Monday, April 30, 2012

Meet Eva Joy.

Time to do another angel story. I would like for you to meet Eva Joy. Eva was a heart baby just like Noah. Eva also had a cleft like Noah. So I feel a connection with Eva's mom, since our babies had so much in common.
Look how adorable Eva is. And look at those eyes. Just gorgeous.

If you remember the last angel baby I featured, which was Jena. Here's her story if you don't remember. But this is Jena's younger sister. So heart heartbreaking that this family had to loose two kids.


When Blake was 15 months old and after 9 months of trying for another baby, we became pregnant again! As with my pregnancy with Blake, my OB placed another cervical stitch in my cervix to prevent my incompetent cervix from opening prematurely again. It was at the big 20 week ultrasound that we once again were told horrible news about our baby! We were told that we were having a girl which we were thrilled about. We thought, finally we could have a baby girl in our home and not in Heaven. My cervix was nice and closed and long so premature labor would not be a problem…It was worse! Our baby girl on ultrasound looked as if she had a severe heart anomaly!  The left side of her heart was severely undersized. We were told to get genetic testing done and to seek out further tests to check on our girl’s heart. We went to the University of Michigan, which is supposed to be a center of excellence for Pediatric Cardiology. We were crushed! It was confirmed that out daughter had what is one of the most complex heart defects called, Hypoplastic Left Heart Syndrome. It was also confirmed that our daughter had a very rare genetic deletion on her 4th chromosome. There was little information out there on this rare deletion except an array of heart defects and clefting in the lip and palate. Our girl, who we decided we would name Eva Joy, had both…a severe cleft lip/palate and a very severe heart defect. We were given the option to terminate or to continue with the pregnancy. It was something that was so hard for us…

We called on Pastor Greg to sit with us and to pray. It was an easy decision for us to continue with the pregnancy as there are many babies out in the world with Hypoplastic Left Heart Syndrome who are alive and thriving. We knew it would be a tough road for our baby girl. She was to face three open heart surgeries in her first two years for her heart alone. She would also face the cleft lip/palate surgeries as well.

            At 31 weeks into the pregnancy, I went into preterm labor. I was put on hospital bed rest at my local hospital and was to be transported to the University of Michigan at 36 weeks to deliver her there so she can be ready for her first open heart surgery. After being away from my Brian and Blake for over a month in the hospital, the day arrived to be transported to University of Michigan to have a Cesarean Section to deliver our Eva Joy. Brian and I were so nervous, but we were ready to do whatever it took to get our baby girl safe and healthy. We knew it was going to be a fight for all of us…we were ready! On May 17, 2011 our Eva Joy was born weighing in at 5 pounds 3 ounces. For a heart baby she gave a good cry when they lifted her out of me! She was beautiful! She had the biggest beautiful blue eyes I have EVER seen. A true gift!

            On Eva’s 3rd day of life she underwent her first open heart surgery. She made it through just fine! In fact, Eva’s only issue was that feeding difficulties and she was very slow to grow. For four weeks Brian Blake and I stayed at the local Ronald Mc Donald House because our home was over an hour away. I was pretty much healed from my C section and Brian had to go back to work to continue to support our family. It was hard to be split up, but it needed to be done. Brian stayed with Eva all week and went to and from work from there. I stayed with Blake all week but on the weekends I was with our Eva. It was so hard to have a split family but we were starting to get used to it. We were told that Eva needed to have a procedure done in the Cath lab before she could come home. They wanted to check a few things with the catheter and that it was a simple procedure. I declined the procedure for Eva. I felt it was useless to go in and put her under anesthesia and “poke” around just to “check on things”. I had this bad feeling! Again, my motherly instincts kicked in and said,  “no, don’t do it”…It was Thursday, July 28th, 2011. I told Eva’s Cardiologist that I refuse the procedure and that I was going to drive an hour to go home to be with my Blake and Brian for the day. Eva was stable and all was well.

            After an hour drive home, I thought about the hard fight that Eva had already put up in her short life and about how much harder she would have to continue to fight once we got her home. She had been in the hospital almost 100 days and we were ready to bring her home! We were ready to continue to do whatever it took to get Eva healthy and well. Once I got home, Brian and I got a call from Eva’s Cardiologist saying that they still wanted to go into the Cath lab to check on some pressure in her stent that was placed in her heart.

They said the chances of anything significantly wrong happening was very low. We were told; just to stay home and that there was no need to come back to the hospital and that they would take her down to the Cath lab for the procedure. I told Brian that I didn’t have a good feeling and that she was doing so well that we should just let it be, however Brian and I had faith in them that they would help Eva to get home soon and that they just needed to do this one last procedure. Brian gave consent over the phone for the procedure. I still felt sick about it. I told Brian that we needed to go to the hospital to be there for her when she comes out of the procedure. The entire time I had that nagging awful feeling that something wasn’t right. When we got to the hospital, Eva was already in the Cath lab, so I didn’t get the chance to kiss her or hold her. This saddened me. An hour into the procedure Eva went into Cardiac Arrest on the Cath lab table and they couldn’t bring her back! I fell to my knees when I saw them pounding on her little lifeless chest. I started to sob and scream, “Eva come back”…She was gone. I held her two month old blue body in my arms and I was broken. I was angry at the Cardiology team; I felt like they talked us into this “unnecessary” procedure, I was mad at the world. I was so angry at God for allowing another one of my babies to die especially after how hard and long we all fought for Eva. I felt like dying myself. I didn’t care if I lived any longer.

            Again, we had to say good-bye to another one of our babies. As I write this letter, it is, April 2012…  almost 10 months since our Eva Joy died and I am still angry with God. I am grieving hard and will be for a long time. Planning her funeral was one of the hardest things I have ever had to do in my life. Her Nursery and clothing was taken down and packed away…Our hearts are still broken and we are still so lost. My Brian and I have yet more questions for God…Why did you allow this? Why did you allow us to get to know and love our baby for two months and then allow her to die? What justifies a baby to die before her parents? What justifies a family to lose TWO babies? We hope one day we will see our baby girls again. We beg for signs that they are with us in some form. I know I wonder how Heaven is and some days I wonder if there really IS a Heaven. So many questions…So much pain. Our 2 year old Blake keeps us going. There are still so many gloomy tearful days. We grasp at the notion that we will see them again one day face to face…We try not to lose faith…That is one thing we have learned in all of this and that is… walking by faith and not sight is one of the hardest things to do as a Christians… We continue to live and trust and to have faith…without faith what else have we got?

            If you are reading this because you have recently lost a baby through miscarriage, stillbirth or infant death please know that you are NOT alone…This an awful pain, but there are others who belong to this horrible club…God Bless you and Take Care


Friday, April 27, 2012

Little steps

It's amazing how much stuff you get ready when you are expecting a little bundle of joy. When we were waiting for Lucas to arrive back in 2005, we had so much stuff to get. Clothes, bed, changing table and the list goes on. We had a couple of baby showers which helped us out tremendously. We also got some hand me down items (love them). When we were waiting for Noah to arrive we again had to get a ton of stuff ready. This time we had kept everything from Lucas. I didn't really go out and buy a whole lot of stuff. I found a few cute outfits on clearance, that I just couldn't resist buying. And then I bought the "coming home" outfit from the hospital. I actually bought two. Same outfit, but just two different just depended on how big he was when he was born. We were so positive that, just like the cardiologist told us, he would be home within a week or so from the hospital. We had dug out all the little baby clothes. Washed it, and put it in the closet. Dwayne found the little bassinet he would sleep in when he would be released from the hospital.

Noah wore two outfits his whole ten weeks of life. He always had a blanket with him. It never left him any longer than a few hours. (That's when I had to take it home to wash it. I was the day shift and Dwayne the evening shift). He also wore a few socks, but often the nurses took them off of him. So I didn't bother with that too much. Maybe I should have, gosh...there are so many things I wished I would have. But my mind was a fog while he was hospitalized. Things that I would have done now, now that I can think clearer, but I just couldn't do when he was alive.


{This is Noah with his beloved blanket. A dear friend of mine helped me with embroidering it. This picture is actually taken when he was on ECMO. I haven't shared pictures of him on ECMO. But in this picture you can't see his open chest. Hidden nicely with his blanket.}

And then he died. So many things had to be put away. But guess what?? I haven't even done half of it. The first thing I did was put away the breast pump. My little friend who I was so close with for twelve weeks or so). Next thing I did was empty my hospital bag. This was the bag that I carried back and forth every day to Children's hospital. In there I had my video camera, my camera, crayons, coloring books, my knitting. (I started knitting a hat for him that I was gonna use for his newborn pictures. I began this project when I had to take my three hour glucose test. The hat is still not done). I had other reading material in there. Topics about his heart, procedures, medical treatments etc. Dwayne and I did a lot of reading, so when we talked to the doctors we were a little more educated. Just a simple thing as how the human heart works, I had no clue. I had no knowledge about the chambers, oxygenated blood etc. before Noah's condition. The bag was hard to empty. I think I did that in the fall, about two months after his death, and boy was that hard. I remember I cried so hard that I curled up in a ball on my bed. There was so many memories in this bag.

Next thing, which I just did in 2012 was removing the maternity clothes from my closet. That wasn't too bad. I handled that ok. But that has been it. His clothes is still in the closet. We don't need the room, so there isn't any rush removing it. I'm sure one day, out of the blue, I'll be ready and want to box it up.

Today I took another little step. I took out my earrings. You are probably thinking "your earrings?". Yes. I've worn the same earrings for a whole year new. On Easter Sunday 2011 I put in a gold pair of earrings that Dwayne got me many years ago. And the evening on Easter is when my water broke, so the earrings were still in. When Noah got transferred to Children's I decided to keep the earrings in until he was released. I don't know if I thought they brought good luck, but for some reason I felt supersticious and couldn't take them out. After he passed away I decided that I would keep them in the remainder of 2012. I kinda wanted to wrap up the year, Noah's year, with the earrings in. January came and my earrings were still in. I thought about changing them but just never did. Not until today. I was getting ready for Lucas's field trip to the zoo. I had taken the day off work so I could tag along. I had gotten Lucas on the bus and I had an hour or so before I had to meet him and his class at the zoo. And out of no where a little voice said to me..."change the earrings" and I did! I thought the day I was gonna change them out might be a little sad. But no. I was ready. steps...and who cares how long it will take? It will get done...and in my pace.

Wednesday, April 25, 2012

Wordless Wednesday (Kinda)

Happy birthday to my sweet boy in heaven. We miss you more than words can say. Photobucket (This is Lucas on his first birthday)

Wednesday, April 18, 2012

Monday, April 16, 2012

What 7 is like.

I asked Lucas a few question since we have to figure out what seven is all about.

Favorite tv show: Regular show, Adventure time, MAD, Spongebob,

Favorite food: Pizza, pancakes, bread with butter.

Favorite place: BounceU, TGI Fridays, Monkey Joes

Favorite book: Bone, Dr. Seuss.

Favorite vacation: Florida.

Favorite snack: M&M's.

Favorite drink: Ice cold water. (He loves to eat the ice cubes).

Lucas is doing great in school. He's starting to spell harder words like checking, telling etc. He has also in the last month started to read more on his own. His favorite book right now is the "Bone" series. I love listening to him sounding out the words.
He loves to write his own cartoon books. Some of the titles have been: "The french toast monsters", "Evil eggs", "Evil pancakes". (Hmmmm...I'm suspecting a lot of these titles are being pondered about at break fast).
He even mentioned that he will be writer when he grows up (if he in his dreams will come up with some good ideas), make movies. (Next Brad Pitt??) or a carpenter :-) (He has been helping his Dad a lot with our projects around the house).

He is signed up to play his first team sport. He will start playing soccer at the end of the month. I'm very excited to watch that. It should be fun for him, because he LOVES to run. He often runs laps in the yard.

He still hasn't lost any teeth. We are still waiting for the tooth fairy.

Here's a picture of him taken at BounceU where we had his party. BounceU is a place with a bunch of inflatables for the kids to jump around on. Perfect for wearing out 7 year old boys.


Sunday, April 15, 2012

Jena's story!

I met Jena's mom through an online support group. Actually I've met so many people through the internet, who has been an incredible support.
Jena is the first angel I'm sharing who was stillborn. Such a sad story that should have had a happy ending.
Jena will be forever missed!

Jena Rose Pepper

I was 20 weeks pregnant and just coming from the OB/Gyn office for the big ultrasound that told us we were having a girl! We were so excited! I always wanted a little girl to dress up with pretty pink dresses and bows…The ultra sound technician mentioned that my cervical length was shortening which meant the weight of the baby was causing the opening of my cervix to painlessly dilate. I was diagnosed with an incompetent cervix. To effectively remedy the situation, a cervical stitch would need to be surgically placed to tie the cervix together. I had a horrible feeling that something “just wasn’t right”…My OB was dead set against putting the stitch in and said that he would just watch the cervical length by ultrasound. I was so angry! Here I was, half way through my pregnancy and I just knew that something was wrong. I had this horrible feeling that my cervix would give way and I would deliver my baby girl prematurely and that she would die!
That week I felt tired and out of sorts. I remember it so vividly. I had that haunting feeling that only a Mother could have, knowing that something bad was going to happen. I asked my husband Brian to go into work late because I just didn’t feel well. He stayed home with me that morning and stayed in bed with me. He got up to get ready for work. I kissed him goodbye and as he walked towards the door, I walked to the bathroom. I heard Brian shut the door and I climbed back in bed. As soon as I climbed back into bed a very large “swoosh” of water poured out of me! I thought, “no way could this just be urine”. I knew what had happened! My cervix gave way and I was painlessly starting labor…My water had broke!
I was only 20 weeks! It was too early. If I had Jena now she would surely die! I started screaming so loud. Brian heard me out in the garage and came rushing in. I called my OB office and told them trying what had happened trying to hold back the screams. We rushed to labor and delivery triage and I was put in a labor and delivery room. It was confirmed that my water had broke. I was placed on heavy antibiotics because once an amniotic sac breaks risk of infection runs high. We could do nothing. We waited!
Twenty long days passed and we thought we were in the clear. We thought we could get Jena big enough to survive on the outside. I will never forget how scared I was. I was so angry at my OB! If he had only given me the cervical stitch, my baby would be safe inside my womb growing for many more weeks. On March 1, 2008 at 22 weeks I went into active labor after sitting in the hospital for 20 long days trying to prevent infection. I begged God to save her! I pleaded, “ God please, I stayed in the hospital bed, and I even used the bed pan, please acknowledge this…please know that I want her more than anything”…The contractions were so painful. I couldn’t help but scream. It was the worst pain I have ever felt.
The pain out of nowhere stopped. The OB then gave me an ultrasound. No heartbeat was found! Jena pressed against her umbilical cord and because there was no amniotic fluid, she pressed against her lifeline. Jena Rose was delivered “still” on that cold and gray morning.
I remember wanting to die. Holding my baby dead was the most horrid thing! I felt as if everything was surreal. The next morning, Brian and I drove away from the hospital in silence. We went home to a quiet house. No joy of a new baby…Nothing! I stayed in bed for weeks as my breast milk came in and sobbed. I felt so alone. I thought that this couldn’t possibly happen to anyone else. I was angry. I hated life. I hated God! Why did he allow this to happen? I someday hope I will find out. I have so many questions for God. I just don’t understand why so many women who don’t necessarily “want” babies get them and why there are some women like me, who walk away with nothing…
Six months later after a very severe bout of depression. I became pregnant again. This time, my OB placed a cervical stitch and my baby boy stayed inside growing! It was a nerve wracking pregnancy, but Blake Matthew Pepper was born healthy on July 23, 2009! I can’t imagine my life without him! I miss my Jena Rose everyday and she will always be part of my family. I only hope to be able to see her again one day! I will never forget her EVER!

There is no foot so small that it cannot leave an imprint on this world

Wednesday, April 11, 2012

Monday, April 09, 2012

Nelyn's story.

Meet sweet, sweet Nelyn. I've known Nelyn for quite some time. I met Nelyn's momma on an online message board when I was pregnant with Lucas (who is now seven), and she was pregnant with her beautiful daughter. When we "met" back in 2004 I remember hearing about Nelyn. Nelyn was only 18 days old when he died. He was born perfectly healthy. A beautiful baby boy. Nelyn died of whooping cough ~ pertussis. I never understood her pain until I went through the pain of having a child die.
Before Nelyn was born, Nelyn's mom and dad had two teenagers. They had for a time wanted a third and Nelyn had blessed their family. The family now consists of five children....four on earth and one in heaven. Nelyn is so missed. I know that even though some time has passed since Nelyn's birth and death, their family will NEVER be complete. They will always miss their second son.
Below are a couple of news articles. Please, please read them. It's a story of an beautiful angel and I believe his work is not done here on earth. He continues to educate people. He educated me! After I had given birth to Noah, I got a booster shot to protect Noah from wooping cough. Thanks to Nelyn I now know. I now know how dangerous whooping cough is for small infants. Please get a booster shot, even if you don't have small infants in your household, but you could be that stranger at the book store who could protect another pregnant woman like Nelyn's momma.

Click here to read a news article about Nelyn.

And here is a video of Nelyn's momma talking about her sweet angel.

Nelyn just turned 8 years old on 4/7/12. Happy birthday, big guy!


Monday, April 02, 2012

Charlotte's story!

Meet sweet, precious angel Charlotte. Look at those eyelashes? Don't they just make her sooo adorable??? I sure can keep looking into her eyes and everytime it makes me smile.

Charlotte is a heart angel. I met her mom through a private group on facebook for heart angel mommies. She posted a link to her blog,  and ever since then I've been following this sweet family. I really wanted Charlotte's story be a part of my angel project, and I'm SO thrilled that her mom said YES!

I know you will fall in love with little miss Charley after reading about her sweet, much too short, little life.


The past two and a half year of my life have been defined by a series of dates—dates that will forever and always stand out in my memory whether I want them to or not. Some of them I cling to while others I wish could be permanently erased from the calendar year. Good or bad, these dates tell our story…
September 2009:  The day that I found out that I was pregnant. 
My husband Matt and I had just started to talk about trying to have a baby in July, so after only 2 months of trying we were thrilled to learn that we were going to be parents!  I remember nervously taking the pregnancy test that morning while Matt unknowingly watched tv on the couch.  I couldn’t stop shaking when I saw those two pink lines show up in the little window.  I had always imagined myself coming up with some elaborately creative way to let Matt know that we were expecting, but in that moment all creativity left me and I walked dumbfounded into the living room and held up the test.  I don’t think I said a word…I just remember hugging and smiling and the feeling of my heart beating 1,000 times per minute.  I was going to be a mommy!
January 18, 2010:  The ultrasound that changed our lives forever.
Like most expectant parents, Matt and I had been anxiously awaiting our ultrasound and couldn’t wait to get a peak at the little one that was growing inside of me.  I went to that appointment with the assumption that they would say everything was wonderful, tell us we were having a little boy/girl and then send us on our way.  As we sat there staring in awe at the grainy images of our baby, we didn’t pick up on anything concerning.  It was our first baby…our first ultrasound.  We didn’t know that the events taking place around us were anything other than normal.  Not until we got those sympathetic eyes from the doctor and ultrasound tech did it all start to click.  We found out that we were having a baby GIRL that day, but we also learned that there was “potentially” something very wrong with her little heart.   They wanted us to see a pediatric cardiologist the next day.
January 19, 2010:  Confirmation
Quite honestly, the day of our cardiology appointment is a total blur.   We were still holding on to the hope that the inability to see all 4 chambers day before was just due to the baby’s positioning…but I think deep down inside we were both bracing ourselves for bad news.  I remember laying in a dimmed room with twinkling fiber optic stars on the ceiling (a room that over the next year would become VERY familiar to us) as the sonographer and Dr. Sami scrutinized over the images of our baby’s heart.  When the lights came back up, Matt and I sat there holding hands as we were shown a graphic of a normal heart.  Then Dr. Sami started making edits to show us what was “wrong” with our baby’s.  I think that heard maybe 10% of what he told us that day… 
“Pulmonary atresia with intact ventricular septum…Hypoplastic right ventricle.” 
“Surgery required within days after birth followed by more, which still won’t make her heart normal.”
Like I said…it’s all a blur.  The tears were unstoppable.  We cried until the point of exhaustion and then cried some more.  It hurts my heart just thinking about that day and the ones that followed as we tried to comprehend what this crazy little heart meant for our baby girl. 
May 14, 2010:  Welcome to the World, Charlotte Delene Ritchie
In true Charlotte form, our little girl decided to take matters into her own hands and came into this world 3 weeks early via emergency c-section. From the first time I saw her beautiful, squishy little face I was in love.  All of my worries and fears about the days to come temporarily melted away as I soaked in every detail.  Then in the blink of an eye she was whisked away to the NICU so that they could stabilize her and start the medication that would be her lifeline until surgery time.
May 21 and 27, 2010:  First and second surgeries
In the first 2 weeks of her life, we handed Charlotte over to a team of surgeons, cardiologists, anesthesiologists and nurses on 2 separate occasions.  We KNEW in advance that we would have to do this, but I don’t think that any amount of time can really prepare you for what it actually means.  We knew that this team was going to cut her chest open and stop her heart from beating in an attempt to save her life.  We knew that the next time we would see her that she would have a tube down her throat to help her breathe, drains and wires coming out of her chest and IV lines occupying nearly all of her extremities.  We knew that not all kiddos pull through these surgeries.  And as painful as that all sounded, we also knew that we had no other choice if we wanted to give little Charlotte a fighting chance at life.  The days were long and agonizing, but each time our little girl amazed us all.

June 10, 2010:  Home Sweet Home
Talk about a little ROCKSTAR!  Just 4 weeks, 2 heart caths and 2 heart surgeries later, our little girl came home for the very first time.  It was something we always feared would ever happen. But Charlotte was a fighter and showed us from the very start that she was strong!  We spent the next 7 months at home watching our little girl grow and her personality develop before we had to go back for surgeries #3 and #4 in January 2011…and even then we were home in only 10 days.  We celebrated her 1st birthday a few months later and were preparing ourselves for a surgery-free summer at home with our happy little girl.

May 31, 2011:  The day we never could have anticipated
Sigh....I don't even know where to begin. 
It was a perfectly normal day. I had taken the morning off of work so that I could take Charlotte to an appointment for a lung scan at the hospital. Her hemoglobin had been climbing over the previous month, and since her heart looked good on her echo they wanted to rule out any pulmonary issues.  It was supposed to be an in and out an IV, take some pictures, go on with our day as usual. 
It turned out to be anything but. 
My husband met me at the hospital and we made our way up to peds to get stared.  Charlotte was a trooper as always! Yes, there were tears along the way, but hospitals and procedures and all of the machines are pretty scary, especially after everything we had put her through!  After all of the testing was completed, the 3 of us gathered our things and headed for the elevators. That's when everything changed. Something with Charlotte just wasn’t “right” and she kept trying to squirm out of my arms. I knew something was wrong and we immediately ran her back to the area where her scan had taken place. 
I heard a rapid response called overhead.   Then a code blue. 
I just remember going numb...sitting off to the side unable to breath as they frantically worked on our little girl.  At one point I remember naively thinking that they would bring her over to us, say she had improved, and send us on our way....but as the minutes continued to pass, I knew.   I knew, but I couldn't comprehend. She was gone. 
The last time I held my little girl in my arms she was gone. I remember just sitting in the wheelchair they brought for me and staring at her perfect little features as she lay motionless in my arms.  A chaplain came. We prayed. He blessed her.  We walked out as 2 instead of 3.
Our lives were turned upside down that day. There is no use in trying to explain how it will never understand until you've walked that path (and I hope you never do). The grief is deeper than anything you've ever imagined; darker than you could ever comprehend.   Ten months later there are still days when it takes all of my strength to drag myself out of bed…and I think that’s ok.  There is no timeline on grief and I honestly think I’ll have those days for the rest of my life.  
Charlotte is the first thing that I think about every morning and her face is the last image that occupies my brain before I drift off to sleep at night.  In her short 1 year of life she managed to teach us a whole lifetime’s worth of lessons.  She taught us STRENGTH, TRUE LOVE, and COMPASSION and inspired us to be better people.  I will never be the same person that I was back in September 2009 when I found out that I was going to be a mommy.  I will never be the same person that I was before the day of that crazy ultrasound.  I will never be the same person that I was before seeing my Charlotte’s face for the first…or last…time.  I will never be the same person---I am better.  And it’s all because of a little girl named Charlotte.
We love you Charley Bear.  Beyond words or explanation.  More and more each day.