The Beautiful D'Lon Grace

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Joined: 05/26/09
Posts: 8
The Beautiful D'Lon Grace

Hello,

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.

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

fittoac's picture
Joined: 05/05/08
Posts: 383

I just read your post and went to your myspace. I just wanted to say how sorry I am that you lost your daughter. She was absolutely precious! I don't know what I would do if my worst nightmare was carried out as yours was, but I admire your courage to keep pressing on and getting D'Lon's story out to the world. You have my thoughts and prayers. :bigarmhug:

Joined: 05/26/09
Posts: 8

Thank you so much for reading her story and popping over to myspace to look at her photos. This is the hardest journey my husband and I have ever walked. I miss her every second of every day.

Yolonda

cmoll520's picture
Joined: 02/06/07
Posts: 7

:bigarmhug: D'Lon Grace is a beautiful, precious miracle angel. I am so sorry for your loss. You have an amazing story that I am sure will inspire many parents. Thank you for sharing.

Joined: 05/26/09
Posts: 8

Thank you. My daughter did leave us with an amazing story to tell, but the pain of just missing her is tremendous. Not confused about anything medical and I know that we were blessed that we had 3 years be at that they gave her a 10% chance at life. I know we are very blessed, but I just though she was going to make it. I thought she was going to live to tell her own story but that was my plan not God's.

Thanks again for your comment.

Yolonda
Angel D'Lon Grace Mommy

Joined: 03/16/15
Posts: 53852

What a beautifully tragic story! You and you husband are an inspiration! D'lon IS one lucky girl to have such a strong family. I know that even though your National Guard Angel has not read this story, he will most definatly be telling the world about how one precious little girl became a blessing to him. Your story should be shouted from the roof tops!

D'Lon Grace had a mission in her life and I think she accomplished it! Thank you for sharing her with us!

Joined: 05/26/09
Posts: 8
Thank you

Wow! Thank you so much for your beautiful words. My FIL is actually trying to help me locate Matthew. I would really love to see him again. I often wondered if he would remember her, and everyone assures me there is no way he could ever forget her. My husband Dwayne and I try to be strong. Some days we succeed, some days we dont, but rest assured no matter when the tears flow, its only because we miss her. We, like you, believe that she accomplished her mission too and we are just honored that we got to be her earthly parents.

Thanks again. Please think of us and keep us in your prayers as we approach her 1 year angelversary. Just thinking about makes me feel anxious.

Yolonda
Angel D'Lon Grace Mommy

"FeliciaRollier" wrote:

What a beautifully tragic story! You and you husband are an inspiration! D'lon IS one lucky girl to have such a strong family. I know that even though your National Guard Angel has not read this story, he will most definatly be telling the world about how one precious little girl became a blessing to him. Your story should be shouted from the roof tops!

D'Lon Grace had a mission in her life and I think she accomplished it! Thank you for sharing her with us!

Joined: 07/30/06
Posts: 66

What a beautiful, though tragic entry.
Thank you so much for sharing your story. You are truly an inspiration.
I'm so sorry for your loss of your brilliant little angel.
I will definitely check out the Myspace page.

Joined: 05/26/09
Posts: 8
Thank you

"photogalv" wrote:

What a beautiful, though tragic entry.
Thank you so much for sharing your story. You are truly an inspiration.
I'm so sorry for your loss of your brilliant little angel.
I will definitely check out the Myspace page.

Thank you very much for your kind words. We just got past her first angelversary and I tell you no one should have to live a such a broken life.

Take good care,
Yolonda

SparkleMomma's picture
Joined: 04/24/02
Posts: 648

:wavehello: Yolonda. Has there been any luck in locating Matthew?

I read and reread your story often and want you to know that you are really & truly an inspiration.

Joined: 05/26/09
Posts: 8

"SparkleMomma" wrote:

:wavehello: Yolonda. Has there been any luck in locating Matthew?

I read and reread your story often and want you to know that you are really & truly an inspiration.

No we havent found Matthew yet, but my father in law is working on it. Unfortunately, I do not have his last name. All I have is Matthew and he is a national guard that was stationed to work in New Orleans area during the Hurricane Katrina aftermath. My father in law feels confident that we will find him. I will definately post to the world when that day happens.

Thank you so much for reading my daughter's story. I really appreciate your taking the time to let me know how it has touched you. I must admit, I read it myself when I am feeling down just to give me the boost I need to keep my head up.

Take good care,
Yolonda
Angel D'Lon Grace Mommy

HopefulK's picture
Joined: 09/30/07
Posts: 16

It was an honour to read about your brave little princess.
x

youbeme's picture
Joined: 07/08/08
Posts: 29

So tragic and inspiring. Thank you for sharing your story.

Joined: 05/26/09
Posts: 8
Thank You

"youbeme" wrote:

So tragic and inspiring. Thank you for sharing your story.

Thank you so very much for taking the time to read our story. We are coming up on 18 months since she grew her wings and this is definately the hardest journey I have ever walked and I have absolutely no idea how I am going to do this the rest of my life.

Take good care,
Yolonda
Angel D'Lon Grace Mommy

Joined: 05/26/09
Posts: 8
Thank You

"HopefulK" wrote:

It was an honour to read about your brave little princess.
x

Thank you so much for reading our story. I really appreciate it your taking the time to do so. Nothing in life prepares you for the death of a child or the aftermath of pain that follows. I am one brokenhearted angelmommy, but I take comfort in knowing that I will one day see my most precious blessing again.

Take good care,
Yolonda
Angel D'Lon Grace Mommy

irisheren's picture
Joined: 11/22/06
Posts: 61

Thank you for sharing the story of your precious girl. My prayers and thoughts are with you all until you are reunited again.

Joined: 06/27/11
Posts: 14

Yolanda: She is truely a beautiful little lady and such an inspiration! You are to admired as well for having such an incredible outlook on such a tragic time. You were so lucky to be blessed with her even for a short time because I can tell by your story that she made your heart even stronger. Thank you for sharing her story and may angels surround her...

Starryblue702's picture
Joined: 04/06/11
Posts: 5454

What a beautiful story about an incredible little princess. I'm so sorry for your loss.

Joined: 06/24/12
Posts: 252

What a beautiful story. I have been hospitalized since 23w3d (I am now 29w3d, thank the lord) and your story has touched my heart. I wish you health and happiness.