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Our Beautiful Lily could really use all the LOVE ❤️ , positive thoughts , and prayers from anyone and everyone....
We took her into the ER on Sunday night and she diagnosed with pneumonia. She was given an antibiotic and sent home with no worries.... or at least we thought....
Early Christmas morning she took a turn for the WORST, and we rushed her to the ER because of breathing difficulties, because she was in respiratory failure due to pneumonia and while having RSV. She was sedated and put on a ventilator to help her lungs and body recover from the intense over breathing and working to try and oxygenate herself.
She was then transferred to a PICU and has been here trying to recover. She is one STRONG , AMAZING ⭐️ and INCREDIBLE little girl who has shown all of us how remarkable and resilient she really is!!!
Our Lily and family would appreciate any prayers and well wishes you can give. Because of the tremendous outpouring of love and support we have already received, it is hard for us to update everyone individually. I will be leaving updates here when I can on our Beautiful little girl.
*** And we are so INCREDIBLY thankful and blessed to be surrounded by family and friends supporting our family through this incredibly difficult time ❤️
UPDATES:
12/27/18
(5:30am)- She was taken off the ventilator yesterday and is now breathing with just a nose cannula CPap type machine. She is awake and speaking a few words to give her requests and to answer those of her. We are trying to get her breathing more regulated as of now.
(11:10am)- Lily was put back on the ventilator to help rest her lungs and little body because of the infection and the other methods not working best for her. She is a fighter and is doing much better with this option.
(6:52pm)- Lily is doing much better with her breathing on the vent. Her numbers are getting so much better and she is resting more. Thank you to everyone that has texted or messaged me and my family! We truly appreciate everyone’s kind words and thoughts.
12/29/18
To say today was the “roughest” day of our families’ life, has to be the grandest understatement!!! Our Lily has proven just again how much STRENGTH, DETERMINATION and POWER she has within her!!! Within the past 53 hours, our little girl went from just having a breathing tube to be transferred to a hospital with the highest level of care to having to go on ECMO to save her lungs and heart and allow them to rest and heal. We had thought we had lost her but with the amazing medical staff and Lily’s determination and WILL to live, she is doing okay. She has a very skilled team monitoring her at all times and helping her to recover. All we know is that our Lily has ceased to AMAZE us and hopefully she will continue to show how STRONG and POWERFULshe really is!!
1/1/19
TODAY IS A NEW YEAR! Today Lily has shown us that she needed this new year to start! She has had very up and down moments throughout these last 7 days, but today we celebrate Lily being super stable throughout the night and into this beautiful morning! Her body is working with the machines so far on helping to keep her stable and move forward with healing. There are still so many unknowns and not for sures, but we are very hopeful and taking each day as it comes! She is still on ECMO, ventilator and kidney dialysis machine. The medical staff have been work super vigilant to figure out what are the factors that are impacting her progress.... we think they have found them and have been fixing them! There aren’t enough words to say THANK YOU to everyone and anyone who has taken any time to pray and send positive thoughts and support to our Baby! She is so strong and is continuing to show us this! Please continue your prayers and positive thoughts for our Lily! They are showing to be SOOO SUCCESSFUL!!!
1/2/19
Our Lily is UNBELIEVABLE!!! ✨ She has had a wonderful day...
- When I was talking to my daughter today, I said to her “I love you Lily” and she moved her tongue like to say I love you Momma. She also did this 15 mins later Andre said the same thing to her and she did the same response and finally 30 mins later she did the same thing after my mom (her Nana) said the same thing!!!!
- When I was tickling the bottom of her right foot, she jerked it away! She also moved her big toes slightly when touched!
- The medical team has been able to take out 10 mLs of excess fluid every hour so it will reduce the excessive swelling
- Her blood pressure has been stable all day
- Her kidney function numbers are almost within the normal range
- While suctioning her mouth, she began to suck on the suction tube
- They are having to increase she sedation because she is moving too much
- They have also been able to tilt her side to side the bed to prevent bed sores and vitals stayed stable
THANK YOU FROM THE BOTTOM OF OUR HEARTS ❤️❤️❤️ for all of the prayers , love and support !!! We know Lily is feeling all the love being given to her!!!
We took her into the ER on Sunday night and she diagnosed with pneumonia. She was given an antibiotic and sent home with no worries.... or at least we thought....
Early Christmas morning she took a turn for the WORST, and we rushed her to the ER because of breathing difficulties, because she was in respiratory failure due to pneumonia and while having RSV. She was sedated and put on a ventilator to help her lungs and body recover from the intense over breathing and working to try and oxygenate herself.
She was then transferred to a PICU and has been here trying to recover. She is one STRONG , AMAZING ⭐️ and INCREDIBLE little girl who has shown all of us how remarkable and resilient she really is!!!
Our Lily and family would appreciate any prayers and well wishes you can give. Because of the tremendous outpouring of love and support we have already received, it is hard for us to update everyone individually. I will be leaving updates here when I can on our Beautiful little girl.
*** And we are so INCREDIBLY thankful and blessed to be surrounded by family and friends supporting our family through this incredibly difficult time ❤️
UPDATES:
12/27/18
(5:30am)- She was taken off the ventilator yesterday and is now breathing with just a nose cannula CPap type machine. She is awake and speaking a few words to give her requests and to answer those of her. We are trying to get her breathing more regulated as of now.
(11:10am)- Lily was put back on the ventilator to help rest her lungs and little body because of the infection and the other methods not working best for her. She is a fighter and is doing much better with this option.
(6:52pm)- Lily is doing much better with her breathing on the vent. Her numbers are getting so much better and she is resting more. Thank you to everyone that has texted or messaged me and my family! We truly appreciate everyone’s kind words and thoughts.
12/29/18
To say today was the “roughest” day of our families’ life, has to be the grandest understatement!!! Our Lily has proven just again how much STRENGTH, DETERMINATION and POWER she has within her!!! Within the past 53 hours, our little girl went from just having a breathing tube to be transferred to a hospital with the highest level of care to having to go on ECMO to save her lungs and heart and allow them to rest and heal. We had thought we had lost her but with the amazing medical staff and Lily’s determination and WILL to live, she is doing okay. She has a very skilled team monitoring her at all times and helping her to recover. All we know is that our Lily has ceased to AMAZE us and hopefully she will continue to show how STRONG and POWERFULshe really is!!
1/1/19
TODAY IS A NEW YEAR! Today Lily has shown us that she needed this new year to start! She has had very up and down moments throughout these last 7 days, but today we celebrate Lily being super stable throughout the night and into this beautiful morning! Her body is working with the machines so far on helping to keep her stable and move forward with healing. There are still so many unknowns and not for sures, but we are very hopeful and taking each day as it comes! She is still on ECMO, ventilator and kidney dialysis machine. The medical staff have been work super vigilant to figure out what are the factors that are impacting her progress.... we think they have found them and have been fixing them! There aren’t enough words to say THANK YOU to everyone and anyone who has taken any time to pray and send positive thoughts and support to our Baby! She is so strong and is continuing to show us this! Please continue your prayers and positive thoughts for our Lily! They are showing to be SOOO SUCCESSFUL!!!
1/2/19
Our Lily is UNBELIEVABLE!!! ✨ She has had a wonderful day...
- When I was talking to my daughter today, I said to her “I love you Lily” and she moved her tongue like to say I love you Momma. She also did this 15 mins later Andre said the same thing to her and she did the same response and finally 30 mins later she did the same thing after my mom (her Nana) said the same thing!!!!
- When I was tickling the bottom of her right foot, she jerked it away! She also moved her big toes slightly when touched!
- The medical team has been able to take out 10 mLs of excess fluid every hour so it will reduce the excessive swelling
- Her blood pressure has been stable all day
- Her kidney function numbers are almost within the normal range
- While suctioning her mouth, she began to suck on the suction tube
- They are having to increase she sedation because she is moving too much
- They have also been able to tilt her side to side the bed to prevent bed sores and vitals stayed stable
THANK YOU FROM THE BOTTOM OF OUR HEARTS ❤️❤️❤️ for all of the prayers , love and support !!! We know Lily is feeling all the love being given to her!!!
Organizer and beneficiary
Lily Strong
Beneficiary