Dr's and illness are often frustrating things. I am finding myself frustrated and upset and somuch more right now. I'm frustrated with how we are told one thing, and then later it's not the same. I'm not a dr, just a mom so alot of things might be a little lost on me. When we first got here, we were told her right lung was pretty close to a normal size, and that she does have a left lung but it was very under developed. To me that sounded somewhat promising. I also believed that since we didnt even know she was sick, and I held her for a good 5 minutes (which isnt terribly long, but if you can't breathe I think it's a pretty good stretch) and then they checked her out for awhile, and she wasnt on a breathing tube or vent for a good hour and she survived that that should be good things. Well today they said that even though her right lung is a good size, it's not a "normal" lung and that they didnt see much left lung. And that it doesnt really matter how big the right side is, it matters how well it will function. I was under the impression that her right lung was good, I don't know if I just missed it at some point or if I chose not to hear or believe or if Im just that naieve but I thought her right lung wasn't really a concern, and that even if her left lung was barely there, you can live with just the one. You can live with one, but it has to be "normal". I KNOW that truly they can say all this and that they can have all their statistics and all thier numbers and comparrisons and all their science and none of it can matter, I know she can make it and God can bring her through and all can be just fine but it is so difficult to hear that perhaps it's not nearly as promising as you had thought.
I'm also upset and frustrated that yesterday when they bronched her they said she did fine. Right before they did it, I was holding her hand and she was squeezing it and then they turned the lights up and she squeezed and closed her eyes more tightly, and I said I didn't think she was completely paralyzed and they assured me that she was going to be comfortable and that she was not going to feel anything and not be stressed and not be uncomfortable at all. Well this morning during the nurses shift change, the night nurse was telling the day nurse about her Atavan and morphine and how they have basically been pushing it regularly and if you don't stay on top of it, she is going to be very unhappy and that during her bronch and chest tube yesterday she was very unhappy and they had a very hard time keeping her calm. That was so upsetting to hear, because when she is "unhappy" her face is crying, but she isnt making any noise and isnt having tears, she just has this silent scream going on and it is the hardest thing to see, and not be able to do anything about. I am perhaps just a little overzealous with my kids, when one of my babies cries, they don't cry for long at all. You cry, you get picked up, changed, cuddled, nursed, comforted and I can't do anything at all but hold her hand and talk to her.
She does have some good things going on today, her chest is clearing of fluid and she is not requiring blood like she was and she is responding the way they would have liked from the chest tube. Please pray that her lungs begin to function and that she can come off ECMO and begin to move forward.
Alot of friends and family have said they know someone, or konw someone who knows someone that has CDH or a child with CDH and have asked if I minded my contact being given out. Our lives became a completely open book on March 27th, so please by all means direct them here, or facebook or let them call or text, or email. I don't care, I would imagine any encouragment would be a good thing. Also, if youve called or texted or emailed or facebooked and havent recieved a response, please just konw we are not purposeful with not responding and that every kind word and gesture we have recieved was not lost, we have appreciated everyone's amazing kindness. we are overwhealmed with the amount of love and care that has been shown. Please continue to pray for our sweet sweet Grace.