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.

Adventures in Hip Dysplasia

Emma's collection of harness's, braces, and casts.
(wearing her rhino brace)

Hip Dysplasia occurs when the top of the femur is not properly located in the hip socket or where the hip socket is expected to develop. 

           When Emma was born she was the picture of health. A beautiful 6 lb 14 oz baby girl with big rosy red cheeks and lots of blonde fuzz. The doctor came in to do the rounds and inspect all the newborns. Everything looked great. The only problem he found with Emma was that her left hip clicked which indicated possible hip dysplasia, but he didn't seem too concerned and referred us to a pediatric orthopaedic surgeon just in case she needed a brace. I remember holding Emma and thinking, how unfair, my poor little baby with the hip problem. Little did we know, Emma had many other battles that were just beginning.

Pavlic Harness  - 3 weeks old

         So, when she was just 10 days old we brought her in to see the amazing Dr. Mary Beth Deering. We had no idea that she would soon become one of Emma's most important caregivers. They did an ultrasound of her hips and found that not only the left, but both hips were displaced. Dr. Deering prescribed a pavlic harness and Emma was to wear it ALL the time. It came up over both of her shoulders and went down to both of her feet. We watched as our perfect new baby was awkwardly stretched and positioned in this weird looking device. She could no longer be swaddled and breast-feeding would become increasingly difficult. I left that first appointment in denial and angry that Dr. Deering could expect us to put this unnatural thing on such a tiny baby. We wore it on her anyway and after 8 weeks there was no progress. "What a waste, we tortured our baby for nothing," I said to Justin, "this doctor has no idea what she's talking about." By this time Emma's vision had become a question, she was loosing weight, and spent her days and nights screaming in discomfort. It was becoming apparent that we were dealing with more than just hip dysplasia. So when Dr. Deering prescribed a rhino brace we politely smiled and nodded. We would do our best to wear it on her, but life with Emma had become really hard and it seemed appropriate to let the hip dysplasia take a back seat for the time being. We really did try to keep her in this brace as much as possible, but then one day when Emma was 3 months old, after a visit to her pediatrician, we were admitted into Montrose Memorial Hospital and then transferred to Denver Children's. After that it was as if the medical issues kept piling up. Just when we had come to terms with one scary possibility, another would be added to the list. I hate to admit it but the hip dysplasia was ignored for a couple of months.
         When things seemed to settle down a little bit we went back to Dr. Deering. The news was not good, Emma's hip sockets were still not formed and her high muscle tone was really adding to the problem. She wanted to do surgery and start giving her botox treatments to mellow out her tone. Emma was seven months old when she had this surgery. Dr. Deering cut her adductor muscles (inner thigh/groin) so that it would be easier to keep her legs "frogged". Then she was given her first round of botox and fitted with a cast. Emma recovered remarkably fast and began weekly physical therapy almost right away.

Justin and Emma after her most recent botox treatment.
(Still sleepy from the anesthesia)

         It turns out I was wrong. Dr. Deering DID know what she was talking about. In fact she's very good at what she does and has become one of our favorite people. She has taken a special interest in Emma and has helped us to treat her for all kinds of problems, from diaper rash to feeding issues, things that have nothing to do with orthopaedics. She has introduced us to other families who have children with special needs. She has set us up with specialists, therapists, and support clinics. Dr. Deering has a genuine concern for her patients and their families. She truly loves all the little people she works with and has become an essential part of our team. For now Emma's hips are looking good, the left is in socket, but her right is still a work in progress. She receives botox treatments once every 3 or 4 months in hopes that she will gain more control over her muscles. It has been helping tremendously. She still wears her rhino brace for about 16 hours a day.

Photos

Emma on her first birthday. 

Papa and Emma during our first long stay at The Children's Hospital in Denver

Emma and I going for a little stroll outside the hospital 

Enjoying her new tumble forms chair

Emma with her N.G. feeding tube (3 months old)

Shortly after her G-tube was placed. (5 months old)

Myself, Emma, and Justin in Denver children's hospital (7 months old)

Justin comforting Emma after a surgery

Close encounters with the 3rd kind. ;) ......(having an E.E.G, 11 months old)

Emma at St.Mary's hospital in Grand Junction, CO

.......sleep, yeah, right!

Sleep study

 Being cute in our garden

Botox treatments for muscle tone, St.Mary's Hospital

Emma and papa (nightly nebulizer treatment)

INTRO - A very special girl

      This is the story of our beautiful little girl. Her name is Emma! Lately a lot of people have been asking me about Emma. "Is she better?" or "what's actually wrong with her?" These are hard questions for me to answer. Usually I just smile and say "she's had a rough start, but is coming around nicely," or "she has a lot of health issues, but we're doing just fine". If I'm lucky Emma will give them one of her huge smiles and they leave feeling reassured and comfortable with my lack of detail. Then I quickly turn away before they see the tears welling up in my eyes.
       So, I decided to start a blog for friends and family who are curious or concerned. Hopefully this will help to clear some things up as well as keeping you all updated on little Emma's situation and progress.
       Let me just start by saying that Emma does not have any one specific diagnose or known reason for all of her struggles and it's not for a lack of trying that we haven't found anything. We have spent much of the last year in and out of hospitals. She has a big team of amazing doctors, specialists, and therapists that follow her. Emma has severe delays in her development. She is currently in therapy 3 times a week. She is primarily fed through a tube and is very tiny for her age. She has been under general anesthesia 7 times in her short 14 months of life. She also has hip dysplasia and an alternating muscle tone. Emma has been tested for every genetic and metabolic disorder you can think of. She has had M.R.I's of her brain, E.E.G's, E.K.G's, E.R.G's, you name it. Any major test or scan she's had it and all of them have come back "normal".  The doctors have prepared us that we may never know what's "wrong" with Emma. This is very frustrating and for a long time I found it unacceptable. I would think to myself, what if Emma is that kid that goes undiagnosed and then it ends up being too late to treat her. I wanted a reason for all of this and I still do, but now a days I'm dealing with it a little differently. Although I will continue to advocate for her, I have started to accept the fact that it just is what it is. Emma is who she is and I'm okay with that now. She is BEAUTIFUL, she is DETERMINED, she is STRONG, she is SPUNKY, she is SMART, she is a FASCINATING blend of BRILLIANCE with HANDICAPS................ she is truly a WONDER!