Feeding and feeding

     We have been back in the NICU for almost two weeks now. Breckin did so well after surgery that she no longer needed to be in the cardiovascular ICU. She has been doing so great since her heart surgery. Her respirations are so much better now-she breathes maybe 30-40 times per minute instead of 80-100. Sine being back in the NICU, we have mainly just been working on feeding by mouth. Because of her cleft palate and her heart defect, she has difficulty taking her full volume by mouth. She also was aspirating on her milk after her surgery. This means that the breast milk was going down her trachea to her lungs, which was why she would just give up eating after a few swallows. Our speech therapist is the one who saw the signs of this and ordered what is called a modified barium swallow. During this test, it showed that she aspirated on the breast milk in her bottle. So, a thickener called nectar was added, and this solved the problem.
     Since the swallow study, we have been feeding her with the thickened breastmilk. We are also adding fortifier to the milk to give her extra calories. As of today, she has surpassed her birth weight by a few ounces so she is back to gaining weight. We have been working on giving her as much volume by mouth as she will take. She was eating every three hours and it didn't seem like she was getting hungry enough, so we changed it to every four hours and that seems to have helped a little. She is now taking about 40-45cc pretty consistently by mouth. This is about 1 1/2 ounces. Her goal is to take 70cc by mouth every 4 hours or 60cc by mouth every three hours. We have come a long way, but I still feel like we have a long way to go.
     We have had so many great nurses here who have truly loved on our baby, and for that we are so grateful. However, because so many different nurses rotate through, I feel like there is some inconsistency. Every nurse has their own way of doing things and their own way of feeding Breckin. When Josh and I are here, we will feed her, but through the night, we let the nurses feed her. I feel like this is when she loses ground. It is just very frustrating being here day in and day out knowing the only thing keeping us from going home is her eating. I know that she will eventually get there, but I'm afraid it could take several more weeks for that to happen.
     We have recently been considering the idea of getting a gastrostomy tube or G-tube. This is a feeding tube that goes directly into her stomach. We can still do what we're doing now-offering her milk by mouth and then give the rest in her tube. However, we can go home with the G-tube and continue to work with Breckin at home. The G-tube is a simple procedure, but it is another surgery that Breckin would have to undergo. This is my only hesitation with going ahead with this. I hate to put my baby through another surgery where she will undergo general anesthesia, but I feel that Josh and I can make more progress with her at home.
     I have seen God working so much in Breckin's life, and I am just ready to get her home to actually start living life with her. We are so blessed with her and she is such a joy in our lives already. I know we have a long road ahead of us filled with many more doctor's visits, surgeries, therapy, and challenges down the way. However, I know that God is going to be with us through it all. I never thought I would make it past that first week here. I thought I would lose all hope, but my hope is continuing to be renewed each day that we spend with our baby girl.

 Christmas Eve

 Doing some feeding with her big sister and the speech therapist

Snuggle time with mommy