I am trying not to get ahead of myself, but I am very nervous about taking home a newborn baby that is not completely healthy. He will still be on meds and we will have to give him a shot twice a day. The hospital will still provide us with a lot of education (how can we tell if his heart function is getting worse again, how to give a shot, infant CPR and much more), maybe a blood pressure cuff and lots of follow ups. He is considered stable now and they want to start the process of prepping him and us to go home. I am praying that he will not take any steps backwards, only forward. In my mind I was hoping that by the time we get to go home he will be completely healthy and normal, but that is not how it works.
Our lives have been turned upside down over the last few weeks and I know this has made me stronger and hopefully a better person overall, but it has been completely exhausting and stressful. I hate that I can't have my family of four all together. I have to always be away from one of my kids and that has been really hard. I feel guilty when I spend all day at the hospital and worry about Hannah (since I stay home with her I normally spend all my days with her). I feel guilty if I leave the hospital and worry about Evan. It is a constant struggle and makes me sick to my stomach. I know Hannah misses me and I miss her, but she has been a trooper through al of this. She acts out a little more often, but I do think that is probably normal in our situation.
Thank you again for the continued prayers and positive thoughts. We still need them. We are still praying for a full recovery and complete healing.
We got to see his precious face yesterday after all of the tubes were removed from his face