Palate Repair: surgery # 2

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Isaac's second surgery came just 3 months after his first. He was 4 months old when his lip was repaired, now at 7 months, it was time to repair his palate. I had more confidence going into this surgery: I knew what to expect. I also had more reluctancy: I knew what to expect. Three months is not a lot of time in between procedures. I wasn't looking forward to going through things again, so quickly. As I wait for surgery # 4, I'm learning you never really feel ready.

Pre-op went smoothly, yet again. The "happy juice" they give about 30 minutes before surgery deserves mega-kuddos. (Maybe they'll give me some of that stuff next time?? JUST kidding, sort of.) I am so thankful that he was sleeping peacefully when it was time for him to leave for surgery. The nurse who wheeled him into surgery was grumpy and let me see how to say this, a bit hag-ish. I'm glad Isaac's "happy juice" was in full swing so he didn't have to deal with her. She was rough and cold. Needless to say, I wasn't a fan. I walked beside his bed as she wheeled him to the doors. Me, the one who doesn't cry in front of people--EVER, shed a few soft tears as I turned around. Oh no, my reputation is ruined--now what am I going to do? (Please tell me you can hear the sarcasm.)

I was not prepared for the agonizing after-care that the palate repair entailed. Looking back, I say with confidence that he was under medicated and had pain that wasn't properly managed. He was fussy and irritable in the hospital and at home for a solid week. It was frustrating and beyond nerve-racking. There was no amount of holding, rocking, or pacing that would soothe him. It felt like I was doing something wrong. I couldn't find a way to satisfy my baby. That made me irritable and on edge, like an angry grizzly bear woken up in the middle of hibernation. I took my frustration out on Wayne, and we fought horribly. Isaac's cries and constant unsettled state was hard, hard, hard. I foolishly thought that going home as soon as possible would help things settle down between Wayne and I and things would get better. It seemed like getting out of the hospital would alleviate some of the stress, but that wasn't the case. We came home and made it through a night of pure agony. At midnight, shortly after a dose of tylenol with codeine, Isaac was crying and in pain. It was another two hours before I could give him more meds. I know that I know, that I know God's power is real. It is the only way we made it through those two hours. It was a miracle that he calmed down and slept on my chest until I could give him another dose of medicine. I learned the hard way that staying another night at the hospital's not as bad as it seems.

The most important thing is not how hard it was, but that we made it through and Isaac's palate repair was successful.

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!!

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

Mother of My Heart

If you'd like to see a real life superhero I'll show you one. Sandra is my mother of the heart. We don't share any blood relation but don't say it too loudly-my heart doesn't know that.

Her life's experiences and wisdom give me much to learn from and much to be proud of. She's been knocked down by some of life's most potent blows but never knocked out. Breast cancer didn't have what it took. A child hood filled with who knows what didn't stop her. She's a fierce and tenacious advocate for children. Show her an underdog with odds stacked against them and she'll fight for them. Her loud and brave voice for sexually abused children founded an organization that has provided love, acceptance and healing for countless children through activity groups and a curriculum she created. Talk about a superhero.

Her compassion and love for what others overlook goes on like the energizer bunny. She's an awesome mom and a loyal friend. I consider myself extremely blessed to know her and be loved by her.

Isaac's first year was filled with hard, hard things. Two surgeries on your infant is not easy. She made them easier. It's amazing and a little alarming that she understands me so. (Honestly, is that a healthy thing?) She has a gift with words and they soothe the soul. Knowing you can be real with someone with absolutely no need to pretend something isn't hard is a priceless gift.

Thank you for your comfort, support, and for the way you believe in me. You are my wub-a-nub.

Amazing Mom

Mothers are wonderful gifts. I've been blessed with two of them. My bio mom, Brenda, loves me with a fervent love and is an out-of-this-world Nana! She has been through a lot and I'm proud of her.

Her road has not been an easy one. She was a single mom when I was born. She didn't have a Wayne (my too-good-to-be true husband) to hold her tightly and whisper reassuring words in her ear. Lots of things were stacked against her but she kept me, even though some said she shouldn't, and I'm oh so glad she did. My easy-to-see wonderfulness shows what an outstanding job she did raising me. (Apart from a weak focus on humility her parenting seems to be quite solid.)

Because of her lavish love and support I've been able to conqueor and succeed at anything I set my mind to. (In a rare state of shyness and humility I will refrain from listing the many things I find myself to be good at. Besides, who would have the strength to get through a list so long?)

Thanks, Mom. I love you.

Pacifier for babies with cleft palate

What is a wub-a-nub? Well, it's simply a pacifier with a stuffed animal attatched. They look adorable and they're wonderful for babies with cleft palates who don't have the suction to hold in a normal pacifier.

This "wubby", as we call him, has been my Isaac's most beloved pacifier since he was about 3-months-old. There's a reason he looks a little tired and worn--he is!!
Words fail me to describe just how much the wub-a-nub pacifiers have meant to Isaac and I. I believe every baby with a cleft should have one. They aren't made specifically for babies with clefts but they could be.

Amazon is only one of the many places you can find them on the web. There's many styles to choose from, too-ducks, frogs, dogs, and kitty cats name a few. Just do a search for Wub-A-Nub pacifiers and you'll find them. They're about $10 a piece. I know it sounds pricy for a pacifier but for us they were worth a million!

Spraying wubby with some shout and throwing it in the washing machine as soon as Isaac woke up from a nap is the best way I found to keep it clean. Wubby has been quite durable and up to the challenge! He even goes into the dryer.

Oh, wub-a-nub, what would I have done without you? You are my forever superheroe!

The Adventures of Feeding

Unfortunately there aren't any clearly defined rules for feeding babies with clefts. It's a lot of trial and error with no clear-cut right or wrong answers. The most important thing is to keep trying different things until you find something that your baby does well with. Trust that you and your baby make a great team and that you've got what it takes to give him or her what they need.

The Mead Johnson squeeze bottle from the hospital and a nuk nipple worked great for Isaac. Five days after Isaac was born we took him to the Craniofacial Center at the Children's Hospital to see the feeding specialist. They gave me a specialty nipple called the pidgeon (shown at the bottom of the page.)

What seemed like the greatest idea in the world was a continual source of frustration. He would feed well with it one time and then the next not get anything out of it. Thankfully I decided to ditch the "great idea" and went back to the Mead Johnson bottle and the nuk nipple. To help feeding go quicker I made the hole bigger in the nuk nipple.

I kept all of the supplies and nipples I aquired along the way and it turned out to my advantage. Later, after surgery number one, Isaac learned to use the pidgeon nipple and loved it. I loved it too--no more squeezing!!

I was eventually able to switch to a storebought nipple that resembled his pacifier. Because I was controlling the flow of his milk by squeezing I bought him a faster flowing nipple designed for older babies and didn't have to fuss with making the hole on this nipple bigger.

Here is the pidgeon nipple. It's great when it works properly because it allows the baby to control the flow of milk on their own so mom and dad don't have to squeeze all the time. Another benefit to this nipple is that it makes it easier for others to feed the baby making it possible for mom and dad to have a break.

After Isaac learned this nipple later (somethime after surgery #1) I realized why he had such difficulty with it as a newborn. A couple of the nipples I came home from the clinic with were defective. The vent hole wasn't cut properly and that was the reason for my frustration with them.

Stay flexible and do whatever works!!

Oh Happy Day! Isaac is Born!

At last he was here!! He was quite content to stay with mommy forever it seemed as I went almost a week over my due date. A nice dose of pitosin helped convince him that it was time to meet the world. It was so very wonderful to meet him and hold him. He was so very healthy and absolutely loveable. Exactly the way I knew he would be.

I loved him so! Holding him melted away lots of my concerns. I could see how marvelous he was and found that whether others could see his greatness or not didn't bother me as much I thought it would.

His breathing was irregular and that cut down on my initial time with him. I enjoyed him as long as I could safely keep him but knew it was better to let the nurses have him to make sure he was breathing properly. Even though Isaac wasn't able to nurse on the breast I held him skin to skin and put him there as if he could. It was good for both of us.

He was put in the NICU out of precautionary measures and because the normal nursery was overflowing. Being in the NICU meant he couldn't leave and be brought to my room. As a baby prisoner I had to go to him to visit. Or so they say. Rules were meant to be broken and some of his nurses brought him to me so I could hold him and practice feeding him. Shhh...it's our secret.

A few hours after he was born the NICU doctor informed us he wasn't eating from a bottle and needed to be tubed. She had a really harsh approach that was hard to swallow. I wasn't expecting this and was a little reluctant. Mainly because of her presentation. They placed a tiny tube in his nose (I mean tiny!) that went into his tummy and allowed him to get some milk. Hey, when your 8 lbs 10 ounces you've gotta eat! A baby's got to do what a baby's got to do.

Later that night it was time for Emily, the new and VERY proud big sister to go home with Nana for bedtime. We walked down to the NICU to pay this new baby brother a visit. While we were there I decided to hold him skin to skin again and nurse him. He amazingly tried to latch on and suckle. He wasn't getting any milk from me but he was making a huge step to being able to ditch that tube thing out of his nose. After "nursing" him he began to take a bottle.

I have to prefice this nursing thing. I held him skin to skin but after he started feeding from a bottle I didn't try to nurse him. He didn't have a palate and nursing for him would have only burned precious calories and left him tired, frustrated, and still hungry. I didn't want him spinning his wheels at something that would never work for him.

There are babies with a cleft lip and intact palate that can nurse with little difficuly. However, my Isaac had a significant cleft in the palate that made nursing for him impossible. I even know of mom's that pump until after the second surgery (at 6-9 months) and are able to teach them to nurse after the palate is fixed. I did not have the stamina to deal with the hassle of pumping for that long and choose not to beat myself up over it. I did the best I could and that's that. (Don't get me wrong it does make me sad at times to think that the cleft stole the joy of nursing from the both of us.)

I was able to get an electric breast pump to give him as much breast milk as possible. The pumping thing turns out to be an extremely tiring endeavor!! It was taxing and time consuming to say the least but the benefits of that breast milk helped me keep going for him. After three 1/2 months of pumping I closed the dairy farm. If you're not able to do this please don't feel regret! I had nursed my first child for 16 months and had the heartfelt desire to give Isaac as much of this benefit as I possibly could. When I couldn't go on with it anymore I laid it down-proud of my accomplishment. I was finally ready to accept my defeat and admit I made a losy cow that was not meant to me milked.

I began to bank the breastmilk for the coming surgeries. I knew it had lots of antibodies and healing properties. I wanted him to have it as many days before surgery as possible (5 days if you can bank enough) and after. I regret the stuff I tried to give him after the surgeries. They don't eat well after the surgeries and the liquid gold I had put so much time in harvesting at the dairy farm wound up going to waste. My lesson here is that it's better used before the surgery when you know they will eat it and get the benefit from it.

Wayne-My Fortress

A more loving and supportive husband than Wayne simply doesn't exist. Nobody loves me quite like he does. Second only to Jesus Himself, he is God's most gracious gift to me. I'll never forget his tenderness and patience for me while I carried Isaac. I cried many tears lying in the comfort of his embrace. He was always there-comforting, holding, and whispering words of strength and encouragment.

It bothered me that Isaac's cleft came from me. I felt responsible for passing it down to him. After all, my genes and heredity were the source. I remember Wayne telling me over and over how it wasn't my fault and that I hadn't picked or chosen this for him. Even though I knew it wasn't my fault I needed to hear his words. His words helped so much to combat those overwhelming feelings that tried to tell me otherwise.

I know that Wayne had his own fears and concerns for the baby. He wasn't as familiar with the medical stuff as I was. I shared stories from the internet with him and talked to him often about the things I knew and understood about cleft lips and palates. With my insider's view I tried to give Wayne a better picture of what to expect. The help I was to him doesn't hold a candle to the strength he gave to me.

The Early Days-Getting the News

Where should I begin?

I was born with a bilateral cleft lip and palate, so I knew the potential was there for that to be passed on to my kids. It was the last thing I ever wanted to happen to them!! My first born, Emily, was born without being affected. That's not the case for my Isaac. I had a peace in my heart with Emily that she was fine and even declined my ob doctor's offer to send me to a perinatal specialist. With Isaac I had a nagging inside my heart. Following that restless feeling lead me to request an appointment with the specialist in Atlanta.

Sure enough, my heart was right. The look on the doctor's face during the ultra sound confirmed that there was a cleft before he ever said it with words. My husband, Wayne, the rock, held my hand tightly through it all. Small tears fell from my eyes as I realized for sure all that he would have to go through. It's a long and painful road. A journey I had traveled and hoped my children wouldn't have to.

Researching information on the web and looking at pictures posted by other moms began to give me an idea of what to expect and that knowledge brought peace and comfort. I'm thankful to have known ahead of time. It gave me time to prepare, so I'd better know what to expect. My heart goes out to moms like mine, who didn't know about this tremendous blow from life called a cleft lip and palate ahead of time. At least with an expected blow you can brace yourself and minimize some of the impact. I knew exactly what it was and that it was coming and I still had about 3 million questions. What about mom's who have never even heard of it?? At least I knew how fixable and overcomable it is. Even if it does really stink!!

I can still remember some of the questions and concerns that ran through my mind. How will I feel taking him to places like church and the grocery store? How would I protect him from stares? How would I handle people's comments or questions? How could I make sure that Isaac's birth was celebrated and that he was valued by everyone who saw him as the treasure he is? So many unknowns. Other people's reactions were not in my control. I knew that I loved and accepted Isaac unconditionally, but I was uneasy about how others would react to him. And then how would I react to anyone who was rude or nosy or unkind?