New Hope

I haven't taken the time to update about our week. Caleb had his MRI on Tuesday in Columbus. It was a nightmare day for us. His test was not scheduled until late in the day and so he could not eat or drink past 6 am. He was hungry and tired and cranky and threw probably the biggest fits of his life, in the car on the way up, in the reception area of the MRI, and later while the nurse was examining him. We watched a video on the test, went over his history, signed the consent forms and then waited. They score every patient before the test and Caleb scored a four which requires an ENT consult and stand by during the test; if you score a five, they do not do the test.
I should mention that Jason and I were very anxious going into this test. Caleb has had procedures before but this one was probably the most nerve wracking. We were both remembering the moments after his last surgery when they brought him back to us and he went apnic and had to be bagged. He didn't do well with anesthesia that day and so we were nervous about this time.
Our nurses were wonderful and understanding to our screaming, fighting mad little boy. We had to help hold him down for the iv and it's always so hard for me. Caleb can't stand to have his hands or feet touched because he has had so many iv's and needle pricks. He's pretty sensitive about it and here we are forcefully holding down his arms so they can stick another needle in. Our nurse was skilled and was able to get the iv in the first time although she did remark about all of his scar tissue. She also said usually with preemies it takes the full dose of anesthesia because their bodies are used to fighting. I smiled and told her I was already familiar with Caleb's fighting spirit, you can't make this boy do anything he doesn't want to do. She was correct, it took the full limit of medicine to put him under. Jason said that was the hardest part for him, seeing Caleb so limp and lifeless, it brought back many memories. I think it was hard to reconcile those memories of a tiny sick infant to the vision of Caleb now big and stronger lying so still. The test took about 25 minutes, we were in the room with him. Afterward, Jason picked Caleb up and handed him to me and I held him until he woke up. I sat in a rocker with him, so soundly sleeping, and just enjoyed the moment of holding him. He doesn't sit still long nowadays for moments like that. The nurses started to urge us to gently wake him up because he wasn't waking up on his own. The gentle urging turned into moving him to an exam table, jostling him around, undressing him, wiping him down with cold rags, and finally a sternum rub to wake him. It took him much longer than normal to awake and we began to feel a little panicky. As soon as he awoke, he tore at his iv, and I said, "Ah my fighter is back." We stayed a little longer to make sure he could hold down liquids, were given our discharge instructions and were on our way out the door. Not twenty steps down the main corridor of the hospital and Caleb vomited everything down the front of me. He kept vomiting and so we headed back from where we came. The nurses kept us a little longer, changed our discharge instructions to not feed him for a few hours and for one of us to sit beside him in the car on the way home. He was very floppy from the medicine and his low muscle tone. Jason drove home. I sat beside Caleb who slept the whole way home. I rode home in my bra covered by a small blanket because my shirt was disgusting and I'm super classy. Our evening home was long, but we both did feel relieved that the test was over and although we had a few uncomfortable minutes we had no major drama, no machines going off because his heart rate was too high or his breathing was too low. Into the next day Caleb was still dizzy and unbalanced, he would fall over sitting in his crib. He wanted down to play but then would fall and he just was not a happy boy. Around one yesterday afternoon our phone rang and it was our neurology office. We were told to not expect results until Tuesday and so I was a little nervous answering the phone, not knowing what to expect. Can I tell you they took forever to spit out the results! The results were great, no evidence of brain trauma from birth or underlying condition. Our neurologist still wishes to follow us due to Caleb's delays but the news is incredible. I can tell you I feel so much lighter. I didn't realize how much anxiety I was carrying around. I have a renewed sense of hope. It often felt like all of this struggle would be neverending and now I feel it's only for a season. We aren't sure how long the season will last and there is still struggle in it but hope is an amazing, motivating thing.

I think, no, I know I am just hesitant to share, that I have released some of the guilt I carried for so long now. I might touch on that a later time; it's a new awareness I haven't quite processed fully.

So good news in our household. The news felt as good as when I discovered I was pregnant each time; new life, new opportunity, new hope. I feel like I have let go of some things and embraced more of the future I was fearing.