Christmas Eve

We are finally home! Got the okay to come home Thursday. It was nice being in Houston with family but it feels good to be home. Especially nice to be back with our fur babies. We have many doctors appointments ahead of us. The genetics work up was not complete however they believe she meets the criteria for goldenhar syndrome. The syndrome varies greatly from child to child. She has anotia (missing ears), congenital heart disease and some other bone abnormalities discovered on imaging. It is a rare syndrome and so it is difficult to know what to expect. We will just have to take it one day at a time. For more information on the syndrome this is a good source: http://www.goldenhar.org.uk/what-is-goldenhar/

We will follow cardio in Austin and have a follow up appointment in Houston in March. We hope and pray the pulmonary band will get her to 6 or 9 months so that we can repair her heart with a double ventricle repair. She is still struggling to finish her bottles. We will have to have a g tube placed if she cannot finish 80% of her bottles in two weeks. We currently still have NG tube placed and we are feeding her what she doesn't finish in the tube. We had the hurdle of the over concentrated food and although her stomach issues have improved they are still present. We will try changing the formula. Hopefully once her stomach issues completely resolve she will be more eager to complete the bottle. We have an ENT appointment scheduled for late January.  We will discuss hearing devices. Hearing screening in the hospital was incunclusive on the right ear however no activity on the left.

Angelica is very alert. She is a normal 6 week baby. She loves to look around at her surroundings. She is a very happy baby and would sleep through the night if we let her. She is cooing and smiling. We are so blessed she has joined our family.