NICU – Part 4

First, I want to apologize that I’ve taken so long to update this blog with a new posting. Writing about our experience kind of makes me feel like I’m reliving it. A lot of what I felt I didn’t really remember until I forced myself too so I could write these posting. So, again, I apologize for delaying the next entry to this blog.

After the three, long, long days of waiting to hear from the boys head neonatologist, we finally sat down in a very sterile, teaching room close to the NICU, to review the ultrasounds with the doctor. I’ll never forget how scared I was. I kind of felt like I was in an out of body experience. They had these little desks spread throughout the room. My mother, mother-in-law, husband and myself all went to attend the meeting. Each one of us sat at the back of the room along the back of the wall in these little desks. There was a large space between us and the neonatologist. He was at the front of the room so he could display the ultrasound films on the light board on the opposite wall.

I think that before the doctor even began discussing the findings, I started to check out. It was too much to take. I kept thinking that we shouldn’t have been there. This isn’t what was supposed to happen. I just wanted to bolt. I wanted to get out of that room and I couldn’t. So, he started showing us in the pictures. It was awful. There was all this whiteness to the pictures and I knew that it really was a Grade IV bleed. The bleeding into the ventricles has resulted in a decreased blood supply to other parts of the brain, causing ischemic damage with subsequent bleeding.

Then, he began the prognosis. It scared me to death. The one thing that I heard that stuck in my head was “Cerebral Palsy”. I couldn’t get away from it. I knew what that meant. Other words he used included paralysis, hydrocephalus, life-long neurological deficits, developmental delay, seizures and even death. I knew what his life would end up being. I kept telling myself that I didn’t just spend 9 weeks flat on my back cooking those babies inside of me to have such a negative outcome for one of our children. Then I started to cry. Besides the voice of the endocrinologist speaking, it was deathly quiet. My jolting sobs sounded three times as loud as they were because of the quiet. The doctor was a very gentle man. He truly cared about Matthew’s outcome. At the end of the conversation, he gave us a glimmer of hope. He made a small statement that there are a very small, tiny percentage of babies who do have the bleed discontinue and the blood absorbs into the brain. If this happens, there is a minute chance that the baby could come out of it without any major problems. That was all we needed to hear. We grabbed at that hope and we took it and began to spread it to all of our family and friends. Matthew had half of our state praying for him.

Pictures of the Boys in the NICU

Matthew – Baby A

 

Jack – Baby B

 

Christopher – Baby C

 

NICU – Part 3

Hi Everybody. I know it’s been a while. Writing that last post took a lot out of me and I’ve felt a little drained. But yesterday was Mother’s Day and I know I needed to continue this chapter of our life.

After I stood there for about five minutes sobbing, I immediately went into survival mode. I needed my husband. He was my lifeline. He was my rock. I left the NICU to call him in the NICU waiting room. He immediately left work and sped down to the hospital to join his father and myself. He wanted to hear it all from the doctor himself. He wanted to be able to process it firsthand from the staff. When he arrived, he went back into the NICU and he told our son’s nurse that he would like to speak to the doctor about our son’s condition. Within a few minutes, an intern emerged, not the neonatologist on for the day. The intern proceeded to tell my husband that the neonatologist was not going to be able to come out to talk to him and that there really isn’t any information that they can give us until the head radiologist does a thorough evaluation of the ultrasound scans. He told us at that time, our son’s head neonatologist would request a meeting with us to review the scans. My husband was furious that such a serious problem that a family needed to ask questions about had to be answered by an intern who, himself, was not very knowledgeable about the situation.

While all of this was going on, I remember sitting in a rocking chair next to our baby’s isolette. He looks so perfect. So beautiful. He looked just like my husband’s baby pictures. He had been the strong one that had been sitting on my cervix and caused so much of my preterm labor. He had wanted out so bad. He looked like such an angel all curled up in his isolette. He was nice and warm and content. It seemed so unreasonable that he had such horrific damage done on the inside of his head. I remember that I kept looking at his head. I became fixed on it. I was looking for any sign that might show that it was there. I felt like if I couldn’t see it, then maybe it wasn’t true. Maybe it was another baby’s scan and it had just gotten mixed up somehow.

After a few hours, I started to go numb. I realized that this was real. It was not a joke. It was really happening. Then, I started to shut down. I had been in tremendous pain from the c-section and had been doing way to much walking around. I’m sure that the stress also contributed to my health that day as well. I went to the bathroom and discovered extremely large clots being passed. Some where even the size of golf balls. I knew that this probably was not a good thing. But I was turning myself off from reality. I couldn’t deal with it. My husband drove me home and I remember just walking through the door and going straight to the bedroom downstairs that I had been sleeping in the night before. I laid down and just froze. My husband says that I just stared out in space. I felt like I just had to run. I was running away in my head. If I ran away, then everything that was happening with our precious boy, would go away. I was like a zombie. No emotion. No speech. No life. I felt dead. I know that this isn’t rational thinking. But it was the coping mechanism that I felt like I needed. I had been through so much in the last 6 years. I couldn’t believe that this was really happening.

My husband knew that I was shutting down. He sat down on the bed next to me and kept saying my name trying to get me to respond. He kept saying it over and over. Then he kept saying, “Please don’t do this. I need you. The babies need you. I can’t do this without you. You have to be strong. You have to be brave. Everything is going to be okay.”

What? How can I be strong anymore? I felt like I had been run over by a big rig truck with everything I had gone through. My body was numb. My mind was numb. I just wanted to curl up in a ball and run from it all. I didn’t want to have to feel. At least for a little while. Didn’t I deserve that? Wasn’t that understandable?

But my husband needed me too. It wasn’t fair to him. He needed support just as much as I did. He had been the rock and positive one for the last 9 weeks. Now he was feeling the weight of it all as well. We needed to be there for each other. We needed to be the team we had always been in our relationship. I sat up in bed and put my arms around him. We just sat there crying on each others shoulder for quite some time. We vowed to be strong for our son. Strong for all our little men and strong for each other. We would have to wait for 3 days now for the ultrasound reviews. THREE DAYS! It felt like an eternity.

NICU – Part 2

Knowing what this next post was to entail, I have prolonged writing it. I apologize for that.

The entire time I was on long term bed rest in the hospital, all the doctors and nurses kept telling me that if I just could make it past 28 weeks, that it would be wonderful. So, I did that. I made it to just 2 days short of 31 weeks. The day after I was discharged from the hospital, I went to the NICU with my father-in-law. I couldn’t drive myself and he was nice enough to drive me in to see the boys. At this point, the boys had been in this world for about 5 days. I was so excited to see the boys. I remember walking in to that NICU with such anticipation and positivity. Today was going to be a good day. But as I stood there, I could sense a strangeness in the air. Something was not right.

Then, the neonatologist on for the day, approached me. I’ll never forget the dryness of his voice. It was monotone. It was unemotional. It was lifeless. “We did Matthew’s first routine head ultrasound and it revealed that he has had a Grade 4 Intraventricular Brain Hemorrhage on the right side of his brain. We don’t know what is going to happen. We’re just going to have to watch him.” Excuse me? No, no, no. This isn’t possible. He was fine. I made it to almost 31 weeks. Everyone said he was going to be okay. What the hell is going on???? I remember that the NICU sent over a Parent Handbook to read while I was on bed rest at the hospital before I delivered. I remember reading that section. I knew what the diagnosis usually entailed.

Intraventricular Brain Hemorrhages, also known as bleeding in the brain is most common within the first 3 days of birth and in very premature babies especially a baby who is born weighing less than 3.5 lbs or born before 32 weeks. This bleeding happens because the brain of a premature baby is very immature and because of that immaturity, the fragile blood vessels will rupture easily. The smaller the premature baby is, the greater the chances of IVH occuring in the baby. There are four different levels of IVH depending on the amount of bleeding in the brain. The first two levels are the most common and usually do not cause identifiable brain injury. The body slowly absorbs the blood. The third level is when the ventricles of the brain are becoming enlarged and the fourth level is when the bleeding begins to seep into the tissues of the brain. This bleeding into the brain can cause damage to the tissue inside the brain. Level 3 and level 4 are very serious and can cause permanent brain injury. When permanent damage does occur, some long term problems have been associated with the damage. Some of these problems can be hydrocephalus, cerebral palsy, speech problems, vision difficulties, trouble with motor skills, learning and memory obstacles, attention disorders and behavioral issues. .

I remember for one split second wondering where the camera was. I was on candid camera, right? How is this at all possible? Then I remember looking around the room. The nurses had moved away, looked away. For the last 5 days they had been so friendly. So positive. Now, I felt as if our family had the plague. To contain myself, all I could do was wrap my arms around my father-in-law and sob. I had to sob. What else was there? I could feel the eyes on me. The stares and pity. Where were the hugs? Where were the words of encouragement? Where was the understanding for a new mother in pain for what may lay ahead for her child when so many of these women were mothers themselves? To make matters worse, the doctor left and I was standing there with unanswered questions. I needed answers. I needed to know exactly what he had laid in front of him so we could plan. I was a planner. I was a control freak. And I had no control, no way to plan. I felt helpless.