Wednesday, January 15, 2014

Echocardiogram results.

We had a follow-up echocardiogram yesterday at Brenners.  It went as well as can be expected.

The doctor saw a couple of tiny holes between the chambers of the heart.  Typically in a Trisomy 18 baby they expect to see a very large hole.  He did not seem to concerned with these tiny holes and said that holes that size typically don't pose a problem for babies until they are a little older.

If Rebecca did not have Trisomy 18, the typical path to repairing these holes would be to do surgery when she was a couple of months old.  However, because she has Trisomy 18 these holes will most likely not be addressed.

He said that  last week's ultrasound findings of the small stomach and problems with the esophagus, would be the more pressing issues immediately after the delivery.

Dan and I really need to start thinking about what level of care we want for her after delivery.

Are we going to press for surgery to repair the esophagus? Are we going to have feeding tubes put directly into her stomach? Are we going to press for another echo of the heart to see if there are any other problems?  Are we going to just request that she be kept comfortable and enjoy any amount of time we get with her?

These are all things that have been weighing on my mind.  I think we will be in a little better position to make some of these decision after another ultrasound on the 30th. And at that point, we can begin the process of consulting with surgeons to get their opinions and to further figure out our options.  The more information we can get from these ultrasounds, the better prepared we will all be at her delivery.

However, all of this seems a little futile to me.  Because her diagnosis is "lethal" (such a lovely term to be used when discussing your unborn child) the doctors are less willing to do any type of surgery because it would not extend her life. So even though they are presenting us with some possible options, I am not sure they would actually do any type of surgery (except inserting the feeding tube).

So where does this leave me?

Still loving my sweet little Rebecca.  Still treasuring every single kick and punch (and man, does she like to kick and punch!).  Still enjoying her sweet movements every time I get to see them on an ultrasound machine.

And still praying to God for healing for her.

I know healing on this earth might not be in His plan for her, but I continue to pray for a miracle.

17 comments:

jennwa said...

Praying strength and a miracle.

Wendy said...

All those kicks and punches show she is a little fighter in spite of her diagnosis. Like Jennifer said, still praying for strength and a miracle.

Diane Teague said...

Praying for your miracle. Praying for God's peace in whatever you decide. Praying for Rebecca, you and your whole family. Praying the for wisdom for the doctors. You are not alone. God is with you and we are also praying.

Billie Jo said...

I like what Wendy said...

And I join everyone here praying for you, and admiring your strength and faith. : )

Ferrell Boys Mom said...

I agree with everyone above and join them in praying for you and your sweet baby, Rebecca. Lovely name.
God Bless!

Mary Lenaburg said...

We will continue to prayer for yours and dan's strength to face whatever is coming. We will continue to pray for a miracle for little Rebecca. For today revel in those kicks, write her a love letter so you remember the joy of this moment. It may help later when the hardest part come. She is your daughter. Love her. Cherish her and just be in today. God will take care of tomorrow.
Blessings friends. We are praying hard!!

Madeline said...

Oh little fighter Rebecca. I am praying for strength. I am praying (and how I am hoping) for a miracle. And I am also going to pray for guidance.

Rebecca is so lucky to have a family who is willing to fight for her in every way they know how--whatever the choice may be. Fighting for her quality of life whether that be surgery or not is incredibly brave. You are such a strong example of parenting!

Colleen said...

We all just want the best for our children, don't we? I've been really thinking a lot about what "the best" means, and the final goal is to get our kids to Heaven so they can have happiness for all eternity. No matter what you decide, Rebecca is loved and will be a Saint, which is the best possible outcome. I am praying for a miracle too, but also that you can find peace in whatever happens. You are so strong, Beth, and we are all here for you!!!!

Amelia Bentrup said...

I so admire your strength. We are praying for you all and for little Rebecca.

Mari said...

These are some hard decisions. Praying for a miracle and clear direction for you and Dan too.

Elise said...

Continued prayers for you, Rebecca, and your whole family, Beth...

Busy Bee Suz said...

Still praying for a miracle for Rebecca.
Enjoy those little kicks and punches; what a gift.
XO

Amy Wells said...

Praying and claiming your miracle. May you feel His peace and love stronger than ever today.

Kelli said...

Praying for your sweet Rebecca and for you and your husband.
Cherish those kicks...what blessings they are.

Rebekah Es said...

Strength and wisdom to you and your husband while making these hard decisions. Praying continually for you...

deborah said...

Praying for you all! And I like Rebecca's name. That's my mom's name, although she has always been called Becky and my sister's youngest daughter is named Becca.

You have a lot going on right now with your dear baby girl and your mother-in-law. So glad you have the strength of God with you and may peace and joy continue to be yours.

Micaela Darr said...

You keep praying for a miracle, Beth. You honor God's greatness when you ask great things of him. Hugs and many prayers with all the things you're going through.