HOPE'S STORY, PART 9: "SOMETHING PERSONAL"

This is the first entry I was able to write in my journal while we had Hope with us.

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21 Oct 2011

Today Hope turned four weeks old.  

No one thought she would make it this far.

If she lives two more days she will be one month old.

For her four week birthday we went over to Uncle John and Aunt Celeste's with some pies, ice cream and popcorn and visited...

This is the only picture we have from her one month birthday.  
You can see her birthday table cloth on the table.

It's amazing how time runs.

It's funny how I count the hours.

And how my mood is so tied to Hope's.

Her days seem to be getting harder.  She had three or four of her seizures right before we went over to John and Celeste's.  She even cried out twice on the first one--something she rarely does.  Hope doesn't cry or make many sounds but when she does my heart flutters.  I can't wait for the day I get to hear her laugh or even cry as a healthy, perfect baby.

I love this girl so much.

I love her personality and her little gestures.  Sometimes when I hold her she'll suddenly duck down like something scared her and I just cuddle her and help her feel safe.  Sometimes she'll push in to me like she wants to be snuggled and so we do.  When we change her diaper, she has a favorite position--we call it froggy-style.  She bends her knees almost to the point that her feet are even with her bum.

Froggy-style

  She also likes to leave her arms free--not wrapped or swaddled--and sometimes she stretches so much I wonder if it's a seizure but she'll have a little smile and swing one of her fists/arms in circles.

She has a cute little turtle face she makes when she presses her lips together.  And she yawns huge and after kind of smacks her lips together and folds her bottom lip over the top one and it is so cute to me.

She has the longest eyelashes and the richest, reddest cheeks and a cute pointy little chin.

I love her perfect little lips and all the shapes she puts them in.

Sometimes when she sleeps she has what I call her 'royal look.'  She kind of sticks her chin out almost like she is looking down her nose at you, but has the purest, most angelic expression on her face.

She has lots of dark hair that is getting longer and I love looking at the top of her head when she is lying on my stomach with all her hair...

It's amazing how beautiful she is to me.

In so many ways she is like a normal baby--she gets fussy in the evening, she "woke up" about two weeks after being born and has her eyes open all the time now.

That was also about when she stopped eating.  If there is anything difficult about this, it is watching your child wither away in front of you, and not being able to do anything about it.  Hope nursed almost immediately at the hospital for a good 40 minutes almost every time.  When we came home three days later she nursed about 5-6 times in 24 hours the first day and then gradually stopped.  No matter how many times I set my alarm--day or night--and sat with her for 2 hours at a time to get her to eat, she would not.  We tried bottles and syringes with milk and it was almost like she forgot how to swallow.

That was something I thought about before she was born--it wasn't the encephalocele itself that would hurt her, but some effect from it.  Would she be able to breathe?  Swallow? Have a gag reflex? Suck? Move her body?  When she was first born she was deep blue and her arms just flopped out and I was prepared and I thought this is it, but then they suctioned out her mouth and she started making noises and moving and she was alive.

My next thought was how much capability does she have?  She seemed to have some difficulty breathing but had seemed to work it out by the second day.  We didn't know if she could swallow or gag or suck...so Tyler put a glove on and stuck his finger gently in her mouth.  The first things she did is bite him.  Cute girl.

Then she sucked and gagged when Tyler put his finger deeper in her mouth.  My heart started soaring cause maybe she would live much longer and be physically normal except for her little bumps on her head.

Something else amazing took place and I still see it as a tender mercy from the Lord.  The morning after Hope was born, Tyler picked her up and Hope smiled a huge smile.  I didn't think newborns smiled like that.  And it didn't stop.  Four weeks later she still beams every once in a while--like when Tyler tickles her or gives her raspberries or if we play with her ears or just move her or dress her or if I pull her sleeve down to her hand when I am undressing her.  She is smiling right now on Tyler's lap as we lay in bed.

I love this girl so much.  She makes me feel like I have never felt before.  This is the hardest thing I have ever done in my life...[but] I wouldn't give up these four weeks for anything.  We have one beautiful, angelic, tough and celestial little daughter who we will get to raise in a more perfect world and will be with us forever.

I love her.  I love Hope so much.

And I love the Plan of Salvation that makes it possible for us to be together.  All my life the resurrection has been something cool in the future that I will have a part of.  Now it means much, much more.  It's when I get my daughter back.  I will be standing at her grave waiting, and thanking the Lord for His sacrifice that made it possible to have her in my arms again.