Sunday, April 22, 2012

Charleston

So, our big Charleston adventure was Wednesday and Thursday of this past week.  We had several doctor's appointments on Wednesday, and then Thursday was sort of the "human interest" side of our trip.

Wednesday started with a detailed ultrasound at maternal fetal medicine (on Bee Street!).  Not much new information from that one other than Bee is now weighing an estimated 3 pounds 14 ounces.  After the ultrasound, we got a little lunch break before meeting with the perinatologist.  We ate at a super delicious place called Hominy Grill.  Their specialty is shrimp and grits, which I didn't get because I have a cheese aversion (yeah yeah, I know) and a lot of places seem to like putting cheese in their grits.  What I *did* have was pan-fried flounder over tomato jam, with sides of mashed sweet potatoes and okra/tomatoes over jasmine rice.  Oh! And lemonade!  That was some good stuff.  If you're ever in the Charleston area, I'd highly recommend this place.  Jonathan was pretty sure they'd been featured on the Food Network at some point. (The fact that I just spent half a paragraph on what I had for lunch makes me think of the letters that my mom used to write to my grandparents when she was in college.  They usually included an account of what she had for breakfast that day, as well as what she was wearing.  Cereal for breakfast and wearing purple hot pants, for example. So cute.)

After lunch we met with Dr. Chang, the perinatologist.  I loved him.  Really smart guy who wasn't afraid to give a definitive answer to a question.  After a discussion on the pros and cons of a vaginal delivery (I had a C-section with Henry, so it'd be a little trickier than usual), he got us set up for a C-section on June 7th.  So now Bee has a birthday!  He didn't seem to think we'd need to come to Charleston much before the day of the actual birth, which is nice since I'm trying desperately to conserve my FMLA hours at work.  (Actually, what he said was, "It might be a good idea to come down the night before the surgery."  Which I found hilarious, since we'll be coming from 3 1/2 hours away.  Yeah, I'd say we probably won't be coming down the day *of*.)

The next appointment was with Dr. Streck, the pediatric surgeon.  Before he came in, we got subjected to to meet a sweet medical student who, bless her heart, was really trying.  I'll spare you the gory details, but the one thing I have to mention that's starting to drive me batty is how every new provider we meet feels the need to gauge my level of understanding of CDH.  I may or may not have rolled my eyes when she asked me this, but I launched into the "Various guts in the chest cavity, lungs can't develop right, lotsa problems after birth" spiel.  She then proceeds to ask me if I understand the anatomy of what's going on.  Well I sure hope so by now, sweet-little-medical-student-who-was-really-trying.  

So *then* the surgeon comes in.  Let's just say he was worth the wait.  When I compare my conversation with him to the conversation I had with the surgeon in Greenville (who, by the way, is a great guy and a wonderful surgeon--he did a minor little surgery on Henry about a year ago), it was like night and day.  This guy could do a CDH repair in his sleep--he had even done one the day before.  He just really seemed to know what he was talking about.  He might not be the one who actually does Bee's surgery--just depends who's on call that day--but he said that all the pediatric surgeons at MUSC have a standardized way of caring for CDH babies.  They all have the same criteria for putting a baby on ECMO, for example.  Anyway, I won't go into everything he said, but after talking to him, I felt very reassured that we're making the right decision to deliver in Charleston.

We also got a brief tour of the NICU, where Bee will go once she's born.  I had a brief stint a few years ago as a NICU nurse, so I knew what to expect as far as the rows of isolettes with lots of beeping monitors, IV fluids, ventilators, etc.  Jonathan was a little overwhelmed at first, but I'm glad he got to get the visual of what we're in for.

So that was Wednesday.  It was a really busy day, but I'm so glad we got to meet all the Charleston specialists.  It was good confirmation that we're going to the right place.

Thursday morning Jonathan and I had breakfast with Rose, baby Jude's momma (check out their blog).  To say that this family has been through a lot would be an understatement.  Being a parent of a CDH baby is like being in a club that you never wanted to be part of.  But club members are few and far between, which is why it was such a blessing to talk to somebody who's been there (and is *still* there).

Our last stop was a lunch visit with Melissa from Cross Bridge Ministries.  This is an amazing organization that ministers to families who have babies or kids in Charleston area hospitals.  Their goal is to help families with whatever needs they may have while living away from home.  Our major need is for housing, since Bee's NICU stay is likely going to be at least a couple months.  Melissa assured us that we would have a (completely free!) place to stay while we're in Charleston.  Amazing.  Thank you, Lord, for this ministry.

So there's the fairly lengthy Charleston update.  If you've made it this far, you deserve some pictures :)






Please continue to pray for our sweet little girl.  Thanks, y'all.

6 comments:

  1. Sweet sweet baby girl!! I am glad you got some sense of peace from your visits. Praying for you always!!

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    1. Thanks Abby! Praying for you and Parker too! We have to get these two little turkeys together once this craziness is over :)

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  2. Those pictures give me chills!! I'm more than just a little jealous that you got to meet Rose and so thankful you felt a peace about this medical team. Glad to have a date to pray for. Sending our love and always lots of prayers.

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    1. Thanks Chrissy! Rose is definitely a rock star :)

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  3. So I just came across your blog. I am another CDH mama in Charleston at MUSC. Rose and I are friends and the repair that Dr Strek did recently was on my little Lily. If you need to talk about anything, I am currently there as well. Hang in there!

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  4. Hi Liz! I just found your blog yesterday too--many prayers for you and baby Lily. She's a cutie :)

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