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 http://shortandsweetphotography.ca/my-blog/2010/11/anaya/ 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.