Thursday, August 15, 2013

Looking Back: A Reflection on Seeing the Specialist

This post was originally written on 8/3/13. 

Seven days after our first ultrasound, we left the girls with a friend (the one person in real life who knew what was going on with us) and headed to the MFM specialist.  I'd had plenty of time to consult Dr. Google and know more about what we were facing and came prepared to talk to the doctor.

Before we met with him, we had to talk with the nurse who, of course, needed to update my medical information from the last time.  She initially appeared very confused as to why the computer was showing that I was 60 weeks pregnant - clearly I wasn't here for happy reasons last time and it isn't physically possible for me to be that pregnant.  So, I would have honestly hoped that her powers of deduction might have solved that quandary.  Nope - I needed to explain that Aaron was born in February and had died.  Following that exchange, we then got to listen to her repeat to herself THREE times as she updated information, "Okay, four pregnancies, two living children." "Four pregnancies, two living children."  "Four pregnancies, two living children."  ...My husband is an exceedingly patient man, but by the time we had heard that three times - even he was shaking his head in frustration. (She was a very sweet lady, but obviously not at all thinking about the words coming out of her mouth in front of two people who recently buried a child.) Finally we finished that step and the doctor came in.

My first question was "Why do we even need to do this ultrasound - it's going to cost us a small fortune and won't it show the same thing as the last one?" His response, in a nutshell:  "We are certified for just exactly this reason and I don't trust other people's in order to give you my input, I have to see it."  Okay, made sense to me.  (He also added a few comical details that just reinforces what I've said all along about his bedside manner - he is simply incredible.)

For the next hour, he stayed in the room to talk with us and made us honestly feel like we were the only thing  that mattered in that time frame (impressive, given that I know that they are a very busy practice).  Within the first few minutes of the ultrasound, and while he was still sitting across the room from the screen, he was able to tell us that our baby looked perfectly normal.  He asked the ultrasound tech what she was getting as official measurements and she wasn't even close to the upper range for acceptable limits.  He took the time to explain how the nuchal translucency can be easily measured incorrectly and said that roughly 30-50% of the cases like ours are simply a result of bad positioning or honest error.  He walked us through all of our available testing options and explained what he would recommend, if we chose to do any additional testing at all (at this point, our risk returns to approximately what it would be for the general population anyway).

We will see him again in September for the usual 20 week anatomy scan.  Typically this is done in the OB's office and I was initially a little grumpy about having another expensive ultrasound done, but after time to let it all settle - I'm actually glad that we'll be having it done at their office.  You see, I made the mistake of continuing my quest for knowledge and stumbled upon the ever-growing list of things that can become apparent on ultrasound between 12-20 weeks.  This is truly one of those cases where ignorance is bliss.  I was much better off when my information was "Your baby has a perfectly shaped little head and just the right amount of fluid behind his or her neck."  I should have stopped there.

Wednesday, August 14, 2013

Looking Back: A Reflection on the First Ultrasound

This post was written on 8/3/13.

I'm going to cheat a little for this entry and do some reflection on the week following that first ultrasound.  I simply could not bring myself to sit down and write during that matter how much I knew I needed to, the words just would not come.  And although we are now past this part of our journey, I want to put all those feelings into words before they begin to fade.

I barely slept at all the night before our first ultrasound.  Even though I knew there was nothing I could do to change the outcome of whatever was going to happen, I was nervous.  We had already made the decision that the girls would be staying with my parents that night instead of coming with us to the ultrasound (to be fair, we had not yet told anyone other than a few close friends about the pregnancy).  I could not stomach the thought of them being in the room if we were to once again receive devastating news.

I did reasonably well on the way to the doctor's office, but as we stepped off of the elevator and prepared to walk in, I just lost it.  We were a few minutes late because I stopped at the restroom in an attempt to get it together but quickly realized that with each passing moment, I could literally feel the hysteria working it's way up my throat and it wasn't going to get better with a few minutes of crying in a restroom.  We went inside and I struggled through a brief check-in.  Our favorite nurse came out to speak with us the waiting room (somehow, the receptionist had gotten the idea that I wanted to reschedule?) and I let her know that today was the day - I would be a mess whether we did it now, an hour from now or three weeks from now.

It was the same room where we received Aaron's diagnosis and I can not even begin to describe the intense panic of walking back into that room, sitting on the table and waiting to see the images that would appear.  Even as I sit here typing, my body is nearly vibrating with the emotions that I can do nothing to quell.

She was able to point out almost immediately the baby's full, round head with two neatly defined lobes - no anencephaly.  What an amazing blessing as we got to hear that tiny heartbeat for the first time and see little arms and legs flailing around.  I struggled not to jerk around too much as I worked through the tears of joy.

Then, as she was finishing up the ultrasound, she asked if we had done any genetic testing after Aaron was born.  We had not.  She asked if we had done any yet this pregnancy.  No. Then asked if we were planning to do any. No...but what do you see that is making you ask so many questions?? She informed us that she was seeing an increased nuchal translucency, one that was nearly twice what would be considered "within normal limits." (Simple explanation is this: nuchal translucency is a measurement of the fluid present behind the neck of the baby; it is an indicator of risk for several genetic conditions including Trisomies 13,18, 21 and Turner Syndrome.  It warrants follow-up testing.)  She went to speak with the doctor and since we had an appointment with her that day anyway, she led us to the exam room and we waited to talk with her.

The information was basically what I already knew - what was seen on the ultrasound was not a definitive diagnosis but was a risk factor for a number of things.  They would be calling for a consultation within a week with the same Maternal-Fetal Medicine specialist that we saw to confirm Aaron's diagnosis.  His office called a few hours later to set up an appointment in seven days for a Level 3 ultrasound and a consultation with the specialist.

For those seven days, we lived in a kind of limbo that would be hard to describe.  Our options ranged anywhere from "Your child has another, totally-unrelated fatal birth defect" to "Your baby might be perfectly healthy without a thing in the world wrong" and everything in-between.  With Aaron, the diagnosis was definitive from that first ultrasound...there was little room for doubt.  We began grieving for him almost immediately - those were pretty clear feelings of loss.  This time, we weren't really allowed to feel anything other than terrified at the prospect of burying another child.

Tuesday, August 13, 2013

Looking Back: Our Pregnancy and The Girls

This post was also written on 7/15/13 - before we were ready to announce this pregnancy. 

We have had the discussion regarding, "What will we do if this happens again?" Despite all that we have been through, we would make exactly the same decision that we made with Aaron. My biggest fear here is not what it would do to me or to Chris, but what that means for our children.  We have not yet told the girls that we are having another baby, but that doesn't mean that the topic hasn't come up.

Abby started it...about a day after this new life began to exist, she climbed up on top of me on the couch and asked about the babies in my tummy.  I told her that there weren't any babies in Mommy's tummy and reminded her that Baby Aaron was in Heaven...but the kid was insistent that there was "a boy and a girl in your tummy!"  Honestly, I told Chris about it that night and we sort of dismissed it from there.  About two weeks later, on a Saturday morning as I was changing after work, Abby came running in, slapped both hands on my belly and yelled, "A boy and a girl in your tummy!! Babies in 'nere!"  At that point, it really wouldn't have been time to take a test but I thought I'd humor myself and give it a shot.  Sure enough, it was almost instantly obviously positive.  We'll know more in a few days at our ultrasound...but apparently she knew something was up. 

Then about a week ago, we had a much less enjoyable discussion with Tori.  I'm not even quite sure how the discussion came up, but I think it started because she was upset that God doesn't talk back to her when she talks to him.  That must have led into talking about Baby Aaron being in Heaven which prompted Tori to tell us that she wanted "a new brother or sister that gets to come home and stay here with us."  I think that was one of those moments where I could actually feel a little piece of me die on the hear an expression of such complete heartbreak and clarity from a four-year old is not something that I will soon forget.  We told her that we would do everything we could to have a healthy brother or sister for her sometime soon.  She got very excited and said "I want one to keep and not one in Heaven like Baby Aaron, ok?!"

I simply don't know what challenges lie ahead when it comes to this pregnancy and the girls.  I have a feeling that we are going to somehow have to balance alleviating their fears without offering them too much promise that "things will be okay."  At this point, we know better.  We have lost a child and I have talked with countless other parents who have also lost a child.  We have entered that realm where a healthy baby is no longer something that we take for is something we hope and pray for, something we wait anxiously for, but something we no longer feel is a guarantee.  We don't want to offer them promises of a healthy newborn that we are not in control of providing...we can do everything in our power to try to make that happen, but even then there is no way we can ever control for every variable.

That is the whole issue we, and the girls, are facing right now.  We have seen firsthand that even when you do everything right, you aren't guaranteed a happy outcome.  I know that Wednesday's ultrasound will help ease our mind at least a little, but it won't guarantee that everything will be okay.  No one can do that.  Please please don't try to tell me in the coming months that you are "sure everything is going to be okay."  I know that your intentions will be good, but they are empty words because you have no idea what else to say.  It's okay...neither do we. 

Sunday, August 11, 2013

Looking Back: Three Days Before Our Ultrasound

This post was written on 7/15/13 - before we were ready to announce Aaron's little brother or sister. 

My intention for the last eight weeks had been to create posts and save them in draft form until I was ready to publish them.  We found out in May that we are expecting a new little one to join our family in January.  I had wanted to carefully document our experiences and feelings during these last two months so I could share them in a back-dated series once we were prepared to share that news.  Unfortunately, that hasn't happened.  Here I am, three days before our first ultrasound, and I am just now sitting down to put words to my feelings. I didn't want to wait until after the ultrasound because I'm not sure I would still be able to accurately capture all that has been going through my head after that point, so I want to do it now. (Though, by the time you are reading this we will have had the ultrasound and will have a better idea of what path we will be walking from here.)

I know there are plenty who are going to have opinions regarding our timing and say that it's been too soon since we had Aaron.  To that, I can only say that our lives apparently run on God's timing.  Given that I know my own heart and where my own fears were leading me, I have to trust that He had a hand in the timing for one reason or another. 

For the first six weeks, I didn't even want to call the doctor's office because I knew that would make it feel too real.  I know that isn't going to make any sense to anyone who hasn't been there, but in my mind...once I called the doctor, that started a countdown to the day when we would have to go in and have an ultrasound that would tell us whether this new life was one we got to keep or another where we had to say goodbye.  (Even the woman who set up my appointments was a little irritated that I had waited over a month to call in...but how do you adequately explain to someone that just making the phone call nearly sent me into a panic attack without sounding like a lunatic?)

Turns out, I was exactly right.  I was initially so positive and felt so certain that we would be blessed with a healthy baby this time.  As time goes on, I become more and more convinced that we are going to have to figure out how to make it through all the agony again because we aren't going to get to keep this baby. 

When I let my mind wander and I think about having to walk into the doctor's office and into that ultrasound room, I usually have to stop myself because my chest gets tight and it takes everything I have not to completely fall apart. That day was easily the worst day of our lives...worse than the day he died, worse than the day we said good bye, worse than the funeral.  There was nothing good that happened that day - our rug was yanked out from under us with no cushion whatsoever.  When he was born, we got the joy of seeing our son for the first time.  When we said goodbye, we had the memories of the time we spent with him.  When we buried him, we had the peace of knowing he was at rest.  I remember practically every detail of what happened leading up to the words our doctor said...and as I think about going in for this next ultrasound, those are the moment that keep playing over and over in my mind.  (As a matter of fact, after just typing this paragraph, I had to get up and walk away from this entry for a little while.)

As we approach the twelve week mark, there are only four people besides the two of us that know I am pregnant.  Two are close friends that have been unbelievable pillars of support for me, one is a woman who has also been incredibly supportive since we received Aaron's diagnosis, and the other had a whole different set of reasons behind my choice to share.  We plan to share our news at some point after Wednesday's ultrasound, but this gives us a chance to make sure that we are able to process whatever we see before we are pressured to share with other family and friends. 

Sunday, August 4, 2013

Announcing Our Rainbow

"The term Rainbow Baby is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

Here is our "Rainbow Baby" due to arrive January 31, 2014.  

It's taken fourteen weeks and two ultrasounds, but we are finally ready to share the next leg of our journey.

During the last few weeks, I have been creating a series of posts that have been hanging around in draft form detailing what these first few months have held for us.  I honestly have not yet decided whether I will choose to share those here, in Aaron's space, or whether I will create a new space for sharing this part of our journey.  Part of me believes that this next step is very much a part of Aaron's life, as he is still very much a part of ours.  The other part of me doesn't want to overwhelm the place that began for him with the story of his baby brother or sister.

I suspect that, in the end, I will choose to continue on in this space because it would be impossible to separate the story of this pregnancy from the story of our first son.  And I wouldn't want to, even if I could.

Saturday, August 3, 2013

The Midnight Orange - Christopher's Story

I have so many of my own words to share and hope to do so soon, but for now I want to share a beautiful story that I recently stumbled upon.

Many of you who know me personally have seen me share the sculpture works of The Midnight Orange on Facebook and although I don't yet own any of her pieces, I find them so simply breathtaking that I couldn't help but find myself reading the story of why she began such intimate it is:  (Yes, it is lengthy but I promise you that it is worth every single word.)

FRIDAY, APRIL 23, 2010

Why I Sculpt Child Angels

Christopher Brown was really little. In a class of third graders he was teeniest among all of us. He was also the most spirited. I adored him, so we fought constantly. I was a masochist for those bickerings and used to stare at the small gap between his front teeth as his mouth moved around them proving me wrong in little bursts of animation.

This is not a story about childhood love. It is not a story about friendship. Despite the presence of these things, this is pure ache and a lesson that broke my heart to learn. I will not go into sharing the details of what made Christopher a spectacular being wrapped up in the package of an 8 year old boy. I trust you find me credible and will believe this. I also ask that despite the longevity, in Chris' honor you read this.

On the first day of summer in 1990, Christopher was playing baseball with his brother, sister, and babysitter in his back yard and the ball went over the fence into a neighboring construction site. He climbed his swing set onto his father's shed, then jumped from the shed roof over the fence to get the ball. I cannot picture this in my head (either because the logistics are not clear or because my mind is protecting itself from this visual) but when Christopher jumped the fence his hand hit a latch on a crane which released two cement highway dividers. He fell and they fell on top of him. A very cherished 8 year old lost his life that day.

There was no closure. My mother felt that attending the services would be too traumatic and kept me from saying goodbye in person. I understand, but still. I agonized for years about this, even into young adulthood. So many blanks I could not fill in. I did not know where he was interned, when his birthday was. The specific day he died. Every milestone I had, I wished for him. On first days of school I would find his seat in class and then mentally spite the child who sat there. On last days of school I would be sick at the excitement around me. I'd imagine Chris's thoughts as the final bell rang and he dreamt of ponds and trails and popcorn at the drive-in, not knowing he would die by next nightfall. For years I just carried him with me. The night before my high school graduation I dreamed of him approaching through the crowd, as grown as I, and hugging me. In tears I type this.

In my second year of college I became desperate, not for closure, but for closeness to Chris and wanted so badly to connect with his family. With such a common last name they felt impossible to find. All I could do was speak of him often and hope someone connected. One day this exact thing happened, and by fate a woman scrawled an address on scrap paper and sent me away with it. I finally had a portal to his family and despite years of longing for contact, I had no idea how I could begin to express my heart to them. 

Honestly I do not recall the specific details of the sentiment that I poured into 7 handwritten pages, but my message was strong and clear. I missed Christopher, I loved him still, and I REMEMBERED. Always I remembered him. The letter I received back I held with trembling hands, but never could I have been prepared for what Christopher's mother would share with me.

She spoke of the myriad of emotions that my letter brought forth, and I expected that would be the case. She broke me down entirely when she went on to write that receiving my letter was a true miracle that had breathed new life into their son.  She shared that tragically, the loss of Christopher was so painful for others that he became rarely spoken of.

To hear that Christopher not only lost his life but also his legacy was the greatest shame imaginable. My small but bursting childhood friend had become lost to the world. Was truly buried. I cried for days. She later wrote that the greatest gift I had given them was sharing his memory with other people and allowing him to live on in this way.. Mary and I stay in touch and I am smiling this moment over the profound friendship I found in Christopher's mother.

I visit his grave when I am happy and seek to share that with him. I go there when I am hurt so I can have solitude but not be alone. My husband and I picnic with our young daughters there and they like the bells that softly chime in the fir overhanging his grave site. He is truly my forever friend, and my gift to him is ensuring that despite his life being stifled, his legacy never will be. Now you know Christopher. He was small, mighty, and magnificent. I would be beyond humbled should anyone repost his story as daily I fear that in his 8 short-lived and bittersweet years of childhood, not enough people had the chance to know his name.

This was a gift I could not stop giving to Chris and his family, and with it I achieved the opposite of closure. It burst open a door for me and truly inspired fire in my heart, because it was then that I saw a very clear window into the lives of bereaved parents. One of the things that stood out profoundly to me was need. The need for their children to be acknowledged, celebrated, spoken about. The need to know others remember. The need for a LEGACY.

Sculpting the ever-present bond between parents and children who touch the stars too soon is truly my heart's work and daily I startle at the extreme honor of being so blessed to be able to do this. My goal was to create something for parents to display for others which would then evoke conversation. I really wanted to be able to create some tangible way for parents to show others that it is okay to talk about their children and for my sculptures to be a “starting place”.  In my heart of hearts I pray that people see these pieces and realize that despite the overwhelming pain in losing a child, there is healing for parents to simply know people remember.

Just one of my personal favorites...
Family of 6 with 2 Angels - made to order in any colors