Walker and Ivey

Just too tired right now

to give the details of the week. So, we'll say it in pictures.

walker and ivey now

ivey's laughter

why they love each other

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kid kart xpress and walker

Entertainment x 2

Good morning or is it good night when it is 12:35 am? No nurse tonight, so I am on night duty bountifully trying to find something to do to keep me awake. Lucky for you, if you are reading this. If you were here, you would be watching National Treasure for the 1,000^th time with me too.

It has been a quite week around here for the most part, but that quietness all ended today. Officially Walker is out for summer, whooo hoo! But quickly let me catch you all up on Ivey. Since her trach has been out life has not been exactly what I had expected. First off, I knew there would be more time, and there is. However, it seemed in my trachless dreams that we would be out do more things, just having a ball, living It UP. Well, we have when we haven't been sleeping. It seems that she and I have both crashed. Matt explained to me that my adrenaline level in my bloodstream has dropped-significantly; therefore, I sleep (except for tonight). And what do you know, Ivey has been in a great mood, and her momma has too. Sleep works wonders.

Second, Ivey did have an appointment with her GI doc today. Let me just praise him for one moment. He is awesome partly because he cuts through the red tape and doesn't fluff me, but mainly because he comes here to Floyd twice a month so it is one less trip to Scottish Rite. Love it. He has also been with Ivey since almost day one, because he happened to be in Rome when she was born. To Dr. GI she looks GREAT! She has put on weight – a whole whopping 10ish ounces in a week and a half (an Ivey record). That puts her on the scales at 16 pounds 15 ounces. He thinks she will make it onto the growth chart eventually if she keeps growing at this rate.

We also discussed her eating habits; this is an area I rarely discuss with the general population because it is so subject to personal opinion; there fore, it is also a very sensitive area for me. Ivey does not eat. Right now we are working on food for taste, which is a huge jump for Ivey. For almost two years she has not tolerated food, and especially liquids, in her mouth and she is extremely particular as to the type of food, consistency, how much and how it is introduced to her. Like I said lots of opinions here, but keep in mind children with mental disabilities tend to have more feeding issues, blind children can have feeding issues, trached children can have feeding issues, children susceptible to aspirating can have feeding issues, children with cleft lip/palates can have feeding issues, and children who have endured 'trauma' can have feeding issues. Also, Ivey is fed so frequently through her tube that she is always 'full'. She has three bolus feeding a day running at about 1 hour a piece. She then has a 10 hour continual feed through the night. So food has no direct meaning to her. Let's just say we have a few mountains to climb when it comes to feeding. Ivey does have a SLP (speech/language) who comes once a week to work toward eating and other oral issues.

So I asked Dr. GI the million dollar question. What is his opinion about her eventually eating, wanting food? It was no surprise when he said it could still take a few years. No fluffing. This is encouraging news. She will do it. It will just take time, just like everything else. Patience and time.

He also inquired about Ivey's hobby of taking her prosthetic eyes out and at times, placing them in her mouth. When she was trached it was not such a huge concern. Even if she swallowed an eye she could still breathe. Now that she is not trached we have to be a little more observant of her eyes. Also, those eyes ain't cheap and he is worried he might have to go fishing for one.

That brings me to last Sunday at church. After communion Walker we decided to quietly (like church mice) exit from church. That is until we got to the door and Matt noticed that we were missing an essential eye. Lord only knew where that eye was for the next few minutes (and I mean that literally). We had just marched across our isle, up to the front of the church, kneeled, walked back around to our section of pews, grabbed our 'stuff' and quietly tiptoed (yeah right) to the back door of the sanctuary. We were heading quietly out the door when Matt saw it, or didn't see it. So there I had to march back to our seat whisper to Jayne that we lost an eye and then both of us went to scanning the floor. I was silently praying that she did not drop it in the furnace grate, when I hear Matt 'whispering' my name from the back of the church – he apparently had found it somewhere 'in' Ivey's dress. Shouldn't he have looked before he sent me on a pilgrimage to the front of the church? Remember everyone is still seated, taking communion, only the choir is singing. Needless to say, we drew attention to ourselves. Like I have told you all before, God must really have one strange since of humor. Exactly why our lives are so amusing to him I would love to know.

Letter to Ivey: Our New 'new normal'

"Life isn't measured the number of breaths we take, but by the number of moments that take our breath away." Anonymous.

You know when Ivey was first born I would reluctantly wonder why her life was destined to have fewer breaths than my own. The days were long, the nights were longer and the sound of her cries were excruciating. The nurse would arrive at 11:00 pm and I would take my place as a bystandard for the following eight hours as the nurse became Ivey's primary caregiver. Those times were so hard and unnatural to me as a mother. I had to step away from being a mother; I was to retreat to my room and sleep while a stranger fullfilled my place by her side. I would retreat leaving a nurse to console her as her breaths would resonate from the makeshift nursery off of the kitchen, down the hallway and into our bedroom. Some nights I would sit in my bed and silently cry through the entire night with her, other nights I would stand in the hall for hours nervously wondering if I should go to her, stay there and listen or return to my own bed. During the worst of those nights I would go into her room and watch Ivey's nurse aimlessly try to console her. Those moments would take my breath away.
And then she was trached. All cries stopped. I remember the first few days in the hospital standing beside her bed stroking her arms and legs praying that the trach was the right choice, there was a choice, and praying that it gave way to more breaths, longer life. Doctors and nurses began their teaching process immediately after her surgery. Instantly we began to learn how to work equipment, change trachs, change trach ties, read vital numbers, administer new meds,learn to respond calmly in emergencies, how to recognize an emergency, and what to expect when she woke up.
I can vividly remember the first day she was conscious after being trached. No one prepared me, eventhough I probably should have known, but I was still stunned when she no longer had a voice, a silent cry. The cries were only agonizing facial expressions with no sound to accompany them. My heart was broken. I can remember watching Ivey and wondering if the moment was really happening, or was it all part of a horrible nightmare. So Matt and I would cry for Ivey some days. Her silence was something that we would become accustomed to, only her coughs and eventually the new voice with the use of her pacimuir valve would become the familiar sounds and breaths of Ivey.
I wish could remember the first time or even the day, but some how I failed to record one of Ivey's most astonishing accomplishments in my mind or even on paper. In as many ways as Ivey has stunned the medical community with the rare magnitude of her diagnosis, she has left as many doctors with their jaws hanging for some of the astonishing accomplishments she has made. Ivey learned to stick her little thumb into her trach to block it off and to 'talk', mainly ahhhhs. I can remember the pulmonologist watching her one day, laughing, and speaking about how uncommon that was. The tiny little girl with proven stamina was also developing quite a sassy personality. You see, this small feat is unusual and even more so for someone so small and for someone with an uncertain mental development. But over the course of the following year and a half, Ivey would remove her humivent, pasimuir and even her cap so that she could 'talk' by herself when she wanted. The sounds were frequent even though the sounds were not the true sounds of Ivey. At times, she became so determined to be heard that we would intentionally need to distract her during church so not to interrupt the sermons. I found a place where the trach and I could co-exist together. Her breaths became determined, spiteful at times and some where during that time I forgot to keep count of them.

Exactly two years, one week and nine hours later, we began another 'new normal' for our family. I coined our 'new normal' shortly after Ivey was born when I realized that no matter how hard I prayed, the life we were living right up till 5:30 am on April 25, 2006 no longer existed. It would never return. And when I said the words 'new normal' aloud, something inside me was sad and longing for the time when things were comfortable, the times when my vision of the future was still in tact. Over the course of the past two plus years, I have come to terms with our place in this world, the daughter with a more grueling life than most; I actually have come to prefer this 'new' life to the old. Gradually, I shed the old skin and learned to love the new. No longer do I count the breaths that Ivey takes. I know that at the end of this road, no matter where or when the road ends, it will be the moments, and there are countless moments when my breath has been taken from me. Those moments are filled with happiness, sadness, fear, loneliness, joy, pain, but mostly they have been filled with excitement from the unexpected. Unexpected moments from my little girl in the most unanticipated times.

A part of me resents being told that 'God chose us for this journey' because of various strong characteristics that Matt or myself retains. I still do not believe that God chose our family because of some bold charisma that either one of us has. In our 'new normal' God did make a choice, but who am I to give my opinion as to "Why" I have been so blessed? Sometimes I rather think that I was full of so many weaknesses that God sent me a pillar of strength in a very petite package. She is a package that most people see as weak. I beg to differ. Maybe we just try to comprehend, in any way possible, why God would send such a complicated person to this Earth to shake us all to our bones, to make us search our hearts, to make us test our outlook of our fellow neighbor, even our neighbors like Ivey. There are those who see her as less than we are, not complete. Maybe God has pushed us to put ourselves in our friends' shoes. I don't know. All I know is that my life is richer today than it was two years, two weeks and nine hours ago. I know that no matter how many breaths are left in me or in Ivey, we have truly lived life.

So Ivey's trach has been out for one week now. It is amazing that one week can go by and seem like a vision from another life. I think God does let our minds work in very gracious ways. Only one week has passed and the trach seems so long ago, just as so many of Ivey's other complications seem forever ago, another time, another person. One week ago I heard Ivey's true cry for the first time in over a year and a half. This time when she CRIED, I LAUGHED. It was sweet music to my ears. This week the simple sounds like a true cough, her hiccups and a sneeze have been the sounds that made me cry. Tears of joy and happiness only. Any fear has washed away. A friend left a message for me saying, "You made it through the trach!" How right she was, and I know that somewhere out there another battle awaits us, but for now we have, for the first time ever, a little girl who smiles, laughs, sleeps and loves without complication or hesitation. These too are the times that take my breath away.

I vowed to right a letter to Ivey on her birthday every year. I planned to do this before she was born, a special mother-daughter thing. I wrote her a letter a few weeks after her birth. It hurts to read it. Again I wrote her last year. I think this will be my letter to Ivey for her second birthday. Maybe it's not directly to her, but she is my inspiration. She gave herself the best birthday present she could get – decanulation. She gave me the same gift, though a little early, for Mother's Day. I often look at the relationship that I have with my own mother and wish that I could have that same opportunity with Ivey. However, Ivey and I have a very unique relationship. We both search out independence from one another, yet we will always rely on the other.

I am blessed that God did not choose the most qualified for this task, but that he has qualified me every single day, still does. I can honestly say that now I long for the moments that life will take the breath out of me, either with a punch in the gut or with a smile, but I am ready for either. No longer do I look at life as how long I have been it, but the living that I do in it. As I listened to the preacher during my grandmother's funeral yesterday say "God does not intend for things to be like this...." It took all my willpower not to standup and shout "YES, he does!". God intends for there to be death just as he intends for there to be birth. We are to witness them both, no matter the terms that they bring with them. You, Ivey, are living proof of that. So life baby girl, it is not the number of breaths you take; it is what you do inbetween the first breath and the last breath that WILL be your story ... your memories.... your legacy. Baby girl, You, I thank for such a wonderful gift.

My trach-free sweet girl

Matt's trach-free baby girl

Today is a big day- Ivey got her trach out! Gwen and Matt are enjoying watching sweet Ivey play and talk, trach free. Gwen got to do the honors of taking out Ivey's trach. She is doing great and will be coming home tomorrow.

Ivey's Decanulation...No More Trach