Friday, February 24, 2012

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.

Tuesday, February 21, 2012

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.

Tuesday, February 14, 2012

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.

Monday, February 13, 2012

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.

Sunday, February 12, 2012

Pictures of Bee

I figured now would be a good time show off some pictures of our little gal.  This requires quite the foray into Technology for me--but I think I managed to figure out our scanner.  Here are some ultrasound pictures of Bee, starting at the 13 week scan.
Cute, eh?  This is at 13 weeks.  Four weeks before this she was just a little gummy bear.

These next few are from our gender ultrasound. I'll refrain from posting the money shot. She *is* a lady, after all.

From left to right, we have head, torso, and an apparent absence of legs.  They're somewhere in there, I promise.

And these are from 21 weeks--about a week ago. 

That's her right hand covering her face. Aww...

And there's that sweet face! Hi Baby!  (Looks nothing like Henry did at this stage, in my opinion.)

As the label would suggest, this is her Right Foot.

So there you have it. If there's an upside to all this, it's that we will get to see baby Bee lots and lots over the next few months.

Friday, February 10, 2012

Genetic counselor update and "Look ma, I can spell."

Henry (19 months old) let me know this morning that today was going to be a good day.  Normally when he wakes up in the morning, he's all business.  He wants his sippy cup of warm milk ("Milk. Hot.").  He'll let you know if he's pooped ("Poop. Diaper.").  Then he wants to go downstairs for breakfast ("Oatmeal."  Which sounds remarkably similar to "Elmo" or "elbow" in Henry-speak.).  Today when I walked into his room, he started giggling hysterically from his crib.  I hand him his cup of milk, and he's still giggling.  Plunk him onto the changing table--still laughing.  Not that he's not a happy kid, but this is not his usual mode of operation.  *Then* he wants me to sing his current favorite song--an obscure little song with a lot of doodle-oodles at the end.  To make his request known, he says "Doo?"  He's maybe the only person in the world who actually desires to hear me sing, and rightly so.  But he loves it.  The joy he was getting today from this crazy little song was a great way for me to start the day.

Jonathan and I met at 9:00 for our appointment with the genetic counselor.  We didn't get a lot of new information, but we did have a good discussion about genetic testing.  There's a brand new blood test that the FDA just approved that can check for Trisomy 13, 18, and 21.  This would be a test on *my* blood and wouldn't involve an amniocentesis.  The down side is that it's brand new and it ain't cheap.  Right now, Jonathan and I are waiting for the fetal echocardiogram (a detailed ultrasound of the baby's heart) to figure out how to proceed as far as an amnio.  If the echo shows any kind of heart problem, we'll probably go ahead and do the amnio.  If it looks okay, well, then...I dunno.  We still might do the amnio.  We'll see how we're feeling when the time comes, I guess.  The echo should be scheduled in the next week or two, but we don't have an appointment for that yet.

We also briefly saw Dr. Nuthalapaty, the perinatologist.  I have now learned to both spell *and* pronounce his name, because here's how our conversation went today:

Dr. N:  Hey! How are you guys?  I read your blog!
Me: You...wait, what?  Wow, word travels fast.
Dr. N: Yeah, me and my unpronounceable last name.
Me: <facepalm>
Dr. N:  That's okay. Do you guys have any questions for me today?
Me: I'm so embarrassed.  Oh my word. I am *so* embarrassed.  I'm really sorry.

Lucky for me he's a nice guy with a sense of humor.

We continue to believe that God can heal our little girl.  Whether He chooses to do this or not, we will be okay.  And Bee will be okay.  But we ask that you continue praying (sending positive energy/vibes/good thoughts) for her little body.  We'll get another peak at her when we have the echocardiogram in a week or so.  Please pray that we wouldn't get discouraged or anxious in the wait between now and then.

Also, there are a couple blogs I've found that have been extremely encouraging to me over the past few days.  Please pray for these two little guys who are in the middle of a ferocious battle against CDH.  Jude and Killian.  Keep fighting, guys.

Thursday, February 9, 2012

Not the blogging type, but here we are anyway.

If you know me at all, you know that I'm not really the type to make public announcements about what's going on in my life.  For one thing, being majorly introverted, I find that kind of thing makes me more vulnerable than I'd like to be.  For another, I question whether the general public really cares, wants, or needs to know what's going on.

However.  Jonathan and I are at the very beginning of what will likely be a very long and difficult journey.  We *need* to share this with people.  Not just to keep you updated, but because we desperately desire and cherish your prayers (or good vibes, positive energy, healing thoughts--we'll take whatever you've got) for our baby girl.  You can call her Bee.

A week ago today, I was 21 weeks pregnant and we were at the OB office having our anatomy scan.  This is an ultrasound that's usually done about halfway through a pregnancy to check for any birth defects or issues that might come up with the baby.  We already knew we were having a girl (sprung for that gender ultrasound at 16 weeks--worth every penny), so we were expecting a fun and uneventful office visit and an ultrasound where we would get some cool pictures of Bee.  

Our sonographer was precious and ooh'ed and ahh'ed with us over those perfect little baby toes, those sweet little lips, those little clenched fists that she was hiding her face behind.  And then she says, "Hmm. Let me tell you what I think I'm seeing."  (In telling this story to others, some people seem appalled that the ultrasound chick is the one breaking this news to us.  Personally, I really appreciated her honesty.)  She tells us that what it looks like is that the stomach is right next to the heart.  This, friends, is not where stomachs go.  

We saw the OB after that and she let us know that she agreed with what the sonographer had seen, and that was the first time we heard the words "diaphragmatic hernia."  Your diaphragm is a big dome-shaped muscle that, among other things, provides a nice barrier between your heart and lungs (above) and your stomach/liver/various other guts (below).  Bee's diaphragm didn't develop normally, so her stomach and part of her bowel snuck into her chest.  This is obvious on ultrasound (even to me), because her heart has been pushed over to the right side by her stomach.  Also involved in this scenario are her lungs, which now don't have enough room to develop properly.  

We got scheduled with the Maternal Fetal Medicine folks for the next day, and had a reeeeallly long ultrasound at 8:00 a.m.  We got to see more of Bee's sweet face, which was nice, but we also spent a lot of time looking at her chest from various angles.  Stomach still right there next to her heart. Ugh.  We got to see the perinatologist after the ultrasound--a really nice and compassionate guy with a very long and unpronounceable last name.  He went over what a diaphragmatic hernia is (or, technically, a congenital diaphragmatic hernia, since Bee has it in utero) and why this is a very serious diagnosis.  He let us know that we're looking at a minimum of several weeks in the NICU once she's born, and she may or may not need ECMO (the heart/lung bypass machine...basically) at some point.  This is when he let us know that we wouldn't be able to deliver in Greenville.  Honestly, that was probably the most shocking part of the whole appointment.  Because wow, if we have to go all the way Charleston (or Vanderbilt, or wherever), this must be *really serious*.  Not that a NICU stay without ECMO is a walk in the park, but you know.  

We also discussed the fact that diaphragmatic hernias are often associated with other genetic conditions, a couple of which (Trisomy 13 and Trisomy 18) are almost always fatal shortly after birth.  The only way to rule those out definitively would be to do an amniocentesis.  He offered to do it right then and there, but sticking a giant needle into my belly right next to my unborn child is something I need a couple minutes to think about.  Jonathan picked up on my hesitancy and let the doc know we would need to hold off on this procedure, at least for now.  

The next day, Saturday, Jonathan and I went over to our friends Chad and Wendy Norris's house so that Chad could pray for baby Bee. (Also--a special thank you to Wendy and the Norris kids for letting us borrow Chad literally minutes before he was hopping on a plane to South Africa!) Chad and Jonathan went to seminary together, and Chad now works at a church in town.  When I asked him one time what he did there, his answer was along the lines of "I help people get to know Jesus."  He talks about the Lord like they're buddies.  Like they get together and eat bean dip and watch Georgia football on a regular basis.  This is the guy you want praying for your baby.  Being the scientific and medical type, I asked him before he started praying if he thought we should pray for *healing* of the diaphragmatic hernia, or maybe just the "best outcome."  (Looking back, what a faith-less question on my part, but I digress.)  Chad says, "Listen. I've been called extreme all my life, but if I'm going to Vegas, I'm going to *Vegas*".  Okay then. Let's pray.  And let me tell you, he prayed for this little girl like I've never heard anybody pray for anything in my life.  I don't know what, if anything, the Lord chose to do in Bee's body at that moment, but I do know that He loves the heck out of her and is going to get her through this.  

Tomorrow we have an appointment with the genetic counselor.  My understanding is that we'll get a lot of percentages and statistics, and there will probably be mention of getting an amnio.  Updates to follow.

So there's the word on our sweet baby Bee.  Please pray for her developing organs and that somehow her lungs would have enough room to grow and be functional once she's born.  Please pray for Jonathan and me as we try to figure out the logistics of how this whole thing is going to go down--which hospital to deliver at, where to stay, and--what I'm most concerned about--what to do with Henry once Bee is born.  He's like his momma and he likes his routine, so please pray for him that his little world doesn't get rocked too much.

Can't believe I'm a blogger now,