I woke up early the next morning and couldn't fall back asleep. I'm talking 5am early. My mom left me her keys and I drove up to the hospital to see my girl. I checked in at the front desk and got a parent badge and an access card to get in and out of the NICU whenever I wanted. I went up to the NICU and checked in at their front desk and the nicest girl showed me where to scrub in and the room Leila was in. It smelled strongly of cleaning supplies and hand sanitizer. I had no idea how much sanitizer I was going to be accustomed to at bed 33.
I walk in and see about a half dozen medical staff in the room. This is considered "rounds" and they meet every morning every single day on every single patient. My little girl was laying in a bed with the top off...I COULD TOUCH HER. Same cords and tubes but now there was a new line in her left arm connected by several medications. I would soon learn about many medications and their purposes. I would learn about dosages and weans and the sounds her drip machine would make when it was time for more. I walked slowly to the bed afraid to touch anything or disturb the motion to take a little peek. I was greeted by a nurse with blonde hair and blue scrubs with a very welcoming smile. "Are you mom?" A very quiet and timid "yes" slipped out as I felt my anxiety at its highest. She slid up a chair and invited me to sit down next to the bed and informed me they were doing rounds and would be rounding on LeiLani soon. I still clenched my bag and sat very inside myself unable to touch my baby and just stared at everything. "You can touch her. She's very sedated but you can touch her". My hand shook as I pointed my index finger to touch her hand. When my finger met her tiny hand her toes began to spread and my heart fluttered. "She's alive" I thought.
I've been thoughtful on the morning Zayley died and why I didn't come. I knew in the moment it wasn't a good idea while I was so deprived of sleep and didn't have it in me to drive to Ogden but it was something else. Something told me to stay home. In the moment Carrie asked if I would be coming I went to say yes and then stopped and I think I just said "I'm not sure." I've talked to my family one by one over the last year and we talk about that day and I feel unrelatable. Trying to keep a baby from dying there were tubes and closed eyes. My niece laid in her bed the same way my daughter laid in hers. They both had tubes and both eyes closed. Members of my family passed my niece around knowing she was gone but said goodbye one last time. One last squeeze. I realized in the moment I glanced at LeiLani inside this bed that's what urged me to stay home. I had to be ready for this and not traumatized by it.
The nurse, a resident, a pharmacist, surgical staff, a respiratory therapist and a nurse practitioner circled around us and all I remember were the smiles they wore on their faces. "LeiLani Jones born September 15th with a left sided DH. Unrepaired at this time working on staying stable." One by one each gave a statement in their area and plans for her. Named off her medications and the dosages per hour and what their plans were for ventilation. "She doesn't tolerate being touched and requires a higher setting on the jet." Hmm I have a child that doesn't like to be bugged? Weird. Eyes turned to me feelings of panic and sweat hung over my head from a "do you have any questions?" I said "no. Wait, yes. What does this do?" and pointed to the ventilator. I felt I needed to ask at least something but I was so overwhelmed I couldn't. All I could think was how much I wanted my mom. I knew she would ask the questions I couldn't. The nurse practitioner explained every single thing that was hooked to my girl. What they did, what they were for and how much she estimated she would be on them. I vigorously shook my head yes as I tried to retain all of this new information and adjust to the fact I was even here.
When mom walked in the room I nearly broke down. I decided to take a step back from the bed and sat in a nearby rocking chair. A lactation consultant came by and to talk to be about breast feeding. She gave me some papers and a bag of supplies. A social worker made her way in and was extremely nice to me. She asked how I was doing before she spoke a word about LeiLani. She looked me in the eyes and asked me what she could do to help me. She asked me about financial aids and how to get the help I needed. She asked me if my questions were answered and if I needed space. She was the best face I greeted in that room. Since LeiLani was born not a single person in the world asked me how I was doing before asking about my daughter. The truth is is that everyone's first thought is how the baby is and it's not that they don't care about you it's just that they don't think about it. I never realized that until it happened to me. I met one more person that day that gave me a package with a small fuzzy blanket, an "about me" sheet for LeiLani and a few packets with hospital information.
My dad came in shortly after that, gave me a kiss on the top of my head and then with beaming eyes walked straight to LeiLani. He touched Leila's hand with his index finger just like I did. He looked up and said "wow Anne, she looks just like you. She's beautiful." My mom was off to the other side of the bed snapping as many photos as her phone could possibly hold. I had them stand over to one side to get their first photo with her and instead of looking at me they both just stared at her. It made for a really cute photo and definitely shows the love they had to keep inside those nine months. A cardiologist came in and did an echo on her. When I was pregnant I had a fetal echo and it showed a hole in between her two chambers and then a few weeks later the hole was gone. This echo was to ensure the hole was really gone and it was! A tiny doppler for a tiny chest. I stayed and talked to her nurse all day started to feel more at ease as time passed. I got more comfortable touching her and stayed until about 9pm.
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