Monday, November 3, 2008

'Amazing"

That is the only word I can think of to describe a number of things. One would be Juliana. She is the most amazing little girl I have ever laid eyes on (I may be a bit biased here). Two would be Children's Hospital Boston. Although I do struggle right now with the distance and have spent many nights (and days) in tears, she is in great hands. It's been one week since Juliana arrived at Children's and already miraculous things have happened. Juliana is back on the road to extubation (hopefully before she decides to take matters in her own hands). The nurses have been just wonderful. They are comforting and friendly and really try to understand our family situation. With little Omar at home and Juliana in the hospital I have really been torn between my two children this past week. Also financially, not going to work isn't really an option. I would love to just leave everything and be at her bedside 24/7, but that would mean that she wouldn't have a home to go back to when she is released, nor would she have insurance that has been gracious enough to cover her medical expenses without me chasing after them. Pulling her brother out of school also would not be very fair to him. We are doing the best we can to balance the needs of both of our children which has been very challenging with Juliana in the hospital. I am so grateful that I was able to gain some trust this weekend in the doctors and the nursing staff at Children's. Having that trust really makes it easier. I just pray that our stay will be short and sweet, but I don't want to get my hopes up to high. We still have many bridges to cross before she can come home.

This week we will have a sit down with the doctors and set a plan for Juliana's return home or to a hospital in Connecticut. I am more than willing to do whatever home care she may need and the doctors and nurses are well aware of this.
Well now for some pictures.



Breathing on our own (for just a minute).


Look at those beautiful bright eyes.
(A bit yellow but that's why we are here in Boston)



Taking a nap in our big girl crib



Content for the moment....

and angry the next.

1 comment:

  1. Hello,

    I am Emma's mom, born 11/4/07 weighing in at 1 lb 8oz and 13 1/2 inches long.

    We were at Children's Hospital in Milwaukee WI for almost 6 months and they were amazing! I am so glad that you are having a great experience in Boston.

    We were told when Emma was born that you can't just up and stop working to spend all of your time at the NICU(even though that is all you want to do).

    Especially when you have a litle guy(as we do, he was not even 1 year when Emma was born)

    As you said, Julianna won't have a home to come home to if you don't go back to work(they told us that too)

    It may take a while to find a good balance between work, home and visitng her, it will all come together. And as you said, it helps so much that you
    TRUST the hospital taking care of your beautiful girl.

    We will be praying for you!

    Jodi

    ReplyDelete

Juliana Maria was born on July 12, 2008. She is a micro preemie born at 1lb 2oz. 11-1/2 in 23 weeks and 4 days gestational age.