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.