No more town lines!

Every place has its quirks. You won't find city limits in new England, but rather town lines. I think it's silly l, but there it is.

Finally this big adventure takes us toward home, but only so far as Pennsylvania. Happy new years eve from our clan.

I'll think of a mermaid lagoon!

All it takes is faith and trust.  Oh! And a little bit of Pixie dust.

Which is to say, we got a very good report from our very good doctor today.  A few measurements, another series of images and some discussion of follow up, and we were sent on our way without reservation.

Which means...  HOME!  Tomorrow we start the trek home.  It will take a few days.  Travel with little ones is not best done at a grueling pace, and we plan to stop on a couple of different days to visit family along the way.  But tomorrow we leave and start heading back. The van is packed and the early alarms are set.  Daddy and I are so excited we are almost cranky about it all.

There will be more entries here as we travel.  There is a bit more to say, but right now I have to go round up some of that Pixie dust.  C'mon everybody!

The Red Lights, They Mean Nothing

So this actually happened a few days ago, but I got honked at for stopping at a red light. Then I was quickly passed by said honker. Honking is quite normal. Now, Boston driving really hasn't been that bad, but there are quite a few odd things that I still don't understand. Red lights are run by taxis and citi buses during the "pedestrian time" if no pedestrians are present. Also random U-turns and three point attempted U-turns are quite common.

J is ready to be home. We're at roughly three melt-downs a day. They start with as little as put that thing down or stop climbing behind the TV. Aside from the toddler stress, he's doing quite well and even got to run around the mall kid area like a maniac yesterday. He even built up enough confidence to go down the 2 foot slide head first a few times.

Momma is doing well. She is also ready to be home. She went ahead and packed up 3 suitcases today and I packed them in the van. I guess I'm ready to go home too.

Now, the lady you've all been waiting for, Ms. Zelie. She is doing great! All cuteness all the time. She makes great faces while napping including smiles, pouts, "oh-my" faces, and kissy faces. She's eating well and sleeping well. She got a belly button for Christmas! It took forever, especially compared to J, but the wait is over and the belly button is super cute. It's an innie. Now the belly button is there she got her first proper oatmeal bath treatment, which she quite enjoyed.

Merry Christmas!

A quick post here to wish each of you every blessing of this sacred season.  As I have said before, we would never have gotten this far if it were not for the gift of so much love and support.  Thank you!

For those of you who have asked, no, we didn't expect to spend Christmas here when we set out.  But yes, we have had a wonderful start to the holiday.  We attended a beautiful vigil Mass last night and had a magnificent dinner in the warm embrace of friends.  There was good cheer in word and glass a'plenty.  Today has been still and peaceful, cuddled up with kids and sweet treats.  Now that the little ones are napping, Daddy and I are happy in the quiet, amazed at the beauty of the life we've been gifted and gleefully planning the trip home.

Merry Christmas, one and all.

C'mon Teddy

...we are busting out of this joint!

Yesterday, after she was released from the postop unit, I came back up with Zelie to her room and got her settled.  She was still sleeping, so I gave her a kiss and headed out for a bit.  When I left her, she was peaceful and alone.  Apparently she looked a little too alone to someone because when I came back this guy had crawled up into bed with her.

We have no idea where he came from, but are glad he was there to keep our girl company.  

Today they discharged us (at last!!!!) and since he didn't have anywhere else to go,we brought him along with us.  

I hope that you are all home and warm tonight with someone sweet to snuggle.  I know we are and we are immensely thankful.

Common sense for driving in snow

I know a lot of you are worried about us driving around in snow and ice conditions, but I'll have you know I did some research and it confirmed what I already thought; just use common sense.

The first rule of driving in snow and ice is simple: The less time you spend out in ice and snow conditions, the safer you are.
Drive faster to reduce your risk, otherwise you'll just be spinning your wheels.

The second rule is brake like you mean it:
Applying the brake firmly and quickly let's it know you mean business. The snow and ice won't have a chance to stop you.

Yes, yes. The puns are terrible, so be glad I couldn't think of any more.

You might get a charge out of this

Zelie had her ETV procedure yesterday and it went perfect.

She's doing so good that she'll be discharged TOMORROW!

What's in a name?

So I know several people want to know more about Zelie's name. So here it goes.

What does it mean?

It is a variation of French for 'solemn'.

Why did we pick it?

That is a loaded question, so I'll just say we are really fascinated by this particular Saint. Marie-Azelie Guerin Martin is a fascinating individual, who was very influential in the lives of her daughters who all became nuns (some became Saints). She originally wanted to become a nun herself, but was turned away due to medical reasons. Zelie became a lacemaker and prayed to God for children so that they could be consecrated to Him.Wow. I mean, just wow. We can't help but marvel at the impact of her life and devotion.

Not a Private Room

I see that Daddy has been keeping everyone up to date on the medical front.  There really isn't any more to tell in that regard.  We are still waiting for Tuesday and surgery and hopeful that those things will bring our hospital stay to an end.  More on that as we know it.

In the meantime, there is something else I wanted to share.  The floor of the hospital on which we are staying is in the throes of moving.  Soon they will be in a shiny new wing, every room will be private and there will be proper beds for moms or dads, rather than the current cots of chain link fencing.  God willing, we will not be there to see it.

As it is now, most of the rooms are shared.  And, when the room is not private, neither are the worries and stories of the folks inside.  That has been a little hard.  Not because we worry what others may think or know about us, but because we begin to know them and to feel the weight of their struggles added to our own as they crowd into the corners and pathways of the one small room we both occupy.

In this Advent, this season of waiting, we have been waiting in a way that has before now has been unknown to us.  Before now the season of Advent has been one of reflection of preparation by meditation and self chosen penance.  This year there has been only the hard, numbing slog of actual, physical waiting.  A waiting that often closes the door on meditation and such like, insisting on its own course. In that, the waiting, we have found ourselves waiting, not alone, but with every other family that has shared the room.  There have been several.

Their stories are not mine to share, but as you prepare hearts and homes for Christmas this year I hope you will share some of the generosity that you have showered on us with those whose burdens have become mingled with our own.  The Louds, and the Twins, little Madison and Jacob and Mr. Scissors.  Some of them, most of them, have gone home now, though I doubt they are fully recovered.  Some remain on the floor.   When you stop to think of us, to pray for us, please spare a thought or word for them and pray that we will be able to shine some of the light of your love on those around us.

Holy Lasers, Batman!

Lasers indeed. Zelie is part of a little study that is using light to measure blood oxygen levels in her head similar to the one on her foot, but as part of a bigger study to see if they can correlate that to other aspects of health. We won't get any results, but are simply allowing them to take measurements. It's a harmless process, but I'm excited to see that they're working on ways to provide non-invasive measurements using optics.

Orthopedics came by and evaluated Zelie; they were happy with her and said she wouldn't need to see them again.

J went to the aquarium today for a fun little outing. Everyone else is doing great and getting ready for the snow.

So that's how you pronounce Norfolk

The GPS has a funny way of putting things. It would have been more interesting if it were Norfolking way instead of Norfolk street. I think Louis Pasteur rolls over in his grave when the GPS says Lewis Pastor Avenue. Clear skies and sunny for a few days, but that's just because it is too cold to support cloud cover. All is well in the general day to day of Boston. Interesting points to note are random 3-point turns, statues of pears and fishes randomly placed, jumbo-jets flying above, and discovering all of the different styles of the north face jackets available (and our lack of that marks us as outsiders). Little miss Z is doing great. Position restrictions are removed. Urology has totally signed off to leave her alone for 6 months. Ultrasound today went fine -- Neurology is reviewing it now. Ever try getting ultrasound goop out of so much hair? Nevermind, don't answer. Head circumference is up slightly -- still looking at surgery Tuesday. I stayed overnight with her here last night and it was not too eventful -- she only wakes up like 3 times and the nurses were at her side before I could get up. Also, when I returned for the night, I had to once again pry the baby away from the nurse's station. She's Queen Zelie to them. Mrs. K is recovering nicely. Not too much to say here other than she is being a good girl and following her Doc's orders.

So, um, where's our baby?

Don't let the title scare you. She is in hand and doing well.

Mrs. K and I got here she was not in the room and blue portable phone that nurses carry was on the bed. A quick call determined that her nurse had her and was just holding her. The conversation went like this:

N: How can I help you? D: Just needed to see the nurse. N: What for? S: We're looking for our baby and we have milk that needs to go in the fridge. N: Oh. We've got her up here. We'll be right down.

Ms. Z has charmed the staff and is getting some extra attention and care... her lungs work in her favor -- she's a little opera singer.

Zelie popped a few stitches and that is being seen to right now. Neurology is taking care of it and said this normally happens right about now... another reason that they keep us here. Position restrictions to tummy and side laying are back on for now.

Everyone else is doing well.

A Euro Dynamics Study?

No. No.  Urodynamics.  Uro not Euro.  Amazing what a difference an E makes!

We are in our second day on the Neuro floor.  It's nice to be where there are enough chairs and away from so many singing, dinging monitors and flashing lights.  It has also been more than wonderful to be able to scoop up Zelie the minute we arrive and hold her and care for her ourselves.  It's also more of the same "wait and see" while on that crazy time they employ in the hospital where a 3:00 appointment happens at 9:00 and all times flex at least 30 minutes in any direction.

Presently, Miss Zelie is upstairs for that urodynamic study.  This will give us a accurate picture of how her bladder is working, or not working. As I've mentioned before, after the initial surgeries, bladder and kidney health are the most serious concerns accompanying her condition.  So far, the testing performed suggests that her bladder is doing well.  However, this new test will give a much more robust and definitive picture.

PT has also been by today.  They were pleased with her overall range of motion and lower body strength. We've been given stretches to work on with her to try to ensure even development across her lower body and to prevent problems with her joints as she grows.

Later this evening she will get to play in the MRI  machine.  While there has been only minimal increase in her head circumference, there seems to be some increase in the pressure in her head.  This is not a surprise, and our surgeon wants to stay on top of any developments.  Obviously there will be more to come on that front.

Several of you have asked about Joseph.  He's doing well.  The weekend was a little rough. What with Nana leaving and moving everything, it was a bit much for one little man to take.  But we are moved now and he is happy in the new apartment.  Uncle Ryan arrived today, so there are many adventures ahead.  And, now that mama is back with him and Daddy each evening, things are greatly improved.

That's all the news for today so far.  Thank you for all your continued love an support.  We would never have made it this far otherwise.

So long, popcorn button

Good news, Zelie is stable and out of the NICU.

Now you may be asking what is this popcorn button. Are we talking about microwaves here? No, no, no. Papa K mistook the baby symbol on the NICU doo-hickey to be a popcorn symbol.

Me: "Hey, what does the popcorn button do?"
Nurse: "Popcorn button?"
Me: (Points to button)

Nurse: "Oh, that's a new one. That is the infant button for the incubator heater"
Me: "Oh... so it doesn't make popcorn?"

Now Zelie gets a little more peace and quiet.

She has been doing great and has quite the little personality (read: temper). She got to nurse for the first time today and was a real pro. We got to hold her for the first time today as well.

Ultrasound tomorrow.

Happy Thursday!

Happy Thursday Everybody!

We are all doing very well today.

Zelie Update: Zelie is eating great! No more NG tube. Dressing on her back was changed this morning and the drain is still in place for probably 1 more day. Renal ultrasound will happen this morning.

Mom Update: Ha! Almost discharged today, but we regrouped with the medical staff and she will be discharged Friday.

Dad Update: I got Zelie added to the insurance and seem to have everything in order. I'm just waiting to be blindsided by something I forgot. Hopefully, I will do some driving today to go see where our new apartment is exactly and to work on the driving routes between there and the Children's Hospital.

Oh! Hey look, we have clouds again! Must mean the angels are here in full force ;)

Hey look! No clouds today!

Gosh, I'm not even sure where to begin!  Parts of my mind (and my body) are still reeling from "10lbs 1 oz"!!

Sweet Zelie continues to be a star.  Neurosurgery is due by this morning to remove the drain from her back and re-dress her wound.  Her only remaining goal for getting out of the NICU then will be eating enough to wean from the IV.  The nurses are all over that! They are feeding her as much by mouth as she will take but also, after some consulting last night, temporarily adding a NG tube to be sure we can get her sufficiently stabilized with milk.  Eating is hard work for a baby who is barely two days old and already recovering from major surgery!!  Once she's off the IV she should be able to leave the NICU, though not the hospital.  They'll move her to her own room on the Neuro floor and we will, at that point, be able to hold her semi-normally, help her get the hang of nursing so that we can get rid of the NG, and continue observing her for signs of hydro.

Of course, if the hydro presents itself, and it is certainly more likely than not that it will, then she will have more surgery and we will be back in the NICU for a few days more.  You know how this goes, rinse and repeat as necessary...

Before our gal is discharged there will also be other tests (primarily with urology) and specialty consults (think orthopedics) so that we have as full a picture as we can have this early of what is to come.  That, in turn, will help us set up our next steps for her care over the first six months or so.

Even with all of that in play, we have a reasonable hope that we will be able to carry out the front door in our arms in about 10 days or so.  We shall see.

Even as I type that, and very much look forward to that, I want to take a minute to say how ubeliveably fantastic the staff, particularly the nurses, in both hospitals have been.  I hope you never, ever, need such specialized care.  But man!  If  you do, this is a phenomenal place!!!

To those of you who have asked, I'm doing very well.  They are taking excellent care of me also.  I've had my own share of fantastic nurses and am healing quckly.  Not all the way there, but certainly on my way.

That is about the size of it.  Lots and lots of  you have asked for photos. I'll post one or two as we go along, but please understand that this mama is a little paranoid about posting photos of her babies faces  on the World Wide Web, where just anyone could see them and use them for any purpose they choose.  I'm a bit old fashioned in that regard, I know.  I know it and am content to be so.  If you  really need more, and have my email, email me.  I'm happy to share with the folks who we know and love, just not every stranger with an internet connection.

For now, have a peek a storytime with daddy.

Thanks for all the clouds

Everyone else have overcast dreary weather? It is very cloudy here and has been for days.

Everyone is doing fine today.  We are getting ready to go see Zelie in the NICU.

Momma is doing well.  Recovering quickly, but not pushing it.

Zelie's back closure surgery went well.  Neurosurgery said that no major nerve roots were in the exposed area. They were able to remove the breathing tube right after surgery and she is already kicking and squirming.  This is one strong baby.  She can pick her head up.  She is quite the charmer too -- nurses are already fighting over caring for her. Keep in mind that the NICU is full of tiny babies, so Ms. Zelie is something of a novelty for the staff there.

This week is monitoring and consults with other specialists for other aspects of her health.

-David

That my friends is what they call a lunker!

10 lbs 1 oz.

Dang that is a lot of baby.

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!

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.

First comes love. Then comes Marriage. Or - How it all started

If you're here, you probably already know most of this but I wanted to summarize where we've been thus far, if only for myself and to give us a place to start.

In late spring, D and I realized we were expecting again.  We were a little giddy about it, to be honest, because, well baby.  And also, we weren't sure such a blessing was possible after J.   An early sonogram to date the pregnancy gave us a due date of December 9.  While I'm skeptical about this date being achievable since my kiddos all tend to be early, it is also my father's birthday and the day after Our Lady's feast.  This, to my mind, seems an extra blessing.

In mid-July I have some trouble with my left leg.  To rule out something serious like a blood clot, on the advice of our midwife, we pay a visit to the ER.  The leg is fine, definitely not a clot.  More, the sonographer who imaged my leg offers us a very unofficial gender peek at our baby.  Girl!!  Her daddy's face shines with the news. For two days we relish this secretly while we wait for the official sonogram to verify.

The following Monday, at 19 weeks, we visit the doctor's office for the official "anomaly scan".  Definitely a girl but also, we're told, some unknown thing is wrong with our little Zelie's brain.  A bizarre visit from start to finish, a doctor we've never met tells us repeatedly he doesn't know anything about anything about what this means but it seems serious, and maybe even fatal.  We're told we'll be given a referral to a perinatology practice in town.  They are wonderful, so everyone says.  They will know what to do.

Our referral appointment is two weeks away.  We wait.  I read everything I can find about possible brain anomalies detectable in utero.  Its fascinating and sad and otherworldly all at the same time.  When I wonder out loud just what it is His Majesty has in store for us, my spectacular husband says simply "Whatever is best for us."  He will forever be my hero for that.

The two weeks pass. We present ourselves for our appointment at the new doctors' office. Everyone was right.  They are quite marvelous and they do understand what is happening.  They deliver Zelie's diagnosis, Spina Bifida, factually, without drama or dire predictions.  They assure us this is actually common and offer us lots of options to consider, again factually, respectfully and without prejudice.  For myself, when I hear the actual diagnosis my first thought was "That's it? But that's easy!".   Of course it isn't easy, but compared to many of the other possibilities out there, to the dire predictions at our previous visit, it seemed like an absolute gift.

From that point to this, not much has changed.  Her defect is low on her spine which is very promising.  She moves lots including lower legs and feet.  That also is very promising.  The build up of fluid on her brain, common in this condition, is quite mild.   She continues to grow at very normal pace and gives every indication of being otherwise totally healthy.  Tests for other abnormalities have all been negative.

The spectrum of possibilities for her ability/disability is broad.  None of it is knowable from here.  All there is for us now is to wait.  When she is here, we will see.  There will be surgeries and tests and it will take more than a trip or two to the doctor to understand what will be possible for her as she grows.  Our hope for her is a quick recovery from her back closure, the possibility of being shunt free eventually and only moderate bladder and bowel issues.  For those who are curious, her mobility doesn't bother us.  Whether she is able to ambulate naturally or requires some fancy gear, we know she will be able to get wherever she needs or wants to go.  And hey, don't forget, dad is an engineer.  The idea of "gear" is not without it's charm in this house!

We've visited other specialists that will be involved, neonatology and neurosurgery in particular.  Our pediatrician is aware and has worked with many other such children.  We've toured the NICU at the hospital and started making lists.  My doctor has agreed to allow Zelie to be born naturally, barring some emergency situation.  That, frankly, is a miracle.  Its something he admits never having done, but something he seems comfortable supporting.  We are deeply grateful for his care, his willingness to listen, his frank and generous manner.

As I write this we are 29 weeks along.  We will be back in the doctor's office on the 15th and every week thereafter until our sweet Zelie is born.  There will be sonograms every week, which is always a little exciting.  I'll post updates here as I have them, but no word just means things are going along as they should.  Its nice to finally be at a point where the medical is, for the time being, stable and we can simply focus on the delight of soon welcoming a new spark of love into the world.

Stay tuned...