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.