Progress

Going through pregnancy I was always counting down the days until my next pregnancy related doctor’s appointment.  While I always got anxious that something would be wrong at the next appointment, this approach made time pass.  I think this is because it was a goal-oriented approach.  Instead of counting down to the ultimate goal (having a baby), I broke it into mini targets.  Sometimes I only had to make it a few days, but it was never more than 4 weeks at a time.  For some reason, making it to 4 weeks ten times was a lot more manageable than making it to forty weeks once.  Yes – they are both the same thing in the end, but time feels more manageable when broken down into smaller segments.

I didn’t make it to the ultimate goal in this case (that date will hit in about 12 days and I am intensely aware of it looming over me).  Now we find ourselves starting over.  We’re starting over with an unknown timeline.  We don’t know when we could be expecting to have another baby.  No one can promise a certain date at which we will be pregnant again.  We still miss Isaac and we are still coming to terms with our loss and our grief.  However, my husband and I agree that the thing that lets us keep going every day is that we are going to try again.  We have the diapers, the crib, and the cute little outfits along with every other trendy baby gadget.  We just don’t have our baby.  If we wait for our grief to end to start trying again, we will be waiting our entire lives.  Losing Isaac will hurt forever.

So, to pass the time faster, we are already starting the never-ending schedule of doctors’ appointments that will lead up to trying again.  We have a ton of information flowing in about our loss.  In terms of a future pregnancy (both getting pregnant and being pregnant), we have a ton of concerns to manage including Polycystic Ovarian Syndrome, blood clotting genes, an autoimmune disease, and now Preeclampsia/HELLP Syndrome.  Because we lost Isaac, we need a plan to manage all of this before we even begin trying to get pregnant.   This Thursday we are going to see our fertility specialist.  In a few weeks, when we have our final pathology report from Dartmouth, we’ll hopefully meet with a Maternal Fetal Medicine specialist.  Then we’ll find a high-risk OB to help come up with a treatment plan for a future pregnancy.  Once all of that happens, it will be almost time to try again.  I hope.

Truth be told, I am terrified.  I am scared that someone is going to tell me that we have to wait longer than we’re expecting (4 months or so).  I am scared we won’t get pregnant nearly as quickly as we did the first time (first round of treatment).  I am scared that we won’t get pregnant at all.  I am scared that something will go wrong again.  However, I know Isaac would have wanted a sibling – lots of siblings. We want him to have siblings.  Being scared or paralyzed by our grief isn’t going to make that a reality.

Failure

Needless to say, losing Isaac has left my husband and I feeling helpless.  I have been lucky thus far in life.  I have lost just one grandparent and one great uncle that I was especially close to.  Other than those two losses, I haven’t had to deal with the death of anyone particularly close to me.  Both of those men died from illnesses but lived full and happy lives prior to their deaths.  Neither of them was robbed of life’s many joys before leaving us.  I was heartbroken by both losses, but I didn’t feel them nearly so intensely as I do with Isaac.

There are a number of differences that I know make this feel so distinct.  I carried Isaac and he felt like an extension of myself.  He also never got to experience all of the highs and lows that come with life.  He never got to experience anything except my belly.  While I know that Isaac’s death isn’t directly my fault, it does feel like some sort of failure on my part.  I failed to bring Isaac into this world alive, and, as a result, I will never hold him again.  I tried my hardest to do everything right in my pregnancy with Isaac.  I exercised, I ate well and I followed my doctors’ instructions exactly.  We sill lost him.

Other than challenging my doctor when he told me abnormal symptoms were normal, there wasn’t anything else I could have done.  This is a difficult thing to accept for me.  I’m not used to problems that I can’t fix.  I haven’t really encountered issues like this before.  I would do anything in the world to bring Isaac back, but no amount of effort could do that.  Until now, if I put in the effort, I could accomplish just about anything I wanted to.  I’m not saying that I always have put in the effort, but I could always look back and identify certain things I should have done (and generally knew that I should have done) to achieve some desired outcome.  In many cases, I was still able to fix any undesirable outcome.  Grades could almost always be improved, writing could be edited, and I could work harder to accomplish almost anything I wanted.

I have a lot of resentment towards my doctor at the moment.  I keep finding myself wanting to ask why he chose to brush off my concerns and to ignore my elevated blood pressure.  It’s as if knowing why he didn’t think my symptoms were important will somehow make our loss make more sense.  However, it does not ultimately matter.  I could rehash every step of my medical care and interrogate my doctor at length.  It will not change the fact that Isaac is gone.  I do realize how obvious this sounds.  I can’t bring Isaac back.  I can’t go back in time to the moment I so often relive, the moment where I wish I had insisted the doctor recheck my blood pressure.  I cannot fix this problem, this failure.  It’s a pretty terrible feeling.

At some point, I am going to have to figure out how to let go of the “what ifs”, the “could haves”, the “should haves”, and the “would haves”.  I will have to accept that Isaac cannot be brought back.  I will have to let go of the anger I feel towards the doctor.  I’m just not sure when I will be up to that task.

Doctors Are Supposed To Know Everything

I still haven’t shared the full story of losing Isaac and his subsequent birth, but I wanted to talk about the missed signs that something had gone wrong in my pregnancy.  Of course, I have no way of knowing whether Isaac could have been saved – he did, after all, have a knot in his cord.  I also do know that it is normal to want to blame someone when you lose a baby or anyone for that matter.  However, in our case, there were concrete signs that all was not well with my pregnancy.  Perhaps the other doctors I have spoken to are just humoring the grieving mother, but it does not seem I am entirely alone in thinking that my doctor failed us in this case.

I should start at the beginning.  I was a high-risk pregnancy from the start.  I am the lucky owner of two defective blood clotting genes that can be triggered by the massively increased estrogen associated with pregnancy.  To prevent a dangerous clot from harming either me or Isaac, I began daily injections of blood thinners as soon as I was confirmed pregnant.  I was also sent to a perinatologist after my first OB appointment.  This is the first point that something was off.  I didn’t realize it until I was in the hospital after losing Isaac, but I should have been seeing the perinatologist regularly throughout my pregnancy.  I saw one of the doctors at my first visit for a discussion, and he simply made recommendations to my OB (of which I constantly had to remind him). Another one of the perinatologists came in to tell us everything was normal at our 28-week growth scan and told us he thought the other doctor was being overly cautious with my care.  He and my OB had told us that it was fine to wait until 33 weeks (rather than 32) for the first weekly non-stress test.  That’s a test that could have shown Isaac was distressed, that could have shown us something was wrong.  I learned at the hospital that I should have been regularly overseen by a high-risk specialist.

At 29.5 weeks, I saw my OB.  My OB isn’t just a random doctor I found online.  He is the doctor that delivered me and my younger sister.  He is a very capable doctor.  I had seen a different doctor at the practice 3 weeks prior to this appointment and had found myself questioning my choice of doctor briefly when I realized the other doctor seemed to pay a bit more attention to my situation.  At this visit, however, it felt like something was off.  The first warning was that after gaining weight at a healthy rate throughout my pregnancy, I had gained 9 pounds in 3 weeks.  I hadn’t changed anything.  I was just quite swollen.  My cheeks had taken on a chipmunk appearance, and my boney ankles had been replaced with cankles.  When the nurse came in, she took my blood pressure.  She even asked me if I had a history of elevated blood pressure.  I had not.  In fact, I’d never had elevated blood pressure.  The nurse suggested that I was nervous and that must have triggered it.  I did tell her that I was not at all nervous, but she didn’t suggest that they try to take my blood pressure again.

The doctor came in and told me that I had passed my gestational diabetes test and that I was the least anemic patient in the practice (at least I had that going for me?).  He listened to Isaac’s heartbeat (I wish I had known that was the last time I would hear it).  Everything was fine.  He asked how often he was seeing me at the moment, and, upon noticing the previous doctor had picked 3 weeks, he suggested I return in 3 weeks.  I explained that I was planning to be out of town and that he had previously and repeatedly given us the all clear for that week.  I suggested I would be home in 2 weeks (for a high-risk pregnancy, in particular, that would have been normal) and in 4 weeks, unless that was a problem.  He said, “See you in 4 weeks!”  As he sat me up, I told him I had some questions.  I asked him if I should be concerned about my “elevated blood pressure” (I didn’t know what it was until I was in the hospital).  I also told him that I had been seeing spots and noticed significant increases in my swelling.  I asked if that was normal.  “Totally normal,” he said as he patted me on the back and ushered me out the door.  I went on to ignore these symptoms for too long, having been told by a medical professional that they were normal.

I learned later that my blood pressure was such that they should have retested me in 4 hours to see if it remained elevated.  If it had remained where it was, even in the absence of protein in my urine, I would have met the criteria for diagnosis preeclampsia.  I also learned that my out of character weight gain should have been a red flag.  It was so clear that I was retaining too much fluid.  Further, the swelling and seeing spots were two standard symptoms on the checklist for preeclampsia diagnosis.

To the perinatologist, who suggested that his colleague was overly cautious with my care: you were wrong.  To the OB, who told me my symptoms were normal: you were wrong.  The problem seems to be that these doctors see TONS of patients around here.  I became just another statistic to them.  It’s not just their fault, I should have stood up for myself.  My doctors were making me feel like a crazy pregnant woman for asking questions when really I was just a concerned mother-to-be.

There is a clear lesson to be learned here.  If you have doubts about your doctor, change doctors.  Insist that your questions be answered.  We, as human beings, are not just statistics.  If you don’t stand up for yourself, you could end up like me, full of “what ifs” and other regrets.

 

 

Day 14

July 31, 2016

Dearest Isaac,

Today we went home.  Every second of it felt wrong.  I know you are with me and Daddy always, but it still felt like saying goodbye.  Bringing you home in a tiny box, containing an even tinier red velvet bag, felt so wrong.  Traffic was brutal, I cried until I was sick, and both Mowgli and Cali ended up sick.  Daddy held you in his lap the whole ride home.  It’s not a  ride in a car seat back from the hospital, but it is the best we will ever have.

This house feels like a prison of memories.  Seeing the nursery returned to a guestroom brought me to my knees.  Thank goodness your Daddy was there to catch me.  I found the package of positive pregnancy tests I had saved.  The so comforted me once, proving that you really existed.  I couldn’t believe we could be so lucky and so I proved it to myself every single morning.  I’ll never part with them – my concrete proof that this wasn’t just a terrible dream.

Daddy keeps trying to comfort me, saying there will be another baby.  While I so want a baby, there will never be another Isaac Immel.

Unfortunately, I’ve become a bit obsessed over what happened to you.  I know my body failed you, but I can’t help wondering if there was something else we missed.  Maybe your toes, while perfect to me, might not have been normal?  For all I know you were genetically perfect – I mean you were perfect and we love every millimeter of you.  I just want to know why I am not laying here cuddling you.  What did we miss?  Could we have prevented it?

The doctor in New Hampshire said we would have results in a few months.  I need answers now.  The wondering is eating me alive.

Mommy’s are supposed to be strong and I promise I am trying.  I will be better for you.  I just need more time.

Your Grandpa almost finished your signed for me today.  He sanded it down and hammered on a gorgeous copper border.  It still needs varnish, but it came out better than I imagined.  I am certainly going to make one for home.  We also got a letter from Grandpa’s friends.  They’re going to get us a pin oak for home too.  I can’t wait.  We want to have a physical place to feel close to you.  We will put a bench under it and it will be lovely.  This isn’t how it was supposed to be, but we will try to make the best of it.

Love you,

Mommy