Monday, September 24, 2007

Remembering what could have been...

So I came across Jack's birth plan. Someone on one of my support groups is going through what we went through, so I sent it to her.

I've been really thinking about that time. Mostly because of the speaking in my friend's class. And now reliving it through this mom. It's been kind of sobering. To look back on it. When I was looking for the birth plan, I found an email Steve had sent to the Funeral Association. I can't believe what went on in that conversation. It talked about how funeral homes don't charge for services for infants under one. But the do charge for "product". So if we wanted to hand make a casket, we could. It talked about cremation, and how she was going to send us a pamphlet on how LDS church leaders felt about it. It talked about how Steve had looked into how much burial plots were, at the cemetery a few blocks from our house. I don't think I ever talked about that before. It's humbling to share it now.

I also wanted to share what my birth plan said. Here are some excerpts, I'm leaving out the "details", other medical things, that are irrelevant to the feelings.

We would like this day is to be a celebration, regardless of outcome. Our beloved baby has been diagnosed with Semi lobar Holoprosencephaly, among other things. We are expecting him to live, but we also know that he may not. If that is to be, see pg. 2 of this birth plan. Please, when you speak to us, be up beat. Please don't talk about Jackson not surviving.

~We would like the OR staff to be upbeat as well. Again we are expecting him to live, please join us.

Here is pg 2:

In the event it looks like he’s not going to make it:

Please call our baby by his name, Jackson. This is our child, whom we love deeply. This love compels us to revere and treasure every moment of our baby’s life to its fullest natural extent. Your compassion and understanding during this bittersweet and difficult time are appreciated deeply. We believe that the memories of our actions during this sacred time with him will later console us.

We understand that after the birth, situations may arise that were not anticipated and decisions will need to be made. We want every measure taken to sustain his life. But if he is not doing well, we will listen to the advice Neonatolgist, and NICU team. We simply ask you to keep us informed so we can participate in the decisions as to what is best for Jackson; that no intervention be taken without our approval, other than what is outlined above. We trust you will respect our wishes.

After our baby is born, we ask that he be wiped, suctioned (if indicated), wrapped in a blanket and, handed to the nurse. Please hand Jackson first to Steven, who will bring him to me, as we wish to cuddle our baby immediately. We ask that vital signs, weight, medications and labs be postponed, if possible.

If Jackson has fewer problems than expected, please see pg 1 and discuss all possible testing/treatment options with us.

Other than routine post- delivery care, we wish for private time with our baby. We will discuss any exceptions that should be made.

We would like Jackson to be blessed by Steven ASAP.

Memorial / funeral plans have been made for Jackson, through Seren-i-care.

We wish to hold Jackson as he is dying or has died and want to keep his precious little body with us as long as possible. We would like to bathe and dress him. We have an outfit and a burial garment.

We would like to keep the following items as keepsakes: lock of hair, ID bracelet, crib card, hand and foot molds, birth certificate, weight card, hat/blanket/clothes, family hand prints, and photographs- color and black and white.

Please give instructions to Jenny on comfort measures for breast engorgement. (If you don't know, your milk comes in, whether you breastfeed or not, or if your baby dies. So yucky.)

Regarding our other children, we will decide what to do at the appropriate time.

We want an autopsy.

We would like Jackson to be an organ donor.

Thank you so much for helping us to make this bittersweet time more bearable.

I just can't believe this ever occurred. I look at him now, and can't believe we had to even type the above words out. I will admit, I often forget. I think it's a defense mechanism. I really don't know how we got through it. We just did. We had faith, and support, and love, from places and people we never thought we would.

While I am grateful for the experience, I never want to go through it again, and it's hard to watch other people go through it. I just hope I can be as supportive to them , as everyone was to us.


Jenn K. said...

WOW! This made me cry. I can't believe that you had to deal with all of that. I am always amazed with how strong you are.

Sis Sarah said...

Crying here.

I must of been in denial, cause I always thought he would be fine. I knew that Jack and Wes would become friends one day. Just knew it.

How wonderful that you are able to help other's down this journey. I'm sure some will have good outcomes like you and some will not but not being prepared and allowing the entire experience to be a medical nightmare has got to be worse.

Thank you for sharing.

Lisa M. said...

This floors me on seventeen different levels and in twenty eight different languages.

I had never heard of a birth plan, until you told me about yours, and I didn't even conceive that it would hold such details.

Thanks for sharing this with us.

Isn't it funny how these lessons... teach us? and how we, those of us, who have knowledge about it, can.. help.

I've experienced this, through ECMO support.

I'm at a place in life, where I am doing things I didn't even know I could. And like you, the lessons I am still learning.

I am very grateful to know you.
And you too Jenn K and Sarah.

It's an interesting ride, isn't it?

Naylor Family said...

Oh Jenny! I don't know how you do it! Just reading this was hard! I think I cry more reading your blog than anyone else's...*wink*...Sure love you and admire your strength and courage!