Caring for Preemies in the NICU and Beyond

 Toward the end of my third trimester, there was some evidence of twin twin transfusion syndrome. This in addition to a sudden increase in my blood pressure meant that our twins had to be delivered 6 weeks early. They were 4 pounds when born and had to immediately go to the NICU as they needed help breathing, eating, and maintaining their body temperature. To leave the NICU they had to be able to do all of these things on their own. Seeing your baby for the first time with all of the wires attached to them is hard, as is learning how to care for them. 

Our boys were in good hands in the NICU of a children's hospital, and their doctors reassured us that they were doing well, in spite of the wires we were seeing. This meant that while we were worried at times, we did not have many worries. 

I was in the hospital with them for the first week, and it was a hallway walk and an elevator ride away to my babies. My husband stayed with me in the room, and there was a pull out couch he could stay on. We wish we would have brought him some bedding from home as he was freezing and could not sleep well. He had a sheet, and a light blanket provided by the hospital, but the room was really cold. 

During the hospital stay, we could see our little ones often. While I was recovering from my c-section, my husband learned about when the doctors rounds were, and about the times the nurses would care for our babies. Around these cares, we could hold our babies and learn to care for them. We made a point to be present for all of the doctor's rounds so we could learn about the boys progress and ask questions to the team of doctors responsible for their care. My husband even managed to become an expert at changing their diapers before I could even leave my room, as the nurses taught him how and would help him if he needed it. He was even the first to feed our feisty little Ne Ne (Knee Knee). We benefited so very much from the programs and our boys stay in the NICU.

Benefits

Baby Bahubali

1. Our boys were on a schedule from the moment they were born, and came home with one. They were changed and fed at 8 AM, 11 AM, 2 AM, 5 PM, 8 PM, and 11 PM. One nurse was assigned to them and they were used to taking turns. 

2. We could sleep. Our boys were stable and we could go home and sleep at night once I left the hospital. 

3. The boys had around the clock care from the most experienced and loving nurses and doctors, and we could call them at any time if we needed reassurance.

4. There were classes on car seat safety, and child development. 

5. There are programs for NICU families that include everything from reading to community activities that bring parents together. Our boys library started in the NICU, we were given books and something to do while we sat with our babies.

6. I had access to lactation consultants that helped explain how to use a breast pump and breastfeed, and they were around daily to help answer any of my questions and help problem solve issues I faced in this process. There were also lactation rooms where you could pump if needed.

7. The NICU also had food passes for mamas, so I did not have to leave the hospital for lunch, and had one less thing to think about. 

Caring for Our Babies in the NICU

Ne Ne

1) Our babies slept a lot so we would make an effort to go to all of their care times when they were kind of awake. After I was discharged we found that going back and forth to the hospital was too much on us (we also live in the NYC area, so doing anything here takes time and energy). We decided that since we were off of work we would go to the NICU every day for three cares, basically 8-9 hours. We would arrive in the morning for the doctors rounds and leave when our babies fell asleep after their 5pm diaper change and bottle feed. 

2) We did kangaroo care (which is skin to skin cuddles with our little ones). We held them as often as we could and would read to them as they fell asleep in our arms as we sat on the hospital rocking chairs. 

3) The boys had a rotation of very skilled nurses and we took the opportunity to learn from all of them. I struggled with paced bottle feeding, and was so bad at it, Ne Ne who struggled to drink his bottle would look at my husband like, "she has no idea what she is doing. Feed me daddy." He is still critical, but it is part of his charm. I am pretty sure his "ma ma ma mas" the first time I took him to a public bathroom, was more of him cursing me out in the only syllables he knew. Baby Bahuboli took longer to bottle feed as he needed the CPAP machine to breathe longer than Ne Ne. Once he started however, he was easier to feed. It took me until the second to last day before Ne Ne was discharged, after working with several nurses, before I felt confident feeding them. Each nurse has their subtle variations of paced bottle feeding technique. Learning with all of them helped me find the technique that worked best for me. 

The nurses also taught us how to diaper change them, tricks to prevent and treat diaper rash, and how to swaddle a baby. 

4) We had preemie clothes, hats, and swaddles ready for the boys when they could regulate their own body temperature. The clothes were too large for them at the hospital and they were only provided with a top no pants. Having some soft clothes from home was also a nice way to transition them with things they knew when they arrived home. We would also bring back their dirty clothes and wash them in the baby detergent we would use when home. 

5) Balance this time by giving care to yourself. Sleep at night, take time to process your feelings, as there are real challenges caring for preemies. I have heard of parents who have had to continue using a feeding tube after having brought their baby home, or having to feed their baby through their belly button. These challenges can be traumatizing and stressful. We had one of our babies with a much more mild bottle feeding challenge and it was not until I had him evaluated by a physical therapist when he was one year old and had this nice man say "I am sorry, that must have been really hard," that I cried. It was and I have just kept going without pausing to deal with those feelings. Suppressing them takes a toll. To be there for our babies we need to find ways to care for ourselves too. To emphasize how important this is, I recently heard a story about a dad who lost his job, so that when his wife had to return to work he was the only one caring for their baby still in the NICU. He stayed with his baby in the NICU all of the time, when his baby was home the man had to feed his baby through his belly button, and take him to doctor's appointments because of his child's heart condition. He kept pushing himself so much he ended up in the ICU from the exhaustion and trauma of the situation as his body just started to shut down from it all. 

Caring for Our Babies at Home

Photo by Laura Yost Photography

 We continued to follow the schedule our boys were used to, and followed all of the discharge instructions we were given which included a minimum amount of milk each boy had to drink per feeding, with one exception. We were told to only feed our boys for 15 minutes and then stop. We couldn't do this with Ne Ne or he would not get the calories he needed. It took us an hour to feed him. We bottle fed as we wanted to make sure they met their feeding goal. To do this with Ne Ne took a lot of patience. We would also play music to see which songs he would drink his bottle fastest to. He drank best to "Eye of the Tiger." So that became his feeding song, which always got me to laugh. The little guy had such a hard time that he would practice drinking in his sleep and then whimper. Ne Ne does not quit though, he will practice until he does whatever he wants to do and this was true for bottle feeding too.

Bahuboli had anxiety around passing gas, music is always a go to in our home. So we experimented with different songs and he was a big Bob Marley fan. "Don't Worry, Be Happy," was his go to gas song. It even helped calm him this winter when he struggled breathing when he caught croup. Music is so powerful, not just for our babies, but for us too. 

In addition to our use of music to get through the tough times, we kept our house between 68-73 degrees Fahrenheit. To warm and it increases the risk of SIDS, too cold and their bodies are working too hard to keep them warm. NeNe would also not let you put him down if he was cold so he kind of let us know when to check the temperature in the winter.

Infant nasal passages are really small and they tend to get stuffy easily. Running a cool mist humidifier in the winter helped, along with baby saline drops (By the way I learned from our night nurse that you drip them don't squeeze the bottle like we do for us adults as they can't handle it), and whatever tool you feel comfortable with to suction their nose when they get too stuffy. 

Ask for help, those early days are a blur, if you have anyone who can help ask while you can, get them involved in learning how to feed your baby so you feel confident leaving them in their care. This will allow you to take a nap from time to time or just do something that makes you feel you.