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.