Overdue

This post is long overdue! We havent posted in over a week and we know many of you have been checking the blog for updates. The babies have had a very busy few days and continue to keep their nurses and doctors on their toes! Last we blogged, Reilly had reached two pounds and Chase was recovering from surgery and was still at Sick Kids.

Well...

Chase was transferred back to Mt. Sinai Saturday night. We were so thankful to have them back together. He had a hard time settling back at Sinai, we worried the transfer was a bit too much for him too soon after the surgery. He may have been better if he had more time to settle. His oxygen requirements were increasing and his pain scores kept creeping up. They increased his pain meds and put him on minimal handling. It was a rocky few days. He was showing new behaviours we hadnt seen before- spelling (heart rate drops) any time he was handled or touched. It was as if he could sense when someone was entering the isolette. He would immediately clamp, spell, or desat. They just kept telling us he needed time to settle, but it seemed worse than before surgery so he had us worried.

Meanwhile, Reilly's respiratory situation wasnt all that great. It wasnt a whole lot different, but it wasnt improving in any way and her oxygen requirements were increasing so she too had us worried. With chronic lung disease, we know that she wont improve over night, but we were hoping that by 6 weeks and 1000g that we would at least have her respiration under control and a good idea of how to support her breathing. Seems like everyday is a bit of a guessing game with her. They decided to try giving her morphine every so often to see if it would let her settle a bit and stop resisting and clamping when she was handled. They tried it but it didnt seem to make a difference so they decided just to continuing to support her as they had been. We sat back and watched as her oxygen requirements and pressures continued to creep up.

We went home for Christmas dinner, stayed the night and headed back in Boxing Day after breakfast.
When we arrived, we were told that Chase had a bloody stool. This is an indicator of an inflammed bowel. This can be common in premies, but can also be very serious. They have told us from day one about a disease they call "Nec". What we know about the disease is that not all babies show signs of Nec, and sometimes when they do, its too late. Signs are: big, firm belly, diminished bowel sounds, bloody stool, etc. What we knew about Chase was that although his tummy was big, it was soft which was a good sign. They did xrays, blood work and another spinal tap and said that he was showing signs of Stage 1 Nec. They immediately put him on Nec Watch which means that they do xrays quite frequently and that he does not eat for 7-10 days to give his belly and bowel a break. They also started him on an antibiotic just incase anything leaks from the bowel. So not only is he trying to recover from surgery, but now he has Nec. Because he isnt feeling well, his oxygen requirements continue to climb and he continues to spell and have regular desats. Stressed baby, stressed mom and dad. Thank god for the nurses and RTs- they bring us up and keep us positive all the time.

This all continued through to Thursday night. Reillys oxygen was super high and she was constantly swining and Chase just looked so uncomfortable, showed all the signs of being in pain and continued to spell and desat. So they decided to pull Chase's tube, try him on biphasic, and change Reilly's ventilation system. Both were fairly risky decisions, but sometimes they feel that they need to challenge the babies to really see what they can do. Our fingers and toes are crossed and we are not saying much for now. We are hopeful the changes will help the babies. The goal right now is to get the tubes out of them and to let them rest and grow. We hope these changes lead us in that direction.

Chase is currently weighing in at 1600g or 3lbs 5oz (so much of it is fluid retention- he's gained 200+g in just 2 days so we expect him to lose some once he is feeling better) and Reilly did hit a kilo on boxing day at 1070g but has since dropped to 960g- still over 2lbs!

Here are a few pictures from the last week or so.

 

 

 

Merry Christmas from Reilly & Chase!

 

Christmas Eve pub break during shift change :)

 

Gifts for the babies from Santa, waiting outside our door on Christmas Eve.

 

 

 

Reilly!

 

 

 She's pretty sedated and relaxed in these two pictures. If only she was always this peaceful ;)

 

 

 

Chase

 

 

 

This is chase on the biphasic. Worst part is that you cant see his adorable little face anymore. Now he has squishy face from the mask and hat.

 

We'll do our best to keep posting. Thank you for your continued thoughts and prayers. We definitely needed them this week and will continue to need them as the days progress. Thanks to everyone for the donations made in the babies honour, and the generous and thoughtful gifts that have been sent our way over the holidays. Wishing you all a happy and healthy new year! xo 

 

 

 

 

Two pounds of cuteness!

A few pictures of Reilly to brighten your day. She weighed in last night at 910g- she is officially a 2 pounder!!! Way to go Reilly! In some of these pics you'll see her holding her arm. They had just taken an IV out and she held her arm for at least an hour afterwards. Poor little thing. She is still fighting pneumonia and having her breathing issues but she is showing us how strong she is and how much of a fighter she is everyday. She is getting so unbelievable cute. Chubby cheeks and all!

xo

Mighty Man

At 5:30 on Thursday our little man went for heart surgery. We found out on Wednesday that the Tylenol hadn't worked and that surgery was necessary. They told us that it would happen within the next two weeks but that Sick Kids was swamped. Thursday morning we got a call that they were transporting him ASAP. We soon found out that his procedure was scheduled for 8 am on Friday but that there had been some cancellations Thursday so he might have it done sooner. As the team at Mount Sinai prepared him for the tunnel walk to sick kids, dad made his way home and mom anxiously awaited his arrival on the other end. They settled us in and just told us to wait. Could be today or could be tomorrow. As the hours went by we were getting less and less hopeful it would happen. Even though mom was stressing about him needing it at all, once he was there we wanted it done ASAP so we could go back to Sinai. They told us if it didn't happen by 5 it was very unlikely to happen. Sure enough the call came in just after 5 and by 530 we kissed our little man and started our prayers. We had talked to a few other parents who had waited a few days after they were transferred so we were grateful to have moved along quickly. Those same parents also prepared us for the aftermath, shared their stories of what to expect. We sat, ate, laughed and prayed for Shea to watch over him and at 6:30 the doctor came out and told us it went okay "in the range of what is expected" was how he explained it. We were later told that the procedure had gone well and other than some muscle relaxation, he tolerated it okay. We saw him briefly before shift change and he was still heavily sedated and said that they would soon be starting morphine to try to keep him comfortable. He looked adorable and for the first time he didn't fight us with his strong hands and feet as we touched him. Shift change. We took this opportunity to run to Sinai and see Reilly who we had hardly seen all day. It felt like home at Sinai! Everyone was asking about Chase and was excited it was all done. His 3 amazing primaries were all there, so surprised he had gone and had the procedure already and were anxiously awaiting to hear how he was. It's so nice knowing our nurses care so much for our little ones, it's a great feeling.  We did Reilly's diaper change, gave her a sponge bath and headed back to Sick Kids. Chase was still sedated but doing well. They were doing an scan of his heart to see how it looked after the procedure. They explained that after 8-12 hours some babies can begin to deteriorate which can last upto 48 hrs but that SickKids was pioneering this program that allowed them to look at the post-op echo to predict whether or not he would "deteriorate". They did their scan and their calculations and felt that Chase's heart may need some help in the coming hours so they were going to start him on meds to hopefully prevent any deterioration from happening. It's amazing what they can do. With Chase fast asleep we decided to try to get a couple hours sleep so that we could be with him when he was awake and recovering. We made another stop to see Reilly on our way home and ran to bed.

Chase after his transfer to SickKids

Dad at Chase's bedside before surgery

Atrium at SickKids Hospital

When we arrived back Friday morning we were told that he had had a rough night, needed more pain meds and that he was having respiratory challenges. No matter how prepared you are, how many times they tell you to expect him to get worse before he gets better, it is still incredibly hard to watch. He seemed to be comfortable in the morning, keeping the nurses busy as usual but comfortable. As the day went on and as he started to wake up more he had a number of bad spells where his heart rate drops very low and he clenches down and stops breathing. Anytime anyone would touch him he would clamp up and they would have to manually bag him to maintain his breathing. There were a few STAT calls made on him where everyone just comes running and with so many people in such a tiny room for such a tiny person, it is impossible not to panic. We stayed as calm as could be and the doctors decided to try a different ventilation system and different pain meds and we saw improvement right away. He still hates being touched, and is still showing signs of pain, but he just had surgery so all these things are normal. We just have to keep reminding ourselves of that... Normal. It's so hard to watch him in pain though. They have little restraints on his wrists so he doesn't try to pull on anything when he's throwing his arms around. His nurse showed us how to hold him in the isolette to help comfort him and it seemed to help. We hold his head securely and then give him our hand and fingers to squeeze and sure enough he grips on tight and doesn't let go. At one point his knuckles were white because he was squeezing my finger so hard. It's the best feeling in the world when he grips on to you, like he knows we are there and doesn't want to let go. Melts my heart.


The docs came and told us that in terms of the procedure and his heart, they were happy. They told us that the behaviour he was showing now was a combination of recovery and his immature lungs. We had hoped the surgery would help his lungs, and we still hope that's the case but we know that the surgery was only a piece of the puzzle. We hope that his pain is under control this am, his oxygen is stable and that they will transfer him back beside his sister soon. It has been a crazy 48 hours for us, even more so for Chase, and now we are just going for comfortable babies for Christmas. Here are a few pictures from Chase's stay at SickKids. It is much different, only 4 or 5 babies to a room, quiet, dark, comfortable. At Sinai there are bright lights which are not good for premies, lots of people and commotion and upto 35 babies all in one room. With that being said, Sinai feels like home.

xo

Happy Holidays!

We continue to receive beautiful cards and gifts from all of you and are so taken back by everyone's generosity. We feel so blessed to have so much support and can't thank you all enough. This week, the babies received an extra special gift... new incubator covers! Christmas themed custom covers! Not only are they the most stylish, festive babies in the unit but they are also very well protected! A neighbour and friend of Rachel and Justin went way out of her way to make these beautiful covers for the babies. They fit perfectly and we absolutely love them. They protect the babies from the constant noise and bright lights of the unit! Take a look at some of the photos below. Thank you Kendra!

Reilly

 Personalized with Reilly's name on it!

 

So fancy!

We've found these teeny little hearts sewn in throughout the covers- adorable. See it right above Santa's hat?

Here she is- loving her new festive Christmas cover!

 

Chase

Hi Dad!

 

Look how good Chase's bedspace looks compared to his neighbours- most stylish in the NICU!

Little hearts sewn all over Chase's cover too. Can you spot it?

 

Chase inside his new dark and quiet incubator. He loves it!

 

 Can you see him in there?

How cute is this- one of Chase's nurses cut his temperature monitor pad into a heart shape for him. So adorable.

This shot of Dad was taken Saturday night during a fun visit with the little ones. We were given this little book that he is holding at a parent meeting this week. A dad that had a son at Sick Kids put together a collection of poems, rhymes and stories to read to your babies while they are in the hospital, specific for premies. As we browsed through the book, we realized that many of the rhymes don't even make sense, but they use sounds and patterns that the babies can recognize and enjoy hearing. (Sounds that make your voice lower which are easier for the babies to hear). We had so much fun reading these hilarious little rhymes to the babies. Chase loved the rhymes (becuase he was sating 95-100) but Reilly wasn't impressed. We think she prefers peace and quiet. Brought a few smiles and laughs to our faces though :)

Baby Update.

Chase finished his course of Tylenol and will have a scan tomorrow to see if his duct has closed but we are not too hopeful. He is showing signs and symptoms that indicate his duct is still open which will mean that he needs the ligation, or the surgery at Sick Kids. We've been told it is a common procedure and has very good outcomes, but that the babies go through a lot and usually need a week or so to recover. We think the ligation will be a good thing for Chase. Right now, with the duct open, there is a little pathway into his lungs that allows the deoxygenized blood to mix with the good oxygenized blood. This means his lungs have to work harder to pump more oxygenated blood throughout his body. Once they close the duct, the bad blood, or deoxygenized blood will no longer have that pathway and wont be able to mix. He's been pretty stable this week, they've been able to weane some of the settings on his ventilator, but he "swings", meaning that one minute he is stable and comfortable and then all of a sudden he is not getting enough oxygen and the nurses have to increase his settings to help him out. These swings are common in premies, but happen so often with Chase that they cause concern. The ligation will hopefully decrease the swings and will allow him to focus on growing instead. There are not many babies in the unit that are ventilated, most are on some method of breathing support but do not require the amount of support that Chase and Reilly do. Chase has been growing and getting bigger, and most babies his age and size are no longer ventilated or intubated. We are hoping the ligation helps his lungs enough that he'll be able to get rid of his breathing tube and graduate to a less invasive breathing-support system (like the one Reilly tested out last week). Other than the respiratory issues, Chase is doing okay! He is currently 1210 grams, or 2lbs 6oz. He has some food intolerance issues this week but is working his way back up. He looks good and brings many smiles to our faces each day :)

Reilly is the toughest little thing. We cant even believe all the things she has gone through and yet she is still in there fighting every day. It feels like she has encountered everything they said a premie might encounter in a worst case scenario. This week we realized she had a skin infection, so they started antibiotics. They said once the antibiotics started, her oxygen requirements would decrease and we'd see an improvement. A couple days later she developed another infection, this time an infection in her lungs, also known as pneumonia. So, she started another type of antibiotic. They did a blood test today which showed that her skin infection is still growing, so so far the first antibiotic hasn't been effective. Like Chase, Reilly swings too - all the time. Her monitors are always flashing and her bells are always ringing. She hasnt had a good chance to just sleep and grow, things that premies need to do! 
She needs these antibiotics which means she needs to have an IV. She has terrible veins because she is so small and has been poked so many times (which is how she got the skin infection in the first place). You'll see in the picture above that she has an IV in her head right now- which they put in last night as a "last resort". They say she has no good veins left because of everything shes been through. When we visited tonight they told us the IV in her head is getting puffy and swollen and they'll have to find a new IV site tonight. Its so frustrating. They poke her so much that she gets an infection and then they have to keep poking her to treat the infection. Her IVs are only lasting a maximum of 24 hours because her veins are so frail.
At the same time, because she has pneumonia they've been giving her medications to help flush some of the extra fluid out of her body. Well, this medication not only flushed her extra fluid, but also flushed out and depleated the sodium in her body. So, now they ordered sodium supplements to help raise her sodium levels. It is a cycle that just never ends.
Feels like one step forward, three or four steps back.  Our hearts break for Reilly. Shes been through so much and has been so tough. She just cant catch a break. We're hoping once these infections are under control then she will have a bit of a break to just grow and get stronger. Right now, shes a little mini superwoman. Her brother better watch out :)

Thats all for now. Each moment in the unit brings new developments and changes. Some days it feels pointless to even update anyone becuase things change so fast. We know we arent the only ones going through tough days in the NICU and our hearts go out to the other families who are being faced with tough decisions and uphill challenges this weekend.
Thanks for your continued love and support. Keep our little ones in your prayers.
xo

Answered Prayers

After venting about life in the unit, I headed back for a late night visit to read both babes a story and tuck them in for the night. It was as if the nurses and the babies had read the post and knew I was upset, becuase Chase let me hand-hug him for almost an hour without any desats or spells and Reilly's nurse let me give her a sponge bath! Before I left for the night, Chase's nurse said that if he had a good day I might be able to hold him the following night. Both babes also gained weight that night and mom left a happy girl.

Last night, after a long day in the unit and a long day at work for dad, we inhaled our dinner and rushed back into the unit. As soon as we arrived, Anna said that he was ready for us! She called an RT over and soon enough Chase was in our arms! I've only held him once before and he is so much bigger now! He has the blondest eyebrows, and little blond hairs all over his arms and back. He is cute beyond words. I got to hold him for an hour and a half! Best part of is was that his Dad was worried his head was getting cold so he would place his hand over Chase's head to keep him warm and cover his eyes. On Tuesday night we went to a meeting to learn about interacting with the babies while their in their incubators and they told us that if you do something and your babies saturation levels increase, then they like whatever you are doing. Well, when his dad would put his hand on his head, Chase's saturation levels went to 100, as high as they can go, and would stay there. He loved it. As soon as Dad would take his hand off, they would slowly decrease. We've learned that Chase really likes to feel contained. They say that premies are always looking for boundaries because they are used to being enclosed. So Chase will often stretch out and throw his arms around, kick his feet out, arch his back, etc and we are realizing that these are all signs that he wants to be comforted. So if we place our hands over him during these times, he often calms downs and his levels balance out. Learning so much everyday!  Here are a couple shots:

 

 

 

This is Anna, one of Chase's primary nurses. She is so great. She hums and sings to him every time she enters the isolette and she stays so calm all the time. She calls Chase her "Biebs".

 

 

 

 

Chase stole the show last night. Reilly received a blood transfusion again this week so she is looking much better. She is fighting a new infection this week, a skin infection, so we arent handling her at all. She was poked so many times for an IV last week and every time they poke her, they create a spot for infection to grow, so they assue that is how she caught this bug. Poor little thing cant catch a break. Hopefully the anti-biotics will work fast and well. She is up to full feeds now so hopefully she starts to pack on the pounds :) 

Happy Friday!

Funny how things work.

As soon as I finished posting "Vent", below, the first thing on the next site I saw was this:

Thanks Shea.

Vent.

The babies are one month old today. It is hard to believe an entire month has passed. So much has happened, yet on so many days we feel like we are standing absolutely still. So many babies have come and gone, like visitors passing through the unit. Reilly and Chase have had many neighbours, and although there are babies who have been there longer than us, it is hard to watch the others come and go. We are so proud of our little ones, they have been through so much and are so strong, but there are days that we feel so defeated.

We know that every baby in the unit is faced with their own challenges, and we know not to compare- but it is hard. It is hard to watch all the other moms hold their babies for hours a day. It is hard to watch babies the same age or size breathe room air, with no ventilation at all. It is hard to watch babies grow, reach milestones, and thrive. All of these are amazing, happy, wonderful things, but to be surrounded by all of these wonderful things each day and feel like you don't get to experience them yourself, it is hard not to feel defeated. I am thankful for each day I have with our babies. I believe that we will get there, that we will reach these milestones and be able to hold them soon, but the road to get there is long and is taking its toll. Most days, their teeny little fingers and toes, and their little personalitiies that shine through in their facial expressions and body movements are enough to keep us going and to boost our strength. And then there are the other days, that no matter how many people tell you you're strong, you feel down. I guess it is all part of the rollercoaster. 

Being with the babies is all we can do right now. Stay strong for them, be with them, talk to them and love them. We're grateful for everyday we have with them and we'll stay focused on getting them home. We'll just make time to vent along the way. 

thanks for all the love.
xo. sio.  

Overwhelmed

We've titled this post "overwhelmed" but for different reasons than you are probably thinking. We are overwhelmed in a good way- by the love, generosity and thoughtfulness that we have felt from all of you. We have been so touched by everyone who has reached out to us and our families. We have been so spoiled with your beautiful messages, comments on our blog, phone calls, care packages, giftcards for food, gas, and more- you have all helped make this experience as easy as possible and we wouldnt be able to get through it without you. Thank you.

Our families deserve a special thank you for all they have done for us through this. We know it isnt easy for them, and we definitely couldnt do it without them. From making a month's worth of food every week, adopting a dog, making deliveries to the hospital, chauffeuring us around TO, listening to us vent, keeping us positive when we're down and so much more, we are who we are because of you and we're as strong as we are becuase we have you behind us. Thank you.

This week we received some extra special gifts- our first items with the babies names on them! What a surprise! Our eyes were filled with tears as we held Chase and Reilly's first Christmas ornaments, and our first keepsake in honour of Shea. We will cherish these forever. Thank you.  Take a look:
 

We were also notified of special donations made to the Ronald McDonald House in honour of Shea, Chase and Reilly and we were so moved by this. We will forever be grateful for the oppourtunity to stay here, and are so thankful that donations have been made so that others are given this same oppourtunity. Thank you.

We've also received an incredibly generous gift from sio's school family. We couldnt believe it and are so grateful for it. Knowing they are there, thinking of us and praying for us everyday is so touching. When a group pulls together to do something so special it reminds you of how good people are. Needless to say, we feel so loved and are so thankful for everything.


We're beyond words with everyones generosity. We feel so blessed to have each of you behind us and we know you all are thinking of us. We have everything we need and more and are so grateful to each and every one of you. Tomorrow will be 4 weeks since the babies arrived. Each day we are one day closer to having them home and having you all over for the biggest Thank You Party ever.

xo

Baby Fix!

The babies have had a few busy days lately. Chase was extubated, reintubated, received a blood transfusion, cuddled with Dad, got a new "Igloo" (isolette), gained 20 grams and claimed title of cutest baby in the unit- of course awarded by mom! Reilly gave mom a great birthday present- two days at much lower oxygen requirements- and still hanging out in the twenties! Way to go Reilly!! Here are a few pictures from the past couple of days:

Reilly!

 

Reilly's teeny tiny toes

 

The nurses ran to find me to show me how pretty she looked with her eyes wide open. Isn't she gorgeous? That big green thing is her soother. Its as big as her face but she loves it!

 

 

 

 

 

Chase!

Dad sweet talked the nurses and convinced them to let him hold Chase this morning. Lucky for him, they had to change his isolette anyways! This is dad's first time holding him!

 

 

 Blowing bubbles!!

 

 

 

 

 Looking up at dad. Check out the elf ears!

 

 

 

Fast asleep on his dad!

 

 

 

 

This is a shot of Chase just after they extubated him!

 

Chase celebrating the Kilo Club!!

 

 

We are hoping for good days this week! Reilly is almost at full feeds so she should start to gain weight now. Her oxygen is lower now so we think the steroids are helping, hopefully that keeps up this week too. Chase is trying Tylenol to see if that will help close his duct, otherwise he will be making a trip to Sick Kids sometime next week for surgery. We will continue to take pictures and share as the week goes on! Thanks for following xoxo