Every Heart Has a Story

Cuddles From the Heart MI is starting to collect blankets for newborn through teenagers!  We give out the blankets in December and we would like to have 500 by then.  We are a bit slow in starting to ask for them as last year we began asking for them at the end of July and it is now mid August. 

Cuddles From the Heart (CFH) started two years ago in Iowa by heart mom Stefanie Jacks.  Last year she opened it up for any state to do.  In June I told her I would like to do it for MI and after Ethin passed away later that month I still said that I wanted to do it!  I am so glad that I did!  It was rewarding and amazing to see how much people truly care about others!  So here we are this year hoping to do the same thing.  Our goal last year was 500 and we did just over that.  Same goal this year 500!!!  We can do this!! 

What we need is new homemade or store bought blankets ranging from newborn to teenagers for boys and girls to give out at U of M Mott Children’s Hospital in December.  The blankets are a very comforting thing to many families while they are in there and sometimes just one blanket can make the hospital feel a little less like the hospital.  Ethin’s Heart Still Beats board members are all ready to go to Ann Arbor in December and as a board we decided that we want to do this so you can mail your blankets to
E.H.S.B
9172 S. Croswell Ave.
Newaygo, MI 49337
If you have any questions you can email me at chdhlhs09@yahoo.com

Every Heart Has A Story

In may of 2008 my life was busy I had just moved and was adjusting to being a single parent when I found out I was pregnant.  My pregnancy started off very rough and I was put on bed rest due to placenta previa.  On a visit to the perintologist I was told that my placenta had moved back to a normal position, but they thought there was something wrong with my child’s heart.  July 17, 2008 I was given news that no parent wants to hear.  My baby a boy my children and I had decided to name Ethin was going to be born with a Congenital Heart Defect (CHD) called  Hypoplastic Left Heart Syndrome (HLHS).

The doctors that day had me decide what I wanted to do and I knew I was going to have my son and give him the best chance at survival I could.  This meant delivering my son in Ann Arbor, MI at the University of Michigan Mott Children’s Hospital three hours from my home.  I had many appointments with my pregnancy and Ethin was growing well and was truly perfect with a very special heart.

On January 9, 2009 at 4:01pm Ethin entered this world by c-section screaming like a normal baby.  I remember just feeling elated I heard him cry, but sad that I did not get to see him.  Ethin was whisked off into the neonatal unit to begin his medical testing to see how bad his little heart was.  In the meantime I was doing everything I could in the recovery room to just prove I was well enough to be wheeled in to meet my son.

Finally at 8:30pm they wheeled me down to “meet” my son.  By the time I was wheeled into the room Ethin already had IV’s started and he was intubated.  All the hopes I had of holding my sweet newborn went crashing down right before my eyes.  However I got to touch him and look at him and he was PERFECT!  He was the most amazingly beautiful little baby boy in that unit.

The next day Ethin was taken up to a Pediatric Cardio Thoracic ICU (PCTU) or Pod A.  For the next five days I did nothing more than sit by his incubator and kiss his head, pray, hold his hand, and read to him.  I longed to hold him and finally when he was six days old at 6am a team of four people picked up my son and placed him into my arms.  He fit there perfectly like a puzzle piece that I had been missing for six days.  This sadly was also the morning they would take my son out of my arms and wheel him into a surgery room for his first open heart surgery called the Norwood.

I spent that whole day in a waiting room just waiting for them to come up and tell me how we was doing.  Finally they came up for the last time and it was his surgeon she let me know he was in critical condition but that I could go back and see him in an hour.  I went back and seen him and he looked really bad.  He was very swollen and his chest was left open.  The next two weeks were slow moving, but finally he was out of PCTU and I was able to feed him, dress him, change him, bathe him, I was really his mommy.

When Ethin was 3 ½ weeks old we finally went home.  His sisters were very tentative and his brother just liked knowing he had a baby brother.  Sadly home was a short lived thought when on our sixth day home Ethin became very ill and we found ourselves at a local ER awaiting a critical transport back to U of M.  Once back at U of M Ethin began to decline and needed to be intubated again if he as to live as he could not breathe on his own.  Somehow Ethin had caught a respiratory virus and after just 2 ½ weeks in the hospital we were home again.

Home this time was an adjustment.  He had so many medicines for his heart and doctors every week.  It was busy but I had my other children who loved being able to be a part of his care and looked forward to feeding him and cuddling with him too.  After 3 ½ weeks home though Ethin again became very ill and was again taken back to U of M.  Once there it was determined that Ethin had caught rotavirus.  Ethin’s special heart made it very hard for him to fight off any sickness.  U of M also decided at this time that he would need his second surgery the Hemi-Fontan.

April 1, 2009 was the morning of his surgery.  I held him all night the night before and I prayed with him and I told him how he had to fight and that I needed him.  At around 11am on the 1st they let me sit in a wheel chair holding him to go down to the surgical holding area.  By 11:30 a nurse came in and told me it was time and she put out her arms and very reluctantly I handed over my son.  At 7:30 they finally came and got me to go back and see him in the PCTU.

Ethin was not doing well and the look on the doctors faces and his nurse’s face were clear evidence that my son was very sick and extremely critical.  I was told to call anyone that I might want to be there, because they did not know if he would make it.  My pastor came down and on April 2, 2009 I had him baptize Ethin.  On April 7, 2009 I was called by the hospital and asked to get there as soon as possible.  I was a block away and was there in his room within 7 minutes.

His nurse told me he was not doing good and his doctor came in and said set him up for surgery.  As I sat there with Ethin I began to pray and cry.  It was at that moment that I started demanding Ethin to fight that I needed him with me and that he made it this far that he needed to fight harder.  I remember very vividly telling him, “I love you and you are a part of me which means you have a lot of fight in you and now I need you to fight, because I can not live without you.”  those words have haunted me ever since.

Within twenty minutes a surgical nurse came to me and said they were ready for him downstairs.  I walked next to his bed and when the elevator opened his doctor came out squeezed my shoulder and I entered the elevator with my son.  We rode down and at the bottom they said that was as far as I could go.  I cried so hard I thought I was going to pass out as I watched them wheel him down the hall and through doors and I stood there until I could no longer see him.

I waited in the waiting room on the 5th floor for them to tell me he was done and hours later they did.  I went back to see Ethin and I was so thankful he was alive.  The next few days were slow going.  Finally they said they were going to extubate him.  They did and Ethin was placed in my arms.  I was so happy.  I left the hospital and went to get some sleep and about an hour later the hospital called me and told me they had to reintubate Ethin.  That his lung collapsed.  I went to the hospital I was so furious that it felt like every time we went forward we also went back.  Ethin had his fourth surgery to plicate his diaphragm on April 9, 2009.  From there everything was forward and back with intubations and extubations, but finally Ethin did it he was beating his CHD and was moved to moderate care and eventually to the general care floor in June of 2009.

June turned out to be a long month with weaning him off certain meds for pain and comfort.  He also had to be relearn how to eat from a bottle and was in physical therapy for his fine and gross motor skills as he had been on his back and in a laying position for so long.  Ethin did well with it all and was soon eating from a bottle and had just started learning how to sit up.

Back home our church had set up a benefit for our family and that was going to happen on June 27th.  Knowing I would go home for that benefit I began to set up things with the hospital so that while I would be home I would feel more at ease with leaving Ethin for three days which would be the longest I had ever left him.  On June 25th I made the three hour drive home.  June 26th I went and picked up my other three children for the benefit the next morning.

On Saturday June 27th I woke up with an awful feeling and called the hospital at 6:30 in the morning.  They said Ethin had been running low grade fevers, he was still teething, and they planned to start an IV on him.  I said OK and told them I would call a little later to check on him.  At 7am my children and I arrived at the benefit and I still could not shake the awful feeling I had so I called the hospital again.  They said nothing had changed.  I let them know I would call around 10am and that I would be on my way back to the hospital around noon and planned to arrive there close to three.

At 9am my phone rang and it was the hospital.  I will never for as long as I live forget this call.  His nurse said, “Jessica, Ethin has coded.”  I could barely breathe and I knew that it was all done.  I knew that I would never see him alive ever again.  I stumbled to the doors at the benefit calling for his pediatrician who was there the whole way.  Once I hit the outside I collapsed screaming and trying to breathe.  I tried to tell the doctors to put him on life support and keep him alive till I got there.

I was immediately put in a vehicle and driven towards Ann Arbor to try and get back in time even though I knew it would not matter.  At 9:45 my phone rang as I was in route to the hospital and it was his doctor our favorite doctor and his words will also always stay etched in my mind, “Jessica we have done everything we can.  We echoed his heart and did an ultrasound on his brain.  Jessica I am so sorry, but we have to call the code he’s gone.”  I just cried and collapsed there on the side of the road.

The rest of the trip to Ann Arbor I called friends, family, and everyone that I knew would need to know.  I arrived at the hospital at noon.  I ran from the elevator to the room where I knew he would be.  When I opened the door I just collapsed at the sight of my son as he looked nothing like the smiling boy I had left two days earlier.  He was intubated and had IV’s that I demanded be taken out.  Once they were taken out I gave him a bath, dressed him and carried him back to that room.  Once in that room the emotions flooded every sense of my being.  I held him, I told him how sorry I was, I kissed him, and eventually I even fell asleep with him.  I took him outside to the let the sun light shine on his face.  He truly was an angel.

People started to arrive at the hospital and everyone wanted to know what they could do.  Some people stayed outside the room some came in, Some helped pack all the things that were at the hospital and others packed what was at the Ronald McDonald house.  My pastors had made contact with a funeral home back home.  And a good friend offered to take me home for the night as I knew I did not want to spend another minute in Ann Arbor at that time.  At 6:30pm I finally made the walk with Ethin in my arms to his hospital bed where I laid him down one last time and my friends pried me from him as I knew I had to say goodbye.

I do not recall the ride home that night, but I do remember feeling like a part of me also died.  I held his things in my arms and through the night my friend would come in and wake me up asking me to drink water and then I went right back to sleep.  Sunday June 28th I woke up and was driven to the funeral home to make arrangements.  Once that was done I went right back to bed and to be honest I do not remember making many arrangements.  Monday June 29th I bought a cemetery plot.  Tuesday I spent with my other children and Wednesday July 1st I dressed my other children and we made our way to the church for the viewing.

Once at the church I felt as though I could not move.  I did not want to go in that building and see what was going to be before me.  My kids and I walked in and we had a very private service for my children one that was for them to understand what happened and for them to feel free to ask questions and get answers that they needed.  That evening was very long and I did finally break down near the end when I knew I had to leave him again.

I stayed with friends that night and slept very little.  Every time I fell asleep I would see Ethin healthy and then in that casket.  It was a nightmare.  Thursday July 2nd I woke up and got ready for the funeral.  I went and got my children ready for the funeral and I arrived with enough time to be there as others arrived at the church.  My best friend finally showed up and he walked with my kids and I into our seats.  I am not sure that I recall the funeral at all.  I mean I know things that were supposed to happen and I know they happened, but some things are very blurry.

At the end of the service my children and I followed the pall bearers out and watched them close the doors to the van his casket was put in.  I was helped into my best friends vehicle and we followed all the way to the cemetery.  Once there it was short and sweet I do remember asking everyone to meet me back at the church, but I needed a few moments to myself.  I got on my knees and just threw my body over that casket.  Finally I was helped up and I watched them lower him into the ground.

The rest of that day is a bit blurry I know I ended up in the ER from exhaustion.  The days that followed July 2nd I can not even remember.  And the year that followed was full of many painful memories and thoughts.  That first year of firsts never failed me as hideous reminders that my son was gone.  And when June 27, 2010 came it was as though I just assumed that all the hurt would go away too.  All that changed that day was that every first day of the first year without my son had inevitably happened.

It’s August 18, 2010 as I write this now.  I am not like I used to be, but I am learning to live in this life as a mother who lost one of her children.  I went back to work in April and found a second job in May.  I started doing more normal things this summer as I play on summer softball leagues.  I recently moved back into my own place and I even have started to truly live again.  My smiling now is more genuine and I find that even though I have bad days I also have good days.  I also founded and now run a non-profit organization in memory of Ethin.  It is a hard balance from time to time to know how much to hang onto and how much is OK to let go.  I was once told that it was a fine art and I am sure I have not mastered the art of grieving, but I have mastered the art of avoidance.

I am by no means the authority of grief, but I am the authority of my grief.  So when I have a bad day I know that it’s OK and I also know that I am on no timeline as to when I can no longer grieve for Ethin.  The truth is I will always grieve for Ethin, but my grief has and will continue to change.  Losing my son has changed every part of me and everyone knows that I am different now.  I have come to appreciate this life so much more and have truly taken time to be thankful to God for every blessing in my life.  I have no doubt that the only reason I am able to write this now is that God brought me to it and he has brought me so far from where I was.

Losing a child has been the hardest thing I have ever gone through.  I always wonder what he would look like and what he would be like.  I am very blessed with my other children and as the three of them and I have learned how to go on after such a loss it has brought us closer to each other and to God.  My children and I have faith and we know where Ethin is and even though he is not physically with us we are assured every day that one day we will all be together in Heaven forever.




I originally wrote this for Faces of Hope as a way to help other parents who lost their children, but when Stef let me know about her Every Heart Has a Story blog event I thought I would use it for this.  Our story has been a roller coaster and though it did not end the way I wanted it to; it truly is a story from my heart about my son who truly still amazes me to this day.  His heart led me to so many other amazing hearts and friends and family.  I wish that my story did not have an ending and in the physical sense it does, but in every other sense it does not.  Ethin's Heart Still Beats and this is evident in my every day life.  Please know that I was skeptical about posting our story, but I was urged to and so here it is......In it's entirity I suppose I could share the information that I am now the heart patient in this family so even my heart has a story that is unraveling before my eyes......

Jessica mommy to:
Ethin RaiLuc
Birthdate: January 9, 2009
Angel Date: June 27, 2009
Newaygo, Michigan
http://ethinsheartbeats.blogspot.com/
chdhlhs09@yahoo.com