Nothing Heals the Past Like Time / Sept 2018 - April 2019

Bella: 7 months, recovering after her 4th major bowel surgery.

Waylon: almost 7 months, learning to roll. 

Nothing Heals The Past Like Time

 Every new day he brings me back to where Bella was at that exact age, at that exact time in her life or that exact day... and he heals it. From the moment I caress his smooth un-scarred newborn skin, I can exhale relief. My hand softly brushes his naked tummy and for a bit of time it's like I'm erasing the scars from hers. Physically they are still there, like a road map on a precious girl's tiny body, reminding me of the journey we traveled before during and after each one. But with my newborn son, his clear, soft skin is instead erasing the scars from my heart.  Every new day from the time he was born is a day full of 4-5 years of memory for me. The painful ones try to take over my day.  Theres no avoiding a date, a new one comes every morning with the sunrise. And burned into my mind are the good, bad and ugly of every day throughout Bella's medical life. They'll always start with; 'This was the time when you couldn't hold her, this was the day she had a surgery, this was the time she couldn't breathe, or these were the weeks she couldn't eat... and on and on. And even though I can hold Bella and see physically how she has overcome all that she has... holding Waylon is healing me in ways I honestly never expected. It's hard to explain but I know its happening by God's grace. 

Bella: 1 week old 

Waylon: 1 week old

I'm paused here for a moment at my keyboard wanting to go on with all the details of Waylon's birth, how he was as a newborn, how he is now at 7 months... but I won't, I feel like I can't. It doesn't really matter. How much he weighs, what he likes, doesn't like...doesn't really matter. What matters most is he's here, he is happy and because of both my children, I know now what does matter in this world, helping those who have it worse. It's like in every moment that I want to share a picture of his smile, or what he's eating or his new milestone...I stop and think, some people out there don't get to have this joy and am I hurting them by sharing mine?  And I'm ok with this, I'm not upset that this is the way my mind seems to work these days. Most days I move past it quickly and others I seem to dwell on it. But I think God is trying to show me something in some way. And I think I may know a bit of why.  

Bella with Grandma Davis just before Bone Marrow Transplant

March 2015

I remember when Bella was at her worst in hospital, and seeing what she could not have, what we could not have, was what I saw with every turn of my head... unless I was inisde the walls of her hospital room. It was like a constant hurt deep in my heart when I would simply see another child eating (when mine could not), or a child playing with friends, when I needed to be masked, gowned and gloved to just touch mine. It was the type of pain that sunk your heart, physically taknig my breath away and forcing tears to intantly well up in my eyes. It was a pain that I would never wish on anyone else. Seeing so much taken away from my daughter, for such long periods of time. Everywhere I looked I was seeing what we could not have, and it hurt, a lot.  And I think now having gone through that, I'm constantly aware of that feeling and trying my hardest to make sure I am not that cause of pain for someone else with what I do or say.

 It seems quite frank but to be honest it's what crosses my mind every time I have a stressful medical issue with Bella or a typical new baby issue with Waylon.  And trust me, it's not that I haven't had those moments when the poop hits the fan all at once, oh trust me, we have. But regardless of my reaction my brain switches gears now, and tells me NOT to complain...even when I get asked how I am doing.  The moment I get frustrated with our rough patches, it makes me think of the medical moms who have lost their child, or the heartbroken couples who can't have kids.  In turn, it helps me handle our life easier when I stop and realize I can't complain because we have been through worse, others are going through worse.  I hope by sharing this it helps some of you out there, in someway.  We have had some rough nights and days with Bella's bowels, some really frustrating, scream-cry in the car moments... but my child is not on the wait list for an organ to save her life. She's not living in hospital right now. She's not dying! And so we'll still have our real bad weeks and I'll have my medical momma break-downs...but knowing what matters now snaps me back into dealing with the rough patches in a better way, brushing the baby barf off my shoulder and rememebring to try my hardest to not complain, not even a little bit. 

Bowel Motility Study in Columbus, Ohio, USA has been cancled. 

We have decided,through many hours of discussion with all of Bella's specilaists, not to go. 

Here's Why:

Bella's bowels, as we know are very rare and not even your "typical rare," if I can say that. She's had Hirschprungs disease (HD,dead gangleon cells) affect her whole colon in the rarest form that that disease entales (taking her whole colon) and possibly in ways they've never seen HD affect a small bowel. This is where they beleive it may have skipped up into her small bowel. She has poor bowel motility with complicated reasoning and with some scenarios, no reasoning at all. And we are going on 5 1/2 years of attempting to figure out her bowels through multiple Trial and Error treatments, resulting in no definate answers or help for prevention of issues. 

Basically the Motility Study will not give us an answer as to why her bowels are doing what they do and it will not give us a definate answer as to weather she'll have a successful reconection / ostomy take down. Which by the way is a major surgery we have to think about now, for Bella.

The Motility Study will not result in any of the WHYs we have been asking. This is what the #1 bowel specialist(Dr Di Lorenzo) in the world is telling us and that says a lot!  There are many 'perks' shall we say or advantages for the Ohio bowel specialist to accept Bella and bring her down for this study. (Remembering the study can not be done in Canada because the small cathetres needing to be used for Bella, due to her dwarfism, are not approved for use in Canada.) So after we have been granted aproval to go, he knows we can come, he has said that all the trouble of getting her down to Columbus for this study, is not worth it in her extrememly rare and complicated case. It is just not going to show us more than what we already know. 

Hearing that for the first time was very very hard to swallow. I had built up so so so much hope on this Motility Study giving us answers, and I had to let that go. It was hard, it took days and many more conversations with her Calgary doctors, who in part then had many more converstaions with Dr Di Lorenzo (Ohio bowel specialist). 

First, I needed to realize that I misunderstood what the Motility Study would actually entale and clearly understand why it would not give any answers or solutions. Once over that I needed to be able to also let go of the fact we will not get a chance at the best bowel team in the world physically getting a look at Bella, and hands on treatment from them for her. That was really hard, but what I learned next was the hardest part of all this...

"The next surgery is what will tell us the most and we have to just do it to know if it will work."

I'm not sure I have even fully processed this yet, but what I'm telling you is we have been told, from the best of the best, that there is not going to be any tests or minor procedures out there that are going to give us answers for Bella's bowels. The only way we are going to know if something will work for her, is to just do it. And that includes her next major surgery. 

I have built so much hate towards the process of Trial and Error. Those words make me cringe with anger. And now I must learn to accept them, and in doing so strengthen my faith like never before because now, rolling the dice on a major surgery may be our only option at understadning Bella's bowels and giving her better quality of life. But like I said, it's rolling the dice. As much as this surgery could be rich and could make everything 100x better for her and give us answers...it also has the potential of making everything way way worse, and taking so much away leaving her worse than before. That means her 18th surgery could actually lead to a 19th emergancy surgery and that would be worst case scenario. 

Let me back track a bit for clearer understanding of how we came to the decision of not going to Columbus but instead, planning when Bella's 6th major bowel surgery  will happen:

Bella's Calgary team is also learning a lot through this process and we are both learning what's best for Bella together. Because, like Calgary has told me, Bella is a pinoneer in this sort of bowel disease/function for what they have seen themselves in Calgary,Alberta. Dr Di in Ohio has seen way more similar cases, but niether have seen anything like what Bella's bowels are doing. So before you judge Calgary's team and say, " Well why did they suggest the Motility Study in the first place then?" It's because just like me they are desperate for answers too. Just like me, they want answers for fixing Bella's bowels. And so they put effort in to just that and seak support from the best of the best. So we are thankful for Dr Di explaining to us why it would be a large waste of time to send Bella all the way to Ohio for a test that won't show us more than we already know. And keep in mind Dr Di has speant countless hours on the phone, email, etc going over all of Bella's history and medical factors. Which we have to be reassured is the next best thing to physically seeing her. This world renowned specialist has taken hours and hours, and months to review Bella's case so he can confidently support our search in what will be best for Bella. 

1. The Motility Study will not show us Bella's entire bowel. At first I thought it did, but I was wrong. The cathetors would show us more of her bowel than any of her past scopes have, but not much more. So if anything is going on in the middle of her small bowel, say another random section of dead bowel...it wouldn't show us that. 2. The focus of the study is motility, hence the name Motility Study, so its focus is on how the bowel moves. We already know Bella's bowel doesn't function or move normally so the study would just confirm that. It would not tell us the why. 

So what procedure could tell us answers and give us a why...a surgery. Dr Di has said, "Nothing will be better than the surgical trial."  A planned, targeted approach type of surgery that they call Mapping. This is where surgically, they would go in and cut out full segment biopies of Bella's reamaining bowel. So this is different then scraping off the surface of her bowel type biopsy...this is cutting out a section of her intestine to put under the microscope and test. "Mapping" Bella's bowel means cutting out these full segment biopsies every so many centemeters, throughout all her remaining bowel. And what's crazy...that's not even the most intense part of this. Theres more.  Even though these full segment biopises would tell us a lot about Bella's bowels, nothing will tell us if taking away her ostomy and doing a reconnection will be successful. No tests will predict that working out. The only way to find out is to just do it. 

So presently we are weighing so so so many pros and cons of agreeing to put Bella through this type of surgery, and when would be the best time to do this surgical trial. 

Bella has gone through hell with how her bowels have functioned and we have speant years trying to understand what caused what, and why. Did we actually get all the affected bowel by taking out her whole colon? What damage was casued and what was already there at birth? Why have they stopped working causing blockages and then switch to severe dumping syndrome? When the best way to fix an issue with Bella's bowels is to force her on full or partial gut rest (aka; telling her she can't eat or only drink clear fluids)... you want answers! But when surgery is the only way to get those answers...thats scary. 

Its daunting. There is so much to consider. I can't barely explain, for starters, the guilt that is heavy on my chest just having to make this decision for my 5 year old daughter. Shes five! I don't get the option of her deciding whether or not to do this surgery. I don't get the opportunity to discuss the risks and benefits of this with her...thats all on me to give the go ahead. So if and when this surgery takes place, if the guilt is already hiting me now...can you imagine where I'll be at when the day comes?  Every one of Bellas previous 5 bowel surgeries were ALL emergancy surgeries. Not one was planned, not one was me asking for them to cut her open. So if this 6th bowel surgery has negative outcomes...God help me...please please help me. 

We will of course be taking a lot of time on deciding this. I'm only telling you what I presently know now. We have many more meetings and discussions to be had with Bella's GI team and surgeons. But all in all when we decide to do the Mapping Surgery, we need to be ready for it to also involve traialing a reconnection/ostomy take down. 

If we DON'T do the surgery:

- We continue on looking at life long need of TPN, Bella being hooked up to IVs nightly, needing the CVC in her chest. All of this comes with countless management needs, supplies, time and restrictions for Bella. 

- We look at a life with an ileostomy and everything that comes with that. The cost of supplies is overwhelming, the frustraing moments that come with living a life with an ostomy. But we need to remember the relief it brings as well. Her bowels are relaxed and able to function easier with the ostomy. 

If we GO AHEAD with the surgery:

- It would be her 18th surgery.

- We would gain  a much greater understanding, from the biopsies giving us better answers, as to how to manage her bowels.

- Being planned, the surgeon would get a clear, un-rushed, look at her bowels.

- A successful reconection would mean no more ileostomy. However she would need to re-learn how to stool on her own. 

- An unsuccessful reconection would mean another surgery(#19) for another ileostomy.

- All the risks of any surgery, and the toll it puts her tiny body through.

Clearly, this is a huge desicion, when this surgery should happen. As parents we will meticulously pick a part every angle, every pro and con to this desision as best we can. And we will of course have the support of her team of specialists there for us, guiding us through and having many more conversations with us. Here's the questions we have prep'd for Bella's GI team:

We welcome all prayer and support for the desision on this targeted surgery for Bella. We trust God will give us peace in knowing what is best for Bella, wether we go ahead with this surgery or not, or the timing of the surgery if we agree it should happen. Thank you all so much for your prayer and understanding in all this. I can't say enough, how much it means to me when people tell me they have read my blog post and understand. It's a huge weight off my shoulders knowing that others are there for us, praying for Bella, and understanding what this all means for her. Thank you.

The Love They Share

Bella has absolutely loved being a "big sister" to Waylon. Probably not too much longer here and we are going to have to start saying, "older sister." Bella is 5 years old and due to her rare dwarfism (Cartiliage Hair Hypoplasia) she is about the size of a 1 year old. 

I am in awe of their love for each other. I'm pretty sure Waylon's first word is going to be 'Bella.' He already has started proclaiming the \b\ sound quite well. Although that could also be him wanting to say the word bottle. ha ha He really loves that too. 

Bella has such a 'big sister heart' for her little brother. If he is crying, even for a small moment of time because he's waiting for the bottle, this is quite upsetting to Bella. She often tells me, " Mom, I really don't want Waylon to cry." And she will do everything she can to make him happy. Sometimes she'll even shed a few tears because he is crying, and they are very empathetic tears. Bella loves to help with so much of  Waylon needs, and he is in his glory when she's around. He looks for her in every room and the hugest smile comes across his face when he spots her. 

My typed words don't even do it justice, their relationship is lovely to watch. It heals my heart on a daily basis and I love taking it all in. My sweet warrior princess is becoming such an independent girl. I am beyond blessed to have her so willing to help, with so much empathy and a soul that cares so deeply.

What has school been like for Bella? 

In a nut shell, it has been awesome and she still asks to go on Saturdays! How great is that?! Bella is loving Kindergarten and yes, in April, she is still upset that school does not happen on the weekends. We are beyond blessed to see her in a school with such inspiring and smart staff memebers, teachers, EAs and nurse. Bella has become so independant in so many aspects of her life, including school, regardless of being the only one there who has a CVC, Gtube button and Ileostomy pouch! 

Funny Story as a Gut Kid

Having bowels that don't function normally means that sometimes you vomit and it is not because you have a stomach bug. It's simply because your bowels are sensetive and complicated and well, in Bella's world, she has learned how to not let it bring her down when shes doing something she loves! So one day, to her teachers suprise Bella says she feels like she may vomit. She runs over to the garbage can, throws up, cleans up, says, "I'm good!" and continues to play.  Any other typical kid would be in tears, embarassed, and probably nervously waiting somewhere out of site, for their mom or dad to come pick them up from school. Nope, not Bella! 

It is sort of bittersweet when you get to the point of them understanding their disease or medical issues so well that something so upsetting for most people, is peanuts to them. These complex medical kiddos are a different breed. They are strong in so many ways that still surprise us. 

I remember the first time Bella went to grab a large tupperware bowl, on her own, to puke in, and did so completely un-assisted. I stood there frozen and stunded not sure how I should feel in that moment...proud or horrified? 

But that just goes to show you how she is not going to let anything get her down. My girl has learned plenty of times that this world will throw as much at her as it can, and she's saying, "Not today Satan!" and batting his attempts away like she couldn't be bothered, I love it. I can't get enough of those moments where my jaw hits the floor, amazed at her resilience and I'm just happy she can walk through this life with so much confidence. I hope and pray that quality in her never fades. 

This is new:

 We are proud new owners of this fancy little ticket! And no! I don't use this for myself when I'm driving to the store by myself, not wanting to walk far in -40 weather...haters. I know better! 

No, this blue ticket is not to support my laziness, instead it belongs to Bella and supports her independance in our community. Bella's doctor approved our request for this parking tag. Being able to use these spots for Bella allows us to let her independently walk from the car to the store or building, we need to get to, without having to pick Bella up. Shorter distance allows her to carefully (and with our guidance) diligently watch for other vehicles, dangers, while she walks from our car to a building. The shorter the distance from the car, the less stress on her tiny body and she gets the independance she deserves. 

This leads me in to noting the new set of specialists Bella will be seeing at Albert Childrens when we go to Calgary next; Orthopaedics! These are the surgeons and specialists dedicated to the prevention, diagnosis and treatment of disorders of the bones, joints, ligaments, tendons and muscles. Bella has seen Ortho before for the unknown cause of restricted use/possible nerve damage in her right wrist and hand. But now with request from her Genetics doctor, she will see an Ortho specialist that will monitor all of her bones, and her growth as she gets older. This request from her geneticist stems from having her dwarfism condition: Cartilage Hair Hypoplasia. This condition can cause a whole host of bone issues as Bella grows, but hopefully in her case none of them will transpire. So we are super happy to have these new specialists help prevent any major bone issues as she grows. 

A typical moment with these two

Instagram

Follow me on Instagram! >>    kylact    << Medical Momma

I have been learning how to use Instagram as a smoother platform for sharing videos and tips in an easier, quicker way. Follow me and you can see many tips that I share in my Highlight stories. I also love sharing bits about the Medical Momma aspects of my life with Bella. I also love how IG has an easy to use feature for asking me questions, and then viewing my replies. I think what I enjoy most about Instagram over facebook is that a lot of my tips, info, videos, pictures and spontaneous heart felt moments I share, don't get lost way down in the feed. Instead they are more visible, easier to access and view. 

Stay tuned on my Instagram for a special Stealthbelt Promo code Bella will be able to share with all her ostimates! IF we are accpeted as their new Canadian ambassedor family, that means it will be easier and less costly for you and Bella to get a Stealthbelt! So much more info on this to come, so head on over to my IG page, follow me and watch for what exciting things I'm ready to share next! 

Bella when she receieved her brand new, very first Stealthbelt!

 I'll be sharing how these have more duerable key features, vs the homemade belts we have been using over the past 5 years. 

YouTube

Subscribe to my channel:  >>    Hospital Mom Hacks     <<

So recently I posted a video that I spontaniously recorded (hence my just out of bed look and housecoat attire) on Instragram, and also added it to my YouTube channel. Once discovering a mistake I had made, certain feelings and thoughts took over. As a mom of a medically complex child, I felt the need to share exactly what I was thinking in hopes that it may help another parent out there who has also made mistakes with caring for their child...oh wait.. isn't that EVERY parent? 

So please take a look, share if you'd like...my goal is to help smooth this 'parent path' for others, by sharing how I get over the pot holes and rough patches. 

Link: https://www.youtube.com/watch?v=2bGMIPz04YE&t=1s

... Because Every Picture Tells A Story

Bella and Daddy sending boats down our coulee river during Spring melt.

Bella handing out our Swift Tree Centre buisness cards during a tradeshow.  The guy in  booth next to us recognized her as some fierce competition!  So many people were drawn to her that they were walking away from his presentation!

Victory Family Church's children's church created this prayer wall for Bella! 

We cherish this love from our church family so much.

Our backyard

Cooking with my kiddlets

Bella loving on her newborn brother

October 2018

Bella's most recent hospital stay was back in December 2018 when she was treated for a high fever and possible cvc line infection. Thankfully it was not a line infection but most likely a viral bug she caught.

Waylon is now on month 7 of Super Hero Sidekick Training

October 2018

The whole Fam Jam at Bella's medical appointments with all her specialists at Alberta Childrens.

January 2019

So Much In 6 Months April - Sept 2018

Okay, let's dive right in here with whats gone on since June and where we are at today. In a nut shell it is like (with Bella's rare bowel issues/ileostomy) we have gone from only worrying, managing and thinking about Blockage Issues to the complete opposite type of problem, a constant dumping from her bowels of alarming volumes. So much has only revolved around Bella's super slow bowels for the past 4 1/2 years. And then boom, out of nowhere we are trying to handle the complete opposite type of problem; Dumping Syndrome. This is where Bella becomes dehydrated at an alarming rate, her ileostomy is dumping more fluid than she can drink in one day. We are talking losing over a litre a day. So usually her ostomy would put out roughly 200ml (of stool) in a day, that's normal for her size and weight. Now it's upwards of 1000mLs. We stress about anything less than 200mL because it could have meant some sort of functional blockage happening in her bowel.  Now, beginning of June, her bowels randomly decide to do the opposite and drain her tiny body of over a litre of fluids a day. She couldn't keep up. It's why she now has a CVC line (central venous catheter aka: sewn in permanent access to her blood vessel.) in her chest, home TPN (total parenteral nutrition) and we run IV fluids at home. 

Problem is, we still don't know why this dumping syndrome started and why it's still happening. 

After all her tests done in July at ACH, her GI specialists have a theory. Yep, you heard that right...a theory. So it has been extremely difficult to swallow the fact we have to continue managing, instead of preventing. Their best guess is that Bella may have caught some sort of viral infection in May that led to the severe dumping. Well.. this is tricky to believe because #1 She was never sick in May, and after I grilled many of the family and friends we were around, no one was sick either. #2 She never once has had fever in may or around any of her vomiting episodes since May...and there's been quite a few. And #3 The dumping episodes are still happening, and again, there has been no situation that we can think of where a viral infection has come into play...and it's now month 4 of all this. 

How are we dealing?

Well, this is our day to day: 

The past week is a good example but basically we wake up...and try to deal with and manage what Bella's bowels decide to do that day. It honestly has been that up and down. For the past two days I have been juggling Bella's outputs of 1000mLs, calling her doctors discussing how and when to bolus her with what IV fluids. The large dumping volumes come at any time, usually at 1am or 3 am in the morning...so no we arn't sleeping. And if I don't catch it in time, we are dealing with a huge mess and bath in the middle of the night. If it's not that, it's her IV pumps beeping or alarming because they need adjustment because they are very sensitive to any air in the lines that can happen when Bella rolls over in her sleep, clamps her line and the pump screams at me to wake up and fix it. That's usually our nights. Not to say I'm not used to this being up all night with Bella's ostomy issues/ medical life...but I was really hoping for a break by now. I mean it's been 5 years of this life now...or at least a small break before baby #2 comes, in about 2 weeks now. I'm trying to savour any bit of energy I can grasp before baby comes and Bella's medical needs are just not letting me. 

I gotta pause for a minute here for a much needed 'thank you.'

Thank You to the ladies who jam packed our deep freeze with ready to go freezer meals and treats for when we got home from hospital with Bella mid August.  You women are amazing friends and every day I can catch a break because you so generously gave of your time to make these meals for my family. I think of you everyday that I am utterly exhausted and then can feel some relief because of this amazing gift. Thank You. 

So back to the day to day...

 If we arn't up all night with osotmy explosions, leaks, pumps beeping, etc, then during the day we are managing Bella's stomach pain, bloat, distention,dumping and vomiting. The 3 days before our most recent dumping days, Bella was vomiting and her bowels were moving very slow. It's like they trap air inside and cause her distension and pain. This is where we have to make the call on making her go through Partial Gut rest. So that's when she's only allowed fluids. It sucks so much to have to go back and forth like this for her. It's horrible when shes having her soup and just crying because she had 2 crackers in her soup yesterday, why can't I today, she cries. And it's just heart breaking to see her fall apart over simple solid foods and this bouncing back and forth. I hate what it is doing to her and me. 

I mean she has had many days of NPO. So that's when shes not even allowed water. She was NPO the first 6 days in hospital for this recent stay. That's full gut rest. I can't even describe how hard it is to have to tell your child no you can't eat, you can't even drink, and you all have heard me talk about that before. So yes, managing with full or partial gut rest is still a part of Bella's life right now. I can't count any more, the amount of times it just brings me to tears when I have to eat and she can't. It's been horrible. I used to manage it better, but now that I'm pregnant it's been a horrible torture. I was a mess for my pregnancy gestational glucose test. I couldn't remember if I was supposed to fast before it or not. So I did and then waited to call and double check. I felt so faint  and angry from not being able to eat, and feeling that broke me because I knew this was exactly what Bella had been through SO MANY TIMES. When I was told I WAS allowed to have breakfast, I just started to cry. I think it took me a good half hour before I could even pour my cereal because I just couldn't stop crying knowing my daughter had been through that, over and over and ten times worse. 

~ Thank You Again ~

To all of you who supported Bella during this past hospital stay, thank you. So many of you showered her with soothing gifts that arrived with impeccable timing! I swear it was by the grace of God, the timing these gifts and Well Wishes letters had. Every single time Bella had a really hard procedure, x-ray, assessment, or poke for blood, there was a mail gift or letter waiting for her in her hospital room.  As a parent you want so badly to step in in-place of your child to take on the painful procedure for them  and with this medical life Bella has to live, I can't. So to see that grief leave her and the tears disappear because she receives something from someone showing they care so much for her, it helps me as a mom just as much as it helps Bella forget the pain she just endured.  Thank you all so so much. 

So much of this bowel management right now throws my mind into a frenzy. I constantly think about what Bella may have to miss out on because of how her bowels decide to act on any given day. What play date, or party will she miss because the bowel meds we are trailing this given week are not working this time. How many sleep-overs will she not get to be a part of because she's hooked up to IV for 12 hours over night. Constantly in the back of my mind I crumble at the thought of not knowing how long she'll need her ostomy, or TPN. And what about her bowels over all...if we still don't have them figured out after 5 years, if the most intelligent GI team of doctors still don't have answers for us... what will her future be? Will they ultimately fail and we dread a day where a full bowel transplant is what she needs? Or can we still hold out hope that they will function well consistently enough to reverse and take away her ileostomy?  These questions and thoughts rule my mind daily, hourly. And now I have to work harder than ever before to keep them from entering my mind so we can just enjoy life where we are at and in the moment. 

 Bella enjoying breakfast in bed while waiting for her IV pumps to finish infusion.

 A beautiful jean picnic blanket made for Bella from one of my friend's very talented mom. 

Bella's newest CVC Broviac line. It's tiny and short, so no Mr. Rigatoni... more like Little Miss Macaroni.

Restart

Everything you just read was a purge of what I wanted to say at the beginning of my post... so when I came back to edit and continue typing, everything below was actually how I started this post. 

I'm gonna cover a lot in this post because holy cow it's been six months! Remember when I used to write every week?  In this post I journal about a lot of Bella's medical downfalls and successes, but this will be a special post since I finally have time to also talk about baby Thomson #2, coming September 27th, 2018!  In these past months so so much has happened with Bella medically, and non-medically, but we've also been extremely busy outside of the most recent long term hospital stay for Bella. To put my writing, blogging, journeling on the back burner is not easy for me. This de-stress outlet is not only that, but it's a way for me to share details for all of those that support Bella, and that matters to me.  So I get a bit more stressed when I don't get "my time" to write. Who's with me on that?!

I'm also not a typical, uh...what should I call it, "Social Media Share'er" shall we say. I don't enjoy repeating the exact same post and photos on every form of my social media. (Instagram, Facebook, Bella's Facebook, Snapchat, Twitter, etc.) I prefer to use each for a different purpose as not to be so repetitive I guess.  Even though many of you follow Bella's Facebook Page, my journaling on my blog will still be quite a bit different as it will be more detailed and different photos. I like to keep Facebook for the "quick updates." I also wanted to mention that if any of you have SnapChat, that is a super day-to-day detailed look into our lives, as I often video a lot of the daily ups and downs Bella, Lyle and I face with her chronic medical conditions.  PM me if you'd like to follow me on SnapChat. :)

My YouTube Channel! Can't forget about my Hospital Mom Hacks channel. So of course I keep adding helpful videos that I hope supply other parents with tips and tricks to aid in supporting their medical child that may have similar challenges to face that Bella does. But recently I've also been adding our funny videos to my channel. Check em out! What I want to get across by adding these fun videos to my channel is to inspire any child going through tough hospital life, medical challenges or any difficulty... to keep the fun in your life present. Be fearless and be brave, it will help you get through.

August 3rd: Bella enjoyed a surprise visit from a few of Calgary's own Stampeders!

Recent Updates:

Nights Spent in Hospital now: 680

Most Recent Hospital Stay: June 6-8th in Swift Current & July 17th - Aug 8th 2018 in Alberta Children's Hospital.
Most recent surgery: July 20th = Bella's 17th Surgery
Bella still has her ileostomy pouch, her Gtube button and now a new CVC (central venous catheter) Broviac line in her chest, once again. This CVC is number 8 or 9....I've lost count now.
Bowels: Managing yet more unexpected, unexplained issues.
Immune System: Still have 100% virus fighting Tcells. Infection fighting Bcells are still low to zero but show promising progression in blood work. Bella has stopped weekly Subq pokes and is back on her monthly immune booster IVIG.

Okay, so here's what I've been saying lately... and I mean since she's got the cvc line and has been on TPN (Total Parenteral Nutrition: nutrients given to the body via IV through a vein...aka: Bella's cvc)... "Bella is at her best and has amazing energy."  We got our girl back! So overall things are really good right now but that doesn't mean that there isn't still so so much in the background that is extremely difficult to be dealing with right now. If there's ever been a time when you suspect someone is putting on a smile through there "I'm doing good" response...that's me, every time. There's so much going on in the background that I'm not telling you...there really is. But the truth of it all is that Bella being at her best is what matters most right now and so it makes all the hardships and challenges in the background, less daunting. And as I have always said, there is always someone who has it worse and so quite often I rather not go into details of the true, exhausting issues we deal with for Bella's medical needs because I have friends out there, other children and moms and dads I know, who for example, know that thier toddler will be on TPN life long, or that they are waiting for an entire bowel transplant to survive, or enduring a second Bone Marrow Transplant.

But I want to thank the friends and family that see through my fake smile, you know who you are. You get me, you know. And you continue to provide me with unconditional, caring, unfathomable love and kindness. You say all the things I need to hear at just the right moments in time that even sometimes take me by surprise. You truly heal my heart, daily. A hundred comments, situations, etc could happen to me in one day that break me down, and when you say the right things that a Medical Mom needs to hear, you brush it all away and help me get through. Thank you for thinking before you speak... that's a lost art to most these days.

A Six Month Summary

April - The Calm Before the Storm. This month Bella was doing very well. She was at a good weight, ostomy was operating well and she started PreSchool! 

May - A low key month. May was pretty uneventful. Bella had some successful blood work drawn in Calgary. Bella enjoyed Gymnastics, Swimming lessons, Preschool and Daycare. I carried on into my third month of substitute teaching! Yet, Bella's doctors think this was the month that Bella caught some sort of viral infection leading to the severe bowel dumping syndrome that caused her to dehydrate very quickly, loose weight and become very malnutritioned.  

June - The Storm Hits: You may remember my facebook post regarding the attempts to get bloodwork off Bella and then an emergency IV where they poked her 8 times in one hour. These incidents lead directly to a few of my major panic attacks and extreme high blood pressure episodes leaving me unable to drive or catch my breath. This month Bella was not herself, in much distress and could barely function most days. 

July- The Eye of the Storm: Much of Bella's agony drove me to get a consult with a Child Psych. We advocated for Bella's need for a cvc due to her being a difficult poke even before dehydration. Which by the way is usually a huge issue with kids that have ileostomies because you lose so much fluid through an ileostomy because you have no colon. By the time she was assessed at ACH, we also new not only would she need the cvc for bloodwork but TPN as well. Numerous tests, procedures, pokes and prods continued on Bella so that her specialists could understand what was going on and what she needed. Her Surgery happened July 20th.

August - The Home Stretch: We figured a lot out, and not so much at the same time. **sigh ** We came home August 8th with Bella sporting a new cvc line (I think her 8th or 9th...I've lost count) and we learned to convert our home into a hospital, once again.
September: How are we currently...not bad. Bella deals with daily ups and downs with her bowels.

Let's rewind a bit...

First day of PreK Aug. 30th 2018

Two of the many bruises left after 8 attempts (Two attempts on each limb) to get her emergency IV in while she was severely dehydrated. June 8th 2018. This photo is a lot of why Bella NEEDS a CVC Broviak (aka: line access in her chest) The 10 months that she was "line free" proved to be extremely traumatising for Bella due to the many failed attempts to get blood or IV even when she was not dehydrated! We believe mostly due to her Dwarfism/size her veins are just too short and crooked, and there's just a lack of ones to easily access. 

Weight loss comparison from before the ostomy dumping syndrome started, to after when it was in full force.  

Recovering with Daddy at Albert Children's Hospital

July 2018

Medical Play with the Childlife Team at ACH. Here Bella is doing a cvc dressing change on a dolly! This helped her through the fear and pain that can come with her own dressing changes and line care. quite often taking the bandage off hurts and the cleaning stings and when we flush the line it can taste funny and feel weird.  Bella must go through a dressing change once a week.

The Surgery and What it Told Us 

Bella had quite a bit done during her surgery on July 20th 2018. We knew the main thing going in that had to get done was giving Bella a new CVC Broviak line. Apart from that her GI doctor also prepared to do a scope of her upper small bowel to see if it could give us any clues as to why the Dumping Syndrome is happening. They also cleared up the painful granulation tissue around Bella's Gtube button and gave her a new one that was larger. That granulation tissue builds up to painful levels when the abdomen distends and shrinks too often. 

The Scope: 

They were able to get 50-60cm down from Bella's stomach through her upper small bowel. The motility study we are waiting on will map her entire small bowel. But for now, we hoped that 60cm down would give us some answers. It sort of did and mostly did not. The scope (Endoscopy) was a chance at looking for damage, a cause. The good part was they did not see a lot of damage at all! It's good for Bella's bowels, but not good because it doesn't help us prevent the issues her bowels are having. However it was very reassuring to see that the scope showed her bowel villi were of good length, and not blunted or shortened. There was minor inflammation, minor ulcers (three) and no sign of GVHD.  The lining of her bowel looked really good. The only part that gave some sort of clue as to what is going on is the fluid they aspirated from inside her bowel. That fluid showed there to be more bacteria in Bella's bowel than there should be normally. It showed some yeast bacteria that could be the SIBO (small intestine bacteria overgrowth). With this they generally treat with a cycle of antibiotics for 2 weeks on and 2 week breaks. We are currently doing this with Bella but we don't want her to have to rely on this cycle because it can also cause her system to become resistant to the meds and they stop working...which has actually already happened with 2 out of the 4 meds we have tried with Bella.

The ulcers were so minor that no treatment is even needed for them. You don't typically treat ulcers unless they cause blood loss and Bella's are not. I also forgot to mention the numerous stool samples and blood samples they took and tested that also came back with no clues as to what has caused this dumping syndrome and no clues as to a specific bad bacteria or virus. If the theory of a viral infection from May was true, the only way we could have known for sure was to take a stool sample then, and we didn't. 

I really don't like to think it was any sort of viral infection from May because if this is the recovery from that!?... 4 months of management with home IV fluids + no answers for prevention... then I think I would seriously consider us never leaving the house again! Cause like seriously, if we don't even know what it is, or how she caught it and it never even caused a fever yet it caused Bella to go through; surgery, plus 4+ months of continued treatment!??... seriously.

I prefer to keep with my theory (that her doctors also agree may be the case) that this is another curve ball from Bella's bowel Motility Issues. How her bowels actually move and function in their rare ways and their dismotility, is more of what I could agree with is going on here. 

The Psychological Trauma of Managing Bella's Bowels

Yah, that's a heavy title, but it's the best way to sum up what we live with day to day. My outlook now on our whole situation is a lot different, and for the better but let me share how we got there because for me, I've also had to go through the effects this whole medical life has had on my body, in worse ways than when Bella was even going through isolation and a bone marrow transplant.   When you look into my mind and try to understand why I am the way I am, think the way I think or respond the way I do, it's because my brain has been forced into re-mapping how I process everything, due to the extreme situations Bella's bowels have brought us. Things and situations that have happened over a year ago  can feel to me, like they just happened last month or last week. The stress from these scenarios are still THAT strong. Those feelings are not going away for me as quickly as I hoped. 

I have realised (and trust me, not in an easy way) that I need to look at all this in a different light. To continue killing myself by exhausting my efforts to prevent Bella's pain, or procedures is not working. Because of the miracle recoveries she HAS had, I can not expect a miracle recovery for every single bowel issue she has. Although I still do in Faith and hope, I needed to come to the realisation that we CAN manage. Management is key! Prevention attempts are killing me, exhausting me and after 4 1/2 years... not always working.  I need to keep my efforts in management skills when it comes to her bowels. I need to face the fact that we don't have all the answers, her specialists tell me they don't have all the answers. There is so much complexity, rare, "never seen before", never managed before, issues around Bella's bowels that we have to learn, I have to learn, to be okay with the management. 

Having said that, I'm so thankful for the talk therapy through my Mental Health nurse and the exceptional Specialists, doctors and surgeons Bella has looking after her. That right there is enough, it is a management system that I need to rely on when the bowel issues continue and the new ones come up. 

The Trauma in My Mind VS The Management

The Trauma: It's persistent re occurrence of relentless mind torture like none other. Who wouldn't want to prevent that?! I mean I try, but I need to remember the management is also doing as much prevention as possible, I can't ask for more except through prayer and faith.  But what my mind battles with, every time I say that is this:  The agonising wails from Bella when I had to hold her down for pokes and IV attempts. It was horrible, the way we paced in the hallway, I had to grip her in my arms like someone was about to steal her away from me. Both of us crying knowing it wasn't over yet. And then handing her off to the nurses and doctors, also in tears, knowing they had to attempt poking her again.  

The following morning I barely made it back to Bella's hospital room...well I didn't. I ended up in the ER first. Knowing that I shouldn't have been there for all those pokes, or that I should not have been through all that, while being 23 weeks pregnant... Lyle sent me to my mom's to sleep for the night as he stayed with Bella in the hospital. I woke up with the trauma still fresh in my mind and attempted to drive myself back to the hospital. With in a block of actually seeing the hospital I went into some sort of panic attack and instantly felt like I was going to pass out. I knew something was wrong and just tried to steer my car to the ER doors as best I could. The park job was horrible, I left my car open and cell phone on the front seat and stumbled into the ER doors. They called a nurse quickly and sat me down for assessment, took my blood pressure twice (It was stupid high, like 150 or 170/90). Then they gave me Ativan. I then recovered in the ER for a hour or so before I went upstairs to see Bella. 

These panic attacks have happened to me before and a few more came after. But they have all been within the last year or so. My body is forcing me to slow down when I can't mentally. 

 The Management: Bella's medical team knows that a cvc in her chest is a huge NEED for Bella's blood draws, emergency hydration and TPN.  This device is now our management and when it is time for the cvc Broviac to come out, there is a plan in place to replace it with an IVAD port. You can google the difference, but it will be another more long term management for Bella's blood work and unexpected IV fluid needs that would avoid having to poke her every limb. For me, I've been monitored quite closely with my doctors and have had no recent panic attacks or highblood pressures. 

Well... I guess during the recent hospital stay in July, I actually lost weight during pregnancy. Mostly because we were living in hospital again and that life wears you out! One day when it had been upwards of 20 people filing through Bella's hospital room and then she had procedures and appointments to make in different clinics in the hospital... I of course, while managing her on day 6 of being NPO (she was on full bowel rest, and not even allowed water to drink) I of course could never find the time to leave the room to eat myself, and on our way to her next appointment I had to stop myself before leaving the unit and ask her nurse to take her. I felt like I was going to faint. They rang into action of course throwing cookies and juice at me very quickly... all while I'm just seeing Bella's eyes widen, cause she knows she can't eat any of that. Thankfully her other nurse wheeled her away to her appointment so I could actually spend time re-hydrating myself and not causing a code 50 on the floor. (Code 50 is when an adult passes out in the Children's Hospital)

The Trauma: Watching her being put under sedation for surgeries and procedures. I went through this twice in July. Once for her surgery and once for her stitches removal from her cvc line. It was scary for her, hence why she wanted mommy there of course. But I feared what was coming. I've avoided this with her in the past because of how it goes and now that she's older I knew it would be worse. But I could not deny being there for her, and so I went, into the OR. As I hold her hand numerous medical staff muddle around prepping and Bella sees this, becoming more aware of whats going on, she cries out, "Noooo mommy." And through my tears I try to comfort her without showing my stress. But as they flush the sedation through her IV, she cries out again in fear as her eyes roll back and she becomes limp in my arms. Quite quickly the nurse escorts me out of the room and I wait for it to all be over and pray she comes out of it better. 

The Management: For this one, it's tricky. We know Bella has more surgeries and procedures coming up. And she'll want me in there again. But a lot of the talk therapy I have helps me work through these mental struggles. 

We managed to squeeze in some beach time before our summer was over!

While in hospital near end of July we managed to take a day trip to Canmore while Bella was off of her IV lines.

So What Ever Happened with the Motility Study?

Okay, so after handling the dumping syndrome, working out what meds would help Bella get through this, surgery, procedures, etc her doctors knew and we knew we would still have to hold off on this study. Also the new company making the specialised catheters for Bella's size, has not done that yet. And her GI specialist is the only doctor in Canada that does this particular motility study. He has one day per month allotted to this particular study.  It's quite difficult to set up especially when the specialised equipment he needs for Bella is not made yet. So after a large team meeting with her surgeons and doctors, we found out that this study would still need to be postponed and after what Bella had just been through, we all agreed her body needs a break anyway.  The main motive of this study is to dive deeper in to the details of how Bella's bowels opperate and why they do what they do that leaves us all so perplexed, all the time. It also will have the purpose of giving us more insight as to when and if we can take away her ileostomy. All of which we have time to wait on, it's really not a rush at this point while we just try to find a calm after the storm of this dumping syndrome. 

Child Psych Referral 

If we remember back to June/July I put a SOS call out because of the way Bella was acting and reacting was worrying me so so much. In the background, what we didn't realise at the time and it now weighs so heavily on me with the most "Mom Guilt" ever, is the fact that her body was actually starving at the time due to the dumping syndrome that we didn't understand yet. But after 4 years of being on high guard against blockage issues, and bowel issues in general we had to put food restrictions in place once again, until the problems were solved. Bella was drinking over 1L a day like a champ yet still requesting something to eat every 10 minutes... and I am not exaggerating there. And when we would have to say "no" and make her wait, the break downs were so so upsetting to watch. It was in no way "my Bella" and I knew I needed help and more support for her. 

Her body/bowels were failing her, and we had not found the right management yet. Her break downs were making me question how we would ever be able to have a family supper ever again, attend any birthday parties or outings where she would see people eating everything she could not. I would sub teach and barely be able to hold tears back watching all my students open their lunch kits. Her mind, and my mind were in dire need of help. 

We met with the Child Psych in Calgary during her hospital stay and we also have met with a Child Psych in Swift Current. Both gave me amazing and thorough advice, tips and instructions on how to help Bella cope with this. My main question going in was: Do I continue to just protect her sanity and keep her away from situations (like family suppers) because it could harm her mentally to live life, continually watching others eat and drink what she can not? OR Do I try, in my best way possible, to teach her to accept what she can't eat when she's forced on to partial or full gut rest due to her chronic bowel disorder?  I wanted to know what was best for her mind and her well being because I know we do not have an end in sight for this right now, this is a bowel disease we have to manage...how do we manage this when she is only 4 years old?

Here's what I learned: 

This is about SAFETY for Bella. Just like a child with a deadly nut allergy, Bella's food restrictions keep her safe. I need to remember that. So the answer is to teach her to accept and give her ways to cope and deal. And when Bella is well nutritioned, her body is supported with proper nutrition (like it currently is on TPN) teaching her acceptance comes so much easier. When Bella was not well, of course she couldn't deal, she was in crisis mode. Just to give you an idea of the difference. Back in June if I told her she couldn't have something she broke down in a sobbing manner, heartbreak and utter sadness. This was not tantrum style, this was like depression. Scary when you see depression in your 4 year old.  Now that Bella is well and at her best, if I explain to her why she can't have a particular food item or even explaining why her tummy needs more time in between snacks and meals, I have a content 4 year old responding with a calm, "Okay, mommy..I can wait."  How amazing is that!  Bella also can comment now on the "why" she can't have something, and she is showing me she is understanding the safety behind her food restrictions. It's a world of relief.  

There are still times when the breakdowns happen, but we can clearly see the difference now...it's not depression, it's more of a typical 4 year old response and not because her body is literately starving.  

We will persevere though, and continue to move these mountains. Bella is showing more and more of her intelligence on this whole matter and I know it will get easier as she gets older. 

Now that Bella has a cvc we have put the SubQ pokes (needles in her thighs) IVIG on hold, and now go back to our hospital once a month for a 3 hour IVIG (Immune Booster) infusion through her poke free cvc. 

Keeping her cvc protected is #1! This is how I have to saranwrap and cover Bella's cvc for every bath. It can not get wet. 

Grandma Davis and Bella at ACH, Calgary. My mom was an amazing support to me and my hubby during this recent hospital stay. 

Bella doing her own Beads of Courage! From birth I have been stringing her BOC's in order. This time Bella expressed her keen interest in her own beads and asked mommy if she could do it herself. It was hard to let go of my "story line" way of beading, but totally worth it to see the pride and joy on her face as she continued to bead in her own order and necklace wearing style.  From all her hospital stays, surgeries, and every single medical procedure...Bella now has over 3000 Beads of Courage. 

Immune System Update!

So Bella is still technically Immune Compromised since her Bcells have not fully come in yet and so are not functioning with her Tcells to make a fully working immune system like yours and mine. This means Bella has a fair shot at fighting viruses like a cold, but not infections or diseases like Mumps, Measles, etc. However her recent blood work still shows promising Bcell progression. We are going on year 4 post Bone Marrow Transplant and what her doctors have told me is kind of exciting. They have said that they are happily surprised, after this amount of time after transplant that her Bcell numbers are improving and showing signs of growth. So going from naive baby B cells to mature adult Bcells and growing in number. Her Immunologist was not expecting such improvement after so long, so it is exciting and helps us keep the faith that there is still a chance she could no longer require these monthly immune boosters. 

For now it still means that Bella depends and relies on Herd Immunity. So that's where you and I get vaccinations, immunisations, flu shots and do not purposefully spread disease. It also means I need to take a deep breath and trust in every public place Bella encounters...like school. I am very thankful to have such a cooperative community for Bella to grow up in. I am relieved that I have good communication with Bella's school about the communicable diseases that can occur there, and then we can take the necessary steps to keep Bella safe. For example, if we find out about a communicable disease that Bella may have been subject to, that allows us to pull her from school if we choose to, and also inform her Immunologist so that they can increase the dose of her IVIG. 

 Honestly, I can't believe how calm I am typing this right now. Over a year ago, prior to Bella attending daycare or school, the very thought of this situation terrified me. I contemplated home schooling Bella as well. But after all the hospital isolation she had endured, to keep her isolated even longer, socially, made me so so sad for her. The fear of issues arising was not worth sacrificing Bella's ability to meet friends, learn in a school environment and enjoy life outside of 4 sanitised walls. I'm so very thankful for the support we have for all of this, it means the world to me for my baby girl. 

Calgary Zoo August 2018

Bella was excited cause she saw a bird that looked like Hei Hei from the movie Moana. 

Bella started Kindergarten this week and she was so so so happy about it! I'm beyond excited to see the learning and love she'll get throughout this school year. It's going to be so great! Smart little December baby on our hands here. Bella turns 5 years old December 6th 2018. 

Baby Thomson #2 Due: October 3rd, 2018!

Baby Thomson #2 Coming Soon!

Bella is very happy to become a big sister and she is even more happier to be mommy's big helper. She's mostly excited to give baby a soother and bottle, and she has been practising with her baby dolls a lot. It's so sweet to watch her motherly actions come through. 

When I compare pregnancies there are a few differences. With Bella I was not sick at all, not even a little nausea. But with this baby, I was very sick for a good part of the first trimester. Baby is a lot bigger right now than Bella was, but I weigh less overall, so that's neat! Bella was born at 6lbs 11oz, and due to the fact my doc is doing extra checks with this baby, we know it's already at 6 lbs for sure, maybe more. Although I have been asked a lot...No, it is not twins. I wondered myself seeing as I'm all baby belly, like my tummy sticks out so far! But nope, just one in there. One big one that is. ha ha. I more often than not feel like a sad turtle who got flipped on it's back and can't get up, every time I try to get comfortable in bed. I have seriously contemplated installing those lovely stainless steel bars you see in every public bathroom, throughout my entire house. And numerous pulley-ropes attached to all areas of my ceiling above any chair would be great too. With this pregnancy and baby I am doing a Hand Written Journal. No Facebook page or blog for this little nugget. Gonna keep things a little more old fashioned with this one. 

We have about 2 weeks to go here before the planned C-section for baby. After many detailed discussions with my OBGYN we have agreed that a planned C-section will be the safest route.  I would prefer this anyway for a few reasons. My C-section with Bella was emergency but it went very well and I healed very nicely with no issues at all. Also, given Bella's amount of medical needs right now, it would be smarter for us to have a planned C-section instead of risk the unknown amount of hours/days I could be in labour for. With Bella my labour was 36 hours prior to C-section. It would be extremely difficult for my hubby to be torn in both directions, trying to be there for me through a long labour and also be the only one trained and able to carry out Bella's TPN/IV requirements, nightly. Let alone any possible bowel issues that could come up for Bella...it is smarter to go the planned C-section route for us. 

Not that I feel obligated to explain all this, I  just have had a lot of people ask and I don't mind sharing. C-section is scheduled for September 27th, Grandma Davis's birthday! She's pretty excited about that. Quite the birthday present for my mom.  I would love to ask that all of you keep us in your thoughts and prayers that day for a safe delivery. 

Without going in to a lot of detail, I don't mind sharing that although we have taken ALL the possible steps to making sure this baby is healthy (through PGD IVF {PreGenetic Diagnosis IVF} we have still been given a SCID screening blood test req from Bella's immunologist to make extra sure baby has a healthy immune system at birth. Saskatchewan still does not have new born SCID screening. The PGD screening of the embryo is 100% that baby will not be born with SCID, but we still want a triple check. 

From the day Bella's Geneticist informed us that our next child had a 1 in 4 chance of having the fatal disease, we knew we needed to take the PGD IVF route. This was the only way to make sure our next child was not born with the deadly disease. After 2 years in hospital from birth and understanding all of what Bella had to go through because she was born with SCID, the risks of losing her, the BMT, the pain and long term hospital stay...there was no way we could risk that happening to our next child, no way.  PGD IVF allowed us to test the embryos prior to transfer. To risk it naturally would have meant waiting until I was pregnant for at least 12 weeks, to test baby for SCID. And to think that if at that time we found out baby was affected, the rest of the pregnancy would be so extremely stressful anticipating a Bone Marrow Transplant for our second child that, that could possibly result in a miscarriage. There's also the fact of that risk forcing Bella back into hospital life for her sibling...so many nopes. 

We have had some fun discussions with our Geneticisit about cost scenarios around this as well. It's upsetting to know that the "risk route" is free but the safe route is thousands of dollars. I mean, Bella has literally cost our health care system millions. You would think that instead of risking that scenario with baby #2 that they would pay for our PGD IVF...oh to dream, if only. But as we discussed further with our Geneticist, she had noted, well...where would the list stop? How would the government even form that list and then where would it stop? All fatal diseases? certain ones? where would they draw the line? That list would be so extremely hard to make. All I can say is I'm happy that my hubby and I were able to start saving as soon as we knew the genetics side of things and we are so thankful for how supportive our family has been with understanding all of this. 

We have also prepared to save babies Cord Blood!  Why? Well, if by chance Bella's Bone Marrow Transplant ever fails (which I know many medical mommas who's little ones have had failed BMTs)  and this baby is a match for Bella, it would mean saving Bella's life!  There is always the option of asking Bella's original bone marrow donor...but there's risk of that not working out and then who knows how long we would wait to find another match. There is a cost to saving your babies cord blood, but with a referral from Bella's Immunologist, it comes at no cost for us! How wonderful is that. This opportunity is made possible through The Wings of Hope medical program through Canada's Inception Lifebank. 

Fishing with Grandpa Wagner

Okay well, things are about to get real busy here in a couple weeks. As much as I hope it doesn't take me another 6 months to write the next blog post, I might be sticking to quick little updates on Facebook while we adjust to life with a newborn. 

This will all be brand new for hubby and I...as this will hopefully be the first time we bring a newborn baby home from the hospital instead of having to live in one.