Did you miss me last night? I was way too tired to blog, so I decided to skip a night. Now to get you caught up...Good news: After 22 days (including time in Wichita) WE'RE OUT OF ICU!! We got moved to the floor last night around 11. It was a bit of a rough first night...between breathing treatments, feedings, and managing Lia's pain, we didn't get much sleep! On the floor, Ryan and I are both able to sleep in Lia's room. There is a couch-like thing for one of us and the other sleeps in the recliner. We switch back and forth several times throughout the night, depending on whos helping with the feeding or rocking her, etc. We went and checked out of the RMD House this morning, and got all moved into Lia's room! I'm excited to get to sleep by her side again, but it was back to reality being up almost all night with her!
One month ago today, Lia was born! What a month it has been! I never in my wildest dreams would've imagined having to go through everything we've been through, but I praise God everyday that she's still here with us on this earth, and growing healthier everyday!
Diaphragm Update: Dr. OBrien (cardiologist) informed us that her diaphragms are in fact moving paridoxically (opposite each other). However, the movement is very tiny, and since Lia seems to be tolerating it well, and is breathing ok, we will not need surgery at this time. The nerve that connects to her diaphragm is damaged due to her chest being opened so many times, but can heal itself over time (which we are hoping for) or it may remain paralyzed, which would need to be monitored, and then a decision on surgery would be made to fix it. We heard today that it could take up to 3 months to heal, so we won't know anything on that for a while.
Here on the floor, they are making things as close to what it will be like at home for us. When Ryan and I are awake and in the room, they turn off Lia's monitors, because we will not have a monitor to stare at when we're home. I've learned how to count her breaths, and evaluate if shes breathing too fast. I have also learned how to administer all her formula and medications through her feeding tube. Since she is still not taking the bottle well, and doesn't like the taste of the Enfaport, we will most likely take her home with her feeding tube in. We have also had to re-learn how to hold her due to her fragile sternum and incision. She will not be able to be picked up from under her arms for a long time. We have to do the "scoop" method. Her immune system will also be very weak for a while. So, everyone will need to wash hands before holding her, and obviously, if you have a cold or are sick, you'll have to stay away!
They haven't really given us a time frame as to how long we'll be on the floor. Lia is the one who is calling the shots here. We have to wait for the drainage from her chest tube to decrease some more, and wean her off her breathing treatments (which are up to 8 hours apart now. We started at 4), and she has to prove for a few more days that she is still able to tolerate the paralyzed diaphragm. So, we're still taking it a day at a time, hoping and praying for more good news each day.
Thank you again for all the continued prayer and for checking in on us!
One month ago today, Lia was born! What a month it has been! I never in my wildest dreams would've imagined having to go through everything we've been through, but I praise God everyday that she's still here with us on this earth, and growing healthier everyday!
Diaphragm Update: Dr. OBrien (cardiologist) informed us that her diaphragms are in fact moving paridoxically (opposite each other). However, the movement is very tiny, and since Lia seems to be tolerating it well, and is breathing ok, we will not need surgery at this time. The nerve that connects to her diaphragm is damaged due to her chest being opened so many times, but can heal itself over time (which we are hoping for) or it may remain paralyzed, which would need to be monitored, and then a decision on surgery would be made to fix it. We heard today that it could take up to 3 months to heal, so we won't know anything on that for a while.
Here on the floor, they are making things as close to what it will be like at home for us. When Ryan and I are awake and in the room, they turn off Lia's monitors, because we will not have a monitor to stare at when we're home. I've learned how to count her breaths, and evaluate if shes breathing too fast. I have also learned how to administer all her formula and medications through her feeding tube. Since she is still not taking the bottle well, and doesn't like the taste of the Enfaport, we will most likely take her home with her feeding tube in. We have also had to re-learn how to hold her due to her fragile sternum and incision. She will not be able to be picked up from under her arms for a long time. We have to do the "scoop" method. Her immune system will also be very weak for a while. So, everyone will need to wash hands before holding her, and obviously, if you have a cold or are sick, you'll have to stay away!
They haven't really given us a time frame as to how long we'll be on the floor. Lia is the one who is calling the shots here. We have to wait for the drainage from her chest tube to decrease some more, and wean her off her breathing treatments (which are up to 8 hours apart now. We started at 4), and she has to prove for a few more days that she is still able to tolerate the paralyzed diaphragm. So, we're still taking it a day at a time, hoping and praying for more good news each day.
Thank you again for all the continued prayer and for checking in on us!
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| My amazing family! One month ago today our little miracle was born! |
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Baby Ella's Family
Continued thoughts, hugs, and prayers to you all!