Wednesday, January 18, 2012

To Eat or Not To Eat...

Before Elise was born, and after many months of seeing her obvious brain injury crystal clear on an ultrasound, I was told what I could expect. I listened to all of the concerned and educated words that came from the mouths of doctors and specialists. I didn’t necessarily hear them, though. My mind was in a smothering fog, swirling about with the notion that I would soon give birth to a baby who would grow, but stay a baby. We had prayed our guts out. Some for complete healing, and others for acceptance and help from the Lord for what awaited us. With all of the more challenging and devastating news that we received, (possible deafness, blindness, mental retardation, cerebral palsy, death), there was one tidbit that was pretty well glossed over. Just a quick note from the doctor during one of our many question and answer sessions in his office: “Don’t expect her to even have a suck reflex. No nursing, no pacifier, no bottles, no thumb sucking, no drinking, no, no, no….there’s no way.”

So... fast forward a few months and ask me how it felt for Miss Elise to immediately begin nursing right there in the delivery room!

To spare those reading this, I will not show any big breastfeeding pics that I have. This one was taken in the delivery room soon after she was born. Yes, I am being watched by my mom, my dad, my husband, and 2-year-old. Check out the look on my face when I notice that my dad is VIDEOTAPING! I’m sure all was covered, but still…

Although it was incredibly hard to nurse her, nurse her I did! My memories of breast feeding Elise aren’t tucked away in that normal spot that women have in their “mommy brain”. Although I did love nursing her as much as my other babies because of the closeness and all of that special junk us nursing moms talk about, what I remember most is lots of struggling and uneasiness. For example, the awkward feeling of sitting on an airplane on our way to a new therapy, trying my best to nurse her (while acting like I wasn’t nursing her) in one of those seats that literally puts you face to face with passengers seated across from you. I also remember trying to time her feeding sessions in between all of her appointments and therapy visits, which wasn't an easy task! She needed more help than the average baby because of her issues, but we were all definitely impressed with her effort. Not surprisingly, after a few months, it was revealed through a suck/swallow study that Elise was aspirating the breast milk, and would need to have all liquids thickened from that point on to avoid some pretty serious complications.

So, goodbye to my nursing bras, and pretty pink Boppy pillow…. and hello to bottles, formula, and Simply Thick (thickener for liquids). Amazingly, she immediately took to the bottle, which brought another deep, relieving sigh from me, as I desperately wanted her to drink like a “normal baby”. We had to thicken to honey consistency, (you fellow aspiration mamas know what I’m talking about!), and it took her a bit longer than average to drink the bottle, but she did it!

Lane helping out with his baby sister by giving her a bottle.

GiGi giving Elise her bottle. We would put her hands on it in an attempt to help her one day hold it herself. She never did achieve that skill.

Elise loved her bottle for many years past babyhood. Jackie (in-home caregiver) eventually had to sit Elise on the stool in front of the chair to feed her the bottle. Whatever it takes!

Elise was so good with her bottle, that even her 88-year-old great-grandma could feed her.

OK, ok...I know this is against “bottle feeding etiquette”. In my defense, it looks like she was in a Big Lots cart, which meant I had no time to stop and hold the bottle myself. There was major deal shopping to do!

Life was good. Elise was drinking a bottle, and had even started eating thickened homemade baby food. I videotaped her first “solid meal” like a proud mom with such gratification that SOMETHING actually felt typical when it came to her development. I was kept on edge, however, by the knowledge that most kids around the age of 3 or 4 naturally stop sucking the bottle nipple. The feeding therapist assured us that the bottle could not last forever, and we all knew that Elise was not advanced enough to use a sippy cup or straw for all the liquids she needed. Unfortunately, after several years of drinking her bottle, Elise did eventually start to drink less and less, to the point of us having to occasionally feed her with a syringe in her mouth. Very

counterproductive! That is the point at which we were introduced to the idea of a G-tube to feed her through a button surgically placed in her stomach and accessible from the outside. A G-tube, to me, meant failure. All of the wearied phone calls to therapists and doctors. The long eating sessions and persistent feeding therapies -- down the drain. It took me some time, but I finally comprehended that getting a g-tube for Elise wasn’t necessarily about wasted time and lost expectations. It was simply a case of pride. Whenever anyone asked about Elise or got the rundown on all that was wrong with her, I could always pull one little gem out of my bag. Elise can drink! It seems so ridiculous to me now, but my feelings at that time were very real and extremely strong. I held onto this skill like it was my own personal self-achievement. It was even something that most all kids like her definitely cannot do. It was as if we were folding our hand in this emotional game of pride -- total and complete defeat. I was shocked by the self-realization that I was completely wrapped up in her drinking liquids more for me than for her. I don’t remember if I prayed about it or if someone gave me a swift kick in the butt (probably the latter), but I eventually put on my “responsible mama” hat, came to my senses, and scheduled the surgery.

I’m so glad to have thought to get one last shot of her perfect little tummy. I don’t even remember her looking this way!

Right out of surgery. Pretty gross, but we got used to it. The long tube eventually came out and only a button remains. We attach a long tube to it when it is time to give her any liquids.

Everyone became very proficient at using the G-tube. Even Gigi, Popi, and PawPaw!

I left the room while Lane was helping me tape up the gauze around her button. This is what I came back to. He put way too much tape on her, and if you look closely, you’ll see that she even has tape on her forehead! Lane was always a good helper.

Elise receiving Pediasure before bed last year. (Ignore the paint color samples on the wall behind her!)

What I am most impressed with when it comes to Elise and what we were told she would never be able to do, is the fact that she has retained her talent of eating pureed food for all of these years. She is a pro at eating what I call her “mush”, and opens her mouth like a baby bird for each bite. She eats anything we eat, just pureed. Yes, what she eats each day looks quite gross and disgusting. Picture a meal of roast, potatoes, carrots, broccoli, and french bread all put into a blender and served up in a bowl! I remember when Elise was a baby and we were in Canada for a specific physical therapy treatment. The mother of a child several years older than Elise was feeding her daughter the same mushy looking gruel that I spoon into Elise’s eager mouth now. At the time, I was completely grossed out and couldn’t watch for long. It’s funny how time and experiences will change your attitude about something that you couldn’t imagine doing yourself. I now LOVE feeding Elise, much in the same way this mother fed her daughter so many years ago.

Elise’s first solid meal of baby rice. She ate it all!

Food on face... Full Tummy... Happy girl!

We’ve come a long way, baby!

No, we’ll never sit down and enjoy a steak dinner together. I will, though, have the satisfaction of spoon feeding her orange and grey mush for the rest of her life, holding onto the knowledge that I am giving her something that brings her joy and wakes up one of her few working senses. Pride is no longer an issue when it comes to Elise and how she does or doesn’t eat and drink. I have found other things to hang my hat on -- like the fact that she looks gorgeous in a new dress, or that she has an infectious laugh that so many like her never seem to develop.

So, what I guess I take away from all of this is:

"To eat or not to eat?" is not the question after all. The main question I needed to ask myself was, “Had I been deceived by my own pride?” My answer was a resounding “YES!” It was a good lesson to learn in my world of special needs with Elise, where pride doesn’t come around too often. I’m now more careful to make sure that my decisions concerning Elise, actually concern Elise and not just my skewed sense of achievement.

(And, by the way, we absolutely couldn’t live without the G-tube. There is now no struggle or anxiety around getting liquids and medication into Elise. It is easy, convenient, and a MUST HAVE!)

We have always given Elise tastes of the icing on her cake. As she grew older, she began actually eating parts of the cake or cupcakes with lots of supervision!

Elise began something called VitalStim therapy with an Occupational Therapist when she was only a few years old. This therapy uses several little electrodes that are placed around her face and throat area to help accelerate strengthening and help the brain remap the swallow function. I believe it did wonders for Elise’s swallow and ability to eat.

We always worked with Elise to drink out of a sippy cup. She worked hard at it, and got to where she could take several sips at a time, but could never quite get the hang of it for it to be very useful.

Elise eating “therapy” food. With help, she can eat graham crackers with peanut butter, little turkey hotdogs, cheese puffs, bananas, pumpkin pie, and other regular types of food. We only give her these foods as part of therapy or when we want her to work a little harder!

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