Well, we're back safe and sound from our trip to Charleston for my first appointment at MUSC. Overall it was a great day and we met some wonderful people! The staff at MUSC truly was amazing -- very nice, knowledgeable and informative! All of them took the time to provide us with the information we needed and answer all of our questions.
Our trip started Monday night when we went to view FOUR rental properties. It was a L-O-N-G evening but I'm happy to say LO behaved the entire time -- for the most part! Three of the four were 2BR properties within a 3 block radius of MUSC. The location was great, but the size was way too small for our needs. The fourth and final property we looked at was a house in a residential neighborhood about 10 minutes from MUSC. While we don't care for the distance, we think it's doable and ultimately would give LO the most comfort and familiarity with her usual routine. The house essentially has 4 bedrooms, 2.5 baths and a lovely yard where LO can play. I must admit I loved the granite counter tops and stainless steel appliances in the kitchen, although I can't imagine I'll be spending too much time in there. We're very happy to have finally made a decision on this so we can move forward with the rest of our planning and decisions for our time at MUSC. Hurray for progress!
Unfortunately, Monday night at the hotel turned into a bit of a nightmare. LO was apparently in NO MOOD to sleep. At all. Like, all night long. She was in her pack n' play in the room with us, and for whatever reason, refused to go to sleep. We ended up putting an Elmo DVD in around 3AM, which kept her attention for a short period. Then it was more fussing and whining. Then we did the unthinkable: we put her in our bed with us. This was the FIRST TIME we've EVER had her (attempting to) sleep in our bed. We just never wanted her to get into that habit. But we were desperate. We needed to get up at 6:30 AM so we could be at MUSC for my 8AM appointment, so sleep was so desired, but yet never attainable. Hubs ended up going into the other room and firing up his laptop around 5AM to get some work done, while I continued to try to get LO to get at least a tiny nap in before our marathon day at MUSC. Finally, around 5:30 AM, she fell asleep next to me in bed, and managed to get a good hour and a half nap. It wasn't much, but it was better than nothing. I think between the three of us, we probably had a combined 4 hours of sleep that night. NOT awesome.
Tuesday morning we were up and on our way to MUSC, and managed to make it to our 8AM appointment on time! Woot! The staff was super nice and the PC (Pediatric Cardiologist) we met with after my ultrasound/echo was extremely kind and informative. He explained everything to us in detail, which was a huge blessing. He explained that the echo definitely showed the HLHS diagnosis, and that there really weren't any unexpected surprises. He said that Chase isn't exactly a "textbook" case because there are 2 things the echo showed that aren't common in HLHS babies, but that at least one of them might actually work in our favor because it is allowing his aorta to grow larger than what they typically see. The other issue he wasn't 100% sure about but said the echo they do after he's born should be clear enough to determine exactly what's going on. This issue slightly adds to the complexity of his surgery, but it isn't a huge deal or anything that changes the overall game plan for his surgeries, etc. We were very pleased with what we heard and with the answers to our questions.
I then had the joy and privilege (please sense sarcasm here) of having an OB appointment with the "Prenatal Wellness" department. It was a few blocks from MUSC, so we had a nice walk over there. Seriously, once we got in there I felt like we were at a free clinic. It was weird. The waiting area was full of some unusual characters! But the staff was really nice and I was very pleased with the ultrasound tech. She got some GREAT pictures of Chase:
Here's one of his profile. Isn't he a cutie?
Here's a 4D image of his face. The cord was floating around over his right shoulder, and I think he had an arm up by his head, too. He definitely has mommy's pouty-face down pat (as does his big sister!).
After the OB appointment, we headed back to MUSC for a tour of the PCICU. It was incredible to see the area where our precious son will spend the first few weeks of his life. It really was a wonderful facility and I am confident my baby will be in the best care at MUSC. Such an encouragement!
We ended our day on a fabulous note -- we got to have lunch with Erin and Milo Wilson, whose sweet baby Josiah is currently recovering in the PCICU from his first HLHS surgery. This wonderful family lives in the same area as us, and have been at MUSC since May when Josiah was born. If you have time, you need to read her blog. She is a great writer and has shared a lot of insight into her family's journey with HLHS. Hubs and I had such an amazing time with her and Milo -- it truly felt like we were catching up with old friends! They were very easy to talk to and are such a wonderful resource for us since they've "been there, done that" and can give us some insight into what we can expect going forward. It was such a blessing to meet them!
So, on a final note, I will mention that it sounds as though my induction will be scheduled for Monday, October 26th. I'll check into MUSC Sunday evening, October 25th to get the ball rolling, but the induction won't officially begin until Monday morning. So hopefully, God-willing, at some point on October 26th, hubs and I will be the proud parents of our sweet baby Chase! Please keep us in your thoughts and prayers as we continue to make the necessary arrangements for our stay in Charleston, and for peace and strength as we travel this uncertain journey that lies ahead. We are confident God is in control and will see us through!
Great report! I'm so glad you found a place to stay, too.ReplyDelete
Sounds as though you guys have it all under control. The house sounds great and so does MUSC. I'm sure 10/26 can't come soon enough. Thanks for the report.ReplyDelete