The results are in...sort of.

CeCe had a good night after the sedation from last night's MRI wore off. They decided not to repeat her head ultrasound afterall as the MRI is a better diagnostic test...so that explains why the "no call no show" event yesterday.

The orthopedist came by early this morning an evaluted her for things like scoliosis (sp?) and some other things I can't pronounce. She passed all his tests and he mentioned that she has symmetry with both her hips and looks to him to have an L5 functional level, rather then the S1-S2 level the neurosurgeon suggested...what does all that mean? Nothing really...she is who she is and no matter what level they place on her...I'm not going to let her become a self-fulfilling prophecy. She will do and be what she was meant to do and be...their comments are merely textbook projections and suggestions...not fact.

On a side note, the MOMS study team asked me to meet with a candidate they had here in Philly who had just found out (like we did ) at their 20 week ultrasound that their baby has SB. OF COURSE they can come talk to me! It made SUCH a huge difference to me to actully see a baby and meet her family back in August when we were trying to make our decision. In case I haven't mentioned (and I know I have) this was absolutely the right choice for us. Through all the frustrations and communications, we know CeCe is with the best! Just ask them...they'll tell you! :)

Then FINALLY I got to meet with the neo-natalogist for the MRI results...and Ta-Da...most everything she mentioned we already knew from all the in vitro ultrasounds. Here's the low-down:

Her ventricles are still enlarged.

She still has a Chiari Malformation (Cerebellum is being pulled down...very typical with SB kids).

She has what's called a Syrinx-a small pool of Cerebral Spinal Fluid INSIDE her spinal cord.

I learned that even though her head circumference is expanding, that's not neccessarily a bad thing...think about how she would look as an adult with a tiny little peanut head! We just have to watch HOW FAST it's growing...she's doing just fine although she has a little more fluid in her fontanelle now.

So your next questions has to be...what does all this mean? How will this effect her in the future? The answer: NO ONE KNOWS....SB is a tricky liitle business....just because she has this or that...a level described as here or there...everything is just a wait and see. I beleive God has finally found a way to teach me patience...interesting concept, but He's got it all under control.

The waiting game

So much was meant to happen today...some of it did and some of it didn't. Caroline is on the mend and feeling much better today. There was a group of volunteers that came in to play with the kids today and she had a good time with her playmate.

On to CeCe...the ultrasound folks NEVER SHOWED UP. That's right...no call no show. We will check up on that as soon as we can.

The PT showed up but we weren't able to see her at the time.

The neurosurgeon showed up and left without much comment.

The social worker showed up and chatted with us for awhile...just stuff in general.

On to to MRI...we knew when she would have this today, when we found out...today. The neurosurgeon mentioned it was at 5:00pm...then we found out it would last 2 hours...then we found out she couldn't eat after 2:00pm....then at 5:00om, they hadn't called for her yet and she was HUNGRY...then when they came and got us at 6:00pm they said she would have to wait for a MRI table to be open, probably around 7:00pm. I about lost it at this point. So, CeCe was of course a trooper and was soothed with some cuddling and a binky. They also told us that she had to be sedated for it and I was not real happy about this either...we just got her awake from the surgery and they said the effects of this may last for 24 hours....geez.

And so, we wait...she's in there now and should be done between 8:30-9:00pm...we won't have any results until tomorrow and I have a sleeping room again tonight so I can be here...I think it makes up both feel better.

I'll let you know any results we get as soon as I can.

Carbon Copy

So, today has pretty much been a carbon copy of yesterday. The hospital is quieter over the weekend which is kind of nice, but also kind of depressing. Right now I am one of 4 people in a mammoth cafeteria.

Cece had an ok night...I was super glad to be able to be here with her. Her sugars remain low since she's not eating enough and she's still on the cannula.

The docs came by and did rounds this morning...it was a much smaller group than the ones during the week...just 1 NICU doc and 2 nurses. They reiterated their orders from yesterday and put her back on a bladder scan...this thing that checks to see if she has anything left in her bladder just hanging around. It looks pretty extraneous to me. When they scan her it goes from 0ml to 37ml...not too exact. So, they had to cath her again but she was good and empty!

The still have to schedule her head and spine MRI...the other two test are tomorrow and wednesday...but I think I've already said that.

I'm waiting to hear if I have a sleep room again tonight...won't know until 5:00pm...probably would be really good if I did get one since Caroline was up all night vomiting and out of whack all day today. Poor thing...I blame hospital food...it's an easy and unassuming culprit. I don't want to either cathc what she has or let it hitchhike into the NICU with me.

What day is it anyway..this place is like Vegas...you never know if it's day or night and there's always bells and whistles going off. Push come to shove, I'd rather be in Vegas.

Night in the NICU

Well, CeCe is still doing well but she can't seem to stay off the cannula. In the evening, she needs a little extra help and a little extra oxygen...so back on she goes.

Her blood sugar has also dropped lower than they'd like it, so she is back on a titrated IV (i.e. they give her whatever extra fluid she needs if she doesn't eat enough on her own). It's kind of a Catch-22...she wants to sleep all the time because she isn't eating enough, and she doesn't eat enough because she's sleeping all the time.

They are going to re-evaluate this every four hours and I am here at the hospital tonight in a sleeping room if they need (bedside right now, and of course, she's just a snoozin').

By the way, head ultrasound got moved to Monday...

Sorry for the delay...

We are doing just fine. Cece was back on the cannula yesterday but they took her back off today thinking she can do it all on her own. Neurosurgery came back to check on here yesterday and again today...she has quite a bit of bruising around the incision but that is to be expected. She has shown no signs of CSF (cerebral spinal fluid) leaking...which is awesome...but something we need to keep an eye on until the incision heals.

The physical therapist came back and put her through the paces. She passed every muscle test excpet for being able to push back/away with her gluteal muscle and pointing her toe. She may be able to do that still as she was only 2 days post surgery at the time. The PT will be back on Monday.

They took her off her supplemental nutrition today too...she's on milk now entirely...that is great news because the nutrition needles are REALLY hard on her veins and caused them to have to keep finding new places to stick her. She's pretty bruised up from all that too.

I was discharged yesterday and we are now at the RMH for the duration. The rooms are small and cramped but the place has very nice facilities and a shuttle van to and from the hospital several times a day.

They have scheduled another head ultrasound to look at her ventricles on Monday (was going to be on Sunday) and we should get the results the same day. Her fontanelle is still soft and sunken...just how we want it.

I guess that's about it. Brian and Caroline and I are off to visit again. I am planning on staying here at the hospital tonight in a sleeping room if I get one available...we won't know until 5:00pm...but I'd like to be here with her if I can...it's too hard leaving here at night. I'll update later if I can!

Thankful in Philadelphia...

What a day today....Cece had a great night in the NICU...vitals were stong but she is still on the CPAP. The docs came by and said they wanted to wean her off it today so they dialed it down. Also, she FINALLY woke up from her surgery today...it was so awesome to be able to look at her baby blues...when I was holding her, she just kept looking around...not knowing what to do with all the new sights...those beyond her warmer bed, that is.

We also woke up to SNOW...how cool is that on Thanksgiving...just flurries really...but awesome! When I came back from my visit, the nurses were putting up the Christmas tree...and Caroline got to help. She was putting on decorations and helping to make thanksgiving treats that one of the nurses had brought in..they also had the parade on...if it wasn't for all the monitors with bells and whistles, it would have been just like home! There are only three patients on the SDU "Special Delivery Unit" right now and there were three nurses here today...talk about personal treatment. Along with the nurses and one of the other families, we ordered turkey and stuffing plates from Cracker Barrel...not too shabby!

I went back to see CeCe at 3:00pm and to my surprise...she was off the CPAP and had been since 1:00pm and was totally breathing on her own...what a rock star! Her nurse commented how well she's doing. Even with just having had surgery yesterday, she is moving and wiggling everything right down to her toes! It's amazing to see. Her head circumference has also improved which is a great sign for her in the "to shunt or not to shunt" discussion. Also, Brian finally got to hold and feed her today! They warned us they she may not eat very much at first, but she sucked it right down and promptly feel asleep.

We were able to move to the Ronald McDonald House (or Old McDonald's House as Caroline calls it)today too. That was an answered prayer. Brian says it great and I'll get to see it tomorrow.

We have so much to be thankful for this holiday. Thank you for all of your prayers and well wishes...we are doing great and continuously marvel at the power of prayer and our God...we know He and your steadfastness to CeCe's cause has made this happen....we can not be thankful enough.

Surgery update

CeCe is doing fairly well. She's still having some trouble breathing all by herself, but not too bad. She's hooked up to a CPAP machine...like for folks with sleep apnea. She still hasn't woken up from the anesthesia but they keep telling me that's normal for a newborn who is still trying to metabolize the meds. She has LOTS of wires and pumps and alarms and buzzers hooked up to her...which is scary, but it's mostly monitoring.

I got to hold her tonight...sideways and all bundled up...that was awesome.