How good are you at waiting?

Baby Zelie will be here soon. We did all the prep and so I am sitting here in scrubs just waiting to be admitted into the OR. Very exciting. I got a BIG nap today, which is just what I needed apparently. Ever wait in a quiet place alone? 15 minutes seems like forever. Thanks for all the love, prayers, and support.

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.

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!

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. 

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.

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!

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!