The Mysteries of Lillie Hines

As we’ve already described, Lillie is a kiddo with complex medical and developmental issues. And, for the most part, we’ve adapted to being her team captains pretty well. We have put our organizational, phone (so many calls!) and social skills (tip: ALWAYS be nice to nurses) into overdrive and have found a way to keep her appointments, therapies and tests almost straight. Then there are the mysteries…

Every month or so, a new issue seems to pop up out of the blue. Maybe it is something that has been lurking around, like frequent spitting up, but does not immediately make the ‘to do’ list. Or maybe it is sneaky and is mislabeled at first. Case in point – Lillie’s hair is duo-tone. No, really. Basically the right side of her head has golden blonde hair and the left side is a sweet light brown.

The first time we noticed this was about a year ago after a long hospital stay – a stay that included a continuous EEG test, which involves 24 rainbow-colored wires being attached to your baby’s head with adhesive. While Lillie did not seem to mind her special hat, the aesthetic aftermath was dramatic – delicate wisps of hair clumped and standing straight up covered in glue. Imagine something between rubber cement and Elmer’s.

After the test, mom and Aunt Suze temporarily transferred their medical stress into a “fix Lillie’s hair” obsession. They asked nurses, googled relentlessly and attacked the problem from all angles brandishing pads of hospital-supplied adhesive remover and Q-tips dipped in nail-polish remover. It was a delicate process, and after a lot of time and effort, it seemed to work.

Then, imagine mom’s surprise about a week later when she noticed the remedied hair was a little darker on one side. Looking closer…oh my…is it really? Two different colors?!

Time passed and we tried a few things to even things out – fresh lemon juice anyone? – and we encouraged her roots to pop up in her natural color the way you might talk to plants to make them grow. Then some members of Team Lillie started to wonder – was it really from the EEG goo removal? Or could this be another special Lillie trait related to her chromosomal anomaly? Mom, still guilt-ridden for “ruining my baby girl’s beautiful hair,” could not be convinced. Hours were spent pouring over newborn photos, squinting to find evidence of the first blonde-brunette appearance.

On this Father's Day, we should note dad’s reaction to all of this:  You want to do what to her hair?!  No, you may not shave it! Don’t worry Lil, daddy has your back.

Happy Father's Day

And yet, like many other far more important Lillie mysteries (e.g., her vision, future mobility, communication potential), only time will tell. So we do everything we can. We grow proud of her fashion-forward hair. We get her all the help she needs. We use our advanced sleuthing skills to solve all the puzzles we can. We work on staying in the moment. And mostly, we love her while we wait for her to reveal the answers of all her mysteries to us in her own time.

What is Old is New Again

There are a few new things and activities in Lillie World now.  We’ve added a large piece of furniture and brought back some toys she couldn’t use before.

The new furniture is a big bean bag chair.  I know, I know, it’s a bean bag chair.  But this is not your childhood bean bag chair.  We got it from a company that makes bean bag furniture (couches, love seats, etc.).  We wanted something for a second person to sit on in Lillie’s room during our frequent “team meetings.” There is only one chair in there and the floor definitely does not pass the comfort test.  The new chair has what seems like buckwheat at the base – yes, there’s a top and bottom to it – and pieces of comfortable foam on the top.  It has a brown, ultra-suede cover to put it in.  We like it, although Lillie isn’t really sure what to think.  She has a hard time moving in it, but it makes a great picture.

We also brought back the bouncy chair and activity center that Lillie couldn’t use until now.  What is old, is new again.  Lillie has some curvature in her spine and  it can cause balance issues.  She also had a hard time holding herself up for any prolonged period of time.

Thanks to the tireless efforts of Team Lillie, she can now hold herself up for a while and actually use both of the toys.  She needs a little support for her ankles while in these.  We were told not to immobilize her ankles but, give her a little help.  Her mom found her pink Chuck Taylor’s to use while playing.  I’m not sure she could use them to learn to walk in but, they’re perfect for this.

More stuff for her to play with and exercise in. Lots of progress to report on all fronts.

Oh, and her palate is healing very well.  We watch Lillie play with the roof of her mouth with her tongue.  I can’t imagine what it must be like to have that cleft closed, it must be a little weird. 

Dad is home from work the first part of the week and has Lillie on his own for most of that. Grandma Bette is out of town until Tuesday night and mom has to travel some for work.  Looking forward to a bunch of Lillie time this week.

Lillie World

Lillie World is what we have taken to calling her room – she is growing up so quickly it does not even feel like a nursery anymore. Logically, we know it is just a small bedroom in a house we are renting for a couple of years. But it has become so much more than that; it is the heart of our home.

Practically speaking, it is where we almost always feed her (5-times a day) through her g-tube, where she sleeps, where her therapists stretch her out on the floor and try new exercises, where we play and often where Team Lillie huddles singing her favorite songs when she is having a tough time. “Head, Shoulders, Knees and Toes” and “Yellow Submarine” are two of her favorites.

It is filled to the brim with a comical number of toys, books, and family keepsakes – including pictures by grandma Juli and some of her mom and dad’s favorite childhood goodies. Not to mention a closet embarrassingly full of adorable summer attire and comfy jammies. (Some might say mom and grandma Bette have shopping ‘issues.’)  Almost all the toys have names: Dell, Davy, Blue, Monroe, Sketti, Q-Bert and more.

With no discernible design theme, all bright colors are welcome – especially hot pink. Looking around, there is a slightly higher proportion of owls and flowers than might occur naturally, but not quite enough to feel planned. The extra large yellow rocking chair that sits across from the crib is a little worn and almost always occupied. You can imagine, then, that it is a little busy in here. But somehow, it all just works.

This is also the place we anxiously set-up when she spent 17-days in NICU, asking just that we got the chance to bring her home. Where we have seen her make slow, steady progress and where we have consoled her, and ourselves, when times have been tough. And it is where we love to bring her back after adventures in the hospital, doctor visits and trips to the duck pond.

So, here is to Lillie World - the kookiest, craziest, best place we know.

2nd Annual Memorial Day Weekend at Dell

Over Memorial Day 2011, we were at the end of a 17-day stay at Dell Children’s Hospital in Austin.  Lillie had been having some apnea episodes that no one could figure out.  During that stay, we ran multiple tests and had a gastric feeding tube or “button” surgically placed. 

One of the tests run was a swallow study.  Lillie was aspirating while feeding which is no good.  Time for a g-tube and only feeding with a Haberman bottle.  Milk flow through the nipple of the Haberman can adjusted by turning the bottle.  Lillie would only be allowed to use the bottle for a short time and the rest of her food given by tube.

Eventually, we would find out the apnea episodes were from seizure activity. 

Fast forward to Memorial Day 2012.

This stay was planned.  As we wrote last time, Lillie went in for her palate repair last week.  Basically, the surgeon went in and used tissue from the roof of Lillie’s mouth to cover the cleft and create a complete palate. 

Space Koalas

She went in on the morning of Wednesday the 23^rd.  She got a little upset in the waiting room, we’re not sure what caused it.  Probably could feel the tension from mom, dad and two grandmas and kind of knew something was up.  No worries, she slept when we got back to the consultation room where they ask you about medications, time of her last feeding and get her into a pint-sized hospital gown – in this case, Space Koalas. We also met all the doctors, nurses and anesthesiologists involved and the surgeon came by to answer any questions we had before handing her over.  Yes, she slept through all that.  She was still asleep when we gave her to the nurse to go back to surgery.  A quick kiss and an “I love you” from mom and dad and off she went.  Surgery was supposed to last about 3 hours.

Three hours is not too long for a surgery, really.  As many of you know, it is interminable when it’s your kiddo.  The cafeteria food doesn’t do much to help, though it has gotten better.  Four days of junk food and Starbucks.  Good idea in theory, not so good in reality.

Anyway, Lillie came through with flying colors.  The gap in her palate was pretty wide so they had to use a little more material from the roof of her mouth and do a little more stretching and relaxing of muscles to make it work.  More discomfort for her – the first 24-hours were pretty awful – but thankfully Tylenol with codeine and morphine work. 

Oh, in case you’re wondering, the surgeon was great.  He was having a good surgery day, was all smiles and everything you want from a surgeon.  He explained everything, had a great bedside manner and sense of humor.  We’ll see him again in 6-weeks for a checkup.  Maybe we were a little harsh on him the first time.

We had to stay a little longer than planned but got to go home on Saturday.  Lillie had some tummy trouble that caused her to spit up a few times on Thursday.  We had to reduce the amount and speed of her feeds while her stomach got back up to speed.  Apparently, that’s a pretty common reaction to anesthesia.

Most importantly, Lillie is back to her laughing, happy self.  She’s not allowed to put anything in her mouth (including fingers) so she has to wear no-no’s.  Basically, they’re padded braces that don’t let her bend her elbows – she hates  wearing them almost as much as we hate having to put them on her.

Not planning a third annual trip to Dell. As much as we love successful surgeries, morphine and Space Koalas, next year we're shooting for family BBQs, beer and trips to the duck pond.

A Big Week

This is a big week for our family. Lillie is scheduled to have her cleft palate surgically repaired on Wednesday. It is the second of probably six surgeries she will have to correct her cleft lip and palate, which is categorized as unilateral (one side) and complete (front to back of the roof of mouth). We have been looking forward to this date as much as you can look forward to something like this.

Luckily, the same plastic surgeon that repaired her cleft lip last August will be doing this procedure, so we have confidence in his skill and expertise. We are still preparing for his less than perky bed-side manner. The man is great at what he does but, warm and fuzzy he’s not. This week he will delicately close the soft palate in order to allow the roof of her mouth to perform its normal functions: preventing food and liquids from going up into the nose; allowing comfortable, natural nose breathing; and encouraging correct tongue habits for speaking, breathing and swallowing.

Of course, we are looking forward to all of this for her and hope it will encourage her development, but it’s also just plain scary to know your baby girl has to have surgery in a few days. Even when you do know the doctor, what he’s going to do and the hospital – down to the best snacks at the gift shop (dark chocolate covered almonds) – the butterflies still take up temporary residence in your stomach.

To make ourselves feel a little better, we make lists (mom) and plan to leave the house extra early to get there on time even with the worst traffic (dad) and call in reinforcements (grandmas). And there we’ll be Wednesday morning, nervously waiting for 2-3 hours, playing Words with Friends on our iPads, eating half way decent cafeteria food and making stupid jokes to keep each other smiling. All while Lillie is the focus of an A-team of medical professionals.

And, if we’re lucky, that is when the hard part really starts – a night or two in the hospital and weeks of recovery when she’ll look a little like a vampire (drooly baby + healing mouth) and will not understand why her arms are restricted with so called “no-no’s” to prevent her from putting her hands (or anything else) in her mouth.

Needless to say, happy thoughts and prayers are welcome. We’ll try to update this post as we go through the week to let everyone know how our fierce princess and not-so-fierce parents are handling things.

What A Difference A Year Makes

This is the second Mother’s Day we have had Lillie and the first where we didn’t have to consider going to the hospital with her.  Let me explain.

Mother's Day 2011

Mother's Day 2011, Lillie is only a couple of months old.  Very small (about five pounds) and we are very new at being parents, let alone experienced with Lillie’s many conditions. 

We take Lillie out back to take some pictures with mommy – first Mother’s Day and all.   We get her a little dressed up and sit her in mom’s lap.  Of course, Lillie spits up most of a feed.  This is the first time she has spit up.  It is all over mommy and Lillie.  Not exactly portrait material.

I had a soccer game (yes, the league has learned their lesson and they didn’t have games on Mother’s Day this season) and left shortly after that.  When I get home, Carrie tells me Lillie went rigid and turned blue very briefly while I was out.  It only happened once and we have never seen it before so we figure we will watch for anything else strange that day. 

A few days later, Lillie goes rigid and turns blue again.  We call one of Carrie’s sisters, who is (kismet?) a pediatrician.  She tells us to take her to a doctor right away so we start to get her stuff together.  Before we leave, Lillie does it again.

Okay, now we are completely freaked out.  We don’t have a clue what’s going on so we are in a full blown panic.  What do we do if she does it in the car?  Does this have anything to do with her chromosomes?  That CPR video they show you at the hospital before you go home is not adequate for what we are feeling.  Breathe.  Get her in the car and go.

We stop at Lillie’s pediatrician’s office because it’s very close to home.  We run in and grab a nurse.  They take her vitals and ask us what has been happening.  They look worried but tell us she looks fine and to take her to Dell Children’s Hospital ER to be sure.  It will be faster to take her ourselves than wait for an ambulance.  Back in the car we go.

No problems on the way there.  Whew!

Then we arrive and start to sign her in.  Rigid, eyes closed, very blue.  That did it.  We get rushed in and Lillie gets five nurses and two doctors in the space of 30-seconds.  Thus begins a 17-day stay in the hospital while they run tests – practically around the clock.  Part of this is a study to see how she swallows (difficult with a cleft lip and palate) and they find she is aspirating liquids and decide she needs surgery to place a gastronomy-tube which we will use to give her most of her nutrition.  At the end of the visit, we are told the cause of her blue episodes was most likely apnea caused by reflux. 

Mother's Day 2012

Well, now we know it was not apnea.  It turns out (we find out during a July hospital stay) Lillie probably had an infection and while she did not get a fever, it caused her to have seizures.  At that age, her seizures presented themselves by causing her to go rigid, stop breathing and turn a scary shade of blue.

In case you’re wondering, Lillie is doing well now with no seizures since infantile spasms (another post) the end of last year and we are having a wonderful Mother’s Day.  My advice?  Take a minute today, and every day, to give the kids (and their moms) an extra hug and kiss.   

All My Specialists

Dealing with Lillie’s conditions can seem somewhat daunting when you stop to think about all of them at the same time. Thankfully, we have team Lillie.

As we introduced ourselves in the “About me” section of this blog we included all family, friends, doctors and therapists in Team Lillie. Without the contributions from everyone, I don’t know how we would keep up. For this post, we would like to focus on the doctors and therapists - Lillie’s many friends.

All told, Lillie has 14 doctors that are following her progress. We are about to add a 15^th when Endocrinology comes on board (more on that in a later post). We have had one doctor tell us we don’t need to see him unless another one finds a problem with her kidneys. He’s on injured reserve from the team, if you will.

Team Lillie consists of the following doctors/specialists:

Pediatrician, Cardiologist, Dentist, ENT, Gastroenterologist, Geneticist, Nephrologist (injured reserve), Neurologist, Nutritionist, Ophthalmologist, Orthodontist, Orthopedist, Plastic Surgeon for cleft lip and palate, G-Tube Surgeon and Urologist.

Team Lillie also gets a lot of points from the bench:

Occupational Therapy, Physical Therapy, Speech Therapy, and Cleft Lip and Palate coordinator and Social Work.

So many people working to help Lillie can get a bit confusing. It is only through Carrie’s (mom) love of spreadsheets that we can keep track of them all. Carrie keeps an updated list of doctors, their specialties and when the next appointment is. It also has a second page that lists Lillie’s conditions, medications, phone numbers and emergency contacts. We bring a copy of the sheet to doctor visits to hand to the nurse or doctor. It keeps us from having to list everything on forms and answer questions every time we go.

In case you’re wondering, no, Rob (dad, me) is not the organized one. I would be lost without the spreadsheet and my wife but, don’t tell her I said it.

For our schedules, what does this mean? Lillie has 5 in-home visits per week from OT, PT and ST. Most weeks, she has 2 appointments in doctor’s offices for follow-ups, ultrasounds and other tests.

The good news for us is that all the doctors we work with are connected to or are at Dell Children’s hospital, here in Austin. While we have had to change one or two doctors to get where we are, we are very happy with the team we have helped bring together.

Moving forward, we’ll try to keep everyone up to date as we run the gauntlet of doctors. Up this week: Cardiologist (check up on aortic stenosis) and Plastic Surgeon (pre-op visit for upcoming cleft lip and palate repair).