Lights for Benjamin

Hello Everyone!

Benjamin’s second birthday is approaching.  Last year, we had no clue what to do.  Nothing seemed right.  Besides, we had a two-month-old!  So we just stayed home and missed him.

This year will be different.  We’re holding a Lights for Benjamin event with friends and family at a local park.  Floating water lanterns will be released at dusk, and I’m so excited to share that moment with those who are participating.

Many have chosen to donate beyond the cost of their lanterns, which left us with a bit of a surplus.  The extra funds will be donated to Breath of Hope, Inc. in Benjamin’s name on his birthday.  This is an organization for parents of CDH babies and angels which provides support, resources, and care packages.  Breath of Hope, Inc. was and continues to be an incredible help to me.  If you would like to donate, please contact me via e-mail or by commenting for more information.

***NOTE:  A few have asked about lantern purchase.  They have already been purchased!  Anything collected at this point is to add to the donation total next month.  Thank you so much to those who have contributed!***

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Also, Paisley turned ONE last month!  Time is flying by.  She is such a ray of sunshine.

(Many thanks to Tammy Vogt Photography for Paisley’s photos!)

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I get a lot of incoming traffic from people searching for experiences with balanced translocations.  They are looking for odds–something to provide them with at least a little bit of positivity or hope.  I know because I looked for the first few months of my pregnancy with Paisley and again in the beginning of the pregnancy that we just lost.  I know the odds, but to know real stories about real people who’ve had a healthy baby after a diagnosis of a balanced translocation is worth so much more than clinical statistics.

We’ve been waiting for the genetic results after the D&C for almost three weeks.  I don’t know why I wanted to know if the chromosomes were like Ben’s.  I think I wanted an answer, and I was pretty sure that was going to be it.

But it was apparently girl with normal chromosomes.  Huh.

At first I was surprised.  Not about the gender, because we really had a strong feeling it was a girl.  Then I was kind of upset about getting the answer we’d been waiting for for a few weeks and having it turn out to be a non-answer.  But then I realized…the miscarriage was just one of those things.  As sad as we are, and as unfortunate as it is, it was normal.  We didn’t experience this because of my balanced translocation.  In that, there is comfort and relief, and that’ll have to be good enough.

I don’t know what this means for the future.  I was better prepared for what would change if the results were different and abnormal.  I’m afraid that if we do conceive a baby with an unbalanced translocation in the future and that pregnancy sticks, it will be horribly ironic.  Whichever way it goes, you all will know.  Especially my fellow translocation Googlers who need a shot of our own personal brand of comfort.

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I haven’t updated on Paisley in a while.  She is doing wonderfully!  She’s 10 months old now (what!).  Crawling, standing, furniture-cruising, getting into trouble, and being SO cute that she gets away with it every time.

In no particular order, mainly because WordPress apparently doesn’t do that sort of thing:

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Philadelphia | Missed Miscarriage | International Bereaved Mothers’ Day

Philadelphia

Last week we made our first trip to visit my family in New Jersey since September 2011.  As the plane began to descend and I looked down at the city lights, I realized it would be our first time back to the place where Benjamin’s life began and ended.  It’s an odd feeling of nostalgia–one that I wasn’t really expecting.  I knew from the moment we found out he wasn’t going to make it that it would be hard to drive across the Benjamin Franklin Bridge that separates Philadelphia from South Jersey whenever we’d come back to visit, because between the time we decided to have him at CHOP and the moment we knew he wouldn’t live, we’d gotten used to the idea of driving across that bridge every single day for a few months to visit him in the NICU.  We thought it was so cute and fitting that the man after whom the bridge was named shared a name with our Benjamin.  So many things changed the night the amniocentesis results came in, and what that bridge stood for was one of them.  A small thing to change, but a sad change nonetheless.  It eventually became the bridge we traveled across with broken hearts and swollen eyes the morning after his birth and death.  It was harder than I expected to drive across that bridge again for the first time since.

Missed Miscarriage

I was waiting to announce our pregnancy on the blog until the CVS procedure was completed and the results were on their way.  We woke up this morning prepared to go in for our 10 week ultrasound and, if everything was moving along, make the appointment for the CVS in two weeks.  Since we found out we were pregnant six weeks ago, I have been trying to put some distance between myself and the pregnancy, but I was unsuccessful.  We were pretty excited and encouraged by the fact that I’d made it to 10 weeks without losing the pregnancy.  Unfortunately, the ultrasound we had today showed that the baby stopped growing three weeks ago and his or her heart was no longer beating.

Leading up to today, I’d repeatedly told myself that if I were to miscarry, it meant something was wrong, and nature spared us greater heartache later on down the road.  But the sentiment is less comforting when the miscarriage is a reality.  We are very disappointed and wish today had gone differently.

Since it’s been three weeks and my body hasn’t naturally processed the miscarriage, I’m heading in for a D&C tomorrow.  They will send in what the perinatalogist called the “products of conception” (which seems like such a cold definition to me, but I suppose it’s meant to be) for testing, and we’ll find out if the balanced translocation had a role in the loss.

International Bereaved Mothers’ Day

It’s this Sunday.  Please take a moment to reach out to the mothers you know who have experienced miscarriage, stillbirth, neonatal loss, or child loss.  The following Sunday–Mothers’ Day–is a hard day for all of us regardless of our situation with prior or subsequent children.

Image from Project Heal

Lucky

I’m sorry I haven’t updated the blog in a while.  Paisley keeps me pretty busy, and I wouldn’t have it any other way.  My next round of classes starts up tomorrow after about two months off, so things won’t be slowing down anytime soon.

I do want to talk a little bit about unexpected miracles.  When Dr. Khalek gave me Elizabeth McCracken’s book A Perfect Replica of a Figment of My Imagination, the ending puzzled me.  She finished the book with the birth of her second child after losing her first to stillbirth, and she found peace in recognizing the miracle that wouldn’t have existed if her first hadn’t passed away.  I couldn’t imagine ever finding peace in that.  At first, it seemed like she was saying that the second baby replaced the first in a way; however, now I know what she meant.

First, let me be clear:  Paisley has an identity of her own.  She has made her own way into every single facet of our lives.  Still, it’s impossible to deny that she would not be who she is–exactly as she is–if things hadn’t gone precisely the way they had.

Thoughts of “If Benjamin had lived…” used to keep me up at night in a way that was destructive to my mental health.  I would create a world in which he lived, wondering where we’d be, what he’d look like, what he’d be doing, and so on.  If we still had the luxury of blissful ignorance to congenital diaphragmatic hernias, balanced translocations, etc.  It felt good to escape into the life that almost was, but the repeated process of returning to what was did not help.  Yes, I was pregnant with Paisley, but I wasn’t fully convinced all would go well until she was out and healthy.  And so, I focused on Benjamin and on all of the things that could have and should have gone differently.

These days, I know that if things had gone differently–even in the slightest, most insignificant ways, Paisley would not be here.  Not as she is.  Benjamin cannot exist in Paisley’s world, and she would never have existed in his.  She was an unexpected miracle, one we couldn’t see coming from the room where Benjamin was born, lived, and died.  Even if we could have seen her coming, even if someone said to us that this gorgeous, spunky little girl would come into our lives and make moving on worthwhile, it wouldn’t have mattered then.  But wow–it does now.

I have to be very careful about how I say all of this, because just as I didn’t understand it while reading McCracken’s book, many who haven’t been where we are right now will not understand.  In no way does it make everything better.  There are still nights when I can feel my blood pumping with grief so hard that it tickles the tips of my fingers.  There are still nights when Eddie and I are talking before going to sleep and I just exhale, “I miss him.”  A few weeks ago I was walking from one room to another, not doing or thinking anything in particular, and I was enveloped in grief so strong I had to sit down exactly where I was standing, just to have something to hold onto.  So, no, the second child does not replace the first.  I wish with all my heart that both were here.  But it’s not that way, and it never will be.

My point in this mess of a post is that Paisley’s existence has made it so I can’t trap myself in the world of If Only.  If Only Benjamin had lived.  Paisley, without fail, brings me back to this world, this wonderful life, this family that recognizes how temporary life can be.  How lucky we are to have been made in such a way that we can do something as simple as breathe.  How lucky we are to have a front row seat to witness the only the beginning of Paisley’s life–not the end.

I have two children:  one is an angel, the other is a miracle.  How lucky am I?

As some of you know, my religious stance has gone through some pretty big changes.  I’m still coming to terms with a lot of it, but I cannot deny the beauty of this photo many, many friends have shared with me.  (I also want to mention how grateful I am when friends and strangers send me photos of dandelion puffs–it is so uplifting to know that Benjamin has not been forgotten.)

dandelion

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And now, a few Paisley pictures.  She is nearly 7 months old!

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Elliot Earrings

I know it has been a while since I’ve updated.  Between school and Paisley, there isn’t much time left in the day!  One of my classes is Creative Writing, which I have thoroughly enjoyed.

This post is just to spread the word for a soon-to-be mama of CDH baby Elliot.  She is making truly adorable earrings for $5, which includes shipping.  This is to help with their upcoming medical costs. 

You can check them out here.  Thank you!

I hope everyone has a wonderful Christmas.  We are so excited to experience our first Christmas as a family.

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It’s Only Temporary

Paisley turned three months old on Saturday.  We’re amazed at how fast she’s growing and learning.  She has such a personality and just starting to laugh, which is a lot of fun.

There are, of course, the challenging moments.  I’ve been pooped on, marked with spit up, experienced total meltdowns when she’s had enough of being out on errands.  This is only temporary, I tell myself.  It’ll only last a short while.

The problem with that statement is that it goes both ways, and I find myself saying it when things are good, which is most of the time.  Quietly nursing in the early morning hours; her smiling at everything and nothing; wanting to “fly” all around the house; the sweet baby noises she makes when she’s happy; getting to snuggle her anytime I want; watching her try to figure out her hands.  Tiny baby sneezes and yawns!  It’s only temporary.

I am trapped in bed with a growing baby who wants to do nothing but eat.  It’s only temporary.  But I get to spend the day with her and all she wants is me, her mommy.  It’s only temporary.

So many wonderful people in my life remind me to enjoy these moments.  I assure you–I am.

Just sharing a few photos since the last blog post…

As far as an update on our family, we’re pretty busy.  Eddie is working a ton and I’m back to classes after a year-long hiatus.  The weather is just now cooling to a reasonable temperature here in Arizona and we’re really excited about the first round of holidays with Pais.

Yesterday was International Pregnancy and Infant Loss Remembrance Day.  We lit a candle for Benjamin; the candle smells like toasted marshmallow, which is what he smelled like to me when he was born.

Happy 1st Birthday, Benjamin

A standard work break.

The time it takes to read a book to your child.

A quick workout.

The length of three songs.

Waiting for your food at a restaurant.

The time it takes to fall asleep.

Maybe the drive to work.

Folding and hanging your clothes.

A good shower.

These are all things that last about 15 minutes.  These are all things that last about the length of Benjamin’s entire life, which came and left too soon, exactly one year ago today.

Today should have been so different.  It marks a moment of intense love–a new kind of love–and tremendous loss.  It marks one beautiful, perfect little boy’s entire  life.  A life that forever changed mine.

What are we going to do today?  Celebrate it.  Not with cake and candles and a theme party, but in our hearts and in our actions.  We miss him every single day, and today is no exception.

Happy birthday, my darling son.  Wish you were here.

In the morning it comes, heaven sent a hurricane
Not a trace of the sun but I don’t even run from rain
Beating out of my chest, my heart is holding on to you
From the moment I knew
From the moment I knew

You were the air in my breath, filling up my love soaked lungs
Such a beautiful mess intertwined and overrun
Nothing better than this, ooh, and then the storm can come
You feels just like the sun
Just like the sun

And if you say it’ll be all right
I’m gonna trust you, babe
I’m gonna look in your eyes
And if you say it’ll be all right
I’ll follow you into the light

Never mind what I knew, nothing seems to matter now
Ooh, who I was without you, I can do without
No one knows where ends, how it may come tumbling down
But I’m here with you now
I’m with you now

And if you say it’ll be all right
I’m gonna trust you, babe
I’m gonna look in your eyes
And if you say it’ll be all right
I’ll follow you into the light

You Are My Sunshine

September is coming up quickly.  It’s hard to believe it has almost been a year since Benjamin was in our arms and I find myself wishing I’d held him just a little bit longer, kissed him one more time, mentally traced and memorized his face again.  But I know it still wouldn’t have been enough.  I’d always wish I’d held him again.

I’ve been thinking a lot about what we were doing a year ago.  Every thought begins and ends with, “Well, he was alive.”

When we were at the funeral home, I knew his body was there.  I didn’t want to know where because I was afraid I’d just pick him up and leave.  When I first held his urn in my hands, it hit me that the chance to hold him again and kiss his face was gone.  That would be the first time of many that I’d wish I’d held him again.

To be honest, I’m struggling with his upcoming first birthday.  We don’t know what to do.  There are so many options – balloon release, butterfly release, plant a tree, etc. – but it’s either not the right weather or just not right for us.  We will probably do a delayed tree planting when the weather is right and Paisley is ready for a trip up north.  Most likely it will be an apple tree.  Apples, apple sauce, apple pie, apple cider – these were Ben’s top requests while in utero.

As for September 15th, I think we’ll just take it easy, think of him, and wish he could be here…just like we always do.

Paisley picked the right time to start really smiling.  She brings so much joy into our lives on a daily basis and her smile can brighten the grayest of skies.

Also, we got the pictures from her newborn session!  Here are some of our favorites:

Announcement design from Etsy.Photos done by Tammy Vogt Photography, who also did the Car Wash pictures.  Thank you so much, Tammy!

From her one-month:

And now.  Six weeks and 12 pounds.

CDH Diagnosis Anniversary

Today marks one year since the term Congenital Diaphragmatic Hernia entered our vocabulary.  I remember being on hold with the doctor after he told me, and I delivered the news to Eddie that would change our lives forever from the top of the basement stairs, where Eddie’s office was.  “Results are in.  He has a hernia.”

I’m part of a CDH support group with Breath of Hope, Inc. where this question was asked:

If you had heard of congenital diaphragmatic hernia prior to your diagnoses, do you think it would have made it a bit easier?

My answer?  I’m not sure.  On one hand, the gravity of the situation would have been immediately recognized.  The news wouldn’t have been given to Eddie from the top of the stairs.  I probably would have been more prepared for the range of possibilities that could come next.  But then…August 12, 2011 was my last day of blissful ignorance.  Until then, I didn’t know what a congenital diaphragmatic hernia was, nor how serious it could be.  For a long time I wanted to go back to the afternoon of August 12, 2011, right before my phone rang.  Sometimes I still do.

I waited to ask Dr. Google about CDH for a day.  The doctor had scheduled a conference for Monday, and I’d intended to wait until then, but I made it until the next day.

Dr. Google is rarely kind, and this was no exception.  I found pictures of babies hooked up to machines that overwhelmed them.  Wires and tubes and tape covered their tiny bodies.  I read about longterm problems associated with CDH.  I found many blogs, ranging from nearly complication-free (aside from the CDH itself, of course) to the worst case scenarios.  My heart broke for the CDH babies who chose wings and even then, I couldn’t imagine the pain the parents must have been experiencing.  How did they manage to cope?  Where did they find the strength to get out of bed in the morning?  To go to sleep at night?

This blog shows some visitor stats, including search terms that lead people here.  Sometimes the search terms are so obviously from people who are just finding out that their lives, too, are about to change.  Seeing these search terms – directly from my stat history… mild cdh story, cdh survivor stories, severe cdh stories, should i go to chop for baby with cdh, what effects does cdh have on teenage years, should we have an amnio for baby with cdh, can a cdh heal before birth, can cdh diagnosis be a mistake, labor with cdh baby, it just makes me wish I could trace back to them and tell them it’s going to be okay, no matter what happens.  Coming from someone who knows what it’s like to witness the worst case scenario…it will change you, but you are going to be okay.

I feel awful because I think, these are people who may have just found out that their baby has a CDH.  They’re looking for hope.  They want to know that their baby is going to make it.  And they found out, just as I did, that sometimes…CDH babies don’t make it…for various reasons.

And the most heartbreaking one yet, one of the ones that brought tears to my eyes when I saw it: am i doing it right by putting together a nursery for a cdh baby?  Yes.  Yes, you are, as long as it’s what feels right to you in the moment.  Your child is special, their situation is unique, and the outcome will not be exactly the same as anyone else’s.  We planned on Benjamin coming home until the very end and while it hurt to put away his things — and again take them out for his little sister, knowing those things were intended for him — I don’t regret the plans we made for him.  You always want the best for your children, and medical complications don’t change that.  Always plan for the best case scenario.

One other piece of (unsolicited) advice:  Keep a blog.  Even if you keep it private, although the support we’ve received from friends, family, and strangers has been such a blessing.  It helps to have a place of your own to get your thoughts out there, keep track of what’s happening, and, if nothing else, it will become your song for your child.  Writing/typing this story — this song — has been the most helpful form of therapy, and continues to be so.

Today marks one year since the diagnosis.  If you had asked me one year ago, before that phone call, where we’d be today…I wouldn’t have seen any of this coming.  If I had, I wouldn’t have told you I’d be okay, but I am.  And I certainly wouldn’t be telling you my daughter would be a month old tomorrow.

I know babies are supposed to get bigger, but really?  Slow down, little one.

Below is the blog post from my separate, private pregnancy blog for Ben.  It was posted the day after finding out about the CDH.

Today, Benjamin and I had an MRI – a first for both of us. Starting at about 20 weeks, the doctors started to notice that Ben’s heart is being pushed leftward by some unknown cause. He had a generous amount of fluid in/around his lung, so they were betting on that being the cause. I wasn’t crazy about the idea of a chest tube or other kind of aspiration because I didn’t want my brand new baby to be in any pain, but now I’m wishing that was the worst of it. During the last two ultrasounds, they noted that the fluid had decreased substantially – which is great! – but his heart is still leftward. This problem is in addition to his abdomen lagging behind in growth, so the doctor began to suspect that there might be a diaphragmatic hernia. Being unable to rule it out via ultrasound (due to unclear images), he sent us for an MRI.

While this is an incredible image to have of our unborn son, the MRI itself uncovered that he does have a diaphragmatic hernia. What does this mean? Well, things just got complicated.

The reason his heart is being pushed leftward is because something, and we don’t know yet what it is, passed through a hole in his diaphragm. Whatever it is (we’ll find out Monday, I hope), it’s supposed to be in his abdominal cavity – but it’s next to his heart instead.

Here’s the part that kills me:

The only way this can be fixed is by surgery…very shortly after he’s born.  Then he’ll stay in the NICU for a while to recover. Weeks at best, perhaps longer…depending on the severity of the hernia and how steadily he recovers from surgery.

His chances for survival are greater than his risk of not making it, so that’s what I’m holding onto. It’s frustrating that the potential complications seem to be neverending, but there’s a certain amount of relief that comes with knowing what’s wrong ahead of time. I’d rather find out about this in utero via MRI than through an autopsy. With this information, we can prepare ourselves and the doctors can be ready for him, rather than scrambling as he struggles to breathe. So that’s a positive.

I really think he’ll be okay, but it’s not knowing that scares me the most. This is just a giant hiccup.

I’ll have more information on Monday after we meet with the perinatologist and neonatologist and will update then.

Playing with an Angel

You know how I said I’m perpetually tired these days?  That would explain why I forgot to include two things I’d been thinking of all week in yesterday’s blog post.

1. Mother & Child are Linked at the Cellular Level 
I’m part of a mom group where this blog post was shared a few days ago.  The post is relatively short so there isn’t much to summarize, but the general idea is that the cells of a child a woman carries cross the placenta and remain in the mother’s bloodstream long after they’re gone from the womb.  There’s even evidence that those cells sometimes “treat” some illnesses in the mother.  And as if it wasn’t comforting enough to know that Benjamin is still with me in this way, it’s also possible that his cells have even transferred to Paisley.  So he is with her, too.

2. Playing with an Angel
Paisley giggles in her sleep.  No joke.  It’s not a belly laugh, but she smiles and chuckles at the same time when she’s in that place between awake and asleep.  She makes a TON of cute noises in her sleep and this is one of them; Eddie and I always wonder what she could possibly be dreaming about.

I’ve asked Dr. Google if many things are normal in a newborn these last few weeks, but this was an interesting one.  Many claim it’s just gas, and it probably is, but some think that when a baby giggles in their sleep, it means they are playing with an angel.  I hope she’s getting to know her big brother.