2014...here we go

2014 is here.

The year we will meet Elise. 

I'm supposed to be at work today, ringing in the New Year with the tiniest, and most special little arrivals in the hospital.  But I'm at home.

Last night was one of the most emotional and difficult nights I have ever experienced. 

"Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God." -Psalm 42.11

I'll start at the beginning.

Three days ago I had a big scare with Elise.  I woke up and ate breakfast.  She usually starts moving around and kicking as soon as the coffee hits.  She was still.  I tried everything to get her to move.  I drank lots of cold sugary drinks, I laid down to concentrate on her movements, I poked and prodded and tried to squish her, Matt talked to her.  Nothing would work.  Finally at 3 PM, she kicked once.  She was alive!

I have been terrified of her being stillborn ever since we found out the diagnosis.  I'm scared that she'll die and I won't even know.  I'm scared that I won't get to meet her and hold her and cuddle her while she is still with us...that I'll never get to experience her looking into my eyes.

Fast forward to yesterday.  I was working my second 12 hour shift.  I had been having frequent braxton hicks contractions all day that were regular, about 5 minutes apart, and uncomfortable but not painful.  I have had an "irritable uterus" for every pregnancy.  All that means is that I have a ton of contractions that do not dilate my cervix or cause true labor.  They're just annoying and exhausting.  So, I went about my day.  I tried to drink more water and rest when I could.  I took more snack breaks too because eating can sometimes help.  However, at about 6 PM my contractions got really painful.  Painful enough to stop me in my tracks.  I was having burning pain from the front of my stomach, wrapping around to the back.  I knew I likely wasn't in labor, but I began getting very concerned about how intense they were becoming.

At our doctor's appointment after finding out the T18 diagnosis, my doctor had asked us, "How important is it to you that your baby is born alive?"  I was shocked at the question.  It is very important!  What mother doesn't want her baby to be born alive?  How is that even a valid question?  So I said, "what?" and she repeated herself, "How important is it to you that your baby is born alive?"  She then explained that contractions and labor are often very stressful on the baby and that if we tried to have a vaginal delivery, our baby might not be born alive.  She said if it were really important to us, we should start considering a c-section.

So there I was at work.  I was having intense contractions and all I could think about was that doctor's voice, "How important is it to you that your baby is born alive?"  What if my contractions caused by my irritable uterus were too stressful for Elise?  She hadn't been moving much ever since Sunday.  Is she in distress?  Am I about to lose her?  I had already asked my doctor once to be put on maintenance medication to calm the contractions from my irritable uterus.  I was on it for one other pregnancy.  They denied me the medication, saying that my contractions weren't changing my cervix, and they didn't want me to take the medication because it can cause a fast heart rate, and I already have a chronically high heart rate.  But I thought...maybe they'll give it to me now that we know my baby girl has Trisomy 18 and a heart defect.  Maybe it could help keep her safe in my belly long enough for us to meet her.  My coworkers noticed that I wasn't doing well and had me sit down.  One of the nurses asked me how I was doing, and I completely lost it for the first time at work.  I was just so terrified that the strong contractions might be killing my baby.  I wasn't ready to say goodbye.

The next nurse that was coming in to take my assignment happened to come in early.  She took report so that I could leave right at shift change.  My coworkers have been so incredibly loving and supportive. 

Matt picked me up from work and drove me downtown to Labor and Delivery.  He went home to watch the kids.  I was a blubbering, crying mess as I was wheeled into triage.  The admitting nurse was very compassionate and found a doppler as quickly as possible to check Elise's heartbeat.  And there it was, at about 150 beats per minute.  I could finally breathe. 

The resident on for OB came in to talk to me.  She checked to make sure I wasn't dilated and then I spilled all of my concerns to her about my contractions and stillbirth and wanting to do whatever I could to meet Elise.  She said it was a valid concern and that she'd talk to the consultant on to see if we could discuss starting me on the medication to calm my contractions.  She said it was their job to help my husband and I get the chance to meet our baby alive. 

She left and came back with the consultant.  This particular doctor apparently also specializes in genetics.  She was not as compassionate.  And apparently did not feel it was her job at all to help us meet our baby alive. 

The consultant asked if I understood that babies with Trisomy 18 often die before birth, and many others die during labor.  I said yes, I understood, and wanted the medication for my contractions so that Elise had a better chance of surviving.  She said that braxton hicks contractions are healthy, and that no matter whether I had them or not, our baby was likely to die before or during labor.  She basically told me that she was not willing to risk my health at all for a baby that is going to die anyway.  She said that even if I were in active labor, she would not try to stop it because our baby is going to die.  She kept saying that she was going to die.  I wanted to scream inside.  Not every single baby with Trisomy 18 dies before or immediately after birth!  She did a bedside ultrasound to look at Elise.  They poked and poked and prodded, but Elise would barely move.  I think she wiggled a leg and that was it.  But she had a heartbeat.  The doctor did not seem optimistic.  She said that Elise looked, "ehhh...okay.  She's alive now."  But then she stressed that I need to prepare myself for her to die at any moment.  I was a mess.  I couldn't quit crying.  She thought I should stay home from work the next day due to my frequent contractions and wrote me a note for "preterm contractions."

Now, don't get me wrong.  I have seen this doctor before in clinic and really liked her.  But she is blunt and doesn't sugar coat things.  I honestly think that she was just trying to prepare me for what she thought was the most probable reality.  I think she was so caught up in statistics that she forgot that no matter what the situation, patients need to be able to keep the hope that they have.  There HAS to be room for hope in the midst of medicine, statistics, and numbers.  If there were no room for hope, then my job working with the smallest little fighters who overcome so many odds and statistics, would be unbearable.  I love my job, and I love that our doctors always make sure to leave room for hope.  This doctor last night felt that my hope was unrealistic and tried to take it away from me.  And I felt completely broken in the process.

I'm trying to pick myself back and up put myself together again, but I'm struggling.  I know that this too, will pass.  There will be many ups and downs along this journey with Elise, and this is a definite down. 

So I'll spend the rest of my day with my amazing, beautiful children and husband.  I'll take as many cuddles and kisses as I can get.  I will soak up every little bit of blessings that I can and try to talk my heart back into one piece again.

"...God is faithful, and he will not let you be tested beyond your strength, but with the testing he will also provide the way out so that you may be able to endure it." -1 Corinthians 10:13