I don't have enough time to answer every question, and I encourage you to take a few minutes to do some research on your own, but here are the answers to a few questions asked recently:
> I've seen Joe & Kendra a few times, and they tell me that they and their boys are all doing well. I know they'll appreciate your continued prayer.
> I'm talking to some people about the jewelry. I got tons of email about this, and if you emailed me, I promise to get back with you as soon as I can...
> Gwyneth is weighed at least twice a day. She was 1lb 6oz at birth, and like most newborns, she lost a little in the following days. She is at 1lb 5oz right now, and will not gain much until they can really begin feeding her, which will hopefully be in the next few days.
> They do swaddle Gwyneth most of the time, but they also allow her to move around and kick and stretch to help her growth and strength.
> At least in the US, whenever a set of new lungs becomes available, at least two listed patients are called, and the lungs are usually given to the patient that is the best match. The lungs and donor are given an extremely thorough evaluation to determine if they are indeed healthy. Lungs are good for transplant up to 6 hours once they are taken from the donor, but donors are often kept "alive" (although brain dead) for several hours until recipients can be found for their organs.. Of course, the sooner the better, and the surgery usually takes place within 24 hours of the death of a donor.
> Make sure that you are reading the info that I am giving you very carefully. I said that the average life expectancy post double lung transplant is about 8 years. Some patients die in surgery, and some patients like 16+ years. There is no way to tell what the next day holds for anybody living with any kind of transplant. Tricia is young and healthy, so the stats say that she should well exceed 8 years, but again, that's not a given. Some patients are candidates for a second and even third transplant, but many choose not to...lung transplant surgery is the equivalent to your body as being in a severe car accident...extreme trauma.
> Most transplant patients do die because of the diminished health of their new organs or because of rejection or infection. Without a cure for CF, or some miraculous advances in medicine and technology, Tricia will not be alive in 20 years.
> You can find out a whole lot more than I could ever tell you about organ donation/transplantation at UNOS.ORG
> Gwyneth's pug is a Webkinz that was given to us for Christmas. She won't have many stuffed toys as she grows up (for her mother's health), but this one is safe with her for now.
> I appreciate all of the comments about how scary the NICU, etc. must be, but to be honest, the past 7 years with Tricia has prepared me well for the present situation. They haven't done much to Gwyneth that I haven't seen done to Tricia, and I've finally convinced the nurses in the NICU to stop being so apprehensive when explaining things to me...I've told many of them that they'll have to do a lot more than stick and prick to scare me (and yes, I realize that there will probably be complications of some kind that will be scary...I'm still human).
> Tricia has only been able to speak with her voice when she is sitting in a certain position the past few days. This is not due to anything the nurses have done...there is probably simply a leak in the vent tubes that is allowing some air to pass through her vocal cords. Most of the time still, I am having to lip read.
> I am doing very well. The good news makes things much easier. Outside of spending a night with Tricia every now and then, I get some very deep sleep at the hotel every night. My appetite is just as healthy (or unhealthy depending on how you look at it) as always.
> Both of our families are doing well, also. Tricia's mom has been up here for several weeks, and her dad and my parents bounce back and forth when they can. Siblings and cousins and grandparents, etc. have all been to visit and they are just as pleased as the rest of us with the progress of the girls.
> My email is down temporarily, so if you're trying to email me, give me a few days to respond
(A recent comment from My Dad)
One of the dynamics of blogging is that new people are coming into the story and have missed much of what has been posted earlier. Consequently many questions get repeated.
Nathan has done a great job of cataloging his posts by topic (see "labels" over there on the right side of your screen). He's been incredibly comprehensive. And it's in those earlier posts that most of the questions are answered, ie. breast milk; stuffed animals, etc.
So let me encourage newcomers especially to back track. Not only will it give you a bigger picture (and it's a wonderful picture at that), but chances are you'll find the answers to the questions we've all been asking.