After one month of stay at hospitals we are back at home. I am so thankful that I could bring my baby back home. Now each day with her is a blessing for me. I am so grateful to God for selecting me to be Anna's mom. She is such a precious baby. Seeing her smiling melts my heart. She is doing better now.
Now she has a gtube, so at least that way I can improve her nutrition. Now the concern is the airway. Before we knew that she has problem with her airway, but now we know that her airway is this critical. But we are just holding our faith on Jesus and believes she will be okey. I don't want to put her through more pain by doing any treatment that does not promise a brightful and pain free life for my baby.We want her to be happy. If we feel like if there is any treatment that promises us that she will be okey, we will go for it. She went through a lot for one month. Three central lines, two on each side of her neck, one on her diaper area. She lost lot of skin on one side of her neck and diaper area from the tapes they used to secure the central line in the first hospital, blood infection, blood transfusion, a gtube surgery, being intubated etc .... After all the things went through with her, she was not talking anything until two days back. She was not even showing any expression. Was startling in her sleep and was not able to sleep continuously also while she was in hospital. By God's grace she is back to her norm, she started to talk and play now and sleep too. Before going to hospital she liked walking. (cruising along the couch). But now she can only stand for 1 min, aftermath of being in hospital bed for one month. Hope she will slowly pick it up.
I would like to note that she didn't get any skin damage or any harm from her hospital stay at Cincinatti. If you plan to do any surgery on a baby with EB, I would recommend taking them there. There is nothing you have to worry. Afterall seeing people who knows about EB is wonderful. The nurses in PICU there are just awesome.
This past one month is like a new life for us also. Was able to feel the love and support of many people. We got so many new friends who cares for us. And it was also a chance to spread awareness about EB. This Christmas is a special christmas for us. The best gift we could ever get, getting our baby back. To see her talking again, to see her smile again, to see her playing again. Thank you all for praying for her. This is the best gift ever.
You all have a Merry Christmas!!!!!!!