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.