Morgan Day 5

 Morgan is 5 days old today. She has had a busy life thus far and the unfortunate truth is it will probably only get busier for her in the weeks and months to follow.

As for the update on how she is doing, today was a relatively quiet day for her. Probably the most relaxing day for her so far as there were no new pokes or prods. They did have to adjust her pick line (that is the IV that they put in her that goes from the crease of her elbow into her chest.) Thankfully it was relatively easy procedure for her and she didn't protest to much.

Morgan is very sensitive to noise and touch and when she gets to roused her lungs clamp down and she has a hard time getting oxygen into her blood. They have to up her oxygen levels and then slowly bring her back down as she relaxes. This makes it quite difficult for the doctors and nurses to do the things that they need to but they have been doing an awesome job with it. It also makes it difficult for Casey and I as we can't really be overly touchy feely with her, which please believe me, we really want to be but right now just cant. :( We do give her soft kisses and whisper to her how great she's doing, how proud we are of her and how much we and everyone else loves and cares for her.

 They are still working on her blood pressure as well and have actually started a new medicine today that she gets on top of the one that she was already receiving. It hasn't helped as much as they would like but they still have a few more options if it continues on this path.

Some good news though, they have started to back her off on her nitrous oxide levels that she has been receiving. The mix nitrous with her oxygen and it helps keep the blood vessels in her lungs open so that they can receive the oxygen that they need to. She has been at 20 ppm and she is now down to 5 ppm which is good, she hasn't seemed to struggle without it and actually has seemingly been doing a bit better with it. The doctors did advise though that we probably wouldn't see any major changes with her until the dropped her down below 5 so they are going to start slowly dropping 1ppm at a time now and see how she does.

She also received some new medicine that they are hoping will help her kidneys process more fluid. She has not been putting out nearly enough and is actually putting out less liquid then she intakes which makes things very difficult for her seeing as how they are already giving her the least amount of fluids as possible. She was up to 42ml of urine in the past 24 hours which is great on where she started at (11ml) but unfortunately its still not enough. The medicine did seem to do some good though because shortly after they gave it to her she produced 9ml within the next hour which was an improvement.

As for Casey and myself we are doing well. Its hard and stressful but we both agree that we will be bringing her home in the next few months. The told us we would be here anywhere from 3 weeks to
2 1/2 months so we are hoping to be home with her in time for Christmas. Are days are relatively busy, we are at the hospital before 7 every morning, that is when the nurses do a shift change and we like to hear from the night nurse how things went. The doctors make rounds at around 9, so we like to be there to hear what they have to say and what their plans are for the day with her. Then it's a lot of waiting. We hang out in the waiting room all day and check on her frequently. We don't like to stay in her room all day because we are worried that we may stress her more then she needs to be and it also lets the staff do what they need to without some overprotective parents giving them the ole hawk eye.

 As I'm sure you can all imagine this is a hard time for Casey and I. To see our child go through this is unimaginable. We struggle with being in limbo right now. They are waiting to see how she will do on her own without any sort of major surgery or actions and it's tough. We just like to focus on her improvements everyday no matter how small they may seem they are huge to us. We had no idea that this was coming and even if we had, there is no way to prepare ones self for it. The doctors are trying to put together some plans for what may or may not happen. We haven't heard much report back on that but once we do we will be sure to let everyone know.

We appreciate everyone's concerns and comments, they mean more to us then any of you will ever know. When we checked her blog last night there had been over 500 views to her page and that amount of support is awesome and amazing. Please keep sending your thoughts and prayers, she needs all she can get right now. I hear that people are having a hard time leaving them and I believe that you have to sign up to google + to leave them so feel free to do that if you'd like. It's simple and there are no costs to do so.

Also there is a blog that Casey and I have read of a little boy named Parker. I believe he is around 3 years old now, and it is a great story. He was born with the same condition as Morgan and it was great to see it all turn out so well. It gives us great hope. It has also given us a little insight into what is in store for us in the years to come. The ups, the downs, the joy and the pain. I have attached a link for anyone interested in reading it.

Once again thank you to everyone, we will update again tomorrow