Friday, January 10, 2014

No good news.

We got zero good news from Rebecca's ultrasound yesterday.  However, I did enjoy seeing her beautiful little face and watching her kick and punch.  Yesterday, I realized, that unless God does decide to heal her miraculously, I probably will not get to see those typical baby movements in real life.

1.  She is tiny.  Currently she's measuring in the 20th percentile for her age.  As of yesterday she weighed 1 pound, 7 ounces.  (I can't remember how long she was.)  All Trisomy 18 babies are small and usually this smallness is due in part to problems with the esophagus.

2.  The doctor confirmed that he sees a problem with her espophagus.  Either she has a blocked esophagus or she has a tracheoesophageal fistula (TEF) which represents an abnormal opening between the trachea and esophagus.

3.Either way, all the amniotic fluid (food) she is trying to ingest isn't making it's way to her stomach which means she isn't getting what she needs to grow properly.  This is also confirmed with the fact that her "stomach bubble" as the doctor called it is measuring too small.  

4. Because she isn't ingesting and then expelling the amniotic fluid as waste like she should be, extra amniotic fluid is building up in my uterus.  If this continues to happen, my body will think that the baby is big enough and ready to be delivered when in fact it's just excess amniotic fluid.  This means I could go into premature labor.

5.  At the echocardiogram we had last month, the cardiologist could see no problems with her heart.  We were so excited to get that news because most T18 babies have heart problems and we were hopeful that we would get a little extra time with her.  However, the doctor yesterday said the heart appeared to show signs of thickening.  Which means her heart muscle is working extra head to do it's job so there might be an issue.  We have another echo on Tuesday so we will see if the cardiologist sees the same issue.

6. I could clearly see in the 4D images that her head is strawberry shaped as they call it (it comes to a bit of a point in the back) and her ears are tiny and low set.  Both of these are traits of Trisomy 18 babies.

7.  Her hands continued to remained clenched and at one point in the ultrasound, I could see the index finger and the pinkie finger laying over the two middle fingers. Yet another trait of Trisomy 18.

The doctor, who was absolutely the sweetest doctor we have met yet, confirmed that everything he saw was further proof that the Harmony test,which gave us the diagnosis of Trisomy 18, was accurate.  

At dinner last night, Dan stressed to the kids that Rebecca was very sick and most likely wouldn't live very long.  Peter understands the gravity of the situation and yesterday was telling me that he's mad at God that Rebecca is sick.  I've been trying to make sure that  Sarah understands the situation for several weeks now but she continues to make plans and asks questions that make me realize she's not truly getting it.

I want her to be prepared for what is probably the eventual reality. But every time I try to explain things to her, she gets mad at me and tells me that I should be praying for a miracle. Which trust me, I am, but I need her to be ready in case a miracle is not in God's plan.  She is very adamant that God is going to heal her.  Oh, how I hope she's right.




Even though all signs point to Trisomy 18 and a very, very short life for Rebecca, we are continuing to pray for a miracle.  We appreciate any and all prayers for her and our family.


20 comments:

Aimee said...

I'm sad that you had no good news, but her little face is so sweet. And I'm sorry that the kids are getting mad, although it's a completely understandable reaction because they care so much. Still praying, my friend.

Diane Teague said...

I am praying for your miracle. Love the pictures of her sweet sweet face. Praying for your children also that God will be up close and personal to them and they will understand what even I cannot.

Wendy said...

Wiping away tears right now after reading this. Still praying for that miracle. Such a beautiful baby girl. I know that this is so hard for the kids to grasp but I am sure they both will work through this in their own way. Praying for strength for you and Dan and understanding for Peter and Sarah.

Madeline said...

She has such a sweet face. Praying for all of you.

Billie Jo said...

My dear Beth...thank you for sharing the precious pictures of your sweet little babe, Rebecca.

I join you and all the others praying for her and for you and for your children...for strength and understanding and peace...

Holding you in my heart, dear friend.

Mari said...

I'm so sorry you didn't get good news yesterday. I'm in tears for all of you. Thanks for sharing those sweet pictures. I'll keep praying for all of you!

Suburban Correspondent said...

I am so sorry to hear this. My friend had a Trisomy baby (they didn't even know until he was born) and the kids have very sweet memories of the 4 months or so that he lived with them. And a photographer friend took beautiful family pictures of the kids holding their brother. I can put you in touch with her if you like.

Rebekah Es said...

Continued prayers all the way around, I can understand the challenge of helping the siblings fully understand what is going on, they very naturally already love this beautiful sister.

Joy said...

Continued prayers! I'm sure everything you are saying to Sarah is going in and she is processing in her own way.

rhemashope said...

Sending all my love and prayers.

Elise said...

Oh, Beth...thank you for sharing your sweet Rebecca with us. I will continue praying for her, for you, and for your whole family.

Kay said...

I have read and re-read this post. I can't come up with wonderful words for you or your sweet family. What you're going through is beyond hard. I'm just so sorry. Your family and your little Rebecca are in my prayers. Hugs!

Erica Saint said...

Beth, I am so sorry. Praying for you and family.

Jennifer Desrosiers said...

I'm sure you have heard this before but Sarah reminded me of it... Parable: There were two farmers who desperately needed rain. Both prayed for rain however only one of the farmers went out and prepared his field to receive the rain..... Beth Sarah is just preparing for rain... Her faith is gods power is strong! Praying for you all! Jenn Destosiers

Busy Bee Suz said...

Praying for Rebecca and your family. XOXO

Amelia Bentrup said...

She is beautiful! And she has a beautiful name! We are praying for you.

Kelli said...

I am praying for you, your family and your sweet Rebecca...

Shelomi Rivera said...

Hello, it's quite sad to read your post. But I believe that if it's the Lord's will to bring your precious one to life, nothing is impossible with Him. Let us always remember that everything happens for a reason and He could never be wrong. All things work together for good to those who love the Lord. Will be with you in prayers.

Debbie said...

Beth, Hugs and prayers to you and Rebecca and your entire family. Life lessons are so hard sometimes and I pray that Sarah and Peter will eventually come to terms with this one. So difficult for all of us to understand these things, but especially our children. Thank you for sharing your experiences with us...sweet Rebecca is so loved! Debbie

Unknown said...

Rebecca is whole in all the ways that count. She is wholly loved and will be her entire life. Maybe that is the wholeness that your daughter needs to be reminded of--how you all are bringing some measure of wholenss to her. God will heal her, but maybe not in this life.