My almost two year old daughter calls out “Mama?” as I slip into my bedroom for a few moments of solitude. My heart melts as I hear those words, words I was told would never escape those precious lips. You see, my daughter didn’t come into this world with a furious cry that let my heart know that all was well. My daughter came into this world in complete silence, a silence that grew louder as the doctors worked hard to regain a heartbeat. After nineteen long minutes, God allowed my daughter to return to this world. I believe that Magdalaina Ilene Luibrand was truly born the moment her heart started beating again on March 15th 2010.
From that moment on, we have received many dire predictions for Maggie. We were never offered the one thing that we needed…hope. She was never supposed to make it home. We brought her home after 5 weeks in the NICU at Children’s Hospital in Minneapolis. We were told she would never have any “quality of life”. Maggie is one of the happiest kids I have ever seen, with the greatest giggle you have ever heard. She was never going to be capable of eating, talking, walking and all those activities that we take for granted everyday. She can eat and drink without her feeding tube now. She babbles endlessly now while inserting words like “more”, “hugs”, “luv you”, “good girl” “Mommy”, “Daddy” and “drink”. A lot of physical motor skills seem to be harder for her than most kids...but she is always improving, always trying...and those big blue eyes that know exactly what I'm saying never cease to amaze me! How I love to watch this bright, beautiful, bubbly little girl grow up! A little girl that laughs at her Daddy who makes some of the silliest noises! A little girl that wakes up cuddly and gives her Mama so many kisses that I honestly lose count! A little girl that puts her arms up to help us get her shirt on and then she grins and giggles when we tell what a big helper she is! A little girl that looks for her Daddy and says “Da da?” My heart gets so overwhelmed with happiness and thanksgiving when I see her “quality of life” that our God has given her!
Maggie’s journey has been a tough one. At only five hours old, she started Cold Therapy to help stop further brain damage from occurring. Maggie’s first EEG showed no brain activity, her second EEG at 3 weeks old showed very little brain activity and what activity they did see was incredibly abnormal. Maggie also developed a very rare condition called Subcutaneous Fat Necrosis were 80% of her fat mass died. When this happened, the areas on Maggie’s body that were affected became hard like concrete causing Maggie to be in pain every time she was moved. Subsequently, she developed Hypercalcemia. This condition could cause Maggie’s calcium levels to skyrocket and if they got too high it would cause her heart to stop. We were constantly monitoring her levels as they seemed to always remain just below the danger point. During this time, we were looking into Hyperbaric Oxygen Therapy treatments. We were hearing some amazing stories of how it has helped children and adults with brain injuries. So when Maggie was just nine weeks old we made the long drive to San Bernardino California to start her first round of HBOT treatments. I was amazed at the results! After just one treatment Maggie stopped throwing up at every feeding. After the second treatment, her tremors stopped. After the third treatment, she drank 3.5 oz from a bottle for the first time! She only needed the feeding tube now for supplemental feedings at night. We stayed for 16 treatments. When we got home Maggie continued to show progress in all areas except for the fact that her skull size never changed. We were told that the reason that Maggie’s skull wasn’t growing was due to the fact that her brain wasn’t growing. This can be a problem that occurs after a serious brain injury in young children. We were told that there is no treatment for this problem. So naturally, after having seen the amazing results with HBOT, I called the founder of Rapid Recovery Hyperbarics to find out if she knew of any treatments for this particular problem. We decided that we would once again head for California, this time for 39 treatments, this time in hopes that Maggie’s brain would grow and increase the size of her tiny skull. We are so thankful that after this last round of HBOT Maggie’s skull did grow and she began progressing with new skills. She can walk as long as she is supported now, as her balance is still off. But that has not stopped her from having the strength and stubbornness to walk up a flight of stairs with me behind her! She loves going to preschool and knows her colors, shapes and a lot of animals. And now with her new little sister crawling around she is taking part in normal sibling rivalry. I love to see her desire to follow in her sister’s footsteps as she learns from her. Maggie also has Craniosacral Massage therapy, and Myofascia Release therapy in Grand Forks along with Physical, Occupational, and Speech Therapies at Little Miracles two times a week to help her catch up developmentally. What truly makes even the most difficult experiences with Maggie bearable is faith that God has an intention for her life. He gave her strengths, and I am able to see those now amid and beyond the challenges with which she was born. She has a purpose, and I cling to it knowing that she was intended for greatness and a higher calling. This is what enables me to see her future as bright and beautiful. I can’t wait to see what she will be able to accomplish some day. Maggie’s limitations are not larger than His plan for her life!
Maggie has two “big needs” right now. She is very close to crawling & has learned how to sit up in bed by herself & how to get out of bed when she wants too. We are so proud of her for accomplishing this mile stone but it has proved to be a danger to her as well. The danger lies in the fact that she is unable to stop herself from falling yet. So we need help purchasing a special Sleep Safe twin bed that will help her to safely stay in bed at night so that she is not constantly falling out of bed and injuring herself. Maggie’s other “big need” is a stroller/wheelchair. She doesn’t walk yet on her own and she has grown out of all the regular baby style strollers. Weighing in at 50 pounds makes it hard for me to even walk across the parking lot carrying her. This pushchair will grow with her for many years to come and can provide her with the possibility of independently propelling herself in the future.
Written by Emily Luibrand 2/14/12 (updated 5/12/14)
Thank you to all our church, family and friends for supporting us in the past and to those
we’ve yet to visit with, please feel free to ask us questions and come visit us.
Maggie loves meeting new people and gives some of the best hugs!