This from Paulina:

Taking care of my ill baby has been the most challenging job I have ever had and I will ever have too. My son was born with a primary immunodeficiency which was a big surprise for all the family and a long journey to find it and treat it the right way.
Being a first time mother I felt overwhelmed because of the big responsibility and everything I read in books about babies was totally different or was not happening the same way like running a high fever twenty four hours after birth due to a life threatening infection or having to be with him in the intensive care unit instead of being at home and the umbilical cord that didn’t fall off by its own, or a diarrhea that gets out of control. It was all very overwhelming.
All the other parents that took baby classes with us left the hospital three days after delivery and we were still there after four weeks with our child at the intensive care unit hoping deep inside that another baby like ours would come to be with him and to be able to talk to other parents going through the same thing but it didn’t happen that way. It seemed that we didn’t have the right to enjoy our baby. We were very jealous at that time because everything seemed so easy for the other parents. The world was falling for us and it was just the beginning of a very long journey. All the other babies went to their homes and families, there were new people coming to the hospital and leaving again and we were still there. We decided to focus on our baby’s health and it was difficult and painful and we didn’t pay attention to what was happening around us and outside of the hospital.
It was challenging because it was a 24/7 job without a brake and with out the privilege of stoping and saying I didn’t want want to work that day. My son was hooked to pumps which made noises all the time during the day and night. We had to give him his meds even at midnight or just to hug him or hold him because he wasn’t feeling well. This job was stressful and made me feel exhausted.
In a lot of occasions I felt like a winding sheet because all day I had to keep track of his medical records and deal with nurses who were nice but there were some that I didn’t like. I had to convince my baby to let the doctors take a look at him and at the end of the day I was screaming and being rude to my relatives who just wanted to know how he was feeling and how they could help. I couldn’t hold it with them as I could with the strangers. I feel bad about it.
Among those difficult times of sadness, anxiety and depression my husband and I had to make an extraordinary effort to be strong. We wanted to comfort him as much as we wanted someone to be comforting us too but this was just impossible because nothing can help you go thru this unless you really believe and have faith in God.
We decided to spend our time having fun with nurses and doctors and playing with hospital pumps and machines and we were there even during difficult procedures. We wanted our son to have a good experience in his childhood instead of remembering only medical procedures or strangers touching and manipulating him hundreds of times a day.
Slowly we learned how to cope with all of it, how to deal with a new world of doctors and how to appreciate life in a way we had never done before. For instance looking at babies the same age as my son that were already sitting down by themselves, crawling and my son had to be connected to pumps that made it difficult to hold him like a baby. It was painful but when I saw him trying hard to do it and achieving it with time and a lot of effort I was the happiest mom on earth and so proud of him. Some times I think that if my son hadn’t been sick I would had never paid attention to small things and I wouldn’t appreciate them the way I do now. He is teaching us a lot about life and now I like it. I wouldn’t exchange him for a healthy boy because of everything that I’m discovering that it’s out there but no one but him could open my eyes to really look and be thankful.