Penetrating the Armor

I haven’t had much to say as of late although I still follow all my favorite blogs as well as a whole new batch focused on kids with Congenital Heart Defects.   N0w, though, I find myself starting to bubble over so I thought I’d head back to the tried and true outlet of writing about it.

We’re 7.5 weeks away from Wal.nug’s scheduled arrival (and yes, at this point, that half makes a difference).  Physically I really can’t complain.  I have the typical discomforts with respect to sleeping, heartburn, back pain, etc., but nothing that’s unmanageable.  I started weekly non-stress tests at 29 weeks, so I get a weekly reassurance that Wal.nug’s doing just fine in there, which is nice with everything else being so uncertain.  It’s that uncertainty about what comes after the little one is born that is starting to take its toll.

LG has struggled and worried essentially since we got the diagnosis*.  He worries that our baby won’t make it through surgery or that the condition will end up being more complicated than what we’ve been told or that the child will have on-going health issues that will lead to a compromise in the quality of life.  He’s always wanted a boy, but now he’s saying he wants a girl because he thinks it would be too hard for a boy to be restricted from playing contact sports like football or hockey.  (That’s both heart-breaking to me in that it’s clear he’s really worried about the quality of our child’s life but also somehow funny since between the two of us and our epically non-athletic natures, this kid’s lucky to be able to walk without bumping into walls on regular basis much less play something like hockey or football.)

I’ve been the one with the stiff upper lip until the last week or so.

Through a wonderful organization we found on-line, I was matched with a mom whose daughter was diagnosed with the same conditions our child has at her 20-week ultrasound (just like us).  I’ve exchanged a few e-mails with this mother and she’s been incredibly generous with her time and story for which I’m hugely grateful.  Her story did trigger a great deal of emotion for me, however.  The most important thing is that her daughter who is now 3 is doing really well, which is fabulous, but her diagnosis ended up being more complicated than originally believed and she has had a really tough go of it and faces further invasive procedures to ensure her heart continues to function.  In many ways, reading her story was like a direct arrow to the protective shield I’ve built around myself.  Since the day we got the diagnosis, I’ve hung on to the fact that it was serious but very fixable – usually with a single operation and then the child goes on to live a normal life.  As I learn more and more, I’m finding that’s not always the case and that kids do have on-going issues and even require multiple surgical interventions.  (Now, that may be a bit of sampling error as we say in my business because it could be those who blog about and therefore whose stories are more available are those who have had a more involved course, but still – it’s getting harder to hold onto the “one surgery and done” mantra that’s been my talisman.)

Now that my shield has been penetrated, I find my worries really top of mind and constant tears just under the surface**.  It’s becoming harder for me to be the “strong one” yet expressing any of my fear, worries, or doubts makes things even tougher for LG.  We’re just ready for the next 7 weeks or so to go by so we can move on to at least having a better idea of what we’re dealing with and get out of the holding pattern we feel like we’ve been in for nearly a year – first when we were in the throes of infertility and now through a difficult pregnancy.  In the days to come, I’ll write about how I made a fool of myself at the newborn care class we took through our hospital and the family drama that’s ratcheting up around Wal.nug’s imminent debut.

* I think it’s finally safe to be more specific about the diagnosis.  Wal.nug has a condition called Transposition of the Great Arteries or TGA (also called Transposition of the Great Vessels) along with 2 significant Ventricular Septal Defects (VSD’s).  Essentially TGA means that the positions of the pulmonary artery and the aorta are switched meaning that rather than oxygen rich blood circulating from the lungs to the heart to the body, the oxygen rich blood in a closed circuit between the lungs and heart and the body never receives the oxygenated blood.  This condition is usually fatal within the first year unless treated typically via open heart surgery.  With Walnug, the surgeons will attempt to fix the VSD’s during the surgery as well which will likely take place when he or she is 5 to 6 days old.

** Could also be a function of raging pregnancy hormones…

Just the Facts

So much has happened since the last post in terms of emotions but not terribly much in terms of actual new events that it’s hard to know what to write about/where to start.  So, I think I’ll catch-up with the events today and try to write about the emotions (the harder part) over the next few days.

The only major baby events were the 2nd opinion and our visit with the pediatric cardiac surgeon who will be doing Wal.nug’s surgery.  (His or her in utero name has evolved from Nugget to Wal.nug.  My sister-in-law started calling him (or her) Walter because she thought that was a strong name that suggested a good long life.  Combine that with Nugget and voila…)

2nd Opinion

After much debate, we decided to get one…not so much to confirm the TGA diagnosis but to make certain that there is really no sign of a rhabdomyoma.   We started with the 2nd major children’s hospital in the city.  They turned out to be quite uncooperative and wouldn’t even speak to us unless we provided an order from our doctor and full medical records.  We had hoped to get the opinion somewhat “stealth” – mostly because of my weird issues around not offending doctors.  (I know that I’m going to have to get over this now that I have a little guy I need to protect.) However, after the first reaction, LG phoned our OB’s office, and while he said they seemed a little surprised, they did provide us with another local pediatric cardiologist based in the suburbs.  She agreed to see us.  Even better, she comes into the city once a week and practices at the same office where we did our initial Level 2, so she was able to see the original films and compare her reading against that.   In great news, she agreed that no rhabdomyoma was present, so we can finally stop worrying about tuberous sclerosis.  She confirmed the diagnosis of TGA.  Also consistent with our first consult, she told us the heart was too little to make a definitive diagnosis on anything else at this point.  We do another fetal echo this coming Monday and another at 33 weeks so hopefully that will tell us more, but all the doctors have said they won’t know with true certainty until the baby is born and they can see the actual blood flow/oxygenation patterns.   That leaves a lot of time for worrying.

Meeting with Surgeon

This turned out to be a tougher meeting than I expected.  (I think LG had more realistic expectations of the relative toughness.)  Even going into  Children’s Hospital – a building both of us have walked by a million times but never imagined ourselves actually in there because of a sick child — our sick child – was an eerie feeling.  The surgeon seemed very capable and talked about the hospital’s experience and success rate with the arterial switch procedure.  LG felt like he was getting a bit of a sales job, but I took a measure of comfort from the facts and statistics.   What surprised both of us was that when we asked how many of these had been done, he said about 230…over 30 years.  That was a stark reminder that this is anything but routine surgery.  Both the surgeon we met with and the head of the department will be in the actual procedure.  Between them, they’ve performed nearly 150 of these surgeries, so I feel like we’re in good hands.  The doctor was direct with us in that this a surgery that they know how to do and have very high success rates, but that it is technical and complex especially given the size of the baby’s coronary arteries (which will all need to be reattached).  In a full-term baby, he said they are approximately the diameter of the opening of a ballpoint pen (read: very very tiny).

They also took us on a tour of the NICU and the PICU.  I’m delivering at a different hospital (more on this in the emotion post), so the baby will be immediately transported across town to Children’s where he or she will go to the NICU to be stabilized.  The baby will stay there until surgery – probably on Day 5 or Day 6.  After surgery, the baby goes to the PICU as that is where they care for all post-op cardiac kids.  Once Wal.nug is cleared from a surgical sense he or she will either be discharged or go back to the NICU if there are feeding issues (which are common in these kids apparently).

I’ve read so many gut wrenching accounts of kids who started their lives in NICUs so I felt prepared in concept but not in actuality.  Walking into the place knowing that your child was going to be relying on this place to live was a terrifying feeling.  Knowing that our child is going to be alongside other children fighting for their lives…  I wanted to escape the minute we walked through the doors.  Somewhere between now and when Wal.nug is relying on his or her father and me to provide strength and protection, I’m going to need to find more internal fortitude.

Where we are now…

Pregnancy-wise everything is going along normally – which is just about the most blessed word I can imagine given how everything started.  I passed my 1 hour gestational diabetes test, which was the first test through this entire pregnancy that didn’t plunge us into a place of worry and distress.  Blood pressure is good, weight gain is good if I’m training to be a sumo wrestler (somewhat less than good according to my doctor’s guideline, but eh…), baby’s heart rate is nice and strong, and I’m finally starting to feel Wal.nug kick pretty regularly.

So, those are the facts…the emotions behind everything are a little less straightforward as we bounce between excitement and anticipation to the normal fear felt by all new parents to the abject fear that our child may not make it through the surgery or may not have the smooth recovery we’re all counting on.

Through it all, though, I’m grateful to be in this position.  Blessed to be in a place to worry about our child.  The all encompassing pain of infertility is still very close to my heart.


Phone Calls

I’m struck by how much and how quickly an IVF cycle can turn on a single phone call.

The call after the baseline telling you you’re canceled because of a persistant cyst or that you’re cleared to start your stims.

The phone call after each wanding/blood-letting telling you to continue on or that the cycle is canceled due to low response or some other heartbreaker.

The phone call telling you what time to take the trigger shot and the feeling that you’ve passed a major hurdle.

The phone call telling you your fertilization rate –  a call that can either plunge you into despair or keep your hope alive for another day.

The phone call with your transfer time – will it be a Day 3 or a Day 5?

The ultimate phone call – the one for me that has always started with the word “unfortunately…” blunting my ability to hear anything beyond that.

Yesterday, I was on the phone with my sister when the other line rang through.  I quickly checked the caller ID and saw that it was my clinic – and being unable to operate call waiting promptly hung up on her.  (She was very understanding when I phoned her back.)  LG was in the other room but could tell from the catch in my voice when I answered who it was and rushed out to be next to me.  For me, every one of those call has a moment  – one might even call it a pregnant pause – between the barely controlled “hello” and whatever follows next.  In that moment are hopes and dreams ready to be carried along another day or dashed. 

This time the news was good.  No, it was great.  As of today, we have 8 embryos.  Double what we have had at this time for either of the other cycles.  We are scheduled for a Day 5 transfer on Wednesday.  There are still many phone calls to go…but for today, our hope has survived the ringing of the phone.

Expectations

Thought I’d start with a couple of random updates before I get to what’s really been on my mind as of late:

  • LG and I went to the acupuncture info meeting on Monday.  I found it very interesting, and I’m looking forward to adding it to the protocol for this cycle.   I do wish I’d started earlier as the instructor said they usually recommend two to three months before a cycle, but she said there can still be a benefit, so I’m more than willing to try.  I have my intake appointment tomorrow, so more to come.
  • 7 Days to my leave!  I’m really looking forward to getting some space from work – especially being front and center for the layoffs, salary freezes, restructurings, etc.  During the leave I plan to:
    • Take part in integrative therapies including acupuncture, yoga, and fertility-enhancing massage
    • Cook
    • Organize my recipe file
    • Visit the local zoo on a nearly daily basis to watch the white cheeked gibbons – my favorite animal
    • Try my hand at watercolors
    • Update my blog more frequently
    • Explore my Budding Life Plan…more on this below
    • Relax and grow great follicles which will hopefully turn into solid embryos which will hopefully turn into a healthy, happy baby.

Now – Part II of this post.

I’ve written before about how important my sister is in my life.  We became very close after she graduated from college (she’s 3.5 years younger than I am) and since then, she has been my rock.  The person who knows exactly what I need to hear in the moment, whether it’s a sympathetic ear, words of comfort or encouragement, or even a buck-up speech.   She knows the ins and outs of what we’re going through with the infertility and has gone above and beyond in being a great listener and really seems to understand the struggle.  As much as someone with 2 kids, one of whom she and her husband refer to as their “one-shot wonder,” can that is.

Lately, however, it feels like we’ve been really out of sync.  It started with some off-hand comments she’s made about my nephew, whom I’ll call Truck in honor of his one true love.   Truck is just shy of 3, a total charmer, and an inveterate trouble-maker who has been giving his mom fits as of late.  A few times we’ll be on the phone and he’ll be acting up in the background, and she’ll say something like “I’m going to send him up to you and LG for a week…see how badly you want kids after that!”  I’ve been trying to figure out why that gets to me as much as it does without really coming up with an answer.   I really believe she’s not making light of our situation – I think she’s reacting more to her own frustrations in the moment, but it still rankles.

To describe the next part of the out-of-sync puzzle, I have to take a step back.  As my small but beloved circle of readers know, I’ve been really struggling with my current career of HR.  The question I have been unable to answer up to this point is if not HR, then what.  To that question, I’ve been coming up bone dry, which has led to a premature mid-life crisis of sorts.

A number of possible career paths have flitted through my mind – some dwelling a little longer than others – but none have felt reason for one reason or another.  I’ve thought about going back to school to be a doctor but have disqualified that because not sure how I would do that at my age especially if we are blessed enough to have the children we so want.  Medical school at 38 followed by a residency – all with small children in the house – seems more than I want to take on.  Then, I’ve thought about nursing, but the type of nursing I think I want to do involves a significant amount of schooling and practical experience, so it would be a good 8 years or so before I was really working in the capacity I want to…and again, with IF treatments, (hopefully) small kids, etc it seems like more than I want to take on.

I’ve also considered psychology as I’m often told that I’m a good listener,  but if one thing HR has taught me is that I have very little patience with people who want to wallow in a situation of their own making and then not take steps to get themselves out of it.  I am by no means saying that this applies to the vast majority of  people who seek psychological counseling. When I say this, I’m thinking more of my own personal experience when I was in several years of therapy for an eating disorder and spent the better chunk of that time resisting every minute of it.  (Thankfully, thanks to the patience and skill of the wonderful LSW I was working with, I finally was able to breakthrough…so I know first hand the value but also how frustrating the process can be for all involved.)  On the whole, I think that seeking professional counseling is a very courageous act that people make when they know they need to make changes in their life.  It’s just that sometimes those changes are a long time in coming, and I don’t know if I have the patience to see people along on that journey and as a result, I think I’d either burn out quickly or be ineffective.  Then there are the offshoots of HR that I’ve considered – Learning & Development, freelancer creating e-learning curriculums, etc, but all of those seem like same thing, different wrapping.

Then, last week I stumbled onto an idea that is too hare brained, too fantasy laden at this stage to write about specifically, so I’ll just refer to it for now as my Budding Life Plan.  If it starts to take shape, I’ll definitely write more about it, but suffice it to say that for the first time in a long time, I’m really excited about an idea.  I’ve talked about it with LG, who is usually very practical and slow to accept things that (a) distract us from our primary priority of family building and (b) require significant change, but he gets how this idea addresses all the things I’ve said I want out of a career and is supportive.  I’ve talked with my mother (also a paragon of practicality – which this idea is not) and she thinks its a fabulous idea.  Then, I told my sister – my cheerleader, the person I go to to help me dream and dream bigger and…she laughed at me.  Completely mocked the very concept of the Budding Life Plan and then mocked me for what she termed yet another  “idea of the week.”

Maybe I caught her at a bad time.  (Truck was yelling in the back seat of a the car.)   Maybe in my excitement I didn’t articulate the idea and it sounded even more hare-brained than it is.  Maybe she’s growing weary of what I admit is increasingly a 2 track conversation with me…want a kid, hate my job.  It’s just that my expectations of her are so high because of what she’s always been to me – my soft place to land – that to find that soft place replaced by a mocking hard surface was jarring and hurt… a lot.

I know I need to talk with her about it and probably ease up on my expectations of her, because forcing her to teeter on a pedestal isn’t fair to her.   I have a sense it’s going to take us some time to get back in sync.

MTHFR…WTF?

AF has still not arrived.  Cycle Day 42 and counting.  Good thing we already had a consult scheduled with Dr. Yacht for Tuesday just to make sure we had a solid understanding of our protocol for the next go-around.  He said that a delayed natural cycle after a failed IVF is not normal per se but also not uncommon.  After a quick wanding and blood test, it’s been determined that my lining is still pretty thick (10mm) and my estrogen is high, so I’ve won myself a Provera prescription to bring on my period.  After that, I’ll go on BCP to make sure I’ m adequately suppressed for the June cycle.  Stims should start in late May.  The break was much needed.  I’m feeling much more emotionally ready this time than last time when we went from IVF #1 to IVF #2 with little more than a month in between.

We also got the results of my genetic testing back.  I sent an e-mail to the nurse on Monday asking if they were back so we could be sure to address them in our appointment on Tuesday.  She e-mailed back and said everything was normal except I came back positive for MTHFR, so we’d be adding Lovenox after the transfer due to a slightly elevated risk of blood clotting.  This, of course, sent me straight to the library of the University of Google School of Medicine where I freaked myself out in short order.  By the time I went to Dr. Yacht I had a whole host of questions that caused him to give me his patented slightly patronizing but at the same time weirdly comforting smirk.   Turns out, I have the relatively common and much less concerning heterozygous variety and when he tested the homocysteine levels, those were all normal, so he feels there is nothing to worry about.  The Lovenox is just a precautionary measure as quite frankly he can’t figure out why 6 high quality embryos have failed to implant and figures we’ll just cover our bases.

Sorry this is such a boring post.  Just wanted to get something up as I haven’t felt very “post-worthy” lately.  I’m cooking up a few posts in the coming days about my experience going back home for Easter this past weekend as well as other bloggy thoughts.  Thanks for bearing with me!

Amber (or should it be Red) Alert

AF is missing.  I’m now at CD36, which is crazy as prior to all this IF stuff the one thing you could say about me is that I was regular as hell.  (A fact which apparently didn’t get me anywhere, since whatever I was “regularly” kicking out was crap quality.  Ah well…I digress).

My first period after the Cycle of Doom (aka IVF #2) came right away after stopping the progesterone.   I think I was a few days late after failed cycle #1, but I don’t remember being this late.  I’ll have to go back and check, but I wasn’t quite the obsessive recorder of all things down-there as I am now.  (Why should I have been, IVF is the magic bullet and we were only going to need it once…right?  Right.)

I’ve decided to use this blog to move AF along as we all know that lamenting a missing period to all and sundry is the best way to force AF’s hand – if only so she can make a fool of me yet again.   LG has tentatively brought up the pregnancy possibility.  This directly after I announced to him that I think I’m having a mid-life crisis at the ripe (young for a mid-life crisis / ancient for conceiving a living human child) age of nearly 37.   (More about that later).  He attributes any pronouncement I make that seems less than hopped up on happy pills to be caused by (said in a hushed voice) “hormones.”   Technically, I guess his pregancy theory has theoretical merit, so I will spend $10 I’ll never get back to be taunted by a plastic stick, but I’m not holding out hope as I have absolutely no symptoms.  Not a sore boob in sight, nary a queasy stomach, nada.

In all seriousness, I’m hoping it’s soon, so that my May AF doesn’t get pushed back too far thereby jeopardizing IVF #3 in June.  I want to make sure I have plenty of time on BCP to get adequately suppressed.  The first go-around, I was only on the pill for a couple of weeks, which wasn’t enough to shut down the estrogen factory so the cycle was canceled.   IVF #1 – I was on them for almost a full month, so while it was a giant bust, we were able to proceed to ER/ET.  IVF #2 brought us “Callie – Made Crazy by Lupron,” and we will NOT be going down that road again.  All BCP for me from here on out.   So:

Dear Aunt Flo:

I know I haven’t always greeted with you with open arms, and I know I probably shouldn’t have cursed at you like I did the last time, but…please come visit.  I promise I’ll be nice this time.

Love,

Callie

Mel’s Show & Tell

We’re back!  A week of sun, surf, togetherness, and yes, many a fruity drink was exactly what we needed.  It was incredibly restorative in so many ways.  We spoke very little about infertility and treatments, but even when we did, it was in a much more hopeful way.

When we were selecting our vacation spot, we were open to resorts that allowed kids, but at the last minute LG suggested we look for an adults only resort.  (Not one of those kinds – but just something where we wouldn’t be reminded at every turn what was missing.)  It turned out to be a great decision as it really allowed us some time away from the disappointments and even jealousies that have been front and center for so long.

The Dominican Republic (we were about an hour away from Punta Cana) is absolutely beautiful.  We didn’t know what to expect as it’s not one of those places that comes up as much when talking about a beach vacation, but I would highly recommend it.  Miles and miles of beach made for incredible morning walks that were just a great time for LG and I to be together.  The resort where we stayed was also amazing – incredible service, good food, and enough activities to keep it interesting, but you could also do your own thing.  If anyone wants to know where we stayed, feel free to send me an e-mail, and I’m happy to provide more info.  Here’s the view from our room.  I can’t tell you how much I miss looking out the window and seeing this:  view-from-8204-1

We spent most of our time during the day either readsleeping-on-beach-1ing books, swimming and snorkeling, drinking beer (LG) and some fantastical concoction of white rum, pineapple juice, grenadine, and bananas (me) plus a healthy dose of beach naps.  LG delights in capturing me in what he calls my favorite state (he’s right), so here’s me sleeping to the sounds of the surf.  (I’m usually cold no matter where I am, hence the jacket and towel/blanket).

Finally, one of my favorite pictures just because it reminds of me of exactly what this trip was about…an opportunity for LG and me to get away and come together.  We’ll get back to injections, doctor’s appointments, wandings, and follicle/fert reports all too soon, but this picture just gives me a chance to reflect on the two of us and how lucky I am to be part of that.

reflections-sand

Now, it’s time to see what the rest of the class is showing.  Stop over at Mel’s Show & Tell to take a look!