Brand spankin' new...

For anyone following Jacob's story who is not local.... Jacob's surgery will be in a brand new facility. We will not be headed to those old familiar halls that we spent so much time in in the first few months of Jacob's life.


I don't mean like relatively new or just new to us. No, I mean like new-new..... like clear plastic film still on equipment screens new. As in, the first surgery is scheduled May 3rd and Jacob's surgery is scheduled May 7th. 

The new diggs are adjacent to the old place and includes an all new children's center. It has been the topic of conversation with all of Jacob's doctors, nurses, etc. for the past year (they are all excited beyond words).  We, of course, have people on the inside. We hear it's amazing. We have a friend who has been giving tours of the children's center portion in the last couple of weeks and she reports that it's beautiful, artwork is stunning, rooms are roomy and have great views.


Jacob's uncle, who works there, is knee deep in final preparations as I type and before most of us will be awake tomorrow - before most of us are reading this - he will be fearlessly helping to lead his unit (the first one out) in a well choreographed convoy of equipment and critically ill patients down corridors, across pedestrian walkways, and through the doors into the new medical cathedral that Hopkins built. The whole place is moving in one day (can you imagine *that* day at work?).

Either way...it will all be moved by the time we get there. AND it will be a hospital that we've never been to before.  In those new halls, we're not veterans.  We're not frequent flyers. We're not even sure where to go to check in. How cool is that?

Anyone interested in more about the jazzy new children's center....here are a couple links...

Video - Children's Center  ...and...  Children's Center Website

Two weeks and counting... time to quilt!

Well, we are two weeks away from Jacob's heart surgery and we (Jacob's parents) are busy trying not to think about it.

We all manage anxiety differently. If we could all channel it as productively as Jacob's Grandma G does, the world would be a better place. She decided it was the perfect time to quilt.  And quilt she did.  She made him an adorable heart surgery quilt. Just the right size for rolling around on and for taking with us to the hospital.

Quilts have long been made to commemorate significant life events and Jacob is lucky to be armed with the warmth of this one as he and his family venture through the next few weeks.

Thank you Grandma G. It's wonderful!

Head's Up!

This week Jacob suddenly (seemingly overnight) is starting to see things from a whole new perspective. 

Getting that noggin off the floor is big stuff.... and a long time coming...  go baby go!

And the view of those old familiar toys from a vertical position...  crazy cool. 

Happy Friday ! 

Cardiologists, Urologists, and Nephrologists... Oh My!

As you might imagine.... Jacob's "team" is in full gear dotting i's and crossing t's. This week we had a follow up with his cardiologist to discuss the cath results in further detail and talk about the upcoming surgery.

Urology was also on the list this week which went well. Per the doc we aren't going to fuss about the fact that he had two UTI's ...(not until the kidney stones are resolved since they can be a major contributor of bacteria and might likely be the cause). We like when docs don't want to fuss about things. We have enough to fuss about. Plus we haven't seen a UTI for weeks so we can always hope it stays that way.

Next up nephrology and neurology... and based on the email traffic today between the cardiologist, pulmonologist, and GI...I suspect we will be seeing GI soon too. Just making sure there are no concerns for his surgery.

Line 'em up. We're ready. Jacob has no qualms about tooling around Hopkins in his stroller visiting all his friends.

Decision Made / Heart Surgery Scheduled.... May 7

We have a date. Jacob's cardiologist and the surgeon met with the cardiology team. Jacob's case was discussed. As a result, they are recommending that we move forward with the heart repair and that this is probably the best time to do it. Open heart surgery here we come. May 7th, it is.

Deep breath.

Some details that may or may not be helpful. We are told there is a scale that they use to convey the complexity of a heart surgery, one (1) thru six (6). Six being the most complex surgery they do, one being the simplest. Jacob's surgery is a 1. I think that's supposed to make us feel better.

The surgery itself will last about 3 hours. Jacob will be in the hospital about a week. By most estimates and projected experience, when he comes home a week after surgery he will be largely back to being his baby self.

That's what we know.

In other news, Jacob is a busy little boy. Some small window on how busy.

Since his heart Cath 2 weeks ago, he has...

• been to see his GI specialists (he had a minor infection at his g-tube site which we got some meds for and it is A-OK now)
• had an appointment with the swallow specialist (she says he's doing great with his eating by mouth practice bites and we are to keep doing the same, she doesn't think we should push him until we get through the heart surgery)
• had a VCUG test (this was to test for renal reflux which he does not have : yay!)
• had a renal ultrasound (this was to check his kidney stones which he does still have two teeny tiny ones : follow up with urology and nephrology in the next 2 weeks)
• traveled to Florida and back....(worthy of its own blog post for sure which I am working on!).

While in Florida, he...

• wished his great grandma a happy 90th birthday
• met many of his wonderful extended family, including little cousin Chloe (a.d.o.r.a.b.l.e)
• got to see amazing friends and neighbors of his aunt and uncle again who all embrace and spoil him as their own
• got in the pool for the first time (fun!)
• learned to blow raspberries
• got better (sort of) at keeping his glasses on

[Also in that 2 weeks Jacob's mom traveled to Lincoln,NE and back for work while Jacob's dad held down the fort alone balancing work and Jacob appts single handedly for 3 days. Something akin to leaping tall buildings in a single bound. And with no cape!]