Monday, March 16, 2009

Update with Pictures (Finally!)

Juliana is doing fantastic. She finally got her synagis shot after weeks of phone calls to the doctors office, insurance company, and the pharmacy. Her pediatrician finally received the novel of medical records from both hospitals and it seems like everything is falling into place. Her pediatrician and the nurses there really understand what it means to be a micro preemie and offered us VIP treatment at our last visit. I was really worried about bringing her into the waiting room with all of the sick germs floating around. She was 2 weeks late for her shot and I didn't want to chance anything. They offered to let us in through the back door and put us right into a room when we got there. No waiting room but still lots of waiting (not uncommon). She got her shot, a set of vitals, weight and height check and we were on our way. I was very happy about her weight she grew about 5 ounces in a week and is now 8lbs 12 oz. She has been tolerating the increased oral feeds so far and I am hoping that we may be able to increase her rate on the continuous pump feeds. We will see what happens at our next clinic visit on the 26th.
She also has a pulmonolgy visit next month but I am hoping that we can make it sooner. I have been testing her by turning the oxygen off for a little while to see how she does. At this very moment she has been off the oxygen for almost thirty minutes and hasn't dropped below 95%. When I first turned it off she was sleeping. About five minutes ago she woke up and her saturation level hasn't dropped below 97%. I am very hopeful that we can get her off the oxygen very soon. I know that with her off oxygen that her surgeon will also be ready to go in and put her back together. This is something I am looking forward to but at the same time I am afraid to put her through surgery again. Life with Juliana is unpredictable and I don't know that everything will go according to plan with this surgery. All I can do right now is enjoy the time we do have together and hope that all will go well.

Here is Juliana in her swing and big brother, Omar, on binky patrol.

Daddy and Juliana cuddling on the couch for the first time on the day she came home from the hospital. I love her homecoming dress.

Hanging out with Mommy

Juliana's favorite activity.... starring at her hands.

Sunday, March 8, 2009

Still at home but not for long...

Juliana is doing fantastic at home. She actually grew about half a pound in the last week. She enjoys her physical therapy each week and overall is just amazing. She is spending more time awake and socializing. She went to the eye doctor last Thursday and all seems stable for her right eye which is our only hope right now as the left retina is completely detatched. We have really adjusted to life with her home, but it will all be changing when she goes in for surgery. The last time we spoke with her surgeon he felt that she would be ready for surgery in April. With the way she has been progressing I think he is probably right.

As much as she needs to have this surgery to get her gut back to normal (or close to normal), I am dreading having to go back to the hospital and deal with all the after effects of surgery. The all over swelling from anesthesia, the pain meds that make her drowsy, waiting for the stitches to heal, starting feeds all over again, dealing with nurses who think they know my child better than I do, etc. I just can't get it out of my mind. I just wish we could fast forward from the time of her surgery til the day she is discharged. I am just going to be an emotional wreck during that whole time.
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.