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.