This was my experience following my daughter, L's hospitalization. She was born with gastroschisis. She spent a total of ninety-eight days in the hospital and hit many complications along the way. Thankfully, she has been home with us and is a happy and healthy baby.
What can I possibly say that could express even a fraction of the gratitude my husband and I have for those who saved her life numerous times and helped get her to where she is now? There are simply no words. I am eternally grateful for every single one of the nurses, doctors, respiratory therapists, social workers, physical and occupational therapists, housekeepers, Ronald McDonald staff, volunteers, and the countless others that were involved in L's care.
As a former PICU nurse, I was all too familiar with the lines, tubes, and monitors attached to our brand-new baby girl, as was my husband, who is an emergency medicine resident. We spent the last 20 weeks of my pregnancy preparing for the journey ahead, or so we thought. What we learned is there is no way to prepare for the heartache and challenges that go along with having your baby in the NICU. However, certain individuals will carry you through on your darkest of days. I would like to take a moment to recognize those individuals.
Megan Nielsen was the nurse who admitted L to the NICU in the middle of the night following delivery. I could tell within seconds that Megan was someone I trusted to take care of my daughter. She has a warm and empathetic demeanor, but more importantly, she is clinically competent and was quick to respond to several emergent situations L presented her with.
I didn't get to hold L until day ten of her life, after her full closure surgery. It was torture. All I wanted was to snuggle her close. I remember coming down to the NICU the night of her closure surgery to check on her. To my surprise, Megan asked if I wanted to hold her. I didn't know that was an option since she was still intubated, and I was a little hesitant as I didn't want to cause her any harm or discomfort. Megan insisted it was okay. She rearranged all the furniture and medical equipment in the room and gathered several nurses to help with the lines and wires and carefully placed L where she belonged, in my arms. Needless to say, I was spilling tears of joy. I will never forget that moment and will cherish it forever. Thank you for making that happen, Megan.
Megan is the kind of nurse that goes above and beyond her job description. She takes time to do little things that meant the world to me as a parent. She would always leave little notes from L's perspective about how her night went. I have kept each one of those notes and they are in L's NICU book. Megan helped me decorate the room to make it feel homier. She made holiday crafts out of L's hand and footprints. On New Year's Eve, she made L a sparkly crown and gave her infinite snuggles, so she didn't have to ring in the new year alone. She gladly took my 3:00 AM phone calls, and never got annoyed by my constant questions or worries. She would frequently leave me notes to read on the Nicview, as she knew I would check on her throughout the night. No mother should have to leave the hospital without her baby. It is one of the worst feelings in the world. However, I always slept a little bit better when I knew Megan was caring for her overnight.
Susan G was the nurse caring for L the day she had a bowel perforation and required emergent surgery. Thanks to Susan's keen assessment skills, frequent monitoring, and attention to detail, she realized the perforation had occurred within 15 minutes of it happening, and thankfully L did not clinically deteriorate.
As a nurse, I know how hard challenging it is to get a patient ready for an unplanned surgery. You have what seems to be an endless number of tasks to complete in a very short amount of time. Susan never let that show. She was there for me in every way I could have needed her. She offered a hug and a shoulder to cry on. She got the Chaplin to the bedside before L went off to surgery. It was one of the most difficult days of my life. Susan gave me a prayer shawl that she had hand-knitted herself. She wrapped it around me and said to think about it as a hug you can wrap around yourself whenever you need to. I still have that prayer shawl in my house and I think of her often. That day was a complete blur, and this quote could not be more fitting for my experience with Susan, "people may forget what you say, but they will never forget how you made them feel."
Throughout L's hospital stay, I spent nearly all day, every day in the NICU. It is hard to maintain your sanity in a hospital room all day, but it is equally hard to leave. However, whenever Susan was taking care of L, I was much more likely to leave for a few hours to take care of myself. I knew Susan would hold, read, sing, or play with L while I was away and that meant the world.
Tanya Gruening was the nurse caring for L on the day she got intubated. Over the first two days of life, L was having breathing issues. Tanya was calm throughout these episodes and moved quickly to get the team in the room when needed. Tanya was upfront and honest with me that based on her labs, the team would likely decide to intubate her. I broke down in tears for what felt like the millionth time in L's short life. Tanya was there to comfort me. She let me cry on her shoulder even though I had just met her a few hours before. She reminded me it is better to intubate in a controlled environment rather than an emergent one.
On top of her clinical expertise, she was a patient advocate. There was a lot of debate over what the best plan was to feed L because there was no right answer. Tanya knew L and me better than any members of the care, so her input was crucial. I had always wanted to breastfeed but realized with the circumstances that might not ever be possible. L struggled with tolerating feeds for a long time. I had all but given up on the hope of breastfeeding her when Tanya encouraged me to keep trying. I'm happy to share I have been exclusively breastfeeding for the last six months. I am so thankful she encouraged me not to give up.
There were many days where Tanya was just as much my nurse as she was L's. I have dealt with underlying anxiety for quite a while, and it exploded when L was in the hospital. On top of my anxiety, I felt very isolated. Although I have a supportive husband, caring friends, and a fantastic family, the days got long and lonely in the NICU. Our family visited often, but they live out of state. Tanya was my saving grace. She listened to my fears and frustrations, laughed and joked with me, and provided advice and encouragement when I needed it most. I confided in her when I felt I needed to see a psychiatrist and consider anti-anxiety medication. She normalized my feelings and reminded me there is no shame in treating mental health and I needed to be at my best when I brought L home. I am forever grateful for the top-notch family-centered care that Tanya provided to L and me.
The quality of care each one of these nurses provided was second to none. As I mentioned, I am a nurse myself, and going forward I will strive to be as great of a nurse to my patients as Megan, Susan, and Tanya were to L, my husband, and me.
Jill Palmer with social work is a saint. L had an extremely rough first couple of weeks of life and I couldn't leave the hospital. Jill arranged for us to have a room at the Ronald McDonald house every night for fifteen days in a row. It meant the world to be able to get some sleep and take a shower without having to be too far away from the NICU.
Jill checked in with me frequently throughout L's hospitalization. She listened to my laundry list of worries and offered advice and resources when needed. Jill helped me get in touch with a therapist who specializes in working with NICU moms. She often reminded me that I have to take care of myself in order to take care of L.
There was a time we thought L would end up with home TPN or a G-tube. Jill was there to provide insight on what assistance would be available should that be the case. As the medical bills piled up and I was off work, she helped us apply for Cradle of Hope which provided some rent assistance. I am certain Jill spent much more time talking with me than I was allotted, and I am so grateful for all she did.
Dr. Andrea Lampland was the neonatologist on service the week L was born. She went above and beyond the call of duty so many times I lost track. From day one, she built a trusting relationship with my husband and me, and I could see that she truly cared. Without her clinical expertise and medical decision-making, things could have turned out very different for L.
Dr. Lampland respected the fact that my husband and I were in the medical field; however, she never assumed we understood all that was happening. During rounds, she took the time to answer our excessive number of questions. When L hit complications, she was empathetic, but also upfront and honest with us that her road had gotten longer and more challenging. While this was hard to hear her transparency was greatly appreciated. She spent a significant amount of time in the NICU discussing any and all of my what-ifs and never made me feel foolish.
Dr. Lampland came in on her days off to be involved in care conferences for L. She collaborated with colleagues and discussed the different options. She gave me her personal cell phone number and email address and said I could reach out to her at any time. I contacted her several times when she was not on service to discuss L's status. She was always happy to weigh in or talk directly with the doctor that was on service.
Several months after L was discharged, she got sick with vomiting, diarrhea, and a fever. Given her complex history and my anxiety, I instantly panicked that something serious was going on. I reached out to Dr. Lampland via text and she immediately called me to discuss. She provided the reassurance that this was likely just a GI bug, and that reassurance was exactly what I needed. Thank you for everything, Dr. Lampland.
I can hardly believe L is about to turn one. I often find myself in her room at night just watching her sleep, in awe of all that she's been through. I shudder at the thought of what could have been. There were many days I did not think L would survive or lead a normal life. Almost a year later, she is not only surviving, but she is absolutely thriving, and it is all thanks to the wonderful team at Children's Hospital St. Paul! Looking at her now, you would truly never know what she has been through.
From the bottom of our hearts, thank you for giving us our daughter.
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Team Members honored with this DAISY TEAM Award:
Andrea Lampland, MD
Megan Nielsen, BSN, RN
Tanya Gruening, BSN, RN
Susan Grefe, BSN, RN
Jill Palmer, MSW, LICSW