Emma turns 2.

This is a post that I've been thinking about for the last couple of weeks. I just didn't know where to start on this one and like most things I have left it to the very last minute. Writing this post means dealing all kinds of old emotions, as I reflect back on the past 2 years. Today was Emma's 2nd birthday. We didn't have a party, we're not quite ready for that yet, mostly for selfish reasons. I know that Emma would've enjoyed getting lots of attention and watching the other kids run around, but for me, it's still really hard to see kids her age playing, talking, and doing all the things that the average 2 year old does. I can't help but wonder what she would look like running and jumping or what she would sound like if she too, put together silly little sentences. This is a dangerous way of thinking and I try to not do it too often, but there are some days when I simply can't help myself. Today was one of them.
Instead Emma and I went to the hot springs pool in Ouray and enjoyed a beautiful day of swimming. It was perfect, she LOVES the water! It was just the two of us as Justin was at work and Isaac was at the sitters. It was so much fun and I think she had a great time. After that we went to the park and she swang and swang and swang some more. Another one of her favorite things. Later this evening Justin helped Emma blow out her candles and then she enjoyed some tasty banana cream pudding. She got a Rock n Roll Elmo for her birthday. She's becoming quite an Elmo fan and loves this new toy. Tomorrow we are heading to Justin's dads house to continue the celebrations, it should be fun.

Two years ago today we sat in the hospital with a beautiful baby girl. We were all exhausted from laboring all night and couldn't wait to start our new life together. Although, like most new parents I was apprehensive about leaving the security of the hospital and I wished that they were sending a nurse home with us. We were only home for about 4 hours when Emma stopped breathing for the first time. It was every parents worst nightmare and I couldn't believe it was happening. From day one this little girl has had to fight for what most of us do without ever thinking about.
She was blue and Justin immediately began CPR while I called 911. The first to arrive was a sweaty, overweight sheriff. He came sprinting into the house with all the fear and concern of a parent. I'll bet he was a father. He whipped Emma up and began checking her out. She had started to give us some gurgly breaths at this point and looked less blue. Within minutes our driveway was full of emergency vehicles and staff, even a firetruck had arrived. I have to give a shout out to the amazing response that we had that day from the Telluride EMT's and Fire dept, (most of which are volunteers). We don't live in a place that is super easy to access and they were all there within 5 minutes of our call. It was unbelievable. After an hour and half ambulance ride we were back at the hospital and we stayed the night. The pediatrician wrote it off as mucus from birth and after showing us a quick video on infant CPR they sent us on our way first thing in the morning.
              .......and I thought I was nervous about going home the day before. ;-)

Here we are, 2 years later and what feels like a hundred years wiser. Things are much more relaxed around here now a days. I think Isaac has played a big role in that. He is such a good baby and to be honest he hasn't really made our situation much harder, but I think having him has made our hearts a little heavier for Emma. She was our first after all and we didn't know any different. It was probably better that way. When I see how Isaac hits each and every milestone with ease, it really puts Emma's situation into a perspective that we hadn't quite realized before. Today I spent a lot of time thinking about things that I might try to do differently (better) for Emma. The one that keeps coming to mind is to live in the moment with her. I feel like I have spent much of her life so consumed by my fears of the future that I may be missing out on all the fun we could be having right now. So from now on I am committed to putting these fears in the back of my mind instead of the front. I will try to enjoy each and every moment rather than worrying about what's to come.





My beautiful birthday girl is now sound asleep, which is my cue to try and do the same. I hope she had a wonderful birthday. I hope in her 3rd year of life she discovers how amazing she is and that she feels loved and confident and continues to laugh every day. Swing on Emma, swing on.

Mothers day

               "Of all the rights of women, the greatest is to be a mother"  -Lin Yutang

When I woke up this morning and looked in the bathroom mirror I saw a different woman than a couple of years prior and it isn't just the shocking dark circles under my eyes. Today I sit and try to imagine my life without these two beautiful babies and what I keep coming up with are empty, self-absorbed dreams. I could travel, I could become a better skier, I could go out at night with friends. Dreams that no longer exist, because EVERYTHING changes when you have a child. Now a days my dreams are all for them, I dream of the day that Isaac learns to Ski and the day that Emma learns to walk. I dream of school plays and Halloween costumes. I can hardly wait to hear the sweet sound of one of them saying mama, just the mere thought of it brings tears to my eyes.

Isaac

Today I think back to the moment that I met each of them. That perfect moment when you are holding your new child and nothing else matters. It is the definition of bliss, more than any other natural or artificial high that exists. Your baby looks towards you, and in an instant you are madly in love with this tiny stranger and it's the kind of love that is so strong it actually hurts a little. It is indescribable to those who have not experienced it and I remember wondering why people didn't make a bigger deal out of this. Your laughing, your crying, the pain immediately subsides as if it was never there and you suddenly have more energy than you know what to do with. It's only a moment and then all the worries and responsibilities of parenthood begin to kick in. "Does the baby weigh enough?"... "Is the baby latching properly?"... "Do you want us to give her this shot?"... "Do you want him to be circumcised?"... and on and on, but before all that you get a quick moment in time when the world stands still and it is just you and your perfect little person. It is without a doubt the most pure and genuine feeling I have ever experienced.

Emma

Most people think that once a woman has a child she is a mother and of course in the literal sense that is true, but for me there are definitive moments when it suddenly hits me..... "I am a mother!" Recently this happened when we were at a restaurant and I looked over to see the man sitting at the table next to us with a look of utter disgust as I, without hesitation, reached over and caught Isaac's spit up in my hand. For a split second I was a little embarrassed, but then Isaac piped in with a big goofy smile, smacking the table and squealing. I was instantly charmed by his antics and nothing else mattered..... I am a mother! The first time it happened with Emma she was 3 months old and we were at the Children's Hospital. They had been trying to place a catheter for about 15 minutes with no success. Emma was screaming in pain and I was full of helpless, angry feelings. Tears were streaming uncontrollably down my cheeks as I stood at the head of the table trying to comfort her and I recall wishing and praying harder than I ever had to give her some relief. At one point I wondered if I was doing it aloud. She was looking up at me, begging me with her eyes to rescue her and it was all I could do to not swoop her up off the table and run to the door, punching nurses on my way out. I would've done anything that day to take her pain away. Eventually we stopped their attempts and I angrily refused to let them continue. I was shaking and felt sick with empathy. I had never been so directly effected by someone elses suffering. Then it hit me, I loved this little person on a deeper level than I had ever known existed........ I am a mother.

Two's company.

To date, this blog has been all about Emma and her medical struggles. But on November 1st, 2011 we welcomed a beautiful little boy and I am coming to realize how big a part both he and Emma are already playing in each others lives. You see, when you have a disability in your family, it's not just the affected individual who is to take a different path in life, it is every member of that family. Now, I know that Emma is the one personally feeling the pain of being poked and tested for the gazillionth time, but during this recent stay at Children's I had an epiphany........Isaac was making sacrifices too, big ones.

There we were, just 2 doors down from the first room we had stayed at in Denver Children's Hospital when Emma was 3 months old. It brought back so many crazy emotions of that terrifying time when everything was new and it felt like the heartache was more than I could possibly bear. It seemed as though the endless responsiblilties that lay ahead were much bigger than anything I could manage. I remember wanting to run away and hide never to be seen again, but my tiny baby girl needed me and I was somehow able to convince myself to hold my head high and remember that it was about her, not me. That was the visit where we learned that our lives would be incredibly different than what we had planned. That was the visit where I learned that I was never going to be like the other moms on the playground.

During this recent trip things were quite different. We are slowly but surely becoming more comfortable with our unplanned journey. I realized this as I, without hesitation, climbed into the hospital crib with Emma and began serenading the two EEG techs with, The wheels on the bus, 3 little ducks, and Old McDonald, for an hour while they covered her head with tiny electrodes. Now a days, I find myself pointing out Emma's best veins to use and helping the nurses understand the buttons on her feeding pump. To be honest I'm a little embarrassed by the freakish amount of medical terms, procedures, test results, bowel movements, dates, weights, and so on that fill my head.

Back to what I was saying...

Our sweet little Isaac came with us on this last trip to Denver and he was so incredibly well behaved and wonderful. He endured the 8 hour drive both ways and was toted about between The Ronald McDonald house and the hospital all week. At the tender age of 4 months he spent the night away from his mama and my heart broke a little when he and Justin left the hospital in the evenings to head to their room. It seemed so unnatural and unfair. On the morning of the 24 hour EEG they returned to find Emma exhausted and understandably weepy from a night of very little sleep. In came sweet Isaac, a breath of fresh air, smiling and excited to see the other half of his family. Emma perked up, her attitude changed and she too, began smiling. It was as if he knew that his job for that moment was to cheer up his sissy and they continued to smile at one another for the next few minutes. There were my two sweeties, my brave Emma looking like a little science experiment and Isaac ever so humbly rooting her on. It was then that I realized that Isaac would also make many sacrifices throughout his life in order to help accommodate his sister. He will be the one defending her in school against the ones that don't understand. He will be the one going without his mom during the hospital stays, and he will be the one expected to be quiet and patient beyond his years through the appointments. Although it is Emma that is having the daily battles with her body and it is her that has to endure the seemingly endless therapies, Justin, myself, and now Isaac will be there with her for every step of this crazy journey. There may be many times when Isaac is our little unsung hero and because of this I have decided to change the blog and make it about all of us. I will continue to focus on Emma's medical updates for those who like to keep up on her but now you'll get the added bonus of learning all about Isaac and the equally special little person that he is. I think the two of them are forming an amazing bond that will stand the test of time and I can't wait to see what they learn from each other.

We are still waiting on most of the test results from our recent visit to Children's. We were pleasantly surprised to learn that the EEG reported no actual seizures. The movements we were seeing are called *Myoclonic spasms and can become more serious if they start happening frequently. We have decided not to treat them for now as the medication is really heavy duty and comes with dangerous side effects that we felt out weighed the spasms. Next week we are heading to Grand Junction for another round of Botox treatments with Dr.Deering and will also be having a much anticipated visit with a geneticist named Dr.Manchester. He has quite a reputation for diagnosing rare disorders and I have been pursuing an appointment with him since Emma was about 6 months old, so needless to say we are looking forward to finally meeting him.

* myoclonic spasm, the twitching of one or more muscles, associated with a spike wave EEG. This is usually associated with various benign epilepsy syndromes - benign myoclonic epilepsy of infancy, juvenile myoclonic epilepsy, etc. Children usually grow out of these forms of epilepsy, with little or no ill effects.

Testing, testing, 123...

Post EEG hair :-) I couldn't help myself.

              What would you do if you knew that you had seen seizure activity in your child but all the tests kept coming back normal? When seizures are left untreated they can be very debilitating to the person having them and sometimes even damaging to the brain. Recently Justin and I have seen what we are sure is some sort of seizure in Emma. We've seen it 4 times now, so I called her neurologist who scheduled an EEG (electroencephalogram). It was her 4th EEG and the other 3 have all come back normal, but still no one is convinced. It is tricky business catching a seizure, because unless she is seizing during the EEG you generally don't see much. This time they asked for a sleep deprived EEG.  She was to miss 4-6 hours of sleep in a 24 hour period. This is quite a feat for an 18 month old. Well, as of yesterday it had been 5 days and we hadn't heard any results. Turns out the test was no where to be found.....seriously!? So after spending 3 hours on the phone with 2 hospitals and 1 clinic I was finally able to get the test to neurology. It hadn't even been read yet. Within 20 minutes the neurologist (Dr.Collins) called me to say that the test was abnormal. I cried, mostly happy tears, because they finally saw something and seemed to be taking it seriously. She explained that the test didn't show any actual seizures, it showed lots of abnormal electrical activity in her brain and that, along with our descriptions is enough to make her think that Emma is having seizures. The trick is properly treating them when we don't know exactly what type of seizures they are. So, the next step is a 24 hour video EEG, which will be done next week.
               On February 19th we head to Denver for the 24 hour EEG and another ERG (electroretinography) as requested by the genetics team. An ERG is an extensive eye exam that will require general anesthesia, specifically they are looking for abnormal function of the retina. During this trip we will also be seeing a gastroenterologist, a dietician, and of course neurology. So, please keep us in your thoughts and prayers as next week will be a long one.
             To end on a happy note....
Last Thursday we saw the orthopaedic surgeon who informed us that Emma's hips are finally in place and the sockets are forming. Yay!!! At the last appointment there was talk of extensive surgery because they didn't seem to be improving much, but it turns out all the crazy brace and harness wearing has finally paid off and her hips are well on their way. She will only have to wear her rhino brace at night now. GO EMMA!
    

It's not sad!

         Last summer at a reunion, a well meaning family member kept mentioning how "sad" Emma's situation is. A couple of months ago a friend stopped by the house and while watching Emma's efforts at tummy time she lovingly said, "how sad." Then just last week, while on the phone, I was enthusiastically bragging about Emma's newest accomplishment, (rolling from tummy to back) and I listened as my good friend choked back tears and tried to sound happy for us. I know that all of these are nothing more than kind gestures of sympathy, but it is so important that we not look at her in this way.
         Is Emma frustrated? .......Probably more than you or I will ever know. Does she get mad? ....... :) Yes, this kid has more feist than she knows what to do with. Is her life challenging? ..........Extremely! But, one thing that she is not, is sad. Saying that she is sad is like saying that she is pitiful or hopeless and that is simply not true. She is a fantastic little girl with more determination and spunk than you can imagine.  Emma puts more effort into sitting up or holding a toy than I have put into anything, ever. She is constantly smiling and often explodes into contagious bouts of laughter. To show her only sympathy does not give her the credit she deserves.
         Believe me, there have been many a therapy session when both Justin and I have tried desperately to hold back tears as we watched her tireless efforts to achieve the most basic of human behaviors. While it is okay to acknowledge her struggles, feeling sorry for her won't get her anywhere. To achieve the best possible outcome we have to look at Emma as if we expect greatness! No one wants to be pitied, so the next time you see a person with special needs instead of feeling sorry for all that they can't do, recognize what they CAN do and try to imagine the time and effort that it has taken for them to achieve those things. Emma is not a sad case, she is a CHAMPION and a SUPERSTAR!!!

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.