The Waiting Game

About three weeks has passed by and Lj has been doing great on room air. He had finally tried on his first onesie and his little eyes are staying open more. He still had his feeding tube in his nose, vitals monitors on, pulse oximeter around his little foot and an IV. With any opportunity I have him in my arms because I feel so protective of him. Lj's dad has been able to see him more often and when he holds him he disappears from site because he is still so little. He has been picking up weight but he still throws up an awful lot. His reflux creates breathing problems and heart rate drops. We are getting closer to going home but I am scared. He throws up so much here in the hospital, what am I going to do if he does it at home. Andre my oldest son was able for the first time to come and meet his brother on Christmas day but hasn't seen him since then except for through the unit doors. Andre was not allowed into the unit because it was Swine Flu and cold season. I was scared because I would have to juggle two kids now. They both have special needs and I was inexperienced in having two children in my life everyday.

After realizing that I would be gong home soon other issues started to peak it ugly head. Lj starting having digestive issues. He wouldn’t poop for days. I would explain to the nurses that he hasn't gone and they would tell me that babies can go up to 5 days without going. What alarmed me was my son's protruding belly. I would complain and finally he was put on medication to regulate him going. He was also given rice cereal to thicken his feeding. The rice was doing its job but then when Lj would spit up into his nose, the cereal would block his nasal passages. I would have to watch my son struggle for air and then when he would take a deep breath in he would suck the rice filled cereal into his sinuses and airway which would cause him to cough and choke. I was beginning to feel like this was going to be eternity. I hated to see Lj's dad leave to go to work. I hated being there all alone. At times I feel Lj's dad doesn't understand the trauma that I had to see. The tests that I watch Lj suffer through seemed to be so brutal.

One day after work Lj's day brings me the mail from home, which had been pilling up. I read a few letters and was informed that a few of my bills had disconnect notices. Knowing that this was going to happen, I talk to a social worker there at the hospital which connected me with a foundation that helped families while they were in the NICU. This foundation kept my bills from being shut off. I was more than grateful. Some days went by and I was informed that if Lj was to go home he would have to pass a car seat test, pass a hearing test, have an Ophthalmologist (eye doctor) check his eyes get an RSV shot, not have a heart rate drop for 5 days straight and have blood work done. I though yes, we are almost home and then my emotional rollercoaster started.

I started having the what if's. What if this happened or that happened. Then I felt like I wasn't going to be a good parent. I was upset because I knew that I was going to have to leave the baby to finish school. I was wondering how I was going to pay my bills. I owed so much back rent and I had no income coming in. How was I going to afford diapers and clothes for another baby? I was scared. At a meeting in the NICU Lj's doctor informed me if Lj went home he would require an apnea monitor. He had to wear this monitor all the time even during his sponge baths. Two Days had passes and he started having heart rate drops. No one could figure out why. Doctors took him off of the caffeine and figured it was his body learning how to regulate his bodily functions. I was still a nervous wreck when those lights and alarms went off. If you’re not a parent of a preemie but have a child let me share the feeling for you. Picture your child in a pool and he or she can't swim and they sink into the water with an alarm around them. Your child is locked into the pool surrounded by a fence that you can't break into. Just picture yourself looking into the pool knowing that this alarm is sound off  letting you know that your child is in danger and you need to help them but can't. That’s what it felt like to me. It was horrible. Lj didn't pass his care seat test. In a car seat test your baby stays in the car seat for three hours. They can not have a drop in any of their vitals. Lj had his heart rate drop. All of my learning classes were done. Lj passed his hearing but he had a series of tests that need to be done. So now it was time to wait for for everything to be passed and for Lj to bed developed enough to go home. The waiting game has begun.