The first night was a long night for Ethan and I. The morning was no better. His breathing was raspy-wheezy and even with oxygen and breathing treatments the doctors weren’t able to improve it much.
Early that morning, Christine texted me the following, “The Lord is close to the broken hearted and saves those who are crushed in spirit.” (Ps 34:18) Praying today for strength, courage and supernatural energy as you comfort your baby through these next few tough days and sleepless nights.”
I am thankful that God often uses others to speak to us. Christine’s message was right on for what I was feeling, but was also a foreshadowing of what was to come.
Tuesday morning I tried to hold Ethan. I wanted to love on him and was hoping to nurse him. But even on constant morphine, the pain and tenderness got through to him enough that he would cry out loudly in pain and hold his breath making his puffy little face grow deep purple! The nurse helped me get him into a holding position. It was wonderful to wrap my arms around him. But when I tried gently rolling him in towards me to get to a nursing position, he cried out in pain and I just couldn’t do it. I was able to feed him a couple ounces in a bottle and hold him for a couple hours. His head was now terribly heavy from the swelling and fluid and plates. Within about 20 minutes, my arm from my shoulder to my fingertips went completely numb and started to throb. My discomfort was small compared to Ethan’s pain so I bore through it hoping to bring him some comfort. And truthfully, holding him was what I most looked forward to that day!
The neurosurgeon who operated on Ethan came in to check on the patient today. Brad was using the restroom during this pop-in visit. There was nothing for him to see under the swollen bandage, but just seeing him in person was comforting. Until he told me this… “When I removed Ethan’s skull, his brain relaxed and rounded out.” By “removing his skull”, I originally assumed it was a 1” cutting out of bone down that sagittal suture. However, the neurosurgeon explained that he had actually cut the skull apart and removed all but the back section. I looked completely dumbfounded at this news (and the neurosurgeon looked surprised we didn’t know this). As soon as Brad came back (the neurosurgeon was already gone), I shared the conversation with him. Brad’s comment was the same as what I felt, “I’m glad we didn’t know that going in to the surgery. I don’t think I could’ve handled that.”
Typically Tuesday is the day that babies move out of PICU into a regular room on the pediatric floor. However, he would not eat, wasn’t peeing the proper amount, but the big thing was his wheezy-raspy breathing… which meant we were staying in the PICU another night.
That evening Ethan’s breathing worsened. His oxygen levels were good, but he was having a hard time catching his breath. The doctors were concerned, too. With the doctors, nurses, specialists hovered over his bed, touching and prodding him, combined with his difficulty breathing and swallowing, Ethan started to panic. His little legs kicked and pushed himself up as he was struggling to take another breath. His eyes grew wide and looked scared. I was worried before, but now anxiety took over. I began pacing and shaking. And with each of his struggling breaths, I broke down more.
Finally, we suggested the idea that the under-chin part of his head bandage appeared very tight from the swelling of his face and perhaps that was what was making it so difficult for him to swallow and breathe. The nurse and doctor agreed, but kept repeating that the head dressing needed to stay on through the night and that plastics needed to check it out since it was their dressing.
By this time, Ethan has worked himself up to sleep and his breathing had calmed, but I hadn’t. My heart raced with nervousness, it both scared and hurt me to him in this condition. And I think the stress of the whole surgery overwhelmed me. I lost it. I succumbed to tears. Fear, a hurting heart, tiredness… all just flowed as I melted down. All I could think of is I need someone to pray for us because I couldn’t handle this burden at this point. In between Brad hugging and holding me to comfort my anxiousness, I texted three close friends. But I really felt like I needed to text Christine (Ruthie’s mother) and I quickly sent her the same prayer request.
At last, a plastic surgeon came in and snipped away at the tightness of bandage from under Ethan’s chin. As it loosened, relief immediately came to Ethan’s swollen little face. As treatment was followed through on, I started to calm down, yet now, night was upon us. Brad repeatedly volunteered to stay with me at the hospital (rather than going back to the Ronald McDonald House). “Ethan has the doctors to take care of him. You need someone to take care of you too,” he said consoling me. I assured him I was fine. Truth was, I wasn’t. I was still a mess of nerves. I wanted him to get some rest though. Expecting a repeat of Monday night… dinging monitors and a parade of nurses, one of us needed to be rested and ready to care for Ethan the next day.
After Brad left, I sat down to pump and spent an hour praying for my sweet little guy. I laid my hands on him and prayed. And then I put myself to sleep praying. The night felt dark. Really dark. Ethan was now doing fine, but every time my eyes opened, my mouth and my heart were praying.