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The Beautiful D'Lon Grace Part 2
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yctoney posted:
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. Yolonda The Beautiful D'Lon Grace's Mommy (please feel free to view pictures of my beautiful daughter/family, *pictures of her name as it travels the world, as well as follow my blog as I walk my journey of grief to peace at myspace.com/ytoney ? my page is public so you don?t have to be on myspace to view it.) *Project: D?Lon Grace Travels the World
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bcmom1 responded:
Yolonda, Thank you so much for sharing D'Lon Grace's story. I know I don't need to tell you this, but what a beautiful little girl! She looked very mature and wise for her young years. I am so, so very sorry for your incredible loss. This tribute makes me appreciate even more how much a blessed miracle my daughter is and how every triumph, even the little ones, mean so much to us. I also have lost all guilt I felt for rushing her to the ER twice for nothing and for pushing the doctors for every single possible treatment available. Again thank you and know I am thinking of you as you continue this journey.
 
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PreemieMom3 responded:
Wow, what a story. I am so impressed with your daughter's strength and how well she did at first. That is an amazing success story. I am so sorry for your loss. It sounds like you have found comfort and joy in the life she was able to live, and are grateful for the time you had. I lost my preemie at 21 weeks; he passed away just less than an hour after his birth. It was a sorrowful but beautiful experience to have him with us even for that short time. Thanks for sharing.
 
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Jamelita responded:
Oh my...what a beautiful tribute to your daughter. I have tears in my eyes. You are so right when you say that having a healthy child is a blessing, not a right. It is SO EASY to forget that as the NICU days slowly fade into our memories. Thank you for reminding me to appreciate every moment with my wonderful baby.
 
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simerlm responded:
Thank you so much for sharing your story. I can't even imagine how hard it must have been and still is for you. Thank you for the reminder also that every day we have with our little miracles is a gift from God to be cherished. Thank you!
 
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yctoney responded:
Wow thank you ladies for your wonderful replies. I loved all of them! I really appreciate your reading her story with the intent that it was written. I wont pretend like learning to live life without her has been easy. We are fastly approaching our first angelversary and i am feeling very anxious. Thank you again for your heartfelt words, you will never know how much they mean to me! Yolonda Angel D'Lon Grace Mommy


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