Monday, 16 April 2012

Running on Empty

Well, it's Monday and it's a new week.  And, in our world, that translates into a new rotation of staff, with different neonatologists, different cardiologists, different nurse practitioners, different nurses, different respiratory therapists, different social workers and, last but not least, a different surgeon!!  And....along with those different neonatologists, cardiologists, N.P.'s, nurses, R.T's and surgeon are a totally new set of protocols, methods for procedures, preferences for treatment and criterion for pending surgery.  Today, was a learning curve for what this new set of staff means when it comes to a date for Hope's upcoming surgery.  

The day began with Hope's I.V. lines collapsing again and requiring immediate intervention.  Since the only way she is able to receive nourishment, fluids, sedation and her critical medication that is keeping her alive at this point, is intervenously, it is imperative that they have at least 2 lines in at all times and working well.  Finding a good vein is a challenge and poor Hope has had her hands, arms, feet and head poked on numerous occasions, all in search of a good vein.  Today, 6 different people tried a total of 14 times before someone was successful at getting an IV in Hope's foot.  As a mom, this is pure torture to watch and I often have to look away as I sing to her and hold her head while she cries with no sound.  A PICC line (central line) would be the route to go but because she got her infection from the central line in her umbilicus, they are hesitant to do this until she's in the OR.  

Today I would have made my Grandma Kirk proud.  She has always been great at advocating for what she or her family needs and making sure you hear her.  We are so tired of being told something different by every doctor that comes by.  I finally had enough of that today and had a bit of an emotional meltdown.  I seem to have kicked up a bit of dirt in the NICU today and by the time we left, every doctor knew that we were DONE and wanted some real answers.  So, after tracking down the surgeon, we were told that surgery is on the schedule for Wednesday morning.  This was not what we had hoped to hear and we're not happy with the longer wait, but unfortunately we don't get a lot of say in this matter.  Please pray that Hope stays infection free over the next 36 hours to be sure we don't make this journey any longer.  

We were told today that the surgeon is not on the OR schedule for tomorrow.  If he gets some OR time, we're praying that Hope would be his first priority.  Shawn, my mom and I are all at our wits end with this waiting game and the run around of information.  I spent the majority of the day in tears and I have a feeling that will continue for the rest of this week.  Shawn is going stir crazy and seriously needs to play a game of soccer or ultimate frisbee, if anyone from Edmonton likes organizing that sort of thing...he would LOVE to attend!  I wish I had the energy at the end of the day to hit the gym and get some good endorphins going through my body.  Sadly, at the end of the day I feel like talking to no one, sitting in our room and eating!  Not sure how well that's going to work for my post baby body, but I don't have the ambition to care at this point.  Maybe a personal trainer can start working with me when I get back to Calgary :) .  

We're going to try to take some time away from the NICU tomorrow, we know that surgery isn't going to happen and we need the break.  Shawn is hoping to go for a long bike ride on his own and I'm hoping to get some sleep so I can pull myself together emotionally.  We really appreciate the cards that have been sent to the house here, thank you to everyone that has sent those.  One day when my life is less exciting, I would love to sit down and thank you all personally!  Thank you for standing with us, even on the hard days when we're really down and feeling really negative.  


  1. My sister and mom started reading your blogs today, and joined with me crying, as our hearts go out to you and everyone involved. Praying for you my friend...and whenever you are ready, I would love to have you join me in workouts. You just let me know <3


  2. Your incredible Amy! I am in awe of your strength and courage! You make moms everywhere realize that we are our children's heros! I pray that when hope is older and your life begins to calm down you are able to share with her how brave she is being and how you fought for her life as much as she did.. I pray this journey will take a better turn for you and you get closer to that day! You can do this you are amazing..

  3. Amy and family,
    I have been reading about Hope for as long as Lindsay has had a link on her facebook about her. My heart goes out to you guys, but mostly my prayers. I have my ladies Bible Study group in Burlington praying for you and we will be praying together again tomorrow morning. May the God of peace comfort you and give you patience, clarity and blessings beyond measure in the days to come.

    Sarah (Schofield)Vander Munnik

  4. Praying for your girl, and for you guys.
    We have too walked with the Lord through devastation with our wee girl not long ago.
    Where you end, God begins. He will give you what you need to get through each day.
    You are absolutely right on to fight everyone you need to for your wee girl. I will pray for God to work in the hearts and minds of the medical professionals and that Hope we be getting her surgery ASAP.

  5. Ann (McLean) Martin16 April 2012 at 21:47

    I am a friend of your mom's from the 'olden' days back in Sarnia. I am praying for your precious little Hope. May God wrap you in His peace and love as you wait for this surgery to happen.

    Lovingly, Ann

  6. Dear Amy
    I am an old friend of your mother's from Burlington. We are so disheartened to hear of the continual frustration you are facing in the hospital. I wish we could be there to advocate on your behalf. That is wise to gather strength physically and emotionally to keep fighting for little Hope. Know that God cares for you more deeply than we can comprehend. Another family praying for you in Ontario.
    Sue Hutton

  7. Dear Amy:
    I actually am so happy that you have had a melt down in the NICU...that they all know you and your family are tired, fed-up, ready for answers, and you are Hope's advocate as she can't speak for herself, and the run around must be so say the least!
    Yes your Grandma Kirk would be proud of you. I never met her, or know her, but, I also got to that point, and told everyone I had had enough of the "rediculousness of the decisions that had been made on my father's behalf".
    Good for you!!! I am sure that you were very assertive, firm, and vocal concerning your daughter. I just wanted to THANK YOU for this!!!
    I have had this in my mind for at least the past 5 days...and felt like screaming all the way from ON.
    It is going to be glad that you are taking some time for you, Shawn is getting away alone, Hope is resting in her Incubator, and your Mom can get some rest as well.
    Take care of yourself, as you need too! Lot's of emotions, hormones, and all the other stuff that goes with having a baby, and dealing with all of this pressure!
    On behalf of those who can't speak, GOOD FOR YOU!!! That means you are a GREAT MOM!! Protecting your baby, and that is what Mom's do!
    Praying from afar, and yet, God knows all the people that are praying on your behalf, your families behalf, and Hopes behalf.
    Someday when we all see her picture sitting eating some spagetthi or what ever else she wants, we will know that we all had a part of her recovery, and her life!
    God be near you, and give you rest! <3

  8. HI, I am from Edmonton and our church runs a soccer league during the summer. Our first week is April 25th. You can find info at our facebook page
    or look for Pete-Darlene Wright.
    We will keep your family in our prayers!