The soda goes here

J is having a big time here in Boston. He is currently emptying, stacking, refilling, and restacking our soda cans from the 12-pack case. The biggest hits in terms of toys are the tools and the iPad keyboard. We've developed several games of racing around the main floor of the aparment and bouncing around his mini soccer ball. Don't worry about the neighbors, we are over the entryway and share a wall with the stairwell.

J has zero desire to watch any cartoons on the television and promptly turns the tv off if we turn it on for him (or us).

Snoopy is in the van, but when J has him he hangs on fiercely. Charlie Brown does not get as much love and is hanging out by the toy bag. J has counted as high as 10 today and was asking to be tickled. It still amazes me that we are all here -- what a crazy adventure!

Settled In

My apologies for the silence yesterday.  I know many of you were eager to hear how our first official day went.  We are ever grateful for your interest but we had an all day hospital day and a moving day and a first-day-in-a new-town-and-where-do-they-sell-pizza-here? day all rolled into one.  By the time we were still enough to update you, we were reduced to grunts and snores.

First things first.  All went well at the hospital.  We arrived at 8:15 and left about 5:00.  In between were lots of imaging and testing and a handful of consultations.  We were able to confirm all we knew before.  Little Zelie's heart is beautiful as are her feet, her mouth, her kidneys and lungs.  We can absolutely demonstrate that the SB is the one and only issue.  Also, thanks to some pretty cool MRI images, I can demonstrate that she is, indeed, an acrobat!

As far as the SB itself goes, they believe the lesion on her back begins slightly higher than we previously thought.  Which in all practicality means nothing.  They could be wrong, and admit that freely.  But even if they are not, what matters is not so much the position give or take, but which nerves have actually been exposed.  And, of course, there is no way to know that until after she is born, recovered from surgery and can be observed over time.  Her first and second ventricles have become further enlarged, and again, while this is important to her surgeon, it is only worthy of note at this point, and not a reason for alarm.  Particularly in utero, between the capacity of her skull to expand and the neutralizing effect of the buoyancy of the amniotic fluid, the impact is minimal at this time.

We met with the developmental pediatrician.  A wonderful doc who has devoted about 30 years of practice to dealing with SB kids in particular.  By and large that conversation simply affirmed what we have been learning on our own and sharing with you.  Lots of things are possible.  Some, the more serious possibilities are less likely.  Some things that are more common, neurogenic bladder/bowel, some ambulatory delays, are much more likely.  She provided a very well rounded overview, and offered to us many, many resources as time goes on.

She also gave us a quick rundown of what we can expect in the hospitals.  The short version there is that we can anticipate four days in the NICU for Zelie and four days at The Brigham for me.  After that, Zelie will most likely go to the neurology floor and there one of us will be able to stay with her 24/7.  She also confirmed that there should be no issue with having our sweet girl baptized before her first surgery.

As for our moving day -

We got into the apartment around 5:30 last night. and are quite happy with it.  It is big enough, comfortable, clean and well supplied.  If there is a drawback, it is all the stairs. But! Everything has stairs here.  When there is no room to spread out, Boston not exactly being a town of ranch houses, you go up.  I'm sure we'll all survive, but if you plan on visiting us know ahead of time that the bathroom is up a stairwell not unlike those I've climbed in lighthouses.  You've been warned!

The neighborhood itself has completely charmed us.  Little narrow, curving streets that wind into churches or bistros, bars or grocers.  The Society of St. Joseph on one corner and the official "Connah Store" on the other.   The only thing more delightful has been the people.  We're especially grateful to the firemen across the street for a fantastic pizza joint recommendation and the pizza bar bartender for directions on where to get milk.   Everyone, and I do mean everyone, has been warm and kind.

The weather is fairly mild.  We woke to snow flurries, but they passed by mid morning.  We're not wandering around without jackets, but we aren't shivering indoors either. That day may come but it is not today.

Tomorrow is another day at the hospital.  We have consults with lactation, neurosurgery, Maternal Fetal Medicine, a tour of the NICU, and another round of ultrasounds on the schedule.  We also hope to meet with the Chaplain at Brigham and Women's somewhere in the mix. I anticipate we will be late and long coming to the end of it all.  Still, perhaps not so weary as yesterday.  So keep an eye out.  I'll do my best to see that some manner of update gets published out here before we lumber off to bed.

And now, gentle readers, it is nap time - at least for pregnant ladies - but I highly recommend it for anyone who can manage it.

zzzzzzzz

Yankees, Yankees everywhere

Well we made it. The last portion of our trip was marked by an impressive display of fall leaves. I'm going to take J exploring a little this afternoon before the cold sets in. Big day tomorrow. Signing off, Mr. K

Greetings from Emporia

Hey everybody!

Mr. K here, updating you from our first stop on the way to Boston.

Day 1 on the road was uneventful, even though 3:30 to checkin seemed to last forever.

J was good and spent his time watching Peanuts holiday specials and a few episodes of Shaun.

Gorgeous weather today.  It was was cool and crisp with a smattering of light wispy clouds.

Hotel phones are disconnected and J has deposited them on the bed now.

Next stop New Jersey!

Tell your wife to update the blog

Yes, I'm looking at you Grandaddy B!

Here's our update.

We have been to Mass and confession and managed to get ourselves on prayer lists from here to Spain.
We have rented a small apartment in the North End of Boston for our stay, and made hotel reservations for the trip up.
We have secured travel arrangements for everyone who is coming to stay with us and help with J.
All our doctor's appointments have been verified.
Our insurance company has been updated and all appropriate waivers and overrides have been set up.
We have supplemented our family's supply of warm undies, socks, hats, coats and such like.
We have ensured that we are prepared for any gadget, battery or techno glitch or shortage that may befall us. Because that is what our Daddy does!
We have enough car seats, movies and music to span the road trip and home again.
Everyone who needed it has had a hair cut with a minimum of tears.  J didn't do too badly either.
We have verified all the members of K's friends and fan club who are available to her in our absence.
We've established a steady supply of pet food.  We got a few things for K too!
The vet has been visited.
The yard has been tended (Thanks Uncle R!)
An early birthday celebration has been had for Big Daddy and gifts and (very wee) plans are in place for J.
We are part way through the laundry schedule and, provided Mama's energy holds out, shouldn't have to travel with any dirty clothes.

We are doing pretty well, no?

All in all, we are set to leave Friday and plan to make something of a leisurely trip of it, arriving Sunday.  We are excited to be so close and eager to get going.  We will, of course, continue to update you here as we learn more from our doctors there.  If you have any questions for us, please put them in the comments.  I promise we will answer you there.

Again, our endless thanks to everyone for everything you've each done for us.  For your prayers, for your questions and concerns, for your suggestions of where to eat when we get there and your advice on how to minimize the nightmare of parking, for your donations, for your phone calls, for all the gifts of time and love we have received we are truly and overwhelmingly grateful.

A mix tape! We're gonna need a mix tape!

We might even need two or three.  It's a long drive to Boston.

Yes, Boston.  Bean town.  The Hub.  That's where our little Zelie's adventure is taking us next.

You see, here at home there simply are no spina bifida specialists.   We've been in the the care of several, very competent and compassionate doctors.  We've met more who will be available to us here to help Zelie after she's born.  But while they have the right letters attached to their names and the basic training to manage what needs to be done, none of them specialize in Zelie's condition.  The more we thought about that, the more dissatisfied we became.

The truth is, the first week or two of her life is very crucial.  They will involve serious, complicated neurological surgery on both her spine and her brain.  A doctor who is "qualified" is not the same as one who specializes in and who has many decades of experience with exactly what we are facing.  We, like all parents, want Zelie to have the best start we can possibly provide for her.  What happens to her in those first days will set the tone for the rest of her life.  We feel entitled to be picky!  We also are greatly blessed to have really wonderful insurance that allows us to act on how we feel.  Boston Children's Hospital has the premier pediatric neurosurgeon specializing in spina bifida and the hydrocephalus that typically comes with it. So... its to Boston we go.

We expect to leave around November 8, and stay until she is born and released from the hospital.  Of course, we can't predict when that will be exactly.  We anticipate staying in Boston approximately a month.  Its a big undertaking.  There are a lot of logistics in setting up care for our house here in town as well as for Miss K, who will remain behind.  J will go with us, and so there is care for him that has to be secured and included.  Where to stay, how to get there and back again ... its a lot.  And I don't know if you've noticed, but November 8 is just around the corner.

Yikes!

So, first and foremost, we covet all your prayers and your love as we set out on the road.

Secondly, if you have questions about the trip or the procedures, feel free to ask them in the comments.  I'll do my best to answer them.

Last of all, several of you have asked us what we need for Zelie.  The truth is, as far as baby gear and supplies go, we need nothing.  But this trip, which we view as vital, is going to be a huge expense.  Insurance will cover the worst of it, but won't help with things like travel and lodging.  If you really would like to contribute to Zelie's beginnings you should know that we are going to start a little fund for her.  We very humbly ask you to consider placing your gift in her fund, rather than in a dress or a toy.    I'll have a button on the site before the weekend, to allow you to do that if you feel so inclined.

I have to admit, it is a little scary, but we are all also very excited.  Its good to have made the decision, to have work to do to put it into place and to be able to look at the calendar and see just how close we are at last.

Thank you for all your continued support.  We've simply been amazed and overwhelmed by everyone's generosity.   Know that we are grateful for all of you in our prayers each day.

The Sound of Silence

As I predicted it might be, things have been a bit quiet on here.   That's good!!  We are now at 32 weeks and counting.  We've been twice to the doctor since my last post and things are going along very normally.

Miss Zelie is up to approximately 4 1/2lbs, and continues to grow on track.  The ventricles in her brain have not become any more enlarged over these last few weeks.   That isn't an indicator of things to come, but it is comforting to know that, at least for now, she's not dealing with any increased pressure.  At our last visit she earned herself a "perfect score" on her biophysical profile.   We will be back there next Tuesday to see if she can repeat that performance.

We do have a couple of  possible plan changes in the works, but nothing definite yet.  Once we have some specifics, I'll certainly be posting them here, so don't forget to check back every once in awhile.

In the meantime, we continue to be overwhelmed by, and deeply grateful for, all the love and support that continues to come our way.  Thank you for being with us on this road.