Tuesday, February 14, 2012

Love is Sweet

What could be sweeter than than hearing your daughter telling you her "secrets" or who she has a "crush on" now, or even "Mommy, I love you."  To me these expressions of love are more precious than any physical gifts (except their art work on the floor and walls) and so I took these photos of my girls to remind me how much I love them and the gift of love they bring to me.  

Little girls are precious gifts, wrapped in love serene. Their dresses are tied with sashes and wrapped up in dreams.

"Sugar and Spice and Everything Nice. Oh My Gosh!! It Happened Twice!"

Author: Unsure

I would be remiss if I didn't say that Valentine's Day would be so much sweeter if our darling Shelby was here to help sweeten the day even more.  But I am thrilled to know that she is doing okay on her long road to recovery.  Last evening the nurses commented to me on the phone that "your daughter has captured our hearts"!  It was obvious to me the way they played with her, but to hear that personally, just made me think how special and courageous this little girl truly is.  I look at photos and snipets of video of her several times a day, but they make me sad to see her in that drug induced stupor to keep her from moving.  Plus I miss her so much, I just want to grab my keys and head on down at any moment.  But, logic kicks in and I have to remember that big sister Kira needs her Mommy too, more so now because everything is a bit confusing and the past few months have been centered around preparing Shelby for surgery. 

"In your face I see all the beauty of a flower in your voice I hear all the splendour of the sweetest song."
Author: jully

"Daughters are like flowers, they fill the world with beauty."
Author: Author unknown

Happy Valentine's Day!

Friday, February 10, 2012

My Girl in the Hood (aka Hook)

I have to say that I am loving the afternoon warm sun especially in the winter to capture some great photos, especially of Kira.  After school on this day, we took a long walk and decided to blow some bubbles, but that was a bribe, first Kira had to pose for me and oh the looks I got!

While both of us were freezing as it got cooler, Kira put her hood on and agreed to only a few quick pics.  But the reason I love these photos is because it reminds me of what she still calls her hood, it's not a hood to Kira it's her "Hook"!  Yes we forget the cute things children say at this age and while I should be correcting her, I love to hear original versions.

So here's my Girl in the Hood or "Hook" as Kira would call it!
 Perfecting the Pout!

the long road

Wednesday, February 8, 2012

One Tough Cookie

Today,  marks 2 weeks since our sweet babe underwent a grueling 10 hour procedure at Johns Hopkins Medical Center to replace her bladder inside her pelvis, re-connect her widened pelvic structures and re-construct her tiny female parts.  The Operating Room nurses were incredible, calling us every hour with updates, even Dr. Gearhart called from the operating room. I was very impressed how we were treated, but most importantly how Shelby was and continues to be taken care of;  physically and emotionally.

I was going to blog about the last two weeks, but they have been exhausting and I have even discovered that the photos I took on the first post operative day, now bother me more.  Guess the reality of her long recovery and all that this tiny child has gone through has set in.  But it's all so good.  She is being cared for by all the experts in Bladder Exstrophy, which includes the specialized ICU with exemplery staff that anticipate both needs of the children and families.
One afternoon, the resident told me that  Dr. Gearhart  wanted to meet with all the families and hae an informal round table discussion of what the surgery entailed, what to expect, etc and well, let's say he made us all feel like a part of "the team".   I am so grateful for the expertise and recognition of this gentle surgeon.  Please click on the above link and see the video of his description of the surgery.  Dr. G. as he likes to be called, has given over thousands of children with this defect a chance for a normal and happy life.  We love him!

Around 530pm our tiny Shelby rolled out of the O.R. on an adult bed, with every tube imaginable coming from surgical wounds, intravenous lines and even an epidural for pain.  She also had some interesting hardware and pins now holding her pelvis together with her little legs now straight for the first time...attached to 10 pound weights.  It was so very hard seeing her so still and swollen from the fluids and transfusions, but she made it through and we couldn't have been more elated.  My heart leaped for joy and tears of gratitude poured down my face when Dr. Gearhart came out to tell us everything went as planned.

I have to admit I still tear up when he told me "you won't recognize her, she's a little girl again"!  and he was evidently correct.  Her legs were straight and when the nurses showed me her incision sites I just cried, she is a normal little girl, who just needed to have some "major plumbing done", in laymans terms.

Now Shelby is on the long road to recovery.  Every day I pray there are no complications or issues that arise that can set her back or cause further insults to her little healing body.  I try not to think about the pain and all the what if questions my mind keeps wondering too.  I think I am more than a nervous Momma, I know too much for my own good.  However, the warm greetings from other families, the physicians, nurses and other staff members seem to be so re-assuring I can almost stop clenching my teeth:))
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