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Five Weeks and a Day - A NICU Story - Day 24

Day 24 - September 6, 2014

I have mentally planned this entire day around my intention to hold LoLa skin to skin today. Yesterday I had even informed the nurse of my plan, and she gave me a heads up: she would pass my wishes along to the day shift nurse because depending on which nurse we had, they may be more or less supportive of the idea. Once babies are "wrapped" (out of the isolette and in clothing), some nurses aren't as keen on the idea of kangaroo care because of the work it takes to undress and arrange the leads and wires. They assert that it isn't as important anymore since the baby is older. Yesterday's nurse, however, assures us that it is our decision, we are the parents, and if it's important to us, not to let anyone deter us. It is very important to me.

It is very difficult to bond with my baby when there is so much equipment between us, when we share a room with a nurse, three other babies and their families, and I am at best a secondary or tertiary caregiver to her.

I go for a run in the morning with my good friend and lactation guru Andrea Judge and leave feeling positive and empowered. I return home and call the NICU to let them know I am visiting this afternoon, after Sean visits with his parents. His plan is to hang out, then leave and watch the Eagles game at a restaurant near the hospital while I have my time with her. The nurse I am speaking with on the phone says, "All of her feeds have been by mouth today, and although she's tired by the end, the tube can probably stay out." .... Tube..? Out?? We weren't even informed this was a possibility any time soon, considering her episode yesterday. My gut is telling me something is not right. I express this to Sean and he agrees. I let him know to warn his parents not to get too excited when they see the feeding tube out. I plan to get to the hospital at 1:30 but Mom and Dad get hung up in traffic and don’t get to the hospital until then. Since there is a limit of two people at the bedside at a time, there is no point in me going as well, so I wait.

When I am finally en route, I get a call from my mom. She wants to visit at 3:00. This gives me less than an hour alone with her. I start to get really upset that this day which I have planned all week is so far not going even close to right. I call my mom back and before I can even explain, she hears my voice and says, “I’ll visit this week.” I feel relieved that I can now spend as much time skin to skin as I need.

I arrive to meet Sean who is alone with LoLa, the nurse taking her lunch break. Sean says LoLa has just thrown a “temper tantrum;” she stretched her arms and legs, crying, sending the monitors haywire. She continues to fuss, unusual for her. We change her diaper, check to make sure her leads are situated. We aren’t sure what’s bothering her, but we’re sure she’ll calm herself down soon enough, especially once she’s being held. The game is starting soon, so Sean leaves us. I undress her, recline in the ugly beige pleather chair and snuggle LoLa against me under my shirt. She eventually settles down and closes her eyes.

That’s when things start really going downhill… She has a major episode, her vitals trending down to half their normal values - heart rate of 70, oxygen at 50%. I try to stimulate her, waiting for a nurse to come and assist. The covering nurse came in and began assessing her, repositioning her, stimulating. Her shift nurse joined. LoLa continues to throw events while the nurses study the monitor, trying to figure out the cause. Other nurses start poking their heads in, as the monitor is sounding throughout the entire unit, making quite a commotion. One nurse posits that she has air in her belly, it looks distended, and that perhaps when she’d been laid prone on me, this caused breathing issues. The nurse checks LoLa’s diaper again, and there is a small amount of stool, but the nurse feels she has more to pass. She measures and massages her belly, requesting a consult with the MD. A nurse practitioner arrives to assess on the doctor’s behalf. She listens to her belly, bowel sounds, checks her diaper again - another very small stool. LoLa continues to cry. In the absence of any major medical issue, the nurses conclude LoLa is exhausted from all of the PO feeding, and she needs a break and to let air out of her belly. The tube will be reinserted. I try to stop myself but I can’t help crying. I stroke LoLa’s head and hold her hand as they feed the tube up her nose and down her throat while she screams and squirms in significant discomfort. They secure the tube with tape on her cheek, then decide it’s not in quite far enough, remove the tape and insert the tube further.

I continue crying for an hour, trying to comfort her but not being able to hold her. I feel angry because I had wanted to bond with her today and felt robbed of this. I feel powerless and frustrated because I knew in my gut that her tube removal was hasty and hadn’t been communicated with us, otherwise I would have raised my concerns. Today is one of the most stressful days in our NICU journey. Sean and I do not return for her 9:00 pm feeding, opting to let LoLa rest, and spending the evening together at home, talking and crying together, supporting one another.

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