I just submitted a short story about Ansley and HELLP Syndrome to She Writes Press. They are putting together a book entitled Three Minus One. It will be a collection of stories, art and poetry all based around the unpleasant topic of stillbirth and neonatal death. Please keep your fingers crossed that Ansley’s Story is one of 80 submissions selected.
We were settling into life with babies in the NICU. Chris had taken a week off of work after the babies were born to spend time with them and also to help me. As it turns out a c-section is a bigger recovery than I had anticipated. I am not sure why I didn’t think it would be a big deal; after all it is a major surgery. Even recovering, I spent most of my time in the NICU minus the one day I was running a mild fever. If you want to torture a new mother, first tell her she can’t hold her babies, and then tell her she can’t see them for 24 hours.Day 8 will go down as one of the best days of my life. It was the first time I was able to hold one of my babies, Landon. Eight long days had passed of only being able to look at them and reach in a small hole in the incubator and gently touch them. Eight days of hearing them cry and being unable to comfort them. On day eight we were able to start Kangaroo care.
Once a day, for one hour, Chris or I could hold a diaper clad baby against our bare chest. Kangaroo care allowed for bonding time, but also had many other benefits. For me, it helped my milk production. For the babies it helped them regulate body temperature, heart rate and respiratory rates. It allowed us to get to know one another in a way not possible with them confined to the incubator.On day 9 Chris got to hold Nolan for the first time. As much as I wanted to hold him, I had to allow dad his time too. So it was day 10 that I was able to hold Nolan for the first time. There are no words to describe the feeling. The babies were so small it was intimidating for a split second, but that feeling was quickly overcome with so much joy.
We had developed our schedule. Chris would go to the NICU in the morning and visit with the boys, I would come around lunch time and Chris would meet me there after work. The doctors would do their rounds between 9 and 10 am. Chris would wait to head to work until after the morning updates. On day 11, I didn’t get my normal update phone call from Chris. I assumed rounds were taking longer, maybe they got a new baby in the NICU, maybe Chris got caught in conversation. It never crossed my mind that something might be wrong. I don’t know why, after all, just the weekend before we had met with the doctor and he advised that the “honeymoon phase” was ending and they boys were at high risk of infection. He advised we not have lots of visitors for awhile and take extra precautions. Even with that conversation fresh on my mind, I couldn’t fathom one of the babies getting sick. But, I heard it in Chris’ voice when I called to see how the babies were doing.
His voice was somber, he barely sounded like my husband. He told me Nolan was not doing well. He had an infection called NEC or . I had heard of this. This infection was one reason they were so firm about the boys getting breast milk rather than formula. Chris said they were running lots of tests and starting antibiotics, we would know more later in the day, but they felt they were ahead of it. I jumped online to read everything I could about the condition; It is a gastrointestinal disease….typically effecting preemies in the first 2 weeks of life…may require surgery… survival rates of 70-80%. That mean20-30% don’t survive.
I couldn’t bear the thought of losing another baby. I prayed like I have never prayed before as I drove to the hospital. As I entered the NICU there was a lot of activity all centered around Nolan. Chris was sitting in his room, trying to be present yet out of the way. The PA addressed me as soon as I arrived. She told me they felt they were still ahead of it, they had just run another blood gas and done another series of x-rays. They were monitoring him closely. They were not yet sure if he would stay in the NICU there or get transferred to Children’s. They felt he was starting to work harder than he needed to on breathing and warned us not to be surprised if they ventilated him. They wanted all his strength going towards beating the infection. The crowd had cleared out of Nolan’s room and for the first time that day I got a good look at him. He looked sick. His skin was a grayish hue that hope to never see again.
I soon learned that it was Nolan’s night nurse that first suspected something was off. She had cared for Nolan every night she had worked since he was born. She knew his coloring and his activity level; she knew all things normal to Nolan. And, she knew when things weren’t normal. I give her a lot of credit; we may not have ‘gotten ahead of the infection’ had it not been for her. I always preferred when the boys had the regular nurses. They would occasionally have on call or traveling nurses in the NICU. Some of them I liked, some of them I didn’t. Go figure today Nolan would have one of the on call nurses that I didn’t care for. I felt she would say things to Chris and I trying to invoke an emotional response. We were both in survival mode, collecting information, staying strong and focused; we could be emotional later.
Just when I had had about enough of the nurse, my favorite day nurse stopped by to check in on Nolan. She placed her hand on my back and told me she has stood in my shoes. Her daughter had NEC and her twins ended up in different hospitals. It doesn’t make things easier, but then again none of this is easy. If we end up with two babies in two different hospitals 35 miles apart, it is just another challenge that we will be able to overcome. That was the message I needed to hear.
We spent the rest of the day and ½ of the night sitting with Nolan. They had stopped feeding him, in fact they were suctioning all stomach excretions out of him. So, all we were able to do was a quick diaper change every few hours. Before we finally left for the night they made sure they had both of our phone numbers on the top of the chart. They also wanted to know where we lived and how quickly we could get back to the hospital if need be. It was a very unsettling feeling leaving the hospital.We had planned to return first thing in the morning, but before we could get out of the house we got a call from the NICU. They had put Nolan on a ventilator overnight and also added another PIC line through his scalp. They just wanted to call and tell us because it can be shocking and a scary sight if you were not anticipating it. They also had to shave a small part of his head, but saved me his pretty blonde hair. His first hair cut.
Luckily he never got any worse, the NICU staff had caught it early and the medication worked. He got to stay in the same hospital as his brother, and he wasn’t going to require any surgery.
My heart still breaks to think about him on the ventilator. Imagine a baby trying to cry, but no sound comes out. You can tell they are in pain and you can’t do anything to comfort them. They mostly kept him sedated. Four days and one partially collapsed lung later, he was taken off the ventilator, but it would be another 6 day before he could try to eat again.
*I am still so far behind on my blog. I will try to get caught up soon*
There is something fascinating about preemies. Their muscle mass to overall body mass ratio allows preemies to do things most newborns would not do for months. Both boys were very active. They would wiggle and worm their way around the incubator. We joked any minute they would get up and walk on out. Landon liked to lie on his back, arms up above his head, legs propped up on the ‘nest’ the nurses made to try to contain him. Every 3 hours after a diaper change, temperature check and feeding, he would get repositioned. Back to sleep rules don’t apply in the NICU.
When Landon was 4 days old, Chris and I were sitting in his room. We spend most of our days moving back and forth between rooms watching our babies in their boxes aka incubators. Chris had begun to refer to them as his little turtles in a terrarium. We had not been able to hold the boys; we could simply sit and watch and wait.
Landon decided since we were watching he would put on show. He was in a prone position and we watched as he stuck his butt up in the air; think downward facing dog yoga pose. We were joking with the nurse that he really didn’t seem to want to be on his tummy when before our very eyes he rolled over. He managed to put all his weight on one leg and flipped and flopped on over. Once on his back he assumed his favorite position and fell right to sleep. I, for one, could not believe my eyes.
In the days to come, we were often told how active our babies were. This was good news. Active babies equal strong babies. They had a lot of fight in them. Their activity level helped to reassure us they were going to be okay.