Eowyn Ruth Simmons August 19, 2006 4.6 oz, 6.5 in

Diagnosis
Well, July was a difficult month. After a routine midwife appointment, we were scheduled for an emergency ultrasound because of bleeding and inability to find a fetal heartbeat. Looking back, I could wish that we had refused the ultrasound, since no matter what we were going to continue the pregnancy, but then we would have had less time to prepare ourselves. Abnormalities spotted in the first ultrasound caused our referral to a perinatologist's office, where the baby was diagnosed with Cantrell's Pentalogy. Normally I would insert a helpful link here, but there are few sites that describe this extremely rare syndrome (~6 in one million, which includes milder variants of the disease). So, here is what I have found out so far: Pentalogy of Cantrell comprises five symptoms (hence the name).

1. Omphalocele
-protrusion of variable amounts of abdominal content into the umbilical cord
-our baby's omphalocele contains her stomach, intestines, and liver, as well as most of her heart (see 3,4, and 5)
2. Hole in the diaphragm
-intact diaphragms separate abdominal contents from the lungs and heart, allowing each section the room it needs to develop properly
-this condition can lead to underdevelopment of the lungs
-we don't know yet if our baby has this, but it is very likely, given the structure of the omphalocele
3. Heart defects
-a wide range of heart defects is common in these cases
-the baby's heart will not be large enough for some time for the doctors to diagnose the extent of the damage to the heart
4. Defects of the breastbone
-can be cleft, underdeveloped, or missing altogether
-our baby seems to have misplaced hers altogether
5. Heart outside of the chest
-called ectopia cordis, known from ancient times (get ready for a drought, everybody), can include some or all of the heart, very poor prognosis
-not one to do things by halves, our baby's entire heart lies outside her chest, due to the missing breastbone

So, after having read this, you know nearly as much about the situation as we do. The perinatologist has told us that this combination of defects is incompatible with life. While I have found cases in which one or two of the above was successfully addressed, I have seen nothing regarding a case anywhere near the severity level of our baby.

Thank you all for your prayers. We will try to keep you updated if we learn any new information.

Giddiness
A co-worker (well, I guess former co-worker, now) sent me her sonogram pics. She's having a boy - at least as far as I could tell! Something about seeing the pictures, though, made me really excited about my own little one . . . at least excited enough to post about it (plus I feel Matthew would not appreciate being woken up at 5am to look at blurry sonogram pictures from people he doesn't know).

Gifts, welcome and otherwise
Matthew had a business trip to Tampa last week and brought back my first maternity clothes (apparently his hotel was next door to an outlet mall). They're still a little large on me, but it is much nicer to have that problem than its opposite, as almost all of my regular clothes have become at least somewhat uncomfortable.
Less welcome is the cold he brought back with him. At first we thought I had escaped it, but no, yesterday morning I woke up with a sore throat and stuffy nose, and things have only gone downhill since then. At least I don't still have morning sickness - I hate to think about the sheer miserableness that would be. Additionally, someone needs to invent a way to keep designated meds from crossing the placenta; this cold is bad enough that even pill-phobic Matthew was popping Dayquil, and yet the strongest thing I can safely take is acetominophen, and not much of that. Oh well, if he is anything to go by, I only have about three more days before I regain function in my upper respiratory tract . . .

Morning sickness and other joys
My all-day intense nausea form of morning sickness began to ramp down at the beginning of June (due, I feel, to the copious amounts of water I consumed over Memorial Day weekend in order to avoid being carsick). Then came a week of exhaustion, followed by a week of severe headaches. Now my body seems to have settled into an uneasy peace. As long as I drink more water in a day than I used to drink in a month (and no, that's not an exaggeration) the nausea stays mostly in the background, and, weirdly, as long as I'm super careful with dental hygiene the headaches mostly stay away. Interestingly, I haven't really had a conscious problem with exhaustion other than that one week, but I've been falling asleep anytime I hold still for longer than about three minutes this week, prompting the cats to decide I'm turning into one of them, and making me feel like all I do is eat, sleep, and pee.
My big goal this week is to get all the thank-you notes out for the gifts and cards we've received already; unfortunately, this involves holding still for an indeterminate length of time (see above). I may have to put off such a sedentary goal for another week and turn instead to something a little more active, like beginning to box books or something. But in any case, I'd rather have the problem of falling asleep too much than the nausea!

Busy Week
Last Monday, we toured the birth center here in Maryland. Not much was said that we didn't already know, but it made me less nervous about my appointment there on Tuesday. The actual appointment went well; it was a little shorter than the first ones usually are, due to the fact that two mothers were giving birth at the same time (an apparent rarity) and my midwife had to keep running upstairs to check on one of them. But we got all the paperwork out of the way, and the top of the uterus was right where it was supposed to be (thus relieving my irrational fear that there would be twins), and, best of all, we got to hear the baby's heart beat! It was right at 160bpm, which is just where it should be (looks like my drastic cutback of caffeine was successful), and it sounded mostly like this. Definitely hearing the heartbeat made it all seem much more like I am having a baby and less like I just have a really bad case of the flu.
Then on Wednesday I got the go-ahead to continue with the perscription medication I am already taking. Apparently the only confirmed risk with the meds is that the baby may have a slightly greater risk of pulmonary hypertension - which is made even more unlikely due to the fact I have consistently low blood pressure.
So, all in all, a good week, despite the stressfulness of it.

Books
Yesterday, at Borders, I picked up the Sears' Pregnancy Book, and a journal called The Belly Book. The Sears one may be going back; upon closer inspection I feel it's a book I'd rather get from the library than pay to actually own. Unfortunately, these books join the ones I picked up from the used bookstore on the 'useful but additional things to pack' list. (I find it really puts a damper on shopping to be moving in a few months.)