Good & Bad news.. #13

January 3rd, 2012 - Today Isaac had his barium xray done. Which is a contrast xray, similar to a CT scan. The xray shows the large intestine, the colon and rectum. He had one when he was first diagnosed in the NICU. And it was absolute HELL. They have to strap him down to a board with his arms above his head.. He screamed the whole entire time. It was so hard for me to watch or listen to. I stood right next to him even though there was nothing I could do to calm him. The surgeon ordered this procedure so she could see why they were seeing inflammation and a stricture in the area where he had his surgery.  They wanted to see if the the inflammation had decreased since he was released from the hospital a couple weeks ago. They didn't know if there was a kink or twist in the bowel or if there was some abnormality from the surgery so she wanted to make sure the inflammation was allergy related.

It took about 30 minutes. As soon as they were done taking the pictures we unstrapped him and picked him up. He was so upset. He was like hyperventilating almost. I was so upset I was crying myself. You know when you cry so hard you start doing involuntary sniffing and whimpering. Well he did that for about 20 minutes. It broke my heart! After the radiologist reviews the films, we packed up and headed across the street to his surgeons office. Luckily we had an appointment with her an hour after his procedure so we would know the results right away. I hated waiting. And I think she knew that. So she scheduled us to see her right after.

We waited in the room for the doctor to come in. I was pacing the floor. The rooms are incredibly tiny so I pretty much did 2 steps and then turn, did 2 steps, and kept repeating that over and over. My heart was pounding, my hands were sweaty, and I was shaky. When the door opened I wanted to just open my mouth and start asking questions. But I sat down and tried to remain calm so I could  understand what she was saying.

Good news or bad news first, she asked. My heart sank. Bad news? There's bad news? She told us the good news was he did not have any abnormalities from the surgery or any other serious complications, BUT the area she was concerned about was still a little narrower than her liking. So what did that mean? She said that she wanted to go in with a little scope and take a look at the area to make sure no scar tissue was forming causing the stricture or that there was not a pocket of infection that can sometimes form. Sometimes scar tissue can form which requires a cosmetic type surgery to fix. She said she also felt better that she would know exactly what was going on. So she wanted to do an exam under anesthesia next Monday the 9th. It was like a day surgery. But he did have to be put under anesthesia.. Again?

So I guess all in all, it came out in a way we were hoping for. Nothing too serious was going on and after next week we know for SURE what we were dealing with. Until then, be nervous as HELL.

It has only been a few hours? It feels like 8 days already.. #3

We finally had a time for the contrast xray.. Early afternoon. Isaac was sleeping comfortably. He was sucking on a pacifier like a mad man. That was the most action I had seen in his little mouth. As you could imagine him being all backed up made him not hungry. I mean come on guys if you couldn't poop would you want to eat anything? (Trying to have some humor here :) ) The catheter was basically allowing him to poop. It looked so uncomfortable but I knew his little tummy felt so much better. As for the suction tube down his throat, well that was for the birds. He didn't seem to mind it though.. At least not for now. 

We decided to leave the NICU for the first time since he had been admitted. Thought eating was a good idea. I felt guilty eating because my son couldn't eat. So why should I? I mean now that his stomach felt better I'm sure he wanted to eat. But because they didn't know what was going with him, he couldn't eat at all. But we decided to walk back to our room and then go to the cafeteria.  We didn't even make it half way and the NICU was calling my cell phone. I totally freaked out. To this day I still have NICU programed in my phone. They told us there was an open spot for his xray immediately and we needed to get back there. I was so happy because that meant answers sooner, but then I got scared. Um is his condition getting worse, is this an urgent matter now? I don't think I could have walked any faster with out breaking out in a full speed run.

When we got back there they told us they were waiting for his transport. What? Transport? Where is he going exactly. They told us the transport babies in an enclosed little bassinett.. Kinda looked like a mini incubator. It allowed them to keep all his machines going.. Ah makes sense. I mean did I really think they were going to unhook the 5 machines he was hooked up to? Just as that thought left my mind, transport arrived.

He had 2 NICU nurses escort him to xray. And then there was the radiologist and his 2 assistants in there. The room was packed. We had a little celebrity there. I could barely keep it together. I was such a mess. Crying hysterically, could barely even stammer any words out. Luckily my boyfriend Jose is more level headed than I am, so he kind of kept me focused. I really thought this xray would be fast and easy. I was so wrong. They had to strap my little baby down with his arms above his head so he wouldn't move. If he moved they wouldn't be able to get all the films they needed. I felt like a terrible mother. A failure. My baby was screaming his head off and I could do nothing for him. This whole process seemed like it took forever. I don't know how I survived that but I did. It broke my heart into so many pieces. I just wanted to pick him up and take him home. I had never "planned" for this to happen. This is where I stopped planning things in my life because when you plan things they always seem to never pan out that way.  That was definitely the worst moment of my life.. I had to step out because I just couldn't take it. He was crying for me. For me to stop them from doing this to him. What a rude awakening to the world. This wouldn't be the first time he would be hurt and be in pain. I wanted to take his place so desperately. I kept asking God to comfort him and to protect him. And also for him to forgive me for putting him through this. But I knew that this was to make him better.. I had to keep that at the forefront.

I was hoping to get answers immediately. I was trying to read all the medical staffs faces in there but I really couldn't tell much of anything. I was told after the radiologist did his review and the surgeon did hers, someone would let me know. Let me know? I mean can't they just tell me now? It wasn't like a quick look like a broken bone? Wait? They obviously didn't understand who I was. Waiting is not in my vocabulary. Impatient was. Ha, after that day I learned that I had to be patient. You learn a lot of things very quickly when you become a parent.

When we arrived back in the NICU we sat by Isaac's bedside and waited. I'm not sure what time we heard anything but when we did, we kind of knew what we were going to hear. He needed to have the suction biopsy to confirm the diagnosis but the surgeon was 99% it was Hirschsprung's. She told us tomorrow, which was Tuesday the 11th of October, she would do the biopsy but it would take at least 2 days to get the results. Another waiting game. In the meantime, nothing with his care would change. So there I sat, all day, all night watching my baby. I was able to hold him most of the time.. I was so thankful I could hold him. It was difficult with 3 leads, 2 IV's, a tube in his mouth and one coming out of his rear but I made it work because I know he needed me to hold him and cuddle him. He slept mostly but when he would open those eyes and see me there, he would just stare at me. I knew he was being strong for me. I smiled at him all the time. I never liked him to see me crying. I felt like he would do better if I kept my spirits high and smiled a lot. I told him about his nursery at home, about his monkeys on the walls, about all the toys and clothes we had for him. (Side note: I am sitting here in tears reliving this) But telling him all this made me so sad inside. He was supposed to be home enjoying all of this NOW. Not laying in a bed attached to all these machines. I just wanted to fast forward to that day we would bring him home.. Whenever that was..