After I held David for a few moments, he was wisked off to the Neo-natal Intensive Care Unit. Steve and I had already decided that Steve should go and stay with David during his first hours of life. Steve followed the doctors and staff to the NICU, but quickly returned to me, saying he just couldn’t deal with all the cords, exams, and medical staff. We were both completely overwhelmed.
I was transferred to postpartum and once I rested a bit, we headed over to see David. I think I was in a wheelchair, but I can’t remember for sure. There he was, this tiny little thing, laying in an isolette. I so badly wanted to dress him up in one of the cute outfits we had bought for him and take him home with me. Why was this happening? What was I supposed to do with this little baby who had so many needs. I felt completely inadequate. Where was the blond haired, blue-eyed boy we had hoped for? The nurse asked if I wanted to hold him, so while she tried to keep the cords from becoming tangled, she gently placed him in my lap. The NICU is an awful place. There are tons of beeps and alarms that go off randomly and nobody even acknowledges them. There are hurting parents and small babies and staff who would rather sit and cross-stitch than hold a little one. At least, that’s how I felt about our experience. There was a very sweet nurse on duty the first night who let one of our good friends sneak in and take some photos of David. Those photos we precious to me during our time apart the first few weeks and still capture the intensity of the first hours of David’s life.
On the second day of David’s life, we looked for neo-natalogist to talk with. We wanted to know if they had any information or answers for us. We literally felt like we were being avoided. Finally, we cornered a doctor and asked him if he could give us an update. He (in a thick accent) told us our son had Cornelia de Lange Syndrome and would be severely retarded. We pressed for more information. I don’t remember his exact words, but he gave us the impression that David would be a vegetable and would never walk, talk, see or hear. We went back to my hospital room and sobbed. I remember thinking, both of us can’t lose it. One of us has got to pull it together. But at moments like these, you can’t pull yourself together, you just have to be in the middle of the muck and mess. I called my sister and asked her to look up the syndrome online and print out any information she could find.
Overall the NICU was a very frustrating experience. We were new parents and felt completely ignored and condescended. I overheard one nurse telling another that David had a heart defect. No one had informed us of this, and I was irrate! We frequently had staff telling us to put David back in his isolette and let him rest. They felt we were overstimulating him by cuddling and talking to him. We didn’t know how much time we should be spending at the NICU each day. We wanted to be with David as much as possible but we were exhausted emotionally, plus, I had just given birth. Our friends, Tim and Susie had just had a NICU experience with their son (and Susie is a psychologist) and they gave us some great advice. They recommended holding, touching and talking to David as much as we could to help him bond. They encouraged not to take a backseat to the hospital staff. They reminded us that we were the PARENTS. We stopped being pushed around and came up with a plan. When we got to the NICU in the morning, we told the staff how long we planned on staying and what we intended to do with David (holding, changing, reading and feeding) during that time. We told them we wanted regular updates on any tests that were run and any new medical information that they had in his file.
During this crazy time, there were some real blessings. We had lots of friends and family come to visit David. His isolette was near the front window so we could show him off easily. We decided very early on not to try to hide his hand, but to make a point of showing people, talking about it and touching it. Our church family brought us delicious dinners every night and the highlight of everyday was checking the mail. Some days we would get as many as 20 cards from people who were thinking of us and praying for us. Many people we didn’t even know reached out to let us know the cared.
After two weeks (which felt like two years) we were ready to take him home and get on with life, no matter what that might hold for us. They kept putting us off and telling us there was no hurry. They wanted to place a g-tube (for feeding) before he left the hospital and the surgeon wasn’t available until the following Tuesday. That was over a week away! I asked for the surgeon’s number and called him up myself. He agreed to preform the procedure a couple days later. Three days after that we packed David up in his carseat and ran for the door. I kept thinking they were going to change their minds and want to keep him for a few more days. I felt like I was kidnapping my own child.
Flash forward four years. This is David with the same Curious George. What a delight he is to us!