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Our Autism Story Began in the Kidneys

On July 30, 2006 at 5:18am, my joy arrived in the morning.  A beautiful, healthy baby boy. His eyes were blue like sapphires.  They say all babies have blue eyes, but his were BLUE.  As I carefully unfolded his blanket and counted the toes and fingers, I gasped.  He had 10 perfect, long skinny fingers and 10 long skinny toes. I told him then, “Baby, you have the fingers of a musician. And oh those toes.  Grammy will call those worm toes.  Just like mama.”

IMG_1873Gunnar arrived at the hospital later that morning.  Just 28 months, 6 days older.   He squealed with joy to meet his baby brother.  To this day, I think when he met Konrad, he thought we got him a present.  He kept saying “Baby, baby for me!  You get me baby!”

We brought my baby Konrad home and my heart was full.  I had beaten the odds.  After the miscarriages.  The uncertain months of pregnancy, drugs to stop labor, bedrest. Pre-eclampsia.  The tremendous swelling.  Damage to my kidneys. It was all worth it. I had successfully carried and delivered two healthy baby boys.  I was full of joy and gratitude.

Then came September 17, 2006.  Something was wrong.  My normally easy peasy baby was suddenly crabby.  No matter how much I rocked him and sang to him, he seemed unable to get comfortable.  My baby who always smiled, couldn’t stop fussing.  I took his temperature and it was 101.8…they say anything over 100.4 in a baby is cause for concern.  I told myself he had an ear infection.  I headed to Zeeland Hospital Urgent care to get him some antibiotics.  There was a Notre Dame game that day…so instead of bothering Mr. Businessman with my concerns, I took Gunnar to the hospital with me.

We arrived at the hospital at some point late that afternoon or early evening.  I honestly don’t remember anymore.  The doctor immediately checked Konrad’s ears. I waited expecting to get an ear infection diagnosis, a prescription, and be on my way home.  I was an experienced mom now.  I knew the drill.  But…nothing was wrong with his ears.

Okay, I told myself, no biggie.  Mr. Doctor wanted to do a chest X-Ray.  Of course! Gunnar had pneumonia at 3 months.  I bet Konrad will be the same. A little scary, yes. But, not my first day as a mom.  They will do the chest x-ray and give us meds.  We will be home before we know it. I told little Gunnar that they just had to do some tests on baby to make sure they knew the right medicine to give him.  Don’t worry about your baby Gunnar, the doctors will fix this all soon.  But his chest x-ray was clear.

At this point, Mr. Doctor gets very serious.  Too serious.

We need to find someone to watch Gunnar because they need to do more invasive tests on Konrad.  It wouldn’t be appropriate for Gunnar to be in the room.  Oh…okay.   Well certainly whatever Mr. Doctor thinks.  I call home to Mr. Businessman.  He doesn’t answer because there is a Notre Dame game on that day.  He doesn’t like it when we interrupt his games.

I have no one else I think I should bother with just an infection…my mom.  Oh no, she has just had treatment for varicose veins.  Her legs are wrapped and she’s not supposed to drive.  I call Mr. Businessman again.  No answer.  I don’t know what to do.  I call my mom.  She comes immediately.  She takes little Gunnar into the waiting area just outside the emergency treatment room where I stand over my Konrad.

Mr. Doctor explains that something “out of the ordinary” is causing Konrad’s fever.  They will need to do a spinal tap.  I feel my word come apart piece by piece. My world has become pixelated. Mr. Doctor asks if I want to stay with Konrad while they do the procedure.  I think of punching Mr. Doctor.  How could I possibly leave my baby right now?  I am not sure how I’m going to get through this, but I will not leave him.  I summon all the inner strength I can find…I swear I am pulling strength from the tips of my toes and the roots of my hair.  But I am NOT leaving my baby.

Mr. Doctor asks about the father’s consent.  But Mr. Businessman is still not answering the phone.  Mr. Doctor doesn’t understand it is a Notre Dame game day.  Mr. Doctor insists that we need to get dad to the hospital.

I am dressed in a surgical mask, hair net and gown. I help the nurses hold down my little Konrad.  My mother stands outside the doors with Gunnar in one hand and a cell phone in the other.  I begin yelling through the door the phone numbers of my neighbors.  I don’t even know what numbers they are at this point.  I’m shouting numbers through the emergency room door that come to my head.  I’m shouting numbers, while I’m holding my 7 week baby down on an emergency room bed.  While Mr. Doctor performs a spinal tap on my little Konrad.

The spinal tap is clear.  My baby.  My heart.  My little Konrad is diagnosed “failure to thrive.”  They started the first IV of general antibiotics.

IMG_1870

One of the phone numbers I yelled through the emergency room door turned out to be my next door neighbor.  Sarah.  I didn’t know her well.  She gave Mr. Businessman haircuts.  We shared a beach across our backyards.  She was nice and beautiful and outgoing.  I’ll never know why her number was one that came to my brain as I was holding down my baby that night.

She was and is a die-hard Notre Dame fan.  If my brain had been fully functional, I would never have given her number.  Mr. Businessman had taught me it is not appropriate to bother Notre Dame fans on game day.

Yet Sarah took my mother’s call that day during the Notre Dame game.  As I she tells it, she burst into our home.  Looked Mr. Businessman square in the face.  She kept eye contact as she stomped to his TV and turned it off.  She pointed her finger and said, “Get. Your. Ass. To. The. Hospital.”  Mr. Businessman would later tell me how rude she had been.  I nodded in agreement at her brash and inappropriate behavior. I was secretly cheering.

Back at the hospital Mr. Doctor explained that they needed to do a blood test and take a urine sample.  I was numb, but I agreed.  A proper urine sample can’t be done on an uncircumcised boy without doing a penile insertion.  Mr. Doctor asked why Konrad wasn’t circumcised.  I told him Mr. Businessman did not think it was necessary.  Mr. Doctor said that in 99.9% of cases, that is true.  I thought how comforting it was to be a statistical outlier.  Mr. Doctor explained that any numbing medication could taint the accuracy of the test.  So I held my baby again that night for another painful procedure.

Mr. Doctor told me Konrad needed to relax or the procedure wouldn’t work.  It was a horribly painful procedure done without any numbing medication.  He was 7 weeks old. Konrad was screaming.  My world again became fuzzy and pixelated.  I held his hands and I tried to sing.  I tried to sing but I couldn’t remember the words to any songs.  At the end of the world, there is no music left to be sung.  I tried to sing the very first song I ever remember learning ~ Jesus Loves Me.  I am still not sure if I got the words or the melody right.  But that night, with Mr. Doctor and my baby Konrad, I sang as my world came apart.

His urine sample came back with infection.  I’ll be honest.  I rejoiced.  Finally, I thought.  No more tests.  They knew what was wrong!  We can get medicine and go home.

I was wrong.  So wrong.  By the end of that night, he had so many IV’s I didn’t know how to hold him.  They finally had to put one in his head.  That IV would permanently kill the pigment in his hair and create a white spot in his hair for life.  They had to do so many more tests.  Kidney ultrasounds.  Finally we knew.  The problem was between his kidneys and his bladder.  My 7 week old precious Konrad had permanent kidney damage.

Mr. Businessman finally came for 15 minutes and left.

That night pediatric nurses came and helped me hold my baby. There were so many tubes, I didn’t even know how to pick him up.  They expertly and gingerly handed him to me as I sat in the rocking chair in his hospital room.  That night, I rocked my baby to the rhythm of medical beeps and through my tears, I sang “Held”.  I promised him no matter what happened, I would never leave him.  He would be held.

11 thoughts on “Our Autism Story Began in the Kidneys”

    1. So glad you came hobbling in with your legs still in wraps. I don’t know who else I would have called in that moment! Certainly no one was better suited to handle Gunnar in that moment.

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    1. That’s my hope. So many moms have reached out to me as they begin their journey. I can just hope that this helps someone. Every journey is so different. I can never be an autism expert – but I can do my best to be a Konrad expert.

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    2. Yes, God was most certainly there. There is a Christian song…I think it’s called “I’m Still Here”. The lyrics are something like “You have not been abandoned though you can’t see through your tears, I’m still here.” I remember running that through my head many times in many hospital rooms with Konrad.

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  1. Tracy, I cried through this. I can only imagine how you felt through all of that but I’m pretty confident that Konrad felt safe and loved despite his physical pain. You’re a good mama.

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    1. I did my best…so much tearful prayer. I’ve never begged at the throne the way I’ve begged for my children. And one day I also finally prayed for myself. I prayed for God to help me see the plan in all of it, to give me peace and joy. It took a lot of prodding on HIS part, but I am finally there. I write out of the past in hopes it might help someone or inspire or encourage in some way. I’m not bitter at all. I’m honestly so thankful for where I am and the life I have with Brent and my kiddos. God has been so amazingly good to me!

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  2. Thanks so much for this heartfelt and honest post. It really resonated with me, as I recently spent a week at DeVos Children’s Hospital with my little guy. Long days and nights of trying to sleep in his bed without disturbing all of the tubes/wires, holding him down during painful blood draws amid cries of ‘Don’t hurt me Mama!’, asking endless questions and trying to absorb all of the medical terminology being thrown at me… Yes. I totally get it. And I look forward to reading the next part of your story. ❤

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    1. Oh my heart breaks just reading this. And I so relate…I would frantically google everything the doctor’s said just to try and understand what they were saying! Desperately trying to educate myself so that I could advocate for him. I hope your kiddo gets on the mend soon. You are in my prayers!

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