Pandemic 2020
It was January of 2020 when I first remember hearing the word “Coronavirus”. It was of little concern to me at this point because it was contained in China, but also because we were working on big goals in our NICU world. Jane was working on bottle feeding and coming off oxygen and Cora was struggling to get off the ventilator. Cora had her breathing tube removed on New Year’s Eve but had to be reintubated a few days later because her lungs weren’t ready. After a couple of weeks, Cora was extubated successfully, but still requiring non-invasive ventilation. Cora began to struggle with her breathing, yet again. She was requiring more oxygen, her breathing was labored, and she was running out of steam. I always knew when Cora was reaching her limit because her skin would become very pale, and she would quickly become sleepy and fussy. The attending doctor stopped in one morning to ask if we would like to try a longer course of steroids to help Cora stay off the vent and avoid the need for a trach. She explained that along with steroids came the potential for long term side effects, including developmental delays. She said she would give me some time to think about it, but that we needed to decide quickly. I was at the NICU by myself that day because Chris was working. I called him so that we could come to a decision together but we both felt at a loss as to what would be best. Do we allow her to go back on the ventilator which would definitely cause short-term (and possible long-term) developmental delay, increase risk of infection, and extend our NICU stay for at least another 6 months to a year, or do we try a 10-week steroid course that has the potential to cause long term developmental delay? The doctor came back in, and I asked her, “If this were your daughter, what would you do?” I’m sure doctors hate that question, but she was kind enough to give an honest answer. She replied, “If this were my daughter, I’d be doing everything I could to keep her off the ventilator to avoid a tracheostomy.” And with that Cora began her steroids. Cora’s lungs loved steroids and to see her comfortable and breathing with ease did my heart so much good. After a few days of steroids, Cora was only requiring a “whiff” of oxygen, as her doctors liked to say. Because both girls were doing so well, we were able to move off the more critical floors, down to the feeder/grower floor. This meant less support from our nurses, but it was a sign we were moving closer to home.
It was now February and the first case of Coronavirus was detected in the US and shortly after that, the first case in Ohio was reported. I didn’t have the brain space to put extra thought or worry into what was going on in the outside world. At the time, my current world consisted of my family and all my energy was being spent there. Beyond that, I tried to ignore the current state of the world, until the world literally shut down in March of 2020. Suddenly, all the rules of the hospital changed overnight. NICU parents were being told we needed to wear a mask at all times within the hospital, but that the hospital did not have any masks available to provide parents, so we would have to find or make our own and have one for the following day. Masks were not being sold in stores at that time, so I went home that night, found some extra fabric I had laying around, and sewed myself a pitiful looking mask. Grandparents were no longer allowed to visit, only one parent could visit at a time, and temperatures were taken daily before entering the hospital. The hospital café and cafeteria were closed until further notice so if you didn’t pack food, you went hungry for the day. Some nurses and doctors even reprimanded you if you happened to get closer than 6ft away from them while helping care for your baby during assessments. Along with the temperature taking at the entrance, was also the symptom interrogation. Here, they asked you if at any time in the last 10 days you’ve experienced literally any symptom, ever. “Have you sneezed in the last 10 days?” Absolutely. “Have you had a headache recently?” As we speak. “Have you experienced watery eyes?” Umm, hello, my children are in the NICU. I’ve had watery eyes every day for the last 4 months. But did I tell them any of that? Absolutely not. I always replied no to every question. However, when I would get to Cora and Jane’s room, I would often feel anxious that maybe that tickle in my throat or that headache was the start of covid. There was a fear in the back of my mind that I would be the one to infect my girls with something devastating and I would never be able to forgive myself for that. I had to remind myself that I just needed to keep doing the things I had been doing this entire NICU stay because we were already being careful and cautious with germs prior to the pandemic.
It was time for Cora to begin the weaning process from the steroids she was taking. Along with the wean came increased work of breathing, retractions, increased oxygen requirements, and a sleepy Cora Belle. We could tell her lungs were wearing out again. Overnight, the team decided to put her on high flow oxygen, which required her to move back up to the more critical floor where the team could keep a closer eye on her. They did not have a twin room available, so Cora moved upstairs while Jane stayed downstairs. Each morning I would drop off milk to Cora’s room upstairs, run downstairs to drop off milk to Jane and feed her a bottle, get her settled in bed again, then run back up to hold Cora. Every 2 hours I made this switch. The only room they had available for Cora upstairs was the negative pressure room. Negative Pressure rooms, also called isolation rooms, are a type of hospital room that keeps patients with infectious illnesses away from other patients. The air filtration system was noisy, and the door had to remain closed at all times. For nurses to hear Cora’s monitors from the hallway with the door shut, they turned the volume up so loud that I would jump every time one of her alarms went off. It was a very small, lonely, dimly lit, and depressing room to be in. I can remember sitting in the recliner holding Cora in that isolation room, feeling the weight of the pandemic sink in. The NICU already has a way of making you feel isolated from the world, and the effects of the pandemic only highlighted those feelings (the actual isolation room didn’t help either). I was praying for protection over Cora and Jane and our family, and the nurses and doctors that interacted with our girls. Then I turned to Psalm 91 and began praying verses 5-11 over them.
You will not fear the terror of the night,
nor the arrow that flies by day,
nor the pestilence that stalks in darkness,
nor the destruction that wastes at noonday.
A thousand may fall at your side, ten thousand at your right hand,
but it will not come near you.
Because you have made the Lord your dwelling place –
The Most High, who is my refuge –
No evil shall be allowed to befall you,
No plague come near your tent.
For He will command His angels concerning you
To guard you in all your ways.
Psalm 91 has probably been the most used passage of scripture I have used to pray over my girls. To back track a little bit, during the 20th week of my pregnancy, I was sitting in a church service as a song about God being our refuge was being played during worship. The word refuge resonated with me, and as I prayed, I felt God reassuring me that He would be a refuge, a safe place, for Cora and Jane. I knew my physical body was insufficient to bring these babies safely to term, but if I could place them in God’s care and protection? That was something my heart could rest in. Psalm 91 is full of promises from God when we choose to dwell in the shelter of His care. He promises to deliver us, cover us, rebuke evil, send angels to guard us in every way, protect us, answer us, be with us, rescue us, and ultimately satisfy us with eternal life. When I redirected my focus on God’s character and ability, He had a beautiful way of replacing my fear with His peace. And for someone who tends to let fear and worry creep in, that is such a valuable gift.
Thankfully after 5 days Cora’s respirations stabilized, and the girls were reunited in the twin room again. The doctors decided to restart Cora’s 10-week course of steroids, where we would try the weaning process yet again. Shortly after we got settled into our twin room, the head neonatologist came in unexpectedly to speak with me. She wanted to personally inform me that a NICU nurse on our floor had recently tested positive for covid. She tried to reassure me that within the week that this nurse had tested positive she had no interaction with Cora or Jane, but as she continued to speak, I could feel a lump growing in my throat and a pit in my stomach. Panic was creeping in. Covid was now tainting the cleanliness of our NICU bubble and all I could think about was how we desperately needed to get our babies home.
One of our primary nurses was taking care of the girls that day and after nearly 5 months of taking care of us, this nurse was not only skilled in assessing Cora and Jane’s well-being, but mine as well. After the doctor left, the nurse took one look at my apprehensive face and then did their very best to bring consolation to my worried mind. They also knew I hadn’t eaten that day because I had failed to pack anything, and the cafeteria was still closed. It just so happened on this day that a generous donor provided Jersey Mike’s boxed lunches for the nursing staff. When our nurse went on break to grab their free meal, they nabbed an extra box and brought it back to the room for me. While this may have been frowned upon by the hospital since it wasn’t intended for visiting parents, it was a small kindness that allowed me to sit down, pause from worrying, take in some calories, get my feet under me, and my head on straight again. These NICU nurses – I’ll never stop sharing how wonderful they were to our entire family during that time. Countless times, they went above and beyond their prime responsibility of Cora and Jane to care for us, too. Another time, I had spent the night in the NICU the night before Easter Sunday while Chris stayed home with Asher. Our primary nurse coming in on Sunday knew I had slept there overnight so she stopped at Dunkin’ on her way in to pick me up a coffee and breakfast sandwich. Some of these gestures I’ve shared may seem small, but to feel seen in your struggle is something that is so very valuable.
Media kept emphasizing that the most effective way to prevent covid was by limiting exposure to other people, and when I considered all the people Cora and Jane encountered daily (multiple doctors, residents, nurses, physical therapists, occupational therapists, speech therapists, etc.) the urgency I felt to get out of the hospital was magnified. That is when we decided to move forward with G-tube placement for both girls. At this point, the only thing keeping Jane in the NICU was her failure to take full feeds by mouth. We knew that a G-tube would make going home possible for her. Cora was still progressing with bottle feeding but had to finish weaning off steroids before she could be discharged. We chose to move forward with her G-tube placement so that when she finished her steroids, we wouldn’t have to wait on her feeding progression, we would just be able to take her home and continue to work on bottles there. The girls’ surgery went very well, and Jane was home within 5 days after her G-tube placement. Once Jane came home, Chris was able to take a few weeks off work so that we could take turns staying home with her and going to the hospital to be with Cora.
Cora also recovered well after surgery but could not wean off the steroids without regressing from a respiratory standpoint. It was nearing the end of April, and doctors were planning to start her 10-week course of steroids all over again for the third time. That meant it would be close to July before Cora would wean off steroids completely. During rounds I asked the attending physician if it was a possibility for Cora to come home on steroids. He quickly said no, and that they have never sent babies home from the NICU on steroids. My heart sank. I could not imagine having our family so divided between home and the NICU for another 10 weeks. For Cora to come home, doctors wanted her to be completely weaned from steroids and only requiring 1/8 of a liter of oxygen through nasal canula. Not only was she still requiring steroids, but she was often requiring 1/4 of a liter of oxygen, sometimes more than that overnight as she slept. Homecoming felt so far away for Cora. We grew more and more weary with frustration over the next couple of weeks. Because of how schedules worked on the 6th floor and staffing shortages, we saw less and less of our primary nurses which was an adjustment in and of itself. What made it even more difficult was that we were seeing less and less of actual trained NICU nurses. To no fault of their own, these nurses that were now caring for Cora didn’t have the expertise to care for a NICU baby. They were simply floating over from another unit of the hospital to cover the NICU. They weren’t aware of how all the seemingly little things make a huge difference for these preemies.
For instance, we were trying to reach an oxygen goal of 1/8 of a liter. If Cora required more oxygen in her sleep, we typically tried repositioning her first. If that didn’t help, it was standard for the nurse to turn her oxygen up in very tiny increments at a time. If she ever required ½ a liter, the medical team was to be notified and an x-ray of her lungs was taken to assess her respiratory status. One evening, Cora’s oxygen saturation kept dropping in her sleep and the floating nurse bumped her oxygen up to a liter and left it there for hours without even trying to wean her back down. So when the team came in to round the following morning, the overnight notes looked as though she needed far more respiratory support than she actually did. Another time, I came in to the NICU in the morning to be able to give Cora her first bottle of the day. When I got there, the floating nurse hadn’t even attempted to bottle feed Cora and had already started pushing it through her G-tube. I didn’t say anything at first because I didn’t want to offend anyone or cause drama. But then as soon as the feed was over, Cora vomited the entire feed (plus her steroid medication) up. A few hours later when it was time for her next feeding, the nurse brought in her milk prepared in a bag to run through her feeding pump. I politely said I would transfer it to a bottle because we were still working on bottle feeding. When he handed me the bag of milk, it was ice cold. This nurse hadn’t been bringing her milk up to room temperature at all. Just straight from the fridge through the tube. I call this the “Iced Neosure Latte”. And that was why Cora had thrown up the entire feed (including her very important meds) the last time. It was all these little things that added up to be big things for Cora. Especially when we were trying to reach goals to get us out of the NICU, it felt like incompetent nurses were keeping us from reaching those goals. It was increasingly irritating knowing that Chris and I could take better care of her at home, than leaving her in the hands of nurses who just weren’t trained to care for babies like her.
The following week the doctors rotated, and even though we had been told no to taking Cora home on steroids, we asked again. And this doctor went to bat for us. All of the neonatologists had a meeting concerning Cora and her steroid situation. They made a huge exception for us and came to the agreement to allow Cora to come home on an oral and inhaled steroid on nasal cannula of ¼ of a liter of oxygen. They felt Chris and I were responsible parents that were capable of meeting her medical needs from home. On May 8th after 198 days, we were all finally HOME.
Graduating from the NICU was incredible, but it didn’t make the pandemic disappear. There was so much we didn’t know about covid at the time, so we were doing our best to protect our family from catching it. And the best way we knew how to do that was through lots of hand sanitizer and more isolation. The all-too-familiar numbers and terms that I had become a student of during our NICU stay began circulating in the media. Such as, oxygen saturation (SpO2), oxygen requirements (FiO2), ventilator settings, terms like “room air”, tachypnea, increased work of breathing, etc. It’s almost like the NICU prepared my heart for the pandemic, because in some ways, it didn’t feel all that new. We had been watching our daughter struggle to breathe for a good 6 months, and even her homecoming didn’t mean her lungs were all better. They had been scarred by pneumonia and ventilation, so even with oxygen and steroids, breathing still looked fast and somewhat labored for her. She was still hooked up to a pulse oximeter nearly 24/7. And at night, her oxygen would still drop down into the high 80s momentarily. At the same time, we were so busy caring for our medically complex twins, making sure they were getting the right meds at the right time, hooking up feeding pumps every 2.5 to 3 hours, making sure Cora’s oxygen supplies were ordered on time, as well as G-tube supplies, taking them to multiple doctor appointments each week, etc., that there came a point where we had to shut out what was going on in the outside world again. In order for me to hold on to peace, it was time for me to take my eyes off the “monitor” and the media and turn my eyes upon Jesus. Within reason, we did all we knew to do to stay healthy, and then we just had to leave it in God’s hand and trust His protection with the rest.
Psalm 34:14 says, “Seek peace and pursue it”. Peace must be sought out. I have found that for me, it is a choice. I can choose to worry, or I can choose to trust that the most loving Father has my best interest in mind. I can choose to run through a list of a 100 “what if” scenarios, or I can choose to place my cares in his capable hands. I can choose to concoct the solution to every one of those scenarios, or I can choose to trust that Jesus is the answer, to every possible concern, every single time. I can choose to let intrusive thoughts hold me captive, or I can choose to take those thoughts captive and lay them down at His feet. When my heart is so knotted up with anxiety, peace cannot find a place to dwell within it. Fear will try to hold you captive, but God’s peace will break the bonds of fear.
Eventually, the girls were able to come off all medications. Cora’s lungs slowly repaired as she grew and she was able to wean off steroids and oxygen. Cora and Jane conquered their reflux and had their g-tubes removed at 2.5 years old. We got through Cora’s first readmittance to the hospital for a respiratory infection at 2 years old and again for a 2nd readmittance at 2.5 years old. We’ve even made it through a couple rounds of covid. Through it all, I’ve learned that peace doesn’t always come naturally for me, but I’ve also found that if I pursue it, keep my mind stayed on Christ, I will find it every time. You see, God didn’t just bring my girls through this journey of prematurity, He brought me through it, too.
“I sought the Lord and He answered me and delivered me from EVERY fear.”
Psalm 34:4
