Visiting Nicholas

Before I had a child in the NICU, I always had the idea that it was a hectic place, filled with harried nurses running around saving tiny lives. When I visited Nicholas on the fifth floor NICU, the unit was quiet and almost peaceful. Each baby had his or her own room and a nurse sat between two rooms and monitored two babies. The nurses were Angels on earth. They were amazing. Yes, there were alarms and yes, the nurses were in fact saving tiny lives daily, but it was a calm and loving place to be.

My sister and I went in to visit Nicholas. Zachary, having had a bit of a traumatic experience during my labor and delivery, was feeling pretty scared of the hospital in general and didn't want to go in and visit his brother. Because Emily wasn't allowed in either, Mike sat in the lobby area with Zachary and Emily while my sister and I visited. I met the nurse practitioner heading the floor and met the nurse who would end up being one of the two primary nurses that we would have while on the floor. 

The baby next door to Nicholas was very sick and incredibly medically complex. As such, Nicholas was paired with that baby because he was "easier" and the nurse's workload was balanced. The first nurse I met on the fifth floor had been caring for the baby next door for months and so was almost always Nicholas's nurse when she was working. You form a relationship with the nurses. We knew she was planning her wedding. She knew Zachary was terrified to come in. We trusted her with one of our most precious possessions and she proved herself totally worthy of that trust. With one exception, we felt that way about every person we met on that unit. 

The nurse practitioner called for a child life specialist to work with Zachary and make him feel more comfortable. She also worked it so that, as long as Emily got a clean bill of health from her pediatrician at her first appointment, she could come into the NICU also so we wouldn't be split. 

The days became fairly monotonous. We would wake, eat breakfast, complete any errands we needed, drive to the hospital, stay in the room with Nicholas. We usually tried to leave before 7:30 p.m. because that was shift change and we would be locked in our room until 8:30. 

Some days our child life specialist would come and play with Zachary. Some days she would come and take Zachary to the play room on the pediatric unit. Some days there was a child friendly event and we would take Zachary. Some days he would want to spend the whole day in the family lounge in the NICU. We grew to know most of the staff and met several parents (Mike knew more than me).

We were not initially allowed to hold Nicholas because he had a line placed through his umbilical artery. It would be devastating if that were pulled out. It took a week for them to place a PICC line and then we were finally allowed to hold him. It's weird to have a child and be able to see them and talk to them and touch them but not be able to hold them in your arms. It made the moment we could hold him so much more special. And allowed for bonding to finally start happening. 

Merry Christmas!

Emily slept through the majority of her first Christmas. Zachary enjoyed it, and was quickly falling head over heels in love with his little sister.

Because I had to feed Emily once every few hours and because she hadn't had any vaccinations yet, she wasn't allowed in the NICU so I couldn't really go either. Mike left soon after we opened presents to spend the day with Nicholas so he wasn't alone on his first Christmas. 

My sister made our Christmas dinner, and let me spend time with Zachary and Emily. Since I was still recovering from the c-section, I wasn't terribly useful anyway. 

It was a very quiet Christmas and our family felt somewhat disconnected because we were split. 

Discharged

On December 24th, Emily and I were given clean bills of health and were determined ready to be discharged. We packed up everything in our room and dressed her in her going home outfit. The nurses told us to leave everything in our room while we went up to the NICU to say goodbye to Nicholas.

I had known since before giving birth that we would be leaving him in the NICU when I went home. I had prepared myself that we may potentially have to leave Emily there too, so it was very positive news that she was coming home with me. It still didn't prepare me for what I felt, leaving him there. 

The nurse practitioner heading the NICU that day was prepared with tissues and hugs. She told me that, having worked for years in the NICU, she felt that she understood how difficult it must be to drive away from the hospital without your child in the car. Then she had a son who had to stay in the NICU. She said she sobbed the whole way home and nobody could calm her down. 

I cried as we drove away. I knew he was in amazing hands and that the nurses on that floor watched over these babies as if they were their own, but I was leaving and my baby wasn't coming with me. I thought I was prepared for that. You can never be prepared to leave your child behind in the hospital. 

Emily kept me very busy and luckily my sister was here also, so that distracted me enough that I made it through the first day and night at home.

After Brain Surgery

We waited to hear that Nicholas had been moved back to the NICU so Mike could go see him. Zachary sat next to me in my hospital bed playing with the remote for the TV in the room. I held Emily, nursed her, pumped for Nicholas.

Finally, Mike's cell phone rang. Nicholas was back in the NICU. We could go see him if we wanted. Mike went up, I stayed in my room with Zachary and Emily. 

He was still intubated, which we were expecting. He had a small incision in the upper right part of his skull. The neurosurgeon had not needed to make the incision behind his ear, so the only other incision was in his belly where the neurosurgeon directed the end of the shunt catheter to drain. We were so thrilled that the pressure would start to reduce. 

Mike came back to the room with the news and pictures. At 2:45, we received a call from the NICU. Nicholas had woken up and started to fight his intubation. The respiratory therapist monitored his oxygen levels and decided to remove the intubation to see if he would be okay. And he was. His intubation that was supposed to be for two or three days ended up lasting less than 8 hours. It was then we knew we had a fighter on our hands. 

Brain Surgery

Two days after he was born, Nicholas was scheduled for his shunt placement. The neurosurgeon and his student came to my room before the surgery and made sure that I was aware of what would be happening.

To place the shunt, the neurosurgeon would go in through Nicholas's soft spot, place the shunt on the right side of his head, and then thread the catheter between the skull and skin behind his ear, down through his chest and end up floating in the abdominal cavity. The shunt was set for a certain pressure (started at 100 - which is fairly high), and would drain any cerebral spinal fluid that caused his brain to be above the set pressure and dump the extra fluid into his abdominal cavity where it would be absorbed by his intestines and urinated out. 

The neurosurgeon told us, as long as there where no complications, the surgery would be about 15 minutes. Nicholas would be intubated for up to three days depending on his recovery process. Mike and Zachary went to walk with Nicholas to the operating room and would be there when he got out. I could have been wheeled there too, but having Emily with me meant I should stay in my room with her. 

I don't remember just how much time passed, but eventually the neurosurgeon and his student reappeared in my room. They let us know the surgery was done and Nicholas had done very well. Now we had to wait and see if the surgery would do what we needed it to. 

Meeting our daughter

After leaving the NICU, I was wheeled to my room in the mother/baby unit. I met my first nurse and was allowed to order some clear liquid food off the menu. I inquired about how much longer they were planning on keeping Emily in the nursery and was told that they would find out. Mike and Zachary settled in on the couch and Zachary was allowed to watch some cartoons on TV.

I kept a close eye on the clock and at exactly six hours after I was wheeled into recovery, I asked Mike to find out what was going on with Emily. He left and a few minutes later walked back into the room pushing a bassinet and our daughter joined us. A lactation consultant who also worked with babies in the NICU followed her in and we started working on breastfeeding. Since I was also going to be pumping for Nicholas, she brought me a pump kit and a pump. She promised me that I wouldn't get much in the beginning but to send whatever I was able to pump to the NICU for Nicholas because every little bit helped.

Zachary was very curious about his sister and also very excited to finally meet her. We let him hold her and touch her and begin to form a relationship with her. I was amazed that he was so good with her. He had no jealousy or anything, he immediately declared that his baby sister was "soooooo cuuuuuuute" and wanted to take her home right away.

Mike visited the NICU a few times during the day and promised me that Nicholas was doing well. He needed no respiratory assistance - was completely breathing on his own. That was huge - because of the level of severity of his hydrocephalus, they were uncertain just how many brain functions he would be able to use. The fact that he had basic abilities indicated some brain function which was something we wanted to see.

Later that night before Mike took Zachary home to sleep, we dropped Emily off at the nursery and Mike wheeled Zachary and I to the NICU so I could spend some time with Nicholas.

After They're Here

I was in the post partum recovery for a few hours after the C-section. It was very surreal because when I gave birth to Zachary, he came with me into the recovery unit and I began breastfeeding him within an hour of giving birth. I was in recovery here, had just had two babies, and yet had none with me.

Nicholas went directly to the NICU for evaluation and to prepare him for his impending brain surgery. Emily went to the newborn nursery for observation for six hours because she was born as a preemie. The twins were born at 35 weeks, which is apparently a pretty good length of gestation for twins. Nicholas was born at 7 lbs exactly and Emily was 6 lbs 1 oz. Healthy weights, and (beyond the obvious hydrocephalus in Nicholas), they both seemed to be in perfect health.

After shift change, I was allowed to leave recovery and to be moved to my post partum room. The nurses drove my hospital bed into the Newborn Intensive Care Unit, the first stop for all NICU babies after birth. It was a small room with isolettes and warming beds all shoved in closely together. The lights were dim and it was fairly quiet. I hadn't seen Nicholas when he was briefly showed to me after birth because my husband had my glasses, so this would be my first chance to lay eyes on him.

Because Zachary had had to come along for the birth, he was obviously still there during recovery and in the transport to the mother/baby unit. The recovery nurse had packed him into my hospital bed next to me and he was allowed to come along for the ride. I was very nervous about him seeing Nicholas for the first time, especially since my husband nor I had seen Nicholas and had no idea what he looked like and if it would potentially scare Zachary. We have since learned that we underestimate Zachary and to just let things happen organically because he doesn't look at the world through the same eyes we do.

My hospital bed took up a large amount of space in this crowded room. We wheeled up next to Nicholas's warming bed and I laid eyes on my youngest son for the first time. The first thing I noticed was that he was adorable. He had a giant head, yes, his eyes were open because there was too much pressure for them to fully close, and he had wires all over him monitoring him, but all I saw was an adorable baby boy. Zachary, who I'm sure was completely overwhelmed at this point, whispered in my ear to ask if he could touch Nicholas. The nurse helped him touch Nicholas, and my heart melted. I knew we were in for a different journey than we had originally planned for, but this was the first time that I felt we might be okay.