Happy New Year!

        2011 has been filled with so many life changing lessons, I don't even know where to start. Over the course of last year an illusive truth has slowly been revealed to us................... IT IS O.K...... Emma is o.k...... we will survive.............. maybe even thrive. It has taken a lot for us to finally begin to realize this and there are still many days when its hard to see it as the truth. The past year has been filled with nights of worry blurring into days of endless responsibility. There have been many tears held back and just as many cried silently into the pillow at night. I am no longer the carefree, young woman that I once was and that's o.k. Emma has transformed me into a different person, I like to think, a stronger person......maybe even a deeper person.  If I didn't know better I would say that she is strategically molding me into the woman that it will take to be her momma.
           
        
           In 2011, amidst all the madness, we welcomed a baby boy. His name is Isaac and he is beautiful and amazing! I can't wait to watch them grow together and to tell Isaac how lucky he is to have such a special big sis...........maybe he already knows.

           In 2012, I hope that Emma finds her world to be beautiful, I hope that she continues to smile at everything and anything, I hope that she starts to feel more comfortable in her special little body. I hope that she thinks life is fun and that she never stops practicing her belly laugh. Most of all I hope that both Emma and Isaac know that they are loved on a deeper level than I ever knew possible.

Bon Appetit

                                                           

Feeding Emma....Oh, where to begin, it takes a crash course in nursing to feed her. When Emma was just a couple of weeks old it became obvious that food was not her friend. She would loose an entire meal within minutes of finishing and she seemed to be progressively having a harder time latching on and swallowing. She would often choke and seemed to forget how to suck once she was latched on.

Emma with the N.G. tube

At 6 weeks old the doctor diagnosed her with GERD (gastroesophageal reflux disease) and put her on zantac. It didn't change a thing. She began loosing weight and at 3 months old she weighed just 9 lbs 2 oz. I went on the "cardboard diet", cutting out wheat, gluten, dairy, sugars, citrus and soy. Nothing seemed to help. We were sent to Denver Children's hospital where they gave her an N.G. (nasal-gastric) feeding tube. I was still determined to keep my baby off of formula so I started pumping my breast milk for her. We would use a fortifier to increase the calories and then feed it to her through the tube.  I hated the N.G. tube. They trained us how to put it back in when it came out...and it came out a lot. We had to push it through one of her nostrils and then slowly feed it down the back of her throat and into to her tummy. As you can imagine this was incredibly uncomfortable for her, she hated it. Then to make sure the tube was in the right spot we'd suck out a little fluid and test the PH level to verify that it was stomach acid. Sometimes it would go down the wrong "pipe" and end up in her lungs. The only way you knew this had happened was when she would start to turn blue. It was scary at first, but before long we became pros. Emma responded to this and seemed to do well for a few weeks, but it didn't last long and before we knew it we were back in the hospital.

Emma and her "button"

           When she was 5 months old our fears were confirmed.  Emma is struggling from what is most likely a neuro-muscular disorder and it contributes to her inability to suck and swallow. Her feeding issues were not going to go away. We had to make some difficult decisions about what steps to take next. Her doctor recommended a fundoplication (a surgery that wraps the upper part of the stomach around the bottom of the esophagus and stitches it in place) to help control the reflux. During that surgery her G-tube (gastrostomy) was placed and we could finally get rid of the N.G. tube. Her G-Tube goes right through the wall of her tummy and into her stomach. We call it her "button."  It took 3-4 months for her button to properly heal, but now a days she doesn't even notice it except for when it is accidentally pulled out of her. This happens every couple of months. The first time it was pulled out we were camping and it was the middle of the night. Emma had been up half the night as usual and Justin was trying to calm her in the tent when he accidentally snagged her button pulling the whole thing out. When this happens you are left with a gaping hole into her stomach and the contents, stomach acid and all, begins pouring or even spraying out of her. Emma began screaming because this is not a comfortable thing to happen. I woke up and immediately went from 0 to 60.  Luckily I had brought a spare button and after frantically scrambling through the tent for a flashlight we were able to reinsert it.  Now we look back at this and laugh at how dramatic it all seemed.

Super food = Super star

            She is followed by a dietitian and has been put on a strict feeding schedule. During the day she eats every 3 hours. These are called bolus feedings. At night she is on a slow drip that pumps 12 oz into her over the course of 8 hours. She has 2 main types of food. The first is a prescription medical formula called "elecare". She gets elecare for 2 of her bolus feedings and her night drip. For the other 3 bolus feedings I have started to give her a blenderized food that I make here at home. I started making this a few months back after reading the ingredients of the formula. The first ingredient is 55% corn syrup solids! I decided I could make something healthier myself and Emma has shown some huge improvements since I started. I began doing research and finding the highest calorie "super foods" I could. I use all kinds of ingredients. Goats milk, flax seed oil, lentils, kale, yogurt, peanut butter, oatmeal, spinach, brown rice, quinoa, beans and whatever other veggies and fruit I happen to have in the house. All of the food that I make her is at least 38 calories an ounce and her formula is only 26 so I figure it must be good, right? When Emma turned 1 year old she weighed 15 lbs 3 oz. It seemed like such an accomplishment to hit that 15 lb mark. Now a days I'm waiting for the 20 lb mark. It's going to be a big celebration the day we hit 20 lbs. Now for a bit of bragging. If there is one thing that I am particularly proud of in raising Emma it is that I never gave

This is the finished product. I make it twice a week.

up on breast feeding. Through all different formulas, feeding tubes and adaptive bottles I would still try to nurse her every day and it finally paid off. When Emma was about 7 months old she started nursing well and really enjoying it. It was such a feeling of accomplishment, I have no words to describe it. It has served her so well in gaining some control over the muscles in her mouth and throat and we think it is part of the reason that she can kind of spoon feed today. I have since learned that it is extremely rare for babies with Emma's types of disabilities to breast feed, so for this reason I am especially proud.
        Today Emma weighs 16 lbs 4 oz. She eats both by mouth and tube and still breast feeds once a day before bed. She sees a speech pathologist every other week to help with spoon feeding. Our goal is to one day get her eating proper food all on her own.