HOPE and HOPELESS

Bella has been so very lucky!  Kids with central lines tend to be in the hospital for line infections or breaks, often!  We have been fortunate that Bella has not had a line infection since we brought her home from the hospital in December.  I expect those kinds of  hospital visit! But how do you handle hospital stays that you dont expect?
     The most emotionally draining time in my life has been spent here at the hospital this week!  Those of us with kids who frequent the hospital for one thing or another know what I'm talking about.  We HOPE for the best but slowly as time goes by I've begun to EXPECT the worst.  I'm not being negative, for me its almost a defense mechanism,  A way of coping when things dont go as planned (they rarely ever go as planned).  Today they are planning on taking Bella off the Ventilator. She's been on it a week and although some trial runs have not gone well, they want to SEE what happens.  Part of me is jumping up and down inside to get her off this thing so I can hold her. But... The other part of me is gearing up for the failure that can happen.  Is this fair?  Should I feel this way?  So many emotions and as I sit here watching my baby girl sleep with all the tubes and machines helping her, I feel like there is a tennis match going on inside me heart and they players are HOPE and HOPELESS

Pediatric Stander

We have borrowed a stander similar to this one from her physical therapist! Since noone was using it, they lent it to us. As soon as someone else comes on their case load that needs to try one. So we are hopeful noone else needs to try it, cause it has been amazing for Bella. She can be in an upright position and harnessed in so she is not compressing on her liver or cutting off her airway!! This allows her to use her neck and trunk muscles that she needs to strengthen so that she can someday sit up, stand and walk (we pray she will do these things).  Its absolutely astonishing to me the cost of devices like this! I'm in shock each and every time I see a piece of equiptment that is recomended or suggested by Dr.s and therapists. I mean this one is almost $4,000!!!!  My first and second car didnt even cost that much!!!  Then the fighting and waiting, fighting and waiting for MONTHS with the insurance company to get them to cover some of the cost is exhausting...

Bella in her Therapy Stander (we borrowed from her therapist)

Bella's Medical Condition

We adopted Isabella in January 2010.  We met her for the first time when she was 9 months old.  Prior to us coming into the picture is where I will start this post. 
Bella was born with cocaine, heroine, marijuana, 3 different antipsychotic meds and pain killers in her system and needed to be put on phentanyl and morphine for withdrawls.  She was also born with Gastroischisis (instestines were on the outside of her body).  Surgury was done immediately to put the intestines back in. During this surgery half of her inestines were so badly damaged they had to remove them completely. This caused a condition known as "short gut syndrome".  After her surgery she was unable to come off of the ventilator, she was unable to eat  and was kept sedated. She was ulitimatly sedated for 9 months!  The half of her instestines that was left in her belly had failed completely!  She NEEDS a transplant of the small bowel to survive.  She also has a Spinal cord injury that is so rare, none of the Neurologists at Childrens Hospital of PIttsburgh have ever seen anything like it.  The believe it was caused in utero (while still in her mothers stomach) by an assault. Furthur complicated by seizures she had in the womb from the drugs! 

First Picture of Isabella

This is the photo we saw on the adoption website of  Isabella, we knew nothing other than when we saw this picture we both KNEW it was "Our Daughter" we were looking at

Isabella and Mommy's First Kiss 11/15/09