A Perfect Heart

After the biggest snowfall of the season, we awoke....
It was the day that we would find out if HLHS would plague us again.

After cooking pancakes and bacon, Brian went outside to start shoveling the car out.  It was going to take forever, but I was not cancelling this appointment.  I would walk to Philly if I had to.  Finally, our neighbor came by and plowed us out. 

The drive up to the hospital was one that seemed familiar.  It was strangely similar to the drive up on the morning on 6/4/10.  The not knowing was the same, which caused an awkward silence. 

Upon arrival there was locating the floor again.  We have an issue with remembering if it is floor 5 or 6. We finally made it.  We completed the paperwork and insurance information and we waited.

The same tech who scanned Wyatt, the many times he had Echos, came out and took us back.  We went into a different room, thank goodness.  I laid on the table and took a very deep breath. 

Then the Echo began.  The baby looked great and it was moving around a lot.  The tech asked, "I know you don't know the gender because it is so early, but if I am able to tell, would you like to know?"  We both quickly looked at each other and at the same time said, "Yes!"

I few seconds later, the little femur bones were pointed out.  The tech counted, "one, two" then said, "and there is the appendage, you are having another little man." 

Brian choked back tears, I looked over at him while one tear trickled from my eye.  I couldn't believe it.  We were blessed with another little boy.  Then the news got even better...

After several minutes of silence, horrible thoughts began running fast through my mind.  Thoughts of how boys are more likely to have HLHS than girls, what if this baby has HLHS also, why does it seem that I only see three chambers? 

Finally, she spoke!  The tech said, "So far, everything looks perfect."  PERFECT.... The word rang in my ears.  We have a little boy and his heart looks perfect. 

That was it, the Echo was complete.  We were escorted out of the room and taken down to the same tiny room in the corner of the hall where we were told of Wyatt's condition.  We walked into the room and noticed the tissues were off the table this time.  I refused to sit in the same chair as I had with Wyatt.  I walked around the table and took a seat, while I starred at the photo of the children who were CHD survivors, the same photo I starred at after finding out Wyatt's heart was failing him. 

The doctor came in, the same one we had for Wyatt.  She had tears in her eyes.  She gave me a hug and we expressed how happy we were to see each other.  She briefly sat down and she smiled and said, "This baby has a perfect heart.  Everything looks great."  This was the same doctor who had to tell us that Wyatt didn't make it.  I am sure several thoughts were going through her mind.  But this time, it was good news.

Our smiles couldn't have gotten any bigger.  I felt like my smile was hanging off my face, it was definitely bigger than ear to ear.  We made our next appointment and we headed out.  We were speaking with a coordinator, the same one who we had with Wyatt, and all three of us were happy, smiling, and pleased. 

We got to the waiting room and opened the door to leave.  Quickly my smile was removed from my face.  What I saw was something I had prayed I would never see again.  A pregnant woman and her husband sat in the waiting room.  They looked at us and I noticed the tears streaming down their faces.  They just had a Fetal Echo and now they were sitting in the waiting room sobbing.  I wanted to go over and tell them, "I know."  For I know the pain, the heartache, the sadness.  But it didn't seem appropriate. 

Instead, Brian and I looked at each other, ensured our smiles were washed from our faces, and we remained silent until we were out of ear length from the other family. 

While walking down the hallways of the hospital, I recall saying, "It is so wonderful to have that test done and be able to leave this place."  On the way to the car we both breathed many sighs of relief, so many, that we began laughing about it.  The bricks, boulders, and cinder blocks had all been removed. 

On the way home, we both brought up the family in the waiting room.  We discussed understanding their pain.  We also discussed how different we had become.  We realized that no matter how perfect one child's heart can be, there will always be another child suffering from a CHD, something that so many others know nothing about. 

Sigh of Relief!

"There are two sighs of relief every night in the life of an opera manager.  The first comes when the curtain goes up.  The second sigh of relief comes when the final curtain goes down without any disaster, and one realizes, gratefully, that the miracle has happened again."  ~ Rudolf Bing

No, the opera is not my life, I don't care much about it, and I have never been to see a show.  However, this quotes seems to fit my life right now. 

Yesterday brought worry and scare, so much so, that I couldn't sleep last night.  I kept having dreams of being in the hospital and watching a monitor.  I would wake up, freak out, realize it was a dream, and go back to sleep.  I think I caught about four hours of sleep.

Today, the doctor called to follow up on the information provided to us yesterday about DiGeorge Syndrome.  It was wrong!

There was a post-it note placed over the right side of the report when it was faxed.  It covered up the two most important words, DOES NOT.  The doctor confirmed today that the report read, "This fetus DOES NOT have DiGeorge Syndrome."

The first curtain went up and there was a sigh of relief.  We can breathe better now. 

We still have many acts to go until we get to the final curtain.  Two fetal echos, two more ultrasounds, another round of blood work, and the delivery of our "Miracle Baby".  We are taking each step, one at a time, for that is all we can do after what we have been through in the past.

I continue to look forward to the day that the final curtain goes down, the day that we can look at our child and realize a miracle has happened, yet again!!!

Relapse of the Past??

Lying on the table and hearing the words, "Left ovarian cyst".  I told myself, it's okay, they don't seem to be worried. 

Still lying on the table, "Back in a few minutes, we need to meet with the doctor."  Oh my god, those were the same words used during the Fetal Echo with Wyatt.

Blood was taken and a brief walk to see the doctor.  Why did everyone look so scared?  Maybe that was just me.  No, they look scared.

Sitting there, waiting for the words.... Come on say them.  "Based on what we see today, everything looks okay, but we have to wait for all of the blood to come back and for the 16 week results."  That told me nothing. 

The amnio report of Wyatt was reviewed and my nightmare became reality.  "Your previous baby had DiGeorge Syndrome."  What???  Why didn't I know this?  How did I not know this????

"It could pass to this baby too, it depends on if you or your husband are carriers.  We need to do further testing."  Oh my god, are you serious?  I don't know if I can go through something like this again. 

"The chances are small, but they are there.  It is better to rule them out now."  Yes, I agree, the sooner the better.

We received our next steps, packed up our belongings, and took a deep breath. 

The journey has started again.... It just can't be a relapse of the past.

Happiness with Caution

A conversation took place yesterday between me and a friend.  It was a conversation that wasn't planned and was least expected.  Though the conversation started with the happiness of showing off my newest baby bump, it ended with me walking away thinking thoughts of unhappiness and frustration.

The conversation's turning point happened while I was discussing the hopeful gender of our miracle baby with a friend.  To be very honest, I could careless what we are having, boy or girl, either way the child will be loved just the same.  But there are times when I answer with a specific gender, yesterday was one of those times.  "A boy would be nice.  It would be nice to have a boy again."  And at that very moment, that actual second, the conversation went downhill like a ball rolling faster as it built up momentum. 

I understood what the friend was trying to get at and what she was meaning to say, but it was coming out all wrong.  It was alluded to that I didn't love this baby as much as Wyatt, that I wasn't connecting as much.  I have to say that this friend alluded so very wrong.  For the love is there, and the connection is too but the connection is just very different. 

I tried to explain, but she didn't understand. 

Try to explain grief to someone who didn't have to try forever to conceive a child.  Try to explain sadness to someone who didn't carry a baby for 29 weeks, then find out that the only surgery to help the child would probably take his life.  Try to explain pain to someone who never lost a child. 

I couldn't find the right words.  She was talking and I was thinking, more like pondering, for the right way to say what I needed her to understand.  But the words never came, I just couldn't formulate them correctly. 

While discussing my day with Brian, I stumbled upon what had happened.  It brought tears to my eyes while I explained the conversation to him.  I told him that I tried for the entire length of the conversation to find the right words to explain my situation, but that they never came. 

Today while reading another BLM's blog, Lori Does Maryland, I found the words.  The words were written by Lori, so I wanted to ensure that she received the credit.  The words were there listed in a paragraph of their own.  The words were:

"Grief doesn't end because amazing joy begins. They coexist and can really tear one up."

Those are the perfect words that say it all and mean so much.  Those are the words that can get the point across.  Just because a new life is forming doesn't mean that things are going to be the same as they were in the past.  For when joy exists without grief, it is amazing.  When grief exists without joy, it is heart wrenching.  But when grief exists with joy, it causes happiness with caution. 

So Grateful!

As many of you know, I make crochet blankets and donate them to the hospital where Wyatt was delivered.  We are getting ready to go back up to the hospital on 1/27 for an echo on our "miracle baby".  I am working to finish another yellow blanket to take up on 1/27. 

But last night, I received something so wonderful.  I received a plastic bin filled with yarn and crochet needles.  I couldn't believe how much yarn was in that bin.  The materials came from Brian's grandmother, as she cannot use the materials right now. 

I can't wait to finish the yellow blanket so I can begin to use the yarn I have been given to make many other beautiful blankets.  I am even going to try my hand at making a few baby hats, you know the cute ones with animal ears and such. 

I am so grateful for every piece of yarn in that bin and I will ensure it all goes to a great cause!!! 

"How can it be?"

I had a long talk with God today.  The talk was very one sided, as normal.  This talk took place after receiving a text from a friend, a friend who has been trying to become pregnant since before I conceived Wyatt.  Her story is very similar to mine, so much so, it was like we were meant to meet so we could provide guidance to one another. 

Over the past few weeks, we enjoyed being pregnant together, finally.  Her pregnancy was complicated with several concerns, but with guidance and friendship, we still discussed our pregnancy and enjoyed the time together. 

Today, that all changed.  The text came through and I was in tears.  I was sitting at my desk with flashbacks racing through my mind, fast flashbacks of Wyatt's pregnancy, the entire duration of his pregnancy.  At one point, I placed my cell phone down on the desk and put my head next to it.  I remember starring at the side of the phone and yelling at God in my head.  "How can it be?"

The text said, "No heartbeat.  Baby is measuring smaller and is dissolving.  At surgery center now."  She was about to have a D and C to remove the child she had be trying to conceive for years.  All I could think of was how unfair life can be to those so deserving. 

After swallowing the lump in my throat and wiping my eyes, I decided I needed to step away.  I went to the bathroom and sat in the stall.  While sitting there, I had my one sided conversation with God.  I tried to explain that I felt that deserving people always seemed to have to go through tough times.  I discussed how there are many others who hurt their babies and asked why not them?  I asked why her, someone whose story was so much like mine.  And I asked why my friend? 

The conversation provided no answers, no sympathy, and no emotion from the other side.  I returned to my desk and looked at my phone again.  I saw the message again and realized, our friendship just became 100% different. 

Different for many reasons.  We will need to be there for each, more now than before.  Her story is now even more like mine.  She understands more than she did before.  We both have a void in our hearts that will never be filled. 

I have asked myself all day what I could do for her.  How could it be so hard to figure out what do to for her, I was there in her shoes, experiencing the same loss.  But the only thing I can think to provide her is support and friendship.  That is all I wanted during my time of loss.  The flowers were nice and the cards were great to receive.  But having someone just to talk to about my child, that meant the most to me.  That is what I plan to give to her, someone to talk to. 

Please keep my friend in your thoughts and prayers, please. 

A Message from a Child

Today I received a special message, the best one ever, it came over FB.  You see, I have a little niece, Shaelyn, who is so very close with Wyatt.  She never had a chance to meet him, but she has been told all about him.  She prays for him every night and she makes sure that she has "her own" pictures of him.  Since losing Wyatt, Shaelyn has been my precious guide to him.  They say that children know more than what we think and that they sometimes "see" more than we adults do.  After losing Wyatt, Shaelyn quickly proved this.  She came to the beach to visit me and she told me then that she could see Wyatt while crossing over the bridge to get to the beach.  (Like she made the connection to the sky and Heaven)

There have been many other stories since but none that touched my heart like today's did.  This was the FB message I received today from my sister in law:

"Ahhh my Megan... I always want to tell u sooo much .. I just never want to upset you ever....but then I thought and realized that not telling you is worse especially after I saw your last blog.   I promised myself that I would try to tell you everything. :)  First, I want to let you know that not a day, barely an hour, goes by that I don't pass by a picture of Wyatt or think of him.  And Shaelyn talks about him a lot!!  When people ask her how many cousins she has or say "wow you have so many cousins, do you even know all their names..." she starts to list them "Justin, Aaliyah........" and somewhere in between she always says "and I have a special baby cousin Wyatt who lives in heaven and I miss him....."  Or she was playing football one day with my sister and her friend and she caught the ball and said "Aunt Cara do you think baby Wyatt is proud of me for being good at football?"  A few days before Christmas, when I told her we were going to donate the money to Wyatt's Wishes as his Christmas present, she was happy but then asked if Santa could get presents to him in heaven.  I tried to answer honestly forgetting it's Shaelyn that I'm talking to and she's so sensitive about Wyatt.  I said, "well I don't know Shaelyn, I don't think so.."  It broke my heart to see her bottom lip poke out and she cried.  "We" cried for awhile.  She was so mad and upset because she was sure Wyatt was being a good boy.  So finally, I told her that Santa could go up there.  She is always thinking of him.  Christmas Eve, we came home and I handed her the picture frame you gave her so she could put it in her room on her dresser.  She flipped out!! (You know with her Shaelyn attitude)  "Mom, I am putting Wyatt's pictue right in between the fireplace and Christmas tree so Santa sees him and does not forget to go give Wyatt his presents. 
And that is where his picture stayed until morning when she picked it up and said "welp, I know Santa had to see it" and she put it in her room.  She always says she can build a rocket ship and visit Wyatt in heaven but I have to really sit down and tell her that she can absolutely not go there and that once you go there you can never come back.  That's when she gets upset again and realizes that her pictures are what she has.  And not to mention the fact that she loves going over bridges because she knows she is close to baby Wyatt.  I really hope you wanted me to share our Wyatt times with you. ;)   I just wanted you to know more than anything, that he is with us everyday and there will never be a day he is not with us, for that I am sure."

 

So, that was my wonderful message I received today.  Something so touching, so very precious, and so meaningful.  The words which came from a four year old, a very special four year old.  A four year old who loves her cousin, the one she never got to meet, and who thinks of him often and ensures he lives on. 

 

So I leave you with a quote that always reminds me of little Shaelyn and baby Wyatt.

 

"Grown-ups never understand anything for themselves, and it is tiresome for children to be always and forever explaining things to them."  ~Saint-Exupéry, The Little Prince, 1943

 

Forever Changed

As I sit and look out of my living room window at the peacefulness of the snow falling lightly this morning, I can't help but wonder if my life will ever become peaceful again.  One never appreciates what they have until it is gone.  I have learned this several times over the past seven months. 

Funny how when we are children we wish we were adults, then when we are adults we wish just the opposite.  It seems to be this way for a lot in our lives.  We wish we could be rich, but then it only causes other issues.  We want a bigger house or a nicer car but that brings larger payments of money that we don't have.  We always think the grass is greener on a different side, but that is never the case. 

I had a melt down last night.  One the caused the "peacefulness" of the past two months to end abruptly.  Yesterday was seven month since I saw my son for the first time.  There was not one mention of his name from anyone, minus words on Facebook.  Understanding that it was the seventh month mark and not a huge milestone, I didn't expect much, but to me it was still the sixth, and no one bothered to mention his name.   I feared this day more than any.  The day his name would go unsaid. 

I have dealt with the pain of learning the perfect pregnancy was coming to a wrongful end.  I have lived through the grief of losing my child.  I survived many months of agony, as special dates such as his baby shower, his due date, the first holiday he was to be with us, the six month mark, and even Christmas all came and passed without him. 

Yesterday, however, hurt.  It was another date that should have been remembered.  One that meant something to me.  One that was spent thinking of how there are only five months until his one year. To me it was like I had hit the downhill side of things.  And as I said before, the grass isn't greener on a different side.

Yesterday, I came across a post a friend had found and it was perfect.  Perfect timing, the wording was just right, and it said everything that it needed to say... Here it is:

How Grief Feels

by Heather on January 5, 2011

You have a lump in your throat.

You’re nauseous.

The wind is knocked out of you.

Every inch of your body hurts, even your hair.

Yet you feel like your limbs aren’t attached to your torso.

All you want to do is sleep, but closing your eyes brings horrible images.

You scream, but your voice is gone.

Crying hurts.

Breathing hurts.

Living hurts.

Your head is splitting, and your ears are ringing.

There are bruises on your knees from being knocked to the ground.

You carry 1,000 pounds on your shoulders 24 hours a day.

You’re exhausted.

People speak around you, but you feel like you’re in a bubble.

There is always a sense of dread.

Your heart is broken.

You feel all of this all the time.

And yet…

This is only the tip of how grief feels.

This post reminded me that I have passed the tip of grief.  I am somewhere closer to the middle now, the point where I can provide my story to others, look back and see improvement, and begin to focus on a new little life who is currently developing, thanks to little Wyatt.  Though I am doing better than what I was while I was standing (well more like kneeling) at the tip of grief, I can say that the grass still isn't greener.  Just like life, grief is no different.  The grass isn't and will never be greener on a different side.  How could it be, when my son still isn't here with me. 

So, I suppose I can answer my very own question.  No, life will never be as peaceful as it was before.  I will always feel that lump in my throat, the sense of dread when I think of the fact that he is gone, and the broken heart that will be carried forever.  Just like when one realizes the grass is not greener, I have realized that my life will never be the same.  I am forever changed.