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

Thursday was an overcast and cold morning… appropriate with what our day had in store. I was up BEFORE 4:30 am just due to nerves and Echo half waking up, so Ken, Echo and I snuggled in bed until I had to be up at 4:30 to shower and collect the pile of items we needed for our hospital adventure. And boy did we take A LOT! There was ALL of Echo’s buddies (Petite Sheepette, Alaskan Sock Monkey and dolly) as well as Fat Sheep and the puppy that plays Echo’s bedtime music. As well as the diaper bag, our snacks, the bag of “stuff to do” for Ken and myself, our overnight suitcase, the camera… the list goes on and on.

Ken “5 more minutes” himself into a rush but even so we were out the door by 5:15 and on our way to the hospital groggy baby in hand. It was a hard drive just with the anticipation of so much unknown and out of our control. The roads were pretty empty and we made good time and were there BEFORE 6. Which apparently meant NOTHING was open/unlocked. So we had to wait in the mezzanine. 

15/20 min later it was time to go into the pre-op and get the ball rolling… VERY SLOWLY… We were the first of 3 families in the door and the first to be checked in. They had to remake her red bracelet that had her blood number on it (it was way too tight and we had to cut it off), check her heartrate, breathing, temperature etc etc. We had to put on the little pink striped pj’s and discuss her cough yet again! They also put the numbing cream on her hands and covered them with plastic to start the process for an IV.

Can you tell Mommy was tired?

Pink striped!

After all that fun stuff was done it was time to hurry up and wait (it was around 6:30 at this point), apparently we had to be escorted up to the surgery floor which is in the new heart institute wing of the hospital. BUT there were only two nurses in at the time and the 3rd not slated to be in until 7. So we had to wait  for the 3rd to come on. That gave Echo time to poop (yay disposables thank you hospital), play and Ken to sneak some quick naps. 

At 7 we packed up our stuff and were off to the next stage… another hurry up and wait, this time in a rather small room. This one had so little room we had to crowd in our stroller and big glass doors. Echo was exhausted and fell asleep on me (I got the sole chair in the room) and Ken passed out for a while as well (he sat on the floor). The head anesthesiologist came in after we had been there about 30 min or so to talk about Echo’s cough (again!), explain that they were waiting on the surgeon and to ask if we had signed consent forms (nope). Then back to waiting. 

Finally the surgeon stopped in at like at quarter to 8 and chatted and we got the forms signed. Then at 8/8:05 it was time to walk to the or. I took Echo personally. It was hard… they had this tiny bench to lay her on and since the numbing cream also shrinks veins on the hands they could not find a good vein… so it was the gas. She fought so hard, crying and wringing her hands as we held her still and then… limp… that scared me. She looked so tiny and so breakable. And then I had to leave…

Leaving her there was one of the hardest things I have ever done in my life. I had to rush myself out soother in hand so that I did not grab her and take her with me. The head anesthesiologist helped me find the main desk and Ken again thankfully where the receptionist handed me a whole box of tissues. Everyone was very understanding and no one made any sort of comment about how I should NOT cry (which is great cuz you could not have stopped me if you wanted to!). They have changed things a bit now – you don’t have to go and sit in a specific waiting room. Instead they take contact info (cell phone, etc) and give you a pager (looks a lot like the ones you get when waiting on a restaurant seating at The Mall) that works anywhere inside the hospital. We were quoted 2-4 hours on the length of surgery. And since I was so upset the receptionist made sure to call our cell to ensure we had the right number etc. 

She gave us directions to the cafeteria the served breakfast and told us to not worry too much and off we went. After a rather sad and quiet breakfast that I have to admit I only picked at we decided to wait in the closest waiting area to the surgery. This one had multiple tvs all set to different channels, some comfy couches and a place where Ken could charge his netbook. Thankfully I brought STACKS of manga to read to keep my mind occupied. 

The whole wheat blueberry pancakes I didn't eat

Comfy seat

A bit of a surprise, but after only ONE hour we were paged back to the surgery floor. We wasted NO time and were there in minutes. They then had us sit in a little waiting room (one without beds and monitors) to wait and see the surgeon. This took some time too (I assume they call you with time to the end of the surgery as if you are anywhere in the hospital it can take time to get back) and Ken stole ANOTHER nap while we reminded ourselves that the receptionist said she came through just fine.

We waited for our surgeon for a while who then came in and discussed the surgery and her post op care. He said that she did very well, and that they ended up putting in the memory metal barbell shaped piece (apparently her open vein was shaped like a funnel). We have to keep her on one baby aspirin a day for 6 months, if we notice her bruising easily we go down to every other day. As well they found a minor upper chest infection on her right side so she is on 10 days of antibiotics. On top of that we come back in a month for a check up. She was still mildly sedated and needed to keep her legs straight for a while. He let us know that we would see him again before we left (with the next day being the hoped for date) and that she was ok and then it was time for MORE waiting. 

Once whatever needed to be done was done and Echo was awake they brought us into the little glass door room we were in before to meet up with her again. Apparently she didn’t cry at all… until she saw us and then it was tears and a feeble attempt to get out of the bed. So into the bed went mommy to keep her still… and her legs straight. They wanted her legs straight until 1:30 (it was around 10 at this point). Thankfully she was kept somewhat sedated post surgery for a while so it actually wasn’t that difficult of a goal. I got to ride on the bed all the way to the wing she was to stay in over night. Poor baby was NOT happy. 

The iv... you can see the red from the stuff they put on to keep the area germ free

Her room had only two beds in it and when we got into it the second bed was for a newborn who left relatively soon after we were settled in. Each of the beds had a tv included. Ours was already set for Treehouse. They had to do the usual – heartrate, blood oxygen,  respiration and of course bloodpressure. Echo HATES having her bloodpressure taken. And with her iv in her foot she was rather cranky all round. They tried, it looked like, at least 5 places to get an iv in! 

Watching Treehouse

Poor Echo was groggy and lethargic for pretty much the rest of the day. Later on we ended up with a new roommate (a teenager who fractured her foot and needed surgery) but the day was rather quiet. We waited until it was past 1:30 and Echo could move a little more before we told Sean to come over and see her. He and Ken then went out to Subway to get me a late dinner. They don’t feed the parents after all, but there is a lovely little kitchenette with snacks for the kids in it so I was able to keep tempting Echo with different foods through out our time there. 

Ken napping on my bed

We really just spent the day focused on Echo. It was quiet with the nurses coming in from time to time to check on Echo and record things. We got to our room in time for Echo to have lunch (sort of… pick at) and then dinner… Ken stuck around until almost 8pm but he really couldn’t stay the night. That left Echo and myself to sort ourselves out. She didn’t fall asleep until past 9pm… 

Just us girls

As a added snuggle buddy for our healing baby I also finished up one of the owls I had in my to do bag to give to her. Oh and put her YAY you made it through surgery bow on for some special photographs! 

With bow

I tried to sleep before the 11pm check with the nurse but there was a baby on the ward that I later found out was basically starving itself for some unknown reason who was screaming for over an hour. Thankfully after 11 I was able to curl up and fall asleep. It was a bit of a hidden blessing that we DID have to wait a day for surgery. The weather took a turn for the nasty on Thursday with a fresh fall of snow. 

Snowy

It was a very difficult day but Echo came through with flying colours and caused nurses to fall in love with her all over the place. I am so very thankful to EVERYONE at the hospital who had a hand in her diagnosis, surgery and recovery. Everyone has been so wonderful. I am equally thankful that this entire experience is to be a one time thing! 

A sign our baby is getting better... she rolled over!

And so the Echo surgery saga ends… I am beyond relieved that it is all done now. I have not been so scared and in need of all the love, positive thoughts, prayers and hugs that were send my way in a very long time. And of course, as in all things related to the Reinsch-Johnson family the path the this surgery and the healing after was NOT smooth. So how to best tell the story… well I guess we start at the beginning.

Monday night the Chrises came to the house – one to drop off the car we borrowed to ensure safe travel (thanks He for the loan of your car!!) and the other to be here for Tuesday and begin her stint babysitting. We had a 12:30 am appointment in the Pre-Operation section off the pediatrics division in the city to drive to. This had us leaving the house around 10:30 to be safe. We still cut it REALLY close with Ken dropping myself and Echo and most of our stuff off at one of the entrances and then doing the usual drive a ton of blocks to find a free parking space. 

Saying good bye to our sitter

Then there was a moment of panic when we went up to our normal cardiologist office only to find they had not record of our appointment and had to call around to figure out where we were supposed to be. The information Ken got over the phone when the appointment was made was not clear on which floor we needed to be on. they are both in the C section but our cardiologist is on the 4th floor and the pre-op was on the first. One above the other. Once they found out where we were supposed to go we headed back down to the main floor to register. 

In the stroller and ready to be examined

Once we got there there was a lengthy form to fill out as well as some questions they asked before we even DID anything. There was a bit of an uproar over Echo’s long standing cough that had them bringing in the anesthesiologist to listen to her chest and check her breathing. If there had been an infection in her lower lungs that would have been the end of the surgery right there. Thankfully all of her coughing and phlegm movement was in the upper chest and they okay-ed us for surgery (as long as it did NOT get worse).  We also had to do the weigh and measure (she is officially over 18 lbs which may have been her threshold for this heart issue as the past week had us seeing her showing actual symptoms of her PDA), blood oxygen levels, temperature, blood pressure and all that fun stuff. 

Pretty in pink

During that process we also agreed to be part of a study where they take a little extra blood during her surgery and keep it for data on heart issues. There is no benefit for her BUT for other children and it has us doing nothing extra. Ken and I agreed that it would be lovely to be able to assist other families, especially with no extra effort on our own part. 

The last step was to head over and get blood taken. This is very important as with heart surgery they make sure to set aside blood for a transfusion in case of need. So they put a red bracelet on her ankle with a number on it that was NOT to be lost! She was a real trooper during the blood taking, I had KEN hold her for that one. With that final step done we had our time – 11:30am surgery which meant coming in at 10. No eating past midnight, no breastfeeding past 7:30am and no liquids after 8:30 (clear). So we packed back up and headed out the door. We gave the hospital our cell, home and the landline at the den Otter’s as they needed contact info. And that was that.

While waiting on Ken to get the car (he parked way out there remember) I noticed that I went from TONS of texts to… NONE! and then one from Telus stating that our special 2500 messages thing that we have going on each month did not have enough money in the account to update! Well that was WRONG, we had put the money in well in time for that the weekend previous. So it was time to hunt down a Starbucks and utilize their internets. Of course Ken was… agitated and told the person so so they were as helpful as possible. They fixed our messaging AND gave us 5 days of unlimited (I later figured out local to where the phone is at the time only) incoming calls. WHEW! We were back in contact business.

So then it was time to stop off at Bulk Barn to get treats for surgery time for the adults and munchies for the pre surgery meals for our pixie and then on to the den Otter’s house where Alan had come home early from work to meet us when we got there. And that is where all our carefully made plans just sort of blew up. 

Alan and Izaac

Apparently while we were sorting out our phone issues the Stollery had tried calling the cell and then moved on to our next contact number – the den Otters. Apparently there was an emergency case that came in that in turn bumped us from our Wednesday surgery time leaving us with two options – Thursday or the following week. Of course we did not make it home before the office closed. Thankfully the woman was back in at 6 am so all we could do was settle in at the den Otter’s and set an alarm to wake up early and get everything sorted out. 

The baby with a temporary reprieve