Our family meeting

The picture below was taken before she got her blood. You can see how pale she is.

Hello,

Well Emily is doing slightly better yesterday. She is stating well most of the time. However she is on 100% oxygen through the canula and through the oxihood. They have increased her inhaled steroids and if they work, they expect to see it happen by early next week.

Now the family meeting. We were told again that her lungs are barely functional. She has very little “reserve” and so minor things seem like big things in her. The doctor even said that she is the kind of baby that you see a few times in your career, rather then a couple of times a year. She is hoping the inhaled steroids will work with her since she can be released with those. However if they don’t they may have to give her a oral steroid again. To me this means that she is going to be in the hospital for even longer since she will do well for a while and then she may rebound from it. They may also try her on one other drug that the pulmanologist recommended. Her renal ultrasound looked good but they are seeing the effects of the lasix (a diarill) on her kidneys. They are getting calcification I think.

They have moved the “milk scan” back to next week if they do it at all. She said that there is reason to think that she doesn’t have any reflux (or very minor) and that what they are seeing is just that her lungs are in bad shape. She is also getting an EKG to check her heart to make sure it is growing correctly since sometimes they see the heart grow wrong in babies with bad lung disease. (The heart has to work harder to get blood through the lungs so that side gets bigger then the other side that just pushes it through the body.)

As far as when she will go home it is really not looking good for Christmas. She said that if she were to guess it would be months not weeks that we are looking at for going home. There is even a possibility of being transferred to a rehab center. I think that they will make that decision towards the end of the month though. The good news is they are talking about an end game. She is going to go home as oppose to the last family meeting when even that was questionable. Her requirements for going home are she has to be taking every feed by bottle, she has to not desat as much as she does (and we have got used to), her flow on the canula needs to be less then 1 liter per minute (currently at 2), and she has to show signs of having some reserve as far as lung function. These are a lot for her to overcome in a short period of time.

Tony and I at this point are thinking about postponing our Christmas this year. We can’t imagine a Christmas without Emily and regardless of how hard we really try we are not going to be able to spend that much time with her on Christmas. Our new goal for her coming home is Tony’s birthday of February 25. Ironically this is the one year date of the IUI that helped create her. We have decided that we would take the 25th of whatever month she comes home and call that Christmas. I just hope it isn’t in Lent. I am going to let her have a picture taken with Santa though. The hospital offers that. I am hoping they will even let her be in her Christmas dress that I got her. I am also thinking of taking a “family portrait” while she is in the hospital. I figure this would be simple enough when she is having a “good day”. After all we have 3 cameras that we bring everyday. Surely we would be able to get a good one with that. I might have to do it a day that she has a lot of people she knows working though since she may not want to look at the camera otherwise.

The thing I am most sad about is her not seeing snow when it snows this winter. Not that I want her playing around in it or even going out in it. The windows in the ICN are really far back behind all of the counter and electrical stuff. So even if we can see it snow she wouldn’t be able to see that far. I have asked one of the nurses and they told me that they do have portable oxygen tanks that I can take her to another window in the ICN that she could see the snow. Though this would only be if she were having a good day since she would be off her monitors for a minute. On that note also I am planning on packing a small bag for the car should it unexpectedly snow more then is safe for us to get home in. I don’t want to be stuck at home during a Nor’easter (a really large snow storm, like the one when I got married for those of you that were there. That was a Nor’easter in the truest sense of the word). I would rather be at the hospital in that case.

My goal for the remainder of the time that Emily is in the hospital is make it feel as much like home as possible, for her and for us. I don’t know what more I can do but if I think of something I will do it.

That is all I have for now.

Jennifer