SCID Awareness !

No one you know in your family has ever had an immune deficiency. You give birth to your baby girl, she's soon 3 months old. She gets an ear infection. She goes into cardiac arrest. She dies.

This happened to a mom, a family here I know at RMH. How crucial is it to you now, to be aware that SCID screening is not happening in every province in our country? Only Ontario at the moment. 

Now think about Bella. We just found out in Novemeber 2014 she was born with an immune deficiency. She survived an entire year without anyone realizing. 

I constantly lose my breath and then try to catch it again, when so many scenarios run through my mind that have happened in the last year. What a protection from God she has over her, what a miracle she truly is. And now, we have the knowledge to help her, the BMT to cure her. 

Lyle's cousin Nicole wrote this note to me and it means a lot, thank you Nicole. 

"Your baby girl is a living breathing miracle for sure! I just finished reading up on SCID and it angers me that this isn't a Canadian wide screening process for all babies. (http://immunodeficiency.ca/wp-content/uploads/2013/08/SCID.pdfAltho)ugh Bella had other obstacles with the Hershprung's Syndrome it put her in a compromising position getting vaccinations while having SCID. I'm so happy you are finally getting answers and we are praying for a match and a speedy recovery for Bella as soon as possible. She is a fighter for sure. Love the Blog and I hope things keep positive and you are feeling lots of love and support. Take care ♥

~Thank you Nicole

I have had a long discussion with Bella's immunologist Dr. Wright. She is advocating for Alberta as we speak to have a SCID screening process in place. I'm sure you all know where I stand on Saskatchewan's children's medical needs. Argh. I wonder, by the time I become an immunologist, Sask. Children's Hospital will be built...career change? It would be worth it, but for now we at least need this screening in place. It could have saved babies lives already, it could have saved Bella from so much pain in  hospital this past year... We could have been home by now.

She's a Daddy's Girl !

Warning: Super cute Bella Beauty Bombs ahead! 

Bella loves her daddy! Right from it being her first word and favorite word to smiling soooo huge when he walks in the door. 

With the amount of people (adults) Bella sees in a day, she has always known when daddy's here! 

Many nurses will ask me where Bella's dad is and we've had a few joke about his existence. But those are obviously the nurses Bella hasn't seen on weekends when Lyle is here with Bella, letting me sleep in and catch up on life. They soon come to understand Lyle is around and his work schedule has been flexible enough to make it here to Calgary every weekend. 

On the real real hard weeks (which there are a lot of) I always wish so so bad Lyle could be here the whole time, as does he. But then we have those funny conversations on the phone where I put Lyle through my usual begging, I say, "Pretty Pretty please, just quit and stay here with us, please... With a cherry on top." And then he says, "Would you like a house?" Haha 

And I snap back to the harsh realities we are living. 

As much as I've broken down, wishing Lyle was here to prop me up during the week, I understand it just can't be.

During these holidays its a different story, Bella's getting tones of daddy time and mommy's getting "catch up to life" time! Yay! The nurses always are complimenting Lyle with how they have never seen a little girl light up for her dad as much as Bella does. So endearing. Notice the ring on his hand ladies! Haha 

While I catch up with a morning sleep in, Lyle does his amazing daddy duties with Bella and while we are all together as a family, he hogs her. They play, rough house, and I swear he gets all the good giggles out of her. :) 

Hulk Had Arrived

Yes... Yes... Unit 2 nurses have seen the rath of Momma Hulk this week. :( 

I completely understand the tittle "Momma Bear," well, I have for a while now. Just didn't think things could still get worse. Bella's fine, it's me that's not. 

When things build up I'm sorry, but my purple pants rip off and I turn green, it's not pretty but it helped the end of this week go better.

With all the complexity of Bella's scenario and things going on, there have been way too many days where I feel like I'm holding my daughter down for someone to check her over for way too many hours in the day. And then to have her frustrated or in pain on top of that and see her cry is agonizing. 

I try so hard to prevent these types of days and give her more time to play and be free, not poked and proded. 

I'd love to catch up with a restful break in a day but more than that I want to catch up on our mommy daughter time. The moments in a day where we just have fun or snuggle. I thank all of you for offering your time, it's so needed but oh so tricky. Anxiety is a battle im fighting because with all the past and recent mistakes with her care I'm too anxious to leave cause there have been too many times (thank God I was there) I caught a mistake and saved her from more pain.

So how do I leave her with that on my plate but how do I not exhaust myself.

I feel it's lose lose for me right now.

After a stressful scenario on Tuesday evening and Hulk had left for the evening, the nurses and doctors have been more supportive in solving this problem that has gone on too long. They have helped organize Bella's care plan better and support me so I can just be mom for Bella. 

And what a stress for Papa Bear eh! Shout out to my hubby Lyle. Baby, I can't imagine having to work, maintain a job, keep up our acreage, etc. while Bellla is far away in hospital. 

I fall apart without you here and I fall into your arms when you arrive. I love you and your strength to keep our amazing Swifty Life in tact for when we can finally make it back there. 

13'x17'

So that's the size of space Bella has been in and she must stay in. (And I thought it was hard going to the malls last Christmas season and seeing all the new moms with their babies out and about.)

I can't express the agony that comes with isolation. I know we are protecting Bella and it's a must, but I want so bad to show her the world... It's is hers anyway and she'll be on top of it soon. 

So what do we do in Bella's room all day anyway? I tell ya, you gotta get creative! Embrace the insanity that comes with cabin fever. Haha

Well, we keep pretty busy and I get Bella over to her window quite often for fun exciting play times. 

What she loves the most:

Jolly Jumper- I'll unhook her and we'll bounce around the whole room. She loves looking like a floating baby when people pass by going to the family room. That always gets laughs.

Physio- Bella gets in a bunch of rolly polly positions on her big blue floor mat, in her crib and by the window.

Dance'n- We dance everywhere in the room! And sing... So I'm surprised with windows are still in tact, that's a plus. 

HighChair- lots of snack time and food play in that new seat.

Bella's room: 

BMT - Current Process

I posted a pic outlining where we are at with the process of Bella's Bone Marrow Transplant. Basically the search for a donor match has officially started as of yesterday! 

More Current Details:

-Bella's doing great, happy and feeling good.

-Lymph Node biopsy shows no Lymphoma! Good news, so no cancer issue.

-Lots of blood tests are still pending.

- Currently Doctors are doing Pre-Work up stuff and determining Bella's baselines before Consitioning treatment/different meds and BMT begins.

-We are happy on Unit 2 and when we go to the Oncology Unit 1 for her Chemo/BMT, that will be up to our Immunologist. For now we have to keep Bella's door closed at all times.

-She's on meds to help with a few things given her current immune system state ex Prendisone. 

-Her Gtube is workin great and she is doing very well with her oral Food Play Tasting with Purées, cookies, crackers,etc.

Because her current immune system can't fight bacteria and viruses like yours and mine, Bella is also on meds to help her system with that. So to fight the bacteria she had in her lungs from aspirating, virus she had since October, skin exema,etc.

She's Popular!

So this list is of everyone following Bella at ACH. Now just imagine seeing all these people within a week, a day, sometimes even a morning. Then imagine them telling you new information about your daughter, daily. Now imagine if some of that information is scary, hard to understand and it's only the first person of the day, then you can't process what one specialist just told you before the next one walks through the door. 

You Keep Calm... And Stay Strong. 

1. Daily Nurses (3 in 24 hours)

2. Rounds Doctors/Blue Team (Complex Care Team: Pediatrician)

3. Child Life (Playroom, Bella's schedule, Toys, Beads of Courage, Volunteers)

4. Resp./Lungs (Pulmanary)/ Cardio

5. Surgery 

6. ENT (Ears Nose Throat)

7. Infectious Disease 

8. OT

9. Physio

10. SLP

11. Dietician 

12. Dermitologist 

13. Genetics 

14. BMT team (Bone Marrow Transplant)

15. Immunology 

16. Plastics/Neuro (For her right arm and wrist)

17. Social Work

18. Gtube Nurse

Aaaand... I'm probably forgetting one, no kidding. 

How to post comments/questions

Instructions on Posting Comments/Questions: 

With much help I have found some helpful tips for those of you who are more like me and Hulk out when using technology. ha ha 
Please pass this on to the non-Facebook users you know and tech challenged people like myself. ha ha 

I'm very open to lots of comments and questions on the blog so don't be shy to ask. Here's what will help when you want to post on Bella's blog:

The main issue comes where it defaults to not allow anonymous comments so as to avoid spam. So you need a Google account or accepted ID to leave a comment. When I'm lazy I'll comment as anonymous  cause I don't feel like logging in to my Google account. 
When you leave a comment or question just be sure to sign your name in your comment so I know who wrote what. The people with pictures beside their names in pink have Google accounts. 

How to leave a comment:
1. Write your comment in the comment box, type your name as well.
2. Comment As: choose "Anonymous" in the drop box if you don't have a Google account.
3. click "publish"
4. It'll as you to prove your not a robot, (spam protection thing) do that
5. click "publish:

And that should work. :) 

Medical Update: Dec 12th, '14

Below I posted pictures of some of the notes I take in my 15 section binder of the 20 (yes 20, not counting nurses and residents) medical specialists/doctors that see Bella daily/weekly. I have to write things down in a binder with sections to keep things straight because sometimes within the time frame of Bella waking up at 8am - 12pm... 10-15 different people have cycled thru Bella's door. This may be for tests, blood work, updates, checks, assessments, physio, etc. So I write it all down.

I think I should just wear a Scrooge hat for now so people arnt so surprised when I respond to them. But honestly, most days I can't process fast enough to get a proper sentence out of my mouth. Today the Nurse Practioner for Bella's BMT team popped in to introduce herself to me. This being at 4:45pm today, after a bad morning, Bella barely napped, I'm stressed cause with everything going on I feel like I never get just mommy time with her... So I'm Scrooge. 

So this lady barely gets a sentence out and I interupt her and im like, "Look lady, I'm not Gona remember who u are or what u want unless you write it down and I got my hands full with a dirty diaper and a kid that hasn't nap'd right now, so either spit it out in one sentence or write it down."

And she goes on to give me the whole shpeal... Bless her heart I look at her and tell her in my kindest Scrooge tone, " I'm not Gona remember any of that."

Notes: 

1. What we know and r waiting on

2. BMT process, simple outline for the current info we have on Bella.

3. Notes I leave in Bella's room for the nurses and volunteers when I am gone for a meeting with a doctor. 

📷 Bella Beauty Bombs 💥

Monthly pics of Bella since birth. 

Bella's Past Year in a Nut Shell 🌰

In 2 pics I wrote out a summary of where we have been and what hospitals Bella's had to be in, along with a short summary of the major things that happened by date. 

7th Surgery

The picture with this post outlines all the procedures Bella had done in her most recent surgery Dec.3rd,2014. 

Just within the last couple weeks, since our Immunologist specialist doctor got involved with Bella we have understood more whys and how's with everything that's gone on with Bella. 

That long conversation with that specialist was particular hard on me. Realizing why my daughter has been suffering for 11 months and not knowing a lot of answers, thinking we solved something after every surgery, yet complications come up and we never get to go home. It was hard, a hard long hour conversation of the Immune doc telling me about how certain she is with Bella having SCID. 

So on top of all that we are still waiting on a lot of results and confirmations for Bella's condition. 

This 7th surgery is part of that. They needed to find out a lot from this surgery to know how to treat Bella properly and what medication they can give her moving forward with a BMT. 

The surgery was from 8:30am- 1pm and she came out so strong! She never needed the PICU or Intubation like they had planned on. :) She was the best looking out of any other surgery she's had. 

Meaning Behind the Title

Matthew 17:20 is my faith based inspiration for the title of Bella's Blog. It has also held a lot of meaning for exactly what we have gone through with Bella. It's been a test but she's a fighter and we have faith that nothing is impossible for her. She will grow strong and healthy!

This scripture also has faith meaning connected with my tattoo.  Bella's moving  mountains by making it through each surgery and scenario even stronger. I had the 4 mountains for my tattoo as her 4 major surgeries. She technically had 6 at that point (2 minor surgeries for 2 separate broviak iv lines.) Now she just had her most recent surgery so technically she's had 7 surgeries so far! 

Bella's Mustard Seed is all of our faith combined and it's planted. That faith is going to grow and Bella is going to eventually come home stronger than we've ever known her. 

Thank you all for your prayers, love and support. 

Medical Update:

Thank Goodness Bella has a double lumen broviak central line so no more pokes for blood work. Sewing this line in her chest was 1 of 5 different procedures done in her most recent surgery (7th surgery) which was on Dec. 3rd, 2014.

So Bella's HLA typing has begun. They need to take a large amount of blood from her so in this pic she is receiving a blood transfusion. (Her 7th blood transfusion since she was born.)

So Thank You to all of you that give blood!!!

The HLA typing is the beginning of the BMT process. 

She also received more Bday presents from ChildLife and the Unit 2 staff. :)

Her beautiful headband was knit by one of the generous moms staying at the Ronald McDonald House.

#RAK #Pay'nitForward #Love&Support

I received this beautiful letter and gifts from ladies I don't even know but have talked to on this amazing Tough Moms group from Swift Current. 

You ladies/families are so so kind.

~Thank You ~

GoFundMe Support Site

Our friend Becky Warnke,  blessed us with this amazing way of support.

We can't thank you all enough. 

Here's the link:

http://www.gofundme.com/BringBabyBellaHome?fb_action_ids=10152584320699037&fb_action_types=og.shares&fb_source=other_multiline&action_object_map=%5B640841179378471%5D&action_type_map=%5B%22og.shares%22%5D&action_ref_map=%5B%5D

After talking with my step-moms daughter-in-law ( the amazing photographer Bobbi-Jo), Becky (who was a stranger to us) saw my need for support and given the huge huge heart she has as a tough mom herself, set this site up for Bella.  

Becky, I cry every time I tell someone how you suprised me with this blessing and what it's done for us. 

Thank you.

Better Bella's Chances for a Match!

To understand more about what it is going to be like for Bella to go through the process of getting a Bone Marrow Transplant and to better her chances at finding a donor match (getting on the donor registry) please take a look at: www.onematch.com 

Please understand that we are so very thankful for all who can help with finding a match sooner for Bella. But please remember that through the donor registry I think you have to be willing to also be a donor for anyone you may be a match for. But this is life saving stuff, so it's worth it! 😃(and I think it starts with a cheek swab kit.)

They have told us finding a match for Bella could take 2weeks-3months. Hopefully it won't take long. They are just starting the first part of "typing" Bella's blood this week. 

Starting Bella's Blog

So this is my first time ever making a blog, wish me luck! 

My intent for this Blog is to update all of you amazing family, friends and supporters on our daughter's current medical journey. 

It's been 1 year since our daughter Isabella was born and also since she has had to be in hospital. I'll share tidbits of info about Bella's past year, our "hospital life" and our glorious 1 month at home in Swift Current, Sask. But mainly, from here on out I'll utilize this blog to post updates about our fierce baby girl and the strength she'll show us as we now realize she must endure Chemo Therapy and a Bone Marrow Transplant to fix her current severe Immune Deficiency.