Thursday, August 25, 2011

The tough information and tough decisions that lie ahead...

When we first got our diagnosis, I hopped online and found a spectacular woman's blog whose son was diagnosed with the same condition. I spent much of the day reading her blog and getting to know her, I found that she was an inspirational, faithful person who had more strength than I could ever imagine. She carried her son to full term.  I emailed her after reading her blog and have been in communication ever since. Here's the link to the blog. She gives a lot of hope strength and courage throughout her story.

I received a call yesterday from Dr Lander's, our regular Dr. She wanted to let me know that if we chose to, we can deliver at Woodwinds and that she would be happy to be there. She is the Dr who delivered Evelyn so this little act of kindness brought us a little more strength through this process. She got me in contact with an outreach nurse named Sheila who also works at Woodwinds and works with pregnancy loss. I talked to her for quite some time last night. She was able to answer questions, give us some comfort, and was especially sweet. She explained to us what things to expect when we chose to deliver. She said that they would find us a more private room away from all the new parents and their babies.  I expressed my concern about pitocin delivery because I can't have an epidural and apparently they have some options without amesia side effects to help with that. She said that Woodwinds is prepared with clay for foot and hand prints, as well as ink hand and footprints - as many as we want. They have little buntings to put the baby in that are handmade and donated to the hospital as well as blankets and little hats.She explained that we would be allowed to keep baby in our room as long or as short as we feel comfortable with and that she has a connection with the "Now I lay me down to sleep" photographers and she would be willing to make those calls for us. We will be in the hospital either overnight or two nights depending on how I'm feeling and what we want. She wanted to also let us know that a local church has a cemetary specifically for infants and preemies and it is free of charge except for the cradle (casket) which would be about $75. They also have connections to a funeral home that will take care of transportation of the baby and preparing the baby free of charge. The only other cost would be for a head/footstone which runs about $250 there. Woodwinds will cover the cost of the autopsy and MN Care will cover the cost of further chromosomal testing to see what our risks are for the future. Finances were a huge concern for us, lord knows we don't have a lot of money, so as hard as it was to talk about it also helped ease our minds about some things too. Both her and Dr Landers were very sympathetic and understanding about the fact that we are struggling with deciding when we will know the time is right, and both said that when we know all we have to do is give them a call, whether thats 2 weeks, 6 weeks or 10 weeks from now just to let them know. I got home/cell numbers for both of them incase there is anything we need or an update on any decisions we've made.

We hope we will get a message from above, letting us know when its ok to let go, telling us what the best decision is going to be for us. In the meantime, we are going down to my Aunt and Uncle's house. About 20 years ago, they lost twin boys at 18 weeks (or so) and I feel that talking to my aunt is going to help me understand what to expect and what is in store for us in the near future.  I'm hoping Derrick will also get some comfort tonight from my  uncle and knowing that they understand exactly what we are going through.

There has been an outpouring of love and support from everyone in all aspects of our lives. It is so comforting to know we have so many friends and family around us that love and support us through all of this. Its an amazing gift to have such a strong support system to help guide us during such a difficult time.

On a positive note:
Evelyn continues to be the light of our lives every single day. She always amazes us with everything she does. She's getting so big now its hard to believe she was once a little tyke. We aren't sure how we ended up with such a smart, loving, sweet little girl but we're thankful everyday that we did. I am eternally grateful for her presense in our lives.  She says so many words now: Hi, Hi Daddy, cat, dog, mama,  thank you, and pretty much anything you say after you say it. It isn't always clear, but we always know what she's trying to say. She is such a good eater, the only thing she won't eat is yogurt and oatmeal... otherwise she'll eat everything else.

"An angel in the book of life wrote in my babies birthday, when she closed the book she said 'too beautiful for earth'"


  1. Hello from the Bump! _fowler here-- just wanted to say I'm praying for you guys & am really glad you found the other blog & have support from someone who has been there.

  2. I wanted to say It breaks my heart you are having to go through this. I know it does not make a difference but I am deeply sorry you are having to go through this. If you ever need somebody to listen my offer still stands. I stay on the PgAL board.
    anmagyari from thebump