Buy Stickers, Save the World

Okay, that's perhaps a little over the top. But my sticker store is donating all profits for 2008 to charities. Help us have some profits to donate--buy yourself some stickers, or pass our name along to (Dutch-speaking, EU-resident) friends and family who might be interested. If you're a journalist, blogger, or other media-maker for a Dutch-speaking public, write about us.

Our slogablurb:

Butterwing Stickers
mooie stickers waarmee je de wereld ook nog een handje helpt
kinderstickers * knutselstickers * hobbystickers

As seen in our website logo:

Checkup: 33 weeks 5 days

Everything still looks great. Cervix 3.3 cm, fundal height 34 cm (right on target), CTG with a beautiful heartbeat and no contractions. I'm still feeling more like a relatively normal pregnant person, less like a walking time bomb.

Four more appointments, and then he'll be here. Just 17 days to go!

Happy Birthday

Our son turned 9 today. Serendipitously, his school had a study day, so he was free to party all day long. Best friend Ivar slept over on Tuesday night and both boys were quite excited. And up early this morning.

He was ambivalent about his birthday over the past few days. Part of that was worry that his father and I might not be able to be there (if we had an emergency situation with the pregnancy); part of it was the associated thought of possibly having to share his birthday with his little brother. But mostly, it turns out, it was something his sister said. She told him we didn't have any presents for him. And he believed it!

But presents he received in abundance, and many visitors, and good weather. He went to bed quite satisfied, feeling very much the birthday boy.

Checkup: 33 weeks 2 days

We had a little more excitement yesterday, culminating in another visit to the hospital just to be sure. The CTG didn't pick up any contractions, cervical length via ultrasound was 4.1 cm, and manual examination of the cervix showed it to be tightly closed and moderately firm. I came home feeling like a normal person instead of a walking time bomb, if only for a little while.

The entire staff reminded us to call again no matter how wispy the symptom: better that we call 100 times for nothing, said Dr. Dietz, than that we don't call and that nothing turns out to be something after all.

Today's regular checkup went very well. Weight 66.25 kilos (146 lbs), up a whopping 1.25 kilos (3 lbs) in 4 days. Surely some of that was my sweater. Cervix is 3.2 cm, CTG was lovely (the baby slept through it this time around), no contractions. New was the abdominal ultrasound to check on the baby's growth. All his parts look wonderful (and boy did we get to see male genitalia up close and personal, no mistaking the sex) and he measures just under average by Dutch standards (remember, these are the tallest people in the world). That puts him at an estimated 3.5 kilos (7 lbs 12 oz) at full term, and just over 2 kilos (4 lbs 8 oz) now.

We asked about the back-and-forth cervical length measurements, which have ranged from 4.6 cm to 2.7 cm in the past 3 weeks. Dr. Dietz said anything more than 1.5 cm is "long," but you can't glean much more information than that from the numbers. They'll vary from day to day, even moment to moment, based not only on the angle and person involved in the measurement, but also because the cervix itself changes length for non-labor reasons--if the baby shifts position and puts more or less pressure on the cervix, for example. We're just happy that what looked like a downward trend hasn't continued.

Checkup: 32 Weeks 5 Days

[Note: This post generated a lively discussion in the comments, which may be of interest to you if you're grappling with vasa previa. Click on the post title to read the post with all comments.]

The already well-informed Dr. Kuppens had printed out the latest recommendations from Up To Date, an independent informational clearinghouse for physicians, to ensure that her team is aware of the most recent guidelines. Trouble is, there is no recommended optimal management of vasa previa; it's too rare, and there are no large or controlled studies that demonstrate the most effective protocol.

In that light, said Dr. Kuppens, we have room to continually revise our plan. Catharina Hospital will admit me for the duration at any point if that's what we want, and we can even pull the c-section date forward--as early as 34 weeks--if we feel that would be best. If I have contractions again like those Monday, we'll call enough enough and go ahead with steroid shots and a c-section 48 hours later. She even said that if we--or she--just have a gut feeling, we'll go ahead with the c-section. It was refreshing to hear a doctor acknowledge that gut feelings can be valuable sources of information. I certainly believe they can--not because of some voodoo psychic whatever, but because those intimate with and experienced in a situation can pick up on subtle clues that don't quite make it into the conscious light of day.

The hard thing is to know what's best, of course. Boys in particular have the most trouble with prematurity, trouble that can extend into their school years and affect their fine motor skills. But every day he stays in the womb is a day the fetal blood vessels could rupture, and at this gestational point being on the outside will always give a better outcome than total rupture. If we knew when that would happen, we'd wait till the day before and get him out. But, of course, we don't know.

For now my husband and I have opted that I stay home. Despite the panicky rhetoric peppering the Web, we feel that being in the hopsital gives a false sense of security. I've read over a hundred real-life stories and distilled the facts into the following conclusion. In diagnosed vasa previa, there are really only two basic scenarios: either you have some warning before massive rupture (water breaking but vessels still intact, contractions that change the cervix, or simply reaching 36 weeks) or you don't. If we have warning, then the fifteen minutes it will take to get me on the operating table, even coming from home, are more than enough. If we don't have warning, then even three minutes will be too long.

From here on out, we'll also check the baby's growth and have a CTG at our biweekly visits (in addition to the transvaginal cervical length check). The CTG is to check that the baby, ever heavier, isn't compressing the blood vessels over the cervix. My husband and I were worried about that, but Dr. Kuppens reassured us that it's unlikely; the amniotic fluid provides a cushion and buffers the baby's full weight. I sat up as straight as I could during today's CTG, though, to let the baby put as much pressure on the cervix as I could. The results were great; the baby was active and his heartrate was strong, and there were no significant contractions. My blood pressure and pee were perfect; I weighed in at 65.0 kg (143 lbs), up half a kilo (just over a pound) since last Friday.

My cervical length was 2.7 cm, which is less than the most recent 3.2 cm and bears watching but is not yet cause for concern. Dr. Kuppens showed us in detail during Monday evening's ultrasound how they measure the cervical length; depending on the angle (and the person doing the check), readings can vary by a centimeter or so (the shortest number wins). She also showed us what 1.5 cm (50% effaced) would look like. That evening she measured 4.1 cm and 3.2 cm back to back, demonstrating that it isn't down-to-the-millimeter accuracy even though it's expressed as such. That said, today's reading and the reading from a week ago (also 3.2 cm) were made by the same ultrasound technician, who takes three measurements each time. So I'd bet the drop to 2.7 reflects a real change, even if not a full half-centimeter.

My next checkup is Tuesday.

Four Months

Hard to believe it's already been 123 days since my eldest died. Seventeen and a half weeks. A third of a year.

A Little 32-Week Excitement

Thirty-two weeks and two days (the day my water broke with #2) has come and gone and the baby's still safely inside. But this milestone didn't pass completely without incident.

On Monday (32 weeks 1 day) I had mild contractions all day. So mild I'd have ignored them completely if this weren't a vasa previa pregnancy. But they were similar enough to very very early labor (when you think "hmmm, maybe in a couple of days this could become something") and they went on long enough that we decided to have them checked out at the hospital.

They hooked me up to a CTG (cardiotocograph) and measured the baby's heartrate and my contractions for about an hour and a half. The heartrate was beautiful; the contractions were mild but real. A cervical length check late that evening showed my cervix to be unchanged at 3.2 cm, which was delightful news. They kept me overnight for safety's sake, and sometime while I was sleeping the contractions stopped. A second CTG the next morning confirmed a restful uterus. I was sent home with instructions to come right back in if it happened again, however mild.

My husband and I were elated to hear from practically every nurse, resident, and doctor who came by that a big old sheet of paper with my name and instructions written in large, bold letters is hanging in the staff room. This time they all knew who I was!

I slept terribly, but had good company. My roommate, Sylvie, had come in early Monday morning for contractions in week 31 of her twin pregnancy. Hers were significant enough to merit steroid shots and a two-day IV drip to try to stop them. We chatted non-stop for several hours that evening and started back up early the next morning (her IV started pinging just before 7:00 AM, waking us both). Poor Sylvie had to stay at least one more night, but the contraction-stopping drug seemed to be taking effect; I hope she's able to go home today.

My next checkup is Friday morning.

Checkup

We saw Dr. Kuppens today at the hospital. The transvaginal ultrasound showed my cervix is 3.2 cm long, down 1.4 cm from Feb 4 but still not a cause for concern. If it starts heading for 2 cm (1.5 cm is the 'start thinking labor' point) then they'll admit me, give me steroid shots for the baby's lungs (which need 48 hours to work), and operate. From now on I'll be going in twice a week for cervical checks.

Dr. Kuppens also took a quick look at the baby via abdominal ultrasound. Everything looks fine and we heard a solid, steady heartbeat. He's certainly been kicking and pushing around in there enough lately to keep me from worrying about him.

My pee, collected at home this morning, was lovely, no protein or sugar or anything else off kilter. In a charmingly ecological departure from US protocols, the nurse rinsed out my sturdy, lidded plastic pee cup and gave it back to me to use for next time.

I weighed in at 64.5 kg (142 lbs), down 0.2 kg (almost half a pound) from two weeks ago. In total I'm up 7.5 kg (17 lbs) this pregnancy.

On an ironic but positive note, I don't have gestational diabetes this time. (I've been checking my blood sugar at home regularly since 20 weeks.) In fact, everything else about this pregnancy is perfect: blood pressure, blood sugar, weight gain, how I'm feeling. Textbook. If it weren't for that technician at the 20-week ultrasound, we'd be blissfully heading for catastrophe. Intervention-wary though I am, I'm now an ardent supporter of the 20-week ultrasound.

I asked about having my tubes tied as long as they're in the area, and Dr. Kuppens said it was less than two minutes' extra work, but perhaps it's better not to do it right away in case something goes wrong with the baby. My husband is also reluctant for me to do it.

Right now I feel like this decision doesn't hinge on what happens with the baby; we didn't plan this pregnancy, I'm 40, and we've been looking for a permanent birth control solution for a while. I've probably got another 10 fertile years to go. Since condoms clearly aren't foolproof, we need something else. This pregnancy was enough of a shock; I won't be happy at all if it happens again at, say, 45. But I concede that I might feel differently if things go wrong now.

It's not an operation I'd have on its own, so if we don't do it during the c-section, then we'll have to find some other solution. Vasectomy is on the table, but understandably not very appealing to my husband. We'll see.

After speaking with Dr. Kuppens, we headed up to the maternity ward on the 12th floor. We wanted to see if they are indeed prepared for us if we call suddenly and need a rush c-section. They weren't, but now they will be: Dr. Dietz (the obstetrician who explained exactly what we were dealing with two weeks ago at the 30-week ultrasound) will hang up a sign with my name, birthdate, patient number and staff instructions for if we call. She'll also send an e-mail to every nurse on staff so all are aware.

It was a frustrating 45 minutes, and I cried through about ten of them, but I'm glad we did it. The last thing we need is a nurse who answers the phone and thinks, "Yeah, right, you say we need to call in an OR team, but I think I'll just see what the doctor has to say about that." Not that this is an unreasonable response--we completely understand it. And we understand a nurse who thinks, "Poor dear, this must be her first, she's so panicked" and waits ten minutes for the doctor to finish checking someone's dilation before she informs him. But we can't afford any misinterpretations of our situation. We can't afford for someone to wait for my file to be brought up from the second floor before calling in the OR team*.

With every visit we get closer to making conditions ideal in an emergency. With luck, we won't have to find out just how well we've done.


* unbelievably enough, Catharina Hospital still works exclusively with paper files; no electronic patient records.

35 Days to Go

We don't have an exact date for the c-section yet, but I'm 36 weeks on Sunday, March 16. Splitting the difference between March 17 (my choice) and March 19 (when I'm 36.5 weeks as the doctor specified) gives us March 18: thirty-five more days in the best-case scenario.

Now that I've exhausted all I could find to read on vasa previa and torn myself from the computer, the worst of the panic has subsided. It is what it is, and we don't have much to say about how it's going to go. There's only one scenario that can really go badly, and that's if the baby's blood vessels spontaneously rupture with no warning sign. In that case there won't be anything we can do to save the baby, even if the OR team are standing beside my bed, knives in hand.

Fortunately other scenarios are much more likely, such as my water leaking or breaking with no immediate vessel rupture, or changes to my cervix, or contractions. Or reaching 36 weeks without incident. In all these cases they'll be cutting me open within fifteen minutes (perhaps slightly more leisurely in the last case) and the baby should be just fine. He'll be early, but our 33-weeker was fantastically healthy, so that doesn't worry me much.

I've ordered four preemie outfits and five boxes of pantyliners that can detect amniotic fluid leaks. My hospital bag is packed, the maternity ward phone number is posted on the fridge, and we've practiced the route to the hospital during rush hour (also under 9 minutes). I walk slower than a Sunday driver and spend a lot of time resting on the couch. I don't go anywhere farther from the hospital than our home and I've always got a driver with me. This week that's my father-in-law; my husband is in Barcelona for a long-planned and important business trip. His employer was incredibly wonderful to us during our daughter's illness and death--which all began less than three weeks after he was hired--so I'm glad we don't have to ask for special treatment again quite yet.

My in-laws are a real blessing. Always there for us, fun to be with, enthusiastic about the kids and never imposing. My father-in-law is telecommuting to work from my husband's attic office and my mother-in-law cancelled the week's agenda to come stay with me. He's glued to a 50-meter circle of which I am the center; she brings the kids to and from school and has taken over several household tasks. Everyone should be so lucky. My in-laws make up for a lot.

Pictures

I wasn't ready to post these three months ago, but now, reading other people's blogs and seeing how much I appreciate their sharing such an intimate moment, I am.




And this is how she was the summer before all this started:

Digging Out of the Rubble

The past three days have been an abyss of fear, anger, and panic. Fear that my water will break and we won't get to the hospital fast enough to save the baby. Anger at the midwives for not telling us how serious this was back at 20 weeks, anger at the universe for sending more "extremely rare" crap our way, anger at being a walking time bomb with no control over the fuse. Panic that everything has to go just right to get a live baby out of this and someone along the pipeline--nurse, doctor, anesthesiologist--could waste precious seconds that make the difference.

Yesterday I wanted steroid shots to mature the baby's lungs NOW, immediate hospitalization to put me as close to the operating room as possible in the event of rupture, and a c-section as soon as possible after 33 weeks (because our 33-weeker turned out so well and emergency vasa previa babies don't). The medical world is very well-versed in caring for premature babies; in contrast, vasa previa is practically an unknown. A baby has about a cup of blood coursing through its veins (250 mL); in a minute's hesitation or confusion, half could be gone. The difficulties a mild premie faces seem to pale in comparison to those of a baby who's lost half his blood.

No way were we able to wait until February 15 for our next appointment. We called for something earlier and met today with Dr. Schoot at the Catharina Hospital, which is 8 minutes and 42 seconds from our house under regular midday traffic conditions, including one minute inside the house. We went early and scoped out the ER, then the NICU. Both were reassuring.

The NICU staff were welcoming and helpful, though we dropped in without warning. A very friendly and well-informed nurse (she knew what vasa previa was!) gave us a tour. There are sixteen spots on the NICU ward, and during our visit we counted eight or nine nurses. It was peaceful and quiet, no sense of panic or rushing around, no dinging and beeping. Parents and siblings are welcome 24 hours a day and the nurses thoroughly encourage breastfeeding. There are three rooms (space for two babies each) for infants who are close to being able to go home, where the mother can even room in to facilitate round-the-clock breastfeeding.

Our meeting with Dr. Schoot was just what we needed. An experienced obstetrician in his late 40s or 50s, he knew about vasa previa and took it seriously. He spoke to us on an intelligent level and was reassuring without being blasé about the real risks involved. He took another look with the vaginal ultrasound and even my husband and I could see the blood coursing through the vessels on the black-and-white images. Color Doppler showed a thick red artery. It's not quite crossing the cervix, but runs just beside it.

We discussed steroids, hospitalization, when to schedule a c-section and what to do if my water breaks. Dr. Schoot said it's unlikely that an initial tear will rupture the blood vessels, that usually the tear will initially run along a vessel instead of through it because the membrane is less resistant than the vessel. Initially--so we can't afford to lose any time, but my doom scenario of immediate gushing, spurting fetal blood is not as inevitable as I imagined.

We agreed on a scheduled c-section at 36 weeks plus a day or two. Dr. Schoot wrote down specific instructions for us if my water breaks or leaks or I have any kind of contractions: we call the maternity ward at the number he gave us and tell them per his instructions that we're coming in and to get an OR team ready. He'll make sure everyone on the floor is apprised of the situation at the next weekly staff meeting so our call doesn't come out of left field. In the ten minutes it will take us to get from home to hospital, the team will be ready to whisk me away, and Dr. Schoot said within five minutes they'll be operating. It can't be done any faster than that, so there's no added value to my being in the hospital just-in-case.

He also measured my cervical length: a nice, long, far-from-labor 4.6 cm. From here on out I'll have weekly visits to measure cervical length; if it starts to shorten, we'll reevaluate the plan.

We were worried that if rupture happens at night, the obstetrician will have to be called in from home. Dr. Schoot said that half the team overnights in the hospital when on call because they live too far away; the other half live within six minutes of the hospital. Moreover, there's always a resident who is qualified to carry out the c-section, so we shouldn't have to wait on anyone to arrive.

He wrote "Vasa previa!!" in big letters surrounded by bright pink highlighting on a form and added it to my folder. Then he gave us the anesthesiology forms to fill out and turn in so there won't be any delays there. We confirmed our appointment for the 15th and traipsed down the hall, where an anesthesiologist answered our questions, took my blood pressure, listened to my lungs and wrote "healthy" on my form. Then it was off to the bloodwork lab.

My husband and I are feeling much better now. Feeling like we've got a plan in place, that we're doing what we can to produce a positive outcome. Feeling reassured that our health care providers are on the same page and up to date on our situation.

I'll be feeling even better when we pass 32 weeks and my water doesn't break. Then 33 weeks, 34 weeks, 35. Cross your fingers . . . it's still a high-stakes waiting game with an uncertain outcome.

How Much More Fun Can We Have?

Today's followup ultrasound confirmed that I have vasa previa. What is it, you ask?

Usually the baby's umbilical cord implants into the placenta. Rarely, it implants into the amniotic sac membrane (the "bag of waters"), so that the three blood vessels bringing nutrients and oxygen to the baby must travel a short distance through the thin membrane to the placenta. Even more rarely, these vessels sometimes travel through membrane in front of the cervix (opening of the uterus, where the baby will come out). That's vasa previa.

It's very rare and, undiagnosed, highly deadly for the baby. The primary danger is that when the bag of waters breaks during labor, the unsupported, exposed blood vessels will also rupture, causing the baby to lose a substantial amount of blood. Severe damage and death can occur within minutes. A secondary danger is that even if the blood vessels remain intact, the baby's descent will compress them, cutting off his oxygen supply.

The recommended solution is to ease up on activity, go on complete pelvic rest (that means no sex), and plan a c-section by 36 weeks of pregnancy. There goes my lovely Dutch homebirth. Here comes my worst nightmare: I truly fear c-sections. And I'll have to trade my midwives for hospital doctors for the appointments in these last weeks of the pregnancy. You know, I'm really just kind of done with hospitals.

But it is what it is, and a healthy baby born a month early by planned c-section in a hospital so totally trumps a dead baby born spontaneously at term after a lovely vaginal homebirth.

Now I just have to make it through the next 6 weeks without the amniotic sac spontaneously rupturing while I'm, say, standing in the supermarket. Not as certain as it sounds: my water broke at 32 weeks with #2 (he of the birthday wishes).