Thé Archives: May 2002
Friday, May 31, 2002
Last night a nurse from Georgetown Hospital called to tell us that Dr. Lewis would like us to meet with Dr. Keszler today. Since our schedules are theirs to command, this is what we did.
Dr. Keszler is the head of the neonatology unit. These are the folks who, after the baby is born, whisk her away to NICU (Natal Intensive Care Unit) and do what needs to be done in order to let her breathe. We didn't get much *new* information from Dr. Keszler, but it was still a very worthwhile visit. He talked to us about the risks involved in the surgery which will happen next week, and we agreed with him that these risks are outweighed by the potential benefits. He explained that the catheter they'll be inserting won't pose any difficulty in a vaginal birth — in fact, one of the risks is that it may fall out on its own before she even comes to term, or she may pull it out herself. If this happens, it won't pose any threat to her or to me. We may see her waving it around in a later sonogram. If it does come out either before or during the birth, she'll probably need to have it replaced as soon as she's born.
We asked him about the likelihood of a c-section, and he answered that he doesn't believe it will be necessary. It won't help HER any to be removed surgically; babies delivered via c-section often have problems of their own, including fluid in their lungs (which would have been squeezed out during vaginal delivery), jaundice, and heart problems. We don't want to add to her troubles at all -- so there will not be a scheduled birth.
He showed us the NICU nursery -- this is the first we've been able to go into. The babies there were mostly preemies, and there was one who was on a respirator. He explained to us the different equipment. They have 2 different types of respirators -- one is a baby-sized "regular" respirator, and the other is a high-frequency unit that provides lots of smaller breaths, rather than fewer bigger ones. They also have an ECMO unit, and they know how to use it.
Just outside the doors of NICU, Dr. Keszler pointed out the high-risk delivery room. That's where I would end up -- that way, whatever her condition at birth, they can be ready to help her.
All of this basically adds up to the conclusion that we'll be delivering at Georgetown. It just makes more sense to deliver her in a place where she can be treated right away. Children's Hospital is wonderful, and if they had a maternity ward I'd be registered there already — but they don't, and we don't have $3 billion to endow one. Delivering at Sibley would be nice, if this birth weren't promising to be as complicated as it is. I'd love to be in a comfy, low-lit room with relaxing music and a Jacuzzi bath ... but all of that is really just icing. And I'd trust them to deal with smaller issues than she has, and transport her to Children's. But with Georgetown, we don't have to worry about what will happen between birth & respiratory support.
Posted by chrissy @ 05:36 PM EST [Link]
Wednesday, May 29, 2002
We met with Dr. Kerry Lewis at Georgetown Hospital today.
Our appointment was for 9:30, and due to the unpredictability of traffic going into DC in the morning, we left at 7:30, and arrived around 8:40. At 9:15, a nurse came to find us in the waiting room and told us Dr. Lewis was running late. We were finally ushered into an office at 10:30.
We had the film from the 4/2 and 4/30 sonograms from Washington Radiology with us, which Dr. Lewis looked over. He said that to get a real handle on where things were at, he would have to take a look at the baby himself. He called the sonogram desk and secured us a spot for 11:30.
The question he was trying to answer was whether the pleural effusion was causing enough lung compromise to make it worth the risk of performing some form of in-utero operation.
During the sonogram:
1. He noted the CCAMs and the fluid.
2. he saw Ascites (the presence of excess fluid in the peritoneal cavity) in her abdomen — this had not appeared on any other sonogram. He said that this was a sign of possible heart problems.
3. He asked if Chrissy was diabetic because the baby is measuring big — for some measurements, the baby is measuring in at 32 weeks! We told him that yesterday she drank the glucose-laden flat orange soda at Dr. Match's office, and we should have the results tomorrow.
Based on what he saw, he thinks that we should go ahead and have a procedure whereby:
1. the baby would be temporarily paralyzed (via an agent introduced in the umbilical cord) to prevent movement during the procedure
2. a pig-tail catheter would be inserted into the baby between two of her ribs to drain the fluid
He wants to talk to a neonatologist and some of his other colleagues, and will get back to us tomorrow, or at the latest, Friday. He would really like to perform the procedure next week, and have us come in Monday for an explanation of the surgery and an introduction to the equipment that would be used.
We called Rhonda when we got home and told her what was going on, she said that she would try to put Dr. Hartman the pediatric surgeon in touch with Dr. Lewis so that Dr. Hartman could give his perspective on the baby's condition and the risks involved. We also decided to cancel tomorrow's scheduled sonogram, as it wouldn't have provided any more information than the one we had today. Our next sonogram is scheduled for June 11th.
Posted by geoff @ 04:21 PM EST [Link]
Sunday, May 26, 2002
Last weekend Geoff & I took the maternity ward tour at Reston Hospital, in Northern VA. Today we went on a similar tour at Sibley Memorial in DC.
Of the two, I much prefer Sibley. The facilities are much more modern; I could picture myself delivering there. The woman giving the tour was not shocked when I asked about intensive neonatal care & respirators for babies who will be transferred to Children's Hospital. (The Reston nurse couldn't get over how calmly I asked the questions. And she really couldn't answer them. And the maternity ward nurses were unfriendly.) Sibley has a neonatalist *in house* 24 hours -- not just on-call. So no matter whether my delivery is scheduled or spontaneous, someone WOULD be in the room during delivery to get her stabilized as quickly as possible.
The idea of transporting her is still scary, but that's something that Geoff & I talked to Rhonda about last week. The transport team would come from Children's, and they are very experienced at moving infants with respiratory problems.
We still are going to tour Fairfax Hospital and Georgetown, but if we chose to go to either of those places, we might not be able to transfer the baby to Children's after birth. Fairfax and Georgetown both have extensive NICU facilities, and may wish to take over the management of my pregnancy themselves.
Our focus will always be on what's best for the baby. But I already know & trust the dr's at Children's Hospital -- and that goes a long way.
Posted by chrissy @ 11:42 PM EST [Link]
Thursday, May 23, 2002
This afternoon I thought, self, you haven't had much good to say about anything in a long time, and it's silly not to have more joy in your life.
Today I had 13 vials of blood drawn, and I went to the chiropractor. There's the obligatory health update. ;)
Sometime around 5pm, I decided to go out on the deck with a book, a glass of water, and the dogs. Geoff stayed inside; he still had work he needed to finish. I read for possibly 10 minutes.
One afternoon a few weeks back, the little girl from the house next door approached our fence and asked questions about the dogs, so I invited her over to play with them. After much reassurance -- "they will bark; they will jump; they will NOT bite" -- she and her mom came over.
The little girl is Jocelyn, and her mother is Dora. Dora doesn't speak much English, so she just sat on a bench and watched Jocelyn play. Geoff was out there with me that day, and the two of them threw balls for Jake for over an hour. Jake had the best time ever. :) Sharou's not one for chasing balls, so he spent most of that time on the bench next to me.
Today when I went out I could hear kids playing next door, but didn't pay attention til Jake went over and started barking. Jocelyn was barking back ... when I couldn't stand it anymore (I'm such a grinch) I looked over and said, "Hi Jocelyn!"
"My mom said I could come over if I stayed in the yard, and not in the house." she informed me. (She sounds just like Frances, I swear she does.)
"That's good!" I said. "Do you want to come play with the dogs?"
"Today's my brother's birthday."
"Are you having a party?"
"We didn't invite anyone. It's just us. And my cousin and my cousin and my cousin and my cousin are here. And my aunts and uncles."
"That's very nice!"
"Can I come play with Jake?"
"Sure! But you have to come through the house into the backyard; if I open that gate the dogs will run out."
"Ok!"
So Jocelyn and 3 of her cousins descended upon the yard. For just over two hours, they threw balls for the dogs, shrieked, ran, chased the dogs, picked up & carried the dogs, and generally were happy excited little girls. :) It was wonderful.
Jocelyn pointed out that I wasn't wearing shoes. "I know," I said. "Your feet look ..... white." she said, consideringly. I laughed -- "They match the rest of me." She wondered if she could bring the yellow duckies out of my bathroom for the dogs to play with. "No," I said, "they'll eat them!" "Are they candy?" she asked. I couldn't help laughing. "No, they're made out of this latex-rubber stuff. They're bathtub toys for babies." "Oh," she said. "Are you going to have a baby?" "Yes, in August."
Sometimes the universe has perfect timing.
Posted by chrissy @ 11:15 PM EST [Link]
Monday, May 20, 2002
So today's sonogram (which was a last-minute-scheduling-nightmare*) shows that the baby's still growing exponentially. In the past two weeks, she's gained another pound -- she now weighs 3 lbs 4 oz. According to today's measurements, she could show up as early as August 4. Two weeks ago, they told us August 7. My official "estimated due date" is August 15. (The countdown at the top of the main page is based on August 7.)
When you walk into the hospital, there's a sign-in station, where they issue you a bright orange sticker that has your name, your destination in the hospital, and today's date. I got my sticker, then the lady asked Geoff his destination, and said, "You're the patient?" to him. We both pointed at my belly and said SHE'S the patient ... and I suggested maybe she needed a sticker too. Without missing a beat, the security lady said, "What's her name?" And wrote "Vivianna" on a sticker & put it on my belly! :D That made the whole day worthwhile.
(Note: The baby's name isn't set in stone ... just written on an orange sticker. We reserve the right to fall in love with a completely different name at any given moment. Or even to change the spelling of this one — I actually prefer "Viviana", with one "n".)
She bounced all around during the sonogram. At the beginning of it, her head was down ... by the end of it, she'd turned 180°.
With all of her growing, the fluid & cysts have kept pace. So she's relatively no worse than she was, which is a good thing; it's just not what we were hoping for.
In addition to marveling at her acrobatics, we got to watch her face for a while. Natalie was trying for a profile shot, but the baby kept facing us directly. We watched her yawn, we saw her little eyes open and close, we decided she really does have Geoff's nose. :) I'm putting the picture up that they gave us — it's much easier to make out while she's moving around on the monitor, though.
Dr. Bulas was concerned about the amount of amniotic fluid I'm carrying. She wanted to make sure I'm not doing too much; she was relieved when I told her I haven't had any contractions, and more relieved when I told her that I'm mostly home during the day. She told me I should be keeping my feet up.
*Rhonda called on Friday morning to let us know that there's a team meeting this Thursday, where all the specialists will get together and discuss their caseload. She wanted them to have the most recent images to work from, so that they can figure out what to do with me -- we scheduled a Tuesday sonogram. Then Dr. Bulas called at about 5pm on Friday, to tell me she was putting us in for Monday instead. Then I spent 2 frantic hours this morning trying to get Dr. Match's office to put in a referral for today ... then it all worked out in the end. Doesn't it always?Posted by chrissy @ 07:37 PM EST [Link]
Friday, May 17, 2002
I'm not sure whether this should frighten me. We went to a 6:15 showing last night, along with the other half of the US population who hadn't seen it opening night. Baby danced around during the entire movie -- I made Geoff keep his hand on my belly the whole time because she was just so funny. The movie itself wasn't bad -- it was Star Wars, ya know? But she was really getting into it. She especially seemed to like Ewan McGregor. (Well, who can blame her for that? ;)
On a different note, Geoff and I are buying a set of Frances the Badger books. "Bedtime for Frances" is included in a compilation that Gwen (Geoff's mom) gave us a while back, and I think Geoff & I get a bigger kick out of it than Baby ever will.
"Did he bite you?" asked father.
"No," said Frances.
"Did he scratch you?" asked mother.
"No," said Frances.
"Then he is a friendly tiger. Go back to bed," said father.We won't be decorating the baby's room until after she's born. It just seems like waiting is the safest thing to do. We're not even buying a crib until she's home safe from the hospital. (We have the bassinet that my mom used for me & my sisters, and that Becky used for her two girls.) BUT, because I can't help myself, the other night when I was looking at eBay I bid on & won a complete crib set with Classic Winnie the Pooh. :)
Calendar: Tomorrow we have a maternity tour scheduled at Reston Hospital. On Monday, May 20, we have a sonogram at Children's Hospital. Saturday, May 25 (Happy Birthday Becky!) we'll be touring Sibley Hospital, in DC. My next appointment with Dr. Match (the OB) is on Tuesday, May 28. Today I called and found a dr. who can operate on Baby in utero, if it becomes necessary to drain fluid before she's born. We have a consultation appointment with him on Wednesday, May 29. Then we have sonograms scheduled for May 30, June 11, and June 25.
On the subject of calendars ...
Happy Birthday, Daddy!
Last thing -- for those who don't know about Thé Baby Email List -- you can sign up there to receive email notification of new posts here. I promise, whichever of us posts the update, either Geoff or I will send out a note.
Posted by chrissy @ 11:50 AM EST [Link]
Tuesday, May 14, 2002
Since last Tuesday nothing exciting has happened. In fact, it was only today that I managed to get in touch with my OB's office to coordinate the follow-up from last week's tests. So I've got sonograms scheduled for May 30 and June 11 .... that second date falls in the week when Geoff & I have time booked at a beach house (I bartered for it with design work - yay me! :). So we're not sure what's going to happen with the beach house.
The "hurry up and wait" game is no fun at all ... we've both been pretty stressed.
On the cravings front, I've had a need for orange soda lately. *I* don't claim to understand it!
In other, completely unrelated news ... a friend and I were comparing how old we are, based on the first computers we grew up with. So I found the TRS-80 graveyard. ;)
[cue music]Memmmmmmmmmorieeeeeeeeeees ......[/music]
Posted by chrissy @ 07:34 PM EST [Link]
Tuesday, May 7, 2002
Can we get a show of hands of everyone in the Thé household who got more than 2 hours of sleep last night? (Jake & Sharou, those are paws.)
Geoff struggled out of bed at 5am ... I reluctantly joined him a few minutes later. He drank coffee; I abstained -- it wouldn't do for Baby to be turning somersaults all day. We left for Children's Hospital at 6:15am, after feeding the puppies & letting them outside for a while. Traffic isn't worth mentioning, so I won't. (That device -- mentioning something by refusing to mention it -- is referred to as "paralipsis". No, it's not synonymous with "tulips". Yes, there will be a quiz. No, I really didn't sleep last night -- can you tell?)
We found Children's Hospital right where it was supposed to be, and we were in the MRI waiting room by 7am. We signed in & I was tagged with an ID bracelet. Dr. Bulas took us right over to the MRI room, where I spent a lovely half-hour lying down but not asleep in the machine. They put me in feet-first, so I could tilt my head backwards to see Geoff ... that helped. The machine was *noisy* ... we both had earplugs, so when it wasn't noisy, if we wanted to talk, we had to shout to hear each other. I'm sure we were very entertaining for the folks in the control room. Other than moving my head, I wasn't allowed to move at all -- which made breathing exciting. (Have you ever been 6 months pregnant and forced to lie on your back without moving for 30 minutes? Try it sometime ...)
(Because the technology is called Magnetic Resonance Imaging, Geoff had to remove any loose metal from his person before they let him into the room. Luckily, I was wearing no metal, and therefore didn't have to wear a gown for this. The metal in my ankle posed no threat. I suppose if it had been a problem, my foot would have found itself attached to the machine.)
One of the reasons it took so long was because the baby kept jumping around ... I imagine she wasn't pleased with the weight of the magical MRI thingie that they laid over my belly.
The MRI showed the concentration of the cysts in Baby's lungs, the fluid outside of them, and the displacement of her heart. The fluid has expanded a bit since last week -- that's not a good thing. Her heart is a little further to the right. The MRI films show that the top half of her right lung is good ... the bottom half is mostly cystic. And her left lung is completely collapsed.
Next on the agenda was the sonogram, which showed that there are probably cysts in the collapsed left lung as well, though it's difficult to say how much of that tissue is affected. The sonogram DID show there are no *other* problems. She hasn't got fluid building anywhere but the thorax, and her measurements are all normal.
Because the fluid has displaced her heart a bit, they wanted to do a fetal echocardiogram -- which is basically a sonogram that focuses directly on her heart. Happily, that came out completely normal.
At 11:10, those three tests were finished. We went upstairs to meet with Dr. Hartman, the pediatric surgeon who will probably operate on Baby after birth. We ended up waiting quite a while for him, so Rhonda -- the genetic counselor who set all of this up for us -- spent about a half-hour helping us figure out questions to ask.
Rhonda, by the way, is a WONDERFUL person. She not only set up all of these tests for us, but she shepherded us through the entire process. Instead of sitting in crowded waiting rooms, we went right through the closely-guarded doors into the clinic areas. Even when Dr. Hartman wasn't available at 11, Rhonda made it possible for us to wait for him at one of the check-in desks inside the magic doors. She also offered to find the answers to any questions we have ... and to debunk any horror stories that well-meaning friends and websites offer. (I have had to tell MORE people in the past week that I don't want to HEAR about babies that don't make it ....)
Dr. Hartman's impression is that we should not be pessimistic. He's seen worse cases, and they have survived. He doesn't want to drain the fluid right now, because it will probably reform within 48 hours. He *has* drained fluid before, and the collapsed lung puffed right up into the space it was supposed to fill -- and then collapsed again when the fluid came back. While the fluid returning isn't a good thing, it IS a good thing that the lung decompressed ... it meant that it would do it again when the baby was born and they drained the fluid.
So draining the fluid pre-birth didn't accomplish anything meaningful for the baby, but it did put her at significant risk for an early delivery. Since baby lungs take a long time to develop, they need to stay put for as long as possible -- Dr. Hartman doesn't believe the risk of early delivery is worth the arguable benefit of watching her lung puff out.
If the fluid continues to build, however, he'll need to reassess. So we'll be having at least fortnightly sonograms to determine which direction this is going in. If it gets bad enough, the entire baby -- not just her lung -- would be at risk.
The cystic tissue needs to be removed sometime after birth. Because he usually only sees problems with ONE lung, not both, this is more complicated. He would only do this immediately after birth if she were in severe respiratory distress. Otherwise, he'd wait til she were between 6 months - 1 year old, and fix one lung at a time, to maximize the amount of usable lung tissue at any one point.
I think that's all I know .... now I'm off to take a nap.
Posted by chrissy @ 04:15 PM EST [Link]
Friday, May 3, 2002
The neonatologist to whom my OB referred me is out on maternity leave. After more phone tag yesterday, I was given the name of Rhonda Schonberg, a genetic counselor at Children's Hospital. I left her a detailed voicemail about the baby, and she called back last night.
Geoff & I were on separate extensions so that we both could talk with her ... she was empathetic, reassuring, and patient with our questions.
The cystic masses in Baby's lungs are called CCAMs -- it stands for "congenital cystic adenomatoid malformation" of the lung. And the fluid in her chest cavity (pleural effusion) is apparently related to this. I don't really understand how it's related; that's a question I'll ask. Note that on the linked page, they talk about polyhydramnios -- too much amniotic fluid in the uterus. I don't have that.
CCAM is not a genetic abnormality. In fact, they don't know what causes it -- but they know that nothing I did caused it, and there was nothing I could have done to prevent it. And if I were ever to get pregnant again, the chances of this happening again are very slim.
Rhonda has set us up for testing, starting at 7:30am on Tuesday. We'll have an MRI, so that they can check the extent of the CCAMs, an ultrasound to make sure she's still in there, and a fetal echocardiogram, to make sure her heart isn't under too much pressure from the pleural effusion. After those tests are finished, we'll meet with Dr. Hartman, who is a pediatric surgeon. Rhonda referred to all of these tests as "running the marathon", and promised that by the end of it (sometime in the early afternoon) we'd be too exhausted to do anything but go find a good restaurant for lunch.
We asked Rhonda what will happen after this. She can't give definite answers, of course, 'cause we haven't had the tests yet. But they will monitor Baby with frequent ultrasounds, and if an intervention is needed, they'll know that before serious damage can happen. They try not to operate in utero, because it can cause contractions and I'd end up on bed-rest for the rest of the pregnancy. After birth, if these issues haven't resolved themselves (and there is still a chance they may), the baby will be taken from wherever I deliver to Children's Hospital, where they'll drain the fluid. Depending on the extent of the CCAMs, they may also remove the damaged lung tissue. Otherwise, they may wait until she's older.
Rhonda reassured us that babies can live with even only ONE lung, if they have to. Questions we need to ask on Tuesday: Will she suffer developmentally because of oxygen deprivation, if they have to take out a lot of tissue? And if they have to put in a shunt to drain the fluid at birth, how long will that stay in? What makes the fluid *stop* accumulating?
If anyone thinks of more questions, email me with them, ok? We'll have other opportunities to ask, but we know that on Tuesday, we'll have their (mostly) full attention.
Oh -- I forgot to mention this -- the baby is upside down. She could still change positions, and in the grand scheme of things, it's almost a "so what" sort of thing ... but if she stays this way, we'll end up scheduling a c-section.
That's all I know!