First, if you’re new, you may want to check out the older posts in this series.
Today we have a guest post by Emily of Life a Study! She’s sharing her experience with the NICU with us. Here she is:
The NICU smells like hand sanitizer. The lighting, the whispering, the constant sound of monitor alarms going off, and the barely-keeping-it-together parents blend together to make it feel like the twilight zone. I sat there in a wheelchair more than 12 hours after my preemie twins were born (via emergency c-section), meeting them for the first time through the plastic of their incubators. These were the children that I had longed for, begged for, prayed for, WORKED for. Years of infertility, a surgery, IVF and a high-risk pregnancy, and there they were…two tiny total strangers? Two total strangers with tubes and monitors and things that went beep. Was this a normal way to feel? Being a new parent is overwhelming at best, and premature birth by emergency c-section isn’t the best way to arrive at parenthood. So what do you do if your first job as a parent isn’t what comes naturally? Holding, bonding and feeding are replaced with watching, waiting and pumping.
My twins Gabriel and Beatrice were born at 33 weeks gestation. My water had broken a week earlier with no contractions, so they kept me in the hospital, trying to ‘keep me pregnant’, with the hope of getting me to 36 weeks. This threw my birth plan out the window and sent my midwife home. Exactly a week from when my water broke I started having contractions at 11 p.m. Around 1 a.m. I called a nurse, thinking I had eaten something that wasn’t sitting well (dumb I know but it just didn’t feel as bad as everyone had warned me) Turns out I was 8 cm dilated with an arm hanging out of my cervix. There was no other choice but c-section, and no time for an epidural. I would have to have a general anesthesia. I yelled our home phone number to a nurse to call as they rushed me down the hall to an OR. My husband and mom would arrive just in time to see them whisk the twins down the hall to the NICU.
So there I was 12 hours later, groggy, sore and high on morphine, meeting the great loves of my life. I just didn’t know it yet. At birth the twins did great. They were both good sizes for 33 weeks gestation — Gabe weighed in at 4 lbs 3 oz and Bea at 3 lbs 11 oz. Neither of them had breathing problems. In theory babies don’t learn how to suck until 36 weeks gestation, so like many parents of preemies, getting our babies nursing was going to be one of the biggest challenges. We were told that they needed to spend a couple of weeks in the Level 2 NICU, to monitor and make sure they were feeding well and gaining weight.
NICUs have a strict schedule, feeds every three hours (with a reminder to pump every three hours) with a diaper change and a weigh in before the feed. Twice a week they work a bath into the schedule. They want parents to be as involved as possible and it is a wild learning curve. Not only are you learning how to handle your too-small babies, but you also learn what every monitor does, what every alarm means, every nurse’s name and which ones you like or don’t, and the breast pump room procedures and protocol. You quickly make strange, intimate friendships with the other moms in the pump room. Learn their children’s names and condition. They are the only other people who know what you are going through. But then you quickly forget them once home, out of survival instinct to leave the painful time behind you.
I was released four days after the twins were born. Although they were doing great, I was going home without them. With all the medical intervention, feeding tubes, the beeping and whirring of monitors, endless hand washing, all the alien hours we spent in hard chairs, disconnected from the world, peering through plastic at them, leaving the hospital without my babies hit me as the most unnatural thing possible. I cried the whole way home.
Our usually cool grey rainy October days had become a cold but sunny November and it felt like we are out of the woods. It was Saturday November 4th and the kids were a week old. I was healing nicely, the kids were gaining weight, and I was doing well with my pumping every three hours and was bringing milk in to the NICU. My husband, my mom and I had showed up at the NICU to spend the day with the twins. A nurse blocked the path to our section. There was a ‘complication’ she said. That morning they had found blood in Gabe’s diaper. They had already started antibiotics but wanted to do some other tests. The doctor on duty for the weekend sat us down. We could tell it wasn’t good. She said the next step was a spinal tap and gravely handed me consent forms. I couldn’t sign them. I handed them to my husband.
After the spinal tap and another diaper with blood they concluded that Gabriel needed higher level care. Hours later we were in an ambulance with a transfer team taking us to Sick Kids Hospital. There he was placed in the Level 1 NICU. Most of that evening is a blur. His new doctor sat us down in a private waiting room and told us the diagnosis: Necrotizing Enterocolitis, or NEC. This is a condition seen primarily in premature infants, when portions of the bowel undergo necrosis (tissue death). They think it’s because of an overgrowth of bacteria. She didn’t give me any hope for survival; she made it very clear that this was VERY serious.
They had put him on strong antibiotics and he would be monitored closely. The fear was that the bowel would perforate and dump its contents and bacteria into his abdomen. Even though visiting hours were long over, they let us sit with him. I sat there like a zombie wondering how I could say goodbye to someone I barely knew and had waited for my entire life.
At 2 a.m. my mom and husband said that we should head home and try to get some sleep. They were concerned that I was still weak from surgery. I said I couldn’t leave and I had to be there if he died. I asked the nurse what the chances were of him making it through the night. She looked at me like I had asked her what planet she was from and said, “Oh, he’ll make it through the night, he is going to be fine.” When she noticed I was staring at her like she really did come from another planet, she added, “The doctors have to tell you the WORST case scenario, but we have much tinier preemies in here with much worse cases, and they are fine. You have a big boy there, his case was caught early and he hasn’t perforated. He is really sick but it looks good, go get some sleep, I’ll call you if anything happens.” We went home, but I didn’t sleep much. We went straight to Sick Kids in the morning to find out he had perforated overnight. They scheduled the surgery for later that day and I went to the pump room.
Many of my memories of that time are of the pump rooms. Travelling back and forth between the two hospitals every day, all day, and pumping every three hours wherever I was. Maybe because it felt like the only thing I could do to make them well. It was the one act of ‘Mommy-ness’ I was allowed, this I could do.
I was allowed to hold Beatrice for short periods, but with all the tubes and constant concern for body temperature, the cuddles were awkward and short. After about ten days she was doing so well they took out the IV, which made things a lot easier. They also wanted me to start putting her at the breast even though she might only lick and sleep. It would help with my milk production (which wasn’t great from all the lack of sleep and stress) and it was bonding time, which we both desperately needed. I think I finally started to feel like a mom during those short periods.
Gabe’s surgery was 3 hours long. It was a Sunday and the hospital was quiet. The three of us sat in a huge empty waiting room…waiting and praying. The surgeon slowly walked over to us and sat down. “It went great.” I’m not sure I heard much more of what he said after that, but I did learn that Gabriel lost 10 cms of his distal bowel (apparently the best part to lose) and also his appendix (which is weird because, if you are an anatomy geek like me, you know that the appendix is on the other side of the abdomen). Essentially they cut out the dead tissue and re-joined the pipes. They had created an ileostomy (like a colostomy but from the small intestine instead of the colon), which he would have for approximately four months while his gut healed, after which they would reverse it. He had a long road ahead of him, but he had a road, and I could breathe again.
I’m not sure how we made it through the next few weeks. The landmarks that meant they were one step closer to being able to go home: tolerating feeds, gaining weight, no bradicardias, no apneas, moving from an incubator to a cot. Slowly losing all the tubes and wires, one by one. The NICU nurses taught us how to bathe them, how to check temperatures, different tricks to encourage decent feeds and ways to burp efficiently. Although they are twins they had very different challenges. Gabe was a great eater but would often spit it all up. Bea was slow and would fall asleep in the midst of a meal, forcing us to put the rest of her feed into her NG tube (a tube in her nose that goes into her stomach) She wasn’t going home with an NG tube, so we had to find ways to keep her awake to finish her meal.
I managed to keep it together most of the time until the day Gabe was transferred back to the level two NICU. His (and my) favorite nurse at Sick Kids, Hillary, helped with the transfer back to the hospital he was born in. As soon as she walked in with the ambulance transfer team I broke down. In their first week together they had been on opposite sides of a partition. On this day we put him into the cot next to his sister. So this was the first time since they were born almost four weeks earlier that I got to look at them together. It was the first time I felt like I could enjoy the gift of these amazingly wanted babies. It was the first time we were a family.
It is now three and a half years later and as I write this I hear the kids playing outside with their dad. Everyone is happy and healthy and although we had a lot more drama, stress and tears than most trying to make our family it has made us hug them a little tighter, kiss them a little more and watch with wonder every minute with them that we almost didn’t have.
Emily Martin-Johnson is a work at home mom to twins Gabriel and Beatrice, who are three, and wife to Michael. She has always had a passion for cooking which then became a passion for feeding her family healthy ‘real’ food. Emily is a MommyBlogger and you can follow what’s happening with the twins and in her kitchen at http://lifeastudy.blogspot.com/