"He shall feed his flock like a shepherd: he shall gather the lambs with his arm,
and carry them close to his heart, and shall gently lead those that are with young." Isaiah 40:11

Friday, July 9, 2010

Seven Weeks

This morning, Dave took the older two to the Stampede Parade.  They had a great time. I, however, spent the entire morning pacing the living room floor with a fussy baby.  Yeah, I'm still a bit grumpy about that but I'll get over it.  It seems wrong somehow to feel hard done by, when Rachel is only here for a short time.  And yet that is how things are - it's tough and exhausting.  I feel just as helpless in knowing how to help her as I did with my older two when they were babies. 

By the way, after my last post, we have received lots of offers for babysitting.  Wow - we feel so blessed by such wonderful friendships in our lives.  Thank-you.  Several days ago, we  asked if we could return to the Hospice for a few days respite and we just received word that we are very welcome to stay there from Wednesday to Saturday of next week!! We are really  looking forward to it!


 This afternoon, Dave and I and Rachel headed off for her apointment with the Cardiologist.  First, we had a chat about how things were going with Rachel.  A nurse checked her oxygen levels and heart rate.  Her oxygen levels are about the same as last time.  Her color is still good.  And we weighed her for the first time in two weeks.....and she's heavier than her birth weight!!! She is 5 pounds, which means she gained 12 ounces in two weeks. I was thinking she seemed a bit heavier to carry. 


Then we did the echocardiogram.  Rachel was a perfect angel and lay really still for the echocardiagram - the warm blanket probably felt great.  The last time she had an echo was just after birth so we were pretty curious about what we might find out.  We didn't expect anything too different because Rachel is still doing so well - she only has minimal blueness etc.. But there was something different.  Dr. Fruitman was not able to find one of the heart arteries or the curly veins (it may just have been a bad time) but the real difference was in the right heart artery.  She pointed it out on the screen.  There was a definite narrowing, like it was pinched.  She expects that either the same thing is happening on the other artery she can't see, or it is still open.


Later, she showed us the two echo videos side by side, the one at birth and the one today. She showed us how the blood flow has greatly decreased and how the flow through the right artery had changed.  This was surprising for us.  We're not sure how to feel about it.  I think I might feel a little more on edge, like something might happen.  And yet, our Cardiologist said that she may yet keep living for awhile - and there's no way to determine how long.  Even if the right artery (that she couldn't see) was actually closed, it is still possible for her to live with blood flow to only one lung and at dimished capacity for some time. 


It really is amazing how her heart has compensated for itself. (it is a kind of sad amazement) And because of the diminished blood flow, there is less energy expended in making her heart pump etc.. so she is able to use more energy to eat and grow.  And because she can eat more, her oxygen carrying ablities are higher as well.  (and she doesn't turn blue) At least that's how I remember it being explained.  summary: So while she seems to look better, her heart is really doing more poorly than it was at birth. The real question is how long the arteries will stay open.  The answer: unknown.   

ok - I have used up all my brain power for today.  Thank-you for your continued prayers for us and Rachel.
Abigail hugging the big green dragon at the Parade today 
Dave, what happened to her cowboy hat? :D

9 comments:

patti said...

*Hugs* It sounds like a hard day! I'm sure it's hard staying back when the rest are having fun. And with Rachel appearing to improve, I can see the dr appointment might have been a little shocking and a little "I'm not sure what to do with this info". The picture of Abigail hugging the green dragon is cute. I'm guessing Dave is perfectly happy if Abigail isn't wearing a cowboy hat, despite it being Cow Town and Stampede week. :)

Brenda Funk said...

So very glad you can go to the hospice next week! Love MOM

Janet said...

I'm sure you do have mixed feelings.But Praise God you are able to continue to share Rachel's life with us.Even through all your tiredness you keep us all up to date,Thankyou for doing that.It lets us all know what to pray for.
The Hospise will be good for you both.You will beable to have a peace of mind when you go to sleep.Rachel will be in care 24/7.Amen!
Abigail that green dragon sure is big beside you :)
Love you all
Janet M

Arlene said...

I have never met you but know of you though my great neighbors Levi and Wilma. My heart goes out to you and your family. I have gotten to know you and your family though your Blog. I pray for you and your family daily. I do not know the what it is like to have a child so sick. I only know what it is like to lose a husband and also my father before their time. You have great strength and I admire you for that. I feel all that you feel even though I have never met you. Your words are a great inspiration for all around you. We may not know what you are going though but know in our hearts that you need us to be there for you and your family. I don't know you but are here if you need anything.
Always Arlene

Kathy and Carl said...

It's good to hear that Ethan and Abigail had a good time at the parade. And what a wonderful blessing for you all to be able to go to the hospice for a few days. You need the rest and the support. We don't have a day that goes by where we don't think and pray for you.

bkneufeld said...

So often we wish we could know the future - as if knowing it would make it easier to bear...I think God knows best and we are invited to put all our trust in Him so that He can carry us and show us His profound love. Thank you for being so transparent in your faith and showing us that in the midst of such incredible suffering how God is carrying you and providing for your needs. Beautiful family pictures you will always treasure. Love you and praying for you!

fiona said...

kendra and dave, what beautiful family pictures!! what a treasure :D kendra, i feel sad too . . . can't help but cry when i hear about how you are all coping with a sick little girl and hearing how her heart is slowly allowing her body to get less oxygen. won't heaven be so marvelous for us all? no more sickness, pain or death . . . dear jesus we can't wait!! may you continue to have supernatural strength and may God grant you rest and sleep too :) we love you so much and pray for you all every day, often numerous times each day . . .

Laura said...

Praying for your precious family. Kiss Rachel for me and whisper and I love you in her ear.

Faith and Mark said...

We were happy to have the kids (and Dave) at the parade with us. I love watching their faces. The family pictures are beautiful!! We continue to pray for you.