Homecoming!

After 200 days- we are finally bringing both babies home!! We've been anxiously waiting for a bed at grand river for Reilly and haven't had any luck. Rather than sitting in Toronto waiting for beds in KW the docs have agreed to let us take her home! It will be quite the undertaking- but we are so excited! It will be so nice to be in our own house, our own bed and our own kitchen! As tiring as it will be, we know we have such great people around us that will help. We will probably be too exhausted to post but will update on home life soon. Thanks for all your thoughts and prayers! Xo

Latest update! We'll be transferring to Grand River this week! We are so thrilled! Chase will come home with us and Reilly will stay at grand river for a couple weeks before joining us back at home. Adam, Lola Joan and auntie Katie have worked hard to get the house ready for the babies (and mom)  and we can't wait to see it! So thrilled to be heading home, 6+ months later! We will miss everyone at Sinai - they've been so special to us and we are forever grateful. KW- watch out for the cutest two babies you ever did see! Xoxo

Life with Chase has been crazy- crazy good. It is so wonderful having him with us, finally allowing us to feel like parents! He has adjusted well, sleeps well, eats well! At the same time though, it is difficult having Reilly still in hospital. Often means that Chase spends most of his time in a playpen beside her crib or at Ronald McDonald with one of his grandmas. Reilly is still in hospital working on feeds. At this point, she will only bottle about half of her feeds and this changes day to day. Some days are better than others but until she is more consistent she needs to remain in hospital. The plan was originally for us to bring her home with a sylastic tube- so that we could supplement her and top her up with whatever she does not take by bottle. While this is still the tentative plan, it is looking like she may be transferred to Grand River to continue to establish feeding routines before going home. As great as the sylastic tube is- as it allows us to one day take her home- it is not a permanent thing and cannot be used for too long. With that in mind the team has referred her for a gtube. A gtube is basically the same thing but it is a tube that goes directly into her stomach from her belly instead of her nose and can stay in place for many years if needed. They believe that Reilly may need supplement for quite some time and are hoping this gtube will allow for some piece of mind- let her bottle what she likes and tube the rest. Our hope is that as she matures and gets more comfortable closer to home, she may out grow the need for the gtube but we are starting to realize it is a big possibility. The gtube procedure will take place at Sick Kids and is scheduled for the end of July, but they have agreed to let us work on her feeds closer to home, if not at home, and return to Sick Kids as an outpatient. We are grateful for the opportunity to be closer to home so that Chase can grow and develop at home in a normal environment. It will also make life easier for us as it's difficult being in the hospital during the day and up with Chase during the night. It will also allow for our family to help out more because we will be so close. We still have to be very careful about visitors and too much traffic around Chase because he is still at risk and will be in contact with Reilly who is at an even greater risk because she is still on oxygen. The hospital recommends that the babies are protected from outsiders and visitors for most of their life until they are 2 to 3 years old, with some freedom during the summer months when viruses are less common. For babies with chronic lung disease, like both Chase and Reilly, a common cold can mean hospitalization and severe conditions- some babies have even passed away. They have very little reserve which means they have a more difficult time recovering from any minor issue, especially because Reilly will be coming home on oxygen. With that said, we will have to do our best to limit visitors to the house and keep them away from other small children who carry so many bugs. It sucks! Of course we want you all to meet them and visit with them but we have been warned over and over again to protect and isolate them as best as we can and we have to follow that. We cant wait to come home and find a new sense of normal, knowing very well it will be a very different "normal" than if they were born full term. It's our new normal and we can't wait to start living it! We look forward to being back in KW and thank you for your ongoing wishes and prayers. Our road has been rough but we are better for it- and have two amazing babies to call our own. 

The babes are currently huge! Reilly is 12lb 7oz and Chase is 11lb 4oz!