1 step forward and 10 steps back

Things are not stable, they are not good at all. Last night, Keith went in to see the girls after work (his first day back), and noticed Alyssa's heart rate in the 190's, and her color looking greyish and very lethargic, she's normally quite active. So he talked to the one of the nurses who took a look at her and had the doctor come in to assess. She had lots of blood work done, Xray's and a transfusion because her hemoglobin was low. Her right upper lung collapsed and they diagnosed her with pneumonia so started her on a general dose of antibiotics. All of this came on very suddenly. I was with her all day and her oxygen level was between room air (21%) and 25% and heart rate around 170. Alyssa was pretty stable for 2 weeks...and then this...We call everynight before we go to bed for an update on the girls. Alyssa's O2 requirements kept on climbing to the point where she was on 100% oxygen. We got a call from the Dr. at 12:30 asking for permission to do a spinal tap to rule out meningitis (which they did, thank goodness), then he called back at 4:30 am to let us know they were going to start her on nitric oxide to help increase the pressure support... and potentially put her on an osscilator which is a step above a ventilator. So she was very sick. Today, her oxygen has decreased some, to 78%, and her x-ray looks a little better, but she's still very sick, and it's so hard to see her looking this way, she's just not herself at all, so they stopped feeding her for now. They tried to put an arterial line in her today so that they wouldn't have to prick at her foot constantly for blood to get her gases, but were not successful.


And Jessica, well she still has the PDA, but the cardiologist said the heart looks fine other wise and all of her erratic heart rates was a result of being a premie and her PDA.
The worst news of the day was with Jessica's cranial U/S. There were no bleeds, however she was diagnosed with a PVL, periventricular leukomalacia (something like that), which is a cluster of cysts near her ventricles...basically brain damage, that most likely occured as a result of the twin twin transfusion syndrome in utero, since Jessica was the donor. Things just continue to get worse for the girls. We thought her bowel issues, and her PDA were serious...and they are, but they can be fixed. Damage to the brain cannot be fixed, which was mine and Keith's biggest fear about delivering so early. It's been a really rough day. We don't know the prognosis, all we know is that poor little Jessica will most likely have some form of cerebral palsy. Tomorrow we are meeting with Dr. Vincer to answer our questions and give us some statistics. He is involved with the children in follow up clinic so would see all different types of CP.
All we can do is pray that her PVL does not continue to get worse and that Jessica (and Alyssa) don't end up with severe CP. We just want them to be happy healthy girls...is that really asking that much?