The Story

We know that we haven't been the most forthcoming with what exactly happened.  Really, it can be pretty hard to talk about, and there's a lot to remember... This is the best, most concise way I could think of presenting it all.  It's amazing how much can go wrong in a month.  

Part 1: Neely

Neely Jacqueline Claire Lucquete was born on 6/14/2012 via c-section at South Austin Hospital.  Unlike her big sister Laney, the c-section had been planned from the start.  We thought it would be an easy delivery and birth.

From the beginning, something felt off for me.  It took too long.  It was scheduled for noon, but two hours passed.  At around 3:00, I got a picture text confirming that Neely had been brought into the world.  Shortly afterwards, the family gathered in front of the nursery to view the newest addition.

 She looked like a normal, healthy baby with ten fingers and ten toes.  Neely weighed 7 pounds, 3 ounces.  We watched as nurses checked, fingerprinted, and wrapped her while her proud papa looked on.  We watched until they wheeled her to her mother.

I remember that when Laney was born, there was a palpable buzz and excitement in the air.  It didn't feel that way to me this time.  I figured that this was normal because we had already done the whole new baby thing.  But now, I wonder if I felt that way because deep down I knew that something was just not right.

When we were told that we could finally see Kat, we walked by the nursery to her room but noticed Neely was on the table again.  My mother, a former nurse, was the first to know that something was wrong.  Neely was being x-rayed.  She was the only person that realized that that was going on.  But, we figured it was normal, and we continued on our merry way.

We got to the room and spoke with the tired mother.  As we shared this wonderful family moment, the doctor entered and told us that Neely had vomited and spat up some strange colored liquids.  She appeared to have digestive issues.  It was first thought that she had a kink or blockage in her small intestine, and she would need surgery to fix it.  Less than an hour later, we were saying goodbye to the newest addition to the family as she was put in an incubator and escorted by the transport team to St. David's Hospital downtown.  Josh and JD followed.  Kat had to stay and recover.  Kat took that about as well as could be expected.  The life she had nourished... that fragile life that was literally a part of her for nine months as well as the loving husband that helped create that life were now a billion miles away.

In some ways, we're still recovering from the shock of that first day.  It was supposed to be an ordinary delivery for this ordinary family.  You really take that kinda thing for granted.  All those post-delivery plans and fantasies like how we'd introduce Laney to Neely were replaced with the bad thoughts of, "Would Laney ever get to meet her sister?"

Neely had her first surgery the following day.  The surgery was to open up this newborn, find any kink or blockage, and just clean out the intestines in general.  It started at around 10:00am.  Me, Kat, Mom, and Kat's friend Judy stayed with Kat at South Austin Hospital getting infrequent reports from Josh at the other hospital.  This was hard.  The surgery went fine, and Neely was given a stoma.  No kink was found.  The next step was to hope that Neely pooped.  If she pooped, her plumbing worked, and things were more or less fine.

That night Kat was transported to St. David's downtown so that she could be in the same hospital as her daughter.  We were repeatedly told that this wasn't a common practice.  We were beyond appreciative.  After over 24 hours, Neely was reunited with Kat.  I also really got to see my newborn niece up close for the first time.  They said that they took out a lot of the tubes, but there were still entirely too many for my liking.

The time frame of everything after that is kind of blurry to me now, but I remember that something went wrong or there was bad news every day for the next couple weeks.  There was always some new fire to put out or some new unfortunate information to process.  Due to being born with tiny veins (like her mother), she had to have a second surgery to have a central line placed for an IV.

At one point, something in Neely's urine levels became concerning, and the doctors found that she only had one kidney trying to do the work of two newborn kidneys.  We later found out that Neely had two kidneys in utero, but something just... happened.  Of course, you can live with one kidney.  It just means that there would be no contact sports in her future.  The silver lining was easy to find.  Of all the things to not have or be missing or to not have, this was the best one... That thought seems as though it would bite us later.

The doctors gave Neely about a week to poop.  There were signs suggesting that it was an inevitability.  Her tummy made noises.  When they checked the stoma, there seemed to be fecal matter present as though things were moving.  Before the deadline, a little bit of poop came out.  It was hopeful but not very.  It was around this time that she was given the diagnosis of Hirschprung's disease, and a major surgery was needed.

On 7/5/2012, Neely had this major surgery.  The surgery was to open her up and biopsy every 10 centimeters of her small intestine to find which parts weren't working.  The tested parts would be sent to the lab, and they waited for confirmation.  Meanwhile, Neely would still be open on the table.  The bad parts of the intestine would be removed, and Neely would have to live with a shorter small intestine.  The surgery started around 3:00pm.  Kat, Josh, Judy and my mom were at the hospital.  I had worked but was then on babysitting duty with Laney.  At about 8:00, I called to see if there was any update.  Judy answered, and she sounded upset.  She said it was bad news, and she handed the phone to my mom.  Mom said that there were no nerve cells in her intestines.  No part of her intestines worked.  And this meant that Neely needed an intestinal transplant.  This was literally the worst news we could have gotten other than Neely dying on the table.

They got home at around 11:00pm, and we were all quiet.

The new plan (and at this point the word "plan' is humorous) was that she would have to gain weight, and then someday she could get a transplant.  A child that can't really eat or digest anything had to gain weight... She is fed through IV feeding called TPN, which will muck up her liver at some point.  Josh had read that this procedure (which didn't even exist 10 years ago) was in the four million dollar price range.  It all felt so... heavy.  But, this was the plan.  This was the only plan.

Her latest surgery occurred on 7/13/2012.  Up until that time, Neely had a tube that went from her mouth into her stomach to suck out bile that wasn't draining into her small intestine.  A canister was placed on Neely's side that went straight to her stomach to take out the bile.  After the surgery, something happened that was, really, the first sign of good news.  The stoma and NOT the new tube produced what appeared to be bile or fecal matter.  She pooped.  Out of the right place.  This meant that maybe... MAYBE she could eat.  Maybe some of it was digesting.  Maybe she didn't have to be on that fluid that could hurt her liver.  Maybe.  It was around that time that the kidney specialist elected to defer to the eventual transplant team.

On 7/19/2012, Kat and Josh had a conference with the doctors to determine what Neely's options were.  Two options were presented, palliative care or transplant.  There is little doubt which choice was right for this family.  Once this decision was articulated, the discussion turned to whether Neely could be a good candidate for a transplant, and the logistics involved with sending her for transplant consult.  It was a day that was just plain scary, but her care team was incredibly helpful.

Now, we're just hoping that she gets bigger and fights off infection.  As of 7/21/2012, Neely weighs 7lbs, 13ozs.  She is now able to eat 2 CCs of breast milk but is having trouble latching on to the bottle nipple.  She's still in the NICU and still looks like a completely normal, healthy baby.

Part 2: Kat

Kat's story starts with pregnancy.  Kat often remarked that Neely gave her a lot of problems.  A lot of kicking, a lot of moving... Kat just seemed to generally be in more pain than when she was pregnant with Laney.  It's something we look back on and wonder if Neely was in pain or in distress.

Two weeks before Kat was scheduled to give birth, we sat in the front row for Les Miserables.  That day, Kat was having a lot of pain, but she insisted on going.  They even went to the doctor to make sure everything was okay and that she could last through it.  She did.  From the opening song, Neely kicked up a storm.  I like to pretend she was dancing.

We never thought Kat would make it to two more weeks.  She just seemed miserable.  But she did make it.

On 6/14/2012 at noon, Kat was scheduled to have a c-section.  I had taken off that Thursday and Friday because I wanted to bask in the glory of our new family.  I took the parents and Laney to the hospital.  At Kat's request, Laney wore her "Big Sister" shirt.  Josh said that Kat was nervous.

I'm pretty sure that the first time I saw her after the delivery, we did 'bones' as it is our custom to be kind of weird.  She looked tired and in pain but overall fine.  After the doctor broke the news about Neely's transfer and surgery, Kat broke down.  I don't remember her exact words, but she vocalized (through tears) what we all were thinking.  She's just a baby.

With a lot of help from friends (and medicine), Kat cheered up.  Her friend Ilsa visited and Judy spent the night so Kat wouldn't be alone.  Josh called and said that Neely was taken out of the incubator, and no one there felt the need for any emergency surgery.  These seemed to be great signs.

Me and mom were at the hospital the next morning, and we sat with Kat during Neely's surgery.  Me and mom obviously couldn't really say or do anything, so we were just there as company.  This was probably the worst time for her.  After a couple hours, we called Josh to see if there was any news.  Josh did his best to relate what happened, but information was missing.  Kat eventually was able to speak with the doctor.  Throughout the day, there were rumblings about what to do with Kat.  Move her to the other hospital, keep her there, or discharge her very, very early (that day) so that she could be with Josh and Neely.  It changed over and over and over.  When I left to take mom home, the plan was to keep her there for the night and discharge her in the morning.  When me, mom, dad, and Laney returned, the plan was that she was going to be transferred.  So, Kat was transferred.  Things felt right even if it was just momentarily as the family got to be reunited.

Kat stayed at that hospital for a few days.  Kat was still in pain, and everyone thought that it was normal since she just had a c-section.  When these issues were brought up to the doctor, he brushed off the concerns as being normal. Kat was discharged on 6/18/2012, but she was still in pain and bleeding from her incision.  A day after Kat got home, she went back in for a check up.  Kat's doctor, concerned, opened Kat up at the clinic and found that there was a hematoma that was the largest they'd seen.  Kat was immediately sent to the ER (still open, mind you) and readmitted to South Austin Hospital.   It was the same room that she had been in the first day.  She was alone after they wheeled her into that room, room 215, and she wept, thinking about how different things had turned out from how they were supposed to go.  After the wound nurse checked out her c-section wound, it was determined that surgery was needed to thoroughly clean the wound (humanely, they said) and a "wound vac" would be placed.  Kat only spent a day in the hospital this time but was discharged with the wound vac and an order for home health to come every Monday, Wednesday and Friday.  The vac was kept in a little purse that had to carry everywhere.

Kat continued being in pain and the wound vac constantly malfunctioned, and I told her that I thought she should see her doctor.  One particularly bad night, they called the home health worker who suggested to turn the wound vac off if it didn't seem to be working.  The home health worker and her supervisor came the next day to assess the situation, and they said everything was fine.  My job has always made me wary of home health people as my experience with them is that they steal things, don't go to work, or don't do what they're supposed to do.  On 6/24/2012, the pain and complications became unbearable.  At the doctor's suggestion, Kat was readmitted to the hospital.  It was discovered that the wound had become infected.  When the doctors were told of home health's suggestion to turn the vac off, they said that they never should have done that.  Kat had to stay at the hospital until the Infectious Disease doctor cleared her to go home.  The wound vac was removed and she was referred to an outpatient Wound Care Clinic and Josh changes Kat's wound dressing.

It kind of felt like it helped bring Kat and Neely closer.  By this time, they both had two surgeries and holes in their tummies.  Since then, Kat has been doing physically better.  She'll have random pains every now and then, but it's nowhere near as common as those first few weeks.  Mentally, she's doing about as well as one can expect in this situation.  All she can really do is 'milk,' and the freezer is full of the stuff.

Part 3: Josh

Now, Josh's story doesn't have the same levels of constant hospitalization and sickness as Neely and Kat's does.  But in the face of seemingly unending waves of unfortunate moments and news, he's been the rock for all of us.

Josh's story starts two days before Kat gave birth.  On 6/12/2012, Josh's close friend Ted drowned in San Marcos.  He was clinically dead from anywhere between 4-6 minutes.  The month of "entirely too much time spent at the hospital" started then.  That night, I'd get texts from Kat saying that it didn't look good, and Ted wasn't responsive.  Ted didn't live to tell the tale only because he didn't remember it.  This dude woke up the next day and didn't remember any of it.  He stayed in the hospital but has made a miraculous recovery.

Josh played the familiar role of proud papa at Neely's birth.  He was nervous and excited as expected.  Upon the news about the first surgery, Josh and JD immediately followed the ambulance to St. David's Downtown.  That's actually one of my really proud moments.  In that first terrible situation, this family was like a well-oiled machine, and everyone knew where they had to be.  Since Neely would be in the NICU, they didn't have a room to sleep in.  They slept on some chairs until a security guard said that they couldn't do that.  They then found that they could lay down in the chapel.

Josh had the unenviable task of being the only parent there with Neely.  He had to try to process all the information the doctors were spouting out and then try to relate said information back to a very (but understandably) impatient Kat.  It really was a blessing when Kat was transferred.  Those two really are a better team together.  And, also, it gave Josh a place to sleep.

Josh spent Father's Day at the hospital.  I brought up Laney to visit Kat and Josh.  I remember Josh passed out for a bit.

Through every single hardship (including the two days without water at the house and Josh's mother's brief hospitalization), Josh has been the optimist.  He'd find the silver-lining in every situation.  He and Kat zombied their ways from doctors to doctors, hospitals to hospitals.  He has had to be the physically and mentally strong one.  It's rough to have to be the strong one... to be the one that says that everything will be alright with so much faith and conviction when you can't possibly be sure.  To be the brave face.  I think Kat once told me that he gets just as freaked out and panicked as she does... but he hides it for her.

I saw him break, even if it was just for a moment, the day that Neely had her big surgery and was found to have no nerve cells in her intestines.  After he got the bad news, my mom texted me that he was in bad shape and was crying.  When they got home, he sat on the couch in silence, and I saw tears coming down.  It was the first time I'd seen him that way, and I'll never forget how Kat comforted him.  It was a nice (but obviously unfortunate) role reversal.

Josh went back to work on 7/17/2012 but continues to be the rock of this family.

I hope that I haven't written this as though we're having a pity party.  (We don't really have time for one.)  It's important to me that yall see how much this family has gone through... yet we're still right here.  How we haven't broken.  Or lost hope or faith.  How, despite all this, we remain strong and with unwavering conviction that that kid is going to be okay.