Yolonda

I just pm'd my email address to you. Thank you so much for your reply. I am doing one on one counseling. I tried group and that just was not for me, but the one on one allows me to just talk it out and that's what I need right now. I wish I had work or something, but I had been a stay at home mom for now 4 years and this is an awful time to re-enter the work force. Most days I really wish I had it, but some days I'm glad I dont. I am now 9 months into my journey and while that raw gut wrenching pain that you have from the moment you open you eyes to the time you go to sleep, if you are able to go to sleep, is not there any more. Well its not there all day anymore. I have my good days, but even in them are 2 or 3 or 4 bad moments where the wind is knocked out of me when the reality of what has happened taps on the shoulder and says I'm still here. Anyway, I wish you peace and strength as you continue your journey. Take good care, Yolonda Angel D'Lon Grace Mommy

Thanks Boo. I have to believe that I will one day be reunited with my beautiful girl because if I didnt, I would not be able to continue to do this without her. How are you? Is there a button on your blog where I will get an email alert when you post a new entry?

I really am tired of marking time. Soon, very soon, I will stop marking her death in months and will start marking it in years. The last couple of days, I have been thinking of day that she died. I got up that morning at 5am like I did every morning so I could spend a couple of hours with her before shift change. I went to the chapel like I did every morning before going into the PICU and on that morning, I prayed the prayer no Mother ever wants to have to pray. But because being a parent is the most selfless act one will ever play out in their life, I basically asked God to either heal her or take her, but it cant go on like this. Full support for 6 days and every time they try to wean she crashes. It can’t go on. As I was leaving the chapel 2 things happened…as I walked out the door, I heard clear as day “Today is the day”, instead of going into the PICU I walked outside of Children’s and found someone with a cigarette and for the first time in 10 years I smoked. I finished that cigarette in what seemed like 3 inhales. I didn’t think about what I heard leaving the chapel again that day until Dr. Levine came and woke me up just as I dreamt D’Lon was holding onto my leg. What I know now is the dream I was having prior to them coming to ask if we wanted them to try to save her was her coming to me at the time of her death because 7 minutes later they told us they were unable to get her back. I chose not to be in the room when they tried because I knew in my heart she was already gone and I was already in survival mode. I knew I did not need that image in my head, as it was bad enough I am going to have to live with images of me and my husband holding our most precious blessing lifeless body. I had a revelation a few months ago. I believe, no I know that D’Lon died on September 20th when we left out of home in the ambulance. Yes she hung on for 6 days but that was for us to come to grip with the fact that there was a real possibility that we were going to lose our girl. I feel God and my beautiful baby girl allowed me to feel like I was somewhat in control because they knew when I prayed that prayer on the morning September 26, 2008, I understood that I had to love her enough to let her go. Dr. Levine came and got me at 9:40pm and she was pronounced as 9:47 pm. The first person to came to mind after he walked back in that conference room was Kate St.Clair and a sentence from her blog and I said aloud to no one really “she was snatched away, just like that". Rest in Paradise My Love….I miss you every second of every day. Every day that we live, we’re a day closer to you, still trying to make you proud as we promised we’d do.

I am so sorry for the loss of Corey. I, too, know that pain that you speak of in your post as I lost my only child - a 3 year old little girl 8 months ago. Losing your child is a very unnatural life altering event. I know that this journey I am on will forever run concurrently with whatever journey I am on for the rest of my life. I am so sorry that you have joined this club with the high price admission that no one ever asks to be a part of. Take good care of yourself, Yolonda Angel D'Lon Grace Mommy

Marty T thank you so much for your comment and adding a link to my blog. I really appreciate it. I dont know why, but there is something very healing in knowing that people come to my page, look at pictures of my girl and read my blog if they chose to. I just want people to know that she was a physical part of this world who touched the hearts of anyone she came in contact with and taught me and her daddy so much. Yes we are walking some of the darkest days of our lives right now, but we always have our light right beside us. mlg, thank you too for reading our story and looking at her pictures. I think she is beautiful too :-) I miss those big brown eyes more than i have words to express. I close my eyes and I see them looking back at me. For a time, I could only look at unposed pics of her, I couldnt take the ones where those beautiful eyes were staring back at me. No we are no longer the Ambassador Family, it was only for the year 2007. However, I co-chaired the family team committee in 2008. I also sit on a welcoming committee for a march of dimes online support group called shareyourstory.org (grace's mom). I will always be involved with them on some level for the rest of my life. I did not participate in the March for Babies campaign this year, it was just too soon for me, but I plan on fundraising and marching in honor of my daughter next year. Thanks again for your comment and for looking at my angels pictures. Take good care, yolonda

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