We are back from our epic adventure and I am entries behind on my blog! It was all worth it… we traveled (in our OWN van SAFELY), visited (with kids, adults AND kitties), celebrated a special birthday (Trinity’s) and enjoyed MY belated birthday present (Comic Con!)… oh and so much more…

But first of course is the drive to Echo’s follow up appointment one month after her surgery (her SUCCESSFUL surgery). We got up rather early, packed our NEW van up and headed out SUCCESSFULLY… we even went over 80km an hour! We are no longer a bad reverse version of the movie Speed! YAY! We had to drive with our temporary travel sticker as we were heading right to register permanently and get our new licence plate AFTER her 9:45 appointment. 

We made rather good time and parked in the parkade this time to save on walking. Then it was right in to the cardiology clinic to sit and wait. Ken actually took the big kids to the toy area right outside the clinic and I did all the tests with Echo. They were mostly worried about doing her Echo-cardiograph and did that first. She was NOT impressed but they were able to show me the device with the heart beating around it. Nothing moving where it shouldn’t, it was rather amazing! 

They weighed and measured her as well and it turns out she has gained almost a POUND since surgery. So good for her! And we were able to get her EKG done too… though blood pressure never really came out right. Then there was just the wait to see the cardiologist who was VERY happy with her progress and glad to see all of the kids together. We had also brought in our thank you card which made its rounds and was VERY well received! 

Waiting for the cardiologist... note the obvious boredom!

Of course Echo wanted to walk out of the hospital and tripped and fell face first in front of some nurses and the kids were bored out of their minds but we were ok! I am so glad we do not have to go back for 5 months! 

Pre trip and fall but cute group!

After hospital it was time for a wee bit of shopping – and lunch… well both stores were in the same place so first we went to Education Station to redeem Trinity’s birthday 10.00 gift certificate. She also had birthday money to spend from Nana and Baba so there was some excitement to be had! She decided on a jewelry box you decorate yourself with jewels. A great choice as she keeps getting tiny pretties to save and has no good place to put them.

And then, of course… lunch at “the Meatball Store” AKA IKEA for those less in the know! We had to get our fill of meatballs while the kids watched some of Mulan on their tv in the kids’ area. VERY delicious AND affordable! One of the things we miss from moving out of the city. Then Trinity and I wandered the toy section to spend the last of her birthday money. She managed to get a dolly, dolly clothes and a cute soft bathtub set. 

NOMS

With the shopping and eating and hospital stuff done it was time to head out to our next destination – the registration office, then Grandma’s work and then to Sharon and Darryl’s for our two night stay to visit with them and their 3 kids Emma, Ethan and Logan. They are back home from California and the kids are all around our kids’ ages. So it works PERFECTLY… oh and Echo LOVES Sharon. 

We continued on the hour south east and went right to the registry. With minimum fuss (Ken had to come back out to get cash since he couldn’t use his card there) we had our licence plate and then it was just a matter of stopping in to see Grandma and borrowing her washroom… and a screwdriver! And then we were official… New Used Van is ours! What a success!

The rest of the evening it was time to catch up with the Bleau family. The kids were in toy and friend heaven… we had play time, some yummy dinner and then ADULT time! Ken and Darryl did some gaming and Sharon and I hung out while she made a cake just to celebrate Trinity’s birthday! It was a lovely and RELAXING evening. The kids had a bedroom to sleep in – two large bunkbeds and a pull out bed that we didn’t use. 

Snuggling with dolly on the comfy couch

It made me VERY tempted to start trying to convince Ken that we needed to move back to town… almost. The small town feel and the ability to still do most everything combined makes it so comforting. Ken just rolled his eyes at me. 

So that is the Wednesday… onto our second day in town and the relaxation that followed in the NEXT blog entry. After all, we stayed in ONE PLACE with toys, kids and friends for a whole day! Gotta share that right… and who’s birthday did we celebrate? Can you hear Trinity yell TRINITY???

100% healthy!

Friday marked the end of our hospital saga. I lucked out and our nurse took Echo out to snuggle around 5am instead of waking me (did I ever need sleep) and from then on she started to perk up more and more. She could not stand or walk of course with the iv in her foot but sometime the night before they closed off her iv so that it was not connected to fluids and medications giving us more freedom to hold and snuggle her as well as in the morning removed her from the monitors. The left the stickers and such on as they were needed for the Echocardiogram we had to have before leaving the hospital.

Ken and I had agreed to meeting up back at Echo’s room at 7am Friday morning, I didn’t wake up until 7:30 and Ken required me using the phone in the shared area of our ward that allowed local calls! His timing was rather amazing, he came in right behind the nurse who was there to take us to our x-ray. The first stage of us going home. 

I hate the xrays… Ken and I both were quick to go behind the shield and not look. It is hard to deal with! But the techs are compassionate and they even gave us the option NOT to go with… but in for a penny in for a pound! She got to ride down there in a stroller and everything. 

Ready to x-ray

Then it was back to hurry up and wait… well breakfast for our Echo. The night before the nurse had helped me give her a sponge bath for her head, neck and face so she was at least a little fresh. I had to go back to the kitchenette to fill out her meal as she didn’t like most of what was there but it was a good meal. She had finally started drinking again too… they were a little concerned about that. She didn’t drink much at all the day/night before, but with all the iv fluids she just wasn’t feeling it. 

We had time to sit up a bit… no crawling of course and to start fussing… and wait wait wait for those last two steps – the echocardiogram and the meeting with the surgeon. 

I had time for a shower in the room… time to bring out blocks from the toy room for Echo to keep busy… time to enjoy our littlest angel becoming more herself again! 

Blocks

Then it was rush off to the echo-cardiogram where Echo AND Daddy fell asleep with Baby Einstein playing. The doctor had to see the results so the tech sneaked out and let Echo sleep. She had a really hard time napping in the hospital, she was either too busy people watching out her door of her room or checking to ensure that myself or Ken did not leave her bedside.

At that point it was time to wait for the surgeon. Once we chatted with him, went over the post op instructions AGAIN and were made aware that we had to come back in a month for a follow up all that was left was the nurse coming to remove the last of Echo’s hook ups, check us out and see us off.

Taking the iv out was a bit traumatic. The nurses in surgery really taped it on, but she was so excited to be free! Then there was the chest stickers (those didn’t hurt, and I saved them) and then FINALLY clothing!! Ken went to get the vehicle and between the nurse and myself we packed us up and readied Echo to go home. The nurses were able to give me the left over bottle of the antibiotics so we don’t need to purchase the prescription which is great as we don’t have coverage for that right now. She gave me the nurse’s instructions and the doctor’s write up. The nurse’s version is MUCH easier to read! Basically we walked through what to look for with her incisions (swelling, bleeding, etc etc) and a reminder as to how to deal with the aspirin (once a day, crush and add to small amounts of yogurt etc if needed)… she also gave me enough syringes that I don’t have to worry about how many doses, just run out of syringes on the antibiotic!

I stopped off at the cardiology office to check on the scheduling of our 1 month follow up. They are to call us with a date. And we were off! Time to pack the car up and head back to the den Otter’s to get the rest of our things. We visited Izaac, Alexander and their grandma for a little while to let Echo stretch and gather everything off and then it was FINALLY time to go home! Time to reunite our little family! 

Nekky baby to end the entry

So the not so wonderful Wednesday has passed and with it a rather stressful, tear filled day. And not only Echo’s tears sadly! Hmm where to start – you may want to grab a drink and settle in for this one… epic gong show! 

Sooo the morning… well no, the night before – Ken ran out for a quick shop to get dinner and the card WORKED (remember this, this is key) … home again, work the night and head out in the morning to get food for the day only to find that… THE CARD DOES NOT WORK! Add to that a trip to the bottle depot after finding out the boys were being helpful and accidentally put a bag of cans and bottles in the trash instead of in the shed (ouch) and then putting gas in the van only to find out there is a… COOLANT ISSUE (oh lord I can hear the groans!). Absolutely bone dry and not a drop under our parking spot at the house… and since he ALWAYS parks right there it had to occur while he was out realizing that the bank card hated us.

So while Ken is kicking himself for filling the van with gas (oops) and then rushing to get what groceries he could get I was at home getting ready… only to peek out the window and see Ken fiddling under the hood (never a good sign seeing your PROGRAMMER husband under the hood of a VEHICLE!)… dun dun duhhhhhh. Well here is where the miracle comes it – Since we had BOTH Veronika and Victoria there was also a jeep in front of our home. My glorious and trusting cousin handed us the keys solving that issue and the sweet Victoria lent us some spending cash she said on hand for any emergencies! And just like that our two angels got us back in motion!!! Seriously, without them we would not have made this appointment and rescheduling with the cardiologist the day of is really a big no no.

Now talk about luxury – heated seats, sat nav, sat radio… cruise control that works consistently (don’t ask grr van)… I had a warm bum the whole drive there! Even with the upset and chaos we managed to get into town early, swing by the den Otter’s to get some mail that came to the old house (thanks you guys!) and then to the hospital where Ken dropped me, Echo, and some of our stuff off at the door and then made the meandering drive to find free parking… Oh the horror, the drama, the excessive amount of walking Ken had to do to accomplish this seemingly insurmountable task! 16 city blocks walked one way and a wife confused as to what the heck he was up to later and we still managed to make it to our appointment on time! (seriously worth it – Ken got some exercise AND we saved like 20.00). 

Snack as we wait on Daddy

That got us to the pediatric cardiology area and the waiting room where I seriously need to get a picture of the sign up there – a kindly written piece that states appointments take 2-4 hours! OUCH but so sweet. Included in this room is a tv set to YTV and chairs… we brought a toy bag… sadly I did NOT get any sewing OR reading done but instead texted with friends and family (which helped with the wait greatly – thank you so much everyone!) and watched our Echo explore.

They decided to start us with the Echocardiogram. Echo has a full understanding of what a nurse or doctor looks like… she saw the scrubs and was NOT impressed, it took Ken and myself, sock monkey AND the tv playing a baby movie to keep her even relatively quiet and calm and whenever the nurse had to adjust the equipment she freaked!  Back to the waiting room where Echo smiled and giggled at a lovely couple and their teenage daughter.

Then the EKG and more drama with our pixie. This time we got her bloodpressure taken (last visit we had to give it up as a wash)! Again with the scrubs… so the nurse got the bloodpressure cuff on, told me to hold the limb, pushed the button and ran… as soon as she got past the curtain Echo would stop crying! AS SOON AS! Luckily the finishing beep was loud enough for her to hear and we made 3 attempts and managed. The EKG was the same thing… stickers on, attach the monitors, push the button and then RUN! 

That left the x-ray so with requisition in hand we went down to that section of the the hospital to an over full waiting room and waited. Ken went to use the vending machine, picked the same treat that got stuck last time and… well you see where THAT is going. Well after waiting at least 30 min with Ken standing (not enough chairs) we got called… to go sit in ANOTHER waiting room – this one on our own. It was rather familiar, the nurse called it the “old” pediatric waiting room but we remember it from about 5 or 6 years ago and waiting on Zander to get out from his MRI! We really have seen a lot of this hospital! We waited another 30 min or more there when I finally went up to the MRI desk to question if we were in the right place. 

Waiting on x-ray, not worth getting fully dressed as it was down to diaper for the procedure

During the extremely long x-ray wait (we still wonder if we were not forgotten about for a while, the MRI woman seemed surprised we were there but the nurse did walk us TO the waiting room) there was much watching of Echo and texting. It is  then that apparently the landlord stopped by and spooked our sitters a little. He is rather… forceful with the doorbell and  they were unsure as to who he was. Then when told we were not home seemed rather upset about it and demanded a time we would be back. He is a rather strong personality and as English is his second language can be hard to understand. Since we do not call on our cell only text we had to let it wait until we could get to internet and email them or a phone and call. So add that to the worries and then lead us into x-ray. Want a peek at how it is done? I found a good picture of it HERE, and if you read a bit down the comments you can learn a bit about the machine – apparently created by a Mr. Pigg! I have to agree with the parent that picture does not show the screaming and terror and legs kicking… I know it was for the best but after the day we had… I cried. The poor technician was like… it is not hurting her, she will be ok, it is only a few moments. They were so gentle and sweet but I cried. 

On the upside the diaper we changed at that point was poopy so that was cleaned up and a plastic bag given to us so no carseat accident and then it was time to go back to the cardiologist to actually speak TO a cardiologist. We walked into the office and the nurses were surprised it had been so long. They got us right into a room where we… big surprise here… are you ready? WAITED! Another 30+ min later and I was a wreck, worried it was taking longer due to something be wrong and Echo was worn out (no naps all day).  Finally we got to see the cardiologist. The same one as last time, he is so friendly and kind! The news was not so joyful… she is.. the same.

There is something both devastating and uplifting about the words “no change”… on one side I think I was rather unconsciously hoping that they would find a magical closure of the vein and would say “all good,” tell us she is a medical miracle and send us happily on our way… or that they would, at the very least, see some sort of improvement. We got a negative on both of those. But on the positive side, she is the same as she always has been – that little vein may have enlarged the left side of her heart to have it work harder BUT it has not stopped her from living life as SHE wants to. Unlike so many of those children we saw at the hospital. Our bitty baby has the amazing ability to draw smiles from strangers. She made countless people giggle, had others telling her hello and telling us how wonderful she is. Echo has this innate ability to bring and share joy. Her tiny stature seems to make her so approachable and her sweet giggles and smiles made even older grumpy gentleman crack a smile and in some instances coo at her. There is, in the back of my mind, a niggle of fear that this tiny miracle will be snuffed out and taken from me. I honestly did not realize that until today when I was crying and unable to figure out why. I am afraid that this massive blessing I have been giving in such a tiny body will be deemed something I do not deserve and I will one day wake up without her squeals and pointing, her ever progressing milestones and the joy she brings her brothers and sister every day. 

I mean I do understand, in retrospect, that not getting worst is about the best option we could have but as a parent you are always hoping for the miraculous recovery… the avoidance of surgery. We asked lots of questions and he was very clear with his answers. The greatest danger will be right after surgery for Echo when we find out if the piece they put in the vein will remain still and stable. That scares me… 

After over 4 hours and Ken’s 16 block walk to get the jeep it was time to meet up with Ted and get the full tour of his condo… we relaxed a bit and then went to IKEA for meatballs (we were rather worn out so it was not the best of meals but we had good company!). We dropped Ted off at the LRT and headed home. We actually got home around 8:30! So it was a full day away. Thankfully we came home to relaxed children and a house full of friends (and cousin). They had quite the day themselves with movies and playing and a dance party. I will have to share the pictures taken from that day later! As soon as we got home Ken called the landlord to find it was just a question about the house, we cleaned up, let Echo wiggle a while and were so happy to see off ALL the kids to bed. 

Emanuel

Trinity (yes that IS her sleeping in her sofa ON her bed)

And the twins

So what started as an absolutely horrible day worked out in the end… we will get our 6 month appointment in time and continue as we were… but wow what a journey to get here!

Pixie baby