Kaison

Kaison, is our first born, he has taught Max and I more than we have taught him in his lifetime. He taught us patience and how love goes deeper than what is on the outside. He even tested my faith numerous of times. When I was 4 months pregnant with Kaison I went for my usual checkup and got to see my little guy on the ultrasound. It was a bittersweet moment. I found out we were having a boy I was so excited to tell his dad. Then I found out he has a Bilateral Cleft Lip. My heart dropped. They were unable to say if he would have a Cleft Palate, so we had to wait till his birth. On the day of my ultrasound I felt as if I was hit by a ton of bricks. My fear had become a reality. I will have to see my child go through everything that I had gone through. I now can relate to my mom on so many levels. We also seen that Kaison had a right Clubbed Foot. After the ultrasound, I headed to the doctor’s office to go over the details and met with a grievance counselor. It was not one of my fondest memories I had with my OBGYN. She had advised that I have an abortion. Since it had been known that Kaison will have 2 birth defect she was worried about the unknown. She said that with the multiple birth defects it can lead to other serious problems. That was the first I ever heard you could have an abortion. I never knew people can pick and choose if they want their baby with their birth defect. In my family “abortions” were never talked of. With my mom by my side we both disagreed. We said we will just take what we were given. Even though I denied having the abortion I was a complete mess. At the time of my pregnancy I was just turned 19 years old…. still a baby practically. Fresh out of high school. Everything seemed to be just a bit too much for a young girl who knows nothing about life and never seen the world quite yet. On September 29, 2008, Max and I welcomed our baby boy. That day changed our life more than we expected. Kaison was born at just 36 weeks. I had Preeclampsia which caused my placenta to age. He was just the tiniest little thing. He weighed 5 pounds and 1 ounce. We were so scared to hold him. But the look on my Max’s face I can never forget. He was so happy to see his son regardless of how he looked. Reminded me of the reason why I chose him. I fell in love with him all over again. Within the first months we met with so many doctors. We met with his Pediatrician, Orthopedics, Oral Surgeon, Orthodontist, and his Gastrologist. You could imagine the frequent doctor appointments and the feeling of overwhelmed. They were all such wonderful people. When Kaison was just shy of 2 months old. His Orthopedics decided to start him on a casting to prep his Clubbed foot for surgery. Our little guy had a tiny cast running up just above his knee.  One morning we were woken up by his cry. He had never cried like that before. We were thinking it was his cast but his foot seemed to have good circulation. We tried everything we could to comfort him. Then we realized he had a bulging on the right side of his pelvic area. The doctors confirmed he had an Inguinal Hernia. The doctors told us that we needed to wait to have it repaired since he was still too young and a preemie baby to add to the mix. In the meantime, they shown us to apply pressure to the bulge every time it popped out and it would go right back in. Within a few weeks Kaison was 2 months old. Still with the hernia and ready for his Clubbed foot repair. The night before his operation was a sleepless night for Max and I. I am pretty sure most of you moms and dads can relate. The anxiety of the operation along with the deadline of oral intake they can have before their operation. We were up all night trying to get him to drink as much as he could before his cut off time. Of course, he did not want to cooperate. Out of all nights he decided he wanted to sleep. I was so worried that he will be crying of starvation. Surgery day came and Kaison was nothing but calm before going in with the doctors. It took about an hour and a half till we got to see him again. After being reunited we stayed in the recovery room for another 1-2 hours for observation before sending us home. He seemed to be fine and we went on our way. We got home about 20 minutes later. As I sat Kaison’s car seat on the bed he made this odd sound. I went to take him out of his car seat and seen he was a little blue. I called his name and just a little movement was made. I cried for Max. Thank goodness for his quick thinking he grabbed our son and then started to perform CPR. It was one of our worst days ever. I called 911 and we were back at OHSU Doernbecher Children’s Hospital. We were told that Kaison had reacted differently to the pain medication because he was a preemie. The medication relaxed him so much, he forgot to breathe. They admitted us so they could run more tests. We stayed in the NICU for the night and was placed in a room where he did not need much observation. The next day the doctors gave us the results of his tests. Turned out Kaison had been aspirating. For those who don’t know Aspirating is when his milk goes into his lung instead. Which can lead to Pneumonia.  Explains why he was so sleepy the night before his clubbed foot repair. He had been working a lot harder to drink from his bottle due to the cleft palate. The doctors insisted that it would be best for Kaison to have a feeding tube. It was all new to my family and me. My mom never had feeding problems when she was a baby and neither did I. First time for everything, and it was more knowledge for us. During our stay, the doctors scheduled Kaison to have a G-tube placed and to have his Inguinal Hernia repaired at the same time. The surgery went well just like the first time. Until afterwards we had another scare. It’s a good thing we were still at the hospital and they had the oxygen ready for him. It was the pain medication again. He got a little too relaxed. We stayed in the hospital awhile more just as a precaution. We practically lived there. It was our home for the time being, we ate, slept and showered there. Thank goodness, they had a washer and dryer room for families. We just kept rewashing whatever clothes we had with us, We never wanted to leave his side. So, Max would go to work and come back “home” to us. There was no need for him to go back to our actual home till we got released. We spent our first Thanksgiving as a family in the hospital. The staff was so wonderful to us they always made sure we were comfortable. Kaison was showing great improvement and before we knew it, it was time for us to go home. So much fear, and so much what if’s, but we managed. It was just Max and me. We had my mom there for help but she was sick herself. We did not want to put too much stress on her. We later felt that we needed more help so we decided to move back home to Hawaii where we have more of our family.  We were sad to leave Oregon. We loved Kaison’s doctors, but we did need more hands. Hawaii welcomed us with new beginnings. Medically everything was different. We live on the Big Island of Hawaii and if you are not aware of it a lot of doctors reside on the island of Oahu. To be seen you’d have to fly over which is quite a hassle especially if you have a baby. The flight is about a 45 minute, not including the whole check in, security, boarding and to de-plane. Even with that challenge we decided this was the right decision for us as a family. Not only did I need support from my family but my Max needed support from his family as well. Unlike myself and my family we were familiar with cleft but my husband wasn’t. Plus, my dad was a Physical Therapist and my step-mom was a nurse. We had a little bit more under our belt. Kaison was welcomed by Kapiʻolani Medical Center for Women and Children’s Cleft and Craniofacial Center with open arms. We also joined with Easter Seals. They have a team of Speech therapists, occupational therapists, and so much more. We basically had a team of all that we needed. The plus side Easter Seals is on the Big Island and they do home visits! We were also provided with a Public Health Nurse who did home visits as well. Who doesn’t love home visits?! It makes things so much easier when you got a baby. I am pretty sure you all can agree. If you got the resources take advantage of it. Being at home made things so much easier, and having a lot of hands made a big difference. After all it does take a villiage to raise a child. With all the help of everyone Kaison eventually no longer needed the G-tube. Well actually it got pulled out accidentally and boy did that hole close quick! We rushed him to the Emergency Room but was told it was too late and the G-tube could not be place back in unless with surgery. Luckily Kaison had already improved his eating habits and he was eating by mouth most of the time. He is now 8 years old and a big brother to two of his little brothers. He has shown us so much strength. He taught us to be humble, and that anything is possible. He never ceases to amaze us how much he has overcome and he continues to overcome whatever comes his way.