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.


  1. I've been following each and every post you write and praying specifically for you along the way. Will pray specifically that baby Bee's liver will go down. Thankful that you have so many supporting you along the way and was so encouraged to hear how well things went in Charleston and how it seems provision is happening for your stay there. Blessings to all of you....

  2. You are right, even if the liver is up, that does not predict how well she will do- she can fight this! We will pray for her, for you, and for the doctors that will care for her.

  3. Praying praying praying through tears tonight my sweet friend. I am praying for your strength and for baby Bee's health and for her liver and for her to feel the strength of the love surrounding her. You amaze me with your candor and your ability to be so in touch with your emotions while you follow this journey. There is a plan, and I believe it to be a sweet one.

  4. Prayers for you, girl!! I often think going to so many appts here towards the end might be more harmful than helpful to us mamas. You are so close to getting rid of all this yucky uncertainty and kissing those chubby cheeks. Hang in there!!!

  5. Eeeep... I've written my comment twice and twice now it's been deleted. Hopefully third time's a charm.

    You're right about the liver. There's NO WAY to tell how these babies are going to do until they get here. I've watched a lot of these stories unfold (since Clara was born, I wasn't brave enough to get sucked into the vortex before we were through our own journey) and whether the liver is up or down doesn't honestly seem to have that much to do with it. The perinatologists seem to obsess about that one piece of information because they have so few ways to predict what might happen. But once Baby Bee is here all they're going to be looking at is how well she oxygenates and how severe her pulmonary hypertension is. I'm honestly not sure that the liver matters that much. Our surgeons were never concerned with where it was at all (and it turned out it was up, way up.)

    This waiting time, before she arrives, is so hard. You cling to every tiny bit of news and every little indication of what might be ahead of you. The truth is though, there's no way to know. That was so hard for me, planner that I am. But try as much as you can to just focus on growing a BIG baby, on storing up energy for a long road ahead, on constantly handing her over to her Creator, and to trust in a God who is still in the miracle business.

    I have a feeling that Bee is going to be a fighter. She doesn't care whether that liver is up or down. She's going to give it her all. :)

    prayers and love abound.

  6. My Dakota is right-sided where the liver is almost always up. She had about 40% of her liver in her chest and all of her intestines. Honestly, it's so hard. You get all of this information and then are told to disregard it because it may not mean anything. It's so bizarre. And I made it even more perverse by deciding to listen only to the good things as that was the only way I could cope. So I made a list of all of the positive things I ever heard and it gave me hope. And these babies are so amazing. I was talking with a client the other day who said that their baby was born 5 weeks early, but otherwise with no condition, and they had all kinds of problems in the beginning because their lungs were not developed. My Dakota came more than 7 weeks early, with right-sided CDH, with an infection, and she still kicked butt and was out of the hospital after a scary begining in two months. Many, Many prayers for your Bee. She is so gorgeous! I know what we really want more than anything is for them to be healthy, and I believe she will be eventually. Stunning and healthy. And I agree that your son was a beautiful newborn!!! Many prayers for a smooth rest of your pregnancy.
    Mom to Dakota 12-25-2008
    RCDH survivor

  7. Leslie, Elizabeth and I pray for you, Baby Bee, and your family every night. Stay strong and know that God's plan is wonderful and perfect. xo, Linda

  8. During my whole pregnancy, I also clung to every bit of news that would indicate her prognosis. Do not be discouraged by this. She is going to fight hard, liver up or not. And you are absolutely right about not knowing how she will do until after she is born. We are still in the fighting process but we battled pulmonary hypertension, ECMO and everything up except the liver and she is amazing us every day with her strength. Your little Bee is going to amaze you too, I just know it. Let me know if you ever want to talk, vent, etc. I am where you will be soon right now.

  9. Baby Bee is so beautiful and she DOES look so much like Henry's newborn picture! Praying that the liver stays down and that her lungs are growing as large and healthy as they can. Those chubby cheeks are a good sign! love you!

  10. This comment has been removed by a blog administrator.