Visit to Children's Hospital

On Tuesday, Nate and I ventured to Milwaukee for our appointments at Children's Hospital.  It was a long, tiring day.  The drive was fairly stressful, and we got the sense that the entire city of Milwaukee is under construction.  Fortunately, we left with plenty of time, so we were still quite a bit early for our first appointment - an ultrasound of Elijah.  Unfortunately, the ultrasound dept. was running very late, so we were there for over 2 hours before we actually got to the appointment.  What I didn't expect was how difficult the ultrasound was going to be.  Elijah was moving and kicking the whole time, which was really neat, but to our eyes, his encephalocele looked alarmingly big.  He also was measuring a bit on the small side.  The tech was very kind, and got some great images of his face, but that was heartbreaking in a way too.


Then we saw the neonatologist.  We couldn't have asked for a better doctor.  He was kind, thorough, realistic and yet optimistic.  There was no mention of terminating Elijah (thank God!), and the doctor said that everything will be done for Elijah that can be done.  The major unknown is what will be able to be done, and that depends on Elijah.  The larger and more brain tissue that is involved with his encephalocele, the worse his prognosis.  He still is at high risk for still birth, death shortly after birth, and if he does survive will face disabilities.  But where things will fall on that spectrum is still very unknown.  And that is really, really hard. 


We also saw a maternal fetal medicine specialist, and she reiterated much of what the neonatologist had said, but also emphasized that there was nothing that could have prevented what happened to Elijah, and that even my age is not a factor (something that has be haunting me a bit.)  She wants us to return to Children's in 4 weeks for another ultrasound, including an ECHO with a cardiologist because they thought that the left side of Elijah's heart may be a bit small.  We will also see the pediatric neurosurgeon that day.  We were supposed to see him on Tuesday, but that appointment got bumped because of our ultrasound appointment being so delayed.  The neonatologist did say that the most likely plan will be that Elijah would have brain surgery within the first week of his life if he was stable enough to tolerate it.


We've spent the last two days since our appointments kind of reeling.  I think it's a combination of stress, exhaustion, trying to recover from some sickness that hit our family last weekend, and me dealing with a bum leg after one having a bad reaction to one of my progesterone shots.  But I think the biggest reason is that all this planning and talking made the reality of what we are dealing with really hit home.  We love this little boy, and it's so hard to have so many unknowns and scary potentials.  We're both pretty discouraged and anxious right now.  We still firmly believe Elijah is in God's hands and that He has a plan for him and for us, but it's just harder to feel right now.  We greatly appreciate everyone's prayers and support.

I forgot to add a couple of prayer requests:


First we'd like for prayers that Elijah's encephalocele does not get any bigger, and that no more of his brain tissue is involved in it.

That Elijah's heart is strong and healthy.

For peace and trust in our Lord.


For God to prepare us to be the parents that he wants us to be for Elijah:  able to withstand the uncertainties,  prepared for the medical treatments and procedures that may be in his future, the ability to be good parents to a child with special needs (God willing), and  to be willing to release him over to God if that is God's plan for Elijah.


Thank you, and please let us know if you have any prayer requests that we can offer up.

In Go(o)d Hands

     Today we had an ultrasound update.  The most important news has stayed the same: baby Elijah's skull did not close properly when forming and some brain material is growing outside his skull.  The condition is serious and the doctor has stated that about 50% of surviving until birth.  Of those that do, he stated 50% pass away in the first 30 days.  Of the remaining children 80% have developmental disabilities...
    The second most important news was Elijah's heart "looks good" according to the doctor.  That is big!  Praise God!  Many times with encephalocele there are other serious conditions, especially with the heart and other organs.  Elijah has - as far as we know - none of those.  As of this ultrasound he also does not have fluid building on the brain. 
     We were given some more ultrasound pictures and he's beautiful!
     We are being referred to Froedert Hospital in Milwaukee which is one of the only hospitals in the nation - and the only in Wisconsin - that does in utero operations if we were to need that.  But they also have a top notch neonatal neurosurgical group.  Within a short time of being referred Tricia was already on the phone with them setting up our day-long visit, meeting and testing appointment in a few weeks.  We will be assigned a nurse who will follow us through out the whole process until either we take Elijah home or God calls him to his true home.
     We were very struck by both the doctor at Aurora and the nurse whom Tricia spoke to.  The doctor remembered that it was important to us that Elijah be baptized if at all possible.  This from a doctor who sees difficult cases on a daily basis... he remembered little Elijah from almost three weeks prior.  The nurse from Froedert that Tricia spoke to was very caring, concerned for our who family's well-being and very patient with Tricia's questions.
    All this just goes to remind us that no matter the outcome we're in God's Hands.  We all are.
    God truly wants what's best for all us -not necessarily on this earth but what is eternally, infinitely good for us.  We know He's capable of a healing miracle and we'd welcome one if He so chose; but I pray that if my prayers are, when viewed from the perspective of eternity, asking for a snake, a scorpion or a rock, I pray that I accept God's bread, fish and eggs...
   
    Again, please know that we are praying for any and everyone of you who read this and / or have even given us a thought.  We believe God will give you what is truly good.  You're in Go(o)d Hands.

Hope found in uncertainty

    It's been a while since we last updated but life goes on.  Nate's been held over at work and had in-service which takes up a day off; Tricia's added "taxi driver" to her already busy homeschool schedule as the basketball and chess seasons begin.  We've also started teaching a self-defense class to some of the folks in the homeschool group.  Sometimes we find ourselves forgetting for a moment or two.  Sometimes it comes out as being more irritable with each other or blaming ourselves for something...
    Tricia got connected with a great group called Be Not Afraid.  They're a group who are all about connecting with, guiding and helping families with difficult pre-natal diagnosis'.  Tricia talked to them for over an hour and to say they were inspirational is an understatement.  What we learned from them is that it is common to give a 'worst-case' diagnosis (usually out of fear of being sued).  That there are many families who are given a "malformations incompatible with life outside the womb" diagnosis who's children have lived years beyond what was diagnosed.
    We were told about a family whose little boy, Johnathan, was given a 0% chance of living outside the womb.  The family documented Johnathan's birth and subsequent life.  They made two youtube videos about it.  They call them, "If you have a pulse... you have a purpose."  You can watch the videos part one and part two.  Their story is amazing!  Please watch if you have 10 mins to spare.  The videos are so life affirming!
    What we took away from the conversation is... uncertainty.  But in this case there is hope in uncertainty.  We were absolutely certain that Elijah Fulton Donald would not live long outside the womb.  But now we know that on the whole the doctors just don't know... and neither do we.
    So we live our day to day with uncertainty... about all of us.  We don't know if Elijah will stay with us till birth or longer or not... just like we don't know if Nate's next call is the one that God uses to bring him home, or if Tricia's trip to the grocery store is the last time the family sees her this side of heaven.  So we appreciate the time we have, the times we're together.  We try (stress 'try') to be more patient with each other and the kids; to hug more often and longer; to say 'I love you' more... to do all the things all of us KNOW are important, but never seem as urgent as the laundry or work or a million other things that all seem really urgent and important.

We have been praying for all the intentions we've gotten and for everyone who has thought of us and prayed for us.  Please if you have an intention, let us know so we can pray for you as well.

God Bless

The new (ab)normal

     We want to thank everyone again for their out pouring of support, love, dinners and above all prayers.  Please know that we are praying for every one of you and what ever your intentions are.

     One update: the doctor's office called and told us that the blood test was negative for chromosomal abnormalities.  Basically, that means Elijah does not have Trisomy 13 or Trisomy 18.  What does this mean?  We really don't know.  We go in for another ultrasound on Nov 8th for further scans on Elijah's heart.  One benefit we thought of is that our children won't have to worry about passing on the possibility of having children with Trisomy 13 or 18.

    We've been settling into the new "normal" around her.  Nate went back to work this past Sunday, which was hard on everyone but we were grateful for the Providence that Nate had vacation already scheduled last week.  Nate also had a good talk with a good friend at work.  The talk helped him a lot in more ways that he can put into words.

     Tricia started school back up on Tuesday, which was hard for all of us.  I think the younger kids were hoping for a longer vacation from school.  Tricia has also had some very meaningful conversations with friends, including some that have already walked the journey of letting go of precious babies, and has been uplifted by them.  The message she keeps hearing is that Elijah is a beautiful gift, entrusted to us by God, and that his life matters so much in this life and the next.

     All our children, but especially Claire Marie, have been a God send for our coping and healing.  Claire continues to greet everyone with a cute "Hi" and accompanying hand-wave.  All our children's hugs, kisses and snuggles - even our faux resistive 13 year old boy, Connor - are more precious than ever and have led to a seemingly greater peace about our life.

     Tricia's mom has also been a God send, spending more nights than not with us taking care of the day-to-day and being great company, support and Christian witness.

      Nate's parents have also stepped in, in an absolutely Amazing way, spending special times with the kids and driving them to / from their special activities.  (By the way Liam scored his first touchdown in his final flag football game with a great catch and run!)

     The dogs... have been less than helpful... though even their company has been appreciated.
    
     Almost every day starts with the sudden realization that little Elijah Fulton Donald may not be with us very long... and almost every day sees us crying at some points, laughing at others, but in general trying to pray more (for God's Will and our acceptance there of) and spending more time as a family.  Elijah's kicks have been very noticeable in the last week, a beautiful and bittersweet reminder that he is still with us.  This morning, in fact, Nate was able to feel the baby's kicks for the first time.  This reminds us that he is real, and with us now, even though his future (like the rest of ours) is uncertain.

    A bible verse has been going through my head as of late:  Romans 8:28  "We know that in everything God works for good with those who love him who are called according to his purpose."

Everything... God works for good...  even what YOU may be going through.  Even if we don't see the good, ever.  Know that a greater good WILL come out of whatever you're going through.  Not that God wanted the suffering to happen, but He will use it so a greater good will come of it than would have happened without it.  Look at the Passion and Resurrection for the ultimate example...

We want to walk this journey with you.  So if you have any prayer requests please let us know in person, or put them in the com box below.

God Bless you all,
Nate and Tricia

Our Story, What this blog is about

   We were married in August of 2000.  Being children of our time we did not have the greatest faith or much care beyond most secular concerns.  This began to change in the years after our first son was born.  Eventually, both of us returned to a devout Christianity.
    We both considered ourselves Pro-Life but that word has increased in meaning in recent years.  We had our first miscarriage between our first and second children; After our first daughter was born (4th child, 3rd living child) was born we thought we were "done."  God steadily weighed on our hearts to try for another.  We suffered another miscarriage.  We tried again immediately after.  This time we had an ectopic pregnancy that resulted in a 3rd miscarriage.  We were devastated.
    Through a series of providential events we found the Pope Paul VI Institute out of Omaha.  They specialize in finding out WHY a woman is miscarrying and naturally correcting the problem.  Most medical thought in these cases is very limited.  Most of the time a reason is not explored and instead of trying to fix the problem a woman's whole reproductive system is circumnavigated and over-ridden with IVF.  Instead Pope Paul VI institute uses NaPro Technology to help discover and treat the causes of miscarriage.  Through this we were able - through God's Grace - to have our 7th child (4th living, 2nd girl).
     A year and a month later we got another positive pregnancy test.  We were scared but ecstatic.  We decided to trust God in how we were going to be able to care for another child - yes we know many people (many of our friends) have even more children and care for them wonderfully; but it was a new thought for us.
     Then, within the week, Tricia began heavily bleeding.  We were sure we were losing another child.  We scheduled an ultrasound to confirm what we feared.  Against our fears, we saw an immediate heartbeat!  Our newest was alive and well!
      The thought of this newest life began to grow on us.  We settled into the idea of a family of 5 living children and began to make preparations for a larger vehicle, organizing our house to accommodate the extra person in a 3 bedroom home.
       This all came crashing down at the 20 week ultrasound.  Tricia was extremely nervous the night before and hardly slept.  We brought the whole family, for better or worse.  Again, we saw the heartbeat almost immediately.  We took heart from the ultrasound tech's difficulty getting the measurements she needed because baby was moving around too much.  After all the measurements we found out that baby was a boy!  We were so happy and breathed a sigh of relief.  Since the only thing left was a brief visit with the O.B. - the same O.B. we've had for all our children - Nate decided to take the kids down to the cafeteria for a treat.
      Just after Nate left the doctor came into the ultrasound room.  He was crying.  Tricia knew immediately that it was horrible news.  "I'm so sorry.  There's something very wrong with the baby."  Tricia only remembers screaming "No!"
      The kids had just ordered fish sandwiches and cheese curds.  Nate was annoyed that someone was calling the cell phone in the diaper bag.  As they were headed to the checkout, Nate was approached by a nurse.  "Are you Nate?  You need to come back to ultrasound right now."  Nate gave the 1 year old to the 13 year old and left.  He knew.  No one does this with good news.  Walking into the ultrasound room and seeing the tears streaming down Tricia's face told him everything.
     The next few minutes are just a series of shocks:  Baby's scull not closed.  Brain growing outside the scull.  Hands and feet not developing correctly.  There were other things, we don't remember, we didn't even really hear.
     Tricia held Nate close and whispered, "This child was meant to be.  God wanted this child and he has a purpose and value."
     Our doctor is a good man and a believer.  He looked as hurt as we were.  "I'm so sorry."  We had to get the kids and tell them.  We saw a specialist who told us it was most likely chromosomal: a tripling of the 13th chromosome and not survivable.
     We already had a name picked out: Elijah Fulton.  Tricia had an image of her deceased father reaching down and taking Elijah up in his arms.  She asked if we could add "Donald" for him. 

Elijah Fulton Donald is our 8th child.  He is a living person capable of speaking as powerfully as Fulton Sheen - one of Christianity's greatest orators of the last 100 years; calling God's fire down from the sky like Elijah did in the presence of the priests of Ba'al; and of teaching us how to live an authentic Christian life as his Grandpa, Donald, showed his family through his daily witness.

We are writing our journey starting three days after the 20 week ultrasound and continuing for as long as God wishes us, to tell Elijah's story.  A story of Love and Life.  A story so powerful we've already seen the power Elijah's story.... as powerful as calling fire down on the mountain.

Please don't expect professional prose, regular updates or even correct spelling / grammar.  This is just our raw, real thoughts when we have time to write them.  We're trying to focus on celebrating life with our family, NOW, while any of us are here.  We're trying to hug more, say "I love you more." waste less time on the computer and focus on our relationship with each other through our relationship to Christ.

Please pray for us and let us know your prayer intentions so we can use our suffering - as Christ did in His Passion.

Thank You

Hello to all our beautiful friends and family,

We just wanted to first and foremost express our overwhelming gratitude to everyone for the prayers, love, meals, and concern expressed to us this week.  We truly can feel the blessing of the prayer and support.  Even though this has been an extremely painful few days, we have been able to experience the joy of God's presence, and hope in midst of the darkness.  We apologize for not being in touch with each person who has reached out to us, but the grief process has been pretty exhausting and we're trying to manage the day to day needs and issues as they come.  As a result some things we're just not able to get to as we'd like.  But please know that we've read every message and it has truly touched us.

We have much uncertainty about the days ahead.  We really don't know at this point what is in store, or when.  We know that, at least at this point, the outlook for Elijah is pretty grim, at least in terms of an extended life in this world.  Thank God we have the hope for the life to come.  We truly believe in miracles, and that God can and will do whatever is his will, but at this point we feel called to focus on the facts we've been given so that we can make the most of Elijah's time with us and that we can cooperate with God's will.  We also believe that miracles happen in many ways, and we've already experienced some - including  the outpouring of love from you all.  We don't want to waste our suffering either, so we ask that if any of you have intentions we could be praying for, please let us know and we will offer our suffering for them.

As we are aware of the overwhelming prayer being done on our behalf, we were wondering if we could humbly request a few specific intentions of our own:

First and foremost, we ask for the grace and strength to cooperate with God's will in all of this and to draw closer to Christ.

We would like to ask for the ability to take good care of our other children in the midst of our grief, and that this experience may draw our family together closer.

That we can appreciate and celebrate Elijah's life for as long as he with us.  We also pray that he doesn't have to experience suffering.

For the wisdom of ourselves and our medical team to make the most life-affirming and compassionate decisions for Elijah's care.

For us to at least be able to hold and baptize Elijah.

For us to help our other children grieve, love and let this draw them closer to God.  That we have
patience with each other, ourselves in the midst of all of this.

That our grief doesn't turn into depression or despair.

That we can still laugh through our tears, with each other, with you and with God.

For God to use Elijah's life as a powerful witness to our culture.  We gave him a powerful name for a reason:  Elijah called fire down upon the mountain in the presence of the priests of Baal; Fulton Sheen was one of the best Christian orators of the last 100 years, he spoke clearly, boldly to our culture.  Donald for his Grandpa who was such an amazing, loving Christian man in this life and we believe is watching over his little grandson now, looking forward to bouncing him on his knee.

We have already seen our Elijah Fulton Donald's story bring someone back to faith, bolster Christians in their faith and cause someone to consider the faith again.  By God's Grace and your prayers our Elijah Fulton Donald will still speak as boldly as Fulton Sheen will and will call God's Fire down upon the mountain in front of our culture of Baal.

If you want to keep up with what's going on feel free to email or call us, however, as we said before it is difficult for us to respond to every single one.  We have started a blog, mostly as therapy for ourselves - and we don't know how often we'll update it - but you can check in at www.elijahfulton.blogspot.com 

Please know you are all in our prayers and we are so grateful for your prayers, concerns, friendship and witness,

God Bless you all,
Nate and Tricia Stevens