Our first night with little Haley at home was a sleepless one, but we didn't care because we were so excited to have her with us in her own home. Haley has truly blessed our home thus far. She has such a beautiful spirit about her. She is such a beautiful little girl, we love and cherish her so very much. She has brought the spirit into our home more fully. She is such a peaceful little thing. Haley slept fine from about 4pm yesterday until 4 am this morning. So yes we have had a lack of sleep, but that is ok it was worth every minute of it. Haley is being fed by a feeding pump through her nose into her tummy. She will have to be on this until she can complete a full bottle by mouth on her own. She is having a difficult time with it, but has made some improvement in that area. We hope she masters the art of bottle feeding soon. She is being fed every 3 hours over an hour by the pump. It feels like we are constantly feeding her. It will be tough to keep her on her feeding schedule when she will be out seeing doctors. Haley will have many doctors appointments with many different specialists within the next two to three weeks. She continues forward and we hope her progress will look up and not back.
Haley at home in her bed
Our sweet Rachel is doing really well since her surgery on Wednesday. She seems to be so much more relaxed since Dr. Bloss placed the gtube/fundo. Her reflux must not be bothering her nearly as bad a it was. Rachel decided she was tired of being intubated, so early this morning she pulled her IV and she exacerbated herself. She is now back on her nasal cannula and is fighting on. We hope more than anything else that this surgery will help her to come home sooner than later. We long for the day to make our family complete at home. I know that Haley is waiting patiently for her sister to get home. I think Haley and Rachel will be the best of friends one day. I know that the good Lord has watched over and blessed both our girls, and it is our prayer that he will continue to protect our beautiful children.