Growing Up

My baby is growing up. She is looking so old and so incredibly beautiful. I often marvel at how far she has come.

I mean, look at her. She is simply amazing.

I look at this picture, taken earlier this week, on DQ's first official  picture day, and I think "how can this child only be 4.5 years old?" She just looks so much older (at least in this picture)?

So many things she does these days are grown up. Yet, she reminds me that she is still so very little all of the time as well. It is a hard age. She wants to be big. She is big. But she wants to be small. She asks me to cradle her in my arms and hold her like a baby. She is so, so tiny, I can easily rock her in my arms, just like I did when she was a baby.

How did we ever make it this far? How is it possible that I planned kindergarten for her just last week? Wasn't it last month that she was still demanding baby food at every meal? (I guess that was last year.) 

I am so proud of my children and how far they have come. I've known that TRex is big for years now. He blows me away with his depth, his compassion, his understanding. Wise beyond his years and unfortunately, gaining more experiences no 6 year old should face. Yet, he takes it all in incredible stride.

Yet, DQ, I've not let myself see her get big. Yes, I agree with her that she is big when she makes the statement. But did I really believe it? She's not big. She weighs less than 30 pounds, but my goodness has she matured.

I can't wait to see what more she will do and who she will continue to become. Who thought this would be possible before she was born or that dreaded day in December 2009, when she was given two years at most to live? 

Dare I say that I am really planning for DQ's future . . . finally?!? Dare I believe it possible? 

I don't know. Maybe not.

I was drawn to this picture, stared at it for a good 10 minutes late last night, thinking "how did she get so old and why are her lips blue?"  I searched other recent pictures to see if was just the lighting, but no, her lips have a constant blueish tint in all of them. Pictures taken at the same of TRex, show perfectly pink lips. When did that happen? Her oxygen has been okay, hasn't it? Why is she blue?

Why do I have to have reminders of the bad when I notice the wonderful?

Growth

I've been told I worry too much, but when you see things like your child's growth chart not moving, you tend to worry.

From July 2010, when DQ was the sickest, until April 2011, after DQ's last open heart surgery and just before she was the healthiest ever, she grew about one inch. One inch in nine months for a 2.5/3 year old. That was not good. But, as DQ started to get healthier after surgery, she started to grow. Between April 2011 and August 2011, DQ grew about three inches. The single largest growth spurt ever for DQ at the time her heart was the healthiest ever.

From August until Christmas Eve of last year, DQ grew another two inches. We were excited that the trend would continue, especially since DQ had just started Hizentra and cutting way down on illnesses.

Then, I started to notice her going down hill. It wasn't enough to pinpoint, just something I noticed and felt. The doctors saw nothing they could do. They didn't feel like any changes could help, so we moved our baseline for "concern".

We measured DQ today. In the six months since Christmas, DQ has grown about half an inch. Only half an inch.  When TRex was that age, he grew about three inches over six month.  And DQ hasn't really gained weight either. She is hovering around the 28/29 pound mark.

She's not growing. My baby is not growing.

All she wants to do is be big. She wants to move out of her car seat into a booster. She wants to be able to climb onto Mommy and Daddy's bed all by herself to hear her good night story. She wants to sit at the dining room table without being on her knees and she refuses to use a booster.

My daughter is four years and three months old. She is the size of a two year old. The year before her last open heart surgery, she didn't grow at all. She stayed the same weight (between 24 and 25 pounds). Are we heading there again already?