HELLP Syndrome

An Ode to The Nurses of Speare Memorial Hospital – Part 1

/ Isaac's Mom / 7 Comments

From the moment I found out that I was pregnant, I had a lot of ideas about what Isaac’s birth would be like.  I was scared about all of the different birth scenarios that ran through my head, but none of those scenarios involved giving birth to Isaac, stillborn,  in a 25-bed hospital in Plymouth, New Hampshire at 32 weeks gestation.  We had chosen Chester County Hospital in West Chester, Pennsylvania.  For the sake of comparison, Chester County has 245 beds, a level 3 NICU (the highest level of care available for sick babies) and a brand new maternity ward.  I’m not saying there is anything wrong with a small hospital, but I am saying that Speare was the exact opposite of what we had planned.

From the moment they wheeled me into Speare, I spent my entire stay in one room.  I actually didn’t get out of my bed a single time from the moment I first laid down on Thursday until Sunday morning.  I didn’t realize that I had not moved rooms at all until my husband and family told me.

The most surprising thing about this tiny hospital in New England was the nursing care I received.  It may sound cliché to say that nurses don’t get enough credit, but this experience showed me that it is undeniably true.  They could not possibly be getting enough credit.  The nurses at Speare were incredible.  I can’t imagine I would have received quite such personalized care had I been at a bigger hospital.  I had several nurses, but each one of them provided exactly what I needed at some crucial point in time.  They were so amazing that I’ve decided I need to share some of these stories and thank them.  I’ll start at the beginning.  For the sake of anyone reading this, I am going to split this into two parts.  Yes – these women were that amazing.

Kathy
When I arrived at the hospital I was in denial.  I think that deep down I knew Isaac was gone hours before being told as much.  I simply couldn’t wrap my head around it for another few hours (maybe I still can’t wrap my head around it).  I had called Speare’s Labor & Delivery Department on my way in and spoke to a nurse, Kathy.  She was expecting me when I arrived, quickly got me changed and set to work looking for Isaac’s heartbeat.  She kept me calm, repeatedly reminding me not to panic.  She could find no heartbeat and the first doctor came in for his own attempt.  Fast forward a bit, the doctor has just said, “I don’t see any cardiac activity.”  My husband and I are crying and confused, and, eventually, I have to send my husband to call my parents to have them come to the hospital.  I remember laying there in shock and repeating over and over, “I knew it.”  Kathy swooped in quickly with her unfogettable barbie pink glasses and comforted me.  She reminded me that despite any fears I had previously, I couldn’t possibly have known something like this would happen.  She told me how sorry she was and held on to me as I cried.  I know there was much more to our story that I can’t remember.  Shock will do that to you.  The last time I saw Kathy was at the end of her shift.  She told me I was about to get a new doctor.  She knew I wasn’t particularly comfortable with our first doctor and the last thing I remember was her telling me I was getting a new doctor and she thought I might like him more.  It provided a glimmer of hope to my otherwise bleak outlook.  I didn’t realize I wasn’t going to see her again.  I never got to thank her for her kindness at the most heartbreaking moment of my life.  Kathy, you are a gem.  Thank you so much.

Janice
Things happened quickly after we found out Isaac was gone.  I didn’t realize what was wrong with me (Preeclampsia and HELLP Syndrome), but I was immediately put on an IV bolus of Magnesium that had me really uncomfortable and sick.  That was followed by something to reduce my anxiety and some pain medication.  I was totally out of it and drifted in and out of consciousness for the 12 hours or so of Janice’s shift.  I remember Janice, but the bulk of what I know about her comes from my family.  I know she let my parents and three younger sisters stay in the room with my husband even though it was certainly more people than I was supposed to have there.  She knew I needed them.

Days later, I learned that I cracked jokes throughout the hospital stay.  At some point, someone in the room said some now unknown thing.  It doesn’t matter what it was, but it must have been about food.  As I prepared to blurt out one of my go to lines of the summer in response, Janice beat me to it and said, “The snozzberries taste like snozzberries.”  It was exactly what I had been about to say.  She even nailed the voice. I still can’t believe that of all the funny lines to drop, she dropped my favorite one.  It’s like she was in my head.  I also have a vague recollection of her telling me not to fight her as she repeatedly tried to check my reflexes.  I know Janice sat at the little table at the end of my bed and kept an eye on my vitals as the hours slowly passed.  Janice is another nurse I don’t remember leaving at the end of her shift.  So – thank you, Janice.  Thank you for putting up with my large and loud family, and for knowing that I needed them there.  Thank you for keeping a sense of humor on the longest day of my life.  Finally, I swear I wasn’t trying to fight you as you checked my reflexes.

Meghan
Gosh – where to begin.  Meghan and her pink scrubs had me for my most intense moments in the hospital.  She was there with me my second night in the hospital when I suspect I was the most difficult, but she never lost her cool.  She had me for five terrifying hours of epidural free labor.*  She had me as I refused to breathe through contractions and as my BP skyrocketed into the 200s.  I can’t imagine I was particularly charming after finding out my son had died before I ever met him and 24 hours of labor.  I vaguely remember cervix checks and being intensely frustrated when I found out I hadn’t progressed much at all.  Then things escalated . . . quickly.  I went from 3cm to 10cm dilated in less than an hour.  I guess I didn’t realize that the doctor wasn’t at the hospital anymore, but he was not.  Things had been moving very slowly and it was really late.  Despite the doctor’s absence, at some point, it became clear that Isaac was on his way whether we were ready or not.  I said that I felt like I needed to push and I know Meghan told me not to.  I couldn’t have stopped myself even if I had wanted to.  Meghan delivered Isaac at 12:06 AM.  The doctor arrived at some point soon after.  I know she cleaned Isaac off and let me hold him, despite my ongoing inability to remain conscious.  I know she took pictures of my husband, Isaac and I.  They aren’t the pictures of his birth I had imagined, but considering the circumstances, I love them.

The next thing I knew, I was waking up at dawn.  I was comfortable and didn’t realize what had happened at first.  Meghan came in at some point and gently explained that she had our son in the nursery.  She brought him to me as my husband lay sleeping and I had the only moments alone with my son that I will ever have.  When it became too much for me, she woke my husband.  We spent some time alone and at some point she gently took him away.  I never saw her again after that and was initially disappointed.  I found out a few days later that Meghan had been exhausted (rightfully so) and, at the end of her shift, had gone home and passed out.  Then she woke up and called in tears.  She was so upset that she hadn’t said goodbye to us.  I’ll never forget Meghan or how grateful I am for her.  She delivered our son under scary and unusual circumstances without ever skipping a beat, and that’s remarkable.  I needed to be kept calm, and that’s exactly what she did. Thank you, Meghan.  You handled an incredible difficult situation with such patience, compassion, and composure.  I can’t imagine a way that it could have been done any better.

*I didn’t want to change my own recollection of things, but my husband has pointed out that Meghan was also my nurse during my first night at the hospital.  My father has also told me that he remembers Meghan having quiet and peaceful conversations with me to manage my anxiety and confusion.  I clearly do not remember either of those things, but am grateful all the same.

There is more to come on the amazing nurses at Speare, but I do want to recognize that I can’t cover every single nurse that helped me during my hospital stay.  I know a lot of patient nurses and technicians made their way in and out of our room.  Heck – there was even a lovely nurse who got down on the ground next to my bed to take blood from my fingertips when my veins refused to cooperate.  I can’t remember each and every one of these amazing people.  However, I am endlessly grateful for all of their help.

Feeling Blue

/ Isaac's Mom / 4 Comments

I know I’ve been quiet the last two weeks.  I  realize that I don’t owe anyone any explanations, but I’ve been in a funk recently. I think it started last Tuesday.  We started telling close friends that we were pregnant with Isaac a bit after the 12-week mark.  On a cold day, we cuddled up on the couch with our 12-week ultrasound images and Facetimed our friends down in North Carolina.  With one particular set of friends, just after we showed them our pictures, they responded with their own.  They were expecting too and just two weeks behind us.  A bunch of our North Carolina friends ended up expecting Fall babies, but no one was due quite so close to Isaac.

Last Tuesday, our friends gave birth to a healthy baby boy.  I saw it on Facebook while I was laying in bed, and, at first, I was okay.  I was happy for them.  Then I started to worry about telling my husband.  Should I tell him?  I had recently told him that another friend of ours was pregnant, and he had told me that he didn’t want to know that.  I ended up waking him up to tell him.  Moments later, I was crying.  I am so happy for them.  It just hurts so much to see what we are missing out on.

The next day was even more difficult.  I woke up in a bad place and things just kept going wrong.  I had to challenge a contractor on the project I am managing, and I stressed for most of the day over how to do it. A package I was excited to receive that day got delayed.  Then the MFM we were supposed to meet with Friday called to say they couldn’t see us Friday and needed to reschedule even though my husband had reworked his whole week to be home Friday.  Then at the end of the day, in response to my questions, the contractor quit.  Every last one of those things ended up being resolved just fine, but I was a wreck on Wednesday.

We ended up getting to meet with the MFM on Thursday.  It went well.  They have a plan, part of which is getting my arthritis under control before attempting another pregnancy.  It seems there is some link between autoimmune diseases and preeclampsia.  They even got us an appointment with a rheumatologist in the same hospital for this week (I had tried independently and was told they couldn’t see me until next year).  I actually left the hospital smiling, because I felt so much hope.  Then, I saw another baby boy had been born to a sweet girl that I went to high school with.  I didn’t have any immediate reaction.  However, then I started thinking more about our new doctors and how seriously they take our care.  It made me realize how NOT seriously our care was taken during my pregnancy with Isaac.  Isaac deserved this care just as much as our future baby does, but he did not get it.

If the doctors had taken us more seriously and paid even half as much attention as they are now, we’d probably be cuddling Isaac instead of figuring out how to keep living after losing a lifetime with our baby boy.  It’s hard to see how easy it is for doctors to help us now when it is too late to save Isaac.

All of this stuff has made be feel a bit uninspired lately.  I’m not excited about my pottery class and I haven’t been able to come up with coherent blog posts.  It’s even resulted in me struggling to write the letters to Isaac in his journal. Times are tough, but I know that’s to be expected.  Hopefully, if I keep plowing forward day by day, things will get a bit more manageable.

A Difficult Week

/ Isaac's Mom / 8 Comments

Isaac’s due date was September 10, 2016.  I counted down the days, weeks and months until that date on a regular basis from the moment it was given to me at an initial ultrasound. Isaac was still the size of a chocolate chip.  When people would ask me, though, about my due date, I would say, “September 10th, but he’s likely to be induced the week before.”  I was on Lovenox, and to ensure that I would not have any blood thinners in my system when I gave birth our MFM recommended induction at 39 weeks.

Our OB went back and forth on whether or not he would follow that advice throughout my pregnancy, but at my last visit, he finally settled on induction at 39 weeks.  That would have been today.  I can’t help but think about what we would have been doing right now.  In fact, I wrote to Isaac last night about how I dreamed it would be today.  His nursery would have been perfect.  His bassinet would have been set up next to our bed.  We’d be nervous but terribly excited.

For the past week, I had been getting increasingly anxious about this day and the week that will follow.  September 10th will always be the date I counted down to and remember most distinctly, but today is the first time I should have been meeting our baby boy.  Instead, he sits in a painfully small red velvet bag on top of one of our dressers.  He’s been gone 7 weeks today.

There are a lot of things I wish I had planned for today, but I really could not get my act together.  I didn’t know how I would feel when I woke up today.  I don’t know how I will feel when I wake up on September 10th.  I wish I had planned the tree planting for one of these days, but I didn’t.

It’s hard not to reflect back on the whole journey now.  It seems like just yesterday it was January 3rd and I was trying to wake my husband up to tell him I thought I’d had a positive pregnancy test.  For some reason, the first half of this summer feels like a lifetime ago.  I wish I could say that I am feeling hopeful about our future right now, but I admittedly feel defeated.  I should have been introducing our son to the world, but instead I am wondering when, if ever, my husband and I will be able to bring a baby home with us.  Our home feels especially empty today.

Happy could have been birthday, Isaac.

Progress

/ Isaac's Mom / 12 Comments

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

/ Isaac's Mom / 9 Comments

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.

The Baby Smell

/ Isaac's Mom / Leave a comment

Babies have such a distinct smell.  I love that smell.  I was so excited to have my own baby for about a million reasons.  One of the million reasons I was excited seems so silly now.  I would have a son, and he would smell – well – like a baby.  There are countless things that seem like cruel jokes when you leave the hospital without a baby to take home.  My heart knew that Isaac was gone, but my body had no idea.  Here’s the thing.  It would seem that the smell I so loved comes from the milk that feeds babies, not the babies themselves.

This meant that for two weeks following Isaac’s birth the smell I so loved followed me around.  From the moment I woke up in the hospital, I kept noticing that distinct smell.  At first, I convinced myself that it was coming from the washcloths in the labor and delivery rooms of the hospital.  The magnesium IV drip made me feel like my face was on fire, so my husband made sure I had a steady stream of wet washcloths to put on my head.  I thought it might be the laundry detergent.  Maybe I was imagining it?

Then the smell followed us home.  Every so often I would catch that baby smell.  I realized it was coming from me.  At first, I found this incredibly upsetting.  It just seemed like a cruel reminder of what we had lost.  While my body initially had no idea that Isaac was gone, I knew it would figure things out eventually. It occurred to me that this smell was temporary.

I was right.  The smell was temporary.  During the two weeks I had the smell trailing around with me, I cherished it.  The smell is gone now and it breaks my heart.  I wish I could make it come back, but I know that will only happen if we manage to welcome a sibling for sweet little Isaac.  Every so often, I get the faintest whiff of the smell.  When I try to catch it with a deep breath, though, it’s not there.

 

The Wrong Sort of Milestone

/ Isaac's Mom / 1 Comment

Today was my second appointment with my grief therapist.  First, to those going through something similar, I strongly recommend talking to someone who is experienced in dealing with the loss of a baby.  I’m a big believer in therapy as a general matter, but in this specific instance, in particular, it is good to have someone who will be able to recognize whether you are dealing with things in a healthy fashion.  Second, today’s appointment got me thinking about milestones.

When you are expecting a baby, you go through a huge list of milestones.  There’s the first time you see the heartbeat, finding out the gender, viability – and the list goes on. Then there are the milestones you expect to have going forward.  There’s the birth of your baby, hearing the first cry, baby’s first smile, crawling, walking, and limitless other things that you are excited to experience with your baby.  These are the things you look forward to when you are pregnant.  These are the things you daydream about.  These are the things I daydreamed about.

Then we lost Isaac.  We won’t get to experience those milestones with Isaac.  We won’t see him smile, or find out who he would have most looked like.  We won’t know the sound of his cry or when he would have decided to crawl.  Instead, we face a different set of milestones.

I had my first solo outing last week.  My husband had to have a first day back at work.  Eventually, I will make it to the grocery store alone or to the mall alone.  Each time I see a new person, who hasn’t seen me since I was big and pregnant, is a milestone.  Someday, I will have my first up close and personal encounter with a friend or family member’s baby, or a pregnant woman.  Today is a milestone.  Today marks exactly one month since Isaac’s birth.  September 3rd will be the day I was expecting to be induced.  September 10th will be Isaac’s due date.  I was once counting down to those last two milestones with excitement, now I look forward at them with dread.

Pregnancy seems to make you hyper aware of time.  You count every single week.  Then when a baby is born, you mark the passage of time by counting how many weeks old your baby is now.  Those instincts don’t go away just because you no longer have your baby.  Rather, you just end up looking at a new sort of milestone.  They are sad milestones that remind us of what could have and should have been, but they are all we have.

Doctors Are Supposed To Know Everything

/ Isaac's Mom / 1 Comment

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.

 

 

Loss

/ Isaac's Mom / 2 Comments

Part of me hopes that if you have found this page, it is not because you have been through what my husband and I have gone through.  The other part hopes that if you have gone through something similar, this site might bring you some comfort.  I suppose I am getting ahead of myself.  On July 16, 2016, at 32 weeks pregnant, I gave birth to a son, Isaac, just 30 or so hours after being told he had passed away.  I had done things the right way.  I had exercised regularly, avoided cold cuts, eaten well, slept well – the works.  However, I had developed HELLP Syndrome, a dangerous pregnancy complication, related to the much more commonly known Preeclampsia.

To be clear, I had noticed the telltale symptoms of Preeclampsia weeks prior to our loss.  I’d learned about them in our Prepared Childbirth class. In fact, I had asked my OB at my recent appointment about my suddenly elevated blood pressure, rapidly worsening swelling and seeing spots in my vision.  This doctor, the man who delivered me 29 years ago and was supposed to be monitoring my high-risk pregnancy, told me everything was normal and ushered me out of his office.  I later discovered he didn’t even note the concerns in my chart. The symptoms continued, I developed a pain in my chest that radiated through to my back.  It was my arthritis, I told myself.  I gained 9 lbs in 3 weeks, but the doctor wasn’t concerned and he knew way more about pregnancy than this first-time momma to be.  My family and I joked about my feet, which no longer fit into any shoes but my flip flops.  I joked about my new superpower, the ability to see my own cheeks.  None of us realized how bad things had gotten.

The hospital apparently knew what was happening to me pretty soon after realizing Isaac had passed away.  Although, in an effort to keep me calm, my diagnosis was discussed behind closed doors.  I knew something was really wrong with me – they couldn’t get my veins to cooperate, I had to have my blood pressure constantly monitored, and some poor anesthesiologist had to explain to me that because my platelets were low, an epidural was out of the question.  At one point I insisted on executing a living will.  Despite an IV full of pain and anxiety medication and limited information, I knew something was dangerously wrong with me.

I have since filled in most of the gaps with the help of my husband, parents, and sisters, who all rushed to my side when they heard the terrible news.  I will save that for another time.  The sad and unavoidable truth is that 3 weeks and one day ago, we lost our baby boy.  We’d had huge hopes and dreams for our baby boy.  The nursery was well underway, the baby shower complete.  We were supposed to be on our last vacation as just a couple.  Instead, we were forced to say goodbye to a little boy we will never get to know.

If I haven’t lost you yet, congratulations.  The past three weeks have been a rollercoaster, and I expect things to continue on in an unpredictable and difficult manner.  I’d been thinking, though, that maybe our story could help other couples.  Maybe our story can help another couple identify a problem before a tragic loss, maybe it can comfort someone else who has lost a baby far too soon.  I’m going to be brutally honest on this blog.  I will tell our story in more depth.  I will share some, if not all, of the letters I have written nightly since leaving the hospital.  I will share the ways that we are grieving, the ways that we are choosing to remember the perfect baby we will never again hold.  If it doesn’t help someone else, it will at least help me.

 

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Our beautiful son, Isaac.

 

 

Day 19

/ Isaac's Mom / Leave a comment

Agust 5, 2016

Dearest Isaac,

Your Daddy went back to work today.  I missed him so much even though it was not a whole day.  I did OKAY.  I woke up, I took care of Mowgli and I even took my medicine.  TI took me 4 hours, but I eventually ate my breakfast (and lunch).  I didn’t feel like doing anything, so I watched TV.  I never realized how many TV episodes have pregnancy, birth or baby loss in them.  One episode featured the birth of twins.  I thought I was fine.  I thought that if I could watch, I’d get closer to being able to go places.  When the babies gave their first cries, I totally lost it.  I knew I was missing out on cuddling you, nurturing and loving you. I didn’t realize how much it hurt that you were silent and still when you were born nearly 3 weeks ago.  I guess it didn’t hit me because I was so out of it that night.  I don’t even remember what it felt like to push.  I just remember how you felt coming out (it was nothing compared to the contractions, though).  We were robbed of that happy moment when the baby finally comes out and cries.  At least it was peaceful, I suppose.

Your grandpa reached out to CHOP to help us find the best medical care for the future.  We ended up speaking to one of their doctors. She was nice as can be.  She can’t treat me, but she can help get us the right team. She already had someone in mind for us to contact.  She basically confirmed my suspicion that you and I didn’t have sufficient medical care.  I am so sorry I did not realize it sooner.  She did, however, put some hope back in Daddy’s and my life.  She said we CAN try again.  She also suggested that trying could commence at 4 months instead of the 6-12 months we heard previously.  It would still be risky.  Now that I have had HELLP Syndrome, there is a 1 in 4 chance it will happen again and it would likely happen earlier.  BUT if it happens, they would catch it sooner.  Things didn’t have to end that way and, hopefully, they never will again.  Mommy couldn’t bear it.

I am so broken over losing you, but now I have a spot of hope on the distant horizon.  I have to get healthy, to eat well and to exercise.  It’s what I know you would want and what must happen for the sake of your future sibling.  I will still count the days and weeks from your birth, still count down the days until your due date, until we could have taken you home.  But now I can also count the days until we can try again.  To be fair, “trying again” seems wrong.  We succeeded, the first time.  We made a wonderfully beautiful miracle named Isaac.  Nothing can ever change that.

Love you to pieces,

Mommy