We got the MRI results. I am SO VERY HAPPY to report that Averi's brain is completely normal and is WITHOUT abnormalities or anomolies. Can I repeat myself, Averi's brain is perfect NO brain damage!!!!!!
This is after being told that she had brain damage and it is always way worse than expected when the baby is born. That we should just terminate because her brain was mush, and it wouldn't be any kind of life for her plus the SUA makes her prognosis terminal, and it would just be easier to terminate. In my heart I knew God had another plan.
Either the doctor's opinion and the ultrsound were wrong, OR GOD HEALED her brain.
Even after the doctor told me that her brain was completely normal, he suggested that we consider "comfort care" once she was born. That we may not want to choose a course that may not change the outcome. I didn't understand what that meant so when the doctor explained I was a little irritated. I knew he was basing his opinion of prognosis on just the 15 babies born with SUA and CDH born at UCSF, and not babies with CDH and SUA born nationally like they usually base prognosis on. So I asked " Those 15 babies did they have other issues seen before birth." He said "yes for the most part". I said "Ok then so far Averi is not like those babies." I told him that we were Christians and we believed God had a plan for our baby. That I was going to give our baby a fighting chance, and if she came home with us, or went home with Jesus, we still needed to give her a fighting chance. He then said "That is an ok way to look it at, but then UCDavis may want you to transfer care here."
The question I continue to ask myself is: Why would I want to deliver where they don't seem to want to fight with me for the life of my baby? And they continue to answer with interaction like the above. On three occassions they seemed to be really irritated at the fact that I want to have my care and baby at UCDavis. Maybe the economy?
I have prayed so many times for God to give me discernment and peace regarding the decisions we make for Averi and her care. I have always, and continue to, feel peace with the decision that UCDavis was going to be where I deliver. They have assured me that they have the expertise and equipment (ECMO) they need to care for Averi. I am going to ask all the questions I need to and make sure that this is the case at our next appointment when the transfer of care is complete.
If anyone has any suggestions about what to ask please please please feel free to post them in the comments section. Any comments are welcomed and we thank you for taking the time.
For all who have offered encouragement, support in friendship, and prayers we cannot express how deep our appreciation goes.
I thank God for all of those he has brought into our lives. God is so good!!!!
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Great news on your MRI. I have been thinking of you and praying for Averi. We were told to terminate too when we found out that our daughter was diagnosed with severe LCDH. I told them we are not giving up on her. She is 11 months old and doing great! I will continue to pray for all of you.
ReplyDeleteShame on those doctors who encouraged you to terminate. No wonder you had no confidence that they would do their best to save her. Grrrrr....
ReplyDeleteContinuing to pray...