like that they had enough confidence to prescribe and have the pharmacy fill the entire amount, as though they have no doubt I’ll be carrying little 4AA until then and beyond.  Since my insurance covers drugs only (no treatments), I was fine with filling the entire prescription now as well.  Our old clinic never banked on our ART treatments working out and only gave me drugs to get past beta hCG tests number one and two.

Speaking of which, first beta is next Tuesday, May 27th.  I’m presenting at a conference out of town that day so I’m not sure how this is going to work, but I’ll make it happen somehow even if I have to pay for my blood test upfront and get it reimbursed later.

I have no doubt I will be peeing on sticks in the meantime because… well, that’s just who I am.  I would like to tell you and myself otherwise, but I just don’t think I will comply with any requirement I might impose upon myself, so I won’t engage the charade.

What about the purple turquoise, you ask?

My incredibly supportive sister-in-law (the only family member who knows what we’re really doing here) sent me encouraging notes before and after transfer (I am so thankful for this support) and also suggested I do something special or whimsical for myself yeterday before I flew back home.  And so I did.  I found some jewelry designed by a Navajo artist and bought some earrings made of purple turquoise (supposedly it is made at the Kingman mine in Arizona and involves manipulation of “true” turquoise).  The earrings spoke to me because in addition to being quite striking visually, they contain the colours I see when I communicate with our spirit baby, Azulito.  A perfect ending to a perfect transfer day, I think. 

See for yourself:

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I am so in love with this little life inside of me.  Yes, already.  And I am officially (read: artificially) 20 days pregnant today and insisting that the universe do none of that “proven otherwise” business this time around.  I am pregnant and I’m staying that way until this baby pops out in early 2015.  ROAR!

Starting Over and an Ode to We Survivors

I am in awe of we women (by “we”, I trust you know who you are) who, despite failed cycles, devastating pregnancy losses (at any stage, because they are devastating no matter when they happen) and infant loss, face a new cycle of trying-to-conceive with hope and an open heart filled with prayers that it not be broken… again.  There is a resilience required of us that I rarely stop to contemplate, but today I am intensely aware of how much courage, faith, hope and endurance it takes to run this marathon time and time again. 

I am humbled to be in such powerful company.  Many of my compatriots have moved on to pregnancy in the last year.  To all of you: heartfelt congratulations!  I am cheering each of you on.  Even on my darkest days I am so grateful for the light that has come into each of your lives and I pray it stays there to brighten your days for years to come.  I hope one day to join you on “the other side”.  Confession:  I am hoping that day comes soon.

Today is day one of the cycle in which I hope and pray we transfer the one frozen embryo that becomes our healthy, living second child.  Except for taking progesterone supplementation around transfer time until beta day or, hopefully, until the placenta takes over supplying that hormone in sufficient quantities for me to wean off the supplementation, this is a drug-free cycle.  I’m still taking some supplements, including some new ones based on epigenetic research, as well as the Traditional Chinese Medicine herb blend my acupuncturist prescribes for me (it’s intended to help maintain or restore balance and to support sustainable pregnancies for women who suffer from recurrent pregnancy loss).

I will travel to our new clinic on May 8, 2014 (5 more sleeps!) to start monitoring for natural ovulation, which should happen the following week (fingers crossed for no more delays!).  The LP and our Miracle Toddler will join me a week later, on May 15, 2014.  By then we are all hoping I will have ovulated and transfer will be a few days away.  I cannot wait to show the Miracle Toddler the beach, the ocean, sunshine and blue skies (all on the same day, hopefully!). 

May is a good month for us.  The LP and I celebrate our wedding anniversary the day before I leave.  May is also the month of the natural cycle in which I got pregnant unexepectedly before we geared up to start IVF for the first time.  That surprise gave us the Miracle Toddler.  I wonder if the synchronicity of these events is a good sign or merely coincidence? 

I smudged myself and our home on some sage advice (pun intended). I owe a heartfelt thank you to TG for the suggestion and the loan of her sage and feather for this purpose.  We have turned over a new leaf.  This is a new beginning.  It is day one of a brand new cycle – The Cycle – so of course I am filled with hope.   This time will be different.  The signs and our spirit babies are telling me so.  And I choose to believe them.

 

Mandalas for/from our Spirit Baby

This week has been sheer madness – I’m too scared to say anything yet so more on that perhaps in future post(s) – but thankfully it all started last Sunday with a peaceful 3-hour art class I attended entitled “Making Mandalas.”  I made several mandalas, all of which were in some way inspired by and a tribute to our spirit baby, Azulito (little blue). 

Below is my favourite, made with oil pastels and love. 

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We  miss you and hope to see you soon, Azulito. 

Love,

Mom

There is a Light That Never Goes Out

For those of you awaiting fetal-tissue-pathology news:  Thank you.  Thank you so much for supporting me and being interested in how I’m doing and what I’ve found out.  And, I’m sorry.  Nothing to report yet. 

I saw my doctor today and she said it’s inexplicable to her, she can’t find the report on the centralized electronic database where all medical reports and results are usually kept in this digital age for all of my caregivers in the same jurisdiction and calls by her nurse to the surgeon/obstetrician who did the D&C have not been returned.  It makes no sense that pathology results would not be back after 6 months, she added.  She had her nurse give me the surgeon’s phone number.  I called.  The receptionist said they have a pathology report but “nothing else” and assured me she would have the OB call me.  Guess what? Yeah. I’m still waiting for that call.

Oh well.  I’ve got ideas and experiences to share.  The bonus is, they are more positive than a fetal pathology report.  And they allow me to let go of my anxiety, for a moment at least, about those missing results.

First, the LP and I went to our long-time counsellor this week.  On the agenda was “where are we, where have we been and where do we go from here”.  We grieved a little (5 losses in the past year have become a big, dark cloud that shadows our every move individually, as a couple and sometimes as parents), we celebrated a little (our Miracle Baby is now a punchy, joyful toddler and source/recipient of boundless love) and we talked about what things might be like if we could remove the dark cloud. 

I came to a number of realizations:

1.  I am very freaked out when the LP claims to have no feelings about potential plans that could alter our life’s path or the events that have led us to consider those plans (i.e., using donor eggs to have another child);

2.  I am afraid of losing any more babies (and that fear is not limited to pregnancies conceived with my own eggs) but if I imagine the fear and the sadness lifted, I am so happy to consider the possibility of us having and raising another child;

3.  I have no particular attachment to being pregnant and would rather avoid it if we could parachute in a new baby without that step, though I’ve no desire to engage and we have no budget for a gestational surrogate;

4.  The LP was far more devastated when our January IVF cycle did not result in a viable pregnancy than I was and this may be directly correlated to the incredible hope and faith he invested in the belief it would work and his choice to be positive throughout (which is not his usual starting position);

5.  The world changed for me when we lost “Mandy” in late September and my faith in my body’s ability to get and stay pregnant has never been the same; and

6.  Having a dark cloud shadow your every move can prevent you from having a hot clue what your feelings actually are and if you even have any (beyond “sad”).

But most important of all was the revelation that the LP loves me more than I even know how to articulate.  As our counsellor put it, he is prepared to give me this incredible gift of saying “I love you, I trust you, I want what you want” without any subtext or pretence.  He may not know how he feels about it all, but what he knows he feels is a deep and coursing love and a desire to co-parent our children together. 

It took a long time for me to see this for what it is, to stop trying to dissect it and determine if there is some latent defect in this plan that will backfire in my face if things don’t work out as we so desperately hope they will.  That, too, was an awakening for me.  The problem now, in large part, is me.  I have lost my mojo.  I am finding it hard to trust anything about baby-making these days – perhaps most imporantly my ability to carry another child to term and to believe I can do that even if we use a younger gal’s ova. 

Now that makes me sad.  Intensely sad.

At the same time, I feel a weight lifted.  If this isn’t about the LP having some underlying, deep-seated but unspoken opposition any longer, then I am free to move forward if I so choose, when we are ready.  Wow.  That is huge.  And a sea change from where the LP was – where we were – a few short months ago.  Amazing.

And that brings me to the light that never goes out.  Enter spirit baby, stage left.

I was recently working on some of the meditations from Walter Makichen’s Spirit Babies and trying hard to make contact with our spirit baby/ies.  I wanted some clarity – are you still here?  Am I meant to meet you in the physical plane and share a life with you sometime soon?  Am I kidding myself?  Is there anything else I can do or stop doing?

I’ve mentioned my fear to attempt this kind of communication.  I’ve been afraid that Azulito, my little electric blue spirit baby, may have disappeared in the past few months.  I was fearful that the pattern of the past year has been a slow, painful way to bring all of this to an end, not the end I wanted.  But I hunkered down and asked for an audience with the spirits I have felt around me in the past.

I suddenly heard myself sing the chorus from the Smiths’ song after which I’ve titled this post.  “There is a light and it never goes out.”

I was so surprised.  Where did that come from?  Well, from Azulito, I believe.  I am sure that this came from somewhere beyond the here-and-now, the quiet, early-morning air of our basement where I sat rocking myself, hoping to get some kind of message.  And there it was.  The message was clear.  Our little spirit baby’s light is strong and unwavering.  And waiting, just like me.  Waiting for the day when we hold hands, with open hearts, and embrace as mother and child.

Some day.  I hope.

 

Pleasant surprises

Even a journey through secondary infertility (or infertility of any ilk) has its occasional pleasant surprise.  Sometimes, you hit the jackpot of surprises.  Today is one of those days for me.

First, I got a call back from the RE’s assistant telling me our appointments for the scary ultrasound and for injection teaching are next Wednesday, not in about 2 weeks as I’d expected (and been led to believe from a prior call).  Hello, surprise #1.  It’s a little harried organizing my own and the LP’s work schedule and child care and two flights and all, but I’ll take it if it means getting this party started sooner than expected.  Yay for us!

Then what happened?  The most awesome surprise to date on this journey to date.  No, I’m not pregnant with a healthy child.  Yet.  It’s not that good.  I did say “to date”, meaning the best IVF-related news we’ve had so far.  Keep reading.

Background:  I called the LP’s benefits provider recently.  No coverage for fertility drugs.  No surprise there.  We work in the same profession so I was expecting much the same when I called mine.  I was so sure it would be another bust that (a) I hadn’t called yet and had no plans to until someone else in a similar situation said she got some of her drugs covered so I thought I better ask even though it was very unlikely the same would be true for us; and (b) I was multi-tasking while I asked the first question (does my policy cover any fertility medications?).  As expected, that got me on hold.

I’m still multi-tasking when the woman takes me off of hold and says,  “yes, you have 6 months’ lifetime.”  I was so stunned, I sputtered my best “what?” before following up with “sorry, my clinic gave me a long list, do I just tell you the names or the DINs (numbers for the specific drugs/dosages) and you tell me if any are excluded?”  Her turn to say “what?”

I regained my composure and said I’ve never done this before and don’t really know how this works.  I want to find out if the drugs I might be taking are covered or excluded. Does she have a list we can cross-reference?  This got me back on hold.  After some more to-ing and fro-ing, the woman confirmed everything on my shopping list is 100% covered except the PIO (progesterone in oil, an injectable form you take after the eggies get sucked out of your lady parts so the uterus can make a nice plush lining for the critters to hunker down for the winter, summer or both, as the case may be).  I’m okay with that.  I’m sure if every conconction is on her list, the PIO will be covered, too (if it even gets prescribed).

This leads to my unsolicited advice to anyone in a similar boat.  Do not assume you have zero coverage.  Call and ask!  Best phone call I made today.  Heck, I’m going out on a limb.  Best call I’ll make all week.  That’s between $3,000-$6,000 in savings.  Double yay for us!

In other IVF-for-the-over-40 news, I’m equal parts excited, scared and hopeful about getting this party started.

I’m a little scared of the SHG – an ultrasound in which they cram your uterus full of saline to check if there are any scars, polyps, aliens (hey, I remember Sigourney Weaver in her heyday — or was that hairday?) and other interesting paraphenalia.  I’m hoping for an “all clear, full steam ahead” report after that test.   I hear it can be quite painful, much worse than an HSG, which is not the same thing for anyone googling weird tests on your lady parts (an HSG involves saline in your falopian tubes to check if they’re clear of blockages or other anomalies).  And of course I’m scared I’ll get bad news (something wrong with the lady bits post-D&C) or, much worse, that this whole IVF thing won’t work.  Given the odds are against us, that’s a pretty reasonable – albeit entirely unhelpful – fear.  I’ve got my EFT training tonight to help me learn to address that fear, however.  “Even though I am afraid this won’t work…”

I’m excited because, as my acupuncturist said, the double good news surprises today suggest that more good news should follow (who says it’s only bad things that happen in threes?).   And having a chance to make more eggs (hopefully) in the hope that at least one will be a healthy little body for our Spirit Baby to inhabit is pretty exciting.  I’m feeling positive about this journey (for the first time, I’m happy to say).

I am hopeful for the same reason – I want this to work.   I so desperately, longingly, painfully, tearfully, heartfeltly (okay, not a word, I know), truly, madly and deeply want this to work.

I would like our little Spirit Baby, the little lovebug that keeps coming back but hasn’t stuck around the last 3 times, to come home.  Please, little Spirit Baby, please come home.

That would be the most awesome surprise ever.

Wish us luck.  Please.

And thanks for reading.

Fresh Blood, TMI and the Paranormal

Finally.  The Period that doesn’t end a sentence has arrived.  It’s been kicking around a couple of days now, actually.    And it’s making me happy for a couple of reasons.

Spoiler alert:  Too much information headed your way.  Feel free to skip down to the Paranormal part near the end if you’re a bit of  a princess or just not into the blood and lady bits discussion (I can’t imagine men reading this but I’d include most if not all of you among those who should follow this invitation).  Don’t worry, I’ll capitalize the paranormal.  You won’t miss it.

First, the Period beat expecations.  Last week I got a call from the pregnancy loss program that’s been tracking my “progress” since I underwent surgery to clean out the lady bits after we had our 5th pregnancy loss in September.  The nurse (a vintage gal like me, perhaps even older and completely fabulous) said not to expect “a normal period.”  She said the bleeding would not be like usual this time, that it was likely to be dark, brown, sludgy.  In short, she said it would evidence my body completing its task of further shedding the lining of my uterus from the lost little lovebug.

Not so!  When I say fresh blood, I mean it.  No sludgy brown goo here!

Second, more than two years of TCM (Traditional Chinese Medicine) and acupuncture treatment have taught me something: fresh blood (and plenty of it) is a good thing.  It means the vintage equipment has been and is working as it should.  This isn’t my body shedding an old lining, but one that it created in the last few weeks, while I waited (impatiently) for the ol’ red (or sludgy brown) gal to show up and party.

Why do I care if the blood is fresh and plentiful or that the lining it’s helping me shed is new?  Because I am desperate for straws at which to grab?  Well, yes.  But also because one of the things that can (and often does) happen after a missed miscarriage or MMC (meaning baby dies without you knowing it with certainty until an ultrasound tells you and the medical people so) that is resolved by surgical means (D&C, D&E) is a thinning of the uterine lining.

Why does that matter if we were not baby-making this past cycle anyway?  Because if my body recovered from the D&C and made a thick enough lining for me to be having what by all accounts (okay, by my solo account) appears to be a “normal period”, then my body has not been impaired in its ability to make a nice, thick, cushiony little home for any embryo that might have tried to embed itself in there.   In theory, if it can work  right after the MMC and D&C, it should be able to work in the coming weeks, when I’m (hopefully) hopped up on hormone therapy (isn’t that an oxymoronic expression?) and having multiple little embryos transferred back into my little batcave.

A girl can dream.

All you readers who wanted to skip straight to the paranormal?  Tune back in here.  PARANORMAL coming right up.

Remember my post about Walter Makichen’s book, Spirit Babies?  I loved the book but wasn’t sure I really knew what to do or if it would work, me talking to the spirit baby or babies that may have visited the LP and I but haven’t come home with us yet.  So I tried a “guardian angel” meditation today.  The idea is to quiet your mind, burst a big green bubble of energy with your breath and communicate with the guardian angel of the spirit baby you hope joins you in the physical realm at some point.  Easy-peasy, right?

Not quite.  It’s bloody hard to quiet this vintage gal’s busy monkey mind.  I’ve got the grocery list, the chore list, the Christmas gift list and the files-I-have-to-work-on-right-now list jockeying for position.  I’ve got the “I’m tired and could be going back to sleep right now” alter ego rearing its mischevious little head.  This meditation stuff is hard work!  I spend 10 minutes trying to do the prescribed 5 minutes of chanting with a quiet mind.  Then I stop.

I ask my question:  Is there anything else I or we need to do for our spirit baby to come back?

Silence.

I chant some more.  I stop.  I ask again.  I listen.  Fear creeps in and I think maybe I should have started with the more obvious question – is the spirit baby ever going to come back to us?  But I push the fear and that question out of the monkey mind.

Then I feel it.  Something is there with me.  My eyes are closed so I can’t see it (I’m not sophisticated or imaginative enough to “see” it in my “mind’s eye”, whatever that really is).  But I can feel it.  Involuntarily, I blurt out “oh, you are here with me.”  I am grateful, but too stunned to say that.  I hope the guardian angel knows this. (If that is, in fact, who I’ve summoned. Of course, I want to believe it is because the other possibilities are just too  freaky for this novice’s liking).

I ask my question.  There is no immediate answer.  In fact, there is no “answer”.  Nothing I could say I heard, felt, saw, smelled, tasted.  But after waiting a little longer, I lied down thinking I’d have to try again another time.  Then I heard myself speak.  It was going to be okay.  Everything would be alright.

Was that my answer?  Being a literalist, I was fleetingly annoyed.  It wasn’t responsive to the question.  But there it was, plain as day.  “Everything would be okay” was what remained in the room after my first attempt to communicate with our spirit baby’s guardian angel.  Everything would be alright.

The message was for me to have faith.  At least that’s what I took from it.

Let’s hope the guardian angel is right.

Waiting for our Spirit Baby

Patience. A virtue, perhaps, but not one of mine.

It’s been 6 weeks since I had surgery to terminate my last unsuccessful pregnancy.  The LP and I cannot move on to Plan B (IVF) until we see some fresh blood.  Ugh.  I thought you waited until your post-retirement years to start reliving the longings of youth?  I have not wanted to see my period show up so badly since I was young and avoiding the very thing I now so desperately want.  Life is full of twists and turns, isn’t it?

What better way to pass time when waiting than reading, right?  Okay, silly youtube videos offer more rapid-fire distraction.  But I miss reading.  In my job, I read and write and think all day, too many days a year.  It sucks the joy out of reading for pleasure sometimes.  To combat this, I buy books that often get started, but less often finished.  Two of my three latest book purchases fit this bill.

The third, “Spirit Babies: How to Communicate With the Child You’re Meant to Have” by Walter Makichen, is making a run for its money.  I’m more than half-way through and while there was some serious eye-rolling when I got it and more when I cracked it open, I actually love this book and the little seeds of hope it has planted in my heart.  I know what you’re thinking.  Quel fromage.  Yeah.  Well.  Hormones and secondary infertility do this to a person.  What can I say?

I figure there must be another child LP and I are meant to have. Otherwise, why would I have inadvertently bought 3 copies of this book?  I’d like to blame the internet, which is at least partly at fault, but instead I gave one copy to my acupuncturist and the other I’ll return. The third is mine.  I don’t know how our spirit child managed this, but I’m sure there was some magic to the whole thing and I’ll take magic where I can get it.  For anyone facing the anguish of being unable to conceive or carry a deeply loved and much-wanted child, magic – like luck and miracles – is a good thing.

In short, I’m liking this book.  Thanks, Walter.  So much so, I actually looked him up to see if I could get a “reading” with him.  Sad news.  He died in 2011.  Rest in peace, Walter.  And thanks for the beautiful, inspirational true stories.  And hope.  Where would we be without hope in all of this?

I have tried some of the meditations in Walter’s book.  I cannot say I know what I’m doing or that I am confident any of it is achieving the intended goal (communicating with the child I hope we are meant to have), but I’m not giving up.  Like a terrier, I’m tenacious if nothing else.  Most times.  Not always.  Sometimes I’m a blubbering puss.  We all have our moments.

While waiting, I’ve also been trying out more of the EFT (emotional freedom technique) coaching.  To be honest, I’m really struggling with this stuff.  I’m okay with talking to our Spirit Baby, but the tapping and reaching back to past traumas and unpacking them, while helpful in a big-picture way, I’m sure, seems so disconnected from my goal.  Also, I kind of just don’t “get it”.  I mean, I understand the principle and believe in the power of the mind-body connection.  But I don’t get how the EFT work I’m doing is making it more likely we will have another healthy munchkin.  But.  It came highly recommended from someone I love, respect and trust (my first acupuncturist, with whom I credit the first munchkin, in large part).  So I paid for five sessions and I’ll finish those five at least.  Tomorrow is my third.  Stay tuned.  There may be a revelation in all of this yet.

So, the wait is almost over.  Down-regulation will start soon (drugs to make your ovaries and other reproductive organs take a little snooze).  Then a baseline ultrasound and injection education (I’m actually looking forward to the latter and thankful I’m not scared of needles or the minor discomfort or pain they might create).  Then stims (drugs to fire things up and get the ovaries into overdrive, but not too far into overdrive that we crash and burn) and then – God willing, Spirit Baby cooperating and Magic aplenty – egg retrieval (ER) and – again, God willing, Spirit Baby cooperating and Magic aplenty – egg transfer (ET).  We and our reproductive endocrinologist (RE) are not expecting to have any extra embryos to freeze, although they make us pay for that service up-front, just in case.  One can always hope.

In light of my advanced mama age and the corresponding very low likelihood of having twins or more, the plan is to transfer multiple embryos if they exist by day 3 or day 5 (depending on the RE’s advice about how things are looking at days 3 and 5 after ER).  We have chosen not to do pre-transfer genetic testing on any embryos we do produce (PGD or CGH) on the assumption I won’t make that many eggs and not many will make it to day-5 embryo stage if I do make more eggs than expected (I wouldn’t test at 3-day stage for a couple of reasons).  If reality proves us and our RE wrong, I may reconsider and ask for testing instead of an immediate transfer, in the hopes that we get at least one healthy embie to transfer and forego any more miscarriages (or worse, the decision whether to terminate for medical reasons if it came to that).  I know this possibility is so remote that it bears little contemplation, but I’m a firm believer in anticipating and planning for the “what-if”. Occupational hazard, perhaps.  And one can dream.

Meanwhile, I’ll keep reading, meditating and tapping.

Hopefully my next post is about what it feels like to be on drugs.

Until then, wish us luck.  Please.