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
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