My Boo Boosies

What a crazy few days this has been.

We brought Neely home (for the 4th time?) on Sunday the 16th.  A week ago.  That was after they admitted her for anemia which turned out to be, "yep ... she's anemic".  Monday, Tuesday, and even Wednesday were great.  We had a few ostomy bag issues, but other than that the Lucquete house was probably the happiest it had been in months.  Neels slept pretty much throughout the night and smiled away the day.  We had a couple of nice family dinners with Neely claiming a spot at the head of the table (on her little changing table cushion).  It felt so awesome to sit around the dining table, saying grace while holding her hands.  Without having to run around between Grandma's, Dell, and our house, I actually had time to make dinner!  It was awesome having my girls at home.

Enjoying her swing (thanks Aunt Keri!)

Very carefuly, a little time outside

We had an appointment on Wednesday at Dell with her hematologist.  The visit was pretty uneventful ("yep ... still anemic").  My friend Rhea stopped to visit us at the appointment, very cool.  By Thursday morning, I was really feeling pretty good.  We seemed to be on an upswing.  Only one thing ...

I forgot it was friggin Thursday.  Thursday seems to be the day when the bad stuff happens.  I don't know why.  It seems statistically impossible for things to always go wrong on Thursdays, but somehow they do.  I remember being at work and being almost myself again.  Cheerful and focused and busy.  People asked how Neely was and I was able to say, "She's doing great!"

Around 2, I get an update from JD that she had been fussy all morning (RED FLAG) and had a slight temp (RED FLAG).  He tells me that he is unswaddling her and will take her temp again in a few minutes.  I try to believe that everything will be okay and that maybe she was just swaddled too tight.  Deep down I already know.  My baby is never fussy unless she is in pain.  The next update is that her temp is climbing.  I push back from my desk and start crying because I know what happens next.  Special thanks to Irene, Amie, Jess, Shirley, and my other coworkers for helping me through those next few hours.  I called her GI doc's office and was told she probably had an ear infection and to call her pediatrician.  I called Josh to ask him to hurry home and take a look at her.  When he got home, he was able to get her temp down with some cool washcloths.  I called again to check on her and he said she was holding her breath and trying to bear down as if pooping.  She seemed to be in a lot of pain and he was taking her to the ER.  The next time I called, he said EMS was coming because he didn't know if she might stop breathing on the way to Dell in 5 o'clock traffic.  I left work to meet them at Dell.  I got there too early and tried, through tears, to check in at the front desk.  Not sure if I made any sense at all.  Thank God my brother and Judy showed up to wait with me.  They put us all in ER room 24 and we waited for Neely, JD, and Josh to get there.  When Neely got there, she was super pale, but alert.  She was making little raspy painful sounds and there was not much I could do to help her calm down.  It's kind of a blur to me what happened in the ER, but I do remember them saying she probably had a virus and was a little congested.  I tried to explain her history and what we thought was going on (see post by Jack, below).  As I did this, they were doing some horrible procedure that involved flushing out her nasal cavity.  They pulled out a little mucus like "tada!  here's your culprit", and I think we all just prayed that a doctor that actually knew her would arrive soon.  But no ... a surgeon came to look at her and decided to flush out her stomas and rectum.  Josh asked how much the doc wanted to flush with because she is tied off inside - there is nowhere for liquid to go and we were concerned she would burst inside.  For some reason, this doctor seemed to think we were calling him inept because there was some remark about how he had been doing this for a long time and he was pretty sure he knew how to flush, etc.  We quickly explained that we just wanted to understand what was about to happen.  Then we watched as he flushed her jejunostomy, her fistula, and her rectum.  All with the same little tube.  A little green stuff came out of the first two, and some mucus came out of her rectum.  She got a Tylenol suppository and seemed to feel some relief.  Antibiotics were started and we were moved to the PICU.  Aunt Caty, bless her heart, came to see Neely while we were still in the ER and joined us for our move to the PICU.  By this time, I was mentally exhausted and it was awesome having Caty there to answer questions about Neely's time in the NICU.  She went immediately into War Room mode and put questions up on our dry erase board.  She was vigilantly watching everything and asking all the right questions.  She stayed with us until 1AM, enduring our weirdness and Uncle JD's hadn't-slept-in-over-24-hours bad jokes.  Words do not describe how we feel about our Caty.  Jack was right in his last post - she is like Neely's guardian angel.

Anyway, back to the PICU.  Neely seemed to do a little better, but then quickly got worse.  She made some of the most painful crying sounds I have ever heard.  She spent the next day and a half  making a painful whimpering sound during every - and I mean EVERY - exhale.  Even with morphine.  Even with antibiotics.  I didn't think she had any more energy to go on.  Can you imagine spending almost 2 days feeling that kind of pain? I couldn't sleep much, hearing her make that sound.  Like a tortured animal.  It made me think how I had in recent years had to put my two 16-year-old doggies to sleep because they were in pain.  As soon as I knew they were in pain and would not get better, it was clear what the right thing to do was.  I wouldn't let an animal suffer and here I was, listening to my baby daughter struggle in pain with literally every breath.  For almost two days.  We kept asking for more morphine.  Please feel her belly?  Doesn't it look swollen?  Can she please have some Tylenol?  Her temp is up.  She's really red.  Really - the CT scan and X-rays showed nothing???

Finally early Saturday morning, the surgeon who has done all of her surgeries saw her and decided she was not improving, her belly looked swollen, she was not responding to treatment, and it was time to take her unused intestines out.  We knew this was coming.  We wanted someone to say this.  Somehow, it was still a shock.  Surgery during a fever and infection is not ideal.  

After watching her struggle for so long, I was afraid she was not going to be strong enough to make it through the trauma of such a major surgery.  I talked to her, whispered in her ear what a good baby she was.  How proud she made us all.  How strong she was.  How no matter what, she was going to get to rest and not have to fight so hard.  I told her we loved her so much and to not worry.  I told her over and over just to do what God tells her to do and it would all be okay.  In weaker moments, I begged her not to leave me.  Jack and my mom came a little before they took Neely to surgery.  We all prayed for her.  Josh told her how amazing she was and how in her short life, she had already taught us so much.  He told her how grateful he was for her teaching him how so many people - friends, family, and strangers - could come together and do wonderful things for someone in need.  With 2 minutes to spare, the chaplain on call walked in and baptized Neely with holy water from Lourdes (from a trip many years ago).  All too soon, I was handing her over again for surgery.  How many times have we watched them walk away with our little girl to the operating room?  

Meanwhile, in San Marcos, things were ramping up for Neely's benefit, a BBQ fundraiser.  We had so hoped to be there, but thankfully, JD and Josh's mom were able to attend on our behalf.  My sweet friends texted me lots of pics of the event.  I truly feel that these pics sustained us during what was an incredibly scary few hours.  There was a BBQ plate, bake sale, and even some crafts for sale.  Volunteers stood with signs, bringing in traffic.  It was a huge success!  We have such ridiculously amazing friends.  And our friends have ridiculously amazing friends.  Josh and I are still baffled as to what makes people spend a perfectly nice Saturday volunteering their time to help our little girl?  Yes, sometimes it takes a village to raise our little families, but I guess it's different when you can actually see that village, all gathered up in one place with smiles on their faces and a spiritual energy in their hearts.  My Texas Oncology family does this - we do it for Relay for Life and Race for the Cure.  We do it for loved ones lost, sweet patients and coworkers who have passed.  But this time they were doing it for our little girl.  Our little Neely.  There are no words to describe how that feels for us.

Back to Dell ... the surgeon came in and said he was very pleased with the surgery.  He said she lost a lot of blood - 140 cc's or so, but that it had been replaced.  He said, with guidance from Pittsburgh, he removed all of her unused intestine, large and small.  He removed her gallbladder.  She no longer had a mucous fistula.  She only had about 2 inches of colon left above her rectum.  He said she was doing well and that his concerns were about the cavity left behind where her intestines had been.  It might make transplant difficult because there will be size issues between the transplant organ and the space she has to accommodate it.  He mentioned possibly implanting a device at some point to keep this space wide enough.  After he left, a flurry of nurses and doctors came in with Neely, working like a well-oiled machine all around her.  Pumps, catheters, an arterial line, a breathing tube, etc.  There are so many "things" keeping her going right now.  Let's just say this would be a really, really, REALLY bad time for an apocalypse.

The doctors warned us that she would be very swollen and that things would likely get worse before they got better.  They would be on the lookout for blood pressure problems, fluid in the lungs, not enough urine, etc.  The warning was good because she did indeed look swollen.  Swollen and red and surrounded by IV tubing, with a breathing tube taped to her face.  The nurse assured us that she would be watching closely for signs of pain.  Neely is on a Fentanyl drip, with Versed for sedation.  She is totally night-night.  

Even though she looks terrible, I feel better knowing she is not fighting this by herself anymore.  She is relaxed and sleeping.  She is surrounded by nurses constantly, monitored intensely.  In a way, I feel like we can all relax for a little while.  I actually left last night to go home, shower, and spend some time with Laney.  I'm sure that's not how every mother would handle this situation.  I guess I know myself too well.  If I sat here eavesdropping on every conversation they had about Neely, watching every number on the monitor, measuring every drop of urine, I would go nuts.  That's like watching your 401k.  Things will go up and come down.  All I need to know is the overall.  Is she improving or is she getting worse?  

As of today, right now, she is improving.  Temp is good.  O2 saturation is good.  Swelling is going down.  She is making lots of urine.  Heart rate is good.  She is less red.  She is sleepytime.  She is not going to remember this.

Less swollen, day after surgery

  

P.S. Next post will be about the fundraiser and the many, many good folks who helped/donated.  Thank you all so much for everything.

Neely Returns to Dell, My Big Sister, and Other Thoughts

It is 2:00am.  Me and JD just got back from Dell Children's Hospital.  Neely, Kat, and Josh are still there.  Neely has been admitted (Round 4) to the PICU, and they're still running tests.  Still waiting for labs... It's Thursday... (well, technically, Friday now).  This always seems to happen on a Thursday.

Today was one of the scarier days... It's still scary.  When JD and I left (JD not having slept in well over 24 hours), Neely was still groaning and moaning every time she drew breath... but apparently it was better than when she arrived by EMS... I'm gonna leave that to Kat to post about later...

I just wanted to talk about my sister.  My sister is incredible.  Today, I witnessed one of the most courageous acts I've ever seen.  When the doctor first arrived to get Neely's history, Kat spoke.  As she spoke with the doctor, the nurse and ER tech starting doing things to Neely that caused the most blood-curdling, agonizing screams I've ever heard come from anyone or anything.  It was horrifying.  And given that she already seemed so fragile and is mostly a happy baby, we were all visibly disturbed.  Yet, through tears streaming down her face, Kat held it together and gave Neely's history in a way that none of us could.  (I hope the Lucquete boys aren't offended when I say that Kat's the best talker among all of us.)  You could hear Kat's heart break through each squeal and plea... but she handled the entire situation with an extraordinary grace under fire.

True, answering a doctor's questions shouldn't command a medal or anything... but imagine the thing or person you love most in the world screaming in a way that shakes you to your bones... and it is your every instinct to drop everything and offer even the tiniest bit of comfort.  Imagine trying to hold your mind and your composure in the face of that insanity.

Maybe it's especially meaningful for me because I grew up with her.  I'm not used to seeing that steadiness, especially under the most extreme circumstances.  But she held it together.  I feel like it held us together.  It almost felt like a rallying cry.  She didn't break, so no one else could.

Through this entire ordeal, my sister has amazed me.  She's an amazing mother.

As for Neely... You look at Neely and marvel at how this seemingly fragile baby can withstand so much... and smile.  My family is made of sturdy stuff.  And I'm so beyond proud to be a part of it.

Other random thoughts...
- As unfortunate as this sounds, some of my fondest memories from all this are gonna be when me, Kat, Josh, and JD are standing around Neely's hospital bed bantering.  We bring out the silly and the fun and the love in each other.  The best laughs I've had lately are those times, and I hope we're not doing Neely a  disservice when we surround her with laughter... Maybe we're just making up for lost time at the dinner table.
- Special thanks to Aunt Judy and Aunt/Nurse Caty for coming by tonight.  Judy was at the ER with me and Kat before Neely, Josh and JD even showed up.  As always, she brought some much-needed levity and tender loving care to a rough situation.  Caty arrived a little later and stayed with us 'til around 1:00am.  She's been my niece's guardian angel since Neely's NICU days, and it sure brings comfort to us that her guardian angel is one of the best nurses in the world.
- We're all very-much looking forward to the BBQ fundraiser.  We are so very blessed to have friends doing this for us.  I will try to post more about this later as every single email from Lori that Kat shows me about the event makes me so insanely happy. 

"Thank you" will never be enough to the kind people that are helping us through this time.  We wish we could do more to show our gratitude.  Your kindness sustains us.  Each thought and prayer.  Each message and email.  Each like and comment and donation... All of it helps us to face what's next.  So, until we can do more, please know that we all thank you from the bottom of our hearts.

Miss Neely is on her 3rd admission to Dell Children's.  This time she was admitted for something I was hoping would be minor - anemia.  She has always been anemic.  Previously, the NICU would give her a blood transfusion and call it a day.  This time, Dr. Rangwalla (Gastro doc) wanted her admitted for a transfusion, but also wanted to get a better idea why she is anemic.

So far, nothing is really jumping off the page, result-wise.  I'm kind of hovering between panic and "that's just how she is and we will manage it."  We might have gotten discharged yesterday, but then her Hemoglobin level dropped again, so they will likely do another lab today and transfuse her anyway.  There was still hope we would bring her home later today or tomorrow, but Neely started throwing up again last night.  Not sure how that affects things.

We've realized now that she seems to throw up whenever she is off of antibiotics (last dose Friday morning).  Apparently, antibiotics improve motility of the gut and the positive side effect of her being on lots of antibiotics is that she can eat.  I assume that GI will meet with us today about giving Neely some kind of low dose antibiotic or other med that will allow her to keep her food down.  How that will affect her unused intestine remains to be seen.  Her unused intestine has already flared up twice because one antibiotic allowed  different strains of usually harmless bacteria to grow out of control.  Such a balancing act, this kid.

We are already on "gut watch" anyway.  Neely did GREAT at home for 6 days.  She did not cry a lot.  Did not seem to be in pain.  She slept well, drank milk well, and was mostly cheerful.  That was on antibiotics, though.  The true test of what our next year will look like will be this following week.  If her unused intestine starts to flare up again, then she will need to be on antibiotics all the time.  Or the surgeon may decide to take her unused intestine out.  This could be a problem for transplant because the blood vessel that's connected to this unused intestine will get smaller if it doesn't have a major organ to supply blood to.  We need this blood vessel to be big and meaty for transplant.  At least, I think that is what the surgeon said.

So here we are.  If she doesn't get antibiotics, she will throw up and her unused intestine may flare up and make her very sick.  If she gets sick, there is a risk that her central line (IV site) will get infected and she will need surgery to find another site.  If she does get antibiotics, she can eat and possibly avoid intestinal infection, but long-term antibiotics are not great on the system (and her liver and kidney are already at risk to begin with).  Oh ... and also, she's anemic.

We need to manage all this internal stuff and still deal with the external stuff, too.  Her jejunostomy, her mucus fistula, her g-tube, her Broviac.

And then there is the developmental stuff.  Her head circumference is small and she is underweight for her age (of course).  How does this affect her developmentally?  We have to work with her, give her lots of visual stimulation, lots of interaction, tummy time, etc.  Since last Thursday (appt at developmental clinic), she has already improved so much.  We work with her a lot on tummy time, grasping toys, and using her feet to push against us.  She is becoming more vocal - lots of cooing and squeaking.  I'm aware that she is smaller and probably a little behind developmentally, but at this point she does not seem to be unable to catch up.  Since we don't have to spend much time changing poopy diapers and feeding her, we have a little extra time to just play.  Playing with her is hard, though, because if you pick her up the wrong way, her ostomy bag can break and leak harsh digestive stuff all over her sensitive little skin.  The kid loves interaction and snuggles, though.  Her favorite position is on our left shoulder.  There, she pretends to nuzzle our necks - it is just an excuse to scratch her face.  Feels nice, though.

How could we do any of this without Josh's brother, JD?  Oh my goodness.  He is going to be such an amazing daddy someday.  I feel bad that he is taking such a massive detour in his life for us, for our little girl. Neely will be absolutely inseparable from Uncle JD someday.  While mommy and daddy sit around worrying (and lately, bickering) about her, Uncle JD is there with big smiles and seemingly infinite patience.  He is awake longer than any human being should be on a daily basis.  This past week, he seems to be awake from 9PM to 3PM the next day.  He comes to Neely's appointments.  He stays with her in the hospital, if needed.  He is so focused on Neely, always thinking about her.  He probably starts up conversations with strangers in the grocery store about ostomy care.  We love him to death and will never be able to pay him back for this.  He did mention wanting 4 kids someday, so I guess we owe him LOTS of babysitting.

JD and my mom handle the "day shift".  This means taking care of Neely and crazy Laney.  I'm sure my poor mama envisioned something much more fun for her retirement.  She missed a high school reunion in Vegas after Neely's second admission to Dell.  I know it meant a lot to her to go, but she did not hesitate when it came down to canceling the trip.  Mama - thank you for helping with Neely, crazy "Waney", the dishes, keeping the house clean, and keeping the guys fed.

**Interrupting this post with a text I just got from Uncle JD**

Already asked her if she was ready to start ninja training for the morning ...she smiled so that's a yes to me.  We're starting with ninja stretches and ninja stand-ups (not comedy, ninjas don't joke around about that sh*t), and doing ninja fist exercises the whole way through.

We're going to have to talk to her about smiling so darn much.  Ninja attack mode is less intimidating with smiles.  It must be the pirate side of her peeking out.

**OMG, he is too awesome.  Okay, back to the post**

So anyway, we are back at Dell and I'm not sure how long it will be.  I've jokingly (but not really) asked if we can just keep a locker at Dell because constantly packing a suitcase and lugging our stuff over there is not fun.  Seriously, Dell, get on that.  Lockers for repeat offenders.

We're on the 4th floor now, so it's a whole different set of nurses.  They are great, but we miss Noor and Bryce.  I wonder if it would be weird to go to the 3rd floor and say hi.

So, the not-great thing is that we're back in the hospital.  The great thing is .........

WE GOT A CALL FROM PITTSBURGH!!!

They want to see Neely for evaluation, so we're planning for the week of October 8th.  This is the next step in the game plan and we're super excited about it.  They said it will be a week-long evaluation and we will have lots of classes and training to go through.  There will be a fold-out couch in her room so we don't need to get a hotel room.  Not sure if insurance will cover the flights to and from Pitt.

"The Plan" as helpfully outlined by Aunt Caty.

Praying we are not in the hospital on the 8th.



More great things:

Caty came to see us in the hospital (2nd admission).  We missed her so much!  I hope she doesn't mind me posting this pic.  We're officially calling her Aunt Caty from now on.  Hope she doesn't mind that either.

Aunt Judy came to visit us again also!

Aunt Jenny and Grandma Elisabeth came to visit us when Neely was home.

There is a barbecue fundraiser for Miss Neely in San Marcos on September 22nd at 10AM.  Please come join us at Texas Oncology for this event.  Love and shout-outs for the Texas Oncology crew, Belinda N, and all the wonderful students at Texas State helping out for this event.  Check out the beautiful flyers:

My friend Lindsay says she might have an autographed Spurs jersey that we can raffle off for Neelycakes.  How cool is that???

Though she hasn't met her yet, Neely has a little BFF who is using every ounce of her cuteness to help with Neely's fundraiser.  So ridiculously cute.  Thanks to Aubrey, Sonnie, and Angie for all of the love and support.  This pic made me cry (happy tears)!

It's amazing the way your friends and family step up in a crisis.  We've had so many supportive calls, texts, emails, and shares on Facebook.  We are so blessed.  Thanks from the bottom of our hearts.

Miss Neely can sleep peacefully and smiley-faced because she's got an awesome circle of love surrounding her.  Angels everywhere.

BBQ Fundraiser!

We are very pleased to announce that on Saturday September 22, 2012 from 10:00am to 2:00pm, there will be a BBQ Fundraiser for Neely in San Marcos (1308 Wonder World Dr).  If you are able to make it out, please come join.  Plates are $8, and proceeds will go towards Neely's transplant.

For ticket information, contact us at Neelyssong@gmail.com.

A great big special thanks to Belinda Nettleton and her team & the wonderful folks at Texas Oncology for their work in putting this together.

There are some great nurses at Dell Children's.  We have at least 2 that we really like - Noor and Bryce.  They seem to have made a point to get to know Neely (and us).  Since we see and interact with them the majority of the time, they have made our stay at Dell Children's very pleasant.  We also enjoy meeting with the doctors (surgeon, infectious disease, GI, etc).  That being said, I don't think I like the resident thing.  I'm still not sure how it works, but I think a resident pediatrician is assigned to her during each shift.  There is another doctor that oversees the residents, of course, but let's just say there are some residents who come across as more capable than others.

I'm calming down, but I was super upset earlier this morning.  One of the residents who seems a little shakier than the others came in to check on Neely.  Things were going well and she observed that Neely was doing a lot better, no fever, no output from fistula, in good spirits, rash improving, etc etc.  She asked what our plan was and I told her we'd like Pittsburgh to evaluate her for transplant.  She asked if we had home health set up.  Then she asked if we had talked to HOSPICE.  What the heck?  Where did that come from?  Why would we be talking to hospice about the smilingest, happiest, sweetest baby in the whole world?  As long as the answer to the question, "Does she have a chance at a better life?" is still yes, then we will not be talking about palliative care.  Yes, she has some big challenges ahead.  Yes, she has dealt with a lot more pain and crap than some of us will ever have to deal with.  However, she has a fighting chance and I am not taking that away from her.  If you've ever really looked at her as something other than a patient, a body on a hospital bed ... if you see her smile and see her little curious eyes following your voice across a room.  Or hear her little cooing sounds.  Really?  You would just stop giving her IV feedings and let her starve and die?  Did you really just ask me that?

My actual answer was: "No."

"Oh okay, just checking".

So mad.

Anyway, the good thing is that my anger is making me write.  We've been so busy that I haven't felt right about taking the time to update here.  As you may have guessed, Neely was readmitted on Thursday.  We had her home for 2 days and then noticed the output from her fistula (which had all but stopped) was increasing again and was a scary reddish-brown color.  She started getting a low-grade fever and per Olga (awesome home health RN), we took Neely early to her scheduled GI appt.  Olga was able to get us in a little sooner to meet with the doctor.  Josh insisted we keep this appointment since we have to establish with GI before we can start the Pittsburgh process.  Dr. Sanders said that she was keeping Pittsburgh up to date with Neely's previous hospital admission.  She said she was hoping they'd see Neely sooner, but they said there really wasn't a point to it because she still needs to be at least 10lbs and preferably 12 to 18 months old.  Apparently this is because 12-18 months is when other little kiddos start going outside and having accidents.  If a baby Neely's current size passed away, it would happen pretty quickly and the intestines would not be viable.  A 12-18 month old donor would more likely pass away from an accident and his/her organs could be kept alive for transplant.  Such terrible facts.  It's still horrible to think that for Neely to get her transplant, another kiddo would have to die.  I can put a face on what 12-18 months looks like because Laney is just a little past that age.  As my brother put it, "Laney was already walking and beginning to talk by then".

We also talked about a different form of TPN with a lipid called Omegaven.  We'd read about this as something that could possibly give her liver a better chance.  It's apparently super hard to get, but they are working on it.

After that, we were sent to the ER and admitted again.  She had a fever and stuff was just pouring out of her fistula.  They took cultures and immediately put her on 2 antibiotics that were harmful to her kidney.  They've since taken her off of those and now she is on 2 that are okay for her kidney.  She has a bad rash, possibly a side effect of the antibiotics.

She is lots better today.  Fever is gone and there has been zero output from the fistula since last night.  Her rash is getting better.  She is all smiles again.  Bryce gave her some Benadryl last night so she was sleepytime and not worried about scratching at her face.

They said to expect for her to be here a lot longer this time.  I don't really want to ask what that means.  2 weeks, 1 month, who knows?  I figure we might as well adjust to living this way for a while.  I miss Laney Lucquete so much.  We don't really want her hanging out here at the hospital, but I'm so used to having her with us at night.  Thank goodness for all the help and support we have.  Mom and my brother and Josh's brother, JD, have really stepped up and made it possible for us to be with Laney or Neely.

Spending time with Big Sister

JD has awesomely volunteered to stay with Neely at the hospital when I go back to work.  He is spending lots of time with Neely.  My brother, Jack, got really close to Laney when she was a baby.  He helped babysit her during the day and she adores him.  I like that this time around, it's JD and Neely who will develop a special bond.  JD is awesome.  He's had to take a crash course in ostomy and g-tube care.  He is fully capable of administering an antibiotic with a syringe pump.  He's so sweet with her.  Even though I'm always nervous to leave Neely's side, I feel a lot better knowing JD is holding down the fort.  (Grandma Lucquete, if you are reading this, you sure raised some wonderful sons.)

We left Neely with Uncle JD a couple of times this weekend.  Saturday, we left around 8PM to go spend some time with Laney.  My friend Judy came back to the hospital to help JD and they apparently had a rockin' good time with Neelita.  They took some great pics and also did an awesome job keeping us informed about Neely throughout the night.  Yesterday, JD spent most of the day with her.  We had lots of fun playing and cuddling with Laney.  Got some housework done also!

Uncle JD!

Neely talking to Aunt Judy

The surgeon just came in and mentioned surgery on her Broviac later this week.  Praying for zero complications and a much better central line afterwards.

So far it sounds like the chorus to Neely's Song is, "We're back in the hospital".  Hope that is not the case.  Incidentally, the name of this website does come from a song I sing to Neely all the time.  It's absolutely terrible, but here are the lyrics:

Neely's Song, Neely's Song
This is the first* part of Neely's Song

Neely's Song, Neely's Song
This is the second* part of Neely's Song

*keep going as long as you want

Neely, Neely, Neely Worm (pronounced with an accent, "wodm")
Neely, Neely, Neely Worm

That's pretty horrible, huh?  It works, though.  I think she likes it.

Special thanks to 1) Philips in San Marcos for raising more $ during their kickball tournament 2) Noor and Bryce for being such wonderful nurses 3) Judy for helping to care for Neely on a Saturday night 4) JD for being an awesome Uncle and putting up with my magillion texts 5) my brother for doing the dishes, visiting us, and keeping us fed 6) my mama, for putting up with crazy Laney Lu and missing her trip to Vegas 7) Laney Lu, for all the hugs, kissies, and cuddles 8) Amaya's Taco Village for yummy chicken tacos 9) Josh's friend Jake & his lovely wife Shanna for buying us a mini fridge for Neely's TPN 10) Sonnie S, for a sweet and thoughtful text just when I needed it 11) Our first web donation!  Thank you!!! 12) All the encouraging words we constantly read on our Facebook pages 13) Neely Lu for being the smiliest, bravest, toughest little champion I know!

P.S. Caty is coming to visit tomorrow!

P.P.S Pharmacy says the Omegaven is a no-go unless Neely is in liver failure.  Kinda sucks, but at least it can hopefully be an option at some point.  Anybody able to get their hands on Omegaven, please send it this way!