Scars

A couple weeks ago I posted a devotion that a fellow TEF/EA mom had written about the scars on her daughter's body. I have always told Evan that his scars are a special part of him.  Without those scars, he would not be with us today. I love the way the mom said it in the devotion.  Her daughter's scars  are reminders that God was able to help the doctors heal her. The scars are proof that she is loved. I truly believe that as well.  God was with Dr. Teich, the man who saved my baby's life the day he was born and 13 days after when he repaired his esophagus.  God was with Dr. Cotton, the man who was able to reconstruct Evan's airway when he was 18 months old so that he could breathe through his nose and mouth like everyone else. God was with Dr. Popp, the man who was able to remove his extra thumb when he was just a year old. Whether or not the physicians themselves believe in God, I know that God has given them the gift of healing.

I asked Evan if he would mind if I took photos of his scars.  He thought about for a minute and said that I could.  I just wanted to document the proof that he is loved.

My perfect boy

 The trach and reconstruction scar

 The scar down the middle was made the day he was born-part of the surgery needed to put in a feeding tube.  The little one to the right is where the tube was for 3 1/2 years

 Tiny little scars from all the IVs he's had over the years

The area where Dr. Cotton took cartilage from his ribcage to help create an airway for him

 His thoracotomy scar, right at the shoulder blade. It runs horizontal from front to back. This was made at 13 days old when they repaired his esophagus.  The puckered scar is from a chest tube

Left leg-broviac/PICC line scar

Right leg-PICC/broviac 

Right hand where his extra thumb was removed



Here's what I hate

I hate having to wait for the results of a mammogram for 2 reasons.  One, because Mom had breast cancer.  Two, because I've had to go back on two different occasions in the recent past to get additional films done.  I hate getting the letter from OSU telling me I need to make another appointment.  Scares the crap out of me.  So, today was my yearly mammogram.  Now I wait.

Oh, I also hate people that drive across a parking lot rather than go up the designated aisle like the rest of us.  I feel like I have to always to be on the lookout for the asshats that speed through the lot because they don't give a shit and don't bother to look and see if they are going to hit anyone.

A Special Gift

I got this book the year that Evan was born.  Read it over and over again those first couple years and ever since then, it has been been on my nightstand.  I thought of a couple moms at the hospital that might like this as we've had some conversations about faith and prayer.  As I took it from the nightstand, I noticed that I had turned down the corners of quite a few pages. One devotion in particular brought me to tears.  Well, most of them did, but this one stood out because it is very relevant to what I've been struggling with lately.

Scars As Reminders

Quiana is ten years old now.  She has begun asking her mother about the scars that cross her body, both on her chest and on her back. The scars are deep and long. They are not beautiful. They have been there since the day of her birth. 

Quiana had been born with a rare and not fully understood condition where the bottom of her esophagus was attached to her trachea, a "mix-up" in the tubing.  As a result food would go to Quiana's lungs.  This condition (known as TEF/EA) occurs in only 1 in 5,000 births.  In an attempt to save her life, Quiana had her first surgery within twelve hours of birth. She has had four more surgeries since then.  There is a possibility that she will have more during her lifetime.

The scars were incurred during surgeries that saved her life.  Some are the result of the feeding tubes and drainage tubes she had to have for a time.  Quiana's mother tells her daughter that the scars do not make her different from other children, but they are reminders that God was able to help the doctors heal her.  The scars are proof that she is loved.

Jesus bears scars too.  His scars are the result of His death on the cross for us.  The scars mark His feet and His side and His hands.  They were put there by the nails that held Him to the cross.  They were placed by the spear that pierced His side.  They are constant reminders of His great love for us.

There is a significant difference between the scars on Quiana and those on the hands and feet of our Lord: Quiana's scars are the result of doctors saving her life; Jesus' scars are the result of Him saving ours.

Picture the palm of His hands.  Those wounds into which Thomas was invited to place his hands are still there.  Look closely and see the that the scars are not in the shape of the nails.  They are in the form of letters.  They are the letters of your name.  They are the letters of your child's name.  The Lord has inscribed your names permanently on His hands.  He has carved them deeply into His heart, and He will never, ever forget you.

Prayer:  Lord, You have inscribed me into the palm of Your hand.  You hold my child and me in those capable and scarred hands.  Help me to rest in that security today.  Help me to see the scars on my child and on my heart as reminders of Your deep concern and love.

Copyright 2000 Carrie T. Gruman-Trinkner

Evan has 8 more days of 4th grade.  Then he will be in 5th. Then we will be gone from the safety of Colerain Elementary and into the scary world of middle school. Right now Evan is surrounded by friends and classmates who love him and accept him just the way he is, scars and all. I'm just not so sure that the kids in middle school will be so accepting and it scares me to death. Evan is so confident right now and my fear is that he'll lose that if there is any bullying.  That would probably kill me.  I have to remember that He holds Evan in those capable and scarred hands.

Our little getaway

Evan's spring break was the week before Easter and we decided to just go away for a couple nights. Not too far, not too expensive. Evan read a book about Mammoth Cave recently so we decided to go there.  When looking for hotels, I came across Wigwam Village #2 in Cave City KY.  Built in 1937, it is only one of three Wigwam Villages left in the country.  So, how could I pass that up?  Well, let's just say that when we first got there, I was ready to turn around and go back to the interstate and get a room at the Comfort Inn!  Let's just say they haven't done much to the wigwams since 1937!  I didn't want to disappoint Evan because he was super excited (I didn't tell him where we were staying until we drove up).  So, I sucked it up and made the wigwam our home for the next two nights! It was clean-that much I can say! Anyhow, we had a great time.  We realized it had been awhile since just the 3 of us had gone anywhere.  Yes, we travel alot but recently it has been with other people or just 2 of the 3 of us.  Mammoth Cave is fascinating.  We took a two hour tour into the cave.  All I could think about was, what if there was an earthquake when we were down there? Yes, that's where my mind went.  We only explored 2 miles of the cave and it's like 397 miles long which is incredible. We had to duck down in places and walk sideways thru Fat Man's Misery because the passage was so narrow. Very, very interesting.  What I loved about Cave City KY is all the cheesy touristy things and gift shops! I will write more at a later date as Evan is in the midst of a sleep crisis.........

My dad's work

Dad's published articles

My cousin Sue sent me this link the other day.  I thought it was something I should hold on to for Evan to see one day. 

Email from Dad

I was going through my old hotmail account, knowing that I had some emails that I wanted to retrieve before closing it out for good.  I came across this one written by my dad on Aug. 8th, 2002. And yes, it made me cry.


Dear Friends, I'm happy to report Evan's surgery went very well on Monday. The team was able to: 1.Enlarge his airway 2.Free vocal cords from wall of airway by removing cartilage from behind same 3.Remove cartilage from rib, shape it to fit in his airway both front andback and suture them in place and 4. Place a stent in affected area to keep airway open during healing process. In a month, they will check the throat and if all is well, remove the stent,cap the Trach tube and let him breathe for a time, then he will have to stay in the hospital for 24hrs when they remove the tube.(Decannulate is the term all the Moms know). We had thought all this would require 1-2 operations, but were able to do it at one time. The docs did tell them that they would know better once they started surgery what could be done. A small drain was placed in the throat area and the rib. Yesterday the rib drain was removed and this AM, the throat drain. He was able to start eating (drinking actually) from his bottle and pain is being managed with just Tylenol. Yesterday when we visited him, he had a smile for us and knew he'd turned the corner.The surgery required was approximately 5 1/2 hrs and he was in ICU ,until last night, not because he had to be there, but because, there were no beds available in the step down unit. We felt good about his being in the ICU though, more for Mom and Dad and us. We came home yesterday afternoon,talked with Mike this AM and they may be coming home tomorrow, if all continues as it has the last 24 hr. Evan's nurse drove 140 miles one way to visit him yesterday .She is one of the ladies in his life-Mom, Grandma and Patty.She's been wonderful with him and for him. She comes to the house 20 hrs a week so Annie can sleep, shop or just take a break. As I think I told you, Dr. Robin Cotton perfected this procedure. The respiratory therapist was in to check his gases etc. and he said he was on Dr Cotton's transport team and flew all over the world to bring children to Cincinnati for treatment. Evan weighs a little over 20 lbs and all this was done through the side of his throat and after the drain was removed today, the incision was covered with a BAND AID, as was his rib incision.It must be all microscopic assisted surgery in that area.As a side, yesterday he coughed and phlegm came out his mouth. This may seem mundane, but it is the first ever and when he saw the doctor coming to see him this morning, he started to cry and a little sound came from him! "A thousand mile journey starts with the first step".  Rosemary and I have been, and are grateful for your prayers/concerns and thoughts for him , his Mom and Dad and us.She saw her oncologist last Friday and all systems are go! A lifelong friend of Rosemary-Barb Seeger- will be undergoing surgery for breast cancer on August 15th so we ask you to join us in healing prayers/thoughts for her and her family during this time. Well, I didn't mean to write an essay or short story, but did want to fillin the "Friends of Rosemary" group. Take care, Jim and Rosemary

There's no place like home

10 years ago we brought our baby home, 49 days after he was born.  We were scared and he was unhappy to be out of the NICU, the only home he had known. I cried, he cried. I was not ready to have him home.  It's funny because from day 1, all I wondered was when he'd be able to come home and now that he was, I wasn't sure I could handle it.  Did that make me a terrible mother? I thought for sure it did. Things were too hard.  Keeping track of all his meds, following the "recipe" for his formula-we had to get the caloric content just right-making sure he was being fed 18 hrs a day courtesy of the feeding pump, suctioning the trach, cleaning his trach site twice a day, cleaning his g-tube site once a day, giving him breathing treatments, making sure we have the apnea monitor on, making sure the air compressor is working so that he's getting cool mist into his trach.  I didn't want to be a nurse.  I just wanted to be his mommy.  

But here we are 10 years later.  I am the proud mommy of a smart, funny, healthy, sweet, loving, boy who, in celebration of his homecoming, ate spicy wings!  He's come a long way since being hooked up to that feeding pump for his first dinner at home!