Thursday, June 28, 2007
Thursday Current mood: grateful
I got to see my sweet baby's eyes open! She has been paralyzed and heavily sedated since she has been in the PICU and today they turned off the paralyzing drug and turned down her sedation. I just happened to walk back there to give them my freshly pumped milk (which by the way, the supply is back up after a day of pumping every 2-3 hours--the supply/demand thing really is true) and her nurse had just started to turn everything off.
However, her eyes being open was short lived. She started to get agitated and fussy and that was causing her oxygen saturation to drop into the 60s so they inceased her sedation meds and started her on some pain medicine. Lauren, her nurse, is such a sweet girl. In a little bit she is going to let me hold Macy Jane! I am so excited. I have been sitting at her bedside in a rocking chair holding her hand and reading a book the past 2 days. I do not know what she can hear or sense but I try to talk to her and touch her so that she will know I am there if she can hear or sense it. It's amazing that when we are in there her oxygen levels go up. They are weaning her ventilator down, which is a good sign.
In other news, this morning I overslept--big time. I went to bed at 1:30am and set the alarm for 6:15 so that I could get up, shower, and then pump and get breakfast before I could go in to see MJ (visitation is closed from 0630-0730 and 1830-1930). Well, I woke up at 9am to the sound of mom looking for something in a bag. I couldn't believe it......doctors rounds start at 9 so I had mom (who was up and dressed, but wanted me to sleep so she didn't wake me) go in MJs room so that if they came by she could hear what they said etc.
I was about to get in the shower when she text me that Dr. Joshi (MJs cardiologist) was in the PICU. He did not come and see MJ yesterday so I was eager to talk with him. Needless to say I ran back there in my pj pants and he didn't even come to see Macy or talk to us! Instead, the cardiac intensivist, Dr. Cabrera, came in to talk with us. He was such a blessing from God. He explained many things to me and mom and discussed MJ's surgery. He was very optimistic that Dr. Hanley would agree to do MJ's surgery and that she could survive it etc. He does think that all of this was caused by MJ aspirating on her feeds eventhough her lungs do not show it. He said that the day she was admitted to the PICU he expected her lungs to look horrible and sound horrible--just based off of the vent settings that she was requiring, but that he was very shocked because the two do not match up. He explained that if it were her heart it wouldn't have caused this, this fast. Stenosis happens gradually over time and you gradually see things go wrong, not all in one day. I still am not 100% believing that she aspirated, but they are the doctor's who deal with heart babies all of the time and they know way more than I do or ever will know and I trust them.
So, not awesome news but it isn't all bad news either, thank the Lord. I can't wait to hold her, that in its self will mean so much. Steve had to work today and tomorrow so he can't be up here. I do not know what I will do when I have to go back to work. I really do not want to go, but I have no choice. I need to start back in the middle of July so that we can hopefully save some money to cover the basic bills while we are in California, but MJ is going to be in the hospital here for a long time. My mom is going to help out and stay with her while we are at work, but I will come up to the hospital when I get off and spend the nights I think. Maybe I can only work 2 days a week instead of 3. Who knows. I am taking it one day at a time. We do not have any credit card debt so if we have to put our house note and bills on one until things settle down and it is the right time for me to return to work then so be it. We originally planned to let me be off of work until September, but with surgery possible being in October I need to save some time off so that I do not have to take a personal leave and risk losing my position.
Anyways, lots of things to think about and pray about. I feel much better after getting some sleep last night. My outlook is a little better on the whole situation. Thank God for Dr. Cabrera because I was really starting to become discouraged and fretful. God sent him to us exactly when I needed to hear something positive.
Thanks for the prayers, keep them coming!!