Updates & My YouTube Channel!

Yes! You read that right! I started a YouTube channel! I'll talk about that in a bit, first, some updates on Bella. :) 

Day +54 (Today)

Bella has 2 very important tests coming up, one was done today. They are blood tests from her Immunologist and one from her BMT team. Both tests use her blood for a "panel" of results that they look at. One is looking at her Lymphosyte counts and the other is her Immune Recon Panel. As I had mentioned in an earlier post, Bella's current blood counts and results are very good, so good that they show signs that have her doctors thinking they may be able to see her T cells and Bcells functioning together already. It is usually too early in the transplant process to tell this right now, (in most cases 2 months too early) but the doctors are going ahead with testing it now anyway cause they may just see the evidence this early in Bella's case! So that's exciting rare news. 

I'll share the exact results hopefully later this week. 

Day +45

So Bella was officially off of all IV meds for post transplant and doing very well. Recently because of on and off low grade fevers at night for the last 2 weeks, she's been on IV antibiotics. Not a big deal but basically, because the blood cultures are coming back negative (thank God!) they are pretty sure it's been mainly teething fevers. They just have to be so extremely cautious, that for any fever over 37.5, they automatically put her on antibiotics. She is still infection free, no bacteria, and very happy and energetic. Them teeth are pop'n through tho! 

Day +45

On a sad note, Bella's eating has gone down hill. I'm really upset about it and quite often feel really deflated about it all. Our OT has been so good and is helping Lyle and I help Bella with her feeding, but after all we have tried, I'm just staring at a brick wall with this right now. All the foods she loved to naw on before, she won't even let me put near her anymore. We've been told to give her a break from trying everything so that we arn't 'pushing' her and making it worse. It's been a solid 2 weeks now since she won't even accept or hold food that I offer her. We'll see how this week goes. 

Day +54

Recently Bella's Gtube feeds have been going very well and she is back to tolerating 1hr bolus feeds. She hasn't been there since January I think. So her bowel motility is really good, she's not sick from too much too fast and she also has an anti-nausea med that is really helping her aswell. One of her meds (Cyclosporn) causes her to feel really icky so the regular use of this anti-nausea med eliminated that right away! So now she can handle 90mL of formula in 1hr that means she's off tubes more often in a day aswell. And she's not getting sick from it being too much too fast. So far her system is doing good with 2 bolus feeds in a day. She still has continuous feeds running at night so she gets her required amount of nutrients in a day. 

Day +53 She love love loves her sunglasses.

Seeing as these 2 important blood tests will show the doctors more about how awesome Bella's new immune system is building, that means they are talking more and more about discharging us. They also did more recent tests to see if she is still hanging on to those 2 viruses. Hopefully not but I'll find out this week. However, the RMH has talked about a special isolation protocol we can follow with Bella that is promising. So our chances of being able to stay at RMH (when we are discharged from hospital) are very good now. It will actually be similar protective protocol to what we will have to do for our house when we get Bella home home to Swift Current. So we will get some practice here in Calgary RMH for a few months first. 

My YouTube Channel! 

Man! I have really up'd my tech game well, in the last year. First I learned how to blog and now a YouTube channel! So it is called "Hospital Mom Hacks" if you search it on YouTube. I currently have 13 videos on there. I'll try to post a link to one of my videos at the end of this post. 

Here's why I did this: 

It's the right time. I felt there was a need. I wanted to help. 

Those are my main 3 reasons. For months and months I've sat for hours in Bella's hospital room and thought, "God, I am here for a reason, we are here for a higher reason. My energy is focused on helping Bella, my time here supports her, that's number one.  But this extremely rare and unique circumstance we have been in has a higher calling... I know it."

  For a while (what felt like forever) I just knew I needed to use this time in hospital for a greater purpose, there had to be. I didn't want this 2 year experience to just be That, and that's it. I just kept feeling like there has to be something I could do to help other parents in hospital with their little ones, giving what we have gone through. I finally thought to make videos on YouTube about tips and tricks I have learned. This would make it easy to share with other parents in hospital. Knowing nothing about YouTube, Lyle helped me a lot and we got the channel all set up. I'm still quite the rookie, saying the blog address wrong, and "um" a lot. Ha ha. But now that I can start to work on sharing my videos, all I want is to help some other mom or dad out there. 

This is the article one of the coordinators at RMH put in their newsletter! I of course wanted to let the families in the house know about my channel incase my tips could help them, so our wonderful RMH coordinator put it in the weekly newsletter! She also thought it was such a wonderful idea that now, I am set up to have meetings with the Communications Director of RMH because they want to promote my channel! How awesome is that. Now I'll be able to help more families faster. I'll keep you all updated on my channel's progress. :) 

Here is a link to the first video I added to Hospital Mom Hacks: 

https://youtu.be/hcWt-l5-8_k

Enjoy! 

And share Hospital Mom Hacks with anyone who may need it. I'm also open to ideas for videos aswell. I just want our experience to help in anyway, and hopefully make other hospital parent's lives a little more stress free. 

Updates & Mother's Day Fun

Bella has been doing so well. As you'll notice in this post I have a lot of good news to share. 

Day +40

We have been getting outside a lot! It is the safest place for Bella to be at this point. Bella's counts have continued to remain stable and are looking great. Her ANC is staying well above 1000. 

Day + 44 (walking around UofC campus parks)

As of today (day +45) Bella is officially off all Meds given by IV! This is so awesome! We can spend all day outside if we wanted to, no IV pole to follow us around. Now, her central line is used for mainly blood draws which they are usually doing 3-5 times per week to check her levels and counts. Now that all her meds are given "orally" (directly to her tummy via her Gtube) it's been a little harder on her tummy. But we are doing our best to space her meds better throughout the day and give her tummy breaks from too many at once. 

Day +45

Can  you tell she's been in hospital for a while? She is content with the mask while we go down the hallway to outside, and if you look closely at her hand... Yes that is her med syringe. She likes to play with them, a lot. 

It has been 1 month and 2 weeks since Bella's BMT. And on Friday it was exactly 1 month since she engrafted. So far we haven't heard anything from Bella's donor, but that's ok. Still a lot of restriction on contact right now. I ask our team of she's called to check on Bella's status (which she can) but our team has no details to relay on that at the present time. I really do hope we get to meet her in the future.

Some rare good news: Bella has not needed any IVIGs in the last few weeks! This is rare, since it it common for kids after transplant to need this immune boost for the first 6 months post BMT. But Bella's body is already maintaining its own IGG adequate level! This is a very good sign meaning that her new cells are doing great. 

Bella's next look at her new cell function and how her new immune system is working is on day +60 (end of May). This is called her Immune Recon. Panel Test. This will give her doctors a real good look at how her cells are functioning. After this test is when they will think more about discharging us.

Lyle posted this on Facebook this week and my response made for quite a good joke: 

My response: 

LOL.... Ahhhh.... Yep. 

So seeing as we are closer to discharge, our nurses are preparing me for Bella's Central Line care! Yep, this will all be done by me when we are discharged, so I gotta start practicing now. I have already done her sterile dressing change, cap change and this coming week I'll be learning how to Hephrine Lock her lines. 

Like I said before, I bet I'd do a pretty good job at challenging a RN test if that was possible. Haha Anyway, Bella needs to keep her Broviak IV (in her chest) for quite a while still. They will continue to do a lot of blood work for months to come. And heaven forbid she gets sick, but these lines are life savers when needing to start Antibiotics ASAP. It's quite nerve racking to take on her full line care, but hay! I'm up for the challenge, bring it on! The dressing change involves cleaning and securing the line on her chest. The cap change involves untwisting the cap at the end of her line, the line that leads directly to her heart, cleaning around that area and putting a new one on. The Hep lock means injecting this, only so far into her line in a certain way so her line stays accessible and doesn't clog when they need to draw blood. 

Mothers Day

Day +45

Today we went on a super long walk with daddy too and fed some momma n baby geese. They were so cute! Bella is loving being outside more. She dances, bounces and babbles in her stroller. She loves to get out and walk as well. 

This is what I posted on FB today. It weighs heavy on my heart, knowing  what heart ache this day can actually bring. And I hope it's transformed into peace. A beautiful friend of mine (Bradie) sent me a good read today for all the strong hospital Mommas. It's is a good read: 

http://uofmhealthblogs.org/childrens/hero-stories/to-mom-of-child/22562/ 

Mothers Day Spa Day & High Tea at Fairmont Paliser Hotel, Calgary. 

The Ronald McDonald House treated us moms to a beautiful spa day last week. They spoiled us and it was so sweet. 

We took a Limo to the most beautiful hotel in Calgary.

We were treated to the entire spa pool, sauna and hot tub area, and high tea in the Historic Rimrock Room restaurant with the original fireplace in tact and untouched. We were served a beautiful lunch with the tea and then wisked away for massages and pedicures! 

The egg pic is my first taste of Caviar. 

Happy Mother's Day to all you lovely momma's that I know in my life. 

Free Verse

I have to admit, I have been truly blessed with how well Bella sleeps. Given, she has spent 99% of her naps and nights ( ny nys) in hospital, she is such a good sleeper. 

Recently I have had a few nights with Bella where it 'all just hits me,' and I remind myself I need to take these moments in. I finally had a chance to write some poetry the other evening after Bella went to bed. 

I miss writing. I miss drawing, painting, all the arts I used to make time for. I finally took the time for 'a moment,' and transformed that memory into a poem. The "moment" I'm talking about are all the ones I have with Bella, every evening, as she sleeps in my arms right before I put her in her crib. The way these moments come to be, our circumstances, the situations... Sometimes it 'all just hits me' in that moment, as I'm holding her, as she sleeps in my arms. 

NyNy Time 

"Ok baby, it's nyny time,

Let's get pjs out...and everything else."

She giggles from her hospital crib

Those ice blues eyes glance at me

Wait...take a second 

She's smiling, playing

Take it in, breathe

She's happy

I grab her pjs from the hospital closet

These still fit? She's lost weight 

But she's growing. Ya, they'll fit.

Wait...can't give her nyny cuddles yet.

Feed pump set, check

Gtube cleaning supplies, check 

O2 toe probe, check

IV lines untangled, labeled, check

Quick! Move her hand, she's grabbing her IV line.

Oh ya, check her diaper.

Give her a kiss.

"Ok baby, mommas gotta get all your stuff done before nyny cuddles."

Nurse comes in, put her down.

She checks her vitals 

Wait...grab the BP cuff

Help the nurse

"It's ok baby, nyny cuddles soon."

Don't cry, don't do that

The nurse might see you

Your fine, Bella's fine

Don't do that right now

The nurse might come back in

You'll get to hold her soon

Now hurry up and finish

Gtube,IV,monitor, O2 probe, leads...

"Ok baby, just a couple more things 

Mommas gotta do and then I can hold you." 

Lay her down

Gtube clean, check

Line dressing secure, check

O2 probe on check... Plug it in

Monitor on, stats good? Yep.

BP cuff on, check

Wrist brace on, check

Wait...she's upset, calm her down

Hurry up, she wants to be held

Change her bum, fast.

Her cheeks are red, she's hot

Fever? Please no, she feels ok

Check your own BP

Focus! She's fine

Probably just teeth 

Teething is normal, please be teeth

Calm down

Probably just teeth

Maybe gas

... Yep, gas.

Sigh of relief, normal baby things

She's ok

Breathe 

Don't cry!

She's strong, your tough

"Ok baby, Shhh. 

Mommas gonna put nyny music on."

Grab the speaker

Songza, Acoustic versions of pop songs... always good.

A bit harder not to cry now

Hold'em back

Nurse may come in.

Wait!... Forgot to plug in her IV pumps

Quick! Before they beep 

Breathe 

Pick her up

Nyny cuddles time... Finally.

"Ok my sweet love

Shhhhh... Mommas got you

Time for nyny's."

Hold her close

Hold back the tears

Hold in the pain

You'll be home together soon

Don't cry, don't do that 

She's sleeping in your arms

Take it in

She's just fine

Just take it in

Don't let the flood of thoughts

Drowned your eyes with tears, 

They'll drip on her

She's going to be just fine

She's going to be great.

The 3 of you

Under 3 different roofs. 

Don't think about it

It makes you cry 

Don't look at all the lines coming from her, don't compare,

Don't worry.

Breathe, wipe the tears away

Go to bed

You need to eat.

One last look at the monitor

She's good

98, 100, 99, 100, 100

Heart rate, pulse

108, 111, 115, 112, 108

Got to bed

You need to sleep.

Breathe

Look, she's sleeping so well

Go to your room

She's good.

Wait...one last prayer

God, protect her, please

Keep her strong, she's so strong

Give her peace, joy and a happy heart

Give her the want to eat, drink.

Keep her brave, no fear

Help the doctors, Lord

Show them everything they need for her. 

No pain, no harm, she is protected.

And God, just a lil more strength in me, just a little more relief. 

Amen.

Ok, off to bed

More nyny cuddles tomorrow

Go to your room

Relax

Breathe 

No ones around 

You can break down.

Bella's Feel Better Friends Doll

What a blessing for our baby girl. They say the best gift you can give, is your time and boy did our volunteer crafter Paula do just that. 

Thank you Paula.

Through friends from the town we used to live in, we connected with a wonderful lady who is a volunteer for this community of crocheters; Feel Better Friends. They make costom made "mini-me's" for sick kids in hospital. 

It took me a while to fill out the online form, and I was still blown away by the detail Paula put into Bella's doll and all her accessories. This was a huge gift from one very talented lady.

Bella loves her doll! She even gave it kisses! (I missed those moments on camera) Bella loves that her dolly has a soosoo too and couldn't decided which one to take so she tried both! She even tried to put both in her mouth at once.

Bella always tries to take her Dolly's headband and put it on her own head and she loves playing with all her Dolly's necklaces. 

Her doll also comes with matching mermaid tails for both dolly and Bella! Bella loves the little mermaid dolly too and giggles everytime she plays with it. 

Her dolly is so detailed! Paula even added the detail of Bella's gtube, Broviak line, diaper, belly scar and wrist brace! And under those pretty, sparkly shoes, the two of them even have matching socks! So sweet. 

Bella's dolly comes with a detachable wig of how her hair was before chemo. And when her hair comes in again, she can get another wig for her doll! 

Because this wonderful company is made of hard working volunteers, they need the support of donations. If you feel the need to give to help this great community of crafters they have a GoFundMe page. Here is the link to the FBF website: 

http://fbfdolls.org/ 

I'm looking forward to them posting a blurb of Bella receiving her doll on their FBF facebook community page but the Admin need time to update the page and watermark Bella's pictures. 

I love how so much of this gift is a keepsake for Bella. She received so much from this gift and I know it helps her through her hospital stay adding a bit more fun and giggles to her day. 

When signing up to receive a doll, the online registry offers a section where you can write a note to your child. So of course I wrote a little something for Bella that I hope she loves and understands when she's older: 

Thank you again Paula Weber. And thank you, Chantale and Dave, for connecting us with Paula. 

What a gift of talent, kindness and love.

Who Let the Girls Out?! Who...Who, Who, Who,Who!?

Well, Dr. Wright (Bella's Immunologist) did, that's who. :) 

And we're happy about it. :)

Day +34 (Tuesday, April 28th)

Last week I had mentioned that we probably won't be able to let Bella out of her room until Day 100. That was a cautious choice by her BMT doctors because again, she is the only 4th rare SCID case they have had. They decided on Day 100 because that is a landmark day when they will know for sure how well Bella's T and B cells are functioning together, aka: how strong her immune system is. (Interesting side note: Bella's Day +100 with be July 4th!) They then had a discussion with Bella's other head doctor, Dr.Wright who was confident in letting Bella outside  at this point. Bella's counts have remained very stable! So we can go for walks outside! But we have to be strict about where we go. Still no public places or other people allowed. Hence her fun stroller sign. 

This is Bella dressed up to go for a walk on the warmest day last week. We never got to go out. I had never felt so sad. We just got our "ok" for outside passes, it was the nicest day, and one simple blood pressure issue ruined our chance. Bella only has a certain timeframe in a day where she is off iv med lines. When her BP is too high they have to keep a close eye on it, and if it continues to stay up, she needs a med to bring it down, then they monitor some more. Right before we were ready to go, her BP issue started. It was never anything serious, and 2 of her current meds cause high bp...ugh. But! She had to be monitored and ended up needing her med and after 1 1/2hrs our chance to go outside was up and she had to be hooked up to her iv med. 

I immidietly broke into tears. We just wanted to go for a walk. Something so simple made me cry so much. Bella was fine, she was just have'n fun putn on hats and shoes and watching mom fiddle with her stroller. 

Cheering with daddy. 

Cheering with mommy.

So how has Bella been?

Our fierce little firecracker is back to her energetic self and I'm so relieved. Although the extended nuzzle-cuddles are a little less, I'm so happy Bella is back to the energy she had before transplant. She is crawling again and standing at her crib, couch surfing around her crib and even dancing! 

We had some fun with matching headbands! The morning I came in with this yellow headband on (Bella had never seen it before) and she noticed it right away! As soon as she saw me she tapped her head and spoke with a little glee saying, "Ah haaaa!" 

Day +35 Bella's first tub bath in over 5 months! Since this past week is the first bit of time she has been able to be off of iv meds for a while, we can protect her entire Broviak site/lines with saranwrap and tape. So she can splash to her hearts content! 

Exactly a year ago today we did not know Bella had SCID. It breaks my heart to know the major danger we put Bella in allowing so many cousins, family, friends, people around her,off of isolation. I know, we didn't know... It still breaks my heart. In the 2014 pic she's held by her cousin Bethany Wiley, and what a precious moment, because it will still be a long long time before Bella can be in the comfort of her cousins again.

Timeline Update: Bittersweet

The Bitter: Cost of Discharge

The Sweet: Being Discharged! 

So yes, our doctors are talking about it...discharge. The day when Bella does not have to stay in a hospital room anymore. Discharge means she gets to stay with me at the Ronald McDonald House! And we stay in Calgary because when we are discharged we then start going to clinic. Which is down the hall from the Unit she is staying in now. So I would take Bella to clinic daily at first, to maybe twice weekly.  It all depends on how she comes off her last iv med. Basically we stay at RMH and visit the ACH clinic when her doctors need to see her, do blood work, ect. This is all part of the monitoring stage from now, until we are back in Swift Current, we do the clinic visits. She may be ready for discharge in about 2 weeks from today. 

This is a timeline I wrote out for myself to take an estimated look at the year coming up.

So although it will be sweet to finally be out of hospital with Bella, there is a lot of cost to come with discharge. Every med Bella is on, we start to pay for. All of the supplies to care for her Broviak line and Gtube, we pay for, Her specialized formula... Yep...we pay for. 

No doubt about it she is a million dollar baby to our health care system. If only the newborn SCID screening was in place. That would of chopped off an entire year of stay in hospital and probably 4 of Bella's surgeries. (Ugh... I don't want to think about that, too painful.) 

Dr. Wright told me there has been a study done. The medical costs of hospital life when a baby has been screened at birth for SCID is around $370 000.

When a child is not screened/diagnosed at birth: $1.4 Million!  And yes... Bella passed the 1.4 Mill mark.

These are the med sheets for all of Bella's current meds. There are about 15 that she's on now and ten of those she will still be on when we are discharged. Bella's pharmasist goes over these meds, and any med changes with me weekly. We are doing a lot to prepare and it'll all be ok. 

Lyle and I want to thank you all so so much for your support financially through Bella's GoFundMe site, through family and friends... We humbly thank you. The Kinsmen are also actively supporting us aswell, and when Bella is discharged our Social Worker will also help make sure every financial support avenue is covered as well. 

Discharge time and when certain meds are done all depends on Bella, and how she improves and how her immune system builds. She may be on some meds for up to a year post BMT. I'm a little nervous because Bella is still positive for Entero/Rhino virus and Rota virus... This means she is not aloud at RMH. It would truly be so much harder to not be able to stay at the Ronald House (RMH). We are praying Bella clears these viruses before we are discharged so we can keep our RMH room. Anywhere else brings on the burden of more costs. The doctors say her new immune system may not be able to clear the viruses until June, but it's possible she could clear them before. Even if I could take Bella to RMH she'd be isolated to our room there and not aloud in any common area. But at least with the baby monitor, I could zip downstairs to see other adults, other humans, have supper with friends or be able to just walk Bella across the street for clinic visits. Anywhere else, we would not have that. RMH is a huge blessing, huge. 

Because Bella went into Transplant with these 2 viruses, is why she still has them. Until her immune system can function enough to fight the viruses off...she is positive for them. She doesn't have symptoms and it's just a "carrier" state but she's still positive. Bella is improving very nicely and even engrafted a little earlier than the doctors anticipated. Hopefully she'll keep this positive streak going and rid these viruses asap. 

Some interesting news:

Our BMT doctor informed me last week that the team of specialists from NewCastle, Northern England are inquiring about Bella's case. They know about her story, her BMT and are following it very closely and talking about her with our Calgary team. Pretty neat eh! She is very rare and advancing very well, so they want to know all about her successful case! We have of course, signed papers to allow Bella's team of specialist to be free to use Bella's case as research, and shared research,etc. We want her situation to inform and educate as many as possible, to help as many as possible. 

We are glad that is happening and her case has recognition from specialists around the world! 

1st Chimerism Test Result!

Sweetpea all dressed up to share the good news! 

Her first Chimerism (How much of her is donor cells) test came back today and her Tcells are 100% donor!! This is the best possible news for this blood test. This means the donor cells have taken over here. If you remember my prior explanations, Bella did not have an immune system because her Tcells and Bcells did not work. This test shows the donor cells have taken over 100%! Her docs have reminded us how rare Bella's case is, she is super rare. Out of the 4 SCID patients or any other child who has had a BMT, (they all are different)... Bella case is the most unique. So based on what they do know they would be happy if her test results were above 30%... so 100% is the BEST possible outcome. Thank you Jesus! This is amazing.

The next test (a month from now) they will look at her Tcells again as well as her B cells. The % that is donor is important, but their function is just as important. The bcells and Tcells have to talk to each other and function together. Bella's Tcells may be all donor, her bcells may not be, and that's ok as long as they both function together. Her Bcells could come back as all donor as well, or a mix of her and donor... They just have to function with the Tcells. We will find that info out with the next Chimerism blood test. 

I have said it is amazing that Bella has come through the chemo and the transplant the way she has. Minus the sepsis attacks prior to BMT, she never got the severe Mucocotis sores in her mouth and she never got the severe bum breakdown that the chemo meds can cause. However, her doc did say Bella is the sickest SCID patient he's seen go through this process. (Out of only 20 SCID related cases he has personally handled)  He believes her hard times post BMT are most likely do to her fluid imbalance, that has proven tricky to handle. This can be a common issue with babies regardless, but with Bella's particular case...she's the worst he's seen. But! She has pulled through like a champ and they are so happy with how she is doing now, they are very pleased.

Tea Party

Timeframes and Isolation 

From the beginning they have told us expect to be in hospital for 6-9 months post BMT. So at the earliest we could be home with Bella by September 2015. This timeline is based a lot on the timing it takes for Bella to come off of all the meds and they also must monitor her for specific amounts of time after each med has been discontinued. Keep in mind she is a SCID patient not a cancer patient. They have done many BMTs with cancer patients... Four, for SCID patients. This is about protecting her new immune system, and not exposing her to any risks. The BMT for her is meant to only be done and needed once! We do not want her going through this process again because we risked and compromised her system too early. 

We must be on strict isolation post BMT for roughly 3 months, until Day 100. This means she's not allowed outside her room, at all until the beginning of July at the earliest. That's why when we accidentally got outside last week, it was a big no no. This 100 day room isolation is because they need to make sure Bella's cell function is adequate before it is safe for her to even risk going out of her hospital room. So hopefully by July we will see they begin to allow her "outside passes." They can only do her cell function tests once per month. To see adequate cell function takes at least 3 blood tests, so 3 months. 

Bella wearing her BMT necklace. 

This is her necklace that has the bone that matches to her donor's necklace. We haven't gotten word of anything about our donor yet. I may ask again tomorrow, but still haven't heard if she  received her card and gift yet. It didn't get sent back to us either, so looks like One Match approved our letter and gift for the donor. 

We stopped in the Swift Current hospital when I was home for the weekend and dropped this card off to the nurses on the maternity ward. I wrote a note on the back for them aswell. Since our short stay in October in the ICU there, I haven't had a chance to update them. Living in hospital for over a year, I see how much the nurses that have cared for Bella, need updates like this. I have also sent emails to Bella's nurses in Saskatoon, RUH. 

When I dropped off the card I was happy to hear the one nurse say she was my nurse when I went into labour. The Swift Current team does not air lift emergency newborn cases often, so I can understand how much of a heartbreaking day that was for them aswell. Bella's story, blog and updates are serving a great purpose. I'm happy and humbled when I hear how much people check the blog and appreciate the updates.