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06/26/2002 Entry: "Home Again"
I was discharged Sunday morning (6/23), and Geoff & I spent most of the day at the hospital. We left around 4pm to come home, and we were actually here for almost 2 hours before we got the call ... Viviana required immediate surgery, because the fluid in her abdomen was increasing at an alarming rate, and she was bleeding internally.
We knew that she had been doing poorly; she was very pale on Sunday, and her blood pressure had been dropping.
Dr. Chaheen explained that the theory had been that the blood in her abdomen was old; they thought it was from an incident that must have occurred in utero. But she was requiring too many transfusions, and eventually they'd have replaced all of her blood. It was imperative that they find the source of the bleeding and stop it, if possible.
Geoff and I returned to the hospital, prepared to spend the night. Georgetown has a room reserved for parents of very sick children -- it offers 2 double beds, a phone, a sink, and a television. We spent both Sunday and Monday nights in this room.
The worry was that one of her organs was injured. A newborn's organs are too fragile to operate on; if her liver or spleen had been bleeding, there would have been little he could do. When they opened her, they discovered a perforated vein in her diaphragm. They were able to patch it and stop the bleeding, and they drained the accumulated fluid from her abdomen.
While he had the abdominal incision open, Dr. Chaheen looked up into her left lung. He found that what was thought to be a solid mass was actually a cyst formed around an old blood clot. He inserted a second drainage tube into her chest, and x-rays showed usable lung tissue expanding to fill in the newly-opened space. This is encouraging!
Viviana looked much better Monday morning. Her abdomen looked more normal, her colour was back, and her blood pressure and heart rates looked good. They began weaning her from the respirator a bit. They did find evidence of infection, but started her on antibiotics right away.
Then Tuesday morning, our emotional roller coaster took another dip. Vivi's blood pressure started to drop, the CCAM in her right lung started to expand, the fluid in her abdomen began rebuilding ... and because the respirator had been turned down, her lungs began compressing from the pressure of the fluid.
She was transferred back over to the jet ventilator, which she's still on. Apparently after abdominal surgery, it's not uncommon for all of this to take place. There's a honeymoon period, where the baby looks really good ... and then, since nature abhors a vacuum, fluid begins to fill in the empty space in the abdomen. Since her lungs weren't being held open by the forced pressure of the respirator, they began to collapse. And when they turned up the respirator pressure, that caused the CCAM to expand. This is how she came to be put back on the jet ventilator.
With its smaller, more-frequent puffs of air, the jet ventilator can gently reopen her lungs, without as high risk of expanding the CCAM in her right lung. It's also better at reducing CO2 in her blood.
When we left tonight, Vivi's colour was good, and the gases in her blood were slowly returning to normal. The NICU nurses and doctors have all of our phone numbers, and encouraged us to call to check on her as often as we need to.
This is my first night without her; it's hard, knowing that she's so far away. But she'll probably be in the hospital for the next 5 or 6 months, so we have to start dealing with being separated from her.
We did manage to leave the hospital yesterday though -- we ate lunch with a friend of mine, and dinner with some other friends. We also went to Columbia Hospital for Women in the afternoon and rented a breast pump. Although Columbia Hospital closed, the breastfeeding center is still open, and they're planning to move to a store-front on M Street in a couple of weeks. The woman who helped us with the pump also measured me for maternity bras, and at the risk of sharing too much information, I am happily wearing a cotton, non-underwire nursing bra.
The cost of the breast pump rental is actually being donated by several of my local renfaire friends. I am floored by their generosity; this has to be the nicest thing that's ever been done for me. I don't believe I deserve it, and I have no idea how I'll ever express my gratitude, but I want you all to know how much I truly appreciate it.