A Quick Update!

Finally, another post! It's been a few days since we have updated the blog, and although we wish there were new, amazing things to share, the truth is there isn't much new or exciting to report at all. We know you are all checking in with us often, which is amazing, and we hope to have big milestones to blog about soon. For now, you are with us on this long and slow roller coaster ride.

We've been using the word "touchy" a lot this week. Both babies are having their own issues, mostly to do with their lungs. Any time they are handled (diaper change, blood drawn, temperature check, etc.) they "spell" or "dsat". We joked today about giving Reilly the middle name Blue or Violet because that is the colour of the saturation line on her monitor, and the line we cant take our eyes off because it fluctuates so much. As soon as they are handled, or even sometimes just hear our voices, they require more and more oxygen to breathe. The problem is that the more they need, the less they are doing on their own and we need them to work on strengthening their own lungs to get those awful tubes out of their mouths. Because they are so touchy, we havent been able to do much with them. Most parents get to hold them, do skin to skin with their babies, change their diapers, check their temperatures and more. On a good day, when the babes are stable we can check their temps and change their diapers, but have yet to be able to hold them outside of their incubators. We can't wait for that! Will be a great day :)

Chase needed a blood transfusion, which they hope will help with his oxygen levels. They've been giving him a sedative to help with pain and to help him relax and sleep but he is as busy as ever. Kicking his legs and stretchings his little arms out as if to say "ta-da"! Today we finally snapped a shot of both eyes open! He looks so cute! So cute that he even picked up a third primary nurse! He is a ladies man, that is forsure. He looks so much more real with both eyes open. We swear he is looking right at us, but they say all he can see at this point is light, not even figures or outlines. The picture doesnt do it justice and is kind of hard to see, but isn't he adoreable? He is getting 10mls every 2 hours, a little beast!

 

Reilly is just as cute! She is up to 580g now (just a little more than a lb of butter), which we think is good because they had to stop her feeds for a couple days after her transfusion and start them all over again, super slow. She is getting 1ml every 2 hours now.  She is swimming in her diaper! Stretched out, its just as long as she is! They have her hands tucked in there so she doesnt yank on all her wires and tubes. She is the trouble maker these days.  She is being treated for an infection right now, even though they arent convinced she has anything. They are super cautious- any sign of infection and they treat right away, and then test her soon after. Fingers crossed she doesnt have anything. It is amazing how much her little body goes through each day. She will be the toughest kid around by the time she is home! One nurse tried to explain to us that one 12 hour shift can equal 7 years of medical issues for them. So the same amount of issues that arise,  blood work, xrays, ultrasounds and doctors visits that a normal baby would have over 7 years these little peanuts have every 12 hours. Crazy.

They still aren't side by side becuase they are on different types of ventilators and they say it is too much machinery to move, and would mean two sick babies side by side :(  They like to have a more stable baby beside a sick baby, like ours, so that it is balanced for the nurses. We are hoping within the next few weeks they will be able to be closer together.

 

Mom & Dad are doing well. Trying to get into a schedule so that we are useful in the NICU and finding time to rest in between. It is hard to be in there when they aren't doing well, but the minute we leave we want to go back. It will be easier when we can do more with them, right now we mostly just sit at their bed side and talk with their nurses, hoping they hear and feel us with them! Dad's thinking about going back to work soon, just not sure when.

 

Thoughts and messages and cards and more continue to come our way and we cant thank you enough. You all have a part in this ride with us, making life a little easier for us day by day. Thanks to everyone who has reached out to our families too, it means so much. We can't wait to have them home in KW. It feels like these are the most loved babies in the world right now, which is exactly what they need. Thank you all so much.

 

Can't believe we had that much to write! Off to tuck the babes in for the night. We'll give them kisses from all of you. xo

Chase & Reilly

Not much new to report. Chase and Reilly both kept their nurses busy today as their levels were jumping all over the place. Chase's nurse says he has an attitude - she told us today that she "chased" him all morning. Cute. He opened both eyes for the first time today but we have yet to see them both open. Reilly couldn't get comfortable today but her favourite nurse is back tonight so we know she'll have a good night.  They mimick each other- her levels will drop, then so will he. They say twins do that. Troublemakers already!

Here are a couple pictures, not many. Will take more tonight at our visit.


Chase straddling a towel. 770 grams (back to his birth weight!)

Last night was Mom's first time holding Reilly! The most precious 560 grams you've ever seen.

Riding The Waves

We are learning more and more each day. This week we've learned the true meaning of ups and downs, of this rollercoaster ride they keep telling us we are on.

We arrived back in town Monday night anxious to see the babies. We knew Chase was struggling while we were in KW so we couldnt wait to get back in to see him. When we finally got into the unit, we learned that Reilly too was having her own trouble. Chase was okay but Reilly was having a hard time breathing. We were so exhausted from the day, that the sirens and dingers seemed louder and more annoying than ever.

The doctor came to talk to us about Reilly. He explained that Reilly's lungs were struggling and that from here on out it would not be an easy road. No doubt. But he put it in perspective for us when he said that we are not at the bottom of a steady incline, slowly making our way up. We are riding the waves. We will have good days, and bad days. Monday was definitely a bad day. We were so overwhelemed we didnt stay long, but Reilly's struggle continued well through the night. She needed a blood transfusion and her oxygen requirements were so high they were worried. When we made our way back into the unit on Tuesday morning, things werent much better. They were trying new things, put her on a new ventilator, changed her pressues and were hoping she would show signs of recovery throughout the day.

What we are learning is that there are no quick fixes. They cant change something and magically the babies do better. It is trial and error and it is slow. We had a hard time being in there yesterday.  We found ourselves wondering where our strength would come from. How strong can two people be? How can we be strong and positive when everytime we go into the NICU we get bad news? Needless to say we both felt defeated. As the day progressed, both babies slowly started to stabilize. We hugged our phones throughout the night and prayed for a better day today.

This morning, both babies had their primary nurses which brings us such comfort. Their primary nurses know them, becuase they are assigned to Chase or Reilly every shift they work. Reilly has a wonderful nurse who gives her so much love and cares so much about her. Chase is blessed with 2 lovely primary nurses who know him. They know what he likes and what helps him settle. After the two "bad" days, we were so happy to see their primaries. They both had better days today! Chase's oxygen requirements had come down and Reilly was showing signs that the new ventilator was helping her little lungs. Chase's feedings were increased to 4mls every 2 hours (what a pig!!) and best of all, he had a poop! Reilly just started feeding again after the blood transfusion but we know she will catch up quick.

After the bad days, it was so nice to have a good day. We realize that our strength comes from these small steps forward: increase in feeds, lower oxygen, calm, sleeping babies, no spells, etc. We have to focus on the progress they make, the strength we have together and the reality that there will be bad days. Hopefully, though, for every bad day there are two good days and that there are more steps forward then there are back.

We realized this week that our road is long. We also realized how much we are loved, how many prayers are being said for our family and just how lucky we are. We have been so overwhelmed by the love and support everyone has sent us:  gas cards, grocery money, beautiful words and cards, flowers, messages, restuarant certificates, beautiful baby items, and most importantly your thoughts. We have been so touched by everyone's generosity through all of this. We know you are all thinking of us, praying for us and sending us all your positivity and we really appreciate it. We love that you are reading the blog, helps us feel more connected. Hopefully we will have more pictures soon! Thanks again to everyone, we are forever grateful.

xo Sio & Ad

Shea Kelly

Yesterday we laid our beautiful angel Shea to rest.

We had a beautiful ceremony that celebrated her precious life. It was a difficult day for both of us, and for all those around us. We dont have many words to say now other than we are glad she is at peace, in a beautiful children's garden close to home so that we can visit her often. As Joanie said, she has "sunshine to warm her, trees to shade her and other children to play with". She will always be with us and always be remembered. We know she is with us, Chase and Reilly now and will always be watching over us. We're blessed to have such a beautiful precious angel.

Meet our Miracles!

The nurses let us grab a few pictures yesterday and we are so excited to show you our miracle babies! They are teeny tiny- weighing in yesterday at 510 grams (Reilly) and 720 grams (Chase). They're also the most precious thing we've ever seen. 

Here is Reilly, waving Hello! She is always stretched out, dancing and moving around. This shot was taken as Dad was changing her diaper.

 

 

Here he is! The first temperature check and diaper change without a nurse!

 

 
Here is our little man. This was his first time laying on his tummy. The nurse left his bum open and placed the diaper underneath so we got a few good bum shots. He was mooning the whole unit yesterday, putting on quite an adoreable show! 

xo Sio & Ad

A Typical Day

We thought we'd give you an idea of what a typical day is like down here. We are thankful for every minute we get to spend with the little ones, even if we are just staring at them through the glass, and feel a pull back to them the moment we leave.

Chase and Reilly are in the Neo-natal Intensive Care Unit at Mt. Sinai Hospital. They are on the same floor we were on before and after we delievered. It was a much shorter walk from there, or usually a quick wheelchair ride if Adam had his way. It is an amazing unit that holds upto 32 babies. There are so many lights and buzzers and sensors going off that at first it is incredibly overwhelming. You look up at every light that goes off and hope its not for your baby. We are starting to get used to noises now, becuase we are starting to understand what they mean and why they are going off. All the nurses are incredible and take time with us as often as they can to explain what they are doing and why they are doing it. They try to get us as involved as possible. Dad has changed Chase and Reilly's diaper, and Mom just changed Reilly's for the first time yesterday. We have yet to hold either of them outside of their incubators and expect it will be a little while longer before we can do that. We have to phone in each time we enter the unit, wash our hands a gazillion times and use hand sanitizer every time we touch her incubator cover, or our jeans or hair or anything. You instantly become as paranoid as possible. They are so tiny so infection is a major concern. The unit is open 24 hours a day, and it is hard to stay away but the nurses are so great so we know they are always in good hands. We can talk to them from outside the incubator and sometimes even open their little windows to tell them we are there. Reilly goes nuts when she hears Dad's voice. She cant stop moving when he is around. Its adoreable. They aren't placed side by side but we can keep an eye on Chase's monitor from Reilly's bedside and make plenty of trips back and forth.

So we usually head over there in the morning for our morning check in. Spend time with them. Mom pumps. More time with them. Pump. Another visit and maybe slip away for a nap. Dinner. Visit. Pump. Visit and then peel ourselves away for the night. When we were staying in hospital we, or mostly Adam, would go and visit throughout the night as he was the Milk Delivery Man. Its harder to do so from here, and we are finding ourselves so exhausted so are trying to sleep as much as we can during the night. It sounds like we are there a lot but our visits tend to be short because Sio is still in lots of pain and cant handle long visits. Dad is clocking lots of hours though and the babies love it. Its really hard to find a balance because we want to be in there so much, but have to keep ourselves healthy too. We cant go in if we have any symptoms at all- no cold, cough, sore throat, anything! So we are trying our best to stay healthy so we can be in there for the little beans. Only parents hands are allowed anywhere near the unit. Its even hard for us to keep our hands away but we know how important it is for them to be as germ free as possible so we are touching with our eyes! Adam does some hand-hugging, which is when you place your hand inside the unit and hug the babies. They dont like to be touched lightly, they like a firm hold so that is as close as we've got to holding them for now! Another tough thing is that you cant bring in phones or cameras, so we dont have any pictures of Chase or Reilly in their unit. Hopefully soon we'll find a way to capture some of these precious times. Both of their eyes are still shut, hoping they will open in the next week or so. They yawn and stretch and pee and make lots of facial expressions, but no open eyes yet. We cant wait to see them looking up at us!

So that's that! We are limiting visitors for now because it is so incredibly exhausting when it is just us, let alone having others around. We know you are all thinking of us and wanting to be here for us. Know that you are- your support and love is being felt and we are grateful. Until the beans get a bit more stable we are going to just focus on letting them grow and get strong and that way you can all meet them sooner or later. Doctors think they'll be here in the NICU until sometime in January, at which point they'll move to Grand River until sometime around their due date - end of Feb. We cant wait to bring them home and have you all over to meet our little miracles.

Yesterday was World Premie Day. They lit up the CN Tower purple in honour of all the premies. Take a look:

Thats all we have for now. We head home to KW tonight for another tough day tomorrow where we'll lay our beautiful angel Shea to rest. Keep us in your thoughts tomorrow, we'll need all the strength we can get.

Cody, here we come!

To give you an idea...

We aren't quite ready to go through this week's happenings yet, so in the meantime we'll give you an idea of what our new life is like, for now.

We are staying at the most beautiful house- they call it a house, we call it a resort! Adam says he even feels guilty being here becuase it is so nice. We are staying at the Ronald McDonald House, which is just about a 2 minute walk from the hospital (about 10 minutes for slow-sio). We have a beautiful room with a view of the CN Tower. It is pretty much a beautiful hotel room, with enough room for 4 to sleep, a little lounge area and a huge tv. Beyond our room, the House has everything- a gym, beautiful library, great common area, a school games room, movie theatre, laundry and the most amazing kitchen you've seen! There are 6 kitchens that all look like their own TV set! 8 or so families share each kitchen space. Ace Bakery delivers bread in the morning, milk is delievered to each family and volunteers come to make dinner a couple nights a week. Jealous yet? Here are some photos:

It's just beautiful. They've done such a good job of creating a space that lets your mind relax before the next trip back to the hospital. I know most of you are wondering the same thing, "Do we get all the Big Macs and French Fries we want?" Not exactly. We havent seen any McDonalds food yet, the volunteers say that when food is sent for community dinner its much more than fast food, but we havent caught a family dinner yet. Lots of Mcdonalds coffee and tea and even some baked goods. We aren't without, that is forsure!

We are so thankful to have this place to call our own for a little while.

Our Story...

This is a place we will use to help keep in touch through our journey. We are so grateful and thankful for all of your wonderful messages, thoughts and prayers that you have been sending our way. We are hoping this blog will help you feel apart of our journey, as we'll update it about Chase and Reilly's progress and our stay with them in Toronto.

It has been a rollercoaster week and we have lots to share. We will write about our first few days as parents soon. What we can tell you now is that we are thrilled to be parents and we have become stronger together than we ever could have imagined. We are filled with hope and love and are grateful for each and every day as a family.

Updates and pictures of our precious little ones to come soon.

xo Sio & Ad