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.
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!