A breakthrough for Potter’s babies

I remember reading when Representative Jaime Herrera Beutler was told that her baby had a fatal diagnosis of Potter’s Syndrome and that her and her husband decided to carry to term. I was so glad that someone in the public eye had made that choice so that others can see that it is a valid option and that terminating is not the only choice despite what doctors may tell their patients.

An article was recently published that shared more about her baby’s birth and life. Her baby was born alive and breathing. She has been doing well for 2 weeks now. During her pregnancy, several amnioinfusion procedures were performed to allow for lung development. Since her baby’s birth, she has been receiving dialysis for her lack of kidneys.

This is great news for families who are expecting a baby with Potter’s Syndrome because they know that there is hope for their baby to live when before doctors gave them no hope.

On the other hand, this news is quite the blow to families who have already had a baby with Potter’s Syndrome. This blow is especially hard for families who asked for the very same things (amnioinfusion and dialysis) and were told no. They were told that it would not help their baby and their baby would not survive even if these procedures were performed. Now it is proven that with these treatments, babies with Potter’s Syndrome can survive. It is a very hard pill to swallow and my heart goes out to all the families, including my friends, who have had to deal with some very tough emotions and grief with this news.

To Jaime and her husband, congratulations on the birth of your little girl. She really is a miracle. I hope that from her story she will be an example to other doctors out there that these treatments do work. I hope that more doctors will be willing to try them and save babies with Potter’s Syndrome. I pray that she continues to do well and that eventually she gets the kidney transplant she needs.

To my friends and Potter’s families, I’m so sorry that you were not given the chance to even try to save your very loved and much wanted babies. It isn’t right and it’s ok to be angry and to grieve over this news. I know how I would feel if it were my Carleigh and I would feel devastated to know that I could have done something but was prevented in doing it. My prayers go out to you.

The gift of perinatal hospice

I shared this video and status on FB yesterday evening and wanted to share here too.

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Ever wonder what the purpose of perinatal hospice is? This video shows very eloquently the journey of perinatal hospice for both family and caregiver. This just isn't a good idea or an afterthought. This is a model that needs to be implemented everywhere.

At Sufficient Grace Ministries for Women (and Families) Inc. this is what we offer families along with our bereavement services for those families who find out their baby has already passed. We have a deep passion for walking with families through difficult times when it would be easier to turn away.

When I was carrying Carleigh I contacted a perinatal hospice associated with a hospital and I never heard back from them. My husband and I had to navigate our own way through a foreign land. At SGM, we aren't just words on a paper or website to make ourselves look better. We do what we say we will do and our goal is if a family asks for our services, we do not turn them down.

Over 4 years ago, after learning my daughter had a fatal diagnosis, I wondered why God would choose me to carry a child that would not survive. This is why. I cannot give thanks enough that God would allow me to be in the most sacred of places and to share moments that few on this earth will ever witness. It is a great honor and privilege. I can't say it enough.

If you or someone you know is in need of our services, please contact us. To find out more about what we offer, please visit our website. www.sufficientgraceministries.org

And thank you Kelly Gerken for being with me every step of the way while God blows our socks off.

For the Love of Carleigh ♥

Megan from Teeny Tears shared with me the recent post on the Teeny Tears blog highlight the diapers donated by Stillbirthday in memory of Carleigh to the hospital where I work.

You can read it HERE.

Seasons of Grief

I wanted to share a little about Seasons of Grief. It was created by my friend Shannon in memory of her daughter Skylar to “ help your heart heal and to celebrate your memories.” You can read her story here.

Shannon created a beautiful centerpiece for me that celebrates Carleigh. It turned out so beautiful. Here are pictures of it inside and outside.

Seasons of Grief, in addition to centerpieces, also offer cards, bookmarks, mistletoe, and name pictures.

July Babies

♥ Remembering those babies with special days in July. ♥

Jonathan ~ July 1, 2009
Samuel ~ July 1, 1992
Leah ~ July 2, 2008
Tristen ~ July 3, 2010
Chai ~ July 3, 2010
Madeleine ~ July 7, 2009
Noah ~ July 7, 2009
Weston ~ July 7, 2012
Solomon ~ July 8, 2010
Rylyn ~ July 9, 2005
Vivian & Annemarie ~ July 12, 2008
Hunter ~ July 12, 2001
Heather ~ July 13, 2001
Jeremiah ~ July 13, 2010
Noah ~ July 13, 2010
Jillian ~ July 14, 2009
Thomas ~ July 14, 1998
Isaac ~ July 14, 2005
Gabriel ~ July 19, 2012
Alanna ~ July 21, 2009
Nathan ~ July 21, 2011
Faith ~ July 22, 2009
Bryston ~ July 24, 2009
Luke & Aaron ~ July 24, 1996
Amiee ~ July 25, 2009
Anna ~ July 25, 1998
Evan ~ July 25, 2009
Babybear ~ July 25, 2008
Brydon ~ July 25, 2006
Matthew ~ July 27, 2002
Jayden ~ July 27, 2007
Amelia ~ July 28, 2010
Kathlyn ~ July 30, 2009
Little One ~ July 30, 2008

If you would like your baby added please leave a comment.