Little Miss Thang is hangin' in there!

We have been able to keep down her pain meds with very little vomitting since yesterday afternoon.  She is responding well to the antibiotic, and as long as she keeps us her fluids, we will probably avoid another hospital visit.  Thank God!  I just hope she starts to feel better physically soon.  She's very sore still.

We appreciate all of you being so kind to us by keeping us in your prayers.  All of the Facebook notes, texts, e-mails, gift cards, meals, and generosity have gotten us through this week.  I'm so thankful for all of you in our Lovejoy family, Prestonwood Church family, and close friends and family in this community.  Wow sums it up completely.

Tonight's our last production of Music Man and I've been so impressed by our kids and musical directors this week!!  Good luck to everyone tonight!

I think the Gralls are going to sleep in tomorrow and enjoy a quiet Sunday at home.  We are hoping to see a few visitors tomorrow, and then we hope to have a regular week of work and school starting on Monday!  We shall see...enjoy the rest of your weekend.

WeekEND?

I know this week could probably get a lot worse, I just don't see how at this point.  Zoe's not doing as well as she could.  She's in decent spirits considering she didn't sleep much at all last night (neither did I as a result), but not she is not responding well to the surgery.  Typical with Chiari surgery, she is vomiting quite a bit and not keeping her pain meds down.  But of course when they send you home with discharge papers that say, "call or visit the ER immediately if she starts vomiting," you begin to flip out somewhat.

Turns out, she's also battling a pretty severe UTI which could also be causing the vomiting.  This specific type of culture has ONE type of antibiotic available for treatment or else she has to go back to the hospital for a couple more days to get the antibiotics administered through IV.  (Poor baby!!!) We are going to start with the at-home version (comes with a few risks but the doctors are OK with starting there) so we are now waiting to get a prescription filled to start treating that.  There's also a chance if she continues the vomiting, she will have to go back to the hospital for fluids anyway.  We will also be starting some medication to decrease the nausea.  Bless her heart.

We are not over this hump yet, but the end is in sight hopefully.  She is napping now...sleep is so good for all of us.

So I thought about going ahead and renewing my driver's license today since I totally didn't get around to it in time to renew online, but I figured a trip to the DMV's hour-long line at a minimum was just something I would avoid...I would hate to have to hurt someone today.   I'll go ahead and risk getting that ticket, only to save someone's life.

It just seems there are too many obstacles this week.  At least we have Disney.  Zoe has never been into movies (hello, she's not even 2 yet), but they seem to keep her still and calm and entertained.  We've already "watched" Toy Story 3, Shrek, and Finding Nemo - "watched" meaning we color and play and build legos all while "watching."  She is being such a trooper, but I am definitely ready to have our little girl back to normal.  Stay tuned!

Home now!

Happy Thursday!!

Zoe is home and resting peacefully in her own bed.  What a difference 48 hours makes!  Thank God she is home.  We had a nice set-up in the hospital (she had a HUGE room), but nothing compares to your own bed, no matter how old you are.  When I went to lay her down, I spied on her in the monitor and she just looked around and got reacquainted with her room and her bed.  I gave her a little extra Tylenol to get her through her nap because she will most likely sleep right through her Motrin dosage...hoping to taper the pain meds soon.  She is still very stiff in her neck and fusses when she anticipates being moved around, but other than that she's doing great!  We gave her a real bath right before we left the hospital (she HATED that process!!), so she's gonna feel great when she wakes up.

God has answered so many prayers this week.  We are forever grateful for you who have joined with us.  He heard every single prayer and that should encourage all of us.  Nothing is too difficult for Him.  We are hoping to see improvement in her chewing and swallowing and sleep apnea immediately, now that we are home and focused on recovery (not just surviving the next dr.'s visit or vitals check or round of medicine).  

Ya know, Jesus went through more suffering than any of us when He was on the cross, and He overcame it all.  It didn't happen instantly either.  He had to fight too - through prayer (praise and worship).  I kept reminding Zoe of that, and each time I did she would start to calm down.  It doesn't matter how old you are or what you're battling or what time it is or how little sleep you've had - God meets you right where you are and He responds to faith, no matter how much or little you got.  Let's all continue to seek Him in all areas of our lives.  

Now that she's home and recovering, I need to get to party-planning!  Someone turns 2 in a couple of weeks and has lots of friends and family coming to town to celebrate.  If anyone has an Elmo costume Daddy can borrow, let us know.  I have a feeling there will be lots of princess parties in her future, but we don't know how long we're going to love Elmo this much!!

Come stop by tonight, tomorrow, or anytime this weekend.  Someone will be here!  Zoe typically naps between 12:30-3:00, and we're going to try to get her back to that regular routine now that we're home.  O yeah, and come see Music Man!!  That's where I'll be in the evenings...Happy show day, Lovejoy family!! 

nap time for Zoe

We are still improving!  Shunt tap officially came back negative, and every hour just gets better and better.  We've had a nice trickle of traffic in and out today, mostly "in" because she's doing so well and no one wants to leave!  She is comfortably resting right now, first nap all day since she woke up at 7:30.  Everyone is very pleased with her progress.

Thank you for all the birthday wishes yesterday, by the way.  It has to go down as one of the worst birthdays ever, and turning 30 didn't actually have anything to do with it...needless to say, there was not much to celebrate yesterday.  I'm glad I got to celebrate last Saturday.   Good call, Jay!!!  Age is truly just a number and a birthday is just another day.  Who cares what day you actually celebrate!

There is nothing worse than watching your child suffer.  I have never seen anything like that before.  I'm sorry to our visitors who witnessed her at her worst.  Especially with her being so young, she just did not understand any of that!!  I am glad that's behind us, and the really good thing about it all is she's never gonna remember any of this.  She's so young, and a lot of these kiddos have this surgery later on in life.  What a trooper.

We are probably going home tomorrow, as long as she continues to improve and has a decent night.  We are going to do one more dose of the antibiotics tonight just to rule out anything on the pending culture.  Well, I'm off to Lovejoy for final dress rehearsal of Music Man, and both Jay and Elmo are gonna hold down the fort for awhile.  Come on down, and say hi to one happy kid, or come see us at home tomorrow.  Either way, I think you'll be pleasantly surprised.

My one Music Man plug...  http://www.youtube.com/watch?v=7GSPvHOs3xQ 

Wednesday Morning Update

We are doing much better!!  She only woke up twice during the night, both a little bit before pain medication was needed so we have finally figured this thing out.  Dr. Swift popped in this morning and said she needs at least one more night here.  Results from the spinal tap are not in yet, but the antibiotics can be administered at home even if it does come back positive.  As long as she keeps improving, we will probably go home tomorrow!

She is loving all her new toys and stuffed animals from visitors, got a little bath today, munched on cheerios and fruit loops, and is slowly becoming more and more like the Zoe we all know.

Thanks to all of you who have prayed for us, brought us food and gifts, made stops in and out of the hospital, sat with us, and comforted us.  Your generosity and willingness to care and comfort means the world to us.

Zoe this morning on a wagon ride.

Update

We have not been able to keep her calm all day today.  She has had some unconsolable fussiness and crying.  This is typically not associated with this surgery.  We noticed some continual wetness from her head, but everyone just assumed it was sweat because of the crying.  Turns out, she is actually leaking from one of the holes from a pin from the surgery.

The pin used to hold head still during surgery pierced her skull (by design) but that allowed the same fluid that is pulled away by her shunt to leak out of that hole.  It's stitched up and the CT scan was negative for bleeding, but there could be infection due to possible exposure to bacteria.  We are doing a shunt tap now to test for bacteria.  If negative, 48 more hours in the hospital, if positive another week at minimum.

Prayers needed.

We are at Medical City Dallas Tower D Room 636 if you want to stop by and say hello.

Update

She could come home today, but Dr. Swift seems to think she might be better off staying one more night.  He was very optimistic in thinking she could come home early because of not having to do all of the extra procedures during the surgery, and he said we could absolutely push it and take her home...it's completely our call.  I think one more full day and night of staying here where we can monitor her as she comes off the sedation, and we will be good to come home tomorrow.

We did not do a great job of staying ahead of the pain last night.  Zoe has also been heavily sedated, and she seems to be fighting that a little bit.  Jay stayed with her last night and said she was up several times crying.  He is such a good daddy - cuddling, consoling, tending to her every need and cry - Zoe is one lucky little girl.  She is now off of the sedation so she will be waking up when she's ready.

We will move out of ICU this morning hopefully into a regular room.  Please come visit if you would like! Or you can come visit at home (tomorrow most likely!!!).  Let's pray we find the right mix of love, wisdom, and pain medication dosages to get through these next 2-3 days of head-aches for sweet Zoe.

Call or text...Brooke's cell 214-893-4539

Road to Recovery

Zoe did great today!  She did better than anyone expected, and she was able to start recovery much quicker than anyone anticipated too...mostly due to a very unusual event during surgery.

Dr. Swift performed the first procedure (of several anticipated steps) of the surgery and immediately saw results.  The pressure that has been causing all of the issues was relieved almost instantly.  He even showed us the video from his iPhone.  That's it.  It shocked him most I think!  He said it was not something he was expecting.  He was very pleased and also said that it shaved off 2-3 hours of surgery.  Outstanding news!!

Unfortunately, Zoe woke up pretty hard from all of it.  I was thankful to be with her immediately following the surgery because the pain was just awful.  She was in and out and not responding to anything.  Jay is definitely parent-of-the-year...I went to be with our musical cast and crew tonight at the first dress rehearsal, and he stayed with Zoe as they settled into her room in the PICU.  Grammy, Papa John, and Jenna all took shifts tonight too.  So thankful for all of Zoe's support system...couldn't do what I do without ANY of you!!

We will have more information in the morning, but I just wanted to tell you all how God has been glorified throughout this entire day.  He did more than we could think of or ask for, and we were peaceful about it all.  We are thankful for the our Prestonwood family who went above and beyond today, our sweet family who sat in the various waiting rooms and sent food and brought treats, and our amazing Lovejoy family and friends who visited and touched base all throughout the day.  You are all loved and such a blessing to us. 

She may be able to head home tomorrow (maybe!!)...talk about a wonderful birthday present!!!  She is a trooper and such a sweetheart...can't wait to get her feeling better!!

Zoe's Surgery

We are all set for tomorrow morning.  Zoe's decompression surgery is scheduled for 10:30 am.  They have allotted 6 hours for the surgery, but they hope to be done in much less time.  We are going to check-in to Medical City at 9 tomorrow morning.

Jay and I are confident that this is just what's next for Zoe.  She is going to do great, and we are fully expecting the best outcome and nothing less.  Many friends and family have ministered to us this week, and we are so strengthened and at peace about this decision.  We had a special prayer time with her this morning during Bible Fellowship and members of our class just poured out their prayers over her.  It was sweet and heartfelt and powerful.  Zoe even chimed in with the appropriate "Amen!!" 3 different times.  We know of many others who are in prayer for us as well.  Just know that we feel very encouraged by you all.  Thank you.

Here's a picture of our cutie pie this morning before church...of course Elmo had to be in the picture too.  She's changing from a tiny baby into such a little girl these days!!

Changes Part 2

What a difference 3 days makes!!!  We were given some interesting news on Friday...puts a little twist into our plans, but what else is new in our lives????  Nothing ever goes as anticipated around here.  We are just trying to put our trust in Jesus right now and hope for the best outcome possible.

The night time screaming and crying hasn't really stopped yet.  We thought we figured it out, but we could be wrong.  Dr. Swift (Zoe's neurosurgeon since Day 1, literally Day 1 of her life) suspects Zoe is experiencing sleep apnea, a very common condition seen in people with Spina Bifida.  Sleep apnea is basically when you stop breathing during sleep.  There are 2 kinds of sleep apnea that I know of and one is related to a physical condition.  That would explain why she stops screaming immediately after she is picked up in the night.  If she were refluxing, she would probably continue to cry and fuss.  Since the surgery is inevitable, we have opted not to have the sleep study performed.  It would be a colossal waste of time just to determine if she needed the surgery...somewhat redundant.  

After going over the doctor's observations, he recommended bumping up the surgery.  Zoe certainly needs to start sleeping normal again, not to mention Mama and Daddy.  Plus he fully expects to see results right away.  We will see improvement almost immediately in her swallowing efficiency, jaw strength/learning to chew, sleeping, decrease in her silent aspiration (liquid in the lungs), I could go on and on.  So surgery is now happening next week.  This is what Dr. Swift had available, and we didn't have a good reason not to do it at that time.  

Decompression surgery is very routine...to doctors of course, not to mamas and daddys, grandparents, or aunts and uncles of sweet baby girls.  To us it's much different.  It's a 6 hour surgery and 4-5 days in the hospital.  It's nerves and sleeplessness and anesthesia and waiting rooms.  It's trying to explain pain and IV's and beeping machines and needles to a 23-month-old.  It's unplanned time away from crazy jobs and all the stress and impact that has on others.  On the other hand it's also a time to fast and pray and press in.  It's an opportunity to use our faith in Jesus and our hope in the gospel.  It's a chance for God to be glorified in our lives.  

Needless to say, it's about to get ridiculously busy.  There is a lot to be done this week in preparation of the next.  Not only are there lots of things happening in choir world, these next 2 weeks are the 2 weeks before Music Man (I am the LHS Assistant Musical Director).  Jay has a lot of big projects happening at work as well.  We are fortunate though - Jay has the most understanding and flexible boss, I work with the BEST choir director and students in the WORLD, and Jay and I of course have one amazing support system in my family.  (Have I mentioned how much I love my family??!!)  Everyone is so understanding and sweet.  We (I mostly) just have to take things one day at a time.  Easier said than done.

Thank you for keeping up with us and we will let you know if anything new develops.  Have a great week.  

-B, J, and Z

Changes

Jay has always told me that change is the only thing that is constant...might as well embrace it.  We all have our set ways and there are areas in everyone's life where we just don't want to budge!  Well, it feels like Zoe is in constant motion...always moving forward.  She is changing every single day, and I am finally learning to embrace it.  Every time she does something adorable, or says something hilarious, I am learning to cherish it with all my heart because she might not ever do it the same way again!  She learns quick from her mistakes and is a different person every single day.  I wish we could all be more like her!!

This week Zoe has:

• finally said "Jenna" instead of "nenna" (we almost cried!)
• started saying cheerios...slow progression from chuh's to ear-ios and now full blown cheerios
• begun saying all the colors of the lights at stop lights...it's incredible!
• started expecting prayer time in the car right before we get out to go into her school
• finally figured out what she likes to do right before bedtime...she LOVES to read
• actually cried LEAVING church instead of crying when we drop her off
• learned "leg up!!!" and plays it with herself
• become very consistent with please and thank you

I am probably forgetting so much more, but it's proof that we MUST keep trying new and different ways to approach everything we do.  We all must learn to adapt, problem-solve, and be willing to try new things.  Don't get me wrong.  She's also one of the most stubborn, sassy, and strong-willed kids I know, but those characteristics will definitely pay off in her future physical development.

Brief medical update - Zoe has been waking up screaming in the night for a couple of hours for the last 3-4 weeks.  We were so confused by this because she also did not want to go to sleep either.  She didn't want to eat or drink really, just didn't want to be in her room.  We tried EVERYTHING.  We finally got smart and called the doctor who told us she may be refluxing more now.  She's already taking Prevacid, but it turns out the Chiari (the malformation in Zoe's brain which is changing position and causing pressure and additional spinal fluid) could be pinching the nerve the causes reflux.  She's probably feeling that terrible burning from the reflux.  I just feel so sad for her!  I've never experienced that, but it sounds awful.  We are adding extra antacid before sleeping per doctor's orders and elevating the head of her bed.  All is well and we are just about back to normal - going down easier and sleeping through most of the night again.  If necessary, we will get the surgery bumped up.  She may be needing it sooner than February 28.  We will know more Friday morning at her consultation with Dr. Swift.

"Uncle Varian" is keeping Jay extremely busy this week...we haven't gotten to see much of him especially since he pulled an all-nighter.  We hope he gets a break soon!!  Thank God I have had the privilege of baby-sitters 2 out of the 3 nights this week :)  Plus last minute help picking up Zoe today.  

Lovejoy kids are taking finals this week, but they are still celebrating our 5 All-Staters from last weekend's auditions!!!!!!!  Bethany and I are so proud of our kids and all of their hard work.  This process brings back so many good memories for us too.

Thanks as always for keeping Zoe in your thoughts and prayers.  We are thankful for you.  Have a good night and a great rest of the week! 

Time to give thanks!

Things and people I'm thankful for this week (Colossians 1:3)...people who love and care about Zoe - Jenna (a fabulous baby-sitter, house cleaner, care-giver, and helper in general), doctors and therapists, Bethany (my incredibly supportive and understanding best friend and co-worker), my parents and in-laws who would do anything for Zoe, and of course my wonderful husband who loves me unconditionally regardless of how little I've slept and how short-tempered I have the potential to be. I haven't been myself this week, but with all of that said.......

We got the news about Zoe's pending surgery.  It's no longer pending.  It's definitely happening. Next month on February 28, Zoe is scheduled to have decompression surgery. From my current limited amount of knowledge of what's going on internally, Zoe's got some extra spinal fluid pooling in the base of her neck. Information was taken from a routine MRI, and Dr. Swift (her neurosurgeon from the beginning) made the decision to proceed. From a separate test (her barium-swallow study), results showed her swallowing challenges are also worsening. Spina bifida takes its toll on growing children and it sometimes doesn't do them any favors. Not everything in her body was in the right place to begin with, and now as she is growing things are shifting in the wrong direction. We are obviously not thrilled with the news that surgery is necessary, but we are hopeful that this will help her out in lots of areas, developmentally and physically. As we learn more, we will communicate with you all. Thanks to all of our prayer warriors out there!! We are thankful for you!! God is faithful and he will be with us throughout this next chapter of Zoe's life.

In addition to that bombshell dropped on us this week, we got a call from our realtor strongly suggesting we try to get the house on the market soon. He has seen quite a spike in house sales and new listings which suggests more traffic in showings. With the help of Jenna, we are on our way to re-listing the house!

Jay is on daddy-duty this weekend, as I will be in Commerce with a few extremely talented Lovejoy singers auditioning for the Texas All-State Choir. Bethany and I are very excited for our kids! Each of them are incredibly deserving of this recognition.

Thanks for all of your support during this time. Hope y'all have a nice weekend!

Back to work we go!

Hello, 2012 and hello, routine!!  That is one thing we are all ready for again!  The last 2 weeks have been absolutely amazing around here, but it's time for school to start for me and Zoe, and it's time for Jay's work to kick off again.  We all enjoyed sleeping in until 8:30 everyday, staying up way too late (even Miss Thang), shopping at Watters Creek, playing outside in the beautiful, mild weather, hanging out with "Sissy" (Maddy, from Georgia), and catching up with those special loved ones.

I don't say this enough, but I truly love spending time with my family.  I gave up more organized gatherings in these last 2 weeks than I ever thought I would, just to east shells 'n cheese (Zoe's newly discovered favorite food) with my almost-23-month-old.  We toasted Matt and Robin (my sister and bro-in-law) with Zoe in our arms at 10:30 on New Year's Eve, instead of going to a party.  I stayed in my pajamas playing all day on our dusty hardwood floors just because I didn't want to miss one precious moment with Zoe.  She's growing up each and everyday.  Jay and I found just about every beautiful LED-lit tree in the metroplex just to hear Zoe's enthusiastic squeal of joy when she shouted "tcheeee!!!" I got to hear her cheer with the rest of us when my sister got engaged the day after Christmas.  Got to FaceTime with my in-laws on MY Christmas present, my new MacBook Pro!  Zoe gave the sweetest kisses and hugs through the screen.  I'm sure it sounds like everyone else when I say this, but I love my family and can't get enough of them!  I also have the BEST parents in the world who drop everything when we pop in and rush over Christmas day just to see Zoe's new lego table.  They love her so much.  They love their kids so much.

I have a lot to learn about life, but 2011 taught me how to put my family first.  See, when you have a little bit of Zoe and Jay in your life, it's easy.  Zoe keeps me on my toes, and Jay keeps me in check.  And they both keep coming back, even when I mess up.  There's pretty much never a dull moment around here.

We are all excited about the new year.  Jay and I are training for our 2nd half marathon.  He will actually get to run it in March, but I'll run it solo while on Choir Tour in the Hill Country!  We enjoyed training together this past fall for the Scottish Rite Marathon.  We keep each other encouraged and accountable, so I'm doing it without getting the medal this go around.  We get to celebrate Zoe's 2nd birthday next month....pretty sure a princess party is in the works!!  We are prayerfully awaiting a doctor's report this week regarding a pending procedure for Zoe.  I am excited about the spring semester at school - musical, solo and ensemble, UIL, spring trip, Pop Show...it's all good stuff!   We are also hopefully selling a house this spring.  We will put it back on the market next month most likely.  That's about all we know to expect in 2012 so far.  Not bad for January 2nd.

I will do my best to blog and post pictures and video.  I know you're probably not interested in my life as much as Zoe's, but as you can see we are a little busy around here.  Everyone's busy though, so that's not a valid excuse!  Hope your Christmas was joyful, your New Year's celebration was memorable, and that you got to spend time with the special people in your life.  As hard as it is, let's all try to to find time to love our families and dear friends a little more this year.  They keep us going when things are good and bad.  Love to all and have a great week of getting back to routine!!!

Here are some favorite pictures from the last couple of weeks.

Tell "Tanta" she wants something BIG! 

At the Dallas World Aquarium

Opening Bella her "baby" on Christmas morning

Christmas Eve at Grammy and Papa John's

Zoe and Papa John

Zoe discovered her love of unwrapping presents and playing with the paper and bows

Sleeping in on Christmas morning?????  Probably our last....

Zoe up with Daddy, probably in the middle of the night

Zoe opening her new favorite "no-man" from one of her sitters, "Aunt Deb"