Mixed Emotions

Am I beginning to sound like a broken record? Mixed emotions have been a common theme throughout my posts since we received the news of Gracie's diagnosis. Nothing is black or white, including our emotions about all this. Perhaps the only pure emotion I feel is love for her. Everything else is gray and convoluted.

Today was no different. Since we never seem to have a dull moment around here, we ended up visiting the hospital again. That brutal headache that I was complaining of in my last post (last night) turned out to be accompanied by high blood pressure, which was sustained overnight and into the morning. We went in to L&D just like last time and got the same work-up. Of course my blood pressure was perfectly fine the entire time we were there - this time I didn't even have to lay on my left side. It was just normal. Which, of course, is wonderful news, but it made me feel kinda dumb for going in! I still had protein in my urine, but all of my other blood work came back normal again, so home we went. All's well that ends well, right?

It was certainly a relief to hear that I was ok, that she was still in there, and that she and I could go home and continue on living this intertwined life that is all we'll ever have together. No one was going to ask me to make a choice - not today. I had fallen asleep last night with tears in my eyes. The last thing I said out loud to Ben before falling asleep was "I don't want it to end this way" - "this way" meaning delivering early, while her heart is still beating, because I'm getting sick. On the way to the hospital today I prayed "Please, God, if this is her time... please just take her now. Don't make me decide. Please don't make me decide." Losing her early because my own health is deteriorating is my biggest fear in all of this, as I've mentioned on more than one occasion. When we were given this news and I was asked (repeatedly, by every health care professional we met that day) whether we had considered termination, it wasn't even a "discussion" or a "decision" - the answer was just no. We couldn't be the ones to choose to end her life then, and it doesn't feel any better now, even with the threat of "medical necessity" looming ahead. So like the weak human being I am, I often pray and ask God to spare me that burden. As strange and foreign and awful and ugly as it feels to ask God to take your own child, I do. I want Him to do it, because I don't want to live with having done it myself.

I feel pretty good this evening, physically, but these hospital trips (all two of them) are so emotionally draining. I notice the high blood pressure, start to worry. Re-check it over and over, hoping the high reading was just a one-time thing. When I realize that it's not going away, I call the OB's office, and I'm told to go to L&D. I call Ben at work and have him start heading home. Then my stomach promptly tightens into a firm knot as I pack. I pack clothes for myself and for my husband, toothbrushes, deoderant. Today I packed the white shirts that I recently decided I'd like for us to wear in pictures with her. I packed her little hats that my dear friend Lisa made to fit her especially tiny 21-week-sized head. I packed a framed 3D sono photo of her. I packed up our box of memory-making supplies from String of Pearls. I got on the computer and read over our birth & comfort care plan for her to ensure that the funeral home phone number was on there and that our wishes were up to date before printing a few copies for the hospital bag. I changed and dressed my son and packed up his things for day care, and wondered whether I should tell him to give Gracie a "hug" before we left him.

It's wonderful that we're home now this evening. I'm relieved and happy that we've "lived to fight another day". But having to repeatedly prepare myself and brace for the worst... it's tough. Not knowing when or where or how "the end" will happen... it's awful. Each time something like this happens and we're confronted with the reality that "this may be it", it sets me back again. I get myself together, feeling good, living the day-to-day, at peace with things, and then something happens that reminds me that this is real. It's really going to happen. Fortunately today turned out not to be the day, but someday "the day" will be upon us, and we will lose her. It's like having a dark tunnel at the end of the light, instead of a "light at the end of the tunnel". I can try to enjoy her, love her, remain upbeat, focus on the happy parts of being pregnant, but there's this cloud of pain looming in the not-too-distant future. I can't "get through" my grief because it isn't over, and I don't know when it will be over, and I keep being reminded of that cloud and just how real it is and just how dark and heavy with rain it will be when it arrives. You can try to set out your picnic and enjoy the sunshine while it lasts, but that dark cloud is always there, threatening. It's a tough place to be living.

That's where the mixed emotions weigh most heavily on me. There are moments, especially in situations like we found ourselves today, that I long for some relief. I find myself wishing that I could just pop that cloud and let it rain - just get it over with. Let the lightning strike and the thunder roll and the winds and hail rip me to shreds, so that I can know that it's over, and I can try to put myself back together again. As desperate as I am to cling to her little life, and as destroyed as I will feel when she is gone, and as intensely as I know I will wish for just one more day with her, I still sometimes wish that I didn't have to live in this limbo. As devastating as they are, I've had some time to come to grips with the "knowns" in this situation. Those realities hurt. But it's the "unknowns" that make it so frickin' hard to live out each day.

At the end of the day, I am so relieved to be pregnant tonight. I am so blessed by her every flutter in there, and I wouldn't trade it - not for anything. It's a trade-off that I have accepted. I get to keep her a little longer and love her a little more, but in exchange, I have to live with not knowing what is to come, or when. But accepting it doesn't mean that I don't occasionally stumble under the weight of it all and show my human weakness. So, here I am, weak but grateful. Just trying to keep my head on straight. Praying that God continues to shower me with a brand of grace and peace and strength that I never knew were possible, to keep me afloat as I wait for whatever lays ahead. I wait, and I pray, and I love her. It's all I can do.

Limping Along

Two days into this surgical rotation I'm already in desperate need of some sort of chiropractic adjustment, orthotic shoe inserts, and a week-long nap. I had forgotten how hard it is to be on your feet all day, especially while pregnant. I had a desk job the last time I was pregnant... that was nice. It doesn't help that my "good shoes" (my professional clogs) are officially too tight now that my feet have started to puff up. I also have a ROCKIN' headache right now, and I'm pretty sure that my right eyeball is about to pop out of its socket. #pregnancyproblems  *SIGH*

Then again, at least I'm still pregnant. At least my baby girl is still here :) Today was a relatively happy day... she gave me her first big "thump" from inside! I've been feeling her vaguely fluttering around in there for close to 2 weeks now, but today I got my first distinct "kick" (or punch, perhaps... tough to say!). Definitely made me smile :) It wasn't all that long ago that I was convinced that I didn't ever want to feel her move - that I was wishing for this to end before I ever got to make that connection. I remember specifically thinking about that, shortly after we found out about all of this. Once again, I'm feeling so very thankful that I've been able to move on from that place. I understand why I was there, but I'm so glad that I don't want to hide anymore.

As open and honest as I am with myself (and you all), I keep struggling with how much to tell people. I work with the same residents every day, but different attending surgeons. I can't read these people... how much is "over-sharing"? Part of me doesn't want to have to smile and lie, but part of me doesn't want to go into it. I never know what to say after people react. "Oh my gosh I'm so sorry" "...Yeah, it's hard..." Awkward silence. Sometimes I just want to wear a sign that says "My baby isn't going to make it" so that people won't congratulate me or ask about her or make any mention of the fact that I'm pregnant. And it's not because I don't want to remember that I'm pregnant... I think about her all day every day, and I'm happy to be thinking about her. I just don't like the awkward conversations, and constantly trying to decide how much to share. I really don't have a hard time sharing or talking about this stuff myself. It's just that I can sense the tension and discomfort in others when I'm telling them about it in person, and that's what makes it uncomfortable for me. I know that they're uncomfortable and they don't know what to say. I thought I'd be avoiding the subject because it would be too painful for me, but I'm realizing that I find myself avoiding the subject to spare others the awkwardness. Most of the time it's just easier to smile and pretend everything is fine.

Then again, sometimes I (selfishly) want people to understand just how tough I am. I want them to know what's going on inside of me, so that they get just how hard it is for me to be standing in front of them in that moment, present and participating and acting like I give a crap about anything else beyond the confines of my uterus. To be honest, most of the time it isn't as hard as I thought it would be, because being there is in itself a distraction that helps me to cope and to keep on moving. But in the difficult moments, when the reality of this situation is at the forefront of my mind and no amount of distraction seems to shake it, I want people to get it. I want some credit. It's dumb, but it's how I feel. I'm not just another med student plugging along, desperately trying to impress someone, working hard for that "A". I'm a mother, somewhere in the process of losing her unborn baby, grieving and hurting and clinging to her sanity, limping toward a finish line she can't see. I don't want special treatment or better grades or "slack". Sometimes I just want people to see me for what I am right now.

Plans and Comforts and Fears and Worries and... Random Thoughts

Can I just complain for a moment...?

Making funeral arrangements for your still-living child really sucks. I'm sitting here writing emails and making phone calls while she occasionally flutters around in my belly to remind me that she's still here. Maybe she's just offering a little "pat on the shoulder" from the inside... a little "it's okay, Mommy". I like to think so.

*SIGH*

It's a one step forward, two steps back kind of process. I try to work on these things when I'm in the right frame of mind (ie. NOT already sad and crying), but ultimately, the process of "working on these things" almost invariably puts me into a more somber frame of mind. How could it not? It has been much easier - almost... therapeutic? - to work on the remembrance stuff. Things I want to have for her, memories I'd like to capture, little gifts to bury her with. The funeral and burial stuff, though... not so much. I've been avoiding it like the plague. It has only been two weeks since this bomb was dropped on us, so I know that it's not all that bad that I'm just now gathering the strength to deal with it. At the same time, though, the reality is that we're fortunate that the worst hasn't happened yet and caught us off-guard. We really need to put these plans into place.

I had no idea where to start, of course. For one thing, you can't take out a life insurance policy on an unborn child, so where does the money come from? I had heard from other families that have dealt with infant loss and stillbirth that there are many funeral homes that offer their services at dramatically reduced costs in this kind of situation, but how does one find these places? Fortunately I was able to get in touch with the wonderful Maternal-Child Health Social Worker at the hospital where we'll be delivering (who also lost a baby to triploidy... can you believe it?!!!), who gave me a list of funeral homes that they've worked with in the past. I've gotten in contact with 5 of them so far, and the one that has provided me with pricing was quite generous, so I'm hopeful that this won't be quite as bad as we were anticipating.

Then there's the question of where. Being a young family and not exactly committed to the exact area in which we're currently living, I hesitate to bury her out here close to our current home. I also don't want to have to go too far to visit her. My family has several plots at a cemetery near where my parents live, about 45 minutes from us, which might be an option as well. I'm told that you can purchase space on top of an existing plot (of a family member) for a dramatically reduced cost, so we'll consider that as well. My grandmother lost her 9-month-old baby who is buried there, so it might be nice for Gracie to join her.

GAH... this is so bizarre to talk about, isn't it?!!!! I'm becoming somewhat desensitized to it all, but every now and then it hits me just how flippin' WEIRD it is to talk like this.

Anyway, then there's the question of what type of service to have. We're thinking of just doing something graveside. I like the idea of being outside, as opposed to being in a funeral home (with that funeral home smell and funeral home lighting and funeral home... atmosphere). We don't plan on having a viewing. I just don't want to make people feel obligated to face the raw reality of it all. We will invite our families to come and meet her in the hospital if they feel compelled, and we will certainly share photos with anyone who is interested, but I think that will be the extent of it. I also don't want to leave the hospital and spend the next few days knowing that I'll have to see her again (but this time all "done up" in post-mortem fashion). I just want to spend our time with her, say our goodbyes, and remember her in her natural state as she came to us. I need to start Googling around for music and readings and things we'd like to include as well, but I know for darn sure that that's going to be an emotional process, so I'm tabling it for the moment.

There's also the added complication that I'm about to begin a surgical rotation on Monday, meaning that my hours are about to get very long, my mornings very early, and my free time very sparse. Not great timing. And I can't take time off in small chunks - it's one month at a time from this point on - and I only have a maximum of 3 months to take if I want to graduate on time (and I desperately do!), so I'm trying to save that time for after the birth, and for residency interviews (late fall). The scheduling inflexibility is only one of a zillion reasons why medical school is frickin' hard, especially when you have children. But I digress.

Today we received a kit from a wonderful foundation called String of Pearls, which I've mentioned before. Free of charge, they provide this amazing memory kit to families facing the loss of a baby with a terminal diagnosis before or soon after birth.

It includes two books, a candle, a crocheted blanket, air-dry clay for making hand- and footprint impressions, a casting kit for making 3D plaster casts of hands or feet, a ceramic ornament with paint for making a hand- and/or footprint keepsake ornament, a creme for breast engorgement, and herbal tea for mom. It's so perfect for this kind of situation, and I never would have thought of all of these things on my own but am so glad that I'll have them on hand to make memories and keepsakes with her.

We also ordered a custom handstamped silver necklace for her on Etsy. I couldn't find anything that was exactly what we wanted, so I found a shop that had all of the elements we wanted (just in different necklaces) and asked them to piece it together into one necklace for us. The shop owner was incredibly sweet and accommodating and is expediting production so that we can have it ASAP.

I'm beginning to feel like we have our bases covered, and that we have all we'll need to take with us when the time comes. The funeral stuff is still in the works, but at least we're ready to head to the hospital with all of the things we wanted to have to help us savor and capture every memory we can make with our little girl. That in itself is a huge stress-reliever. I've been on-edge about it up until now, knowing that there were still pieces of this puzzle that we were working on, and that if we didn't get it all pieced together in time there would be missed opportunities. I'm feeling more at peace about the idea that we are going to have as positive an experience as possible, and are doing all we can to remember and celebrate our Gracie.

In obstetrical news, I had an appointment with my OB on Thursday which went just about as well as I could have hoped. My blood pressure was normal, and there was no protein in my urine! She did make it relatively clear to me that she does not intend - if I do develop preeclampsia - to wait around for it to "get bad" before intervening. I know that she's right... if I develop preeclampsia, I'm only going to get sicker and sicker. None of us want to end up in an emergency situation, and even worse, I don't want to end up getting so sick that I miss out on time with her. As many of you know our first birth was a rather horrific experience, and we certainly don't need a repeat, especially when our time with her after the birth will be limited.

While "intervening" is a very tricky subject for us, we have at least decided that we're not going to do anything risky with my health. Defining "risky" and drawing the line somewhere is also tricky, and as a "medical person" I probably have more confidence in my own opinions than I should, but I'm trying to remember that God put this OB in my life for a reason, that she knows exceedingly more than I do about these things, and that I need to trust her judgement (as I pray for God to guide her, and to guide us as well) if we are forced to make "the decision" at some point. My prayer is that Gracie will pass peacefully on her own and that the decision will never be in my hands. As much as I wish that we could hang onto her forever, I know that if she passes on her own, sooner rather than later, I will have the best chance at both remaining healthy AND not having to live with having made the decision to deliver her while her heart is still beating. While I hope that I won't carry too much guilt about that if it comes down to it, I fear that I will. I know that at the very least, it will add another layer to the complexity of our grief as we mourn this loss. There are also further risks associated with her reaching later gestational ages (mainly that I would require a C-section - having delivered my son via C-section - and that nontraditional techniques may be required that would put future healthy pregnancies at risk). My heart wants to hang onto her, to hope that she makes it close enough to term that she could survive outside the womb for a time so that we can share a few moments or hours with her, but my logical mind knows that that may not be what's best. Good thing I'm not the one who has to make that call... it's all up to Him.

Part of me also fears that she is suffering in there. I'd like to believe that my womb is a safe, warm place that is sustaining her life and providing comfort, but I have no way of knowing whether that's true. I know that she has nerves and pain receptors that are only growing more mature and sensitive every day. I know that she has several debilitating physical defects that we can see, and countless more functional defects that we cannot see. All I can do is trust God with her tiny body and pray that he spares her any undue suffering, but part of the way I'm dealing with the prospect of losing her soon is by reminding myself that while my heart is clinging to her, I can't bear the thought of her suffering in there for 4+ more months just so that I can have the comfort of meeting her while her heart is still beating.

It's a very complex situation with so many competing risks, facts, emotions and fears. I know I'm doing a terrible job of boiling it down for you - this post is such a hodgepodge of topics - but I think it's a fairly honest reflection of what it's like inside my brain these days... A jumble of thoughts and plans and fears and worries, and even some comforts and joys, but mostly just chaos if we're being honest!

Bringing the Realness

When you're first sucker-punched in the face with news like this, you bounce through a zillion different emotions. There's the classical denial ("surely we will wake up from this nightmare any moment now..."), anger ("What the [pardon-my-french] did we do to deserve this? How could God do this to us? Why the [bleepin' bleep] can't we just have a normal pregnancy? WHAT THE HELL?!!!!!"), and intense sadness. There is crying, yelling, dumbfounded silence.

You entertain so many thoughts that you have a hard time forgiving yourself for. Faced with the prospect of raising a child with intensive special needs, who will likely suffer a great deal for whatever time she has, part of you hopes for a terminal diagnosis. A big part of you. Faced with the prospect of remaining pregnant with a terminal baby, entertaining the well-meaning congratulations of strangers for weeks or perhaps months, completely unable to escape the reality of the situation even for a moment because she's inside your body, part of you prays that this will end sooner rather than later. And then you convulse with body-rocking sobs at the realization that you just hoped or prayed for your own baby to die. That's as real as it gets, folks. And I don't feel good about admitting it publicly, but the reality is that this thing takes you to some deep, dark places.

In my experience, your gut reaction is to push away - to keep the entire situation at arms' length. To try desperately to forget that you were ever excited for this baby, that you ever wanted her, that you ever loved her. If you can just treat this like "a pregnancy" rather than "a baby", be pragmatic about it, just live it out 'til it's over, you won't have to feel it. I'm quite sure that all of that is a natural self-defense mechanism, and thank God it only took me two or three days to move beyond that stage, but it was so real and raw and ugly.

I wasn't even sure that I wanted to name her. We had a girl name picked out weeks before the sonogram, but I couldn't bring myself to call her that. The situation had changed - she wasn't the little girl that I was going to raise, that I had imagined. It just didn't fit anymore. And I felt terrible about that - that I couldn't bring myself to use that name that we had loved and been excited for. We ultimately decided on a special name for her (or perhaps God decided). It came to me far more quickly and naturally than all the hemming and hawing and list-making we had gone through to come up with other names. Her name is Grace. It just is. No question in my mind now, but initially it was a major source of guilt for me.

Naming her was also a big step toward accepting this reality and accepting what she would be to us. Naming her meant letting her in - giving her an identity and a place in our hearts. Allowing ourselves to embrace her as our daughter. Let me tell you, that's no easy task. My "maternal instincts" did not make it any easier. Initially, there was almost nothing inside of me driving me to love her. Letting her in, embracing her, loving her... that's easy to do when you know that you will soon meet her, snuggle her, look into her eyes and see beautiful new life behind them, watch her grow, and spend a lifetime getting to know her. When all of that is ripped out from beneath you, you don't even know how to think about her anymore. When suddenly you are no longer anticipating any of that, and all you'll have is a (potentially rocky) pregnancy followed by a heartbreaking, soul-shattering delivery and a few hours to say goodbye to your already still child... all of the excitement and anticipation is replaced by grief and fear and sadness and worry. As it was I had never quite allowed myself to get all that excited about this pregnancy. I'd had weeks of spotting during my first trimester and had attributed my lack of enthusiasm to that, but maybe part of me just knew that something was wrong. I don't know. I had hoped that seeing a fully-formed baby that day, learning the sex and picking out a name would allow me to begin to bond and connect to this baby the way I remembered having done with my first. But when the news came and I was already less-than-attached, it was far too easy for me to turn and run in the opposite direction.

I praise God daily, sometimes hourly, for bringing me the kind of peace that He promises - the kind that "transcends all understanding" (and surely, it does) - which has allowed me to settle into this reality and return to my role as her mother. There is nothing I have loved more in this life than being a mother. It is my favorite thing about being alive. I wanted so desperately to be her mom, and initially I just felt that I was being robbed of that. But the past week has brought me to a new perspective. I feel more like her mommy now than at any point in this pregnancy, when initially I thought I wanted to run and hide. When initially all I wanted was for this to end, now I hope for more days with her, to reach more milestones, that she'll hang around long enough for Ben to feel her move in my belly. At first I just wanted this to end so that we could forget and move on, but now I spend my days coming up with ways to remember her, little things to make her "birthday" special, photo poses I want to capture after she's born. At first I didn't even want to name her, much less hold her, but now I'm having her name stitched onto blankets and stamped into jewelry, and sometimes quietly praying for a miracle - that perhaps against all the odds she'll be born alive, if only for a few moments, so that she'll feel our kisses on her cheeks at least once, and know on some level that we desperately love her.

I can't tell you how or why I've arrived at this place - I can only tell you that none of this has happened of my own strength or will or courage. It is beyond my human capacity. I'm just so thankful that the God we serve is such an awesome and powerful God. Overcoming this kind of devastation is no big deal for Him. He quickly and quietly picked up the pieces of my shattered heart, rearranged them, and left me with the new kind of "mother's heart" that I needed. Some days are better than others, but I have been so surprised at how easy it is already becoming to handle the reminders. I can smile and thank strangers and patients who congratulate me and wish me "good luck with the baby". I still feel a swell of joy when I listen to her heart beat with our fetal doppler, despite the reality that I'm checking to make sure that my baby is still alive. I can walk back and forth past the soft fluffy blanket that I bought for her burial (which is still sitting in the stairwell for whatever reason!) 10 times a day without feeling overwhelmed with sadness. Sometimes I cry, and sometimes I do feel that overwhelming sadness creeping in, but mostly I'm just grateful. I never thought I'd be able to say that, but I am. I'm grateful to have this opportunity to be a mommy again, to be her mommy, to protect her and give her little soul a home for however brief a time, to celebrate her and remember her, to learn and grow from this experience.

I don't ask "why", because it truly doesn't matter to me. There is no good reason for my baby girl to die. I know that. But I also know that God uses whatever tragedies do occur in this fallen world to further His purpose and to draw us closer to Him, and somehow I'm ok with accepting that.

Gracie at 20 weeks, 2 days

Making Arrangements

One of the strangest, most uncomfortable aspects of this situation is that there are "arrangements" to be made. There are plans to think through, final wishes to get down on paper. This just isn't the kind of "nesting" that expecting mothers are meant to do. So very unnatural, morbid, and painful. But at the same time, these aren't things that I want to neglect, leave to chance, or scramble to take care of while I'm actively grieving. So on days like today, where I'm feeling relatively "ok" about things, I try to put some thought into these items and do some research and make some headway. After all, only God knows how much time we have to prepare.

For anyone who has never been through something like this (which until a week ago included me!), here are a few of the things I've come across that many couples try to plan for ahead of time:

• 3D/4D ultrasound. Since her time in the womb will likely be the only life my daughter ever has, I'd like to capture it in as much detail as possible. It might be painful to watch now, or immediately after she passes, but I may want it down the road and then it will be too late to capture it.
• Photography. There are many people (initially myself included) who would feel a little "creeped out" by photographs of a stillborn baby. It can seem a little morbid - I get it. But again, that's all I'll ever have of her. The only opportunity I'll ever have to capture an image of Ben and I with our daughter. And again, I don't know how I'll feel about these images once they're taken, but I do know that I don't want to regret NOT having captured them. I will never have to look at them if I don't want to, but I will never be able to look at them if I do want to unless we have them done during the brief opportunity we're given. There is an incredible service offered by local professional photographers on a volunteer basis called "Now I Lay Me Down to Sleep" that comes to the hospital to do a professional photo session free of charge.
• Keepsakes. Just as I captured Eli's little footprints and handprints, saved a lock of hair from his first haircut, and held onto his little newborn hospital hat, we may want to do the same with Gracie. I plan on bringing a ceramic footprint/handprint kit, and maybe some finger paint to paint onto her feet to put a footprint on an ornament or something. Again, I won't ever have to look at these items if it's too painful, but at least I'll have them if/when I'm ready to enjoy them. She may be too small and/or fragile to do all of these things, and that's ok, but I will be prepared to do them if we're able.
• Written birth plan. There are so many wishes and preferences that I'd like for the staff taking care of us to be made aware of. For example, I don't want them to default to doing all the normal newborn care stuff immediately after she's born, if she's still alive. She doesn't need any of that - we just need to hold her. I don't want her taken from the room at any point. I also don't want them to assume that we don't want the normal things like having her weighed and measured at some point, so that we have the stats that all proud parents want to share with their friends and families. These are just some of the things that I feel I need to get down on paper, so that I don't forget the details and so that I can help the staff to help us. I know they will all feel awful, feel sorry for us, feel worried that they might do or say something wrong... I feel like providing them with an outline of what we're hoping to get out of this experience might be helpful to everyone involved. I found a helpful sample on the String of Pearls website, a foundation started by a family who dealt with a similar experience.
• Memorial/Funeral arrangements. I'm still hung up on this one. I don't know how I feel about that. I still feel somewhat private about all of this. It's easy for me to share my thoughts here in writing, alone behind my computer screen. But I don't necessarily want to be around a ton of people right now, and I don't know that I'll want that when she passes either. And I don't know at what point (in terms of how far along the pregnancy progresses) it will stop seeming "weird" to have a funeral with a tiny casket and the whole nine yards. Right now it feels weird to me to have all of that for a 1/2-pound baby. It's hard to explain. Perhaps just a memorial service, though I don't know how to memorialize someone that we never really got to meet. I don't want it to turn into a service all about the sacrifices and difficult choices we made, because that's all anyone can really speak to, having never had any experiences with Gracie to share and remember. Gracie herself is so significant to us, but I know that the real significance in all of this for those who love us is centered around us and what we're experiencing and the sympathy that you all feel toward us. I guess I just don't know how to commemorate her passing, how to make it about her, or whether I really want to do anything public at all. By the same token, I can't just send her little body to the hospital morgue or the pathology lab. I have to lay her to rest in some way. We've been referred to the perinatal hospice program through Gilchrist hospice, which is a program designed to help families who are facing this kind of situation to work through all of these kinds of arrangements and different options that are out there. It's not a meeting I'm looking forward to, by any means, but we desperately need some guidance in that department and it will be a good opportunity to gather information.

So those are a few of the items that have been on my mind today. Freaking weird, right? And so sad. And so NOT the way I had planned to spend my days off during this pregnancy. It's all strangely comforting in a way, though. First of all, having a "to-do list" helps occupy my mind. But feeling like I'm doing something for her also makes me feel good. There's nothing I can do to change the ultimate outcome of this pregnancy for her, but I can do everything in my power to make sure that she is celebrated and remembered. She deserves that as much as any other baby... maybe a little more so, since she won't survive to be celebrated for a lifetime.

In other news, my OB is satisfied with home BP monitoring for the time being until my next regularly scheduled appointment, which is next Friday 5/30. I'll ask her more questions at that point, but for now so long as she is willing to let me continue on in a business-as-usual fashion, I'm all for it. I'll be paying close attention to how I'm feeling and will keep a low threshold for laying down when I need to or calling the OB's office if I'm worried, but my BPs haven't been out of control and I'm comfortable just riding this out for a while to see how it's going to progress.

And with that, my toddler beckons from his bedroom... nap time is over, folks!

Complications

Well, that didn't take long.

This decision we've made, to continue this pregnancy, is just so fraught with unknowns. Only God knows how long Gracie's little heart will continue to beat. Only God knows what complications may lay ahead. Only God knows when the delivery will occur, or how things will go. You make peace with the few "knowns", you give the unknowns to God, and you try to prepare as best you can for a variety of imagined scenarios.

But then some huge wrench is thrown into the mix. As soon as you think you've got a handle on things, "things" change.

One of the concerns with a triploid pregnancy is an increased risk of early preeclampsia. Preeclampsia is defined as elevated blood pressure (systolic greater than or equal to 140 OR diastolic greater than or equal to 90) PLUS either protein in the urine OR one of a list of organ function abnormalities (kidney insufficiency, liver function abnormalities, visual changes... among others). In a "normal" pregnancy, elevated blood pressure that develops before 20 weeks would not qualify for a diagnosis of preeclampsia, but because of the established increased risk of early preeclampsia in this type of pregnancy (due to placental abnormalities), it's on the table for us. As a result of this increased risk, my OB wants to monitor my blood pressure more closely, so I was instructed to measure it at home at least once a week. Being a medical student with the necessary equipment and knowledge, she's letting me self-monitor rather than come in to the office for weekly BP checks.

Today was my first BP check, and sure enough, it was elevated. Not too dramatically elevated, but definitely high for me (I typically run in the 110's/70's). I rested in bed for 10 minutes and repeated it, but it only got higher. Preeclampsia high. I laid down for a nap (having worked overnight last night), and tried again 6 hours later when I woke up. Even higher. 140/100. At that point I knew that I had to call. *SIGH*

So we spent a few hours this evening in a labor & delivery triage room getting BP measurements every 15 minutes and sending off blood and urine samples. The good news is that a) as long as I lay on my left side, my BP comes back down beautifully and stays down, and b) my blood work was perfect - no concerns for organ function abnormalities. The bad news is that a) every blessed time I turn onto my back or my right side, my diastolic pressure pops right back up above 90, and b) I have protein in my urine. So essentially, I would meet the diagnostic criteria for preeclampsia if I were 20 weeks, though I technically don't because I'm 19 weeks and 5 days, but I have a triploid pregnancy so there is a known risk of this happening prior to 20 weeks... you can see that there is a bit of a diagnostic dilemma there. I technically don't fit the published criteria because there are no published criteria for my specific situation. Bottom line: I'm teetering on the hairy edge of preeclampsia.

So... what's next? The midwife and OB in triage this evening were comfortable enough to send me home to follow up with my OB tomorrow to make some decisions about how to proceed. We will likely discuss increased monitoring, further definitive testing, and perhaps bed rest. And I know that the conversation will ultimately turn toward plans for delivery. Preeclampsia is, by nature, a progressive process. It progresses at different rates in different pregnancies, but what often protects normal pregnancies from serious complications is the fact that it typically develops much later and doesn't have nearly as much time to progress to a dangerous level. We don't know how long this pregnancy will last or how quickly this process will progress, but I could have as long as 20 more weeks for this thing to worsen.

One thing is becoming increasingly clear to me: It's only a matter of time. Gracie's heart is likely to stop beating at some point between now and 20 weeks from now (likely sooner than later), at which point we would deliver. My condition is likely to worsen to the point of very serious danger to my health between now and 20 weeks from now, at which point we would deliver (unfortunately even in a healthy pregnancy, there comes a point with preeclampsia beyond which it is safer to deliver a premature baby and care for him/her in the NICU than to leave that baby in the uterus under such conditions, so it's not that we would be forced to deliver only because we have a terminal diagnosis). The question is, which will come first? It's only a matter of time before one of these two end-points is upon us.

Where does one draw the line in a situation like this? How much risk to my health is acceptable? I know that there are those who would argue that until the baby is clearly viable (a distinction which is impossible to make even for a "normal" baby, if we're being honest - you just never know how well a preemie will do), it's just not right to end the pregnancy. There is also the risk to the baby, especially in severe preeclampsia, and eventually the risks of staying in the womb outweigh the risks of premature birth, and early delivery makes sense. But how do you make that decision when the baby will never be viable, even at term? When the baby is already at maximal risk even within the womb? You can't measure risk:benefit ratios when there is no scenario under which the baby will survive. Ultimately, it feels better to me to continue giving her a home to survive in for as long as she can survive, but ultimately, realistically, there is nothing I can do that will change the outcome for my little girl. It's an awful reality for any mother. This choice to preserve her life in the womb for as long as I can really is all I'll ever be able to give to her.

As an aside (but I do have a point here)... the decision to carry this baby until her natural end may seem to be purely religious to many people. Let me clarify, though, that it really isn't. My religious convictions do preclude the ending of human life, and I would consider choosing to terminate this pregnancy to be ending a human life. But more importantly, it would be ending my daughter's life. Not just any human being, not just any fetus... my baby girl. That is not a decision I feel prepared to make. Not only do I feel that it's not my place to decide when her heart should stop beating (because I believe that it's God's decision), I also feel that I DO NOT WANT to be the one to decide. I can't. I can't be the one to decide that her existence is over. She's my baby girl, and I can't stomach that any better than I could stomach doing the same to Eli. I may not have met her yet, but my emotions simply can't handle that. I watched her bounce around on that ultrasound screen like Jacoby Jones doing an endzone dance. I listen to her heart beat and her movements almost every night with our fetal doppler. That's my little girl in there. It's not like my religious convictions have forced me into this decision - it's that I simply can't imagine deciding to end her.

And yet, I am now faced with the reality that we may have to make a decision. It's all still in God's hands, and God is in control of this preeclampsia business just as He is in control of her every heart beat. God has a purpose in introducing this complication to our scenario. I don't know what it is, but all I can do is pray on it and plead for guidance and wisdom for myself, my husband and our doctors. I don't believe in shunning all medical intervention and trusting God with our health because "He is in control". He is in control, but that doesn't mean that He doesn't want us to vaccinate our kids, get screening colonoscopies, wear seat belts, and otherwise protect ourselves with the resources with which He has blessed us. This entire issue just gets extra muddy when an extra human life is involved, and I cannot begin to claim that I understand the intricacies of His will in these circumstances in which we have newly found ourselves. It is all beyond my human understanding.

My hope is that you all will pray for guidance and wisdom for us as we move forward. All we can do is seek His will and lean on Him. I don't know how to prepare for the decisions that lay ahead for us. I just don't know where to begin. It's all so impossible. It's not just about me and this baby. I have another baby whose well-being I have to consider, who deserves to have his mommy around. I have such a strong desire to trust God in this, because I know how ill-equipped I am to manage this situation on my own - I know how much I need Him. At the same time, I have such a strong desire to protect my son, to preserve my health for him. I don't believe that the two have to be mutually exclusive, it's just that I don't know what God's will is for this situation, and to be honest, I'm terrified.

Our Gracie Girl

When you're expecting, there's nothing more highly anticipated than the mid-pregnancy anatomy sonogram (well, except maybe the actual arrival of the baby!). It's (usually) your first opportunity to take a look at who's in there... to see a fully formed baby squirming around. The anticipation is especially intense if you've elected to discover the baby's sex (and we had). Friday May 16th was "the day". To say that I had been waiting with bated breath would be a serious understatement.

It was POURING rain, but that did little to dampen our excitement. We dropped Eli off at day care and headed down to the hospital, so relieved that "the day" had finally arrived, and the sono was finally happening. We went back to the ultrasound room, me with my uncomfortably full bladder all ready for the scan, and Ben with an excited grin that he just couldn't seem to shake. Within 10 or 15 minutes, we had the view we'd been waiting for... "it's a little girl!" You should have seen Ben's face. He was SO excited to have his little girl, his son's baby sister! Of course I, too, was thrilled - I'd had a strong suspicion that it was a girl, though I admittedly felt a little nervous at the prospect of entering into the uncharted territory of pink princesses. But I digress. The rest of the scan went on relatively uneventfully. Having some (albeit limited) experience with ultrasound as a medical student, I thought I had some sense of what I was looking at and everything looked reasonably normal to me. Given the outcome of Eli's anatomy sonogram, we were anxious about the kidneys in particular, but they looked fine and we could see good blood flow to both. We were quite relieved to have apparently dodged that bullet this time around. There would still be the question of Cystic Fibrosis, which rarely produces any sonographic abnormalities (so we didn't expect any news on that front at this appointment), but for now we considered this a victory.

We were dismissed out to the waiting room to wait for a chat with our OB, which seemed relatively routine. After waiting about 10 minutes, Ben was looking visibly anxious and asked if I thought that the long wait meant that something was wrong. I joked that she was probably wolfing down the last of her lunch, and even if there was a problem, what were they gonna tell us... maybe the kidneys didn't look as good as we'd thought? Whoop-de-doo. Been there, done that. It'll be fine.

Soon after that exchange, our doctor came out and called us into her office. With a deep sigh, she invited us to take a seat. That didn't seem like a good sign. She started the conversation with "I'm so sorry guys, I don't have any good news for you..." I could see the pain in her face. I felt my stomach tighten. She went on to inform us that there were several serious birth defects, including spina bifida and omphalocele, and that the presence of two such severe abnormalities was likely due to a chromosomal abnormality. All I could do was keeping nodding and repeating "Ok." "Ok." "Ok." I heard Ben start to sob. I couldn't really see him sitting next to me, I had such tunnel vision. I reached out to wrap my arm around him as I asked a few questions. I couldn't even tell you what they were now. She could only speak in relatively vague terms, saying that it was likely a trisomy 13 or trisomy 18, didn't look like Down Syndrome (trisomy 21), likely poor prognosis, slim chance of survival to term... I just sat there in disbelief. This isn't supposed to happen to young people. This can't be right. Surely we were going to wake up soon. Then through tears, with a broken and strained voice, Ben asked "Will we be able to hold her?" ...and that was when I finally lost it.

Our doctor left the room to make a phone call down to the prenatal genetics office in the hospital - she wanted to make sure that we got in that day and didn't go home to spend the weekend stewing over this earth-shattering news with only vague information. Bless her heart, she was able to get us in within the hour. We wandered through the hospital like a couple of puffy-eyed zombies, following the typed directions we had been given. We stopped for food, both simultaneously starved and on the verge of vomiting. The genetic counselor that we met with explained more about the defects that had been found on the OB's ultrasound - that spina bifida is a defect in the vertebral column that allows part of the spinal cord to protrude outside of the protection of the bony spine. That this protrusion during development pulls downward on the brain causing it to take on an abnormal "lemon" shape. That depending on the location within the spine, there would likely be no bowel or bladder control, and she might walk but likely would not. That it was hard to say what cognitive or developmental difficulties it would cause. That the defect itself was correctable with surgery, but that the neurological damage was permanent. That the omphalocele is a protrustion of the intestines (and sometimes the liver and other digestive organs) outside of the body, covered by a thin sac. That it is surgically repairable and in itself not a devastating defect, but that its presence usually heralds the presence of a chromosomal abnormality, especially coupled with the spina bifida. That the next ultrasound we would have in their office would be more detailed, look for more defects, try to characterize this "syndrome" more clearly. That we would be offered an amniocentesis to provide us with a definitive answer.

Next we wandered back down the same halls we had just stumbled along, to the lab for a blood draw, as I would need a Rhogam shot after the amniocentesis and they had to check something else first. I don't even know. That was quick and we returned to the prenatal genetics office for our more detailed ultrasound. They repeated the entire scan that had been done in the OB's office, paying close attention to the finer points like fingers and feet and fine brain structures. She was so squirmy and active and alive, giving the ultrasound tech a fit as she tried to capture still images... it's still so difficult to reconcile those images with the idea that this child is unlikely to survive pregnancy. And nothing about her really looked "abnormal". I could see the omphalocele, but that was it. She had a perfect little profile with an adorable little nose, ten fingers and ten toes, two arms, two legs and a beating heart. She was even measuring on-track as far as her size, just a little small in circumference.

The OB geneticist came in to scan around herself and try for a better view of a few structures that the tech had struggled with. She explained to us a few more abnormalities that they had found - at least two fused fingers (called syndactyly), one foot that was curved upward, and a small brain structure connecting the hemispheres that didn't appear to be completely formed. Her heart was structurally normal, but appeared enlarged. The bottom line was that the OB was feeling relatively certain that this would prove to be trisomy 18 (also known as Edwards Syndrome), which involves an extra copy of the 18th chromosome and is generally considered to be incompatible with life. Most T18 pregnancies end in stillbirth, with surviving infants usually only living a few hours or days, and the rare exceptions surviving weeks or months. She suspected that given the severity of these defects, our baby would not be one of the rare exceptions, and would be more likely to pass away in utero or within hours to days if she survived to birth. And she was clear that even if it wasn't T18 specifically, the prognosis for this baby with these defects was likely just as poor.

We proceeded with the amniocentesis, in desperate need of a concrete answer. It wasn't even a conversation that we needed to have given our mutual convictions regarding the sanctity of life, but to be clear, the amnio was not about decision-making regarding termination. We just needed to know what we were facing, to be able to confidently put a name on the condition, research it, and prepare ourselves for what lay ahead. We were relieved to hear that results would likely be available on Monday, and we left the hospital that day feeling as though we had a sufficient grasp of the situation. Seeing my healthy, happy baby boy running up the side yard at day care to greet me that day was incredible, and exactly what I needed. All I needed in the world was to hold him tight.

It was a rough weekend, to say the least. We stayed busy with the help of friends and family, but there was a lot of crying, many angry outbursts (not at each other, of course), many ugly thoughts that I'm not proud of. I can't even begin to describe the range of emotions that one goes through in facing a situation like this, but there is also a lot of natural numbing that goes on. That's probably a topic for another post (or several). At any rate, by the end of the day Sunday, I had made significant progress toward shifting my perspective. We were no longer anticipating a child that we would raise together, that would drive her big brother crazy, that would eventually bring boys home (to find her daddy cleaning his .45 at the kitchen table)... we would be living out a difficult pregnancy, day-by-day, in the hopes that we would make it long enough to meet her alive and treasure a few sweet hours, maybe days if we were lucky, together.

Monday (today) came, and I anxiously stalked my phone all day long. I was scheduled for an emergency department shift at 3pm, so I had hoped to get a call before then, but no such luck. Of course 10 minutes into my shift, the phone rang. It was the genetic counselor. She had results. I found a semi-private area and sat down, and she told me that it wasn't anything that we had discussed previously... it was actually worse. Every chromosome that they had looked at with the quick screening test was present in triplicate, indicating that we were likely dealing with Triploidy, a condition in which there is an entire extra set of chromosomes (not just one extra, as in the trisomy syndromes like T18 and Down Syndrome). Normally we have two copies of each of our 23 chromosomes, for a total of 46 chromosomes in every cell. T18 babies have two copies of all chromosomes except 18 - they have 3 18's - so they have 47 chromosomes. Triploid babies have 3 copies of all 23 chromosomes, for a total of 69. Triploidy actually occurs rather frequently, but it usually results in first trimester miscarriage and families aren't even aware of it. Triploid pregnancies only rarely persist into the 2nd or 3rd trimester, and almost never reach term. There are a few case reports of triploid infants surviving a few hours or days beyond birth but it is quite rare, and there is no possibility of longer-term survival. A more complete survey of the chromosomes will be done over the coming days to confirm the diagnosis, but there is little doubt at this point.

And so now that I have an answer, I am prepared to share our news. Our sweet baby girl, aptly named Grace, has Triploidy. She likely will not survive to term. Our hearts are broken, but they are also opening to a different experience of maternal and paternal love. I will carry her for as long as God sees fit to leave her tiny little soul in my care, and we will love her as fiercely as we know how. We don't exactly know how to do this, but we know from Whom the strength will flow, and we know that this thing that He has called us to do is a noble thing. We know that we will be blessed through this experience, and we hope that many untold blessings will fall on others as well.

Gracie, in all her half-a-pound of splendor, is a blessing to our family and a rare and inspirational wonder. Who knows how or why she has made it this far, but I am so glad that she stuck around long enough to be introduced to her mommy and daddy, to show us what a squirmy little fighter she is, and to give us this opportunity to show her an exceptional kind of love.


Hebrews 4:16 Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.