Rachel is doing a bit better today. She drank a bit more than yesterday.  Still no smiles but I think she spent a bit more time sleeping and less fussing.  We have to admit that we have mixed feelings about her doing better.  If she is going to leave us anyway, we don't know how we can bear this being drawn out over a longer time.  Also, we know where she is heading and we know that place is beyond even our highest imaginations. I feel deep disappointment for her that she can't go yet...and I feel the same for ourselves too.  I feel guilty for feeling this way - it feels so terribly wrong to say that I wish our child could go for our sake, and yet this is so hard. I gave her a bath today.  It had been awhile since I had bathed her fully and it shocked me so much I almost wept.  She has lost weight. I notice it especially in her thighs but her whole body is so tiny, so frail.  She can't hold her head.  It feels so different to hold her.  Just now Dave showed me a several videos of her laughing, and smiling, and waving her feet and arms, and it is a stark reminder of how 'not herself'' she is right now.  We laughed together as we watched them.  And marveled at her beauty and personality. I imagine that we will spend alot of time watching these again and again - because this is who Rachel is to us, and this is how we picture her in heaven - except that then she will be truly FREE. Now we only see a part of who Rachel really is but one day...oh, I wonder what it will be like to know my daughter in God's redeemed world...God, give me patience to wait.     

No change

Our respite worker kindly recorded Rachel's milk intake last night.  68mls total.  (a bit better than last night).  We have noticed that Rachel doesn't like to be touched or moved much these days.  That's tough - I want to cuddle with her but it doesn't usually work for long.  I just talked with our Palliative care doctor this morning and she suggested trying to drop some milk in her mouth with a dropper (as it seems like she is still hungry but can't for some reason keep sucking).  We're going to try that for awhile just to see if that helps her to be more comfortable.  But it may still be something like the cold or flu and she might not want it anyway. 

Dave is taking the kids to the dentist today. Ethan has two cavities and Abigail has one.  Yup, we haven't been that diligent with brushing the past year.  I guess it could just as easily have happened if we did.  But I have delegated Dave to take them because I'm too nervous.  Ahh..life feels out of control for us these days.  We have been dropping so many balls.  So, If you are still waiting for an answer to your invitation or questions or email etc...I'm sorry! I am reading everything and I so appreciate your efforts and thoughtfulness.  But we are kind of in survival mode here again and I can't think straight enough to respond right now. Thank-you for your understanding.  Some of you have asked how you can help - or given me strict instructions to call if I need anything;) I hope it's ok if I just give a blanket answer.  Meals would be the most appreciated right now.  (freezable stuff is best) I have a hard time admitting we need help or asking for it (or even knowing what we need half the time!) but this is one more or less constant need. Thank-you:) 

The Day

Nothing new.  Rachel is still just eating tiny amounts at a time.  (5 mls or so).  But she did pee tonight and we think this was the first time today.  And now just before she went to sleep, she had 20 mls.  No smiles today at all.  She was fussy, she seemed uncomfortable, and it seemed like nothing soothed her.  She seems very congested.  Sometimes she seems terribly hungry and she will suck at the bottle but then pull away and cry.  Does she have some virus or is it something else? Don't know.  I just hurt for my little girl.   
Thank-you for your comments and for sharing scripture with us.  And I know there are people who don't comment who pray for us too.  Thank-you.

One Year and Nine Days Old

From the bottles we gave the respite worker last night, we see that only 70 mls of milk is gone.  This means that in a 11 hour period, she only drank this much (and it was probably even less than this bc when rewarming the bottle, the top half often gets partially lost in the sink) She seems so life-less this morning.  We miss her smiles, her personality....and I can't help thinking that we won't see much of this again. 

About the conversation with the Doctor, the basic gist of it this: It is important to follow Rachel's lead about food.  If she doesn't want it, we shouldn't push her.  Feeding her at this point might even make her more uncomfortable.  I knew all this, but it still came as a bit of a surprise.  It was a tough reminder again of where we are heading, where we have always been heading.  It's hard too because she seems so unhappy and usually that means she wants to eat.  And now it is something else and we don't know what to do for her. There was a bit more to the conversation but I think I'll just leave it there for now.  I'm off to the gym this morning but it feels so hard to leave her today..

Last Page of Rachel's first Blog Book!

How is Rachel?  Well, she still has very little energy.  She is still eating only small amounts at a time and generally not happy.  Weak bottle sucking.  Her fontanel is quite sunken and she isn't peeing.  She isn't moving much.  It is very hard for us to see her like this and we worry for her.  Is she getting worse??  Maybe.  There are signs of this being the end but we have been here before and so it is still hard to say. I had a conversation with a doctor that I want to write about but I will save it for another day. I'm having some trouble sleeping again. I keep waking up at 3am, and other times I jolt awake feeling panicked that something is happening with Rachel.  The good news though is that Dave is on holidays this week and we hope to do some relaxing and re-connecting!  Also, because of our extended stay at the FH, we can have in-house respite ALL WEEK!! This is a big deal, especially with Rachel not doing well right now. Thank-you so much for your prayers for us. Good-night!


(added later....)
This is going to be the last page of my first blog book of Rachel's story!!  I want to end with a verse that has carried me through the ups and downs of the last year and a half.


I WOULD HAVE DESPAIRED........UNLESS...... I had BELIEVED that I would see the GOODNESS of the LORD in the land of the living. Wait for the LORD; be strong and let your heart take COURAGE; Yes, WAIT for the LORD! (Ps. 27:13.14)

A year and a half ago, we shared with our church the grim news that the baby I was carrying, had alot of problems, and that she would likely not live long after birth. And now here we are - celebrating her birthday! What a year it has been! In many ways, it has been a very difficult year. Full of tears and exhaustion. But there have been signs of God's goodness to us too. And there has been alot of beauty. A year and a half ago, I could not have seen how true God's words would be, in our own situation.  We were in the dark but we chose to believe God anyway. We chose to believe that God would bring beauty and good out of our situation if we would trust Him. We chose to wait to see what He would do. And God was true to His Word. And so we will continue to wait and to believe that we will see His goodness yet again, even in the hard days that are yet to come.

We will WAIT for the LORD.....we will wait and we will put our TRUST in HIM.  Because only HE can make anything new!  Only GOD can bring BEAUTY from ashes.   

Big Birthday Photos

Fruit Tray made by one of our Respite worker's husband. He's a Chef.  Isn't it cool?  The watermelon is crafted into a baby carriage, strawberry roses etc.... Thank-you!



I actually did manage to make the butterfly cake afterall! (thanks to a friend who watched Abigail for me Friday am) It's kind of a long story.....but in the end I was really glad that I had done it.  It felt like an accomplishment.  Way back in my pregnancy, I had planned to make a butterfly cake for her first bday - thinking that she wouldn't be here.  It feels like I did the mommy thing for her.  I know it doesn't mean much to her but I felt good about it. 

And someone else also make a really nice butterfly cake too, and there was a piggy cake, and 'rose' muffins and home-made chocolates and strawberries...!!!



I think that's me blowing out the candles for Rachel. 
AMAZING....thank-you to those who brought all this yumminess! You didn't just make cakes, you crafted them. Wow.  



Ethan and Abigail enjoying some cake and ice cream.
Behind them is a wall decorated for Rachel, with stickers and Rachel's name..
Our camera was locked up in Dave's office for awhile so I'm glad someone passed on these pictures for us. Thank-you:)

About to light the candles....
Someone told me today that when we sang the Happy Birthday song, the Sun came out and shone brightly and then after we were done, it went behind some clouds again.  I hadn't noticed that - but I loved hearing that this happened. 

Another cake given to us that didn't end up on the table...with little baskets of chocolates for the kids. 
We also got a yummy coconut cake that we are slowly devouring.

The party was a great ending to a not-so-great day.  Too bad Rachel missed the party. She wasn't feeling too good and spent most of it in the office area.  But we were so encouraged by your support! You are one very loved little girl Rachel.