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,


  1. Hi Leslie.

    My name is Crystal, and I am a good friend of Courtney's. My little boy was born a couple weeks ago at 28 weeks. I was diagnosed with something called HELLP Syndrome. There was no cure except immediate delivery. At that time I was so scared. They told us his lungs would be under developed. When he was born he had a heart murmur. He was 2.8 pounds. Now he is 3 pounds, breathing on his own, and has no heart murmur...all in the span of three weeks. I wanted to say all this to tell you that there is literally NOTHING that God cannot do. Do not loose hope. I will be praying for you and your growing family. I have been writing a blog as well. Keep it up. Trust me - it is therapeutic. :)

  2. I went to school with your sister Ellen and saw your blog link on her Facebook page. My family and I will be praying for you guys because with God all things are possible.

  3. Prayers for you, your family and your precious baby girl. :)

  4. My husband Nate and I praying for you and the precious little girl God is knitting together inside of you. May He give you the strength and the peace you need for each day.

  5. There is only one set of footprints in the sand. Your love and faith will see you through this.

  6. So we have never met and I am part of the black sheep Helms family, but you guys are in our prayers and God has a purpose for all challenges in life.


  7. Hi Leslie, I live in Chapin, SC with my husband and three daughters. My oldest, Madeline was born with CDH. She is five now, and in perfect health. I'm sure you are being flooded with "cdh'ers" and support, but my email is I would be more than happy to talk to you and share Madeline's story! We will be praying for Baby Bee! <3