Thursday, July 9, 2009

Remembering Surgery

There are three dates tattooed onto my heart, July 5th and October 1st of 2007 and soon-to-be July 23, 2009. This list of dates, hardly random, represents the place and time a sweet, undeserving boy named Isaac had to have surgery. I'd love to say that each surgery gets easier, but that myth lives far, far from truth. Life and logic teach us to believe and expect for things to get easier with practice, but watching your child experience surgery is not one of these.

The first surgery, with lots of bitter-sweet, was greatly anticipated and dreaded at the same time. Even though the immediate, tangible benefits of the lip repair were exciting, they made a rather poor anecdote for the many concerns of surgery on an infant. So many questions; so many unknowns.

Since Isaac's first surgery was the day after the fourth of July, I happily spent the day before playing outside with the family instead of packing for the hospital--a somewhat regretful decision I wouldn't recommend. Later that night, I remember capturing some of the cutest pictures of Isaac--his blue eyes dancing with a face FULL of smiles. I knew that after surgery Isaac would never look the same again, and the biggest phase in his life, up to that point, was coming to an end. Despite all that surgery number one entailed, it was still a hopeful day of new beginnings for Isaac and good-bye to the cleft he was born with.

The journey to the hospital started around four o'clock in the morning. Our two hour, mostly peaceful drive to Atlanta could only have been a gift from God above. Pedialite, then acceptable four hours before surgery, and his wub-a-nub kept him soothed during the car ride.

Approximately 30-45 minutes after signing in, we were called back to pre-op. All of my focus during travel-time, lobby-time, and pre-op time was centered on keeping Isaac calm and peaceful. I did not want to see him get upset and not be able to feed him. Between the medicine given during pre-op and lots of God's grace, Isaac stayed calm before surgery. He was, however, completely unimpressed with the hospital gown; apparently, those rascals are indignant at any age! At last, the nurse came to take Isaac. I remember that he liked her voice and was surprised and thankful to hand her a happy Isaac. Following her through the pre-op area, I knew our paths would quickly split. Her destination, a sterile operating room hidden behind big, heavy doors, ours an anxious waiting room and a call from the doctor that couldn’t come soon enough. Friends and the freshly baked cookies they brought were a great distraction.

The check-in coordinator notified us when surgery was over and we talked to the surgeon on the phone from the waiting room. Finally, I was on my way to the hospital room to get my Isaac back. Not even the tall, lanky legs of an NBA player could have kept up with me. We met him in the hallway as they were wheeling him into his room. His little sleeping body was swallowed by the giant hospital gurney. I couldn’t help looking at him and touching his little for-head right there in the hallway. He was still my Isaac and yet so different at the same time. The relief of having him back was very short lived due to what I know now as “anesthesia melt-down.” Children can be very violent and agitated when they are coming out of anesthesia. Isaac was certainly one of these. Even though I had heard of the melt-down, nothing could have prepared me for what happened next. The nurses barely propped pillows on my arm and placed him in my arms before he started a terrible fit of crying. Because he had a fresh scar on his lip that had to be protected and not touched, Isaac wore soft splints velcroed around his arms. This prevented him from bending his arms so his little hands couldn’t damage his surgery and made holding him horribly awkward. My first instinct to hold him close and snuggle him was not an option because his mouth couldn’t rub against me. Regardless of being able to hold him or not, there was nothing I could do to comfort him during the anesthesia meltdown, nothing. I felt so helpless during those intense minutes before he calmed down.

Thankfully, the minutes when Isaac was coming out from the anesthesia and the trauma of not being able to comfort or hold him passed, and I created a way to hold him close with his head propped on a pillow. I gladly paid the taxation it put on my back to have a safe and soothing way to hold him. He slept throughout the majority of our hospital stay. When he woke up fussy I didn’t hesitate to call the nurse for more pain medicine. It was a strange feeling to be that aggressive at calling the nurse to give my infant drugs when he was uncomfortable, but I’m certain it was the right thing to do.

I tried to give him formula, but he was not interested. The breast milk I brought to the hospital is something I would do differently. I should have given him all the banked breast milk before the surgery, when he actually cared to eat, because the pumped stuff I brought with us just went to waste. Eating after surgery time is touch-and-go at best.

In the midst of aftercare, I was amazed at Isaac’s new smile. He was still Isaac but he looked so different, I had to keep soaking it in. Looking back, I find myself more and more thankful for the wonderful pictures I have of him before his surgery. We celebrated his new smile with lots of pictures as well.

I could NOT function after surgery without my all-star, Mom. She comes and takes care of everyone else, and myself, while I take care of Isaac. Thanks to her, he can be my one and only focus. I can’t say enough about the support and comfort she brings to me. There’s nothing like having your mom with you in the middle of the night when things get tough. She also gives me a worry free place to leave my six-year-old daughter while we’re at the hospital. Imagining surgery time without her is an unbearable, most unthinkable thought! Thank God for a mom and husband to love me through!!

Monday, January 26, 2009

NAM!

Hey Mom, it's me, Isaac!! One day we're going to really laugh about getting up at 4:00 in the morning to drive to Atlanta for my NAM adjustments. Three dollars a gallon for gas might even be funny one day, too. Okay, maybe not so much but I am looking pretty cute in this NAM thing.

It's all coming back to me now. This is the point in my life when I became obsessed with coffee. It's a love affair that continues today! Long live the coffee bean!
(Mom, while we're on the topic of beans I'd like to bring to your attention that the one up my nose is starting to get a little out of hand.)

The NAM is a retainer of sorts that helps in three different ways. It brings the lip together, along with the palate and also holds the nose up in preperation for surgery. It is tremendous work and committment that brings with it great rewards. As a parent nothing feels better than
knowing you're doing everything possible to benefit your child.

At one-month-old we took Isaac back to the cranialfacial clinic for a long day of appointments. We saw the occupational therapist and nutritionist (to make sure Isaac was getting enough to eat), the surgeon, and also the orthodontist. This is when Isaac was fitted for the NAM. If you've ever had a mold done for braces this is exactly what they do to the baby. It's a little stressful but only lasts for a few moments. The mouthful of goo is to get an impression of the mouth so the NAM can be created to fit your baby's mouth. They actually hold oxygen by the baby's nose while they're getting the mold. I didn't feel like the oxygen was "close" enough to Isaac and actually grabbed the nurse's hand and held it closer to his nose. Mamas of any temperment: bold or timid, loud or quiet can find strength and courage they never knew they had to do things for their kids. Sometimes protecting your kids and social manners will not see eye to eye. It's okay; follow your instincts!




Two weeks later we went back to get our NAM. Between the fitting and the delivery date we started taping Isaac's mouth with the tape they had given us. We were already starting to train his mouth to come together!
At six weeks old we started wearing the NAM. He was so tiny then!! I held him, rocked him, and walked him a lot convincing him this was a good idea. He slept with it in pretty well as long as I waited until he was good and asleep before putting it in. The more they wear it the more it helps them. It was good for us that we could take ours out. Isaac wasn't found of eating with it in. In fact he thought that was a terrible idea!


After a little practice you get skilled at making the tape. It helps to have some made up ahead of time early on and then one day, like magic-looping the tiny rings through the tape doesn't seem so difficult anymore. You learn how to slip the appliance out for feedings and then slip it in on 'em after their sleeping. I think people were more curious about the tape on Isaac's face than anything else. (Lots of time in public I gave Isaac a free pass from wearing the NAM so I could buy groceries in peace. A mom's gotta do what a mom's gotta do!)



At first, the visits to the cranialfacial center were weekly and then bi-weekly. Then, closer to the surgery we went weekly to get the most results as possible before game-time. Commuting in Atlanta traffic can be about as pleasant as a root-canal at times but well worth the benefit it was bringing to Isaac. It was encouraging to see the results and know that it was really working. We could actually see the gap in the lip and gums closing.

Isaac,the ultimate joy-boy!


It's painfully clear that I'm behind on my blogging. Isaac is almost two now and there remains much left unsaid!! It would be nice to talk about our experience with the NAM and perhaps get through our first surgery before high school graduation. But first things first, a certain mother-0f-the-heart has given wise advice to write about the current day stuff as I try to catch up on the past.

Those who know Isaac understand how completely he lives up to his name. Isaac is a Hebrew name that means "he will laugh." That seems like an understatement! Isaac has contagious joy that delights those of us blessed enough to see him in his element. Speech teachers that withold much wanted toys and various nursery workers do not know the real Isaac. The real Isaac is full of smiles and looking for every opportunity to share his joy with the world.

At the moment we are almost two-years-old and our most important project is speech. It's nice to know we're done with surgery for now and will cross that road again somewhere around age 3 or 4. The first year was intense but now things are much calmer. Isaac has been in speech therapy for almost a year now and has several signs that help him communicate (more, eat, drink, all done, down, milk, etc). Once a week we have a speech therapist from Babies Can't Wait come to the house to play and stimulate speech. I'm thankful for the signs she has taught us. They help Isaac tell me what he needs and that cuts down on a lot of tantruming. And all of the mothers said, "Amen to that!"

M's are the easiest sound for children with clefts. I'm waiting for Isaac to say some p's and b's that requires air to push over the palate. I see Isaac starting to explore and do different things with his tongue and mouth and know that he's getting close to these things. Patience has been my friend when it comes to Isaac's speech. I've had a couple of moments where I wondered if something else was causing the delay. I don't believe there is. His speech will come it's just a slow process. I celebrate him for doing things that others might find ridiculous but knowing what's an accomplishment for your child is important. My first child was and still is overwhelmingly verbal and it has served me well to see the difference in their personalities and celebrate who they are instead of comparing the two and wanting Isaac to be the same as Emily.

Besides who needs to do all that verbal stuff when you can play basketball? Isaac fervently loves basketball. His priorities don't exactly place speech at the top of the list. There's more important things like climbing to do. He has watched me play with my younger brother since he was an infant and finds it quite insulting that I would offer him a size-appropriate ball. No, that simply will not do for him. He's made it crystal clear that he deserves a grown-up, official ball. None of this baby, wimp sized stuff for him. It's mom's ball or nothing. I am coaching Emily's basketball team and wear him on my back in a patapum pouch during practices. He couldn't be happier than out there in the middle of the basketball action.

Isaac, I will wait for you to talk as long as it takes and will continue doing everything we can to help you get there. I know you can and will do it.
Love,
Mom