Ellie’s Story: A Message of Hope & Faith for NICU Families

Posted in Babies, Motherhood
on September 10, 2017

Today I’ve invited my friend, Melissa, to share the incredible story of her baby girl Ellie.  From day one, Ellie has had a special purpose, and her story is beyond incredible. Quite simply, you are about to read a miracle.  

If you or a close friend or family member have ever experienced what it’s like to have a baby in the NICU, then you know how just stressful it can be.  Melissa shares how she and her husband chose faith over fear in the face of death.  This story is raw, emotional, and powerful.  I love these brave mama friends of mine that are willing to share their hearts and advice with you all.

It’s a powerful thing when momma’s work together and encourage one another, isn’t it?  Melissa not only shares her heart-wrenching first days with Ellie, but also some amazing words of encouragement for all NICU moms.

We hope that this post encourages NICU families to continue having faith and hope, even in the midst of dark days.  We pray that  families facing uncertainty feel the same unexplainable peace that Melissa and her family felt.

I’m so excited to share Melissa’s words with you.  Here is Ellie’s Story…

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“Faith is the confidence that what we hope for will actually happen; it gives
us assurance about things we cannot see.” Hebrews 11:1

Bright and Shining Faith

No one ever expects to have a baby in the NICU. When you get pregnant
you dream of having the perfect delivery, the perfect newborn phase and all
the beauty that comes from a brand new baby.  I would love to share my
very unexpected, but beautiful journey with you.

My 3rd baby was to be my last baby. I knew going into pregnancy that I
would savor every moment. She was everything I had dreamed about. I
dreamed about my delivery day and how I would bring my other two
children in to meet her.

I had dreams of my kids getting a cute picture with
her on the hospital bed. I was especially excited for this baby because she
was a little girl and my older daughter was thrilled to be getting a sister.

November 4, 2016 I was scheduled to be induced at 8:30 am. My middle
child & my 1st’s labor was only 1 hour-long and so my doctor wanted to have a
controlled environment so she wouldn’t be born in the car.

On the early
morning of November 4th, my water broke at 2:30 am.

I was thrilled, but
very nervous that my labor would go fast. We got in the car and quickly
made it to the hospital. We were checked in and brought to a delivery room
at 3:30 am.

It was an amazing labor and delivery and out of all 3 children
the easiest. I had so much peace and literally did not feel one contraction
(thank you epidural).

I smiled and laughed and was just so happy! It was
everything I had dreamed about.  At 9:02 am my sweet Ellie Faith was born. She was perfect.

The amazing nurses laid her on my chest and I was able to look into her eyes. I remember thinking how wonderful it was to see her.  The nurses brought her to the warmer and checked her apgar scores at 1 and 5 minutes.  Apgar is a quick test performed on a baby at 1 and 5 minutes after birth. The 1-minute score determines how well the baby tolerated the birthing process. The 5-minute score tells the nurse how well the baby is doing outside the mother’s womb. Her scores were perfect! 

The nurses told us that she was  8 lbs 9 oz which was my biggest baby…I couldn’t believe it!  At 9:20 they wrapped her up in a blanket and brought her back to me. As they brought her back I noticed her head was rocking back and forth and as she tried to breathe it sounded like a tapping noise.

I didn’t think much of it and the nurse asked if we wanted a family picture.

After the pictures were taken, the nurse noticed her breathing was getting worse and she went from a normal new baby color to a blue/gray color. She scooped her up and this would be the last time I’d hold her on her birthday.

A frenzy of activity followed. The nurses had called in a pediatrician to help with the situation and I heard “I can’t get a pulse ox over 40%.” My heart sank. I looked at Matt completely blindsided and terrified.

This was not how I expected my daughter’s beautiful birthday to be.

They continued to work on her where they suctioned her throat, put a mask on with oxygen and took her pulse ox again. Right before they left she said “I got her pulse ox to 100%.”

They told us that they would bring her back after they checked her out in the NICU. We waited for about an hour and then there was a knock at the door and in walk in 4 nurses, a doctor and a med student. I immediately thought Ellie had died and they were bringing people to comfort us.

The doctor started with “we had to intubate her because her heart rate got down into the 60s (normal for baby is 150).” I did not hear anything after that. I immediately started to sob. How is it a perfect pregnancy and delivery could end up like this? My whole body went numb and it felt like a bad dream.  She told us they would come back and bring us to the NICU in a few minutes. 

After a few minutes of processing the fact that the next day, weeks and months of our lives were going to be the complete opposite of our expectations 60 minutes earlier, we decided to text our amazing pastors, Pastor Dominic and Amira Russo.  Their only reply, “we are on our way.”  They walked in about 20 minutes later and started to pray for us. It was a powerful moment, but all I remember is being very quiet and not able to pray.

Thank God for others who come along side you to pray when you have no idea what to pray or how to even muster the emotional or physical strength to pray.  

We waited patiently until the nurses came back to get us. They brought me a wheelchair and took Matt and I down the hall to the NICU. As the door opened I lost it again. There she was…laying blue and lifeless.  Eyes closed, hands cold and motionless, mouth forced open by the plastic tubing down her throat, leads all over her chest, tape across her face and body keeping everything in place, machines and tubes surrounding and running in and out of her tiny plastic box. 

Her pulse ox went down into the 60% range and so there were alarms going off. She looked like an experiment out of a sci-fi movie and it was almost too overwhelming for me.  How was this the same perfect baby that I had just delivered 2 hours ago whose blue eyes opened up so perfectly and looked into mine? Through the tears the nurse attempted to explain how I was allowed to touch her, which I was absolutely terrified to do.  If I accidentally nudged a tube or machine, I might break her.

The neonatologist approached us and explained that they had called a cardiologist from Royal Oak Beaumont to come and examine her. The cardiologist and neonatologist had absolutely no idea what was wrong with her.  They checked her heart and lungs which structurally looked perfect.  They said that there seemed to be an unexplainable “wall” in between her heart and lungs on the echocardiogram.   Blood was not making it from her heart to her lungs, unable to retrieve new oxygen.  Physically it seemed as if she was running “multiple marathons,” but they had no idea why. 

The neonatologist then explained to us that The University of Michigan C.S. Mott Children’s Hospital, located over an hour away, was sending a helicopter to come get her.  I’ve worked in Michigan hospitals for the last 10 years.  Mott is the best children’s hospital in the state, if not the surrounding three or four states.  They only take the most urgent/serious cases from across the Midwest and when they send a helicopter to another hospital, it’s because a life needs to be saved.  That is when I knew this would be a long uphill climb.

The cardiologist said that she may need ECMO (Extra Corporeal Membrane Oxygenation) and it is considered the highest form of life support.  It bypasses your heart and lungs, taking blood out of a body, removing carbon dioxide, adding oxygen and then pumping it back in allowing the heart and lungs to rest and heal.  

This is technology that was invented in the mid-80’s and carries roughly a 50% survival rate. Obviously as we were told this, we immediately started Googling it.  Those statistics were less than optimistic. My husband Matt, looking for a straightforward, authentic and real bottom-line opinion asked the neonatologist how sick he really thought she was. The doctor said, 

“This is the second sickest baby I’ve seen this year. “  

That made us take a breath.  I remember thinking, 

“God is this how it will end? Right after I just met her? 

“How do I tell Emma that her baby sister died?”

Emma had been so excited to have a sister. She and I would talk all the time about what it would be like to play with a sister. They would share a room, play with dolls, dress up and be best friends for life. How do you even begin process this? 

We returned to our room to begin to debrief.  When it comes to social media, we are fairly private.  We don’t say much publicly on Facebook, but I told Matt that we needed everyone we knew to begin to pray for Ellie as soon as possible. So he took to Facebook and posted our first update.  Pretty soon prayers began to rise from every corner of the globe.  We truly felt a peace and grace enter our room.

The LifeFlight team from University of Michigan hospital arrived along with what felt like 100 pages to sign for the relocation and treatment. They were going to put Ellie on a few medicines on the way to U of M hoping that they would improve her breathing. We had to wait at the hospital until 5pm.  My doctor had approved a special early discharge nearly 2 days early than recommended.  Everything inside of me wanted to leave immediately, but the nurses reminded me I had just given birth and they needed to monitor me for at least a few hours. I heard it said before that God had me in a “bubble of peace” and honestly that is exactly how it felt.  I did not break down.  I didn’t even cry during those few hours that we were apart from Ellie.  God was surrounding us in peace and preparing us for what was to come.

Less than eight hours after delivery they discharged me and we headed off to Ann Arbor. My OB/GYN continued to check up on me, making sure I rode in a wheelchair, was eating well and drinking enough water.  Constantly reminding me that I just gave birth. In a situation like this, it is very hard to think about yourself. Regardless of just giving birth.  

As we were driving to Mott Children’s Hospital the gravity of situation started to hit me.  I remember thinking to myself over and over 

“God is good even when life is not.”

Unfortunately, we began our drive during rush hour so it took us a grueling three and a half hours to get there.  After just giving birth you feel every turn, every brake, every speed bump on a whole new level.  We arrived at the hospital at around 8:30pm almost 12 hours after we met her.  I was excited to see Ellie and our spirits were high as we entered the NICU.

The worst night of my life…

We arrived, parked, found a wheelchair, went up to the 8th floor and checked in.  I could not believe Ellie was in an ICU. I was still in a state of shock. I pushed my feelings aside and hurried to find her room. I was very eager to get any new information from the last time we saw her.

We entered the NICU and started walking down a long white hallway.  The size of this place was something I had never seen before.  There were some 50-plus private rooms in the NICU.  Each one home to a baby hooked up to countless cords or laying sedated in an incubator.  Each baby surrounded by a family who looked back at us through their window with straight, blank faces, emotionally and physically exhausted from the current status of their life. 

Ellie’s room was located down at the other end of the floor.  It felt like forever to get to her.  Matt wheeled me in and there were about five nurses in her room setting up machines, adjusting cords and getting her settled.  It was surreal, in a nightmare sort of way.  

I started to try to bond with her, but it was near impossible to not focus on everything happening around her. This is not the birthday that I had imagined for Ellie.  This was not the way my baby and I should be spending our first day together.  Not only was I completely blindsided by what happened, but no one could tell me why it happened.  The doctors still had no idea what went wrong, how to prevent it or if it would happen again.

At this point, we had been up since 2:00am and were exhausted from the day. We asked the staff if there was a place nearby we could stay for the night and because of Ellie’s condition they offered us a room down the hall, only about a minute’s walk from her room.  

At that time of night, there were no doctors on call so we would have to wait until the morning to get an update or prognosis.  All we could do was wait, but there was no space in her room for couches or chairs.  They had removed anything comfortable and replaced it with a piece of heavy machinery or computer that was actively performing one of Ellie’s basic functions.  Even if we wanted to stay in the room, there was nothing more than a hard plastic chair to sit on (not the most comfortable place to be after giving birth). So we retired to the room to get a few hours of sleep to get ready for an early morning meeting with the doctors. 

One hour later we were abruptly woken up by a nurse frantically banging on the door.  I answered and she said “Hurry.  Don’t delay.  The doctor wants to see you.” We got up, quickly threw shoes on and hurried down the hall to see about 25 doctors and nurses standing in and outside of Ellie’s room. Again, our hearts sank.

I have worked in the hospital for many years. At that time of night, you don’t have 25 doctors and nurses in a room like that. We walked in and the doctor introduced herself and said,

“Ellie is a very sick baby. Please, she needs you right now.  You need to say goodbye because she is not doing well and will not make it.  You can grab her hand and talk to her if you’d like.”

The doctors and nurses began to step away into the hall one by one. They had done everything they could but it just wasn’t good enough. 

We noticed the pulse ox reading was in the teens…14, 16, 19, 20, 17, 16, 13.

I immediately went to the corner of the room and started wailing. I am not sure I can describe the kind of pain (physical and emotional) that I felt in that moment.  Matt immediately walked up to the left side of her tiny plastic crate, grabbed her left hand in his right hand and her left foot in his left hand and started to pray for her.  He asked me to join him, but I physically could not. It’s not that I didn’t want to pray, but I am not sure I could utter one word of faith in that moment.

I asked the doctor “Can you start ECMO?”  She answered “No, because we wouldn’t’ be able to get the tubes through her carotid artery. They are almost closed at this point.”


Write the Word Bible Journals

All I could do was cry. All other medical staff was out of the room at this point except for one nurse.  She walked up to Ellie’s right side, grabbed her other hand and foot and started to pray alongside my husband.  He began to intercede for her.  He only remembers saying “Life in Jesus name.  You will live in Jesus name.  By His stripes Ellie is healed in Jesus name.”  

Over and over claiming life in the name of Jesus.  He watched as the pulse oximeter continued lower and lower.  13, 11, 10, 8, 7…Ellie only had 7% of the required oxygen that her body needed. 

As Matt and the nurse continued to pray, her levels began to go back up.  Over the course of 5-10 minutes her level stabilized and dramatically increased, 10, 15, 20, 25, 30, 35, 40, 45, 50, 55, 60.  When the doctors had given up and told us to say goodbye, my husband and a stranger stood firm and filled with hope and faith battled for her life.  Then God showed up. 

The medical staff began to fill the room in.  The doctor who had just told us to say our last words to our new baby now said that we needed to leave the room because she was now stable enough to attempt ECMO.  They were not optimistic that she would last through the procedure.  

ECMO requires opening up the carotid artery in the neck and inserting two plastic tubes down through the aorta and directly into the heart.  One tube takes blood out, the other puts it back in.  Doctors were worried that Ellie’s veins and blood vessels were too constricted and her body was too weak for such a procedure.  Several times they told us that her odds were not good.  Then they escorted us to a small room across the hall.



The next four hours were the longest of our lives.  Every minute felt like an hour.  We sat in a sterile white room with nothing but two chairs and a box of Kleenex.  

We rode the waves of faith, uncertainty and despair.  

One minute we cried and the next minute we sang worship songs.

In those moments, your mind plays tricks on you – taking you from dreaming about miraculous healing to making funeral arrangements.  I honestly couldn’t utter a prayer. I tried so hard. My momma’s heart just cried and sang to Jesus.  We sang “King of my Heart” by Bethel. There is a line in that song that says “I know you are good. Every time you are good. You’re never going to let me down.”

I remember saying to God “I trust you Jesus.  Even if this doesn’t end up how I want.  Even if Ellie goes to heaven I will trust you Jesus.” Obviously I did not want her to die, but I knew that if she did die that my love for Jesus would be the same. I still trusted in a God who loved me and my little girl deeply, and wept with me during this trial.

The doctor entered at about 2am and said, “it took a lot longer than expected but she was successfully placed on ECMO. We are not sure if she will last through the night.” 24 hours after my water broke, we finally had our first piece of good news.  We told the doctor that we were going to bed and she said, “Are you guys ok?”  We both managed to squeeze out a “Yea.”  She looked quite surprised and said “Wow, I would be a puddle on the floor right now if I were you.”

(2 am after being placed on ECMO)

The only way we could explain not being a complete mess was a supernatural grace around us and the glorious fact that she was alive after being told she would die. 

The next morning…

 There is a verse in the Bible that says:

“Yet this I call to mind and therefore I have hope: Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness” Lamentations 3:21-23.

We woke up devastated, but not defeated. We knew the hope and healing that is available to us in Jesus.  We knew that He cared so deeply for us and that we were not alone.  Even though we did not understand why this happened, we knew that we could go on and still praise Him even though our circumstances looked bleak. 

We walked into her room that first morning and noticed they added a bunch of wires to her head.  The nurse explained that she had 11 seizures from 2am to 7am after going on ECMO and that the EEG monitor connected to her head would pick them up if she had more. Regardless of whether she lived, we knew the possibilities of long-term brain damage.  Something new to believe for.  Would she be brain-dead or mentally handicapped?  Would we ever get to take her home with us?  These questions were swirling in my head, but I knew that God was faithful. 


Write the Word Bible Journals

Each morning in the NICU, the doctors and nurses working first shift would go room by room talking through each case and the plan/goals for the day.  They would start each day with the most serious cases and work their way down.  

That morning they started with Ellie at 7am sharp.  We quickly found their meetings were filled with lots of useful information including what they were planning on doing with Ellie for the day, new information on what they thought happened and anything else pertinent for the day or week.  Matt took meticulous notes.  They told us that out of 50 plus babies on the floor she was the sickest one in the NICU and that they were concerned that her organs may start to shut down because of how long they were deprived of oxygen. 

At this point we had no idea if she would ever come out of this.  I felt numb. I went through waves of sadness, contentment, grief and peace.

They say in the NICU that each day feels like a rollercoaster…up and down and up and down. Some of the common emotions you may feel are: numbness, sadness, happiness, contentment, joy, pain, sorrow, disappointment, fearful. These are all NORMAL feelings and you may feel these all in one 24-hour period. My husband and I willfully chose not to ride this rollercoaster. You are not able to choose your child entering the NICU, but what you are able to choose is your emotions everyday. I am not saying everyday was easy for me.

Day 3 of Ellie’s NICU stay one of our main nurses asked me how pumping my milk was going. I told her that I had decided not to and she asked me why. I told her “I don’t know if she is going to live and so I would rather not have the pain of death and all that goes along with breastfeeding.”

She responded “You know you didn’t cause this right?” I bawled.

Of course I KNEW that, but as a mom we always blame ourselves even if we do in fact know we did not do something wrong. She said “We ask moms who don’t use their milk to get donor milk for the babies. It is necessary in the NICU.” At that moment in time I decided to start pumping but also had a peace in my heart that she was going to pull through this.

We decided that day to do several things that would spiritually take action and wage a ‘counter offensive’ against what the enemy was attempting to steal from us.

First, every day we talked with the doctors, wrote down all of Ellie’s goals for the day and posted updates on Facebook with new prayer requests and testimonies. We were not general in our prayers; we didn’t just pray for healing.  We were purposely specific.  We aimed small in our prayers attacking each goal by name.  We shared these with the world and our incredible community stepped up to pray alongside us.

 

Next, we wrote a list of declarations, posted them above Ellie’s bed and posted them on Facebook.  When we didn’t know what to pray, we read those statements. Every morning and every evening before bed I’d read them over her and people around the world printed them out and read them with us daily. 

“Faith is the substance of things hoped for and the evidence of things unseen.”  

Our declarations spoke to who Ellie was in our hearts and minds and who God created her to be, not what we saw in front of us. Like your creator, who created you in His likeness, you have the power to create worlds with your words.

We created an atmosphere where God can move.  An atmosphere of honor – a place where He is welcome.  We played worship music constantly in her room.  We purposely chose to limit who visited her to ensure that negative or faithless voices would have no influence in our life during those moments.  We surrounded ourselves with others with strong faith who came, prayed with us and built us up during those times. 

 We kept praying…   

Don’t stop.  When you think you can’t, keep going. Keep fighting for your baby.

On that first day, as we employed these Biblical strategies we began to see specific miracles take place.  Each time we agreed for God to move He did.

Ellie’s Updates on Facebook…

24 hours later she began processing oxygen on her own.


24 hours later she was taken off several medications, became very active and her kidneys began functioning at full strength.


24 hours later she successfully completed a trial off of ECMO.


24 hours later she was taken off of ECMO.


12 hours later she was taken off of the ventilator, began breathing on her own and moved to a CPAP machine. Melissa was able to hold her for the first time since she was 18 minutes old.


24 hours later she was downgraded from a CPAP machine to a simple nasal cannula. She’s began feedings and will try to breastfeed tonight.


7 days after her birth, doctors and nurses said that in more than 20 years of experience they have never seen a baby come off of ECMO and a ventilator on the same day. This level of recovery is simply unprecedented in the medical field.


7 days from her birth, we began talking about transferring her to a hospital closer to home.


12 days after her birth we transferred back to the hospital I delivered at to work on feeding and weaning from her hydrocortisone medication.


13 days from her birth she completely surpassed her goal of eating, which was 80cc’s, and fed consistently every 3 hours 100cc’s plus without fail.


14-25 days after her birth she continued to be a light to everyone who met her. We had multiple people tell us they didn’t believe in God until they heard about Ellie’s story. 


25 days after her birth we went home with a perfectly healthy baby.

 

We were in awe of Jesus and all He brought us through. We continued to have amazing miracles at home. We saw her cortisol level go up through the power of prayer. We saw her muscle strength work consistently on either side of her body through the power of prayer. We saw her eating and sleeping through the night just like a normal baby. 

The NICU is hard and draining. No one expects to have a baby in the NICU. This is not in the way you had envisioned the birth of your baby. We stayed in the NICU for 25 days and I cried almost every day of that stay. There are many different NICU stays…Life or death, critical, stable, etc.  Even if your baby is doing well, you have so many things pulling in your direction. If you have other kids, you feel bad leaving them at home. If you go home, you feel bad leaving your baby in the NICU. You usually aren’t getting enough sleep because it’s next to impossible to sleep there. You are asked to pump every 3 hours, while still feeding your baby a bottle every 3 as well. The constant flow of information between the doctors, nurses and support staff really can overwhelm you at times.  

When you leave the NICU, you have to be very careful with a once medically fragile infant. I was told by her pulmonologist that I had to quarantine her until the flu/RSV season was over and those seasons end in May. I had to stay in the house with her from December until May unless we went to a doctor appointment, which was incredibly difficult for me with two other children in the house.

Also, when you leave the NICU, you don’t realize that you will spend most of that first year at a specialist’s office. Ellie has had no less than 10 appointments a month with different specialists and therapies. At times it has been fairly exhausting keeping up with all these appointments all the while trying to keep a home up with three kids. I have learned so much about how much a person can be stretched without breaking. You don’t realize how strong you are until you have to be strong.

When life’s first moments are the hardest, it takes awhile to heal from the trauma. What you don’t realize being in the NICU is that you are running on adrenaline and as soon as you leave it’s like all of the time you spent being strong collapses and you are able to fully feel every emotion you were stifling to be strong.

I left the NICU with a healthy baby and had an incredibly difficult time for a few months. I knew that she was healthy and it made me feel so guilty because I knew that there were many babies and parents who did not have the same fate as Ellie and I.

I felt a lot of grief with her NICU stay and had to realize that I had lost something even though she came home healthy. I felt loss and grief that she would die, loss and grief that she was even there, loss and grief that it’s not how I pictured it in my head, just plain raw grief.

I realized that it was a normal feeling and a part of the process of healing.  I allowed myself to feel and process every single feeling that I felt the first few months after the NICU stay. It was hard because Ellie’s situation was so unexpected. I am the type of person that can deal with tough situations well if you give me a practical how and why. The doctors still cannot tell me how or why all of this happened because there was no birth trauma, no accidents…nothing. So even though her situation took an incredible turn upwards, the fear of what could happen again continued to haunt me.  

Even though the NICU was an incredibly hard place to be, we’ve experienced the darkest and brightest pieces of human life. From a glimpse of the depths of death to the supernatural intervention of God breathing new life. From the vast potential of human hands and minds to the power of the unity of thousands of people coming together in spirit for one cause. It’s been like watching every sermon, verse, devotional, word on faith and healing happen in front of my eyes in real-time.

 

I can tell you from first hand experience that these truths are things you can build your life and your faith on:
“His mercies are new every morning,” 
“His burden is light,” 
“He gives you rest when you’re weary,”
“He does what’s best for those who fear him”
“His powerful Word is sharp as a surgeon’s scalpel,”
“Where two or three gather together, He is there among them”
“One can chase a thousand and two shall put ten thousand to flight.”
“Faith is the substance of things hoped for and the evidence of things unseen.”
“God causes everything to work together for the good of those who love Him”

  “He is love,” all-powerful, the Prince of Peace, a God who provides, just, holy, a healer, all-knowing, everywhere, merciful, compassionate, sovereign, a comforter, full of grace, faithful, and He is our father.

It’s a beautiful thing to say that you’ve witnessed and experienced those things.


Throughout this entire process, my husband and I have slept through the night. We’ve woken up every morning and gone to bed every evening in peace. We’ve laughed. We’ve bonded. We’ve kept each other positive and encouraged regardless of what was coming next.  We’re thankful for each other and we’re so thankful that God keeps each and every one of His promises. I am so grateful for this time in my life – for my faithful God, my husband, my family, friends and for my beautiful Ellie, who taught me so much about Faith.

{Family Photos taken by Sarah Sutherland Photography}

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