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.

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.

Merry Christmas Anaya!!

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 awful...like 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

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.

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.

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 www.eatsonfeets.org
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.

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.