We've gone from being told that she had only days or weeks to live to graduating from hospice care to overcoming dependence on oxygen, from 'failure to thrive' to gaining as much weight as possible for an infant in her situation. She was essentially a silent baby when we were discharged from Children's, and now cries louder and louder each week. She couldn't even lift up her own head for the first two months that she was home, and now is beginning to have head control. She even held her head up for a couple of minutes with our Occupational Therapist.
She still can't suck or swallow, but we are working on that. We've been able to get 7-10 "sucks" in bursts when she is calm. Perhaps this may lead to a full recovery of that function. One hindrance to that we believe, along with many other complications, has been the Nasal Gastric tube which essentially runs down her nose and throat 24/7...such an uncomfortable thing for a baby (we know, we've tried it, and it's awful! ).
We met with a surgeon on Tuesday and amazingly we've been able to set up an appointment for a Gastric Tube (G-tube) to be placed this Friday. Which is an unheard of turn around time. The G-tube will be so much better for all of us and will lessen her discomfort. Feeding will be better and it will be easier to keep up with her growing nutritional demands. It's a six week healing process after the surgery which places a "temporary" stomach tube in which is designed to create at tract for the permanent tube. Much like a piercing in which we will need to keep clean and air out over the first few weeks following the surgery.
We continue to get as much intervention as possible with Physical Therapy, Occupational Therapy, and Ki treatments, prayers, etc. Most recently we've been made aware of a spiritual healer who we may be seeing in a couple of weeks. Another one of those "can't hurt" kind of things, and it may be worth the road trip if she will benefit.
You may have seen the video we posted recently of Delaney cooing with me. I was trying to find other ways of stimulating her since we don't have consistent feedback from her as OT relates to hearing and vision. It's very possible that she is blind and deaf. However, when I knelt down and cooed very close to her neck, close enough for her to feel the vibrations, I could tell that she responded to it. calling back in a very cute way. It's experiences like these that tell me she's "in there" trying to connect. We long for this and so much more. If she could smile and express joy it would be so rewarding for us and would go such a long way to us feeling "normal" again.
So much of the time we feel like we are floating, or drifting. We have very little to go on as far was what to expect. We accept that it is the way it will be for the foreseeable future, but it doesn't make it any easier. Sometimes we find it difficult to share in the joy that other parents express for the milestones of their children. It's not that we don't feel happy for them and we don't resent it...we just can't help but be reminded of what we "should" be experiencing.
We try so hard to stay in the moment, and focus on what we have to do "right now". Obviously we are human and fall victim to wallowing and self-pity. However what we also experience is a deep sadness for Delaney and what SHE deserves as a child. She deserves to be able to communicate easily and bond with us in normal ways. There is so much we want to teach and show her. I want her to laugh and giggle at new sights and sounds. I want her to be happy and know what it's like to hear daddy coming home from work, to run up to me and get swept up in my arms.
So please continue to pray for us and our little angel. Especially for her surgery tomorrow, that all goes well. It will occur in the morning around 10:00am so if you have a moment around that time to think of us, please pass along your positive thoughts. Pray for all of these small changes to lead to big changes and the improvement that will help make our family whole again.
God Bless,
B & L & d
