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.

"Your life will never be the same" ...and neither will your furniture

Everyone loves to tell you how your life is going to change forever when you have kids. That's very true - nothing is ever the same. Even from day to day, things are constantly changing. Like when your child starts crawling, for instance...

The pack n' play, which was practically collecting dust in the corner ever since our big man outgrew its main function (the changing table attachment!), has suddenly become my best friend! That, and the jumperoo. I can no longer sit and pump, leave the room to go pee, or even turn my head to glance out toward the kitchen without securing him in some sort of containment device!

I have purchased more "babyproofing gear" in the past week than I care to admit. Perhaps I've gone a little overboard, but I'm so tired of the bumps and bruises! It's bad enough that crawling has brought about an uptick in the previously-only-occasional face-planting-in-the-floor business - that is nearly impossible to prevent, if you want to allow your child the space to develop those motor skills and learn his physical capabilities. I've got to try to prevent the bumps and bruises that I can prevent. That said, I refuse to line every edge of my coffee table in foam (though his little noggin somehow manages to find each and every angle and edge throughout the course of a day)!

Homeboy loves him some electrical cords. GAH. This is the cord to a particularly tall and top-heavy floor lamp that he has nearly brought down on his head more than once. Thank God for these nifty cord hiders! He has lost interest now that the cord is no longer in play.

Gotta lock up those poisonous cleaners, ant baits and paint thinner! It seems that crawling has also brought about a sudden epiphany concerning cabinets - that they contain super-fun, baby-unfriendly items that he's just dying to drink, or cut himself with.

Ohhhh the epic Battle of the Buttons. Since the advent of in-home electronics, babies have been obsessed with dials, buttons, touch screens... anything they can get their little paws on to destroy the delicate balance of settings that allow us to continue enjoying our favorite television programming. I found these life-saving "dvd guards" on Amazon - they're attached by velcro for easy parental access (and probably easy toddler access one day, when he figures out that he's stronger than a few strips of velcro!). Of course I'd also like to teach him that these items are off-limits, so that as he gets older he doesn't think that it's fun to play with the buttons on everyone else's electronics, but that kind of limit-setting is really beyond his understanding at this point. We still tell him "no" when he starts in on the electronics, but this keeps him from driving us completely bonkers by actually changing settings while he's at it!

We have yet to order the gate for the top of the stairs, mostly because I'm a bad mother, I suppose. We just don't play in that area, and I'm not crazy enough to take him into that area and then turn my back on him! But accidents are called "accidents" for a reason... you never plan for them to happen. So I do need to get on that. Maybe on pay day. The upward stairs are a whole 'nother beast, and I'm not quite sure how we're going to finagle a gate for that set-up...

Yeah. You tell me. We may have to hire an engineer for that one. 

Crawling has also made nap time a nightmare, all over again. Usually it's an issue of him waking too early, not an issue of him fighting the nap in the first place (though a few times a week he does fight me). When he has been asleep for less than an hour and wakes up, I know (from my own extensive experience with this particular child) that he hasn't had enough sleep yet, particularly if this happens with his first nap. He'll be I-just-woke-up jolly for about a half an hour, and things will rapidly deteriorate from there. My choices, then, are to go get him and just deal for the rest of the day, or to encourage him to go back to sleep. Neither is particularly pleasant. My hope is that this sleep disturbance is largely a result of his little mile-a-minute mind just racing with wonder at his new skills and all that he is discovering about his surroundings and himself, and that once he wakes he just can't settle his mind enough to drift off to sleep again. If that's the case, then the problem should correct itself gradually as this crawling thing becomes old hat. Of course, then he'll be onto the next big thing! 

Oh, babies. It's always something. Good thing they're so stinkin' cute, and that this milestone-reaching business is such an amazing spectacle to behold. Watching him beam and giggle with pride as he furiously races toward me on his hands and knees just melts my heart!

On Mommy Guilt and Med School

I'd just like to start by saying that this started out as a Facebook status, but then I started rambling and epiphasizing enough that I decided it would look silly as a status update. LOL! I crack myself up with my long-windedness sometimes. Can't even leave a simple status update anymore. Oye.

So ANYWAY...

In preparation for my glorious return to medical school in a few weeks, I've been watching summer year-2 lectures given by my former classmates who are now 4TH-YEARS (so proud of them... they're pretty awesome lecturers)! Never thought I'd say it, but apparently I've been missing this. It's almost got me excited to get back into it. Actually, I think I really am excited and didn't want to admit it just then. Isn't it silly that I feel guilty for being excited about this? Motherhood sure does dramatically warp your sense of self! It's not a bad thing, it just stretches you into this multi-dimensional person I guess, and it takes some time to settle into that new reality and to believe that you can house multiple dimensions inside of your one "self". That you can nurture and develop "multiple personalities" without actually dividing yourself into less-than-whole "selves". Mommy Jenna can be just as complete a part of me as Student Jenna and eventually Doctor Jenna. People try to tell you that, but when you first become a mother it seems like crazy-talk. I think that motherhood is just so all-consuming that it completely takes over who you are, at least for a time. Well, let's be real... it's takes over who you are for life. It's changes you in a multitude of fundamental ways - it's not like you can ever "change back". But the point is that you don't have to "change back", you just have to grow. The assimilation of the "mother" role is sort of an automatic thing - not to say that everyone is automatically good at it or automatically accepts it, but it automatically takes over your life and your psyche no matter how hard you might try to resist it! This "take over" can be a very positive thing - it has been for me, and I'm eternally grateful to God for it - but it's easy to get completely lost in it and forget other parts of yourself. There are other parts that need nurturing too. At first I just forgot those parts altogether, because I am so fulfilled as a mother that I really haven't missed them. They weren't in my face begging for my attention, so they got lost, and I didn't care! Not even a little! Then it came time to reintroduce myself to them, and my initial knee-jerk reaction was pure guilt. They weren't total strangers as I had expected them to be... I found that I kinda missed them, and I felt guilty about that. I thought that it meant that motherhood wasn't "enough" for me anymore, and that it should be enough. The fact that dread was no longer the dominant emotion when I thought about returning to school made me feel like a bad mother.

WHAAAA?????!!!!

I should be ecstatic that this is the case. Finally, the dense fog of fear and apprehension has been lifted and I can see the sunlight! But it just made me feel bad. I should want nothing more than to stay with my baby, at home, forever.

The reality is that I do feel that way. I do want nothing more than to stay at home with my baby forever. But somehow I also feel that I do want to become a doctor. I feel both feelings very intensely. That's the expansion that comes with motherhood. It's nothing new to say that humans can experience two conflicting emotions so intensely, but it's new to me. I've been waiting a long time to have this epiphany, and to see that while in physical reality those may be mutually exclusive events, in my heart they can both be bopping around in there forever. What I feel in my heart for my son is what makes me a good mother, and when a choice must be made that forces me to be away from him, I have to cling to what's in my heart. I don't have a choice about him going to day care. Financially speaking, I can no longer stay at home with him - it's either school or work. But even if I had the choice, it would be a tremendously difficult decision to make. When I'm honest with myself, I can admit that I want this whole doctor thing. I really do. Isn't it sad that I haven't wanted to "admit" that to myself... that I have a dream, and (miraculously) the opportunity to make it a reality?! That doesn't make me a bad mother, though it often feels that way to me. It just makes me a multi-dimensional person, struggling to grow into that multi-dimensionality day by day, struggling to assimilate the many parts of who I am into one functioning person.

It's a tough road, but such a beautiful thing when you think about it. Who I am, the fabric of "me", has stretched and grown and added new textures and designs. I can see now that my intense devotion to mothering my son will always teeter dangerously close to shutting down my will to strive for anything more, because being a mother is such a tremendous gift all its own. I truly need nothing more. What an incredible force motherhood is! But I had to admit to myself that my heart has more than one desire in this world, and that that's ok. What a beautiful reality to live out... watching myself grow and change and deepen in my capacity to really feel out what matters most in my life. That's one of the greatest gifts of motherhood. It has given me a new kind of deep and wide perspective on what matters most, because I now know what it feels like to have something matter so profoundly that my life would seem utterly empty if I lost it. That's not to say that people without children don't know what really matters most to them - of course they do. I also don't mean to suggest that moms who do have the blessed privilege of staying home with their children aren't "striving for more" - we all use our "mom glasses" to see the world in new and different ways, and to determine which desires and opportunities before us warrant our commitment of time and effort. It doesn't have to be a "job", per se, that we choose to pursue with this life we're given. I guess I'm just trying to say that there was this glorious realignment that occurred in my life when we welcomed Eli, and I love the way it has changed my perspective - it is a gift that I will always treasure.

Sick baby, Baby food making extravaganza, and BEACH BOUND!

Whew. CRAAAAAZY couple of days around here. Yesterday my day began with the discovery of some blood in the baby's urine, so a day that I had planned to spend laundering and packing for the beach was suddenly thrown into a total panic. I was flying around here like a house on fire packing for the hospital instead, until our pediatric urologist's team returned my page and calmed me the heck down! Given his underlying kidney issues, it is extremely important that we catch and kill any potential urinary tract infections as quickly as possible to protect his good kidney (since it's the only one he has!). We ended up wasting two hours of our afternoon at Express Care, NOT getting the antibiotic nor the urine culture that the urologist told us to get (I'll spare you the details of the incompetency that I encountered). Useless. Luckily the resident on call at Hopkins was able to call in the antibiotic for me. My poor baby was so pitiful, running a 101.8 fever and eventually vomiting his guts up just before bed :'( He fell asleep like a total wet wash cloth, so limp in my arms that I made a point of jostling him when I got up to lay him down, just to make sure that he was responsive. I also proceeded to check in on him several times during the night, of course. My first experience with a truly sick baby has been exactly what it's chalked up to be... the worst thing EVER. Ugh.

My poor lil babykins, sleeping in my arms at Express Care :'(

He seemed to be feeling much better today, though there were still some tinges of pink in his urine. No fevers, no vomiting, but he didn't have much of an appetite and was definitely dehydrated. At least he was acting like his normal, chipper self! After a follow-up appointment with the pediatrician, we were able to get some of the vacation prep work started - grocery shopping, laundry, some cleaning, and LOTS of baby-food-making!

3 pounds of organic apples, 5 pears, a butternut squash, 4 sweet potatoes and a bag of organic baby carrots. $21.49 at Giant.

Cut the squash in half, lay the halves face-down in a baking pan in about an inch of water. Bake at 350 for 45 mins - 1 hour. Scoop out the "meat", puree in the blender. Add a little of the baking water (which contains any leached nutrients) to achieve desired consistency. DONE.

The worst part of making baby food is the peeling. 9 Apples and 5 pears will take it out of ya! But really, if the only "cooking skill" you need is the ability to wield a knife, how hard can MYO baby food really be? The answer: it's not. 

For apples and pears, I peel, core, cube and bake in about an inch of water - 350 for about 30-45 mins (until fork tender... kinda depends on how ripe they are to begin with, particularly for the pears). Again, just add some of the baking water if you need to thin the puree.

This was my first go 'round with carrots, but they were SUPER easy. I rinsed them, checked them all for any "weirdness" on the ends and trimmed said weirdness as needed, threw them in a pot with a tiny bit of water (just enough to cover the bottom of the empty pot) and steamed until fork-tender, about 15 mins. Threw them in the blender on puree, and never had to make any adjustments - perfect consistency. Awesome! 

All told, I ended up with 182 oz of baby food. For $21.49. That's almost half of what I'd pay per ounce for the Gerber plastic containers of baby food. It did take up several hours of my day, but I only have to do that once every three weeks-ish. Ya can't go wrong, my friends! 

Now I'm all set to head to the BEACH tomorrow with my homemade baby food in tow! I'm a little nervous given Eli's recent health issues, but he seems to be responding well to the antibiotic, so we'll just have to keep a close eye and hope for the best. We'll only be about 3 hours from home anyway. We're heading to OCMD with friends of ours whose parents have a beach house, so we'll be staying for free, cooking in, and just enjoying some good old-fashioned relaxation (and hopefully some CRABS)! Packing for the beach this year - with a baby (and all the STUFF that said baby "requires") - has been a whole new challenge! I have about 5 different lists floating around the house, just trying to keep myself organized and make sure that no essentials are left behind! The place is littered with sticky notes, too. It can be difficult to differentiate between true "essentials" and "stuff that makes my life so much easier", but with limited trunk space (since trading in the Grand Cherokee for a CR-V) we're trying to be as minimalist as is practical with an 8-month-old. We'll only be gone for 5 days, and really, one can live without just about anything for 5 days. "One" doesn't want to have to live without anything on her list, however, so "one" will be quadruple checking before blast off tomorrow evening!

I hope you're all enjoying your summer! Catch ya on the flip side of vacay!!!