Sunday, March 7, 2010

Sunday March 7, 2010

I apologize for the lag in blog posts the past couple of days. First of all the weather has been wonderful, which had us outside in the sun, and secondly Anaya has been having an extra difficult time with feedings. The last three days Anaya started throwing up mucous. Nothing but bubbly phlem. It was awful for her. Her feeds were going badly - with lots of choking and gurgling followed by bouts of extreme irritability. We've been trying to get more calories into her in condensed amounts using both conventional and unconventional products - however she became lethargic and slightly dehydrated on Saturday.

I got on the phone to Paediatrician Dr. Carrie Fitzimmons of Nelson, who suggested I bring Anaya into the hospital to be assessed and rehydrated. Carrie met us at the hospital and was waiting for us when we arrived. Anaya again weighed in at 5.9 Kg, which is not what we are hoping for. Upon examination it was decided to give Anaya an IV of both Saline and Glucose, however, no one was able to find a vein in Anaya's doughy little wrist.

After several attempts with an IV needle I suggested that we go to an NG (Nasal Gastric)feeding tube to give her the fluids and food she needs. This would simplify the feeding process, cutting down on the amount of choking risk and lowering the amount of mucous produced due to the irritation of the throat due to the choking (aspiration) episodes. In this way we could get more food more often into her which would increase her fluid and caloric intake, help her gain weight, and help her have the ENERGY to HEAL. This feeding tube is not a setback nor is it a life-support. It is a tool to help her in her recovery.

Dr. Fitzimmons showed gentle skill during the insertion of the tube - which only caused a few seconds of discomfort. We were then admitted to the hospital overnight to learn the ropes of the tube and for the observation of Anaya. The tube is pretty simple. It is a small plastic tube that is about two feet long. Most of it is outside of the body, the rest goes up her nose, through her nasal cavity, down through the nasopharynx and the esophogas to the stomach, where it sits happily in her baby belly.

I would like to thank the emergency room nurses that snuck us a sandwhich from somewhere in the middle of the night. We were hungry :) Thank you also to the nursing staff who provided us with the supplies Anaya required - above and beyond the call of duty. Thank you to Nurse Nancy who believes in the unconventional and has inspired me for Anaya's visit to Dr. Warren (Dr. Chinese Medicine). Thank you to the man who was always cleaning. Your job is important.

I never know what to say to non-medical people when they ask what is wrong with Anaya. Usually I just blurt out the truth.

"She has a very serious brain disease." I say while bouncing her gently in my arms and smiling. "But we have a lot of hope and we're not giving up."

At this point I usually get a wide eyed, sad looking response that conveys Compassion and sometimes Pity. I have a blockage up against Pity though - because pity is for people who have no hope and no future. The compassion is different. It's like a life-raft of emotional support that flows from one person to another and bouys them up. Compassion is a good lesson.

Anaya has a purpose here no matter how long she is here for. She is here to teach people lessons deep in their hearts and to inspire them to better things. She is here to teach me and my family. Perhaps she is here to teach you and you wont even know it. The grief that I sometimes feel for a childhood that may be lost is actually my own selfishness and is not usually beneficial to our situation. Don't be fooled though, by my ability to convey positivity, because there is a time in every day that I break down and mourn the loss of my baby's health and the Dr.'s heart wrenching outlook. There are hours in the night that I lay and watch her breathing through her perfect little nose, making sucking motions with her fat pink lips and the love that I feel flows out of my heart and cascades down my cheeks.

I know that we (all who love and care for Anaya) can and will make a difference in her healing and I know for a certainty that she is a pivotal character, around which others are inspired to their truths. It is not for me to say how long she'll stay, nor do we know how long any of us will stay. We can only be here in the now and do our best in the day to day to help her heal.

My lesson this month is BE HERE NOW. Do not focus on uncertain futures or pitiful pasts.

Being in the hospital has me writing slightly more emotionally than usual but I am not a rock and no man is an island. Without the love and support from our friends, family and community - this lesson would be a hell of hells. But amongst us we have enough love to make a difference. Thank you to Trish's family for watching Solara and to Shelann for watching the dogs.

Now that Anaya has her NG tube she is no longer choking. Her risk of pnemonia and aspiration have lessoned considerably and she is less irritable and much fuller ;)She should start gaining weight and I hope to see marked improvements within the next few days.

I have other news for you - but the Oscars are on and Anaya's asleep. Perhaps I should take a few moments here for myself but I will fill you in soon.


  1. Thanks for a great post. I hope the feeding tube helps Anaya gain the strength she needs.

    You have a very wise perspective on Anaya's life--it is a gift however long she has on this earth. Hang in there. You're in my thoughts and prayers.

  2. You and your family are strong. Anaya has so much love in her life. Love love love.

  3. Looking for a milk donor for you... are you still needing one? I also would love to donate something to the fundraiser. Is there a place where there are entries? I looked but didn't see one. Hopes and Blessings from our family to yours. Stay strong!


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