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.