Waiting for Shoes

It has been too long since we've updated you all on how our darling girl has been doing. When I really think about what has been keeping us from posting, it seems to me that we have been waiting for more shoes – not just the ‘other’ shoe (we’ve learned there is an endless supply) to drop.

Over the last nineteen months, we’ve faced so much and stretched our lives into Gumby shapes so often, that a short period of what you might consider normal is actually kind of…freaky. Don’t get me wrong though – we are definitely willing and hoping to get used to it.

So, here is a rundown of the things that have been keeping us busy but not crazy lately…

·         Lillie is getting tall. Our former preemie princess is catching up on her growth charts nicely and seems to have gotten her long legs from her mom. She is still working on her physical development, so she doesn’t walk yet, but when we help her stand we are all amazed at how big she is getting.

·         Her vision is improving. We just had an appointment with the ophthalmologist a few days ago and he is very happy with the progress she is making with tracking and seeing overall. At this point, he believes she is near-sighted and will need glasses someday but her optic disc hypoplasia will not cause her to have profound vision loss. The way he explained it is that the information should get from her eyes to her brain, so it will depend on how she develops neurologically to determine how much she can recognize visually in the long term.

·         She’s eating and drinking more. After her last hospitalization, Lillie started taking a new medicine to help prevent vomiting episodes and it also causes increased appetite in many kids. We are pretty sure Lillie is one of them. While her main source of nutrition is still a toddler formula through her g-tube, she is now eating 3-4 ounces of purees every day. And she loves drinking water so much we have a hard time pacing it so she doesn’t take more than she can handle.

·         We love her new clinic. We were truly blessed to have a wonderful pediatrician on team Lillie for her first year and a half, but it has also been wonderful to be a part of the new pediatric clinic that is designed to care for kids with complex medical issues like Lillie. She has been sick a few times in the last couple of months, and they are always available to work through it with us over the phone so we don’t have to bring her into the office or even the hospital in the middle of a vomiting episode, for example. It makes a big difference.

·         Lillie likes to kiss! Best of all, one night recently Lillie decided to kiss her daddy back when he was busy lavishing her with attention. Now she is turning into a pro – when she’s in the mood, of course. It’s hard to overstate how important this simple act of reciprocating affection is when you don’t know if your baby girl will ever be able to say “I love you” back.

 

Including a picture here so you can all see how great she is doing and how big she is getting. Our special princess makes us very happy.

 

 

 

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.

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.