Coming Home

After 68 days in the hospital Harley is finally home.  About 5 days before coming home they removed her chest tube.  This was a huge relief not only because it meant she was well enogh to remove it but that we could finally hold her more freely.  The chest tube was tethered so you could not move more than about 3 or 4 feet at the most.  Harley did really great just chilling in her crib all day everyday.  If you go to the pictures you can see how happy Sophia was to finally be able to cuddle with her baby.  

Harley still has a drain on her liver and that will eb there for a while (I want to say maybe 6 month to a year if I heard things correctly.)  She will have her NJ tube at least until her first birthday – again based on what I am hearing.  The NJ tube is different from an NG tube as it goes to the jejunum instead of to the stomach.  This is so they can ensure how many calories Harley is receiving daily. 

We have to live a lot more cautiosly than we did before.  We try to wear masks if we are going to be around people and our socail life almost no longer exists for the short term.  No large indoor gatherings. For now we even say no to large outdoor events while Harley gets stronger.  

Everyday she amazes us, we really never thought that we woul get this super sweet and happy baby.  She is the best baby, always easy to smile, talking and just super happy.  She is truely a gift. 

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