Monday, March 12, 2012

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.


  1. Girlfriend I am so with you!! There have been lots of times that I've had to stop myself from the overshare, but then I find myself wondering why. It's our reality, even if it makes others uncomfortable. Typically, I hold off unless they ask something along the lines of "How is this pregnancy compared to the first?" Thankfully, I have gotten some really good support and some surprising prayer promises. I haven't frightened anyone into running away screaming. Yet.

  2. I dreaded strangers commenting on my pregnant belly. I would also keep things short and not elaborate, except for what my thoughts were saying in my head... The "aren't you just so excited?" and all the other well-meaning comments. I feel really bad for the people that caught me on a bad day that resulted in tears. I say - say however much or little you want. They opened the door by asking. Each day might be different.

    As for life's worries. It will all work out. God will provide. I was so worried about Rowan (my older child who would be at home) and how that all would play out - and she was fine. We were in the NICU 49 days and she had so much fun being spoiled by grandparents and friends. Sure she missed me - but she was not scarred by the experience.

    Sending love and prayers from Oregon.

    Liz, mama to Finley (L-CDH Survivor) and Rowan

  3. I had the same debate on what to say to strangers, and even to friends. I didn't always share the whole story openly, but often I did. I printed out little "prayer cards" that provided a link to my blog. It was a great way to explain what CDH is and why I was so desperate for prayers for my son. It allowed me to share his story without having to verbalize it over and over.

    I'll be praying for good results at your next ultrasound!

    Mom to Ramsey, LCDH survivor