Tuesday, September 22, 2009

Another Day Another Surgery


As always, there is much to catch everyone up on. I will leave the title hanging for a moment as it fits within the context of the storyline later on. First I will give you a week's retrospective on Rebecca's triumphant return to the real world. Hence the picture to the left.

Rebecca has been fortunate enough to spend the summer with Thomas. It has been very important for her and for Thomas, as Rebecca has really struggled with the pregnancy ending early and being separated from Thomas while he was in the NICU. She worries alot about her connection with Thomas, but I see it every time she holds him, how he knows who he's with. There's a wonderful calmness that comes over him when she's walking him around on her shoulder and he's looking back chewing on her shirt. Its a tough thing as I'm not in a position to really understand. Rebecca feels like she missed something, and although we've been given an amazing gift, and even what I like to call bonus time with Thomas, its not the same and can be a little overwhelming. Rebecca often finds herself reliving the NICU and the surgeries and all of the doctor visits, therapy sessions. Its alot to deal with. I don't know if its a gift or not, but I just accept what it all is and where we are and try to move on. Look forward, not back and all that stuff. For me, I can easily get overwhelmed by the present and future, so maybe I have selectively blocked out the past. It already feels like ages ago. Its all really a blur.

We both knew that Rebecca would have to go back to work, unfortunately Thomas being on Rebecca's insurance. The original plan and thought was that Rebecca would want to go back to work under normal circumstances. She didn't originally picture herself as a stay-at-home mom. Now that it isn't quite the same situation, it has left her torn to say the least. She was supposed to start 2 weeks ago, but due to the original false starts on the nanny front that I will get into in a future post, she pushed back to last week, so that we could find the right nanny, which I am glad to say we have. Because of Thomas' immune system, day care is not an option. We had this grand plan to have Rebecca spend a few weeks with the nanny, break her in and get a comfort level all the way around. With the compressed schedule, Rebecca got 1 day and then I planned to stay in town and play Mr. Mom while the nanny got adjusted.

My part was easy. As Rebecca's apprentice, I knew the gist of the routine, although I am a poor substitute for the master and my mistakes are easily identified in our nightly reviews of my performance. Additionally, my job has taken me away every week, so I was always used to being away from Thomas. Not so much for Rebecca. Her breaks have been few and far between. So the night before her first day back to work was fairly rough. She didn't sleep much, cried a lot and worried greatly about Thomas. I think it was a little easier knowing that I was home, and as I said before, we've found a nanny that has connected well with Thomas and approaches Rebecca's exacting standards. It has been challenging for Rebecca actually getting to do her job. For some reason none of the people in her office want to talk about eye products... Rebecca is slowly adjusting and she maximizes her time with Thomas in the morning and at night.

I found last week fairly interesting and difficult in a different way. Monday was just Thomas and me, so it was all potato chips and 80s teen movies for us all day. Kathy (I guess its fair to refer to her by her name rather than a nebulous title) started Tuesday, and as I said, she's great with Thomas. He really responds to her well, she's doing the exercises that the therapists want and Thomas has made amazing strides in one week. So we're very pleases. I was working from home, so I was really there just to guide and answer questions. What was really difficult was letting Kathy handle things when Thomas got upset or needed attention. It was very difficult to suppress my instinct to take care of my son, to allow Kathy to do her job. It was so difficult in fact, that I had to, at times, find things to do away from the house. It was just unimaginably harder not to scoop Thomas up and hold him than I could imagine. I'm not sure I'll ever get used to that, but we'll see.

So what does any of this have to do with the title of this blog entry? Nothing really, I had wanted to write about the stuff above, so I just squeezed it in. So, yes, it does look like Thomas will be getting another scar. I know I'd mentioned Thomas' hemangioma on his bottom, which is healing extremely well and we don't anticipate any more laser treatments. I think I had also mentioned that Thomas had a dimple at the base of his spine. We noticed it while treating the hemangioma and brought it to the attention of the doctor. It kind of looks like the skin on his bottom was fused together a little. The doctor said that a dimple such as that could also be an indication of a tethered spinal cord. So we scheduled Thomas for an MRI, which we took him to get a week ago last Saturday. That in itself had its own little trauma, because they had to put Thomas under, which makes Rebecca very nervous. You can tell a baby as much you'd like that they can't move for an hour, but they rarely listen. So another trip to Children's hospital at o'dark a.m. Thomas did very well, came out of the MRI hungry and a little cranky and then chose not to sleep for the rest of the day.

We had hoped to get the MRI results some time last week, but no luck. We knew however that we would get them yesterday when I took Thomas to the pediatrician for his check up and immunization shots. Thomas had to get shots in both legs, which he was none too pleased about, but handled very well. He only cried for a second on each one. They were also very pleased with his growth. He's 23 inches and 12 pounds, 11.5 ounces. We've even gotten the ok to start introducing rice cereal to his diet. The doctor also came back with the MRI results at the end of our visit and let me know that Thomas does have a tethered spinal cord. Basically (and this is EXTREMELY basic, because I don't totally understand it, A spinal cord should be free at the base, but sometimes, especially in Preemies, it becomes attached to something. This can cause many issues if left untreated, including muscle weakness in the legs and orthopedic issues. Because it is the spinal cord we're dealing with, a neurosurgeon must perform the operation. We haven't met with one yet, so we don't know what exactly is involved in the surgery, what the risks are or when its going to happen.

I'd like to say that by now we're both used to this stuff, but the truth is we're not. The pediatrician said that she has seen this condition alot, so hopefully the procedure is routine. It is very distracting though. You would never know it by looking at Thomas what all he has been through. He is so lively, happy and laid back. He loves playing and laughing and he's learning to sit up. I'll post some pics and videos when I can.

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