As a mother of twin micro preemies, we spent a lot of time in the hospital. My big guy, Big C, stayed for 91 days. My little guy, Little P, stayed for 93 days. No matter how long or short your journey, it is an experience that changes you. I’d like to tell you a little bit about our time spent in the NICU.
Before I start my post, I’d like to add a disclaimer. This is only my experience. Neonatal Intensive Care Units (NICU) range in size, configuration, and operation. There really aren’t any “typical” days. As you would expect, in any hospital situation, emergencies come up often. I hope I can just give you a glimpse into what it might be like as a parent of a child in intensive care.
A Day in the NICU
4 years ago…
After dropping my 2-year-old off at Grandma’s, I head to the hospital. Children under 3 years old are not allowed in the NICU. If they are over 3, they must have proof of immunization. It must not be during Flu/RSV season. At our hospital that starts in September and goes through April. My twins were in the NICU from May until August, and my oldest didn’t turn 3 until October. He only got to see his brothers through a glass window for the first 3 months of their lives. While this was extremely hard for my family, we had to remember those tiny and sick babies need all the protection they can get.
Once I parked my car, I walked down a long hallway. I carried a cooler, stocked full of pumped breast milk, and finally reached a set of double doors. I had to pick up a phone, identify myself by name and assigned number, then was buzzed into the NICU. Before going to see my babies, I set my cooler outside the door to their room. I headed to the sink next to the reception desk. As the sign above the says, I scrubbed my hands and arms to the elbows with soap and hot water for the required 2 minutes, making sure to get in between my fingers.
One more deep breath after drying my hands. It was time to see my twin boys.
In our NICU, there were no private rooms. Instead, there were large rooms that fit about 10 isoletes, or cribs. The rooms in the front of the hallway were for the sickest and smallest babies. As you move further down the hall, the rooms were for “feeders and growers.” Both of my twins were in room number 1, the most intense of “Intensive Care.”
The rooms were all kept dark and quiet, apart from the constant beeping of machines and alarms. I would go to my twin that was closest to the door, pick up the blanket that covered his isolete for a quick peak. I then did the same for my other twin, and then looked for the nurse. I’d give her my cooler of precious “liquid gold,” or breast milk. I had to label it with each babies name and date. Since my babies weren’t able to eat by mouth, I had to pump breast milk every three hours at home. Even if they weren’t home waking in the middle of the night like a typical newborn, I was still up. I pumped in their room, sometimes calling to check on them.
The nurse would tell me how they each did overnight, if they gained weight (in grams,) and if there were any concerns.
It was then time to do “cares.” I would reapply hand sanitizer, wipe down the thermometer, and get a tiny, tiny diaper from a drawer. I wet down a cloth to use as a wipe, since baby wipes were still too harsh for their skin. The thermometer cover on, I stuck my hands through the holes in the isolette (incubator) to reach my boy’s tiny arm. I took his temperature under his arm, steering clear of all the wires. His temperature was reported to the nurse, I wiped and returned the thermometer, and then got ready for a diaper change.
It was pretty tricky to do it through those holes. I was very, very afraid the first few times. Changing a diaper on a one pound baby is just scary. I worried about hurting him or moving him to much. They needed as little stimulation as possible those first few weeks. Remember, they were still supposed to be in my womb for another three months.
I eventually got better at diaper changes, but I’m not sure I ever got used to it. If it was more than just wet, it would get weighed.
During the first few weeks, my babies were too fragile to be held. Next, I pulled out the breast pump, closed the curtain, and pumped while watching my tiny little boy. I then cleaned my equipment, opened the curtain, and covered my baby’s isolette back up.
It was time to do it all over again with my other son. They kept the twins on different schedules so that I was able to do both of their cares. This was also helpful when it came time to do “Kangaroo care” with them.
“Kangaroo care” is the term they use when you hold your baby on your chest for skin-to-skin contact. Even though they were still hooked up to all those wires, holding them on my chest was amazing. They were so tiny, I tucked their little feed into my sports bra to keep them in place.
A Heart in Two Places
I would have loved to sit with my babies all day, but I had another child at home to think about. He was really still a baby too. So, after doing cares on my second twin, sitting watching him or reading to him for a while, I had to head home. I would pick up some empty milk containers and labels, say goodbye to the nurses, and try to get to my car before the tears came spilling down my cheeks.
My husband would go to see the boys after work. I would call our nurses every night for another report. Sometimes, I would even call in the middle of the night while I was pumping, as I mentioned earlier. The nurses were always happy to give a report at any time of day or night.
What I described above were good days. Actually a great days. Even though we had to leave our babies every day, they were still alive and getting great care.
There were many days that were a lot different. They were filled with terrible reports, discussions of surgery, and life or death moments. There were alarms, prayers, and many, many tears. The decisions seemed impossible, the outcomes unthinkable, and the pain unimaginable.
Living each day not knowing what the next will bring is very taxing emotionally. We were all raw and struggled just to make it through each one.
The End of the Journey
Even though our journey in the NICU lasted over 3 months, we were very, very lucky. We made it through!
There was heart surgery, intestine surgery, and eye surgery. The boys graduated from an isolette to a crib in the open air. They went from tiny special-made diapers to real preemie diapers to newborn diapers. We went from too many wires and tubes to count, to finally breathing room air and eating by mouth. From just diapers and blankets, the boys finally were able to wear real preemie clothes, which were still gigantic. I think that will always be my favorite memory. They finally looked like newborn babies. !
The NICU is truly a journey I hope you never have to experience. It is scary and overwhelming and sad and hard, but it can be full of hope and healing too. It has also taught me a lot about myself, and about the amazing compassion in others. So, if you, or someone you know, does have to make this journey, please know that you are not alone.