~a glimpse of life...a bit of this...a bit of that~

Sunday, January 5, 2014

Elijah's Story~

My son would have turned 13 today.

How can that be?

How have 13 years passed since Elijah was born...and died. 

Time has reduced the rawness of the wound and the grief comes more gently, but the hurt will never be completely gone.  My heart aches for what could have been and my eyes blur with tears...my mind races with questions and my soul yearns for answers.

But I also have peace...peace that my God is Sovereign, peace that my God is good, peace that my God knows my heart and counts my tears, peace that Elijah is living in heaven, peace that I will know him one day.

King David said this about the death of his infant son...and God chose to record it in the Bible...it gives me much hope.

"I will go to him, but he will not return to me."  2 Samuel 12: 23

Steve and Elijah...in Daddy's arms~
As Elijah's birthday neared, I thought about what I wanted to write.  And I decided to simply tell the story of our son.  

It's long because I wanted to remember and record...join me if you'd like.

Steve and I learned we were pregnant with our first child just a bit before Mother's Day in 2000...we were so excited!  And I had a great beginning of the pregnancy...there were no indications that anything was wrong or there was anything to be concerned about.  

Meanwhile, Steve accepted a job with a company in Boulder, Colorado, so we were planning a move from NC that fall.  With all the busyness of planning a move, I didn't have my 20 week ultrasound until I was 22 weeks, on September 20, 2000.  Sometimes I still wonder if that two week difference could have saved Elijah.

In the morning, Steve and I went to my doctor's office and excitedly got ready for the ultrasound.  My Mom was there too...we wanted her to see her first grandchild :)  

Very quickly into the ultrasound, we knew something was wrong.  The tech doing our scan was all chipper and then got very quiet and then said she needed to get the doctor.  I remember sitting up, trying not to panic and feeling like I was going to be sick.  Steve thought he saw two babies.

The doctor came in and took over doing the ultrasound and explained that our baby's bladder was so full of fluid that it was the size of his head...that's what Steve was seeing...bladders should be small.    

We were immediately sent to a perinatologist.  We arrived at his office and didn't have to wait at all...it was frightening.  Another ultrasound...him explaining what he was observing, referencing medical books, him making calls to doctors, Steve next to me holding my hand...all while I laid there trying to process the torrent of terrible information.

Our baby had a blockage and was not able to completely cycle his fluid and it was all stuck in his bladder.  Being able to cycle the amniotic fluid is very important...breathing in the fluid actually helps lungs develop and the kidneys are also adversely affected when there is a blockage.  Also, there was almost no amniotic fluid in the amniotic sac because it was all trapped in Elijah's body...a baby at Elijah's stage in pregnancy should have had about 500 cc's of fluid, but our son had only about 10 cc's.  He was wrapped up tight instead of floating...this was all very dangerous.

Elijah was diagnosed with Lower Obstructive Uropathy...our doctor also called it Prune Belly Syndrome...and the statistics were horrible.  1 in 30,000 to 40,000 births.  A low survival rate.  Thankfully, the survival rates are somewhat better now.

I had my first of many, many amniocenteses that day.  Our perinatologist, and those he was in contact with, needed to know how our baby's kidneys were doing.  That info would determine if and/or how we could proceed.  And this amnio was extra tricky because they had to get a sample of fluid from Elijah, not "simply" from the sac because there really wasn't any fluid where it should have been.

I think waiting for medical tests is one of the worst things in the world...the worst.

We were told to be prepared to travel because IF anything could be done, it could not be done in NC...we were heading to children's hospitals in either San Francisco, Denver, or Philadelphia because they had specialists who had experience with babies like our Elijah...it all depended on how his kidneys were doing.


Emotionally drained does not even begin to describe how we felt leaving the doctor that day.  I was filled with fear.  I tried to pray, but it was more like desperate pleading wracked by sobbing...fear that soaked into my bones...and then strange times of numb disbelief and even peaceful hope.  


One thing that I do remember very clearly is that first night...after all the tests, the praying, the crying, the fear.  I remember lying in bed late that night, beyond physically and emotionally exhausted yet wondering how I was ever going to sleep and I saw Psalm 86 flash in my mind...I can even still remember the font in the image/vision.  I did not know what was in Psalm 86, so I opened my Bible and read.  


Psalm 86

English Standard Version (ESV)

Great Is Your Steadfast Love

A Prayer of David.

86 Incline your ear, O Lord, and answer me,
    for I am poor and needy.
Preserve my life, for I am godly;
    save your servant, who trusts in you—you are my God.
Be gracious to me, O Lord,
    for to you do I cry all the day.
Gladden the soul of your servant,
    for to you, O Lord, do I lift up my soul.
For you, O Lord, are good and forgiving,
    abounding in steadfast love to all who call upon you.
Give ear, O Lord, to my prayer;
    listen to my plea for grace.
In the day of my trouble I call upon you,
    for you answer me.
There is none like you among the gods, O Lord,
    nor are there any works like yours.
All the nations you have made shall come
    and worship before you, O Lord,
    and shall glorify your name.
10 For you are great and do wondrous things;
    you alone are God.
11 Teach me your way, O Lord,
    that I may walk in your truth;
    unite my heart to fear your name.
12 I give thanks to you, O Lord my God, with my whole heart,
    and I will glorify your name forever.
13 For great is your steadfast love toward me;
    you have delivered my soul from the depths of Sheol.
14 O God, insolent men have risen up against me;
    a band of ruthless men seeks my life,
    and they do not set you before them.
15 But you, O Lord, are a God merciful and gracious,
    slow to anger and abounding in steadfast love and faithfulness.
16 Turn to me and be gracious to me;
    give your strength to your servant,
    and save the son of your maidservant.
17 Show me a sign of your favor,
    that those who hate me may see and be put to shame
    because you, Lord, have helped me and comforted me.

I'll be honest, I clamped on to verse 16 pretty fiercely, desperately hoping that Elijah would live.  In the years since then, I have read this psalm numerous times...I know God sent it to me in a time of unimaginable need.  Verse 11 is one of my favorites and verse 13...well, it's just so beautiful...God's love is steadfast...even when it feels like your world is crashing.

The test results came back and we learned that Elijah's kidneys were still functioning, but not very well.  The traditional treatment would be to place a shunt from the bladder back into the sac so the bladder could drain and then further treatment when the baby was born.  Shunts can come out and need to be replaced and amniotic fluid is needed in the sac to place a shunt.  The doctors who were advising our perinatologist said there was nothing they could do to help our son because of the low kidney function and lack of fluid.  Dr. Hobbins in Denver recommended we contact a doctor in Florida who was doing some cutting-edge, experimental surgery that was helping babies with Twin-to-Twin Transfusion Syndrome.

And that is how we met Dr. Ruben Quintero in Tampa, FL.  Dr. Quintero had developed and was using laser surgery to operate on babies while still in the womb.  Most of his patients were twins, but he had operated on 13 other babies with our son's condition.  He was honest, the outcomes were not great...1/2 of those babies had not survived.  But we had no other medical hope for Elijah.  Dr. Quintero continues to save many lives with the treatments he has pioneered.  It was truly an honor to work with him.

We made plans for surgery on October 9, 2000.

But remember, we were also moving and had a house to sell and Steve had a new job to start...it was just a little chaotic.  And to add to the medical and general craziness, my Dad had broken his kneecap, which left his quadricep detached and had to have major reconstructive surgery on his leg right before Elijah's surgery.

Steve flew to Denver and began his new job while I stayed in NC.  I have an aunt and uncle who live in the Denver area so Steve stayed with them...love you Chuck and Amy!  My Mom flew with me to Tampa (that's where Dr. Quintero was practicing at the time...he is now in Miami) and Steve flew from Denver to Tampa to meet us.  Our perinatologist from NC also came to be involved with the surgery.  

The surgery went well and they thought they were able to clear a blockage, but the ultrasound the next day did not look as expected.  We were asked to stay in Tampa for the week to monitor Elijah.  By the following Monday it was obvious that the surgery had not been successful...his bladder was filling up again and the sac was empty of amniotic fluid.  So we had another surgery that day to place a shunt.  They added fluid to the sac, placed the shunt, and the ultrasound the next day was more hopeful.

So on Tuesday, October 17th we finally left Tampa.  My Mom and I flew back to NC while Steve flew back to CO.

I continued preparing to join Steve in CO and on Friday I had an ultrasound with my perinatologist.  It was a bad appointment.  The shunt had already pulled out.  Elijah's bladder had extra fluid in it again.  My amniotic fluid levels were low again...even with the amount he had in his bladder, some was "missing".  It's still a mystery where the fluid went.  But the worst news was that cysts had developed on his kidney's which indicated that his kidneys were failing.  It was scary and distressing and there was not very much to hope for. 

Dr. Quintero called me that night and wanted me to return to FL for one last try.  I was such a mess and Steve was far away.  We decided we needed to be together, so I got on an airplane the next day and flew to CO.  We called Dr. Quintero together and discussed the situation.  

We prayed, we cried, we tried to figure out how to proceed.  It wasn't as easy as "just do another surgery".  Elijah's kidneys were clearly failing and, apart from a miracle, kidneys don't just turn back on.  With each surgery, we increased the risk of me going into labor and Elijah being born too early and too sick for there to be much hope of him surviving.  But if we didn't do anything, was there any chance of him surviving?  And with each surgery, we also risked trauma and damage to my womb and the hope of future children.  

Ultimately, we decided to try one more time.  We felt like we had to do everything we could to give our son a chance at life.  The next day we flew to Tampa.  On Monday, our day started with another ultrasound.  Elijah's kidneys had even more cysts and were no longer functioning.  Medically, there was nothing more that could be done and Elijah's chance of living dropped to 0...0% chance of survival outside of the womb.  How do you process a diagnosis like this?

It was surreal.  I remember Dr. Quintero's soft voice telling us he was sorry.  I remember the dimly lit room and "dotted" kidneys on the screen.  I remember how sad and devastated Steve looked.  Everything moved slowly...and grief clawed at my heart...we were undone.

We left the hospital and went to the airport to catch a flight back to CO...and that is how we started our new lives in a new state.  

My aunt and uncle graciously opened their home to us and we lived with them while we waited for our home in NC to sell.  We quickly began looking for a new church and God kindly connected us with a church pretty quickly.  It was good to be with believers, but we sure did miss our family and church family back in NC...it was a very hard time to move.  

I don't remember where we learned some of the info about what the death of a child can potentially do to a couple, but we did...and we resolved to fight for our friendship and marriage...and our faith.  And God was kind to meet us in the trenches.  Our strengthened faith and marriage is one of the blessings to come out of such tragedy...we praise God for this.

The last trimester of my pregnancy was hard...physically, emotionally, spiritually.  Trying to make new friends when you're obviously pregnant, but having to tell people that your child is dying...well, it just wasn't a good conversation starter.  But I do thank God for those He brought into our lives who didn't shy away...some of those friends are especially treasured :)  It was also hard with some of our friendships back in NC...many, many, many supported us tremendously, but there were some who simply could not handle it and the friendship faded.  And that is how it goes with life...some friendships fade and some grow deeper.

One of the hardest things for me was the "random stranger".  The lady at the coffee shop who asked when I was due.  The new mom at the grocery store who smiled and told me motherhood was great.  The cashier who asked if I was having a boy or a girl.  I usually just smiled and answered their question, saving my tears for later.  I was afraid of depression, so I resisted the desire to stay at home and never go out, to never face people.  One time I actually told the "random stranger" that my baby was dying, that he had a rare condition, that we had had experimental surgery to to try to save him...she looked at me in horror and she simply had no idea what to say...I guess that didn't go so well...maybe it was even unkind of me to tell her...I don't know, sometimes it just got hard to pretend.  I turned back around in the line we were in and desperately tried to hold it together...it's weird because I can remember what I was wearing for that "conversation".

I knew from reading and research that making memories was very important to couples who faced infant death.  I wanted pictures and memories.  Steve and I were updating a growing prayer list via email (this was before Facebook and blogs :) and I kept all the messages sent and received.  I took all those messages and turned them into a scrapbook.  I still wanted Elijah to have a special outfit, so my Mom and I went to a nicer department store when I was in NC for a visit.  I picked out something and was expressing my concern that it wouldn't be warm enough for a baby born in winter when I realized mid sentence that it wouldn't matter anyway...Elijah would not be coming home.  That was a hard purchase...the bubbly clerk helping to wrap up my special purchase.

I had very regular doctor appointments with my new doctors in Boulder.  They were wonderful to work with...so compassionate and encouraging.  They kept close tabs on Elijah and he continued to do okay in utero.  His kidneys continued to develop more cysts.  Medically, the question was when would Elijah die.  Steve and I had to live and make decisions based on the truth that we knew our God could still heal Elijah, but we also understood what the medical prognosis was for our son.  It was a delicate and difficult balancing act.  

At one point, I just didn't want to be pregnant anymore...I just wanted it to all end.  We had been counseled that we could legally terminate the pregnancy..."terminate"...such a sad word to use for a life.  Steve and I knew we would not and could not choose that option, but I did began to pray for Elijah to die...I even asked others to pray for that too.  It seems like such a horrible prayer now.  God did kindly bring me to a place where I quit praying that prayer and, instead, saw Elijah's continued life inside me as a blessing.  But it forever changed how I view abortion.  I still do not support abortion, but I found myself having more compassion for women who find themselves in situations where they feel like they have no other options.  I had the incredible support of my loving husband, of precious family, of dear friends...and I wished my pregnancy would end...what was it like for women who had none of that support and felt like they had no where to turn? 

We still had to prepare for childbirth, but obviously it was not the best option for us to sign up for the next birth class offered by the hospital.  The hospital put us in touch with a social worker who gave us a private birthing class.  She was trained to work with couples like us and she helped us so much to navigate some of the decisions we had to make.  She gave us info on pediatricians (yes, we still needed to decide what pediatrician we would use because he would need to be there when Elijah was born), what funeral home we wanted to work with, what documentation we needed to make sure everyone at Elijah's birth understood the situation.  We had to legally detail Elijah's condition and prognosis and that we did not want any "heroic" efforts.  We knew our time with him would be short and we didn't want someone taking him away and trying all sorts of procedures on him to make him live.  We knew that it was his lack of lung development that would actually take Elijah's life.  He would try to breathe, but wouldn't be able to, so our doctors planned to have medicines ready to help him if he began to struggle.  How do you possibly prepare yourself for watching your child suffocate?

And we had to make a trip to the funeral home.  How does one decide which kind of urn you want for your baby's ashes when you can feel him moving around in your womb?  

We knew we had to plan Elijah's birthday.  Elijah's due date was January 18th, but we chose January 5th as his birthday...I would be 38 weeks pregnant and we had peace about waiting until Elijah was full term.  We knew we had to plan for family who wanted to try to be there and we didn't want to wait until closer to his due date in case I went into labor naturally...family would miss meeting him if that happened. 

That morning was very strange.  We were nervous and we knew what the outcome would be, but we were also looking forward to meeting Elijah.  It was such a mix of emotions.  God bathed us with His peace...the peace and faith we had through the whole experience can only be described as God's grace upon grace poured over us...we didn't muster any of the faith or strength ourselves...thank you, Lord for your care and protection.

Labor was induced and all progressed well.  I endured contractions until I couldn't handle them any longer and then got the blessed epidural...yes, a blessing!  Family members were there.  Friends from our new church were there praying all day.  

Elijah Shawn Gonzales was born at 10:08 pm on January 5th, 2001 in Boulder, Colorado.  He weighed 6 pounds, 5 ounces and was 19 1/2 inches long.  They put him on my chest and I cradled him.  He made one, small, precious cry.  They cleaned him up, bundled him up, and handed him back to me.  He looked at me with his gray blue eyes, tucked his hand under his chin, and then closed his eyes.  He never opened them again. He very calmly stayed snuggled with me and Steve.  He never struggled to breathe and no medicines were ever necessary...he was so peaceful.  Our family met him, we took pictures with him, an elder from our church prayed over him, we talked to him and told him how much we love him.  I told him not to fight, to go home with God...that we would see him again.  He died in Steve's arms at 11:48 that night...born into God's Kingdom.  

Precious Elijah with Mommy and Daddy~

Family~  From left: Steve (Steve's Dad), Heather (Steve's Mom), Karen (my Mom), me and Steve and Elijah, Brandon (Steve's brother), and Harvey (my Dad)~

Sweet kiss~
Elijah with the blanket my Mom had made for him~
We made as many memories with him as we could.  We got his tiny, sweet foot prints and a bit of his reddish hair and we took pictures.  In the wee hours of the night we knew it was time to say goodbye...there is no way to prepare.  I watched the kind nurse (who had sang over him when she cut a bit of his hair for us) gather him into her arms.  It took all of my control not to grab him back.  A hundred screams welled up, but they only revealed themselves as little sobs.  I watched her walk away with my baby son...the finality of death was crushing.

Steve joined me in the hospital bed and we tried to process the day's events and rest...we were emotionally, physically, and spiritually exhausted.  As we rested, cuddled close in the small bed, Steve suddenly jolted upright.  He told me that he had been praying and had a sense that angels surrounded us.  The presence of the Lord was so strong that Steve thought he might actually get to see one of God's angels...but he didn't...but it was sweet to know the Lord's closeness.

"The Lord is near to the brokenhearted and saves the crushed in spirit."  Psalm 34: 18

Elijah, we love you~

I think I'll stop there.  If you read this entire post, then you should get an award :)  

Many blessings~
Rach

1 comment:

  1. My birthday is the same day as his. And I read your tributes to him, and God, every year. Many blessings to you and your family today

    ReplyDelete