As evidenced by the title of this blog, yes, it's true - we are going home. :) There is both good and bad to this reality. The wonderful thing is that we get to be in the comfort of our own home and provide Lucia the best possible care we can there. Also a great thing is that Lulu has shown some improvement in the past 24 hours - you can tell just by the way she has been interacting with us. She is much more alert and aware of her surroundings...and she's doing one of my favourite things -- crying when I put her down after carrying her for a while. Is that cruel? :) I just LOVE that she wants me to carry her (I mean, I don't always love it -- I do have things to do sometimes -- but I LOVE it - she KNOWS ME!). The flip side of this is that she is still sick. Her left lung is still collapsed. Because of the hole in her heart, congestion and fluid-up on her lungs will always be an issue. Since we have chosen a less invasive way to treat her medically, there is very little to be done, except your prayers -- and they are working by the way.
As I previously said, it is a miracle that she is still alive -- and I really realized how big of a miracle today. Doctors have been preparing us for the worst since Monday, and it is because her oxygen levels have been so low. They fall into the 40s and 50s frequently (remember that normal is 90-100). She always seems to wiggle her way out of these low oxygen spells, but more often than not, she is living on a very low oxygen supply - and probably has been doing so since birth, where she was turning blue on a frequent basis. This is probably medically inexplicable. Through God's grace, your prayers and her strength, she is living and bringing joy and lessons to many people.
Before we get ready to head out, I want to ask for another prayer. Another T18 baby is in the hospital. Her name is Trishtan and she is 7 months old and is experiencing alarmingly similar issues to Lucia. Please pray for the health of this beautiful and precious little girl.
Lucia brings life and joy to everyone around her including those that have met her and those who have heard her story. Ramia and Fr. Anthony, she gets her strength from the two of you. Lucia is so blessed to have parents like you. I love you, Lulu. . . you are the best swiper I know. xoxo :) May God continue to bless your family on this journey.
ReplyDeleteLove,
Auntie Gracie
Prayers and love
ReplyDeleteWhat a blessing to be able to take her home. It is not cruel to be glad when you hear her cry -- it is being able to see the blessing in it. I remember after I brought Daniel home from a week long scary stay in PICU when he was only 6 weeks old (he had RSV, pneumonia, pleurisy, and a collapsed left lung), I loved the sound of his crying. To me it meant that he had air in his lungs; it was like music to my ears. (Daniel has been saying extra prayers for Lucia.)We will continue to pray for both your strength and hers.
ReplyDeleteLove,
Cristinette and the clan
I'm so glad that you can take her home! Thinking of you all, please keep us updated!!
ReplyDeleteSending my prayers your way xo
Rahme
**hugs** Prayers are coming our way!
ReplyDeletePraying continually for little Lucia. And for strength for both of you. Every moment, every cry, every direct look is a miracle. None of us knows what the next minute, hour, day holds. Prayers are the power behind medicine. So we will all continue to offer our prayers for you all.
ReplyDeleteMuch love from The Dutcher Crew.
Dearest Lucia, Kh. Ramia, and Abuna Anthony,
ReplyDeleteWord of another powerhouse of prayer working hard for you: My former schoolmate, Mother Susanna, is abbess of Our Lady of Kazan Skete in Santa Rosa CA. Whenever I phone her, she asks "How is little Lucia?"
I phone (or write) because they have chosen not to link to the internet. If they only knew how brightly this Child of the Light shines! Today I have printed the entire archive, and shall mail it in the morning, so they can see with their earthly eyes the radiance of your love and the power of this mediium.
This comment has been removed by the author.
ReplyDelete