Day 3 and Following

The Wednesday after we found out Ayden was Anencephalic, we had our follow-up appointment with Dr. Calvert.  We had written down many questions we wanted to ask, most of which I don’t even remember at this point.  When Dr. Calvert came into the room, we let her know that we were going to go full term, and she responded with nothing but support.  Never again did she offer any alternative options, which we were very grateful for.  She again briefly walked us through what the pregnancy would look like from then on – just like any other pregnancy.  Same tests, same number of appointments, the only difference would be we would only be working with her and one other nurse, instead of a large staff.  This would make it easier on us, not having to explain our situation over and over again.  She was very kind, as she answered our questions.  We had done quite a bit of our own research at this point, but wanted to hear the real numbers from her, as we had read varying statistics about chances of surviving birth, how long she might live after birth, chances of making it full term, etc.  The numbers she gave us were much more severe than we had anticipated.  We had read that there was a 35-55% chance of still birth.  Dr. Calvert told us Ayden has a 75% chance of being stillborn.  There really aren’t any statistics on chances of making it full term rather than going into labor early.  There isn’t really any way to guess how long she might live if she survives birth.  A C-section does not provide any greater likelihood of her being born alive.  Organ donation is not a viable option, because there are too many gray areas, ethically speaking, regarding when anencephalic babies are pronounced brain dead, in comparison to when their heart stops beating, and the organs will likely fail before her heart stops beating, making the organs no longer viable for donation. 

The information from Dr. Calvert was necessary, but not easy to hear.  After our appointment we went to my older sister’s house and told her about the appointment.  She is an RN at St. Pete’s in Olympia, in the OR.  She has worked on multiple occasions with the teams responsible for organ harvesting, so she offered to talk to the reps and find out of there was any additional information regarding organ donation with anencephalic babies.  We later found out that though the organs are not considered viable for donation, if Ayden is born alive, she will be able to donate her heart valves, which are in very high demand, and very hard to get ahold of.  So many babies need heart valve transplants.  My sister is going to put us in touch with a rep from the company at St. Pete’s, who we will be able to work with, so in the event that Ayden is born alive, after she goes to meet Jesus, another baby will be able to receive her heart valves.  There is a small glimmer of redemption, knowing that just maybe, another set of parents will not have to go through what we are going through, because of Ayden’s short time here with us.  Obviously, there is still a high chance this won’t be an option, if she is stillborn, but it is obviously our prayer that we will get to hold our baby girl while she is alive, and that she can spare someone from losing their precious baby.

Two years ago, Nathan and I had decided to start the tradition of buying each other a children’s book for Christmas.  We both love children’s books, and this became just a fun thing to do.  The first year, Nathan bought me Peter Rabbit, and this year, he bought How the Grinch Stole Christmas, and The Wind in the Willows.  I had never read The Wind in the Willows, much to Nathan’s dismay, as it was one of his favorite stories.  When we got home from my sister’s house that evening, I grabbed The Wind in the Willows off of the book shelf as we made our way to bed.  Nathan saw the book sitting on our bed, and asked me if I wanted him to read it to us.  I felt horrible asking him to (I don’t know why), but I said I’d love it if he was willing to.  Of course, he obliged, and for the first time since we had found out about Ayden, I fell asleep and slept the entire night through.  Since that night, Nathan has continued to read to us almost every night.  We’ve read through the entire book almost twice now, and I still have no idea what most of the books is about, because listening to it puts me right to sleep.  Nathan is getting better and better at the voices of all the characters, becoming more and more animated each time.  The first time we finished the book, was our last night in Iceland.  I’m sure Ayden would appreciate a different book soon…she is probably irritated with her momma for falling asleep and missing so much of the story. 

Being able to sleep brought mixed emotions.  It brought great relief to Nathan.  It in a way brought significant relief to me as well, however there was also a large part of me that felt guilty for sleeping.  It was like I was already moving on, moving forward, and I wasn’t ready to do that.  I know it is absurd to feel guilty about getting sleep in the midst of circumstances such as this, but the guilt was there nonetheless.  It was like somehow I was betraying Ayden, by being able to sleep.  I know this isn’t the case, but the mind does some really dumb things during really painful times.

I don’t fully remember the days that followed.  I remember going on a lot of walks with Nathan.  I remember sitting on the couch with Nathan watching funny cat videos, and laughing a lot.  I’m not really sure why we chose cat videos, but we knew we needed to start laughing, and it did the trick.  I remember writing a letter to my coworkers explaining the news about Ayden, and asking my boss to email it out to everyone.  The letter went out at 7:30am on Friday morning, and I received many texts and Facebook messages from coworkers, letting us know they loved us and were praying for us.  I remember crying every time I got a text or Facebook message.  I remember one person called and left a message, seeing if we were okay, and if there was anything they could do.  It takes a lot for someone to call, not simply text.  It meant a lot.  I remember not having to cook because so many people had brought us food (thank you!).  I remember thinking it was very strange, how fast time was passing, and how time should just be standing still so I could wrap my mind around what was happening.  But time doesn't stand still…life keeps happening, the world keeps spinning, and nothing slows down.  It’s a very strange sensation.  Your world has come to a crashing halt, but everything around you keeps spinning.  It’s not a good sensation.  I remember keeping the house very clean.  Nathan and I found comfort in meaningless tasks, like cleaning the kitchen and sweeping the floors.  It gave us something to do, and helped us keep moving.  I remember crying a lot.  There were many times when I would be having an uncontrollable meltdown, and Nathan would wrap me in his arms, hold me, and just start praying.  I remember this being the only thing that could calm me down in those moments.  These times don’t happen as often as they did during the first few weeks, but they still happen.  And Nathan still holds me, and prays.

We had made the decision to do all thing things we were looking forward to doing with her after she was born, while we still had her with us.  We didn’t want to miss out on a single moment with her.  The first thing we decided to do with her was bake morning rolls.  When Nathan and I were first married, we lived in Seattle and discovered this amazing bakery, Macrina Bakery, and Nathan’s favorite pastries were their morning rolls.  I have two cookbooks from Macrina Bakery, and had made these a few times for Nathan in the past.  They take three days to make.  It’s a very intense process, is very time consuming, and only makes 12 rolls (for real?  Three days, and only 12 rolls?  I feel like that is just cruel).  Now, these rolls are like sweet croissants rolled like a cinnamon roll but with a vanilla sugar filling.  They are the flakiest, most delicious things on the planet.  Somewhere in the process of making these, you have to refrigerate the dough, let it sit on the counter for half an hour, roll it a specific way, refrigerate, let it sit, roll it out, repeat.  Of course, we ended up doing this late at night, so we set alarms to wake us up to go complete each step.  This resulted in me setting alarms, falling asleep, walking up, and telling Nathan want to do while I stood there half asleep, then falling asleep again, repeat.  Something about this process was beautiful, and terrifying and painful.  It felt special to be intentionally doing something with Ayden, yet was a horrific reminder that we would never do this with her after she was born.  It was therapeutic, and simultaneously horrifically painful.  We contemplated not sharing them with anyone once they were done, but decided Ayden probably would have been the type of person who would have wanted to make a party out of it.  We invited our friends Blake and Sam over the morning they were done, and shared them together.  It was fun, it was symbolic, and it was just really hard.  Many things from then on were similar in that regard; fun, symbolic, and just really hard.

Despite the fact that the first week after finding out about our baby girl was the hardest week of our entire lives up to that point, we never got angry.  We never entered into the “why is this happening to us?” stage.  We never turned to hatred.  I am very grateful that we never turned to those things.  It would have been much easier in the moment to just shut down, and refuse to accept our circumstances, to blame God, to be angry, and to shut everyone out.  I’m so grateful we didn’t do that.  I’m so grateful that we clung to God, and to each other during that time (and continued to do so from then onward).  I’m so grateful for the friends and family that surrounded us, were there for us, and for the many, many prayers that went out on our behalf.  We’ve come to find out there are literally thousands of people across the entire United States who are praying for myself, Nathan, and Ayden.  The love was instantly overwhelming, and only continued to become more overwhelming as time went on.  For this, we are very, very grateful.  And friends, being grateful in times like this is hard; but it is so much better than being angry.

The Day After

The first night after hearing the devastating news about our baby girl was horrific.  How do you quiet your mind enough to sleep after hearing what we had heard that day?  I had unfortunately gotten into a habit of watching a TV show as I fall asleep every night.  I tried to do that, hoping having something to listen to would keep my thoughts occupied.  What it really did was make me incredibly frustrated at the meaninglessness of Netflix and every show it offers.  How could I waste so much time watching it?  Why were all of the shows so meaningless?  So many things in life suddenly became meaningless.  And it didn't prevent me from hearing those horrible words, over, and over, and over, and over.

"I have some really bad news about your baby girl."

It's all I could hear.  I just kept replaying what the doctor said to us, over and over.  I gave up watching a show and laid in bed, still hearing the same words over and over.  Then I was hungry.  I continued to lay in bed for a while, trying to will the hunger away, but eventually got out of bed and heated up some pizza left over from that night.  I was trying to be as quiet as possible, but eventually Nathan wandered out of the bedroom, to find me at the table, eating pizza, with tears streaming down my face.  He held me, sat with me, and eventually we both went back to bed.  At some point I did fall asleep for a few hours, but was wide awake at an ungodly hour of the morning, and I just accepted the fact that sleep was no longer attainable at that point.  When Nathan woke up that morning, he found me sitting upright in bed, reading about Anencephaly, with tears running down my face (at least this time I wasn't eating pizza?).  He gently suggested I read it another time, and pulled me close to him.

Nathan and I took the week off of work, in attempt to further process the news, and try to get a handle on the new turn our lives had taken.  We went to the gym, and walked around the track that surrounds the basketball court the morning .  It was nice to be moving, and it got us talking.  We talked mostly about Ayden, what the upcoming months were going to look like, how we were feeling, questions we should ask at our upcoming appointment.  Neither of us were angry.  We were both hurting more than we'd ever hurt before.  We were confused.  But we were talking.  That walk started the first of many trips to the gym where we would walk, and talk about Ayden.  It became a source of comfort, a way to process, and a way to intentionally keep us talking to each other, to keep us connected. 

During that walk, I timidly brought up organ donation, asking what he thought of it.  He had been thinking about organ donation as well, he just hadn't wanted to bring it up because he wasn't sure how I would react to it.  We had both been reading about it.  Remember that prayer I said, on our drive to the beach, begging God for Nathan and I to be on the same page throughout every decision?  This would be the first of many decisions, where Nathan and I were on exactly the same page.  We decided if organ donation was a possibility, we wanted to pursue it.  If there was any chance our baby girl's inevitable fate would be able to prevent other parents from having to go through what we were going through, we were on board.  It felt like a glimpse of redemption for our horrific situation.  Though we were both on board, even just talking about it was agonizing.  It just isn't a conversation that any expecting parents should ever have to have.  It isn't something anyone wants to think about.  It isn't something anyone should every have to think about.  It is something that simply should not be.  And yet it is.  And there we were, having that conversation.

Nathan's mom came and visited us that afternoon for a few hours.  It was nice to talk.  My brother and his wife (who are expecting a little boy, due two weeks before Ayden) came over, as did our friends Blake and Sam.  I had kept it together most of the afternoon while Nathan's mom was over, but when Sam walked in the door, she ruined that for me.  She gave me a hug, the kind that communicates more than you can really say with words.  She told me that she was so sorry, and she grabbed my face in her hands, looked me straight in the eyes, and said, "you know I'm here for you, right?"  It has been interesting how different people handled the news about our little Ayden, especially in person.  The most common reaction has been for people to give us "the look" - you know, the sad face, the head tilt, the "I don't know what to say, so I'm going to look at you like this" look.  Other people pretend nothing has happened, and try to keep things as normal as possible.  I don't think there is a right or wrong way to react...I didn't know how I wanted to people to act around me.  I guess I just wanted people to just be normal, and be real.  Sam was real.  Sam cut straight to the chase.  Sam knew I was in agony, and she wasn't going to ignore it.  She was going to be in agony with me, and make sure I knew she was there.  I still tear up every time I think about that moment, how much it meant to me, and how simultaneously painful it was, because it forced me to also recognize my own pain.  It's easier to ignore the facts of life, than to hold their face in your hands and stare them straight in the eye. 

After everyone left, it was time to attempt sleep again.  And again, sleep evaded me.  I just kept hearing those words, over and over and over.

"I have some really bad news about your baby girl."

Again, I eventually wandered out into the kitchen to find food.  I heated up some of the soup Emily had made the night before.  Nathan found me again in the kitchen, eating, with tears running down my face.  I again eventually fell asleep, but only for a few hours.  When Nathan woke up the next morning, he again found me reading stories about parents who had children with Anencephaly with more tears running down my face, and he again gently suggested I read it another time, and he again pulled me very close. 

January 4th, 2016

Nathan and I had been counting down the days to our appointment, inexplicably excited to find out if we would be having a little boy or girl.  I scheduled the appointment for first thing on Monday morning, 7:45am.  During our ultrasound, we saw the beating heart of our child, moving arms and legs, two perfect kidneys, a stomach - it was equally beautiful and exciting.  The ultrasound tech was explaining everything on the screen, and all of the sudden "it's a girl!" appeared on the screen.  Our baby was a girl - little Ayden Nicole.  We had had names picked out for several months already.  A little tear slid down my cheek as I realized I was having a daughter.  Nathan's hand tightened around mind, and both of us were excited beyond belief.  I really can't even explain how much joy we had as we left the ultrasound with a string of pictures.  We had a follow-up appointment shortly after the ultrasound, and we sat in the waiting room texting all of our friends and family to let them know we were having a baby girl.  We sat there for an hour and a half, not even bothered by the long wait, planning all the things we would do with our daughter when she was born.  We sat there loving every response from family and friends - our sister in law had just found out she was having a boy.  The thought of a little girl and a little boy running around at family functions was just too exciting to even handle.  So much joy.

Eventually we got called for our appointment, where we sat and waiting for a little while longer in the tiny exam room.  We were officially running late for a small breakfast get together with Nathan's family, where everyone was waiting to hear if we were having a boy or a girl.  Dr. Calvert eventually entered the room, followed by one of the midwives.  As she walked in, she said "so you found out you are having a girl?"  We responded excitedly, not at all expecting the words that were about to come out of her mouth.  "I'm afraid I have some really bad news about your baby girl."  Nathan was instantly standing by my side, arms wrapped around me, as Dr. Calvert proceeded to tell us our baby's brain and skull had not formed.  I just remember absolute confusion.  I had just seen her on the screen.  Her heart was beating, her arms were moving.  I had seen her little face.  She was alive and well.  I didn't understand that something could be wrong with my precious daughter.  Dr. Calvert went on to explain that the neural tube defect was not compatible with life.  This confused me even more.  Her heart was beating.  I'd just seen it.  I remember asking what this meant from here on out, and she explained that the baby would likely make it full term if that is the option we chose.  She laid out three options for us - going full term, inducing labor now, or going to Seattle for a surgery that I wanted to hear nothing about.  She and the midwife gave us a few moments alone, how long, I have no idea.  I just remember sobbing into Nathan until we heard a knock on the door and they came back in.  They asked if we had any questions.  I couldn't speak, let alone think of what to ask. They offered to show us pictures of Anencephalic babies, so we could understand the circumstances a little better.  They warned us they were fairly graphic, but we decided we wanted to see what was happening to our daughter.  The pictures were graphic.  Trying to wrap my mind around the thought of our little girl being anything but perfect was impossible.  Dr. Calvert was very kind as she explained as much as she could, and suggested coming back in a few days when we had time to process things a little more.  She scheduled an appointment for two days later, during a time she normally wouldn't see patients, but would make an exception for us.  Because she scheduled the appointment for us right there, we didn't have to stop at the front desk on our way out, and were able to escape out a side door and go directly to our car without having to see anyone.  We sat in the car and sobbed.  How can you go from the happiest moment in your life, to the most devastating moment of your life, in a matter of seconds?  How do you start to process the fact that your child isn't going to survive? 

Even as I'm writing this, one month after we found out the news, I can feel Ayden stirring inside me.  She has been kicking more today than I've ever felt her kick.  Nathan put his head on my belly, and could hear her heart beating. 

"I'm afraid I have some really bad news about your baby girl."

I still hear those words run through my head at least once an hour, without fail.  I still have a hard time understanding what they mean.  I'm still going to carry her to term, I'm still going to give birth.  I'm just not going to be able to raise my baby girl like I had been dreaming I would. 

It's really impossible to describe the pain of losing a child.  To be honest, I still don't know what that pain is like, because we haven't lost her yet.  We still have her.  But the pain of knowing we are going to lose her is far greater than anything I've ever experienced, could have imagined, or would ever wish on my greatest enemy.  How do you recover from this?

As Nathan and I sat in the car, after hearing the most devastating news of our life, we began to realize we were going to have to eventually leave the parking lot.  Nathan started driving, and pulled into a gas station.  He asked me if I wanted to go home, or go somewhere.  I told him I didn't want to go home.  He pumped the gas, got back in the car, and I suggested we drive to the beach.  He had been thinking the same thing.  We started driving towards Ocean Shores.  The drive was fairly silent.  We didn't know what to say.  I'd occasionally look out the window as tears streamed down my face, completely unable to even think.  I remember praying a lot.  I prayed that Nathan and I would see eye to eye on every decision.  I remember telling God I didn't understand, but that I trusted Him.  I remember not being angry, just hurting beyond belief, and confused.  At some point we texted Nathan's mom to let her know we couldn't make it to breakfast because of our news at our ultrasound.  Telling her made it more real, and made it more painful.  I cried on and off all the way to the beach.  I just remember Nathan telling me, "you just have to keep talking to me, okay?"  He didn't mean right at that moment.  He meant through everything we were going to have to go through from that moment on.  I needed to keep talking to him, to not shut him out.  I promised.

We parked at the beach in a place we could see the ocean.  It wasn't raining, but it was cold, and it was windy.  We sat in the car staring at the waves, and eventually got out and walked to the water.  We didn't stay out there for long.  It was very, very cold, the wind pierced every layer of clothing.  We walked quickly back to the car and continued to sit.  Nathan asked me if I had any thoughts of what I wanted to do, out of our three options with Ayden.  I tearfully explained that as long as she is alive and well, it is not my decision to decide when her heart stops beating.  As soon as I had heard the three options laid out by Dr. Calvert, I knew I would carry her as long as she would let me.  Not all anencephalic babies make it full term.  If Ayden made it full term, I would carry her full term.  To end her life would not be my decision.  That just isn't something I could ever live with.  Nathan said he would be with me 100%, with whatever I decided to do.  And that is what we decided - we would continue to take care of her as long as she was with us. 

Eventually we both started googling Anencephaly; we hadn't really heard much of what Dr. Calvert had said to us, and we knew nothing about it.  We hadn't even heard about it before we were told our daughter had it.  We assumed it was very, very rare.  It isn't. 

One in one thousand babies are anencephalic, 0.1%. 

Most anencephalic babies that survive delivery only live a few moments, to a few hours. 

Many parents choose not to continue the pregnancy.

The information was overwhelming, and much of it was coming from random places on the internet.  What could we believe?  What was true?  According to most sources, 35-55% of anencephalic babies don't survive delivery, but that is a huge range - what was the real number?

We realized we had to tell friends and family what was going on.  We had just told almost everyone we knew that we were having a baby girl - they all assumed everything was fine and that she was healthy, like all the other babies your friends have.  We typed up a text, explaining what we had found out, and began sending it out.  We cried every time we sent a text.  More real. More painful. 

The responses slowly started coming in.  My mom was heartbroken with us.  Our siblings were devastated for us.  Everyone said they would help in any way they could.  Everyone was praying for us, and for Ayden.  Every response brought more tears.  The love and care of everyone was very apparent.  No one knew what to do, and we didn't know what we wanted anyone to do.  Eventually, we started driving home.  We stopped in Olympia and got Herfy Burgers and ate them in the car.  Neither of us wanted to eat, but we knew we should.  I knew I still needed to eat for Ayden.  And if it took all I had in me, I would keep eating to keep her as happy and healthy as possible for as long as I possibly could. 

My siblings are amazing.  They all wanted to bring us food that night.  We didn't want to be around a lot of people, but we asked Nathan's brother Jordan and his wife Emily to come over, and my sister Shandeigh and her husband Jake.  Jake and Shandeigh brought pizza and Jordan and Emily brought home made chicken soup.  Shandeigh brought me flowers and a giant, pink fuzzy blanket with ridiculous hearts all over it.  Just the look on her face when she came through the door told me she was so devastated by what we had found out about her niece.  They share the same middle name, Nicole.  When we told her months before what names we had picked out, she cried when she heard Ayden Nicole.  We had joked that we were scared to tell her if we found out we were having a boy, because she was so excited about the prospect of a niece that shared her name.  And how she was getting a niece, and losing a niece at the same time.  Shandeigh and I went and sat on the couch and cried in each others arms for a significant amount of time.  My sister and I didn't always get along growing up.  Okay, we hated each other for a significant portion of our upbringing.  We still didn't always get along even as adults.  But when I found out I was pregnant, something changed.  And when we found out the horrible news about Ayden, something changed again.  I can't even describe it, really, but it was like she was feeling the devastation I was feeling, while being able to put aside her hurt and just be there for me.  It was a while before I would realize how significant this was, and how much I would need this throughout the time to come. 

I don't remember a lot else about that night.  Eventually everyone left, and it was just Nathan and I again.  My little sister Rebekah lives with us, but she was on a work trip in Alaska for the week, so we had the house to ourselves.  I remember Nathan and I sitting on the couch and crying after everyone left, and eventually we went to bed. 

That was the first of many sleepless nights.