Amazing Things..

So here we are... one month and a few days post-op and we have seen some amazing things. Our Myla June is doing very well. Some cool developmental things that most parents find fascinating, we find to be incredulous. She pulled herself up a couple of times. When she is standing, she now holds onto things for support and shuffles herself around. She actually made it around our coffee table twice today...commence baby proofing. She is doing some great imitation of movement. She waves hello; however, she typically uses her full arm and most of her upper body. She can do clap hands once in a while, and with her favorite football team playing some great football, we are working on "touchdown" for the big game. Myla's main mode of transport these days is her rolling. She made it completely across our living room to the door or more importantly, to where her toys are.

Lindsey has single handedly transformed our basement to a baby friendly playroom fresh with toys, foam alphabet/number tiles (thanks mom mom and pop), and bins for storage. I mainly stayed on the couch in my pajamas when this happened and consulted. I am an excellent and lazy consultant.

On to some frustrating and exciting news....We are strongly considering a full-time, intensive day treatment program to work on Myla's feeding. This is both exciting and scary. I wish we didn't have to "reteach" Myla how to eat, but now that her heart is fixed, there is no medical reason that she shouldn't be eating. She has good days and not so good days. A good day is when she takes about a tablespoon of baby food without a struggle. A bad day is when she is actively refusing to take anything, crying, pushing the spoon away, and turning away. As I have mentioned in many of my posts, the feeding tube continues to wear on me. As much as it was a means to an end to help our Beany grow and thrive, it really restricts our lives. We have to plan food shopping, driving, dinner, and doctors appointments around her feedings. Even though we have amazingly supportive family and friends (Faith Bass, you are amazing for taking on a crying Bean for an hour or so), we always hesitate to ask for babysitter volunteers because we know what hard work it is to care for her...and the tube is still a tube..It still sits in her tiny throat. It moves when she sneezes or coughs, sometimes causing her to gag and vomit. It bypasses the first stage of digestion, which is when saliva breaks down food initially. And finally, it opens....yes...as gross as it is, it can pop open. We typically discover this by a wet shirt, floor, couch with a nasty smell. Its kind of just like having a tiny hole that leaks stomach contents. Nasty.

Anyway, we have an appointment at the Feeding Clinic at St. Joseph's Children's Hospital in Pateron, NJ for February 1st for an evaluation. We hope to be admitted to their 4-6 week intensive day treatment program which is daily from 8:30-4:30. My next blog will be about the roadblocks that we are having with the insurance company when it comes to getting Myla into a different program. Thanks for reading.

Back to Work.....

I guess it was inevitable. A result of Myla June’s amazingly quick recovery was that I had to end my tenure as a stay at home dad and return back to work. My feelings on this issue were mixed, and by mixed I mean 90% sad and 10% excited. As much as I might complain about the frustrations of my job, I do enjoy certain things about it. I enjoy the steady paycheck (which was/is sorely missed over the past three weeks). I miss the challenge of working in a school. I enjoy the collegial/team atmosphere as well. I guess those three things are enough to add up to the 10% of excitement. I was sad to leave the comfort of my home. I was sad to not be able to spend time with my beautiful daughter and catch all of those little amazing things that she does throughout the day. I was sad that I would no longer have the ability give my wife some well-deserved time off, even if it means 30 minutes more sleep, 30 minutes to take a shower, or 30 more minutes to just relax.

My first day back was not nearly as stressful as I feared it would be. This is thanks to my colleagues, who though would not admit it, went out of their way to ensure that I did not have a pile of work on my desk upon my return. They took the brunt of kids in crisis, angry parents, and stacks of paperwork that we deal with on a daily basis. I also came back to an environment of care and concern. I was greeted with “welcome backs” and “I am so happy to hear things went so well.” This was nice.

Myla is almost three weeks post-op, and she continues to thrive. Her scab has completely fallen off of her incision leaving a 2 inch long pink scar. We have a doctor’s appointment (actually 2) on Thursday, and we hope to be able to start caring for her scar with mederma and start some of the scar stretching techniques that we were given at the hospital. We also have our first Gastro appointment. We hope that Myla has gained weight since her hospital stay. Lindsey brought Myla to see Nancy, our feeding therapist, on Monday. She was so impressed with Myla’s progress. She is eating more baby food. She is expressing excitement in eating and has now developed a love for pickles and pretzels. She took a little from a bottle with the feeding therapist and the therapist wants to speak with our GI doctor about beginning to wean Myla from the feeding tube. My expectation is that this will be another very difficult process. Though Myla has a newfound excitement for food, she still does not associate eating with satiation of hunger. She needs to feel hunger. My sense is that she needs to feel hunger multiple times per day and then eat enough to make that feeling go away. This could take a while. It also could mean less sleep back to the days of stressing about her eating and fearing the weigh in at the doctors office. The upside, however, clearly outweighs the downside. I can’t wait to see her beautiful face without “tubey” stuck to her chunky little cheek. I get overwhelmed when I think of the idea of Myla being an independent eater. It’s something so basic and so fundamental, but for Myla, it is also something that is terrifying. Eating used to hurt her so much. It will take time, but I know my little girl will be eating. Our goal is to have her eating birthday cake by May 19, 2012. One journey ends and another begins.