Boys, Girls or One of Each?

Tags

Going into this pregnancy, I thought the silver lining to being extremely high risk was that I would get to find out what I was having very early.  The Maternal Fetal doctors use ultrasounds with higher resolution and give a clearer picture.  And, I was having very frequent ultrasounds at my regular OB appointments too.

Finding out at 14 – 15 weeks would be great.  I could start planning the nursery theme/ color scheme and even start a registry long before any potential bed rest orders.

At 14 weeks and 3 days I had an ultrasound, and much to my disappointment while they had an idea on Baby A’s gender, it was far from definitive and Baby B was not willing to cooperate at all.

I knew I had another appointment with my OB a week and a half later, and I sure I would find out then.  After all, I found out at 16 weeks Ansley was a girl. So I was sure I would know then.  Turns out my OB was out of the office and I saw another doctor at the practice, who didn’t feel she needed to ultrasound me again so soon.

Now at 18 weeks and 3 days, I return to the specialist for another growth scan.  Fingers crossed both babies cooperate and I will soon know if I am having boys, girls or one of each.

Pregnancy and Infant Loss Remembrance Day

Tags

,

 

Many people know October as Brest Cancer awareness month, but it is also pregnancy an infant loss awareness month.  In 1988, President Ronald Reagan designated October as the month to bring awareness to infant deaths, including miscarriage, ectopic pregnancy, stillbirth, and SIDs or any neonatal death.

“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower.  A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That is how awful the loss is.” – Jay Neugeboren

Because there is no word in the English language to describe this type of loss, it often silences those grieving.

October 15 is Pregnancy and Infant Loss Remembrance Day.  It is observed in the US, Canada, the UK and New South Wales.  The day is observed with an International Wave of Light.  To participate light a candle at 7 PM in your time zone and leave it burning for one hour.  This will create a continuous wave of light around the world. I will be lighting my candle in honor and memory of my daughter Ansley as well as all babies that have died during pregnancy, at or during birth, or after birth.  Will you join me in remembering babies gone too soon?

“An Angel in the book of life wrote down my baby’s birth. And whispered as she closed the book – Too Beautiful for Earth.”

 

 

Reality Check

Tags

When I first learned that I was expecting twins, I reached out to my HELLP Syndrome message boards to see if anyone else had gone on to have a successful subsequent twin pregnancy following class 1 HELLP.   I was told about a lady in the UK, we will call her Ann, that was a member of another board and was currently in her second trimester with twins.

I reached out to Ann and introduced myself.  I soon discovered we had very similar histories; both of us losing our daughters early in the third trimester when class 1 HELLP stuck suddenly.  She was advised much like me to wait at least a year to try again and had many of the same tests done looking for anything that gives a clue as to why this happened.

At exactly the one year mark, Ann and her husband decided to try again.  Surprise… they were expecting twins.  While she felt comfortable with her doctors, she also was working with a doctor at a major research university in the US.  And, while the doctors didn’t always agree on her course of care, she was being monitored very closely. She was actually being watched closer than I am.  She was having blood work done weekly and in office BP checks twice a week.

I received an email from Ann this morning.  She wanted to let me know at 25 weeks she developed HELLP again.  And, again they quickly deemed her life was in grave danger and made the decision to deliver the twins.  Neither twin survived.

My heart goes out to Ann, she has no living children, but now 3 babies in heaven.  I cannot fathom going through that kind of loss again.  It is a scary reality.  Ann was the only one I could find in more than 17 countries (that is active on these boards) that was also expecting twins.  I know that just because her story ended in another loss, it doesn’t mean mine will as well, but I was really hopeful she would have a successful pregnancy and that I could use that as inspiration.  But instead, her story now reiterates the trepidation that I have already been feeling.

Correction: Baby makes 4 and 5

Tags

Yup, that’s right.  Its twins!

I am certainly no expert at reading ultrasound results, especially when I was only 5 weeks and 2 days along.  But as I looked at the screen, one thing was becoming more and more clear-there were TWO.  At first I wasn’t so sure, I thought maybe as she changed the angle of the ultrasound that I was seeing the same one and it just gave an appearance of being 2.  As I continued to watch the screen, they both appeared at the same time.  “It looks like 2, is it twins?” I ask the tech.  There are defiantly 2 she responded, and quickly asked if I was on fertility drugs. Nope defiantly not on fertility drugs! She said it is very early; the heartbeats won’t start until next week.  She expected to see me back then, to confirm that they are both developing, but that would be the doctor’s call.

I was shocked and excited, but I knew this was not good news from a medical stand point.   The only thing that could further complicate an already highly complicated pregnancy would be twins.

As I sat in the room waiting on the doctor, the nurse walked in… I see we are having babies!  Yes, I say, but I don’t think this is good thing; not with all the complications I had last time.  She said we will just wait and see what the doctor says.

I continued to wait for the doctor, trying to wrap my head around twins.  I hear a knock on the door followed by a long gasp and “OH wow” and it wasn’t in an excited tone. Got my confirmation, while this was very exciting news, it was not good news.   She walked into the room staring at the ultrasound results.  Well this changes things she said.  Is this worst case scenario I ask, No, but yes she responded; It will make things more challenging than they already would be.  I can no longer make any promises that things will go better this time. Granted a lot can change.  There is a high risk of miscarriage and we don’t know that they will both develop.  I need to see you back next week, and then we will start you with Maternal Fetal (the high risk specialists) as soon as we determined it is a well established pregnancy.

Before we left the room she asked me, “do you have your prenatal vitamins, and Folic Acid remember you need 4 mg, and um… anxiety medicine.”  I can take that pregnant I ask, no, but I may need some she said joking.  As we walked out of the room, the nurse offered her congrats again on the twins.  No, my doctor said almost scolding the nurse.  Realizing she sounded harsh, she quickly changed her tune, okay congrats on being pregnant…we will all get through this together.

As I left the appointment my excitement grew, even in the face of the pending challenges, I was pregnant again and this time there were 2 babies.

I met Chris for lunch.  He had still had no idea of the news I had just learned.  When the moment seemed right I told him… I have good and bad news and it is the same news. He looked at me puzzled.  You know how we decided we would only do this one time, due to the risks even though we really wanted more kids.  Well we are getting more kids, and we only have to do this once.  Its twins!

Mastering the art of fake drinking

Tags

The weekend after finding out we were pregnant we were heading to a party. I didn’t want to miss this get together; it was for some of our friends that had moved ½ way across the world.  They were only in town of brief amount of time.  Plus, it was going to be a lot of fun.

 I am not a heavy drinker typically, but if I drank nothing surly questions would arise.  Questions I was not ready to answer. I was still getting used to the idea.   And, I had not seen the doctor yet.  Go figure, the day I find out I am pregnant her office is closed and would remain closed half the week.  They were moving to a new location.  My first appointment wouldn’t be until the following Tuesday.  I would be 5 weeks which I realize would be a very early appointment for a normal pregnancy, but this one would be anything but normal.

Anyway, back to the party.  I put a lot of thought into what I was going to do.  I could bring a bottle of red wine.  Of course, the bottle would actually contain watered down grape juice, but I am not a big red wine drinker, so that would seem odd especially to my close friends. As much as I tried, I couldn’t figure out how to fake white wine.  As I sat pondering my options, I took a sip of my sparkling water and just like that, the little light bulb in my head went off.  I would get Smirnoff green apple, dump out the bottles and refill them with my raspberry apple sparkling water.  I would only have to fake a couple, after all I was driving.

 

My plan was working great!  Nobody had any idea that I was actually drinking water. At one point, the topic of Chris and I trying again came up in conversation.  I was asked if we would tell people right away or wait the traditional 12 weeks.  Time to test my poke face… I said we weren’t sure.  I told them Chris had once mentioned not telling anyone ever.  Well at least not until we had the baby in our arms.  I joked that is not really going to work.  Guess we will just have to wait and see.  Everyone seemed continent with that answer.  I was then asked if the doctor thought I would have any fertility issues.  I was sure I was going to give it way on this question.  No, I said, trying so hard not to smile.  But again, nobody seemed on to my little secret.

The party was a success!

And baby makes 4

Tags

, ,

July 30, 2012 – It is official…. I am pregnant.

We got cleared from the doctor and decided we were ready to try again.  Within the past month I must have seen a dozen rainbows which I took as a good sign. Each rainbow reassuring me that we were making the right choice to try for another baby.

I had planned to take a home pregnancy test on Saturday, but I just couldn’t wait, so Friday after work I went ahead and took the test.  It was negative.  Better luck next month.  After all, there is only a 25% chance of getting pregnant even if the timing is right. The weekend came and went.  Monday as I was getting ready for work, something urged me to take another test.  The same negative line popped up rather quickly and as I was getting ready to throw it away I noticed another line starting to form.  I stared at the test as the second line got darker and darker.  I was speechless. I walked to the bed where Chris was still laying and handed him the test.  Not really yet awake, he grumbled for a minute, realized what I handed him and I could tell had the same feelings I did.  He got up, followed me back into the bathroom; he was not saying a word and neither was I.  I was still trying to wrap my head around what I was feeling. This is what I had wanted- what we had both wanted! But, I was nervous, scared, and a little sad that I was not overjoyed like I was with Ansley and at the same time I was happy, very happy, but I wasn’t excited.  I was on the verge of tears and I still can’t tell you if they were good tears or bad tears, when Chris finally said, “Guess we are good at the getting pregnant part”.

I took one more test for good measure and told Chris I would call the doctor and let her know.  I knew she wanted to see me right away.

I drove to work as if it were just another day.  I tried to process the news; I tried to force myself to be excited, but my mind kept racing back to Ansley, my last pregnancy, the only frame of reference I knew.

Mental Healthcare in America

Tags

, , , ,

It is a taboo topic, but in the wake of the tragedy in Colorado, I would like to share my experience with mental health.

I had never experienced an anxiety attack or depression prior to losing Ansley.  But as I tried to re-engage in life, I was often overcome with a feeling that is hard to describe.  It was paralyzing.  It was a new feeling and I didn’t know what to do with it.   It was anxiety attacks.

At one of my many doctors appointments, I had one of my anxiety attacks, but it quickly changed over to uncontrollable sobs.  My doctor asked that I seek counseling.  She was unsure if I was suffering from postpartum depression or grief and she didn’t feel qualified to make that call.  She explained, in a patient that had a normal birth experience, she would be sure it was postpartum, but with me it wasn’t that easy to determine.  

I began looking for a therapist to talk to that would be covered by my insurance.  To my surprise my insurance doesn’t cover mental health.  They simply offer a 1-800 number; a glorified suicide hotline.   And, I soon learned this is a normal practice.  Companies are not mandated to offer mental health, so many don’t.  I find this troubling; Dermatology is covered (treatment of the skin) but treatment of the brain is not? It seems like all the other organs in the body fall into basic medical coverage, but not the brain.  Brain illness is something different, something less legit or seemingly less important, at least according to our insurance policies.

Finding a therapist isn’t an easy task either.  It is much like dating.  You aren’t going to marry the first person you go out on a date with.  It took meeting with 3 therapists before finding one that I felt comfortable even talking to.  And, therapists aren’t cheap.  Each meeting cost between $75-200.  The one that I decided to see on weekly basis cost $125.  I saw her weekly, for about 5 weeks, before transitioning to every other week for the next couple of months.  All in all, I spent about $1500 in a few months on mental health care.  They were by far the most expensive conversations I had ever had, but they were helpful in getting me moving forward and getting back to my life.

Bottom line, mental illness is treatable.  There are medications readily available.  So why do we make it so difficult? While many people argue about gun control laws after a senseless shooting like the one in Colorado last week, I argue that we need to take a long hard look at our mental health care system.  For someone to open fire in movie theater, a school, a summer camp or a shopping mall, they must have some mental health issues that need to be addressed.  I also don’t think their mental health issues can be resolved with an 800 number and many state hospitals and institutions have been closed due to financial reasons.  The options for mental health are few and far between especially for those that have limited financial resources.  I do realize that someone would have to seek help to even benefit from mental health care, but maybe, just maybe, if it wasn’t so expensive and was readily available {read: part of mainstream health care and insurance} a future tragedy could be prevented.

Questions

Tags

, , , ,

One of the challenges I have faced over the past 16 months is quieting all the questions that frequently fill my head.   Questions most of which don’t have answers.

  • Why me?  Or what did I do to deserve this?
  • Did I do something to cause this?
  • Could I have done something to prevent this?
  • Will this happen again?

…Just to name a few

I have spent hours and hours reading medical journals and anything else I could find on HELLP Syndrome seeking answers.  There are tons of theories and even more statistics, but at the end of the day they all say the same thing.  Because there is no known cause; there is no known way to prevent HELLP and the only treatment is to deliver as soon as possible.  How can this be, with so many advances in modern medicine that so little is known about this deadly condition?  {Yet another question}

As I researched, the question that really got under my skin was: why had I never heard of this before?  I read baby books and spent countless hours on baby websites, not once had I heard of HELLP Syndrome.   I was very annoyed when I went to the March of Dimes website and there was no mention of HELLP under pregnancy complications.  There moto is “Working together for stronger, healthier babies”.  (I am glad to report that as of April of 2012, it is now listed.  Not sure if it was due to my emails as I never got a reply, but regardless, glad it is listed now)

At times, I have felt even some in the medical industry don’t really know much about HELLP.  I say that not because of my OBGYN or my primary care doctor, in fact I have been very pleased with the care I have gotten from both of them.  But, over the past year, I have had to see countless doctors.  The first doctor that shocked me was a neurologist; I suffer from migraines and have seen various neurologists for many years.  He told me on several occasions he had never met anyone that had a case like mine; he had only ever read about it.   Months later I had to see a cardiologist, as were talking he had a nurse taking notes.  She stopped the conversation to say, I don’t know how to code this.  I don’t see HELLP as a condition in our system and I don’t know what it is.  He told her to put it under either PreEclampsia or Eclampsia and note it was HELLP.  At least he knew what category it would fall into.

The irony is while I have had doctors tell me they aren’t exceptional familiar with HELLP, every labor and delivery nurse I come across seems to feel they are an expert on the topic.  I say they feel they are an expert because it takes very little time talking with them to realize they usually are not.  I had one go as far as to tell me I should sue my doctor for missing my PreEclampsia and letting it get all the way to HELLP.  When I told her I never had PreE she said, “No, that is impossible.”  Sorry to tell her, it is very possible. My blood pressure was good until the day it all went wrong and I was not swollen at all.  I had another nurse tell me “She sees HELLP all the time, and whoever told me it was rare was wrong”.  No comment on that one.

But, as I mentioned earlier my main doctors have been great.  When I first saw my primary care doctor and told her what had happened, she asked me for my OBGYN’s info.  She promptly called her to discussed my case and asked if she could send over all of my records. She has gone to great lengths to educate herself on HELLP Syndrome.  And, any test she runs she sends over to my OBGYN.  As the patient I really appreciate this, it is nice to have your doctors on the same page and it prevents any unnecessary double tests. 

As I approached the one year post HELLP mark, my primary care doctor wanted to do a complete physical to make sure my body had recovered fully.  This would also start the process of me (and the doctors) determining if we would try for another baby.   In addition to the normal physical tests, she tested for various types of Thrombophilia.  She explained that my insurance may not cover these tests, since I had not had multiple miscarriages, but they only costs a few hundred dollars if not covered.  They tested me for both  Leiden Factor 5  and MTHFR .   

A few days later I received a call from my doctor.  The test results were in.  I tested positive for 2 variants of MTHFR and they were running an additional test to see if my homocysteine levels were affected, which they were not.  She explained about 30% of the population, including her, has at least one of these genetic abnormalities.  And really, it just means extra folic acid and maybe blood thinners in a future pregnancy.

As I processed this news, I got angry.  You mean there was a simple blood test that could have been done?  And, while maybe it wouldn’t have made a difference, maybe it would have. But, it isn’t a standard pregnancy test because someone behind the desk at an insurance agency won’t cover it unless you have had multiple miscarriages or like in my case test positive.  I realized the link between MTHFR and HELLP is nothing more than one of the many theories, but still… I am a member of a HELLP survivor board and almost everyone on that board tested positive.   Maybe a coincidence or maybe something more, guess I will add this to my list of unanswerable questions.

Nursery

Tags

,

Deciding which room would be the baby’s room was not a hard decision for us.  After all, we lived in a 2 bedroom house.  The question was what do we do with the guest bedroom furniture and the office?  The room was already pulling double duty. We decided to get a storage unit for the guest bedroom stuff, but what to do with the office. The office was a necessity as I sometimes work from home. That is when we decided to take on a rather major home renovation.  Our house had a double master floor plan, meaning the 2nd bedroom was almost as large as our master and had a large walk-in closet. The closet contained its own window.  I decided if we knocked out the wall at the top of our stairs, it would expose that window allowing natural light to flow into a normally dark hallway and provide the perfect space for an office nook.  And, luckily for me, I married a very handy guy who could handle that project. 

The first thing he did was frame out 2 new closets inside the bedroom with an opening in the middle.  He figured if he built the new closets first we were less likely to end up on HGTV’s DIY disasters.  Once they were framed, he took to demoing the wall.  And, wow what a difference it made to let the sun shine in. Finally we had to drywall in the old doorway to the closet.  The whole project took a couple of months and there were only a few bumps in the road. 

Closets being framed in

Finished closets

The new office space looked great and the space worked perfect.

Office Nook

Decorated Office Space

We had decided to put the crib inside the opening between the 2 closets. So, the last step to the renovation was Chris’s surprise for me.  He ordered fiber optics and created a starry sky, wired to a light switch, so she could sleep under the stars every night.    It was a very cool touch.  By this time, we had found out it was Girl and color and design selection was under way.  I am not a pastel pink kinda girl, so I went will less traditional colors; yellow, blue, red, and brown for the bedding.  We did most of the room yellow with a blue accent wall and we did her bathroom the same shade of blue.  I realize prior to the bedding getting added most people would look at the nursery and assume it was boy based on the colors. 

The nursery colors with a pillow from her bedding

Her closet had quickly filled with a newborn – 18 month wardrobe.  We had her home from the hospital outfit and even her Christmas dress.  She was going to be a well dressed little girl. 

So when everything changed, and we learned she would never be coming home to her nursery, the question became what do you do with all that stuff?  What do you do with the room? The room that you had dedicated to her. The room you had poured your heart and soul into; making sure every last detail was perfect.

Chris came home the day before I was to be released from the hospital and gathered all the baby stuff (which had spread out all over the house) and put it in the nursery and closed the door.  I took me 3 months after she was gone to even brave opening that door and a full additional month to actually step foot into ‘Ansley’s room.’

It wasn’t long before Chris wanted to turn the room back into the guest bedroom it once was.  To me, that was impossible.  It would always be Ansley’s room.

As time went on, we eventually had house guests again.  And, every time someone slept in Ansley’s room, my heart broke just a little bit more. Reflecting back now, maybe that was one of the reasons we moved away from our first house.

Sunsets and Fire Rainbows

Tags

, , ,

Since moving to our new house, I have remembered how much I love sunsets.  My apartment in college had a great sunset view as did my first apartment in the real world.  But, when Chris and I bought our first house a great sunset view was not on the must have list.  For 6 years, I forgot how magical sunsets are. 

Before putting an offer in on our new house, we drove by after work one evening in an attempt to make a final decision.  The timing was perfect, we realized we had a magnificent sunset view from the back porch.  We now spend many evenings sitting on the back porch, sipping wine and watching the sunset.

On Tuesday, we realized we were coming up on the summer solstice. We decided to celebrate the longest day of the year by taking the boat out after work.  It was a beautiful evening on the lake.  We stayed on the water to watch the sunset.  And as we were cutting across the lake to the dam, the best spot to watch the sunset, I spotted something in the clouds.

I was absolutely mesmerized by the sight.  I asked Chris, do you see what I see?  Just to the left of the setting sun there were a few clouds, but not just any clouds.  They were rainbow clouds.  I had never seen such a thing. I have since learned this phenomenon is called a ‘fire rainbow’ I grabbed my iPhone to try and snap a few pictures. The picture doesn’t do it any justice, so I found one on Google images with better resolution that captures what I was actually seeing. 

Rainbow Clouds over Lake Lanier

Rainbow in the clouds – image found on Google images

It wasn’t long ago that I wrote about Searching for my rainbow.  And here is a rainbow right in front of me, but not following a storm.  In fact, it is a much more rare sight than a traditional rainbow.