Neriyah continues to do well and is in the NICU at Orange Coast Memorial in Fountain Valley. She is off all breathing helps (originally on a ventilator then oxygen). A PIC line was placed yesterday to give the staff more access to her in terms of feedings, blood draws, etc. This will prevent her from having to be stuck as frequently as traditional IV lines only last a short time (1 to 10 days). Specfically, we are praying that she does not get an infection from having the PIC.
We received our preliminary report back on Thursday regarding her chromosomes. She DOES NOT have Trisomy 21 (traditional Down Syndrome). She has all 46 chromosomes!! The testing did not cover another form of Down Syndrome which is called Mosaic Downs nor did it cover small cell replacement. Essentially, what this means is that she could still have Down Syndrome or another chromosomal issue but instead of having an extra chromosome it would be instead due to issues with the chromosomes present. Tomorrow, the Geneticist is coming to the NICU to exam our daughter and we are hoping to get some face time with her to see what testing she recommends.
We are continuing to pray that she has a full-mind. Her body is checking out well...strong heart, kidney's, great breathing, etc. We would love your continued boldness to pray with us for health for all of her systems.
In the last two days, I have had a chance to not only hold her in her bed but to kangaroo with her...such fun to have her skin to skin. Her vitals come into the most beautiful rhythms when she is on my chest. Even if it is only one-hour each day, I LOVE this time!
Off to bed! I will keep you posted as things continue to change.
Hugs!
M
We received our preliminary report back on Thursday regarding her chromosomes. She DOES NOT have Trisomy 21 (traditional Down Syndrome). She has all 46 chromosomes!! The testing did not cover another form of Down Syndrome which is called Mosaic Downs nor did it cover small cell replacement. Essentially, what this means is that she could still have Down Syndrome or another chromosomal issue but instead of having an extra chromosome it would be instead due to issues with the chromosomes present. Tomorrow, the Geneticist is coming to the NICU to exam our daughter and we are hoping to get some face time with her to see what testing she recommends.
We are continuing to pray that she has a full-mind. Her body is checking out well...strong heart, kidney's, great breathing, etc. We would love your continued boldness to pray with us for health for all of her systems.
In the last two days, I have had a chance to not only hold her in her bed but to kangaroo with her...such fun to have her skin to skin. Her vitals come into the most beautiful rhythms when she is on my chest. Even if it is only one-hour each day, I LOVE this time!
Off to bed! I will keep you posted as things continue to change.
Hugs!
M
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