Lily Grace: A NICU Story
The night before, Lily got placed in the NICU to warm up, I was told she’d only be there for a few hours. The next morning, Jeremy went home to let out our dog Luna and give her breakfast. While he was gone, the attending doctor in the NICU and Lily’s NICU nurse came into my room, telling me that Lily was not doing well and that they needed my consent to put a catheter into her Umbilical Cord and they were going to Intubate her. They needed to move fast and I completely lost it. By now the haziness of surgery drugs had worn off and the last thing I remembered was her just needing to warm up a bit and them promising they would bring her right back. Why in the world did they need to do these procedures? When did she get admitted into the NICU? The assigned doctor would try to explain it to me, but between the rush, his thick accent, and heavy medical jargon, I just didn’t understand what was happening and I felt forced to sign a consent form with absolutely no clue why or what was happening. I remember calling Jeremy balling my eyes out after they left, feeling so helpless and so scared since I didn’t even know how to tell him what was happening. The hospital manager had made her rounds into my room a couple hours before this had happened and she told me if I had any questions during my stay, to give her a call directly. So, when we got this report from the doctor and I had no idea or understanding about what was happening, we called her to see if she could help explain it in simpler terms. She spoke to Lily’s doctor and told him that he needed to give us regular updates on Lily, since I hadn’t remembered getting any from any hospital staff members since the time she initially went up to the NICU the evening before. Her doctor later told me: “I could give you updates, or I could spend my time trying to save your daughter’s life. You decide.”
When we were pregnant, we got a prophetic word from David Wagner, telling us we were going to receive a miracle this year, and that the dream I had since I was a little girl was going to come true… that our Miracle would get a miracle. You can read that story here if you haven’t yet. Because of this, we had an inexplainable amount of peace and hope throughout our whole NICU experience. Obviously, we had some ups and downs. I was hysterical initially and at various times would get really frustrated with our NICU doctor, but overall, we knew she was going to be ok. I honestly don’t know how I would’ve handled some of the things we were told, if it wasn’t for having this promise to hold on to.
Once Jeremy got back to the hospital and she was done getting intubated and put on the ventilator, I was taken to the NICU to see her for the first time since she was taken from me the night before. I don’t know if I was prepared to see what I saw. She looked so fragile. I was only allowed to touch her little fingers, and we couldn’t talk around her louder than a whisper. Loud noises would cause her O2 levels to dip. They did a bunch of bloodwork to see if she had some sort of infection, and then they did an echocardiogram to see why she was having such a hard time breathing and getting oxygen. After doing an echo, they confirmed that she had pulmonary hypertension and had 2 little holes in her heart, which was causing her blood to just get pushed around inside her heart and never making it to her lungs to get oxygenated.
Lily was receiving 100% oxygen support and was on inhaled nitric oxide. After 24 hours, Lily was still not responding to the ventilator she was on and the support she was receiving. I remember her doctor trying to tell us all of the reasons she could’ve not been responding and feeling an incredible amount of mom guilt – “It could be because she was born at 37 weeks, it could be because you had gestational diabetes, it could be because she has the double dominant gene.”
“I’m sorry, WHAT?!” Everything we have been told was she didn’t have the lethal gene. I begged him to contact someone from the LPA Medical Advisory Board to get a second opinion before he dropped terms like a lethal diagnosis and double dominance. If that was the case, we would be spending our time differently - holding and loving our sweet baby girl, while keeping her comfortable and soaking up every minute that she would have with us on Earth.
They then switched Lily over from a conventional ventilator to a high frequency oscillatory ventilator to see if there would be any improvement. However, she did not handle the switch well so went back to the conventional ventilator. I remember seeing them hand pump oxygen into her little body with a baby mask and bag – you know, the thing that you usually only see happen in a show like Grey’s Anatomy. Her doctor was running out of options and suggested a transfer to UC Davis to do ECMO. The moment he suggested a transfer, I was hit with a new wave of peace and relief. Within 2 hours a helicopter would arrive from Sacramento to pick up our girl and we would be free from the NICU doctor who didn’t like to listen to us or reach out to the skeletal dysplasia specialists when he didn’t know everything about Lily’s diagnosis.
We had a hard time connecting with my OB. She would check on me in my postpartum room and only find an empty bed since we were in the NICU with Lily. Then when she would go check on Lily in the NICU, I had usually gone back to my room to get some food or something to manage my pain. Sitting upright in an office chair all day next to Lily’s bedside, wasn’t the most comfortable for a fresh incision in my abdomen. My OB found out that Lily was getting transferred to UCD so she came to find us. I remember her looking at me with tears filling her eyes and with so much compassion, telling me that normally a c-section stay is 3-4 days, but the minimum for insurance is 2 days. She told me that because Lily was getting transferred, and I had just hit the 2-day mark, that she would discharge me, but I had to promise to “take it easy and take care of myself.”
We then had to figure out logistics. One parent was allowed in the helicopter but I wouldn’t be discharged in time to go, and because I wasn’t allowed to drive, I would’ve had no way to meet Jeremy and Lily in Sacramento.
Within 2 hours, the flight team arrived with their NICU stretcher and very carefully transferred Lily off of the hospital ventilator and onto the transport ventilator. Different doctors or nurses from the hospital would go over their reports with the flight nurses. They transferred all of Lily’s records, all of her x-rays, her scans, and handed over all of the colostrum I had worked so hard to pump. Aaron was one of the flight nurses and he was fantastic and so very kind. As they were about to roll her out of the NICU to head to the helicopter, he had told us that Lily was already responding much better to the tiny transport ventilator and he would take good care of her. She would be ok. I learned that day that not all superheroes where capes… some where flight suits. I don’t know if I can even put into words what it’s like to feel so helpless and see your tiny little baby get taken away, to go to a different hospital and you can’t go with them. We just had to pray and trust that she would have a safe flight and that she was in good hands.
Once Lily was on her way to UCD, Jeremy wheeled me back to my room and our nurse started the discharge process. When all of our papers were signed and everything was packed up, my nurse wheeled me outside while Jeremy got the car. She gave us both a big hug, and with tears in her eyes told us how sorry she was to be discharging us under these circumstances and that she would be praying for our family.
We went home to go get some more clothes and I remember how heartbreaking my reunion with Luna was. Dogs are smart. She knew I was pregnant when we left for the hospital and she knew when I came home that there was no baby. She was pacing in circles around me, looking at all of our bags; her anxiety was high and she was looking for Lily. She knew something was wrong and that Lily wasn’t with us. We packed as fast as we could in a foggy haze. I think I only brought a week’s worth of clothes, if that even, thinking it would be enough. We grabbed Luna and by 9pm, we were on our way to Sacramento. By now, our pastor had sent out a massive prayer chain. People were texting and calling and even through the chaos and fear, there was an incredible amount of peace, that I can only describe as being from the Lord and otherwise impossible. We were living through what felt like Hell. It didn’t feel real and I felt a bit numb, but we had promises and encouragement that outweighed any darkness.
We got to UC Davis Children’s Hospital around 11pm and when we had arrived Lily was wearing little yellow ear muffs from her helicopter ride, to help cancel out some of the noise. We met with some of the doctors who had just done their rounds and they gave us an update on Lily’s treatment plan. Because she was already responding better on the transport and UCD ventilators, doing ECMO was put on hold. This was great news!
The NICU at UCD had a room with a bathroom, twin bed, and recliner that families in our situation could stay in for one night, while a room opened up for us at the Ronald McDonald House (RMH). I’ve never had a baby that I could take home immediately, but I think having a NICU baby has to be more tiring and exhausting. I was still getting up every 3 hours to pump so my milk would come in and then we were up by Lily’s bedside from about 8am-10pm every day, without any naps.
A couple nights later we got a room at the RMH and we were taken care of so well by our community. Jeremy’s family made us homemade meals to eat when we’d get back late at night to RMH. Friends from my job had snacks and treats delivered to us. Our parents would take turns sitting by Lily’s bedside to get updates so we could go get food or run errands. Friends drove down from Redding to visit, raise our morale, and pray with us. A fundraiser was created to help cover our medical expenses. Every act of kindness made me so emotional and words could never express how grateful we were for every little outpouring of love.
When Lily arrived to UC Davis, she was placed in the Lion room – the room for the most fragile of babes. She shared a room with one other baby but every time the other baby would cry or there was extra noise in the room, Lily’s stats would drop, so her roommate got evicted and she had VIP service in a room to herself. After almost a week, Lily was improving and I was finally able to hold her and have skin to skin. The next morning, when Lily was a week old, she was finally able to be extubated! I remember hearing her cry for the first time after almost a week and she sounded like she had the littlest raspy lion roar - fitting for the Lion room.
To be honestly, the rest of the details are all a bit foggy from the remaining 2 weeks in the NICU. Once Lily was extubated she graduated to the Giraffe room until we got even closer to discharge and she moved into the Elephant room. At some point one of the holes in her heart had closed, so she was able to be completely weaned from needing O2. She was also slowly weaned from all of the sedatives and drugs they had her on to keep her comfortable.
While she was intubated, she was receiving all of her nutrition from a feeding tube. I would spend my days pumping and then every 3 hours Lily would get fed. The only benefit of Lily being in the NICU was the schedule she was on when we brought her home. She was trained that every 3 hours was time for food and she would wake up at exactly 11, 2, 5, and 8 – to the minute. Everyday day we would meet with lactation as well as speech to work on feedings. For the first few days I tried to nurse but it was just too challenging. Lactation had a hard time finding positions that worked well for me. There were too many wires, too much boob, a painful c-section incision, too short of arms, lip & tongue ties, and a sleepy baby, who had a hell of a first week and just didn’t want to cooperate. I could also pick up on some of the nurses’ insecurity of not knowing how to help someone with achondroplasia, which then made me feel more insecure and didn’t help anything. So I quit trying to breastfeed and our main focus was to just do what we needed to do, in order to get us out of the hospital. Speech would come every morning to work on bottle feeding. She would need to take 60mls by bottle for 85% of her feedings for 2 days straight, in order to be able to be discharged. On most occasions, she would only take about 7-10mls, with hardly any interest. We’d then have to wait another 24 hours, to meet with speech the following day to see if there was any improvement.
On day 17, something finally switched and we started to have breakthroughs with feedings. I finally found the magic position to hold her and she went from drinking only a few mls to 35mls on her own, followed by 55mls the next time. Once she hit this point and figured out the bottle, her feeding tube was removed and we were well on our way to getting discharged. She had to prove herself for another 2 days, but on the evening of day 19, we were told we would be going home tomorrow. Praise the freaking lamb!!! Our discharge day was set for July 27, 2018 – the day before Lily’s due date.
On July 23, 2019, a wildfire started about 16 miles west of our home town in Redding. Fires happen pretty regularly in the summer and on a hot summer day, smoke can usually be seen in the distance, so we didn’t think too much about it when we found out it this one had started; we were a little preoccupied. Friends would post about it on Facebook and it seemed like this one was harder to put out than some of the others… it kept creeping closer to our town. Due to very high temperatures and heavy winds, the fire nearly doubled overnight and on the 26th had crossed the Sacramento River, making its way directly to the heart of Redding. On July 26, 2019, we were hearing reports of mass evacuations, our friends were leaving town, the power was being shut off, and our city was filled with thick smoke. We were in the NICU and started hearing the walkie talkies around 8pm, chatting about calling more nurses into work, so all of the flight nurses could go evacuate the babies from the Redding NICU. Once we heard the nurses planning and lots of staff running up and down the halls, we knew that it had to be bad in Redding. All night I listened to the sound of helicopters take off and arrive at the hospital, bringing another Redding baby to safety.
Our nurse that night, was starting to go over some of our discharge instructions with us and then said, “Wait, aren’t you guys from Redding? Do you have a place to go?” We told her we had family in Davis where we could stay, but didn’t have any of Lily’s items. We had only brought her take-home outfit with us and everything else was in Redding. Our nurse loaded up a big bag full of supplies for us – Diapers, diaper cream, disposable bottles and nipples. One nurse was even able to find us a “bed in a box” to use as our makeshift bassinet while we were evacuated from Redding. It felt like we were going from one terrible situation directly into another, so celebrating our discharge felt a little bittersweet.
The day we were discharged, our super close-knit group of friends from Redding had all evacuated to Sacramento and were meeting at a coffee shop near the hospital. Our first stop out of the hospital was to go to a coffee shop to see familiar faces that we love and introduce everyone to Lily. We spent the next week in Davis, camping out at Jeremy’s mom’s in a wild haze of new parent sleepiness, mixed with the fear of losing our home and every important personal possession we owned. The photos we were seeing on social media seemed straight out of a movie. It didn’t feel like real life, and by now we had experienced so much trauma in the last 3 weeks, that we were completely numb and it just didn’t feel real. After a few days, the fire was partially contained and its threat to Redding had decreased as it was now heading in a different direction. We waited a few days to go back home, to try and let some of the thick smoke clear out of town.
When we got back to Redding, our place was untouched but it was a really somber drive home. The closer we got to town, the more decorated each overpass was with signs of thanksgiving and high praises to all the first responders that had helped our town and saved so many houses, although there were many that weren’t nearly as lucky as we were. The Carr fire had taken out 1,600 buildings and homes and was the 7th most destructive wildfire in California’s history. Outside looked like scenes from a movie. It looked like the apocalypse had happened. Our backyard and patio were covered in a layer of ash and soot. You couldn’t go outside without wearing protective breathing masks. Being that Lily had spent the first 3 weeks of her life in the NICU due to oxygen issues, we hibernated inside all summer long. We didn’t really go out and I spent the remaining 2 months of maternity leave, snuggling with Lily, working on our breastfeeding journey, and making sure we kept this tiny human that came with absolutely no manual – besides “feed every 3 hours, change her diaper, and what to do if she gets a fever.” That’s it – 3 weeks of intense hospital interactions and only a 3-step manual once we went home.
Lily’s first year of life has been full. We go back and forth to UC Davis about once a month to meet with specialists for Achondroplasia, mostly routine, but some follow-up from her NICU stay. Every doctor we’ve met, she has surprised with her progress. Everything from the NICU has been completely resolved. There were some expected developmental delays from some of the medications she had to take in the NICU, but she is on the early side of the spectrum for every developmental milestone for achondroplasia thus far. She is determined and when she sees something she wants, she goes for it. There is no stopping her.
We are so thankful for our community that has loved and supported us through Lily’s first month and year of life. We are so thankful for the prophetic and if it wasn’t for the prophetic word we got when we were pregnant, telling us our miracle was going to get a miracle, it probably would’ve been a lot harder to keep our peace. Whatever you find yourself facing, I pray that you are encouraged to be brave and strong, that you have encounters with the Prince of Peace, and that you have a community around you that loves unconditionally, because if I learned anything this year – it’s that we all need a village.