Grace Lundt

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Grace’s Story

She had a smile that won the hearts of everyone who knew her! She was one of the biggest blessings of my life!

Grace Lundt, Full Trisomy 13 / Dandy-Walker Brain Malformation, 04/10/2007 to 02/25/2012, Little Elm, TX

Grace Noel Lundt was born on April 10, 2007 and is our special gift from God. She was prenatally diagnosed with Trisomy 13, Dandy-Walker brain malformation, and many heart calcifications. Dr.’s gave no hope for life longer than five minutes, but our incredible God had other plans!
Grace truly was a miracle baby from the very beginning! The day she was born, God gave such peace, strength, and joy. Many friends and family came to see our special little girl. It seemed like a celebration as the clock kept ticking and Grace did so well. Two days after birth, having no medical intervention, Grace came home from the hospital. Grace’s eyes were shut and we assumed she was blind. She had a small hole in the top of her head and some very endearing toes. She was absolutely beautiful! Her heart was good! She started out eating well, but soon after we were home she started losing weight. This began our feeding tube process. God brought us through a lot of difficult days with those struggles. Grace received a GJ feeding tube which worked well for her growth. After time we struggled with her tube site draining and her poor skin gets so sore, but we just keep doing our best to keep it well. God brought Grace through aspiration pneumonia from her first NG feeding tube. He also put her in the hospital at the right time when she got mono. Her feeding tube had plugged and we ended up in the ER. They found her counts were all off and into the hospital we went. At seven months an MRI was done of Grace’s eyes and brain. There was no sight possible, but God had completely healed her brain from the Dandy-Walker! What a miracle! Soon after that Grace started having seizures. She had myoclonic jerks. After that her seizures progressed into different forms and we had difficulty finding the right medication. We had time frames where they were somewhat controlled and other times where she had them up to 30 or 40 a day. As for Grace’s eyes, we started the process of getting prosthetic eyes so that her facial growth would remain normal. For the first several months they were just clear plastic shells, but at about 15 months Grace had her first set of painted eyes. We chose a deep blue color like Ethan’s. (Everyone had always commented that Grace looked like Ethan.) The ocularist did a beautiful job! Soon after Grace’s first birthday, she started a new seizure medication, Clonezepam. It increased Grace’s secretions and made her always have a little pool of water in the bottom of her throat. This caused many worries about her respiratory status and whether she would aspirate again. This medicine also relaxed Grace so much that she was so drowsy all the time. In the progression of taking the medication and her seizures finally seeming controlled, we did not realize we were losing our little girl in the process. Grace did not have seizures often, but when she did they were changing into longer seizures. Grace also started having non-stop Urinary Tract infections. We would have her on an antibiotic for one and she would get another one. After a month or two trial time, we took Grace off the Clonezepam and we got our little girl back! Her gurgly throat was no longer a problem! She was smiling and crying again! She got so much stronger, holding her head up at times. It was wonderful. Still struggling with the UTI’s and other discoveries made in trying to figure them out. We had testing done on Grace’s bladder, kidneys, and spine. We found out that her bladder refluxed a little, but unsure how much. Her kidneys were not healthy and needed a lot of prayer. They are enlarged. There is some water in them that does not belong there. The tissue is not good at all. There is supposed to be an obvious difference between the inner part and outer part when you look at them, and Grace’s all looks the same. The Dr. said that she must have some good reserve that she is using otherwise she would not be growing as well as she was. The Dr. said we were headed for kidney failure eventually and her job was to get the UTI’s stopped to keep the healthy part of the kidney healthy. That would prove to be an ongoing battle. We did an MRI of the spine and found that Grace’s L4 was too low. We would soon see a Neurosurgeon to see if there is a possible tethered spine or tumor. Her spine also curves to the right. The Urologist feels these spinal issues could be putting pressure on the kidneys and bladder causing these problems. God was so faithful in His loving care of Grace and our family. Our move to San Antonio was good for Grace’s care. She is getting exceptional therapists and services here. Our doctor also heard a heart murmur that had not been diagnosed. Grace was now two years old when they discovered that she needed a coarctation of the aorta. The procedure went very well and held well! Grace also had a tethered spinal cord release surgery at the age of two. We changed her GJ tube to a G-button with a nissen wrap. Both surgeries went very well and the acidic drainage on Grace’s stomach finally stopped and her stomach healed. At age 3, we moved to Albuquerque, NM. Some people thought we weren’t making a good move because healthcare specialists in NM were not the best. I was told that the only good specialist they had was the Urologist. I just had to smile, because that was the main specialist we still needed. Once again, God had paved the way to provide exactly what Grace needed! Through her numerous UTI’s, pneumonia, RSV, her colon perforated requiring immediate surgery, and many other health complications God was always faithful to get her the help she needed at the perfect time. We were still able to go on trips, visit family, go to church/Sunday School for Grace, participate in field trips with school. She made great progress in her PT, OT, and Speech. She had a smile that won the hearts of everyone who knew her! She was one of the biggest blessings of my life! God chose to take her home to heaven in February of 2012, just two months short of her 5th birthday. We had decided to not treat every UTI unless she had a fever because Grace was becoming so resistant to all the antibiotics. The week before I had suspicions that she had a UTI, but then it seemed to clear up. At this point we were cathing her five times a day to make sure her bladder got drained fully. Then one morning she started spiraling down quickly. She had a fever and her oxygen level was down. We put her on oxygen and rushed her to the hospital. It seemed to be the beginning of another short hospital stay, get her on the antibiotic and get her home!! By midnight, the UTI had gone septic and was attacking her heart. She crashed three times within a couple hours. It became evident that they were not going to be able to fight off this infection. They kept saying that they couldn’t catch up to it. We brought in Grace’s three siblings early that morning to say their goodbyes, and right after they left the room Grace went from my arms straight into the arms of Jesus. I have never known such loss, but through it all my God was faithful!!

  • Diagnosis: Full Trisomy 13 / Dandy-Walker Brain Malformation
  • Location: Little Elm, TX, USA

  • DOB: 04/10/2007

  • DOD: 02/25/2012