Monday, August 20, 2007
Sunday August 19 Current mood: satisfied
Sorry it has been so long. This is the first time I have been at home all week and I do not fight the thugs at LeBonheur to get on the computer anymore.
I am almost scared to blog because every time I do, something goes wrong it seems. Oh-well, if you are reading this, you care what is going on with my sweet sugar bear and I owe it to you guys to keep you informed
Macy Jane has been doing really, really, really well. She has been completely off of her oxygen since Thursday! This is the first time IN HER LIFE that she has not had a tube in her nose and tape on her face. She is 3 months old! We are simply overjoyed at her progress. She is being fed completely by her g-tube now and gaining weight. She now weighs 10 pounds 2 ounces. She was up to 10 pounds in the ICU, but A LOT of that was fluid. Her eyes were almost swollen shut.
She is losing her "baby hair". In a way it is good because I was wondering what I was going to do about her hair to even it up when she is a few months older, since one side was shaved and the other not. However, the other side is thinning out and they are about even. Funny thing is that she has all of the hair on the top of her head and at the back.......one of the nurses that loves MJ has called her "Macy Mohawk" for several weeks now and it is true.....from the side she looks like a rooster She is still as cute as ever. Smiles ALL of the time. She has finally started to smile for the doctors and nurses and they just melt when she does it.
I must say that the staff on 7-west is absolutely wonderful. (most of them ) Not only did they let us keep our room when MJ was in the ICU for a week, but they call us their family and MJ is the "floor baby". One of the nurses that has her every weekend during the day came back from Florida and she walked in to the room Saturday morning and gave me a really cute outfit for Macy Jane that says "Always a Princess". She said she saw it and thought of MJ immediately. That showed me that we were not just a room number, but that people do actually care!
So....what is the plan? Well, insurance has approved the $27,000 flight to SanFrancisco (that is only airport to airport........OUTRAGEOUS!) and they have approved the surgery and will cover it, PRAISE THE LORD! Hehe....until she reaches her lifetime maximum. We are just waiting on Dr. Hanley to give the okay for her to go to California. I am being patient becuase MJ is doing so well and I am enjoying spending time with her and *gasp* I even get to hold her now!!! Seems like we are always waiting on California, but in God's time is what I keep telling myself. We will go there when the time is perfect.
I am trying to think if I am leaving anything out. I don't think so.....I have a lot of new pictures that I will post sometime this week for everyone to see. I forgot the camera at the hospital tonight......oops.
Prayer requests: MJ to continue to do well and gain weight, her g-tube site is really inflammed right now (dressing wasn't changed for 4 days in the ICU.....and its supposed to be changed EVERY DAY.......that's a story for another blog) but is looking better, for Dr. Hanley (that he won't die or have a serious accident crushing his hands which would make him unable to do her surgery....hehe), for strength to keep going day to day. We have officially been at LeBonheur for 2 months straight now. ICK! I also have some unspokens as well.
I appreciate everyone your prayers! PLEASE keep them coming. Much love to you all!
p.s. OH YEAH! Please pray that I will start producing more milk again. There was a fiasco where my breast milk was either thrown away or stolen or a nurse just lied to me and told me I had plenty. I usually pump once a day or every other day just to keep it going and well......it is taking a while to get it going again. MJ is being fed a special formula right now until my milk supply increases....I am so sad about this because breast milk really is the best thing for her and I feel like I am depriving her of things that you just can't get out of formula. It will come back though, I talked with the lactation consultant at LeBonheur and started taking Fenugreek (an herb that tastes like maple syrup!) and I am pumping like crazy. Ah.....the joys of motherhood haha.