The NICU Experience – Premature Twins Born at 33 Weeks Part 1 of 2

The First Four Weeks

If you haven’t read my other blog posts, Grayson and Sawyer were born one day shy of 33 weeks. I was in the prenatal unit for six weeks before they were born and then we spent seven weeks in the NICU. I am going to try to be very candid about our experience in the Newborn Intensive Care Unit (NICU) and I am going to split it into a two-part series in order to fully share our story; the first four weeks and the last three weeks.

The NICU was by far the toughest time of my life. When I look back at pictures from that time, they make me wince. It was difficult to look at my newborns the first month in the NICU because it broke my heart every single time.

The NICU, just like life, has its highs and lows and progresses in stages. We were very lucky to be in one of the top NICUs in the country; they have done groundbreaking work in helping micro-preemies survive. We had some of the best nurses and best doctors taking care of Grayson and Sawyer and the standard of care was beyond anything we could have imagined.

The NICU became our family. There was always someone there to help ease the pain and the overwhelming feelings that were present the entirety of our stay. They advocate for parents and they love on your children with a meaning and passion I have yet to experience elsewhere. These are some of the kindest and purest humans you could ever meet, and they are doing a job that parents can never repay. I feel indebted and I presume that will be a constant for the rest of my life.

Every person has a role and they go beyond what is expected. They nurture you (the parents) as much as they nurture your babies. When I think of the NICU, I think of Grayson and Sawyer and then I think of the staff. The staff who relentlessly worked around the clock to guarantee the best outcome possible.  I think of the doctors who would speak to us and check on our babies at every hour of the night. I think of the nurses who would move their schedules around and take extra shifts just so they could keep caring for our babies. Angels put on earth to literally save your children’s lives. Not only save them though, but do whatever possible so that they can have the best chance at health.

If you are healthy you can face adversity in ways you simply can’t otherwise. Health is of the outmost importance. I think every parent can agree with this, when you bring a child into the world your number one concern is their health. You know deeply that you can face almost anything if your children are healthy.

When we first got to the NICU both babies were incubated and were being fed through feeding tubes through their mouths. They had IV’s, monitors to take their blood pressure, monitors to measure their oxygen levels, and monitors to check for apnea. The room lights were basically off to recreate the womb and everyone spoke in a whisper. There were nurses with them at all times in the beginning. Every two hours they had a routine check of all their vitals, and then they were fed by hanging bags through their feeding tubes. The first day and a half they were fed donated breast milk and from then on my breast milk. A doctor came by to check on them twice a day, unless they had to come again for some reason. Diapers were changed every hour and different specialists would check on their stats daily.

The babies had a daytime nurse and a nighttime nurse. There was a board with all the information for the day: the nurse, the doctors, the schedule, and any exams or screening that had to be done. They also kept track of baths and any medications or vitamins that would be administered.

The NICU works on a methodical and scientific system. Every possible detail is thought about and every minute is accounted for. At first it is a lot to take in. There is a lot of learning to do, but the more time you spend in the NICU, the more you ask, the more you pay attention, the more it all starts making sense. You understand that there is a purpose behind the structure and the systems, and you get used to it. You rely on it and it eases your anxieties and your fears because you are as informed as you can be.

At the beginning the boys were watched constantly. There was someone always in the room, and it seemed like something was continually happening. As the weeks passed though it lessens, and you start feeling like there’s progress.

When your child is born premature every day makes a huge difference. We were told that a day longer in the womb is approximately three days less in the NICU. The boys were not micro-preemies but they were born very early. A baby is considered premature if they are born before 37 weeks. Although not apparent to most people, major development occurs in your last months of pregnancy. The brain continues to develop months after a child is born at 40 weeks, so the risks are high for any premature birth. The lungs mostly develop in the last weeks of pregnancy, which is another risk. Grayson and Sawyer thankfully both weighed almost five pounds, but they also lost a significant amount of weight after birth.

The major concerns were their lungs, their hearts, their brains, bilirubin, head shape, and the risk of illness. Grayson and Sawyer are identical twins and their stats were usually identical as well. They both were at risk for the same things.

The top 5 Risks for Grayson and Sawyer:

APNEA – When a baby is premature their lungs are underdeveloped and they can stop breathing for 15 to 20 seconds at a time. This can occur for the first three months of a premature babies life. Weight and the amount of days premature play a role in this.

Grayson and Sawyer both had apnea. They were given caffeine right after they were born to stimulate the lungs so they could continue breathing. At the beginning they had apnea regularly and they received a few doses of the caffeine which lasts ten days after it is given. When babies have apnea the monitors start beeping and the nurse rushes in. They rub their legs or their belly and that usually stimulates the baby to start breathing again. If that doesn’t work then the nurse will use an oxygen mask and manually pumps some air and in most cases that will get the baby to resume breathing.

This happened in our room for the entirety of our stay. Every time that monitor beeped, we would rush to Grayson and Sawyer and one or two nurses would run in. It was terrifying to know that they could just stop breathing. This knowledge made it very difficult for Garrett and I to leave the boys. We always wanted to be there or have a family member watching. We were scared that if the nurse was helping another baby they were assigned to that our babies would go unnoticed. So that is exactly what we did, we always had somebody with our babies. Garrett and I slept every single night facing the monitors so we could each have an eye on them.

BRADYCARDIA – A lot of times because of the apnea a premature baby will also have bradycardia. This means that their heartbeat slows to lower than 80 beats/minute. This slowing of the heart rate can occur after an apnea episode, because of the feeding tubes, or reflux, and the boys met the criteria for all three.

It is very scary when this happens but once you learn you get up and you act. You rub their bellies, their feet, watch the monitor and somehow it does get easier and it begins to occur less frequently.

INTRAVENTICULAR HEMORRHAGE – Another common complication with a premature baby is bleeding in the brain. There are four levels used to categorize the bleeding. Some of the bleeding is so small sometimes that they don’t even consider it a type 1 hemorrhage. The cause of the bleeding is most commonly found in premature babies that have Neonatal Respiratory Disease, unstable blood pressure, or other medical conditions, but it can also occur in a premature baby who is otherwise healthy.

Grayson and Sawyer were born too early for them to immediately undergo ultrasounds of their brains. It took over a month before the exam was done and I will share more about this in my next blog post about the NICU. This was something we knew about since before having our babies when I went into preterm labor and it was looming over us for quite some time. A level 3 or 4 hemorrhage can mean that the brain doesn’t develop properly and a lot of other major complications. I carried this fear with me, and I will mention that it felt like it broke me several times. The fears of what it could mean were unbearable.

BILIRUBIN – Commonly what results in jaundice is an excess of yellow pigment in red blood cells. This is common in a lot of babies and especially breast-fed babies. If you live in a warm climate, they usually suggest laying your baby in sunlight or they use a warm lamp in the hospital. Usually this takes some hours and it is better. For premature babies their liver is not strong enough to be able to get rid of the bilirubin and it needs to be treated. Severe jaundice can mean that there is another underlying health condition, or it could lead to severe brain damage if not treated.

I remember after the first couple of days in the NICU that I couldn’t help but see that Grayson and Sawyer were orange. Especially Grayson; he was very orange. The doctors measured their bilirubin through a blood test and sure enough they were jaundice.

Grayson and Sawyer had special lights above their incubators for three weeks straight. They had patches to protect their eyes from the light and it was one of the hardest parts about being in the NICU. I already felt like they weren’t really mine. I felt like I had to ask permission for everything. I couldn’t just change them, I couldn’t just hold them, I couldn’t just feed them. Everything was a methodical process and someone was always there watching me or teaching me a better way. Now this was magnified considerably. I had to put my hands through the incubator and only touch them where I could reach. I couldn’t get them out and hold them for longer than fifteen minutes and only a couple of times a day and the eye patches would fall off nonstop so if I ever left the room while Garrett was at work and the nurse was helping the other baby I would walk back in the room to a screaming baby because the very powerful lights were beaming in their eyes. This would cause Garrett and I to panic and we would spring to the room the moment we heard the cries.

At first, we were told they would only need a few days of the lights but for 21 days we would pray that the bilirubin numbers would lower and they wouldn’t. It debilitated our spirits and our positivity. In the end we were completely fed up with it. We were so tired of not being able to talk to our babies, to hold our babies, to give them the security and nurturing that only we could give them. Instead we were seeing them through an incubator on display with powerful lights above them. It felt like a science experiment was being conducted on our babies. If you ask my husband and I, this was by far one of the most intense parts of being in the NICU.

HEAD SHAPE – Since the babies in the NICU are laid flat on their backs to prevent the apnea, reflux, and other things, the babies often develop a flat spot in their heads. Their heads have a flat spot in the back from spending too much time laying down. Grayson and Sawyer spent almost the entire first four weeks of their lives laying down without being held much so they were at risk for it and we were going to have to work on it once they grew a little more.

RISK OF ILLNESS – The biggest threat to Grayson and Sawyer’s lives was getting a common cold in the delicate and fragile state that they were in. A cold could kill them. This added fear and a lot of anxiety. The NICU had a regimented protocol for handwashing, cellphones, and visitors. Every time you entered the NICU your phone went into a machine to be sanitized and you had to wash from underneath your fingernails all the way to your elbows. There were timers to ensure you washed for two full minutes each time. Jackets and coats were not to be worn inside and besides a cellphone you could not bring anything inside with you. Visitors were encouraged to wear a robe if they held a baby. No person under the age of 14 could go inside of the NICU. If you spoke too loud there would be a light that would turn red as a warning in your room so that the environment could stay as calm and quiet as possible.

Honestly visitors were basically discouraged because it was a threat to the babies and the parents. If Garrett and I were to become sick we would have had to leave the NICU and wait 14 days from the day symptoms appeared. In other words, having visitors was hard. I know that was difficult for people to understand; our people wanted to support us and wanted to see the babies but it really put them at risk. It was also a very difficult place to have people in. I was pumping nonstop around the clock, every two hours. By the time we had washed all the pumping equipment and used the bathroom and talked with the nurses it was almost time to do it all again. Having people there when you pump as a new mama, completely overwhelmed and absorbed by the livelihood of your newborn children, was pretty stressful to say the least. Although sometimes it was lonely, the reality was that Garrett and I didn’t really have the capacity to socialize during that time.

While we are on the topic of breastmilk,  breastfeeding and producing milk for two babies was more than a full-time job. I was determined to give Grayson and Sawyer their best fighting chance. I had failed them not being able to carry them for long enough, but I wasn’t going to fail them with their nutrition.

A lactation consultant came in to the NICU on our first day and she spoke to Garrett and I and told us that the way to guarantee that I would produce enough milk for two was to take it like a military mission. Pump for twenty minutes on each breast, use heat pads while you pump, massage your breast, and make sure you are consistent and don’t wait longer than the prescribed two hours in between pumping sessions. Basically, I was on Grayson and Sawyer’s feeding schedule. I was pumping every two hours around the clock. Garrett would wash all my pumping equipment and get me my heating pads and we would sit there as I pumped for twenty minutes and then he would wash all the equipment and would walk me to the bathroom outside of the NICU. The bathrooms upstairs by the prenatal unit were mostly used by staff and were much cleaner, so we always walked upstairs. Even at two or four in the morning. He would get me water; we would check on the boys and try to sleep for twenty or thirty minutes before we did it again.  

One of my favorite nurses was a nurse who became Grayson and Sawyer’s primary nurse and was also a lactation specialist. A nurse who swapped her entire schedule so that she could be with Grayson and Sawyer every time she worked and who spoke to my mom and Garrett about me needing to sleep. She kept warning me that I couldn’t continue at the pace that I was going, and I didn’t listen. I wanted to be present for every second, I didn’t want to miss a single checkup, or a single conversation, and my mind could not slow down. Until one morning at around four am I woke up to pump and I felt like I couldn’t. I did it and then told Garrett that I felt like I was going to faint. During the next pumping session at six in the morning I couldn’t pump. I couldn’t move. All I could do was sleep. At 8 am when I woke up to pump again because I was so afraid of missing another pumping session, I felt the pain in my breast, and I had a fever. My breast had red streaks all over and it was painful to the touch. I pumped through the pain and went right back to sleep. Garrett called my doctors upstairs and they squeezed me in that morning. Sure enough I had mastitis.

Mastitis is a breast infection that feels like the flu. Thankfully now you can take the antibiotics and still feed your babies the milk. It was intense, but by the next day I was feeling better and two days later I was all better. It hit me hard and it hit me fast. I was so relieved to find out it was mastitis though because I was fearing that I had gotten sick and that would have been much worse.

I was just exhausted. The most exhausted I had ever been in my life. I honestly didn’t know how exhaustion felt until the NICU. I was power pumping and not sleeping. I was full of fear and most of the time trying to process more than I could even absorb. I was also recovering from my pregnancy and from delivering two babies. All while sleeping on a sofa without a bathroom or kitchen of my own.

Thankfully my people carried me through. My sister and my mom had a system and they made sure I had food for every single meal. They would swap their time in the hospital so I wouldn’t spend too much time alone while Garrett worked. My aunts brought me food or whatever I needed for myself or the babies. My aunt from New York would send me comfortable robes and pajamas to be in the NICU. My in-laws would bring goodies on the weekends and made me foods that would help with breastfeeding. My parents and sister would stay with Grayson and Sawyer while Garrett and I would have dinner outside of the NICU or when we went to get a hot chocolate.

My people, Garrett, they were there. Every step of the way. Even family not living in Alaska would reach out and send me encouragement. They were able to literally carry me while I fought for the boys and for myself.

The NICU is hard. It is your babies’ lives on the line. Nothing about it is easy. The constant worrying of the unknown, of the many conditions that your babies can have but haven’t been discovered yet can absorb you. You have a choice though; you can choose to be positive. You can choose to open up to your people, you can choose your mentality. You must fight, you must push through, you must deal with real fears, you must make tough decisions, but you also have clarity. You know what matters most and you push on. You can either try to go at it alone or you can team up with your partner and your people and fight the fight together. Each person providing something integral to the experience. The nurses and doctors too are there to fight the fight with you.

Try to live in light, hope, and love. Your attitude will affect this experience, and although it is hard you will grow in ways you will continue to see in years to come. As a person this will be an experience that humanizes you and awakens you to so many things. So mamas, if anything I hope you know that you can do this, even when you are breaking, even when it feels like you can’t possibly do any more, you will and it will be so worth it!