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.