Update and pics

I'm finally posting more pictures! Sorry it has taken so long:) Amarie is doing really well. At her last doctor's appointment a few weeks ago, she weighed 7 pounds 5 ounces (she was 5#1 oz at birth so she's getting bigger!). She went for a follow up at the craniofacial doctor last week and they took out the stitches in her jaw (she still has her pins in...we thought that they would take those out but they will do that next week). She will also see the hematologist next week and the neurologist the week after that to follow up about the blood clot and brain bleeding. We will also see the ear nose throat doctor...we are very curious about her hearing.
Life has been very crazy the last few weeks! Besides adjusting to the normal newborn stuff, we are adjusting to her tube feedings, medications, equipment, and lots of doctors appointments and paperwork. She gets her feedings through the tube in her nose every three hours. By the time you warm up her milk, set up the pump, let it run for 1 1/2 hours, flush it, and then wash the bottles and syringes, it is time for the next round! I had been pumping but stopped last week. I really struggled with that decision because I really had my heart set on nursing but I just could not keep up with pumping and the tube feedings. I had no time to enjoy Amarie. It has been better to take one thing off of the load but is still disappointing to let go of the hope of breastfeeding. I am trying to focus on what I did accomplish by pumping for 6 weeks in the midst of crazy hospital life and to be encouraged by the freezer full of milk I still have.
She goes for a swallow study this Friday. She is allowed to have a 5mL snack from the bottle everyday but she has trouble with this and gets gagged. If she does not pass her swallow study she will get a tube put into her stomach instead of the one in her nose. While we are not looking forward to another surgery and hospital stay, it will be better to have a more permanent tube since she figured out how to pull her NG tube out! The other day I was up doing one of her night feedings and I thought that I was starting to get the hang of things...then she pulled out her tube and the dog got sick all over the carpet! You just have to laugh.