The Beautiful D'Lon Grace Toney - Mothering Forums

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Old 05-17-2009, 03:21 PM - Thread Starter
 
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Hello Fellow PoPs (Parents of Preemies),

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 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. Teach people overall to love hard today because really nothing or no one is promised tomorrow. 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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Old 05-18-2009, 12:47 AM
 
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What a touching story. Thank you for sharing mama your strength is amazing!!!
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Old 05-18-2009, 12:59 AM
 
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Thank you for sharing D'Lon's story. I looked at her pictures and she was such a beautiful little girl - I can tell how lively and fun she was just seeing her. My girls are just about the same age now that D'Lon was when she passed away, and I can imagine the joy and wonder she brought into your life. The pain you have gone through since you lost her is beyond my comprehension, and I admire your strength in going on and sharing D'Lon's story to inspire others. I wish you peace and healing, Yolanda.

Betsy, mama to beautiful, strong MZ twins Lillian and Kate, born 11 weeks early on January 10, 2006.
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Old 05-18-2009, 06:31 AM
 
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your story touched my heart. you are one brave mama. you have been so blessed to have your daughter in your life! what an inspiration!
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Old 05-18-2009, 08:17 PM
 
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Thank you for sharing this amazing story about your beautiful girl!!!!

wife. dd1 : dd2
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Old 05-18-2009, 08:37 PM
 
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From one Katrina mama to another I wanted to say "Hi" and also say that your story of love for your little girl was inspiring, thanks for sharing!
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Old 05-18-2009, 10:55 PM
 
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As the mom of a 23 week, 4 day preemie, who just kissed her little girl good night, my deepest sympathies go to you and your family. You are an amazingly strong woman and thank you for sharing your story.

Michele - Homeschooling mom to Hadley, (10/03 - the 23 week preemie miracle) and Noah, (08/05)
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Old 05-19-2009, 01:04 AM - Thread Starter
 
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Thank you so much for reading my story and/or visting myspace to view pictuers of my girl or read my blog. I appreciate you! You have no idea what something as simnple as that can do for a person trying to find peace, while dealing with the worst thing in the world to have happen to them.

Telling my daughter's story allows me to keep her present even if I have to talk about her in the past tense. Thank you for allowing me to do that.

Yolonda
Angel D'Lon Grace Mommy
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Old 05-20-2009, 09:15 PM
 
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I'm so sad that D'Lon Grace passed away but it's clear she was so very loved.

Normal is just a setting on your dryer.
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Old 05-21-2009, 06:14 AM
 
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Thank you for sharing your beautiful girl with us, and for the courage and tenderness your family is offering the world.

joy.gifspread a lot of love joy.gif

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Old 05-22-2009, 04:20 AM
 
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Oh my goodness. Thank you so much for sharing you story with us. I looked at all of your pictures. D'Lon was so gorgeous and spunky. Looking at your pictures I felt like you really enjoyed her and she had such a full life. It may seem silly but I love that her hair was always so cute, as she was obviously cherished and lovingly cared for...those darling little bows. You are such an inspiration. My son has bad lungs too...your story really touched me today. I will hold my little one close and remember to make every day matter. You have reminded me that we never know how long our loved ones will be with us. Especially our little micro preemies. Thank you.
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Old 05-23-2009, 01:22 PM
 
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Yolanda, I am so so sorry for your loss. I looked at your pictures, and your daughter was a beautiful child. I'm sure your pain is so huge, I can't even imagine. *hugs*

There is another mother I know of going through this also. Her baby was premature, but she lived for 17 months when her lungs couldn't support her through a virus. Here is their link, in case it might be helpful.
www.thespohrsaremultiplying.com


-Lora
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Old 05-24-2009, 11:40 PM - Thread Starter
 
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Thank you Lora for your comment and for looking at all of my little girl's pictues. She was definately the light of my life and azgirl, thank you too for taking the time to look at her pictures. You dont know how much that means to me and no I dont think its silly that you liked the way I did her hair. I loved combing her hair. She was live little babydoll that I could dress up pretty and program too! It broke my heart to comb her hair for the last time the day before her memorial service, but I was determined to be the one that made her hair pretty for her special day!

Thanks again,
Yolonda

ps..Lora thanks for the link, I am going to check it out now.
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Old 05-25-2009, 01:04 AM
 
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Hi Yolanda,
I'm not a mom of a preemie... not even a mom of any, yet. But I saw your daughter and she was/is still just gorgeous. Her story will live on. I love the photos. Especially the ones entitled "Pretty Brown Eyes" and also "Mommy, I'm trying to use the potty!"! She's precious. Her happy little face, too cute! Thank you for sharing her life and your experience here, means alot to those of us who aren't yet mama's too

Lots of love and peace to you and sweet D'Lon Grace.

"When the external begins to define the internal, instead of the internal defining the external, one begins living as a mortal rather than as a universal being." ~ unknown
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Old 09-10-2009, 07:03 PM - Thread Starter
 
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Thank you so much. I really appreciate your kind words. I think she is a cutie too, but well I'm her mom.

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Hi Yolanda,
I'm not a mom of a preemie... not even a mom of any, yet. But I saw your daughter and she was/is still just gorgeous. Her story will live on. I love the photos. Especially the ones entitled "Pretty Brown Eyes" and also "Mommy, I'm trying to use the potty!"! She's precious. Her happy little face, too cute! Thank you for sharing her life and your experience here, means alot to those of us who aren't yet mama's too

Lots of love and peace to you and sweet D'Lon Grace.
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Old 09-11-2009, 01:11 AM
 
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Thank you for sharing the story of your beautiful little girl. You are amazing and clearly so was she.

Catherine and B stillheart.gif DS1 (6) biggrinbounce.gif DD (4) loveeyes.gif DS2 (1) drool.gif and expecting #4 shamrocksmile.gif on March 17, 2014.  
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Old 09-25-2009, 12:59 PM
 
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I have read many stories much like yours, but I had to reply here because your story differes in a big way. You have kept an amazing outlook thought what was definatley the hardest time in your life. Many many preemie moms could learn from you. (((hugs))) your sweet little girl was beautiful and she accomplished her goal during her short time here on earth. Im sure she is looking down on you and is very proud! Your an amazing mom.
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Old 10-01-2009, 02:09 PM - Thread Starter
 
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Thank you for sharing the story of your beautiful little girl. You are amazing and clearly so was she.
Thank you so much for your kind words. I really do appreciate them. Today I need them.

Yolonda
Angel D'Lon Grace Mommy
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Old 10-01-2009, 02:16 PM - Thread Starter
 
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I have read many stories much like yours, but I had to reply here because your story differes in a big way. You have kept an amazing outlook thought what was definatley the hardest time in your life. Many many preemie moms could learn from you. (((hugs))) your sweet little girl was beautiful and she accomplished her goal during her short time here on earth. Im sure she is looking down on you and is very proud! Your an amazing mom.
Thank you so much for taking the time to send me such sweet, sweet words. I really needed them today. I wont pretend that the current journey I am walking is easy, but I know that I am better person walking this journey because of my daughter's life. I agree with you, she accomplished all that she was suppose to do here on earth and managed to do it just as pure as the day she was born having never told lie and only knowing and recieving love. I dont know how many of us will be able to say that when it is our time to cross over.

Thank you so much for reading our story with the intent it was written. I worried that it would scared other preemie moms because ultimately my little girl died. But, to me, her story is full of success with all the odds she beat and the lessons she taught.

I really cant thank you enough for taking the time to write, my heart has been very heavy as we just came off her first angelversary on the 26th of september. I miss her tremendously, but I know she is waiting for me, for us to pick up where we left off when I get there.

Have an awesome day!
Yolonda
Angel D'Lon Grace Mommy
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Old 10-01-2009, 02:24 PM
 
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Yolanda,
You are such a wonderful mama, thank you for sharing the gift of your little girl's life with us. What a beauty she was and what joy she brought into this world. Every life is so precious, and you clearly show how deeply you have lived that.

May you feel at peace and feel her love with you always. Thinking of you during this anniversary time of year.

hugs, mamabutterfly

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Old 11-15-2009, 12:32 AM - Thread Starter
 
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Yolanda,
You are such a wonderful mama, thank you for sharing the gift of your little girl's life with us. What a beauty she was and what joy she brought into this world. Every life is so precious, and you clearly show how deeply you have lived that.

May you feel at peace and feel her love with you always. Thinking of you during this anniversary time of year.

hugs, mamabutterfly
Thank you so much! I really appreciate your kind words. Its just amazing to me how people site unseen has been able to lift my spirits in ways people I have known my entire life cannot.

Hugs to you!
Yolonda
Angel D'Lon Grace Mommy
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Old 11-24-2009, 10:56 AM
 
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Thanks for sharing her story. She was absolutely beautiful.
I have to preemies, Littlest was a 23 weeker too, who died after 6 weeks. And my little miss is a 30 weeker, but now very sick and fighting battle after battle for her life.

Peace to you.

-pixie, my dear, and (A-88), N-98, Littlest-06/00-08/00, J-03 & Little Miss Cotton Ball Button-03 (SN), S-05, Hope-loss 09/09, Bean-loss 04/10, and littlePopcorn due feb. 8th -11.
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Old 11-30-2009, 02:20 AM - Thread Starter
 
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Thanks for sharing her story. She was absolutely beautiful.
I have to preemies, Littlest was a 23 weeker too, who died after 6 weeks. And my little miss is a 30 weeker, but now very sick and fighting battle after battle for her life.

Peace to you.
Thank you so much for reading our story. I am so sorry for you loss. I pray that your little miss wins the battle she is currently in.

Peace and blessings to you!
Yolonda
Angel D'Lon Grace Mommy
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Old 02-01-2010, 04:26 AM
 
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I am so very sorry for the loss of your little girl. She sounds like she was a fighter! On an off note, my brother's name is Matthew and he is in the National Guard and was there during Katrina, what are the odds?

Jessica mommy to Cristian , Jaden , and Logan (Born 2/23/08 Kidney Transplant 9/4/09 )
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Old 02-08-2010, 03:16 AM
 
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Yolonda,
Thank you for posting your story and for the beautiful photos of D'Lon Grace--What a cutie!! I love that smile!
Thank you for your incredible strength and for sharing.
Jenny
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Old 03-18-2010, 09:56 AM - Thread Starter
 
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Yolonda,
Thank you for posting your story and for the beautiful photos of D'Lon Grace--What a cutie!! I love that smile!
Thank you for your incredible strength and for sharing.
Jenny
Thank you Jenny for reading our story. I really appreciate it. I agree, she's a cutie :-)

Take good care,
Yolonda
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Old 03-19-2010, 04:18 PM
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D'Lon Grace - what a beautiful name for a beautiful little girl. Thank you, Yolanda, for sharing your story with us. You have shown an extraordinary amount of strength by posting and I'm sure your little angel is so proud of you.
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Old 03-31-2010, 06:00 AM
 
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Thank-you so much for sharing your story. The light radiates through your words... it was just beautiful. Really, thank-you.

Weirdo Mama to amazing Aurelia, age 9 & Ember Roslyn, age 3!
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Old 04-04-2010, 06:57 PM - Thread Starter
 
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I am so very sorry for the loss of your little girl. She sounds like she was a fighter! On an off note, my brother's name is Matthew and he is in the National Guard and was there during Katrina, what are the odds?
Are you serious!!!!??? OMG...could it be? I dont know Matthew's last name. Can you please ask him if he remembers evacuating babies that were in incubators on September 4, 2005? The babies would have been brought via ambulance to a base in Belle Chasse, LA. We have been looking for Matthew. I wished I would have got his last name or something. I never got a chance to see him again. I never got a chance to thank him. If you can please ask your brother if any of this sound familiar I would greatly appreciate it. Thank you so much for reading our story!

Happy Easter!

Yolonda
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Old 04-04-2010, 07:09 PM - Thread Starter
 
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D'Lon Grace - what a beautiful name for a beautiful little girl. Thank you, Yolanda, for sharing your story with us. You have shown an extraordinary amount of strength by posting and I'm sure your little angel is so proud of you.
Thank you for reading our story. I wish I can explain what it does to my heart to know that yet another person has been "introduced" to my darling daughter. Not only that, it seems whenever I am having a particularly rough day, I normally have a message waiting on me from someone who has read our story and their kind words are able to add a little sunshine to this broken angelmommy's heart. Thank you

Happy Easter,
Yolonda
Angel D'Lon Grace Mommy
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