Our daughter, Eleanor, was diagnosed prenatally with Hydrocephalus and Alobar Holoprosencephaly (HPE) at 31 and 32 weeks. Please see the Journal entry, More on Eleanor's Condition, for more information (it became a tad lengthy).
Support Eleanor:
Helpful Sites for Perinatal Support:
String of PearlsMolly BearM.E.N.D.Another Family's Documentary on Infant Loss- Choosing Thomas
April 4, 2018
I had no idea how hard Easter would be. I have thought about Christmas, Thanksgiving, 4th of July... but didn't think about how hard Easter would be without our baby girl. We got through St. Patty's Day alright, I guess it is the family holidays that are rough. My little angel makes a very cute bunny. I miss her so, and really want to figure out a way to honor her memory more, just have to figure out the how...
March 31, 2018
Today marks the last day of Holoprosencephaly (HPE) Awareness week (March 25-31). HPE is the congenital disorder that took our daughter Eleanor from us in January. HPE comes in different severities, and Eleanor had the most sereve version of HPE, alobar. It is hard for me to trust statistics anymore since statistically my baby should not have made it to birth, let alone live 36 days. Sometimes the whole event seems impossible, like a horrible nightmare, but I have the scars and stretch marks to remind me it happened. The symptoms and conditions that children with HPE vary, if you think about everything your brain does, it makes sense that it is difficult to predict the issues these children have. This disorder causes the brain to not form properly, meaning that every child's brain forms differently and therefore affects their conditions differently. For Eleanor, she could not hear, smell, regulate her temperature, and at the end, breath. She did not have a sleep/awake pattern, meaning she was mostly awake, her brain didn't tell her body to sleep. We don't know to what extent she could see, she was a baby after all, and maybe if she had lived longer we would have found that she could see, but we can only guess to what extent. Her nasal passage went to her mouth, and she did not have typical cartilage that formed her nose. She had a beautiful cleft lip, I love her mouth. Eleanor had issues with her body tone, and had frequent seizures. Your brain manages everything in your body.
Even though Eleanor did not survive, there are other children out there with this disorder who are surviving. The issues and severity vary, but can include issues with motor skills, dexterity, eating, breathing, sleeping, seizures, temperature regulation, nerve sensitivity, microcephaly, hydrocephalus, talking, blindness, lack of sense of smell, and hearing. Every child has their own story and you cannot rely too heavily on the diagnosis,
Eleanor was and is truly loved. I think about her and miss her all the time. I hate that I am a mother without a living child, but at times, I am glad she made me a mother. I struggled with infertility prior to getting pregnant with Eleanor, and lately it seems like I still am. I am a woman who has wanted a child for years and is still waiting to take care of a child and be recognized as a mother. I feel like being a mother is my new identity, but others don't see me as a mother, because my child is no longer with me. I realize life is moving on for others, but I continue to feel at a standstill, how can I go on without my child? I am just like every other new mom, she is my entire life, and I want to share her with everyone. She is the best thing that has ever come into my life, the most impactful, but her diagnosis and death are the most traumatic events I have ever been through, unimaginable. I have always considered myself a relatively happy person, I didn't know I could be so sad, or feel so alone. I wish I had my 15 week old baby at home, safe in my arms. I wish no one ever lost any child, but unfortunately it occurs more often than most people let on.
March 19, 2018
Our most loving and gracious Father, we come to you today broken and
hurting. We are here to commemorate the all-to-short life of our
precious daughter, granddaughter, niece and cousin, Eleanor. Lord,
today is a time to mourn. We miss admiring Eleanor’s dainty hands and
tiny fingers, we miss seeing her signal us with her cute little tongue that
she is hungry, and we long to cradle her close to us again. Today is also
a day to weep. Dreams we imagined for her will go unrealized. Hopes
we had for her will go unfulfilled. Lord, our hearts are breaking. We cry
out to you as the psalmist did in Psalm 25, “Turn to me and be gracious
to me, for I am lonely and afflicted. The troubles of my heart have
multiplied; free me from my anguish.”
And yet, of God, we know that you are gracious. You have brought
countless people our way to make our burden lighter. We have known
the caring and concern of doctors and nurses, both in the hospital and
from hospice. We have become familiar with ministries such as String
of Pearls and Fat Baby Photography who have heartened us with their selfless
generosity. We have been comforted by many, some we do not even
know, who have fed us and provided for us. And we have been
consoled by family and friends who have loved us, cried with us and
embraced us.
Finally, you have welcomed our little Eleanor into Heaven’s gates and
made her whole. She will run through the fields of Heaven and be
serenated by the songs of angels. Lord, we relish the day we will be
united with her again.
Heavenly father, today is a day to mourn and a day to weep, but it is
also a day to love. O God, we love you first for your tender mercies, and
then, we love each other. Father, comfort us. Let us feel your loving
arms around us. We pray all this in the mighty name of our savior, Jesus Christ.
Ecclesiastes 3:1-8
March 19, 2018
I always anticipated my children becoming my world once I became a mother. However, I never anticipated my world crashing down around me.
Missing you baby girl, hard to believe it has been two months without you. It seems like just yesterday I was holding you, taking care of you. I love you more than tongue can tell.
March 3, 2018
Eleanor has been gone more days than she was with us now. It is hard to believe, it still seems so fresh. I love looking at her pictures and videos, I think about her all the time.
A wonderful friend sent us a wind chime to hang in Eleanor's memory and every time the wind blows I think of her and it makes me smile. A lot of things make me happy and sad at the same time, but hearing the wind chime always brings me comfort, like Eleanor saying hi.
Grandpa- Eleanor's memorial:
I always liked funeral invitations that were described as a “Celebration of Life”, so
I’ll skip my sadness and comment on what a good baby she was.
She made her parents very happy. They wanted a baby and now they had a fine
baby girl. In spite of her problems, in most ways she was just like any other
newborn. She ate, pooped, and liked to take a bath. She made spontaneous
faces, yawned, hiccuped and burped just as they all do.
My father as a child once cut a tablecloth in half. This horrified me because that
had to be deliberate, and my dad just wouldn’t have done this. But the story was
told to me directly by my grandparents, and they wouldn't lie about a thing like
that. Ellie never cut a tablecloth in half. She was a good baby.
Ellie never startled a driver on the road by blowing a horn close by. I know kid
that did that once, but it wasn't Ellie.
Every child I've ever known has left toys on the floor and from time to time you
would step on one or stub your toe badly. You don't love the kids any less, but I'll
say this: Ellie never left toys strewn all around the floor. Thanks for that Ellie.
I have a grandson who likes to play hide and go seek but forgets to announce
“game on” and this causes us great concern when we discover he is gone. Ellie
never did this. She was a good baby.
Some kids have been known to leave the house without permission at night,
sometimes through a window. You Know Who You Are. Ellie never did this. Ellie
was a good baby.
She was never heard to gossip, or point out the faults of others.
Ellie had a pretty large wardrobe for such a small child, but I'll say this: She
never wasted a dime on purses and shoes. Ellie was a good baby, and thrifty
too.
It's a funny thing with lists, you start out to make the point that Ellie was a good
baby and by the time you’re done, you have to revise your main point.
Ellie may have been the perfect baby.
February 20, 2018
I found out recently that many holoprosencephaly children don't have sleep/wake cycles, from other mom's with HPE kids. Many of these kids can go days without sleeping, or have 15 or 30 minutes of sleep a day, basically, they are awake a lot more than they sleep. Parents said this was extremely hard when their children were newborns.
I was up with Eleanor the day after she was born, 12/14/17, crying to the NICU nurse because my baby had barely slept since she had been born, and by barely I mean maybe 30-60 minutes total in a day and a half. I was holding Eleanor rocking her back and forth, crying, telling the nurse I knew something was wrong. She tried to calm me and told me it is very hard having a newborn and that she would stay up and rock Eleanor so we could get some sleep, but I didn't want to give Eleanor to anyone else. I wanted her to stay with her mommy and daddy, because we didn't know how much time we would have with her. We wanted to give her all of our extra love.
I told the nurse that I knew newborns were a lot of work, but I guess I never knew how difficult it was the first few days of their lives. Turns out, this was due to Eleanor's condition and not just how newborns are... Since all the literature and studies on HPE basically point out how imminent death is, nothing prepared me for taking care of Eleanor and her special needs. David and I would try to all sleep together in shifts, but since Eleanor stayed awake so much, she was always making cute little noises, and we wanted to give her the attention she deserved, lots of extra love. Most days and nights David and I worked in shifts, sleeping a few hours here and there. My Dad thought we worked in shifts to make sure she was breathing, but since she was awake so much we just wanted her to feel loved as much as possible, didn't want to ignore her while we slept.
Eleanor loved being warm and hated being cold. Since she couldn't regulate her temperature, we tried a million different ways to keep her warm. In the hospital it was easy, we swaddled her and placed her under a heat lamps when she wasn't snuggled with one of us. While in the hospital we always changed her diaper under a heat lamp (once we realized after the first day that she hated being cold), I loved knowing she was staying comfy and warm while we changed her. It was a huge shock to take her home and have to figure out how to keep her warm.
We took her temperature every two hours, many times it would be 95 or 94 degrees, her normal warm temperature was 97.2 from taking her temperature on her forehead. When it got below 97 we would work to warm her. She only had a high temperature once, in the hospital, under the warmer, I believe it was 99 something, she didn't like that either, but she only got warm that once.
First we tried to layer blankets as much as possible. I cried multiple times because we only had one pair of socks that fit her (it is so hard to find preemie clothes in stores), I was so glad when Amazon delivered her 6 pairs of preemie socks. The nurse had told me to layer socks to help keep her warm, but I only had one pair!!! We tried warm blankets from the dryer (those only last so long), and a heating pad in her bassinet. None of these worked!
Turns out the only way to really keep her warm was body heat, holding her constantly, snuggling with her frequently, and laying in bed with her wrapped in our arms. We realized this after talking to an HPE Dad. He said the only way to keep his daughter warm was to co-sleep, so we did. After a few weeks we found that she stayed warmer when she had no onesie on, just a diaper, hat, socks, flannel blanket, and warm blanket. She basically stayed in someones arms the entire last two weeks she was with us, getting extra love.
I loved caring for her, it was difficult, but it was my world. I love her so much and wish I could hold on her giving her extra kisses, and snuggles. I have all of this extra love, and no where for it to go. I have such a strong desire to nurture my baby and love on her, but she isn't here for me to love on and care for. My heart aches.
I had 6 people reach out today and try to help me. At least half of them didn't know I have been grieving really hard this last week. I know I am blessed to have so many caring family and friends, but sometimes you just need to be alone with your feelings and the memory of what was. I love you baby girl, always and forever.
February 19, 2018
It has been one month since Eleanor passed away and gained her wings. I miss her so much, I have been having a really difficult time lately. I miss holding her, her smell, her fingers, toes, nose, lips, hair, and that tongue! I miss everything about her, and I miss feeling like a mommy, taking care of her. I loved taking care of her. I hope to find a new 'normal' at some point, but I am not there.
February 15, 2018
I was sitting at lunch with my sister the other day and she had a memoent where she broke down and told me she feels like a mother, she has the stretch marks, c-section scar... all the physical reminders, but no baby. So I am reading a poem today entitled: What Makes a Mother
I though of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.
A Mother has a baby
This we know is true
But God, can you be a Mother
When your baby's not with you?
Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.
Some I send for a lifetime
And others for a day.
And some I send to fill the womb
But there's no need to stay.
I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say
We go to earth and learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day
When she goes to sleep
On her pillow is where I lay.
I stroke her hair and kiss her cheek
And whisper in her ear
"Mommy don't be sad today
I'm your baby and I'm here."
So you see my dear sweet one
Your children are OK
Your babies are here in My home
And this is where they'll stay.
They'll wait for you with me
Until your lesson is through
And on the day that you come home
They'll be at the gates for you.
So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.
February 13, 2018
To help us get through the eulogy to honor Eleanor, David and I took turns speaking and the phrasing changes depending on who is speaking.
Mom: At many funerals the eulogy is a recounting of stories and memories drawn from a long life of experiences, and a lifetime of accomplishments. But the reality is Eleanor was with us for only 36 days. From the time of her conception to her passing was only 42 weeks. It may seem like that’s not enough time to make many memories or have many accomplishments, but she impressed us still.
Dad: Some of you may know that Susan and I had been hoping to get pregnant for over a year. One weekend morning, Susan had woken before me, gone into the bathroom for a bit, and shortly thereafter literally jumped back into bed. Susan seemed way too enthusiastic to be going back to bed as she clung to me like a baby monkey to its mother’s back. Naturally, I tried to ignore this and went back to sleep. A short while later, Susan was hollering excitedly at me from the kitchen that breakfast was ready and I needed to hustle up and make it to the table. When I sat down there was a plate of eggs with something written out in sautéed spinach on top. “Diego?” I asked, puzzled. And then I realized it said “prego” as in pregnant. Susan and I laughed and embraced each other, and that morning I learned two things; I was going to be a Dad and spelling words with spinach is hard.
Mom: As you now know, we did not decide to name our daughter Diego. When we chose the name Eleanor we assumed she would one day tell us which of the many nicknames she wanted to go by much like her cousin Ryan who decided he wanted to be called Joseph for about a week. One of her Aunts is fond of Ella, her Grandpa likes Ellie, her cousin’s fifth grade class decided “Stella Ella” was fitting, and we even have some creative friends who call her “Lil’ Nor.” I believe this is just a testament to how many people loved and cared for her.
Dad: At 12:13 in the afternoon, on December 13th, or 12/13, we checked into the UT Southwestern Medical Center because our little baby Eleanor was on her way, and she was coming early. Susan and I had received her diagnosis of alobar holoprosencephaly a few weeks prior and were anxious and afraid for her birth. I believe this was one of the first blessings she gave us. We had her c-section originally scheduled for 1 week later and the
worry and stress of it was mounting. The c-section went better than we had expected, and we smiled and cried as our baby girl opened her eyes and continued to breathe.
Mom: Over the next few days, Eleanor impressed us with her ability to see. Many children born with HPE are blind. We are not sure how well she could see, but she would smoosh her eyes shut if you suddenly turned on the light in a dark room. One of our favorite memories is of the three of us in bed, David on Eleanor’s right and me on her left. We kissed her goodnight as we did many nights. I kissed her left cheek, David kissed her right cheek, and then she looked at me, as if to say “kisses mommy?” I kissed her cheek again, and then she looked to daddy, “kisses?” David and I went back and forth kissing her for at least 6 rounds with her looking at us for kisses, until finally, she shut her eyes, as if to say “that’s enough, goodnight mommy and daddy!”
Dad: What impressed us most was Eleanor’s ability to eat from a bottle. This may not
sound like much, but for many children with HPE, this is not an option. We cherish every moment we were able to provide her with nourishment and are grateful for the opportunity for so many bonding moments.
Mom: She also impressed us with her ability to instantly let us know if she needed a diaper change. Daddy likes to think she was just very lady-like and didn’t like a dirty tush. She had such a precious tiny tush, it fit in the palm of your hand. Eleanor couldn’t tell us she loved us with words, but we felt like she showed us with her cute little tongue. Very early we discovered she would stick her tongue out at people she liked and we decided this was how she said, “I love you.” We would come to find out she was a very loving baby, and would give her love freely and often. I miss that sweet tongue and all of the “I love you’s” that came with it.
Dad: Eleanor’s life was filled with loving family and friends. We are grateful that we were able to be by her side for her entire life, and will always treasure that time. Susan and Eleanor were rarely ever apart. In the hospital, Susan only spent 15 minutes away from our little girl while Eleanor and I were down the hall getting her shots. Besides that, only showers and sleep kept her from our daughter. To stay warm, Eleanor would even spend her nights cuddled in bed with us, so we were never truly apart.
Mom: Eleanor attended many social events, a Christmas Eve party, 2 family Christmas gatherings, 3 birthdays parties (including her own 1-month birthday), and one New Year’s Eve
celebration in the comfort of her own home. She had a beautiful newborn photo session where she was the star, two family walks with her parents, and happy birthday sung to her almost daily at 3:41pm. Over 36 days she met all of our immediate family, including her grandparents, uncles, aunts, and her cousins, numerous family friends, and a collection of very caring and helpful medical professionals. It was a brief life, but it was a full life. In her life we estimate that she received over 4,000 kisses, the majority from the two of us, and
was held by over 45 family members, friends, and caregivers.
Dad: The loss of Eleanor, I have realized is not a tragic one, but instead a profound loss. There have been many good things that have come as a result of her time here with us. We have met some amazing people in this journey, made new friends, and become closer to our wonderful friends and family.
Mom: We would like for you all to know that we will be submitting Eleanor’s medical information to the Scottish Rite HPE research center, in the hopes that more can be learned about this rare disorder. We have donated expressed milk to help other babies and we are
exploring other options for doing more good in her name.
Dad: My mother and I had a conversation about how as a parent you wish you could take any and all pain away from your child, and how she wishes she could take mine and Susan’s pain away. This was my response:
“I know you wish you could take the pain, but the pain is okay. I like to think it is just our love for Eleanor searching for a new outlet now that she has passed on. It helps me remember her throughout each day, and keeps me feeling close to her. I think some of the pain will always remain, but the sharpness of it will fade and the wound that remains will eventually scab over and heal. The scar that is left will be strong, but will also be an ever-present reminder of the
impact she had on us in her short time on this Earth.” Susan and I feel it is important for you to know that we don’t want to “move on.” Instead, we want to “move forward.”
We are the same people we were before, but with a new appreciation for life and the loved ones that make that life so special. I think the short time we’ve had with our daughter made us cherish all of the little moments and made us better parents to Eleanor and to any children we may have in the future.
Mom: Eleanor, I love you more than tongue can tell. If I had a flower for every time I thought of you… I could walk through my garden forever.
Dad: God bless you, and thank you all so much for helping us in our hour of greatest need.
February 12, 2018
Aunt Gigi posted this beautiful note on the GoFundMe account and Facebook. Gina (aka Aunt Gigi) has been such an amazing comfort to me in these last few months. Our bond is stronger for going through this together and I could not be more thankful to her.- Susan
Yesterday we laid Eleanor to rest. It was a surreal moment, after all the ups and downs the last few months. A man came up to me that was from the cemetery and said “well at least this gives you and opportunity to say your final goodbyes.” I pondered on that a moment and thought, in a way yes, memorials are a way to have formal closure and to say farewell to a loved one. But in reality, for those that are blessed with faith, you will always have the opportunity to still be connected to the one you lost. I will continue to “talk” to Eleanor through prayer and that brings me much comfort knowing this isn’t the final goodbye. If it was, I think my heart would be eternally broken. In the past few months, faith as stepped in as a major support system for our family. It has held our hand and guided us through the worst of times. Without faith and community, we would still be lost.
The memorial was beautiful. Susan’s Dad, Fred, spoke first, with a personalized tribute to Eleanor. Susan’s sister, Julia, then offered a comforting poem on motherhood and reminded us that Eleanor is now with God in his house, at peace and waiting to be reunited with her parents. Carolyn, David’s mother, read a verse from the Bible, that put in perspective that there is a time for everything and even the best of things, unfortunately, don’t last forever. Susan and David wrote a loving eulogy and executed it bravely & with grace, as they spoke about the wonderful memories with their daughter.
Memorials, specifically for children, are always heartbreaking. No one walks away being healed by having the formality of a ceremony. There’s a sense of closure, but not of finality. The day did give everyone an opportunity to have a physical marker that Eleanor is truly at peace, pain free and happily smiling down on us all. As with most major life changes, it was a chance for family & friends, we see far too little, to come together and show David and Susan how much they care and that they are always with them, even if the visits are spread far apart. Over 80 people attended this tiny one’s memorial! Even after death, our little Eleanor is teaching us the importance of connection and spending quality time with one another. A parting gift she left us, was reuniting many that we haven’t seen in years and that made the day much more bearable.
As we say goodbye to this precious baby, I will ask everyone one more time, as I feel it’s my job to help provide for and protect my brother and sister-in-law after all they have been through, please don’t forget them. Grief is not a one day, timed event. Funerals do not mean all the emotion runs dry and life picks up where it left off, before the tragedy struck. Everyone grieves differently, at their own pace. In the coming weeks, months and even years, please touch base with David and Susan. It’s okay to say Eleanor’s name and ask how they are doing with the loss. Please check in on them and make sure they know they have all the support in the world. Mark your calendars for 12/13 (Eleanor’s birthday) and 1/19 (The day she left us) and know that those days will never be forgotten & they will be difficult for her parents. Reach out to them in the weeks leading to those special days and give them all the love you can offer.
I am sure you will see much more from the Aylor’s in the future on raising awareness for Alobar Holoprosencephaly, infant loss and grief support. Stay tuned to Susan’s blog for updates.Thank you to every single one of you that read, shared, donated, wrote cards, sent texts, dropped off meals, made gifts, prayed and supported all of us and David and Susan. A special thanks to Susan’s mother Marci, her sister Julia, her sister in law, Dani, her brother, Bob, and her father, Fred, for being a constant source of comfort and a stream of love during this time.
Also thank you to David’s family, his mother, Carolyn, his dad, Steve, his brother and sister in law, Chris & Jessica and his brother, Bryan for all the love , patience and kindness they offered through every step of the diagnosis, birth and memorial. A huge thank you to all the Dinser’s, Aylor’s and James’ side of the family that made the trip for the memorial.Thank you again for all that you have given. Without each of you, I feel we would of drifted out to sea and been left stranded, floating aimlessly in pain, for quite some time. You each showed us the light and brought us home, connected forever through one beautiful little angel, our baby Eleanor.Love to you all,
Aunt Gigi (Gina Aylor)
February 2, 2018
Eleanor Katherine Aylor was welcomed into this world by her loving parents on December 13, 2017, and granted her angel wings on January 19, 2018. Her final days were spent surrounded by the love of family and friends who will miss her greatly.
Although she was so tiny and frail, she was a fighter and reminded us of the preciousness of life. She loved warm baths and being held by her parents. Eleanor showed her love to others by sticking out her cute, tiny tongue. Her time with us was too short but impactful and she was comforted by the loving arms of many.
Eleanor is survived by her loving parents, David and Susan Aylor of Arlington TX; paternal grandparents Steven and Carolyn Aylor of Longview TX; maternal grandparents Frederick and Marci Dinser of Colleyville TX; aunts Danielle, Gina, Jessica, and Julia; uncles Bob, Bryan, and Chris; cousins Adam, Logan, Mackenzie, and Ryan; and many other family members and friends.
The family would like to thank the staff at UT Southwestern 's Clements Hospital NICU and Community Hospice of Texas for taking such great care of Eleanor.
Memorial services will be held Saturday, February 10, 2018, at 2:00 p.m. at Bear Creek Cemetery, 100 Bear Creek Cmtry Rd, Euless, TX 76039.
In lieu of flowers, donations in Eleanor's memory may be made to:
Community Hospice of Texas at https://www.chot.org/ or String of Pearls at http://www.stringofpearlsonline.org/
January 27
Thank you! Thank you to everyone for the support, the prayers, contributions to the GoFundMe account, meals, flowers/plants, and loving messages. The overwhelming support we have received throughout this journey has been heart-warming. Anytime anyone says her name it brings us joy that you remember her and can remind us of Eleanor's huge impact. The 36 days seem longer to me, but I am sure that was due to being awake way too many hours on most days. We appreciate your support and kindness through our grief. We should have service details within the next week, and I will share them at that time for those that would like to join us in celebrating Eleanor's life.
Grief is not a disease, it is not an illness, it is not depression. It is in fact an expression of love. Grief can only be a disease if love is. - Dr. Joanne Cacciatore
January 23
David wrote this to his mother earlier today, in regards to her concern for his pain.
"I know you wish you could take the pain, but the pain is okay. I like to think it is just our love for Eleanor searching for a new outlet now that she has passed on. It helps me remember her throughout each day, and keeps me feeling close to her. I think some of the pain will always remain, but the sharpness of it will fade and the wound that remains will eventually scab over and heal. The scar that is left will be strong, but will also be an ever-present reminder of the impact she had on us in her short time on this earth." - David
When he read this to me I of course cried and asked if we could add it to the blog, it is so beautiful and true. Right now we think about our sweet girl, and reminisce on her life and all the great memories we have of her. Eleanor may have only lived 36 days, but they were 36 days together as a family of three. Since we knew her life would be short, we were able to truly treasure the time we had with her. From that thought, I know I will treasure my time with my loved ones more. If you see us cry, don't worry, it is just us being close to our little angel.
January 21
Our precious baby girl passed away Friday, January 19, 2018, after 36 days here on earth. David told me yesterday that he feels like God let us borrow her from heaven to make us parents, a child on loan.
I want nothing but the best for her, and at the end, what was best was for her to be with her heavenly father, and leave this earth. While this may be the best thing for her I selfishly miss her terribly. I do feel blessed to be a mother, it is something I have wanted for as long as I can remember, but my arms are empty, and they ache to hold Eleanor again.
My husband, David, is the best father ever! (I realize I am biased) He took such good care of Eleanor. With me recovering from surgery, and pumping to provide breastmilk, he had so much bonding time with Eleanor, maybe more than me. I realize that is not the social norm here in the U.S., but it is our reality. He gave her all of her firsts, first bath, diaper change, and feeding. He must have fed her more bottles because the majority of her feedings involved me pumping while David gave her a bottle. He was a diaper changing champ. There was no option except for him to stay home with us this last month and soak up as much time with Eleanor as possible, and help support me as I recover from surgery. People commonly asked when he was returning to work, this question always infuriated me, we knew Eleanor's life would be short (even though we couldn't really estimate), and everyone seemed so focused on David working. He ended up taking 5 weeks off, this never seemed unreasonable to me. I feel that if he had missed out on any of those 36 days, we might both regret it. Weekends are not enough time with your child when you only have 36 days with them.
We both went through the 36 days with her trying to guarantee that we wouldn't have any regrets. When I look through my pictures of her, I wish I had taken more videos, but it was also such a busy time and huge adjustment. We have at least 4 great videos of her and hundreds of pictures.
We always said Eleanor got so many kisses, well over a hundred a day. David says his lips got chapped from kissing Eleanor so much, lol. I figure in her lifetime she received well over 4,000 kisses, the number is probably much larger. We caressed her cheeks all the time, they were the cutest! Oh, and her tongue, it was so precious, she would stick it out at us, we decided this meant, "I love you!" She was very generous with her love.
I am now recovering from child birth and surgery without a child. As my body heals my shape is slowly coming back, but right now I still look 3 or 4 months pregnant, and I hope no one ever makes a comment about me looking pregnant, because I know I will cry. Not because my body hasn't bounced back, but because I have no baby to signify I am not pregnant, but recovering from child birth.
If you interact with my husband, please know that just because his emotions don't show on his sleeve like mine, he is still very much grieving the loss of his child, his daughter, Eleanor. They were so close and I will be forever grateful for their love and bond.
Eleanor will always be our daughter, our first born, and we will keep her in our hearts forever. One day we will be reunited in heaven sweet Eleanor, love you!
January 16
The weekend was good, spending time with friends and family, sharing Eleanor with everyone, watching everyone love on her. Today has been a rough day though, she is peaceful, but we have to check her chest to see if she is breathing, it isn't obvious when you look at her if she is still with us. I have been crying the majority of the day and again have a horrible headache. I wish I could soak in every moment, but emotions sometimes get in the way.
Daddy had to spend hours today working on leave paperwork, it frustrates me that this is a necessity while we are trying to get every moment possible with our daughter.
We did fit in a nice warm bath for Eleanor and dressed her in a cute outfit from Uncle B and Aunt Gigi, that was the highlight of my day.
January 14
Yesterday we celebrated Eleanor's one month birthday with the Aylor and Dinser families, it was great to surround her with family and love.
January 14
Our journey has been unimaginably difficult. I say unimaginably because in our wildest dreams David and I never thought we would have a child with a congenital disorder without any cure, a terminally ill child, it is/was unimaginable. However, we have been amazed by the generosity and kindness of others. Not just our family and friends, but people that otherwise are strangers to us, friends of friends of friends.... people near and far who care for our family of three and want to help make our lives easier, ease our pain, and support us through our journey. We are forever changed and our hearts are open to everyone.,
Before I was released from the hospital to go home with Eleanor, the nurse gave me a brochure on donating milk after the loss of a child, I told David that if I could produce enough breastmilk, I wanted to donate. It soon became apparent that I had more than enough milk for Eleanor, around the start of the new year, I reached out to the milk bank and was told due to my high blood pressure medication, I could not donate, and needed to wait until I was off the medication. I talked to my doctor about it, but she said my bp still wasn't where it should be after delivery/surgery, and we would discuss taking me off the medication again at my 6 week pp appointment.
I was discouraged, I had so much to give and wanted to give to those in need. Eleanor received donor milk to supplement my colostrum during her first two days in the hospital due to her birth weight, I thought it was so great that women were giving for my little girl to grow stronger, and I wanted to do the same. After a few days of dumping my milk after pumping (I had over 200 oz stored and Eleanor was eating just over 3 oz a day), I tried again to reach out to others to see if there was another way to help. A lady on my Mom Facebook group suggested a Texas breastmilk donation group, also on Facebook. Fortunately, through that group I was able to find mommies in need of breastmilk, aware of my medications, and donate to them. The milk banks have to hold the breastmilk to the highest standards so that they can reassure new mommies that it is 100% safe for baby. Through private donation, mommies can decide if a medication is okay for breastmilk, discuss with their pediatrician, and make an informed decision.
I am happy to say that I have already made my first donation and plan on continuing to donate my breastmilk to help others. At some point I hope to be able to be off medication and to donate to the milk bank so that my milk can go to tiny babies in need at the hospital, but until then, I will help one family at a time, privately.
January 13
Today is Eleanor's one month birthday! We didn't think we would make it this far, but are excited to celebrate a milestone with our little girl. We are throwing her a tiny birthday party, having the family over for some cake and to sing happy birthday at 3:41pm, when Eleanor turns one month old, I am looking forward to it.
I don't know if I can explain just how amazing hospice has been, but if you ever find yourself in a situation with a family member who is dying, or has a terminal disorder, hospice can be a great resource. The people that we have on Eleanor's hospice team are amazing! The team consists of a pediatric hospice nurse, child life specialist, social worker, chaplain, and doctor. The fact that Eleanor's nurse is a pediatric hospice nurse is key, because pediatric patients have different needs and the needs of their parents are different. Our nurse is amazing and has over 10 years of specialized experience, she feels like part of the family and treats Eleanor like family. Nurses are pretty amazing people, we know, we have 2 in the family. Eleanor has a pediatrician and neurosurgeon, but they are not equipped to assist through the death process like hospice. Her neurosurgeon is pretty great though, I feel like doctors, nurses, and support staff that work in pediatrics have special hearts, that doesn't sound like I intended... they are kind, thoughtful, purposeful, I hope that helps explain it more. They treat Eleanor like our daughter, not like a terminally ill child.
I have learned so much about hospice, but one important fact is that they are there to support the family through the death of the patient. They will help with whatever they can, and will help you make the most of the time you have with your loved one. We have had to venture out in the cold for multiple doctors visits and one hospital admittance (for me, not Eleanor), and it is so much easier having hospice come to you. It shocked some people that hospice comes to our home on a weekly basis, but it makes sense when you think of how hospice works for patients of different ages, transportation is hard!
Hospice is one of the best decisions we have made for Eleanor's care and we are very thankful for their support and advice. I hope to post birthday pictures later today.
January 12
A part of me wanted to entitle this entry "The Hardest Thing Ever," but I am worried that is still to come. David and I have learned so much in the last 2 months, about terminal diagnosis, HPE, Hydrocephalus, genetics, grief, loss, planning for a loss, leave policies at work, and just about ourselves and our emotions. I have felt the need to research since day 1 and continue to do so. I am still spending time preparing by reading "A Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be Brief." I have two copies, one I purchased off of Amazon in the very beginning and one I was gifted right before her birth. I read it for weeks of my pregnancy, but was unable to finish prior to Eleanor's birth and continue to read it now as I pump. If you or anyone you know is in a similar situation, I highly recommend this book. If you are anything like me, you will cry through the entire thing, but it has increased my awareness and helped prepare me for Eleanor's birth, coming home, medical decisions, and her death.
Eleanor is dying. I am unsure of the exact moment the death process started, but I would say maybe Tuesday, January 2, 2018. I cried a lot on New Year's Day, I think I may have seen a change but was unable to pinpoint it. Eleanor's appetite continues to decrease, and we noticed an increase in seizures and pain. Until this week, David and I had never heard Eleanor scream, poor thing, it was terrifying. Since Eleanor is deaf, she does not cry often, her cues of being unhappy typically are visual cues where she scrunches her face, or opens her mouth like a cry without sound. She has cried on occasion, but it is typically one brief cry. On Wednesday, January 10, we became more aggressive with treating her seizures and managing her pain. Medication is a blessing because it is helping her stay relaxed and pain free, but it is very difficult on David and I. Of course, foremost we want Eleanor to be pain free, but seeing her so relaxed is not a normal state for a baby her age, and definitely not 24/7. She is not active now, she just is. We are holding her 90% of the time, we take breaks to eat and shower, but keeping her in our arms, caring for her, and keeping her comfortable is top priority.
I could not do this as well without David here to partner in caring for her and supporting me. I love David and Eleanor so much and am glad David and I have each other to see us through. It is still hard to believe our baby is sick and we are going to lose our first born, it seems impossible.
I have been planning her funeral more lately, I bought her a beautiful swaddling blanket for the end, it has poppies on it, they are a symbol of remembrance, rest, peace, and deep sleep. I also decided I want to invite whoever wants to come. Before Eleanor was born, we had said we would keep the service small, just for our immediate family, but then she was born and alive. So many people have met her now, and she has touched so many lives. I don't want to keep anyone from her, whoever wants to meet her should, she is amazing. Unfortunately, we can't estimate how much longer she will be here with us, so it makes it difficult to plan on people meeting her. We just have to soak up every moment.
January 7
Eleanor's doctors visits this week have shown that her condition is deteriorating. Her seizures have increased throughout the day, multiple per hour and we are medicating her to ease her pain and discomfort. It is difficult to watch her seize, and difficult to medicate because she is in a sedated state and not the Eleanor we have come to know. It has been a very emotional week and I have been crying frequently. When her condition was better it was easier to ignore the inevitable, but we are faced with it now and don't know how much time we will have with her. I am so glad that David is here with us, the funds from the GoFundMe account that Aunt Gina setup have helped him stay home from work and care for/comfort his girls. I feel blessed to have this time with baby Elle, but this is just going to get harder.
January 1
We still have many unanswered questions about Eleanor's specific disabilities and have setup some doctors appointments to find answers. Eleanor is 19 days old, she has frequent seizures, trouble controlling her body temperature, no head control, lack of reflex, and low oxygen stats. We still need to test her endocrine system and find out if she has diabetes like many HPE kids. We don't believe she can smell (common with HPE kids) or hear, she doesn't react to sound or startle. We believe she can see, but we are unsure at what level, the nurse believes she can at least see shadows. It is difficult because it doesn't seem like much of a life for Eleanor, she can feel, she feels our touch, but I can't imagine being so limited with your senses. We were hoping she would not be able to feel pain, but unfortunately, that is one of the abilities she does have.
Due to her lack of head control she must lay flat, she will block her airway and stop breathing if in a normal car seat, so she has a special car bed for travel. While in the hospital she stopped breathing 3 times, but started back up on her own, without intervention. Once home, we have not noticed this. She has sleep apnea and will briefly stop breathing in her sleep, this causes her to wake up frequently, and leaves her sleeping less than your typical newborn, it is pretty exhausting. I am so glad David has been able to be home with us, I need him. I don't look forward to David returning to work and am trying to plan for the possibility that Eleanor may still be with us when I need to return to work. Typically a parent stays home with a disabled child, financially that would be extremely difficult for us, and we are trying to find other options.
It is still possible that she passes any day, there are so many unknowns. In many ways we treat our situation like she may be gone at any moment, as well as planning for the future with her. We kiss and love on her before leaving to take a shower or running to the store, just in case it is the last time.
The best news about Eleanor's condition is that she has been able to eat from a bottle! She does not have the ability to suck, but she does have the ability to swallow. The majority of Alobar HPE kids cannot swallow and must be fed via a tube that goes down their nose or mouth into their stomach. Based on her diagnosis, we thought it was a known fact that she would need to be fed via tube, but she has surprised us all. They make special bottles for babies that can't suck and the nipple uses the compression from the tongue and the roof of the mouth to deliver the milk. I am proud that I have been able to supply Eleanor with breastmilk via bottle feeding, it feels good to provide for my child.
Eleanor is here living with us at home on pediatric hospice, she is doing well, but her condition is terminal, and at times scary. The seizures frighten me, but the most involved part of her disorder is managing her temperature, it can plummet to 94 degrees out of no where and we rush to warm her, which can take hours. I hate taking her out in the cold, we have an 8am doctors appointment tomorrow and the high is 31 degrees, terrifying.
We love her very much and are blessed to have this time with her.
December 31
Eleanor was born Wednesday, December 13, 2017, at 3:41pm. She weighed 5 lbs 7 oz, and was 17 inches long. I want to do her birth story justice, but honestly, I am tired and sleep deprived. Having a newborn is hard! It has taken over 2 weeks for me to write this, just trying to find time. Please forgive any typos, I will probably come back and edit this in a month or so.
I had a scheduled c-section for Tuesday, December 19, 2017, at 37 weeks and 5 days (gestation is 40 weeks). The c-section was scheduled for earlier than full term, 40 weeks, due to Eleanor's head circumference. Her head measured 40 weeks at 32 weeks, and continued to grow. This eliminated the option of natural child birth. Eleanor ended up arriving 6 days earlier than her scheduled debut because my water broke at 36 weeks and 6 days, one day shy of "term," which made Eleanor a preemie. This was alarming to David and I, we hadn't prepared for her to come early. My extremely detailed birth plan was not yet finalized (I had a few revisions, but thought I still had time), and my hospital bag was not yet packed. My water broke a little before 9:30am on 12/13, I called David at work, the doctor's office, and texted my boss that I wouldn't make our scheduled call. David raced home from work, probably made it home by 10am, and was ready to rush me to the hospital, I had other plans... I asked him to do a load of laundry... yes, I know... I wanted my favorite yoga pants clean to take with us. I did my hair and makeup (photos, you know), and packed our hospital bags since we knew we would have at least 3 nights in the hospital due to recovery from my c-section. We ended up leaving the house and making it to the hospital by 12:13pm, on 12/13.
The doctors verified my water had broke and told me my c-section would happen at 3pm. Then the anesthesiologist pushed it to 5pm, due to the fact I ate breakfast around 9:30am (hey, I was pregnant and hungry). Then, my awesome Maternal Fetal Medicine Specialist (the doctor that would be delivering and thank goodness was on call that day) pushed it up to ASAP, over concern for me and Eleanor. I was wheeled back before 2:30pm. Now some of the details, maybe fast forward to the next section if you don't want to know about the medical procedures part. I had an epidural that was flawless and did not hurt, they treated me well. They prepped and draped me for surgery, and the whole time I was wondering when David would come in, I missed him. David has been amazing and we lean on each other a lot, the surgery scared me and I wanted to go through it with him, so I was anxious for his arrival. We elected to have a procedure called cephalocentesis directly prior to the c-section. The benefit of the cephalocentesis was that it would remove fluid from Eleanor's head and decrease her head circumference allowing for a smaller incision for my surgery, and less risk to me and any future pregnancies. The cephalocentesis also would benefit Eleanor, as she would have less fluid on her brain. The wonderful doctor was able to remove over a cup of fluid from Eleanor's head, it took two tries, but they were successful. Eleanor was in a pike position for the last 14 weeks, with her feet by her head in a breach position, and that is how she came out, bum first. Eleanor was wiped briefly and laid on my chest, David and I held her, and admired her, she was breathing! She didn't cry, she was fairly quiet, but she was breathing and didn't turn blue like we had been told to expect. I wish I could have held her longer, but I could still feel the pulling and pushing of surgery, and although pain isn't the exact word, I was extremely uncomfortable, so David took over holding her.
We spent about 30 minutes alone with her, as a family of three. We spent the time looking her over, crying, and loving her, then we started the parade of family. Our immediate family was all present to meet Eleanor, our parents, brothers, sisters, and their spouses. introductions to Eleanor's cousins took place later on. Unfortunately the drugs got the best of me on day 1 and it is mostly fuzzy, but I have some great pictures to help me remember the day. David had the honor of changing her first diaper, feeding her for the first time, and bathing her for the first time.
December 9
Yesterday we received a call from our amazing nurse and genetics counselor, David and I really like her. She called to let us know that our DNA results came back (blood drawn from David and I), showing that we don't have any chromosomal abnormalities, and what happened to Eleanor is not hereditary. This is a huge relief to us that in the future we can try again to have children. It also gave me a huge sense of relief for our siblings and how a hereditary link would affect them and their future children. Eleanor does have part of her 18th chromosome missing, and the concern was that even though David and I don't show signs or symptoms, we may have had a balanced translocation of chromosomes, that wouldn't be obvious, but could affect our children. But we don't, trying to focus on the good news today.
On the good news front, I wanted to share the story of the day we found out we were pregnant. I have written it down in our baby journal, but it is an abbreviated version since I wrote it by hand, and I hope to be able to look back at this blog entry for many years to come and remember the excitement and joy David and I felt when we first learned we were expecting our first child.
David and I wanted to grow our family and add children. We had been awaiting a positive pregnancy test for over a year and a half. I had taken a pregnancy test 5 days earlier that was negative, and had already told David this wouldn't be the month. This had become a normal conversation after the first few months of trying. I hadn't felt well the last few days, and decided on Sunday, 4/23/17, to take a pregnancy test, I had a ton of them, why not look and see again. To my utter disbelief, the test came back positive! Still not believing it, I took one of the "fancy" digital tests. I normally didn't use them because they were expensive, but this occasion called for one. It read "Pregnant!" I was excited and overwhelmed with joy.
David still lay asleep in our bed, so I climbed in and cuddled with him, kissed on him, and told him I was going to make us breakfast, a normal ritual on the weekend. I decided that I couldn't just blurt out the news while he was half asleep, the reaction wouldn't be the same. I had thought about cute ways to tell David so many times over the last few years, but none of them seemed quick enough, I wanted to tell him now!
We were both on the Whole30 diet, which can help with fertility (I guess it did!), and I made an egg omelette with sautéed spinach on top, the spinach was laid out to spell "PREGO," I couldn't fit pregnant on the omelette... David came into our breakfast nook, looked at his plate, and looked at me. I asked him what it said, and he said "PAEGO?" I asked him what it would spell if the "A" was and "R," at this point my eyes were full of happy tears. David asked "what?" and I said "we are pregnant!" We embraced and cried with joy together.
We then ate our lukewarm breakfast and spoke about the baby. We decided to go on a bike ride together, and start the pregnancy off with a healthy meal and some exercise. We were both so very happy and excited. I tried to be cautious with my optimism because I was painfully aware that 1 in 4 pregnancies end in miscarriage. I wanted this child so badly, and was fearful of any loss. The first few weeks were full of amazing moments of joy and delight. We were very happy.
December 5
I took a detour on the way home from therapy yesterday, and stopped by a beautiful cemetery that was recommended to us. I walked through the adult section until I came to Baby Land, a sweet but sad section of the cemetery dedicated to infants. There was a beautiful bridge over a tiny creek that led to the burial grounds of many infants, the dates on the tombstones were close together and some just had one date. Many were adorned with angels and lambs, it was the sweetest, saddest thing. Someone drove by, grounds maintenance or something, and I realized what a site I must be, 9 months pregnant (with a large belly) walking through baby land looking at each individual marker, bawling. I was sad for our daughter, but sad for these babies too, and their parents, grandparents, aunts, and uncles. Our Eleanor is already loved by so many, and I know these babies were too. By nature I am a planner, and I am having a very hard time not knowing what to plan for. I am planning for what we will do if she passes the same day she is born, if we are able to take her home for a few days, or if she lives a few weeks, but everything that is needed to do these thing is so different and I feel unprepared, lost. One thing I know is that she will pass and return to heaven, and at that time I will have a plan, because this is a certainty, a very unfortunate one.
While leaving the cemetery, still bawling, I realized this was something I should have done with David, my husband. He has a way of comforting me like no one else. I haven't been making it out of the house much lately, just doctors appointments, and I thought I could go by quickly and look since it was on my way home, but it was definitely something I should have had support through.
December 2
On Thursday, 11/2, we had a routine ultrasound that showed Eleanor’s head was enlarged. This was the first indication we had that anything was wrong. That day and night were incredibly difficult as we waited for answers. Earlier that day we were excited to see Eleanor on the ultrasound, and at first when the doctor mentioned her large head, I made a joke, not realizing the implications of what the doctor was saying. The next day, Friday, 11/3, we had
an appointment with Maternal-Fetal Medicine Specialists (MFM) for a specialized ultrasound, this ultrasound revealed that not only was Eleanor’s head enlarged, but that her brain did not properly form, the unofficial diagnosis was Alobar Holoprosencephaly (HPE). The doctor was matter of fact and made sure to explain that the condition was fatal. I asked him to write down the disorder, it sounded foreign to me. I was glad he gave us a name to what was going on so we could start researching and preparing. We had to wait an entire week before the
MRI, 11/10, and the MRI confirmed the diagnosis of Alobar HPE, the most severe form of HPE. Over the next few days/week we cried the most we have ever cried. The loss was overwhelming, our little girl was technically still with us, but we were already anticipating the loss and realizing the loss of all of our hopes and dreams for our daughter. We will miss out on the memorable milestones: first steps, first word, birthday parties, first day of school, watching her walk down the aisle, and have kids of her own.
Prior to the MRI, we had a fetal cardio echo, which showed no issues with Eleanor’s heart. We also had another ultrasound and an attempted amniocentesis. However, my amniotic fluid was too low, and we had to postpone the amnio. I remember how nice all the doctors were, so attentive. That has continued to be our experience, I guess that is what happens when your baby is very ill.
My sister, Julia, was incredibly helpful in finding us a grief therapist that deals with infant loss, who helped us with resources for perinatal loss. She also found us new Maternal-Fetal Medicine Specialists that are associated with Children’s Medical Center in Dallas. I saw the new MFM the following week, 11/15, and they were able to provide us with more information
about Eleanor’s condition, and were able to successfully complete an amniocentesis. The results of the amnio would give us answers about whether or not her disorder is genetic and could affect future pregnancies. Our new doctors were great, we felt very well taken care of and they spent a lot of time answering our questions, very patient.
Over the first two weeks after the diagnosis, I became physically ill. I came down with a chest cold, which the crying and lack of sleep did not help. My cough was so intense that I bruised my ribs, which I now know is incredibly painful. While going through this grief and physical illness, I also continued to have pregnancy symptoms, including heartburn from hell. I
kept thinking, is the grief not enough? I was miserable.
Thankfully David and I have had each other to help us through each day. Family has been there for us since day one, supporting us and listening to us. Our friends and co-workers have sent their thoughts and prayers, and we feel grateful for the support.
Our most recent doctors’ appointment, 11/30, was able to give us some results from the amniocentesis and we now know this disorder, HPE, was caused by a deletion in her 18th chromosome. It is a relief that her disorder is not the result of a random environmental factor leaving us without any real answers as to what caused all of this. We are now waiting on results of genetic testing, praying that this is not hereditary. We were also able to schedule a c-section for Eleanor’s delivery at 37 weeks, on Tuesday, 12/19. It helps to have something that is known in the middle of so many uncertainties.
We find it extremely difficult to prepare for Eleanor’s life and death at the same time. We worry about her pain and what life will be like for her. We plan to make her as comfortable as possible and love her until her last day. Part of this includes appreciating every day we have left with her during our pregnancy. We love her very much.
