New Website!

Hi there,


I've moved the story of our Sunshine Angel baby, Callie, to:  http://oursunshineangel.wordpress.com/ .  


I've switched from Blogger to Wordpress to be able to display my pictures a little bit better.  I'm loving the switch and I hope you do too!  :-)  If you were already following me on this blog, I hope you will "follow" me again on wordpress.  It will allow you to receive emails as soon as I post something.  This will be my last post on this platform.  Thank you for reading :-)

Here Comes the Sun

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun
Here comes the sun, and I say

It's all right

The Empty Room...

Sitting in Callie's room, I am surrounded by things.  Baby things.  Empty baby things.  Lately, I have been completely consumed with thinking about her nursery.  I just don't know what to do with it and not knowing what to do stresses me out.  I like to have a plan.  It is part of my teacher soul to approach a problem with a well-thought out plan... step-by-step.  But who plans for this?  There is no manual and no right answer.  And that bothers me to no end.

When John and I left the hospital, my parents and friends asked if we wanted them to put away all the baby stuff.  I appreciated their concern but I said, "No!"  I had to see it...I needed to see it.  Our first stop after D.C. was Reston Hospital to pick up our car.  There, inside of it, was Callie's empty car seat, her diaper bag, and a "Treats for Daddy" bag that my friend had stuffed full of snacks for John.  This is not how we had expected to go home.  Those treats were supposed to be eaten.  Her diaper bag rifled through for Callie's "going home" outfit.  And, of course, that empty car seat was supposed to be filled with our brand new baby girl...our bundle of joy.  The sight of it ripped my heart out, but something deep within me had to face it.  The thought of ignoring all of those things felt all wrong.  Getting into that car was so hard and I cried looking back at the empty car seat covered in a soft pink BundleMe meant keep our little Callie snug and warm in that cold January weather.

As we drove home, I wept thinking of the night we had packed Callie's diaper bag.  It still remains one of the happiest memories of my life, now so bittersweet.  I had washed all of her sweet little clothes in baby detergent, giving it that indescribable smell of an infant.  We had so many pink outfits we didn't know where to start!  I smiled as I folded Callie's going home outfit and put it in the bag.  John and I had picked the cute black pants and ruffled pink top the day we found out we were having a girl.  That outfit was a must.  As for the rest, I let John take the lead.  I absolutely loved watching him take out every single outfit from her closet and hold it up...  grinning, ear to ear.  He would pick an outfit and I'd fold it up and put it in the bag, the perfect picture of a parenting team.  We laughed and smiled and wondered what Callie would look like.  That bag was stuffed full of pink happiness and dreams for the future...clothes, blankets, hats, bows, and baby socks.  Oh god, baby socks.  What is it about baby socks that brings me to my knees in grief?  

When we came home from that long drive from the hospital in our empty car, we knew all of the items that would greet us inside.  First, in the basement, there was the stack of baby books on the coffee table, the stroller and the exersaucer.  Up the stairs in the living room, there was the swing and the bouncer...the bassinet my father had used when he was a baby, my mom had dressed it all up in pink.  And on the top level, Callie's room and the pack-n-play set up in our bedroom to be used as another bassinet.  John had wanted it on his side of the bed so that he could pick Callie up when she cried and hand her to me to nurse in the middle of the night.

But her room was our first stop.  We wound up the stairs past all of the other baby things, straight for her room.  We opened the door to the green walls and pink curtains and shut it behind us.  Opening her closet, I looked right into the door organizer that held all of Callie's socks.  Those tiny socks broke my heart into a million pieces.  They symbolized the smallness and fragility that is a newborn infant.  The smell of the baby laundry detergent wafted over me as I wept.  None of those pairs of cute socks would ever be worn by our baby girl.  As we looked around the room at all the preparations we had made, I couldn't help but feel stupid.  I know I shouldn't feel stupid, but I did.  Looking at the little diaper caddies I had stuffed with diapers and wipes, I felt foolish.  I felt like an unknowing idiot preparing for something that was never meant to me.  I felt dumb for letting myself be so happy.  Like I said, I like to plan and I had tried to anticipate where would be the best place for every little item.  I had agonized over exactly how to organize her dresser.  I had put the nursing cover on the back of the rocking chair where I planned to nurse during the day.  The diaper creams were in the top drawer underneath her changing pad.  I'd even put her little whale bathtub and baby washing supplies in the guest bathroom, ready for her very first bath.  I'd thought of everything...except for this.

No one plans for this, the very worst outcome.  And here we were... in it.  Surrounded by empty things, empty arms, and empty hearts.  After coming out of Callie's nursery, we told our family to help clear up the baby items scattered around the house.  Every one of these items represented our broken hearts and dreams crushed.  When we emerged later, everything was taken out of sight.  It made me sad, but it helped us move around the house without crying.  Now, all of those things are shoved into our guest room and Callie's nursery.  Every time I pass by there, I think of all of the things inside.  Often, I go into Callie's room and sit in the rocking chair to think, cry, or write.  That's where I am now.  Sometimes we leave the door closed, sometimes open.  But where do we go from here?

At first, John and I had very different ideas of what to do.  I thought about storing Callie's things and making it into an office again...I wanted to acknowledge that she had left us.  John wanted to shut the door and open it back up again when we have another baby...it just made him too sad to imagine putting away her things.  Completely opposite ends of the spectrum and, therefore, a stalemate.  On thing that haunted me was Callie's clothing.  I kept thinking about the fact that we are not guaranteed to have another girl.  In fact, we're not guaranteed to have another baby.  NOTHING is a guarantee anymore.  If we have another girl, maybe she won't be born at the same time of year as Callie and none of these clothes will fit her.  The list went on and on with little thoughts like this that plagued me about Callie's belongings.  What do we do???

As time has passed, though, our feelings have changed and we have both migrated somewhere to the middle.  I don't want to take away everything and John is ready to start thinking about it more.  Talking with a colleague and good friend changed my outlook on things.  She asked me to imagine what I would be doing with Callie's things if she were still living and we were expecting her little brother or sister.  I hadn't thought of another baby as her brother or sister before.  Of course, so long as we are fortunate to conceive again, he or she WILL be her brother or sister.  Duh!  Now we look into Callie's nursery and think about how we would have handled things under different circumstances.  We wouldn't give away all of her clothes!  We'd save them in case we had another girl one day, even if another girl comes at a different time of year...hand-me-downs!  This way of thinking has helped, but it doesn't solve everything.  Some of Callie's clothes are just too emotional to pass down to another baby...what do we do with them?  Do we donate them to Children's Hospital?  After all, the cute yellow-striped outfit Callie wore had been donated to us.  It might be nice to do the same for someone else.  When we met with the genetic team last week, I had all intentions of doing just that.  But, when I opened that diaper bag, I was overcome by emotion and memories and I just couldn't bring myself to do it.  

Ultimately, we've decided to go very, VERY slow.  We ordered two bookshelves to put in our bedroom.  These shelves will help us display some books that were taking up space in another closet.  Clearing this closet will in turn help give us room to store some things like the swing and the bouncer and the stroller that are now cluttering up Callie's room.  After that, we are buying plastic bins to store Callie's clothes.  That part will be so, so hard.  But I know that is exactly what I would do if Callie had been living and had outgrown her clothes.  I'd put them away for a potential baby sister to wear one day.  After that, we have no idea.  We know that in the end, we want Callie's room to reflect both the fact that she was here and also acknowledge that she has left us.  

As much as the memories that surround this room cause me grief, I would not trade them for anything in the world.  As foolish as I had felt when we returned home to see all of the well-made plans we had laid for Callie, I now know that it wasn't stupid at all.  One can't go through life scared of what might happen.  I have to force myself to believe that sometimes, but I know it is true.  People who fear commitment, really fear getting hurt.  And that's what happened to us.  We got hurt...BIG TIME.  We allowed ourselves to be happy, blissfully happy and it bit us right in the behind.  John and I have some choices to make now.  Certainly Callie will affect those choices, but it is up to us in what way we let it happen.  Do we hold back, hesitate to commit to being happy for the fear that something will happen?  Or, do we live fully, without holding back for the hope that something wonderful is on the other side?  Right now, we are still working on it...but I believe that in the end, we will choose HOPE.  

Jeremiah 29:11  "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Not pregnant, just fat...

Nuh-uh.  No, she didn't.  


Yep, she did.  That stupid grocery store clerk just asked if I was pregnant.  I wanted to punch her face in.  I wanted to tell her she didn't look so hot herself.  I wanted to throw the super sharp santoku knives from aisle 12 straight into her stupid, little face.  But I didn't.  Yesterday, when she asked if I was pregnant, I said, "No," and ran away and cried.  


Damn her!  I had just gone for a long run with John and was commenting to him about how I was finally starting to feel a little better about myself.  It has been 7 weeks since Callie left us and although I don't look like my pre-pregnant self yet, I definitely look better than those first few postpartum days.  And just like that, with a quick, well-meaning question from that clerk, I was back to feeling like crap...CRAP!


I've been thinking about writing about this topic for weeks now, but just hadn't felt like it was the right time.  Well, baby, here I am...pissed off and ready to tell it how it is.  

Losing Callie was the hardest thing I have ever experienced in my whole life.  And preggo comments do not help...one bit.  It's already hard enough!!!  From the nice lady on the elevator at the Homestead who said "Babies first!", to the receptionist who took one look at my stomach and told me to let the masseuse know that I was expecting, to the nail lady who asked if I was having a baby and then laughed when I told her my baby died because she had no freaking clue what I was saying, I have been bombarded by cruel, cruel reminders of the empty void that is my stomach.  That place where Callie used to be is now a saggy, shell of itself and every time someone makes a thoughtless comment I am transported right back to my baby girl's death.  It makes me feel so ugly and sad.


Instead, I should feel proud.  That stomach was the house that sheltered Callie as she grew.  There is no greater miracle than that.  I grew a baby!  A precious life.  My stretch marks and C-section scar are my only physical reminders of the fact that Callie was here.  She was real.  I am a mother and she was my baby girl.  I can remember at the beginning of my pregnancy how I wished I could carry around a sign that said, "I'm not fat, I'm just pregnant!".  I would give anything for a sign now that said, "I'm not pregnant, just fat...so leave me alone!"  So now, with no baby in my Baby Bjorn to explain away my tummy, I am left defenseless to dumb people who mean well, but manage to single-handedly ruin my day, increase my grief, and leave me boiling mad.


When I first thought about writing this post a few weeks back, I thought I would try to give some helpful advice to other baby loss mommas who may encounter my blog looking for help.  I know that I found it so frustrating trying to find exercise advice articles online.  Just look at some of these samples:


"Sign up for a mommy-and-me exercise class."
"As exercise-related endorphins circulate in your system, boosting your mood and your ability to cope, you'll find yourself much better equipped to handle the stresses of new parenthood"
"Exercise is good for you, but in the first few months after you give birth, don't overdo it. Your body needs time to heal, and you need time to adjust to your new role and to care for and bond with your baby"


GAG ME!!!!!!  I wish I had a baby to do mommy-and-me classes with...these sources are full of baby talk landmines that you stumble upon as you try to navigate these weird postpartum days without your baby.  Once, I thought I had stumbled upon something good when I saw this site advertising a "real postpartum bodies" gallery where new mothers post pictures of their bellies.  I thought it would be like Dove's Campaign for Real Beauty.  NOT!!  It was just a gallery of women showing off their completely flat, non-stretch marked stomachs.  Who are these people?  Where do they live?  Can I please send them hate mail???


I am going to try to channel this anger into a positive place.  I am going to share my plan for myself here in the most public of places so that others who are walking in my shoes may benefit from knowing that they are not alone.  Not only that, I am going to post real postpartum pictures:

BOOM!  I DID IT!  That's me, 7 weeks postpartum.  Scarred tummy, weird textured skin, and stretch marks.  And I think it's beautiful.  Eat it skinny chicks!


Here it is...K's Plan for Looking Not Pregnant:


-Attitude:
  Remind yourself of these things every day:

• Your body did a beautiful thing:  It might not look beautiful to you right now, but it did a beautiful thing.  Be proud of that.  Some of you may feel like your body betrayed you because it was not able to hold your baby to term.  Just remember that your body created your baby.  He or she was beautiful.  Let your stomach be a physical reminder of his or her presence.  That is more than beautiful.  It is amazing.
• Take it slow:  You just had a baby (possibly major abdominal surgery, like me).  You can not go straight to the gym...even if you read that the celebrities do in People magazine.  They are wacked out, have millions of dollars, and chances are they are not very happy despite the fact that they have a beautiful new baby and fame and fortune.  You are normal.  You are human.  Humans have flaws.  Accept it and move on.  Ease into a routine gently.  
• It will get better:  The first 6-8 weeks suck because you don't feel good about yourself but there is not much you can do about it because you are supposed to be taking it easy.  On top of that, you are drowning in grief.  Just know that it will suck, acknowledge that, and move forward.  Do what you can:  walk, walk, walk and eat as healthy as possible without being a Nazi about it.  Right now, I am making sure that I am eating healthy when I am at home, but I let myself get whatever I want when I am out with friends.  When so much else seems out of your control, diet and exercise are the two things you can completely control.  I'm only 7 weeks out so I am in this phase right now.  Just fighting to stay positive and give what I can give.
• Be real:  It took 9 months to put it on.  Expecting it to come off in one month is totally unrealistic.  Be gentle on yourself.  I have to remind myself of this...a lot.

-Attire:
  As much as I would LOVE to hide behind a baggy shirt and sweatpants, it is just not a good look.  It's depressing.  And it makes me feel even more large and in charge than I really am.  After several not-very-fun shopping sessions, I have found some clothes that are working ok for me right now.
  Some good picks:

• Button-Downs:  Casual chambray button-down shirts can be worn a little loose and look great with jeans/capris and ballet flats!  Feels like wearing a baggy t-shirt but looks way nicer.
• Cute Tops:  Buy tops that have ruffled tiers, buttons down the front (esp. with nice darting that gives you shape), or interesting details.  They are forgiving in the tummy area.  

 

• Wear Layers:  Put a cute jacket or cardigan in a cool color over top of the cute tops to disguise your trouble spots

• Pants:  This is the hard part.  Wear your maternity pants as long as you need to!  I tried on regular jeans...not a fun experience right now.  The waist fit, but the butt was extremely saggy.  Currently, I'm wearing maternity jeans that have the under-belly waist as a compromise because they don't feel so maternity-ish as the full-panel kind.  No one will know if you wear a long tank top underneath your tops.  I do not feel like going out and buying all new pants yet.  That will be my reward for working hard :-)

Before: Taken 4 weeks postpartum... looking kind of preggo.  BOOM AGAIN!  THAT'S REAL!

After: Cardigan + button down makes me look smaller and un-preggo

-Eating & Working Out Plan
  I am the most unathletic person in the history of the world.  Me giving advice on this is like Snooki trying to play Jeopardy.  Totally not qualified.  But, this is the plan I created for myself.  Putting myself out here like this will hopefully help me stick with my resolutions and maybe help someone else looking for postpartum workout advice without all the baby talk.  Do what is best for you.


Exercise:
Weeks 1-2:  Lay in bed and cry.  It's ok.  Give yourself time to heal.
Weeks 3-6:  Walk-  going for long walks is healing because it gives you time to think and process your emotions.  My doctor said this was fine as long as I went slow and listened to my body.  Even if it's just around the block...at least it was something. 
Week 6-8 (after doctor's blessing)-Week 12:  

• Start "From the Couch to the 5K" program.  It uses interval training to increase your endurance.  I started after my 6 week postpartum checkup and I am now on week 2 :-)
• Do yoga/pilates at the gym or with a video.  Gentle strength training, and healing meditation at the same time... winning combo.

Week 13 & Beyond:

• Hit the gym hard!  Go to group classes at the gym like weight lifting, step aerobics, zumba, kickboxing, etc.
• Sign up for a 5K and train for it!

Diet:  Great resource for diet-  http://assets.babycenter.com/ims/Content/post_baby_diet.pdf
I like that it has portion size visuals :-)


Ok, ranting complete.  Writing this blog has really helped me so far in my grief journey.  I'm saying this because I didn't write this post looking for pity or sympathy.  I write to vent, to share, and to heal.  I'm not fishing for compliments here people...so don't even try it.  Please DO NOT comment on this post telling me how beautiful I am or how great I look.  I mean it.  Although that is very sweet, it will feel like a handout after writing about this topic and your words will be empty to me.  What you can do is send me an electronic hug, check in with me from time to time to see if I'm sticking with my plan, send me an inspiring quote that will help me kick ass at the gym, give me a good recommendation for a running playlist, or give me a witty comeback that will make the next person who tries to call me preggo want to run away and cry.  Ok, so maybe not run away and cry...that's mean.  But it will help me laugh about something sad and that is almost just as good.  

Callie's Garden

Just wanted to share a picture of Callie's garden today...  those yellow daffodils are a sign of spring and a reminder of my precious sunshine angel.  We are looking forward to giving her garden an upgrade soon :-)  I'll keep you posted!

Pay It Forward

Hi friends,

Today has me thinking of how much I want to "pay it forward" in Callie's memory.  There are so many moms out there who have lost their babies and do so many amazing things to help other moms who have experienced loss.  I received an amazing gift from a friend recently and learned about Project Heal.  The creator of this project writes the names of babies who have passed away in the sand on a gorgeous Australian beach at sunset.  Perfect for my sunshine angel!  She then photographs the name and posts it on her website.  The photos are also available for purchase.  Another friend I have recently reconnected with started a photography class for grieving mothers as a way for them to heal.  It is called Illuminate and I just signed up!  I can't wait to share my photographs with you :-)

I hope one day to be able to find my own way to give back like these amazing women ... but today, I have stumbled across one small way that I can help... a little boy and his family who need our support.  I first read about a little boy named Danny on the wonderful blog Musings of a Marfan Mom.  Danny was diagnosed with neonatal Marfan syndrome, just like Callie.  His mom writes about Danny's story here.  He and his family are from the UK and are trying to come to Chicago this summer to attend a conference on Marfan syndrome.  However, as I learned today, he is having to face surgery soon and Danny's medical expenses are quite large.  John and I will be using a portion of the funds we received from so many of you in Callie's memory to help Danny.  If you feel inclined, please consider making a contribution to this cause here.

Looking at Danny's beautiful long fingers reminds me of my sweet Callie.  I am so glad that Danny's mom, Sarah, has been able to have so much time with her precious baby boy.  Callie's life was cut so short and I wonder what life would have been like for her if her heart had not stopped beating right away.  I would give anything to know what her smile looked like.  If it is anything like this little guy, I'm sure it would have melted my heart.

xoxo

Blueprints

Driving to D.C. Children's Hospital yesterday was so much different than my first trip there.  On a wild ambulance ride, I had arrived there on a stretcher to be reunited with my husband and my sweet little girl, Callie.  I was filled with anxiety, fear, and physical pain from my C-section.  Yesterday was a completely different experience.  I felt pain, but this time it was emotional pain and a sense of dread as we neared the hospital.  We were on our way to meet with the genetics team that had analyzed Callie's chromosomes and determined that she had Neonatal Marfan Syndrome.

As we drove through the city, we passed a deep gaping hole where construction crews and cranes busily worked to build a new building.  I couldn't help but think of how that deep hole in the ground was much like the feeling of emptiness I had in my heart without Callie.  In the hospital for the first time since her death, I had to fight back the tears that welled up in my eyes. It brought back so many hard memories.  I was a bundle of nerves as we made our way to the genetics office.  When we got there, we were the only people in the waiting room without a child.  It just felt so wrong.  I couldn't help but wonder what brought the other people to this place.  Were they dealing with hardships too?  Were they scared like me?  After Callie, I will never look at people the same way again.  

After being called back, a member of the blur of doctors that assessed Callie sat down and explained her diagnosis to us.  She was kind and put things in a way that we could understand.  Thinking back to the construction scene we had driven by on our trip to the hospital, I couldn't help but think of the parallels between genetics and construction blueprints. I will try not to bore you, but here is how I understood it:

Just like blueprints are the plan for how a building is constructed, genes contain the plans for how we should be built.  They tell your body what "building materials" it needs in order to give you blue eyes instead of brown, or how short or tall you will be, for example.  The genes are stuck together in long strings called chromosomes.  Imagine stapling all of the blueprints for the individual rooms in a skyscraper together to form an overall construction plan for the building...that is like chromosomes.  We each should have 23 pairs of chromosomes, one set from mom and one set from dad.

The genetic counselor told us that there was a "misspelling" on Callie's 15th chromosome on the FNB1 gene.  She had some "insertions" and "deletions" that affected the gene's ability to create the protein fibrillin effectively.  So going back to the construction analogy, on one page of Callie's blueprints, someone left out crucial information (like a support beam or something!) and put in extra stuff that didn't belong.  That could really mess up the whole building!  When these happen on the 15th chromosome at that location, a person winds up having Marfan syndrome, a genetic disorder that affects a person's connective tissue.  Connective tissue holds your body together and helps control growth.  You can find connective tissue throughout your entire body, so the disorder affects many different systems.  People with Marfan Syndrome are often very tall with long limbs.  They also often have heart, vision, and/or skeletal issues.  The National Marfan Foundation's website is a great resource if you would like to learn more.

After researching Marfan Syndrome, we learned that many people with the disorder live full and healthy lives.  So why then, was Callie's life cut so dramatically short?  The genetic counselor explained to us that Callie's "misspelling" occurred in the "critical region" on the gene that can cause Marfans.  Most of the time this means that a child with this sort of misspelling will develop Marfans in its most severe form, where physical symptoms are glaringly obvious at birth, thus the term Neonatal Marfan Syndrome.  This explains Callie's long fingers, loose wrists, contracted joints, and heart valve issues among many other things.  The prognosis for Neonatal Marfan patients is very grim...  living only 1-2 years max due to the severity of the heart issues with these babies.  The doctor explained that to have a case as severe as Callie's is extremely rare.  According to her research, approximately 1/20,000 people have Marfan Syndrome and about 10% of those cases are Neonatal Marfans.  Someone want to try the math on that for me?  It might as well have been one-in-a-million in my mind.  

All I know, though, is that it is much more likely for us (or anyone for that matter!) to have a child born with a genetic disorder than actually hitting the lottery.  So why does no one talk about this?  Before having Callie, genetic disorders seemed like a distant thing that could never happen to me.  I did not give it a second thought.  And now we are those people...the ones that it happened to.  

We continued to grill the counselor with our burning questions.  How did this happen?  If this is genetic, do we have Marfan Syndrome too?  How will this affect future pregnancies?  She patiently answered each one of them.  About twenty-five percent of Marfan cases are the result of a 'de novo' mutation...essentially that means that they are spontaneous, not inherited from the parents.  Most neonatal cases are the spontaneous type.  She said that no one knows why these mutations occur.  They are a true mystery of life.  It is unlikely that John or I have Marfan syndrome since we show no physical symptoms, but the genetic counselor began the process for us to be tested just to rule it out.  As long as we come back negative, our chances of having another baby with Marfan syndrome are slim, but slightly higher than the average person since we have already experienced this mutation once before. We will have to have future pregnancies monitored very closely by a maternal fetal specialist.  

It felt good to have answers and it was reassuring to hear that it is unlikely that we will have to face this again, but it was so scary and hard to talk about our sweet little girl in such a scientific way.  Despite the error in her "blueprints", we think that Callie was a beautiful baby.  Unfortunately, the building that was her body was not built to last.  We are only left to wonder about God's architectural plans.  Life feels a bit like a demolition right about now.  But I suppose, if I put on my hard hat and stick to His plans, that through the ashes-  God will build something beautiful with this life I live.