We are all home and trying to get into some sort of schedule. I’m sure all of you moms and dads out there are laughing hysterically at that sentence. As we have been told, and have now found out first hand — babies do not understand or care about schedules. Regardless, we are trying!
Home Care Nurse
One of the things the doctors prescribed to us at discharge from the hospital was a home health nurse to come by weekly. She takes monitors Reiss’s oxygen saturation levels, heart rate, listens to her heart and belly, and weighs her. The last time she was here, which was Sunday, Reiss weighed 7 lbs, 7 ozs. We are back to our birth weight! Hooray!
We had two doctor visits last week. One with the pediatrician and one with the cardiologist. Both were very happy with where she is health and growth wise, considering her age and situation. We will see the pediatrican again in two weeks and the cardiologist in three.
While at home, Reiss is constantly hooked up to a monitor that reads her oxygen saturation levels and heart rate. Her oxygen saturation levels tend to be in the high 80’s, but can dip into the 70’s if she is upset. Therefore, we try to not let her get too upset for any amount of time. FYI – For those who do not have any heart issues, oxygen saturation levels will stay in the 90’s, but for Reiss, 80’s is her “normal”. If between now and 6 months (when doctors would like to do the complete repair) her oxygen saturation levels trend in the 70’s, it is possible that we could have to go back to St. Louis for another catheter procedure to widen the stent. This would buy her more time to grow in preparation for the complete repair. It is common to have to do this type of procedure again, according to doctors, and usually is needed around 3 months of life.
Another thing we are to be aware of as the winter months get closer is sickness. Doctors recommend limiting visitors and to not take Reiss where she may get sick. Any type of sickness will be harder on her with her condition. Therefore, Reiss and I will not be venturing out much.
We appreciate all the help we have recieved from neighbors, family, friends, co-workers, students and parents. It has been almost overwhelming the support we have received. Thank you all!
Sara, Roy, Reiss