DeLanee's Story

10 years ago, Becky and Tommy, were blessed to be pregnant with their second child. Shortly thereafter they learned that they were going to be parents to a little girl, but the probability of their daughter living for very long was extremely low. Their daughter was diagnosed with a condition called Dandy-Walker Cyst. The doctors believed that their baby girl would deteriorate and pass away during pregnancy, but much to their surprise DeLanee developed until 28 weeks gestation when she was delivered and lived for three hours. As you can imagine, these 3 hours was precious time that they spent as a family with their daughter taking pictures, bathing, dressing and holding her until she passed away in their arms. Upon DeLanee's passing, the nurses brought the family a box to put their daughter’s belongings in to take home with them. Because DeLanee was born in January the nurses were able to find a leftover Christmas box. That Christmas box became extremely special to them and they clung to it and the contents inside that held their daughter’s precious belongings as they left the hospital without their baby. It was because of this box that the inspiration for Lanee’s Legacy began. . .

Thursday, January 28, 2010

A Special Day to Remember

Today is a special day for Lanee's Legacy and especially for me. Today, 6 years ago I was blessed with a sweet little girl who would change my life forever. Each morning on the 28th of January as soon as I open my eyes and my mind settles into reality, it starts to replay the events of 6 years ago. This year was no different. The first thing my eyes saw on the morning after I had DeLanee was her. I was laying on my side facing her tiny baby bed and when I opened my eyes, I saw her little profile. She had a very cute little nose that looked like her brother's and I remember thinking how similar their noses were. This morning when I woke up, I wished so badly I could see that little nose again. I had her at 12:58 a.m. on the morning of the 28th and so waking up to the night's events were so blurry and almost like a dream. It was a terrible reality to wake up to. Everything that we had been privileged to do with her the night before was now over and now we had to move on to the stuff that nobody wants to face. We had to take care of the "details" and I wished we could just rewind time.

I'd like to share some of the moments we were able to capture with DeLanee in the short time that we had her. Thank heavens for pictures and that we can, in a way, "rewind" time to replay moments that are precious to us. I realize I have never shared pictures of DeLanee on this blog. Many mom's who have lost babies prematurely sometimes are hesitatant to share their babies because they don't always look the same as full term healthy babies. They are smaller, not developed fully, and their skin is so fragile. If they have medical abnormalities that are visibile this can be uncomfortable for some people and the last thing a mom wants to see is the look on someone's face or hear a comment that is hurtful when they are looking at their precious baby. DeLanee's condition caused her entire body to become hydropic. The cyst she had developed in utero filled her entire body and major organs with fluid which is what caused her demise. Her skin was also very dark from this as well. She weighed 4.6 ounces at birth of which 2 lbs of that was fluid. To me though, she was perfect. My entire pregnancy I cherished her every move and prayed that I would be able to hold her for even a moment while she was alive. I wanted her to feel of the love I had for her. I knew I couldn't take away the challenges she had been given but I needed to be able to love her through it. So, when I was able to finally hold her and love on her, it felt so good. We were so blessed to have an amazing night with a special little girl. We gave her a name, a blessing, bathed her, dressed her and loved on her until it was time for her to go. Almost my entire family was in that room and their was a lot of love going on! I will always long for more. . .but I am thankful for what I was given.

This is my sweet little DeLanee. It looks like I have gigantic hands in this picture, but my hands are really quite small. When I look at her hand clutching the tip of my finger, it reminds me of just how tiny she was.

This is DeLanee's older borther, Garrett. I know these two have a special bond. He called her "TeLanee" and I think he too was eager to give her the love he had as well. Do you see the two noses? Garrett is 9 years old now and loves her just as much.

In this picture, he was helping zip up her little outfit after we had bathed her.

The following pictures are just some of the family that was in that room:

The quote that goes on the top of Lanee's Legacy's boxes read:

Some people come into our lives
and quickly go…
Some stay for awhile and leave footprints in our hearts.
And we are never ever the same.

These are DeLanee's footprints:

Today was a wonderful day. New memories were made and her footprints continue to be in not just my heart, but others. I know her little footprints and have made it into many lives and I'm so thankful for that.

We had an AMAZING response to our challenge. THANK YOU, THANK YOU, THANK YOU!! We are still tallying up the numbers and are anxious to share them with you. It is such a humbling position to be in to witness the generous hearts of so many wonderful people that show their love to those they don't even know. Because of your donations, these families will also be able to capture and preserve vital memories that they too will be able to "rewind" when they feel like it.

Tuesday, January 19, 2010

6 Years of Change (and a challenge)

We have a challenge that we hope you are up for and that I want to tell you about, I hope you'll endur with me for a minute as I explain why.

Very soon it will be what would have been DeLanee's 6th birthday - in 9 days to be exact. Every year at this time (actually starting on December 2nd), my thoughts and heart are reminded of everything that we were going through during that time. Why December 2nd? December 2nd is the day I had an appointment with Phoenix Perinatal Associates. I remember being so sad and afraid of the results that I was about to find out. I was praying for a miracle but preparing myself for whatever the outcome may be. I knew no matter what that I would carry the pregnancy to the very end, but I hoped that we would be given a favorable outcome. I didn't get the prognosis we had hoped for that day. In fact, it looked very, very bad for my daughter's fate. I layed on the ultrasound table and listened as the ultrasound tech told me one by one everything that was wrong with my little girl. I had never felt more heartbroken than what I did that day. The diagnosis day, December 2nd, is what started a whirlwind of events that lasted until January 28th. Actually, anyone who has lost a child knows that it lasts much, much longer than that.

Here I sit, almost 6 years later, thinking of my sweet daughter, how I miss her and wish I could just hold her and love on her. I wish I could be attending a ballet recital she was participating in. I wish I was going to visit with her kindergarten teacher at parent teacher conference when I visit her brother's teacher. I wish she could have gone and rode horses with me and my kids last week at their grandparent's house. I wish for this and so much more.

Last week the Lanee's Legacy board had a meeting. We always start our meetings with what we call a "Lanee's Legacy moment". This is our time to share any stories or feedback we have received from anyone who has contacted us. We have found that by starting our meetings this way, it motivates us and inspires us to continue moving forward. A couple of weeks ago we were contacted by a mother, who had lost not just one, but two babies. Her kids are all grown now and she is blessed with 21 grandchildren so far. She lost her first little boy to an umbilical cord accident and was born still many years ago and then a few years later gave birth to a baby boy, Nathan, who was diagnosed with Trisomy 18 and lived for 7 weeks. She had 9 children in all and told us that she knows great joy but also knows the meaning of grieving the loss of her children. She told us that "my arms still feel the loss, even though my life is full as I've been so blessed with many children and grandchildren." She also told us that after she delivered at Mesa Lutheran Hospital she felt like the nurses and staff were very kind and helpful, but still remembers how empty her arms felt coming home.
Smith Family with baby Nathan 2 days before he passed away.
So now, as I am coming upon my 6 year anniversary of DeLanee's birth and death, I am thinking of my new friend, Linda Smith, and what it might feel like when I am in her shoes and have been a mother of an angel baby for nearly 20 years.
I also have been thinking about the boxes and how they have developed over the past 5 years as well. I came across pictures of the very first boxes that were put together on DeLanee's first birthday. Oh, how they've changed! If I remember correctly, I donated just 20 boxes in 2005 on her first birthday and they were just the boxes - nothing inside of them. Every year since then, they have developed and grown into something more and we donate more often than just her birthday. We feel so blessed that we have been able to help so many families since her first birthday (somewhere in the neighborhood of 450 boxes) and can't wait to see how many more families we can help - especially after 20 years.
What they looked like the first year:

In the last few weeks we have been able to add 4 new hospitals to our list of those we donate to. They are:

Casa Grande Regional Medical Center;
Scottsdale Healthcare (Shea Campus);
Yavapai Regional Medical Center; and
Banner Baywood.

We are confident that this list will continue to grow not just here in Arizona, but other states as well. (Hopefully we'll have some updates on out of state hospitals very soon)! But as you can see, we are growing to meet the needs of other hospitals as they attend to those who are grieving the loss of their baby. Now more than ever we are in need of donations that are listed on the right of our sidebar. Not only do we want to make sure that a mother's arms are filled with something as she leaves the hospital, but that they are also provided with necessary items to help them through their grieving process. We recently heard from a mother that told us if she had not been given a camera in her box, she would not have any pictures of her daughter. When I heard this I cried. The impact of what that means for Lanee's Legacy and what we need to continue to do is enormous. The pictures of my daughter are so priceless to me and I can't imagine not having them. Every mother must be given the opportunity to take pictures of their babies if they want. We want to make sure that this happens!

So, the challenge is this. As DeLanee's birthday nears in just 9 days, I would like to pose a challenge to any who would like to participate in seeing just how many items we can collect for the boxes that will be donated to these new hospitals that are requesting them. You can drop off any donations to Phoenix Perinatal Associates located at: 1840 S. Stapley Drive, Ste. 131, Mesa, Arizona 85204, or, you can contact any one of us at our e-mails listed on the right and we will make arrangements for your donations to be picked up. We also have a pay pal button as well as a PO box that you are more than welcome to use for monetary donations or otherwise. It is: Lanee's Legacy, P.O. Box 601, Queen Creek, Arizona 85142. Let's see how much "change" we can make from that first year we donated to now. We'll update you with our success!