Tuesday, December 3, 2013

Praying for the best. Planning for the worst.

Last Monday afternoon, we got the call with the test results.  And on Wednesday we were sitting in the genetic counselor's office.

I didn't want to go.  I didn't want to hear said out loud all the things I had been reading on the internet.

But ultimately I'm glad we went.  While we did have to hear all the things I didn't want to hear, the counselor was kind and compassionate and she seemed genuinely sad that she had to tell us all of these horrible things about our baby.

We will go next Wednesday for an echocardiogram at Brenner Children's Hospital.  At the ultrasound that was done a few weeks ago the technician wasn't able to get any good views of the heart.  Trisomy 18 babies typically have heart problems so this echo will help doctor's have a better understanding of what heart problems we can expect her to have.

After the ultrasound, we will go back to the Comprehensive Fetal Care Center (where we had the counseling session) for another ultrasound to see how the baby has grown in the last month and to determine what other problems she may have.

We will have several more ultrasounds up through delivery to give the doctors the best idea of what we can expect at her birth.

The counselor is also going to set up a meeting with a neonatologist so that we can go set up a plan of care for our baby after she's born.  Assuming she isn't stillborn, we need to have a plan as to how much action we want the doctors to take.  Do we want no procedures done and only take care of her pain levels and insure that she is comfortable or do we want them to take every possible measure they can to keep her alive for as long as they can.  Or do we want something in between. This plan is put into place ahead of time based on what is seen in the ultrasounds and other tests and knowing that these change at delivery.  But it's better to have a  well thought-out plan in place before delivery so we aren't faced with as many questions right after delivery.

We talked about a lot of other things.

We talked about her being able to stay in the room with me immediately following delivery if possible while I'm being sewn up from my C-section.  My biggest fear is that she will be born alive and only live for a few minutes and that I won't be able to hold her because I'm still on the operating table.  The counselor assured me that the doctors use different procedures with babies that aren't expected to live long to allow family as much time as possible with them.

We talked about the kids being able to hold her if she's born alive or just being able to see her if she's stillborn.

We talked about the photographers that the hospital have available to take pictures of the baby right after she's born if we want that.

We talked about having a priest in the delivery room.  

We are still praying for a miracle but we are making plans as if we don't expect one.  That feels wrong to me.  Like I don't trust God.  Like I don't have the faith that he will heal her.  And I guess while I know that he can heal her, I'm just not sure if he will heal her.

So we are praying for the best and planning for the worst. 

18 comments:

Ferrell Boys Mom said...

My heart breaks for you and all you're going through! I pray for you and your baby on a regular basis. Our God is faithful and His plan, whatever it is, is the perfect plan even if we don't understand it now. Just continue to trust in His plan for y'all and rest assured that God is with you and your sweet girl through this. Praying for y'all!

Madeline said...

I don't think expecting a miracle is ever in God's plan. That's why they are miraculous when they occur. So by all means keep praying for a miracle but plan for the worst. That's not you losing hope or trust at all the way I see it. Know that blogyland is wrapping you and your entire family in prayers!!

Billie Jo said...

My friend...
Sending prayers and hugs across the bloggy miles...

geeneen said...

I can't begin to imagine what you and your family are going through. To face the unknown and yet have hope that this is all just a bad dream. I am praying for you and your baby. I pray God guides you and holds you steadfast in his arms.

Colleen said...

So many things for you to ponder! I would just carry a bottle of Holy Water with me and that way you are prepared for an emergency Baptism that you or your husband can do. Just know that this baby girl was chosen by God to be part of your family, and He can see the big picture. She was created in Love and no matter what happens, she is a blessing to us all.

Elise said...

Dear Beth...this is my first time commenting here, but I have been following your blog for a little while now. Just wanted you to know that I am praying for you and yours...

Jenny said...

We're praying for you every day, and I'm in tears as I write this. You are the mother God chose for this precious little soul, and I pray He will give you the gift of holding this perfect little person in your arms on her birthday, whenever that will be. Praying for a miracle and preparing for the Cross seems just the right tactic to take.

Mari said...

I'm in tears as I read this. I'm sorry you have to make these kinds of plans. I love what Madeline said - that sums it up well. And I'm still praying.

Erica Saint said...

Prayers continue for you and your daughter.

Aimee said...

Well, I guess this is where living pro-life gets really tested, right? You have so many decisions to make based on an unknown, but I don't think that means you are not trusting God. You are carrying your baby, you are loving your baby, you are cooperating with God's plan for her life - whatever that may be. It is not untrusting to make plans for her health and yours, especially if there are ways that you can make her feel comfortable or pain-free. You don't know how long you will get with her before she is called back to heaven, so I think it's wise to make plans to make the most of that time.
God sees your "yes" to this baby's life, and St. John of the Cross says: ”God is more pleased to behold the lowest degree of obedience, for His sake, than all other good works which you can possibly offer to Him.”
Keeping you in my prayers, Beth.

Angel said...

Beth...there are no words, just know I'm putting it out in the universe of prayer.. you are in my heart & in my prayers...if you need an ear, shoulder or anything...I'm always here... all my love. .
Angel

Busy Bee Suz said...

I think all the planning you are doing now, will help your hearts later on. Having things in place will make it easier for the kids too; well, nothing here is 'easy'. Still praying for you and your little girl.
XOXO

Kay said...

Bless your hearts. There is nothing easy about any of this. And as Suz said, it will make things easier, or less hard, but nothing can make this easy. Have you heard of Angie Smith? She is the wife of Selah singer Todd Smith. They have walked this journey. She has an amazing blog and has written several books since their loss. I am praying for you as you make hard decisions in the days to come.

Kathryn said...

Beth, I wish I had the words, the wisdom, the ability to take away this horribly heavy cross you and your family now bear. Those are questions no parent wants to talk about or answer. We've been there. I just wanted you to know I'm lifting you up in prayer. I'm praying that the visit with the neonatologist is fruitful and peace-filled. I don't think planning for the worst is not trusting in a miracle. God already knows your heart. Every last fear and hope and joy. Walk with grace and know that prayers will sustain you on the hard days. Hugs to you from Texas. ~K

Rebekah Es said...

I am praying for discernment for you, Beth. God put this little priceless one into your life, she is His own. Blessings on you all.

rhemashope said...

{{Beth}}
Praying with you.

jennwa said...

You are always in my thoughts and prayers.

Kim said...

So, I had to scroll back to this post after reading the one around dec 18. Again--you are an amazing witness to life and am honored to "know" you via internet.

But, from someone who endured stillbirth, whether the baby is stillborn or lives a long long life you are going to want photographers! take as many pictures as possible. It may sound weird to want to photograph a baby that is dying or dead but you will want these pictures! And again even in the best scenario you will want pics of your babies first moments so I wouldn't say, prepare for the worst--no its not that, its embracing life to the fullest. Consider hiring a professional photographer yourself. I think there is an organization that used to be called 'a very special picture' ?? perhaps? Not sure.

I had 2 priests at the entire delivery. Again--not for the worst, we were believing there was a chance also. But, the sense of calm and peace that they brought was so important. they prayed over the baby and with me the whole time and offered support for the family and my husband throughout it all. Silly me was embarrassed at the time since I was crying but I am so glad they were there in retrospect.