Wednesday, November 27, 2013

Is it raining in there?

Its raining out here too!

We've had a reprieve from the cold weather, the price for which has been all day rain and grey skies.  But I know the weather report is not what you came here to read.

We had an appointment today, but actually went in on Monday instead.  We had the usual round of monitoring along with an extra ultrasound.  Everything continues to look great.  Miss Zelie is now measuring "ahead" by two weeks.  Meaning, at just 38 weeks she's showing herself to be as big as a 40 week old babe.  That's good for her.  She has a lot to contend with once she's out and being bigger will help her.  Its not quite so great for Mama, who is finding that all her insides feel bruised and unbalanced.  

However, there is no sign of an early delivery so Mama is having to content herself with marking off the days remaining.  There are no more appointments between now and her scheduled delivery, so we really are in the final countdown.  Provided nothing dramatic happens, you can expect an update from Daddy here on Tuesday.

Since there was no appointment today, we did some exploring outside of town.  We had a super yummy breakfast at Kane's dognuts.  Then we wound our way to a little town called Peabody, that had a big mall and a great indoor playground.  J played until he was ready to drop.  Slides, cars, tunnels, lots of other kids and a wonderful spongy floor kept him busy for about an hour and a half.  That and a nice warm lunch made for a really excellent nap time.

Now we are all snug inside.  Nana and daddy are competing at cards and J is using dominoes like legos.  Not a bad way to enjoy the afternoon. 

Happy Thanksgiving one and all!  We wish you a warm, happy holiday surrounded by love.  That's certainly how we will be spending ours.



Sunday, November 24, 2013

Saturdays are for haircuts

So J and I decided to go get our hair cut today. There are several good barbers around and we went to the closest one. It was great -- J wasn't very fussy about it all, which was very surprising. J fell asleep on Nana's shoulder before my haircut was done.


Mama says we both look dapper.  Hooray!

Friday, November 22, 2013

Week Two Round Up

Week two?! Can you believe that?  I also owe you an apology.  It seems we left off with a note about Zelie having dropped and just let that hang out there.  I promise it wasn't deliberate, Mama is just tired, tired, tired.

So let's catch up, shall we?

Wednesday was our Doctor's appointment.  We started that with a very positive fetal monitoring session.  As long as Daddy read aloud to us, Miss Z stayed active and registered lots of good kicks and twists on the monitor.  That makes everyone happy.  The doctor herself was satisfied with our weight and overall health.  She found no signs of impending labor, but reminded us that she knew we are here expressly for the purpose of having this baby, so if /when something changes she expects us to come right in without hesitation.   Yes ma'am!

Wednesday night Daddy and Joseph had some boy time so that Mama and Aunt DD got a nice evening out before DD had to head home.  It was the first proper Italian meal we've had here in Boston's Little Italy and wow.  Just wow.  We were told that the food here would be more than a small consolation in our struggles.  We were told truly.

Thursday we said goodbye to Aunt DD.  We will miss her, but we are so glad we got to have her with us. We love you DD, and we are glad that you found your car!!  And who comes next but Nana! Thursday afternoon was mostly helping Nana settle in and letting Jospeh show off all the best hiding spaces in the cabinets.

That brings us to today.  A rainy, wet, clinging sort of a day it has been too.  But we didn't care.  We did a little sightseeing by car, got a little lost and then found again.  We had a really delicious lunch that included some Chicken Tinga (Aunt Honey we thought of you!) and spent some time at the Basilica of Our Lady of Perpetual help.  What a beautiful, prayerful place.  It did Mama's heart good to come in from the cold into the quiet dark, illuminated mostly by an alcove where adoration was taking place and from a beautiful shrine to Our Lady's Perpetual Help.  Last of all we paid a visit to the Boston Children's Museum.  Fun! and Fun! If we lived here, we'd be regulars. We played in a fabulous tree house, visited all the turtles and then there were ....

Bubbles!  Oh man!


I hope everyone's Friday has been as much fun as ours.

Moving into the weekend there is little more to tell.  We hope to have a bit more fun exploring the city.  Daddy is once again delighted that there is no wake up call to move the car tomorrow.   Our next appointment is Wednesday.   And unless Zelie decides to show up early, something we hope for but cannot predict, that will be the time to check with us for the next bit of baby news. 

In the meantime I want to say once again what an amazing experience this has all been because of all of your continued love and prayers.  We see the wonder of that in every day we spend here.   Thank you.  Thank you for the part you have each played in getting us here, in sustaining our patience and our courage, in reminding us that this, all of it, is love visited on us. 



Tuesday, November 19, 2013

Holy bouncy balls, Batman!

So I'm no expert on these things, but Ms. Zelie is sitting a lot lower today. S and DD were talking about it today and I'll be interested to see what the hospital visit tomorrow shows. S and I can't wait to meet little Zelie, so things like this get me really excited.

J went out and about with DD and got a light up rubber bouncy ball that he is just loving. S and I went to noon mass today at St. Leonard's, which was very nice. J has been so good, with only a few two year old tantrums here and there, but no total meltdowns. Today we worked through one and walked like a big boy instead of being carried, which lead to the joys of kicking leaves.

I was told before this trip that there is a smell of fall up here and I have to agree. It is subtle and earthy like the smell after rain. It smells like leaves turning color.

The last thing that I have to say is that we are LOVING the accents up here. There is quite a variety and they are all marvelous. I've stopped making terrible attempts to reproduce it -- I prominse.

Saturday, November 16, 2013

Thursday, Friday - Happy Days! Saturday! What a Day!

...groovin' all week with you  (If you want to hum the rest, I'll wait.  G'head.)

Can you believe its been a week already?!?!   I know we are a little shocked about it.   Still, it has been a week.  Here's how we finished it out.

Thursday was the last of our  days of consults at the hospital  We met with Neonatology at The Brigham and got a detailed overview of what the logistics are going to be for Zelie from the time she is born until she is recovering from her back surgery.  She'll spend one, maybe two days in the NICU at The Brigham and most likely go from there directly to the OR at Children's.  Once the surgery is over, she'll head to the Children's NICU for recovery and eventual transfer to the Neuro floor.  We also took a tour of the NICUs at both hospitals and received lots of assurances from nurses in both about our ability to see our sweet girl, both before and after my own discharge from The Brigham as well as all the rules and procedures for other visitors etc.  Finally we met with Fr. Winchester, the Chaplain who will baptize Zelie after she is born, but before her sugery.  A very kind and interesting fellow, he helped us round out our day with a bit of a coffee break.  We were once again reminded of just how carefully Providence seems to have arranged this whole trip when he, quite off hand, mentioned that Zelie's baptism would be recorded at the Basiclica of Our Lady of Perpetual Help.  Of course it will be!  Where else?

Friday was the changing of the guard.  We said goodbye to our wonderful Aunt Honey, without whom we never would have made it even this far.  Honey, we hope home was everything you needed when you finally got there.  We love you!   And, we picked up our Aunt DD for the next leg of this Boston tour.  J was a little standoffish at first, but once he realized that DD would share her iPad and can dance to Hickory Dickory Dock, he was unable to remain resistant.

Today has been a fun one!  For one thing, Daddy didn't have to get up to move the car before 8:00.  Hooray! (Parking here has been its own adventure.)  We were all able to get a little extra sleep, have a little extra breakfast and do some exploring.  We found a new shopping center, which came in handy. But far more fun was the farm!  DD found a little place not too far outside of town that was Apple Orchard, Country Store and Petting Zoo all rolled into one.  Picturesque and full of goodies, it had a little something for all of us.  Most exciting of all though, there were sheep!   J was completely delighted.  Sheep!

Then mama took a nap and everyone else went wandering through the neighborhood.  An adventure from which they have just returned.  So, time to wrap it up here.

Have a wonderful weekend, one and all!




Wednesday, November 13, 2013

Hospital Wednesday

As I promised, here are the highlights from today's many adventures.

We had a fascinating visit with Dr. Warf, the neurosurgeon. The upshot of which is that he is completely on board with avoiding a shunt if at all possible, and it certainly seems possible. Interestingly he spent some time discussing with us the possiblitity that we may need to do nothing whatsoever. While Zelie's ventricles are enlarged, that by itself is not necessarily a cause for concern. The previous approach to shunting every child with fluid enlarged ventricles has proved itself a faulty medical fashion that resulted, at least some times, in causing problems where there might otherwise have been none. According to him, approximately 30% of kids with SB do not technically need intervention. The cause for concern comes if, and only if, those ventricles continue to build pressure in the head after birth. So, after her initial back closure, we will spend some time and effort just monitoring her head circumfrance and other markers to determine if more is needed or not. If it is necessary, the ETV/CPC procedure has a 70% success rate in babies born with SB. He could see no reason that Zelie would not qualify for this procedure, and had a great and calm confidence that if it were needed, it would be the procedure of choice.

This is excellent news. SB has enough challenges without the burden of shunt dependence added in. This is why we came, and we are even more satisfied than before that this was the best possible option for us. There was some discussion of follow up, which is a bit complex yet. We will need to determine which SB clinic near us will best serve us going forward, but follow up with Dr. Warf will also need to happen more than once within the first six months if we do, in fact, undergo the ETV/CPC. More on that as it develops.

We also met with Maternal Fetal Medicine today. We discussed delivery options, care between now and then etc. There are several considerations that went into that discussion. Amoung them are Zelie's size, which they estimate to be over 7lbs now, the increased lesion size, my age etc. While vaginal deliverey was a possiblity, ultimately we all felt most comfortable with a C section. That was scheduled today for 12/3. While I remain convinced that we will go into labor naturally before then, I appreciate their firm conviction that Zelie should have as much time to develop naturally as possible. She has a lot to face once she gets here! We are also surprised at their estimation of her size, though  it certainly explains some of the issues we've had with greater discomfort, etc.

If you are keeping score carefully, you will realize that the MFM doctors are at a different hospital than the docs we are working with for Zelie. Happily our experience with this new contingent has been just as positive as our experience with those at Boston Childrens' Hospital. The level of expertise in dealing with atypical diagnosis deliveries, and the caring, engaging manner in which they go about it are exceptionally reassuring.

While we were off running up and down hospital hallways J was exploring the city with Aunt Honey. They made friends with a meter maid, discovered a new church and just generally enjoyed the crisp weather. We came home to a sweet, well exercised and rested guy who has been full of antics ever since. That brings us to the day's end.

Tomorrow we will be back at The Brigham for a monitoring session, a tour of their NICU and the NICU tour at BCH that we never quite got to today.

Happy Wednesday one and all!

Tuesday, November 12, 2013

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

Sunday, November 10, 2013

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

Friday, November 8, 2013

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!

Monday, November 4, 2013

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.