1 Month

It's been one month since I lost Little Man. One month since I've been pregnant. Time has both creeped by and flown at the same time.  This week we have to go pick up Little Man's ashes....that will be the end of the saga (well....minus the medical bills that I am sure will start rolling in).  I am both happy and dreading it as well. I don't want him to be forgotten. It's not like he was miscarried...we had to chose to end the pregnancy quite far along to prevent any suffering he would sustain after birth. Ugh! I still am soooo angry that we had to make the decision.....a miscarriage would have been less painful!

So, after the procedure, I went home empty. Physically, I felt surprisingly well! The pain from before the procedure was completely gone. I was bleeding, not not heavily. I wasn't nauseous. The rest of the afternoon we hung out on the couch and I napped off and on. Co-workers began sending flower and plants. At the time, this was mentally difficult for me. As appreciative and thankful that I was, I couldn't help but feel like I was being rewarded for ending my pregnancy. Each package that arrived made me burst into tears. I didn't want any gifts...I wanted my baby! I know now that it was mostly hormonal craziness. My pregnancy hormones were crashing at breakneck speed. For about a week, the amazing support everyone around us showed was difficult for me!

I was shocked at everyone's love and support. Not once did we get any disapproval over the decision we made. We were worried that Greg's parents and brothers would not understand, but they did! Everyone told us that it was an awful situation to be put into but that we made the right decision. It was hard to see that for the first few dark weeks. I felt like an evil monster for what I did. We made the decision to end the pregnancy out of love. We chose to hurt and suffer so our little man wouldn't. I can't describe the emotional pain while trying to accept that fact.

I spent the next week trying to get back to some sort of normalcy. Although, all I could do was read stories of couples who made the same choice we did and cry over their stories  Finding other couples who have terminated pregnancies, especially for SMA, made me feel a little less lonely. I can't believe how often medical terminations happen! This needs to be talked about more openly and not shoved under a rug. Terminating for medical reasons is not an evil thing.....its the opposite! We all wanted our babies but didn't want them to suffer! It is the most heartbreaking decision and experience to go through....I wouldn't wish it on my worst enemy!

About 9 days after the termination, I realized we never heard from the Chaplain about what we wanted to do with the remains. I remember the physician telling me at 2 different times that she would be calling around a week after to discuss the options. Greg remembered getting a paper about it but forgot at the time because he was given the information when the physician came out to tell him the procedure was over and give him the footprints. My mom had told me he completely broke down at that time. I don't blame him for forgetting about the paper. Greg found the paper still in his coat....it said we had to call back within 5 days if we wanted something privately done with the remains! It was now 9 days! We had finally made the decision to have him cremated so he could be home with us and not a miscellaneous baby cremated with all the other termination and stillbirths at the hospital and now it was too late!

I went back to work that following day. I was so upset over not being able to get him cremated that it caused me to regress mentally. That day was so difficult....I kept having near panic attacks! Luckily, I was able to talk myself down from them but they were so exhausting. Having to go into patient rooms and put on a smiling face was torture. I just wanted to scream and cry.

The following Monday Greg called the hospital without me knowing. We could still have the baby cremated! The Chaplain was supposedly on vacation and that is why we didn't hear from her. (I'm not sure I believe that but whatever at this point). Greg was given the number of the cremation place in our area. We went that Thursday to sign papers.

So...next anger inducing experience. Did you know what there is no difference in the price of cremating a 22 week fetus who weighed 1 pound and a 400 pound man?!?! It cost $615 to have our little guy cremated! The amount of remains we will get will fit in a nail polish bottle!! Please tell me that its the same amount of work as it is for a full grown adult!? These people are making bank off our grief!!!! I was sooooooo upset!! Many other states and hospitals that have arrangements that decrease the cost significantly and some even don't charge at all for perinatal and infant deaths!

However....its now in the past. This whole ordeal is almost over. I found a quote from The Little Prince that I love. I was going to use the book as a theme for the baby shower, so it is completely fitting:

Devastation

That's not even a strong enough word.  Honestly, there isn't one.  I have always thought of myself as a strong person....other people have told me that I am abnormally strong.  I'm not sure that I am particularly strong.....I just know how to compartmentalize life and experiences.  When you work as an inpatient nurse dealing with chronic illnesses, this character trait (flaw?) is necessary to go to work every day.  However, this experience took that trait to a whole new level.

On June 30th, life fell apart.....at least it felt like it did.  The day started with a 5 am call from work asking if I wanted to stay home as there were enough nurses scheduled for the day.  I took this as a sign.  Amniocentesis test results were due back at anytime.....and I just had a gut feeling today would be the day.  So, I took the offered day off and started obsessively checking my email.  Our genetic counselor was going to email me when the results were in so that Greg and I could call back when we were both able to hear the news at the same time.

At 11:30 that morning, the email came in.  I immediately broke out in tears.  This was it....this was going to determine whether or not we were going to keep the baby we had been growing and loving for the past nearly 6 months.  I quickly texted Greg at work.  He had a meeting until 12:30 pm and we could call after that. I don't know what I did for that hour...but I know time was standing still.  12:30 came and I dialed the number to conference call the counselor with Greg.  She didn't answer.....lunchtime, of course.  Greg had another meeting until 2 pm.  I literally just laid in bed until that time.  Time wouldn't move, my stomach was in knots.  At 2 pm, I made the call again.  The counselor immediately said the words...."I wish I had better news."  I didn't hear anything after that. My vision went black and there was a strange white noise in my ears. Thankfully, Greg was on the phone to be able to continue talking to the counselor.  When I could hear again, the counselor said she would be in the office until 5 pm once we made a decision of what we wanted to do.  Greg immediately left work and was home within 30 minutes.

We had to decide if we were going to carry the pregnancy to term and play the wait until the baby died game or terminate the pregnancy.  At the immediate time, I had no idea what to do.  During the wait for the amniocentesis results, we had decided we would terminate if the baby had SMA.  However, now that the result was real, the thought of ending the pregnancy sounded cruel!  How as a mother can you be expected to make the decision to end a pregnancy that was so wanted?!

Greg and I spent the rest of the afternoon crying and talking in bed.  After much discussion and playing devil's advocate, we decided we could not bring a baby into the world just to make him suffer.  SMA is such a painful disease without any cure.  Even the treatments are extremely painful. A baby cannot comprehend the reason for suffering.  We decided we would terminate.

We called back our genetic counselor and she gave us a number of the physician in the hospital that would do the procedure.  I called the office just before it closed and was told the physician's nurse practitioner would call us back as soon as she got the message.  She never called back that next night....I was going to have to talk to her while at work the next day.

I did not sleep at all that night.  I walked in the next day like a zombie.  I tried to pretend that everything was normal.  However, my co-workers took one look at me and knew the results were back and they weren't good.  I went through the motions of work...putting on a smiling face for my patients and trying to cheerfully lie when they asked me about my pregnancy.  The NP called me late that morning.  I had 2 options to terminate.   I could either be induced and have the baby like a normal delivery or I could have a surgical procedure called a D & E (dilation and evacuation).  The procedure was only performed on Tuesdays and Wednesdays so I would have to wait a full week before it could be done.  Greg and I decided we did not want any future deliveries to be associated with the death of our first child, so we chose to have a D & E.

The rest of that week was a mixture of pain and determination.  I was so heartbroken over the chance we had to make but I was determined to enjoy the last time I would have being pregnant with our little boy.  Anytime he would kick or move, I would smile and then cry.

The following Tuesday, we arrived for our first appointment.  The physician was kind and seemed non-judgmental, so I felt a little better.  However, as soon as she walked into the room I burst into tears.  We talked about why I was there and she again went over options and what the D & E would entail.  I then went into a procedure to have laminaria inserted into my cervix.  Laminaria are basically seaweed sticks that help start dilation of the cervix.  I wish I had been told to take ibuprofen before going in but the physician numbed my cervix with a lidocaine injection which I think helped.  8 sticks were (painfully) inserted and I was sent home to relax until the next day.  Ha....relax.  Basically, cramping and contractions started by the afternoon and I was in pain the whole night.  I was given a Norco and high dose ibuprofen prescription to help through the day.

My mom came up that afternoon to stay with us for a few days.  She brought a big stuffed elephant and an elephant necklace for reminder gifts.  It was strange....the only nursery theme I had liked was elephants, but I didn't tell anyone of my plans because we weren't going to decorate a nursery until we moved to a new house next spring.  To me, it was a sign that elephants were going to be Little Man's theme.

We spent the afternoon and evening watching TV and relaxing.  That night was horrible.  I was having nightmares all night.  I woke up at 3:00 am in horrible pain.  I took the last pain medication I was going to be able to have since I needed to be NPO (no food or drink) before the procedure.  We were at the hospital by 6:30 am.  I checked in and was taken to pre-op.  I was in so much pain at this point.  For some reason, the nurse would not start my IV and said I had to wait for the anesthesiologist to do it.  It took about 45 minutes, but finally my IV was started (coincidentally, the anesthesiologist was the husband of the pediatric nephrologist I work with) and I was given some Versed to relax.

I was taken to the operating room shortly after.  The physician was awesome and held my hand and talked to me until I was put under general anesthesia for the procedure.  Next thing I remember was waking up and being rolled back to recovery.  Before I even knew I was speaking, I asked the first year resident if the baby felt any pain.  She assured me he didn't.....although it did not make me feel any better.  Emptiness was the first feeling I noticed.  I wasn't in any pain, but I felt empty down to my soul.  The was such a heartbreaking sensation.  He was gone....I lost a child before I even had one. 21 weeks and 5 days into pregnancy.....gone.

I was in recovery for less than 20 minutes.  I felt fine after the anesthesia.....no nausea or pain.  I drank a can of ginger ale and a few crackers.  Greg and my mom were retrieved from the waiting room.  The nurse removed my IV and I went home.  It didn't strike me til later how odd that was. After general anesthesia, typically policy states you need to be watched for at least an hour.  I saw the nurse for maybe 90 seconds the whole time in recovery.  I don't think anyone wanted to be my nurse due to my procedure.  The whole time from pre-op to recovery, I wanted to be able to explain WHY I was there.  The computer only said second trimester termination.  I am sure so much judgment was passed behind the scenes.  UGH!!!! No one even bothered to ask me WHY! Come on! I am over 30, married, and work a the hospital where I had the procedure.  I am very pro-choice for any reason a woman would have....but I wanted the respect that I was pregnant because I wanted to be and did not have a choice to terminate. How could I have let my baby be born just to suffer?! I wanted to explain to every person there caring for me.

I headed home to face the worst few weeks I have ever experienced.

Bad News

So, I last left off with Greg and I finding out that we were both carriers of SMA. That meant that every pregnancy we have has a 25% change of having a baby affected with SMA.  In that same note, 50% of the pregnacies would result in a baby that was a carrier of SMA (like Greg and myself) but would not have the disease, and 25% would not even be a carrier at all.  That same week, I was rushed in to get an amniocentesis.

In this procedure, a long, very skinny needle was put through my abdomen and into the uterus to obtain amniotic fluid. It was not very painful at all and they did this while watching via ultrasound to make sure the baby or the placenta was not pierced by the needle. We met with a genetic counselor before the procedure to go over genetic diseases and options. We decided the counselor would e-mail me when the results were in so that Greg and I could conference call her if we were both working and get the results together.

                                              16 weeks....just before our world started falling apart!!

At this point, I was 17 weeks. I had an anterior placenta on the right side of my uterus and was just barely starting to feel the little guy move. The following week at work, I was desperate for some coffee and mixed some regular into my typical decaf coffee. The extra caffeine must have really made him move! I was sitting with my 2 managers at work interviewing a potential new nurse. I must have looked like a crazy person because Little Man kept kicking low and left and it kept making me jump!! That was the first time I realllly felt him moving! Such an amazing feeling!!!

We were told the results from the amniocentesis would take 4 weeks!! The wait was excruciating!! At 19 weeks, a nurse from my regular's OB office called to tell me they had results (my amniocentesis had to be done with high risk OBs with Maternal-Fetal Medicine at a different office). They had amnio results!!! They told me he was a boy (I already knew that) and that results read that chromosome testing was normal and he was only a carrier of SMA and would not be affected!! OMG! I broke out in tears immediately!! Relief and absolute GLEE washed over me! I couldn't believe it! I quickly called Greg to tell him the news! I then immediately called my mom to tell her!!

About an hour later, I had come down from the high of the news when I realized.....there is no way those could have been the amnio results....it was too soon! I work at the same hospital where I had the test done so I looked in my chart  in the computer (it is legal to do!). There were recent testing results sent via fax to my OB's office. I took a close look and saw that my OB's office was in fact wrong. There were results back from the amniocentesis regarding chromosomal testing.  Everything from that was negative for any type of chromosomal anomaly like Down's Syndrome or any other trisomy disorders. The SMA carrier results were actually my own results. When I had the amniocentesis performed, they also took my blood so that they could make sure the cells from the amniotic fluid were from the baby and not my own cells. The SMA results were MY blood results showing again that I was a carrier of SMA. I quickly called back the OB's office and left a message as well as leaving a message with the genetic counselor telling her what I was told and what I found in my chart. I was 99% sure at this point that I was correct and the OB's office was mistaken. I was absolutely devastated.

The next morning the genetic counselor called me to confirm that the only amnio results were in fact the chromosomal tests and NOT the genetic tests. The nurse from my OB's office then called to apologize for reading the information correctly and giving me the wrong results. UGH! Back to waiting....

At this point, all we could do was keep busy. I dove into work and school. Greg and I were tentative about talking about any future plans that would involve a baby. As the weeks went on, we started to put our guard down. There was a 75% chance the baby would be okay. I mean, the odds were in our favor. We again started making plans and imagining the holidays with our November baby. I started looking at baby shower themes. I have always loved the story of Le Petit Prince (The Little Prince). There were so many cute party ideas on Pinterest! :)

In the mean time, the bump started growing. I hit 20 weeks on June 26th! That day I went to a nursing leadership retreat. Most of the people there were middle-aged women. My table was full of them! I was fully showing at this point and they loved the fact that I was pregnant! Each of them had lots of advice and were so kind to me! They told me I would love motherhood as it was such a special experience.

20 weeks is where life falls apart. I will stop here and get to the darkness next time.

1.5 Years Later.....Innocence Lost

I know I am so sporadic when posting in this blog. I actually forgot I had one. However, life has brought me the biggest hurdle I have ever gone through. I am frantically searching for ways to cope and wake up each day. Spoiler...this is not going to be a happy blog any longer full of blissful marriage life, cute dogs, and traveling.

I'm not sure if I am resuming blogging to find an outlet for my grief and sanity or to help others who find themselves in the devastating circumstance that I did.....or maybe for both.

Catch up: The past year and a half was mainly spent working, traveling, and starting a master's program. I am still working two jobs....inpatient pediatric nursing and legal nurse consulting. I started an online Master's program in Nursing Leadership and Administration in August 2014. Greg and I took trips to Venice and the Adriatic Coast (via a cruise down the coastline) in May/June 2014 and to Amsterdam, Brussels, and Luxembourg in April/May 2015. The biggest change of the year.....I am currently SUPPOSED to be 6 months pregnant.

Supposed to be. What a hellish ride my first pregnancy was. Greg and I started talking about being ready to start a family in the summer of 2014. I got my IUD removed in September of that year. However, being me...I initially freaked out a little and took oral birth control for the rest of the year. I focused on healthy eating and ramped up my workouts.  I turned 30 in December of that year. For some reason, that milestone made me feel officially ready to start trying to get pregnant.

Being the pessimist I can sometimes be, I thought it would take us at least 6 months to get pregnant. Ha! We actually got pregnant the first month trying in January, but lost that pregnancy to a chemical pregnancy (a very early miscarriage before most people even know they are pregnant). I was OK with the chemical pregnancy as I am pretty well educated in the fertility process and understand that MORE than 1 in 4 pregnancies will end up in some sort of miscarriage.

The very next month, February, I officially got pregnant.  Early pregnancy was quite easy for me. I felt almost guilty for how fast we fell pregnant and how little symptoms I had. I never had full blown morning sickness.....I would feel a little queazy with some indigestion if I didn't eat at least every 90 minutes but I never even threw up once. The biggest early pregnancy symptom I had was extreme fatigue. But, I never missed work and even kept up my workout schedule which I feel really helped keep all my symptoms at bay. I did feel like I started gaining weight quickly, but I also went on vacation to Amsterdam, Brussels, and Luxembourg between weeks 10 and 12. Since I couldn't drink....we ate a lot! For as slim as the Dutch are, they sure eat a lot of fried foods and cheese! :)

At 8 weeks we had our first ultrasound. The little nugget was there with a healthy heartbeat! We went in for our 12 week appointment just a few days after we got back from vacation. We brought my mom along for the scan to see the first pictures of the little nugget actually looking like a baby now instead of just a jelly bean. My OB offered first trimester prenatal genetic screening at that appointment. Neither Greg nor I had any family history of genetic diseases, but working as a pediatric nurse for the last 8 years I knew I didn't want to bring a child into the world with any known disease that would cause a lack of decent quality of life. I see too many children suffering every single day. I couldn't knowingly put my own child through that. Greg felt the exact same way. So we had the genetic testing done through a company called Progenity.

Two weeks later....the nurse emailed me to let me know the results were back. I called the office and asked her if she could wait to tell me the gender until Greg could conference call in with me (we were both at work that day).  She said no problem and then told me the baby results were OK chromosomally but my blood work indicated that I was a carrier of SMA or Spinal Muscular Atrophy. Later that day, Greg and I conferenced called the office and found out we were having a BOY! :)

SMA is recessive genetic disorder in which if someone has SMA they lack the gene that allows for proper firing of motor neurons responsible for muscle movement. Most babies affected with it appear normal at birth, but then start missing milestones like head control and sitting up. The disease is progressive and eventually babies lose the ability to breath. SMA has a 95% fatality rate. There are 4 types of SMA that are determined by severity. Most babies affected are type 1 and typically die between 6 months and 18 months of life.

Since I was a carrier of SMA (not affected by the disease but carried only 1 gene to pass along to my baby, not 2), Greg needed to get tested to make sure he was not a carrier. During this time, we found out that 1 in 40 people are carriers of SMA. During the 2 weeks it took to get Greg's results back, we were a little concerned but not too worried. What were the chances BOTH of us were carriers of this?!

(I just realize this got super long and I will stop here for now.)

Lazy Sunday

Ahhh! I finally have a Sunday off without any major plans!!! I'm still in my pajamas enjoying my 2nd cup of coffee.....bliss! :)

We made it through the nastiest winter weather this week! Whooo! Monday the temperature was -30 degrees with -45 degree windchills! I got my first adult "snow day" at my office job.....so exciting! At least, I was excited until the power went out!! Holy crap.....that was cold! The worst part was taking our dogs out 6 times that day......living in a condo we don't have a yard! It took forever just to bundle ourselves and the dogs up against the crazy temperatures....and then we would be out there for about 20 seconds! Luckily, the power came on after about 6 hours....just as it was getting dark and we were about to leave to seek out someone with lights and heat.

I figured today I would introduce my cute little hubby, Greg:

We met in college at the University of Illinois in Chicago. We lived on the same floor of campus housing. He was extremely persistent trying to get me to go out with him. He is 2 years younger than I am and he had a long-term girlfriend at the time. I told him I was not worth it and advised him NOT to leave his girlfriend for me. However, Mr. Stubborn did not listen to me and broke up with her over winter break of his freshman year (he was no longer happy in the relationship and they had very different views on the future.....so I wasn't a complete home-wreaker!) He persisted and I finally caved and went out on a date with him telling my roommate "It's just a date....it's not like I am going to marry him or anything!" Little did I know! We've been together ever since! We have been together for 8 years now, married almost 2! He is the most loyal and committed person I have ever met! He works for a PBM (pharmaceutical benefit management) company.....and I have no clue how to describe exactly what that is! All I can say is that he works extremely hard.....50-80 hours a week....and is that dedicated in every aspect of his life. I love him more than anything and can't wait to see what the future has in store for us!

2014 Goals

With the start of the new year, I have been planning out 2014 along with everyone else. I don't like to make "resolutions" because it sounds like set up for failure, but I do have a few goals.

1. Living for the present, not for the future.
I have a habit of planning out every little detail of life....a quirk that I know bothers my husband a little bit. In reflection, I think I miss out enjoying the day to day things because I am always thinking of the future.

2. Eating cleaner.
I want to try....again....to eat less processed food. I enjoy fresh fruits and produce so its not the actual food itself that is difficult, it is the convenience. Working 60 hours a week does not give me much prep time! On days I work at the hospital, I am out of the house for 15 hours....so I need breakfast, lunch, AND dinner packed! Not easy.....

3. Enjoying the outdoors this summer.
My parents are moving to the area this summer with my 4 and 3 year old brothers.  I am hoping they find a place with a great fenced in back yard (we currently live in a condo.....no yard) so we can sit outside with the kids and dogs running around and us drinking wine/beer! :-)

4. VACATION!!!!
Our yearly trips abroad make my year! Seriously.....it's what I work for! This year were are going to Amsterdam for a few days then going to Venice to board a cruise through the Adriatic.....it's going to be beautiful!!

5. Baby....maybe??? ;-)

Third Time's A Charm?

I'm back? Maybe? One of my resolutions is to try and resume blogging.....I guess we'll see how long it will last this time! My last post was 2.5 years ago....let's do a little update!

1. Greg and I got married!
We were married in a beautiful outdoor garden at Caesar's Palace in Las Vegas on March 17th, 2012. It was a windy, rainy 50 degree day in Vegas and sunny and 90 degrees in Chicago....go figure! We didn't know if my in-laws were even going to be there until the day before the ceremony. (I'll devote an entire post to them eventually.) My brothers in-law, who were also groomsmen, didn't stay for all of the pictures. All-in-all, it was a beautiful ceremony and was nice and small just as we wanted. I'll write an entire post of the experience soon.

2. European Honeymoon
We had the small wedding so we could splurge on the honeymoon....and I think we chose well. France and Italy are 2 of my favorite countries! We spent the first week of our honeymoon in Florence, Italy and the second in Paris, France. The architecture, the art, the wine, the food.....heaven!! I'll talk more about the trip and others later as traveling is probably my favorite life topic!

                                               Italian wine is so lovely!

                                          View of the Duomo from our hotel.

                                                 Freezing waiting for nightfall to view the Eiffel Tower's light show...worth it!

                                                                     LOVE me some French macarons!


3. Still obsessed with our dogs!
Lola and Finley are still the loves of our lives! We can't get enough of them!

4. My parents and little brothers are moving to the area!
No more 3 hour trips to Peoria just to go shopping with my mama! My step-father accepted a new position in Chicago so my family will be joining me in the 'burbs sometime this summer! SOOO excited!

5. I started a second job!
I am ambitious (crazy) and took another part-time job in addition to my full-time job at the hospital! I took a Legal Nurse Consultant coarse last spring and decided it was something I wanted to pursue. In the summer, I found a position being a Legal Nurse Consultant two days a week in the burbs....so that means I work 60 hours a week EVERY week! Let's see how long I can keep this up!

Dr. Finley, Surgeon

I know what my Silky terrier puppy would be if he were human and had opposable thumbs:

Introducing Dr Finley, MD.....Surgeon! He takes apart EVERY toy he owns. And not only takes them apart, he does it meticulously and with surgeon like precision!! This morning he diagnosed Green Guy with gangrene and decided the limb had to be amputated. Yep, I'm a proud dog mama.....we'd have a doctor in the family! lol! :)