Sue and Liam

5 years ago today, we traveled back to UCSF for follow up appointments. A clinic for kids born with CDH ran by the specialist that treated our babies in their NICU. I went in praying for good news, but knowing in my heart that we would receive bad news. One day I will learn to trust my heart (or gut) because the news they gave us brought me to tears.

5 years ago today, I sat in a room with 3 CDH specialist and listened to them tell me that my son was failure to thrive. They told me he wasn't gaining weight properly, and that he needed a feeding tube. Despite exhausting myself in an attempt to get Liam to eat and gain weight, I had failed. I felt that I hit rock bottom. I had failed as his mother. The specialist tried to tell me it wasn't my fault and that they could tell by the detailed records I kept of his feeds and meds that I had done more than any normal mother. I had, at some point, stopped being his mother and became his nurse. It was how I coped with my PTSD and anxiety, After it was set that we would once again travel to UCSF for a feeding tube, we left. I felt broken. Broken and hurt.

There was something we couldn't leave SF without doing.  We couldn't not stop and see our favorite NICU nurse and primary Sue. We had to take Liam to see Sue. Sue became like family to us while we were in the NICU. Liam and Sue had a special bond. Liam loved to fake being asleep (under the paralytic) but when Sue would turn her back to him, he would open his eyes to try and see her and he would smile. Before she turned back around, his eyes would close and he would be back to pretending. I tried to tell her but she said he couldn't be awake because they had him under the paralytic. She'd turn her back and his eyes would fly open again. I could swear he was laughing at her. Finally she believed me and sat there staring at him for so long, he couldn't help but open his eyes. We all had a great laugh. Of course after that they had no choice but to increase his paralytic.

When Liam would cry, she would place her hand on her hip, shake her finger at him and say "hey! there's no crying in baseball!". Liam would stop crying and smile at her. She knew that when he didn't stop crying that things were serious. In the picture above, Liam is snuggled into Sue's arms, happy as can be. Shes softly talking to him, telling him what a good boy he is. He of course, smiled at her. 

As Liam grew, I would tell him about his NICU nurses Sue and Cindy. I'd show him pictures of himself as a baby and he'd say "awe cute baby". When he found out it was him he'd say "What!? No! I no baby" and I'd laugh. I would tell him how amazing his nurses and doctors at UCSF were and how they "fixed" him. He was always so proud of his scars. 

Thanks again Elizabeth Nelson and Nayeli Faith Foundation for helping us make this trip and this memory possible. The Nayeli Faith Foundation helps families with kids at Ucsf born with CDH. They help with parking passes, food cards, hotel rooms, gas cards and more. If your looking for a foundation to donate too, this is a good one. Check out their Facebook page for more of the good work they do.