Tuesday, November 30, 2010

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.

Monday, November 29, 2010

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.

Sunday, November 28, 2010

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.

Saturday, November 27, 2010

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!

Thursday, November 25, 2010

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.

Wednesday, November 24, 2010

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.

Out of Surgery and back in NICU...PRAISE GOD!

CeCe is out of surgery and doing ok. The neurosurgeon called us and said that she did very well and that it was an easy close. She had enough of her own skin and didn't need a patch. He said it is also a smaller lesion. For now they will keep an eye on her fontanelles and watch for signs of increased hydro. He also said that her mobility is great...she is operating at an S1-S2 lesion level...she has great muscle tone too.

When they got her back to the NICU they noticed her breathing was shallow and periodic...so they had to call in the respirtory docs and hook her up to a nasal cannula to force warm, moist air into her nasal passages and "remind" her to breathe.

In my opinion...she looks great...pink and squishy...just hooked up to a bunch of machines.

And most sincerely...thank you for all of the prayers....they've been answered 10-fold. She is a spunky, fiesty, and beautiful little girl (with HUGE feet!) and we prasie God for her and thank all of you for your love and commitment to our cause over the last several months. God is good!

Quick update...

CeCe went to surgery this morning at about 6:45am...she had a good night and ate a little bit until 9:00pm last night. We met with a fury of docs and nurses before they wheeled her back....

They went over the procedure with us 1 more time and she went down the hall with them sucking LOUDLY on her binky.

She SHOULD be out about 9:30...and may or may not have a breathing tube. That's about all we know for now. We are to meet the neuro doc in the NICU at 9:30...I'll update as soon as I can agter that.

Thank you for all your prayers, texts and emails.

Tuesday, November 23, 2010

Surgery postponed...

Not a great day...but Cece is a fiesty little trooper! We've had a rough day getting information from ANYONE...very frustrating. I cracked it. At 11:25am I called the NICU to see if her surgery was on track for 1:00pm....the nurse says..."she's going in 30 minutes and if you aren't here, we go without you". Brian rushed down to be with her since I still had follow-ups with my surgery docs. Why didn't anyone call us? I still don't know.

We both were there by 11:50am and they let us know that someone had ordered a coagulation test they don't normally run and it came back that her blood wasn't clotting...in actuality, it coagulated in the test tube before they could get it to the lab. They ran the same test two more times and got the same result...typical for newborns. Their conclusion?...because they couldn't get it to coagulate in the lab (because it already had in the tube!) her blood wasn't coagulating! That makes no sense! The neurosurgeon said he wanted to go ahead with the closure but the anestesiologist said no.

So, we wait until tomorrow and her back stays open another day...they say as long as they close within 48 hours the infection risk is minimal....I hate that she's not been closed yet. She is the first surgery tomorrow at 7:00am. Brian and I are both very frustrated and there's nothing we can do. Please continue to pray for her for no infections and a successful surgery tomorrow.

On a bright note...when the neuro resident came into talk to us...AFTER I cracked it...he said she has really good spontaneous movement and a small lesion...both great things.

Monday, November 22, 2010

Surgery Update....

CeCe is considered an add-on for tomorrow's schedule...so she will be going between noon and 1:00pm.

Cecilia Hope Huskey (CeCe)

We decided...finally! Not too much new to report. Her surgery tomorrow will either be at 6:30am or Noon....we should know later tonight.

She seems to be doing well...still on oxygen and looks plump and pink....she squinted her eyes at us for a split second and then went back to sleep. She will probably lose a more than average amount of weight since she hasn't been allowed to eat yet....but she'll be just fine.

Thank you sooooo much for all the emails, texts and posts.

Love to all!

Baby Delphia has arrived!

...And before you ask, no, we have not named her yet.

C-section was fine...no complications. Baby girl was born at 10:31am and was 7lbs and 11oz and 19ish inches long (they didn't want to stretch her out to measure exactly). She arrived hollaring but quieted down and they had to put her on oxygen. I got to see her for about 2 munutes and hold her hand before they whisked her to the NICU for safe keeping. Brian went with her too. No club feet either! YEAH! She is super pink and squishy-looking!

Caroline already loves her and got to visit her before I did! The video is sweet.

I'll posted more later today about her surgery etc.

Friday, November 19, 2010

Monday is THE day....

After a few questions and several consults, the docs and nurses have decided that Monday will be delivery day. Thank goodness....that "let's wait and see on Monday" thing-o was NOT working for me.

So we will head to the hospital at 6:00am on Monday morning and the c-section will be at 9:00am...doesn't take too long, if I remember correctly. This also means her closure surgery will be on Tuesday morning...this makes me happy too to not have to wait 48 hours.

Until then...(or sooner if we do something fun this weekend!)

Thursday, November 18, 2010

Shuttle launch...delayed?

Um, yeah. So I went for the "lung development" amnio today...by the way, not my favorite thing. Once they got the ENORMOUS needle in my belly, Baby Girl decided to wriggle around thereby forcing the doc to wriggle the needle around...THAT felt good. It actually reminded me a scene from Pulp Fiction to be precise.

Anyway...they ran the "fast" test results and just called me back to say....drumroll please..."the test results are borderline". Translation? We are still a maybe, possible, perhaps 'GO' for Monday but the complete results won't come back until over the weekend (when the MOMS nurse is off) but she assured me that she will pass the word to the on-call mid-wife who will try, maybe, perhaps, if she can...pass the full results on to me. If they don't get back to me, then we go in on Monday and see what they say then.

Ummmm, ok.

Sooooooo, whatever. We wait. Baby Girl sure does want to make an entrance, huh?

On a bright note...they did say her "extremities have great movement"...and she weighs approx. 6.94lbs! Now, that's something I want to hear!

As always...thank you for your prayers and we'll keep you posted!

Tuesday, November 16, 2010

Observations on Philly...

Random things we've noted since arrival...

1. All the gas stations here are full-service...interesting...haven't seen this for 20 or so years. What's the protocol here, peeps? To tip or not to tip?

2. The national epidemic for obesity is lost on NJ...there's a Dunkin Donuts about every 3rd block (much like Starbucks in Seattle).

3. The City of Philly really is the City of Brotherly Love...the lady at the Museum today asked why I was in a wheelchair. I told her the basics and she comped us parking, a carousel ride, and 6 tickets to return. She also asked if she could pray for us!

4. Traffic patterns here MAKE NO SENSE...
a. Exits are often to the left.
b. Once you are on a main street, you can't turn right OR left at stoplights. You have to veer off a ramp (that can be either before or after a light) and then use go thru THAT intersection on the cross-street....huh? Brian and I have decided that someone made an excessive amount of "No Turn" signs and needed to unload them somehow.
c. They have some streetcars but the driving lanes are on the same roads IN THE SAME LANE....who gets the right of way there? My guess is, well, I'll have to let you know that one. We've a got a rental and it's a NO FAULT state...I'll keep you posted.

Let's see what else I can up with...

Monday, November 15, 2010

Philly update #2....

Today was a good day at the hosptial/doctor. No ultrasound today, which is ok by me. The rest of the pre-natal stuff is all good. And, I got to meet one of the OB surgreons...although, probably not the one doing the cutting next week. He said "Hey, I know you! We've talked about you in our meetings...you're the funny one!" That, I must say, made my day. He also noted that I didn't have much to talk with him about. I've been through a c-section before so I really already know that it pretty much stinks and why it stinks.

Caroline was a trooper at the hosptial...as was Brian for that matter. We took our laptop with us and she watched Veggie Tales most of the time and let all the folks talk to us that needed to talk to us, without interruption....a HUGE accomplishment if you know our little "chatty Cathy".

We were able visit the Aquarium last week in not-so-beautiful Camden, NJ as well as the Philly zoo and mall. Brian has had to start pushing me around in a wheelchair, but it's worth it (at least to me!) since we are not confined to the room AND, more importantly, it staves off the contractions. We are planning to head to the Please Touch Children's Museum tomorrow.

My amnio is still planned for Thursday at 9:00am and then I have to go back on Friday for pre-op stuff and bloodwork. If the amnio comes back Thursday evening and says Baby Girl's lungs are mature...she will be delivered on Monday, 11/22....just one week from today! If they aren't yet ready to go, she'll be delivered Wednesday, 11/24. Her closure surgery will then either be the 23rd or 26th.

There is another MOMS patient here right now that had the pre-natal surgery last month and she has asked to meet us, so we will say hello to her on Thursday when we head back to the hospital. I believe this is her first baby...I can't imagine dealing with this not knowing what a "normal" pregnancy is actually like. My prayers to her and her family. I was able to meet another participant when we were here for our evalation in August and it was such a great experience to be able to meet another family who had gone through what we are about to.

The study folks have also decided to let us go ahead and stay here in the hotel for the duration of the week rather then moving us to the Camden Ronald McDonald House. I think that's best for all of us. We have a nice hotel, near lots of stuff and have gotten into a nice routine. HOPEFULLY, next Monday, we will be able to move to the Philadelphia Ronald McDonald House just 6 blocks from CHOP when the baby arrives...fingers crossed!

Just as a side note, somewhere along the way Caroline has started calling her new sister "Baby-Delphia". I have no idea where that comes from as she understands that we are IN Philadelphia but insists that is her sister's name.

As always....thanks to all of you for your thoughts, prayers, and support. We know we couldn't have gone though this without family, friends, and most of all, God...

Till next time...

Monday, November 8, 2010

Philly Update #1

Here, safe and sound. We went to CHOP today for my first appt. and it was ok. Everything has continued to progress...club feet (yep, back in the picture again), and the hydrocepheleus (sp?) had progressed as well...they say this is all to be expected. Contractions have lessened since we got here, but they kept telling me they are glad I'm here to keep an eye on me.

C-section etc. is still on the books for Nov. 22 as long as the amnio on Nov 18 says her lungs are ready to go...if not, c-section will be on 11/24 and her surgery will be on 11/26. They ran thru the what to expect stuff with me and I also met with a mid-wife and the anesthesiologist....nothing really new there.

On a side note...I got my cheesesteak! So, I can mark that off my list. I don't head back to CHOP until Monday and then again on Wednesday...so I've got some hours to fill until then.

BTW, not that I reccommend you going to the hospital, but this place is amazing. Their level of care far exceeds anything I've ever experienced...the peri-natalogist, whom I affectionately refer to as Batman (he looks and sounds like Adam West!) happened to walk thru the waiting room and stopped to chat with my sister and me as if we were old friends. They always make sure you are comfortable and that they realize that although THEY do this everyday, you don't...I feel very "looked-after"....a huge change from Dr. Clown.

Thanks to all of you for making me feel "looked-after" as well. Greedily, I ask you to keep the prayers coming!

Wednesday, November 3, 2010

And it all falls into place

All the details have been changed and the arrangements made. I will fly to Philly on Sunday and will meet my sister there (Thanks, Gretel!). Brian and Caroline will meet me there on Wednesday and the waiting game will begin for the arrival of Baby Sister.

Thanks to everyone for all your thoughts and prayers...and to Tiffany for bringing us dinner tonight! Oh yeah, and today is Brian and my anniversary--4 years, people! I think this will be one to remember...almost as chaotic as our wedding day, actually.

I'm feeling much better today with all the decisions and plans having worked out....praise God! And have only had 2 contractions...praise God, again!

Once again, I'll keep y'all posted!

Tuesday, November 2, 2010

And away we go...

Just got off the phone with my doc in Charlotte and the study coordinator in Philly...looks like we are headed up earlier than expected....either Sunday or Monday of this week! We have alot to do before then and so much to get straight.

All the docs (here and at CHOP) are going to discuss tomorrow am and we'll get the new plan together. I'll post an update tomorrow when we know for sure.

Testing Positive and ready for my cheesesteak...

Why is it that testing positive for something is usually something negative and vice versa? That seems weird to me....anyway....had my visit with Dr. Clown today and had another Fetal Fibro Nectin test...with a positive result this time. Here's what the doctor sa id..."A negative result means you are 99% not going to go into labor within the next 2 weeks...a positive reults mean, you may or may not go into labor for several weeks"...nice.

What do I do with that? I've called the Philly people and we are waiting to hear back from them to help us decide what to do....go early? Or wait it out...

More later...