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!