It was a Thursday. My daughter was in the NICU and had been since her birth a week prior. At one point she was on room air, but now she was intubated and had a feeding tube placed. A massive nitrogen tank had been wheeled over to her tiny bed and was hooked up to a large machine that has about ten billion settings for the respiratory therapists (RTs) to mess with. The nurses, doctor, and RTs kept huddling around my daughter talking about pressures, drug interventions, and blood gasses. At some point the RT finally told me that they had talked to the cardiac team and they were going to take my baby in for surgery the next day. The RT said “We might be able to keep her alive over the weekend but we don’t feel confident in that and it would be very hard, the best thing is to take her for surgery”.

I was absolutely ok with that. Don’t get me wrong, we as parents have a final say in the decisions being made about her care and yes, surgery, much less open heart surgery, is a big scary thing but the options for our daughter are very typically do the scary thing or she dies. I didn’t have any hesitation about letting my daughter go into surgery. I could see that she wasn’t stable and wouldn’t last long without it. But it was still a bit jarring to have less than 24hours notice. Somewhere in the back of my mind I knew that a different patient was being bumped off their schedule so that they could get my daughter in instead. I knew we were causing frustration for that patient and their family. Even if our surgical team made the sacrifice to add an extra case and stay late, we still bumped someone off that ideal “first case of the day” spot.

We had family in town to watch our son so I could spend all day at the hospital. I got there early in the morning, a backpack full of things I would need for the day, and warm comfy clothes. Although I had a feeling it would be ok, I still held an anxious heart. Nurses greeted me as I walked to my daughters bed in the NICU. It would be our last time here, after her surgery she would be taken to a different floor of the hospital in a dedicated Cardiac Intensive Care Unit (CICU). I was excited to get up to the CICU and have more specialized care with an excellent team and be surrounded by other families with heart kids. We had toured the CICU during my pregnancy and there was something special about it. No other staffing team seemed so joyful and full of life and it seemed like where we belonged (which was obviously the case).

A series of people came around, doctors, nurses, respiratory therapists, and finally the transport team. As they were busy getting her ready I sat in a chair against a wall and the feeling of helplessness sank in. Here were other people caring for my daughter, keeping her alive, interacting with her, and I couldn’t do anything. The tears started welling in my eyes. One of the nurses looked up and saw me. She very casually asked if I would like to come over and lift my baby while they changed some bedding underneath her. I said yes and was so happy she let me do something. My daughter was 8 days old and this was the first time I picked her up. Mind you it wasn’t a normal “mom holding her daughter for the first time” snuggle, I didn’t get to hold her close to me. I simply had a hand under her head and shoulders and the other under her butt. I lifted her 8ish inches straight up and then set her back down a few seconds later. But it was the first time feeling her full weight in my hands. She was so light, she was born full term but was only 5lbs, her skin loose around her body with barely any fat at all so she felt bony. It was both a wonderful and terribly sad moment. The feel of her just seemed to reinforce the difficulty her body was having in staying alive. She was not a healthy baby, and she didn’t feel like one either.

 A transport team along with a nurse were responsible for pushing her in her bed and all of her attached equipment down to the staging area for operations. I followed them out of the NICU, down an elevator, through secure doors, and into an open bay of beds with people prepping for or recovering from various procedures. Nurses passed paperwork, asked questions, I signed consent forms and spoke to her anesthesiologist and surgeon. They said they were ready and told me to give her goodbye kisses. I said goodbye to my tiny daughter, told her she was loved by myself, her dad, brother and most importantly she was loved by God.  I delicately gave her a kiss on the cheek before turning around to a nurse who led me away to a waiting area. It was filled with other ppl waiting for loved ones to come out of procedures or people waiting to go in. It was a catch-all waiting room for everything from the youngest child to the oldest adult who was requiring anesthesia for any range of services offered by the hospital. Most of the people there that day were elderly folks who were in for labs or screenings. I found a chair to perch in. I sat huddled up practically sinking into my hoodie and silently crying. The what-ifs came flying into my head, mostly “what if that was the last time you ever saw your baby alive?” Along with it came the weight of every doctor appointment, every discussion about survival rates, the flash of images of my daughter hooked up to lines and sensors and barely being able to touch her. It was crushing. I knew somewhere in my head it would be ok, it just felt like a lot in that moment. I breathed and prayed and updated some family and friends that my daughter had been taken back.

It was HOURS of waiting. And while I had brought plenty to do, I couldn’t seem to bring myself to any of it. I was sinking in anticipation like a thick fog pulling me down. At some point I forced myself to eat and I found a place to pump. More waiting. Finally one of the nurses came and told me they were about done and her surgeon would be out to speak with me soon. My face must have conveyed concern so the nurse also added in a quick “she’s doing well”.

The surgeon told me that it went “ok”. They were supposed to be putting bands around her pulmonary arteries and placing a stent in her patent ductus arteriosus (PDA). They were able to place the bands which stabilized her but her PDA was too small to fit the stent into. It meant that instead of recovering from surgery and then going home, our daughter would have to stay in the hospital and be continuously given a supply of prostaglandins until she was big enough and stable enough for the next surgery.

I was so relieved that she was stable and alive that I didn’t care about her having to stay in the hospital longer. Thanks to their care it went from ”she’ll probably die over the weekend” to “she’s full of life and we just have to wait for the next step”. It was like being given my daughter back. 

I was taken up to the CICU and told to wait there. They were getting her “settled” in her room. It meant they were sorting out lines, getting drugs running, and making sure she was stable. It took much longer than I thought it would. It ended up being a couple hours but I was finally allowed into her room. It wasn’t as intense as I had prepared myself for. Her chest had been closed and there was a dressing covering her incision area. She was calm but easily stirred. I had to keep my voice down or not speak at all because she would start fighting too hard and become unsteady. Same thing when I touched her. She was a feisty little thing and required heavy sedation. One of those kids who would start pulling on lines any chance she got even though she was so weak. But she was ok, she wasn’t barely hanging on to life anymore.

It was a long, hard day spent in the cold hospital but my daughter was doing just fine and my faith and hope were unwavering.