My sweet Lilah Grace has been in the NICU for 71 days. Today I got the phone call that I never thought I would get. Al called me from the hospital and after a big pow wow between the doctors and her Cardiologist team, they want to send her home. She won't be coming home fully recovered though. As of right now she is only taking about 20% of her feeds through a bottle. They will send her home with her NG tube and we will continue 1/2 feedings through tube and 1/2 through the bottle. She is also on 4 different medications for her heart which she takes several times daily. We would be able to give those through her tube also. They will also send her home with monitor for her vitals such as pulse etc. In order for this to happen we will need to stay at the hospital a few days with her so Al and I can learn how to replace her tube every 3 days and work the monitors etc. The doctors feels it is everyone's best interest for Lilah to come home and continue to grow. Since she is more alert now, she is so unhappy being in the NICU and is needing to be with us. As long as she continues to gain weight at home then we will still be looking at open heart surgery months from now. So we could have our two angels home for the holidays.
I never thought this day would come. 71 days in the NICU seems like an eternity. I do know that other babies are there so much longer, but this has been so long in the making. I had my daughters on September 10th and now into November we are still waiting to be a family like most normal people. It was taken from us because the girls came so early and now I want to make up every single missed second.
I will finally be able to take my long awaited maternity leave. Al also has a few weeks leave from work.
Please keep us in your thoughts and prayers. There is still a LONG road ahead with her surgery, but we are on the right track. Al will call insurance company in the morning to see if the at home services are covered and we will go from there.
Thanks again for all of you that have supported us through this crazy pregnancy....