"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

Thursday, September 30, 2010

Feeds, Doctors, and Sunsets

Where to start? I have had alot of ideas today of what I wanted to write but I know that realistically speaking, there is only time to stick to the bare bones.  We are tired.  And worn.  It surprises me that it's still been such a tough week because the nights are fantastic! We are starting to recover physically because we have now had respite for three nights now!  I am finally getting over my cold.  The paperwork however, is a big headache.  We are really looking forward to having this stuff worked out soon.  Dave and I have had time (barely) to talk about only the things that absolutely have to get done.  I am so thankful that Dave has been able to spend several hours on figuring out payroll today. (including several phone calls to other families who are experienced in this). I just can't seem to wrap my brain around numbers and tax forms when I feel like the house is still crashing down around me.   

Feedings have not gone well lately.  She is finally resting but for most of the day, she has needed to eat every hour and often every 15 minutes.  She sucks, then pulls away and cries.  She ate roughly between 5 - 15 ml each feeding.  Then we reheat the milk and try again.  Feeding Rachel is definetly a full-time job. We are hoping this is just because of her cold and that things change soon.  Tricia, you asked about a feeding tube.  I think that this is something we would do only if absolutely necessary. That's my understanding anyway.  We are planning to try a medication for reflux - she may be having pain with swallowing because of this.  It will take about 5 days before we might notice a real difference.   

This morning we had an apointment at the Children's- with our Cardiologist, a Pediatrician, a Nutritionist, and a nurse in Cardiology.  I wish you could have seen that room - and how these people respond and light up around Rachel.  Rachel was wooing everyone with her smiles.  She was so awake and happy. (I wish that had carried over into the rest of the day!) We talked about alot of things....Here's a summary:

1. We haven't heard back from Toronto yet.  We sent off the echos for another opinion on her heart.  He may want more tests to be done, possibly an MRI.  One was done in utero, but it was hard to get good images.  We have hestitated on doing another one because it involves sedation and an IV. Her hands are so tiny and overall, she has seemed so fragile.  We still don't know if the benefits are worth it, but we are leaning more towards doing it now simply because we are curious to know more about her heart and what it might do in the future.  One option to try first is to wrap her very tightly and hope she doesn't move.  We might try this first.  However, she would still need the IV.

2. Some of you might find this interesting:  Edmonton is rated one of the best centres for heart surgery in the world.  Toronto and Boston are on par surgically speaking.  Our Doctor has practised in Toronto and I understood that she had also done some work in Boston - she is very familiar with both centres.   And there are  few places in Canada and even the world that have a place like the Children's Hospital here in Calgary.  We feel very fortunate to have such great care. 

3. We discussed her diet at length - trying to figure out ways to help her go longer between feeds. There doesn't seem to be one right now. Please ask God to give us endurance. This is the one thing that is the most discouraging for us right now.  

4. Rachel is now 6 lbs and 6 ounces!  And....drumroll please...her oxygen levels are 79%! She was 78% at birth. The only guess is that the collateral arteries that have been closing - have caused other ones to open up.  If that confuses you, you are not the only one.  But feel free to ask me more about that.

5. Some of you have asked, "Why don't we give her oxygen? Would this not help her to grow and develop to her full mental and physical capacity?" This is a good question.  Our Doctor had a much longer and more detailed answer for this but basically this is what she said (I think!) : Her heart is mixing oxygenated and de-oxygenated blood. Giving more oxygen would not make much difference in this case,as it would just become mixed again.  Also, whatever developmental differences she has now, have been there from the start - and not because of lack of oxygen.     

6.  We were strongly advised to get flu shots, particularly Rachel.  They are especially concerned about a certain virus - ahh, what is the name now?? and it usually surfaces in December.  They say that if Rachel gets this virus, she will get very very sick.  Most of us just get sick - we hate it - but we get over it.  I already know 4 children in Hospital (with underlying problems) because they have caught a virus.  For them, a virus can mean death.  Please pray for these families, and us as we enter the flu season. That reminds me.  Ryder, the little boy I asked you to pray for, is home again.  He was in Hospital because he caught a virus.  He is okay now but the family is nervous about flu season.  They feel like they are living in a bubble. 

The Wailin Jennys song I added to the blog player is in honor of a dear friend who stopped by here on the way to B.C.  Paul and Sandi Mutch, I am so glad you could meet Rachel for a little bit.  And celebrate your birthday! Glad too that we could see their pictures of their recent trip to South America.  I have no words for the beauty of what they saw.  Absolutely incredible. This world still holds so much beauty. 

Last night I saw something that literally took my breath away.  I had been feeling down - after a certain conversation I had just had, and I was driving away from Superstore when I turned my head to check for traffic - and then I saw the sky.  If you could hear my inner thoughts, it would be a Gasp (almost painful for the beauty of it). I wanted to stay right there in the middle of the road.  I felt the most incredible sense of wonder - it was as if the curtains were pulled back and I could see heaven.  It was pure agony to turn and face in the other direction - and drive towards the darkness. 

This reminded me of a book called "A Grace Disguised"that I read not long ago. It was written by a man who had lost his wife and mother and daughter in one car accident.   He dreams of a setting sun and desperate to escape the coming darkness, he runs west trying to capture the sun's warmth and light.  Later he learned of a poem (through a friend) by John Donne - and it points to the fact that though east and west appear as opposites, if we follow one or the other long enough and far enough - they do in time, come together

He writes, "Later my sister Diane, told me that the quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise...Since I knew that darkness was inevitable and unavoidable, I decided from that point on to walk into the darkness rather than try to outrun it, to let my experience of loss take me on a journey wherever it would lead...I chose to turn toward the pain, however falteringly, and to yield to the loss, though I had no idea at the time what that would mean..."

Ha!! So much for sticking to bare bones! I want to write more but I hope that encourages someone to go pick up the book and read it for themselves!  Good-night!


Tricia said...

Hey there! Regarding the feeding...I am assuming you guys are leaning towards least invasive in all areas of Rachael's care but I am wondering to aid in everyone's comfort what about an ng tube being used for feeding with a pump and say doing a slow continuous feed overnight and bottle feeding during the day with the feeding tube used if she does not meet the required volume?
Also, I have a few new sleepers for that very precious baby

Sharon said...

Thanks for the overview and keeping your loyal readers ;) up to speed. Love the way your you-ness shines through in your writing.

I'm amazed you're still doing regular things like going to superstore. (It takes me days to convince myself to go to the store to pick up a few items). You deserve to be rewarded with gasp-inducing awesome beauty.

As always, you are in my prayers my dear friend. <3

annamarie said...

Thank you for this update. Kendra, I have no words to describe the joy in reading this...I know you will find the medical answers you need and perhaps new windows will open that you could have never imagined. That is the miracle of children. Always surprising us! A couple things: Know you are not alone at ALL with feeding struggles. They are the hallmark of heart babies - and it is hard to watch them struggle to eat. I'll pray this starts improving for you guys. 1) While she is tiny and fragile, I am certain she can sustain the IV and diagnostics should Toronto recommend. Anything that pokes or pains your baby is torture for us as parents. I know she has been wrapped in warmth since her arrival. Just know the doctors and nurses really do have tools to make it as easy as possible for them!

2) Sound like you have an awesome doctor that has experience at some of the best peds heart hospitals in the world. How wonderful!!

3) Hang in there...feedings are a roller coaster. I know it will get better.

4) Awesome sats for her!! It is confusing, but the heart works in amazing recuperative ways sometimes. Let us know if you learn more from the next echo (and/or MRI)

5)Thanks for explaining that on O2. I'm sure your physicians are giving you wise counsel and would recommend more O2 as needed.

6) Here's the thing you are referring to: RSV. The shot they give to heart kids is Synagis (spelling??) It was completely non-negotiable for our cardiologist during Eve's first winter/spring. The risks are too great. If it helps, I have yet to hear of any baby that has any negative reaction to it. The flu shot is more arbitrary, I think. If your child is not exposed to alot of other people or kids, you might be OK...but your physicians might think it's important if she will be in hospital settings and possibly be exposed to whatever yucky stuff is on it's way this winter. As you point out you know kids who have gotten these viruses - and with heart struggles they simply can't fight it. Praying for those families.

PLEASE KNOW that you continue to be in our thoughts and prayers. I am always available...if you need anything. phone, email, whatever. Every blessing, Annamarie

PS sorry it's been so long. Was working round the clock to get universal screening for heart disease in newborns federally recommended here in the U.S. It's done!!

paige said...

i saw that in Calgary's sky too. i know *exactly* what you are talking about. It was like an invitation to worship...

Brenda Funk said...

Not sure what to say...just that I feel for you, with the whole mix of emotions that you experience every day -- and right now, the 'looking ahead' can seem overwhelming, even while you cheer Rachel on as she does better than anyone had ever anticipated. Praying for daily strength to go on, and that the figuring out part of your respite care will soon be done with. Love MOM

Valerie Ruth said...

i'm cheering for you

fiona said...

kendra - i marvel that you are able to write so coherently, with such detail and grace, when you must be so tired and i am certain staring at a house that must often look like a tornado raced through . . . i find i can barely keep up with my email - your willingness to allow us to be part of this journey is such a gift. i will pray fervently that rachel be protected by the hand of God from viruses.

your thoughts on darkness and having to run towards it rather than away from it reminds me of some of the teaching i have received on healing prayer. so often we have to 'sit' in our emotional pain before God can release us from the bondage of it. i don't think your situation is in any way the same, but for some reason running away (like jonah found out) doesn't bring us closer to what we long for. even if i think of labour and delivery. there came a point when i had to be willing for the pain to get worse before it would get better. well - i hope i am not stretching this analogy too much here, but you've got me thinking - as you so often do :D

i love you kendra!!!!!!!!!!!

ps. remember jen elderidge from dasch? red hair? she is going through her own pregnancy and childbearing pain. she just lost a twin in-utero, and is being told there may be trouble with the living baby as well . . . if you ever think of her, pray that she would experience the love of God in all of this. that sounds like an oxymoron i know . . . ok good night to you too

Kathy and Carl said...

Thank you for taking the time to share how things are going, despite feeling tired and discouraged. Paperwork, feedings, sigh....lots to keep you feeling like your head is just barely above water.

But praise God for the gift of that beautiful sky and Paul and Sandi's visit.

I can't imagine how hard it is to plunge into the darkness for the hope of light in the future. It's really letting go of everything and trusting. I'm going to try and get my hands on that book.

We continually keep you in our prayers. The kids are always asking about the sweet tiny baby and her family.

Anonymous said...

I really think there should be help for paperwork for parents of children with special needs. I have heard SO many parents comment on what a stress it is. While i'm sure it is such a gift to get finacial support for respite, I still wish there were a way for someone else to deal with the formalities of it all, or at least provide some kind of support/guidance. That said, i'm glad to hear rachael is doing so well and that you have people to help take care of her! What a relief that must be!

Faith and Mark said...

Yay for the Cardiologists in Calgary. We loved ours and always found them so helpful when we were overwhelmed. I'm glad you are having the same experience with yours.

Stephanie Kilbride said...

Found you through 1in100's post on facebook tonight. I couldn't believe we have cardiologists in the same clinic at ACH!

Our daughter had open heart surgery in Edmonton. I would ask for an opinion from Dr. Ivan Rebeyka unless going to Toronto feels right... he is an incredible man and surgeon.

I personally know how hard this decision is and we are holding you all close to our hearts.