Monday, December 27, 2010

December 27, 2010

Christmas was a festive event this year. Brent's parents are here and Anaya and Solara were spoiled with love and gifts Christmas day. Brent and I cooked an amazing dinner of turkey, stuffing, potatoes, and veggies. Poor Anaya could only smell the delicious smells, and didn't get to taste it - but I'm hoping that next Christmas we will be able to blend her up some dinner in the blender and feed her some too. It's about ten days from now that we will be able to start her on her new diet.

We got a special blender that really pulverizes things and we are going to mix some real food in with the breast milk. I think we will start with some of baby's first foods including banana and avocado and try to include some fresh fruit and veggie juices. We will sprout some seeds and give her living greens as well as including coconut oil and maybe some raw goats milk. The last time we tried goats milk it ended badly - but she was quite young and I'm wondering if she will tolerate it better now that her digestive system is a bit more mature. We need to be careful about what we feed her. We have a nutritionist on our team to help us ensure she gets everything she needs.

Yesterday I ended up in the hospital for half the day because I had symptoms of meningitis. My neck and shoulders hurt really bad, I had a violent headache and my pupils were dilated really huge. The doc in emergency insisted on doing a bunch of tests including a lumbar puncture (spinal tap)and blood work. It was frightening and hurt. The great news is that I don't have any kind of infection in my spine, or elsewhere and that for some reason my pupils were big for an unknown reason. Today my pupils are normal, my neck doesn't hurt nearly as bad. Thank goodness.

When I was waiting in emergency for all the test results to come back I thought "Oh no - I can't be sick! Who will take care of the baby if I have to stay here for a week?" Brent assured me that he would be fine taking care of her, but I still had anxiety about not being able to be there for her if she needed me. Thank god I'm home now and there's nothing wrong with me.

My friend Lisa gave me a ride home last night from the hospital and we talked about Anaya and how my outlook has changed recently. I've become less positive, less accepting of what is. I don't know why or what changed. I only know that sometimes I get so sad and angry that Anaya doesn't get a chance to play and express herself. I get mad at whatever fate cast her this lot. Lisa reminded me that this is Anaya's life and that we can't place our expectations on her life. She's right - but still sometimes the feelings come up and perhaps just acknowledging them will be enough to help let them go. Thank you Lisa for the ride and the kind words.

Sunday, December 26, 2010

December 26, 2010

Happy 16 month Birthday Anaya!! This picture I took a moment ago shows my sleepy little love. Look how long her hair is getting! We love you, princess.

Wednesday, December 22, 2010

December 22, 2010

I haven't been sleeping well lately. It's not Anaya's fault. I find I just wake up for no reason around 3 am, again at 4, again at 5. This is new to me. I've always been a person who finds comfort in sleep - and I can sleep deeply even when being ever vigilant for Anaya's well being. It could be related to the change of hormones I seem to be experiencing because I'm no longer able to pump milk for Anaya.

When we came back from Calgary my milk decided to dwindle to almost nothing. Pumping was torturously slow and painful. I decided it was a good 10 months of pumping. I stopped taking my oodles of breast milk supplements and Motilium...and my milk simply dissappeered. Even though I haven't pumped now in days I have not experienced any engorgement or soreness. My body was ready to be done with the pump. I'm fortunate that Anaya has donors to help feed her, because she's still on a breast milk only diet.

Since I stopped taking the supplements and pumping I have experienced the worst depression I've ever felt. Every single emotional tear that I somehow kept at bay over the past 10 months has decided to leak out. I find it difficult to be positive, difficult to stay in the moment. I think too much about the future and imagine worst-case scenarios regarding Anaya's death. I've never been so sad or felt so hopeless. The thing is that I know it's illogical. Nothing has really changed. Anaya is doing well right now. I think this must be an emotional down-time caused by my body's abrupt hormonal change. I'm eating healthy and trying to get myself re-balanced. I'm hoping that the bright side is gonna shine through any day now.

The only other thing that has changed is that Anaya's father, Brent, got laid off from his job at Hellman Canoes. He's been building Canoes since May, out of wood and fibreglass. It was supposed to be a year round job - but right before Christmas they "ran out of work". Having more financial strain at Christmas time has not been pleasant. I'm trying to help Brent find work and currently I have him working for me doing odd jobs for my new temp agency. He has lots of skills. He's an educated welder, he knows gold and silver smithing, he's an amazing artist, he can cook an amazing meal and has experience as a line cook, and he can labor with the best of them. One of the things I love about Brent is that he is sparing with his words. He talks quietly and usually only after contemplation. His presence is calming. So if you know of any work in the Nelson Area that might be perfect for Brent, please let me know.

Anaya has been up and down this week with recovering from the cold that had her hospitallized last week. Sometimes her breathing sounds just wheez, snap, crackle, pop, bubble, and I worry about pneumonia. Other times she sounds clear and her lips and cheeks are a perfect pink. She's only had a couple of rough nights and otherwise has been sleeping well. Sometimes I worry about her sleeping so much. A few days this week she slept pretty much all day and all night. After the second day I started worrying about it. Wondering if her time was closer than I thought, wondering if she was going to slip into some kind of coma - but it didn't happen. She was awake and alert the next day. Perhaps she just needed rest to get over her cold.

Brent's parents, Marlene and Phil, are arriving today from Calgary to be here for Christmas. We have never had Christmas at our house before and it's something that I feel a bit uncertain about. I don't have any special traditions yet...I guess we'll have to come up with some. My mom passed away of a heart attack on Christmas eve when I was a teenager. Since then I've been struggling with enjoying Christmas, but the last couple of years have been better. Christmas is supposed to be a time of fun, cheer, laughter, good food and family. It's best for children - you should see what I got Anaya and Solara! I promise I'll post pictures after Christmas day.

Damn I forgot to mail the Christmas cards :(

Okay I must go finish that project and get them in the mail immediately. Three days till Christmas and..oh my... I feel like a flake for forgetting that. My friend Grant is coming to visit today. He's bringing milk from Calgary and he's also brining the power generator that has been generously donated to Anaya by some wonderful people. We will never be without power for Anaya's suction machine ever again. :) We are so thankful.

As a Christmas gift to those of you who love Anaya I am posting the link to our photo gallery from our recent photo shoot with Short and Sweet photography. I hope you enjoy it - it's a beautiful slideshow of Anaya and I, and my grandparents.

Link to Anaya's Photoshoot

Thursday, December 16, 2010

Dec 16 photo

Nurse Carol holds Anaya and reads :)

I'm happy I just learned how to upload photos to my blog on the go!

December 16, 2010

We are back at home now. Anaya is recovering from her cold slowly but surely. She is really gurgley in her throat this morning- though she slept through the night without a problem.

I sometimes wonder to myself about how strong I really am. Today I feel like life is beating me with a stick. I woke up sad and angry. I wept silently while I showered. I feel muddied, unclear, overwhelmed and helpless to save my baby. Brent would say I'm feeling sorry for myself and I ought to quit. My puddle of self-defeating thoughts is really quite a sight in my minds eye. It's more like a cold dark lake with scary weeds that grasp, and violent waves. Sometimes I don't see a way out of it - I just keep swimming. Other times I find myself on a sunny shore admiring the beauty of it.

In any case I can't sit here thinking about my metaphorical mind lake anymore. Today I go in to Community Futures to sign my contract granting me my first extension on my business idea. (Happy Thoughts!) This means I'll still have the flexibility to be with Anaya when she needs me. I want to give her as much love and time as I can while she's here.

Sunday, December 12, 2010

December 12, 2010

Anaya is sick. She came down with a cold over the past two days. She's needed increased suctioning all the time and especially at night. Last night there was a snowstorm and the power went out. At 4 am my suction machines low battery light came on. I decided we needed to go to the hospital. We all got up and left the house and drove to Nelson through the darkness and blowing snow. It was slow going but when we arrived we were given an emergency bed right away.

Now we have been admitted and given a room. Anaya is on antibiotics to hopefully prevent this cold from becoming pnemonia. I'm hoping being here will be good tonight. I could really use some sleep- it would be great if the nurses can care for her and let me sleep through the night. My little love is sleeping a lot today. Poor thing is so sick. Her breathing is so wet. It just makes me want to clear my throat and cough - as if I could will her to copy me. She only coughs when she's choking. It's a reflex. She can't make herself cough on purpose. It sucks to watch. I just feel so helpless.

Wednesday, December 8, 2010

December 8, 2010

Where we live outside of Nelson BC is quite dark in the winter. The sun comes over the mountain for only a couple hours. It starts getting darker at 3 in the afternoon. I took this picture of Anaya sitting in her special chair in the dining room just a few minutes ago. The lighting isn't the best because it's already getting dark. I wanted to show off her beautiful cheeks, unmarred by tube and tape. It's so lovely to no longer have the NG tube up her nose. She seems to be breathing a bit easier and does not seem discomforted by the new feeding system.

For the past few weeks I have existed inside a flurry of activity. My Community Futures business plan project and Anaya's Surgery have been at the forefront of my mind all the time. Due to having to go to Calgary and stay there for the G-tube surgery I missed my business plan due date. I've applied for an extension and I'm waiting to hear if it is approved. I'm praying and hoping it goes ahead - because if it doesn't I'll be desperately looking for work and having to work away from home. I wish with all my heart that I get to stay here, working from home in Anaya's presence.

Now that the G tube surgery is done I'm so relieved. I believe that Anaya is capable of living for quite some time as long as we keep her healthy and comfortable. The biggest part of keeping her healthy and comfortable is her diet. The human breastmilk donations that we have gotten from many wonderful milky mama's is keeping my baby alive and well. Lately there has been lots of discussion about the safety of informal breastmilk sharing. There has been news stories in the paper, on the TV, on the radio - all regarding breast milk sharing. This has been in response to a new group created by my friend Emma Kwasnica in Montreal called Eats on Feets it is a facebook group with global reach. It's purpose is to connect lactating moms willing to donate milk to mamas seeking human milk for their babies. You can also check out
My position on the safety of breastmilk sharing is quite simple. Without this my baby would be dead already. I'm for sharing 100%.

My poor breasts have not felt the touch of the baby they lactate for in 11 months. I've been pumping the whole time. I'm immune to the mechanical tug on my mammaries but I miss the connection time. Looking into your baby's eyes while they nurse is known to be one of the closest bonding connections a mom and baby share. Anaya and I share something different. We share my heartbeat and my voice, my touch and my kisses. I lay her head on my chest above my heart and the rhythmic thumping soothes her. This is our bonding time, our hearts beating together, snuggled in love. A friend of mine suggested that I nurse her baby to help improve my milk supply. I was not opposed to the idea. I tried it.

Initially I was scared. I was frightened that it was in some way a betrayal of my love for Anaya, I was frightened that I might enjoy it, I was frightened that in some way it would break my heart, I was frightened that it would show me how much I'm missing and I would drown in my tears forever. Fortunately the baby tried suckling and decided she didn't feel hungry and went to her mama. I only nursed her for like 10 seconds. Nothing happened emotionally except some fear that dissapated rather quickly. I think I'm still scared of the emotions I would feel while nursing another baby.

I love hearing stories from our milky mama's about how when they think of Anaya their milk lets down! How wonderful is that? I cannot give my thanks enough to the wonderful women who have shared their milk with Anaya. Words really cannot express my love and gratitude. Women from all ethnic backgrounds and classes have contributed. Love knows no boundaries. We love you all.

Our Calgary milk organizer - Lucy Lovelock, gave Anaya a present while we were in the hospital that is really very awesome and I have to tell you about it. It's a lamb-stuffy that has a gel hotpack inside that you warm up. I warm it up and use it to warm the milk up on the way through the tube into Anaya's tummy. It works like a charm and I think that every mom should have a gel pack stuffy for their baby. Here's a picture.

At the end of our Calgary trip we stayed for a few days at the Calgary Flames Rotary House. It is next to the Childrens Hospital and is a Hospice and respite centre for palliative children. I can't tell you how amazing it is. We had our own room for sleeping with all the creature comforts of home. There were nursing staff 24 hours a day to help take care of Anaya. They have tons of special gear for handicapped children and even a "Sensory Stimulation Room" where kids with disabilities can explore their environment in a fun way. In the Sensory room we were able to lay Anaya on a special bed that vibrates and moves to music. In this way she can really experience the music with more than just her hearing. If she ever goes deaf she'll still be able to FEEL the music while laying on this bed. Huge thanks are due to the Flames Rotary House and every donor that ever donated money to this great place. Check it out online! Flames Rotary House.

As always I feel like I have so much more to tell you about...but it will have to wait for another time.

Sunday, December 5, 2010

December 5, 2010

We are settling in at home. Anaya's G-tube is healing nicely and she appears healthy and comfortable. We now have more freezer space and are once again looking for milk donations.

This post is short and sweet because I'm so tired - getting over a cold myself.

Tuesday, November 30, 2010

November 30, 2010

Today was a good day. We were on the CTV news Calgary talking about how Anaya is fed donated breast milk. It was a good interview I think. Here is the link.

Anaya's Milky NEWS Story

We are able to fly home on Thursday if the weather is good and we are so excited to go home. Nelson has become a winter wonderland of fresh powder. Good thing I got some snowpants at the ski swap. Anaya has a little down snowsuit too. I wonder what she will think of the snow.

I can imagine flakes falling gently on her face, and her wondering what the hell that small cold feeling is. (smile)

Saturday, November 27, 2010

November 27, 2010

Yesterday the porter came to get us to go to surgery two hours before we expected them. It was a bit of a shock to my system. My throat tightened and my heart leaped up somewhere near my tonsils. We put her in a gown and proceeded to the Surgery unit.

It's like taxi parking for babies that need surgery. They line them up in cribs along one wall. Each crib has a team of nurses, surgeons and anestisiologists. Then after the parents have said goodbye they wheel them down the hall into their relative operating rooms.

I sat and held Anaya near her crib. Wondering if this was going to be the last time I held her warm little body in my arms and kissed her sweet cheeks. Tears dripped from my eyes onto her blankie and I felt as awful as I did the day we had to put our kitten down. They came to take her from me and I told her how much I loved her and that everything was going to be ok and that I would be okay and that she shouldn't worry about me - just do what was right for her.

Brent kissed her and we walked away together. We found some coffee and went to the waiting room. In the waiting room they have a screen that shows what part of surgery unit your child is in. Anaya is A.C her dr. was BeaudrP. She was in "OR" green for twice as long as she should have been and I started panicking. There was also this nurse who was trying to educated me about how to use the G Tube. I had a real hard time listening to her talk while I was worried about my baby being in her surgery twice as long as she's supposed to be. Then my parents and my brother showed up. We sat for a few minutes watching the screen and then the surgeon Finally came out and said she was doing great and breathing on her own!

I felt like jumping up and down. About half an hour later I got to see her in the recovery room and walk with her to the ICU. My little angel came through! I'm so glad she is able to stay with us longer. I would have missed her soooo much if she had to go already. The G tube site bled a bit but looked tidy. I took a picture of her in recovery directly after the surgery to show you.

Last night's sleep was pretty bad as the ICU has horrible cots for parents that feel like sleeping on a wire hammock. I would waken each time a bell or buzzer would go off because her oxygen level dropped or she stopped breathing for a few seconds. It was stressful.

We are being moved out of the ICU - Anaya is tolerating being fed through her new tube. I think we should be able to go home early this week. I will blog again as soon as I can.

Friday, November 26, 2010

G Tube Surgery

Just a quick update:
Anaya went in at 10 am. The surgeon came out at 11:30 and told us that it went well. She's doing great and breathing on her own. No extubation problems!

We are currently in the ICU and she's a bit grumpy. I'd best snuggle her up.

Wednesday, November 24, 2010

November 24, 2010

These past few days we have pretty much been bunkered down inside as it is so cold out. Anaya doesn't do well with cold. Her little body gets chilly and it takes a long time to warm her up again. Before we left Nelson we got her the warmest snowsuit we could find. It's down and we got it at Mountain Baby in Nelson. (They have great stuff). But even in her down suit she still gets cold when we go outside in this -20 celcius weather.

On Saturday we had two lovely ladies come to visit us to give us the gift of their profession. Dana Pugh, from Short and Sweet photography in Calgary and Heather Glenn, who takes baby hand/ foot/ finger imprints to make "Silver Soul" baby jewellery. Dana spent more than an hour with Anaya and I taking pictures. I took Anaya's feeding tube out to show her perfect little nose a bit better. I've only seen a couple of the resulting shots but the one above is so beautiful. I can't get over how lovely it is. You can see more of them on Dana's blog by clicking A good photographer is a true artist. To focus in on an emotion and show it through the lens of the camera takes skill, and training. I can see the love between Anaya and I in the picture above and I will be forever grateful to have it to look at.

While Dana was taking pictures, Heather was trying to get Anaya to press her hand and foot flat onto a piece of special paper that takes an imprint. It was a challenge but eventually we got a passable handprint and fingerprint. I'm excited to see what comes of it.

On Sunday evening Joanne and I moved into a hotel. Initially we were both staying with family on opposite ends of town. It ended up being a real challenge to get together because the roads were so bad and crowded. Traffic..Ugh. So we made the move to be closer to each other and take better care of the baby. It's kinda nice to have my own space to be in. I feel a lot of anxiety and stress leading up to the surgery and it's nice to have a place where I can be alone and lose myself in working on my business plan.

Monday night we were invited over to a milky mom and dad's place for dinner. It was lovely, warm and inviting. Thank you Sarah, Richard and Nathaniel.

A couple times we have ventured out to walk in the plus 15 system (as our hotel is downtown). Both times I ended up having anxiety. There are soooo many people walking through there. It just kinda gets to me. I like my small mountain town of Nelson. I love our even smaller village of Procter/Harrop.

Tomorrow Anaya is admitted to Hospital and Brent is flying in to be here for the surgery. Please pray with us that all will go well and that this is the right thing to do.

Friday, November 19, 2010

November 19, 2010

We made it to Calgary. We had our consultation with the surgeon (Dr.Beaudry) and he will be giving Anaya a G-tube on November 26. We are going to wait out the week here in Calgary and hope the weather warms up a bit. This photo was taken yesterday of my grandfather Al and his great-granddaughter. He recently had his leg amputated and spends lots of time laying down. Perfect spot to put Anaya for a snuggle.

We arrived to find lots of donated milk waiting for us. It was so wonderful. Some of the donors included sweet little gifts for Anaya and I. We are so incredibly grateful - Thank You!

I have mixed feelings about the surgery I'm glad that it's going to be done but I'm scared. I really need Brent to be here for that. We are working on getting him here for Friday morning - and I have to find someone to watch Solara for a few days.

We are trying to remember the peace we felt on tuesday during the Medicine Buddha meditation. Here is Rinpoche with Anaya.

Thursday, November 18, 2010

November 18, 2010

The last few days have passed like a whirlwind. On Tuesday Anaya had a personal healing blessing done by Tibetan Zasup Rinpoche. It was beautiful and Anaya really seemed to enjoy listening to the chanting.

On wednesday we went to the airport to fly to Calgary but our flight was cancelled due to visibility problems in Castlegar.

This morning I'm trying to re-book our tickets so that we can get to the appt in Calgary this afternoon. I'm trying not to be stressed...

Through all the things swirling around us, Anaya is doing well. She seems stable and comfortable. Hopefully we will get to Calgary today.

Saturday, November 13, 2010

November 13, 2010

We have had an incredible response. I've had more offers for milk then I know what to do with! Unfortunately I cannot accept any more milk donations at this time. Once we come home from Calgary with all this milk our deepfreeze will be full and we should be able to feed Anaya very well for the next few months.

Please know that we love everyone who has offered to help and we hope you will continue on our journey with us by reading the blog and sending us your good energy. I have not had time to write back personally to each offer and I apologize. I'm still working on it.

Anyone who has breastmilk that they would have donated to Anaya should contact their local Eats on Feets group (facebook). There are many sick children who could use your milk! We are advocating to start a milk bank and we have an interview with CTV on Thursday next week.

Anaya had a bit of a hard morning. She was phlemmy and congested. Solara just recovered from a cold. I sure hope Anaya is well by Wednesday. I can't imagine travelling with her if she's not doing well. Today I gave her vitamin C, colloidal silver, and rubbed oregano oil on her feet. I want to nip this thing in the bud.

We feel your support holding Anaya and our family up. :)

Friday, November 12, 2010

November 12, 2010

Anaya and I had an article about breastmilk in the paper today. I've gotten quite a few e-mails and comments. I'm working on answering them every time I have a second. Please have patience with me and I will get back to you as soon as possible.

Thank you so much for reading and caring!

Tuesday, November 9, 2010

November 9, 2010

I sometimes wonder what Anaya would be doing right now if she were a normal baby. Other babies her age are walking, dancing, eating solid foods and speaking their first words. While everyone else grows up - Anaya stays the same. Right now she is snuggled up in my left arm while I type with my right hand. She breathes, she mews, once in a while her little legs tense up. This is the same behaviour as 6 months ago.

I had the privilege of holding a newborn the other day. She put her hand in her mouth and sucked on her fingers. Anaya cannot move her hand to her mouth - nor suck. I wonder if she remembers any different. Sometimes in her sleep her little tongue moves like a baby nursing. I wonder if she dreams of nursing. I wonder if her dreams are sighted. When someone goes blind do they still dream in images? I would think so.

Anaya slept well last night - she was able to communicate to me that she was uncomfortable by letting out a little cry every minute or so. I changed her position and the little cries stopped and she slept soundly all night. Around 3 am I awoke to the sound of laboured breathing - so I turned on the vapour nebulizer and held the mist to her face. She breathed it in her sleep and her breathing became easier after about 10 minutes. Then I tried to go back to sleep.

It can be difficult to fall asleep once you are fully awake. My mind filled with to-do lists in preparation for the coming day and I started to feel anxiety. I remembered from previous experience that this can spiral into a panic attack. So I stopped thinking about stuff and sang kids songs in my head. I fell asleep sing-song counting in french. Now that I'm awake I dont even remember the song. Funny that.

Now we are up and my thoughts swirl again. When a mama looks at her baby does she ever see the flaws? I suppose we see them - but with unconditional love. Staring gently at her angelic face I wonder if there is a more beautiful baby anywhere on earth. Her eyebrows sit like golden arches over her mossy hazel eyes. Each eyelash curls in lengthy beauty up and to the side. Her delicate little button nose is the perfect spot to kiss, sitting just above her plump little lips.

Today is a perfect day for a snuggle and a cup of tea. In a week and a day we leave for the hospital. I'm striving to make each moment a perfect memory. Giving to my little love all the gentle stimulating experiences I can imagine. I gave her a drop of fresh pressed apple juice on her tongue the other day. Oh how she loved it! Her eyes widened and her little tongue licked her lips. Perhaps I shall find another drop of something interesting today.

Sunday, November 7, 2010

Milk News!

News on the milk front!

- 300 donated ounces are arriving today from the lower mainland!!
- a milk donor in Toronto and some of her wonderful friends are donating milk and the shipping fee and will be sending milk this week!
- paypal donations now total $350 and we are having the milk shipped from new York.

Thank you to the midwife who offered to help get the milk from New York - but I think we need to do a direct shipping on that because the dry ice is considered hazardous goods and there would be a fee anyways.

Friday, November 5, 2010

November 5, 2010

We are having a busy day today. Just thought I'd share a photo of Anaya and her little baby doll. It's so sweet. When Anaya sleeps they look alike.

Wednesday, November 3, 2010

Milk Donors Needed!

If you are interested in donating your frozen milk we would love to pursue it. We have found that frozen breast milk will stay frozen solid for days as long as it is in a styrofoam cooler with an appropriate amount of dry ice. 5lbs of dry ice per 24 hours is the amount required. The styrofoam cooler is lightweight and cheap - reducing shipping costs. It can be packed inside a cardboard box to reduce shipping wear and tear. We've been using the greyhound bus as it seems to be the quickest, most reliable and affordable transport within BC, Alberta and sask. I'm not sure about the other provinces - I think we'd have to air-courier it with Purolator, but I'm not sure.

I've approached both Fed-ex and Purolator about shipping sponsorship but neither of them have responded to my emails.

Coolers of breast milk can be sent collect on a greyhound bus to
Anaya Cassin-Potts
C/O Camara Cassin
Nelson, BC
250-509-0593 cell
250-229-4034 Home

Be sure to include the phone numbers on the parcel.

I am also trying to get our readers to donate a few dollars by the paypal button on the right to help pay for these shipping costs! If you have other nursing friends in your area why not all get together and fill a cooler with milk for Anaya?

If you are from farther away we are still trying to find a method to get the milk here. Any ideas or help would be appreciated.

There is a lady with 1000 oz of frozen milk in New York, New York who would like to donate but our shipping estimate with Fed-Ex is $448.00. Please help us find a more cost effective shipping solution that will get the milk here within 48 hours! Do you know ANYONE travelling to BC from New York who could take it with them???

Tuesday, November 2, 2010

November 2, 2010

This is our little pumpkin Anaya on Halloween out trick or treating in the local mall. Of course we know that she can't eat the candy - but hey I can :) I wanted her to have an authentic western Halloween experience. So we went trick or treating in costume just like the other toddlers. Oh and were there ever cute costumes everywhere!

Anaya has been much better secretion wise the last few days and we are getting better sleep. I'm so grateful for the good nights. I love waking up in the morning to her sweet little mews. It's like she's saying "Good Morning Mommy!" We snuggle for a time, warm in our blanket and plan out our day. Lately I've been working on researching for my business plan, writing my business plan, taking care of Anaya and my family's needs and having a night to myself on wednesdays. Whew! It's all very manageable when Anaya is doing well. I'm fortunate to have the flexibility that if she's not doing well I can be with her. I love working from home.

Lately I've been thinking about our trip to Calgary to see the surgeon about the G-tube. I really feel good about how she is doing all around. I think she is pretty stable with her breathing an apnea. She has not had repetitive apnea in a long time. I think that the part of her brain that controls her breathing is in pretty good shape. Last time they wouldn't do the surgery because they thought there was a good chance she wouldn't survive. They thought that the extubation (removal of the breathing apparatus) after the surgery would go badly, and as we are not wanting her on life support, she would die.

There is still a very real chance that she could die from the extubation now, but I do believe it is less than it was before. It's so hard to know what the right thing to do is. I want her to be comfortable and happy in her life. I know that the NG tube she has in her nose has caused incredible discomfort and irritation. Her whole nasal passage was swollen closed to the point we couldn't even get the tube in! Is it worth the risk of possibly dying to gain more comfort? These are hard questions. Her life expectancy is short...with the possibility of things becoming much much worse. Painful seizures, and loss of hearing are some of the expected symptoms.

Where do I place my faith? Do I trust in "God" to take her when the time is right?, do I trust my instinct, go forward with the surgery and just know that her time is her time? How will I assuage the guilt I'll feel if she does die on the table? Since the moment I found out my baby was sick I've been willing her to push forth, hoping for a miracle. Wanting her presence in my life to continue.

In order to proceed with the surgery, I will have to let go of the expectation that she will survive it. I will have to accept the very real possibility that the time before the surgery might be the last kiss, the last snuggle, the last mew. During the extubation I might have to hold her in my arms and watch her fade away, turning all shades of blue and grey. Returning home with empty arms to a life without a centre and a home full of her belongings. Having to pack up the momentos of her life, knowing I chose the surgery.

On the other side she might come through with flying colors. Things go just as they should and there are no complications. We get the surgery done immediately and extubation is a snap. She has no infection problems and the pain from the button is manageable with pain relievers. We come home a week later.

Those are the thoughts I've been having. Weighing the risk against the benefit. For now I'm just going to put on some nice piano music for my little love and watch the sound caress her being. I can tell she loves it.

Saturday, October 30, 2010

October 30, 2010

Last night my older daughter had a Halloween slumber party. Anaya seemed to enjoy listening to the ruckus of little girls screaming and running through the house. I had fun playing games with them and freaking them out by putting severed plastic fingers in the pasta dinner. I should have made less, because after that they wouldn't eat it. I had to bribe them with cookies.

Anaya has had a good couple of days since our last trip to the hospital on Tuesday. Tuesday was awful. We couldn't get her feeding tube through her nasal passage. She ended up with a bleeding nose. This has never happened before. I've been doing her tube insertion every week for a year, and this is the first time we could not get it in either side. Both the nurse and I tried. So we took her in to see the pediatrician, who said her nasal passages are swollen and blocked.

I started having nightmare imagery of an emergency trip to the childrens hospital, but my fears were quickly put away when the Dr said we could put the feeding tube in her mouth. She placed it with ease and we were able to feed the baby. Phew!!

On November 18 we have a surgery consultation with Alberta childrens for a G-tube again. Maybe this time they will deem her stable enough to proceed with it.

Monday, October 25, 2010

October 25, 2010

Our nights have been long and sleep deprived lately. Our battle to manage Anaya's secretions and keep her comfortable is a long and tedious one. Sometimes her breath rattles so deeply there is no way I can sleep. You can hear it, the thick bubbly mucous, as she struggles to draw air through her windpipe. If she breathes deeply she inhales some of it and awakens choking. I sit up quickly with her in my arms, position her head in the crook of my left arm, reach over and grab the suction tube with my right hand and flip the switch.

The suction machine comes alive with the roar of a small generator. Her eyes widen and she gives a mighty cough (which is a heaving yell), managing to bring the phlem up into her mouth. I place with vacuum tube gently in her mouth and it grabs the gob of yuck and pulls it through the tube into the cannister.

She is granted a few moments respite and a few deep breaths. We lay back down. I on my back with her draped over my chest. I can feel her- each breath and sigh. In a few moments a new layer of phlem will form and the rattle will start again. I lay there and wish I had the ability to will away her discomfort. We fall asleep together for a time. Knowing we will awaken again all too soon.

Morning comes and I awaken exhausted. Downing a cup of coffee I turn to the tasks of the day, knowing I must press on. There are calls to be made, places to go, people to see. Only to come home to my nest and cradle my love upon my chest.

My little love rests easier now.

Friday, October 22, 2010

October 22, 2010

The week has flown by in a flurry of activity. I hesitate to embrace how fast time is flowing. It frightens me to think that as this river of experience flows, eventually it will reach the ocean. The biggest thing is that I don't know what the ocean will look like. Will it be of despair? Sadness? Grief? Acceptance? Joy? Freedom? Whatever it is, my river of experience is connected to it - and downward flowing we go.

Anaya has been having mixed experience days. The past few nights sleep has been very good, comparitively. The mornings seem to be the worst for her. She awakens with a frog in her throat and needs at least an hour of special intensive care to manage those secretions. She seems to be stable as far as the demyelination goes. Her motor skills haven't gotten any worse. She can still open her eyelids and cry, as well as numerous other Anaya skills. I'm glad that this period of stability has been so prolonged.

The past two weeks I have been working on my business plan, attempting to find breast milk donations, trying to organize shipping for milk and trying to find a shipper that will donate their services. On top of this I'm trying to get wood in for winter, give my older daughter attention, take Anaya to her Dr's appointments and do all the little things that moms have to do for their families. I'm feeling a bit bogged down.

What keeps me going? The love and support I get from you, my readers, the support from the moms, the Nelson community. Have I ever told you how much I love Remedies Pharmacy in Nelson? They have been donating Milk storage bags to moms that pump for Anaya for the past 8 months! They are a consistant loving presence in our lives. They support our lifeline- the breast milk we get from our beautiful milky mamas.

Even when I feel the weight of the world on my shoulders, I can feel your support. Thank you.

Tuesday, October 19, 2010

October 19, 2010

Today was a much better day.

Anaya slept well last night and only needed to be suctioned once. It so happened that she threw up a little bit before bed and the residue made her throat gurgly and gross. It makes her uncomfortable. I put a bit of water in her mouth and sucked it out with the suction to help her get rid of the unpleasant taste. No one likes the taste of vomit.

Once we got that under control we slept great.

Today was both productive and beautiful. Anaya enjoyed a great day with Joanne while I worked away at my various projects both work and family related.

This picture is of Anaya before her walk all snuggled up in layers of blankies with her bear hat on.

She loves her walks.

Still no word from Fed-Ex. Although I did hear back from Greyhound. They have cancelled their charitable program all together. Rough. company must be having hard times.

Monday, October 18, 2010

October 18, 2010

Last night was awful. Anaya kept waking up every 10 minutes choking on her phlem. I had to suction her at least 10 times. I lost count. I should have put her new medicine patch on yesterday. It must have worn off last night.

Poor baby was so tired. I am so tired.

Saturday, October 16, 2010

October 16, 2010


The visit to the opthamologist was long. We showed up 15 min early for our appointment and then sat in the hall waiting for an hour an a half.

Dr.Lyons took us into his office and asked what our problem was. I told him of Anaya's condition and that we were wondering if she can see anything. I explained that she stopped making eye contact long ago.

He checked her pupillary response - nothing. Then he looked at her optic nerve. He looked into my eyes and said "I'm sorry, the degree of atrophy is very bad. It is unlikely that she can see anything."

I was expecting this but I was hoping for something more. My eyes teared up. I thanked him and left with Anaya. Walking through the hospital I cried. I was talking to myself - it's silly to cry now Camara - you already knew this! Why are you crying?

And we went home.

No word yet from Fed Ex. But two wonderful mamas from Langly BC sent milk on a greyhound bus yesterday. Thank you so much!!!

Thursday, October 14, 2010

Fed Ex Shipping Sponsorship continued

I am so happy that so many of our blog readers have commented on the Fed-Ex post. I have just heard that there are people within Fed-Ex reading the blog! Our voices are being heard!

One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.

Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.

At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.

I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.

Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.

Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.

Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.

Please help us Fed Ex. It's a matter of life and health.

Wednesday, October 13, 2010

Fed-Ex Shipping Sponsorship

We have received a frozen breastmilk donation from a mother in Nanaimo. We are very blessed that the transport of the milk all worked out as we had a friend (Dave) who was actually going to the island and returning to Procter quickly. He picked up some dry ice, which kept the milk frozen solid during the long drive.

I am so thankful to Vanessa, Dave and his daughter Shona for their help.

This morning I contacted Fed Ex about a shipping sponsorship. We have been contacted by moms in Ontario and the United states that would like to send large amounts of frozen milk but the shipping costs are prohibitive. Lets all hope and pray that the Angels at Fed-Ex are going to approve our shipping sponsorship so that we can get milk from these helpful moms to Anaya.

Leave your comments for the Fed Ex Angels with this post!!!

Anaya has had a rough couple of days. She is really struggling with mucous secretions and is needing constant nebulization and suctioning. She isn't sleeping well and mornings seem to be the worst. At this point she is doing much better than yesterday. I was at a business course with Community Futures yesterday but her nurse took excellent care of her.

Today I'm at home with Anaya writing a market research plan and survey, as well as finding my competitors. My business idea is still under wraps until I get my city license. Tomorrow I will continue with my plan as well as take Anaya to see the childrens Opthamologist (eye doctor) who is coming to Nelson for a clinic from the BC Childrens Hospital. We were told she is likely now blind by our pediatrician but I am hoping that the opthamologist may be able to give us a more concrete assesment of her visual condition.

Please take a minute and send some clear breathing thoughts/prayers to Anaya today.

Friday, October 8, 2010

Friday October 8, 2010

There's only so much dwelling one can do on the same topic for any length of time. I have dwelled deep in the depths of my emotions, and have come out with new perspectives. I think that contemplating death is on some level good for the soul. It brings more appreciation to everyday life. More meaning to the moments.

The sadness that was so overwhelming initially has broken like a wave over rocks. The water still remains but the inertia is gone. Now grief sometimes grips me in moments of sweet tenderness. I have prepared myself for her death so much that I'm done with it for now. She's stable, she's healthy (for her), she's not in apparent pain and there is absolutely no way of knowing if she's going to live to tomorrow or 5 years from now. Hunter Kelly - a boy with Krabbe, lived to be 7.

So now instead of preparing for and dwelling on death I'm preparing for life and living.

The picture above is of Anaya in her sling wrap on our walk tuesday. I found a daisy to clip into her hair. Fall is a fantastic season. Life withdraws into itself - preparing for the cold months, some things bloom and then die. It's truly a beautiful amazing thing. The cycle of life and death "For life and death are one, even as the river and the sea are one".

The contemplation of such things brings a certain grace into your life and a certain wisdom into your heart. Nothing is lost. Spring will come again. But this has changed me. I look upon the world with the eyes of the crone. People my age, even older seem so young and vibrant and innocent. Sometimes I find it difficult to connect with them. I find comfort in my matronly friends who have loved and lost deeply and comprehend my grief and my small joys. I seek not to judge, each person is unique and is experiencing life for themselves. None has a more valid experience than the other. We are each here for our own lessons. I don't think we really know what they are until we look back on them.

I look back and know my little love has already taught me so much. "To the depth you feel pain, to the same extent you will feel your joy" - well I'm certain that this is true now.

Our days cycle on, constantly striving to live in the moment. Anaya is well. Sweet, innocent, warm and loved she carries on with her unique experience of life. I don't forsee an ending, I've let go of it for now.

This is Anaya yesterday holding one of her teething toys in her mouth. She is unable to hold things in her hands but has recently discovered how to hold things with her teeth. She is so focused and is concentrating really hard. It was so cute. I wanted to share it with you.

Thursday, September 30, 2010

Thursday Sept 30, 2010

This past week has been a flurry of activity. From coming home from the hospital, resting for a couple rainy days, attending a wedding and then attending a two day seating clinic in Castlegar.

The seating clinic was fantastic and amazing. There is a team of professionals that come from the BC childrens hospital sunnyhill seating division to help handicapped children in the koots with things like wheelchairs, chairs that support their bodies properly, special beds, walkers, standers etc. Russ is the custom builder and he has a van outside the hospital and they take custom measurements and then customize your unit while you wait! It is just outstanding. Russ is the man of the hour. He designed and custom built both a chair and a stander for Anaya.

Anaya seems to really like the chair and the stander will take some getting used to and a lot of practice. It is hard on her body to stand erect, even strapped in as it is, because her little joints and muscles are so soft from never being used. Our physio therapist recommended that we start with a few minutes once or twice a week, after we get some special orthotics to help keep her feet aligned.

You can see in the pictures just how grown up she is now 13 months old! She has surpassed the average life expectancy for kids with Krabbe and we hope she stays strong and stays as long as she feels inclined.

I also got excellent news yesterday. I got accepted to the smart start program so I will be working on developing a business plan for the next couple months. I will need to spend a couple days a week in Nelson but the rest of the time I can work from home and be close to Anaya and HAVE AN INCOME!!! I'm really excited about the prospect of having a challenge that stimulates my mind, makes money, and allows me to be at home with my little love in case she needs me.

Anaya is doing very well health-wise this week and although the trips to Castlegar were strenuous I think some mellow time and rest today will do her good.

Saturday, September 25, 2010

Saturday September 25, 2010

Good morning world!
Anaya and I are back home. She responded really well to the antibiotics and all the love she received in the hospital. She is still dealing with a stuffy nose but her lungs are clear. Thank you to everyone who helped with her recovery - by pumping milk, bringing food, visiting, praying and sending your well-wishes.

The day we went into the hospital our dog Alexander died in a tragic accident. As a family we've been grieving his loss. Pets come so close to the heart. I believe he thought of himself as Anaya's protector. He used to keep other dogs away from her - and strange people too. Now I'm certain his spirit will be there to guide and protect her as she continues on her journey. She was the only one he kissed every morning. A little delicate lick on the cheek. It was always the sweetest thing to witness.

He had his faults but we loved him anyway and he will be and is sorely missed.

Rest Peacefully Alexander. I hope to see you in my dreams and I'm counting on you to be there for your baby girl when she needs you.

Saturday, September 18, 2010

Saturday September 18, 2010

Anaya started having breathing difficulties yesterday. I brought her to the hospital. She has pneumonia and is now on antibiotics. She slept all day. She is now awake and distressed. I must go.

Tuesday, September 14, 2010

Tuesday September 14, 2010

Fall is definately here with a vengence. The hot winds of August have been replaced by the cool grey shroud of fall. The leaves are turning yellow, orange and red. It reminds me of last year, freshly home with my newborn baby Anaya. She was so precious and such a voracious little feeder. She pretty much nursed all the time. My memories of the time after her birth are clouded. What is there to remember? She nursed and slept. Time is stealing away the precious moments I didn't catch on film. Which day did she first smile on? I don't remember, I didn't write it down - what day did she lose her smile? I dont know it happened gradually.

In general I try NOT to remember what she used to be like before she got sick. Because then I grieve for what's been lost. I try to stay in the here and now. I breathe in her clean baby scent. Kiss her sweet soft cheek and revel in her simple presence. I have no idea how long we will go on like this but that's okay. As a whole I think she's still aware of things that are going on around her. Her mama still brings her comfort and she's not suffering every moment. The apnea seems to have lessened in it's intensity. She no longer turns blue several times a day. The choking has gotten less, the mucous is much more manageable, she only needs suctioning a few times a week lately. Would it be wrong for me to pray that things stay like this until the end? I don't want her to get worse. I don't want her to suffer. I would rather be suprised and wake up to find she's left us. But I don't get a choice. I just get to go along with her on her journey. The rest is up to her and, for lack of a better term, God.

My maternity leave has ended and I'm seeking to make work for myself. I've gone to the community futures program with an idea for a home-based business. So that I can be close to Anaya and still make money. I can't imagine missing that many hours of her life. At least when I work at home I can take a five minute break and hold her, kiss her, sing her a song and let her know that I'm still here. If I spend too much time away would she forget me? Am I attached to the idea that she knows me? Yes. I want her to know me.

Financially things are tight. A lot of money got spent in the early days of Anaya's illness. Back when I still thought that there must be a treatment that could stop the progression of the disease and heal her. We tried everything - and so many things made her worse- or helped a wee bit - or did nothing. A word of advice to moms of young babies. If a naturopath or TCM tells you to radicly alter a baby's diet with the addition of herbs and supplemnts DONT. God it made her so sick. She was puking and pooping and losing weight for weeks. Then we tried more energy-related healing methods. It didn't hurt her but it didn't seem to heal her either. We did meet a lot of very helpful healers who had their hearts in the right places. Some days we spent more than $500 a day...I don't know why I'm rambling on about this. I do not regret trying everything we could. I just wish it had worked. I wish my baby was cooing and smiling and nursing. By now she'd be walking. She might even say things like "mama" or "dada". Instead I'm trying to figure out how we're going to move her when she gets bigger so that we don't dislocate her shoulders.

I'm going to stop torturing myself now. Stay in the PRESENT Camara!

Anaya is still sleeping. In another hour our nurse will be here to help with her. I'm working on my community futures application and I have the will to succeed. Everything is going to be ok.

Thursday, September 9, 2010

Thursday September 9, 2010

Anaya slept well last night. It's amazing how much a change of position helps her. Her favorite way to sleep is with her head over my heart. Her breathing clears right up and she drifts off into her dreams. I wonder if she "sees" in her dreams. She did have vision for 5 months.

Today is the day I was born. My mother is deceased and today is one of the days I miss her. Thank you for birthing me, mom!

Solara sang to me in bed this morning. It was sweet. :)

Wednesday, September 8, 2010

Anaya's viewpoint

I am warm
my tummy is full
Mama holds me
My toes tickle
my feet twitch
I see colors flying - my angels dancing
breathing in breathing out
I hum a sound and yawn
Mama runs her fingers through my hair, over my brow
Oh - the sweetness of touch.
Tingling awareness of light feathered moments
Needing to move I arch and bend
My mommy helps me
She is my support
I feel her kisses gently on my face
I open my mouth and smack it closed
I want to smile - Good morning Mommy!

Tuesday, September 7, 2010

Tuesday September 7, 2010

The cool air of the morning caressed our faces, the scent of lingering woodsmoke alighted gently on the tip of my nose. Anaya and I snuggled deeper into the blankets - surrounded by warmth. Knowing that tuesday mornings is Bryna Martin's morning at the Procter Bakery I felt inspired to get up and take Anaya for a cup of coffee in the warmth of the oven-heated bakery. Joanne is taking today off in lieu of thursday and so it is a nurseless day. Nurseless days are generally quiet days for me. I spend time with Anaya and reflect on life.

After dressing us both up nice and toasty- we zipped down to the bakery. Bryna is so on top of her baking days. At 8 am there were already cinnamon buns, muffins, scones and she was working on apple tarts. It has taken me a while to get to know Bryna, we were pregnant at the same time and her daughter Ella is only a few months older than Anaya. Bryna is a sweet and kind woman with a good sense of humour. We spoke of children, we spoke of times before children and how life changes after you welcome a child into it.

I held Anaya in my lap and sipped my coffee, turning the feeding pump on and listening to the little sounds it makes as it gently pushes the warmed mama-milk into her tummy. She makes contented little sounds - although she was a bit wet in the throat this morning. I took in the sweetness of her face, her blond hair has gotten longer - creating a golden halo. I had clipped a small white flower clip into her hair on my way out the door and it looks so cute there.

Returning home to the breast pump I sit here now and write. The day feels like one of creation and kitchen warmth. Perhaps some baking could be done if Anaya will cooperate. I plan on doing some of her favorite things with her today. Singing to her, walking with her, bathing her. Onward with love we go!

Sunday, September 5, 2010

Sunday September 5, 2010

This picture of Solara and Anaya was taken a week ago, the day of Catherine and Charlies wedding reception. Anaya looked so sweet in the outfit - and her adoring sister was sweet too!

We had a small birthday dinner for Anaya last week. A few close friends came over and we even had a cake. I put a little bit in Anaya's mouth do that she could taste it. She seemed to enjoy it. I also put a sucker in her mouth for a few moments and she liked that too. Her birthday WAS a big deal. I just haven't been inspired to write about it. It was a deeply personal experience for me. I am very happy my little girl has been doing so well and is still here with us. She beings more joy than sadness to my life. I think sometimes I write too many sad blog posts and not enough happy ones. I guess it's because when I get down I feel like writing to get the feelings out. This week I will strive to share more of the fantastic moments with you.

Today is a stay at home Sunday. This morning Anaya has been hanging out with Brent while Solara and I puttered in the kitchen making blackberry peach jam. Our neighbours (Raeanne and Lloyd) let us pick some of their blackberries. Solara, Anaya and I walked over there yesterday. Let me tell you what blackberry picking sounds like. OUCH!!! I got pricked a few times. Before we went picking we canned diced tomatoes. I had initially given up on the idea but Solara was persistant because she loves dicing tomatoes.

This week Anaya has been more phlemmy than previously. The start of August was so great for her. I'm not certain exactly what has changed for her but I think it could be teething. She now has two teeth on the bottom and two coming in up top. Poor little darling. Sometimes,even in her sleep, she mews in pain. I've been giving her ibuprophen and rubbing her gums. Little dear can't even chew on anything to relieve the pain. The painkillers seem to help. She's out cold right now - we gave her some medicine a little while ago.

Now it's time to pump again. I can't believe I've been pumping now for 8 months. I miss the feeling of nursing a baby. I miss her looking up at me with her big eyes. I should have taken more pictures of her when she was first born.

Saturday, August 28, 2010

These pictures are of Anaya in the days surrounding her 1st birthday. I often wonder what Anaya is experiencing and I thought I would try writing a post from her point of view.

This morning I awoke and it was hard to get a breath. I move my eyes back and forth- trying to find my mommy but I can't see her. I can't see anything. I cough and my mommy picks me up and wipes out my mouth with a soft cloth that smells of clean laundry. It tickled the back of my throat and I gagged. A big gob of mucous came out - but still I could only take small shallow breaths. Mommy carried me down the stairs (thump, thump, thump) then she laid me down and turned on the Incredibly Loud and Scary Thing that is the suction machine. She opened my mouth a stuck the tube down my throat. It hurt and my eyes teared up. I gagged repeatedly - trying desperately to get it out. I wish I could reach up with my hands - but my arms wont move. Mommy pulls the sucker out and I experience relief and I can breathe again.

I cry and try to yell to tell her how awful it is - but all that comes out is a little mew. Mommy snuggles me and holds me close, whispering that everything's going to be okay now that she's got me. Resting my head against her soft chest the sound of her breathing and the thump thump of her heart beat calms my fear. I take deep breaths. I feel the soft touch of mommy's kisses on my forehead and the bridge of my nose. She smothers me with little kisses and I love it.

Now I hear the Not as Loud noise that makes the cool wet air. Mommy is still holding me and the salty air is in my mouth- in my nose. I breathe it in and it makes my throat feel better. It feels good to breathe it. It tastes salty and salty is one of the only flavours I know. The sound is gone. I feel a drop on my tongue. It is a drop of mama milk. I taste the sweetness of it and move my tongue against my mouth, savouring it. I swallow and it goes down okay. Then I take a breath but - oh no! some of the milk goes down into my larynx and I choke and sputter. After a few more swallows I can breathe again...

Thursday, August 26, 2010

August 26, 2010

Anaya is one year old today. It's overwhelming and awesome. She's doing alright. We are short of fresh breast milk but we are working on finding more donors.

I'm just not up for writing this month. My heart beats in the stillness. My love aches. Little joys come in small moments. I hold space for Anaya's health and keep living.

She still knows me.

Happy Birthday Anaya. Thank you for being my baby, my teacher and my cuddle buddy. Love you forever ;)

Wednesday, August 18, 2010

August 17, 2010

The past few days have been incredible. Anaya hasn't had such a peaceful existance since before she became ill. She is relaxed and shows periods of awareness. She is responding in her own way to sounds and touch. Her second tooth is almost in but it does not seem to be causing too much pain. Last week I had an epiphany that perhaps she was having stomach aches and heartburn. I approached our doc with my theory and we are trying some antacid medicine. It really seems to be working. Anaya is refluxing less and seems very comfortable. I have not needed to suction her in days.

We have some new moms that have started pumping milk for Anaya. They are joining the ranks of our Heros, Anaya's Milky Moms. We feel blessed to have you in our lives and can only hope to convey our love and appreciation through mere words.

I would have to say that this week has been one of Anaya's healthiest weeks ever. She is very stable - improving even. She is sleeping well but also has periods of calm alertness during the day.

On my end things are great. How can they not be when Anaya is doing so well? I'm enjoying our moments together. Basking in the saintly glow of her sweetness. I can only hope that she will remain comfortable and in good spirits.

Her first birthday fast approaches!

Thursday, August 12, 2010

August 12, 2010

Apparently my comments thing is broken. I'm trying to fix it.

Anaya is doing alright. Recently weighed in at 7.74kg which is 17.5 lbs.

I'm trying to give her more sound and touch stimulation. I think she likes it.

We are trying to find more milk donors for Anaya. I've been pumping all day to try to increase my supply. So far a little bit of extra milk and the heavy feeling of couch potatoness. I've literally pumped for 6 hours today.

Anaya and Solara and I made it through the day without the nurse. I feel kind of lonely and lethargic. I suppose it's just one of those cloudy days. It's been good for Anaya though. She hasn't needed suctioning today. I tried to put her down for a while but she just cried - so I held her and pulled my fingers through her hair and kissed her cheeks. That's really how it's been. Me, baby and the milk pump. I think her second tooth is almost through. I hope she's not too uncomfortable.

Sorry for the lame entry. My heart's not into writing the last few days.

Friday, August 6, 2010

August 6, 2010

How can I possibly drink enough of her in to last a lifetime? This path winds slowly down. Sometimes my heart aches to much to write and I find solace in keeping busy. I bustle around with Anaya in my arms and try to forget she's sick. Then a moment sneaks up on me and I find my heart on the floor beneath my feet. The weight of myself, of my grief, is too much for my heart to bear.

Oh My little love. I want to keep you forever and see you grow up. I'm sorry that nothing we are trying seems to be helping. I have no words...

Wednesday, August 4, 2010


I was changing Anaya's diaper on the grass and Alexander, our Akbash who is taller than our kitchen table and weighs 140lbs, came to lay by Anaya's head to make certain she was well taken care of. Notice how closely he laid his paw to her hand. Every morning he comes to say "Good Morning" to Anaya by kissing her on the cheek. She is the only person he kisses. He's not a "licky" dog. I find it amazing that he's so attached to her.

August 4, 2010

Anaya slept well last night. The only issue seemed to be her breath catching in her throat on inhalation. I held the nebulizer vapour to her sleeping lips until it dissapated. It's interesting how a little saltwater vapour can soothe her throat. Right now I can hear her breathing through the baby monitor and the catch is back this morning. I'll try giving her a neb (nebulizer) in a few minutes, hopefully it will work to soothe her again.

Our little angel seems to be sleeping more lately. Her periods of wakefullness are shorter and less aware. Although who am I to say she is less aware? Perhaps her awareness is more focused than mine with a smaller scope. Perhaps she is aware of each breath she takes, each blink and swallow. I can imagine her smelling the sweetness of the morning air, the scent of the blooming roses, different types of food cooking on the stove. Her awareness is all present time. What a gift.

I can imagine her feeling our kisses on her skin. I dreampt that she smiled at me last night, and puckered her little lips for a kiss. Oh sweet baby :)

Some days are better than others. Yesterday had some hard moments. There was a baby I saw who was about the same age as Anaya. She was playing with her hand in the water fountain, stomping her little foot on a leaf - absorbed in the experience of the world around her. She was so cute and so sweet. My heart ached for my daughter who is unable to stand, unable to walk, unable to reach her hand into the falling water, or stamp her bare foot on a leaf. I accept these things but they sadden me. There are healthy babies everywhere I look. Most of the time it's no big deal, sometimes it splits my world asunder.

Now I shall go help my sleeping baby breathe easier.

Monday, August 2, 2010


My Baby,
always have I loved you, never would I abandon you.
Since the moment of your becoming,
I have never been the same.
What memories I have of your solid kicks, your hiccups, rolling around in my womb.

You make me smile.
I remember birthing you.
The water of the tub hummed as I OM 'd through each agony.
You could hear me, I know, singing you into the world.

I dreampt of a life for you beyond mine.

Know this, little one,
It was I who caught your shoulders and lifted you gently to my chest.
Oh you were brave!
So loud and vocal, so feminine in sound.
Your strong little arms waved until you settled.
Your eyes looked into mine and you blinked like you knew me.
My soul knows yours of that I'm certain.

I wrapped my arms around you, as I am now, keeping you warm and securing you in love.

When you struggle, I struggle with you.
Would that I could will these anguishes away.
I fight with my heart.
I long for you to live, every instinct screams within me.

Yet I am coming to peace with letting you go.
You slip a little furthur each day.
One day I know you will slip away from me.

I pray that you will allow me to be there, at your final breath.
Our deaths are our greatest moment- our graduation from this life.
You are weathering this life with such grace.
Your strength and beauty inspires me to poetry.
I am so proud of you.

Many things have changed, but never has my love.
My respect for you deepens with each passing day.
You are my greatest teacher.

My Baby.

Thursday, July 29, 2010

We need a hand!

We planted a good sized garden this year in the spirit of health. The best food for you is the kind you grow yourself. Unfortunately I'm having a hard time keeping up with the weeds. Lots of people have asked if there is anything they can do to help us and now I'm asking for help.

Please if you have an hour or two come help me with some weeding! Call me at 250 509-0593 or send me an e-mail at maraglow at gmail dot com. ( I have to write it that way to avoid spammers getting my addy)

Wednesday, July 28, 2010

Wednesday July 28, 2010

I'm reasonably certain that as soon as I sat down to type she woke up. I can envision her laying on the pillow, mouth slowly opening and closing, blind eyes darting around the room. I'm not entirely convinced that she can't see anything. I think perhaps her ability to focus is gone, but perhaps she can see light and shadow. Maybe auras. Who knows?

Monday the 26th was Anaya's 11 month Birthday. It was also my close friend Penny's Birthday. I decided to celebrate with them by inviting some of Penny's friends over for dinner and suprising Penny. It was quite lovely. We had a turkey dinner outside on the lawn - but the cake was the real winner. Micheal at the Procter Bakery made a triple layer callebaut chocolate cake and then I iced it with callebaut dark chocolate ganache and decorated it with pink icing and edible flowers. I had fun doing that :)

Anaya has been having difficulties with her secretions the last few days and we are just trying to help her stay comfortable. She needs me now. I must go.

Friday, July 23, 2010

Friday July 23, 2010

This morning is one of those blue-sky days. The kind where you wake up and look out the window and can't wait to experience the day. From my vantage point at my milk-pumping station right now I can see only one small cloud hovering over the mountain. The forecast is for SUN SUN SUN and I'm overjoyed. There are a variety of Sun loving things that need to be done today.

1)Mow lawn
2)Walk dogs to lake
3)Pull some weeds
4)Jump in pond
5)Dip baby in pond
6)Pick Raspberries
7)Water everything

List subject to baby's cooperation. Maybe I'll get some help with the mowing part :)

Joanne is coming today. Yesterday she was not here, as she doesn't work on thursdays, but we have a new girl that comes to help on thursdays. Her name is Kali. She's a Care Aide and a nursing student. She's also very meticulous and she helps me keep the house clean. She washed some windows for me yesterday and WOW! They are so clear now you can't even tell that there is glass there!

Despite being overcast and rainy yesterday I had a great day. Anaya had a bit of a gurgle most of the day but it was manageable. She was pretty content to be close by while I cleaned and refilled my herbs and spices containers in the spice rack. I played Mozart for her and she seemed to like it. Penny came over to visit and we sat and chatted and just hung out in the bond of our friendship. I like being with people where silence is acceptable. Where you don't have to speak every second. I served Penny a glass of red wine from the box my dad left here a few weeks ago and she almost gagged. I guess it's off now. Time to toss it!

Once Penny left I went to see a new friend of mine who is a pottery instructor at KSA. Her name is Lisa Martin. I took Anaya with me and we journeyed to her house for dinner and some pottery demos in the studio. Lisa showed me some tricks I did not know and I pulled my very first mug handle. Lisa looked at my first works that I had taken to her house to fire and she said something that really excited me. She said that I have a natural talent for potting and that I'm "Gifted". WOOHOO! I felt like jumping up and down and throwing my hands in the air. I'm good at something that is really fun! With everything that goes on in my life it's sure nice to feel like a have a tangible, valuable skill. I'd really like to take Lisa's pottery class in September, and if Anaya can spare me to be away one evening a week I'm going to do it! Lisa gifted me with a beautiful mug and bowl to take home and I left feeling inspired and motivated and happy.

Anaya is still sleeping in bed right now while I pump and write. Her cherubic little face is cradled peacefully against the pillow. Her chubby fingers stretched out towards where I was laying. She is so warm and snuggleable. I'm so glad to be her mother. I'm so glad that she chose to come to us. She is teaching me more about myself and about life that I ever thought was possible in such a short period of time. We are blessed to have each other.

Wednesday, July 21, 2010

Wednesday July 21, 2010

Yesterday Anaya and I had an interesting day. It started out with Anaya sleeping in a new set up beside the bed, instead of sharing my pillow. We didn't sleep quite as awesomely as I had hoped. I think it will take some getting used to. I kept waking up to check her and make sure she was warm enough, and that her head was positioned properly to allow good breathing. She awoke with a gurgle in her throat, which progressed into a full on mucous bubble attack later in the morning.

Anaya and I travelled to Nelson, where we met Joanne for a bite to eat at "Bent Fork". It wasn't my morning for 50's memorabilia and bland eggs so I left rather dissapointed. We went to Joanne's beautiful abode where we set up Anaya's nebulizer machine and tried to get a handle on her secretions. Joanne stayed with her while I ran errands.

I went to the childrens consignment store to drop off some old sleepers and had an emotional meltdown. As I was labelling them with my number I came to Anaya's froggy princess sleeper. It's always been one of my favorites. It fit her for months. Suddenly I couldn't breathe, my eyes teared up, my heart split open and for a moment I saw myself sobbing my eyes out in front of other startled customers. That did it! I mentally grabbed the halves of my heart and forced them back together and sewed it up with self-assurance. She's still here, she's still alive, focus on the now - leave the past and future where they belong. Once settled I decided to keep the froggy sleeper, and bought Anaya a couple new warm-weather outfits. I headed over to Katie Sawyers to drop off milk coolers and proceeded to allow my emotions to flow. She leant me an understanding ear and gave me great hugs. We sipped spicy ginger tea and I allowed the warmth to seep into my aching heart and rejuvinate me.

I went back to Joanne's House and found Joanne and Anaya seated in the rocking chair still trying to get a handle on those nasty secretions in her throat. We decided that we would not take her to her scheduled chiropractic session. I went alone, still in an emotional space.

After the adjustment I picked up some blueberries to share at our planned group meet up in the park. We were to meet Anaya's milk donors or "Milky Mom's" for a blessing ceremony. Again I returned to Joanne's House. Anaya sat in a calm space and had cleared up considerably. I gave her a feed over the course of an hour and then we took her feeding tube out and put her hair in pigtails.

We walked to lakeside park and set down our blanket in the lush grass with the other mamas. We were joined by Rosalyn Grady, a spiritual elder, who led us in a ceremony of blessing for the mama's and their children. We each made a SEED BUNDLE TO REPRESENT OUR HOPES AND LIFE for the next generation. Then it was my turn to speak. I thanked the mamas for giving Anaya the gift of their milk. I explained how much it helps her, how much we appreciate their contribution to her health. Tears poured down my face as I relayed my gratitude and love. I then led the circle in a brief meditation on Presence. Katie gifted Anaya with a necklace from Divine Mother Ama- the woman who hugs.

We were joined by Jean and Claire - beautiful musicians who played music for us. It was beautiful. In all it was an incredible experience. I danced with a very healthy chubby baby and delighted in her joy. I danced with Anaya too, who seemed to love the music. Here are some more pictures and a video is to come.

Friday, July 16, 2010

Friday July 16, 2010

Penny and Anaya Wednesday evening.

Anaya has been having an excellent week. Her secretions appear to be well balanced and she's getting bigger. I'm also doing well this week. Smiles and laughter have reentered my life, thank god for the sunshine!

I promise to write more next time.

Sunday, July 11, 2010

July 11, 2010


The sun this past week has been amazing. Anaya enjoys the sunshine on her skin. Her and I danced in the grass. I held her up and spun her around in moments of joyous celebration of life.

I have come to know that she is a part of my life's greatest work. The legacy and mark that I leave on this world. The lessons that she teaches me, and teaches through me, the lessons that she teaches others, they are her life's work. It is so amazing how a little baby can be such a profound influence. Her innocence and sweetness touch everyone around her. Her beauty captivates my heart and inspires me to love more deeply than I have ever loved before. Her fragility reminds me that all life is a blessing and each moment is a miracle manifested.

When I kiss her cheek, and each finger on her hand, the softness of her skin is like rose petals. Her pudgy baby rolls yield beneath the touch like softened butter. It is part of her illness to be unable to metabolize fatty acids on a cellular level, thus she is becoming a pudgy baby Buddha. She is so cute, and it makes me smile, but I know that these fats are poison to her, that instead of giving to her life force they are stealing it away.

My rosebud has slept most of the day away. Last nights festivities at the community hall did not break through her sleep. I danced to the band while Anaya slept in the arms of trusted friends, and in mine. Amazingly, in the midst of the festivities, my brother Christopher and I spent quality time together and talked about life. The choices I make each day revolve around Anaya. My whole life revolves around Anaya at the moment. I am unable to see past the present into the future. I am unable to decide now what I will do after she is gone, for indeed it continues to seem that she is slipping quietly away from us.

The thought of missing her breaks my heart. For I already miss her voice, her smiles, her funny laugh and looking into her eyes and having her really see me. What will I do when I no longer have her baby cheeks to kiss? How will my life continue with the center of it missing?

Today I have kissed each finger and each toe in turn, attempting the memorize the wonder of it, the feeling of having my heart overflowing with love, and with gratitude for the gift of her presence in my life. I am reminded of how much love she has brought to me. How she has answered my prayers in so many ways. She has brought to me a family of community, a family of friends, hearts open wide and honest. We are loved and we are taken care of. We have a safety net of love supporting us and when we fall I know it will be there to catch us. I fear the vastness of my grief and I only hope that my fears are worse than the actuality of it.

"Believe in the Miracle" I've been told recently. I do believe in miracles. I hope for one everyday. It seems that the real miracle here is in what she has brought, and how she has connected so many of us in love and compassion.

Thursday, July 8, 2010

Thursday July 8, 2010

Anaya had a fantastic day. Penny came by and took care of her so that I could clean the house up for my family visit. I got the dishes, vacuuming and laundry done! Seems like an achievement in my world. My close friend Grant is visiting from Calgary and my father and brother are going to be here as well.

Anaya had her second dip in the pond today. Shelann and her boys and Amy's kids all came over for a swim in the pond. We had a sunny, beautiful afternoon. I think perhaps Anaya is becoming used to cool water. I got it on video again. It's soo cute. She didn't need to be suctioned at all today. I'm so glad. I hate making her gag.

Anaya has been seeing chiropractor Remi Champagne and she seems to have more mobility in her neck. I pray the things we do to help her benefit her in some way. She is my little love and I would give anything to make her better, or relieve her discomfort. The chiropractic seems to help as much as seeing the healer at Coyote Springs. I continue to give her homeopathic remedies to try to increase her comfort and maintain her health.

we're not certain but we (nurse and I) think she might be having seizure episodes. Remember a week and a half ago when I thought she might be dying? That may have been a seizure.

Not such a pleasant thought on such a lovely day.

Solara is looking forward to visiting relatives in Calgary and will be gone for most of July. I hope my little girl will have amazing growth experiences, though I will miss her dreadfully.

I'm always striving to maintain Presence and I hope with all my heart that I'm doing right by my babies.

Tuesday, July 6, 2010

Tuesday June 6, 2010

This is a picture from yesterday of Joanne using the nebulizer to help Anaya manage her secretions. Anaya is doing alright the last couple days.

We just returned from a family walk down to the general store. It is such a beautiful evening. Nice and warm with a light breeze. Solara found a snake on the road and we helped it get off the road and into the ditch. Hopefully it will stay off and continue to slither another day.

I love all the purple and white flowers growing in the ditch. I love Procter. I love Kootenay Lake. I love seeing all the beauty around me. Anaya enjoys going for walks. She really seems to relax and take it all in. We usually take her for at least one walk a day. I'm tired now and my creative energy is ebbing. Tomorrow I am meeting with Lisa and Rosalyn to plan a group tea for the moms that help feed Anaya with their milk.