Evelyn's Birth Story- The Long Version

*I realize some of these details mean nothing and seem silly, but I want to write every bit down as I remember my last day with Evie. So that's why it's called The Long Version. :)  

 Late on a Sunday night, January 18th, 2015, I was laying in bed, pretty restless, while my husband was getting some work done in the other room. I suddenly realized that the slight wet feeling was not in my imagination after all, but was real, as proven by the wet spot on the sheets (I know, gross way to start a story! Sorry. That's just the way the story goes.)

I gingerly got up, trying to stay calm, all the while knowing (but somehow pretending not to know) that my water had broken at 31 weeks as my LBWC friends had warned me would likely happen. I went into the office and got Liam's attention, and said calmly, "Don't freak out, but..." and of course I see the panic rise up in his eyes right away. "But... one of two things has happened. Either I wet the bed... or my water broke.... so I'm going to call the doctor now. Don't. Freak. Out." My hands were shaking, and I called my doctor's office. The on-call doctor, who had been flippant in my previous encounters with her, insisted that I leave right away for the hospital, so I knew it was serious.

I vividly remember standing in my bedroom, looking at Liam, and wondering what to take with me. The house was a mess- ironically, I had planned to spend the next day, Martin Luther King Day, cleaning the house, packing a hospital bag, and finishing up my interim lesson plans for school. I felt like my brain was trudging through mud. "Well... I guess I should wear... pants?" Liam agreed that pants were a good idea. I knew somewhere deep in my heart that this was THE trip to the hospital, and I had a vague recollection of all the hospital packing lists I had pinned, but I just couldn't wrap my head around it. So Liam (remarkably calm, although not without great effort) ushered me to the car with nothing more than the clothes I had on (which DID include pants) and several copies of the ultrasound report, which Dr. A very wisely suggested I bring with me to any emergency room visit.

  The 30 minute-or-so ride to the hospital was incredibly peaceful. We were on a normally very busy highway, but at around one in the morning, naturally it was empty. At some point we called both our parents, and told them we would update them as we learned more. We drove through the dark with no radio, holding hands and laughing, truly at peace and happy. It was incredible.

*I guess I should clarify that because of the nature of the birth defect, I knew ahead of time I would have a c-section. I also wasn't having any contractions, so that helped contribute to my peaceful state of mind.

 We went in through the emergency room entrance, as our doctor instructed, and told the women behind the desk that my water had broken. "Oh no!" she said. "You can't wait here. We'll take you to the OB wing." I thought it was funny that the ER nurses, who probably see severed limbs and gunshot wounds fairly routinely, were freaked out at the thought of someone giving birth in the waiting room.

  When I arrived at the OB wing and they started asking me the routine questions, I told the nurses right away that my baby was different, handed them my packet of information from Dr. A, and briefly explained a bit of my situation, and that Evelyn was diagnosed as incompatible with life (but not love! <3 ). They didn't do a very good job masking their shock and horror, but I pretended not to notice. Thank goodness Dr. A had thought to give me the ultrasound report. Having to fully explain to those nurses the extent of Evelyn's difficulties might have put me over the edge.

 They strapped monitors to me to check on Evelyn, and they had a hard time getting them to sit just right to hear her heartbeat. It was comforting to hear her little heart thumping along like nothing was wrong, but it stressed me out to wear the monitor. I was constantly waiting for her heart to stop. I was oddly relieved when they told me I could take the monitor off, and I could just trust that she was fine. At one point one of the nurses referred to me as "Mom." That was really cool to hear!

At this point, I was still riding the high of, "We finally get to hold our baby!" Liam and I were nervous, but still so happy. We can hear some woman down the hall in obvious pain, and I laughed and said "I'm glad I don't feel like that right now!" (Way worse physical pain was to come. C-sections are no joke.) Looking back, I have no clue why I was so carefree. I can only assume that it was the supernatural power of God to shield both of us from dwelling on the sad part of the story. I was fully aware that I was going to have to say goodbye to Evelyn, but at the same time, I was SO relieved that she had made it far enough to be born alive! Stillbirth was a real risk, so much so that I went to the doctor weekly to hear the heartbeat. My dream was to get to hold her alive, and it looked like it was really going to happen!

After many (uncomfortable) tests, they determined that my water really had broken, and that given the circumstances, the best course of action would be a c-section first thing in the morning. I agreed- I didn't want to put it off, and risk not meeting Evelyn alive. Thankfully, by divine intervention, all the doctors I were familiar with were able to be there for the birth. Dr. W (my high risk OB), the NICU doctor I had met, and the perinatal hospice nurse were all already scheduled that day. Dr. A didn't have privileges at that hospital and I knew she wouldn't be there, but I felt good knowing someone promised to keep her in the loop, and later she sent flowers. (Can I just say that I LOVED all my doctors? So many ladies in my position have had horrible experiences with their doctors. I loved every single one- even the pro-choice ones. They were so supportive, and treated Evelyn with such dignity).

Around 4 in the morning, they gave me a room, set Liam up with some sheets on the pull-out recliner, and told us to get some rest because they would be coming to wake me up at 6 (ha). Liam fell asleep immediately- husbands can sleep through anything! I, of course, lay awake staring at the ceiling in total disbelief.

*I haven't even gotten to the birth yet- do you see why this is called the long version?

At 6 AM, I was prepped for surgery that (of course) got pushed back. At some point I know my mom came in to see me, and I know my dad and sister and in-laws were there too, although I don't remember seeing them, so maybe they stayed in the waiting room? (Sorry, family. This is where it gets fuzzy.)

  I remember the anesthesiologist came to talk to me, and she had kind of an earth-mother vibe with huge glasses that reminded me of Professor Trelawney from Harry Potter. (Google it- it's worth it). Talking to her was interesting, because I could kind of sense that she thought I was a little looney for going through with this instead of ending my pregnancy earlier (when clearly, she was the looney one with the hilariously enormous glasses).

After she had dutifully listed all the worst-case scenarios (but really, the worst case was already real), they wheeled me down toward the operating room in a wheelchair, and Liam put on the blue scrubs. The nurses told us that they would take pictures for us, so we handed one of them his phone and I told them that I needed a picture of how cute he looked in his scrubs. I love that picture now- it's the "before" picture.

They let us pick out the music in the OR, so I told them to put on the "Classical Music for Studying" station on Pandora. It's my go-to happy place music.

They graciously let Liam stay and hold me still while they put the enormous needle in my back. I was shaking so badly now that the moment was here; the room seemed huge and full of scary lights and equipment and way, way too many people. I tried not to look at anyone or anything I didn't know, and just focused on Liam.

As I was laying on the table, and things were swirling around me, I was vaguely aware of the instrumental music in the background. It was a violin cover of something that seemed incredibly familiar... then one of the nurses hesitantly asks, "Is that... Nirvana?" It SO was. So, my dear Evie, when you talk to the other babies in heaven that were brought into the world to something lame and predictable, you can tell all the other kids that you were listening to an instrumental version of Smells Like Teen Spirit. Because I think you'd be rock and roll like that. <3

  After I had gotten the epidural, they pinched my skin to see if I was numb. My right side was, but my left side SUPER wasn't. They gave me another one, but I still wasn't numb quite as far up on my left side as my right. They decided that was as good as it was going to get without knocking me out (and I was NOT going to let that happen) so up went the blue curtain and things got started.

Laying on the table with my arms splayed out, I tried to be as patient as I could. I was aware that Liam was sitting to my right and squeezing my hand, and I could see the nurse anesthetist pop her head into my line of vision to ask if I was okay every few minutes, but other than that, I just tried to imagine the most peaceful thing I could to try to remove myself from the situation until Evelyn was born.

Eventually (I have no clue how long it took), Dr. W said, "You're going to feel some tugging here," and I knew that she was almost here.  She wasn't kidding about the tugging (that was not fun) and then someone said something that let me know Evelyn was here in the world. They took her over to a table away from me to check her out (as per my request- if there was anything they could do for her, I wanted it done!) and they waved Liam over immediately. She was silent. He looked at me to see if I was all right, and I told him to "GO!" It was a flurry of people over there, so I had no clue what was going on. About that time, I was in a lot of pain, and felt incredibly hot and nauseous, but I was trying to ignore it to see what was going on with Evie. I don't know how much time had passed, but Liam eventually carried her over towards me, wrapped up in a sweet little blanket.

Now, I feel like I've done a pretty good job describing what has happened so far, but you're going to have to use your imagination for this next part because words cannot describe the amount of love in that room. My worst fear was that she wasn't alive, but I don't remember if I actually asked the question or not. Liam lowered her down near my head, and I could see that she was so, so little, and straining to open her eyes just a crack, and she was ALIVE and absolutely the most beautiful thing I had ever seen.

It took a long time for them to finish up on the other side of the blue curtain, but when they put me on the stretcher to wheel me into recovery and placed her into my arms, I remember feeling so proud. Like, someone is letting me hold this sweet thing?? Are you sure you trust me with her?? I was beaming at everyone in the hallway. I was holding the greatest physical treasure on Earth.

She weighed 2.5 lbs and was 11 1/2 inches long, just an itty bitty little girl. She arrived with beautiful red hair and looked so peaceful for the entire hour and a half she was alive. The pictures we have from that time are the most treasured things I own.

The days and months that followed were more dark than I ever could have imagined or could describe, but thank you, Jesus, that her birth is completely unadulterated joy in my mind. I cannot imagine having to endure the pain of losing her without the joy of her birthday to balance it out, and I know that our reunion in heaven is going to be far better.

More Pictures and Doctor's Appointment Anxiety

     I talked a little before about how we were able to get maternity pictures done just before Christmas, and our photographer has posted a few more pictures, so I wanted to share them here! I love how they turned out.

    It's funny looking at these now, because even though this was only a few weeks ago, I already feel about twenty times bigger! I'm 29 1/2 weeks now, and Evie is making herself known! She moves a lot. 

     I have an appointment with the high risk doctor and a NICU doctor next week, and I'm really nervous about what they will say and what we will see on the ultrasound. Our plan is to do absolutely everything we can to give Evelyn a chance to live, even though this is a fatal diagnosis. Just last week, one of my online support group friends had a miracle baby with LBWC, and he is still alive and fighting!! It's amazing. I want that so badly, but I know that even if our babies have the same symptoms, I may not get the same ending. It's scary, but just knowing that it's possible has given me so much hope. It's tricky trying to be realistic and aware of the most likely scenario, while still holding on for a miracle. It definitely makes for a roller coaster of emotions. 

     At this next ultrasound, we will learn a lot more about her lungs and diaphragm, and what we can expect after she is born. A lot of LBWC babies are born with a misplaced or missing diaphragm, and if that is the case with Evie, there won't be anything that we can do for her. That's a scary thought, but I'm just holding on to the knowledge that God already has a plan for us and our baby. 

Happy New Year: 2015 Scares the Crap Out of Me

     It's New Year's Eve, and my Facebook news feed is filled with optimistic people excited about the upcoming year and reflecting on the past, so I might as well join the party.

Here's some of the things that I have to celebrate about 2014:

• Finished my first full year of teaching! That was a big deal. 
• In June, we bought our first house! More of a cottage, really, but it's all ours. 
• My husband and I tore out the 1960 kitchen- no lie, had NOT been touched since 1960- with our own two hands and put a lot of love and sweat and tears (mostly mine) into it. It's far from prefect, but I love that we did it ourselves. It was far from the relationship nightmare you hear about. It was actually kind of romantic! I have the best husband ever. 
• In August, we found out we were pregnant- BIG surprise! But we were so, so, so happy. I think we spent a week straight just staring at each other and laughing at how happy we were. 
• In October, we got the scary news about Evie's diagnosis; first her omphalocele, then her limb-body wall complex. We spent the rest of the year up until now kind of wading our way through that. 

     In January we have another doctor's appointment with the OB and the NICU doctor, and it's going to be a big one. We'll find out if Evie has a diaphragm,  and what her lung function might be like after she's born. Plus they'll probably schedule my c-section. Which is terrifying. 

     2015 is forever going to be about Evie, no matter what else happens that year. It will be all about the day she's born, the day she goes to heaven, and how to learn how to breathe again without her. The closer I get, the more I feel like I'm standing on the edge of a cliff and someone's about to push me over. I'm trying to dig in my heels to keep it from happening, but there's nothing I can do; this little girl is going to be born at some point, and she won't be safe in my womb anymore. What happens to her and how long she lives will be totally out of my hands. 

     The past week or two, thinking about this has caused some near panic-attack moments. I'm trying to control and hold onto something that I can't, and I'm so afraid that the very fragile peace I've felt from Jesus these past few months will go away the second Evie isn't with me. I'm so scared I'm going to spiral into this deep depression and not be able to fight my way out. 

     Then I was talking to a friend who has gone through a similar situation with her pregnancy, and she told me about how before her daughter was born, she had so many people praying over her and the baby, and she felt this incredible peace as she was taken into the OR. As I thought about that later, I've realized I have been thinking about this the wrong way. So far Jesus has given me just enough strength for that day, every day without fail. Of course my Jesus is going to be there for me. I don't have that strength now, but he'll give it to me then when I need it. This year is going to be all about how Jesus gives me strength when I have none. 

     Philippians 4:13 says "I can do all things through Christ who strengthens me." This verse is usually on the wall of a locker room or T-shirt talking about how to be a great Christian athlete, which is so stupid.  That's not what that verse is about at all. In the verse just before that, Paul was talking about how he was in dire circumstances and brought low, and his friends and family in Christ came and helped him. "Doing all things" doesn't mean hitting a home run for Jesus, it means that whatever circumstances you are in, good or bad or terrible or terrifying, you can go through it because Jesus gives you strength. I don't have that strength right now, but I have faith that Jesus will give it to me when the time comes. 

     This song is so incredible for me right now. The God of angel armies is always by my side. 

Maternity Pictures- Celebrating Evelyn

We had our maternity photo shoot yesterday! This is our first preview shot. Our photographer was wonderful- you can look at her website here! It was so neat to feel like a normal pregnant mom for a little while. It was really important to us to make sure we celebrate every day we have with little Evie, and our pictures yesterday really helped us to do that.

Liam was quite a trooper. He hates having his picture taken and anything even remotely "pinterest-y," but he didn't complain once, and we had a really great time. My favorites are the ones where he is in it with me. I can't wait to see the rest!

Death Has Lost Its Sting

My God, how many are my fears
How fast my foes increase
Conspiring my eternal death
They break my fleeting peace

The lying tempter would persuade
My heart to doubt your aid
And all my swelling sins appear
Much greater than your grace

Arise, O Lord, fulfill your grace
While I your glory sing
My God has broke the serpent's teeth
And death has lost its sting

But you my glory and my strength
Will on my tempter tread
Will silence all my threatening guilt
And raise my drooping head

And though the hosts of death and hell
All armed against me stand
No more will terrors shake my soul;
Secure within your hand.

On Joy

     All the good things in our life are so fragile.

     I've been thinking about the cruel irony that we didn't ask for this baby, then we fell completely and head over heels in love, and sometime soon we will have to say goodbye. How unfair is that? Oh, Jesus; how could our good, great, wonderful Jesus give us this great gift and cruelly rip her away?

     But really, do we deserve any of this? God gave us a beautiful baby. We didn't earn her. I didn't rack up enough points to finally earn a healthy baby. How many points do you need for that? Because whatever you have to do, I want to do it. But it doesn't work that way. God gives us free gifts, and he sometimes takes them away just as freely.

     God is good. Really, really good. Deep in my heart I know that; I can't deny his goodness at all. But JESUS, this does NOT feel good. This hurts. And I know- I really do-that everything happens for a reason. That all things work together for good for those who love God. That trials are here to test our faith, to produce perseverance, to draw us closer and closer to God and that we should "consider it pure joy."

     But guys, I'd be lying if I said I was feeling the joy right now. And I don't anticipate ever, ever feeling joy in this until I am in heaven and God has perfected me and I'm finally holy. I know that God has a reason for making Evie this way, but to be honest, I don't care what it is. If Evie's death saved the life and soul of every person on the planet, it still wouldn't be a good enough reason for me, because that is my baby. I would never choose to let my baby go, but God is going to. And I guess that's why God is God and I'm not allowed to make the decisions. I have to blindly and desperately trust that God knows better than I do.

     My joy is an intellectual joy. I have joy knowing that Jesus loves the little children, and that he loves Evelyn even more than I do and will be the first one to hold her in heaven (that is, if my sweet grandmas don't beat him to her). I have joy knowing that God has a purpose and a plan, and that his ways are bigger and better than my ways. I have joy knowing that I'll get to meet my little girl in heaven, and she will be whole and happy and never want for anything at all.

     It doesn't make it hurt any less, but somehow, it does. It hurts so badly now, and it will hurt even worse later when my baby is really gone, but it's good to know that one day, it won't hurt at all. One day, this intellectual joy will turn into real joy when I have the perspective of heaven and see God's face, and I won't have to trust blindly anymore.

Life

     When we first learned that we were having a baby, we had an insanely long list of names that we loved. It seemed like every day we had a new favorite. We picked names mostly based on how they sounded. Like everyone else having babies right now, we wanted one that was unique, but not weird.

     After we learned that our little girl had limb body wall complex, we decided that the name needed to be more meaningful. We took our top choices and looked carefully at the meanings, and one jumped right out at us. Evelyn. Life.

     When our doctor gave us our baby's diagnosis, she very gently told us that since babies do not survive with this disorder, terminating the pregnancy was an option we may want to consider. Before we even knew that we would ever have to make that sort of hard decision, we had already discussed what we would do if something like that was presented to us. We told her that absolutely was not something we wanted. There was no way we were ending our baby's life.

     For us, choosing life was an obvious choice, but it still didn't make it easy. I remember the days following "the" doctor's appointment thinking to myself, "I get why people end it. They're scared." I was scared. I am scared. Choosing life means we will have to watch and feel our baby grow and feel this incredible, beautiful gift that God has given us, and then give her right back. The thought of what God is going to ask us to experience in the next few months is enough to knock me down some days.

     But the joy of her little life outweighs the fear. Today I was going through a normal day at my job as a first grade teacher, reading with one of my students, and I could put my hand on my tummy and feel little Evie moving as though nothing was wrong. I get moments like that every day. I go to the doctor weekly to check on her heartbeat, and every time it blows me away. What would I do without those moments?

     God knit our little girl together in my womb, even with her physical defects. She is here, every day, for a reason. It could end tomorrow, or the next day, or a month from now, or hours after she is born, but she's here now. Who are we to end what God has put in motion? How could we miss out on the good things that he's going to give us through our baby, simply because we're scared?

     So our little Evelyn, our little life, is still with us. As long as she is, we're going to celebrate life.