Waiting game

Well, we continue to make progress but I have found that we are truly in a waiting game and we are not in charge!  She is weighing in at 4 lb 13 oz today.  She has been on a steady weight gain while gaining too much some days ( I will explain that).  She had gotten up to 40 ML a feeding but has been cut back to 38 ML a feeding recently.  She continues to take bottles when she is awake.  They were only giving her 2 in 24 hours but now she can try and take one every time she is awake for care times.  So today since 7am she has taken 3 bottles as of 5:30 this afternoon.  I am getting better at feeding them to her.

Some days recently she has gained 3-4 ounces in a day.  They did a chest xray Monday and she showed some fluid in her right lung.  They did 3 days of breathing treatments and repeated the chest xray on Wednesday and it looked much better.  The fluid makes it hard for her to breath limiting the bottle intake and requiring her to continue to need oxygen.  She still looks puffy so that is why they lowered her ML on feedings.  They were worried that she was getting fluid overload.

I always assumed her weight would be the thing that kept us there.  No, no, no...getting her off oxygen and taking all of her bottles will be what keeps us there.  Yes, she can come home on oxygen but I get the feeling they expect her to not need that.  So we are attempting to be patient ;) and remember that it will all come together in God's perfect timing.  After all, he has gotten us this far and look how well we are doing!  We are so close and I find myself imagining what it will be like to sit at home at night, watching t.v., and holding her.  Kissing her forehead while I rock her to sleep...those moments I know I would have taken for granted had we not been through this.

I sometimes feel guilty being back at work while she is over there.  I have to keep telling myself this is so I can be home with her when she comes home...I must tell myself that 100 times a day.  She will open her eyes when I talk to her now and that makes me think she recognizes my voice...even though I am not there as often as I would like, maybe she still knows who I am.

Thank you all for continued prayers! We love each and every one of yall!

This is her new room

Another view of her room

They all have these boards to communicate what she has going on

Look at those chubby cheeks
{Don't know where she gets the chin dimple}

Cuddling

She likes her new bed

Snuggling this weekend