Calvin was admitted to the NICU at Georgetown on Sunday October 21, 2012. When my dad and I finally got to the hospital, we were told that he was down getting an MRI and should be back before too long. We sat there in that waiting room for what felt like HOURS. I remember it just feeling so surreal. That cold, dirty waiting room outside the nurseries felt like the depths of hell. There were pictures of "NICU graduates" on the walls, and all I could do was stare at those pictures and hope that we wouldn't be here long enough to make it on the wall. I could hear babies crying and see doctors and nurses coming and going from the unit. Every time the security doors to the unit opened my heart jumped a little hoping it was my son, and time and time again it was not him. Finally, I think about an hour or so after we got there, the doors opened and he was rolled in, still in his little traveling box. I jumped up and the nurse that was pushing him asked if I was his mom and I said yes. She let me look at him for a minute before she took him back inside the nursery. About 30 minutes later, they brought him back out and told me they needed to take him back down to have another MRI done, this time with contrast, because there was something that was "concerning" to them. Eventually Ryan and his dad got there and we waited some more. I told Ryan they had just brought him back from MRI and he was back there now, but we couldn't see him yet.
One of the nurses showed us the room he was in (we could see into a window at the back corner of the unit that he was in) and she opened the blinds so we could get a glimpse of him. I don't remember what she told me they were doing to him, but we weren't allowed to get to him or see him yet. She did tell us that they had to put him in contact isolation due to the spots on his skin and because they didn't know what they were or if they were infectious. The details of that night are hazy, but at some point they let Ryan and I back to see him. We had to wash our hands before we went into the unit (that's the normal protocol for the NICU) and we had to put on these yellow paper gowns and gloves before we entered the room and we were told we couldn't kiss him or hold him. They had him hooked to all sorts of machines, monitors, on oxygen and he just looked so frail and worn out. The doctor came and talked with us a bit and told us that there was nothing definitive back from the MRI but they think he may have had a mini stroke because there is a dead spot on the left side of his brain, which they said he could bounce back from. They also told us that the front of his brain looks slightly underdeveloped in comparison to the back of his brain.
They took some blood to do some blood cultures among other lab work. They let us sit with him for a bit before they told us we had to leave because they needed to do a lumbar puncture to check his spinal fluid. They weren't able to get any spinal fluid on the first try, so they ended up doing several (I think about 6 or 7) before we told them they needed to stop, that they could not poke him any more unless something drastically changes and they have good reason to.
His nurse for the day, Margaret, asked me if I would be breastfeeding or pumping and she got me some pump supplies and whisked me away to a mother's pumping room and showed me how to use the pump and basically left me to it, which was daunting because I had never pumped before. Luckily I was able to figure it out. Before she left, Margaret told us there is a parents room at the hospital that we might be able to stay at if its available. My dad checked into it, and that room was full, so he went over and reserved us a room at the hotel located on the campus of the hospital for the first night we were there.
The next day, they hooked Calvin up to an EEG to watch his brain waves and see if he was still having seizures. They started him on a round of antibiotics in case he had any infections or anything. They also did an ultrasound of Calvin's heart to see if there was anything wrong, which showed a small secundum with left to right shunting and a mildly dilated right ventricle.
Over the next several days, they continued to watch him on the EEG and noted no more seizures. Dermatology came and did a biopsy on one of the spots on his leg to check and see if it was infectious or if they could tell what it was. It came back a few days later as non-infectious, so they took him out of contact isolation. He saw a whole slew of doctors, medical students and specialists from several different departments in the first few days, including dermatology, infectious diseases, genetics, neurology, physical therapy, speech pathology, ophthalmology, and EEG (among others, I'm sure.) He had an eye exam which he passed and a hearing exam that he failed initially.
The next morning we were able to reserve the parents room, aka "The Nesting Place" for 3 nights so we were able to stay there for free (well, I'm sure they billed our insurance company.) Starting the 4th night, the social worker Allison got us a referral to the Ronald McDonald house across town, which was a lifesaver. It was a 30 minute drive across downtown D.C. in no traffic and sometimes took over an hour to get to the hospital, but it was better than being 2 hours away.
I continued to pump every 3-ish hours and take the breast milk to the NICU and that's what Calvin was eating exclusively once they took him off the IV fluids. They had put him on IV fluids when he got there because they didn't know if he was still having seizures and they were afraid of him aspirating. After 2 days, I was finally able to hold him and slowly start giving him a bottle.
On Thursday October 25th, they told us that Calvin was not having any seizure activity and we would be able to go home tomorrow, Friday the 26th. Yay! Unfortunately, at 7:30am on Friday, they called me and told me that they noted some seizures clinically and we were not going to be able to take him home yet. They told us that the dose of Phenobarbital they had given him back at our local hospital before he was flown to the NICU was just wearing off and that's why he wasn't having seizures up until this point. They gave him some more Phenobarb and hooked him back up to the EEG.
I went back to my house for a few hours on the 4th day to pick up some clothes and rent a breast pump from my local hospital that I could use when I was not at the hospital. I went back up to the hospital that night and spent the remainder of Calvin's time in the NICU at the Ronald McDonald house. I literally did not go home for the whole rest of the time he was there- 6 weeks. Ryan had to go back to work, so he would stay at home during the week and come up and stay with us on the weekends.
My mom was an absolute lifesaver during this time. She took a leave of absence from work back home in California and stayed with me and Paul at the Ronald McDonald house while Calvin was in the NICU. The rest of my family had to go home a few days after he was admitted, but mom stayed to help me for 6 weeks.
Here are some pictures from his first few days in the NICU.
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| After his MRI, the night he was admitted |
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| getting an ultrasound of his heart |
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| Hooked up to the EEG, with nasal cannula/oxygen |
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