Medical update: WHO CARES!?!? WE GOT TO HOLD ROWAN TODAY!!!!
The nurse we had today was spectacular. She had me help during her assessments by showing me how to use their temperature slips and letting me take care of his diaper changes. She also told us this morning that they needed to replace his NG tube and after that she'd give us some time to hold him.
WHAT?!!?
We had been told that it's okay to hold babies when they are intubated, but it's really up to how comfortable the nurse feels with it and we didn't expect it to happen until after they got the tube out.
So early this afternoon, our nurse wheeled his IV pole over next to his respirator, I pulled up a chair, and for the first time since I got to briefly hold him after he was born - Rowan got to snuggle up against me and I got to hold my poor little fighter.
After Rowan was born, Matt was allowed to hold him long enough to bring him the five feet from the doctor to my bed. I held him long enough to tell him "Happy Birthday" "I love you" and "see you soon" before they took him to the NICU. That was all either of us had been able to really be close to our son. When his CF diagnosis happened and they told us we might lose him - my first thought was that I wouldn't get to hold him again while he was alive. I realized that the first time I might get to really hold my son would be when the breath had left him. That fear of not holding him again has been near constant.
Today, I got to stare down into his little eyes and watch him cuddle up and drift off to sleep. I got to sing to him and tell him about our home and his sister and when his dad and I first met. I got to feel his little heart beat and his chest rise and fall.
There had also been a little fear that because of all he'd been through, he might not like being held or touched at first. Pretty sure he loved it. He seemed so happy and peaceful. I held him until one of my arms went completely numb, and then Matt got his turn. Even with all those tubes, he's still our little man. Our son. And we know what it's like to hold him in our arms now.
Great. Day.
Our son, Rowan, was born with Congenital Heart Disease and later diagnosed with Cystic Fibrosis. He had 2 open heart surgeries, 5 heart caths, and 2 additional surgeries. Realizing that despite fighting for him, Rowan was never going to get better and that he was hurting, we made the decision to change our fight from a long life, to a beautiful end to it. Hospice was a true gift and a beautiful time for our family. We said goodbye to our son when he was 7 months old.
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