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?