Tuesday, June 15, 2010

P&S #7

Sorry this has taken me so long to write. My mama is doing a good job of spoiling us and the days are just flying by. We had a great time in Michigan and have had a chance to see almost everyone here in Minnesota The pups are enjoying their time too, an almost endless amount of playing fetch and lots of cuddling time.

Last Wednesday. We started off the morning at Children's Hospital in Minneapolis seeing their perinatal hospice nurse coordinator, Jody and a social worker from her office. This was the hardest part for me, going in to see people and talk about the day our baby is born and will most likely also die. Jody was phenomenal. She was a midwife at some point before she took this job so she really understood the birth process and also had experience with mama's and their anencephalic babies. Between Jody and the social worker they offered to help me find a doctor in New Orleans (through their hospice network) that will be willing to work with me as Sammy grows and the pregnancy progresses. They even offered to coach the doctor or midwife and whatever hospice group they can find! They will do this without charging us or our insurance - amazing. Before we left they gave us a little quilt that volunteers made for people utilizing the hospice services and a baby book designed by a mom who found commercial baby books didn't fit situations like ours.

We grabbed a quick lunch and headed to our second opinion appointment. The sonographer was great in a different way this time. She knew it was a second opinion appointment so she was able to talk us through the whole ultrasound explaining what she was doing...I have no frame of reference for situations different than ours, but for us spending that time watching Sammy wiggle and move was priceless. I get to feel him moving every day but to see him was just great. She took lots of pictures!

The doctor (Dr. E we'll call him) that we saw after the ultrasound was great. He had to be in his 70's somewhere, started delivering babies in the 1960's and had experience with delivering anencephalic babies. Dr. B explained that when the "good" ultrasound machines started being used around 1975 anencephaly was one of the first diagnoses doctors could confirm and Sammy is a pretty clear case of this. We then got to spend the rest of our time with the doctor asking about his experience with pregnancies and deliveries of other babies like Sammy.

Next we went to see a genetic counselor. According to the doctors report from our first ultrasound in New Orleans, we had received genetic counseling. At some point during the doctors' explanation he mentioned it was not really genetically influenced and that was *apparently* the counseling. *thumbs down* So it was great to talk to a true genetic counselor about some of our concerns that the other doctors we had talked to could not or did not address.

Again I'll use bullet points to share the new information that we learned:

  • Sammy is measuring right on track - 24 weeks at the time of the ultrasound, still growing (as is obvious by my growing belly) and everything except his brain is functioning normally.
  • Sammy is camera shy! We couldn't get a good profile or face shot because he kept his hands and arms over his face. I was rolling all over on that table trying to get him to put his hands down or take his head out of my hip but nothing worked.
  • Both Jody and the doctor agreed that in their experience organ donation just doesn't happen with anencephalic babies.
  • Dr E has delivered anencephalic babies throughout his career. Mostly because back when he started they had little way of knowing anything was wrong with the baby until he/she was born. He said the pregnancy will mostly likely carry to term, Sammy may be smaller (5-6lbs) at birth, and he'll continue moving and kicking like any other baby before he's born.
  • It seems there is no genetic testing needed? Unless we want extra piece of mind for future babies, they could do some testing after he's born...I'm still confused about this, it's not genetic but it could be? Genetics, poor diet, or siblings procreating will increase chances of anencephely...and chances of reoccurrence are 1% with a folic acid supplement (4-5g as opposed to the 800mg's that are in most prenatal vitamins) for 3-6 months before conception of future babies.

What's next? Return to New Orleans sometime this week. When we get back I'll start searching for a doctor or midwife in New Orleans and then a hospice group that can help us. Hopefully all that can be set up before I start back at school July 6th.

Personally, we're doing ok. I haven't looked up the stages of grief, I know there are around 5? Maybe? And from what I can tell they are not pyramid-like but rather more cyclical...at least I seem to be moving between sad and mad intermittently. I feel like in spite of all this we are able to enjoy introducing Sammy to family and feeling his movement. It's such an unreal experience

I heard this song today, for the first time in forever. I think I went to one of her concerts 8 or 9 years ago (makes me feel old to say that) and used to love this song. Of course it now takes on a whole new meaning and today it helped me get past some anger.

Ginny Owens - If you want me to - http://www.youtube.com/watch?v=QtNzOpKvPfw&feature=related

Thank you for walking with us through this, whether through prayers, emails, or phone calls, it means a lot to us.

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