I did a little bit of research on Thursday to help prepare my head and heart for the upcoming meetings - but I was a mess Thursday night. I called my sister, the researcher, to talk to - through my tears and often angry voice she was able to help me understand and calm down. That was a tremendous help prior to the meeting on Friday.
So what did we learn ... first I learned that I have a cute hair cut ... when we checked in, one of the nurses made a comment about my hair cut, which by the way was not clean and pulled back in a barrette - not what I would think of as a good hair day. BUT nice to hear none the less, when I was feeling very unsure and vulnerable. Turns out that nurse, was the Grief Nurse we talked to later.
To begin, we met with the genetics counselor, we had a lesson on DNA and how chromosomes are created. We found out that our type if Trisomy 13 is sporadic. Neither of us carry an extra 13, and in future pregnancy there is very little chance to have it happen again. That is good. We also learned that the extra 13 showed up in all of the cells taken during the amnio, which means Jeremy has an extra chromosome 13 attached to all cells. There are different types, where the extra 13 might just attach to a few cells. Unfortunately in our situation, that creates a very poor prognosis. We talked more about what was seen on the utlra sound and all the abnormalities are a direct result of the extra 13.
Then we were able too talk with a nurse that specializes in helping parents prepare for the birth and death of a newborn baby. (this is the nurse that liked my hair. So immediately I liked her.) She was great, because of the extra 13, the length of Jeremy's life is not known. We will create multiple plans depending on what happens. We will make all the plans prior to the birth. Our goal is to go full term, and have a live delivery. (still birth is a possibility) She told us about a program called Now I lay Me Down to Sleep, photographers that will document Jeremy in the hospital - they are professional photographers, that provide this service for free. (UNBELIEVABLE!) The nurse has made it clear that she wants to provide Aaron and I with all the wonderful things that happen when a baby arrives and help up to be prepared for that day -with all the hard choices already made. She will help us to create a plan with no regrets.
Finally, we talked to a Neonatalogist, she was able to explain in more detail about the heart abnormality, what the NICU is like, and would be honored to be the pediatrician for Jeremy. She was great at explaining the medical jargon for us to understand.
Aaron and I left the office emotionally exhausted, we had cried, laughed and hugged over the 2 hour meeting - but we also felt very peaceful and trust that we are in a place that can help all three of us - and our friends and family through out this circumstance. We are clear that some days will be great and others very hard.
Although the prognosis is poor for the natural life of Jeremy - Aaron and I continue to walk in faith that we serve an Awesome God, who does perform miracles. While recognizing that we already have one miracle, with Jeremy now.
This morning I read Luke 18:1-8, the Parable of the persistent Widow.
(this is 6-8a) 6 And the Lord said, "Listen to what the unjust judge says. 7 And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? 8 I tell you, he will see that they get justice, and quickly.
prayer: Heavenly Father, thank You that You are a God who is moved by persistent prayer and You hear me when I cry out to You day and night. Because of that I will always pray and not give up.
A number of family and friends have reached out to Aaron and I , and expressed that they do not know what to say - that is OKAY! Please do not feel like you even need to say anything - if you are struggling to find the right words - maybe just a hug or an I am thinking of you is fine. I trust that if there is something important the God needs for you to share with Us - you will know. Aaron and I understand that what seems to be a very personal situation extends to our family, friends, co workers and beyond. We will all have hard days and good days - continue to be faithful in prayer and Trust God - he does some pretty amazing things and I look forward to seeing how he handles this one.
GRACE AND PEACE!