Saturday, June 29, 2002
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
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 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
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]
Saturday, June 15, 2002
Geoff again - I was not at the hospital when all of the following happened, so I am relating it second-hand from Chrissy and Judy's retelling. Hopefully all the important details are right. :-)
At 3:30, our buddies Dr. Lewis and Dr. Deering appeared with the portable sonogram unit to check on the baby. They started with the lungs, and there is little fluid left around the lungs. The C-CAMs are very visible now (this did not appear to concern them), the lung development probably means the steroids have done their job.
The baby's femur is measuring at 34 weeks (even though Friday started week 32), and she is (still) breech.
They then looked at the ascites in the baby's abdomen, and the amount of fluid has GROWN. The Drs also saw soft-tissue build up all over her body, and they said she would look "puffy" were she to be delivered now (the comparison they used was the Michelin Man). The likely explanation for this is that her kidneys are not functioning. Chrissy's AFI (Amniotic Fluid Index) has also gone DOWN. It is now around 5 (remember from the last post that it should be in the 8-25 range).
At this point Dr. Lewis looked pretty worried and unhappy. He said he needed to talk to a neo-natologist about our case, and would return shortly. The feeling that Chrissy and Judy got was that he might want to deliver her VERY shortly via Caesarean Section.
Some uncomfortable time passed.
He returned with two of Georgetown University Hospital's neo-natologists. Neither was Dr. Keszler that we had met with before, and neither Chrissy nor Judy can remember their names. They went through the full sonogram again. The female neo-natologist pointed out that the baby's heart was still displaced and that one of the C-CAMs in her lung was pressing up against the heart (for those that are worried, I will note here that we have been VERY aware of the baby's heart rate while we have been at the hospital, since it is the back-beat of Chrissy's room, and it has not varied significantly since the first procedure -- it is still in the 135-160 range).
Overall, the neo-natologists were much more reassuring than Dr. Lewis expected them to be. They have successfully treated babies that have much more severe ascites, and they felt there was no immediate danger that would require her to be delivered in the very-near future.
The current plan is to try to keep Chrissy pregnant for two more weeks, monitoring the baby throughout, and then deliver her via Caesarean.
PS: Somebody pointed out that the link I gave for Nifedipine (Procardia) in the last update was buggy. The correct link is here.
Posted by geoff @ 05:45 PM EST [Link]
Wednesday, June 12, 2002
Dr. Lewis showed up around 7:45 Wednesday morning to do a sonogram. He started off by looking at the baby's chest area, and was happy to see that the fluid had not re-accumulated. He showed us the catheter in her chest and the small pocket of fluid around it. The lungs looked good. The CCAMs are still visible, but the fact that the lung was still expanded was VERY encouraging.
He then spent a lot of time looking at the baby's abdomen, and noted that the ascites, while smaller, were still present. He also measured Chrissy's level of amniotic fluid. Previously, the amount of amniotic fluid in her uterus had been quite high (AFI of circa 28 cm before the first procedure), but today, it was reading at 8 cm.
Because ultrasounds are two dimensional, and because babies move so much, it is difficult to measure three-dimensional volumes (of say, liquid), so what they do in the case of amniotic fluid is divide the uterus into four quadrants, and measure the longest distance of the patches of visible amniotic fluid. The four measurements are then added up to provide the AFI (amniotic fluid index).
According to this page, the AFI should range between 8 and 25. Previously, we were HIGHER than the “normal” range, and now we are at the LOWER end of the “normal” range. I suspect that the AFI is supposed to remain relatively constant during pregnancy with gradual variations and should not jump so wildly in a couple of weeks.
The concern is that the lack of amniotic fluid will cause pressure on the umbilical cord, which can cause heart failure. One of the symptoms of heart problems is the development of ascites. There do not appear to be any other indications of heart problems other than the ascites, and her heart appears to be beating fine. Dr. Lewis said that he would be back on Friday to run another sonogram.
We asked what the implications of this were, and how much longer Chrissy would have to stay. Dr. Lewis said that unfortunately, because there is a risk of heart failure, they would need to intervene very quickly if the baby’s heart rate suddenly dropped, and therefore her heart rate would have to be monitored constantly. This means that Chrissy will have to remain at the hospital possibly for the remainder of this pregnancy. They will probably perform an amniocenteses at 35 weeks (5 weeks from now) to get a feel for how the baby’s lung development is progressing.
We are pretty stressed about this for many reasons. The prospect of spending 10 weeks in bed rest is not appealing, nor is the probability that she would have to be moved down to the Maternity ward on the second floor into a shared room.
In other news, the hospital food is of the expected quality, and the hospital chef’s vegetarian range seems to be limited to a starch accompanied by a few heated canned vegetables. Luckily, she is NOT on any sort of restricted diet, so we are likely going to have to supplement her diet with home-brought foods.
Physically, Chrissy is feeling MUCH better today. Her contractions have dropped from a high of seven or eight per hour to zero per hour, so they have taken her off the magnesium sulfate, and she is now taking Nifedipine (Procardia). She has managed to keep food down several times (though her appetite is not quite back to its pre-procedure levels yet), and she is now allowed to go the bathroom again, but she isn’t allowed out of bed for any other reason.
I'll try to update again on Friday after the next sonogram.
Posted by geoff @ 11:01 PM EST [Link]
We got to the labour and delivery floor a little before 9 AM on Monday, and they quickly got Chrissy prepped to go into the OR. Monique was her nurse again for the procedure (she was actually the nurse that first saw us at the last procedure as well!), and we recognized most of the other folks as well: Dr. Shad Deering, Dr. Maria Canter, Rosemary RN, Dr. Green (the anesthesiologist), and of course, Dr. Kerry Lewis.
I sat down in the waiting area, checked my various voice mailboxes, and caught up with a couple of folks. Very shortly thereafter, though, Dr. Lewis appeared, in great spirits, and he told me that the procedure had been a success! The baby was in exactly the correct position for the procedure, so they didn't have to paralyze her, and it took two tries: the first catheter they inserted went in too far (and is now benignly floating around in her chest), and the second catheter stayed put and started draining fluid. A post-op sonogram showed that the lung had expanded even more than last week! Head RN Lynette commented that when she ran into Dr. Lewis later in the day, he still had a big grin on his face. :-)
One of the risks to this kind of procedure is the possibility of pre-term labour, so they immediately started Chrissy on a Magnesium Sulfate drip at a slightly lower dose than last time (2gm/hr vs. 2.5 gm/hr) and Indomethacin (Indocin). The night after the surgery was not easy – they gave her anti-nausea and pain medication medication, but she was unable to keep anything down at all. We probably got 3-4 hours of sleep.
Tuesday morning, Drs. Canter and Deering came by for a sonogram and it confirmed that the lung was definitely doing better.
Chrissy had a couple of visitors in the early afternoon – Annette came by with her fiance’s mom to deliver a “care package” that a group of the wenches put together. And what a care package it is! There are balloons, colouring books, crayons, colouring pencils, video games, a box of Godiva chocolates, a gift certificate for Toys’R’Us, and many things I’m sure I’m forgetting. The visit and the gifts definitely made her day. :-)
During the day, Chrissy had a lot of pain (which they tried to stay on top of with percocet), and felt very, very nauseous (which they kept on top of with Zofran). I brought Judy (Chrissy’s Mum) to the hospital to visit, and we kept her company during dinner until about 9 PM, at which point we had to return to the house to rescue the dogs. Another bright point in the day is that Kate was her nurse for the night. I think she’s officially our favorite nurse (we’re trying to book her ahead of time for the birth in August :-), and when Chrissy got a craving for an ice-cream sandwich while we were watching “Third Rock from the Sun” on TV, I also picked up a Slurpee for Kate bagful of ice cream treats at 7-11 for the other nurses. This made them very happy.
Posted by geoff @ 01:34 PM EST [Link]
Saturday, June 8, 2002
I'm not supposed to be down here. Geoff's out getting a little bit of food for our little bit of fridge, and maybe some movies & popcorn. I figure he won't notice this update til Tuesday. ;)
So I'm home for a little while at least. They let me leave this a.m., after Geoff promised to return me on Monday morning so that they can start all over again. So here are a very few Chrissy-recollections for your viewing pleasure:
*The man who gave me an epidural on Wednesday was very nice, and scratched my nose for me during the procedure even though I didn't have $5 or a pocket to carry it in.
*The baby won't hold still for anybody, even when they temporarily paralyze her. (I wonder where she gets her difficult-gene from?)
*When someone sticks a needle through your lower abdominal muscles, it leaves quite a sting.
*Labour & Delivery Ward nurses are the nicest people in the universe, even when they refuse bribes of ice cream in order to let me off the catheter early. (YUCK!)
*Three days without being allowed to shower is three days too many.
*The Labour & Delivery ward is much more modern than the Maternity Wing, where you end up after you've had a baby or while you're waiting to be sent home from the hospital from a mid-term procedure like mine.
*There is a Chinese restaurant in Georgetown that delivers Ben & Jerry's and stays open til 2:30! I wasn't forced to order from them, because Geoff heard the steely sound of my voice and delivered the goods when he reappeared that night. (Which night? Don't ask ME -- I was on drugs.)
**
Monday at 9am Dr. Lewis & team will try again. The big problem last time seemed to be that I have too much amniotic fluid, and trying to put the catheter into Baby was like trying to poke a fork into an apple-in-a-barrel. So they'll remove some of my amniotic fluid first, and then drain her chest cavity again, and then try to put the catheter in.
Taking away too much fluid will put me *more* at risk for pre-term labour. But knowing that her lungs CAN puff up to fill the space is a relief, because it means if she does arrive early, they have a better chance of helping her.
I'll probably be at the hospital from Monday through Thursday, and after I'm home I don't know if I'll be allowed to touch my computer again for a while, having already violated the no-going-downstairs protocol so early this time. ;)
I'll add my thanks to Geoff's for all of the good wishes we've received -- it means an awful lot. So thank you!
Posted by chrissy @ 08:35 PM EST [Link]
Thursday, June 6, 2002
Chrissy is feeling MUCH better. I've come home to drop Judy off, and when we left the hospital, Chrissy was looking much more her old self; she's managed to keep some food down (numerous bites from a tasty veggie platter) and would REALLY like some ice cream. When one of the nurse's threatened to give her the number of a nearby chinese place that would deliver the goods, I had to promise to bring some Haagen-Daaz back with me. :-)
They've backed off the magnesium drip now that the contractions have subsided significantly. The plan is still for us to spend most of tomorrow at the hospital for monitoring.
I'll be back tomorrow to pick Judy up and I'll update again then. Thanks for all the well wishes!
Random Notes:
Our kitchen fridge decided to stop working today. Judy had to deal with a mess that I can't even imagine. :-( We have a small fridge that I snagged from my old office, so we have somewhere to put staples like Milk, but the timing could have been better...
Posted by geoff @ 10:43 PM EST [Link]
I'm back home from the hospital to take a quick shower and pick up Judy (Chrissy's Mom) to take her for a visit at the hospital.
The short of it is: the doctors were NOT able to insert a catheter into the baby's chest. They WERE able to aspirate some of the fluid (35 cc's), and the left lung, which previously had only been a sliver of grey in the sonograms, puffed out a bit, which is encouraging.
Chrissy is still at the hospital, and will be there AT LEAST until tomorrow (Friday). The big worry now is that due to the procedure, Chrissy will go into pre-term labour and deliver the baby early. This would be bad since the baby's lungs aren't yet ready for our side of the tummy. She IS having contractions, and they have given her several medications to stop them. The contractions are not strong enough for Chrissy to feel them, but they can pick them up on the Fetal Monitor that Chrissy is strapped to 24 hours a day.
There were pain issues, keeping-food-down issues, and discomfort issues (one of the medications was introduced by the nurse as "this will make you feel like crap"), but those are subsiding, and the two of us were finally able to get some sleep around 10 AM this morning.
Everybody at the hospital has been WONDERFUL. The nurses don't seem to get tired of me going up to the front desk to announce every little change in Chrissy's condition and Dr.'s pop by regularly to see how she is doing.
Game plan as of now is: give Chrissy steroid shots to help the baby's lungs develop quicker; do another sonogram tonight to see how the lung is progressing; possibly aspirate some of the copious amniotic fluid that maybe contributing to the contractions.
Also, we have an appointment with Dr. Lewis on Monday to go back and check on progress. Depending how things go, they may want to repeat the procedure to insert the catheter into the baby's chest again then (we are not looking forward to this possibility).
Random Notes:
Comfort stuff: sleeping in delivery room chairs that should but won't fold down is only slightly more comfortable that falling asleep in those plastic chairs at bus stations.
Weird stuff: it is very strange to be the ONLY couple in the Labour and Delivery wing of the hospital who is waiting for their contractions to SUBSIDE. Other expectant fathers and I trade smiles on the way to the ice machine, but our priorities are a little bit different at this stage of the game.
Neat stuff: as well as draw a diagram of the baby's heartbeat and Chrissy's contractions, you can hear the baby's heartbeat through the fetal monitor. There's nothing like falling asleep to the sound of your baby's heart.
Posted by geoff @ 02:14 PM EST [Link]
Tuesday, June 4, 2002
I spent most of yesterday's business hours attempting to get a referral for today's appt. with Dr. Lewis. When we left the house this morning, we still didn't have authorization from the insurance agency. When we arrived at Georgetown Hospital, the nurse told us everything had just been taken care of, and started filling out forms to make Dr. Lewis my primary care OB. This came as a surprise, since Geoff & I hadn't actually made that decision yet.
But it makes sense. Since Dr. Lewis is going to be the one actively taking care of my complicated baby, it's silly to keep seeing Dr. Match. His office was mostly just there to fill out referral paperwork; switching to Dr. Lewis will eliminate that.
So this afternoon I need to call Rhonda and Dr. Match's office and let them know about the change.
When we saw Dr. Lewis, he started out by telling us the reason he wanted us in today was to talk about tomorrow's procedure. Geoff and I both stared at him -- "Tomorrow??"
So it's happening tomorrow.
At 11am, we'll arrive at the hospital. We'll talk to the anaesthesiologist, then I'll be hooked up to an IV and an epidural, and taken to the operating room. Dr. Lewis didn't think Geoff would be allowed in the operating room, but we can talk to the anaesthesiologist about it tomorrow.
The entire procedure, which probably won't begin until 2pm, will take between 2-4 hours.
They'll use a needle to inject a paralytic agent into the umbilical cord -- that will make her motionless for about an hour, and then begin to wear off. They'll also take a blood sample while they're in there. Then they'll use a different needle to put the catheter between two of Baby's ribs. While they're doing that, they'll aspirate the fluid, and the lab will test a sample to see what type of fluid it is, and whether there's an infection present.
The catheter is a small rubber tube; as they withdraw the needle, the end inside of her chest will curl up to act as an anchor. The outside part will stay straight. The idea is that the pressure inside her chest will force the fluid to drain, and then her lung will puff out to fill the now-empty space.
There is a 30-40% chance that this *won't* happen. If her lung is unable to decompress, she probably won't survive after birth. This operation is her best chance of survival though, because if her lung CAN decompress, they won't have to aspirate the fluid after birth -- they can put her directly on a respirator if she needs it.
You may not see another update until the middle of next week or so, because I'll be on bedrest until then. We'll go back Friday for a sonogram to check on her, and then we'll have another on Tuesday. After that, we'll probably have them once a week.
My mom is probably going to come over tomorrow night, and maybe stay here Thursday.
Most of the folks reading this have our phone number, so you can call if you want to ... otherwise, if you have questions, please email Geoff.