October 6, 2008 5:15 pm (101 days in the hospital)

We've graduated to a "big tub"!

Good afternoon! Laurie and I are spending another day waiting on the ophthalmologist! He put in an order for her eyes to be dilated at 10:30 am and stated that he would be here within the hour, but it is now 3:30 pm! Lots of you ask what I do all day and this is it…sit and wait!!! Laurie did gain some more ounces over the weekend and now weighs 5 lbs. 10 oz. Her nurse practitioner has changed her oxygen setting today to .1 liter @ 100%. These are the settings that we will have to be on when we go home. This will give us a few days to see how Laurie adjusts to the new settings.

Many of you have been asking about when we will be bringing Laurie home and I have mentioned this possibility in a few posts. This is a complex question for the doctors and for us! Other than still requiring oxygen to help her breathe, Laurie has met all the other criteria for discharge (she is in an open crib, continuing to gain weight, taking all her feeds with a bottle). In most cases like Laurie’s the doctors, would just discharge the baby with oxygen, follow up with a pulmonary doctor, and eventually discontinue the oxygen support when no longer needed. However, when a baby is discharged on oxygen, the oxygen percentage must be set at 100%. There is no way of controlling the percentage of oxygen being given. Yet, with Laurie’s ROP eye condition we are trying to minimize the amount of oxygen she receives in hopes that the oxygen will not further harm her eyes. We have been trying for the last week to wean Laurie’s oxygen percentage, but she seems to be “stuck” at 30% on 1 liter. Although Todd and I are eager to bring Laurie home we must do what is best for Laurie’s health. Also, coming home with oxygen will require much more attention, which could be extremely difficult for a five year old who has not had his mother at home for three months. Having said all of this, there is no way to predict how long it could take Laurie to come off the oxygen and we cannot stay in Birmingham indefinitely!

I realize it would seem that bringing Laurie home would be an easy decision; however it is also very complicated. After three months of becoming dependent on watching monitors and having nurses and doctors who can be at Laurie’s bedside at a moments notice, it is very difficult to let go of that security. The thought of traveling three hours home with Laurie sitting in a car seat is worrisome enough. Todd and I have already decided that once discharged we will stay at the UAB townhouse with Laurie a few days in order to be close to the hospital. We are looking at coming home this weekend or at the first of the next week!!!!

Once at home, Laurie and I will continue to be on “lock down” until at least spring. After being in a sterile, hospital environment all of her life, Laurie will be very susceptible to germs and infections. This is especially troublesome since Laurie will be coming home at the beginning of the cold/flu season. Laurie has already had her first synagis shot to help prevent RSV. Respiratory Syncytial Virus (RSV) is a virus that causes a severe chest cold and wheezing. It can be detrimental to preemies! Therefore, we will have to be extremely cautious with Laurie once at home. She will continue to have a RSV shot once monthly from now until April. Although we are ready to be able to “show off” our little miracle, it will be several months before we can get her out. We will also have to limit guests coming into the house in order to decrease the likelihood of infections. As you can imagine this is also very scary with Cole bringing in germs from school. But, he has already learned the importance of scrubbing when entering the NICU. Todd did not even come into the nursery on Sunday due to having a sinus infection! The doctors have also advised that Todd and Cole change clothes and scrub immediately when getting home before touching Laurie. So, although we will be home, our lives will not be back to “normal” (we’re not even sure what that means at this point).

You all have been so supportive during this long and challenging ordeal. Your prayers have sustained us and helped Laurie get to the point of coming home! We are so thankful! Since we will not be able to get out once at home, I will continue to update the blog with Laurie’s progress and pictures. I’m sure that I will not be able to do this everyday, but will try to post 2-3 times a week. Thanks for continuing to check in on Laurie and please continue to pray as we take the next step of this long journey!

Love to all!
Todd, Leah, Cole, and Laurie