A Little Blessing: 3rd Surgery: Palate repair

Sunday, July 19, 2009

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.

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Oral-facial clefts are birth defects in which the tissues of the mouth or lip do not form properly during fetal development. In the United States, clefts occur in 1 in 700 to 1,000 births, making it one of the most common major birth defects. Clefts occur more often in kids of Asian, Latino, or Native American descent.
The good news is that both cleft lip and cleft palate are treatable. Most kids born with these can have reconstructive surgery within the first 12-18 months of life to correct the defect and significantly improve facial appearance. http://kidshealth.org/

I remember going in for my 20 week ultrasound. I was so excited to find out if I was having a boy or a girl. My midwives told me that so far all of my labs and vital signs were picture perfect for a pregnancy. Then it happened...I saw the ultrasound tech's face turn serious. She kept taking more and more pictures of my son's face, but wasn't saying anything. With my medical background I knew the possibilities; I finally came out and asked..."What's wrong?","Is there a cleft?". The ultrasound techs aren't allowed to really say anything until it is confirmed by a doctor, but she did say she wasn't sure. Tears began to roll down my face, but I was trying to stay strong. My daughter was with me and I didn't want her to be scared. More and more pictures were taken. I was then asked to wait 4 weeks before I came back to get another ultrasound. This would allow my baby more time to grow and then confirm what they thought...my baby was going to have a cleft lip and palate. I was devastated, but there was nothing I could do. I searched online for any information and pictures I could find to satisfy my desire to learn more. I had no family history of this birth defect. I was referred to a high risk doctor for further evaluation...from there my world began to fall apart. The more and more they checked my baby inside my womb, other concerns began to develop. As it turned out, my little boy was not measuring "normally" and the doctor was worried about a form of skeletal dysplasia, specifically - achondroplasia. For those of you who don't know, this is the most common type of dwarfism. They sent me to a neonatologist to learn more about different types of skeletal dysplasia. Some skelatal dysplasias are lethal, but most have a good prognosis. This was the point when I opted for an amniocentesis to rule out a diagnosis of achondroplasia or chromosomal defect. I felt I needed to do this to prepare myself for what was to come. I had hit my ultimate low...what was wrong with my baby growing inside of me...would I finally have him and lose him all too soon...what did I do wrong...why is this happening to me? Many more weeks of anxiety and anticipation...and then the amnio results came in. Everything was normal!...(Sigh of relief). Still feeling nervous, not sure how my baby will look or what the severity of the cleft will be, but am definitely more hopeful at this point.