Sunday, October 28, 2012

I take it back...

So I walked in tonight all bummed out, prepared to wait out another week of watching her agitated and in discomfort and not able to hold her. Instead I walked in to find out she had been extubated an hour and a
half previous! No more ventilator!

It seems like every time someone seems to put a limit on Tara she tries to show them up. I'm so proud of her. She is such a little fighter and the strongest little girl I've ever met.

Dr. Schwendeman said that after he told me yesterday about the one week wait he realized that we were performing this balancing act between controlling her breathing but suffering the consequences of the secretions the breathing tube creates and the sedation required due to her agitation. He decided to do an extubation trial soon before I arrived, and she did well and had her best blood gasses yet! She is on full feeds and they are discontinuing TPN IV nutrition.

The doctor asked me if she eats like she sucks on a pacifier. I asked what he meant, and he asked if she gulped. I told him YES YES YES. It has always been a problem but in India they did nothing to help us, and I let her pace herself because even though she gulped she seemed to catch up breathe before her pulse ox would dip significantly. After the 2nd Delhi hospitalization on my own I decided to pull out the bottle at set intervals to pace her, but they told me not to use rice cereal I had brought as a thickener just in case. He said that since that is the case he is not at all surprised that she wound up back in the hospital twice.  He assured me that the occupational and physical therapists will help ensure that we have a way to deal with it, and when I questioned the charge nurse about it she told me a swallow study may be in order and they can use the rice cereal and special nipples to help.

This is one more thing that they did not do sufficiently in India, even though I know they had the capability to do a swallow study and had asked about it but was dismissed because they didn't think it was serious enough.  I'm more mad that they never took a sputum culture, because I suspect the E. Coli had been present for some time.

Would I still have our babies in India? Of can I say otherwise when I have to mostly healthy babies and my dreams have come true. Are you taking a certain level of risk if your children are born very premature and very low birthweight? Yes. Everyone hopes they are not the ones whose children suffer that fate, but you have no control over that outcome. Especially with surrogacy. Don't get me wrong...they can do a pretty good job. But I see now more than ever the differences between US and Indian NICU's and at the highest level of care India cannot compare.

I got to hold her for almost two hours. I sang to her and for about 45 minutes she stared at me wide eyed waving her arms around.  I finally felt like I could comfort her. She is still agitated at times ad gets worked up, but it is easier to calm her. It was far more healing for me than her I'm sure, because the cavern inside me filled in just a bit and my hope of having her home soon lit up more brightly.

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