MRI results

We got the MRI results tonight.  Nothing much new to report.  The doctors could see that she has bi-lateral arteries leading off from the heart. (one left and one right) The right artery that we could not see by echo is 'extremely pinched on the side near the heart'.  The left artery is a bit better and seems to be the one carrying the bulk of the flow to the lungs, but it too is narrowed.  They could not find any collateral arteries. (alternative routes for blood).  The MRI seems to show that the two arteries are most likely ducts and not collaterals.

So, basically we didn't learn whole lot more than we knew before.  We are still glad we did the MRI.  It does assure our Cardiologist that her readings of the echocardiograms have been reliable  - they have given us enough necessary information to go on until now.  We can continue to do the echos regularly to 'check in' on these arteries, so to speak.        

One new milestone that I keep forgetting to write about:   Rachel has been reaching up with her hands alot more lately.  She is starting to touch our face.  The other day she tried pulling down a blanket that was hanging over her basinet.  I love it! Way to go, little one! You are still learning in your own time and in your own way.  

We have decided to go home tomorrow because she has been doing well and because we have no way of predicting when she might crash again.  It might be a tomorrow or it might be weeks from now.  And even though this place is so wonderful - we are missing home too. Dave and I have had some time to recover here and we are so thankful for it....so here goes - back into the fray again. 

This afternoon, someone came in to do music therapy with the kids here.  We put Rachel's feet on the drum and she loved it!  She was 'talking' and grinning away.  Here's a picture that Kate (the play therapist) took of her.  Thank-you so much Kate!

MRI

The MRI today went well!  The most stressful part was getting the IV in.  They managed to get it into her foot (still the size of a doll's foot). Poor girl.  She cried so hard.  We were nervous that this would put too much strain on her heart. (and cause another heart stopping episode) After pacing the hall with her, someone took pity on us and gave us a private room.  Thankfully, she settled after about 20 minutes and she was perfectly relaxed for the MRI.  They bundled her up snuggly and used pads to protect her ears.  We were told that the Doctors (three of them!) were really happy with the images they were able to get.  The main goal of this is to see her pulmoary arteries. So far we have only been able to see the left one in the echos, and they also want to see if she has any other sources of blood flow from her heart to the lungs.  (called collateral arteries) We should hear from our Cardiologist tomorrow.  Here are a few pictures...

Is our little girl really under all that?!

One of the toughest things I saw today was a little girl about Abigail's age, sedated for her MRI.  We talked a bit to her parents just before going in.  They found a brain tumor 7 months ago and did chemo...but now they are seeing something else.  I can't get her little hands out of my mind - they looked so like my daughter's hands.  I wanted to run over and squeeze them - even though she wouldn't have noticed.  Father in heaven, be merciful to them today.  

Later today we had a chance to relax in our room a bit before Mom and our older two kids came to visit.  They came for supper and a Pumpkin carving/Halloween party.  They kids dressed up and did some fun activities with a bunch of other kids.  Mom and I ducked out for a nice brisk walk around the duck pond while Dave took 'kid duty'.  It was a great way to end the day.   

Ecclesiastes 3:11

God has made everything beautiful for its own time.  He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end. 

MRI tomorrow

Rachel had two big bms tonight and they went well!! She was straining hard but she is ok!! There seems to be no real way to predict when it will be a bad or good one.


Tomorrow at 11am we will be at the Children's Hospital putting an IV in Rachel's body, most likely her head.  I'm trying not to think about it too much.  I know they do this all the time but I really hope she doesn't cry too hard.  After the IV is in, we hope to settle her and keep her happy until 1pm when we do the MRI.  We need to put off feeding and try and keep her awake, both of which are challenging for her.  We plan to feed her just before the tests, hoping that she will be full(er) and groggy.  We need her to be as still as possible to get good pictures.   


We received informal word back from Toronto yesterday. Rachel's case was presented there last week.  Basically there is no real difference between their opinion and and Edmonton's.  One difference is that they think her arteries are ducts, not collateral arteries. (we've been going back and forth on that one) Her 'episodes' seem to point to them being ducts - and they seem to be more dynamic that doctors first thought. (meaning they can shut suddenly and widen, rather than close slowly) Surgically speaking, there is only one pre-transplant surgery that has a remote chance of working temporarily - to keep the ducts open.  (with a 90%  post surgery mortality rate) Rachel's situation is much more precarious than other babies that get these surgeries, in that her arteries and veins are even more abnormal than usual. And we already know that a transplant is not an option.  In summary, (in their view and ours) we are doing the right thing.  This wasn't a surprise to us - but it did satisfy some curiousity.  The MRI should help us answer the question of what those arteries are doing and how they might act.  


Please pray for us tomorrow.  Thank-you! 

Rollercoaster of Emotion

I have been moved by alot of things lately...but there are three things that really stick out in my mind.

1. Walking into the Flames House and seeing this package left for us by Alexander's parents.  It was a bag of toys that Alexander had not had a chance to play with. (and they thought he would have wanted to share them with our kids) Also, seeing the lamp lit for him downstairs.  (meaning a child has recently passed away in the House) We won't forget you Alexander!

 2. Reading a Letter to Rachel written by a dear friend.  (she has given permission for me to share it with you)  What a blessing you have been to us - a source of encouragment in this journey. You express so well in this letter some truths about God and Rachel's life. Thank-you! To read it, click on this link. Beauty in Weakness

3. Seeing pictures that were Gifted to us by a new Friend (and amazing photographer!) Check these out!  http://www.chelseyrobertsphotography.com/blog/  What an incredible gift Chelsey! We have looked through these pictures several times - laughing and crying both because they are so achingly beautiful.  We will never forget that day! We were preparing all day to help her 'poop' - she had not had one since the first 'episode'.  And suddenly we had this perfect window - you came in short notice - and Rachel was so happy.  It was like Someone was orchestrating this....  

How do I explain the past few days? 

Lots of emotion

stress - (a doctor likened it to post traumatic stress disorder)

laughter too!

Love.

Because of the stress after Friday's episode, we decided to move back to the Flames House on Sunday night. I now have an entirely different view of what life is like for people with sick kids.  I honestly had no idea.  Now we measure time by her bm's and watch a bit anxiously for signs of another one coming.  It has taken her a bit of time to recover (from Friday) but yesterday and today she is SO HAPPY.  We relax a bit and enjoy her.  But always in the back of our minds, we wonder how long until she is not ok again.  I am having trouble sleeping.  I am more irritable and have a desperate need to cocoon myself away.  It feels like my heart is in my throat all the time....and it's only been a week.  How do people do this for longer?  

Ethan and Abigail are staying with Grandma Plett at our house - they are travelling back and forth to visit us.  This has given us some space to try and uncoil ourselves a bit.  Yesterday night we revisited some of the funeral ideas we had made while I was pregnant.  This morning we started putting together some pictures for a slide show.  It was painful - the tears were flowing - but it was a good time for us too.  We need this time together, without the older two. (and they need a break from us!)

Yesterday morning we had a pretty neat moment in the Dining Room.  Rachel was really hamming it up for some of the staff. (picture below) She sure has been turning on the charms alot here!! Then, we waited till my mom brought the kids over (in case things didn't go well) and we gave Rachel a suppository.  Thankfully, she had a small bm and it went well. We may decide to do this every two days.  (They seem harder - maybe because she has been moving and feeding less?) What a rollercoaster of emotion we are on!!!

My new faveorite song

http://worship.vintage21.com/2010/05/new-song-in-feast-or-fallow/


It's called "In Feast or Fallow" - there are so many good songs that I can't get on the blog player.  Just had the urge to share this one. (sorry, you'll have to stop the player on this page first)

We're alright

We're doing ok today.  Rachel is sleeping alot and eating very little - kind of the trend of the last few days.  And we are holding her and riding this rollercoaster of emotions.  I left this morning to get a few things from the house - I thought I might go crazy sitting around but once I was there, I was so anxious to get back.  My stomach has been churning and I'm sleeping lightly, wondering all the time how she is doing.  My eye has been twitching the last few days - maybe stress?  We don't have any stress do we? God, help us to rest in you.  I need your peace today. 

Another set of Dave's aunt and uncles dropped in to visit today - thanks for the pizza! And for making us laugh - we needed that! And for praying with us before you left.  And my mom is here - I am so very glad you are here Mom!  Dave is working on his sermon today at home.  Rachel is LOVEing her swing that a friend just lent us.  Mom wants to hold her but she seems happier in it than in our arms right now...

I am not fighting to keep her, but I don't know if I will ever be ready to let her go either.  This is SO HARD. 

Alexander passed away at 1 am this morning.  His parents said he 'waited' until they were asleep - and then he knew it was ok to go. 

We are doing fine for baby clothes now!  And I have lots of baby socks - one set was even knitted for her!! Thank-you for your generosity!  

Another episode

We are feeling shaken after another life-threatening 'episode'.  Thankfully it happened while I was at home and not while I was walking the kids to and from playschool.  A friend came over to take care of the kids and Dave drove, a bit crazily, back from the church.  I spoke with the Palliative Care Doctor on call and he walked me through the worst part.  I gave her one shot of morphine and that seemed to help.  (it started with a bm, like on Sunday, but it was such a small amount this time)    

Dave and I both lay down with her this afternoon - while Dave's aunt Carol played with Ethan. (she was out from MB for a short visit) We didn't sleep.  We just drank her in.  I wanted to stay there forever, the feel of her breathing in and out, in our arms.  This is her lying on our bed. (picture below)  I also made some small hand impressions in clay that I had been meaning to make - I thought they could be hung on the Christmas tree.  I made one for each of the Grandparents and for us.

God, give us courage.  Give us peace.  Help us to know in our hearts that 'all is well' even when our bodies feel so shaken. We wonder what this means.  How many times will we go through this? Should we go back to the Flames House? But we have really missed our home...There are decisions to make and so much we don't know but we say "We trust you God.  Our lives are in Your hands. Your timing is right. And we can trust You because you love us." 

Alexander

I am hurting today for our friends at the Flames House.  Their little boy Alexander slipped into a coma last night (because of an inoperable brain tumor) and they are praying for God to take him home.  Dear little boy..you are so loved.  Soon you will be in Jesus' arms and dancing with angels.  But oh the pain of saying good-bye..we both long for you to be free of your pain and long for you to be here too.

It's hard to think of anything else this morning. 

I loved to watch him play with his Thomas train set and sit with his parents at the table.  Little blue doggy in hand, soother in his mouth.  The coolest tattos on his arms and legs. And so in love with his mommy and daddy.  I can still see him in the kitchen with his arms around your necks, and sitting at the table, so bravely eating his cereal on his own, and asking for ice cream.  We only knew him for a week but he has made a deep impression on our hearts. 

sigh - sometimes it feels like there is too much pain. God, shine some light down here please...

Rachel is doing well.  I walked all three kids to Ethan's playschool this morning,  with morphine and Hospital number in my bag - just in case.  I have been feeling nervous about something happening while I am alone with the kids.  So, my mom is flying out tonight.  Thank-you mom.  Dad is also coming out next week and then they will drive back together. 

Yesterday we were so blessed by a friend from church - she came over to help us with getting Ethan to playschool (turned out we didn't need her help in the end) But then she went grocery shopping for us and brought us supper.  Thank-you so much.  It is good to be home.  I was quite nervous packing up yesterday.  And I still haven't unpacked the kids stuff or my clothes - maybe I'm still half wondering if I need to.  But at the same time I am really glad to be home.  The kids are so much happier!! It is wonderful seeing them play contentedly again, so obviously glad to be here.

We weighed Rachel a few days ago after a bath. She is now 6 pounds 11 ounces, the same weight as Abigail when she was born.  She has been drinking such tiny amounts lately - I was surprised that she had grown at all.  Way to go, precious! We are cheering you on.

"Therefore, since we are surrounded by such a huge crowd of witnesses to the life of faith, let us strip off every weight that slows us down, especially the sin that so easily trips us up. And let us run with endurance the race God has set before us. We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith.  Because of the joy awaiting him, he endured the cross, disregarding its shame. Now he is seated in the place of honor beside God’s throne. Think of all the hostility he endured from sinful people; then you won’t become weary and give up." Hebrews 12:1-3 

She pooped!

We gave Rachel a suppository around 6pm and it worked - she pooped!  And she did very well - just her normal straining and nothing like what happened on Sunday. This is a huge HUGE relief!! We were feeling on edge all day wondering how that would go.


We are still planning to move home tomorrow morning - our kids really need it.  It's been a tough few days for them - lots more acting out and volatility.  It was a very full day for all of us and we are wiped.  I feel like I need to go home too - but at the same time I am nervous about it too.  We need to work on a bit of an 'emergency' plan tomorrow.  It sounds like we will be given some pre-measured doses of morphine if needed.  (should what happened on Sunday re-occur)   Please pray for PEACE to rule in our home and a real sense of His presence with us.  Pray that we will know how to parent our kids when we feel like we have so little reserve left.  Thank-you. 


The internet isn't working well again..so I will end there for now.  Good-night! 

This afternoon

I just spoke with one of the Palliative Care Doctors.  This afternoon we are going to give Rachel a suppository because she still has not had a bm since Sunday.  If she comes through ok, we will try and do this regularly - hoping that if the amount of bm is lower and more regular, it will put less strain on her heart.  We are timing it when the Doctor is more available to be here. Please pray for us.

Thank-you to everyone who has sent notes, and gifts!  I put pictures of some of the gifts on the blog but there have been so many many more....you keep giving in a wide variety of ways - and we value each of the many ways you are expressing your love for us.  Thank-you for expressing a desire to come see Rachel too - We love you!! and we would Love to Share her but we feel a need to spend this time as a family as well as getting some regular normal day stuff done. I know you understand.  We know you are loving us from a distance.  Keep praying.  Thank-you:)  

Pictures!

Snuggle Before Bed Yesterday

The Sheep cap arrived today!  Thank-you dear friend! (and it does cover her forehead - it's the perfect size)  I picked it up at home after my dentist apointment.  Rachel wore it to her Cardiologist apointment.

Making a hand scrapbook page...the little gold hand in the middle is Rachel's. Kate is our 'play therapist' at the House.  She's fabulous:) 

Lump in my throat

It's a lump in my throat kind of morning.  Dave and I are both feeling more sad today - as reality sets in. Thank-you for your prayers.  God is good to us.  We are surrounded by such wonderful people here and we sense your prayers and support.  Some of the staff have mentioned that perhaps we were given a 'trial run' for what is to come.  And there are some benefits in that.  It does help prepare us in some sense - it gives us an opportunity to plan how we want to respond the next time, what to do for Rachel, our other two kids etc...It also causes us to deeply treasure our time with her.  We are soaking her in, the warm weight of her in our arms, her toothless grins...! 

Rachel is doing really well.  She is sleeping and eating and smiling.  She is so strong!

The MRI is not happening today though. That was disappointing for us. It has been booked for the 27th now.  I may have misunderstood the date? And the MRI is booked solid until then. We are going to try another echo today, this afternoon.  I'll post again later.

(later) The echo went well. Dr. Fruitman was able to see more this time than before.  But basically there are no changes that indicate any reason for her 'episode'. What we do know is that Rachel is more fragile - she has less reserves available, which means we still have to be prepared for this to happen again, at any time.  She has not had a BM since Sunday (this is what set everything off).  We are nervously waiting for her next one.  I find my heart lurching with small changes I see in her, more blueness, congested sounds, the way her eyes look. (She is really doing so well so I may be a bit hypersensitive.)  I still don't think I can write about Sunday night.  There is nothing easy about this. I am asking God, that when the time comes, he will take Rachel home in her sleep.  We are trusting Him, whatever comes but that is our wish. Please please pray for us that we will have courage and strength in these hours/days.

Despite the sadness in our hearts, there have been some beautiful moments today.  We made srcrapbook sheets with our handprints and the kids footprints. (embossed)  We even got Rachel's open hand on one paper.  All our kids really enjoyed doing that - Rachel loved the feel of the stamp pad on her feet.  Then we joined the house in listening/dancing to some great fiddle & guitar music.  Both men are chaplains as well.  That really was a bright spot in our day,  Thank-you!!!

I want to share a link. It's the video about the Flames House, that we watched at Thanksgiving.  A staff here passed it on.  Thx Jason!  http://www.youtube.com/watch?v=ZclOqWMtt84&feature=email

we're ok

Just a quick note to say that Rachel is doing fine. There were no signs through the night of anything related to what happened yesterday.  I still feel shaky.  Had a rough night.  But I sensed your prayers for us. Thank-you.  We will let you know if anything changes. 

Dave talked with the kids yesterday.  Preparing them a bit for what might happen.  Pray for them.  This could be very hard for them to understand.  So far, they are doing well - they seemed very unaware of what was happening in the next room.  We are taking it easy today.   

We are going ahead with the MRI tomorrow - it should help us understand what is happening in her heart.

People have been commenting on how Rachel is looking alot more like Abigail now.  I like knowing that one day I can tell the kids that their little sister resembled both of them.

It's starting

Please pray for us.

We almost lost Rachel today.  Around 5 pm we noticed that she was getting very blue and was really struggling to breathe.  We have never seen her like this and it was so incredibly difficult.  I could say so much more but it is very hard to write about this right now.  Basically her arteries and veins are more fragile than we had thought.  Our Doctor came over.  She said that the blood flow to her lungs (and brain) temporarily stopped.  Rachel has rallied but she is completely wiped out.  Because of what happened, we will be staying on longer at the Flames House. We will try and post updates when we can. This is possibly the beginning of the end.  We really need your prayers.   Thank-you.

Here are a few pictures we took shortly afterwards.  We are so very thankful for more time with her.  We are so glad that this happened while we were here, and not at home! (we were planning to leave tomorrow)  Also, we are thankful that Levi and Wilma 'happened' to be here - and they could keep Ethan and Abigail entertained while we were focused on Rachel.  Thank-you God for your provision. 

Filling in the Blanks

I am writing this after everything happened on Sunday night.  I have just said good-night to Rachel and passed her off to the nurses.  It is 11pm and I'm not sure if I can sleep.  I thought I would write a bit about the last week.  (the internet has not been working well here this last week but now it seems to be up)

Thanksgiving.  We had a wonderful meal at a friend's place.  Then on Monday, we were treated again to a wonderful meal at the Flames House.  It felt a bit like a family gathering - except instead of football, some of us watched a short news program about the Children's Hospital and Flames House.  A family (from the Hope group) did a fantastic job of sharing their story and some of the staff shared their experiences as well.  Dave and I talked later about how our hearts went out to these 'poor people' who must use this amazing facility - and then we realized that we were those 'poor people'! We have certainly known sadness but have been amazed at the beauty and joy that exists here too. The show was really well done - and I think they did give a very accurate view of what this place is about.  I wish I could find on the web to share with you.  And to think, there are only six places like it in North America!

The week was great.  It was full. Dave had alot on his plate this week.  I was happy about seeing a few more people that I haven't seen all summer. (no exageration there) I wish I could have made it work to see more of you - thank-you for being patient with me!  I brought Ethan out to playschool, which he is loving! 

At the same time, we have had very real reminders this week of what this place - The Flames House - is really about.  We have met a little boy who has a brain tumour.  He loves to play with Ethan's train set.  I love watching him play and be 'loved on' by his parents. And it hurts at the same time.  And then we ourselves had a stark reminder with Rachel this afternoon.  We are fragile.  Life is short.

In hindsight now, we thought something was different yesterday with Rachel. She seemed more quiet, her smiles weaker.  On Sunday morning, one of the nurses told us that she had noticed a darker patch of skin - over her heart area.  But when I checked later in church, it was gone. Then it came back with her 'episode' this afternoon. The Doctor said this was probably a sign of de-oxygenated blood in the area.

I had napped all afternoon and when 'it' was happening, I wished I had spent the afternoon with her instead. I was so afraid that I had missed my chance for one more smile, one more cuddle. But I couldn't have known.  It took us all by surprise.  She had been doing so well all week. I am SO glad for all the cuddling we could have tonight.  Thank-you God for more time! 

This 'One Day at a time' takes on another meaning yet again. God, give us courage for what is ahead. ok, i'm going to try and sleep now.  I feel comforted knowing that some of you are praying for us during the night - if you are up with your kids etc...Thank-you:)

He gives us peace.

She's smiling again!

Rachel is so much more content these days!  She still eats small amounts at a time and then surprises us with one larger feed in the afternoon.  This makes life seem so much more do-able.  I even vacumed today.  wow.

A friend recently gave us a book called "Sleeping with Bread". It is based on a process called the examen.  I'm tired so I'm just going to copy their exact words.  "For many years, we have ended each day the same way.  We light a candle, become aware of God's loving presence, and take about five minutes of quiet while we each ask ourselves two questions.  For what moment today am I most grateful? For what moment today am I least grateful?" (there are different variations of the same questions too)  I haven't read a lot from the book yet but already, I think I really want to incorporate this practice into our lives.  
    
I am grateful for:
- Friends who watched all three kids so I could go to a Gym class
- Respite so I could sleep all Friday afternoon
- Surprise visit with soup and chocolate pie (same person watched my girls so I could run get Ethan from school)
- A thoughtful friend who picked out some clothes for Rachel at MCC (they are a bit big for now but she's still growing!)
- Friends who dropped by today with gifts for all of us, including a lasagna!
- The never stopping, never giving up, unbreaking, always and forever love of God (from our kids Bible story book)

It is official now.  We are back at the Flames House on Monday and we are staying until Sunday. (Dave says to ask you to please not break into our house while we're gone - oh Dave..) The best way to get hold of us is probably through email.  I took it off the blog because of spam issues.  But if you don't have our email, call our home number.  We will check it periodically.

Rachel is smiling more and laughing a little!  Here's a video of her tonight, just hamming it up...I wish I could capture one of her sweet, sparkly eyed smiles. We will keep trying! There is nothing quite like a baby smiling at you, is there?   

Thank-you!

Wow - I received so many responses to my last post - comments, and emails and calls. Thank-you so much! And thank-you for praying.  I know there are people praying as well who didn't send notes. I have had only one hand free for most of yesterday and today (Rachel needs alot of care) so I haven't been able to respond to you the way I would like.  I'm not that good at one handed typing.  But I wanted you to know that I have sensed your prayers and you have deeply encouraged me. 

I have loved hearing your stories. Please keep sharing them with me!  I may not respond right away but I read everything - sometimes crying, sometimes laughing as I read.  What a journey we are all on.  Some stories are so similar to our own.  These past few days, you have been reminding me of the goodness of God.  Your stories reminded me of this verse...

"He who goes out weeping, carrying seeds to sow, will return with songs of JOY, carrying sheaves with him." Psalm 126:6

I am feeling much better emotionally these days.  But feeding Rachel is such a full-time job that I still feel exhausted in every way. She is having so much trouble eating.  It seems like she is ferociously hungry and yet when I give her milk, she sucks once and pulls away and cries.  And then she fusses constantly, probably because she is hungry. (I'm guessing) It has been a battle just getting her to drink 10 mls at a time.  Yesterday I posted a note on FB asking you to pray because I just didn't know what to do for her.  Perhaps God was responding to your prayers....because in the afternoon, she suddenly drank 75 mls at one time!! This is virtually unheard of for her! It was a wonderful reprieve. 

She had a rough night (according to our respite worker) but fed ok.  Then today she was having trouble drinking again.  She finally gave us some smiles this evening, but they are more rare these days.  I miss them.  I want to know why eating is so difficult for her...and it is hard sometimes to wait for the answers we want.  She doesn't seem to be sick at all and this has been a problem for quite awhile already.  Is there anyone (with a child with heart issues) reading this who has faced feeding issues like this?
Thank-you so much for your prayers.     

Christmas Ornaments

I had a good cry today.  Maybe I cried because I am away from Rachel - these times often make me feel more vulnerable, more aware of how tied I am to my daughter.  They make me realize (in a small way) what it would be like to live life without her.  My heart has been stolen and there is no going back.  But I had better start at the beginning....

One of my faveorite ways to do "me time" is to go to Starbucks and Chapters.  I haven't done this since I was pregnant.  Today, I wandered around and wrote down a bunch of books I wanted to read.  (so that later I can reserve them at the Library) Then I got myself a mocha and settled down in our van to read and reflect.  I just started reading a book from a friend called "When God Wept" by Joni Eareckson Tada and Steven Estes.  You might remember that Joni became a quadrepeligic as a teenager.  If anyone has a right to speak of suffering, she does. She asks questions that have been the topic of many books, but somehow her writing connects with me in a way the others never have.  There is nothing 'glib' about her writing.  Who is God? Why does He permit so much heartache and pain?  Can He really be trusted?   

After reading for awhile, I decided last minute to wander around Michaels for a bit.  I usually end up near the yarn section (even though I already have a stash at home - some of you know what I mean!)  I chuckled a bit when I saw that all the Christmas stuff was already out.  And then I saw the little personalized tree ornaments... 

I pictured our kids hanging them on the tree.  I imagined Ethan and Abigail hanging one up for Rachel in the years to come, and suddenly it seemed so right.  Maybe she will be with us this Christmas.  I hope so!! Wouldn't that be so wonderful? In a way, she always will be.  And so I did something I normally don't do.  I splurged and bought three ornaments with each of their names.

And when I got to the van, I lost it.  I sobbed most of the way home.  I imagined Rachel as a little girl walking beside me, her hand in mine.  I imagined her precious grin in a toddler face and her arms around my neck.  And I allowed myself to really feel what I haven't in a long time. Disapointment. Sadness.  I thought of my friend whose little girl was delivered stillborn one year ago today. (in the same room where we waited for surgery) I hurt because right now, we have only glimpes of heaven.  And I want more than glimpses.        


I wish I could say that as the day went on, I moved out of the 'funk' I was in.  I wish I could end this with something hopeful.  But today was what it was.  I just felt plain sad today.  I felt anxious about the future and about things I am not free to write about.  I watched David run after the kids at the park and felt heavy with sadness.  I hate feeling this way.  Later on, we picked Rachel up at the Hospice.  They told us that during the night before, Rachel was having trouble feeding again.  Only 10mls at a time and every hour.  But she is in my arms again and tonight we are all under one roof, and that feels right. 
And tomorrow is a new day. And God says that His mercies are new every morning....(wait, I guess I am ending with something hopeful afterall.  God has a way of doing that, reminding me of who He is and what is still True, despite how I feel.  Thank-you.)

My Soul Finds Rest

My soul finds rest in God alone;

my salvation comes from him.

He alone is my rock and my salvation;

he is my fortress, I will never be shaken.

Psalm 62:1,2

A Good Day

Yesterday the Hospice called to ask if we wanted to bring Rachel over for the weekend!  The weekend felt too long for me to be away from her and we did have respite lined up for Saturday night.  So I brought her in yesterday at 5pm and picked her up today at 5:30pm.  It felt strange leaving her there and driving the 30 minutes home.  But as I was leaving, one of the nurses said "She is like a daughter to us.  We love her too".  What an incredible place!

Dave was away at an Elder Board Retreat.  We hadn't asked around for a sitter and I really needed some rest so I didn't join them this time. Instead, I took the kids to McD's and let them run off energy and then I went to bed at 9:45! (after all the calls for water, extra bathroom trips, etc..)  This morning was so wonderful.  The house is still such a disaster (huge understatement!) but I danced with my kids to music and I held Abigail on my lap for a long time. I could tell that they had really missed my attention.  We went to a park this morning and I ran up the hill with them and watched them play.  We went grocery shopping and then came home for a nap.  I slept for three hours!! Dave came home and I went alone to get Rachel.

Rachel is doing so much better!! She has been doing her regular 35 - 40 ml feeds again! It feels so good to know that her tummy is full.  She is so much more content.  The staff at the Hospice were giving her tummy time and they said she was doing so well.  They even think she was trying to move forward by lifting her bum up and down!  There was another little boy at the House (three months old) to play with.  So she probably didn't miss us at all!

We are planning to bring her there again tomorrow night! This way, we will also have most of Monday to do something special with Abigail and Ethan.  Thank-you God for such a Beautiful day!