To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Wednesday, December 11, 2013

Wednesday, December 11, 2013 Update

Tuesday proved to be another eventful day.  Lenah's one good line became occluded when we changed her TPN at her 2:00 hospice visit.  Sooooo, we loaded everyone up and headed to Houston. We met Daddy at our sweet friend Shannon's house so Nana wouldn't have to drive in downtown traffic.  The kids were very excited to visit with our friends as they had not seen them in quite a while.  Nana visited for a bit and then headed to Texas City to hang out while we took Lenah to Texas Children's Hospital.  We arrived at the hospital around 8pm.  Once again we had very wonderful caregivers.  They were able to open Lenah's red line but not the white one.
  At around 2 am, once it was determined that we could not get the white port open with out it being cleared by a wire, we had to make a decision.  We could either be admitted and have the line treated by wire sometime during the next day or go home with just one line.  We opted to go home with the one open line.  We learned that her lines should have been flushed at least once a day with a heparin flush to keep them open.  The TPN is particularly bad about causing clots.  Our hospice nurse took a representative heparin flush with her today to know exactly what we will be needing.  Lenah's particular situation is kind of uncharted waters.  First of all, her condition is pretty rare, and then most babies with similar situations pass away at the hospital after all interventions have been attempted.  So, hospice care for an infant on complete IV nutrition with all of Lenah's congenital problems is even more rare and has been a learning process for all involved.
  Lenah will be 3 months old tomorrow.  She currently weighs 10 lbs and 12 ounces.  How she continues to grow, despite her condition, amazes me. She is such a trooper. She has been very content today and has not needed very much pain medicine- just enough to prevent withdrawal symptoms.  Lenah was on very strong sedation and pain medication while she was in the hospital so we now have to be careful to give her a dose periodically to prevent withdrawal symptoms.
  Lenah had her first shower today. She loved it.  We covered her right leg and picc line with a plastic bag.  Previously, she has only had sponge bath type baths only- which she really didn't like very much at all.  She loved being shower with the hand shower.  She has been resting peacefully since her shower time.  AND she smells amazing.  I can't get enough.


  1. May the Mysteries of OURGREAT Saviour Amaze Us. May the Hand OF GOD ALMIGHTY Reach down and Heal the Wee one Baby Lenah. I PRAY THAT Someone REACH Down from above and Lift her ailment and make her body Well again. Babies should not have to suffer in these illness. She looks so Greatly Peaceful in her pictures.