Post by Lynn
Lilian Grace Harris was born on January 9, 2010 at 2:29 pm and
passed away that same day at 5:29 pm. She had Amniotic Band Syndrome
which is usually not fatal, but in her case, the bands formed so early
in development (they thought the first trimester) that they interfered
with the formation of her vital organs, primarily her brain. We
received the diagnosis at 22 weeks and I went into preterm labor at 35
weeks.
1. What was it like for you and your family to learn of your baby's diagnosis?
We were devastated. We had brought our three year old along to see pictures of his sister/brother at the ultrasound where her condition was
diagnosed. I had a feeling all along that something wasn't right, but I
had the same feeling with my little boy and all was well there, so I
ignored it. It was hard because he saw our world shatter that day and
was too young to understand it. Every time we drove by the doctors
office he was very concerned that we might go in there again and he
didn't want to because it made everyone so sad. The main thing I
remember was being in a fog for a very long time. It has been over 3
years and that fog still comes back. I have learned that I have to take
it one day at a time and sometimes one moment at a time.
2. What did you do during your pregnancy to make the most of your time?
I didn't do enough during my pregnancy, that is a huge regret that I
have. The only thing I did was take a few pregnancy photos. At the
time I didn't know anyone who had gone through this and continued the
pregnancy. I felt totally lost. I tried to reach out to support groups
for parents who had lost children but my baby was still alive and we
didn't know what was going to happen so I didn't really seem to fit
anywhere. I finally sought out a counselor and that was helpful. I
also did some journaling.
Things I wish I had done: more photos
(especially the traditional ones, but with someone that new my situation
and was sensitive), videos, I didn't get my ultrasound pictures until
after she was born and had died, I wish I had fought harder for those,
but I didn't have the energy.
3. How do you celebrate your baby's life?
This is something I constantly struggle with. For her first birthday, I
finished her scrapbook album, and for the past two I have just kept to
myself mostly. This year I took my son to the bakery and we bought
cupcakes to celebrate. I have seen things done such as balloon releases
or butterfly releases, and would like to do something like that.
I
remember telling my husband that something good had to come of her life
no matter how short or I couldn't survive it. I hear so many families
say that helping others is healing. I also know that you have to be
ready and in a good place in order to be gentle with yourself and
effective at helping others. Recently I have become involved in some
local groups and provide support to families who are experiencing loss
through miscarriage, stillbirth, or infant loss. It gives me a way to
give back and also share my story.
4. What advice do you have for families facing a fatal diagnosis?
You are not alone. Unfortunately we belong to a club that no one ever
wants to join, but we have a certain bond. We are there for each other
because, even though we may not know exactly what you are going through,
we do know the road you are traveling because we have traveled it too.
We will support you every step of the way. Don't be afraid to ask for
second opinions and know all your options. I was unable to find
support groups before Lily was born, but since then I have found
organizations/websites/etc that offer support and assistance. I wish I
had found them sooner. Seek them out. Plan as much as possible in
advance. Set up photography, you can get it done at no charge. Have a
birth plan and if possible share it with the physician and nurses ahead
of time. Know what services the hospital provides. Bring special
clothes/items to the hospital. Take videos of your family with your
baby. Read him/her a story, sing them a song. Most importantly, be
gentle with yourself. Know that, while your life will never be the
same, you will make it.
*Read more of Lily's story HERE.
Showing posts with label We Asked. Show all posts
Showing posts with label We Asked. Show all posts
Tuesday, July 9, 2013
Wednesday, June 19, 2013
We asked, you answered: Sophia's Diagnosis
ATLCD asked: What was your experience of hearing the news of your baby's
diagnosis?
Shannon answered:
The first weeks of carrying Sophia were rough. So-called morning sickness was all day sickness. I had experienced the same while carrying my older two children and was able to function pretty well and continue being mom and working. I had bleeding and spotting constantly and twice so heavy that I thought I had surely miscarried. Each time I was reassured and my whole heart smiled to see that tiny beating heart on the ultrasound confirming she was still with us. My husband and two kids wanted a girl and we just referred to her as a she long before we knew the gender. When asked if I wanted a boy or girl my answer was always the same. I just want a healthy baby and to skip a NICU stay this time. We counted down the days until we had a routine anatomy ultrasound scheduled at the area perinatologist office and would learn the gender. I was about 20 weeks along and was followed by the high risk specialists just as a precaution and after having preeclampsia twice. I was comfortable with the perinatology team we would see, they had taken excellent care of us before and I had also developed a professional relationship with a few working just downstairs as a maternal/newborn RN at a large hospital. I honestly wasn't excited about the gender, I just wanted confirmation everything was okay.
December 4, 2012 we signed in for our appointment. We waited in the big waiting room what seemed like forever, there is a gorgeous view of the St Johns River that I kept focusing on, trying to calm my nerves. My name was called and vitals checked, again I heard the spiel from the nurse practitioner on preeclampsia and what to expect and such. Back to the waiting room we waited awhile longer and I splashed some water on my face in the bathroom and tried to ease my worries. It was finally my turn, I would finally see my baby to be. The ultrasound started off normally. Measurements, hearing a beautiful and strong heartbeat. I began to relax, feel like I had been so worried about nothing. She kept taking a few more measurements and looking at the baby's hands. That was what sent the overwhelming feeling that something was wrong with my baby back to me. Why would she keep looking at the hands? We learned it was a girl and my husband was over the moon. I knew my kids would be too. I was still stuck on what was wrong. She took a few more measurements, this ultrasound was now WAY over the length of what it should have been and I remember the table I was laying on getting so hard and uncomfortable, looking at my husband bursting with joy he was having a baby girl and just feeling terrified. I didn't want to ruin his beautiful moment if I was worried about nothing.
We didn't wait long after the sonogram and the Doctor came in with the sonographer to review the findings. This was typical at this office so I just laid there waiting to hear his warm familiar voice ease my fears and tell me everything was okay. Not so. He very delicately showed us the images of the cysts on her brain and the single umbilical artery , both of which I knew had to be watched but could still mean a healthy baby. And then he referred to them as soft markers and then explained some other markers she had. For what I thought? He explained separately they didn't mean much but together it could be Trisomy 18. And then that he thought it was very likely this was trisomy 18. My world stopped, my heart sank and I sobbed and sobbed. I knew exactly what that meant, there was little to no chance I would meet my baby girl alive. This man who I was looking forward to seeing had just delivered my worst fears. I knew that doctors could be wrong and miracles could happen but I knew this doctor well and trusted he would not suggest such a diagnosis unless all things were pointing that way. He used the words "incompatible with life" when describing my baby girl who was clearly alive and moving, heart beating right in front of us on the screen. We called a few family members and choked out the words to tell them what was going on. Then I called my job which was in the same building and let them know I wouldn't be in for a few days. I could barely speak the words Trisomy 18. At that point I realized it was December 4, the day my sweet grandmother had passed onto heaven just a few years before. She was the most kind and loving woman to every person she came across and I longed to hear her sweet voice or be wrapped in her strong hug again. She would know a way to bring us comfort in this. I insisted on an amnio that day so that we could have a confirmation of this diagnosis and prepare ourselves for what this would bring. The office accommodated our wishes and after lunch I was whisked right into a room, no waiting or sitting staring at the river this time... We at no point considered ending our baby girl's life but did want to be prepared for decision making. I cried thru the entire amnio which hurt a great deal more than I expected and it was after that, that I think my husband grasped the severity of the condition we were dealing with.
We went home, crawled into bed and cried together mourning the loss of a healthy baby girl. That night, desire to have a healthy baby that didn't have a NICU stay changed into just wanting to have the opportunity to meet my baby girl alive. That was all I wanted. Of course I would be over the moon if she was one of the very few who live with T18, or was well enough to be assisted in NICU. The overwhelming odds that she would be gone before we would meet was so hard to take in.
T18 was confirmed and I went on to feel chosen to be Sophia's mother, called to love her and give her life meaning and respect as God had planned, however long or short that was. I will continue to do so all the rest of my days.
Sophia Grace Rector, born into heaven Feb 19 2013.
Shannon answered:
The first weeks of carrying Sophia were rough. So-called morning sickness was all day sickness. I had experienced the same while carrying my older two children and was able to function pretty well and continue being mom and working. I had bleeding and spotting constantly and twice so heavy that I thought I had surely miscarried. Each time I was reassured and my whole heart smiled to see that tiny beating heart on the ultrasound confirming she was still with us. My husband and two kids wanted a girl and we just referred to her as a she long before we knew the gender. When asked if I wanted a boy or girl my answer was always the same. I just want a healthy baby and to skip a NICU stay this time. We counted down the days until we had a routine anatomy ultrasound scheduled at the area perinatologist office and would learn the gender. I was about 20 weeks along and was followed by the high risk specialists just as a precaution and after having preeclampsia twice. I was comfortable with the perinatology team we would see, they had taken excellent care of us before and I had also developed a professional relationship with a few working just downstairs as a maternal/newborn RN at a large hospital. I honestly wasn't excited about the gender, I just wanted confirmation everything was okay.
December 4, 2012 we signed in for our appointment. We waited in the big waiting room what seemed like forever, there is a gorgeous view of the St Johns River that I kept focusing on, trying to calm my nerves. My name was called and vitals checked, again I heard the spiel from the nurse practitioner on preeclampsia and what to expect and such. Back to the waiting room we waited awhile longer and I splashed some water on my face in the bathroom and tried to ease my worries. It was finally my turn, I would finally see my baby to be. The ultrasound started off normally. Measurements, hearing a beautiful and strong heartbeat. I began to relax, feel like I had been so worried about nothing. She kept taking a few more measurements and looking at the baby's hands. That was what sent the overwhelming feeling that something was wrong with my baby back to me. Why would she keep looking at the hands? We learned it was a girl and my husband was over the moon. I knew my kids would be too. I was still stuck on what was wrong. She took a few more measurements, this ultrasound was now WAY over the length of what it should have been and I remember the table I was laying on getting so hard and uncomfortable, looking at my husband bursting with joy he was having a baby girl and just feeling terrified. I didn't want to ruin his beautiful moment if I was worried about nothing.
We didn't wait long after the sonogram and the Doctor came in with the sonographer to review the findings. This was typical at this office so I just laid there waiting to hear his warm familiar voice ease my fears and tell me everything was okay. Not so. He very delicately showed us the images of the cysts on her brain and the single umbilical artery , both of which I knew had to be watched but could still mean a healthy baby. And then he referred to them as soft markers and then explained some other markers she had. For what I thought? He explained separately they didn't mean much but together it could be Trisomy 18. And then that he thought it was very likely this was trisomy 18. My world stopped, my heart sank and I sobbed and sobbed. I knew exactly what that meant, there was little to no chance I would meet my baby girl alive. This man who I was looking forward to seeing had just delivered my worst fears. I knew that doctors could be wrong and miracles could happen but I knew this doctor well and trusted he would not suggest such a diagnosis unless all things were pointing that way. He used the words "incompatible with life" when describing my baby girl who was clearly alive and moving, heart beating right in front of us on the screen. We called a few family members and choked out the words to tell them what was going on. Then I called my job which was in the same building and let them know I wouldn't be in for a few days. I could barely speak the words Trisomy 18. At that point I realized it was December 4, the day my sweet grandmother had passed onto heaven just a few years before. She was the most kind and loving woman to every person she came across and I longed to hear her sweet voice or be wrapped in her strong hug again. She would know a way to bring us comfort in this. I insisted on an amnio that day so that we could have a confirmation of this diagnosis and prepare ourselves for what this would bring. The office accommodated our wishes and after lunch I was whisked right into a room, no waiting or sitting staring at the river this time... We at no point considered ending our baby girl's life but did want to be prepared for decision making. I cried thru the entire amnio which hurt a great deal more than I expected and it was after that, that I think my husband grasped the severity of the condition we were dealing with.
We went home, crawled into bed and cried together mourning the loss of a healthy baby girl. That night, desire to have a healthy baby that didn't have a NICU stay changed into just wanting to have the opportunity to meet my baby girl alive. That was all I wanted. Of course I would be over the moon if she was one of the very few who live with T18, or was well enough to be assisted in NICU. The overwhelming odds that she would be gone before we would meet was so hard to take in.
T18 was confirmed and I went on to feel chosen to be Sophia's mother, called to love her and give her life meaning and respect as God had planned, however long or short that was. I will continue to do so all the rest of my days.
Sophia Grace Rector, born into heaven Feb 19 2013.
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