God is so good!

This little girl continues to amaze us all.  I just pray that she continues to have the strength to keep up with her progress.  Her feedings have been up'ed to 3.25 ML/3 hours and she is tolerating this well.  We were there tonight during her bath (I'll get to this) and when the nurse pulled back on her tube with the syringe she really got nothing back except what was in the tube itself.  This is great because it means she is digesting the breast milk!  Rob says she has his appetite too!  This was funny because she really does have his fingers, toes and nose.

She was on high flow air I think the last time I updated this.  She went down to 2L yesterday and then 1L at some point and now today since around lunch she is on NOTHING!!!!  She is breathing on her own now--PRAISE THE LORD!  I watch her breath and it looks like it would wear her out.  The nurses and our doctor promise us that they are more resilient than we could ever imagine.  With that said, she can always get tired and they will help her out with a little air if needed.

Her umbilical catheter started to clot off today while we were in there.  She was having some vascular spasms in her foot which is very common and it tells them its run its course. They had to put a picc line in which was inevitable eventually.  The nurse tonight said since catheter is gone they have to stick her foot to draw blood :(

Last night her nurse let me help change her diaper and check her temp.  After we were done, Rob and I were walking back to the room and I had a second wind.  I said I knew it was adrenaline from what I had just experienced.  It wasn't quite as scary as I thought it would be.  She told us to come back tonight around 8:30 and we could help with her bath.  We went and I wasn't prepared.  She has a bunch of sticker-like wires on her to monitor her breathing, heart beat, etc and she had to take them ALL off, including her feeding tube from her mouth.  Let me just say those little things are sticky and Ann Martin enjoyed no part of those things being pulled off of her.  The nurse had to use alcohol and force to pull them off and baby girl was screaming (whimpering like a puppy) her fool head off.  This mama did not handle it like a champ.  I lost it and I think I made the nurse feel really bad.  I just feel really helpless when she get so upset.  I pulled it together and returned for the bath.  She soaped her up good and got her clean.  We had to change her bedding and I got to hold her for the first time- in the isolate.  First time was in the blanket, second was my hands directly on her skin.  So surreal...have I mentioned how much we love this baby girl!  P.S. Rob has a little sinus infection and refuses to touch her which is best, so he is our photographer.

She is really doing great.  Her doctor came by to see us before we left the hospital today and would hardly talk about her progress.  Not sure if he was getting emotional or didn't want to jinx her.  He is truly an amazing person.

I don't like having my picture taken or being on video/TV.  However, I would be on a billboard, commercial, internet, whatever Baptist Hospital asked me to do to let everyone know how wonderful, compassionate, and accommodating they are.  I have never experienced anything like that place.  The people are some of the best!  And, just when we thought they could not get better...the head nurse came in last night and said, oh, by the way, Baptist has a program for cancer patients and maternal transport patients where they put you up in the Cabot Lodge for 4 nights on the hospital so you can stay closer to us.  Really... Needless to say, we are at the Cabot Lodge for the next 4 nights and then we will see what happens.

I will stop now, I got long winded.  Pictures!!

This was while she still had O2 on...so peaceful

She was sprawled out

That pacifier is TINY.  She takes it like a pro

She had to put her footprint on 5-6 pieces of paper and hated every second of it

Can you see the look of frustration on her face..."just leave me alone, please!"

First bath...hated it

my first time to hold her

such a sweet angel

It was one thing to hold her in the blanket, this was amazing

This is how we left her.  She did have her blanket over her eyes and her light on when we left.  Snoozing good.

Thank you Lord for this baby and the miracle that she is.