Lila Faith: A Birth Story

You guys, Wilburta is here!!  Except her name isn’t Wilburta…

…it’s Lila Faith.

March 26, 2015_lilas_birth

And as one would expect from this pregnancy, Lila came into the world on her own terms.

We had recently heard good news about Lila’s growth.  However, after a later biophysical profile showed that my amniotic fluid was once again on the low side, we decided it was best that I start my maternity leave a little ahead of my scheduled c-section so I could rest and attend the last few doctor appointments before the big day.

On the morning of Monday, March 23rd, we sent Charlotte to daycare and I took advantage of the time to myself to take a long shower, use the hairdryer that had been collecting dust in my bathroom, and do my hair and makeup.  This is going to sound so shallow, but I wanted to practice curling my hair- like a teenager!- to see how long it would take me.  We were the incredibly fortunate recipients of a hospital photography session (I’ll be sure to share!!) and I thought maybe, just maybe, I would try actually doing my hair.  Yes, 48 hours after birth- HA HA HA HA!  I must have been delusional!  Anyway…

As I swiped on some mascara, I looked up at Lila’s ultrasound taped to our bathroom mirror and the word ‘Believe’ written in lipstick.  I had to smile.  When I originally stuck the ultrasound on the mirror, we were so afraid and so worried about this baby girl.  She had come so far, surprising us all, and it would only be a few more days until we got to see her cute little face.  I couldn’t wait to hear how much she would actually weigh at birth.

38 weeks

The morning of Lila’s birth…totally clueless how my day would end!

Our bags were semi-packed, but I didn’t bother to put my toiletries into the hospital bag before leaving for my doctor appointment because I thought the biophysical profile would go just fine like the others.  I had a list of last minute to-do’s and another doctor appointment to attend that afternoon, but I guess Lila had a different plan that day!

At the maternal fetal specialist, the ultrasound technician checked Lila out, told me all looked well, and sent for the doctor to review everything.  As he reviewed the notes, he started to talk about how everything looked good and how we would proceed as planned with our c-section on Thursday, March 26th but then when he took a look at Lila himself he got drastically different measurements for her fluid levels.  After taking them several times, based on his measurements, he did not feel comfortable with allowing me to wait a few more days and sent me straight to the hospital for delivery.

I felt a little nervous about suddenly having to deliver our little one in a matter of a few hours and felt a bit unprepared even though we had been warned of this possibility continually throughout the pregnancy.  I texted John and said, “Don’t freak out, but I have to go straight to the hospital.  Today’s the day.“, which of course is exactly what you say when you want to freak someone out.  😉 He rushed out of a meeting, grabbed our half-packed hospital bags and met me at the hospital right as I was arriving.

It was a long afternoon of hurry-up and wait but eventually we headed down the hall to the OR and once again, I felt Callie’s calming presence with us there.  I remember asking if they had started yet and they all laughed and said, “Yep! He’s almost to your uterus!” which is just crazy to me because I could not feel a single thing.

Before I knew it, little Lila Faith was out and was carried to the warming station.  She took a few seconds to give a cry which made me so nervous as I asked, “Is she ok?  Is she ok?” but she was!  She gave little bitty kitten cries and was folded completely in half like a taco, with her feet up by her head since she was frank breech for the entire second half of the pregnancy.  Lila will definitely be skilled at the sit-and-reach in PE one day!  After what seemed like an eternity, they finally put her on the scale for the moment of truth…

5 lb. 14 oz.!!!

March 23, 2015_lilas_birth-9

She was a peanut for sure, but she was a perfectly healthy little peanut.  Technically, anything under 5lb. 8oz. is considered low birth weight so after all the worrying and waiting and praying, Lila came into the world squeaking by as a ‘normal’ sized baby, officially out of the ‘runt’ status that had earned her the nickname Wilburta.  And wouldn’t you know it?  There was a picture of a sunshine and a rainbow right there on the monitor of the scale shining over her weight like a little wink from God.

March 23, 2015_lilas_birth-14

A while back, I made some predictions about Lila:

  • “Wilburta” is FINE and because of our history and her little lag in growth back in December they have decided to watch us like a hawk to make sure she doesn’t become NOT FINE.  Which she won’t, because she is FINE!
  • “Wilburta” will be born on her scheduled C-section date.
  • She will be between 6-7 pounds.
  • She will be healthy and perfect in every way.

Ok, so I was wrong about a few of them- but not by much!  She was born three days before her scheduled C-section date at 38 weeks and 1 day and she missed the 6 pound mark by 2 ounces.  Not bad, not bad at all.

As with Charlotte’s birth, we had an amazing nurse who let me breastfeed Lila right there on the operating table and I cried as I watched this teeny little bundle of perfection hungrily nurse.  While pregnant with Lila, we just tried to get from one appointment to the next.  We never really got to think much about what it would be like when she was finally here.  Once she arrived, the relief of having her safely in our arms was so satisfying and fulfilling.  She was a dream realized and a prayer (or millions of prayers!) answered.  It felt so good to do all the little joyful acts of being her mommy and daddy…finally!

March 23, 2015_lilas_birth-19March 23, 2015_lilas_birth-22March 23, 2015_lilas_birth-25March 23, 2015_lilas_birth-27March 23, 2015_lilas_birth-28

Once again, we were surrounded in the hospital by the most amazing nurses, many of whom had been there with us with Callie, and then again with Charlotte.  I am so thankful for their loving care of us, especially to Nurse Cindy again…our special earth angel.  Our family and friends were there to help us celebrate with another rainbow party for our second rainbow girl.  Watching Charlotte meet her baby sister for the first time was such a surreal moment.  All of a sudden, Charlotte seemed so grown up and big!  She was a little freaked out by all the commotion, but with time she is coming around to the idea of having a baby sister.  😉

March 23, 2015_lilas_birth-35

With the roller coaster that we have been on throughout this pregnancy, I fully expected Lila to be a total handful, but she has surprised me with how easy-going she is.  She is totally like “What was all the fuss about guys?” just like I hoped she would be.

March 30, 2015_lilas_birth-4

Thank you for following along in our journey and for all of your support and prayers.  We are so thrilled and relieved to be able to hold Lila Faith safely in our arms and to grow our family once more.

Blessed doesn’t even begin to describe it.


Charlotte Grace: A Birth Story

Last night, I cried because Charlotte would never be 11 days old again.  Actually, I sobbed and laughed at myself at the same time for being so ridiculously hormonal.  Each day is so precious to me.  Every second a treasure.  I have never wished for time to stand still so badly.  I feel a desperate need to remember everything…every moment, every sound, every image.  A long time ago, before Callie and Charlotte, I can vividly remember sitting down for lunch one day with a coworker and sighing that I could not wait for the weekend or a vacation or some kind of break…and she said something that stuck.  Don’t wish away time.  She said once you have kids, you’ll never wish away time again.  She was right.

There was a time, not that long ago, that time couldn’t go fast enough.  After months of waiting for Callie, and 35 hours with her that went faster than the blink of an eye, we were left at home, alone, to wait again.  To wait to heal.  To wait to try.  To wait to tell people.  Waiting for Charlotte to grow.  Waiting for the cry.  Waiting to see if she could really possibly be able to stay with us.  Waiting for the answer to our prayers.

On Thursday, April 18th, our wait was finally over.  At 2:42 pm, Charlotte Grace arrived.

7 lb. 3 oz and screaming.

That day began with anxious waiting.  No food after midnight, save for a piece of toast at 5 a.m.  We killed time as the clock slowly crept forward, inching toward Charlotte.  It is not possible to be more ready than we were for this baby.  Her room, complete.  Meals in the freezer, done.  Baked goods for Charlotte’s birthday party, check!  We had lots of time on our hands.  When it was finally time to go, I looked into the back at the empty carseat.  I remembered the last time, when we came home without Callie.  How hard I cried when I got in the car.  It’s so hard not to look back and compare.


At the hospital, it was odd seeing the faces that had cared for me when Callie was born.  I ran into my old doctor, who wished us the best of luck, on my way through the hospital doors.  The nurse that helped me through labor and surgery was there at the nurse’s station and helped me get ready for surgery once again.  As she hooked Charlotte up to the monitor, she looked at ‘the strip’ and told us it looked normal.  Different than Callie’s experience.  We took a picture to document the moment.  So many familiar people, and they all remembered.  How could you not?  And of course, Nurse Cindy was there.  She came down from maternity to give us a hug and wish us luck.  I’m so glad she was there.

And before we knew it, we were whisked away to the OR.  I didn’t remember it this way.  So clean and happy.  It was scary the last time.  It felt dark, even though I know it wasn’t.  It was filled with tension and the hope that everything would be ok, and it wasn’t.  The nurses this time were making cheerful conversation.  The mood was light.  I was put on the table and John was allowed in, a camera for each hand.  We chatted with a nurse about silly things, which helped calm our nerves.  Where were we from?  What do we do?

And then, they told John to stand up.  And we heard the most beautiful sound in the whole world.  Charlotte, crying.  I laughed through my tears because her cry was not what I had imagined.  It was loud.  It was feisty.  It sounded kind of like a pissed-off duck.  And oh my god, was it beautiful.  My doctor proclaimed that she was going to be more of a “Charlie” than a “Charlotte”.  We’ll see what sticks.

charlotte grace

The nurses put her to my breast to nurse, right there in the OR.  And she took to it right away.  My little barricuda baby.  I couldn’t believe how beautiful she was and that she was all ours.  To keep, here on earth, forever.


After spending some more time nursing and bonding in recovery, John got the honor of wheeling Charlotte’s bassinet to the waiting room, where our family and friends were anxiously awaiting a sneak peek at our rainbow.  As he entered the room, they all jumped up and surrounded her with so much love.  When my doctor came through, they cheered.  And then, Nurse Cindy was there to take Charlotte for her first bath.

Dr. Tudder and Nurse Cindy

Dr. Tudder and Nurse Cindy

When I finally left recovery for my room, Charlotte was placed back in my arms, the weight of her filling up so much emptiness.  I fought back the tears that filled my eyes as I remembered the last time I made that trip.  Without Callie.  The sad eyes of the nurses.  This time, there were smiles.  And cheers!  When John and I got married, my bridesmaids decorated champagne bottles to be opened up on our special ‘firsts’.  First house, first New Year’s, first baby…  We had gone through all of those bottles and had put the baby bottle in the fridge before we had Callie.  And there it stayed, until now.  In that hospital room, we popped the cork and toasted to Charlotte in rainbow cups with rainbow cupcakes on rainbow plates under a rainbow banner.  If you had walked by and not known our story, you might have mistook our room for a gay pride parade.  It was the best party I have ever attended.




After many happy visitors, we approached the day before we could take Charlotte home, Homecoming Eve.  There was a knock on the door and an unfamiliar doctor came into the room.  “The nurse told me there was something wrong with her heart, ” he said.  And just like that, our world came crashing down around us.  My chest tightened as I clutched Charlotte and tears streamed down my face as the doctor asked questions about Callie’s health.  Did we get an amnio with Charlotte?  Tell me more about neonatal Marfan syndrome.  And he listened to her heart and there was something wrong.  Her heart was skipping beats.  He told us it was likely harmless and transient, but given our background they would rather be safe than sorry.  So, they ordered an EKG immediately and an echocardiogram the next morning.  After he left, John and I broke down into sobs.  How could this be happening AGAIN???  We called our friend, Katie, a pediatrician, who promptly drove down from Baltimore to be with us and reassure us.  We needed someone in our corner.  I couldn’t bear the thought that something could happen to little Charlotte and I desperately wanted to take her home with us the next day.  I’m not sure my heart could have taken going home without another baby.

The EKG was shared with doctors at Childrens National, the same doctors who treated Callie.  They remembered us.  And gave Charlotte the VIP treatment.  As quickly as it came, our fears were eased as the doctors told us that Charlotte’s heart issue was benign and very common.  It would go away with time.  Still, we were jittery and our nerves were fried.  Luckily, we have made some incredible connections through our experience with Callie.  Very shortly after getting the news about Charlotte’s heart, we received a phone call from our social worker, Heather, at Childrens who had been such a comfort to us last January and beyond.  She said she had received a note, saying that Charlotte was having an issue and she arranged for us to have a follow-up echocardiogram within a week with her good friend.  So, on Charlotte’s trip home from the hospital we first stopped by the pediatrician who reassured us that everything would be ok and a few days later, we got the best news at the appointment with Heather’s friend, a great cardiologist at Childrens-  Charlotte’s heart would be JUST FINE.  It is a common issue that clears up with time and Charlotte will have a follow-up appointment in 6 months just to make sure.

And so it was that Charlotte came into this world, with joy and happiness…and just a little bit of drama.


In the morning of her birth, before we went to the hospital, the skies opened up and it poured rain so hard that it woke me up.  I couldn’t help but hope that I would see a rainbow after the storm.  I thought Callie would make her presence known in some grand gesture, too obvious to ignore.  There was no rainbow in the sky that morning, but there was a rainbow born that day.  Callie was there in that operating room, I know it.

I know it because I have never felt such peace.  Even though I was nervous, I was WAY calmer than I thought I would be considering everything we have been through.  I truly believe that peace came from Callie.  She was there, lighting up our spirits and hearts.  The peace has lingered since that day.  It has filled John and I with such joy and perspective.  God and Callie sent us the baby we needed.  Charlotte is a good baby.  She only cries when she needs something, but when she cries, it is filled with vigor and vitality.  Reassurance of life and, instead of being stressful, each and every one of Charlotte’s cries reminds me that her life is precious.  I thank God for the noise.  When I am tired, I remember the waiting.  When I feel pain from surgery, I remember the pain of my broken heart.  When Charlotte wants to be held, she gets what she wants.

Because she is only 11 days once.  Today is the 12th day.  What will it bring?

I don’t know, but I do know that Callie has taught me to savor it.  Whatever ‘it’ is.

Right now, you can find us enjoying the present moments, so sweet and so precious, with our beautiful Charlotte Grace.





My dear friend Mabby took these wonderful pictures:


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And, we were the blessed recipients of a beautiful photo session with Erin J. Rexroth.  You can see her blog post here with our images.  I was so touched by the gesture and the care and time she put into giving us such treasured keepsakes.  Enjoy a few below! xoxo

charlottes pic

family picture

Callie’s Playlist

Thank you for the sunshiny flowers and your love and support.

Thank you for the sunshiny flowers and your love and support.

Sweet reasons to smile.  Thank you.  xoxo

Sweet reasons to smile. Thank you. xoxo

One year ago today, I was still innocent.  I woke up wondering, “Will this be the day?”  And it was.

I went into labor right after school.  I rode in an ambulance.  It felt silly…and scary.

I remember thinking, “It’ll all be ok.”  And it wasn’t.

The innocence is gone.

Today, I’m remembering Callie in song.  I think a tiny piece of her spirit shines in each one of these songs for one reason or another.  I listen and think of her.

I love you angel.

For whatever technological reason I don’t understand, these two wouldn’t show up… so here they are separately:

The Beatles “Here Comes the Sun”

Elizabeth Mitchell “You Are My Sunshine”

Callie’s Story, pt. 3…

My heart has never beat so hard as it did while we were getting dressed after that phone call.  As we rushed around trying to get ready, I felt like I couldn’t breathe… like a hollow shell of myself.  John pushed my wheelchair out the back door of the hospital once again and across the bumpy parking lot that separated us from Callie.  Once inside the CICU and in Callie’s room, I cried again knowing that she had had such a hard night without us.  I think only parents of babies in the NICU understand how difficult this is and was for us.  Thank goodness my aunt was there with her.  The doctors came to us and told us that Callie was somewhat stable for the time being and would be back to discuss our plan of action after the results of the EEG came back.  

So, in the time that we waited we spent precious hours holding Callie’s hand and stroking her soft, soft skin.  I lay my face down next to hers so that I could study her every feature.  She had the cutest little chin with a dimple in the middle, like John’s.  Her little chapped lips were so sweet.  Her delicate, long fingers, which had been so scary to me before because they were an external symbol of all of her medical problems, now seemed so dainty and perfect.  To put it simply, she was so beautiful it hurt.  I tried to take a picture of Callie the way I saw her like this, but when I pulled the camera away, I couldn’t believe all of the tubes that stuck out so glaringly in the image I had just taken.  When I was up close with my own eyes, all of that stuff had faded away and what was left was a sweet little baby girl…  my baby.

Soon, our “crossroads” moment came.  The doctors shut the door and sat down across from us.  A new pediatrician was on call and she reminded me so much of my friend Katie, who is also a pediatrician, and this comforted me.  She looked me in the eye and told us what we already knew…  Callie’s EEG showed that she had very little brain function and that, should she even survive the heart issues she was facing (very slim odds), that her quality of life would be very poor.  We had known this, but it still hurt… and then the doctors next words surprised me.  She said that she knew that we did not want Callie to suffer and “you are doing the right thing.”  And she began to cry.  

Hearing those words was the emotional release I had been waiting for.  I crumbled into a weeping mess as I thanked the doctor for being so honest and compassionate.  I was surprised that the doctor had cried, that she actually gave her real opinion instead of giving us some politically correct speech.  She gave us the strength to make the hardest decision of our lives…  to remove Callie from life support.  My doctor friend, Katie, told me later that sometimes she comes home after working in the hospital and feels like she did everything in her power to save a baby, but none of it was the right thing to do.  Being a parent in this situation is so hard, but it must also be so difficult to be a doctor or nurse who has to go through this time after time.  John and I had made it very clear to the doctors that we did not want Callie to go through agony and pain and suffering.  We knew that her time on earth was going to be short.  With this single decision, we gave ourselves to Callie fully.  We chose to let God take her and keep her, with us by her sides loving her and caring for her.  At the crossroads, we chose the path that led Callie to an eternal life of peace in heaven.  And it broke our hearts into a hundred thousand pieces.  Later, my aunt Cindy told me that there really was no choice to be made.  Callie’s body could not sustain her life.  Cindy had watched her fight through the night and knew.  God had already made the choice for us.  I appreciate those words from her more than she’ll ever know.

We called in the priest from the hospital and gathered our friends and family together once again.  He blessed Callie Marie and performed a beautiful service right there in the hospital room.  During one of the prayers, I snuck a peek through my tears at all of the love that surrounded us and Callie.  It was so moving and I was so thankful to have all of them there with us.  How sad it would have been for us for them to not have met Callie at all!  I’m so glad they got to be a part of her life.

After allowing some time for us to gather ourselves, the doctors explained how the rest of Callie’s time on Earth would work…  we would celebrate her life!  I cannot tell you how grateful I am to the staff at Children’s Hospital for holding our hands through this time and helping us to build memories with our little girl who we knew would not stay with us long.  First on the agenda for celebration was to give Callie a bath!  John and I were so excited to take pictures of the nurse giving her her first bath, but when she looked at us she said, “Me?  Oh no, you are giving her a bath!”  We literally laughed out loud with joy… that’s right, JOY!  You may find it hard to believe, but there were moments during this day where John and I were bursting with joy and happiness.  And this was one of them.

So… anyone who has given their first newborn baby a bath knows that it’s kind of awkward.  You are nervous.  You don’t want to hurt them.  You’re still getting used to holding them without thinking they will break at any moment.  Now try it when your baby is hooked up to a bunch of machines in a CICU!  Callie’s first bath was downright comical.  John and I laughed and giggled as we tenderly washed our baby girl and tried to remember what the lady in the baby care class had taught us.  It was probably the worst bathing job ever, but we didn’t care.  She looked beautiful!  I hope that Callie could hear our laughter and feel our loving touches during her first bath.

Callie’s first bath

Afterwards, I put a fresh diaper on Callie’s tiny little bootie and then John and I shared the job of getting her dressed.  We had bought Callie a beautiful going home outfit on the day we found out we were having a girl and had had so much fun packing her diaper bag with cute clothes to wear at the hospital.  I still cry at the thought of that memory… but none of those things were with us.  Our car, and Callie’s bag, was still at the hospital where we delivered her.  Due to some generous and thoughtful donations, Children’s had a selection of baby clothes that we could choose from.  (This is also where we received her cute fleece blanket that now rests with us in our bed.)  Everything was gender neutral so we chose the yellow striped onesie that looked so very much like the sweater that I had worn on Callie’s due date.  It was sunshiny and happy just like Callie.  The nurse also brought out headbands for Callie to wear. There were three:  one pink, one blue, and one white.  John chose the pink… and thank god that thing did not fit her head, because, seriously??   Pink with a yellow outfit?!?  I could not have my baby looking all mismatched!  Happily, the white one fit and she looked so adorable all dressed up.

And then, John and I got to do the one think we had been aching to do since Callie was born.  We got to hold her in our arms.  The nurse gently maneuvered Callie, with all of her tubes and cords, into my arms.  Only mothers can know the overpowering feeling of love that rushes over you in that moment of first holding the child that has grown inside of you for nine months.  I was overcome with emotion as I rocked her and spoke to her.  I tried to burn her image into my mind forever.  She smelled so sweet and her skin was that kind of soft that only babies can be.  Her breathing tube did a little snorting sound every time it gave Callie a breath and it made her sound like a little piglet.  I know that is a sad image, but to me the sound was precious and so cute.  I kissed her over and over and over again until it was John’s turn to hold her.  Watching John hold Callie tore me up inside.  The sight of his big, strong arms holding our little girl so tenderly and lovingly made me fall even more in love with him.  I didn’t know that was actually possible, but it was.  Those of you that know John, know that he was so excited to be a dad.  Actually, excited is probably an understatement.  I have never, ever seen a man be so ecstatic about having a baby.  He embraced having a little girl and couldn’t wait to become completely wrapped around her little finger.  God, it breaks my heart.  He is such a good daddy.


The doctors told us to take as much time as we wanted with Callie, but that was impossible… If we could have it our way, we would have taken an eternity.  The time had come to say goodbye.  When the doctors asked us who would like to hold her, we replied that we wanted to share holding her and so they graciously moved a giant sofa across the room just so that we could sit next to each other and hold Callie together.  And then there we were, at the moment no parent ever dreams of.  We held her and kissed her and talked to her and told her not to be scared.  We told her that we would see her again one day.  Our pastor joined us during this time and we are so glad that he could help us through it and say one more blessing over Callie as she left our arms for the arms of God.  The doctor told us, “I’m sorry.  She’s gone.”  35 hours of life… gone.  She’s gone.  Leaving Callie behind in that room is a memory that will haunt me forever.  My arms felt so empty without her.  

We are left behind to wonder, “What happened?”  Why?  Why?  Why?  We will never know.  All we can do is put one foot in front of the other and trust that God has a plan for us that is bigger than we can comprehend.  I believe that He chose John and I to be Callie’s parents for a very special reason, one that we are still trying to understand.  I am a silver lining kind of person… you know, the kind of person that annoyingly tries to find the positive in everything when you are just looking to vent?  Well, I think that as awful as losing Callie has been, there has also been so much good.  I look forward to sharing those good things with you all over time through this blog and I hope that, at the very least, after reading about our experiences that you reach out to the ones you love and give them the biggest hug you’ve ever given.  Because at the end of the day, love is all that matters. Love like you’ve never loved before and never look back.  And do not take one single moment for granted…even the crappy ones… because even the ugly parts of life are so incredibly beautiful.

Callie’s Story, pt. 2…

Today marks one month since Callie passed away.  Here is part two of her story:

I wasn’t alone for long.  Before John left the hospital, he called my friend, Lindsey, and asked her to come to be with me.  He didn’t tell her much about what had happened, but it was enough that she knew how serious things were.  So without saying another word, Lindsey rushed to be by my side in the very early hours of the morning.  When she entered the room, we both started crying as she crawled into my hospital bed to lay next to me.  She held me tight as I tried to explain everything that had taken place… which was difficult to do because I was so drugged up with pain meds that I felt like everything was a whirlwind.

I can remember that sometime before Lindsey arrived that I had demanded to see the pediatrician who was on call.  I needed to understand.  He had tried to explain to me what was happening to Callie in the NICU but I was in no shape to really comprehend what was going on then.  So when he visited my room, I grilled him again.  I can foggily remember him telling me that Callie had three separate and very serious issues.  The doctor told me that the first, and most dangerous, issue was that Callie’s heart was enlarged and that it seemed like some of her valves were not working properly.  Due to the large nature of her heart, it appeared that her lungs were smaller than they should have been.  The second issue was that it appeared from an X-ray that Callie’s diaphram may have had a hole in it that allowed her organs to move into her chest cavity.  The doctors at Children’s later told us that this was not, in fact, the case… I’m not exactly sure how you can get confused on this, but anyhow, he was mistaken.  Lastly, the doctor said that Callie’s limbs and skeletal structure showed signs of a genetic disorder.  He described her fingers as having “arachnodactyly”, which basically means that they were very long and slender.  Also, according to his analysis of her X-rays, it seemed as though Callie may have had scoliosis which explains why her hips were tilted.  It was then that I first heard the words “Marfan syndrome” as a possible diagnosis for our baby girl.  The doctor seemed unsure, however, because typically people with Marfan syndrome are not born with such severe presentations as Callie.  Because I was so exhausted, that is the best that I can recall his explanation.  I have no idea when I first realized that Callie had been without oxygen for 15 minutes.  It could have been during this conversation…it could have been later.  It is crazy how blurry everything becomes when you have been up for over 24 hours and are taking narcotics for pain.

All of this was so very hard to digest.  How could we have not known that all of this was happening?  I had wished so badly during the pregnancy that I could have had X-ray vision to know what was going on in there… and then after the fact, I wished it even more.  Lindsey was there as my ob/gyn came to check on me… and later as another two of the doctors from the practice dropped in.  They all apologized and said that sometimes you just can’t catch these things.  To me, that sounded ridiculous.  How could you not see her feet and hands?  Her heart??  5 ULTRASOUNDS!!!  But later, I found out that it wasn’t their fault…  as badly as I wanted someone to blame, it wasn’t their fault.  And blaming others didn’t fix anything or make it better…

It wasn’t long into that Friday morning that I met an angel here on earth named Nurse Cindy.  Cindy had a demeanor that instantly soothed me.  She explained that she was a nurse like the others on the maternity wing, but that her specialty and passion was palliative care.  Of course, I had no idea what the heck that meant…  and then I learned.  Palliative care is to help patients become more comfortable and reduce suffering…  like hospice.  They had called Cindy in, despite the fact that Callie was at Children’s, because she had seen countless scenarios like mine before, where babies had been born with conditions that would not allow them to live for very long.  When I learned what palliative care was, I burst out in tears knowing that my baby’s life was so in question.  No one had really told me how bad it was…  I mean they had, but not like that.  I still had this glimmer of hope that she would pull through, despite all of her troubles.  And now, I knew… and Cindy encouraged me to hear it, accept it, and move past it so that I could be there in Callie’s last moments.  Nurse Cindy was there by my side as my advocate.  And by advocate, I mean warrior, go-into-battle, kick-ass advocate.  Cindy told me that her number one goal was to get me transfered to a neighboring hospital to Children’s so that I could be with my baby.  I would have to take out the epidural early and go a little easier on the pain meds, “but you’re a mom now.  And moms do what they have to do for their babies.”  That’s what Nurse Cindy said.  I had been told earlier by the doctors that it wasn’t possible and had accepted my fate…  I had to follow the rules and wait at least 48 hours to be discharged.  I am so lucky I had Cindy because Callie only lived for 35 hours.  Looking back now, I simply cannot imagine not being there with her and I will forever be indebted to Cindy for allowing me to have those special moments with Callie. 

And so we waited… and waited… and waited.  While Cindy spent countless hours on the phone with hospitals and insurance, Lindsey and I talked and my pastor visited.  My dad and brother came.  And more time passed with little word on how Callie was doing.  Meanwhile, John and my mother were at Children’s Hospital.  Our little 6 lb. 10.7oz girl had teams of doctors working on her…  teams.  In and out, they rushed out of her room, examining her, reporting to each other, and reporting to John.  He said it was enough to make his head spin.  Each team of doctors had a different focus.  There were peditricians, cardiologists, pulminologists, neurologists, and genetic counselors.  And tons and tons of wonderful nurses.  Callie was moved three times in those first few hours and eventually settled on the CICU-  Cardiac Intensive Care Unit.  Her prognosis was not good, and all of the doctors had different ideas about what was wrong and how to go about fixing Callie…all the while, fighting to keep her stable.  I can remember talking to John on the phone and him sharing feelings of confusion and worry.  He was so brave to have to face all of those doctors and early decisions all by himself.  He is the best dad in the world.

Finally, thanks to Cindy’s relentless efforts, I got the word that I would be transferred and that a medical transport team was being sent to pick me up.  Now, up until now there has really been nothing humorous about what happened to us, but allow me to lighten the mood.  This transport team was a little “rough around the edges” (that is PC for ghetto).  As we sped away from the hospital, I literally thought that this chick thought she was a NASCAR driver.  Ambulances are supposed to be fast, but not wreckless.  We whizzed through red lights and stop signs without lights on or a siren.  Lindsey, trying to throw in a really subtle hint, asked the driver if she needed a special license to drive a medical transport.  She obviously didn’t pick up on this and said “Na, you just have to have a regular driver’s license.”  AWESOME.  She also told us she needed special “authorization” to use the siren.  What??  Lindsey “authorized” her (when you need something done, ask Lindsey) and the sirens came on for the rest of the trip.  Every bump in the road made me cry out in pain, but at least we made it to DC in record time.

Gratefully, the transport took me to Children’s Hospital first.  When I was wheeled into the CICU (still in my stretcher), I found all of our close friends and family there in the waiting room.  I was immediately overwhelmed with gratitude and the knowledge that we have the very best support system in the whole wide world.  I cannot tell you how comforting it is that they dropped everything to be there for us in our moment of need.  Then, I was escorted to Callie’s room.  John was there and I have never been more thankful to see him in all my life.  Callie looked better than when I had seen her last.  Her skin was pink and, although she was hooked up to even more machines, I thought she was beautiful.  The doctors filled me in on how Callie was doing and I can remember actually having to fight back the feeling of falling asleep as they were talking.  It had now been 36 hours since I had last slept and as I reached from my stretcher to hold Callie’s hand, I could not stay awake any longer.  The medical transport team took me away to the neighboring hospital so that I could be admitted and checked up on by the doctors and nurses there.  This meant leaving John behind so that he could stay by Callie’s side once again.

The difference between the DC hospital and the county hospital I had been in previously was like night and day.  I had the overwhelming feeling like I was being wheeled into a jail cell.  The room was tiny and old.  And although the nurses were sensitive to what had happened to me, no one else really was…  like the food service lady who flung open the door without knocking, shoved food in my face, said, “Dinner”, and slammed the door on her way out.  After resting, my friends came in to check on me.  We talked about Callie and her prognosis, we cried.  I truly have the best friends in the world.  Later, I wanted to go see Callie again, but for who knows what reason, they wouldn’t allow my friends to go with me in the tunnel that connected the two hospitals…  there may have even been certain hours that even I couldn’t have gone through as a patient…  I can’t remember… but what I do know is that they certainly weren’t willing to bend any rules, even for the mother of a dying baby.  Not cool, really not cool.

So, naturally…  my friends busted me out of that place!  They pushed me in a wheelchair down long halls and out the back door of the hospital, across a parking lot, and into the back door of Children’s hospital.  The whole way there they joked about how it felt like a jailbreak and I had to beg them to stop making me laugh so hard because it hurt my incision.  I love that they could make me laugh even during the worst of times.  I’m so glad that I got that time to be with John and Callie that night.  I showered Callie in kisses and held her tiny little hands. 
Finally, after much time had passed, the doctors and nurses encouraged us to go back to my hospital room/jail cell to get some rest.  It killed us to leave Callie, but neither one of us could keep our eyes open any longer.  My Aunt Cindy, volunteered to sleep in Callie’s room with her so that she would not be alone… yet another act of selflessness that greatly touched us during this time. 
Callie in the CICU at Children’s

Throughout the day, John and I had talked about the decisions that lay ahead of us for Callie.  She was on life-support, but the doctors encouraged us to give them more time before making any decisions.  They had all sorts of operations and procedures that they told us would help her heart.  As her doctors, they were all doing everything in their power to save her life.  That’s what doctors do.  But as her parents, we wanted what was best for Callie.  The neurologists were collecting data from an EEG (which is what was under her little white ‘gnome’-looking hat) to see how Callie’s brain was functioning and would need until the morning to know more, so as we went to leave her, I begged Callie to send me a sign of what to do.  “Please tell us what to do baby girl.” 

John pushed me back across the parking lot to my hospital and after I was examined by the nurse, we cried for a long time.  And we talked and talked and talked and prayed for guidance on what to do.  I am so lucky to have such an incredible man as my husband.  Without him, I could have never made it through all of this.  We gratefully fell asleep quickly due to exhaustion, but sleep did not last long.  At 4:30 in the morning, John’s phone rang.  “I’m afraid we may be reaching a crossroads,” the doctor said.  Callie had answered me and God had answered my prayers.  She was letting us know what we needed to do for her. 

Callie’s Birth Story

One month ago today, Callie Marie came into our lives.  Here is her birth story…

Callie’s due date, Thursday,  January 26th, 2012, started with a few tears.  Despite the fact that I wanted Callie to wait for her induction date of Jan. 30th for maternity leave purposes, I was a little disappointed that our little girl hadn’t decided to make her appearance yet.  I rolled my huge pregnant belly out of bed and got ready for school, taking time to actually do my hair and put on a sunny yellow sweater in an effort to look cute so that I didn’t feel like a giant fatty.  School was busy and filled with last minute directions and preparations for my long-term sub.  I waddled down the halls fielding all of those end of pregnancy comments like “I can’t believe you’re still here!” and speculations of when the baby might come.  I was confident that Callie was snug inside of me and wasn’t going to be coming out until her induction that coming Monday.  After all, I had just been to the doctor the previous day and was told that my cervix was still closed…no progress.  All day, I had felt fine- if you count being exhausted as fine- and had no reason to think that our little girl would be on her way that night.  It seemed like any other day.  Boy was I wrong… 
 Due date (and absolutely no clue)
When I got home from work, I planned on letting the dogs out and then running out to buy my husband, John, a present- a new money clip from me and Callie.  I had to go to the restroom first though.  That’s when the trouble began.  After going, I noticed I had tremendous swelling “down there” and actually thought that the baby might be coming out.  I called the doctor and they urged me to call 911.  I had no idea what to do…I hadn’t felt a single contraction…surely this couldn’t be it, right?  After calling John, who urged me to listen to the doctor’s advice, I called 911 and an ambulance appeared after a few minutes.  By this time, my swelling had gone down a little bit, but I was still very uncomfortable and incredibly nervous.  The paramedics put me in the back of the ambulance and, after examining me, decided that I was not an emergency, but that they would transport me to the hospital anyway.  John got there right at that time and I asked him to ride with me because I was so scared.  Later, that turned out to be a dumb move because we were stranded there at the hospital without a car, but in the moment, it seemed like the right thing to do.  The paramedics were so nice…they drove us all the way to the neighboring hospital (bypassing the local one) just so I could be at the hospital we had planned to deliver in with my doctors.  I can remember feeling so nervous and embarrassed about calling 911.  John was just grinning from ear-to-ear, excited to become a daddy.  I love him for that.

After getting to the hospital and getting all set up, the labor and delivery nurse told me I was 1 cm dilated and hooked me up to all the monitors.  I began to start to feel small contractions and they were spaced closely together, but not very strong.  The doctor thought that my swelling could have been due to having a potentially large baby that was messing with my circulation a bit.  I smiled at the thought of having a big, chubby baby girl.  The nurse guessed that it was likely a false alarm, too early on in labor, and that we would be going home after a bit of monitoring.  That prediction couldn’t have been further from what actually happened. 

Shortly after hooking me to the monitors, the nurse asked me if I had eaten much that day or drank much water.  She said she was thinking that the baby seemed a little sluggish because I hadn’t had enough to eat and drink.  I had eaten a normal lunch but it had been a while since I had eaten prior to going to the hospital and I could have done better that day with my water intake so I figured she was right.  They hooked me up to an IV to see if the baby would ‘perk up’ and I wasn’t sure what she meant by that, but prayed that the IV would help and secretly hoped that they wouldn’t send me home because I was ready to meet our little girl. 

After more monitoring, I noticed the look of concern on the nurse’s face.  She told us that the baby’s baseline heart rate was ‘flat’.  Her beats per minute were fine, but that her heart wasn’t being very reactive to labor.  Later, someone explained to me that having a flat baseline was not a good thing because the heart should accelerate and decelerate a bit in response to the contractions I was having.  Instead, Callie’s did not react much at all…just kept beating away at the same rate.  That’s the best I can understand it at least.  The doctor came in and decided to keep me since Callie’s baseline had not perked up.  At that point, my contractions were getting much stronger and I was about 3 cm.  John and I were so excited to get the green light to stay…we were going to have a baby!  But, at the same time, we both felt so nervous.  In my heart, though, I never felt like something terrible would happen.  I had this reassuring feeling that everything would be ok, so even though I was nervous, I never feared that something bad would happen to Callie.  John called my mom to tell her the good news and she hopped in her car to drive the four hour trip up to Northern VA.  She was so excited to be a nana that she didn’t care what time it was. 

Since we had finally gotten the word that we would be staying, the nurses and doctor reassured John that I had a ways to go and that nothing exciting would be happening in the time he was gone so John asked our neighbor to come pick him up so he could grab our car, the baby’s bag, and his Daddy bag.  I got into a lovely hospital gown and hunkered down for the rest of labor.  A while after John left, the heart rate monitor started going crazy.  Callie’s heart was making the strangest noises and rhythms and it sounded anything BUT normal.  Nurses rushed into the room and turned me to my side and put an oxygen mask on my face.  The crazy rhythm didn’t stop.  I was terrified, but tried my best to stay calm and take deep breaths like the nurses were asking me to do.  Literally as soon as the doctor stepped into the room, Callie’s heart beat returned to normal like she was playing a practical joke on everyone.  The doctor took a look at the ‘strip’ and examined me and said that the baby had a deceleration and that if this happened too many times that she would need to take her out via C-section.  She also said that they wanted a better way to monitor her so she applied an internal fetal heart monitor to Callie’s scalp…which freaked me out, but I knew they needed to do it in order to keep track of her heart better.

I called John and told him what had happened and urged him to hurry back to the hospital.  I know he felt terrible for not being there when that happened, but there was no way for him to have known.  When he had left, we just thought the baby was a little sluggish or sleepy, not in danger.  As John walked back into the room, I instantly felt that relief of having my husband by my side.  I must have looked so scary to him being hooked up to oxygen and having to lie on my side.  I was just so glad to have him back.  The entire time, my nurse rarely left our room and was constantly staring at the baby’s monitor, keeping vigil.  After laboring for a while more, the doctor came to check on my progress only to find that I was still holding strong at 3 cm.  She decided to break my water to help labor along.  Let me tell you, that was a weird feeling!!  Breaking my water made my contractions intensify and I eventually decided to get an epidural to help with the pain.  Epidurals are AWESOME!  I was then able to relax and distract myself by watching the Jersey Shore.  Nothing helps ease my nerves better than Snooki and Pauly D.  Oh, and John.  John was the best labor coach in the history of the world.  He was reassuring, comforting, and calm.  I am so lucky to have him as my husband.

The rest of my labor is kind of a blur.  I know that at some point, the doctor decided to give me Pitocin because my contractions were not getting me anywhere.  And I know that Callie’s baseline continued to be flat so I had the oxygen ongoing and I would have to periodically switch sides to see if it would help anything.  It felt like there was a long stretch of time where everything was just the same.  I can’t remember now if this happened once or twice, but I know for sure that Callie’s heart decelerated at least one more time in the early hours of Friday morning.  The nurses rushed in again along with the doctor and after having me switch sides and take deep breaths, the doctor said she did not feel comfortable having me labor any longer.  It was time for a C-section.  My mom had arrived by this point and she came in to say hi as John changed into his scrubs.  I am so glad she was there too. 

And then, there we were in the OR.  I remember being lifted onto the table.  I remember John coming in to be my side.  I remember the anesthesiologist soothingly talking me through the surgery as he stood near my head.  And then, I remember the moment the doctor pulled Callie out of my womb.  She made the faintest, tiniest cry…and then nothing.  A horrible, awful silence that was the loudest and worst sound I have ever heard.  I can remember the nurses rushing Callie to the side of the OR without bringing her to us first.  All I could think is “Cry, please cry, please cry, please cry.”  But she didn’t.  I remember hearing someone say the word “epi” which I knew (from all of my Grey’s Anatomy watching) meant that something was wrong with Callie’s heart, but I had no idea that her heart had completely stopped.  John told me later that he could hear the doctor counting as they did CPR on Callie to resuscitate her….  they tried to do it as quietly as they could so as not to frighten me.  That must have been torture for him to hear.  As my doctor worked to sew me up, I stared into John’s eyes and prayed…prayed that Callie would be ok.  I will never forget the look of concern on his face and the tears welling up in his eyes…he fought them for me, trying to be strong for me so that I would make it through the rest of my surgery ok.

Finally, after what seemed like an eternity (but mere seconds at the same time), the doctors and nurses asked John to come over and see our baby girl.  They had restarted her heart, but it had taken 15 minutes to do so.  Callie had gone without oxygen for 15 minutes…15 freaking minutes!!!  I don’t know when we first learned that it had taken this long, but I do remember that it shocked me.  It had seemed like a long time, but not 15 minutes.  Callie was a fighter for sure.  As John walked over to meet Callie, I can remember the anesthesiologist telling me that there was something wrong with her hands and feet.  As a teacher, I have worked with several students with physical disabilities and I asked the doctor if Callie’s hands and feet were like those of some of my students.  He said no, that her fingers and feet were very long and that when babies are born with problems like that on the outside, that oftentimes, there were problems on the inside too.  When John came back from seeing Callie, he was pale and his eyes were red from crying.  It was then that I knew that Callie was not going to be ok…  I could see it in his eyes even though he tried to reassure me.  Later, John told me that when he went to Callie he could see the nurses’ and pediatrician’s hands shaking.  To him, having a doctor shake like he had been rattled was the ultimate sign that what was happening to Callie was rare and scary.

After John came back, the nurses brought Callie to me wrapped up in a blanket and with a breathing tube in her mouth.  Seeing them breathe for her by squeezing the air pump was terrifying…and she was grey, so pale and grey.  I told Callie how much I loved her and begged her to be strong and to fight like hell…and she did.  Callie was the strongest little baby I know to have endured all that she did in her short time on earth.  Before I knew it, they had whisked Callie away to the NICU and John was faced with the gut-wrenching decision of staying with me or going to be with our baby.  I told him to go be with her.  “She needs her Daddy,” I said.  And so he did.  A hush fell over the OR as he left the room.  The doctor worked on finishing the C-section and the anesthesiologist rubbed my temples and asked me to take deep, deep breaths. 

Meeting Callie for the first time 
My thoughts during that time were a jumble of emotions:  fear for Callie’s life, worry for John, and an overwhelming desire to understand what in the world had just happened.  Why?  How?  I had an incredibly normal pregnancy.   I took my prenatal vitamins each and every day.  I never missed a doctor’s appointment.  I had FIVE ultrasounds…count them, FIVE!  How could I have just delivered a baby with so many problems and not have a single clue that something was wrong?????  I wanted someone to blame.  I wanted to point the finger at my doctor and tell her that she screwed up.  I was mad and completely terrified of what lay ahead for us.

After I was all sewn up, the nurses wheeled me into the recovery room.  My mom came to me then and I finally let out the emotions that had been pent up inside of me.  She told me that Callie’s heart was in trouble and that she needed to be transferred to Children’s Hospital in DC.  I couldn’t believe that my little baby girl, who had seemed so healthy throughout my pregnancy, was now needing emergency transport to a specialty hospital.  The weather was so dismal that they couldn’t get a chopper in for her (A CHOPPER???  FOR A SIX POUND BABY?? Another shock of how critical her condition was…) so a transport team was being sent from Children’s by ambulance.  Mom asked permission to go with Callie on our behalf because John was in no shape to drive (being up for over 24 hours and going through trauma did not make for the best driving conditions) but I told her no.  Callie needed her Daddy.  So, instead, my mom asked if it was ok for her to drive him there since he was not allowed to ride with Callie.  I’m so grateful she was here during our time of need.  I couldn’t imagine what it would have felt like to have had John get in some sort of accident in the rush to be by Callie’s side.

And then, just like that, I was alone.  Alone and shaking in the recovery room.  Without my baby, without my husband…  my arms were empty and I was all alone.  I couldn’t believe that just the day before, Callie had been safe and sound inside me and now, in the blink of an eye, I was utterly alone.  After an hour and a half of shaking and ‘recovering’, I was told that I could leave and that Callie was still in the hosipital’s NICU awaiting transport and that they were going to take me there to see her before she left.  Although I was grateful to see her, I was annoyed that she hadn’t left the hospital yet.  What could possibly be taking so long?  Isn’t this an emergency?  Later, I found out that Callie was fighting for her life and was not stable enough to transport during that time. 

The nurses brought me up to the NICU and wheeled me into the room where Callie was lying, hooked up to a breathing machine and all sorts of tubes and cords.  This was the first time that I got to see her whole body up close.  She was still so pale and her head had to be tilted up at an odd and uncomfortable looking angle to accommodate her breathing tube.  That was the hardest part for me to see.  After getting over this shock, I noticed her long, thin fingers and the way the thumb on her left hand was crossed unnaturally across her fingers.  Her feet were also long and thin and they were tilted upwards.  Her hips tilted to an angle.  Seeing her like this was the most surreal moment of my life.  All I could think of was Why??  How??  Again, I couldn’t comprehend that this was our baby.  I kept thinking, “Where is our real baby?  This has to be some sort of mistake.”  And it wasn’t.  But, I loved her…oh, how I loved her.  I held her hand and John’s as a priest was called in to baptize her.  And then, it was time to say goodbye again.  I kissed Callie’s hand, and kissed John goodbye and was whisked out of the NICU as the transport team worked to take Callie away.  
 Callie in the NICU
The longest trip of my life was the journey from the NICU to my room on the maternity wing.  I wept the whole way as I passed by rooms where I could hear babies crying…  Perfect babies that were healthy and hungry, crying for their mommies to feed them or change them or hold them…  Babies that could be held, cuddled, and comforted in their mother’s arms.  As I was wheeled down the long hallway, the nurses watched me pass with looks of sympathy on their faces.  And it was so, so quiet… except for my weeping.  The nurses lovingly put me into my bed and stroked my face and told me that they were sorry.  I remember that when I looked up, there on the wall was some sort of baby advertisement that made me sob anew and they graciously took it down so that I didn’t have to face it anymore.  And then they left, and I was all alone watching the clock tick by and wondering where Callie was right then at that moment, wondering if she was still alive, and praying like you wouldn’t believe.