Wednesday, April 25, 2012

Why I don't play poker.

Not the best MFM appointment today, friends.  I've gotten so used to everything being the same every time we go, and there are *so* many appointments, that I was at the point where I felt like I didn't necessarily need Jonathan to come with me.  (I mean, I'm always happy for him to come, but him leaving work for a couple hours every week doesn't seem necessary unless it's...necessary.)

To cut to the chase, we think some of Bee's liver has made its way into her chest.  There was some discussion as to whether it was the left lobe of the liver or the spleen (not that it matters a lot, I think--they're both solid organs that you don't want mashed up in there), but according to the sonographer, something about the blood flow to this mystery organ made her think it was more likely liver.  I've been happily (sorta) bopping along through this process with many assurances that the liver was still down and hurray, what a good sign that is.  So to find out now that it's up was a very unpleasant shock.  *And* I was by myself to receive this news.

To top it off, who did I get to chat with about all of this?  None other than Dr. Sandwich! (Dr. Sandwich made his first appearance on this blog here.)  To be fair, he was much better this time around.  Like maybe he had already finished his sandwich. Har har.  He came in and asked how I was doing and I told him that I was "discouraged" to find this out about the liver. (In real life, I was way beyond discouraged and just trying really hard to hold it together until I got to the car.)  I think in an attempt to make me feel better, he said that it's possible it's been up all along but we just couldn't see it on ultrasound until now.  Also mentioned something about "the defect is probably larger than we initially thought."  Shockingly, these facts were not comforting to me.  But at least he was trying.  And he may have patted me on the back at some point, I can't remember.

In a brilliant planning move, immediately following this appointment, I had to rush back to work to see a patient. (Many thanks to this patient and his mother for not having anything snarky to say about the fact that I was approximately 26 minutes late seeing them.)  Anyway, this is the part where you get to find out why I don't play poker.  As I was walking in to work, I thought I had gotten myself together pretty well.  No longer on the verge of tears, at least.  The first person I encountered as I got off the elevator was my boss, Dr. K.  I say hello, smile (!), and patted myself on the back for being oh-so-convincing in my "I'm totally okay" demeanor.  (I was about to walk into a patient's room and didn't have time--see above--to get myself all worked up again.)  He gives me a look and says, "You look...pale. Are you okay?"  And that, friends, is why I don't play poker.  I can't hide anything!  I've been told for most of my life that I have an "expressive" face, but you'd think that after 32 years I'd be able to fool people every now and then.  Apparently not.  Anyway, I told him that I couldn't talk about it quite yet, and this is how I know I have the best boss in the world, because he said, "Well, whenever you're ready to talk about it, I'm here to support you however I can."  So of course *that* made me cry, but in a good way this time.

As usual, we got a few pictures of sweet baby Bee.  Her little cheeks are getting chubbier, which is super cute.  Jonathan and I have been saying the whole time that she looks nothing like Henry, but I think we got proven wrong today with this one particular picture.  So, here's Bee at not quite 33 weeks:

And here's Henry when he was about a week old. (He was the world's prettiest newborn, by the way.)  I'm not sure if it's apparent to anybody but Jonathan and me, but to us, these two are looking very very much alike.  And not to be a downer--again--but the fact that she's starting to look so much like her brother somehow makes today's news seem even worse.

So there's today's update.  Please please pray that Bee's liver will *go back down*.  I've been reminded today about how they say you really don't know how a CDH baby will do until she's born.  Until now, that's been a way to temper my optimism.  As in, she has all these factors going for her, but even so, she might not do great at birth. *Now* I feel like I'm coming at it from the opposite angle.  Just because her liver is up at the moment, she could still do awesome.  Please pray that this is the case.  And please pray for my attitude as this journey continues.  I'm a control freak and it's really bugging me that I have absolutely no control over what's going on with my baby girl.  I know intellectually that God loves her even more than I do, but I think I'm having a hard time really *believing* it.

Next appointment with MFM is in a week.  Stay tuned.

Sunday, April 22, 2012


So, our big Charleston adventure was Wednesday and Thursday of this past week.  We had several doctor's appointments on Wednesday, and then Thursday was sort of the "human interest" side of our trip.

Wednesday started with a detailed ultrasound at maternal fetal medicine (on Bee Street!).  Not much new information from that one other than Bee is now weighing an estimated 3 pounds 14 ounces.  After the ultrasound, we got a little lunch break before meeting with the perinatologist.  We ate at a super delicious place called Hominy Grill.  Their specialty is shrimp and grits, which I didn't get because I have a cheese aversion (yeah yeah, I know) and a lot of places seem to like putting cheese in their grits.  What I *did* have was pan-fried flounder over tomato jam, with sides of mashed sweet potatoes and okra/tomatoes over jasmine rice.  Oh! And lemonade!  That was some good stuff.  If you're ever in the Charleston area, I'd highly recommend this place.  Jonathan was pretty sure they'd been featured on the Food Network at some point. (The fact that I just spent half a paragraph on what I had for lunch makes me think of the letters that my mom used to write to my grandparents when she was in college.  They usually included an account of what she had for breakfast that day, as well as what she was wearing.  Cereal for breakfast and wearing purple hot pants, for example. So cute.)

After lunch we met with Dr. Chang, the perinatologist.  I loved him.  Really smart guy who wasn't afraid to give a definitive answer to a question.  After a discussion on the pros and cons of a vaginal delivery (I had a C-section with Henry, so it'd be a little trickier than usual), he got us set up for a C-section on June 7th.  So now Bee has a birthday!  He didn't seem to think we'd need to come to Charleston much before the day of the actual birth, which is nice since I'm trying desperately to conserve my FMLA hours at work.  (Actually, what he said was, "It might be a good idea to come down the night before the surgery."  Which I found hilarious, since we'll be coming from 3 1/2 hours away.  Yeah, I'd say we probably won't be coming down the day *of*.)

The next appointment was with Dr. Streck, the pediatric surgeon.  Before he came in, we got subjected to to meet a sweet medical student who, bless her heart, was really trying.  I'll spare you the gory details, but the one thing I have to mention that's starting to drive me batty is how every new provider we meet feels the need to gauge my level of understanding of CDH.  I may or may not have rolled my eyes when she asked me this, but I launched into the "Various guts in the chest cavity, lungs can't develop right, lotsa problems after birth" spiel.  She then proceeds to ask me if I understand the anatomy of what's going on.  Well I sure hope so by now, sweet-little-medical-student-who-was-really-trying.  

So *then* the surgeon comes in.  Let's just say he was worth the wait.  When I compare my conversation with him to the conversation I had with the surgeon in Greenville (who, by the way, is a great guy and a wonderful surgeon--he did a minor little surgery on Henry about a year ago), it was like night and day.  This guy could do a CDH repair in his sleep--he had even done one the day before.  He just really seemed to know what he was talking about.  He might not be the one who actually does Bee's surgery--just depends who's on call that day--but he said that all the pediatric surgeons at MUSC have a standardized way of caring for CDH babies.  They all have the same criteria for putting a baby on ECMO, for example.  Anyway, I won't go into everything he said, but after talking to him, I felt very reassured that we're making the right decision to deliver in Charleston.

We also got a brief tour of the NICU, where Bee will go once she's born.  I had a brief stint a few years ago as a NICU nurse, so I knew what to expect as far as the rows of isolettes with lots of beeping monitors, IV fluids, ventilators, etc.  Jonathan was a little overwhelmed at first, but I'm glad he got to get the visual of what we're in for.

So that was Wednesday.  It was a really busy day, but I'm so glad we got to meet all the Charleston specialists.  It was good confirmation that we're going to the right place.

Thursday morning Jonathan and I had breakfast with Rose, baby Jude's momma (check out their blog).  To say that this family has been through a lot would be an understatement.  Being a parent of a CDH baby is like being in a club that you never wanted to be part of.  But club members are few and far between, which is why it was such a blessing to talk to somebody who's been there (and is *still* there).

Our last stop was a lunch visit with Melissa from Cross Bridge Ministries.  This is an amazing organization that ministers to families who have babies or kids in Charleston area hospitals.  Their goal is to help families with whatever needs they may have while living away from home.  Our major need is for housing, since Bee's NICU stay is likely going to be at least a couple months.  Melissa assured us that we would have a (completely free!) place to stay while we're in Charleston.  Amazing.  Thank you, Lord, for this ministry.

So there's the fairly lengthy Charleston update.  If you've made it this far, you deserve some pictures :)

Please continue to pray for our sweet little girl.  Thanks, y'all.

Friday, April 20, 2012

Bee Street

Full update on our Charleston trip to come, but look at this!  A couple of our appointments were on Bee Street. How appropriate. :)

Friday, April 13, 2012

MFM visit and some pictures from 31 weeks.

As promised, a brief (maybe) update from my perinatologist appointment this week:  First of all, I had a super sweet sonographer who was trying really hard to get some good pictures of Bee's face.  She would even adjust the settings on the machine and ask what I thought looked better. I told her if the ultrasound business didn't work out then she could become a photographer. Ha.

I ended up seeing Dr. Chapman, who I hadn't met before but was very nice.  She said she was familiar with my case because apparently all the perinatologists from this practice get together periodically and review their patients so that everybody's on the same page...and they had just talked about my case recently.  I told her that I'd seen the pediatric surgeon the day before and how we'd had the discussion about where to deliver.  Her comment, which made a lot of sense, was "Well, if you want to live with no regrets--and that's what we're about, right?--you should deliver in Charleston.  If you want to take some risk, deliver in Greenville."  And she's so right.  I don't know if I could live with myself if I made a life or death decision involving my child based on what's most *convenient*, and then something bad happened.  So to Charleston we will go.  And that's that.

Dr. Chapman also mentioned something that the pediatric surgeon had touched on the day before.  She was talking about lung volume in babies with CDH and how, of course, you want as much as possible, but that just because the baby has decent looking lungs before birth, doesn't mean they're necessarily going to do well.  She said she's more concerned with how the lungs function than how big they are, and there's just no way to know that until you test them out, so to speak.  After the baby's born.  The surgeon said basically the same thing.  "All this talk about pulmonary hypoplasia*, when really what you have to worry about is pulmonary hypertension*. Harrumph."  That might not be an exact quote, but that was the idea.

(*My attempt at an oversimplified explanation of these terms is this:  Pulmonary hypoplasia refers to the fact that the lungs aren't as big and developed as they should be.  This is due to the crowding they experienced during fetal life with all the extra organs and whatnot up above the diaphragm--in the space that should have been reserved just for lungs and heart.  Pulmonary hypertension is more complicated, but it's basically the blood pressure in the lungs themselves.  Due to the pulmonary hypoplasia, the blood vessels in the lungs aren't as open as they should be, and blood doesn't flow as easily.  This causes the right side of the heart to work extra hard as it tries to pump blood through the lungs.  All that extra work can end up causing heart failure, which is, from my understanding, one of the major causes of death for CDH babies.)

All that to say, it's impossible to predict how this is going to go.  But if you would like something specific to pray for, I'd ask that it be for NO pulmonary hypertension for Bee.  It's a beast. It's evil.  It strikes fear in the hearts of pediatric surgeons, neonatologists, and, well, me.

But moving on to a more pleasant subject, here are some pictures that our lovely sonographer (Mary Helen) took for us of beautiful Bee.

That last one absolutely owns me.  I'm pretty sure even the sonographer teared up when she found that shot.  And I love that she labeled it "Baby Bee." So sweet.  Anyway, our girl looked good on ultrasound, apart from the obvious, and she's growing great!  Up to 3 lb 8 oz now.

Next Wednesday is our big visit to Charleston.  My parents will be coming to Greenville to stay with Henry while we're there.  Please pray not only for all our doctor's visits, but that our little man Henry will do well while we're gone.  I have a feeling he'll do great and I'll be the one who will be a wreck being away from him.

Wednesday, April 11, 2012

Pediatric surgeon appointment

We went to see the pediatric surgeon here in Greenville yesterday (next week we're going to see the peds surgeon in Charleston). 
Sidenote: a quick little tidbit o' geography for you.  This here is a map of South Carolina.  We live in the northwest-ish part of the state in Greenville.  Charleston, where we plan to deliver, is down there on the coast.  It takes about 3 1/2 hours to get from A to B.

So.  Even though we don't plan to deliver here, they set us up with the local pediatric surgeon as a "just in case."  We waited in the waiting room for over an hour, which I guess is sort of to be expected when you're the last patient of the day, but the unfortunate thing was that Jonathan had to leave before we even got to see the doctor so that he could go pick up Henry from daycare. 

Seeing the surgeon was interesting because he's the first person I've talked to who has actual experience on the baby side of things (versus the pregnant side).  He told me about a recent CDH repair he did where the baby went home after only ten days.  I thought that was pretty incredible, since the average NICU stay is something like 2-3 *months*.

I told him that I would really love for somebody to talk me into delivering in Greenville. Logistically it would be about a thousand times easier.  We wouldn't have to worry about a place to stay, I wouldn't have to worry about what to do with Henry and how he'll do when he's all out of his routine, and it's a lot closer for our extended family.  He told me we could definitely deliver here and after a little hesitation told me (because I asked) that if it was his baby he'd deliver here.  He gave me a few statistics on the likelihood that Bee will need ECMO (25% for CDH babies).  If she did need ECMO and we were in Greenville, they'd have to transport her, which he kinda made sound like no big deal.  (Or, really, I think he was saying that if she needs ECMO, things are pretty dire in the first place, and a transport doesn't add that much extra risk--relatively.)

I left that appointment thinking that maybe we should rethink this whole delivering in Charleston thing and try delivering here in Greenville....but then I got home and talked to Jonathan and came back to reality.  He pointed out that it would be much less stressful to deliver in Charleston and not need ECMO than it would be to deliver in Greenville and have to scramble to get to Charleston because Bee wasn't doing well and needed ECMO.  Good point, husband.  So then I had a minor breakdown because for about five minutes the stress of the prospect of living out of town for potentially several months had been lifted...and then the cool voice of reason (Jonathan's) brought it alllll back.

So that's the pediatric surgeon update.  Didn't get a ton of new information, but did get to have a little angst added to my afternoon.  It kind of made me wonder if I'm in some variety of denial about this whole thing, since I haven't had many freak out moments since finding out about Bee's CDH.  My self-analysis is that I've been told so many times that there's no way to know how babies with CDH will do until they're born.  We are praying and believing that Bee is going to do great, but even if she doesn't, there's no point in worrying about it ahead of time.  There's that verse in Matthew 6 about not worrying about tomorrow, because there's enough to worry about *today*.  (Like the fact that my previously great-sleeping toddler has decided that he can't fall asleep without screaming bloody murder for 5-45 minutes.  It's been fun.)

I had an appointment this morning with the perinatologist, which went well.  I'll have to write that one up tomorrow so I can include some pictures.  She continues to be super cute.  Of course.

(And welcome to the world, Molly--my new niece who was born last week!)