Avery's Journey

It is with much sadness that we write this entry today.  Avery is still doing well and we are looming closer to the next set of ALL CLEAR scans - not to worry....today we are sad for another reason.

We had our 2nd sonogram last Friday and some issues came up on the pictures.  We were referred to a Perinatologist for further tests and on Tuesday of this week we went in.  They performed a higher level sonogram with a more experienced technician and they were able to confirm that Baby C has a double cleft lip, which most likely means a cleft palate as well.  Devastating as it was hear that, we were in for a much worse diagnosis.  The Dr came in and indicated that not only did they see the cleft issues, but she was also seeing an enlarged gall bladder, kidneys and issues with the heart.  She also noted an additional finger on one of the hands and was unable to tell if the other hand had any concerns.   They did an amniocentisis to pull fluid from the uterus and sent it off for chromosome testing.  We knew at this point this wasn't a good thing and asked for the truth from the Dr.  She told us that with that many obvious issues on the sonogram we were most likely looking at a chromosome syndrome that was not survivable.

Yesterday the amniocentisis confirmed the Dr's suspicions and the baby was diagnosed with Patau's Syndrome.  The condition is not survivable.  It was also discovered that the baby is actually a Boy.  

Another one of those "worst things for a parent to hear/deal with" and believe us we are pros at this now.  It doesn't get any easier.  I am a day shy of 22 weeks and that in itself provides us ridiculous obstacles.  Our options were to wait until the baby passes and then have him removed, as most die prior to birth or within days after.  Or we could choose to terminate the pregnancy.  Our preference was to terminate as soon as possible to avoid further complications or to grow more attached.  However, in the state of KS there are laws that regulate when and how things like this could be done and we have missed the cutoff - medical reason or not.  Rather than go out of state for the procedure we have decided to have our Dr induce labor and I will deliver the baby in the next few days.  We will go through labor and push like normal, but because he is still so young he will not survive once out of the womb.

 This is absolutely devastating for us right now.  We are struggling to keep it together each day and we appreciate everyone giving us some space and time to absorb this ugly mess that we are once again finding ourselves in.  I am looking hard for the message or the reason or the purpose behind this and am coming up empty handed...It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us.   We'll get through it I know, but I am reminded with each kick that he is still there with me and that is a haunting feeling I don't think I will ever forget. 

Jenn