Gathering Information and Resources

 Today has been a day of gathering information and resources that we can use now and for the future. 

I had to take a few days away from writing back to those who had reached out because it all was too real, it still is. Talking about our Full Trisomy 18 baby girl and having that uncertainty of what the future holds. Reading about the multiple stories of hope and then learning these precious babies and children have Mosaic Trisomy 18. It is knowing our baby has Full T18 (Trisomy 18) that makes this even more challenging. 

My list today is several pages long from those in the surrounding Kansas City area who have either walked this storm or know of those who have. Once I have a detailed collection I do hope to make a separate blog post and share so others may be able to benefit from it as well. We have to remember that we do not walk this path alone, unless we choose to walk this path alone. I know for my mental and emotional well-being I can not walk alone and need as much support as possible for myself and my family. 

Some suggestions in the local area include birthing through Children's Mercy and using the Children's Mercy Fetal Health Center. Several things they do to help offer support to families and sibling support also. I've been told Centerpoint Medical Center also offers support and many keepsakes for parents and siblings. 

Local support KC group and non-profit called You Made Me Mom. "Serving moms who have lost babies during pregnancy or infancy."

Now I Lay Me Down to Sleep, a volunteer organization of photographers who offer photography to families. 

A local KC organization that helps parents who are facing complications during pregnancy or experienced loss, Alexandra's House. A variety of support and services are available through them.  Alexandra's House has also helped serve people around the world. 

Several funeral homes have been suggested in the greater Kansas City and surrounding area that offer compassionate care for families and help with funeral, burial and cremation arrangements. First suggested was Langsford Funeral Home in Lee's Summit. Second suggestion we have received is Speaks Funeral Home in Independence, another that works hard to ensure services are what you want them to be. 

A few blogs have been recommended to us for hope, to see that we are not alone and that children out there have been able to thrive for longer than the expected duration. I've learned all suggested to me for reading so far are those children born with Mosaic Trisomy 18, however that does not completely discourage me and does help give hope. We know the odds are against us with our little girl having Full Trisomy 18. One blog suggested to follow is Loving Lavender, and the other is For The Love of Lillian - Trisomy 18 Princess. If you search on Facebook for Trisomy 18 you will see a large list of groups and pages in memory or support of those with children facing T18, and support for families. One group that has been suggested to me is Rare Trisomy Parents (was T18 Mommies), support there is private for parents in this group, they also have other support pages, a website, and groups available for parents. 

The Trisomy 18 Foundation has a Facebook Page as well as a website. I have shared some information from here already per their website however I look forward to following their Facebook page with hopes for inspirational support and continuing my collection of information and resources per their website. 

Have been told that the St. Luke's Heart of America is a wonderful milk bank and they do accept milk in honor of babies gone too soon. I'm hoping to be able to donate this time in memory as I was unable to donate after the loss of our identical twin daughters. 

There are books out there to help families and siblings who are grieving the loss of a sibling. A few suggested to me are My Sibling Still by Megan Lacourrege (available at bookstore online and Amazon), and Empty Arms by Pam Vredevelt (available at bookstores online and Amazon). Slumberkins and the Sprite book, helping children with grief and loss, also available with a Sprite snuggler and affirmation card (the book also available at bookstores online).  

I have also been told about studies, many I knew of already, this one I did not. Stanford Medicine study about heart surgery for Trisomy 13 and Trisomy 18. Newborns with trisomy 13 or 18 can benefit from heart surgery, October 17 2017. 

Lullaby of Hope is a ministry that helps women deal with infant loss. Providing gift boxes for women journeying loss in the womb. They have a Facebook page and a website that has more information. 

I have a growing list of questions to ask this week during our doctor's appointments. It is so difficult to decide what is best. I hope this first list can help those who need support. I thank everyone who's been able to help provide the information and resources so far. <3