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I would like to tell all of you about my amazing little girl, D'Lon Grace - NICU Warrior. On June 14, 2005, my husband and I met the bravest soul and encountered the greatest love of our lives. Born 17 weeks premature at 23w1d gestation weighing 1lb 5oz. 12 1/4in long, D'Lon Grace came into this world fighting for her life. She spent the first 6 weeks of her life on the conventional ventilator and on July 26, 2005, she extubated straight to nasal cannula/vapotherm (its now called high flow cannula), that day was extra special as it was me and Dwayne's 15th wedding anniversary and what an awesome present to walk in and see our beautiful girls’ entire face. Not only that, she treated us to the sound of her beautiful voice. We decided right then and there we did not need another present in the world, EVER! A month after her successful extubation, Hurricane Katrina hit. My husband and I actually evacuated to the hospital that D'Lon was in as there was no way we were leaving our baby. Thank God we didn’t leave her, because as a result of the storm, 4 days later D'Lon along with 12 other preemies were evacuated to another hospital 3 hours away from home. The babies were evacuated by the National Guard (helicopter), and the National Guard (motorcade) escorted us out of the city because unfortunately it was not safe for us to venture through the city without them. D'Lon was out of our sight for about 6 hours, the total time it took for us to get to her. When we arrived at the new hospital she was doing great, and she had already acquired the name "Princess". Reason being, a national guardsman named Mathew gave me hug before he loaded my baby into the helicopter. He promised me that he would not leave my daughter's side until she was comfortable in her new digs. Well by the time we got there, Matthew was gone, but we were told he accompanied her to every procedure, x-ray, weigh-in, just everything. Once she was settled he sat by her incubator and told her about Hurricane Katrina and everything that was going on around her. He sat by my little girl's side for 4 hours and left when she was asleep. Matthew if you happen across her story ever, a million thank yous to you!!!! You will never know what your kindness meant to me!
D'Lon spent another 6 weeks in her new hospital before being discharged and on October 12, 2005, we brought our baby home. All 4lbs 8ozs 15in of her. She was on 1/4 ltr O2, apnea monitor, and about 5 different meds. Slowly but surely we were able to wean her from all but 2 of her meds and she remained on the O2 until she was 2. We not only watched her meet all the milestones we were told she may never meet, but we watched her smash through them as if they were never meant to be an issue at all. She knew her ABC's by sight and she could sound them as well! She counted to 20 unassisted and 10 unassisted in Spanish. She knew all of her shapes including trapezoid and she could recognize them in everyday objects. She knew her colors, all of them! She crawled, walked, run, climbed and loved to dance. She did it all. Please know that the doctors do not know it all. It is their job to give you the worst-case scenario, but it makes it that much sweeter when our little babies prove the scary white coats wrong! When I was told all the things my child may never do, I made every opportunity a learning opportunity and she was thirsty for knowledge. I was a stay at home mom and my job was to water my seed and please believe I got out 10 fold what I put in. However, I now realize, the teacher was actually the student the entire time.
Although D'Lon was all there developmentally, cognitively, and neurologically her bad lungs remained our biggest problem 3 years later. A cold was never just a cold in our house. Even after coming off the O2 24/7, she still required it whenever she had fever be it from a cold or an ear infection. Her lungs were getting stronger but we needed more time. In December 2007, at 2 1/2 years old D'Lon contracted RSV (first season without synagis) and landed herself a 14-day PICU stay complete with 7-day intubation and everything. During that stay it was discovered that she had Pulmonary Hypertension. Probably always had it but the RSV sent her pressures to levels of concern. We discharged from the hospital on the medicine to treat PH, as there is no actual cure. All was well for about 9 months. She had a lot more energy, we were able to play outside for longer periods of time, she was down to only 1 nap per day, her voice was getting stronger, the sildenafil (viagra) made all the difference in the world. Unfortunately in September 08 she took ill. Just a cough and a little fever so of course we went into preventative mode. Round the clock breathing treatments, Motrin Tylenol combo to keep fever at bay, and trip to peds to make sure everything was okay. Her white count came back a little high, got a shot of antibiotics and we came home on oral antibiotics for 7 days. Unfortunately, the illness traveled to her lungs, which turned, into pneumonia, which sent her pulmonary pressures dangerously high. We were admitted into childrens, intubated with very high vent settings, but unfortunately her heart and body grew tired after 6 days and on September 26, 2008, The Beautiful D'Lon Grace Toney, NICU Warrior, grew her wings. She lived 3 years, 3 months, 26 days, 21 hours, and 47 minutes.
I miss her every second of every day!
If you were able to get through this entire entry, bless you!! I share this with you not to scare you, but to give you hope. I have always used our daughter’s life and her NICU/Post NICU experience as one of inspiration. To give hope when the doctors give you none. I used her as the light. I worried after she passed how in the world would I continue to do this when the end result is she has died. How do I still inspire when she ultimately she is another 23weeker statistic who died within the first 5 years of her life. It took a little while, but I soon realized she is still very much the success story. She defied many, many odds in her 3 years of life and parents need to hear that in spite of or contrary to what doctors say, these little one pound miracles brains can develop normally and these kids can be above average. It may take some time but they can catch up and surpass in many areas! As for her death, well, if teaches preemie parents to remain diligent because we know too much to live with blinders on, and all other parents to appreciate their children more because having a healthy child is a blessing, not a right, then I feel blessed because even in death she is still giving lessons. If it can make people love hard today because really nothing or no one is promised tomorrow, then I will further know her life served its purpose. Life is very fragile and the control over it is not ours so love hard today! The one thing my husband and I have perfect peace in is our daughter left this life knowing nothing but love. She was made out of it, born into it and wrapped in it every single day of her life. We wanted her before she was conceived, loved her before she was born, and the minute we layed eyes on her we knew we would have given our life for hers.
I wandered in from the stillbirth board to check on my friends in here and I read your story. Your daughter sounds like such an amazing little girl and you are an amazing mom. Your daughter's story is inspiring. I am sorry for your loss and hope you find solace in her memory.
I read your story and cried. I know how hard it is to lose a baby. I had identical twin girls born in Oct 2007 at 28 weeks. Madison was born with a Diaphragmatic Hernia. She made it through several surgeries but developed pneumonia and her one lung collapsed. She went into respitory failure and died at 5 months and 2 days old. McKenzie is a very healthy 20 month old. HUGS! I am so sorry for your loss. No parent should lose their child.
I read D'Lon Grace's story on another website a few days ago, I was reading preemie stories to find courage in case my Norah comes earlier than her brothers(35 wk and 32 wks). She was a fighter, to be so tiny and make it out of there. I know you are so very proud of her. I knew of preemie complications before my son's were early but I didn't know that Pulmonary Hypertension could be later diagnosed. I want to give you hugs. Your daughter's story really has touched me.
Thank you ladies so very much. I didnt realize i posted her story to this board as well or would have come back sooner than this to thank you. I really appreciate all of you taking the time to read the story of our little warrior. I also appreicate all of your kind words as I try to walk this new journey. Thank you Daisy616 for sharing your story. I am so very sorry for your loss as well. Nothing in life prepares you for this type of journey. I wish each of you peace and blessings. Thanks again for all of your kind words.