Bad news AND a bad day for Cady and me.

I've been keeping this mostly to myself for a couple of days, but I feel it's time to share. We had an absolutely awful day on Thursday.

Cady was seen by a neonatologist for a follow up. (The hospital where she was born has a follow-up clinic where they follow the progress of all babies who spend time in the NICU.) As we are going through the exam, the neonatologist is asking me all the usual questions and he asked me what her neurologist told me. I reported to him that she told me that while she can't say for certain what her future will be like, she is encouraged by her progress so far and she might just be "clumsy." He seemed somewhat surprised by that and said he believed that was a "gross understatement" and asked if anyone had ever mentioned Cerebral Palsy to me. I said they had while she was in the NICU, but not since then. I said, "Why? You think she has it?" He said, "Oh yes."


Now, at first I wasn't too fazed by that. Technically, if you look at it's definition (Cerebral palsy (CP)is an umbrella term encompassing a group of non-progressive,[1] non-contagious condition that cause physical disability in human development. - Wikipedia), she does have it. Her condition isn't going to worsen, is not contagious and her physical development is impaired. However, as we were talking, he really began to upset me. He seemed nearly certain she has CP and came short of giving her an official CP diagnosis. I asked if she would likely have a mild case and, not in these words, he told me while it was possible, it was probably hoping for too much and that her case would likley be too severe to be classified as "mild." He said at this point she should have full head control and the tightness in her arms and legs were of a serious concern to him. Umm...ok...?

We knew this was possible, but considering how well she appears to be doing, I was somewhat shocked and, naturally, very upset. Her PT thinks she is making great strides, her doc thought she looked great at her 6 month check-up and I have noticed some big improvements in her all around. Therefore, I am trying not to put too much weight in what this doctor said. This was only the second time he's seen her and it was just a snapshot. We had woken her up for the exam and so she was tired and getting hungry. He did say he could be wrong and he hoped he was. He said we are doing everything we can for her now so to keep doing what we are doing and come back in 6 months. Even though we are trying to stay positive, I am really having a tough time dealing with this.

If that weren't enough, the day actually got worse after that.

When we got home, it was total chaos. Cady was supposed to have eaten at 11, but we didn't leave the doc's office until almost 1. As soon as we got out to the car, I started her feeding, but when we got home, I paused the pump for a minute so I could bring everyone in the house. Once we were in, everyone was up in arms. Kiefer was screaming and clawing at me for no reason, Callia was bugging me about something, and Cady was crying to get out of her seat. I unbuckled her and in my haste, forgot to check where the extension attached to her button was (we are usually very mindful of it when picking her up and moving her around). As soon as I realized what I did, it was too late. It got caught on the little slits where the seatbelt would go were you to not use a base and ripped right out of her belly. For those of you who don't know, the way the button works is there is a narrow piece with a balloon on the end that you stick in the hole in her belly. Once it is in you, you fill the balloon with water and that is what holds it in place and keeps it from coming out of her belly. The size of the inflated balloon is about that of a quarter. It, in tact, came right out of her belly. Cady didn't skip a beat. I swear she didn't even feel it. She was happy and smiling and, to be honest, I think she enjoyed the few hours it was out.

Oh yes, I said a FEW HOURS.

After it came out, I had to hold my hand over her belly because I didn't want that little bit of formula that she had to leak out. So, one-handed, I try to get everything together to replace it. Kiefer is STILL screaming, as he was tired and hungry, as well, and I just can't do it. Luckily, I knew my sister was in the neighborhood visiting a friend, so I called her and asked her to come by and help me. When she got here, I had her hold her hand on Cady's belly while I got everything together. When I went into the box to get the new button, I found that it was gone. Now, I had opened the package a few weeks ago to use the extension that was in there since we were out of new ones and I needed one. I looked all around for it, but it was nowhere to be found. I figured it had somehow gotten lost since I opened the package.

I call the medical supply company to ask if they can get me a new one. They looked and it was in stock. I taped gauze pads on Cady's belly, left the kids with my sister and drove to get the new one. That took a little more than a half-hour, so all said, it had been just over an hour by the time I tried putting the new one in since it came out. Well, try as we did, Kerri and I could not get the button in. It was too soft and kept slipping all over the place. I call the surgeon's office and they tell me to come in.

So now I have to wake a miserable, sleeping Kiefer to get him in my sister's car. She was going to watch them, but she had to get home to her daughters since her fiance had to go to work. (Oh, and as we were walking out my front door, I found the missing button on the floor.) We get to the doc's office and wait ANOTHER hour and a half to be seen. At this point it's been out for more than 3 hours. And guess what? He can't get it in either. So, the plan of action is to insert a smaller catheter into the hole and increase it in size until we dilate the hole to the size of her button. The first one goes in fine. The second one she whined a bit but it was ok. The third one, which was the same size as the button, wouldn't go in. Becauase they are soft, it kept slipping and sliding. So he goes and gets some harder stick-like catheter that won't move when you pierce it in and he jammed it into the hole. O...M..G. I never, IN MY LIFE, heard any child of mine scream the way this child did. I am usually pretty good at dealing with seeing my kids in pain (like stuff like shots doesn't really bother me), but it was all I could do to not cry. So after he gets that in, he goes to put the button in. She is SCREAMING and wiggling all about. I hold her legs down while looking in the opposite direction. He tries and tries and once he stops, I assume it's in. I look over and not only was he not successful, there is a small pool of blood about the size of a nickel on her belly. He assures me this is normal and we try again. This time I won't look until he tells me it is in, tears welling in my eyes.

After we are done, Cady, who at this point still hasn't eaten since 8 a.m., except for that little bit she got in the car on the way home from the Follow-up Clinic, screams for another 45 minutes before passing out. I felt so bad for her. I gave her some pain reliever once we got home and in the morning, she seemed fine.

Gah!!