Sorry it has been a while since we posted. Emily is doing well. She had a really good day on Saturday and was awake for most of the time that we were there. On Sunday she had a bad day though and was desating a lot. She looked pale to me and they ran a blood test and she was anemic. So she got blood and a diarill. She looked better afterwords (yesterday) but she is still desating. Not bad (into the high 80’s low 90’s) but still desating. She stopped her inhaled steroid, because we didn’t think it was doing anything for her and now we are all wondering if it really was doing something for her.
The occupational therapist saw her on Saturday and was shocked by her. She started showing off all of her tricks. She said that Emily is developmentally around 2 months of age. That was good news to hear!!
I started the ball rolling (or maybe I gave it a good hard push) on getting a high flow cannula at home for her. There used to be a one type but the FDA recalled it. Now Emily is on a second type but it is new and not very many home care companies have it or can deal with the high flow systems. The respiratory people were looking into it with no avail so I e-mailed the company directly (that makes the heater for the cannula) and told respiratory I did so. I guess now the rep for the company that they are leasing this system from (just for Emily) was there yesterday and she is looking into it for us. I just don’t want to be in a situation where she is ready to go home except she is on a high flow rate that we can’t accommodate, because we haven’t done the research. I guess it pays to be the squeaky wheel sometimes!
That is about all that is going on now. Emily is going to be supplemented with Formula soon (maybe even today) but I am now not worried about my milk supply. I know that pumps are only marginally effective and Emily can draw more from me then a pump can. I think I am just going to do my best and hopefully when she comes home then Emily can get what she needs from me. I may have to rent a scale though just to be sure though.
Talk to you all later!
Jennifer
She looks great! So precious with her big eyes. I hope you get some good news about possibly using the high flow cannula at home. And I think you have a great attitude about your milk supply. You seem to have done an awesome job pumping so much for her.
Emily,
You look so cute today. Daddy tells us you have been having a rough time. You have to stop that so you can come home soon. Your Uncle Steven thinks you look cute for a baby.
Love,
Grandma