Names in the Sand

Happy 17 month birthday to our sweet angel! We love you!

Names in the Sand by Carly Marie Dudley of Project Heal

Thoughts on Our Experience with Hospice

4/27/2011

My experience with Julia and my interactions with other families dealing with a trisomy 18 diagnosis has changed the way I think and feel about hospice care, especially when babies are the patients involved. In pharmacy school, one of the classes I took was called Care of the Terminally Ill. Through the class I developed an understanding and considerable appreciation for the tenets of hospice care. Living wills and DNRs seemed so important for end of life care. I'm sure that is still true...but not with a newborn.

When we were discharged from the hospital when Julia was 2 days old, we enrolled in hospice care. Our doctors advised this as they anticipated that Julia only had a few days to live. To enroll in hospice care, we were required to sign a do not resuscitate (DNR) order. Yikes. We arrived home and that very afternoon were met by a nurse and a physician from the hospice agency. Neither had experience with trisomy 18 and were not trained in any kind of pediatrics. The first thing they gave us was a prescription for morphine to "keep Julia comfortable." This is a common practice in hospice care for patients of all ages, and while the purpose is not to hasten death, the tendency of morphine to depress or slow respirations can certainly contribute in vulnerable patients. They (hospice) then described one or two scenarios they thought would be the likely way Julia would pass away. They succeeded in frightening us, and we filled the morphine prescription that day. We watched every breath Julia took for the first 36-48 hours we were home. There was one scare the first night that made us wonder for a moment about using morphine, but we did not. Looking back, I think we were so focused on and frightened by the scenarios given to us that we were not able to use our good judgment and years of medical education to assess if morphine would have been appropriate. After all, Julia was not in pain or having difficulty breathing. She made some different sounds while she was breathing but then returned to normal. We decided to put the morphine away and we never considered it again.

Our experience with hospice over the subsequent weeks and months involved having a hospice nurse come to our house every other week to check on Julia. The nurse listened to Julia's heart, measured her pulse, and counted her respirations. She asked about Julia's eating but never brought a baby scale to check her weight. (We purchased one ourselves.) We went through three nurses in our 6 months on hospice. I cannot think of any ways in which we benefited from this.  Our needs with Julia were minimal, but that was all the more reason that hospice did not make sense for us.

When we talked about discontinuing hospice services, the agency cautioned us that if Julia passed away in our home without hospice care then we would be subjected to questioning and an investigation by the police.  If we were under hospice care, all we would do is contact hospice and the funeral home.  No paramedics, no police. It seemed to be another routine practice of hospice that was meant to comfort us but instead only frightened us. We decided that we wanted the paramedics to come if something happened.  We wanted her rushed to the hospital. We wanted her life saved if at all possible. We removed the DNR order from her records.

Other families of T18 babies I have spoken with who have discontinued hospice have felt similar to us. They report hospice nurses telling them at every visit that their babies were declining and probably would not last much longer. But here is the thing: they don't know that! They cannot know that! Not one of the hospice nurses thought Julia could make it to one year. Not one. It is very hard to trust hospice staff with a baby. Their normal patients are not babies. And they certainly have almost zero experience with babies living with trisomy 18. This is a huge quandry.  To obtain nursing care immediately after discharge from the hospital with a newborn, there is not really another route other than hospice.  The system -- medical and insurance --- is not set up that way. After a few months alternative care can be arranged, but that takes time and who knows how much time one will have?

I do know that not everyone in a similar situation to ours has a negative experience with hospice. However, when you want to give your baby every chance at life because they have shown that they can live and grow and learn in spite of their challenges, then hospice often just does not fit. We were much happier without hospice. Our regular doctors were much more responsive to us and helpful to us. We wanted to focus on her life. And that's what we did. We cancelled hospice and never regretted it.

Sister Smiles

This is one of my very favorite pictures of Sydney and Julia.  Sydney and Isaac could make Julia smile so easily.  She loved hearing their voices and just being near them. Precious memories...

4/16/2011

The Nurse

When Julia was born and whisked away to the NICU, I was sent to the baby floor without my baby. I was okay, though, knowing she was where she needed to be for the doctors to evaluate her and make a plan for her care. The next day we received the trisomy 18 diagnosis. We decided we could no longer be separated from her and she was discharged from the NICU. By this time she was already breathing on her own without supplemental oxygen. Julia joined me in the baby floor until I could be discharged (after a c section) The hospital staff were all kind and respectful of our situation. They left us alone and allowed us to bond with Julia and just be together. There was one nurse, though, who made a lasting impact on us. She was our day nurse and had asked to be assigned to us each day. She shared with me that her first child passed away soon after birth. She did not get to take care of him or mother him until he passed away. She did not want that for me. She knew we may only have days with Julia (only God and Julia had other plans), and she wanted to make sure we made the most of them. She was very kind and open with her story and with her tears. She made us feel like we were not in the wrong place on the baby floor. Our baby was special and should be celebrated, too. We will never forget her. I hope one day I can find her again and share Julia's story with her.

More Smiles

Looking back again at photos from one year ago with Julia blessing us with more smiles...

And here is a video of smiley Julia!

The Gift of Your Smile

Dear Julia,
One year ago today, April 10, will always be the best day of my life. On that day, at the age of four months and ten days, you gave us your first real non-sleeping smile! This was a day I dreamed about and longed for without knowing if or when we would ever see it! That very day, Sydney and Isaac and I had lunch with friends Lisa and Noah, and I had just told Lisa at lunch how very much I wished for you to smile. When we arrived home, daddy was holding you. We all crowded around you, and you looked up and smiled a huge smile! And then you kept smiling! The cameras came out and you kept smiling! Your smile told us so much. It told us that you were feeling good. It told us that you felt loved. It told us that you were happy! The hope of your smile carried us through many hard days. Your genuine, responsive smile inspired us to cherish every day with you. And the memory of your smile still gets us through every day without you. We love you so much and are so thankful to be your family.



If you have difficulty viewing the video, click here.

Easter Photos

Memories of Easter 2011...

Our Family, Easter 2011

Cousins

Sweet Siblings

Cousins with Nana and Grandad

New Memories of Easter 2012...

Julia's tree decorated for Easter/spring

Easter Us

I wanted to share this Easter prayer written by theologian Walter Brueggeman:

Easter us

You God who terrified the waters,
who crashed your thunder,
who shook the earth, and
scared the wits out of chaos.
You God who with strong arm saved your people
by miracle and wonder and majestic act.
You are the same God to whom we turn,
we turn in our days of trouble,
and in our weary nights;
we look for steadfast love and are dismayed,
we wait for your promises, but wait in fatigue,
we ponder your forgetfulness and lack of compassion,
and we grow silent.
Our lives, addressed to you,
have this bitter-sweet taste of
loud-clashing miracles and weak-kneed doubt.
So we come in our bewilderment and wonderment,
deeply trusting, almost afraid to trust much,
passionately insisting, too timid to insist much,
fervently hoping, exhausted for hoping too much.
Look upon us in our deep need,
mark the wounds of our brothers and sisters just here,
notice the turmoil in our lives, and the lives of our families,
credit the incongruity of the rich and the poor in our very city,
and the staggering injustices abroad in our land,
tend to the rage out of control, rage justified by displacement,
rage gone crazy by absence, silence, and deprivation,
measure the suffering,
count the sufferers,
number the wounds.
You tamer of chaos and mender of all tears in the canvas of creation,
we ponder your suffering,
your crown of thorns,
your garment taken in lottery,
your mocked life,
and now we throw upon your suffering humiliation,
the suffering of the world.
You defeater of death, whose power could not hold you,
come in your Easter,
come in your sweeping victory,
come in your glorious new life.
Easter us,
salve wounds,
break injustice,
bring peace,
guarantee neighbor,
Easter us in joy and strength.
Be our God, be your true self, lord of life,
massively turn our life toward your life
and away from our anti-neighbor, anti-self deathliness.
Hear our thankful, grateful, unashamed Hallelujah!
Amen.

Walter Brueggeman

The Saturday

We wait
We wait in faith. We wait in doubt. We wait in hope. We wait.
We wait in mourning. We wait in joy. We wait.
We wait at the dawn. We wait in the evening. We wait.
We wait in solitude. We wait in community. We wait.
We wait in timidity. We wait in boldness. We wait.
We wait for death's sting to diminish. We wait to share in your victory over death. We wait for resurrection. We wait.

Cherry Blossoms

My absolute favorite time of the year in DC is the annual Cherry Blossom Festival. The cherry blossom trees are just magnificent and they transform DC into a place of beauty. One of my favorite days with Julia was the day we took her downtown to see the trees in full bloom -- one year ago today. So thankful for these memories with our sweet girl...

With our friends Dave and Ruth

T18 Awareness Videos

These videos were compiled by  fellow Trisomy 18 Moms in honor of Trisomy Awareness Month. Thank you, Jill and Kelly, for putting together such beautiful tributes! The videos show fragility, resilience, perseverance, life, hope, and most of all love.
Julia's photos appear at the 2:16 mark in the first video (above) and our family appears at the 1:20 mark in the second video (below).