Christmas in STL

Macie was admitted to the hospital today. You can log onto her caringbridge site for updates www.caringbridge.org/visit/maciefayschnepper

Bacterial Pneumonia

Macie continued with a fever over the weekend. She spent just about all day yesterday in our arms with no energy. When her temp would get over 100 she would break out in a rash. We took her in to our local pediatrician who looked her over and then sent us over to the hospital for a chest x-ray ........... the results Bacterial Pneumonia. After Macie's doctor here talked with the transplant team in STL they all decided she can stay at home on an antibiotic. We are blessed to have such a great team caring for Macie.

Macie started feeling better late afternoon. She ate well and spent the rest of the evening dancing, playing with ELMO, and tossing snow balls (socks) at me. It was so good to see her smile and play!

Macie will need to stay in over the holiday. So we will be missing all the family get togethers. I would LOVE to have her all dressed-up in her Christmas outfit complete with matching bracelet celebrating. But, we will stay home and read the Christmas Story and The Night Before Christmas in our PJ's. We are just thankful to be able spend Christmas together, at home.

Merry Christmas

Merry Christmas

It's day 13 of Macie running a temp. She is doing well, eating and drinking, resting in my arms. We have been talking to her pediatrician here and the transplant doctors in SLT over the past week in a half. She had labs taken last week, there all back and look as if she just has a virus she having trouble kicking. Yesterday she went about 14 hours without a temp then spiked one in the afternoon breaking out in a rash. Overnight she spiked again. Today we thought she had kicked it and then spiked again. Hopefully she is on the tail end of this virus. If she continues with a temp over the weekend STL wants to see her on Tuesday. Please send up an extra prayer for Macie, please pray this virus passes.

Macie's babies have all been sick too. We have to give them medicine and take their temps. And Oh My, the diapers the babies have been having. Good thing for mom and dad Macie is potty trained! Our girly, girl.


Macie and I had 3 snow days this week. Daddy is a little jealous. Macie keeps asking to go to school and for her "Heder" (Heather) and "Alex", her sitter. So now were off until after Christmas. She has been filling her days up with books, puzzles, Elmo and getting her nails done.

Our beauty queen continues to have a love of fashion. The trouble is the looks are her own creation. She LOVES orange, zippers, pockets and jeans? She will wake-up in the middle of the night, usually around 4am asking for a specific fashion piece (heart sweater, orange shirt, etc). This has been happening twice a week for some time now.

We hope everyone has a wonderful Christmas.

Happy Thanksgiving

Cracking-Up With Grandma
John Deere Time With Grandpa

Christmas ELF

Six of the eleven great-grandkids

We had a great Thanksgiving weekend. We spent Thanksgiving day with Macie's Grandma Vaughn (Mike's mom) side of the family.

We hung Christmas lights.

On Sunday Grandma and Grandpa Hawkins (my parents) brought pizza and hung out.

Little Blue Diamonds

Macie and I were moving some books around this weekend and found this poem. I have been looking for this poem since Macie came home after transplant. I must have tucked it away in one of her books.

Little blue diamonds, Heaven sent to me,

Fairest as can be and so wonderful to see,

Though they are only little Macie's eyes,

They are beacons on this road to paradise,

God gave me Heaven's greatest treasure,

When He gave me this pleasure of,

Little blue diamonds of mine.

~Lullaby sang to Donna Avers by her mom long ago

When Macie went into Cardiac Arrest for the second time she was impatient on the floor. She was immediately sent to the PICU. She needed labs ran stat. No one could get access. After getting poked many times, I lost it and told them to get someone else in there, NOW! God sent us Donna Avers. Donna sang this song to Macie and got the needed labs. She often checked in on Macie. I would like to run into her during one of Macie's scheduled appointments. Donna was at Children's for the first heart transplant and shared inspirational stories of hope with Mike and I.

2009 Heart Walk

Michelle Schnepper and her daughter, Macie, at Sarah Bush Lincoln Health Center on Wednesday, Nov. 19, 2008. (Journal Gazette/ Times-Courier, Kevin Kilhoffer)

Macie Schnepper was 3 months old when she went into cardiac arrest. Denny Throneburg was 54 years old when he had quadruple bypass. Throneburg and Michelle Schnepper, Macie’s mother, were featured speakers Wednesday morning at the kickoff breakfast for the 2009 Start! Coles County Heartwalk.The annual Heartwalk to raise funds for heart disease awareness and research will be held Feb. 1 at Cross County Mall.

Team captains and volunteers met Wednesday at Sarah Bush Lincoln Health Center to launch their efforts. Amanda Buckler, corporate events director for the American Heart Association’s Midwest affiliate, said one in three people will be affected by heart disease. “Almost everyone you talk to has a story,” she said. “They know either a family member or a friend, but they’ve been affected in some way.”

Throneburg, Lake Land College’s athletic director and softball coach, certainly didn’t think he would have heart disease. He had been an athlete in high school and college, coached sports for many years, does not smoke, isn’t overweight and works out.“There was no indication that I had a heart problem,” he said. “I was a good example of a person who shouldn’t have heart problems.” Thinking he had some acid reflux, Throneburg saw his physician who sent him to the hospital for tests. “He said you’re lucky to be alive,” Throneburg said of the physician. Two of Throneburg’s arteries were completely blocked; two others were 80 percent blocked. “I went from thinking I’m perfectly healthy to quadruple bypass,” Throneburg. He has since participated in and “graduated” from the METS exercise program at Sarah Bush Lincoln, adopted a more healthy diet and has “learned to appreciate things more.” “The motto of my story is: Get yourself checked out,” he said.

Macie Schnepper was born 2 months premature with an inflammation of the heart in May 2006, according to her mom, Michelle. Macie seemed healthy but at 8 weeks had some difficulty breathing. At 3 months, she went into cardiac arrest. “Our only option was a heart transplant,” Mrs. Schnepper said. “We were in and out of the hospital for the next month. Thirty-five days later, a heart donor became available.” On Oct. 5, 2006, Macie underwent a heart transplant. “It was very scary,” Mrs. Schnepper said. “My husband (Mike) and I are organ donors but we never thought (transplants) would include a child. While we were thankful for the heart for Macie we grieved for the donor family as well.” The new heart was a perfect match, the mother said. Mrs. Schnepper said an infant’s heart is the size of an almond but Macie’s heart was about three times the normal size. The Schneppers, who live in Dieterich, plan to participate in the Feb. 1 Heartwalk event.

Why a walk to focus attention on heart disease? Beckler said studies have shown that walking has the lowest rate of dropouts from various forms of exercise.“It’s inexpensive and you don’t have to have a partner,” she said. “It’s the easiest and cheapest form of exercise.”Beckler also said research indicates that for every hour of exercise a person gains two hours of life expectancy.Anyone wishing to enter a team or participate in the Heartwalk should call Sara East at SBLHC, 258-2571 or 348-2571.Contact Lair at blair@jg-tc.com or 238-6865.

Poem From A Heart Mommy

Such is life with these little heart-babies.
It means falling asleep watching the digital line dancing up and down on her monitor indicating her heart is beating
It means second guessing every gurgle, hic-up and coo from the back-seat.
It means worrying that every bug or infection could turn into something life-threatening
It means constant acknowledgement that every breath is a gift from the Lord
It means having home, beeper and cell phone numbers for 5 doctors that you are on a first-name-basis with
It means choosing not to go to church, the mall, a party because of exposure to germs
It means thanking God for the privilege of each dirty diaper I get to change
It means standing over her crib praying for another day to love her
It means thanking the Lord each morning when she wakes and smiles that He has given her another day