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.

Wednesday, September 9, 2009

Spinning the topic wheel for the first time...

Round and round it goes, tick, tick, tick, tick, the topics whirl around, tick, tick, tick, tick (I'm building anticipation and excitement so that the reader will want to see how this turns out. Its a literary tool.) And our topic today is..."Doctor My Eyes". Awesome, I've got alot to say about Jackson Browne, been wanting to blog about him for years.

Jackson Browne, who's first name is actually Clyde, was born October 9, 1948. He is an American rock singer-songwriter and musician. His political interest and personal angst have been central to his career, resulting in popular songs such as "Somebody's Baby", "These Days", "The Pretender" and "Running On Empty". In 2004, Browne was inducted into the Rock and Roll Hall of Fame by fellow American musical artist and good friend, Bruce Springsteen. During the same year, Browne received an honorary Doctorate of Music from Los Angeles' Occidental College for "a remarkable musical career that has successfully combined an intensely personal artistry with a broader vision of social change and justice"....

Wait, no, I was going somewhere else with that topic. I apologize for all of the confusion. What I actually wanted to talk about was Thomas' eyes. I know, I know, another blog entry about Thomas, I'm in a rut. I'll revisit Jackson Browne in the future. Anyway, Thomas' eyes have been a constant source of angst and concern in the Elliot household. Let me catch you up on what has progressed.
I think even before Thomas decided to enter this world early, he wasn't playing with a full deck in the eye sight gene pool. Rebecca is legally blind (yup, that's how I got her) and everyone in both of our families has some form of 4 eyes syndrome. I'm the lone anomaly. I laugh at eye charts and read the manufacturer at the bottom just to show off. Thomas' time in the NICU and on ventilation led us to the tough decision about ROP surgery, which I documented here. Just as a refresher, preemies that spend a significant amount of time on ventilation grow an overabundance of blood vessels in their eyes due to the oxygen. This leads to a significant risk of retinal detachment. ROP surgery takes care of those blood vessels, but can have its own side effects, including limited peripheral vision and vision loss. I also documented our follow up visit to see how the surgery went and that we got an A-OK, but that particular doctor was only judging mechanics and we would need to go to a second eye doctor to see what Thomas could see. All along the way, there were mixed signals about how is eyes were. Many nurses and therapists commented on how well his eyes were tracking (following objects). On the other hand, we could never get Thomas to look at us when we were holding him. I felt like one of Donald Trump’s servants, completely invisible. So, time came to go to the Ophthalmologist, which is different than an optometrist in a way that Rebecca could tell you for hours on end, but it’s not really germane to our story so I won’t bog.
So the set up was another examining room, the doctor had Rebecca sit in the examining chair with Thomas sitting in her lap. The lights go out, the doctor sits on a stool in front of Thomas and the assistant or nurse stands behind him. I sit in a chair against the wall, observing. The lights go out and goofiness begins. So Rebecca is holding him, the doctor is leaning in looking through one of those things that shine a light in your eye and the nurse is holding one of those multi-colored lighted pinwheels they sell at the circus. So for the next 15 minutes, the doctor would hold up different combinations of lenses to each of Thomas' eyes while the nurse spun the pinwheel and attempted to get Thomas' attention. Seemed really goofy to me, but I didn't go to school for this stuff. In the end, the doctor gave his assessment.

He believed that based on him looking through lenses into Thomas' eyes that Thomas is extremely near sighted, to the tune of -7 in one eye and - 9 in the other. Rebecca's eyes were -10 before she got lasered just to give you the blindness reference point. Basically, he believed that Thomas could see about a foot in front of him, everything else would be a blur. This took Rebecca and I completely by surprise. My immediate thought was, how can you possibly tell that by looking through lenses at a baby who certainly isn't capable of reading an eye chart or telling us what he can see. The doctor assured us that he's usually pretty good at this (cocky) and that the logical next step would be glasses. Not in a few years, but right away. He then shared with us a pamphlet with pictures of babies and little children wearing the most god-awful glasses I've ever seen. They were all round, pastel and just plain not cool. Apparently for babies, the glasses need to be flexible, which I'm ok with and ugly, which escapes logic with me.

Much like the multitude of other times that a medical professional shared with us difficult information, we took it in with a bit of numbness and tried to be as factual as possible in our questioning. The important thing is to get his eyes help sooner than later so that Thomas' development isn't stumped. Laser surgery is not an option until the growth in his eyes stops growing, which is typically in a child's teens. The doctor also saw a slight nystagmus, which is an involuntary movement of the eyes, kind of like they dance back and forth. I believe this is related to weak eye muscles which would also be helped by glasses.

Not wanting to believe what was probably true, we chose to wait til after our impending visit to the Retina Foundation. Because Thomas is a preemie, this was another "perk" that he gets. We weren't exactly sure what this was about, but looked at it as a possible second opinion on the condition of Thomas' eyes. It was a couple weeks after the appointment, so we spent most of that time staring at Thomas' eyes, wondering if he could see us. It was very disheartening and frustrating. After all we had gone through, we had thought that we'd cleared all of the hurdles and were home free. Thomas seemed blissfully unaware and happy.

The Retina Foundation can be found in a non-descript office building. Much of the furniture seemed semi-mismatched, possibly donated. It did not have the same feel of success that the offices of all of the other specialists we had visited had. We started out with the requisite paperwork that comes with each new visit. Rebecca is in charge of this, while Thomas and I find ways to be entertained. From there, we were led into another waiting room. This is where we learned a little about the Retina Foundation. Basically, its a study, government funded I assume, around vision in babies. Most of the doctors participating in the study were actually PHDs rather than MDs. The test was fairly odd. Rebecca and Thomas sat at a table and a very clinically focused lady sat across from her. Although the study is focused on babies, she clearly didn't have alot of experience with or interest in babies as anything other than test subjects. In front of the lady were a stack of hard backed posters. On each poster, there were 2 squares, one of which would have vertical lines on it. Depending on the poster, the lines were either very broad decreasing down to so narrow it was difficult for me to discern. The whole concept was that a baby's eyes would be attracted to the vertical lines and they were testing Thomas' ability to track to those vertical lines. To make things more interesting, they put a patch over one eye, and tested each eye separately. So the lady would flash a card, Thomas would look at the poster and when she saw that he looked at the right area, she would say good, tell her assistant some code and go to the next card. To keep Thomas looking the general direction of the cards, she had a little device that would play music very loudly, over and over.

I found the whole thing kind of silly. Mostly because Thomas looks all around naturally, eventually he's going to look one way or the other. They repeated cards to minimize blind luck (no pun intended), but it still seemed circumstantial and anecdotal at best. After pushing Thomas' patience, we were thanked for our time. In relation to the tests, Thomas did extremely well and tested in the top percentiles within the study. The results go to the Opthamologist, but basically it was not really the second opinion we hoped for. So we're back to where we started and have resigned ourselves to getting Thomas glasses, but I intend to make them very cool, skull and crossbones cool! We go back to the doctor in October to get Thomas sized up. Rebecca has also reached out to her colleagues in the optometry world who have given her reassurance that technology is progressing really well and that Thomas should be able to see and function just like anyone else.

Its still rough. We spend alot of time worrying about Thomas' eyes. I want him to have every opportunity, just like any parent would and it feels like a real possibility that Thomas will struggle learning or not be able to participate in a sport or something. It weighs on both of us and the unknown is scary. Thomas is just darn near perfect and we really don't want to see him go through anything else. I think he's had enough.

Until next time I spin the wheel...

Thursday, September 3, 2009

Topic Teaser

Since we're all settling back in to this blog thing, I have multiple subjects that I would like to address that we can all look forward to. So we'll break out the topic wheel and spin away. Here are the titles, as revealed by Alex Trabek:

  • Doctor my eyes
  • Nap time for Thomas
  • Potent Potables
  • Nanny-cam
  • How many grades will Thomas be skipping
  • A Day in the Life
  • Thomas' First Word
  • States that begin with the letter A
And I have found proof that Thomas is ticklish...

Wednesday, September 2, 2009

Happy 8th month Birthday to Thomas

I'm going to just pretend that I did a blog yesterday and not a month ago and just move on as if nothing has happened. (They skipped like 10 years in the Lion King and noone seemed too worried about it.)

One thing I never want to hear when I'm out of town is Rebecca crying on the other end of the phone. Unfortunately, it happens sometimes. Each time I must establish that nothing is wrong with Thomas (a constant, unreasonable fear that I assume everyone probably has). If this was a movie I was directing, I'd insert a flashback scene to fill in the gaps and bring us up to speed on how we got here. In a blog, trying to properly quantify what Rebecca is feeling and why without writing an essay may be difficult, so I'll just try to hit the highlights.

Rebecca has to go back to work soon and we have begun the process of trying to identify someone to entrust with Thomas, without our supervision, a near impossible concept for Rebecca. We've tested the waters and the results have been mixed at best. I won't get into details at this time, maybe when time passes. The long and the short of it is that sometimes the porridge is too hot and sometimes it just tastes like dirt. So we're looking and hoping to find a Rebecca clone.

As the day closes in that Rebecca has to return to work, she has really struggled with everything we have gone through. It has gotten a little overwhelming to her just thinking about the journey, even through we appear to be through the worst of it. On top of that, the feeling that she wants and needs to be with Thomas is really pulling on her.

Everything is new and different. Our lives have settled into somewhat of a routine, although its nothing like either of us expected, or at times want. Responsibility has never been something I've aspired to and you'd be shocked at how much responsibility there is when it comes to a baby! I mean, its like constant. I can safely say that Thomas is the cutest darn thing in the world and much like playing golf where 18 holes of suffering are all washed away by an approach shot that lands on the green where you wanted it to go, even if you have know idea how you put it there, a single facial expression, giggle or movement from Thomas makes everything that happened up til then a distant memory. I mean really, how do you deny this child anything?

Before I go any further, I've posted a bunch of videos on youtube for your enjoyment. http://www.youtube.com/results?uploaded=m&search_query=melliot22&search_type=videos. Look for the most recent ones.

Thomas is 8 months old today, he weighs 11 pounds, 9 ounces and is about 22 inches long. Overall the doctors are all very pleased with his progress. He's on track for a 4 1/2 month baby, which is where they want him to be. He's laughing and making lots of noises, very ticklish and starting to really grow a personality.

Since I've last talked to you, we've been to an eye doctor, the retina foundation, the plastic surgeon, the pediatrician twice and a physical therapist. We've also begun ECI sessions in our house, where a therapist comes for an hour 3 times a month to work with Thomas to make sure he's develops his motor skills. Since its very late. I'm going to post this and I will come back shortly to tell you the stories of each of our doctor visits. There are some unique stories to be told. There are some medical things to addressed as well. I will cover them shortly.

Sorry this one wasn't terribly exciting or informative. Just needed to start somewhere.