Friday the 13th

Decided to go to the Calgary Farmer's Market this afternoon, hadn't been yet since it re-opened after their move. So the girls and I headed down to check it out. We had a bite to eat when we got there, then Marissa played for a while in the play area. While Marissa was playing I hooked up Taylor's feed. She was sitting there in her wheelchair, and grabbed hold of her links a few times. Supergirl was using her hands, yay for Taylor. After Marissa was played out I took her over to the face painter to get done up. She wanted to be Tinkerbell, I wondered how the woman was going to pull that off, but in the end it looked great! Green, flowers, curly lines, and sparkles...or was it pixie dust? Of course it was!

See Taylor's hand holding onto the link?!!!

Sweet and Sparkly

After that we wondered through the market and I enjoyed the nice wide aisles, great for those of us pushing wheelchairs. We picked up a couple things, then decided to leave and head to a park with swings. Taylor's feed wasn't quite finished so I put the feeding back over my arm, undid the seatbelt on her wheelchair and lifted her out of it and into the carseat. Suddenly Taylor was screaming and I was mortified to discover that the tubing must have been caught somewhere on the chair and her g-tube was pulled out. Stomach contents and feed pouring out of the open hole in Taylor's tummy as she screamed her poor heart out. Insert extreme panic as I realize...

I. Don't. Have. The. Emergency. Kit. With. Me.

The one they explicitly told me to never leave home without. I left home without it. Trying to hold it together, but totally freaking out, I hurl the wheelchair into the back of the van and peel out of the parking lot. We're 15 minutes away from home. The way the stomach muscles are layered, the hole can close up very quickly, so I'm terrified, and speeding like a bat-outta-hell down Deerfoot. Marissa in the backseat going "weeeeee, this is fun". As we turn into Auburn Bay I tell her I'm going to need her help as soon as we get in the house. We run in and I wash the g-tube, deflate the balloon, and get a syringe ready with 5ml water to re-inflate it once it's back in. I throw it all in a cup and tell Marissa to take it upstairs and wait there for me while I get Taylor. I run back to the van, unbuckle her, run upstairs and put her on the floor. I wash up her stomach and it already looks like the hole is blocked. Marissa held her legs still and I was able to get the tube back in, but had to push it in with more force than I expected, Taylor screaming bloody murder again. As soon as it was done I immediately burst into tears. Marissa gave me the biggest tightest hug in the world. Then I checked placement to make sure that it indeed went straight down into her stomach and not through some gap into her abdomen. When I drew back on the syringe I got stomach contents...thank goodness. If I didn't we would have had to go to the hospital for a dye test to confirm placement.

Friday the 13th be gone...I don't need your drama!

Pulled the Plug

So, yesterday was the day, the plug was pulled! We headed in to Surgery Clinic for our follow up with Dr. Sigalet since Taylor's g-tube surgery on March 7th. He was very pleased with how the site looked, and said it's healed very nicely. Next step was literally to pull the plug, he had to remove the first-line g-tube and then replace it with a skin level device. I was somewhat torn about this appointment. I had been anxiously awaiting it as it would mean that there would no longer be a tube dangling out of Taylor's belly. But on the flip side, as the appointment got closer I started to dread it because of how bad it was going to be for Taylor when he pulled it out. Much to my surprise, the worst part was the freezing. He put the needle in 5 spots around the site on Taylor's belly and she was in serious distress. You know that awful hold-your-breath cry, followed by big screams and tears flowing. Poor little darling. Then he waited a minute for the freezing to kick in, counted to three, and pulled the tube out. Here's a picture of it (cleaned up), the rounded mushroom cap is the part that was inside, up against the wall of the stomach, and the oblong bolster is what was on the outside against her skin, with the tube dangling out. The mushroom cap is fairly soft plastic, but it still had to come out a hole the size of the tubing. Ouch.

As quickly as the tube was out, the measuring device was put in so that they could determine the size of MIC-KEY that Taylor needed (skin-level g-tube).

The next photo shows what the measuring device looks like. They put the tubing down the hole in Taylor's belly. Then, using one of the ports at the other end they inject water, and the end that is in Taylor's stomach fills up like a balloon. It is then pulled up so that the balloon is right up against her stomach wall, and on the outside, they push the white disk down until it is a dime's width away from her skin. The ruler markings on the tubing told them that the size she needed was 1.5cm.

Measuring device

I was able to get a quick photo of the hole in Taylor's belly when they pulled the measuring device out. It's not pretty, that's for sure, but it's not as stomach churning as I expected it to be.

The MIC-KEY g-tube is also a balloon device. So in it went, and water was injected in the special port to fill the balloon right away and secure the tube.

They cleaned her up and put some gauze around the site to soak up any more blood that may seep over the next 24 hours. Here it is, Taylor's new button...

Teaching wasn't too complicated. Only change to the way we hook up her feeds is the addition of a connector that locks onto the button, and the feeding bag hooks into the new connector. We were also taught how to vent if Taylor's got a lot of gas in her belly, there's a separate connector for that, then you just attach an empty 60cc syringe and let the gas bubbles out.

Once a week we have to clean the button of any formula buildup. We inject 1ml of club soda every minute for 10 minutes, and the bubbles do the work. Pretty simple.

Once a week we also need to check the balloon. We put an empty syringe on the balloon port and draw the water out of the balloon, keeping one hand firmly on the button so that it doesn't come out! Then we take a second syringe with 5ml water in it, attach it to the balloon port and inject the water to refill the balloon. The reason for this is that the balloons do fail over time, and if we notice that we aren't getting the 5ml out of the balloon anymore, it's likely time to replace the button.

And next time we do it ourselves. Yes, we will remove the button, see the open hole into her stomach, put in a new one and inflate the balloon. These MIC-KEY devices generally last about 8 months, so it's not like we have to change it very regularly. Good grief, yet another thing that is shocking to think we have to do ourselves. But we will...because we're capable. Who would have thought?! Oh the things we have learned!

Teaching, tube change, and all...we were in and out of Surgery Clinic within an hour. Nice and quick. We got home and in no time Taylor rolled onto her tummy. Wow. This girl continues to amaze me. Tube-just-pulled-out-blood-everywhere-screaming-in-pain and she's already comfortable enough to be on her tummy. Supergirl indeed. Mommy's so proud.

Sprunshine!

That's right...sprunshine...the perfect blend of spring finally appearing and warm rays of sunshine pouring down! Gotta love it! Patio furniture on deck, flowers bought and ready to plant, hoses out, lawn raked, trees budding, flip flops on, sprinkler ready to be run through, and BBQ back in business.

Pinwheel held up to the sky with one hand, camera in the other...I just LOVE these two shots!

Marissa loves her time in the tub. I walked by the bathroom as the tub was filling up and saw her leaning in to take a drink so I grabbed the camera and caught the next sip...

We hung out in the backyard together on Sunday afternoon. Perfect family afternoon. Beautiful sunshine. Dog outside where nobody had to worry if she was going to squat on the floor. Daddy raking. Marissa gardening. Taylor feeding in her highchair. Me clicking pictures. Oh yes, mustn't forget...baby suntanning...

Our first week with Koko has been fun. Working hard to get her into a routine. She's a lively little one...that is when she's not being carted around by Marissa who is absolutely smitten. She can zip around the yard like a little firecracker. I think she's going to be very trainable, she catches on really quickly. Responded to her name in no time. Housebreaking however is challenging for Koko's breed. So having an adorable 3 pound puppy comes with the not-so-adorable little piddles and poops around the house. Luckily a 3 pound dog leaves just little messes to deal with. So training will be quite the project around here for the next while. Wish us luck. Koko is definitely Marissa's dog...but her and Taylor managed to sneak in a nap curled up together, so sweet.

They looked so sweet all curled up together!

Marissa put Koko in the play train and turned it on so that she could go for a ride...oh did we laugh!!

My favourite shot of little Miss Koko resting outside in the sunshine

Taylor's doing well. As of today, she's drinking one and a half bottles a day by mouth! Supergirl is sure making huge strides with her feeding. We have to thicken the fluid she drinks orally to minimize her aspiration risks, and the thickener has been a bit hard on her little system. Things sort of stopped moving if ya know what I mean. But she had a good poop today and hopefully she's adjusting to it.

She's finally managing to stay on her tummy a bit now that the g-tube site has healed up. Tomorrow might change that, but hopefully not for too long. We're off to the surgeon's office to have the first line g-tube device taken out (NOT looking forward to that - they literally have to pull the plug out of the little hole), and then having her skin level device put in. It will sure be nice to not have a tube hanging out. I'm sure once the tenderness of tomorrow's trauma passes, it will be much more comfortable for her to get back to some productive tummy time.

Good Things, Grand Finale

It's been a week chock full of good stuff...

Taylor's been doing really well drinking 60mL out of a bottle once a day. Last Monday we got adventurous, we doubled it! And whadya know...Supergirl downed it...all 120mL!!!!!!!! Shar was feeding her, I was there, and JoAnn from Pace was over for a home visit. Three witnesses all cheering like crazy with excitement. When Shar took the bottle out of her mouth, Taylor had a bit of a smirk on her face, kinda like she was sayin' "Ha! And you didn't think I could do it!" We were all cheering and praising her like crazy in high-pitched squealy voices and suddenly she busted out this gigantic full mouth smile! It was amazing. Like she was as proud of herself as we were. Absolutely precious. It was so fast I couldn't catch it with the camera, but it's etched in my mind, that's for sure.

The girls' cousin Jeff was over the other day playing with Marissa, they had her barbies lined up on blocks on the floor in the playroom. They were doing push-ups at the gym! Of course they were, what else do Barbies do?! Marissa loves it when Jeff comes over, he loves it too, they're special friends those two.

Apparently there's group of church ladies who make quilts for the Rotary Flames House. On our last visit they sent us home with one for Taylor. It has a patch on the corner, stitched by the lovely lady from Rotary South who made it. Wherever you are Doreen, we thank you!

It's really hard to find footed sleepers in toddler sizes, they're so much better on Taylor than the two-piece separates. I do have a bunch, but they all have zippers, and that poses a bit of a problem when it comes to the g-tube. When she's hooked up to a feed I have to have the sleeper halfway unzipped. So I thought I'd take them to an alteration place and have a button hole put in each one to create an access hole to the g-tube. Great idea right? Well, I took them in and they were going to charge $11 per sleeper. You've got to be kidding me, that's more than the price of the sleepers. So I brought them home, where they have been sitting on the railing ever since. Francis' parents were here for a visit last week and I was telling my mother-in-law the story. She told me I could do those by hand in no time. I'm like, yeah right! I'll just add that to the mile-long list of things in my procrastination pile! Grada insisted it was easy, asked me for a needle and thread and a scrap of fabric, and proceeded to showed me how to hand sew a buttonhole stitch. I think Francis was smirking under his breath 'cause he knew the likelihood of me following through was pretty slim! So I decided to buck up and off I went to the store, got me some embroidery thread and needles. On Thursday night I sat down in my comfy chair, cut a slit in each of the sleepers and started stitching. And I am proud to say I did it, and if I do say so myself, they look pretty damn good! Thank you Grada...Francis thanks you too 'cause you saved him $66!

My six masterpieces!

I had respite one afternoon, so off I went to tackle some errands and enjoy some alone time. Along my way I ended up at the Children's Place in the CrossIron Mills outlet mall. And I struck gold. Marissa is just about out of all of her shoes...the 10's are getting pretty tight, nearly ready for 11's. I got her four pairs of shoes for under $30! Followed by three pairs of sparkly flip-flops at Superstore for $12. Seriously...7 pairs of shoes for forty-two bucks?? Wish I could get myself 7 pairs of shoes for $42, chance of that happening is not bloody likely!

We got a Dakota chair for Taylor (like the ones at Rotary Flames House). It's a thing of beauty, and the ultimate in comfort and safety. It's a supportive bean bag chair, with a safety harness, made in Calgary to boot! It can be pushed right back allowing her to chill out and/or sleep all cradled in, or it can be brought all the way forward so that she is supported in an upright position. Or any angle in between, all without any pressure points. It's so nice to have another seating option in the house to get Taylor up off the floor.

Of course Marissa and I got to do some egg colouring as Easter was approaching. She coloured the eggs first with the magic crayon, dropped them into mugs of pretty coloured dye, then fetched them out once they reached the perfect shade. I drew some swirls on one of the eggs with the magic crayon and when Marissa scooped it out of the mug she complimented me on how beautiful my egg was. Why thank you dear!

You're never too old to do this!

Easter weekend was a busy one. We had respite on Friday night, so after a full day with the girls, Francis and I went out to see a movie...Limitless. It was good. Saturday morning Marissa had gymnastics, then it was off to her friend Sam's birthday party, and finally back home to make a nice supper. Mom joined us and showed up with arms full. A basket of sweets for Marissa, flowers for me, and an absolutely darling swarovski necklace that she made for Taylor (to match last year's bracelet)! Thank you so much Mom, you're too good to us. Before bed that night Francis and I were busy doing up the girls' Easter baskets and laid out the trail of carrot clues that Marissa would follow the next morning. Sunday morning was really fun, I loved watching Marissa's animated reaction to each clue that lead her closer and closer to the big basket waiting for her at the end of the hunt. And she was just as anxious to open Taylor's basket and show her each little treasure that was inside. We didn't do chocolate since Taylor can't have any and Marissa doesn't need any, instead opted for an array of little things they would each enjoy. Following the Easter bunny excitement, we left on an exciting errand (that you'll read about next), then we were off to dinner at Grandma & Grandpa's. Marny has made her signature rainboots for all the grandkids, and to my delight yesterday Taylor got her very own pair! She may not be able to puddle jump in them, but she'll sure rock the look while being pushed through the rain in her wheelchair, thank you Marny! Marissa always enjoys time with her cousins Megan & Jilli, the threesome were busy little girls whipping up no shortage of Easter crafts last night.

And now...for the grand finale...drumroll please...

We. Got. A. Puppy. She's the most adorable little Maltese/Yorkie cross ("Morkie") you have ever seen! Allow me introduce you to Koko...

You may or may not know that we used to have a dog. A beautiful yellow lab named Bailey. Bailey was a bundle of extreme energy and at a certain point in time we just couldn't seem to keep up with what he needed from us in time and intense exercise. As a result, he started to become destructive and very sad. We felt the best and kindest thing for Bailey would be to find him a new home where he could get what he needed. We did find him a great one, we met the lovely couple who lived directly across the street from an open field where they would be running him several times a day. We did go over a few months afterwards to visit and could see that we made the right choice for him. Every time I see a yellow lab though, I still feel a twinge of guilt for the commitment we failed to keep. We loved him so very much, and made sure he went to a good home, but at the end of the day...we did let him down.

We were certainly in no hurry for another pet after we let Bailey go. It's been a few years now. And this was not a decision we made lightly. I think we both knew there would eventually be a dog in our future, we just didn't know when that would be. We have talked about what the right circumstances would have to be in order for us to get a dog, because it is a commitment that we are absolutely 100% dedicated to honoring second time around. The dog would have to be small and not require alot of exercise. It would have to be non-shedding because of my allergies. It would have to be playful and non-aggressive. While we weren't actively looking for a dog, we knew very clearly what we wanted in one. So when the right dog happened to come along, we made the decision. She is a small dog indeed, will be only 6 or 7 pounds full grown! She's a very low shedding dog, frequently chosen by allergy sufferers. And she's playful indeed. We spent a good chunk of time in the bonding room with her on Friday. Marissa was totally taken with her, had her up and down over and over, gave her tonnes of little cuddles and squeezes, played with her...and she took it all in stride. No sign at all of even a hint of aggression. She could handle Marissa, no small feat! All our requirements were met, Taylor was okay with her, I was not a stuffed-up mess, and we were unanimously taken with her. So Easter Sunday found us back at the pet store picking up our sweet little Koko! I think this is going to make a really positive impact on Marissa too, she'll have a real loyal playmate in Koko.

Well that's the end of one big post! I'll wrap this up with an 'outtake' cause it's too silly not to include :-)

Burnt

Houston, we have a problem. Two words...granulation tissue. What is that you ask?? Well it's one of four types of skin issues that can arise when you have a g-tube. It just so happens to be the grossest one. It is very common and treatable. It grows directly around the gastrostomy hole and looks raised, red and may ooze fluid or bleed easily. It basically looks like stomach is coming out of the hole. Granulation tissue should be treated when it first appears. It first showed up last week, so off we went to see the Home Nutrition nurse at Children's for our teaching session on how to treat it at home. It's not nice...you pretty much burn it off using silver nitrate sticks. First you paint the healthy skin all around the g-tube with vaseline to protect it. Then you use what looks like a long match stick (silver nitrate) and touch the tip of it to the granulation tissue. This causes a chemical reaction, the tissue turns grey right away (as it starts to burn), and eventually becomes black. The treatment can be repeated every 3 days until the treated tissue dries up and falls off. Treatment is complete when this occurs.

Treatment supplies

Granulation tissue - before treatment

Granulation tissue - grey in colour immediately after treatment

Taylor's first treatment was last Wednesday by the Home Nutrition nurse, it dried up and fell off the next day. Unfortunately it's back, and we had to treat it today. I hope this isn't going to be a regular thing. It's quite awful to have Taylor screaming in pain and know that you're the one inflicting it.

While we're on the g-tube topic...

We asked Marissa what she'd think about having a doll with a g-tube that she could feed just like Taylor does (I saw this idea on a tube feeding website). She was crazy excited about this idea and surgery couldn't take place fast enough! Marissa selected which doll she wanted to have surgery, geared up in her hospital scrubs, put on a mask and with assistance from Daddy and his power drill, surgery was a success! We didn't have a spare g-tube to use, but we managed to get our hands on a foley catheter. Don't ask how...we are sworn to secrecy. It is a balloon device much like the g-tube. After the hole was drilled, Marissa inserted the tube and used a syringe with 10mL of water to inflate the balloon so that it can't be pulled out. Dr. Dengis was very thorough...she scrubbed in, wore a mask, made sure the environment was sterile, checked the baby's blood pressure and heart rate, and had the very best bedside manner once surgery was complete and baby was in recovery. What a riot! Anyways, Marissa is beside herself with her special new doll, and has affectionately named her Taylor. She's proudly showing 'Taylor' off to everyone, including her friends at preschool this morning!

Enjoyed coffee with my friend Carol on Friday morning while the little ones played. Marissa and Liam managed to escape being captured by the camera. Taylor, Annika and Emmett, however, couldn't hide from the paparazzi. Emmett is nine months now and commando crawls across the room faster than a speeding bullet! He's the happiest little guy and so darn cute. Taylor and Annika kept very close together on the floor as they always do, little kindred spirits they are...

Well, that's a wrap, night all!

Catch Up!

Wow, it's sure been busy since we got home from Taylor's surgery! Finally coming up for air and time to do some catch up on the blog...

So...we got home from the hospital on the 9th and were booked for our first stay at Rotary Flames House on the 11th. All four of us stayed as a family for the weekend, it was wonderful! I can't say enough about it. And I was so very grateful to have nurses and doctors looking after Taylor all weekend so soon after her surgery. The g-tube site had me pretty intimidated so it was perfect timing to have that support to get us feeling more comfortable with everything. She was in the best of hands there, everyone was so lovely. All of Taylor's needs were taken care of by the team, so all we had to do was cuddle and enjoy her...and run after her older sister! Marissa was like a princess in a castle. Such a big place to explore, and explore she did! We chased after her all weekend. We met a lovely family who was also on their first stay at the House. Their special little girl had a sibling named Sam and Marissa attached herself to him for the whole weekend...it was all about Sam!! It was nice that she had a playmate for the weekend, but we were sure exhausted running after her constantly. Her listening ears were not functioning for some reason, so there were some challenging moments!

Taylor loves to swing, so she enjoyed lots of that over the weekend! Wonderful mats for floor time. And the most amazing chair, called the Dakota chair. We're looking into getting one for home, they're actually made in Calgary. It's like a beanbag chair but much more supportive, you can sit it upright like an actual chair, or push it right back so that it cradles Taylor giving her great support with no pressure points.

In the Dakota chair

Sooooo relaxing

This swing is amazing

More swing time

Another Dakota chair

My angel

Taylor's neck arching, head twisting, back crawl!

Marissa did some swinging too, had craft time, playroom time, playdough making with the other siblings, but mostly Sam time! Grandma & Grandpa joined us for dinner the first night and we gave them a little tour of the House. They brought Marissa a special book about feelings, and she enjoyed storytime with Grandma.

Storytime silly faces with Grandma

Marissa & her new buddy Sam

Making playdough in the Rumpus Room

Spinning after we twisted her up and let go, she loved it!

Our family suite was so nice. Three rooms connected together. I think my favourite part of the weekend was being called for mealtime. The nursing station would get a call and suddenly we'd hear..."supper is ready". And I didn't have to make it or clean up, just had to show up for meals and eat! I could get used to that! And the kitchen was lovely, a chef's dream!

View of Children's Hospital from our room

Amazing kitchen

Dining room

We got home Sunday afternoon, then went full swing into getting ready for Marissa's birthday! She turned 5 on Wednesday, don't know where time goes! We did a St. Patrick's theme for her birthday since they're just a day apart. It was full on green here! Even made a green supper. Lots of fun. She's going to have a party with her friends next weekend, it was just the four of us at home celebrating her very special birthday this week.

Party hat made by Mommy

Green ravioli, green cream sauce, green peas, and green punch!

Wednesday was Taylor's second IVIG treatment, and the first time her IVAD was used. So much better than torturing her to put an IV in, which usually requires several attempts and lots of tears. What they did was put some ametop cream on her skin over the IVAD site, left that on for half an hour to numb the skin. Then they put the needle through into the IVAD and she didn't feel a thing, it was perfect! It ran for a few hours, then we stayed another half an hour for monitoring to make sure she didn't have a reaction. I'm definitely a fan of this procedure vs the IV trauma. Dr. Bello thinks it will take two or three IVIG treatments before we know if it's effective in reducing Taylor's seizures. I'm going to be keeping more of an eye on them over the next few weeks, I think I'm noticing them reduce already, so my fingers and toes are crossed that this is going to help.

Taylor's been really uncomfortable since the surgery, very sensitive and sore around the g-tube. Screaming her little heart every day when we clean around it and turn it. One of the Home Nutrition nurses came to take a look while we were in for the IVIG treatment. She said it was in too tight and that was probably why Taylor was in such discomfort. She loosened it a bit and it has made the world of difference. She doesn't even cry now when we clean and turn it. Taylor has only rolled over onto her tummy once since the surgery and immediately screamed...too soon! Too tender. She hasn't attempted rolling onto her tummy since, I think she remembers the pain. Just needs a bit more time, maybe this week. The new pump works like a dream, and feeding is a breeze. Feeding on the go was a huge ordeal before, but now it's super easy. SO grateful that we got that magical little pump, and the wee backpack that it goes in with the feeding bag to make things so simple. She's been taking 60mL by mouth really well this past week. Her little teaspoon size 'tastes' of carrots and butter still takes her a long time to get through but we keep trying. I can't even describe how wonderful it is to not have the NG tube any more. Taylor's already coming around I think, she's letting us touch her face a bit more without getting upset. I even wiped her face the other day without near the drama that it used to be. My girl is coming back!

That's about it for this post, I think we're caught up! I'll sign off with this cute pic of Marissa. Ever since her friend Sophie got glasses, she wants them too. She came into the playroom the other day wearing a pair of mine and looked so darn cute. I wouldn't mind a bit if she needed glasses, she looks so studious and grown up...