Have You Seen Our Chunky Monkey?

Oh-there is our 11 pound 8 ounce chunky monkey.

Ivey weighed 10 pounds 1 ounce in October. She weighed 10 pounds 8 ounces in January. At the beginning of March she was back down to 10 pounds 1 ounce again. And now THIS!!

One WHOLE pound in just a few weeks -

She is one A.m.A.z.I.n.G baby girl!! +

Fine Motor Skills

Our little angel.
She loves to rub her new tooth.









She is learning to manipulate small objects with her thumb and index finger. Ivey loves playing with the little balls on her sun hat.
p.s. this elastic does not snap back.







Ivey has taught herself to feel her conformers between her thumb and index finger. This is about the time when she will pull her conformers out.

What you see attached around her neck to the blue tubing is a heated trach collar, HTC. It supplies moisture to her trach. There is no oxygen involved.







Another example of fine motors skills being developed at our house. However, if you were actually here, you might not call them 'fine'. Just move out of his way.

That's Ivey in the background. She is in her carrier having a snack. The blue bag contains her feeding pump.

It must be great to be the baby sister

Walker loves to help with the suction machine - normally - they fight over who will turn it on
Their little petite sweet pea - just look at their faces Sweet kisses

Most people handle Ivey as if she were a fine piece of china.
She is much tougher than she appears.
Ivey loves her brothers.

Bunny Ears with Pink Bows from Addison

Aunt Beth....and Ivey











Ivey loves to touch faces. She especially loves mouthes and noses.
One of Ivey's favorite things is her daddy's scruff (as Knox and Walker call it) on his face.

Three little monkeys jumping on the bed when the little one said....roll over....roll over

Finally.

The Foreshadowing of Our Secret Life

The further we walk with Ivey through this life, the more vital I find segments of our journey. Most of which are not important to the general consensus, but primarily to parents similar to us, especially new parents, or parents wondering if some of their feelings are normal. This may appear to be focusing more on my own personal agenda or my husbands personal agenda being that this is Ivey's blog, but let's get real here, we are Her agenda. We go hand in hand. Even though our family and friends share and witness many of our moments, it is like we have a secret life that they never witness. -And we DO- Every so often someone gets a momentary glimpse or introduction into it, but that is all. There are areas that no one friend at this point can truly relate to. I have needed to hear testimony first hand that all would be okay - from someone I knew and trusted. Managing the responsibilities or knowing where to shelve the emotional realm of certain days has been part of our journey along side the obvious medical, personal and family responsibilities. So I am writing this upon random chance a mom finds this and says, 'So it is okay'.

To talk about this we must step back and look at it full circle, not just from the adjustments we have made to our present. When Ivey was born there were many emotions running amok, most women who have given birth can relate to them from a 'normal' birth story. Add in extreme special circumstances, and you have a great roller coaster at a theme park. The moment a baby is born the mother is the primary caregiver. I nursed both boys for six months. I was their source of nourishment. In the middle of the night, I was the one out of bed for this task. There were nights I would have happily passed the torch to my hubby; however, scientific engineering has not reached those depths - YET. In a nutshell, it isn't called Mother's Instinct for nothin.'

At Ivey's birth the laws of nature shifted (it takes a mighty strong storm to shift those laws or a very powerful baby) and became off balance, unnatural. Ivey was taken to a separate place (NICU) away from me. She was literally taken from my body, and then taken from me. My body was left to heal. Healing it would do in ways that I could have never imagined. Only months later can I see it. Instead of them wheeling her back to my room for the bonding process to begin, I had to wobble down a hallway a midst confusion to a bassinet surrounded by equipment beeping. There was no comfort of my heart beating and snuggling. She was lying among the wires in an unfamiliar bed in a dark cold new world. There she would remain. After only a brief few moments, I had to leave her. If I left anything for her to hold onto that first meeting-it was only fear.

Leaving her was the hardest thing I have ever done. I am certain that God pushed me from the room that day. I do not remember moving. But this is where a very important segment of my journey plays out. I had to trust that someone else could take care of my daughter better than I could. I had to believe that this time, momma did not know best. I had to trust. I had to let go of my mother's instinct, if that is entirely possible, and allow someone else to comfort my baby, feed my baby, care for MY baby, to save my baby. The child who needed her momma the most also needed her the least.

For over a month, Ivey's first month, I left her day after day. There were two primary fears I could never let go of that first month. Would she ever know that I was her mom and how will I ever take care of this baby? Only God was controlling the days. Today, without a doubt she knows that I am her momma and I take care of her like no one else can. Hands down. Back then it was much different.

Back then she was surrounded by nurses who loved her and who could do it better. She had a doctor calling all of the shots. I was only a spectator in the nurturing of my daughter except for a few brief hours during the day. I wondered if that would ever change. It did. She would not be here today without them. They saved her. They loved her. I could not see this then, too much was going on in our lives, but I see it today. It was not a mother’s love but it was definitely love. Now I see that Ivey requires both. Hence the saying, love has no end.

Along side those moments watching someone else care for Ivey, a sea of guilt, fear, and protectiveness swelled. I wanted to steal her away - take her with me. I was guilty for leaving. I was afraid of the unknown. I wanted to suppress my fear. I wanted to rip Ivey from their arms. I wanted to run.

It was difficult to understand the range of emotions that were swelling. I still do not understand them. I do not think that I am meant to - they are part of the journey and Her story, my story. With Easter coming up, I have thought a lot about a mother's love for her child. All of this in black and white is impassive -bland -compared to any of our days. I wish you could have been in the delivery room. I wish that you could fill the sting of shutting a car door to go to a home with your baby remaining behind. I wish that for one day I could take you back and have you leave the hospital with me day after day - not knowing if there would be tomorrow. I wish you could wake up on those nights with me, with the need to go to Her room knowing that she was not there. Along with all of our celebrated days with Ivey, these are also days that I have seared in my heart. They are the days that make Her story so bitter sweet. They are the days that say I was selected to be Ivey's mom. I wish that you could experience those days not for the pain, the suffering, but for the means of knowing what great things we have sitting before us. I have not walked alone on this journey. When I look back at the sand covering the path during those days, there was only one set of footprints. God has a plan for Ivey. He even has a plan for me.

Wondering

I am going to post this even though I am somewhat hesitant. I belong to a groups of parents whom have children with bilateral anophthalmia. It is a remarkable group, online, from across the world. The group is comprised of less than 100 members. Most of the time we post tidbits of what is going on in our children's lives, the good stuff, the fun stuff, but sometimes someone looses balance. Regardless of what anyone else thinks, being the parent can be hard-sometimes physically: however, nothing can compare to the mental toll it can take on your mind, even on the good days. At some point, we all wonder what happened in those first few weeks, what did we do to make our babies this way, where did we go wrong? There is no answer. And if there were, I do not think anyone should tell us. Sometimes the guilt of thinking I could have done this to her is suffocating. I can not imagine actually knowing. This is far from a blame game. The group is formed in privacy - so I can not disclose what sparked my answer. But it is my answer to our situation. No matter how any one else views me, I move forward every day, I deal with this the best that I can, despite the conflict or stonewalls. Sometimes I just wonder.

In the beginning I wondered why. One thing is for certain, you can not change anything now. No matter the outcome, our children are to be the people they are - not the people others think they should have been. Ivey has a very long list of mental and physical issues; none-the-less, I love her just the way she is. The challenge of learning to accept and go on with the way things are is hard; however, there is no other choice. Acceptance, not that I always accept our new life for the way that it is, is the only way to move forward, find peace and happiness, and love the life that we have. Ivey has definitely opened the world to endless wonders. She amazes me everyday, with every breath.

And as for other family members, or any one for that matter, they sometimes have their own opinions. I have found that they often have a harder time accepting things, and look for answers. Worse, someone is always looking for a place to lay the blame. It is no ones fault - no matter the reason. Ivey was a complete surprise. We knew of no complications until the moment she emerged, and only her cleft lip was of first concern. The flood of complications were to follow - along with all of the hormones. I know we all have our cups and our portions; just remember you have a choice each day - either your cup is partly empty or it is mostly full. There within lies the choice that we have over our own futures and our children's futures. There are no guidelines to Ivey, she is her own person - bilateral anophthalmia is only an insignificant part of her condition - she can live without her eyes and vision, many of her symptoms she will battle for her Life. We have no fortune teller to even let us have a glimpse at what her future holds. No one knows. There is not even a name for her genetic condition. All said and done, she is my life. If you have ever wondered if you could give your life for another, you all already know the answer. It is yes. I give my life in its entirety everyday - just so that she may live. We all do.
Gwen - Ivey's Mom

Milestones

At one point early in the week all three babies were sitting in front of me in the family room. All four of us were in tears. Knox was vomiting and with a fever of 104. Ivey was coughing persistently which resulted in suctioning her every few minutes, all the while praying I was not the mediator between Knox's bug and her lungs. Poor Walker was left in dire need of much attention. All of which left me crying and trying to figure out how to clone myself, and fast. Still working on that one.

That all said and done leaves only the good stuff. But before I tell you about the good, let me explain about a little obstacle I have run into. Scrapbooking. I do not do it. Not good at it. I have tried and failed. I use the pre-printed baby books you just fill in the blanks and tape in the pictures. It has worked very well with the boys thus far. It does not work well for Ivey. Her sweet book is mostly blank. It all comes down to milestones, mainly those 'first year' milestones. I can draw, write, create, you name it, but the corner of my brain for fashioning a scrapbook just is not there. It seems that scapbooking is a lot like decorating, color schemes and coordinating apply, and I fall in the shallow end there. I need some guidance here and a stroke of creativity.

Ivey has her own little set of unique and miraculous milestones. Just yesterday, she found her toes. Huge moment for her! There are many other moments -milestones- for Ivey. For example, the day she first clasped her hands together. That small task to most told us the two lobes of her brain were working together. Remember the doctors were not sure her corpus collosum was there and if it was, was it working? Hearing her cardiologist tell us that eventhough she has a heart deformity, it works fine is a milestone. How about determining that she could hear? Just letting us touch her face hit a mile marker. She had such a tremendous aversion to touch in the beginning. The first time Ivey tried to sit and to stand are milestones that tell us many tidbits of information about her that many doctors were uncertain. She can not sit on her own or stand, but she has great potential and determination. Her first smile was a God sent milestone. It finally let us know she was happy and that she could show emotions. And how could we leave out her exploring with her hands? The first day she reached out to touch my face was definitely a milestone. I could go on and on and on..... Ivey has a long list of first year milestones that need their own little space documenting their time and place in history. So if you have any good ideas, please, please send them this way.

Gwen.

Baby Weight

Ivey went to the pediatrician on Tuesday of last week. She has been as healthy as a horse for over a month, there has been no need to take her in to see the pediatrician. That is an amazing feat. During her last visit in January, she weighed 10.11 pounds. So, when we placed her on the scales on Tuesday, I hoping to see the number 11 pop up on the screen. Nope. A great big whopping 10.1 pounds popped up. Keep in mind that Ivey weighed 10.1 the week of her lip surgery in October.

Ivey did see her GI doctor on Thursday. When the doctor looked at her, he seemed to be somewhat pleased. He was very concerned about the drop in her weight, but thought she looked great. Ivey does look incredibly healthy and happy. She is growing, but only in length. We know that Ivey will be very petite; she is not expected to be on the small side of an average growth chart. Ivey has a growth chart all of her own and she always will. We are persistently tweaking with her formula and praying for results. She needs weight gain.

Also, Ivey is scheduled for her eye surgery on April the 13th. This surgery should be an out-patient surgery.

Happy Birthday Lone Ranger

The Big Brother.
After Ivey's lip surgery.














The Lone Ranger with Silver.









Always the Caretaker.






Knox and Cappie.







March 10th.............................................
The day that life changed. It happened one week earlier than it was supposed to. I was a Teacher on Friday. I became a Mom on Monday.

That was four years ago.

It has been four years of wonders.

Boys will be boys. Who ever had the great idea that things were gender neutral, well, they have not visited our house. They are different. Having a husband did not prepare me for life with boys, many things I thought my husband did to drive me crazy, well they just do instinctively. Anything can be turned into a lasso or gun. There was a two and half year old potty training declaring to me that he could stand. Never mind the fact he was too short for 'it' to reach the toilette. What do you do? Heed all warnings and use only designated toilets in our house. Life with my first boy has been a great adventure.

Knox is our big dreamer. He is our cowboy. He has evolved from the Duke to the Lone Ranger. He wears full costume where ever we go. Just a month or so ago, Wesley and Miranda were taking the boys out for the day. Knox was in his mask, cowboy hat, boots and with his stick horse 'Silver'. Wesley asked Knox if he wanted to leave those things at home. Ah, what Wesley did not know was Knox had more than one mask that Wesley could wear too!! A true cowboy.

This will be our first year without a horse cake and a cowboy theme. He decided he wanted Batman. It is our own little Toy Story over here. Did you know that Batman wears cowboy boots? And… Batman also has a Bat-horse. But, Knox explained to me that he wanted to save the world, and put it back together. I sure hope he does.

Happy Birthday Big Brother!!!!!

The Benefit of using Dr. Scholls

So, one year is almost up. Whew!
Before it ends, let's take a trip or two down memory lane.


Running had finally taken its toll on us. Our feet became the problem. They hurt - our tendons were all out of whack. Lauren was the first to tell me that her feet ached, and bad. Thank goodness, I thought I would die if I took one more step. I immediately diagnosed myself with the same problem. I scheduled an appointment with my doctor to tell her my foot woos and to make sure I had diagnosed myself properly. Rarely, rarely, do I ever go to the doctor.

There I was sitting in her office with her looking at my feet - brave woman. She said, "I think you are right, it is plantar something or other. You need to take an anti-inflammatory and stop running - for a few months. (Seriously?) Before I prescribe something, do you think you are pregnant?"

"Are you kidding? NO. Who has time to make babies with two little boys running around all day? Who has the energy? Knox is two and Walker is not even one - that just sounds insane. We would be insane. Really."

Again she said jokingly, "Maybe we should do a pregnancy test just to double check."

Confidently, "I am positive I am not pregnant."

She did a test-

I looked up and the nurse was standing in the doorway with a HUGE smile.

Moral of this story: Never ever go to the doctor for foot problems. Use doctor Scholls.