Day 80-84: Proof of miracles

I sit here in awe, not sure what to write because I'm simply shocked by how much Lily has progressed in the past month! She is, in short, doing marvelously! And she is thriving. AND WE ARE GETTING READY TO TAKE HER HOME! We don't have a date yet, but doctors are saying "soon, within a couple weeks - get everything ready".

Lily will be receiving her pre-discharge exams this week- echocardiogram, blood workup, brain scan, hearing test, and eye exam. Fingers crossed on each! Doctors are also staring to wean her from her diuretic and sodium/iron supplements, preparing her for au naturale living :)

On the pulmonary side, things have also shown remarkable improvement in the past week! Doctors are weaning her, slowly but surely, from the nasal cannula- weaning her from oxygen entirely. Astonishing! Her pressures are now at 1/8 liter... an adult typically gets 2liters of pressure, for comparison's sake. Doctors are warning us that she could come home on oxygen and Pulse-Ox monitor, but at the same time are also saying she might kick the cannula before she leaves. So here's to kicking the cannula!

And - Lily is no longer desat'ing. When she eats, while she sleeps, or while she's awake- her blood oxygen has been in the 97-98% range! Her lungs sound clear, and in short- she is breathing really well. Considering her lung condition, BPD, has been by far her biggest challenge, she is without question winning the battle for her life. And it is awe inspiring to look into her eyes.

She is eating well, and has moved successfully to two whole bottles a day, supplemented by her feeding tube. Tomorrow she may get three bottles, depending on what they decide at rounds. She tires out a little bit during her bottle, but whe. I give her a burp she wakes up and takes the rest. And she is gaining well! She weighs 5lbs 4oz now. More than triple her birthweight, in 10 weeks!

The thought of bringing Lily home is so, so exciting! Addie is excited, Sara is excited, and I am excited. I think even the cats and dog are excited. It's been a wild summer, that's for sure. A summer of stress, a summer of fear, a summer of blood transfusions, blood acidosity, tpn fluids, antibiotics, diuretics, supplements, ventilators, oscillators, incubators, oxymeters, echocardiograms, SiPAPs, CPAPs, pneumatoceles, atelacteses, PDAs, and brain scans.

But most of all, the summer of 2012 was a summer of HOPE! 

All the medical jargon, all the fear, all the anguish will one day be a distant memory - but hope lives. Like a delicate flower, HOPE LIVES!

Our hope... our Lily of Hope. She has overcome every odd, defied every statistic. Her survival is more proof than I will ever need that miracles DO happen- every day. In little things, and in big things - miracles exist. 

The next time you feel overwhelmed, at the end of your rope, or standing on the edge with a piece of dental floss holding you back from the abyss... remember Lily. Remember Hope. Because miracles exist.

I'm certain of it...  I've held one in my arms.

Thank you all, again, for your support and for following our family's journey this summer. The outpouring of love and well-wishes has kept us going through thick and thin. Knowing that we were not alone during the scary times helped tremendously. Thousands of people all over the world have been thinking of lily,  praying for her, and sending positive energy her way. I have no doubt in my mind that this has helped her and pushed her along. Your support has been part of what will make this story one with a very, very happy ending. Thank you!