The Ort Family: January 2009

Note: I'm reposting this from our old family website that was part of the "Circle of Smiles" webring for www.cleftadvocate.org . Soon, I will get this blog linked into the "Circle of Smiles."

Jarom's Story

Everyone knows, in the back of their minds, that there is a possibility that the birth of their child will have some complications, but we rarely speak of these things. I thought that my husband and I were well read on the “what to expect” until delivery day arrived. Then I quickly realized that we knew nothing about what to expect and we were so unprepared for most of what happened. The labor and delivery were nothing like I planned. Finally, however, our beautiful baby boy was born—Jarom Michael Ort—weighing just under seven pounds. I held my breath, waiting to be happy until we heard him cry. Then I heard the doctor say, “Baby has a cleft lip.” In my mind was one huge “?????” The only thought I dared allow myself was, “It doesn’t matter.” I got one little glimpse of my baby—dark hair, dark eyes, healthy cry, and a gap in his upper lip—before he was whisked away to be cleaned up and examined. As my doctor sewed me back up, I lay there on the table trying to figure out what this meant. I don’t remember if anyone explained to us then what it was or told us about his palate or anything. I can remember searching my memory for any information on “cleft lip”. I really had no idea what it meant but I kept telling myself over and over, “It doesn’t matter. He’s my baby and I will love him and he will be beautiful no matter what. It doesn’t matter.” In retrospect, I think I was afraid to let myself feel anything in regards to Jarom’s cleft.. I was afraid of betraying my baby if I allowed myself to feel anything negative.

The Original Jarom

When I finally got to hold Jarom, an agonizing hour and 20 minutes after his birth, I didn’t spend any time counting fingers or toes. I just held him and examined his funny little face. It took a few looks to become accustomed to his appearance. The gap in his lip was about half of an inch wide on the left side. His right nostril and the right side of his lip were normal. On the left side it just looked like his mouth was open into his nose. Since Jarom’s palate was also cleft, the gap was also on the inside of his mouth. When he cried really hard, you could see that about half of it was missing. When our pediatrician, Dr. Deborah Weems, stopped by the hospital, she was quick to point out that all the tissue Jarom needed was there, it just needed to be “smooshed” together. Dr. Weems was a relatively new doctor, but she had spent time during her residency with Dr. Constance Barone (who would be our plastic surgeon) so she was familiar with clefts and was very matter of fact, calm and positive.

Initially, Jarom had a hard time eating because his cleft was so wide and we did not realize how many different bottles there were for cleft-affected babies. At 6 days old, he was admitted to the University Hospital in Columbia Missouri because he lost too much weight, was dehydrated and jaundiced and we needed help getting him to eat! We were so thrilled when he drank 1/2 ounce in 30 minutes! What he needed was 2-3 ounces every 2-3 hours and he just couldn't get it. So after almost a week, he came home with a nasal gastric feeding tube that went in the right nostril and down his throat into his tummy. This helped him to get all the milk he needed without burning all the calories in the process. He had 20 minutes to drink what he could from the bottle ( a modified playtex nurser), and what was left went down the tube.

Jarom the 2nd

Thankfully, Jarom only had the ng tube for about 2 weeks. At 19 days old, Jarom had his first surgery--lip adhesion. The lip adhesion pulled the sides of his lip together. This did not give his lip a normal appearance but made his lip more functional. He was then able to eat from the modified playtex nurser alone. We had to squeeze the bottle to help him (no suction without a full palate!), but no more feeding tube! At 3 months of age, Jarom had his next surgery—a hernia repair and ear tubes. He was supposed to have had his lip repaired at the same time but his hemoglobin was low and the doctor did not want him to lose that much blood until his hemoglobin went up. And so, Jarom was almost 4 months old when his lip was repaired just in time for Christmas. His lip was repaired December 19 and stitches were removed December 24. Jarom’s palate was repaired a few months later when he was 9 months old. That was the hardest of all the surgeries up to that point. The surgery took longer and the recovery was much harder. It seemed like he did not drink or sleep for 6 weeks!

Jarom, 4 months old, after lip repair

Excluding ear tubes, Jarom’s next surgery was when he was 5 years old. By this time, we had moved to Kansas City and were seeing the team at Children's Mercy Hospital headed by Dr. Virender Singhal. Jarom was scheduled for a palatal lengthening, septoplasty, turbinectomy, and lip and nose revision with ear cartilage graft. All of this was to improve speech and total function of the mouth and to give Jarom a better airway. This was a difficult surgery because it seemed like Dr. Singhal would taking apart everything that had been done and re-doing it! The surgery was long, recovery was slow and before we got home, we had learned so much about the strength of a 5 year old! This was our first surgery where Jarom was old enough to know what was going on and it was quite a change. We prepared him for a lot but forgot to prepare him for the fact that he would look different afterwards. After the initial shock, Jarom adjusted and finally announced a few weeks later the he thought his nose looked great!

The Actual Jarom, taken September 2008

Jarom is now 12 years old. His bone graft surgery was nearly three years ago and went very smoothly. He is in sixth grade and he is as normal as any other obnoxious 12 year old boy! He is both smart and funny. He excels at school and band and is a whiz on the computer. AND he bickers with his sisters, talks too much at school, tries my patience and challenges my ability to answer questions! So far, he has had eight surgeries and is wearing braces. Truly, the cleft is a very small part of our lives right now. Jarom is smart and happy and busy getting into normal boy trouble.

For parents who are just starting out, I would encourage you to enjoy your baby. Get the information you need, particularly on feeding, but try not to overwhelm yourself with too much information. It's best to digest the new information a little bit at a time. What you need to know at the beginning is how to feed your baby, what team will care for your baby and when the first surgery will be. Get through that before you worry about what will happen when your child is 4 or 6 or 16. I would also encourage parents to take lots of pictures before the first surgery. This is the first face of your baby that you will fall in love with. You may find after lip repair that you miss your baby's first smile. It's okay if you feel that way and it's okay if you don't --but you will want pictures either way. Also, don't avoid going in public with your baby before lip repair, just try to prepare a light response that you can give when people ask questions.

One thing that I wish I would have done differently is that I wish I would have allowed myself to feel my genuine emotions (even if they were negative at first) when Jarom was born. I was afraid to let myself think or feel anything except "everything will be just fine". I spent my energy denying my own feelings and reassuring everyone else. There is nothing wrong with having a reaction to the unexpected news that your baby's face is different and that feeding and speech will be difficult and he is going to need surgery to put everything back together! There is nothing wrong with feeling a little overwhelmed at what lies ahead. Really, as Jarom got older and I let myself relax a bit, having a good cry as surgery approaches is a good way to let off steam and, even, to prepare mentally for what lies ahead. I'd so much rather be emotional the week before surgery than to fall apart on the day of!

Our biggest joys have really been the normal joys of parenting any child---his first step, his first word, this first time he asks a question that we don't know how to answer! We have had the additional joy of making it through the first year and thinking, "thank goodness we don't have to do that again for a while!" and the joy of seeing our son grow to the point where the cleft lip and palate he was born with are NOT the biggest issues in his life. Our biggest challenges have, at times, been related to Jarom's cleft. Getting through any surgery, no matter how routine it is to the doctor performing surgery, is ALWAYS a challenge. It is emotional and exhausting in ways I could never have imagined. Feeding Jarom was a big challenge when he was young, both before and after surgery. Actually, feeding was still a challenge after his last surgery (at age 9!). We had to find creative ways to keep Jarom eating (which was really drinking since he had to be on a liquid diet for a couple of weeks) so he would get enough calories after surgery even when he had very little appetite for anything that wasn't a cheeseburger!

So that's the end of our story for now, though we are still in the middle somewhere. It seems silly sometimes to have this all written out, but reading personal experiences of other families really offered me comfort when Jarom was young, so I have hope that this may offer comfort to another.

September 2006: On an innocent visit to Grandma and Grandpa's farm in Grant City, a little (very little) pig named Chelsea became an important part of our extended family. Grandma and Grandpa took the kids to another farm to visit and see the baby pigs. Grandma noticed that a little runt was slightly hurt and getting stepped on and soon this little pig was on it's way home with Grandma and Grandpa.

The first weekend we spent with Chelsea, all the kids enjoyed holding her as much as possible. At that point, she was too little and too weak to resist their affection.

Chelsea spent the following week with us in Kansas City because Grandma had to work and would not be home all day to feed Chelsea. The kids loved having a pet . . . especially one that was so opinionated. Each day that Chelsea grew stronger, she also grew *louder* and she really let us know when she didn't like what we were doing!

Now Chelsea is happily living in a little pen in Grandma and Grandpa's yard. She gets to run around outside the pen quite a lot as well and the kids love to chase her. At first I thought she was scared and running from them but it seems now like she *enjoys* running from them. When the kids head inside, she gets bored and lays down in her pen.