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).