Monday, October 22, 2012

one year tubie girl

One year ago yesterday I was sleeping in a waiting room far from home.  I was surrounded by the people that I love most but even their presence wasn't enough to keep me calm.  I remember waking in a panic.  "It's been too long," I cried...
My mom rubbed my leg and said. "It hasn't.  She's ok babe."  It was a full blown anxiety attack and nothing was going to make me feel better until I saw the Dr's face.  

One year ago yesterday, Mabel had her g-tube surgery.
 Not long after the panic set in, the Dr. came around the corner and said everything went perfect.  Our girl was waking up and we could see her soon.  

Yesterday I couldn't help but think about the fear that I felt one year ago.  The fear of my baby having a major surgery.  The fear of not knowing why she even had to have a g-tube.  The questions that still swarmed our hearts one year ago were overtaking.  I look back on these photos and I remember the isolating sadness that I felt.
I know that Mabel's g-tube has saved her life.  We initially made the decision to go forward with the tube because, above all else, she couldn't keep her seizure meds down.  She was still seizing constantly and it was a worry for us all the time.  Secondly, she wasn't gaining weight and was having far too hard of a time trying to eat and grow.  All of her energy was expended on other things like smiling, and learning to sit up.  
 On the day of Mabel's surgery last year she also had her muscle biopsy.  It was the one test that we thought would be positive for something; at the time...mitochondrial disease.  Little did we know that we would have to wait 10 months for results to that biopsy-results that were negative.  And little did we know at the time that I would grow impatient, find a new Dr and have a definitive diagnosis for our girl before we ever even heard word of the biopsy results.   
 One year ago yesterday we were frail.  I look at these photos and I remember the sleeplessness, the worry, the agonizing anguish that taunted my days.  I see a daddy whose scared and a mommy who has given her all to stay present but who has slipped away.  It was a scary, trying time for us and yet...we did it.  

We chose medicine and intervention for our daughter and it was the greatest thing we ever did.
Hands down. 
Looking back over this year, there was no way to tell that getting Mabel a g-tube would be one of the easiest decisions we would face in this journey.  At the time it felt like the heaviest, and hardest.  There was no way to tell that we would receive a diagnosis that would tell us that our daughter may not live to see her next birthday or that having that diagnosis would cease my grieving and help me live once again.

Looking at our girl today, I believe you can see just how vital our decisions have been in her life and in her care.  She is stronger.  She has grown.  She is joyful and beautiful.
Looking at myself today, one year out of a surgery that changed everything, I can see a mom who is more confident.  A woman is capable and true to her own strength yet depending on that of the Lord.  I can see a woman whose fear has turned to peace and a mom whose life has been altered by medical choices and options.  Medicine and the people who provide the type of care that our daughter needs, is remarkable.  I believe God has guided each doctor that we have seen and I believe that His hand was in charge of it all.  But I also believe now, more than ever, in the power of technology and research to do the unthinkable.
It has given our daughter a life that intercedes when her own body cannot.  It has given us peace of mind, allowing us to sleep easy at night and breathe easy during the day.  
I can't believe how far we have come.  
I can't believe that one year ago I woke up in a small hospital room, after puking all night and being ravaged by my nerves to face a new chapter in our lives.  A chapter that I truly forget from day to day was written because I don't know what life was like before this g-tube.  I don't even want to remember because that's how much greater things are now.
We came home and I remember the initial unsteadiness that came in our home.  I remember the grief I felt over the appearance of my daughter's tummy with a new tube.  I remember wondering if it would ever feel less like a hospital and more like a home again.
It did and it does.
We fell into a routine and we figured out how to make this new life work.  We still don't know many of the choices we will have to make with our girl but I know now that we'll handle anything that we face with alot of ease.  We'll learn what we need to and move forward with patience and alot of endurance. I feel like I gained my steady legs and am capable of doing just about anything to give Mabel the best care we can give her while we can.  
Our family has grown and adapted this year.  We have come so far and have so much further to go.  Mabel is good now.  She is stable and she is strong.  For the moments when she is sick, I am able to give her nutrition here at home rather than in a hospital.  When she begins seizing unexpectedly I can give her the emergency dose of meds she may need to come out of it.  This year we have learned that we are weaved together in a unit that is fierce.  We have faced obstacles that we have overcome and I believe we have done so with grace.  It has been difficult on many occasions but I have never been more thankful for the options that we have been given in the care of our little girl.
I understand that for some families, getting a g-tube or any other tube for that matter is a hard choice.  It's not always something that is right for a patient and it's never entered into lightly, I know.  For Mabel, it has been a great tool in her doing so well for so long.  

I will be forever grateful that we made the choice that we did.  Looking back in the journey I know that I will be pleased when I remember doing this for her.  

One year ago Mabel was 15 months old and weighed 12 pounds.
Today Mabel is 2 years and 3 months old and she weighs 17 pounds.  
5 pounds may not seem like a lot to you and me but for her, it has been everything.


Amy said...

I love you Ramee.

Anonymous said...

Thank you for sharing your stories of real life, if found your blog a few months ago and make sure to read at least several times weekly. You are an amazing family, and I am reminded of how blessed we all are. Seeing you all so happy in your family pictures made me smile. I am the mom of 3 boys, 2 are here with me and one is above watching over us. Again thank you for sharing all who read are touched by your story....blessing upon you!

Elizabeth said...

Just catching up on your posts. Your family is so beautiful- love those pictures, and love M's yellow dress. Today is G's one year anniversary with the tube. I feel exactly the same way :)