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.
... 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
