Our Cooper Crew: February 2013

The good thing about long delays between blogs is that there is lots of news and progress to tell you all about! So much has changed since our last post that we are so excited to share with you!

Last we blogged, both babies were still in the NICU Level 3, Reilly on CPAP and not tolerating high-flow and Chase was on a 12 hour low flow- 12 hour CPAP trial while he was learning to breast feed.

Well!! Big news! After 94 days, we have graduated from Level 3 and have moved our way down the hall to the Level 2 Nursery!! Level 2 is one step closer to home and means that the babies are stable and doing well! Our ticket to Level 2 is all thanks to Chase and his super work on Low Flow. Last Monday, the doctors decided to try him on 24 hours of lowflow, instead of the 12 hours low flow and 12 hours cpap, they wanted to just keep him on lowflow and see how he would do. Well, he impressed us all and he hasnt needed his CPAP back! He has been a lowflow babe for the past week and is loving it. 48 hours on lowflow buys you a ticket in Level 2 where babies are more stable, parents are more invovled, there are fewer nurses, dim lighting and less alarms. Our only problem was leaving little Rei Rei (who isnt so little anymore) behind in Level 3. She isnt yet a Level 2 contender, but level 2 is much more hands on and we were worried that we would be so consumed in Chase that she would be left behind. Well, lucky for us- a spot opened up in the Annex with Reilly's name on it! The Annex is a small room attached to Level 2, which is reserved for Level 3 babies who are somewhat stable but who require more than what Level 2 can handle. So they can still be on CPAP but be in the Annex (Level 2 doesnt take CPAP). It is for Level 3 babies who have been around a long time and who are "chronic babies" where not much changes day to day. There are only 4 annex spots, and they rarely come open but our timing worked out well so she could come too! We were so thrilled. So they are both in the same room now! Not beside one another but close enough that we can keep an eye on them both. An added bonus- their primary nurses follow us to the annex and to level 2, thank goodness! We are so incredibly attached to their nurses, and cant imagine going through this without them.

Days in the Annex are good but long (both babies are technically in the annex although Chase is in a level 2 spot). Parents do much more of the care with Level 2 babies so we are there for all of Chase's feeds and handling during the day. He is breastfeeding four times a day now, which is a lot for him, and he gets one bottle over night. He will gradually increase in oral feeds- whether breast or bottle- but each change is a big step for these guys because he has to work so much harder and we dont want to exhaust him or cause any increase in oxygen or anything. We have stopped topping him up after breastfeeding, which we were doing in the beginning and he is still gaining weight which is great. Everyone is thrilled with his feeding progress! Tonight he weighed in at exactly 3000 g!! 6 lbs 10 oz! Premie clothes no longer fit him and even some of the newborn outfits we have are too short! He is so long and is looking so good! He loves his crib and has even been spending time in a bouncey seat these days. Feeling more and more like a real baby these days. He is still a ways away from coming home- needs to get off LowFlow, has to have improvement in his weekly eye exam (they are both on a weekly followup because they are so high risk), needs to be at 8 oral feeds a day, and needs to keep growing! But he is moving in the right direction and we are so glad.
Reilly is doing her thing too! She is such a different baby than Chase. He wants to be held and loved and fed all day, but Reilly is so calm and easy. She sleeps all the time, in any position, on any one, under any light! She is so cute and SO chubby. It is hard to believe she was so small just a few weeks ago. Now she is so fat. They have been adding extra-everything to her food to help her grow and it is definetly working! She has made great strides lately too. She transitioned out of an isolette into a big girl crib yesterday and is maintaining her temperature and loving it. They tried her on high-flow again last week so that she could try oral-feeds and she tolerated it! She did much better than the week before, and slowly increased from 1-2 hours a day. This weekend, they tranistioned her to high-flow all the time, instead of just for an hour or two. So far she has done great! They say that it is not exactly a step up from cpap, it is more of a lateral move from CPAP to HighFlow. But she can do more on high-flow, like start breastfeeding! Which is key before she can go home. So to us, it is an improvment! She is looking great and is loving that she can wear clothes now! She had an echo this week to look at her heart and it showed some issues that they will have to follow closely over the next little while. Pulminary Stenosis, which is a narrowing of the valve that exchanges blood between lungs and heart. It is okay now but if it continues to narrow then it may need intervention. They are also monitoring for ASD and two small holes in her heart that may need to be repaired in the future. These cardiac issues will be followed up at SickKids though and may or may not affect when we get to bring them home, only time will tell.

The babies are almost 40 weeks! Their official due date is this Friday. Its amazing how far they have come. They are true miracles and we are so, so proud of them both. We are exhausted now, and know that it will only get busier as the babies get closer to coming home. No one has given us a date yet, or discussed transferring to Kitchener, but the move to Level 2 makes it feel much closer. It sounds like Chase will be ready for home before Reilly, so depending on how she is doing she may stay at Mt Sinai or move to Grand River. If either of the babies need any followup at Sick Kids, they may opt to keep them here rather than have us commute which would mean we could end up with Chase at Ronald McDonald with us, and Reilly still in the hospital, but we will cross that bridge when we get there. Over the next few weeks we need to hope for good eyes, strong heart, hungry bellies, and healthy lungs. And a bit of sleep for mom. Adam went back to Kitchener tonight, he is working in KW now and will be on daddy-duty on weekends. It will be hard for us without him here, and hard for him away from us. We are getting a glimpse of actual parenthood- with days so long and busy that leave no time for ourselves or for visitors. We know you are all thinking of us and would all be here as often as you could, but your thoughts and prayers are all we need right now. That and a bit of homecooking from Lola J's kitchen. Here are a few pictures from the past two weeks. Enjoy the chubbiness of Reilly and the Adam-look-alike in Chase.
xo

Reilly's squishy CPAP face

loves her bath!

check out his huge hands and his hair line... mini adam!!

first time in his bouncer!

Chase's fun crib- loves his aquarium tv!

daddy's girl :)

Meet Mayela! This is Reilly's other Mom. She is her primary and has been with her from the beginning. We have learned soo much from her, and she loves to put Adam to work! We have been so lucky to have her and On-ni.

seriously too cute.

Happy Valentines Day!

Quick shot of Chase after he ripped everything off his face! Wild man!

Valentines Princess!

Reilly on HighFlow!

Big Girl Bed!! This is On-ni! Reilly's other primary nurse. She is so wonderful and is the most optimistic and positive person we've met.

Rei Rei on High Flow! No more mask :)

"Stop taking pictures of me!"

check out that belly button! It's huge! It is an umbilical hernia- common in premies. Intestinal wall is thin, so any time he cries or pushes or grunts it pops out. Craaazy. If it gets super big then he'll need to have surgery, otherwise it'll take care of itself.

loving her crib and cute outfits!

one last cuddle with dad before he goes

As always, it has been far too long side our last post although it doesn't feel like there is that much to say! No news is good news in our minds! We have had too many busy, eventful days with these little ones that we are thankful now for some quiet, uneven til days where we can just enjoy and watch them grow. Chase is loving his big boy bed and is insanely adorable in it. It's so fun wit te crib because he is in clothes and is easily accessed! He is a handful though! He wants to be cuddled and loved and have his soother held in place all hours of the day! Unlike his sister who is (now) the easiest baby ever- which the nurses will agree was not always the case! She used to be the one who kept everyone busy but now she likes to be left alone and just hangs out in her little isolettr. She's on the crib list though too!

Chase is on a new trial of 12 hours of low flow and 12 hours of Cpap (mask). This type of cycling allows him to stay on low flow for a longer period of time so that he can breastfeed and then gives him and his lungs a rest at night to be ready for the next day. So far he is doing great. He definitely gets tired by he end of the 12 hours but he is impressing us with all he can do! He is gaining weight which is great, especially because we aren't sure how efficient he is breastfeeding yet while he is learning but he is doing well! He is currently 2590g - 5 lbs 11 oz!

Reilly's respiratory situation hasn't changed too much. She is still on Cpap which is great. They've tried a few thing a over the last week or so to challenge her but she has quickly let them know that she is not ready. The babes are 37 weeks and 5 days old so the doctors really want them to start breast or bottle feeding , but as long as she has that Cpap she can't. They tried her on a system called high-flow which is similar to Cpap but just uses nasal prongs which would allow her to feed but she did not tolerate the hanger well and required more support than high-flow could provide. She just needs more time! She is looking so big and chunky! For everyone who loves a fat baby- you would die to see her neck and back folds. She has fat pockets everywhere and they are the cutest things ever. She looks way bigger than chase but is actually a pound lighter! She is currently 2080g which is 4 lbs 8 oz which is amazindfb considering she was only a 500 gram baby. Unfortunately over the last week or so she hasn't gained any weight at all, is still he exact same amount so they are a little concerned about that. They had been adding extra fortifier and calories to her food and once she tarted to gain they tried to scale back a little but as soon as they did that she stops growing. Hopefully she will get back on track this week. Chase is almost ready to move to level 2- once he transitions to full time low-flow then he could go to level 2 which could happen in a couple weeks time, but Reilly is a bit behind chase and will definitely buy us a few extra weeks in level 3. We dont mind because we are so used to it, and it's better than having one baby at one end of the hall and the ther down the other end, but hopefully she will make some big gains this week and catchup to her little brother.

Both Adam and I did hit a very special milestone this week- we were able to hold both babies at the same time! Because chase and Reilly are side by side the nurses were able to coordinate a double hold. I had an audience when I held them, people even had tears in their eyes! And when Adam held then, Nancy one of our favourite RTs stopped and said that it is so amazing to see, because they have worked so hard on our babies and to see them finally be able to do things like a double cuddle was so amazing for her. So nice to hear and see that our babies have meant so much to so many people. Everyone in the nicu has been so wonderful to us and we are so thankful for everything they have done to get our babies as strong and healthy as they are. They are true miracle workers!

Here are a few pictures from the week: