Thoughts on Redundancy 

I have often wondered in the past 12 months whether to officially park this blog or disable it as its purpose – bringing my spirit baby home – was achieved (thanks be to God, the Universe, my Obstetrician, my Reproductive Immunologist and my tenacity). 

And it’s tough not feeling guilty for throwing my success in the faces of my sisters who soldier on – I remember the anguish posts by those who had living children evoked in me before the MT and by those who had more than one while we endured failure after failure on the road to bringing home our spirit baby. 

But enough about me. This post is about the blog and what purpose I envision it serving going forward. The thought that maybe it could help others has fuelled my ambivalence and the hesitance to disable or abandon it with deliberation (as opposed to the inadvertent neglect born of a busy job and busier couple of boys that’s resulted from Life in the past 12 months and especially since I returned to work last December). 

You see, every so often I get an email from a stranger who has stumbled across my humble blog. I’m always surprised by this as I’ve never marketed or cross-posted on twit.ter or insta.gram to increase traffic or otherwise. Candidly I have always considered this space primarily self serving and at best entertaining. Now that I have little to no time in which to write and post here the space began to feel redundant. What was I adding tithe blogosphere that warranted keeping this site alive?

For better or worse I haven’t found time of lard to give that question prolonged thought. Admittedly it has always been my hope that if someone came here needing help or information or a friend in recurrent loss, she or he would feel welcome to contact me. Each time I am contacted I respond genuinely and as generously as life permits. 

Late last week someone from the company that maintains Dr. Braverman’s website contacted me. He said some things that surprised me and made me reflect anew on what this blog has to offer and how I could be part of expanding options for others struggling with recurrent pregnancy loss or unexplained infertility that may have immunological causes. 

In the end I accepted his invitation to post a link to Dr. Braverman’s website not to increase my doctor’s wealth. He needs no help in that department (a fact of which I’m regularly reminded as I continue to pay down the debt a year past our spirit baby’s first birthday). Rather, I wanted to make it easier for women and couples needing help – like I did – to find me and to find him and other available options. 

In short I wanted to make this space feel less redundant. Notwithstanding my neglect of it these days. To do that I’ve made a long overdue update to my profile page (see here) that now includes a direct link to Dr. B’s website. 

Meanwhile I’ve tried cutting myself some slack for the neglect. 

There are posts I’ve wanted to write and grief I’ve been processing that I’ve considered sharing here. But for now the order of the day is “Life rules”.

A very quick update

Azulito/a’s scheduled birth date is still June 9, 2015. 

The placenta has not moved at all from my last ultrasound three weeks ago. A cesarean delivery is mandatory. 
Thank you thank you thank you for your tremendous outpouring of support and kindness in response to my last post. 

I am going to try my best to mentally prepare myself for the possibility that I may need an emergency hysterectomy on June 9th if the risk of placenta accreta (placenta invading uterine wall, posing risk of mom bleeding to death if not medically resolved, the most extreme means of which is removal of the entire uterus) becomes reality. I am going to will that not to happen but want to stay as calm as possible if it does. So that will be my new project.

That and surviving this awful nausea for the next 13 days. 

I have to go back for one more ultrasound at the Perinatology (Maternal Fetal Medicine) Clinic on June 8th to make sure things remain on track. 

Today baby A was estimated to weigh 6 lbs 4 oz – only a couple of ounces less than what the Miracle Toddler weighed at birth. Of course that estimate can be off by up to one pound at this late stage so the little one could weigh 5 lbs or 7 lbs or anywhere in between! 

We are at T minus 13 days and counting, folks. Holy mackerel!

The Mystery Remains Unsolved

To you lovely friends who offered comforting words and condolences yesterday evening about the pain and sleep deprivation I’ve been experiencing lately: Thank you from the bottom of my heart. Your kind words, wishes and prayers meant so much. 

And they may have worked! I got some sleep last night. Still interrupted by pain jags but much more sleep overall than in many days.

At the hospital, we eliminated all serious conditions that could be causing the pain: pulmonary embolus, lung infection, enlarged or dysfunctional spleen, low platelets, signs of infection via blood test. Thankfully, all of those were ruled out. That’s the good news. 
The not-so-good news is that they cannot give me anything I can take for the pain. The only drugs they recommended at this late stage when the baby (whose liver is far more vulnerable than ours) would get it too are Tylenol and Tylenol 3 (with codeine). I am allergic to a filler or bonding component that’s used in codeine; drugs containing it make me throw up (a rather violent action I’ve been trying hard to avoid). So that’s not an option. Darn. 

The pain is likely a result of inflamed rib joints and surrounding tissue which has gotten worse rather than better – mysteriously – over the past couple of weeks since I injured them coughing my lungs clear. Because Azulito is a big-time mover and shaker, I suspect that the kicks and jabs to that area (which are very painful unlike the kicks to the same spot on my other side, which are just slightly uncomfortable) and the muscle spasms they bring on (man, those hurt! And take my breath away) are largely to blame. 

I also think that the LP’s insanely busy work schedule replete with long hours that mean I’ve been flying solo with the Miracle Toddler much more than usual for the past several weeks and the MT’s decision to become my Velcro-child recently (insisting I pick him up and carry him often or endure his sobs and anguished expressions) are not helping me heal the bruised ribs and surrounding tissue. There is no easy remedy for either of those at the moment, unfortunately. 
Last night I took two extra-strength Tylenol and 3 mg of Melatonin. The latter knocks me out when I’m not pregnant. I do not usually take it while pregnant because of the conflicting information about its safety to baby. Last night I was desperate. And I slept more than I have since Wednesday night of last week. Sorry, Azulito/a, if I made you drowsy or screwed you up in any other way last night. Your mommy needed some rest. 

I am truly hopeful that this is the last time I feel compelled to go to L&D on an emergent basis to rule out any serious issues that could impact the safety of baby or me in this pregnancy. Three visits like this are enough. Only three weeks and one day left for my placenta and baby A to hang in there. Thank goodness the end is near. 

And thank goodness for all of you. Thank you again for your love, kindness, support, prayers and sweet words – both when I was stuck in the hospital last night and always. 

Persistent Pain, I Hate You

I’m at the hospital. Labour and Delivery. Again. 

I am here to get this persistent and at times debilitating pain in my upper left abdomen, just below and behind my ribcage, checked out. I have not been able to sleep more than 30 to 60 minutes at a time the past several nights (and earlier today when I desperately tried napping) before the pain wakes me up. Tylenol does nothing for it. 

There is something about constant pain and sleep deprivation that ribs me of my emotional stability and repeatedly reduces me to tears or near-tears in a flash. I feel like a lousy parent because I can’t do much with the MT and have no energy or endurance when (understandably) he is frustrated and disappointed. He was so sweet today, playing by himself and picking me a gazillion dandelions to cheer me up (I am allergic to dandelions according to my last immunologist but whatever, these are still yellow and not spewing their pestilent pollen). I was looking forward to taking him out today. That did not happen. 

I’ve seen the Resident on duty (who is very kind and remembered me from my first of these three visits to L&D back at 20 weeks) and she has said she is not too sure what to do with me as the only risks from where this pain is are blood clot (not likely since I’m on Lovenox), lungs (they checked my oxygen saturation as step one to rule that out – it was 97% – and are waiting on ordering a chest X-ray as some radiation does pass to baby), spleen and otherwise musculature.  

In Chinese medicine the spleen channel is associated with excema around the eyes (the return of which about 5 weeks ago necessitated my going back on prednisone). I wonder if there is anything to that?

I have been poked and palpated (ouch!! on the left side), had blood drawn and expressed my reservation about the X-ray unless it’s strongly recommended. If platelets are low I will likely need an ultrasound to look at the spleen. The Resident said it is very unusual for a mom to develop a spleen issue during pregnancy, however. Not impossible but unlikely. May I not be the statistical minority once again (cholestasis, which led to the MT’s emergency induction, is also a rare occurrence). 

For now we wait and see. 
Being the mystery patient kind of sucks.  At the same time, I suppose it’s better than being told there is something seriously wrong. The Resident was reassuring as well, saying that since I’m almost 34 weeks now even if something requires that Azulito/a arrive earlier than scheduled, we may not even need steroids for baby’s lungs. 

The LP and MT have been waiting for me nearby but I can’t see them. I wish they were here in this sterile room with me. I miss them and I feel a little stupid for being here as the unexplained case (again).  

My nurse, while clearly skilled, is not pleasant.  I hate drawing the chilly nurse who leaves me feeling disbelieved, as though I am a hypochondriac of a pain-wimp (I’m neither). I don’t think people with that mindset or who exude they attitude should be in this profession (or at least should not work in L&D). If I were in charge…

Anyway.  Here I am.  In the hospital. Uncomfortable. Sleep deprived. And hating on this mystery pain in my upper left quadrant.  Curse you, pain. You suck. 

As I was about to sign off the Resident returned and said the OB on call (who did my lady D&C) said we need the chest X-ray to rule out a lung issue. The Resident gave me stats on the risk and I have signed the consent. Now I wait for that and the blood test results to come back. 

Meanwhile, Azulito/a has been busy busy busy. That is the good news in all of this. 

Fingers crossed that we get some answers and a way to let me sleep before this little person makes a long-awaited arrival. 

We have a date (and a change of heart)

I am now officially scheduled to deliver  baby Azulito/a on Tuesday, June 9, 2015 via ceasarean section. 

I have spent the past several months being upset and frustrated that I would not likely have a chance to deliver this baby as I did the MT, without surgical intervention.  Last week a glimmer of hope appeared – maybe my placenta would move enough and I would have the opportunity to attempt a vaginal delivery.  Along with that glimmer came a dark cloud: the risk of an emergency hysterectomy.  

I have spent much of the past week worrying about this. Ultimately I decided in consult with the LP that I would prefer to avoid risking an emergency trip to the OR more than insisting on a vaginal delivery (or an attempted one), if that even becomes an option. I  going to speak with my OB next week about this but that’s where I am presently leaning. 

Stay tuned!

A Short Update: Good News and New Worries

Yesterday’s appointments went well for the largest part. I got to push Baby Azulito’s head out of the way (is it creepy I felt accomplished having an actual role in an ultrasound if it involved shoving my kid’s head around?). I didn’t cry once. I felt lighter and more grounded by the time our anniversary dinner rolled around. 

Baby A is estimated to weigh 4 lbs 9 oz at 32w1d. That sounds huge to me this early. The Miracle Toddler was nowhere near that size by this point although he ended up a good size at birth thankfully (~6.5 lbs). Way to grow, Azulito/a! It is a relief not to be facing any sign of Intra-Uterine Growth Restriction (IUGR) at this point since I’m at elevated risk for that with my autoimmune issues. 

The pediatric urologist was very lovely. She says that “architecturally” baby’s kidneys are perfect-looking and that there are no presently visible signs of a medical problem with their operation. Because of this she is hopeful that in time the determination will be made that this kid simply has large kidneys and nothing more serious than the need for monitoring through his/her early life. 
We will have an ultrasound at her office in the local Children’s Hospital at 6 weeks after baby’s birth.  If no red flags appear then, baby will likely be checked once a year for a few years unless something changes. If red flags do appear we may be sent to the kidney specialist at the teaching hospital for more testing.  Fingers crossed that this all works out fine in the end. 

In other promising news (this is where I got to push baby’s head out of the way so the Perinatologist could measure the space between the edge of my placenta and cervical opening (OS)): My placenta has moved! Not enough to no longer be classified as placenta previa but 1.4 cm. This means that if it moves at least another 0.6 cm I may be cleared to try for a vaginal delivery. I will get rechecked, as will Baby A, on May 27th at 35 weeks. Fingers crossed on this front too!

The energy healer was not really “out there” to me at all. She is so much more reserved and demure (introspective?) in person than in her web presence. I have really no idea what she did or how apart from the fact that she did Reiki first then Yuen method for energetic clearing but I felt much more grounded and relaxed afterward. That was fantastic. 

She said some things about what she cleared that threw me for a little loop. The biggest one was that in a past life I was persecuted and this was interesting to her being that now I practice law.  (I think it better explains my activist youth and younger adulthood actually but that’s because the law I do now is primarily about other people’s money and corporate divorces. Nothing noble, really, except my pro bono work.) 

I had a persistent sense of Azulito/a and my late Mom being present throughout the treatment.  Afterward, I definitely felt my feet more rooted to the earth and my emotional and spiritual energy vibrating lower and more peacefully. All good even if I have no clue why or what happened during most of the hour I spent there. 

As for the scary news: I asked the Perinatologist (MFM) about what my OB had said the day before regarding the risk of my needing an emergency hysterectomy.  The MFM said that this could be due to placenta accreta (where the placenta invades the uterine wall) for which I’m at risk or because the lower part of the uterus does not contract like the upper portion does and has much more vascularization generally (more blood vessels, less natural ability to stop bleeding in lay terms) and sometimes bleeding with low-lying placentas cannot be stopped due to these factors, resulting in an emergency hysterectomy. 

Upon reflection that left me with a new question I plan to ask my OB on May 20th. I spoke with the LP about this last night and we agreed that if vaginal delivery is discouraged even if my placenta moves enough I will accept the scheduled cesarean over running the risk of delivering vaginally and then being rushed to the OR for an emergency hysterectomy. One more thing to worry about. Darn it. 

The anniversary dinner date last night was awesome. I gorged on seafood (Lobster Bisque and Lobster and Giant Prawn Thermidor, taking an extra antihistamine and some tummy meds for the dairy allergy) and the LP had to-die-for mushroom soup and a veal chop.  (I cannot bear the thought of veal calves suffering so have never and will never eat veal and the LP does not eat it except at this restaurant which supports locally and responsibly raised livestock.). 

We know the restaurant owner and he was so happy to see us and brought us a special dessert with “Happy Anniversary” beautifully written in dark chocolate on the plate (which we sampled even though we were both stuffed beyond belief). Our server also recognized us and made me a fancy mocktail while the LP had a lovely Pinot Noir. It was wonderful and recalling the evening and our love for each other now brings tears to my eyes. I also got a beautiful new necklace that touched my heart – it’s made with a stone my Mom introduced me to with beautiful earrings late in her life. 

In other news: My left-side bruised rib is killing me… Last night it hurt so much I was whimpering as I tried to get comfortable at bed time. I hope this doesn’t take as long as an actually cracked rib to heal. It woke me up and resulted in me writing this post, however, so I suppose it’s not all bad!

Thank you all so much for your kind words and warm wishes yesterday. They mean so much to me, as you do. 

As the Baby Turns – 32w1d and Counting

The fun continues!

Baby Azulito/a has officially turned into head-down position. That may be mostly pointless considering that unless this placenta previa and risk of placenta accreta situation resolves itself, I will be having surgery to deliver this baby but I understand that in Chinese Medicine having baby aligned vertically is important regardless of the delivery method so I’m counting this as a blessing. At least until the baby turns again (which could happen, the little one hasn’t been the most compliant with plans to date).

At yesterday’s OB appointment I was reminded that I’m at risk of having an emergency hysterectomy following the baby’s delivery if my imperfect placenta does not release from the wall of my uterus (or has invaded it, which can be difficult to determine on ultrasound with certainty, I’m told). I know that my OB has to make sure that I understand that this is a risk but I could have lived without the reminder. It is much easier not to worry about something when the last time it was mentioned is more than 3 months ago. The risk of this happening is not great – which is awesome – but the fact that it is a risk at all brings me to my knees every time I think about it. Plan: Do not think about it. And no visits to Dr. Google.

I have been coughing so hard from the respiratory flu I contracted (thank you, LP) a few weeks ago that I’ve pulled muscles and am now experiencing the equivalent of bruised ribs on both sides (worse on the left). This was confirmed by my OB yesterday as being just that and not something more serious, thankfully. Still, the coughing gets me up every night and has worn me out most days. My kingdom for some cough syrup or a good sedative.

I’m now 32 weeks which means about 5 weeks to go. Yesterday I discovered that the scheduled caesarean was mis-scheduled for almost 39 weeks. I felt and heard the panic in my voice as I challenged the date at my OB appointment. I barely contained myself from bursting into tears with my OB. He immediately acknowledged this was not in accordance with his instructions (his instructions were 37 or 37.5 weeks), said he’d have the surgery rescheduled and left a note on my chart instructing the staff to call me with the correct date. The risk of going to 39 weeks is stillbirth, of course, and my anxiety over that has been at an all-time high this past month so I really did not need that emotional kick in the cajones yesterday. I have yet to receive a phone call and I will be calling tomorrow if I have not heard by then. Call me distinctly unhappy about this hiccup.

In other news, I have our next follow-up and first biophysical profile (BPP) ultrasound with the Perinatology (Maternal Fetal Medicine) Clinic at our local women’s hospital later this morning (very soon, in fact). I am praying that baby Azulito/a passes that test with flying colours because more worries is something I can live without. I am also scheduled to speak with the Pediatric Urologist about those enlarged kidneys, what they could mean, how any medical issue with them might get diagnosed after delivery and what treatments could be required if they are not simply “large normal” or don’t resolve on their own as everyone hopes.

The LP is in trial today so I’m going it alone at these two medical appointments (same with yesterday’s little chat about placenta accreta, hysterectomy and messed up delivery dates). This is probably better for him in the sense that he is able to stress and worry less when he is not face-to-face with these realities but I do wish things were otherwise and he could be with me. My nerves feel jangled.

On that note and how to unjangle: Later today, I will be seeing an energy healer whom I’ve never met before. She’s trained in Reiki, Yuen Method and Trilotherapy. If any of you have experience with the latter two practices, I’d love to hear from you! My long-time TCMD and acupuncturist recommended I see this woman after I admitted to being at a breaking point last week emotionally from being sick with the flu, sick with morning sickness that has debilitated me despite the drugs lately, and being scared of this baby not making it out of me alive. She suggested it did not seem to be something physical in origin but energetic or spiritual. I’ve been warned that this healer is “a little out there”. We shall see. It cannot hurt. I hope.

Finally, tonight the LP and I are going on a date (!?!) to celebrate our fifth wedding anniversary. When we got married, I wanted to go to Italy and be married with two witnesses and nothing else. The LP wanted a big wedding. We did the latter and the deal was that by our 5th anniversary we’d make that trip to Italy that I wanted (I really wanted to get married on the Amalfi coast. Cliché perhaps, I know, but call me romantic and in need of an exotic honeymoon). Well, that’s not going to happen. This is our fifth and we are so in debt as a result of the past two and a half years of trying to have a second living child that a trip to Europe is out of the question. Maybe for our tenth?

It’s weird to think about the fact that we’ve been together for over 8 years… almost 9 years though officially only eight and a half… we have been through so much, suffered so many heartaches and heartbreaks. We each wear many scars from our prior lives and from the wounds that came with forging a life and trying to build a family together. I started trying to get pregnant before we were even married… wow. It has been a rather lengthy and complicated journey. Ten pregnancies later, here I am… praying that baby Azulito/a comes home in our arms, safe and sound, in another 5-ish weeks and celebrating five years of marriage to my soul mate.

Excuse me whilst I wipe away the tears.

It will be a busy day. Wish us luck. Please.

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.

BUNNIES!!! (And Other, Less Random Good News)

 

This morning after prying open my garage door frozen shut with a recent thaw/freeze cycle I came across not one or two but three large white hares as I made my way to work in the wee hours (necessitated by my spending the day at home yesterday with the Miracle Toddler who was battling a wicked cough and some bug he appears to have caught with the same thaw/freeze cycle).  I have previously written about how I love hares and that I associate them with positive events to come in my fertility/recurrent pregnancy loss journey.  I have even dreamed of hares teaching me things on this journey. 

 

Let’s face it, it’s hard not to love a bunny (unless you’re a farmer or an avid gardener, I suppose).  To spot three of them – and have to stop my vehicle and issue  each of them a warm greeting as I gave them room and time to find a new path to travel safely out of range of mine – within minutes of each other got my day off to an amazing start. 

 

The bunnies also reinforced the good news I got late yesterday from Dr. Braverman. Without further ado, here it is:

 

·         Almost all of my cellular inflammation has come down from the very elevated levels found in my late December blood work. 

·         One notable exception is my level of IL-10, which is a marker for serious third trimester complications for which we are already watching and about which we are already painfully aware. Thankfully my IL-10 level is still hovering at normal range despite having risen. 

·         I am to start halving my dose of Prednisone weekly until I get to 2.5 mg on which I should stay for a final week. 

·         I am to continue weekly Intralipid IV treatments until 28 weeks.

·         No more trips to New York City for blood tests or to pick up Intralipids (smart move on my part stockpiling IL bags during my last trip!).

 

Dr. Braverman’s view is that the aggressive treatment with high Prednisone doses and more frequent Intralipid infusions has made the difference.  In his opinion more immune panel blood work and monitoring will not change the outcome even if I have a further immune flare in the third trimester.  He has asked that I keep him in the loop and feel free to consult him about any new developments even though any medical decisions are mine to make.  All of this means that I do not need to return to New York or make other arrangements to do any more blood work through Reprosource.  That is a relief and another major financial expense eliminated.  This advice of course is premised in part on the promise locally to continue monitoring this pregnancy, my placenta, baby’s growth and development and general wellness and regular testing and monitoring (by me and my local doctors) for those pesky “serious third trimester complications” for which I’ve got plenty of markers.

 

I will be honest.  As much as I am relieved by this news and as much as I despise the side effects of Prednisone, I am afraid to go completely off of it.  Heck, I’m afraid to wean from the 20 mg I am currently taking.  I am afraid of things going sideways.  Nevertheless, I will continue weaning.  I will start early next week (because I just weaned to 20 mg this week).  I  think I may go down from 20 mg to 15 mg first and then to 10 mg, 5 mg and finally 2.5 mg.  I am currently 22 weeks so this will keep me on a low dose of Prednisone past the 24-week mark by which  Dr. Braverman originally wanted to ensure I was off this drug.  Even he acknowledged a while ago I would not get off this drug completely by 24 weeks.  


One of my concerns is that I have had rebound reactions when I’ve dropped too quickly or too much at a time below 20 mg and I would really like to avoid that this time since the stakes here are so much higher than on any other occasion when I’ve taken this steroid.  Plus my OB a few weeks ago speculated that the Prednisone may increase my chances of avoiding a repeat of the Cholestasis I developed in the MT’s pregnancy.  He is not aware of studies confirming that but it’s his gut feeling. And we all know I am rather big on gut feelings.


I need to get back to work and thus bid you all a Happy Humpday for now. I also leave you with some rabbit art I did last year.  Who wouldn’t love this bright and cheery bunny?




Curveball #47: I “failed” the first test for Gestational Diabetes

Because life and this pregnancy have not mounted enough hurdles in my path yet, today I found out that I “failed” the GDM (Gestational Diabetes Mellitus) test I took last week as requisitioned by my MFM (maternal fetal medicine specialist). The cut-off for “normal” is 7.7 mmol/l. Anything equal to or greater than 11.0 results in an automatic diagnosis of GDM. Mine was 10.7. Not great.

I was uncharacteristically upset about this all morning. I have taken the previa and even the risk of placenta accreta diagnoses more-or-less in stride, but this GDM news had me throwing a pity party and angry with the Universe and God (why me? why now? why this? can’t you cut me a break for a few weeks here?). Things may not be as bad as I feel right now, apparently. I asked Dr. Braverman if he thinks there is any chance this could change (assuming I fail the second test, the fasting 2-hour test, this Thursday, which my Ob considered somewhat likely given I’m still on 40 mg of Prednisone until at least next week) assuming I can get off the steroids or remain stable immunologically on a lower dose (say 20 mg). He said that he’s not a fan of testing and treating GDM before 24 weeks as a firm diagnosis because many patients no longer have blood sugar metabolism issues after they stop Prednisone (which he aims for by 24 weeks if possible).

We saw my ObGyn for the first time this pregnancy this morning. He was awesome at its finest, being supportive of the work we’ve done with Dr. Braverman, explaining what the MFM wrote in her report on last Wednesday’s ultrasound, and generally discussing in a calm, non-alarmist fashion the pros and cons of everything we are doing to keep this pregnancy going and my health risks and those to baby as low as possible. He is always non-alarmist and never condescends to the LP and I, which I appreciate. Today was no exception. He said he will be doing his job and is comfortable letting Braverman call the shots on the immune meds front and to work with the MFM in any further recommendations she may have as she monitors baby and me going forward.

Do you hear that, Azulito/a? We have a team in place for you!

Even though my GP has not yet transferred my care so my OB’s nurse had to look up some of my test results and reports, I decided immediately after our appointment this morning to cancel my last scheduled appointment with my GP and say so long to the stress that is having to wrestle with her disbelief and exasperating “not medically necessary” nonsensical comments at each appointment. Hasta luego o casi nunca, doctora! There is a headache I can live without.

It is such a relief to have a team of doctors taking us seriously and all aiming for a common goal – to support me and this baby to be as safe and healthy as possible until the optimal time for Azulito/a to make her/his entrance into the world outside my womb.

In closing out this wee update, I want to give the Miracle Toddler and the LP a big shout-out.

The LP has been very loving and kind and trying hard to parent as a team with the novel challenges the Miracle Toddler has been mounting of late. Despite having four trials (one lasting over two months) scheduled in March through June and a crazy busy practice generally, he has come with me to all of the scary appointments lately. For this I am deeply grateful. Even if he says almost nothing, his presence lends me strength and a calm I dearly need (the irony of this is lost on most of you but given that the LP is one of the most highly-strung humans I have ever met, trust me when I say there is some irony in this).

The Miracle Toddler has made generous and heartfelt offerings of his own. He has moved me to tears (only rarely of frustration). His newest thing is to tell me multiple times every day that (a) he loves me (and his daddy); and (b) he loves this baby. When I talked to him on the phone from New York yesterday he said “is baby still in your tummy?” and “I love your baby” when I confirmed that baby was still there. I think he likes it when I tell him that I believe he will be the best big brother ever (in case anyone wants to challenge me for using hierarchical language, please note that as the MT’s mother I own without shame or reservation that I will – without hesitation – award him first place even if your kid is a more capable or equally loving sibling. In case you’re wondering, I would expect no less of you.). It melts my heart every time he says “I love your baby” and “I love you, Mom.”

And that, my friends, is enough to keep me going, potential GDM diagnosis and all of the other hiccups and messy stuff being what they may.

The Overdue Update – Good News and Not-So-Good News

Wednesday’s appointment with the Maternal Fetal Medicine specialist (aka Perinatologist) was long. Three hours at the hospital long.

An hour of that involved a very detailed Level II Ultrasound. Just over half an hour involved speaking with the MFM and an OB Resident completing her residency in MFM. They were both very helpful, calm, pleasant and kind. Two thumbs up there. Let’s call them Laverne and Shirley.

Laverne and Shirley confirmed and advised us that:

1. Azulito/a does not have an open neural tube defect including Spina Bifida or anencephaly. That is the unabashedly excellent news.

2. I have several large lakes (pools of blood and/or clots) in this baby’s placenta (as I did with the Miracle Toddler’s placenta). This when combined with (a) a high level of alpha-fetoprotein (AFP) at ~16 weeks as I had (yielding the positive maternal serum screen result for Spina Bifida) and (b) high inflammatory cytokine (including NK) levels as I have had in the testing done during this pregnancy through Dr. Braverman’s office put me at risk of placenta accreta or placenta percreta though the latter is much more rare.

3. I am at increased risk of baby developing intrauterine growth restriction (IUGR) and preeclampsia as a result of the problems evident with my placenta. This warrants further monitoring as the second trimester draws closer to an end and I approach the third. This was the same advice Dr. Braverman gave me and my family doctor blew off.

4. Placenta previa diagnosis is confirmed and that also needs to be monitored. There shall be no further intercourse. If I see so much as a hint of blood I am to go to emergency immediately. I am to refuse all internal exams and advise I’ve been diagnosed with placenta previa. This sounds very dramatic but truthfully it is the least of my worries at this moment. It could resolve itself although Laverne and Shirley noted that the placenta has not moved in the past 3 weeks despite notable growth in the size of my uterus. This goes on the wait-and-see list for me, without any fanfare to speak of.

Both placenta accreta and percreta are serious. They basically involve the placenta invading either the uterus or surrounding organs. Not good may be understating it. When not diagnosed and treated this has led women to bleed to death during childbirth. Thankfully I will be monitored every 3-4 weeks if no further complications are detected (more often if so) starting at 25 weeks. My next MFM clinic ultrasound is March 19, 2015. Amen for that.

Dr. Braverman said the placental lakes indicate poor vascularization. Of course he had forecast this being certain to develop if untreated due to my various genetic and inflammatory immune issues. The fact that we are seeing this despite aggressive treatment is disappointing but in his view not surprising and consistent with my blood test results of the past few months. While I wish I had fallen on the lucky side of that line I am deeply grateful that my immune issues and I are finally being taken seriously here at home (by everyone but my family doctor so far it seems). I am so relieved not to have to keep fighting my family doctor’s skepticism and endless challenges or push-back to the risks Dr. Braverman has identified.

I will end this here on that note of gratitude and add to it my deep and enduring appreciation for all of the love, support and kindness you have shown me and Azulito/a on this journey. From the bottom of my heart: Thank you, friends.

Cautiously Optimistic and Other Mixed Emotions

This will be brief out of necessity but I wanted to update because I know some of you are likely worrying as I have been.

I was finally able to obtain a copy of last week Thursday’s follow-up anatomy scan to assess, in part, the risk of Azulito/a having an open neural tube defect (or anencephaly) due to my positive screen for elevated alpha-fetoprotein last month. It does not say much except “normal” for both the brain and spinal cord components.

Incidentally, the report also mentions that my currently low-lying placenta is “posterior” but appear to be entirely cover the internal cervical os, meaning we have a placenta previa diagnosis right now (as in the previous week’s ultrasound) but that could change in the coming weeks. In the context of everything else that we are facing and have been facing, I am not losing any sleep over this right now. So I may need a c-section. Or I may not. That would have been very upsetting to me 5 years ago. Now it’s no big deal. Truthfully, it is barely even on my radar. Funny how context can change perspectives.

Because my family doctor likes to kick me when I’m down, apparently, I should mention that she had her nurse tell me I was required to drive to the clinic (in lousy road conditions and during rush hour, I might add – there have been a large number of motor vehicle accidents in our city over the past 24 hours) to pay $10 before they would release my report to me. Really? It is not the ten bucks. It is that demanding I pay that first meant I could not get my result faxed to me and had to waste an hour of my day travelling there and back, paying the lousy $10 and proving I’d paid to get the copy. They could simply have told me the results over the phone – would that have been so difficult? Suffice to say I will be looking for a new doctor for me and the Miracle Toddler at some point in the foreseeable future.

In other news: another recent medical appointment and two upcoming ones.

1. Yesterday I saw the Immunologist to whom my family doctor had referred me. I liked her a fair bit. She read through the reports from Dr. Braverman and was very impressed at the scope and nature of testing and the care I’m receiving. She commented on not wanting to imagine how much that has cost me but noted that she felt I was getting very good care and was wise to continue to have my immune system function monitored given how things have unfolded. We had a good discussion about how she wishes to help me after this pregnancy is over, some helpful suggestions for allergy testing on the Miracle Toddler and managing his one known (suspected until proven through testing) allergy for now and she prescribed me a nasal steroid to help with the blocked nose that’s contributing to my lousy sleep experiences lately.

2. Tomorrow is our Level II Ultrasound at the hospital and meeting with the Perinatologist. I am still worried because I know that things can be missed on routine ultrasounds performed by technicians and not reviewed by perinatologists (maternal-fetal medicine specialists). But I am relieved to be heading into tomorrow’s appointment with less sheer terror and anxiety than the condition in which I’ve spent the past week and particularly the past 4 days since last Thursday’s ultrasound.

3. Next Tuesday I see my ObGyn for the first time since I was pregnant with the Miracle Toddler. I am both hopeful and deeply anxious. He is the head of high risk obstetrics at our chosen hospital and in the past I really liked him both as an expert in the field and a treating doctor. My family doctor’s constant second-guessing the legitimacy of my immunological issues and Dr. Braverman’s recommendations has tested my confidence in whether my ObGyn will take a similar approach. I really do not want to go shopping for a new Ob, though if that’s necessary I will do so. What choice would I have? The LP plans to come at my request. I need him there to keep my poop together should the doctor say anything particularly foolish or dismissive. At this point, my patience has worn gossamer-thin.

On that ambivalent note, I bid thee farewell until next update. Thank you – each and every one of you – for reading, hoping, praying, thinking of us and generally adding your pleas for positive outcomes to our own. I am so grateful, more than you may ever know.

Nuchal Update

* pregnancy mentioned *

This will have to be brief. Life is moving at lightning speed and I am dead tired almost all the time. But I don’t want you all to worry so here goes.

Belligerent baby would not cooperate with the Nuchal Translucency scan yesterday. It took a very very long time, much repositioning, forced coughing, distressed bladder, drained bladder and more repositioning and coughing before there were finally enough measurements for us to avoid having to repeat the scan next week. The NT measurement was 1.10 which is perfect I think. Baby was measuring 60.1mm, putting it at 12w4d or a week ahead by transfer date, 6 days ahead from my 6-week dating ultrasound. By the due date Dr. B gave me at that first ultrasound I am 11w6d today.

I get to stop the PIO injections and Estrace tablets and suppositories tomorrow or Thursday cold turkey. I am a little worried how I will feel then and through the transition off of them but hopefully all will be well in time. I expect the dry skin I usually have in pregnancy to crop up so I have bought a small humidifier for my office and may get a second one for our bedroom. Our old one died.

I am to stop Neupogen soon too but will stay on Lovenox throughout the pregnancy, Prednisone as necessary no later than 20 weeks and Intralipid as long as necessary based on immune monitoring, the next round of which is next week Monday with results to follow in about two weeks.

After today I am reducing to bi-weekly acupuncture unless my anxiety levels or liver or other channels start acting up. The times they are a changing. I am trying to feel positive about all of this. Much of the time these days I feel as though I am barely keeping it together.

The worry never leaves but with the abatement of immune symptoms now that I am on 60 mg of Prednisone (which is wreaking havoc on my emotional stability, parenting and vocabulary, let me tell you) I feel a little less paranoid. One day at a time. Please, little baby, please stick around.

Some Good News to Start a New Week

This will be brief but much more upbeat than my last couple of posts.

Today’s ultrasound brought some much needed relief. Azulito/a is measuring a full week ahead, looking like a teeny person (except in 3d when s/he appears rather alien), and had a heart rate of 176 this morning.

I know we are not out of the woods but for today I am both deeply grateful and viscerally relieved. I hope that measuring big is not a sign of something bad I don’t know about (since I’ve always measured behind even in our one ultimately successful pregnancy). I’ve asked Dr. B to avoid any more unnecessary surprises but I truly hope his answer is along the lines of “of course not” rather than “only if it when…”

Thank you all so very much for your warmth, friendship, support, love and company. You really do make a difference.

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.

I am Still Alive and so is Baby

* pregnancy mentioned *

In case you’re wondering… I am still kicking about and so is Azulito.

It was a very busy week at work and I got some really devastating news on Thursday morning that a close friend had died suddenly and unexpectedly on Wednesday afternoon. I was a mess all day Thursday and eventually went home early and to bed.

As fates would align, I was also blessed with bad morning (meaning all day and evening) sickness and the most intense exhaustion I can remember short of the day after an all-nighter this past week. I actually fell asleep sitting at my desk four times with past week. I need to start closing my door so passers-by don’t wonder if I have developed a case of narcolepsy.

The LP and I got to see baby together on Friday. The little munchkin had very obvious leg and arm buds and a great big noggin. The technician tried to arrest my heart. She said baby was measuring one day behind my dates based on transfer – meaning it was measuring 9w1d, the same as s/he had measured four days earlier at Dr. Braverman’s office. My stomach flipped and my heart raced and leapt into my throat. I asked her how that could be since baby looked bigger and had measured that size four days ago.

She insisted I was just paranoid from all of my losses and tried to explain how a “proper” crown-rump length (CRL) measurement is taken. I wanted to smack her and let her know I could probably do her job by now and that I was pretty sure she and her equipment were not more accurate than my Reproductive Immunologist and his wares. I gave her my best “lady, you are about to kill me or me you” look. She tried again. 9w5d. As egos would have it she maintained her first measurement had been accurate but said she would take 3 and average them. The average was 9w4d but I know the last two were 9w5d so I am going with that and hoping I don’t get the same technician next time.

I am still really tired all the time and that – coupled with passing out at my desk – means I’m behind at work. And that means this post ends here do I can finish up some work and go home to my boys and my four legged girl.

I hope everyone in the good old US of A enjoyed a safe and love-filled holiday (or survived insufferable relatives if not). I am officially excited about the coming Christmas holidays even if I sometimes wonder whether I married Ebenezer Scrooge reincarnate.

Bureaucracy and Unnecessary Stress – Updated with Ultrasound Results

On Tuesday morning I awoke from a bad dream in which this baby’s heart had stopped. It came out of the blue and shook me to my bones. I had been intending to cancel this Friday’s (today’s) upcoming ultrasound because it is so close to when I will see Dr. Braverman on Monday. The dream caused enough unrest for me not to follow through on the cancellation plan. I am going for ultrasound number three later today. The lump in my throat as I type those words is palpable.

On Wednesday morning I called my general practitioner’s office the second they opened to ask if I could pick up a copy of my ultrasound report from last Friday to send to Dr. Braverman (and to add to my binder of personal health records because that’s the kind of obsessive behaviour that turns my crank). After leaving a detailed message for my doctor’s amazing nurse/assistant and getting a clarifying phone call from a complete stranger who happens to be sitting at said nurse/assistant’s desk this week (hopefully because said nurse is on vacation), I spent the day waiting and waiting and waiting.

Mid-afternoon I left another message. Very late in the day I got an alarming call back. The stranger had spoken to my doctor who reportedly said:

* she didn’t think that weekly or biweekly ultrasounds were medically necessary (even though she never told me that when she requisitioned them for me on November 10, 2014);

* she remains concerned that our public health care provider may refuse to cover the costs of these ultrasounds and therefore they may not be insured services (presumably because they are not medically necessary in my doctor’s current opinion (?));

* she was not comfortable giving me any more of my personal health records without consulting the clinic’s medico-legal representatives; and

* I may have to complete some paperwork, wait and pay some money to obtain my records but my doctor and the stranger would not be able to tell me anything further until Thursday because the medico-legal people had left for the day.

To say I was upset and stressed out by this development is an understatement. To say the timing was terrible is trite. The tailspin and fury that followed ruined my evening and disrupted my sleep. Deep down, I felt abandoned by my doctor – the same doctor who has seen me through all but the very first of our eight pregnancy losses, the same doctor with whom I have shared both of my comprehensive immune diagnosis and monitoring reports from Dr. Braverman – and fearful that this is the kind of crap I will be facing throughout this pregnancy if we are fortunate enough to see it continue.

I raged against what I have come to behold as a hateful Canadian public health care system. The irony is not lost on me that the LP and I pay a disproportionately high amount for this abysmal system (clearly for others’ use of it since my own access to it has been thwarted at many turns and remains tenuous with respect to the current pregnancy apparently). Once again I found myself saying I would rather pay for private health insurance and have the option to truly choose my care providers and care than live here under this oppressive regime of sub-par care and doctors more concerned about getting paid for their services in a model that wants to refuse payment for anything that may not be “medically necessary” in their draconian view.

In case you fear l lost my mind and am now incarcerated because I brought an assault rifle to either my doctor’s or the public health provider’s office (because I contemplated it – do these people who mess with me at this point forget I am completely hormonal and jacked up on steroids?), there is – or may be, time will tell – a less unpleasant ending to this story than the above would suggest possible.

Yesterday the stranger from my doctor’s office called and said:

* I could pick up last Friday’s report;

* it was the last report my doctor would provide free of charge;

* my doctor had prepared a new requisition to replace the one she gave me on November 10, 2014 in which she instructed the sonography lab to fax a copy of all future reports to Dr. Braverman directly; and

* it is up to the labs whether they comply with this instruction. If they don’t I will have to call each time, pay a small fee for the reports and drive to pick up copies from my doctor’s office.

I don’t mind the small fee. I cannot erase from my memory and anxiety banks the comment that my doctor does not think these ultrasounds are medically necessary. I am still reeling from that and feeling very unsettled about the implications of this comment for my present and future care prospects here at home. I am left with a flurry of questions that – as evidenced by the time of this post – have woken and kept me up at night.

Has she put this in my chart? What else does she think is medically unnecessary? Did she even read the Braverman diagnostic and treatment reports? Does she even believe I have autoimmune conditions that have been responsible for much of our painful reproductive medical history? Will she be sharing her opinions with my ObGyn when she transfers my care to him if this pregnancy progresses?

Ugh.

Why can nothing – or seemingly little – on this journey for us be simple and free of unnecessary stress?

UPDATE: Today’s ultrasound went very well and offered some deeply appreciated reassurance. Baby was measuring ahead (8w4d) at 19.8 mm (I think – I was sneaking an unauthorized peek). That’s almost double from last Friday – the little one had a big growth spurt this past week! Her/his little heart was thumping along at 181 and 179 bpm. The little one also waved its itty bitty leg buds at me and showed off a big old cranium filled with a whole lot of invisible space at the moment.

My cervix is still long and closed (yay!) and I saw the very early stages of the placenta forming. The technician suspects it will be posterior (the Miracle Toddler had an anterior placenta) so that should be interesting if it comes to pass. I have no experience with this but I’ve read that one feels more and earlier movement and is less likely to suffer back labour with a posterior placenta. Sounds good to me!

7w1d: U minus 8.5 hours and counting

I have my second ultrasound in about 8.5 hours. My heart races when I think about it. I wish I could will myself not to think. About it or anything else related to fertility, babies, autoimmune or recurrent pregnancy loss.

Some part of me cannot imagine this scan being another catastrophe. How could we really be so cursed? But the reality is, even if Dr. Braverman’s immune protocol is still working, there is always the chromosomal component that could cause this baby to stop developing or developing normally. We could still have a missed miscarriage for reasons completely unrelated to my hopefully-suppressed and still-behaving immune system.

My best friend wrote me yesterday that she cannot imagine the energy it takes to face the worry every day after all that we have been through to get here. That strikes me as a poignant observation on a few fronts:

1. No wonder I’m exhausted. I’m making another human (I hope) and shouldering or at least trying to process and let go of *so much worry*.

2. My normal is not most expectant mothers’ normal. I am so immersed in my situation and the RPL experiences of several of you that I sometimes forget how rare my circumstances are. How many women have an immune system hell-bent on destroying new life? Thankfully not many in the grand scheme though I think it happens more than most doctors ever acknowledge or are prepared to consider.

3. Knowledge is a double-edged sword. I am so grateful to know why we have lost so many babies. I am also terrified knowing that aside from the chromosomal issue we cannot control there is always the possibility of my immune system developing an adaptive response and doing a 180 on us, especially during the first and early second trimester. This is of course why Dr. Braverman pushes monitoring and why I was so quick to drink that kool-aid. I have been working to accept that so far things look good and I am doing everything I can to make this work. This is as good as it gets. I pray and hope that it is enough.

4. Finally, maybe this will work. And maybe one day in this pregnancy I will wake up and be genuinely less afraid. Not entirely free from worry because motherhood is laced with worry from start to finish. But able to worry less and feel some shade of confident that we really will welcome another child into our lives and home.

For today, my wish is for peace. Peace of mind. A peaceful ultrasound this afternoon. A peaceful sleep tonight. A peaceful journey to December 25th (13 weeks) and beyond. A peaceful birth.

A girl can dream. This is mine.

6w6d: The Anxiety Ratchets Up

A very warm thank you to everyone who has been following our journey (whether you comment or not) and who has shared such kind words and wishes along the way and especially after our first ultrasound in this pregnancy late last week.

I am 6 weeks and 6 days into this pregnancy and my next ultrasound is at a local radiography lab where I live, not with Dr. Braverman. It is scheduled for Friday afternoon, November 14, 2014 and the LP will be in tow. I was doing pretty good with my old albatross, anxiety/fear, until the last 12 hours when I suddenly began contemplating how few pregnancy symptoms I have and how mild they are compared to past pregnancies (particularly the one successful one in 2011-12). I am trying to tell myself that all of the medication I am on and especially the steroid (prednisone) likely account for this pregnancy feeling very different than the past nine.

In other news, I had a mostly helpful appointment with my general practitioner on Monday. She is also my prenatal care doctor and – God and Universe willing – will be until much of the way through the second trimester (unless I choose otherwise, which at this point I have not done because it’s way easier to see my GP and the wait for my appointments with her is minimal whereas the wait to see my OB even with an appointment can be upwards of two hours and never less than a half hour). She agreed to requisition weekly ultrasounds although she warned me that our public health care provider may refuse to pay for all of them. I said we would cross that bridge if we have to. Paying out of pocket will likely still cost me less than flying back and forth to New York City and I would like to think I could advocate for myself not to have to pay at all given my medical history, diagnoses from Dr. Braverman, inability to get in to see an immunologist or a geneticist here at all or in any timely manner and my age (which is, shall we say, advanced in the baby-making world).

Dr. Braverman has told me that I will have immune blood tests repeated at 8-ish and 13-ish weeks. With flight, work and lab schedules that means two more trips to New York, one on November 24th (8w4d) and one on December 22nd (12w4d). I will not be 13 weeks until December 25 and have friends staying with us from out of town December 26 – January 1, making the scheduling of the 13-ish week lab work a little tricky. I have kept my Dec. 7-8 flights for now in case the ultrasounds here are of such abysmal quality that Dr. Braverman wants me back for at least one more before the end of the first trimester.

Dr. Braverman says that more recently his team has been testing after the natural drop in hCG levels that occurs by 12 weeks because hCG has a natural immuno suppressive operation and he likes to see if there are any levels flaring up with the hCG drop. If not, I’m assuming we can then stop or taper most of the immune meds (except the Lovenox) around week 14-15 as it takes two weeks to get the full report from these lab tests. I have not confirmed that assumption but plan to speak with him about it when I see him next on November 24th assuming Azulito keeps on chugging in the meantime.

In other news, I have found myself feeling Azulito’s presence but struggling to connect in any in-depth way. I caught a cold on last week’s travel to New York (of course) and I’ve been not feeling quite myself. I do not know if that is why but it’s adding to my anxiety about whether everything is still chugging along as it should be. If you’re in the habit of asking powers greater than ourselves for support or if you simply believe in hope, I’d be very grateful if you might send out a “yo, please let this work” request when you have a moment. The nerves they are a-jangling!

Until next time… thank you again. For everything.

Beta #2 at 8dp5dt (13 dpo)

I have been waiting with baited breath all day to get my report on this beta. I had to gamble and order refills of all of my meds except Neupogen (because I ordered lots of it the first time not realizing it was more than a 5-week supply) today without knowing if my betas have doubled otherwise I would have to delay my flight home on Friday.

My hands have been shaking much of the day and I have felt jittery and anxious. I have been waking up at night and unable to fall asleep, which is common for me when pregnant and on prednisone.

The email finally came this afternoon with beta #2. Progesterone results were still pending. Beta was 128. A doubling time of 45.9 hours from 62 on Monday. I immediately felt my heart leap into my throat and I have fought back the urge to vomit ever since.

My only measure of success in my various pregnancies to date (this being #10) is the one success story. My betas were really high and doubled very fast. So when this one did not measure up, I wanted to curl up and die or at least burst into tears and sob all over my desk at work.

I have not done that. I am going to go for a walk and try to calm down and pray that pregnancy #10 will be success story #2 somehow.

My next beta is Monday, October 27, 2014. In the meantime, I’m back in New York tomorrow and returning home Friday.

I’m sleep deprived and overwhelmed by fear. I hate this. I hate my anxiety and inability to tame it. I really, really do. I wish I could enter a coma for the next 8 weeks and awaken to news that the first trimester was over and everything looked great.

I will update Monday after the beta if I can’t find positive things to say before then.

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:

FullSizeRender

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:

FullSizeRender

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.

The Final Countdown – FET minus 4 hours and counting

Today at approximately 1:30 p.m. EST I will – hopefully, prayerfully – have our last two donor-egg embryos transferred into my well-primed uterus.  I am nervous, excited and a little scared.

My intentions are set and I have felt more grounded since doing so.  On the whole, I feel optimistic and hopeful lately.  Things feel as right as they can given my loss history and immune and HLA diagnoses.

Yesterday I had my last pre-transfer meeting and ultrasound with Dr. Braverman.  He was pleased, my lining was 10 mm and still perfectly trilaminar.  He gave me a picture of it to take with me (for good luck?).  He said I/we have done everything we can and my body appears to be responding beautifully so now it is all up to the embryos.

No pressure, Gert and Al.

Yesterday afternoon I also had pre-transfer acupuncture with a new practitioner to whom Dr. B’s nurse referred me last week. I really liked her and wish she were working today so I could do my post-transfer session with her but no luck.  I’ll head back to Yin.Ova for that later this afternoon.

In the meantime I plan to do some work this morning to keep myself busy and then go for a walk, hopefully through Central Park to the clinic where my transfer will be done. I think that would be a nice segue.  Hopefully my time management skills or lack thereof enable this plan to come to fruition.

To Gertrude and Alice:  I love you.  The LP loves you.  We want you to come home and stay there.  Please survive.  Please transfer smoothly.  Please implant deeply and thrive.

The Madness Continues and a Word of Thanks

The plan was hatched. The intentions were set. The flights and hotel accommodations were booked.  And then life came along and got in the way of my best laid plans.  Again.

The LP will not be joining me in New York for the transfer of (I hope and pray) our last two embryos, Gertrude and Alice, on Tuesday.  The transfer has been scheduled for the afternoon.  That was a small hiccup I did not anticipate and although Dr. Braverman told me that science says there would be no problem at all with me flying back home Tuesday night, his gut (and mine) say wait one more day.  I left home Thursday last week and today I accepted that I will  not be back – and I will not see the Miracle Toddler or the LP again – until Wednesday evening.  So it is.

The later-than-anticipated transfer time meant the LP would be travelling back solo (as would I) as he has a work commitment he cannot change further (he already changed it to be able to come to the transfer next Tuesday).  Oh well.

Then something much more serious happened.  The LP injured his back very severely.  Even on muscle relaxants and anti-inflammatory medications, he can barely move.  This has never happened before although he has been having muscle spasms in his back this year.  The suspected source to date has been stress and the strain of a desk job under high tension.  And possibly a lack of consistent exercise although the LP does curl and plays hockey nightly with the Miracle Toddler when not disabled (no hockey today or last night!).

The prospect of air travel and sitting in airport lounges for 8-9 hours on Monday and the same on Tuesday night with a severely injured back makes me wince.  The LP was determined to come notwithstanding this latest obstacle but today we both agreed that this was a bad long-term plan for his physical and mental health and not likely to make me feel very good about asking him to be at the transfer with me.

In other news, the Progesterone In Oil (PIO) is kicking my behind (literally, because you know that is how I roll).  Dr. Braverman’s nurse taught me a new trick about heating it immediately before drawing and administering it and so far this has meant no lumps or bumps because the oil is thinner and moves more easily as I inject it and after having done so.  I don’t so much mind the needles going in.  All of that I can manage and would not even blink or complain.  The pain I have for about 24 hours afterward at the injection site on the other hand… that is not pleasant.  I feel as though I walked into a sharp object and gave myself a mother of a bruise on each flank.  I will take the PIO over Prometrium any day of the week but I hope I find some better spots on those flanks soon or I will be a walking wincing wimp in short order.

On the eve of Canadian Thanksgiving, I am struck by how much I have for which to be thankful.

In the present moment, I have been truly moved by some phenomenal events so far on this week’s stint in NYC.  First, I met a friend and fellow RPL sufferer from Canada and her partner for whom I have developed a lasting affection.  Together we briefly met with another blogger who happened to be attending a conference in NYC this weekend.  That was intense.  I don’t think I could have attended that conference.  Yowza!

I have been awed by the kindness and generosity that some truly amazing women in New York have shown me these past few weeks.  I am humbled and choking up a little as I write to say how honoured I am to have met you.  These amazing women who I did not know a few short months ago have behaved as true, long-time friends do.  You have checked in on me, met me to do things and welcomed me into your homes.

Friends, you know who you are.  Please also know that you mean so much to me and I am so grateful for you helping me be and feel safe, comfortable, “normal” and less lonely in this totally abnormal, often lonely and anxiety-provoking process.  What you have done and are doing means so much to me.  Thank you.

And to everyone who has wished me well, followed along, worried beside me, shared this journey and hoped as I have hoped for you that things will one day work out as we long for them to do: thank you.  A toast to each and every one of you, my friends.  Please accept my heartfelt thanks.  We truly are an amazing group of female creatures.  Yay us.  Yay you.

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 Presentation by Jeffrey Braverman and Darren Ritsick

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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