3 little Miracles

3 little Miracles

Tuesday, October 26, 2010

Baby Girl the big DAY with Genetic Councelor {Hospital Notes}

(transcribed from diary I kept in Rachel's NICU space)
Day 5
The genetics counselor came in today to talk to me more specifically about down syndrome otherwise known as Trisomy 21.  We have known for days now that the official test results had come back that she had DS but we hadn't heard the specifics of the findings and what it ALL means and they wanted to wait until I was a little stronger.  Unfortunately David couldn't make it back up to be with me for this and so I faced it alone and physically on my worst day.

I will be honest and say I didn't hear a word she said to me.  I felt like I was in a Charlie Brown cartoon and she was the teacher.  I wanted to shout and her and tell her to go away.  I am devastated that Rachel has Down Syndrome but she has so many other medical issues right now, I can't deal with what I can't change. I have a pile of pamphlets now and even a book on DS but I can't even look at them they are at my side but I feel like if I reach for them it makes all of this so much more real.

These are the notes I did write while she was talking:
Trisomy 21 - not hereditary (so if Rachel wants to have children it doesn't mean she will pass it to her children AND the boys don't need to fear that they can pass it to their children in the future).  All I was thinking as she said this was . . . like Rachel will ever be able to marry and have children now, those dreams are washed away she isn't normal like other kids, those dreams are smashed.
Normally there are 46 chromosomes, Rachel has 47 which is the #21

All I do is sit here in the chair beside her isolette and then once every couple of hours go down the hall to the private breast pumping room for 30-45 minutes and try to pump as much as I can for them to give to my little girl. Every drop is liquid gold, but it is costing me.  I have even been packing a lunch from the RMH kitchen/pantry so I don't have to leave her side all day until the last shuttle of the night takes me back to my little home away from home at RMH.

(transcribed from diary I kept in Rachel's NICU space)

Today was a good day for Rachel

Billy Light will be removed today because her jaundice levels have come down to 11.7

Picc Line being put in today (they have asked that when they prepare to do that I leave for a while, go rest or get lunch).  I hate the idea of stepping away for any length of time, but they say it is too hard on the parents most of the time to watch their newborn go through getting a Picc Line and in Rachel's case it is particularly hard to do.

In addition today they started trying to give Rachel breast milk that I have started pumping.

Heart Rate = green
Respiratory Rate = white

Pulsox (oxygen in blood) = teal


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