Pictures from 29ish weeks

As promised, here are a few pictures from our ultrasound this week.  The first one I find particularly amusing.  It's a top down view of Bee's head, and that fringe-y stuff on the left side is hair.

This one is a profile shot. I love her sweet little baby nose.

Aaaaand here's the 3D shot. 

I also realized that I forgot to mention in the last post that they're estimating her weight right now (at about 29 weeks) to be 2 pounds 15 ounces.  That's almost 3 pounds o' baby!  Grow baby grow!

Just Sweet Enough

So here's the update on the past week or so.  I had my glucose tolerance test last week to check for gestational diabetes.  This involves fasting for a couple hours prior to the test, drinking a bottle of corn syrup (not literally), and then checking my blood sugar an hour later to see what happens.  Well.  Ever since I had the test with Henry about two years ago, I've been saying that I passed that one by one point.  The normal range is 74-139, and with Henry, I had a 138. Which I now realize is actually passing by 2 points, because *this* time, I had...a 139.  Thank you, pancreas, for not betraying me in my hour of need.  So as the title of this post would suggest, I am officially just sweet enough.

A couple days ago we had an appointment with the Maternal Fetal Medicine (MFM) folks.  The first thing was an ultrasound with the world's fastest sonographer. Zippy zip, measure measure, click click, and "Oh look! She's got some hair!"  She steps out and comes back in with The Doctor.  Dr. M--white hair and a mustache, probably in his 60's, and looks like he could've been a football player back in the day.  He seemed *really* tall, but that could have also been because I was lounging on an exam table about two feet off the floor at the time. He was one we hadn't met before, and I wasn't sure what to think of him at first, because he kept asking me questions that were sort of alarming, in a "why are you asking that?" sort of way.  "How old are you?  How far along are you? And have we looked at the baby's chromosomes yet? Are you diabetic?  How far along did you say you were?"  This line of questioning was going on while I was back under the ultrasound wand, so for the paranoid among us (me), one can't help wondering why all the questions.  Also amusing was Dr. M's use of the phrase "the kid" when referring to our baby.  As in, "You know, it's hard to predict the outcome with these CDH babies.  Until the kid's born, it's all kind of up in the air."  Pretty sure he referred to Bee at some point as a "he" also.  Despite the questionable first impression, I really did like this guy.

Following this second round of ultrasound viewing, Dr. M looks at me, gives me a big grin, and announces that everything looks good.  Bee's heart continues to look good, with "good ventricular output" (or some such cardiology jargon).  Basically he was saying it wasn't getting too smushed by her abdominal organs hanging out in her chest.  Also, it appears that her liver is still down below the diaphragm.  Jonathan asked if, at this point, there was much chance of the liver moving up.  Apparently the left lobe of the liver is a sneaky little thing and can find its way up there pretty much at any point.  So please keep praying that it stays down down down.

Then there's the lung to head ratio (LHR).  Here's a diagram that I stole from Abby Knoll of "It's How We Roll" fame (check out her blog over there in that list on the right--->)



First, they measure (or at least make a valiant attempt at measuring) the right lung.  (Here we have a cross-sectional area of 21mm x 10 mm, which is 210 mm squared.)  Then they measure the head circumference (200 mm).  Then you divide! (For the math geeks among us, the units don't quite match up because we're dividing an area by a distance, but just go with me here.)  In this example, it's 210/200, which gives an LHR of 1.05.

I mentioned this briefly in a previous post, but there's some controversy as to whether the number even matters.  It looks at the relationship between the baby's head size and the amount of lung tissue present.  The higher the number, the more lung tissue.  (Over about 1.4 is considered pretty darn good.  Bee had an LHR at 21 weeks of 1.8.)  This is a good thing, obviously, but the reason (I think) that the docs are hesitant to make any major predictions based on the LHR is because, you know, it's all up in the air until the kid's born.  Despite this, I asked Dr. M about an LHR, because inquiring minds want to know.  He tells me that he'd rather not give me a number because it's hard to get an accurate measurement of the lungs, it's not reproducible, etc etc.  I basically told him "Yeah that's great and all, but you seriously have got to give me *something*."   Long story short (because ol' Dr. M couldn't remember how to calculate an LHR until I told him, and also because they got about three different lung measurements), Bee's LHR is somewhere in the 2.1 to 2.3 range.  Yay lungs!

One more little piece of info is that my amniotic fluid levels are in the normal range.  That's important because sometimes the fluid levels can get too high with CDH babies, which increases the risk for preterm labor.  We don't need Bee to be a preemie on top of everything else, so she needs to stay cooking as long as possible.

So there's the update.  Lots of good news!  To recap:  1.) I'm not diabetic!  2.) Bee's heart still looks good. 3.) She's got a good amount of lung tissue.  4.) Normal amniotic fluid levels.  Many many thanks for everyone who has prayed for us or sent positive thoughts. God definitely has his hand on our little girl.

I did get some super cute pictures of Bee at this last ultrasound.  When I get a few minutes to play with the scanner, I'll post them. :)

(Also, my younger sister is due any day now with her second little girl...please keep her in your prayers as well!)

No news is, well, no news.

Apologies for the quietness of the blog over the past couple weeks.  We're still here, alive and kicking.  (Literally kicking, in Bee's case.)  Anyway, there just hasn't been much to update you on lately.  We had an appointment with the regular OB (as opposed to the *special* maternal fetal medicine folks. ha.) on March 1st, which was extremely uneventful.  I got weighed, they measured my belly and listened for Bee's heartbeat, they patted me on the head and sent me on my way.  I go to an OB practice where there are 8-10 docs, and they tend to schedule you with somebody different every time. They're all super nice, and I know them all already from when I was pregnant with Henry, so it's not really a problem.  However, it was a little unnerving/annoying/something that the guy I saw this past time seemed not to have been aware of our CDH diagnosis until I said something about it.  Then there was frantic flipping through the chart and "Ooooh yes, I see."   I guess as long as the perinatologists know what they're doing (which may or may not be the case--see previous post on Dr. Sandwich.), we're okay.

The next round of appointments starts in a couple weeks.  On March 22nd, I have another visit with the regular OB, where they'll do my glucose tolerance test.  When I was pregnant with Henry, I passed by ONE POINT. Many prayers please that I'll pass this time.  I'm sure I could handle the diet restrictions, it would just be a huge pain.  Plus I'd be obligated to whine about it for the next 3 months or so.  Nobody wants that.

The next appointment with the perinatologist is March 28th.  That's the one I'm excited about.  We'll have another detailed ultrasound and maybe get a little glimmer of a prognosis.  From what I gather, nobody likes to predict how CDH babies will do until they're born.  Still, any concrete information I can hang onto is good for my mental health.  Dr. Sandwich told me last time that they'd do another lung-to-head ratio measurement at this upcoming appointment, and we're hoping and praying for the highest number possible.  Higher numbers indicate more lung tissue, which is what we want.  They'll also check to see what organs are up above the diaphragm.  So far it's only been stomach and bowel.  Please pray that Bee's liver stays DOWN.  The liver is a big solid chunk o' organ (unlike the stomach, which is a nice squishy hollow bag, more or less), and if it's up there with the lungs, it can seriously impede lung growth.

April 10th is an appointment with the pediatric surgeon here in Greenville.  The original appointment was with He Who Shall Never Touch My Baby, but I rescheduled it with Dr. Abrams, who did a minor surgery on Henry about a year ago (a hernia repair, ironically enough).  Anyway, I still don't expect to deliver here in town, but *just in case*, we're meeting with the surgeon here so that he knows what the deal is.  If something miraculous happens between now and the next perinatologist appointment--and we pray that it does!--and the ultrasound shows the mildest, simplest case of CDH that anyone has ever seen, then we might be able to be talked into delivering here.  Maybe.  It would certainly make this about a thousand times easier in every way, logistically speaking.

April 18th Jonathan and I are heading to Charleston to visit the hospital there (MUSC) and have visits with the Charleston versions of the specialists we've been seeing here.  We'll also hopefully get to meet the lady in charge of Cross Bridge Ministries, who I've heard amazing things about (thanks for the tip, Rose!).  I spoke with her for a few minutes the other day and gave her the details of our situation and how our main need at this time is housing.  "We can help you with that."  Not sure exactly what that will look like yet, but maybe we'll be able to find out more in April.

So there's our timeline for the next few weeks.  I'm doing fine physically, and I'm holding it together emotionally (or, probably more accurately, God is holding *me* together) for the most part.  Every now and then I have moments of wondering how the heck this is all going to work out.  Those worries and wonderings mostly involve childcare, employment, and finances.  How can there be so much "real world" mess to fret over when I feel like I should be able to focus 100% on my baby?

This last bit is just a random musing.  If you don't know me in real life, then "Hi, I'm Leslie. I work as a nurse practitioner in a developmental pediatrics practice."  It's quite obvious now that I'm pregnant, and most of my patients and their parents want to "discuss" this.  Mostly it's "Oooooh, you're expecting!  When are you due? Do you know what you're having?"  (Occasionally, I get, "You're pregnant *again*?!"  That's annoying.  Please don't ever say that to anybody.)   I always smile and tell them we're due in June with a girl and that we're so excited, etc etc.  Which is all true, of course.  But I don't end it with, "..and she has this really serious birth defect and will be in the NICU for weeks, if not months. Hopefully we'll get to take her home."   That would be the full truth.  Do acquaintance-level people need/want to know that?  Maybe they do, I don't know. Feel free to weigh in.  It just seems like an awkward conversation that I'd be having about 6 times a day from now until June.

The house is probably not on fire. (The echo was good!)

The short version:  Bee's heart looks good!  Thank you, Lord.  And thank you all for your prayers and good thoughts for our girl :)

The long version:  We had our fetal echocardiogram this morning.  The sonographer came in first and got a few measurements and/or made sure there was still a baby in there.  Then we met Dr. L the pediatric cardiologist.  As I'd heard from a variety of folks, he was a very nice guy.  He gave us the heads up that he and the sonographer were going to take a look at the heart and might be chatting a little between themselves, but that he wouldn't give any major proclamations until it was all over.  This was, I guess, to keep me from freaking out that he wasn't saying anything during the echo itself.  So instead I freaked out because I was watching a screen where I didn't know what was going on or what was supposed to be going on, and oh my gosh, is it supposed to look like that?? 

Dr. L put me out of my misery pretty quickly and let us know that he didn't see any problems with Bee's heart. Hallelujah.  I'll go ahead and give him the award for Mr. Realistic, because he spent a lot of time talking about the limitations of fetal echo's in general and how it's extra hard in this situation to get the views they normally want because of the position of Bee's heart (smushed to the right by stomach and bowel).  Basically, until she's born and they can do an echo directly on her, there are a few major problems that he could rule out (which he did), but also a lot that he couldn't rule out definitively.  Here's his analogy though, which I liked:  "When I left for work this morning, I know for a fact that my house wasn't on fire.  I also haven't gotten a panicked phone call from my wife saying the house is on fire.  Even though I can't see my house right now to be positive, I'm operating under the assumption that it is, in fact, not on fire."  Point being, don't worry that the metaphorical house (Bee's heart) is on fire (has issues that they couldn't pick up on ultrasound today).  So as far as I'm concerned, our baby has a perfect heart.  God is good.

We also had what can only be described as a weird interaction with the perinatologist.  (This was not our beloved Dr. Nuthalapaty.)  I'm calling him Dr. Sandwich because, as Jonathan put it, "It's like he was in the middle of eating a sandwich and somebody told him he needed to go talk to us real quick."  That's about how it felt.  Rushed and like he was on a completely different page than we were.  Said something about maybe delivering in Greenville instead of Charleston (...what?) and having one of the local pediatric surgeons do the hernia repair.  (Possibly inappropriate sidenote, but I'll say it anyway: The surgeon he mentioned will never be laying a hand or a scalpel on either of my children ever.  I work in the medical field. I hear stuff.)  We didn't learn anything new or helpful from Dr. Sandwich, and honestly I think we would've been happier if we hadn't seen him at all. 

Jonathan continues to remind me that despite the above weirdness, our appointment today was very positive.  He's right.  Bee's got a good heart!  Hooray!  We'll just hope for a better experience next time--that's in four weeks.

Pat the Bunny. Very inspirational.

Jonathan, Henry, and I ran a few errands this weekend, including a trip to Lowe's to check out some paint colors for Bee's room.  Initially I was thinking pink and gray for a color scheme, but then I came across this:

I like the book itself just fine, since it's a *classic* and all, but it's not one of my (or Henry's) absolute favorites.  Although he does like to sniff the mirror.  Haha.  (For posterity's sake, his current favorites are the Dr. Seuss ABC book and Curious George's Dream.)  Anyway, the color combination hit me just right, apparently, so these were the colors I was trying to match at the paint section at Lowe's.  While I did that, Jonathan was toting Henry around in the cart feeding him raisins to keep him happy, because being stationary while staring at a wall o' colors wouldn't go well for very long.  

Well.  Out of nowhere (nowhere, I tell you!), I felt some tears trying to well up.  It took me a couple seconds to figure out what was wrong with me (besides the obvious answer of pregnant-->hormonal-->emotional), but then I realized:  We are planning a nursery for a baby who might never see it.  

I guess I've known that all along, but it never really hit me until then, staring at paint colors.  In every other area of my life, I would be likely to dwell on this disturbing realization.  This is how I know God is hearing our (and your) prayers, though.  Instead of focusing on the "what if we don't get to bring Bee home" train of thought, which would end in some variety of dark emotional abyss, I just...didn't focus on that.  Simple yet effective solution...and it's almost exactly the opposite of how I usually operate.

So yes.  Minor breakdown at Lowe's, but feeling better about things now and looking forward to some good news on Friday from our echocardiogram.  Please continue to pray for healthy heart chambers and valves, and for her heart to be working exactly as hard as it should (especially not *over*working).  Look for an update at the end of the week.

Bee's First Toy

I have some of the best coworkers.  Seriously.  Someday I will write an entire post on my precious friend Sarah, a fellow nurse practitioner with whom I share an office.  At this point, she knows as much about diaphragmatic hernias as I do, and is even following along with other blogs of CDH fighters (Hi Jude! Hi Parker! Hi Killian!).

This post, though, is about Miss Anne.  (Whether she's technically Miss or Mrs. doesn't matter. We're in the South, you know.)  She works at the other end of a very long hallway in a different specialty, but I see her in the break room sometimes.  We've had a handful of brief conversations, usually while I'm filling up my giant and rarely washed (don't judge) water bottle.  Anyway, from the moment my coworkers found out about Bee's condition, the consensus was that I needed to talk to Miss Anne and get on her prayer list.  I've been meaning to seek her out, but as it happens, I didn't have to.

I finished with my first patient of the day and walked into the nurse's station, where I encountered a beaming Miss Anne holding a stuffed kangaroo.  She grabs my hand and we head to an empty exam room.  She tells me that she is a prayer warrior (which I'd already heard from several people) and explains that her church has a prayer ministry where they pray for--I'm not sure, I'm guessing all sorts of people.  But included on their list now is Bee.  I'm probably butchering the explanation she gave me, but here's my attempt: They get stuffed animals (a kangaroo, in this case) and pray over them as if the stuffed critter is the person they're praying *for*.  Because, you know, Bee's a little unavailable at the moment.  Miracles have happened, she tells me.  God is NOT dead, she tells me.  He can heal your baby.  Amen.  Miss Anne then gives me a giant hug and hands me what I will now cherish as Bee's first toy. A kangaroo.  Also a tangible reminder that we have Miss Anne and her whole church praying for us.

See? Best coworkers ever.

Hearts, Lungs, and Ratios

Got a call today from the maternal fetal medicine office letting me know that the fetal echo is scheduled for next Friday, February 24th.  So almost two weeks until we can see our girl again (which is kind of weird to say since I'm toting her around constantly, feeling her move, etc).  Until then, we'll be thinking lots of happy cardiac thoughts.  Thoughts of and prayers for four perfect little chambers doing their thang.  In addition to looking for anatomical issues, we'll (I think) also be looking to make sure all that extra stuff (stomach, intestines) in her chest isn't making Bee's heart work harder than it should be.  That could lead to bad things that I don't want to go into unless it's actually happening.

This other little tidbit is something I've been debating about even sharing here, but the geeky scientist wannabe part of me was pretty excited when I heard it, so...There's a bit (maybe a lot?) of controversy about how much this means, but there's something called the lung to head ratio that can help predict how good of an outcome a CDH baby will have.  (There are also a bunch of other factors that come into play, many of which aren't apparent until baby's actually born.)  Anyway, in this case, higher numbers are a good thing, because it means there's more lung tissue, or at least more lung *space* in the chest.  This is good, because bigger lungs=easier for baby to breathe.  More or less.   So, from what I've read, anything over about 1.4 to 1.6 is great, and has something like an 85% survival rate (National average is around a 50% survival rate. Scary, I know.).  Well, according to the sweet genetic counselor who called this afternoon, Bee's number at the moment is....1.8!!!  I almost cried when she told me.  I don't know how much that number can change over the course of the pregnancy, and like I said, there's some controversy as to how much it really means.  BUT, all that being said, thank you Lord for a 1.8.  Let's pray that it stays at least that high.