Sweet One

Although she's almost three months old, I haven't posted much about our youngest daughter, Hannah Jane.

The past months (really, the past 11 months) have been filled with lots of unknown and worry about her--and I'm certainly not one to introvert in times like that, but somehow typing it all out and posting it on my blog has seemed too simple--almost irreverent in a way. Does that make any sense?

But, recently, I've been meaning to type out Hannah's birth story and type out some thoughts and feelings I've been having--so she can look back when she's older and read them. Here is a bit of background and them some rambling thoughts. . .

I won't go into all the details of my pregancy and the worry surrounding it, but basically, we had numerous sonograms which indicated that there may be a chromosomal abnormality. When she was born, Hannah had bladder exstrophy (her bladder was on the outside of her body). She was taken only an hour or two after birth to a children's hospital, where she had surgery the next day to place her bladder in her body and stitch her pelvis together. She was in the NICU for two weeks, which was two weeks shorter than the four they had projected. She came home with her legs wrapped, "mermaid-style" and could only ride in the car to doctor appointments since she had to lay in a car bed, as opposed to a car seat. After four weeks, she was unwrapped and her little legs had freedom.

About two weeks later, though, she had to start wearing a brace for her hips. Because her pelvis had been splayed open, her hips didn't form correctly, so the brace would work on correcting this (to prevent hip dysplasia later on). She wore this all day for about 3-4 weeks, and now, she's down to 12 hours a day.

We were tracking along for eight weeks, taking Hannah to follow-up appointments, visiting the ER during a too-high fever scare (ended up being a UTI) and just enjoying her sweet disposition.
So, two weeks ago, it came as a complete shock when the pediatrician said, "Her heart murmur has gotten louder--I want to get that looked at."

Hannah had an echocardiogram done, and the pediatrician called me that same day, and told me she had VSD (ventricular septal defect). She has mutiple small holes in the septum between her ventricles and one large one at the top; it would require surgery because the larger one will not close on its own (many babies are born with VSD--and oftentimes, the holes close on their own).

I was devastated--a word that a friend used in an email has come to my mind often over the past few weeks: horrific. My sweet baby girl, who was already dealing with bladder and hip issues was now thrown into another health issue. It was mind-numbing to think that she would have to undergo open-heart surgery.

That was two weeks ago. We are in the waiting process--waiting to meet with the cardiothoracic surgeons, waiting for Hannah to gain weight (eating is like running for babies--and Hannah's heart condition makes it even harder on her), waiting to go to a geneticist appointment for potentially more tests and just waiting in general. . . . My personality doesn't like waiting. I honestly don't know who enjoys waiting--I suppose it's a bit like saying "I don't like getting the stomach flu." Who does?

She will most likely have surgery in the next one to two months--and depending on which procedure they do, she may have to have another heart surgery months down the road.

For as much as she's endured, Hannah is a tough little girl. I wonder often if she feels discomfort or pain; when she's crying, is it because she's overtired or feeling pain somewhere?

There are moments when I temporarily forget all that she's gone through--when Carly, Hannah and I are interacting during the day or when we're all out as a family in the evening or on the weekends. Hannah loves watching Carly and lights up with a smile when Carly talks to her or waves her animals in front of Hannah's face. What parent doesn't love seeing their child smile--but I can't express the emotion I feel when I see Hannah's smile. It's like a beam of sunlight breaking through a mass of storm clouds.

I love pressing my cheek against Hannah's little face, feeling her little baby breath on my skin.

I love watching her sleep with her arms at 90 degree angles, her little mouth slightly open, looking so serene and peaceful.

I love her expressions, especially when she's stretching and waking up from a nap.

I love how she opens her mouth and smiles so big, as if she is thoroughly entertained by something unbeknownst to me.

I love how she stares at her hand--holding it up next to her side--looking at it as if to say, "Well, where did you come from? And what are you doing here?"

I love how when she was a few weeks old, I would burp her and she would keep her head perfectly still but move her little eyes around--as if she was waiting for the burp to appear.

I love how when I start taking her brace off now, she gets a look of anticipation in her eyes--as if she can't wait for the freedom. And, when her legs are free--they start kicking and moving around, let me tell you!

I love how even in her brace, she is adorable. She looks like she's gearing up for rock climbing somewhere.

I love how her name came to be and I love what it means. Hannah--"God is gracious" and Jane--"gracious, merciful."

Hannah, you are a sweet child of God. It's hard for me to comprehend, but God loves you even more than Daddy and I do. The Lord holds you in His hand and knows you perfectly. We entrust you to Him and ask for His complete healing and protection. You are loved--you are a blessing.