48ish hours after surgery

I'm sitting in the hospital room unable to sleep and thinking that just maybe my thoughts are gathered enough to type them out.

We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.

The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.

In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.

The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.

The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.

She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.

The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.

I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?

Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."

Nichole