I feel really bad. I was keeping everyone who wanted to be involved, up to date with my and Emberly’s situation. And then, I kind of fell off the Earth.
I did my best to keep people vaguely involved through social media and photos but I haven’t written a blog post since discussing her birth story. To be honest, I think I began to feel a lot of pressure. It makes sense – I suddenly had an influx of messages – whether to my phone, or email, or facebook/instagram messenger. And I do greatly appreciate these gestures; people looking out for us, curious, asking questions, etc, but it did begin to feel a tad overwhelming. Long distance family would want answers that I’d have to help explain through a game of telephone between my immediate family to them. People I hadn’t talked to in the longest time would reach out and offer their prayers, asking “tiny” questions but I knew what they really wanted. And when shit got real with Emberly (not like it hadn’t already been real) my main focus became one thing: survival.
After discussing Emberly’s birth story, life in the NICU left it’s “honeymoon phase” as my friend Hannah (a former NICU mom) referred to it as and the depression and anxiety set in. It quickly hit me how challenging and demanding this part of my life was going to be. And it wasn’t a normal situation whatsoever. I have a toddler at home who had no idea he had a baby sister in the hospital – and I’m sure if he even could comprehend that, he wouldn’t have given a crap anyway. Darius’s work schedule, although lenient, required him to use his *ten* paternity days while Emberly was in the NICU which left me feeling stranded when he went back to work. Darius’s mom – our saving grace – came to visit when Darius went back to work for three weeks. She was there to help ease the stress of having to take care of Lincoln, ensuring he didn’t feel neglect, all while visiting Emberly for hours each day and maintaining a household. I don’t know what we would have done without her. Lincoln would have ended up in daycare, I’m sure, which would have been money out of our pocket we just didn’t have. I can speak for Darius and myself when I say that our family and friends have been our life preservers through this process.
Having a child in the NICU is almost too challenging to explain. You really only “get it” if you’ve done it. It’s hard enough to leave the hospital without your baby after delivery. It’s even more difficult when the pregnancy was ripped from your fingers long before it was supposed to be over. Your body is adjusting; confused and uncertain. I specifically remember two days after delivering Emberly, feeling her kick inside me. Doesn’t make sense does it? It’s obviously impossible – she was here now – but my body wasn’t ready. But beyond the NICU challenges and your body adjusting, It’s even more of a difficult process because you have to ask yourself “what is my point?” I can’t hold my baby when I want. I can’t breastfeed my baby. I can’t have that bond with my baby like I normally would. I felt like as positive as I was trying to remain, my thoughts were filled with a bunch of “I cant’s”. So, what did I do? I pumped. Every three hours from the moment a hospital grade pump reached my hospital room, I pumped. If I couldn’t do what all the other “normal” moms were doing on my labor and delivery floor, then I was going to pump. I was going to make sure I provided my baby with the one thing that was ME; that no one could replace or replicate.
And hear me out; I am a strong advocate for fed is best. Lincoln used formula all through his first year. But with Emberly, I NEEDED to be able to provide her something that came from me. That I could show up with everyday at the hospital to provide for her. So, over the next 8 weeks, I pumped every three hours. Yes, that means in the middle of the night I pumped. During the day, I pumped. I had alarms set on my phone to remind me that it was time to pump. And over the course of 8 weeks, I produced so much milk that we had to buy a deep freezer because ours filled up. And when Emberly was transferred from the hospital at eight weeks to Kennedy Krieger, she was moved with 95 bottles of frozen milk. Emberly was on donor milk for only her first two days in the NICU while my milk came in. So, was in successful in that specific journey? I say yes and I proudly pat myself on the back. Anyone who has pumped knows how miserable it truly is.
I would visit Emberly every single day for 3-4 hours. During that time I would help with her “cares”, hold her, cuddle her, sing to her, rock her, take photos with her and pray for her. In the NICU, Emberly received “cares” every three hours. “Cares” cover these basics: feeding, body temperature, diaper change and weight of diaper, blood pressure, blood pressure cuff change of placement, outfit change if necessary, heart/lung check, stomach measurement and head measurement, weight of baby (at nights only). I enjoyed being a part of the cares. It was another part of Emberly’s daily routine that I felt like I could be apart of and start to bond with her. When I missed a cares, I found myself to be very upset and being late for cares made me very anxious. It was like the one part of my day that made me feel happy. Besides sitting and holding her, cares was our only big source of interaction. As time went on in the NICU, cares kind of became my job. The nurses become comfortable and even encourage parents to take control of cares and do as much as you are comfortable with.
Our nurses were great and being there as much as I was, you begin to find your favorites and get excited when you see them multiple days in a row. Often our nurses told us that Emberly was best dressed or that they would argue about who gets to hold her next when Darius and I weren’t there. It’s these little things that made the NICU bearable. Also, our doctors and nurses from my surgical team would stop by here and there and the times I happened to be there when they stopped by would almost bring me to tears. I feel such an incredible bond and family element with them, that seeing them unexpectedly always brought so much joy to my day.
And then there were the times in the NICU that I would sit in there and cry. Sometimes it was the mounting pressure of everything. I still often believe that I haven’t had time to process everything that’s happened since December when our world turned upside down. Sometimes I cried because no one would leave us alone. What I mean by that is the doctors and nurses and researchers and specialists coming in and out of our room constantly, although there to help, but made me feel incredibly irritated when I just wanted time alone in silence (minus the never ending beeping of the machines). Or, the constantttttttt stream of phone calls I did (and still) receive from doctors, specialists, insurance, billing, social workers, etc., regarding Emberly’s case. I just wanted them to STOP. It was always so tempting to hit ignore and send each phone call to voicemail but I knew I’d have to call back eventually and that just made things worse in my mind. Often, I would close the curtain and shut the door to Emberly’s NICU room, which was normally a sign that I was pumping, but sometimes instead I would sit in the rocking chair and hold her and sing her song quietly and gulp down my coffee while binging m&m’s.
So, overall, what did I learn? I learned that raising a child really does take a village and to never feel ashamed to ask for help. I learned that I am so, so much stronger than I thought I ever could be. I learned that being a parent of a preemie who has a long NICU stay is not for the faint of heart. It takes an enormous amount of dedication, time, love and patience. It requires your full, undivided attention and a ton of understanding.
A NICU parent will never forget the way their tiny baby felt in the palm of their hand or how their skin felt sticky and tacky because of all the humidity from the isolette. A NICU parent will always remember how their first look of their child was seeing them covered in tubing, wires, an NG tube and a CPAP machine. NICU parents will never forget the feeling of actually not wanting to go to the hospital to visit your baby, but feeling utter bliss once you’re there. NICU parents will never forget the little milestones – like weight gain, breathing on their own, their first bottle, their first bath or first time being held. I will never forget any single moment, sensation, emotion or feeling from our time, our story of our eight long weeks in the NICU.