This memorial website was created in the memory of our baby girl, Vanessa Lane Johnston, who was born in Florida on October 02, 2002 and passed away on October 08, 2002. We will remember her forever.
~How very softly you tiptoed into my world... almost silently. Only a moment you stayed, but what an imprint your footprints have left upon my heart~
I just want to say thank you to everyone who visits Vanessa's site and for all of the warm and loving messages that are left here. One of the many pains of losing her was the thought that no one would ever know this tiny person who has so profoundly touched my life and my heart. It means so much to know that her life touches others. Thank you.
If I could have a lifetime wish a dream that would come true I'd pray to God with all my heart for yesterday and you. A thousand words can't bring you back I know because I've tried and neither will a million tears I know because I've cried. You left behind my broken heart and happy memories too I never wanted memories... I only wanted you.
Vanessa Lane's Story
In late 2001, we decided that we wanted to start trying to have another child. We already had a son, Michael, born September 13, 1996 and a daughter, Kaelyn, born January 22, 2000.
We started trying to conceive another child around October of 2001. I became pregnant sometime around New Years Eve. We found out I was pregnant on January 17, 2002. We were so happy! Everything seemed to be going smoothly. I had a little morning sickness but not too bad. I heard the baby's heartbeat at 10 weeks and felt first movements at 16 weeks.
When I was 18 weeks pregnant my AFP test (alpha fetoprotein) came back elevated, and I went in for a level II ultrasound. We found out that our baby had some serious problems. We were told that she had multiple malformations including serious malformations of the head. I remember feeling like I was in a dream...a nightmare. I couldn't believe that this was actually happening. I felt that way every day of my pregnancy thereafter. I would wake up in the morning and remember what the doctors had said... that my baby probably would not live very long outside of my womb. I spent the days in a fog, and I fell asleep every night praying for a miracle. I felt that at any moment I would wake up from this nightmare and roll over and tell my husband about the horrible dream I had about the baby... just another one of those bad pregnancy nightmares... I had them with all of my children... but it wasn't a dream.
During my pregnancy they couldn't tell us exactly what had caused the problems, and it wasn't until after her birth that we finally found out what had caused them. As I reached the end of my pregnancy, they told us that she most likely would not survive the delivery, and if she did, there would most likely be nothing that could be done to repair what was wrong with her head, but we were hopeful...we were always hopeful.
Vanessa was due September 23, 2002 (my mother's birthday). This amazing little baby that the specialist told us might not even make it to term was now nine days overdue. On the morning of October 2, 2002, I had an appointment with my midwife. She wanted to talk about chemical induction, but I absolutely did not want that. She felt we needed to do something to "get things moving" so I allowed her to do a sweep of my membranes. I began feeling cramps right away. By 4:00 that afternoon I started to have my first uncomfortable contractions. By 6:00 p.m. they were significantly stronger so I called my midwife.
We left for the hospital around 7:30 p.m. We got to the hospital at 8:00 p.m., and I was 5 cm with very strong contractions, but they were following no real pattern. I progressed very quickly and went from 5cm to 10 cm in a matter of minutes. Vanessa Lane Johnston was born on Wednesday, October 2, 2002, at 8:36 p.m. She weighed 7lbs and 5 oz and was 20 inches long. When she entered this world, my midwife laid her on my chest and told us that she was probably taking her last breaths and that we should say goodbye, but she didn't go. She stayed with us for 6 days.
She was born with Acrania (part of her skull had not formed properly) and an open encephalocele (an opening at the crown of her head) caused by Amniotic Band Syndrome (ABS). ABS had also affected her fingers on both hands and one of her feet. She must have had a band around her head or across/around her neck at some point before the neural tube finished fusing. The band disrupted the proper development of her brain and the top of her skull. She also had a condition called Choanal Atresia, which is when the two-layer membrane between the nasal and oral cavities fails to thin and rupture like it is supposed to. This thinning and rupture of the membrane is what allows us to successfully breathe air through our nose and into our lungs. Since amniotic bands restricted this from happening for Vanessa, she couldn't breathe well through her nose.
The doctors said that due to the encephalocele (opening at the crown of her head), infection was imminent. They told us that there was nothing that could be done and to take her home and keep her comfortable and enjoy her while we could. They told us that she would probably only live for a day or two, but our little girl was such a fighter. She acted like any other newborn; she nursed and everything. It was very special for me to be able to share that closeness with her. During my pregnancy, I had hoped that she would be able to nurse, and at that moment when she actually latched on I just felt so proud of her. I don't think anyone thought she would be able to do it. It was difficult for her since she could only breathe through her mouth. She would nurse then stop and take a breath. Feedings took a long time, but my baby girl wouldn't stop until she was content. She was so much stronger than anyone had imagined.
We had Hospice helping us. They helped a lot by giving us support and coming out everyday to check on us. We never put Vanessa down. We tried to fit a lifetime of love into those six days. From the time she was born until the time she passed, I got a total of about 6-8 hours of sleep. I just took little 15-20 minute naps here and there. I didn't want to miss a moment with her, and I also wanted to be holding her when she decided to go. She loved to be held, and we loved to hold her. When she was awake and she looked up at you...you felt honored...you felt blessed.
My husband and I did the dressing changes on her head. It had to be done quite frequently, about every 4-5 hours. I can't describe the way it felt to do this. It was the hardest thing I've ever done. In my mind I kept thinking... I should be giving her a bath and washing her hair, not changing these blood soaked dressings on my precious baby girl's head. It was hard seeing her like that, but we wanted to be the ones doing the dressing changes because we were very gentle, and she knew the difference between her mommy and daddy and other people. It was better for her that we did it and not someone else. Hospice kept us supplied with all the dressings and sterile gloves. They were so supportive.
When she was 4 days old she started having severe seizures. I'll never forget the look on her face when they happened. To see that look on my little newborn baby's face was unbearable. We had to start giving her seizure medicine to keep the seizures away, but the medication put her to sleep completely, and she wasn't able to nurse. We tried so hard to feed her with a medicine dropper, but she was just too sedated to do it. So for a day and a half she ate nothing. The doctors said sometimes that is the choice you have to make. If it's between feeding her and giving her the medicine to keep away the seizures, then you have to choose the medicine, but it was so hard. As a mother, it was hard to accept that not feeding my baby was what would be best for her.
But on her 6th day, her last day with us, she was awake. The night before we had to start giving her an additional seizure medicine because the first medication wasn't working by itself anymore, and the combination of the two medications didn't have a sedating affect on her. Our little girl was awake, and she didn't have any seizures at all that day, but she had lost her ability to nurse, which is common for babies with brain abnormalities. Once again, we were amazed by the determination and strong spirit of our baby girl. She was able to drink her milk from a small medicine dropper. She took an ounce and a half of milk. All the Hospice nurses and our pediatrician were so surprised, but by this time, we all already knew that she was calling all the shots, and the doctors and nurses stopped trying to predict what she would or wouldn't do. She was proving them wrong left and right long before she was even born.
On Tuesday, October 8, at around 8:00 p.m., she started to breathe differently. She seemed to be drawing in her breaths really hard. She was still awake, but she seemed to be close to passing. It was just Mike and I in the house with her. She was fighting so hard, and there were so many times during those six days when the doctors or nurses had told us her time to go was near, and then she would hang on despite everyone's predictions. She was just fighting so hard, and I realized that I had not yet told her that it was okay for her to go. My husband and I decided that it was time for us to talk to her and let her know she could go anytime she wanted to. We talked to her for quite a while. We told her how much we love her and how beautiful and special she is. We told her that it was OK for her to go and that she shouldn't be afraid and that we would see her again one day. We told her that her body just wasn't working for her, and where she was going she would be free. A little while later, her breathing changed even more. It was 9:30p.m. and time for her medicine. Usually even when she was sedated and we tried to give her medicine, she would react at least a little, but this time she didn't. She was breathing still, but it was like she was in a coma. She was completely unresponsive. We both held her close and told her we loved her. At 10:03p.m., she took her last breath. She passed in our arms. We truly feel like we helped her cross over. She didn't go when they all said she would... she didn't go until we told her it was okay.
Hospice arrived and pronounced her, and our family came to say goodbye. My husband and I bathed her and dressed her in a beautiful white dress. She had lost weight from not eating, and the dress was a little big, but like the chaplain from hospice said, "That's OK because she needs room for her wings." After she was dressed, the funeral home was called. Then a man in a dark suit came and took my baby away. I've never in my life felt that kind of pain. I didn't think it was possible to hurt that much. I felt lost and empty for so long after I lost Vanessa.
To those of us who were lucky enough to know her, the world is definitely a better place because of her having been in it. I miss her so much, and she is in my thoughts always. I miss the life I would have had with her and the woman she would have grown into. I miss my baby and I want to hold her and kiss her cheek and smell her sweet baby breath.
She was such a beautiful, sweet baby girl... just a beautiful little soul whose time on earth was far too brief. She was so strong and such a fighter. She touched the hearts of everyone who knew her. We miss her so very much, and we still can't believe that this has all happened. It just seems so unreal. She was so precious, and I feel honored that she chose me to be her mother... even if it was for such a short time. In the short time I had with her, 9 months of pregnancy and the 6 days I held her in my arms, she has affected me and my life more than anyone else ever has or ever will. She has changed the way I see myself, my children, and just life in general. She has touched my heart and my life more than I could ever explain here with words. We all have our journey to complete. This was Vanessa's journey. I am grateful and honored that I was a part of it.
In my dreams, you are alive and well Precious child, precious child In my mind, I see you clear as a bell Precious child, precious child In my soul, there is a hole That can never be filled But in my heart, there is hope 'Cause you are with me still
In my heart, you live on Always there never gone Precious child, you left too soon Tho' it may be true that we're apart You will live forever... in my heart
In my plans, I was the first to leave Precious child, precious child But in this world, I was left here to grieve Precious child, my precious child
In my soul, there is a hole That can never be filled But in my heart there is hope And you are with me still
In my heart you live on Always there, never gone Precious child, you left too soon, Tho' it may be true that we're apart You will live forever... in my heart
God knows I want to hold you, See you, touch you And maybe there's a heaven And someday I will again Please know you are not forgotten until then
In my heart you live on Always there never gone Precious child, you left too soon Tho' it may be true that we're apart You will live forever... in my heart
The Cord / Mommy
by Unknown Author
We are connected,my child and I,
by an invisible cord not seen by the eye.
It's not like the cord that connects us 'til birth.
This cord can't been seen by any on Earth.
This cord does it's work right from the...
Happy 10th Birthday!! / Mommy
Happy Birthday baby girl! I cannot believe that you would be 10 years old today. I bought something for your display case. I should be getting it in the mail any day now. It reminded me of you so much.
It is a little, tiny, polymer clay doll tha...
Happy 9th Birthday Baby Girl!!! / Mommy (mother)
Happy Birthday Vanessa Lane!! Oh my goodness! I just can't believe it has been 9 years..... 9 years since I held my baby girl. I love you little one and I miss you and think of you ALWAYS. You hold a very special place in my heart. ...
♥ I love you ♥ / Mommy
Thinking of you always sweet girl. I love you.
Ellen / Ellen McCarthy (loving friend )
After reading this I remember every second of those few days. Happy Birthday Vanessa from Mema Ellen Aunt Beth and Aunt Sarsi.
Barbara well written.
We love you and your wonderful family.
Vanessa has touched the hearts of everyone who was lucky enough to know her. She has even touched the hearts of many people all over the world that never knew her but who have read her story on the various web sites that we have for her. The Internet can be a wonderful thing!
Vanessa is in our lives everyday. She is always in our hearts. I always have family members telling me of different experiences they have had where they know that she was with them. I believe it because I have those experiences myself.
On the 1st anniversary of Vanessa's passing, October 8,2003, we planted a little garden for her out in the front yard. We planted two pink rose bushes, calendulas (they’re her birth month flower), periwinkles, pentas, and begonias. The rose bushes we planted had these huge fragrant blooms when we first put them in the ground. They were beautiful. We live in Florida and the rose bushes we got were supposed to grow blooms for most of the year.
After those first blooms died, we didn't get any more roses. I fertilized and watered, but there just wasn't any roses blooming on those rose bushes! The calendulas started to grow and the other plants were doing well, but no roses. I wanted those roses to bloom so badly!! Seven months went by with nothing. Then in May 2004, a week before Mother's Day, I noticed a little bud. I watched it over the next couple of days, but it started to droop quite a bit and it looked as if it was going to die without blooming.
Then on the morning of Mother's Day, I went out front and looked in Vanessa's garden, and there was the rose fully bloomed! It was so pretty and so fragrant! I brought everyone out to see it. I took some pictures and then I clipped it the next day and put it in a vase on Vanessa's memory case mantle.
All those months with no blooms on those bushes, and then a week before Mother's Day one shows up and then blooms exactly on Mother's Day! That one was special...my Mother's Day present from my baby girl. There are signs all around us. If we just open ourselves to them we will see them.
I believe that before we are born we have already chosen the family we will be born into. We choose the souls that we want to be connected with. That is why I always say that I am honored that Vanessa chose me to be her mother. She has taught us all the true meaning of love and strength.
I think that those we remember can never really die... they will live on through us and in our hearts. About 9 months after Vanessa's birth and death, I got a portrait tattoo of her. It looks just like her, and I love having her right on my arm where I can see her and kiss her face!
In July 2004, Vanessa became a big sister! On July 30, in the same room where Vanessa was born, Liana Jolie joined our family. She was born the day before my birthday! She is healthy and happy, and as she grows, she will learn all about her big sister Vanessa. We have Vanessa's pictures all over the house. She is all around us. I know she watches over her brother and sisters.
I miss her and I always will. She has touched me so deeply. My heart and my life are better off because of her having been with me. My children have been my greatest teachers, and Vanessa has taught me so much, and she continues to do so through her loving spirit. I will love her and miss her always.
Vanessa has another little sister!! On July 25, 2008 at 7:15 a.m. Kyah Lanae was born. She was born at home unassisted (only mommy, daddy & the sleeping kids). She was 8 lbs 3 oz and 21" long. She loves to sit in her swing or bouncy seat in front of Vanessa's memory case and look at all the pretty, sparkly stuff inside.
A Poem I wrote...
I wanted to share a little poem I wrote. After we lost Vanessa, we really didn't think there would ever come a time when we would ever consider trying to have a child again. It was just too scary to even think about. After Vanessa's 1st birthday and the first anniversary of her passing, we started to talk about the possibility of having a baby. We didn't tell anyone, and as far as any of our family knew. we were not going to have any more children. We decided to try, and we were successful on our very first cycle. I became pregnant at the very end of October 2003. As a matter of fact, the "fertile date" was Halloween. As soon as I got a positive pregnancy test, I announced the news to our unsuspecting family with this poem. I went to each of their houses and told them I had written a poem about motherhood and wanted their input on it. Here's the poem...
My Journeys As A Mother And Wife
I have embarked upon the journey of motherhood more than once. What a wondrous miracle! A person created in just 9 months!
Every child born to me, unique in their own way. I am thankful for my children every minute of every day.
My first child born to me... a son.... so handsome and so strong! My second child born.... a daughter... so beautiful with hair so long!
My third child born to me... my precious daughter, Vanessa Lane. Only a moment in my arms how I wish she could have stayed. And although I cannot touch her, my love for her will NEVER fade!
Each one of my sweet children, so precious and so dear. My angel who is far from me, and my children who are near.
My journeys into motherhood have been the best times in my life. The things I like most about myself are that I'm a mother and a wife.
It seems like only yesterday my role as "mommy" first began. Now here I am all these years later embarking on that journey once again.
Another sweet amazing journey, as a mother and wife. For you see... in just 8 short months I'll welcome another child into my life.
(Estimated due date: July 24,2004!!)
Needless to say there were many tears that day!!
My pregnancy went well, and Liana Jolie Johnston was born on July 30,2004 (the day before my birthday!) She was born in the same room where her sister Vanessa Lane was born.
We have Vanessa's pictures everywhere, and Liana will know who she is and how amazing she was.
Our children are our gifts. Whether we have them for 6 days or 60 years. No matter if we are lucky enough to hold them in our arms, or we only get to hold them in our wombs. They are our greatest teachers. Keep them in your heart and cherish them.