My mom came with me yesterday to visit the boys. I always love the days when we are together. She helps keep me relaxed and I needed her by my side. When we walked in the greeter said, ” …you know your boys moved right?”   I didn’t know.  She continued “.. they are in the sunshine room now.”  The sunshine room is a beautiful room filled with big bright windows that let in lots of sunlight, hence the name, sunshine room. It is reserved for all the healthy babies that are getting ready to go home. I couldn’t understand how we went from where we were to there overnight .. but for a minute I was excited. She told me they were just doing work in their old room and they would have to go back by the afternoon.. that made much more sense.

I walked back and was met by a new nurse for the day.  She checked my bracelet and numbers. This is how they identify me as their mother. I was prepared with my 100 questions. I ran to Peter’s side of the room and my eyes went right to the monitors. I felt his head. The lump grew. His heart rate was 200. I checked his temperature 99.9. Now I’m upset. My main goal was to find out what is going on with Peter’s head and heart rate. I asked her the results of the blood test that was ordered yesterday and they were not back yet. She said the night nurse reported he had a fast heart rate and was ” tachycardic” and again this morning his heart rate was still fast. She also told me she was having a hard time regulating his body temperate. I’m right away thinking fever and infections. She called the doctor for me. She listened to all my concerns and validated them all but did not have answers.

My nurse insisted I hold my boys. I was visibly upset staring at his monitors, watching his heart race and alarms go off. She persisted. I wanted to wait for the doctors..I wanted to be prepared when they came in. She wouldn’t stop. I looked at them inside their box and couldn’t resist. I changed into my dreft washed kangaroo shirt and sat up in the recliner chair. She quickly passed me Peter. I almost didn’t hear the alarms or see the wires. I tuck him inside my shirt .. skin to skin.. and instantly feel better. Leave it to the nurse to know exactly what a mom needs.

I’m watching his heart rate.. over the next hour go from the 190’s.. to the 180’s and then eventually settle at around 160’s which is normal. He looks comfortable. Everything begins to regulate. His temperature.. his heart rate.. his respiratory rate.  She said she wasn’t able to accurately control the temperature in his isolette anymore. His probe kept falling off ( the other nurses for the past few days have been telling me the same) and it kept getting very hot inside. She also said he is ” big now” and doesn’t require as much heat. She shut off one of the main heaters in there and dressed him in his very first shirt. It was a size newborn but still huge in him. He looked so cute. When she put him back in his vitals remained stable. He looked the way he did a few days before. Peter was trying to lift his head and back to his feisty self. I think she solved the heart rate issue…he was just really hot. Another reason why Our nurse is one of the best I have ever had. It’s hard to believe that sometimes things that simple go missed.

The doctors came in. I reiterated my concerns. The growing “lump” on the back of his head is my main focus. It’s bigger .. noticeably larger and harder now. The ultrasound over a week ago showed nonspecific fluid. The doctors told me they never saw it before and the nurses are not familiar with it either. The treatment was to keep pressure off of it. They concluded “something must have irritated the back of his head” and by relieving pressure it should improve. Well it didn’t. Now I want an answer as to what this is. They continued to tell me it didn’t look like an infection because he didn’t look “sick.” Sick babies have trouble breathing and need more oxygen etc. This is not reassuring. She also said his white blood cell count got a little better and if was an infection that would not be the case. I wanted to be 100% sure it is not infectious or dangerous… Some kind of diagnosis other than non specific fluid. They told me even an expert might not know what it is. My response was at least we try to figure it out.  I wasn’t leaving this hospital without an answer.  I waited for the ultrasound.

In the meantime, I cuddled my Maurice. He’s growing .. tolerating 26 calories well. He is still on it over 1.5 hours and the next step is to try it over 60min. I’m going to talk to them about that plan today. His weight is 15.9 oz.. he is refusing to get to 2 pounds but slowly growing. He looks so happy today.. vitals are perfect. I held him and he snuggled right in. There is always some sense of guilt when I am holding one and not the other. I try to watch the clock and make sure the time is equal as best I can. He feels so tiny after holding Peter. Maurice opens his eyes and stares into mine. I hope he knows how much I love him.

They come in the room to do Peter’s ultrasound. It felt like an eternity. It’s the same woman who did it the first time and I’m happy about that. Ultrasound is very technician dependent. It is very easy to make something look bigger than it really is. She seemed very thorough and having the same tech makes it better for comparison. She commented right away on the size saying it looks much bigger and firmer. She downloaded the images immediately and we waited to hear from the doctor for the results.

While we waited, we were visited by a social worker. My mom and I were about to finally have our first meal of the day at 4pm and she walked in and told me I had to sit with her. I think they called her in on me because I was still visibly upset. The “we don’t know ” approach and ” wait and see” does not work well with me. I let it go for over a week and now it was time for more answers. She wanted me to sit back take some deep breaths and meditate.  I told her I’m all about the zen but explained my situation and that I needed answers now. She continued telling me how important it is for me to be able to relax .. it really only made me more anxious… and by now I was hangry. I told her I appreciated her efforts,  but for now to just accept where I was and we can revisit the mediation at a later date.  My mama was even more hangry and just waited outside. She helped walk us to the cafeteria.

We ate and had some conversation. It felt nice to leave the room for a little while but I couldn’t wait to get back. When we returned,  My nurse told me we just missed the doctor. She had the results and was coming to discuss them with us… after sitting there all day I couldn’t believe that in our 30 min break we missed it. Thankfully she came back. She said it did grow. She called the radiologist and he told her he had seen it before. He called it a cephlaohematoma. It is a traumatic subperiosteal hematoma ( collection of blood), that occurs underneath the skin, in the posterium of the infants skull bone. Basically,  it is damaged blood vessels that broke.. (usually during a traumatic birth) or can occur with multiples, that resulted in unnecessary pooling of blood on top of the skull bone and inner layers of the skin. It is not inside by the brain rather superficial or on the outside. It usually calcifies and becomes harder and larger before it reabsorbs. The process can take a month and does not cause any harm to the baby or brain. This made sense. It looks exactly like what they are describing. She did however say she will bring in a plastic surgeon to evaluate it. According to our doctor, plastics should have more experience with this. I’m surprised this diagnosis and took this long to figure out,  but I’m happy at the end of the day we have some resolution.

Peter smiled when I took his picture.  I think he just wanted some attention because Maurice has been stealing the show for the past few days.  I left feeling ok. Sad to leave my boys as always but having some peace knowing these “mysteries” have answers. His heart was racing becuase he was hot.  Something that simple.. not anemia or an infection he was just hot.

I’m so appreciative to their beautiful nurse yesterday.   I will continue to take an active role in my children’s care.  I am their mother and will live my life protecting my babies in any way I can 💪🏻💙