Our family’s NICU journey really began several years before Eli was born. It is a story of hope and faith, walking hand-in-hand with tragedy and depression.

In December 2002, I had an early miscarriage. It was a very traumatic and emotional experience for my husband and me. We had been married for almost 3 ½ years and were ready to expand our family. At the time we were working at a church, and my husband was the Children’s Pastor. I was proud of the work we were doing for God. I prayed for a miracle, and when we lost the baby I just couldn’t understand why God would say No to my prayers and take this child away from us. Sometimes I was mad at God. And sometimes I was mad at myself for whatever I had done to deserve what I saw as a punishment. I never could reconcile my feelings, and I sank into a deep depression. I did not see God as trustworthy anymore, and the Bible verses that had once brought me comfort and direction now just sounded like a lot of noise. I was left to “go through the motions” of my Christian faith while slowly dying inside.

Just a few months later I was pregnant again. There were mild complications right from the start, so naturally I was filled with fear. I was so afraid that I would miscarry again, especially since I knew that I was not close to God. I honestly felt like I deserved to be punished again, but I still managed to find a tiny sliver of hope deep down in my heart – perhaps God was merciful; perhaps He could somehow find it in His heart to let me carry and deliver this baby safely. But of course, I had no reason to truly believe that. Any spiritual foundation I had before my miscarriage had crumbled. And at this point I felt that I had fallen out of His good graces forever. Because of this, I was overwhelmed with anxiety and even terror. 

By this time, I had been told by my doctor that my womb was abnormally misshapen. This could have been the reason I lost my first baby, and could also prove dangerous for this second baby. I was told to watch for signs of preterm labor. Amazingly, my little girl and I survived 39 weeks of pregnancy, and I delivered her via C-section with no physical complications. Words cannot express how relieved I was; nor how exhausted I was. The months of anxiety had taken their toll on me. I was thrilled to have a beautiful baby girl, but my heart was still hard toward God. Even this miracle did not heal the hurt I had from the miscarriage.

It wasn’t long before I was pregnant again. My anxiety was considerably less this time, as the complications were not as severe. But my depression had worsened. I began to realize that I needed help, and I reached out to both my pastor and my doctor. I even visited a Christian counselor. They all had wonderful intentions – but nothing was really helping. I remember praying, crying out to God through hot tears, “I hate myself! What’s wrong with me? Why can’t I snap out of this? Why won’t You help me?” Just when I thought I couldn’t get any lower, our son Eli was born 10 weeks before his due date.

We were plunged into the uncertain world of the NICU, and with a very traumatic birth experience. As the placenta pulled away from the wall of my uterus, my water also broke. My body began to go into shock because I was losing so much blood. I came very close to passing out, and the EMTs had to do a lot of maneuvering in order to get me safely onto the gurney from our bathroom floor. I couldn’t bring myself to speak during the torturous 45-minute drive to the hospital, while the paramedics tried desperately to find my baby’s heartbeat. It wasn’t until we had arrived at the hospital and they had cut off my t-shirt that I heard the familiar woosh-woosh of my baby’s heartbeat on the monitors. I was comforted by relief for a little while, but returned to my old friend fear again when the contractions started coming regularly, despite the doctor’s efforts to keep the delivery at bay. Everything about me was completely numb. The doctor performed a C-section, and it took all the strength I had in me to stay conscious during the delivery. I felt like I might die.

Eli was born not long after 4 a.m., and I barely saw the nurses remove him from the room out of the corner of my eye. After what seemed like days, they finally wheeled my bed into the NICU, where I saw my son for the first time. I was not allowed to hold him yet. I remember thinking his head was about the size of a tennis ball. We quickly decided on a name, and then God gave me a very special gift. Right after I said, “I love you Eli,” he opened his eyes for the very first time. Somehow I knew right then and there that Eli was going to be okay.

We endured a lot of ups and downs over the next several weeks. Within hours of his birth, they transferred him to another hospital with a better-equipped NICU. My husband was forced to decide whether he should spend the night at the hospital with me, or with our son. I told him to go with our son – we didn’t want him to be alone on his first, most critical night. Then God gave me another very special gift. My parents had quickly flown into town and arrived that night after Eli had been transferred. I melted into a puddle of tears when they came into the room. It took me 3 days to re-gain my strength so that I could get out of the bed and go visit my newborn son at his new NICU home. The weeks after that were filled with gifts from God, both large and small. We were able to visit Eli in the hospital almost every single day. I even drove my mother-in-law through a blizzard one day, and God got us there safely. And every milestone that Eli was supposed to reach, every obstacle he was supposed to overcome – he did.

We brought Eli home from the NICU at 5 pounds, and still 5 weeks before his due date. His only physical challenges were temporary - reflux and his need for supplemental oxygen. I should have been joyful. I should have been better. But something inside of me was still broken. Even after God gave me the gift of being a stay-at-home mom (something I had longed for since my daughter was born), I struggled. Eli cried a lot. I didn’t get much sleep. I still felt far away from God. And the anger was still there. Sometimes I was even mad at Eli. I existed in a fog.

Despite my anger, deep down I still knew that God had the answer. He was God, after all. But did He want to help me? Did I deserve to be helped, to be healed? After having my prayers bounce off the ceiling for months, one day it occurred to me that maybe I was asking God the wrong questions. I began to ask Him, “Who can help me?” I knew that what I needed was to talk to someone in the flesh, since I couldn’t seem to hear God’s voice. Almost immediately a friend came to mind. She knew so many people; perhaps she knew someone who could help me and counsel me. Remarkably, she did know some counselors, and they turned out to be exactly the right people I needed to see.

The most profound and healing truth I learned in counseling seems so simple to me now. But because of the deep wounds I had in my heart, it took a long time for me to accept this truth. After a lot of talking, I finally slowed down long enough to hear from God. I examined myself. I asked for forgiveness for wrongs I had done, and faith I had lacked. I took the time to sit still and listen to God. And I finally heard His still, small voice say the things I had been longing to hear… it was as if the God of the universe said to me: “I love you, Jessica. I have never left your side. Remember this hard time? Remember that struggle? Look, I was right there with you. Because I love you. And I proved that love for you when I sent my Son Jesus Christ to live a perfect life on earth, and die on the cross to take the punishment for your wrongs. You have said that you believe in Jesus, and that He rose from the dead and made Heaven possible for you. You have said that you want to have a relationship with me through Christ. Now live like it! Being close to Me is not doing religious works or good deeds. Being close to Me does not require you to be perfect. Being close to Me is this – sitting quietly with Me, listening to Me, and sharing your hurts and struggles with Me. I am here, and I always have been. I love you.”

Now a decade later, my family and I are hoping to encourage YOU through Eli’s Hope. We have walked through the dark valley. We have endured the NICU. And we have come out on the other side, not just as survivors but triumphant and thriving overcomers. But only by the indestructible grace of God. And that grace of His is not just for us – it’s for everyone who will receive it!

If you want to know more about receiving God’s gift of grace through Jesus Christ, you are welcome to contact us. Or if you’re not ready to talk yet, maybe you will consider finding a Bible and reading from the book of John or Romans. Whoever reads this post, we want you to know that we care about you and we are praying for you.

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. (Romans 15:13)

Recently I blogged to raise awareness of Post Traumatic Stress Disorder and severe depression among NICU families.  PTSD is something that I (Jessica) suffered from after delivering my son Eli 10 weeks early due to placental abruption and Preterm Premature Rupture of Membranes (PPROM).  The delivery experience and NICU journey left me traumatized and depressed.  To this day I occasionally have things happen that re-trigger the fear and overwhelming sadness I felt in those days.  And I know I’m not alone.  But have you considered that the EMTs, doctors, and NICU nurses may also struggle as they watch these events play out in front of them?

To begin with, most health professionals experience Compassion Stress.  This is the stress that comes from knowing about a patient’s trauma and wanting to help them.  With the buildup of Compassion Stress lacking release, and depending on the severity of the trauma witnessed, Secondary Traumatic Stress can develop.  Dr. Angelea Panos, an expert on the subject, says that Secondary Traumatic Stress is when professionals show “signs of PTSD that mirror those experienced by trauma clients, friends, or family members . . . many clinicians note that those who witness traumatic stress in others may develop symptoms similar to PTSD.”  And as we all now know, PTSD is not something we should just sweep under the rug.  It affects how a person functions, and can spill over into every area of his/her life.

In addition, a high amount of Compassion Stress can lead to burnout and even Compassion Fatigue.  Francoise Mathieu (M.Ed., CCC) defines Compassion Fatigue this way: “It is characterized by deep physical and emotional exhaustion and a pronounced change in the helper’s ability to feel empathy for their patients, their loved ones and their co-workers.  It is marked by increased cynicism at work, a loss of enjoyment of our career, and eventually can transform into depression, secondary stress and stress-related illnesses. The most insidious aspect of compassion fatigue is that it attacks the very core of what brought us into this work: our empathy and compassion for others.” 

As NICU survivors, we at Eli’s Hope are forever grateful for the care and compassion that was shown to us by the many healthcare workers we encountered at the beginning of our journey.  But in all honesty, we never considered that our situation might also be causing trauma and stress in their lives.  So today we want to express our concern for healthcare workers everywhere, but especially those in the NICU.  If you work in the NICU, please take some time to evaluate where you are emotionally.  As mentioned in our World Prematurity Day blog (11/17/13), a PTSD self-evaluation can be found here:  http://healmyptsd.com/education/do-i-have-ptsd.   In addition, please take a look at the following symptoms (not all-inclusive) of Compassion Fatigue to see if you may be suffering from it:

·         Exhaustion

·         Reduced ability to feel sympathy and empathy

·         Anger, irritability

·         Dread of working with certain patients

·         Diminished sense of enjoyment of career

·         Heightened anxiety, irrational fears

·         Hyper sensitivity or Insensitivity to emotional material

·         Difficulty separating work life from personal life

·         Absenteeism (missing work, taking many sick days)

·         Impaired ability to make decisions and care for patients

Compassion Fatigue requires intentional self-care.  Some self-care actions include exercise, eating healthy, getting enough sleep, not over-extending yourself, and developing a healthy support system through friends, family, your church, or even counseling.  Secondary Traumatic Stress (PTSD symptoms) may require further intervention.  We encourage you to reach out and get the help you need to live a healthy and fulfilling life.  We care about you!  And we want you to be able to give your best to every patient and family you encounter.

Because this may be a new concept for some, please feel free to share this information and pass the word on.  And visit www.compassionfatigue.org to find out more.  

“The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water and without getting wet.”  (Dr. Rachel Naomi Remen)

This year as we recognize World Prematurity Day, we at Eli’s Hope feel a strong urgency to share about one of the harsh realities faced by many preemie parents – Post Traumatic Stress Disorder.  PTSD is caused by exposure to a traumatic event (usually involving threatened death or serious injury).  The symptoms include repeatedly re-experiencing the traumatic event mentally, avoiding reminders of the event, as well as other physical issues like irritability and sleep disturbances.  Because of the stressful circumstances that accompany premature births, parents of these tiny babies are at a greater risk not only for anxiety and depression, but for the ever-lingering, sometimes-debilitating PTSD.  The risks apply to both mothers and fathers alike. For myself, the experience of Eli’s early birth was very scary and traumatic.  But I didn’t realize until much later that I was actually dealing with PTSD.  It took several years for me to conquer my depression and PTSD.  
  
But the good news is that the symptoms of PTSD and depression can be significantly lessened (and perhaps even eliminated) when there is an early diagnosis and sufficient support/education.  To find out if you (or someone you love) may have PTSD, you can do a self-evaluation here: http://healmyptsd.com/education/do-i-have-ptsd.   Michele Rosenthal’s website “Heal My PTSD” is a wonderful resource with lots of information.  Of course, an online evaluation is no substitute for your doctor or psychologist’s professional diagnosis.  However, it is a good place to start as you begin gathering information.
 
In addition to contacting your doctor, there are other strategies you can implement if you think your preemie/NICU experience is leading you down the road of depression/PTSD.  While your little one is still in the NICU, you can immediately begin practicing Kangaroo Care.  Kangaroo Care involves skin-to-skin contact with your baby for extended periods of time.  It is not only good for the baby’s health and development, but it can also be very healing for the parents as they develop a special bond with the baby through touch.  
 
Another extremely helpful activity to combat depression/PTSD is finding a support group.  In today’s technological world, support can be found in countless places.  There are groups on Facebook, blogs and websites, in-person support groups at local hospitals or other facilities, and even call-in support groups.  You can also ask a NICU nurse to refer you to a social worker, chaplain, or counselor.  In addition, you may be able to find good support from your family and friends, as well as your local family of faith.  Sometimes just airing out our feelings to a listening ear is sufficient to ease our emotional distress; other times we need more individualized support from a professional or someone who has been in circumstances like ours. Don’t be afraid to reach out for help from more than one source, until you get the help you need.
 
As NICU parents seek help from others to deal with their PTSD, they can also implement various stress-reducing (self-care) techniques themselves.  Some of these include deep breathing, journaling/blogging, writing a letter to the baby, and taking a
walk/exercising.
 
Every NICU parent experiences stress.  It’s unavoidable.  However, there are many cases where that stress combines with other factors to create a more serious emotional situation like PTSD.  When this happens, the parent needs help.  Everyone heals at a different pace, but hopefully with more education and support we will see preemie/NICU parents overcoming their symptoms of depression and PTSD much more quickly.

Eight years ago today, Eli was born.  He came through his NICU journey with such strength and spirit, while I was feeling weak and depressed.  Fortunately for our family, Eli’s spirit was contagious – and still is!

After just a few months of actively distributing NICU support care packages, yesterday we
celebrated the 2nd annual Parents of Preemies Day by hosting an event in conjunction with Graham's Foundation at one of our Chicagoland hospitals.  Over one hundred attendees, volunteers, and exhibitors came out to enjoy the activities at Northwest Community Hospital (NCH) in Arlington Heights, IL. Parents had the opportunity to mingle with each other over snacks, and gain encouragement by sharing their stories. Over a dozen exhibitors were there to share information and show preemie parents how they can give back. Meanwhile, the children were entertained by local sports mascots, face painting, coloring, and crafts.  We were also joined by Jake and Nasha, two canines from NCH’s dog therapy program –they were a big hit!

Dr. Joel Fisher, Neonatologist and Director of the NCH NICU, spoke to the parents about developmental outcomes.  It was exciting to see parents whose preemies were born at various hospitals throughout the Chicagoland area.  But I know it was also very special for the NCH nurses and other staff in attendance to see some of their own NCH NICU graduates growing up so healthy and strong.  Many parents had submitted pictures of their preemies in the NICU, which were then displayed on the big screen for all to see after the presentations.  It was incredible to remember where we have all journeyed from, and then look at our children now and see how well they are doing.

Eli’s Hope was also highlighted, as I got a chance to share a little bit about Eli’s story and what we hope to accomplish through our organization.  We also gave out lots of great prizes as a way to further celebrate and honor the courageous preemie parents in attendance.

Our hope for this day is that preemie parents went away encouraged and inspired.  The morning was concluded with a call to action that I submit to you as well – what will you do with the experience you’ve been given?  Life marches on after the NICU, regardless of how we feel.  So let’s take our victories, and our failures, and use them to help other preemie parents along the way.

Many thanks to our local sponsors:
Northwest Community Hospital
and
Peapod

And we appreciate the participation of the following exhibitors:
Northwest Community Hospital resources
Little Giraffe Foundation
Papas of Preemies
Life After NICU
Illinois Organization of Mothers of Twins Clubs, Inc.
MedImmune
Mothers' Milk Bank of the Western Great Lakes
Mended Little Hearts
Teeny Tears
I Am Who I Am
Clearbrook
Eli's Hope

This post is long overdue . . .

Right before the holidays last year, we finally assembled and delivered our first batch of gift bags to our two partnered hospitals!  At left you can see the wonderful volunteers who gave up part of their weekend to help put the gift bags together.  We had quite the assembly line going!  Thank you to each of you fabulous ladies who came out to help.

Below is a picture of some of the medical staff at Northwest Community Hospital in Arlington Heights.  They have received the majority of our gift bags so far.  We were also able to bring them some Teeny Tears diapers for their Bereavement program, thanks to one of our local volunteers who worked so hard to sew the handmade mementos.  Although we may never meet many of the families who receive our gifts, we have been told that they have been received gratefully.

Our desire is to kindle the flame of hope that burns in the heart of every NICU parent.  And we look forward to serving these families for many years to come!

This summer we had the opportunity to attend two local events aimed at bringing NICU families together . . . Life After NICU's Playdate in the Park, and the Papas of Preemies Cookout. 

Life after NICU is a blog and online support forum for parents who are going through or who have survived the NICU experience.  Although their online reach is endless, they are based in the Chicago suburbs.  I met their founders, Kelly and Aimee at an event they held earlier this year, in an effort to bring support and encouragement to local NICU families.  They launched their adventure online nearly a year ago, and their Facebook page already has almost 2000 likes! 

Papas of Preemies is another blog and online support forum, specifically geared toward giving NICU dads a voice.  I met POP's founder, Joel, at the same event where I met Kelly and Aimee, and I remember being very excited to meet a NICU dad who was so ready and willing to share his story and reach out to others.  His Facebook page has also really taken off, and is nearly halfway to 1000 likes after only 5 months.

When we started our journey pursuing our dream of a NICU support organization, it seemed like there was no one out there doing this kind of thing.  But over the last year we have been happily surprised to discover that this dream of ours is shared by others who also have a desire to give back.  And we are honored that they are willing to partner with us and work alongside us in this dream. 

Both the Playdate in the Park and the Cookout were a great success.  They resulted in bringing NICU families (and even nurses) together, and building relationships.  It is so important for NICU families to know that they are not alone, even after they go home.  Thank you Life After NICU and Papas of Preemies -- we look forward to many years of service together in Chicagoland!

Last week I had the privilege of attending the National Premature Infant Health Coalition (NPIHC) Summit in Washington, DC.  Those in attendance heard speakers on Kangaroo Care, Developmental Care, and the use of social media in the world of prematurity.  All of the sessions were enlightening and educational.  I was especially moved by the information shared regarding skin-to-skin contact with newborns, and the importance of parental involvement in every NICU baby's care.  In addition, the summit gave Eli's Hope the opportunity to make some significant connections with both medical/professional and parent-led organizations.  These connections are opening doors for us as we move forward in serving our first hospital (St. Alexius Medical Center) and its NICU parents.  For example, I met several representatives from MedImmune who connected me with their advocacy division, which provides a wealth of educational materials for nonprofits like us.  The medical/professional groups seemed to be very excited that there were at least 7 parent-led organizations represented at the summit.  It was refreshing to see the openness and willingness to collaborate among all the groups, and we look forward to seeing these relationships grow as we forge ahead and strengthen each other's missions in the months to come!  After all, we share the same ultimate goal -- the betterment of the lives of NICU babies everywhere, and their families.  I am extremely thankful to God for making this trip a reality for me.  I also want to thank Keira Sorrells of the Zoe Rose Memorial Foundation for everything she did to make this trip possible as well . . . and I look forward to the opportunity to pay it forward some day!