A Precious Son Born-Too-Soon & #Preemie Guilt

GUEST POST: By Denise Brown, Preemie Mom & Blogger SunshinePod22 Blog

Lj Shortly after his birth 10 weeks premature

Johnny L. Bowen III (Lj) was born 10 weeks early via emergency C-section at Rainbow Babies and Children of Cleveland.

My water broke late night on December 10th 2009 at 30 weeks pregnant. I was laying in bed trying to sleep. I couldn’t get comfortable and turned over. That’s when it happened, I felt a small trickle of water. I was alarmed, so I moved again and felt a large trickle. I went straight to Huron Hospital where my regular OB was on call and was immediately told I would be getting transferred. Once transferred to Rainbow, I was taken to the high risk floor of the hospital. The doctors were hoping that the baby would stay in for another 2 to 4 weeks, but an ultrasound showed that Lj was having trouble.

From that point on, my life changed very fast. I went straight from the ultrasound to OR#2. I was scared out of my mind. There were neonatal nurses everywhere. There was more than one set of hands on me at once. Once I was given a spinal, they started the C-section to get my baby out. I could feel them cutting, so they gave me additional drugs to sort of knock me out. Lj was born December 12th at 7:54pm at 3lbs 4oz.

Through all of this, I was also stressed and worried about my oldest son. Where he would be while I was in the hospital. What we were going to do if my baby passed away. It was the scariest thing.

My stress had been building for a long time. I hadn’t had a job for about three years because my arm had been smashed in a freight elevator at work. I had to have 3 surgeries to fix the damage, but the surgeries could not repair the extensive nerve damage. I was behind in all of my utility bills and on the verge of loosing my apartment. So I felt so guilty for Lj being born so early, that it may be my fault that my water broke.

Waking up from my c-section was something I’ll never forget. I just remember thinking “Where is my baby? What is happening to him right now?” Some of my family and some of Big Johnny’s (Lj’s dad) family were there in my recovery room when I woke up. My oldest son, my two sisters and my mom was there. Big Johnny’s sister and nephew were there as well.  I remember thinking “As soon as this spinal wears off, I’ve got to be with my baby.” I remember thinking “Did he pass away?” So I asked if the baby was okay and my youngest sister said, “Yes he is beautiful.”

If I could have, I would have slid on the floor to get to my little baby. I knew Lj’s Dad wouldn’t let anything bad happen to the baby. But I needed to be in the room with my little one. After about an eternity, the spinal wore off and Lj’s Dad came and took me in a wheel chair to Sunshine Pod room 22 of Rainbow Babies and Children’s Hospital of Cleveland.

If I can paint a picture for you this is what I saw. I saw my little baby in this clear incubator with this little diaper that was too big covering his little butt, no shirt or socks, lying on his back with this giant mask that seemed to cover his whole face. He had two IVs. One IV in his arm and one IV in his little bitty foot. His eyes were closed, he had blue, red and black cords that streamed to a machine that monitored his vitals. There were loud beeps and flashing lights. Bells and a lot of nurses. He had no fat. It seemed like he was a skeleton with skin. He was pale and a little yellow and his cry sounded like a baby kitten. I remember thinking “Is this my fault? Did I do everything possible to keep him in?” In my mind, I felt like it had to be something that I didn’t do, or something I overlooked.

I felt guilty because in the beginning of my pregnancy I was a busy body. I was trying to finish school to be able to better provide for my oldest son Andre who was 8. He was my reason for doing all that I was doing. I was going to school full time while recovering from the last 2 surgeries. It was hard being in pain in class trying to find ways to get focused. Andre at the time was going through a lot himself at school and as a mom I felt it was important for me to put what I was going through to the side and focus on him.

I was so stressed that Andre could see I was going through a lot. He heard me cry at night because I didn’t know when I was going to have some type of income, so that bills and rent could get paid. He knew that we could be loosing our home soon. He knew that I couldn’t work because doctors did not release me for work. He knew that bills were piling up and that the stress and strain of the cost of living was weighing heavy on me.

When I found out I was pregnant I was scared and I didn’t know what I was going to do. The stress began to weigh in so heavily. My son wanted my full attention and I didn’t know how to balance everything.

I had been put on best rest, which interfered with going to school, and this was very hard for me to take. I would go to school everyday that I had class. I was determined to finish before the new baby came so I could provide for both my children. Well nature had a different plan. I began to bleed heavily and was put on permanent bed rest.

The doctor told me that I better make the decision to withdraw from school. I broke down and cried. I went back to school in the first place because I didn’t have the means to live, and I needed to be retrained for a different position at the hospital I worked at. So this was tough for me to deal with. I told myself that I would keep going to school. I was in my last round of classes before my externship.

But the doctors, my boyfriend and my mother talked me out of it. They made me see if I didn’t withdraw I could hurt my unborn baby. Unfortunately the bed rest did not keep my little one from being born early.  After Lj was released from the NICU, I did go and finish my last couple of classes and I finished my externship. I made the Dean’s list and had a great review from the doctor’s I externed with.

Lj and Big Brother Andre

As a mother of a preemie, I realized that if you are not a parent of a preemie, you really can not imagine what it’s like. If you’re not a mother of a preemie you couldn’t imagine what types of feelings a preemie mom harbors inside. The guilt, worry and thoughts of being what others may see as over protective takes over your everyday thinking. Your days and hours are constructed to fit the schedule of your preemie and if your preemie has special needs, your every move is made on what I call “Preemie Time”. I call it that because my days were not on a 24 hour time schedule, my days fit to Lj’s feeding and medication schedule. Our time involved home nurse visits, and visits from health care companies dropping off medical supplies and materials.

My experience being a preemie mom has been so hard. I was constantly running back and forth to doctor visits and testing. I was always worried about germs and sick people being around Lj, so I became confined to my own home. I was afraid that I could hurt him by accident. I am still just as cautious today as I was when I first brought my son home and he is 15 months old.

In my opinion the best way to deal with what I call “preemie guilt” is to talk to someone. I found it to be therapeutic to talk to other preemie moms. It seemed to soothe my thoughts because I knew that they can relate and understand what I’m saying. When preemie life seems to get hard I am always willing to help and listen. So if you need a friendly preemie word I can be reached on Twitter @dmocha1223 or by email at dmocha1223@yahoo.com. Preemie Power to all!