Ryan headed back to work this morning and Lorissa headed back to Mac again.
Anna was off of her cpap when Lorissa arrived - so we had a full view of her again! Grandma & Beppe both came and were able to see her face for the first time (on previous visits she always had CPAP and/or was under the lights). Lorissa was able to enjoy a good long "kangaroo care" snuggle with Anna too!
Lorissa sat down with the neonatalogist and neuro-surgeon to go over the results from the
MRI. It showed that she has a tethered spine. This means that Anna's spinal cord extends below where it would normally end and it is affixed at L4 with some fat and a cyst around it. She will need neurosurgery to untether the cord around 3 months of age (corrected). It can cause pain to her back or legs - but Anna has shown to be resting comfortably so they do not believe she is in any pain. They are not sure at this point if/what damage this tethering has caused to her nerves in that area. It can affect movement and senses to her legs - although she has shown she can move and feel her legs :). It can also affect bowel control - which we won't know for quite some time. The neuro-surgeon said he was over 99% sure that Anna would walk - so that was very encouraging to hear. (The neuro-surgeon himself is a very big african american man - with the hands of a giant - it is hard to imagine those hands working in such small and sensitive spaces!)
MRI. It showed that she has a tethered spine. This means that Anna's spinal cord extends below where it would normally end and it is affixed at L4 with some fat and a cyst around it. She will need neurosurgery to untether the cord around 3 months of age (corrected). It can cause pain to her back or legs - but Anna has shown to be resting comfortably so they do not believe she is in any pain. They are not sure at this point if/what damage this tethering has caused to her nerves in that area. It can affect movement and senses to her legs - although she has shown she can move and feel her legs :). It can also affect bowel control - which we won't know for quite some time. The neuro-surgeon said he was over 99% sure that Anna would walk - so that was very encouraging to hear. (The neuro-surgeon himself is a very big african american man - with the hands of a giant - it is hard to imagine those hands working in such small and sensitive spaces!)
They also noticed in the MRI that her hips are displaced. So she will be needing to go in a brace for a few months to fix this as hip growth is dependent on proper positioning of the femur. She will be having a hip ultrasound tomorrow and then Lorissa will meet with an orthopaedic doctor to discuss in detail.
Neither of these issues will hold up Anna from coming home with us!
Anna is still tolerating her feeds well and is almost up to full oral feeds! 14 ml and goal is 16 ml - by tomorrow noon she will be at full feeds. They are starting to fortify her diet - just to give her some extra calories to put some fat on her! She is not receiving any nutrition through her picc line anymore - but they are keeping it running until after her VCUG (urine dye test - to figure out her kidney issue) on Wednesday.
Our Little Alien Baby
Late in the afternoon - bloodwork from Anna's bilirubin came back as high so she was put under the lights again. Also - her respiratory rate was staying too high - so the respiratory therapist decided to put her back on CPAP. So she is all covered up again! The RT did say that Anna was a good candidate for high flow therapy, so we will see what the decision is in the morning regarding that. It is better she doesn't have to burn too many calories trying to keep up breathing - as her biggest job right now is to gain weight and grow!
Please continue to pray for this little girl that she will continue to grow! Also for us as we try to balance time between Anna and Jude & Kaelyn.
"But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."
Isaiah 40:31
Praying for you all!
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