Saturday, June 29, 2002

Bye Bye, Baby

Viviana Jean Thé was born via emergency c-section on Wednesday, June 19, 2002. She died on the operating table a week later -- Wednesday, June 26, 2002.

Because of all of her pre-birth troubles, we never really expected to meet her. So every day we had with her was a gift. She looked like Geoff. On good days, she'd hold onto your finger with her tiny hand -- the one without the IV in it. Her little feet were ticklish. On Saturday I told her "I love you", and she stretched out all of her limbs.

She had been doing poorly Tuesday morning. The doctors were worried about the gases in her blood -- they referred to her as increasingly acidotic. On Wednesday morning, Dr. Abubakar called -- the cyst in her right lung was expanding. It was cyclical; the cyst would trap oxygen and expand, causing the lung to lose usable tissue, causing them to have to increase the ventilation again. Finally, the ventilator was at its highest setting, so they had to do something to save her.

We rushed back to the hospital, where they were getting ready to take her to surgery. Dr. Chahine would be operating to remove the cystic tissue from her right lung. The dangers would begin when they tried to move her from her warming bed in the nursery -- she was so fragile, they were afraid that even gentle movement would endanger her. They did get her down to surgery without problems, but as soon as they turned her onto her left side, her blood oxygen count started to go down.

Dr. Chahine removed the lower lobe of her right lung and sewed her closed ... while they were operating, she started bleeding uncontrollably. Her blood seemed to have lost the ability to clot. He reopened her right side, in case the build-up of pressure inside her was causing the blood loss. He also opened her left side, in case there was air trapped inside. They eventually got the bleeding under control, and then her heart stopped.

They administered manual CPR to her heart, since the cut was already in her left side. They tried for 15 minutes to get her heart started again. Then they had to give up; longer than 15 minutes, and there would be irreparable damage to her organs and brain.

All of this was explained to us by Dr. Chahine, with Dr. Abubakar and Alan-the-Nurse in the room with us. They had all been crying before they came in. After they were done talking and had given us a chance to ask questions, they offered to bring her in so that we could say goodbye. So that's what happened next.

It was so hard. There aren't words to tell you how much it hurt to hold her -- and even though it hurt, I did not want them to take her away again. They had dressed her in a little white knitted hat and gown, and wrapped her in a knitted pink blanket. It was the first time I'd ever seen her without all the tubes and wires.

We came back home about an hour later. We wanted to be here with my mom, and sleep in our own bed. She's been here with us til today, when she finally had to go home. She's offered to come back and take care of the dogs so that we can escape the area for a long weekend, and we'll be taking her up on that.

Yesterday we had to go into DC to return the breast pump and stop in at the Medical Examiner's office to identify her. Because she died on the operating table, it's DC law that the hospital can't do its own post mortem examination -- in order to protect patients & their family, the exam has to be done by the medical examiner. And because of this, and because we plan to have her cremated (thus no exhumation would be possible, if doubt ever arose), someone had to go there to confirm that she really was Viviana Thé.

Although I went in with Geoff, I didn't see the picture. He did that part without me. Then we came home.

We will not be holding a memorial service. Please don't send flowers ... I know people only want to help, but they would just be a reminder of what we've lost.

I think this will be the last Baby Journal post.

Posted by chrissy @ 04:27 PM EST [Link]

Wednesday, June 26, 2002

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.

Posted by chrissy @ 02:07 AM EST [Link]

Saturday, June 22, 2002

Viviana at 3 days old...

Viviana has surpassed just about everybody’s expectations with her progress since birth. She is still on a ventilator and still has a few secrets that the doctors have not figured out yet (like what is that mass on her left side, and where is the fluid in her abdomen coming from), but they are running tests almost every day to try to figure out what is going on.

Good news -- she is no longer on the high frequency jet ventilator! Before the CT scan they ran yesterday, they put her on a “normal” ventilator, and she adapted to it well. They’ve also been able to reduce the amount of oxygen they have to give her (from 100% to 50%).

They also let Chrissy hold Viviana yesterday. They pulled up a rocking chair for Chrissy to sit in, and very, VERY gently placed Viviana in Chrissy’s lap. The NICU nurses have been wonderful – even though we’ve pestered them with questions and shown up at odd hours, they’re hugely supportive and actively encourage us to spend as much time with Viviana as we can – touching her, talking to her, and holding her.

Chrissy has started pumping milk and is making great progress! The first few times she got a few milliliters, but this afternoon she pumped almost 40 ml’s! While Viviana can’t use the milk yet, they do have a freezer in the NICU that they keep pumped milk in for later use.

Tomorrow (Sunday) is checkout day, so we’ll be packing Chrissy’s belongings up and heading home. The plan for next week is for at least one of us to be at the hospital every day, and for Chrissy to pump milk at home to take in.

We will probably update more often once we’re not living at the hospital, and Chrissy will likely resume her position as main reporter. :-)

Posted by geoff @ 09:15 PM EST [Link]

Wednesday, June 19, 2002

She's here!!!

Viviana Jean The was born via C-section today, June 19th at 12:32. She weighed about 2.5 kilos at birth (5.5 lbs) and is about 15 inches long (these are estimates pending official measurements).

She was immediately whisked away to the NICU (Neo-Natal Intensive Care Unit) where they began to help her live. We visited her about an hour later (they wheeled Chrissy in on her stretcher), and we got to see her, touch her, and adore her.

As of a couple of hours ago, she is still in critical condition, but better than she was when she first came out. They aren't having to ventilate her quite as much, and her blood oxygenation levels are pretty good. The hope is that she will continue to improve to the point where they can move her to a less advanced respirator, so that they can do an MRI on her to see what is going on in her chest, as they have detected a mass in her chest (at the bottom of her right lung) that they can't identify.

Chrissy and I can visit her in the NICU as often as we wish. I was thinking about going up to read her a bedtime story before retiring for the evening (I will be spending the nights at the hospital with Chrissy).

More later...

Posted by geoff @ 10:36 PM EST [Link]