Can you tell us about your NICU experience?
Our beautiful baby girls were born 10 weeks early after they survived TTTS (Twin-to-twin transfusion syndrome) and mono/mono twin pregnancy. After spending 4 weeks at Anne Arundel Mother/Baby unit in the comfort of my belly, they wanted to join the fun too and arrived quickly and ready to take on the world. We have two older girls with “regular” pregnancies and births, so NICU life was completely new for us and something we never expected to endure. While being completely new to the NICU life, we also were in complete denial of what was actually happening and how sick our babies actually were. Luckily, we had the best nurses and doctors on our side to lead us through life in the NICU. Within the first week, I discovered I had Postpartum Preeclampsia and the NICU/Mother Baby Unit was extremely helpful in ensuring all the milk I was pumping was getting to our babies while I was back in the hospital. After 6 long weeks of driving back and forth to the NICU everyday an hour and a half each way, we were able to first bring home our daughter Olive home and 3 days later Lucia. They came home on monitors and our team ensured we were set up with future doctor appointments to proactively protect the future of our girls.
What was the hardest part about your NICU stay?
The hardest part of our NICU stay was absolutely all the monitors and noises. Everything sounded like an emergency; however, our nurses/doctors were always there to ensure they were ok and show us what we could do to ensure they were ok as well. We also could not spend as much time with them daily as we lived far and have a 5- and 7-year-old at home who needed us too. I had been away from them for 4 long weeks while I was in the hospital (during covid so I was not able to leave my room without an escort and children were not allowed in the hospital) keeping the twins safe so it was very difficult feeling like I still had to “pick” who to spend time with that day.
How did you care for your mental health while your babies were in NICU?
To be honest, I did not do much; and I really needed more help with this. I just kept going and still feel like I haven’t stopped. I have a wonderful, supportive husband who helps me talk through my thoughts. Their pregnancy, birth and postpartum period was very traumatic for all of us and I’m still figuring out how I will process all that happened. I am so very grateful for their health and how far they’ve come, which helps me get through the processing of the past year.
How would you describe the period immediately after your twins were discharged from the NICU?
Hectic! While they were on such a great schedule from the NICU, I was still constantly questioning the decisions I was making. I will say having Infant/Toddlers come as quickly as they did was extremely helpful. Also, Tiffany Wilson, our Family CRNP, helped me feel super confident in their health. She helped me see that just because I don’t know everything going on, I can figure it out with problem solving and others help!
Do you feel like you had all of the resources that you needed both while your babies were in the NICU and after they were discharged?
To be honest, no. It was all so new. I feel like Anne Arundel Mother/Baby unit helped me prepare as much as possible however, I feel like I was the exception. The nurse that checked me into the hospital had worked there for a very long time and suggested I take a tour of the NICU since we would be there, and things fell more into place from that one interaction. But if I had never met her, I don’t think I would have been as nearly as “prepared.” My biggest problem was just my complete lack of knowledge on if they would be ok. I was so worried about what that meant and what “ok” meant. One thing that desperately needs to be added to the NICU is a family therapist to help people process this information that they are taking in. There’s nothing like starting off your baby’s life fearing for it. Especially after being blessed with two perfect pregnancies and births. I constantly would say “I don’t know how people do this if this is their first experience having kids!” This time in our lives have such high expectations and for them to not go our way is traumatic. The year of their birth is coming up and I’m having such PTSD with it. Luckily, I feel like I have the tools myself to help deal with it. But it’s still very hard.
What advice would you give to parents who currently have a child(ren) in the NICU? Do you have any tips that they can use to stay organize after discharge with all of the follow-up appointments/therapy sessions?
My advice would be to take it day by day. One day could be horrendous and the next you’re getting discharged. Taking it day by day helps to compartmentalize the crazy feelings and expectations that you will have. Also, I would say take all the things. Say yes to Infant and toddlers, to lactation and OT, etc. The more the merrier in my opinion. I found that having all the extra support whether it be by a professional or a product really helped me to say “ok, I’ve got this with the help of “such and such”. Finally, ask questions. I was nervous at first to ask allllll the questions, but it really made me feel so much better to know what was happening, what that noise meant or that sticker did. It also helped me better care for my twins once they came home because I knew what to look for and felt confident in myself.
Is there anything else that you would like to share?
Ask the questions. It really does help you feel more in control of what’s happening to them. Also, most of their health questions still come up through other follow up doctor appointments. So, if I didn’t ask questions, I don’t think I would have known how to best care for my babies at their future appointments that I’m dealing with now. I also felt more comfortable in what was happening by asking what was happening!
