Saturday, February 2, 2013

A Year Ago Today

A year ago today, when I was 21 weeks pregnant, Jonathan and I got the news that our baby girl would be born with a diaphragmatic hernia.

It was a Thursday.  The anatomy scan was scheduled for the afternoon.  Earlier in the day, an article on the bulletin board at work caught my eye.  It was an interview with one of the pediatric cardiologists and it was about hypoplastic left heart syndrome (HLHS). I don't know much about this condition, other than it is one of the most severe congenital heart defects there are. Basically these babies are born with only half a heart and have to undergo several repair surgeries to correct it.  The point of this article I was reading is that 25 years ago, HLHS was always fatal.  It's still an incredibly serious heart defect, but at least there's a treatment.

Reading that article prior to my anatomy scan, I remember thinking, "Wow, wouldn't that be terrible? So glad my baby doesn't have *that*."  The irony just about kills me.  I was soooo sure that nothing could possibly be wrong with my baby.

I had lunch with my friend, coworker, and "roommate" (we share an office) Sarah that day.  It was her son's 5th birthday, so we talked about how fast he was growing up and what kind of birthday celebration he would have.  I told her about the article I'd read on HLHS and how glad I was that my baby didn't have it.  Looking back, what was I thinking?  She *might* have. She easily could have.

After lunch I met up with Jonathan at the OB office.  That appointment is documented here, which is the first post of this blog.  It's when our as-yet-unnamed little girl was diagnosed with a congenital diaphragmatic hernia.  The OB doc, who was very nice but clearly knew very little about CDH, set up our appointment with maternal fetal medicine for the next day and told me not to "lose sleep" over this.  I vaguely remembered hearing about CDH in nursing school, but had no idea how serious it could be.

I'm a member of Ravelry, which is an online knitting/crocheting community that has lots of groups and forums on various topics...including a "Due in June 2012" group.  This is what I posted there on February 2, 2012 following that fateful OB visit:

Sooo, we’ll know more tomorrow after seeing The Specialist, but at the moment it looks like baby girl has a diaphragmatic hernia. Instead of her stomach being below the diaphragm, it’s above. Wouldn’t be a problem except that it can cause crowding of the lungs (and heart too, but apparently it’s the lungs we’re more worried about) and cause them to not develop properly. The good news is that we’re finding this out now and not after delivery. The bad news is, little bit is likely going to have surgery soon after birth to fix this. And may end up being a preemie, if more bowel gets up in the thoracic cavity and causes the lungs to get too smushed…might have to deliver early so she can have surgery sooner.
We’re seeing maternal fetal medicine tomorrow at 8:00, which involves some kind of high tech ultrasound, plus we’ll be talking to a genetic counselor. 
So, if you’re the praying type, or even if you’re not, please keep our little family in your thoughts/prayers over the next few weeks. Thanks :)

I have to laugh a little at my innocence (ignorance) here.  My main concern at the time was apparently that she'd have to have a repair surgery.  I hadn't yet even Googled "congenital diaphragmatic hernia."  No concept of the months-long hospital stays, the extended time on the ventilator, the ECMO complications, the narcotic weaning, the feeding issues.  Y'all.  Ignorance is bliss.  Not that I was blissful, but if I had found out all that CDH entails on that first day, I think my head would've exploded.  God was protecting me.

There is so much I could say about God's grace and peace and provision over the last year, but a picture's worth a thousand words.
Through many dangers, toils, and snares
I have already come
'Tis Grace that brought me safe thus far
And Grace will lead me home

Amen. Thank you all for your faithful prayers and positive thoughts for our sweet Bonnie.


  1. Leslie....
    I was born with CDH. Over 29 years ago. It was not until recently when I began to actually research that birth defect which I'd survived. Why wait so long? I haven't any idea!! But, let me tell you, researching CDH and its insane statistics has been disconcerting, eye-opening, and solar-plexus-punching reality. Then, I discover Blogs such as yours about babies/children born with CDH. Now, my mind is filled with so many unanswered questions regarding our personal experience!! I should ask my Mom.... ;)
    Bonnie is so adorable!! I just want to hold and cuddle her!! And, she looks so healthy now!! ;-D

  2. LOVE that sweet sweet chubby girl. I feel like I should say, "Happy Anniversary!" Except not. Sentiment fail. But straight from the heart. :-)

  3. I have chills, and I am in tears while reading this. Bonnie is absolutely beautiful! I have been praying for "baby bee" Bonnie, you, and your family from that point on!

  4. Ah I remember those early days. How far you have come. However do you get *anything* done all day with those sweet Bonnie cheeks in your midst?! She is super smush-able. Blessings on her head.

    Mama to Samuel.

  5. Leslie....
    Happy Valentine's Day!! ;-D

  6. Leslie I can't get over how close our stories are. And now I see that you are a nurse too and I don't think I knew that. Our girls are nearly CDH twins! Love the photo!

  7. I remember reading about Bonnie every time you posted. A day would go by without hearing anything and I was worried as if she were my own. I am very thankful for you and Bonnie. You will never know what an inspiration you were for me when I had just found out about Sunni. I feel a connection with Bonnie. It is so nice to see her thriving now. :)

  8. Leslie....
    There have not been any new Blog posts in well over one month!! I miss my Kindred Spirit CDH Friend!! I pray that Bonnie is staying well, healthy and thriving!! ;)

  9. Leslie....
    Did you miss me? {Okay, that was part of a Tony Stark/Iron Man line from "The Avengers". Very cocky and self-centered, actually!!} Well, I have appeared missing in action so to speak around everybody's Blogs lately. I'm baaaack!! Did you miss me? Hee, hee, hee.... ;)
    There have not been any new Blog posts in well over two months!! I miss Bonnie, my Fellow Kindred Spirit CDH Friend!! I hope that you are enjoying Springtime!! ;-D