A Little Blessing

My name is Brandon Burditt. I was born with a bilaterral cleft lip and cleft palate. I had three surgeries in my first year of life; but that hasn't stopped me. Some say I am a little charmer; I love to cuddle, laugh, and play.
This is my journey...

Tuesday, July 28, 2009

I have received some amazing feedback since posting this blog on various cleft websites. A couple mothers who were inspired by my story have shared with me that they just found out at their 20 week ultrasound that their child will be born with a cleft as well. Both of these moms have had other children with no problems, so I can relate with how much of a shock this is to them. Having a child with special needs can affect the whole family, and it is important to prepare any siblings as well as yourself. Unfortunately we live in a cruel world sometimes. Preparing your children will be the start of a life long lesson for them. In this post I wanted to share how we prepared our older children for Brandon's birth, and how they reacted.
It wasn't until my husband and I had come to terms with the news ourselves that we were comfortable sharing the details with our other children. I think as a parent it was important for me to go through the process of shock, denial, anger, etc... followed by acceptance and peace before I shared the news with my kids. I did not want my initial emotions to transfer to them.

My step-son, Kyle, is currently 9 years old and my daughter, Breanna, is 6 years old. A few weeks prior to delivering Brandon, my husband and I explained to the kids that their little brother was going to be born with a "boo-boo". We wanted to put it in terms that they would understand. The first things they asked were "Where?" and "What happened?". We explained that his mouth and nose area would look "different" than other babies, but it would not hurt. We also explained to them that eventually the doctor's would fix his "boo-boo", but not until he got a little bigger and stronger. Afterwards we told them "sometimes things like this just happen", and then reassured them that it would all be okay.

My step-son Kyle doesn't spend as much time with Brandon as Breanna does since he does not live with us full time, but he has accepted Brandon just as he did his sister when she was born. They have a very cool relationship.

I remember my daughter's first glimpse at Brandon in the hospital right after he was born. Breanna had a smile on her face, but a slight hint of fear in her eyes; fear that she might "hurt" her brother, but never scared of what he looked like. She instantly bonded with him and even to this day looks out for him. The first time I took Brandon to her daycare to visit and meet the daycare workers Breanna was so excited that she was going to get to show her friends her baby brother. Kids are so innocent and amazing, and don't seem to be affected by certain things that adults might struggle with. Breanna was so proud to show off Brandon. Although some kids had some questions, they were all very kind.

Breanna was a little emotional after Brandon's first surgery. She spent the day with a friend at the zoo and was so worried about her little brother that she wanted to come home early. She picked out a special little elephant stuffed animal at the zoo to give him. The second she came home and saw him, she gently stroked her hand back and forth on his head saying, "Don't worry, sissy is here".

The kids have been amazing with Brandon. This whole experience has brought us all closer as a family. The kids just see Brandon as their little brother. The fact that he was born with a birth defect does not change the way they love him or interact with him.

Sunday, July 19, 2009

Medical update

Since his last surgery, we have had further testing done regarding Brandon's growth. As it turns out, he has a Growth Hormone Deficiency. We meet with his endocrinologist soon to discuss more of the details, but it is likely he will be starting growth hormone injections in the near future. This means we will have to give him nightly injections...sorry little guy. Some kids receive these shots up until the age of 18.

Life after surgery

Easter 2009. No more surgeries for a couple years...at least we think so.

Lovin' life, even when my mom makes me wear silly things.
I am now walking.

Getting ready to go on my first airplane ride. Since I had such a rough year, I get to go to Disney World.

What else can I play with in the hotel room?

My only picture with Disney characters before the rain came.

Little sport.

16 months old. This is me...as laid back as they come.

3rd Surgery: Palate repair

March 30th, 2009. Getting ready for surgery...again.

I was pretty entertaining.

The hospital let me play in their wagon to pass time.

Getting tired of waiting.

Mommy holding me after surgery. I was bleeding a lot. I didn't like when the nurses had to suction me.

Tube feeding post op. No bottles allowed again, only tube feeding for 10 days. The doctor said if it can't fit through the tube then I can't have it. I drank a lot of Pediasure. This was one way for mommy to break me from the bottle. After 10 days of this, mommy made me use sippy cups. (Nuby and Munchkin brand sippy cups with the clear silicone tops were the easiest for me to

use. I'm still not good at sucking)

Very disappointed that I had to have the arm splints on again for 10 days.

The doctor also required me to sleep on an incline or elevated in my car seat.

Waiting to get discharged from the hospital. We spent a day and a half here this time.

No matter how many surgeries I watch him go through, it never gets easier. I get better and better at packing for the hospital, finding ways to distract myself as I wait for the surgeon to come out and say "Everything went very well", and get used to sleeping in uncomfortable positions on the hard pull out sofas or upright in a rocking chair; but I hate watching my little guy go through this. As he gets older and more aware, it gets harder and harder.

My First Birthday!

I'm one years old today.

My birthday party...celebrating a special year with friends and family.
I accomplished a whole lot in one year.

My personal cake. Mommy convinced the surgeon to hold off on my next surgery until after my party so I could enjoy my cake.

Making a wish...

Misc. Pictures

Christmas 2008. A couple weeks after surgery. So glad to have the catheter out.

Had to go to U of M to get my eyes looked at. May have to have surgery on my eye muscles if they don't get stronger on their own.

Getting more mobile...

Valentines day 2009

2nd Surgery: Hypospadius repair and Ear tubes

December 2008. Getting ready to leave for the hospital. Got my bear from my daycare workers. They made it especially for me.

So tired...just want to get this over with.

Waking up and getting ready to go home. We are so blessed to have such wonderful surgeons caring for Brandon. The entire surgery took a total of 5-6 hours. Waiting is the hardest; and everytime they call you to the nurse's station to give you an update your heart jumps up in your throat because you never know if there is a problem. Luckily, that was not the case. This surgery was much easier than the lip repair. Brandon was discharged with a cathether which had to stay in for about one week. Diaper changing was the most difficult part, but here are some tricks of the trade - Double diaper. Keep one diaper on with a slit cut in the middle to feed the catheter through, then put a larger diaper over that to contain the urine. Some bladder spasms are common post surgery, but they give medication to help reduce those symptoms.

The scars are fading

Spoon feeding for the first time.

My first Halloween.
Healing more and more everyday.
Getting ready for Christmas.

A special thanks to Dr. Hunyadi for his wonderful surgical skills. Brandon's lip looks excellent!

Post Op

One day post op. Sis is so happy to see me.
Brandon's surgeon was amazing. I have never seen such tiny stitches. I cried so hard when I first saw him in the recovery room. His face was so swollen and I was scared he was going to be in a great deal of pain. He was given morphine for the pain, which helped, but morphine has a side effect of decreasing your respirations. His oxygen saturation level dropped so low we ended up having to take turns holding oxygen over his face all night.
Wearing his arm splints. This was a requirement as well for 10 days to prevent him from pulling at the surgical sight. We nicknamed him "Houdini" because he kept finding ways to get his arms out.

One month after surgery. Doing great. It's amazing how fast they heal.

1st Surgery: Lip Repair 7/11/2008

Each surgeon has their own requirements before they will perform surgery. In Brandon's case, he had to be at least 3 months old, 10 pounds, and have a good hemoglobin.
Brandon is four months old here...we had to wait until he gained enough weight.

Morning of Brandon's first surgery. He was doing very well playing before we left the house at 5:30AM, considering he was not allowed to have anything to eat or drink after midnight.

Just waiting for the doctors to get this show on the road.
Tube feeding after surgery. No bottles were allowed. We had to put his formula in a syringe and tube feed him for 10 days until he was healed.

Only spent one night in the hospital and then he was released to go home the following morning since he was feeding so well with the tube.

First Haircut

First haircut at two months of age. I had to beg my hairdresser,
Amanda, to cut his hair at such a young age.

Much better!