Thrown for a Loop

A few days ago we went to a BBQ at the Hospice for the Hope group.  We had a great time.  I have really enjoyed getting to know this group of people.  Hearing their stories makes us feel less alone.  Although there are still many differences in our stories we feel at home with our new friends.  These are people who know and are learning what it means to live day by day.  The kids had a Great time too.  Firefighters came with two trucks - they raised and lowered the ladder, the kids could climb in and out of the trucks...and they could play with "Sparky" (guy in dalmation costume).


While we were there, we decided to get Rachel's oxygen level tested.  You may remember about 2 weeks ago, it was in the 50 percentiles.  It was 70% that day!  This threw us for a bit of a loop.  It seems confusing to us - just when we think we know what is happening, something changes.  Dave later talked to one of the Palliative Care Doctors at the BBQ and she reminded us that the arteries are still closing (as seen on the last echo) and there can be fluctuations.  I have noticed that her feet seem pinker these days - they seemed very purple before.  Again, another reminder that we can't predict from day to day, week to week however much we would like to do so. 

One of the moms at the BBQ made a few comments that have stuck with me.  She said that one day when her older girls look back at these days and they talk of the sad times, she will remind them of all the things they got to experience because of their brother's life.  Rachel's life may be short but our family has also experienced many things that we would not have otherwise! On days like this, I feel blessed.  Rachel has made our lives richer and more beautiful.  And isn't it wonderful - the only touch that Rachel has known has been of love? She feels our loving touch and hears the happy sounds of play from her brother and sister and they know and love her! I often think of how we will hurt when she is gone and I forget the gifts that Rachel (and ultimately God) is giving us too.  But there are many..

....for all these gifts, we thank you God!!!  "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17

Grandparents

These are some more pictures done by Now I Lay Me Down to Sleep.  We have been thinking of our parents lately and how hard it must be to be so far away and busy with harvest (the sad amount that it is this year) and to miss Rachel's smiles and be able to hold her.  I would be very glad if some of you reading this would go and give them a hug and let them know you are thinking of them too.  Thank-you.

I think these are auntie Val's hands? She's the only one of the siblings to get her picture with Rachel.  (Everyone had to wait around for most of the day in the cafeteria/elsewhere and Val had her little boy with her too - and we never did get pictures taken with them.  What a crazy morning it was!) We are so glad for the effort you made to be there for us that day!

Plett Grandparents

Funk Grandparents

Random things

Pictures can really be deceiving, can't they?  You don't even need photoshop sometimes. I say this because the pictures I recently added to the blog don't really give an accurate picture of her size.  Even I am surprised at how she looks like a healthy (even a bit chubby) baby in the pictures.  If you want an idea for Rachel's size - keep thinking 'doll'.  Just to give you an idea:  I had to measure her arms for my Grandma to sew her a dress and my mom didn't even believe me!  The circumference of her arm is 9 1/2 cm.  I can wrap my index finger around the thickest part of her arm and easily touch the base of my thumb.  See what I mean?  I'll try and add some pictures that give a more accurate perspective.

Something I haven't mentioned earlier:  While we were at the Flames House, some of the staff (nurses, doctors) had a theory about Rachel's coughing.  I wish I could remember what they said - I was a bit distracted with our kids that day.  But I think the gist of it was that maybe she was coughing because of her lower oxygen levels and the need to get more air in?  I'll have to ask again about that.  She usually coughs after she wakes up from a nap and sometimes during a feed.

Rachel is also sleeping longer stretches and......She now seems to have a more distinct night and day sleep pattern - something I thought might never happen.  This means we are sleeping a bit more altogether.  Yay!

We continue to be amazed at people's generosity.  We picked up more food from the church freezer just before our time at the cabin.  THANK-YOU.  A friend dropped off some beans from her garden and our neighbor cut them for us.  (I love beans - unfortunately my family doesn't.)  Friends watched our kids tonight so Dave and I could go to Nose Hill park for a walk.  More friends are watching the two older kids on Thursday night too.  I've gotten lots of encouraging emails/cards! I could go on and on. 

We also received some pictures in the mail from a photographer with "Now I Lay Me Down to Sleep"*.  They were taken the day after Rachel was born.  Our parents were both there that day (as well as most siblings) and at the time we thought we might have a very short time with her.  The pictures are amazing.  I don't know how she got such good shots on such a chaotic morning in such a small room. (doctors and nurses coming in and out etc..) They are all good - I can't decide which ones to put here.  More to follow later...

*NILMDTS photograhers volunteer their time/services to take pictures of babies who are expected to die shortly after birth. Here is their website if you want to know more. http://www.nowilaymedowntosleep.org/home/

May 22, 2010

Back from the Cabin

We are back from our week at Buffalo Lake!  It wasn't exactly beach weather like we had hoped but we still had a good time together.  We spent alot of time trading each other off during the night and for naps.  Rachel smiled alot this past week - she is really responding to us!!.  We had a little birthday party for Abigail with our friends that own the cabin (and some other friends too). Near the end of the week Dave noticed something funny happening with the engine of our van.  So one morning Dave took off to Stettler to get someone to take a look at it.  I felt a little nervous watching him drive off knowing that if something happened we would have no way of contacting each other.  But Rachel is still doing fine.  And the van is fine too - we had to replace an ignition coil.  Thankfully it wasn't more than that.        

Rachel is having a terrible time with gas and pooping - poor girl. Rachel's feeds still go badly sometimes - she cries for a long time, obviously hungry but she doesn't drink.  We're still trying to figure out the right consistency of formula to rice milk* so she doesn't gag when it flows too fast, but it can't be too thick or she has too hard of a time sucking it out of the bottle.  But for some reason, Dave has this knack of getting her to drink when I can't.  It is really remarkable (and annoying;) ).

It's good to be home again!  One more week of holidays. 

*the rice milk is suppossed to help her keep her milk down but she still seems to have alot of reflux.  Hoping a prescription drug will help with that soon.

A blurry picture but a great smile!

Abigail's Third Birthday

Abigail making Rachel smile

Two beautiful Dresses

Dress made with Love by Great-Grandma Kornelsen

oh my!

It fits! This dress was bought with Love by Grandma Funk. 

Rachel's Smile

Smiles at Twelve Weeks Old!

We captured a smile today!  She is not sleeping in the second picture - it's an honest to goodness smile!! We love you Rachel!

That tickles Daddy!!

Home Again

We are back at home.  I (Kendra) seem to be coming down with some kind of stomach flu - yuck. Reminds me again how hard it was to be pregnant.  Rachel has had some trouble drinking again - some gagging and coughing.  But she's sleeping well right now.  This morning we had another apointment with our Cardiologist.  We also did another echo.  (the last time was 5 wks ago)  It looks like the artery we saw last time has narrowed a bit more.  The second artery (which we couldn't find last time) also looks like it has narrowed.  Her oxygen level was also a bit lower - they were in the 50's this time.  Until now they have usually been in the mid 60's. This is tough.  No matter how we try to be prepared for this, it is hard to hear.  I have been feeling more anxious these days, more heaviness.  Thank-you for praying for us.


We are going ahead with our vacation plans.  We're going to a friend's cabin on Buffalo Lake for the week.  (leaving on Sunday) Rachel's doctor said a week likely won't make a big difference, judging by the rate of narrowing so far.  I still feel a bit nervous anyway.  We will be 2 1/2 hrs away.  But not nervous enough not to go:)  I think it will be good for all of us to get away for a bit and enjoy the outdoors.  We go well stocked with meat to BBQ from our church family!  Thank-you! 


Rachel has been giving us lots of 'real' smiles.  But no pictures yet!! I promise to post one as soon as I can. We will be away from the computer for awhile though.  Here are a few of my faveorite pictures from our last stay at the Hospice. These were taken by various staff. 

Smiles!!!!

I'm an extremely happy dad (yes, this is David).  At lunch today as I was holding Rachel she smiled at me while she was awake!  And not just once but a bunch of times, in that "i'm just learning how to use my smile muscles" hesitant kind of way.  We've seen her smile in her sleep before but never consciously like this.

I've been glowing ever since.  It is one thing to have a baby whom one loves.  It feels like another to have this baby consciously respond to you, to be granted a heart-stopping baby grin in response to your affection.  It's a great start to our holidays!

Speaking of which, to kick off our holidays together we took Ethan and Abigail to see Toy Story 3 in the theatre and then went out to eat at Peter's Drive In.  The kids were hardly able to watch the movie and keep their hearts beating and lungs breathing at the same time, they were so engrossed.  We had a great time!

Shalom,
David and Kendra, Rachel and Abigail and Ethan

ps - (This is Kendra now) This evening Rachel lifted both her arms above her head and yawned.  It was so priceless!! Also, we have started adding a bit of rice cereal to her milk to thicken it. (along with prune juice for constipation) The rice cereal seems to lessen her reflux and it slows down the flow so that she doesn't gag as much.  Saturday night to Sunday morning we were actually quite concerned because she was only able to drink 20 mls the whole night!! (lots of gagging) and slept about one hour.  So far it seems to be helping.  We'll see...Her eyelashes are also super long.  A nurse from the Cardiac ward said she has noticed that cardiac babies seem to have long lashes. 

Blessed are you

Looking at his disciples, he said: “Blessed are you who are poor, for yours is the kingdom of God. Blessed are you who hunger now, for you will be satisfied. Blessed are you who weep now, for you will laugh.” Luke 6:20-21

(on the letter from a friend who knew 6 of the 8 medical aid workers recently shot and killed in Afghanistan)

Struck down but not Destroyed

I want to share a story with you that someone shared with me. I am so moved by their trust in God.  If you get a chance, click on these links. (and have kleenex ready)  
Daisy's story
Their blog

This morning in church there was a free sharing time of how God has proved his faithfulness to us.  There is no other place I would have wanted to be today. There are so many ways to suffer in this life.  And there are so many ways that God is still Good.  It reminded me of the verses on the blog I just shared with you.  It reminded me of the HOPE we have.  We feel destroyed but God promises that we will not be.  Beauty is rising from the ashes.  He brings new life from what seems to be dying.  He will work good even from the worst pain.  He will keep His promises.   

A Verse from Friends

"Whoever welcomes one of these little children in my name welcomes me; and whoever welcomes me does not welcome me but the one who sent me."  - Jesus 

11 Weeks and a Day

Dave went to a walk-in clinic yesterday because his cold has been hanging around for a long time and we thought he should get it checked out.  (many children that come into the Hospice have comprimised immune systems) He told me that at first the Doctor was sympathetic when he told her about Rachel.  But then she decided (very foolishly) to say that when she sees people in our situation during pregnancy, she advises them to have abortions.  She said that it is too disruptive to people's lives to carry the baby to term and face all the challenges of having a sick child.  Did she actually say that out loud?? To a parent who obviously has chosen not to abort their child?  Was she thinking that we would agree with her?  Or even want such advice?  It was really hard for me not to feel irked about this.  In fact, I felt dowright angry.  I realize that not everyone will agree with our choices but this was really inappropriate. 


And another thing - If Dave gets hit by a car and it leaves him a quadrapeligic tomorrow, should I leave him because it is too disruptive to my life? What if Ethan develops severe life threatening Crohn's Disease? That's a disruption.  Does his life then hold less value than that of a healthy child? 

The path we are on with Rachel is not easy.  It is very hard.  But we have no regrets.  All I have to do is look at my beautiful daughter's face and know that I am glad to know her.  That I am blessed to know her even for a short while.  Glad for the learning that can only come from 'disruptions' and difficulties in our lives.  That poor doctor doesn't understand this... 


But, on another note....We are enjoying our stay at the Hospice.  It is wonderful to be able to sleep all night.  And Dave has managed to get his work done, despite a cold.  When he was not working, we did a few trips out together.  This morning we took the older two out to Prince's Island Park.  A few days ago, the whole House went to Heritage Park together.  Dave took the kids and another mom's son on the Steam Train.  Last Tuesday I took all three kids to Bingo at the Children's Hospital.  There were alot of  amazing prizes and they make sure that all the kids win at least something.  Ethan and Abigail both won (it was a bit challenging keeping an eye on both their cards and a fussy Rachel at the same time).  Of course they had to go and pick largest, noisiest, plastic toys!  

Ethan has watched the STARS helicopter come in a few times as well.  It is interesting to watch but I feel sadness watching it too.  This morning, I found myself crying as we watched it come down.  Sometimes it seems that healthy children are the rarity and that it is impossible for children to live long accident free lives.  Sometimes it feels overwelming to hear everyone's stories.  At the same time, by hearing their stories it causes me to "SEE" them and their children in a different light.  I can't explain it. But I am glad to hear them and to know these people.       


I can't help thinking too of all the women in our world who watch their children die, of hunger, in war, or of sickness...Our story is not unusual.  Rachel is not the only baby to die.  These women don't have blogs or write books.  They don't have Hospices or havens to shelter them.  But God sees them.  And He has compassion on them. Let's not forget them!


Rachel is staying steady at mid 60% oxygen levels.  Something new is that she is playing with her hands now.  They don't open up fully and some are crooked but she still manages to get a thumb into her mouth sometimes.  She is still drinking small amounts.  She is still coughing and throwing up after a feed.  (which also means more frequent feeds)  We were told that we can stay at the Hospice until next Thursday.            

Lord have mercy

I was looking back at my journal today and I found this entry on September 21st - exactly 8 months before Rachel was born! I'm remembering that day and how I felt so helpless to the tide of events - how I knew that anything could happen.  Somehow I had an inkling even then of something coming, something that God had been preparing me for.  I am remembering today of how God was faithful.  He was merciful, not quite in the way I asked or hoped.  But He still was.  He got me/us through that long time of waiting. 


Here's what I wrote on September 21, 2009:
"We're pregnant. Just did a test this morning.  I think I'm still shaking...with trepidation, fear of all the myriad things that could go wrong and all the things I've known already.  Nasea, exhaustion, getting big and sluggish again, exhaustion because I have two children who wear me out somedays when I'm not pregnant.  God help me!  Help me to face each day with courage, stamina, patience.  Protect and grow this little life.  Because already I feel a fierce kind of desire to protect this little one.  Lord have mercy on us. "


It is good to remember His faithfulness.  And He says. "Can a woman forget her nursing child, or show no compassion for the child of her womb? Even these may forget, yet I will not forget you." (Isaiah 49:15)Just as I love my children with a fierce protective love, God loves us and infinetely more!