A Little Blessing: 2015

Wednesday, October 14, 2015

7 (and a 1/2) years later...

Sorry for the big gap in postings. Life has been very busy to say the least. All I can say is that it's a different kind of busy as your little one gets older. School and extracurricular activities seemed to replace the running around after the toddler, but I'm happy to report Bubba is doing well. We have had some medical battles this past year unfortunately, but we are hoping that after his surgery next month the urinary issues will be resolved. He has had some ongoing staph UTIs so he will be having reconstructive surgery in November. Bubba also had another set of ear tubes put in this year as his hearing had taken another nose dive when the prior T-tubes fell out. Conductive hearing loss impacted his learning and performance at school significantly so the tubes were a necessity. Recently he attended Cleft Clinic and we were told his next palate surgery/bone grafting will be approaching soon. We have x-rays scheduled soon to give us a more definitive time frame. I've gotta say I'm really nervous about this. It's interesting to note that the older my son gets the more inquisitive he is at these appointments. So not only do I get to absorb the information, but I get to answer questions such as "Why do I have to have surgery on my mouth again? It's fine." "Why are they going to take my bone out of my hip? If they do that I will die mom!!" It's never ending, but I assure you, as a parent you will find the right words to help them through this. At least I have so far, and by the grace of God I will continue to try my best.

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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.