We call it 'Louisa time'

Louisa Jean Riley 6 Months Old

I never imagined our first baby would have Down syndrome. I never imagined our first baby would need open heart surgery. I never imagined our first baby would be 'failure to thrive' and require a feeding tube. I, also, never imagined the lessons I would learn throughout this first 6 months of this sweet baby's life. Being a parent is a very humbling experience. I knew I would learn to be patience but I never imagined just how patient. 

Louisa has had an NG tube since she was 2.5 months old. I remember the day her pediatrician looked at me and said, "It is time. She will need to get the feeding tube Hilary." The lump that formed in my throat was so painful. The phrase, "You just failed your child," scrolled on repeat through my mind. I pushed down the painful feelings and packed our bags for the hospital. I grabbed my fake smile and 'armor' and accepted the fact that Louisa would have a feeding tube.

Prior to Louisa's surgery Mike and I constantly looked to the surgery for relief. The surgery was our spot of light in the dark cave we had been stuck in for months. I was convinced that after surgery our lives would change immediately. I kept picking myself up off the ground because it WAS going to get better. I felt strength because there was an end to our mess. 

When we brought Louisa home from Cincinnati and there wasn't instant gratification I was broken. It wasn't supposed to be this way. Hadn't I been strong enough God? Hadn't I been patient enough God? Hadn't I glorified you enough God? Hadn't I loved this baby enough God? Had I not leaned on you hard enough? Had I not prayed hard enough? My soul was hurting. My heart longed for a 'normal' life. I was stuck in 'tunnel vision' (Val Clark, Fort Wayne Young Life talk).

I hated the NG tube. I hated feeding Louisa with syringes. I hated washing thousands of syringes everyday. As much as I hated the NG tube I wouldn't even talk about a 'G' tube. (If you are not familiar with a G Tube click this link Kids Health G Tube) Last week I could not shake the thoughts of Louisa getting a G tube. Several people asked me about the possibility of a G tube and I, myself, thought it was the path Louisa was taking.

Then a miracle. Louisa started taking more and more of her bottle orally. The first time she drank all 4 oz herself I sobbed. I was holding Louisa and walked into the kitchen with tears in the eyes and whispered, "She just took the entire bottle herself." Mike's eyes grew big and he smiled and said, "Then why are you crying momma?" It was the relief I had been deeply longing to receive. The following day Louisa took all of her bottles orally. Mike and I tried not to get overly excited because nothing is guaranteed with this child. By day 3 we decided to take our her NG tube and I am thrilled to report she has continued to take all her bottles orally.

Praise you Lord. Forgive me. Forgive my impatience. Forgive my stubborn selfishness. Forgive me for not believing you were holding me the whole time. Forgive me Lord.