This morning we prepared Delaney for home care. They removed all the remaining IV lines, removed heart rate monitors, temp monitors, and respiratory monitors.
Around 1:30 we were discharged and made our way home. It was very scary to venture out of the loving care of Children's Hospital. Away from so many caring souls who not only diligently watched over Delaney, but took us under their wings. We have made connections with tremendous minds and hearts who are absolutely in the right field.
The primary care physician, and many of the nurses who cared for us were in tears as we left. They wished they could have done more for us, and I know that in their hearts they want our precious angel to recover. They are faithful people, which surprised us. Each one of the specialists sat with us personally, cried, and tried to console us. They took such personal interest in our family. Each success and each failure was met with elation and devastation respectively. The were true human beings who never lost sight of the fact that all of out hopes and dreams were tied to this beautiful baby, who has had such an impact on this world in such a short time. Unfortunately, with what they know in western medicine the prognosis isn't good. In their eyes, she may only survive days, weeks, or months. No one can really say. It's in God's hands, and Delaney's heart - which is strong despite it's defects. She's such a fighter.
All I know is my daughter is resting comfortably on my chest, breathing easy, and I'm loving our healing embrace. She's cooing from time to time, stretches and arches her back. She's even grasping our fingers. Her breathing has been much more easy and rhythmic even better than it was yesterday. The notable shudder in her breathing that seemed to scare even the doctors has all but subsided now that she's home and in my loving arms.
Our home has a different look to it. We have a lot of hospital equipment to get used to. She has an O2 concentrator, an infuser, and a suction device to help clear her secretions from her mouth, nose, and throat. There are some new noises and beeps and buzzes, but it's all here to keep our angel as close as possible. She has a feeding tube which runs in her nostril and down to her tummy. We give her breast milk and meds through a syringe, and while it all seems so alien and strange, we will do anything to give her a second chance.
The one thing that every doctor said, is that "we never know". We have hope. All of this can be very overwhelming at times, but we are coming to terms with this new set of standards. In many ways this is like coming home from the hospital all over again. A "new" baby with different needs. We have to learn a whole new set of skills.
As we settle in to the task at hand, we will be agressively pursuing alternative medicines. We have not lined up treatments concretely but we were actually encouraged by the doctors at CH, to pursue "any and all options". I know that they so badly want for all of this to go away and return our sweet Delaney to the way she was, in what seems to be ages ago, but was only a little over a week's time.
It was more than a little stressful this afternoon, but after a wonderful visit by two close friends who brought food and good cheer, and complete with Lindsay's Dad who will be staying over for the next three days we know we will be able to get comfortable with this difficult job.
We love you all for the continued support. At our core we are strong, and we know that we will get through this. We thrive on your thoughts an prayers and energy.
We love you all,
B & L & d