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.

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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 4^th 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 3^rd 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 28^th, 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

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!
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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

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!

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.

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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 thing...place 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 feels...you 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.
 
 

Kash's story

Meet Kash. I've never met Kash, but I feel like I know him just looking at the pictures of him and reading the beautiful story Kash's mom wrote about him.
I met Kash's mom at St. Louis Children's hospital back in September 2011 when we both went to a memorial service. At the service they were honoring Noah and Kash among other kids. Kash's mom came up to me afterwards, because after sharing Noah's story she could relate to a lot of things I had told. I'm so glad she did. I don't know if I would have. I think we have a pretty special friendship only knowing each other for a few months.
Kash was such a strong little boy, and I absolutely love that he got to experience being outside in a gorgeous garden with his parents before taking his final breath. That is something I wished we could have done with Noah. That garden on the rooftop of Children's hospital is an amazing getaway from all the machines and where you can just soak in the beautiful landscaping they have created there. I miss that place.

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I can't even describe the fulfillment that was felt knowing that our beautiful son was coming. It was just the most perfect thing in our lives, so incredibly meant to be. Getting pregnant with my little boy was my rainbow after a PCOS diagnosis in early 2010. I had been so sick for so many months, then months of hormone therapies & cleaning up my on-the-go lifestyle as a busy teacher & mother to 4 already. I ate well, I took my vitamins, I monitored cycles, I laid & prayed so many nights, & then there was that perfect morning knowing I was pregnant. This baby was a key to my healing & knowing I would be okay.  I knew his name was Kash before I knew he even existed. I had defeated my PCOS diagnosis.

It was in November of 2010 that a nurse called letting me know that my Quad Screen came back positive for elevated AFP, which I was told meant my baby had neural tube defects. Total agony & devastation. I signed on with a neonatal maternal specialist from Champaign-Urbana & started months of in-depth blood panels & sonograms. Each visit only brought good news, always showing no signs of any defects, but the specialist became concerned that Kash would be too small & wanted to keep me on close monitoring for the duration of the pregnancy. We had defeated the neural tube defects scare.

On  Monday, April 11^th, I made the last OB trip before my April 13^th c-section. In a fifth pregnancy of nagging false-labor, it was a shock to be told I was definitely in labor for the first time ever in my life. I made calls letting everyone know Kash wanted to come & I headed to the hospital, with 3-year-old daughter Kendall in tow. At 3:15 pm Kash McKinley Barnfield was born, weighing a hefty 8lbs & 21in long, a week & a half before his April 21^st due date. We defeated the low-birth weight scare.

Kash immediately showed signs of troubled breathing & was whisked away to the Level II Nursery. He was monitored through the night to watch his O2 saturation & blood gas levels. As his numbers stayed low, we began to worry. It was 5 am the next morning when I had a nurse help me up & wheel me in to see my little boy. He was so big & beautiful, & he was here, & everything that we had worried about for months seemed to be okay. They had thought that he had ingested some fluid during the section & had wet lungs. I couldn't touch him, but watched him sleeping, so jittery & breathing so hard. He was going to be flown to St. Louis Children's Hospital “just to be on the side of caution”, but that he would be right back home in a day or two.

It was Tuesday morning & they placed Kash in my arms for a few moments before he left for SLCH. He looked up at me with his beautiful, big brown eyes & he felt so good in my arms after months of worry.

My husband John went to SLCH to meet Kash & be with him, as I spent the next 24 hours getting up & on my feet after surgery. John sent picture messages & text updates. He talked about the nurses calling Kash a strong little bunny because he was so quick & jumpy & nearly tried to hop off the table. She said she had never been beat up by a baby before as he kicked & fought her, so full of strength & life. He had to be sedated & intubated for treatments, but was responding well.

I arrived Wednesday to join my strong bunny, Kash. I did not know how long I would stay at SLCH, but that I was not going to leave until my little boy was better. I met his extensive team of doctors & he was finally given his rightful diagnosis, Persistent Pulmonary Hypertension of the Newborn. It's a common & very treatable condition occurring when a baby's lung pressure does not transition to breathing in the world after being in the womb. The pressure in the lungs stays high making it difficult for oxygen to saturate the lungs & travel through the body systems. The medical team said things looked good & we had lots of ground to go if we needed, but that it wouldn't be necessary. I pointed out the blue, plush bunny that was placed in Kash's room by hospital volunteers. We would then take that bunny & place it in his arm when we left to go down the hall to sleep in the family sleep room for a few hours each night.

By Thursday morning Kash was maxed out on the drug amounts he could have & it was decided to change his ventilation system to a more aggressive machine. This machine was big & loud & shook his body violently. It was not a good match for Kash as his lungs worked hard against the monstrous machine. That night doctors told us that it was imperative that we give consent for Kash to be placed on ECMO, a system that takes the blood out of the body to oxygenate it & pump it back through the body. This would let his lungs rest & regain strength after the trials they had been put through. There were no other options. There was no way else to go.

Late Thursday night Kash came out of surgery strong & pink & resting, but most importantly his body was finally receiving the oxygen & drugs it so desperately needed. His ECMO team was awesome & his body & his stats were improving greatly. Everyone was happy & optimistic.

It was Friday afternoon when they found the bleed in his brain. We had to consent to another emergency surgery to take Kash off ECMO & then had to wait to see what the extent of the brain bleed would be. It was that night after being taken off ECMO that I was able to hold Kash for the second time. This time felt even better than the first. I had watched my baby fight as he was attached to all those machines & medicine for those days. I had cried in agony as he had undergone 2 major surgeries, praying for his safe delivery. Holding my son felt so good. I would bury my face next to his & just absorb his presence.

During the waiting we were determined to make memories with our son. We told him about his life & his home & his family of sisters & a brother. We gave him wet baths & read him books. We sang songs & encouraged him to get well. He had already gotten through so much & he was such a strong, little bunny.

By Monday morning we were told that Kash was not going to come out of this. His head was severely swollen from the accumulated blood pooling in his brain. We met for a final team meeting as many experts presented their findings & explained why Kash could not get better. It was going to be over.

But my husband John refused to let them take him that day, that Monday. It was Monday, April 18^th, & that meant that it was Kash's 1-week birthday. We spent the day celebrating the only birthday we would have with our little boy. We wrote birthday wishes on his whiteboard in his room & bought a birthday card & balloon with Winnie the Pooh on it from the gift shop. A dear chaplain, Liz Berry, had been by our side during Kash's surgeries, & she joined us on our special day to baptize Kash. Her perfect words included, "A celebration of who you are, & whose you are. You belong to your mama & your daddy, but first also to God".  While I can not deny that there were a multitude of tears that day, there was also a great amount of love & happiness as we celebrated our son whom we would not be able to keep. It was especially hard to see that his autonomic muscle responses began returning after the heavy sedation had finally began leaving his body. I would hold Kash's hand & his fingers would move & his foot would raise up & go back down to rest. Signs of life in this sweet boy that would not be able to live.

We woke on Tuesday hurrying to Kash's side wanting to spend every last moment with him that was possible, knowing that at 11 am we had plans to take Kash to the outdoor garden on the 8^th floor to say our goodbyes. It was on my first day at SLCH that John took me to the garden while the NICU was temporarily closed for another baby's surgery. He promised we would bring Kash there when he was stronger & doing better. Our NICU team was able to make this happen for us, though the day was forecast with storms & rain.

Right before 11, the clouds began to lift & the rain backed away. We took the elevator ride up to the roof with our little boy & his team. The garden had been closed especially for us & blankets covered a wooden bench for us. Kash's lines were removed before the trip up & the only thing left was to extubate. Kash was wrapped in a fuzzy blanket I had bought for him months before he was born & we held our son for the third & final time. We were not able to defeat PPHN. Our fight was over.

We found out months later that Kash's PPHN was too severe to recover. If the bleed had not occurred, Kash would still not have been able to recover. His lungs showed strong thickening & his heart, though normal, simply had to work too hard. There were no genetic disorders or any other condition that contributed to Kash's illness. This whole thing just was simply a worst-case scenario PPHN & nothing more.

Today we still live with Kash's memory all around us. We speak about him each day & keep him a part of our lives. My daughter Kendall “talks” to him on her Barbie phone & we tend to his resting place several times a week, just a country block from our house & across the road from the sitter. My son Alex got out of the car the other day to play a song for Kash that he had learned at school on his recorder. Kash has a memory wall that we continue to work on & that is a prominent part of our home now. A special hutch is almost finished that was designed & built just for Kash & more of his things to be displayed. I can not wait to add this to our home & have a special place for more memories.

I still do not know why all of this had to happen, but I get through each day by being lifted up in prayer by more people than I can imagine. We are preparing for a trip back to SLCH to donate hundreds of coloring books, crayons, & goodies that are all donated to honor Kash's birthday on April 11^th. It is impossible to live inside that world & not have a place in your heart for the many, many kids that stay there each day.

We miss our strong bunny every single day. The NICU staff found a blue bunny identical to Kash's so that I could have one here with me, & he has his' that was with him when he was laid to rest. We are fortunate to live in the country & feel blessed each time we see a wild bunny cross our path. It's like a hello from our sweet boy & a reminder that he was real & he was here. One of the best things I can tell my husband is that I saw a bunny today. All my hugs & love with my Kash McKinley FOREVER!

Kash shortly after birth before transfer to St. Louis Children's hospital.



Kash and his mom loving on each other after coming off of ECMO.


The final goodbye (or till next time)

Phoebe's story

Meet precious Phoebe. Phoebe is tomorrow (3/21) two years old. But unfortunately for Phoebe's parents, she'll be celebrating it in heaven with her younger brother, Ronan.
To continue from my previous post, I don't want all those sweet babies that left earth way too soon to be forgotten. I want to honor their memories. I'm hoping I can share many, many more angel babies.
I met Phoebe's mom and later her dad at St. Louis Children's hospital when their son was Noah's next door neighbor. I consider them dear friends of mine, and I couldn't think of a better angel baby than Phoebe to start of my new project.
Phoebe's story is written beautifully by her mom. Get ready to wipe away some tears (because I did). What an amazing little girl.
Happy birthday sweet Phoebe. I hope heaven has lots of birthday cake for you.

Many, many hugs to Phoebe's mom and dad and the rest of her family who misses her terribly.

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My precious daughter Phoebe Johanna was born on March 21, 2010. She was born at home, which we had planned from nearly the moment we found out we were expecting. She was apparently in quite hurry to meet us, as she didn’t even wait for the midwife to arrive! I was blessed to have my husband and close friend with me to help me through the birth.

We had a beautiful first day with her, surrounded by family who fell in love with her on sight. She was nursing like a champ and doing all the things a brand new baby should do.

When she was just over 24 hours old, she started having some difficulty breathing and we rushed her to the local emergency room, and she was airlifted from there to the nearest high-level NICU, about 2 hours away. When she arrived at the new hospital, they had trouble stabilizing her and within a few hours she was put on ECMO (extra-corporeal membrane oxygenation), a heart-lung bypass used on infants with severe respiratory distress. We were told at that time that she had PPHN, persistent pulmonary hypertension of newborns. In other words, the blood pressure in the lungs was too high, and was making her heart work too hard to push the blood through the lungs.

She responded very well to ECMO and was able to come off the bypass in less than 3 days. Thus began the roller coaster of the most difficult month we could have imagined. Phoebe would seem to respond to treatment, and then would crash. They would try a new medication, a different combination of medications, adjusting doses and timing of the medications. She was paralyzed for several days, because she was so sensitive to noise, light, changes in the room, people talking near her bedside. We spent nearly the last two weeks sitting at her bedside, in a quiet, dark room, not wanting to disturb her in any way, hoping that the rest would give her body the time it needed to heal.

And then came the worst words any parent could ever hear: “There’s nothing more we can do.” They had used every therapy they knew of for PPHN, including some never before used at that hospital. Despite every effort of her incredible medical team, she simply would not get better. We had reached the point that any more intervention, we would be doing to her, not for her.

We called our family so they could be with us when we let her go. Shortly before she passed, they removed as many of the medications, IVs, tubes and wires that they could, and for the first time in a month I got to hold my baby girl. I held her, rocked her, talked to her and loved on her until we told the doctor he could remove the respirator tube. Without the respirator support, she passed quickly and peacefully.

After Phoebe passed, we found out she had a rare lung condition called alveolar capillary dysplasia (ACD). To find out more about ACD you can go to the ACD Association’s website at www.acd-association.com. Less than 200 infants worldwide have ever been diagnosed with ACD. While it did not change the outcome, a definitive diagnosis gave us some comfort. We knew without a doubt that there was nothing anyone could have done differently, nothing we or the doctors missed, no way she could have survived.


Soon we should be celebrating Phoebe’s second birthday. While time has brought some peace, it has not filled the emptiness of not having her with us.

Love you, baby girl. Always.





Two beautiful girls. Phoebe and her mom.