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 out without their help. D'Lon Grace 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 Grace 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 Grace 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 with Project: D’Lon Grace Travels 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

"...birth can be very stressful on the bodymind system…yet it is extremely taxing physcially and emotionally. The residual impact of the stressful experience will oftentimes lead to hypo-arousal..."

While this may be true, it does not have to be!  Birth does not have to be stressful or taxing.  It can be peaceful, empowering, and yes, EASY.  I birthed two babies using the philosophy and techniques of HypnoBirthing.  There are so many myths surrounding birth (just as there are surrounding parenting).  I just worry about moms-to-be reading this and expecting this to be true.  The mind really does shape our experiences.

Zoe 

Remember your baby develops most optimally in relationship to you. When our children hit the toddler stage we begin to start feeling some pressures around socialization. Other than the ocassional interaction with another child of a similar age...don't give in if you don't have too. The best socialization is socialization with the parent. Oftentimes we make the mistake of moving our children to quickly into relating with other children before there brains are ready. I encourage you to read my e-book Parenting Softly for some basic and specific guidance on this stage of development.

There's lots of parental confusion at this stage. Do I let him do this, do I stop him from doing that? Am I saying "no" too much? Should I be using "time-out" if so how? How do I teach him best??? Feel overwhelmed yet? All of these questions can overwhelm parents. The first thing I recommend is that you slow down, take some deep breaths and remember there is nothing that you have to make a decision on right this minute, and no decision you make is gonna be life or death. A part of parenting is getting to make mistakes and learn from them. The key is to be flexible, open, and understanding.

There are so many potential questions at this stage I think I'll let you lead and I'll follow. I'm sure we can find the answers if we put our heads together.

B.

How are you feeling? You could be on top of the world, or you could be willing a bit sad or maybe even depressed. It's important to really pay attention to how you are feeling and don't be ashamed if you feel depressed. So many folks wanna say, "well what do you have to be sad about you have a new baby" but remember your body might still be grieving...you could still be really stressed, not to mention maybe even having to consider going back to work...that's a hard one for many parents.

For the depression or sadness, talk to a friend, especially your spouse if you are married. You might even seek out a life coach to help give you some direction. The key is to communicate and be open. Don't hold your feelings in.

Regarding childcare, that's a sticky issue. Try to be as sensitive as possible to what will be ideal for your baby and obviously fit within your budget. If you have a good relationship with your parents and one of them is not employed or is retired it would be ideal to recruit their assistance for childcare. Perhaps otherwise you can switch up your work schedule...a number of companies will now permit new parents to work from home. If you must do the daycare route try to choose one that is warm and inviting, doesn't mind you popping in, and has a very low staff to child ratio...don't be afraid to advocate your baby getting the best possible.

Hopefully you are neither sad or depressed and don't have to leave your baby just yet. At this stage you are gonna have start learning to follow your baby's lead a little bit more, trusting that development can come naturally and easily. Don't be discouraged if your baby isn't developing in some areas, they will come. All children develop a little differently. An excellent source of information is http://www.askdrsears.com William and Martha Sears are pioneers in sensitive baby raising, attachment parenting, and many other issues that new parents face.

I'll try to help the best I can, but oftentimes even us experts need to refer to an expert!

B.

As for your baby the world is new and overwhelming. Just think of all of the new sensory expereinces your child is being exposed to in a moments time from womb to world...whoaa...talk about welcome to DisneyWorld! Therefore she will sleep a tremendous amount, because suddenly her brain begins to spurt and develop faster than ever before, this is overwhelming also. You can help by keeping her close...skin to skin is ideal when you can do it, lots of baby-wearing, breastfeeding is ideal, take naps with her, lots of eye to eye gazing, and lots of support when she cries...because remember the world is new!

Congratulations.

Perhaps you have a question or concern?

B.

1. Make every effort to be with your baby. Fuss with the doctors and nurses if you have to, move a mountain to be with your baby. Your baby has been with you and only you for up to six months and beyond...being without you is very scary and overwhelming even if it appears that he doesn't know any difference. He does.

2. Get skin to skin contact everytime you can. Just breathe, rock, hmm, and think soft thoughts.

3. Start nursing as soon as you can. Both you and your baby need the connection as well as the oxytocin response (the anti-stress/ bonding hormone) as much as you possibly can and nursing is the most advanced way to create this response.

4. Breathe. It will only make it more difficult for the two of you if you are stressed out. Everything is going to work out as it should. Try to relax. Take slow, deep, steady breaths inhaling into your nose, exhaling out of your mouth.

5. Dad...honor your wife. Step in where she can't. Take care of her, do as she needs you to, be there, check on the baby often and don't let anyone stress her out...that includes you!

Perhaps you have other questions and thoughts about preemies that you would like to share?

B.

The other question which is common: Will I be a good parent? Well there is an answer to that one as well and it doesn't have to be frightening at all. The answer is you will be as good of a parent as you seek to be! John Bowlby, recognized as the Father of Attachment, stated that we mother the way we were mothered. I revise that a bit to say we parent the way we were parented...unless you make a mindful effort to do otherwise. Parenting or mothering the way we were is scary for many of us. The key is to understand that for the negatives you may have experienced as a child there are were many positives. Appreciate the positives and seek to grow through the negatives. Don't be a hostage to the negatives.

Perhaps you have questions now that you are pregnant?

B.