forever grateful

Tomorrow, one of Chase's primary nurses will work her last shift. Her name is Anna and she has been with Chase since the very beginning. She has cared for him, advocated for him and taught us so much along the way. She sings to him, dances with him and truly cares for him. We have learned so much from her- from simple things like how to change a diaper to more challenging things like giving a bath and feeding. We are always so happy to see her and always feel a sense of comfort and relief when Chase is with her. Words cant express how grateful we are for her and the care she has shown for Chase (and Reilly). She has helped us through the most difficult time in our lives, and we will remember her always.

Big Move!

Another busy week for the Cooper kids. Chase did well on his low-flow trial. After three hours his work of breathing increased and he had a spell so they decided he had worked enough and gave him his CPAP back. Since then though, he has been on low flow for one hour each day to practice breast feeding. Today was a big day for Chaser, he graduated to a big boy bed! He moved into a crib which means that he is much more accessible for us and gets to wear clothes! It's much louder for him in a crib because it is so open but he is adjusting well. Even better news- they are moving him beside Reilly! We can't wait. He looks so adorable in his new big boy bed, with his big boy outfits on!
When we saw him in the crib, it hit us that they are growing and are almost term which means they will soon be coming home! So many people in the NICU remember them from when they were just teeny tiny and can't believe how big they are now. Monday will be 11 weeks that's we have been in the NICU- feels like one really long day. We are still in level 3 so we won't be going anywhere too soon but it is amazing to see the crib, the clothes, and the big numbers on the scale! Chase is weighing in at 2115g (4lb 10oz) and Reilly is close behind at 1820g (4lbs)!!!!!!!
Reilly is doing well too! Her steroids are done and she is still loving her CPAP. She receives an inhalant steroid three times a day which help to keep her lungs open. We've had lots of good cuddles this week with her. She is soo cute and soo compliant. Chase is high maintenance and wants to be touched or cuddled or have his soother held in place while Reilly is quite content being left alone! The inhalant that she receives usually irritates the babies but she takes it like a champ!

Here are a few pics from the week!

 Reilly all tucked in

 

 Reilly after a bath! Big belly!!

 

 Chase's new bed!!

 All bundled up!

 first outfit!!

Getting there...

It has been a busy week for our little ones. Chase was extibated last Sunday and Reilly followed suit and lost her tube on Tuesday! Both babes have been doing well on their new machines. Chase is much more relaxed and hasn't shown his crazy temper like he did with his tube. His pressures are moderate and he is in around 27 percent oxygen which is great. Reilly spent the first 5 days on biphasic which is a higher mode of support than what Chase had been on, but she successfully transitioned to the Cpap (same as Chase) yesterday. She is on high settings but that's okay! Yesterday the doctors wanted to do a trial on Chase to see if he could tolerate an even lower mode of support and he did well! The Cpap provides pressures to keep his lungs open and oxygen. The low flow, which they tried yesterday, does not give the pressure- just the oxygen. The babes are 35 weeks now so they will need to start feeding soon, and they can't do so on the Cpap (mask). They tried him for an hour and he did great! They decided to give him today off because he had an eye exam today, but the plan is to try him on low flow again tomorrow, and instead of only trying for a set amount of time they are just going to let him go and see how he does! It will be a nerve wracking day but he can do it! And like they say, we won't know until we try! Both babies have had good eye exams which we are so thankful for. Chase is weighing in at 1940g and Reilly is 1540g! There has been so much change and progress in the last week it has been great. Adam and I were talking about how it feels like this is our new life, that each day we will continue to do what we've been doing for the past 10 weeks but after seeing them try Chase on low flow, we realize that we are making progress and that soon these babies will move down the hall to level 2 and eventually we will be taking them home with us! It's finally starting to hit us that we have two babies! Crazy! All of the families that we started our journey with have either moved down to level 2 or have graduated home, and for so long we felt that those were goals that were just too far out of reach but now we know we are heading in that direction and each day we are getting closer and closer to home! We are loving all the cuddles we get to have now that the babies are tube-free. They are getting so big and cute. We will update again this week about Chase's progress on low flow and Reilly's on Cpap.

Until then, keep us in your thoughts! They've worked wonders this far!
xo

Chase on low flow!

Another milestone!

Reilly was extibated yesterday as part of the steroids plan. So far she is doing great. She's had a few spells and dips in her heart rate but they are going to give her the best chance possible because it is such a transition for her little lungs. The nurses grabbed some photos of the little piglet after they pulled her tube and before they put on the Cpap mask. We can't believe how cute and chubby she is. It's hard to believe she was just a 500 gram little one just a few weeks ago. Enjoy!

 

xo

Onwards and upwards

The past week has brought many changes for the cooper kids. Reilly has been gaining a crazy amount of weight and has the cutest, chubbiest cheeks in the entire unit. Chase's weight hasn't changed much, but he is looking much less puffy and swollen which is great. Both babes are feeding well and are looking more and more alike. 

At the beginning of last week, the new head doctor told us that he needed a week to watch the babies and get to know them, and wanted to have a plan in place by Friday. The babies biggest concern right now is their lungs. They have both been intubated for far too long- nine weeks tomorrow. Most babies are intubated for a couple days when they are first born and quickly graduate to a less invasive mode of respiratory support. Unfortunately, both Chase and Reilly's lungs were incredibly premature and have required an intensive amount of support to grow. The doctor explained that most babies lungs are like sponges, and require a balance of oxygen and pressure to keep them open and assist with oxygen-carbon dioxide exhange. Instead of lungs, our babes lungs are stiff like leather, so they need more oxygen and more pressure to inflate and deflate. We were two of the very few babies that were intubated in the unit. As the babies get older, they are becoming more and more agitated by the tube. Their movement is limited because the tube is very positional, so they are sometimes held down and secured with tight blankets, etc, to ensure they dont move too much. So not only do the babies not like the tube, but being intubated has many risks to the babies health as well. We knew the doctors plan would be focused on their lungs. Reilly's respiratory status hasnt changed much in the last few weeks. Since they changed her ventilation machine to a more natural mode, she has been happy and stable. She swings like crazy and still requires a lot of oxygen, but she was tolerating handling and was overall happy. Any time they tried to weane her though, she wouldnt tolerate it. So needless to say she was at a bit of a platuea. Chase on the other hand was extibated not long ago, and reintubated on New Years Day because he was tiring out from the biphasic. Since then, hes been able to tolerate lower pressures and lower oxygen. Every 48 hours they would try to weane his pressures, so he wasnt getting as much help to keep his lungs inflated, and was showing signs that he could do it himself. He wasnt quite ready, but was going in the right direction. So Friday afternoon we met with the doctor and he proposed another round of steroids for Reilly and diuretics for Chase to help remove some of the fluids from his lungs. The overall goal was to extibate both babies in the near future. He explained that although the steroids have such terrible side effects, staying intubated for 9 weeks has its own side effects, and after monitoring Reilly he felt that she really needed the boost that steroids could provide. He felt Chase was showing a more natural progression towards extibating, so that we could hold off on steroids for now.

This morning, we arrived and heard the news that Chase would be extibated! He was sick of the tube and they felt his settings were low enough that he was ready. At noon they extibated him and have him on CPAP,  a machine that still provides oxygen and pressure, but that also requires him to do more of the work. So far he has done fantastic! His oxygen requirements are lower and he seems much more calm and happy with the tube out. He had such a temper and couldnt settle with the tube in, so its so nice to see him finally calm. The first 72 hours he is on close watch, but so far so good! Reilly started the steroids early this morning and they are hoping to extibate her over the next few days, while she is still receiving steroids so that she has a really good chance to stay tube-free. We pray the steroids work, we pray she is one of the lucky ones that isnt negatively effected by them, and we are hopeful that this week will bring good things for both babes!

Both babes blessed us with a few good cuddles this weekend. Here are a few shots:

Dad's first time doing skin-skin with Reilly.

 someone's not happy about something!

 Chase on CPAP!

 "Get this tube out of me!"

 These pics were taken after they pulled the tube and before he was hooked up to CPAP.

 He's a CPAP babe!!

chubby, peaceful Reilly.

 reilly's hand vs. dad's hand

 a few fun shots...

Thanks for your continued thoughts and prayers. They've gotten us this far, and will continue to help us along our way. The babies continue to grow and impress us each day and we are so thankful for all the amazing moments we have with them. We feel so blessed and look forward to having them home to meet you all! xo



Seven pounds of perfection!

Not too much to report, just a few cute pictures. Babes are doing well- just resting, growing and fighting their fight. Chase hasnt been happy lately- we think he wants his tube out and Reilly "swings" lots which keeps her nurses busy. Reilly weighed in tonight at 1400g (3lb 1oz) and Chase at 1800g (3lbs 15oz). Both babes are getting big!! We are so proud of them both.

Just minutes after they put drops in her eyes for her eye exam,

 she put her hands over her eyes- too cute.

Chase during a cuddle with dad

Dad and Chase lounging in the unit

Mom's turn!

Both babies absolutely love their soothers. Chase freaks out when he doesnt have it. Think they look alike? Reilly (left)  Chase  (right)

Chase caught trying to suck his thumb! 



 p.s. the babies finally have middle names! Chase William and Reilly Grace

xo