Britian's Pulmonary Interstitial Emphysema (P.I.E.) did not improve overnight. So first thing this morning when I arrived at the NICU I got the news that they were going to be doing some aggressive therapy to try and heal her lungs. The only things I really heard were sedation, paralysis, and morphine. All of these steps were taken to stop her from breathing on her own so that the high frequency ventilator could do all the work for her. They also want her lungs to collapse a little so that the P.I.E. can hopefully heal itself. Britian will be like this for the next 24-48 hours.
The pain of seeing your baby girl paralyzed is indescribably painful. I held her hand and caressed her feet up until the time she was paralyzed. I stared at her intent on remembering and savoring every moment of her beautiful limbs kicking and moving around. Now she lays limp and unmoving, hopefully resting and healing.
As I pen this saga they are yet again making more changes to my sweet girls' situation. She is also now on Nitric Oxide (NO). NO in this situation is used as a medication to help move the oxygen in her blood to the healthy and open parts of her lungs. They also added a bronchodilator to help open her bronchial tubes. This is of course all in addition to frequent chest xrays and heel pricks to get blood gas and blood pH levels.
To say that this has been a hectic day so far is an understatement. Only recently have I been able to calm down and regain my composure, enough composure at least to speak in a normal voice. Up until about an hour ago I was weeping, quiet, and removed. I had had enough of the business of Britian's room so I retreated to Jillian's bedside to be with her, sing to her, and watch her non-paralyzed body move. I love all the expressions my girls make, it is so painful to not see these from Britian today. But I am holding on to prayer, my faith, and hope that all of these interventions will work in her favor and she can come off of sedation very soon.
The pain of seeing your baby girl paralyzed is indescribably painful. I held her hand and caressed her feet up until the time she was paralyzed. I stared at her intent on remembering and savoring every moment of her beautiful limbs kicking and moving around. Now she lays limp and unmoving, hopefully resting and healing.
As I pen this saga they are yet again making more changes to my sweet girls' situation. She is also now on Nitric Oxide (NO). NO in this situation is used as a medication to help move the oxygen in her blood to the healthy and open parts of her lungs. They also added a bronchodilator to help open her bronchial tubes. This is of course all in addition to frequent chest xrays and heel pricks to get blood gas and blood pH levels.
To say that this has been a hectic day so far is an understatement. Only recently have I been able to calm down and regain my composure, enough composure at least to speak in a normal voice. Up until about an hour ago I was weeping, quiet, and removed. I had had enough of the business of Britian's room so I retreated to Jillian's bedside to be with her, sing to her, and watch her non-paralyzed body move. I love all the expressions my girls make, it is so painful to not see these from Britian today. But I am holding on to prayer, my faith, and hope that all of these interventions will work in her favor and she can come off of sedation very soon.
continuing to bombard heaven's throne for your little ones
ReplyDeletePraying!
ReplyDeleteI'm praying Alexis, every moment. God is faithful and he can heal your girls. Praying for wisdom for the doctors to help in this process.
ReplyDeleteLoving thoughts and continual prayers...
ReplyDeletePraying with you through this challenging experience. Praying you continue to find little moments to find joy in.
ReplyDelete{{{hugs}}}
~Erin
Just know that many, many are praying with you.
ReplyDeletePraying for your strength and being surrounded by God's peace and love.
ReplyDeleteI have been praying for your and your girls. I'm sorry you've had some setbacks, I hope the rest helps.
ReplyDeleteoh praying!!
ReplyDeletePraying hard for your family - for emotions and all that you're going through. I am an identical twin preemie who's now in my 40s. So this touches me deeply as I read your updates and hear your pain. It brings me to my knees to pray more and more for your family. Thank you for sharing your prayer requests and your pain. It helps us remember to pray more, even though it may be hard for you to write out each thought.
ReplyDeleteJulieanne