When Shane was 3 weeks old, I held him for the first time. A brave nurse, and dear friend, juggled tubes and wires to place Shane in my arms. I held him for over 5 hours. I would have held him forever if I could have, but my breasts were becoming engorged. I wish someone would have warned me about that. Jeremy held Shane for the first time a week later. All of the members of the nursing staff were more than just the people who took care of Shane, they were friends and for a long time, family. Rachel, Shane's primary nurse, immediately "adopted" him. She referred to him as "her baby" and she made sure he got the best care, even if it meant standing up to the doctors to get it.
Shane came down with his first infection at a few weeks old. It was one blood infection after another, and in between, he came down with pneumonia. It seemed he would only get over an infection when another one would start. He was sedated and paralyzed by medication for most of his first 3 months. In total, Shane had over 20 infections (blood, urinary tract, and kidney) and pneumonia 5 times. My sweet, tiny little newborn was now huge with fluid every time he got an infection or had a surgery. He didn't even look like the same child. The TPN and Lipids he was receiving for nutrition through the central IV were causing hair to grow to the point that they tested him for Cornelia deLange Syndrome (a common symptom of this syndrome, along with CDH). He was on Morphine, Fentanyl, Codeine, Versed, Alburterol, Amphetericin, Lasix, Gentamycin... more medications and antibiotics than any little one should be able to humanly bear. At times he was on 20 different prescriptions.
I quickly learned to document everything and ask questions constantly. Things changed from 1 hour or 1 doctor to the next. I was the mom who left the signs on my child's bed "If you haven't washed your hands, do not touch me!" and would make a surgeon go to the sink before touching my son during rounds. I would complain when needed, speak up when needed, yell when needed. I became entertainment for the nurses and a pain in the a$$ for the doctors. I went from shy to Mama Bear overnight. Literally. I had to. My son needed me to.
It was during this time that I learned 2 of my 3 sisters were pregnant, Christie and Trisha (I also have a baby sister, Debra). I felt betrayed. How could they get pregnant knowing what I was going through? How will I be able to fight off the jealousy when they have healthy babies? They were single moms and I was married, and had done everything to try to insure a healthy pregnancy and baby. It would take me months to forgive them, though I knew I had no justified reason to be angry with them.
When you live this type of life, you become very close with the families of the children you meet. They are the only ones who truly know what you are going through. I prayed for many other children, and the list became longer with each passing day. P.I.C.U.s are like war zones. Children battle for their lives. Parents battle for their children. The medical staff battle disease, armed with medication and knowledge. A lot of these battles are lost. The first child I watched die was a 6-year-old little boy with multiple problems. He died the second day Shane was in the P.I.C.U.. He was in the bed beside Shane's. I tried to ignore it; I couldn't handle it. I had never been this close to death before. A little girl, Andrea, was put in that same bed space hours later. She was born on the same day as Shane, with the same problem as Shane had. Her mother was single and the same age as Jeremy and I. This baby girl fought for 2 weeks. The little girl died. I wanted to comfort her mother but it hit too close to home, I just walked out, went to bathroom and cried. I knew Shane could be next. I will always regret not going up to that mother and holding her as she grieved. I have known hundreds of children who have died since then and they have each taken a piece of my heart with them.
I met another mom of a child with this birth defect who had a little boy, a month older than Shane, that died at age 2 months. She gave me more strength in her strength than she could ever know. Rhonda was there for me even after Preston died. When another mom lost her little girl from complications after a heart surgery, Rhonda was there, a month after Preston died, to give her comfort and to help guide her through the funeral arrangements. I will never forget the selfless generosity that she gave everyone, even while still grieving for Preston. How can we send a man to the moon but not prevent all this pain and needless death on Earth to innocent, little babies?
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