Archives for November 2011

Hannah’s breathing continues to become more shallow each day.   She is starting to tolerate her feeds less so we have started decreasing her caloric intake (down about 15% from her normal – not doing a Terri Shiavo).   She is requiring daily enemas to keep her body moving so her stomach doesn’t continue to become distended and uncomfortable.

She is waking up every couple of hours or so.  Most of the time, she is immediately agitated and her body becomes spastic and her apneic spells become more pronounced.

On a few occasions, her body is calm, which I treasure because I lay down next to her on her bed, cuddle next to her, and just gaze into her eyes while I stroke her hair.  I don’t know if she can see anymore, but I position myself so that if she can see me, she sees me gazing into her eyes like we have done so many times over her short three years.

What gets me is when she is awake, starting to get agitated, and then I see the tears start forming in her eyes.  Kills me.  I don’t know if it is from pain, agitation, or just a involuntary reaction, but that is our cue to re-sedate her.

I can’t believe where I am in my life right now.   I am basically waiting for my daughter to die.   Even seeing the words is so surreal, like it isn’t really happening to me.

But it is.   I am constantly looking over at her and making sure she is still breathing.  Even now, just 10 feet away from me, I am straining to make sure I see the rise and fall of her chest so I know that she is still with us.

When I see the tears and the agitation, I let her know it is okay to let go…that we will always love her…and that it is time for her to be free and out of pain, time for her to explore her world outside of the jail that is her broken body.   I just want her to know that it is okay.

But then  when she is peacefully sleeping, and I get to be with her and cuddle her, smell her, run my fingers through her hair, and massage her body, I tell myself I am not ready to let her go.   Even now, knowing what her condition is, I am so sad because I don’t want to lose her.   I know that she can’t stay like this forever, but I’m just not ready for her to go.

I’m just not ready for her to go.   I know it is selfish.  But I know I’m going to lose her in a short time, whether it is days or weeks.  I don’t think it is fair.

What did we do that was so terrible that she has to suffer like this?   Am I being punished for something I did in my life?  Why after so many years of failed infertility attempts and multiple miscarriages was I blessed to naturally conceive and give birth to her — only to have her so ruthlessly taken away from me?

She never got a break!   From her second day of life, we were dealing with medical issues — ones that seem so benign now but seemed overwhelming even in her first year.   She has brought so much happiness and love into my life, more than I ever thought was possible.  Even through the years, the disabilities, the hospitalizations — she pulled through with such a spirit that was just awe-inspiring.  Why does she have to suffer so much now?

Why does she have to suffer like this?   Why do I have to lose her?   How are Ethan and Abby going to handle all of this?   Daddy?   How am I going to survive this?    My body is physically aching right now just thinking about this.

Pain-free and happy.   That was always our goal for her life.   But I feel like we have failed miserably with this over the past couple of months.  Yet, I know the only way for her to get back to that state is for her to let go and for us to have to say goodbye.

Even though I told her it is okay to let go, I don’t want to say good-bye.   I’m not ready.   I’m not.

Hannah has had a pretty mellow day.   We were given the option of going up on the valium from every 6 hours and using it every 4 hours if she needed it.  Because of this, we were able to keep her from getting agitated for a good 24 hours.   As a matter of fact, we didn’t use chloral hydrate for 18 hours, which is a record.   Of course, that record ended this evening when we had to use it just 4 hours after the previous dose.

I don’t know if it was the timing of the meds or if she is developing more of a tolerance to the valium.

My sister-in-law came over to hang out last night.   She wanted to get some lovey time with Hannah while she was sleeping.    What I love about her is that she asks questions that people are afraid to ask and makes comments that people are afraid to make (reminds me of my friend, Heather).

One of the questions she asked was about the funeral.  She wanted to know basically if it was going to be a mourning or celebration service.  Black or colorful.

I told her that Daddy and I actually had already discussed this when we met with the funeral director a few weeks ago (has it already been a few weeks?!).    We want the service to be a huge celebration, lots of pink and yellow (the colors that remind us most of Hannah), and lots of Mickey and Minnie Mouses, music, ladybugs, and monkeys.  No black mourning dresses or suits.   A true celebration of Hannah’s life.

It is surreal and bizarre to think about stuff like this when Hannah is sleeping only 10 feet away from me.    She is sleeping on her Minnie Mouse pillow that was made for her for her Make-A-Wish trip back in the spring.  She is surrounded by lots of Minnie Mouses actually – from a big 3 foot one to various adorable little ones.   She is snuggled in her bed, covered by her Minnie blanket given to her by some good friends.  Her balloon Minnie is also near her, watching over her.

Minnie and Mickey have made her so incredibly happy ever since she could recognize them.  Watching the Mickey Mouse Clubhouse for hours on end.   Spending the best time of our lives (literally) at Walt Disney World and seeing Hannah reach out to Mickey with the biggest grin ever on her face.  I love seeing her surrounded by them now.  I think Minnie will always have a soft spot in my heart forever.

Her breathing is more shallow than it was a few days ago, but right now she is comfortable.

Time for me to crawl into bed with her and get my snuggle time on.

For the past 36 hours, Hannah has had these weird mini episodes when she was awake.  Up until this afternoon, I just chalked it up to a weird form of agitation, but after thinking about it more (and having her nurse and Daddy notice it to), we now think it is more.

She would wake up and be somewhat agitated.  She was fuss, her movements would be going, and you could see the stress in her face.  Then for a few seconds at a time, she would completely stop – body stops moving completely, eyes wide open and straight ahead, and she would stop breathing.  Then as quickly as it came, it was gone again and she would be back to being agitated again.

It started happening more this evening, to the point these episodes were happening every 10 to 20 seconds and lasting a few seconds at a time.  At first, I thought it could be absence seizures (knowing that uncontrollable seizures are common at this stage of the disease).   But then I looked up absence seizures on youtube (thank goodness for youtube), and I realize that those are not the same thing as what we are seeing.

I called Dr. Goker-Alpan this evening on her cell to get her advice.  I explained what was happening, and she said that this was likely apneic episodes.   She made the comment that “we need to decide what we want to do with regards to a vent,” because this was the time that if we were going to put her on a breathing machine to do it.   I told her Daddy and I already made the decision not to hook her up to a vent.

She then explained that this is the advanced end-stage of the disease process.   That the apneic spells would likely be longer in duration.  Eventually, she will likely have an apneic spell and just not come out of it.

She made the comment that it would be peaceful and not painful when it happens.

After I got off the phone with her, I left Hannah with Daddy and our nurse and just went into our bedroom and lost it.   A million thoughts went through my mind so quickly …

• Were we making the right decision to not vent her?   But she has so little quality of life now that I feel it would just be selfish — but at least she would still be here longer for me to love on her.  But that is not fair to her.
• How much more time do we have left with her?
• Will I be home when it happens?
• Do I need to stay home every moment now just to be sure I am here when it happens?
• What will it look like when it happens?   Will she have one of these apneic spells when she is awake or will she pass in her sleep?
• Why the hell is this happening to her?   Could someone have made a mistake?
• How will our family survive?   How will *I* survive?

I will admit it.  I am scared.  I am scared of seeing her pass away in front of me, but I also want to be here when she does.  I want to be holding her when it happens.

I am scared to lose her.  I can’t imagine my life without her now.  Three years is just not long enough.

Why do I have to lose her after fighting so hard for her?

How will I live without her?

We made it.

You know how you sometimes don’t want to mention something for fear that you are going to jinx yourself and then it will happen?   That is exactly how I felt these past two weeks.

We have had three birthdays in the past two weeks – mine, Ethan’s, and Daddy’s (which was yesterday).  When we were sitting in the hospice a few weeks ago, we were so afraid that we were going to lose Hannah on one of our birthdays.   More so Ethan’s birthday than ours…we didn’t want to lose her on his birthday, you know?

But as Daddy’s birthday came and went (having turned to the next day just 30 minutes ago), I am so relieved that Hannah is still here.

Of course, now we have all the big holidays coming up…Thanksgiving, Hanukkah, Christmas…

But at least she has made it through our birthdays.

The response I have received since announcing our plans for our Little Miss Hannah Foundation have been absolutely awe-inspiring!  So many people have offered up support for helping to create it, to support, and and to help us get the word out when we are ready.

I feel so lucky to have such amazing people in our lives.

One of our biggest supporters, even from before we announced our nonprofit, have been my brother-in-law and sister-in-law and their business partners (family friends who were instrumental in getting World Rare Disease Day in the school last year).   They have a very cool business called Squeeze Play Sports.

Without even knowing our plans for our nonprofit, they felt it was important to get Hannah’s story out.   They put Hannah’s picture and story permanently on their business trailer.  When my brother-in-law first drove up with it and I saw it, I got so excited!!

So I was talking with my brother-in-law and sister-in-law about our foundation, and they have offered to do our first fundraiser to help us raise money to get the foundation created!

Yes, we are having our first fundraiser!!!    They have offered to donate all proceeds of any sales generated because of Hannah towards getting Little Miss Hannah Foundation off the ground.

So please take a look at their offerings – personalized photo ornaments, lots of personalized sports items, etc.   They also do team trophies (check out Abby’s below), so if you have a child on a team this season this could be fun trophy or coaches gift.   If you order, be sure when you send your personalization info to mention you are “doing it for Hannah,” so they know where it came from!

And if you aren’t in a position to order just yet, you can still help us support them (who will forever be supporting us) by going to their Facebook page and giving them a ‘like.’

I love my brother-in-law and sister-in-law tremendously.   They have gone above and beyond this past year in helping us take care of our family, taking the kids to their sports practices, bringing over dinner, and most importantly, treating Hannah with so much love and kisses.

For what they do for us, this is the least I can do for them – I would love to see their business grow in success right along with our Little Miss Hannah Foundation.

Today was another decent day.

I mean, I guess it was decent from the standpoint that Hannah’s agitation and pain was minimal.  Hardly decent because she can’t see me, can’t interact with me, and just is asleep all day and night long.

Is this what her life has come down to?   Brief moments, 90 minutes total today, of non-agitated awake time within a 24-hour period.  I am so, so grateful that we have finally been able to get her comfortable with the meds.

But when she is awake for those 90 minutes or so, I treat her as if she can still see, still hear me, and still interact.  I talk to her a lot, sing to her, and I even still say stuff like “Baby, wait one second, I am going to get you a new diaper.”  Yes, I actually stopped after I said that and thought about it.

Some habits are hard to break.  My head knows what is going on — my heart still holds out hope that one day she is going to snap out of it and have even just a few moments of coherence  and interaction.  I keep thinking that if I keep talking to her as if she can still interact then maybe her brain will keep trying to interact and one day give me a knowing smile.

It is also my way of keeping a connection with her, I think.  She has always been nonverbal (yet so expressively communicative), but now she is noninteractive too.  My brain plays tricks on me thinking that she is not as ill as she is, that she can still hear me and will smile or make one of her adorable faces.  I keep up the singing and talking, hoping that moment will be the one.

Then my heart aches when I realize I will not see it nor likely I will ever see it again.  I haven’t seen that smile in a couple of weeks now.

Am I really never going to get another smile from her again?   Never another moment of mutual gaze and love that we have done day in and day out for three years?

That just can’t be true, can it?