Its the little things

It has been quite a topsy turvy couple of days. I won't go into all the details. The long and short is that we are back fully on breast feeding with some bottle feeding as needed - mostly when
I need a break. Bronwyn doesn't have a lot of stamina so she eats a little often. So if I don't get a bit of help I just never sleep. But she is get stronger and is eating for slightly longer times - so hopefully she will start to sleep a bit longer too. She occasionally sleeps for a couple hours so that is a good sign. She hasn't gained weight yet - but the good news is she hasn't lost. And the big worry of fluids (not enough pee) seems to be less of an issue. She is passing urine and pooping quite well.

What a girl eh?

Lately it is the little things that are making my life so much nicer. The night before last I had a nurse who felt it was important to let Bronwyn lead the way and not wake her every three hours to eat whether she wanted to or not. And when the bolos feeds made her spit up because she had too much in her tummy - she discontinued them and did them less frequently. She even went and got a warm blanket to cover Bronwyn and me while I was feeding her. So nice!

Just when I thought a nurse couldn't be any nicer - well... Last night I was dreading the coming night as Bronwyn's new roommate was a little newborn with jaundice. So they had a bed with the bright lights - which was really bright. And every time they put him in for his tanning time he cried and cried and cried. Now of course I can't blame him - I wouldn't like it either - but I was thinking between Bronwyn's eating every hour and a really bright light and a crying neighbor - well I didn't expect to get any sleep at all. Then the nurse came in and asked if I'd like to be moved to a private room - well would I!! She said for the morning - but came back in a minute and said that they could move us right away. The same nurse also convinced me to let her bottle feed Bronwyn a couple times in the night. As a result I had about 6 hours uninterrupted sleep. What an amazing thing!

I am writing from the condo not the hospital and I have with me - Wes, Gavin and Bronwyn. Yes Bronwyn. She is out on a day pass. Pretty exciting eh?

Gavin is terrorizing his daddy and baby sister at the moment. He is trying to give her some ice. We have to take her back by 8pm ish. It is a nice way for me to start getting comfortable with having her at home full time. We have been warned that although she is doing well and they think she will fair well until the next surgery that she could drop dead with very little warning. We are being taught to look for early symptoms of heart failure and we will have an oxygen monitor and a weigh scale to bring home to monitor her daily. We also have about 6 medications that she has to be given several times daily. Do I think she will die before the next surgery? No! I believe that God will care for us and keep us all safe. But I need to be very aware of her status and be ready to react at any moment.

So while it is terrifying having her away from competent medical care, it feel so nice to have my family all together out of the hospital. Wow! What a feeling!

Thank you all for you continued prayers and thoughts we are so thankful for the great support we have received. There is a great swell of love and support that laps over our little family and I assure you we are greatly encouraged by it.

Love you all!