Off the oscillator...

The IWK telethon raised over 5 million dollars last weekend, thanks to everyone who contributed!!
Since then, Jessica and Alyssa have remained relatively stable. Alyssa was taken off the oscillator on Tuesday and put back on the regular ventilator. She was doing well for the first 24 hours, so I was able to take her out for kangaroo care on Wednesday. There is no better feeling then holding your baby against your chest and seeing them so calm and happy. She's been opening her eyes a lot more lately. Yesturday she was looking all around at Keith and I, so nice to see her looking in our direction. With good news, of course more bad news. Another X-ray was done recently, and her right lung which had collapsed and was getting better, has re-collapsed, and is completely full of secretions. She has thick yellow gobs being suctioned every 1/2 to an hour, and chest physio being done regularly which of course she loves (no, she hates)!! Poor thing...she can barely breath with her tube getting all filled up. Last night I thought I was going to have a heart attack as her oxygen saturation in her blood dropped to 15 % as the nurse was bagging her (normal is between 85-95%), and her color was extremely blue. She is still on lots of antibiotics for the pneumonia, although the neonatologist mentioned today that if major changes are not noticed on X-ray by the end of the weekend, they may have to look into dysfunction with the actual lung...hopefully not, and the infection will be better soon.

Jessica has also been stable, however since my last entry, she was put on the oscillator because her CO2 was extremely high. She didn't get as swollen as Alyssa because she wasn't on the paralyser medication constantly like Alyssa was, she just gets it as needed. Today they are going to try her on the conventional ventilator to see how she does, but warned me that she could go back on the oscillator. She's still on a lot of medication for her blood pressure, which worries me, because she needs a lot of perfusion to her bowel area to heal, it would be nice if she could keep her BP up on her own. We had a chat with Dr. J the other day about the "overall picture" of Jessica which was very upsetting. In rounds daily, the team goes over each system of the body individually...so I felt I needed to hear the whole story, which I had an idea about, but you can still never quite prepare yourself for. Like Dr. V had told us a couple days ago, because of Jessica's PVL, she has a 75% chance of developping CP, and as Dr J told us, the NEC can actually worsen these numbers. She told us she is very sick, with her PVL (brain damage), BPD (lung damage), NEC (dead bowel tissue), and other issues that are there, but less serious as the last three (and all mainly as a result of the TTTS). SO...she HAS to and will fight this NEC which is very possible, but a long road ahead of us... her bowel WILL heal, and because she's been so unlucky to get every possible preemie problem you can develop (even when "the book" says only a 5% chance of developping NEC, and 5% chance of PVL, etc...)....she will be the lucky 25% to either NOT get CP, or get a mild form if any. This is my positive thinking, which took a good couple days to get here. After meeting with Dr. J...initially all I could do was cry and picture the absolute worse, because she talked about if Jessica ever got an infection like Alyssa, she would most likely not survive, and if she did could be very disabling for her in the future and Keith and I may have to make decisions about continuing treatment. I dont' think I could ever stop treatment...because your really don't know what the future will hold. The Doctors have to give you all the information, but it doesn't mean that statistics are always correct. I've met other mother's here, two who were in my situation over 2 months ago. Both mothers delivered around 25 weeks as well, and had 1 pounder babies, and have been through a lot...they don't know what the future will hold for their babies, but right now, they are feeding, have had multiple surgeries and look like "normal" babies who they love like crazy. I would never love any one of my girls any less if they had any type of disability, I just want them to have happy good lives. Every day I love them even more.
Time to go back and see them, and see how Jessica did off the oscillator.
Please keep praying!!