Let’s Catch Up

I’ve been planning this post for a while now, but just found the time to sit down and unload a bit. Since the last time we posted, our lives have changed quite a bit. We found out in early April that our son has Angelman’s Syndrome, a neuro-genetic disorder that involves developmental and speech delays, an unusually happy demeanor, and other possible issues.  It’s taken quite some time to wrap my head around this diagnosis and what it means for our sweet boy and our family, along with acknowledging that our dreams and plans for the future will most likely be significantly altered. It’s been overwhelming and difficult at times for us, to say the least. On top this diagnosis, Eli had the flu in early April, causing great dehydration that required hospitalization and ultimately a surgery placing a G-tube, which ensures that Eli gets the nutrition he needs in order to grow. It’s been a busy, chaotic and stressful time.

We’ve had many friends inquire about what’s next for us or what they can do to help.  Here’s a list (I like lists!) of our current status.

  • We’re following God and believe in His plan for our lives. We completely believe that God’s hand is on us, and we’ve been praying and will continue to pray and trust God, after all He trusted us with Eli. As scary as things have been lately, I’ve found myself praying more and more. I remind myself that worrying is the opposite of faith. Worrying means that I’m failing to believe that God is bigger than the problems I face, when I believe the exact opposite.
  • Eli is our son and we love him unconditionally. His diagnosis changes nothing.
  • We’re leaning on our family and friends. We have amazing people in our lives who have been a part of this journey. We need to continue with life as normally as possible and our family and friends allow us to do that.  We will not be hiding from our lives and the things God has planned.
  • We are not Eli’s diagnosis. Eli is not his diagnosis. We will not limit our son or believe he is incapable of great things. We ask you to do the same. We plan to challenge Eli as any other parents would with their children.
  • We are blessed.  While we’ve had some struggles so far this year, we find great joy in our son.  He is amazing and will continue to be amazing.

What can you do to help?

  • Pray. Pray for Eli’s health. Pray for Eli to be seizure-free (seizures are a common characteristic for Angelman’s). Pray for strength for J and me. Pray for the doctors, caretakers and for our families. Pray for peace in our hearts.
  • If we’re friends already, continue to include us in your lives and the lives of your children.  If we’re not friends, try not be creepy…just saying :)
  • Ask us how we’re doing, but understand we might not feel like talking about it.  We’d appreciate time to just be ourselves.
  • Try not to research things for us.  We have amazing doctors on Eli’s team.  We’re trusting them.  If you can’t help yourself, please only read information from  http://www.angelman.org/ and http://www.mayoclinic.org .  These two sites have the most correct and up-to-date information (as communicated by our doctors).  Understand that Angelman’s Syndrome presents differently in each child and involves a spectrum of abilities and issues, as well.

As usual, God is good.

All of the time.

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Our Story: A Year Later

imageThis time last year, we began our adventure in adoption. After quite a few months of grieving and struggling through our fertility issues, we decided to meet with a great friend, Helen, to just learn a bit from her adoption, but also to gain more knowledge of the adoption process as a whole. I was incredibly intimidated by the whole thing; however, after 3 1/2 hour breakfast followed by 1/2 hour coffee, I felt like I was being nudged along a new path, a very different path than I planned and dreamed of. J and I started praying through the idea that adoption was God’s plan for our lives. The more we prayed and sought advice from family and friends, the more we felt that this was His plan for us. The ironic thing about our journey is that we tried to have a family for 3 1/2 years, constantly praying to become pregnant, but once we changed our prayer for God’s will to happen, things started happening quickly and easily…like really fast!

imageWhich brings us to today… This has quite possibly been the best and quickest year of my life.  Sure, there have been moments of struggle but they are abundantly outweighed by extreme joy. Eli is a super-happy baby and he simply makes our lives better. J and I are constantly reflecting on how amazing it is to experience things with Eli for the first time.  Watching Eli witness the beauty of his first snowfall or watching him delight in the wind makes me marvel at things I’ve taken for granted for quite some time.  It also makes me realize how life flies by. I’m really trying to slow down and revel in each moment I’m blessed with.

imageMy heart is full, friends. God is good. All the time.

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Elihu James Aquila

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Our Boy

So…obviously it’s been awhile since we last posted, since which our lives have drastically changed!  We brought home our son in early March and have filled all of our time to bonding with him.  He is thriving and gaining weight like a champ, much to the relief of his slightly anxious parents.  His pediatrician is happy with his weight gain and developmental progress since he’s come home.  Currently, we fill our days with his feeding schedule, playtime, and of course, sleeping!  He’s adjusted nicely to his schedule, mostly due to the wonderful NICU staff at North Oaks Hospital, where he spend his first 7 weeks of life.  Eli’s been through a lot and is an amazingly strong fighter with a great spirit.  We’ve been so blessed by family and friends, who’ve provided meals, gifts and endless prayers and support.  We are completely in love.  God is so good.

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Eli’s first week home

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Eli today, loving his time swing!

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What My Prayers Sound Like …

image“He’s My Son” : by Mark Schultz

I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a boy that needs Your help
I’ve done all that I can do myself
His mother is tired
I’m sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Sometimes late at night I watch him sleep
I dream of the boy he’d like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He’s so tired and he’s scared
Let him know that You’re there

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he’s not just anyone
He’s my son

Can you hear me? Can You see him?
Please don’t leave him
He’s my son

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Back Home, but without Eli … For Now.

imageFrom J …

So after a few days of being in Louisiana, we have decided to head home, and unfortunately without our son. “How can this be?” … You might be asking us. Well, the bad news is that Eli, although healthy and doing well, is simply not ready to be home with us. Although Eli is gaining weight, and looks rather handsome, his doctors think that he needs to progress more in his ability to self-sooth, develop a more consistent sleep pattern, and feeding abilities.

The crazy part about Eli’s short history on this planet is that he was doing great when he was first born. He was sleeping well, eating well, and quite calm. But some things have changed over the last couple weeks. Unfortunately for Angie and I, it took us going down to Louisiana to receive a more clear picture of Eli’s progress within the NICU. Because we are not his birth parents, we were only given limited information, regarding his stay in the hospital, from the paralegal we are working with. Now, let me be clear, she gave us all the information she had available, and never withheld the good or the bad. We just did not get a full picture until we were introduced to his caregivers, because we were not entitled to his complete care information.

Basically, we visited Louisiana without knowing a true end date on Eli’s release. We left yesterday, obviously upset Eli was not heading home with us. But about half way home, both Angie and I were more at peace with our decision, knowing he was in the best place he needed to be, at this moment. Eli has some more progress to make, and is safely held in God’s loving hands, and in the capable care of his loving nurses. Moving forward, we basically have all access to his care, and are being treated by the staff as his parents … Because that’s exactly what we are, and we could not be more excited to eventually have him home, in our arms.

From Angie …

Anticipation is a funny and interesting concept to me. Often times, my anticipation of events or situations results in increased anxiety and sometimes in disappointments. The anticipation of meeting our son, Elihu James (pronounced Eli-hue), included a lot of angst about my ability to connect or bond with him. I believed that God provided this child for us, and that this was all apart of His plan for our lives, but generally, I am not the most maternal person. I have always felt rather awkward holding babies and engaging in baby talk has never really been natural for me. I was nervous that the nurse would hand me my baby and I would be a mess instead of a mommy, but God intended for Eli to be mine all along and squashed these nervous feelings and wonderings immediately.

As J mentioned, we are now at home in Indiana, and Eli is still in Louisiana. While this was extremely difficult for the both of us to acknowledge, Eli requires further time in the NICU before coming home. We are hoping and praying that, through the amazing nurses’ and doctors’ interventions and treatments that he will be ready to be discharged in the coming weeks.

We are beyond grateful for the nurses who are lovingly treating for our son. One nurse, Rachelle, has loved on Eli from the moment he was born. She is kind and concise in communicating with J and I. She told me that it was easier to let her baby boy go, knowing that he was going home with a good family. Rachel shared that when Eli fusses, she always sings to him. Dawn, Debbie and Janelle all bring in their personal CDs to play for Eli while he sleeps. These nurses told us that Eli prefers a wide selection of music to sooth him to sleep, and will become fussy when the music becomes redundant. Debbie taught me how to properly burp my baby, and giggled when she said, “You’re not gonna break him!” in her sweet southern drawl. Maricia gently explained the ins and outs of the NICU and the life and cultures of New Orleans, her hometown. The social worker, Linda and nurse Janelle, held me as I said goodbye to my son and promised to take good care of him so that I could bring him home soon. I will be forever indebted to these amazing, skillful women and am blessed that they are loving treating my sweet son.

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We Have Finally Met our Son!

imageAfter a week of being at home, awaiting the news from Eli’s doctors on when when he might be released from the hospital, we decided to just head down to Louisiana.  Both Angie and I were very excited to meet our son, and were indecisive on when to leave, to be with him.  A great resource to us has been another adoptive mother, named Jamie, who also is a NICU nurse in Baton Rouge.  She instructed us to come down and begin the bonding process as quickly as possible.  So we left on Monday morning and the trip went very smoothly.

Another reason Jamie thought it would be best to come down was that Eli’s doctors have been delaying his release from the NICU.  The reason for this was due to some regression in Eli’s eating habits and ability to self-sooth.  After his birth, Eli showed great signs of preemie progression, and little sign of withdrawal.  Over the last week, however, he become fussy at feeding times, and is not eating at a pace they nurses are hoping they would.
Basically, we need to take 50 cc’s of formula within a half hour.  What Eli has been doing is  instead of taking quality sucks off the bottle, he is sometimes gumming the bottle instead.  The nurses have expressed that he is wound up and frustrated a bit, which has lead to his fussiness and also a lack of attention to sucking the bottle consistently.
When Eli does not eat the full amount within the time frame allowed, nurses in the NICU have to take note of this and score him.  The scoring system is essential to the NICU’s decision to release Eli and our eventual trip back to Granger.  With that in mind, here comes so positive news …
Eli was receiving some high scores before we got here, so his release was delayed, and his medical treatment was increase.  The meds they NICU has him on is being administered to combat the drugs his birthmother used during he relapse.  The Meconium test we were waiting for came back incomplete, due to a lack of quality test material.  This is not as important as his current treatment going on now.  His meds need to be reduced / weened, however, before we can expect a final release.  To get the weening process started, Eli’s eating and fussiness has to improve.
The good news is that ever since we have been down here, and have had one on one contact with Eli, his demeanor has shown improvement.  He not completely fuss-free, but we can tell that he is much happier when he is being loved on, rather than just fed, bumped and then put back to bed.  By no means do we believe the nurses are not loving on our boy.  We know for a fact that all of the nurses love Eli, and that have been doing all that they can to help correct his unfortunate regression.  You should see these people work!
I’m now gonna quickly brag about my wife.  She’s a natural!  As soon as we enteredthe NICU, and became a mom right in front of my eyes.  They let Angie feed Eli on our second visit yesterday, during lunchtime.  She bumped him, rocked him and chatted with him for easily thirty minutes.  Wile Eli did not eat as well as we wanted, and a nurse had to finish his feeding, Angie did sooth him to sleep after his feeding.  It was amazing how well he responded to our first constant with him.  Seeing her with Eli made me fall even more in love with her!  It changed me, and our relationship, for sure.
Eli did have issues sleeping later that afternoon, and was pretty tuckered out when we visited him later that afternoon.  I got to hold him a bit, but did not feed him during that visit. Both the nurses and I thought it would be best to get his feeding issues moving in the right direction before we try feeing him again.  There may be some cramping going on for Eli, so if you feel led, please consider praying about this and his improvement.  Other than that though, Eli’s very healthy and gaining weight.  Once the regression turn to a progression again, weening him off his meds can happen, and eventually we can head back.
Thanks for coming along with us on this journey.  Your prayers are appreciated and are evident in our lives.  There will be more to come … I promise.
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While I’m waiting…

Since J has been mostly communicating the happenings of our adoption story, I wanted to share my perspective a little bit.  This process has been a long time coming for us, and now there’s a little light at the end of the tunnel.  Everything seems to be just outside of our reach as we wait to bring home our little Eli.

This entire week, I’ve been singing in my head or listening to While I’m Waiting by Jon Waller.  Yes, it appears in that cheesy Christian movie, Fireproof, but it’s a great song that really resonates with my current situation.  I highly recommend making it the soundtrack for any times where you’re struggling with patience or waiting for God’s plans to unfold in your life.  To be completely open-and-honest, I sang it aggressively yesterday as my patience has really been tested with this process…it probably was an ineffective way to deal with my situation, but alas.

This week was extremely bittersweet for me.  It was my last week as a teacher at the Early Learning Center at Granger Community Church.  The ELC is an amazing place where little ones can learn and grow, both in faith and academics.  Prior to teaching at the ELC, I taught for six years as a special education teacher at Oak Manor Sixth Grade Center in the Niles Community Schools District.  I love teaching.  There’s something about watching a child learn something that makes my heart beat fast.  Specifically at the ELC, I gained a new perspective for teaching children about Jesus.  This huge responsibility made an impact on my own walk with Christ, and for that I’m truly grateful.  Listening to children pray and retell bible stories has been humbling and transforming.  While I’m sad about leaving my teaching responsibilities and terrific co-workers, I am beyond excited to be a stay-at-home mom.  It feels like I’ve waited for this for a very long time, and I’m totally ready to embrace mommy-hood.

As I finish up this reflection, I have to smile at how perfect God’s timing really is.  We literally just finished our home study.  Our social worker, Fran, is completing her side of the paperwork tonight and will have it ready for us to pick up at her home tomorrow…just in time for our trip to Baton Rouge on Monday.  (Someone please cue Garth Brooks’ Callin’ Baton Rouge!)

This all seems so surreal and super-fast.  I cannot effectively communicate the peace both J and I feel.  That’s how we know that this is God’s doing.  Everything is simply falling into place.  Please continue to pray for us.  Pray for Eli’s continued health gains.  Pray for the doctors, lawyers and staff, and social workers.  We also ask you to pray for Eli’s birth mother, Daune.  We pray for her to be at peace, to know God’s love, and to walk each step of her recovery path.  Even though it is unlikely that I will ever meet her or hold her hand to thank her for this unbelievable gift in my life, I hope she knows that she will always carry a special place in my heart.

Our hearts are full, friends.  God is always good.

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