Wednesday, November 24, 2010

Time For Testing

Well Lj has been in the transitional unit for about a month but on this particular day a nurse said that we needed to be moved to another room because someone else in the unit had the same last name as Lj. We went to a new room. We moved to room 406. Once we were settled in, it was time to concentrate on getting Lj home. But before he could be released he had to go through a series of testing and learn how to get his feedings from the bottle/breast. His first feed was by a syringe that was fitted with a nipple. He didn't take much in. He took in 40ml's. As time went by he would take in a little more but we didn't force it. Next we started on his testing, these tests were not always easy and they seemed to be definitely painful for him and emotionally painful for me. The first test he had was very hard to watch. He had to go and have his eyes tested for ROP. This test was so brutal to me. They put these drops in Lj's eyes and waited for about 30 minutes for the medicine to dilate his pupils. Then I had to pick Lj up with his feeding tube still placed and all his vital leads still on and  I had to take him to a procedure room where they strapped him down and held his head in position for the doctor to look into his eyes with a special lens. The doctor took his fingers and pried Lj's eyes open and placed this silver metal retractor in his eyes. This thing seemed like it was going to rip his eyelids because the retractor had these little metal flaps that fit under Lj's eyelids to open the eye as wide as it could be opened. While my little baby screamed and kicked and hollered for mercy, I had to stand by crying right along with him and let the staff do their job. To watch this thing pull his eyelids apart made me feel so bad. It looked so painful and from the sound of his high screech it was just that. PAINFUL! Once that test was done the doctors came into Lj's room and told me as of right now his eyes looked to be okay and that I needed to see him in 2 months for the same test. I was so upset that Lj would have to go through this test again. After the doctor left a nurse came in and told me that Lj could have his feeding tube taken out. I was so excited. This would be the first time that I would get to see Lj with nothing on his little face.

Once his NG tube was taken out he began to take his feedings by breast and bottle. He still was having trouble keeping his food down but he was gaining weight. Lj was old enough to come off of the caffeine, so doctors wanted to keep him off of the caffeine and let his body learn how to regulate his heart rate and bodily functions.  Doctors decided if Lj had any heart rate drops from now on that he would not give him doses of caffeine. Maybe a week went by and now we had to give Lj the car seat test. He got into the seat and made it to 2 hours and 50minutes and he had a heart rate drop. So he failed the test again. What happened was he spit up and it went into his little nose, which in turn caused his heart rate to drop. Doctors scheduled a Modified Barium Swallow for the next day because doctors thought that Lj was still aspirating into his airway. This test consisted of the baby being placed into this chair that reminded me of a baby car seat and he was to drink from a bottle filled with radioactive barium. The camera recorded his swallowing sequences. It did show that he was aspirating a little so his milk was then thickened with a thickener. Once on the thickener his digestive issue came back. I felt like we were never going to go home. Every time it seemed we were going to make it home something happened. I started running into problems with my older son. He started feeling like I didn't care about him anymore and that I had replaced him with the new baby. I felt so bad because I loved Andre very much. I explained to him that I was staying away from him to be with Lj because Lj couldn't take care of himself and that he could because he was older. I didn't know how to divide my time up between them both. I was so frustrated. I was so emotional because I kept thinking that this is my punishment for not doing what I could to keep Lj in. I felt like my punishment was watching my baby son go through this early part of his life with pain and suffering and for my older son to feel abandoned by his own mom. This was definitely a test for me because my patience was being tested. My faith was being tested. My relationship with my son and Lj's dad was being tested and I couldn't take it seemed. I started prying that things would get better. So from that point on I tried to rely on faith and that things would work itself out. To Be Continued......

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