Nephi

I'm going to jump ahead a little bit in time to tell Nephi's story. I was recently asked to type up our experience. About what we've been through, what we are going through, and what we will go through in the future. It is VERY long, but I am going to post it for journal reasons. 

 

This was me in Kentucky about 20 weeks pregnant.

This was July 5, when we found out we were having a boy!

30 weeks

I believe this picture was taken on my due date, December 7

 

This was the day I went into labor. December 21st. 2 weeks over-due.

 

 

 Nephi was born on December 22nd

 

 Our first family photos with Nephi

 First day taping

 First time with the NAM

 Surgery Day!! April 30, 2015

 After surgery. They did an amazing job!

 

Just over 12 years ago, my husband, Randy and I were married. Since then, we have been blessed with 7 beautiful children; 6 girls, and 1 boy! It has been such a whirlwind of adventures. We both always wanted a large family, and are thankful every day that we have been able to! In 2014, when we found out we were expecting baby #7, we were so excited! Up to this point, we had our 6 daughters- Emma-age 10, Natalie-age 9, Naomi-age 8, Briallen-age 6, Rebekah-age 4, and Alison-age 2.

Randy decided to take a summer job in Kentucky, so the kids and I joined him. Over the Independence Day weekend we had our first ultrasound scheduled. We never knew that day would be such a life changing experience. I’ll never forget it! I wanted the gender to be a surprise, but was outvoted by Randy and the kids. As soon as the ultrasound tech put the doppler on my tummy, we saw that is was a boy! She tried to hide it, but Randy and I both saw it, and couldn’t believe it. We were in a little bit of a shock. Towards the end of the ultrasound, the tech got really serious, and told us that she needed to talk to us alone. She then told us that she would advise us to get a medical ultrasound, and that our baby would have a cleft lip. We had no idea what to expect with that. We didn’t know what to think, but we did know that everything would be okay. We left, and I first felt shock, then guilt, then the tears came. What did I do to my baby? What could I have done to prevent this? Why wasn’t I healthier? Randy and I went into our bedroom, and he held me while I sobbed. Then we prayed, and I sobbed some more. Then I realized that this is not my fault, and I knew that we loved our baby boy unconditionally, and I would do whatever I could to help him. We called my midwife, and she put me on a very healthy diet (it’s amazing how easy it is to be healthy when it’s for your baby!). Through priesthood blessings, and many many prayers from family, friends, and community, we were comforted. We knew that everything was going to be okay, no matter what was going to happen.

We decided to deliver at home (I had 5 of my 6 girls at home, and we felt very good about our decision). I was 15 days over-due, and just about to give in and go to the hospital, when I went into labor. 24 hours of exhausting labor. Finally, on December 22, 2014, baby Nephi was born! 10 pounds, 2 ounces, 22 inches long!! We knew he would have a cleft lip, but he surprised us with a cleft palate as well. We weren’t prepared for that, and didn’t know how to feed him, or care for him, so we were transported by ambulance to the nicu. They took good care of us, and provided us with special bottles needed to feed him, and taught us how to use them. They said he was healthy, and sent us home the next day. Feeding was so different, and a lot harder! I had nursed all of my other babies, and not being able to this time was such an emotional struggle for me. I pumped every 2-3 hours, and only Randy or I was able to feed him his bottle. We had to prop him up a special way, and watch him closely to avoid choking. He would drink for about 30 seconds, and then cry from bubbles, so we would have to burp him several times every feeding. It was very time consuming, and very challenging to do all of this, and take care of 6 other children. Sleep is no longer part of my routine at this point.

At 4 weeks old, we were finally able to meet with his surgical team at Primary Children’s Hospital. While we were up there, they decided to fit him for a device called a NAM. It’s basically like a retainer that helps bring his cleft closer together, and not so wide, so when it comes time for surgery, it will be easier, and have less scarring. At this point, we had to put this large thing in his mouth, tape his cheeks and lips squished together with medical tape, and secure it all with those tiny rubber bands they use for braces. They also put stents in his nose to help form his nostrils to a more normal shape. Nephi had to learn how to eat all over again with all these new things, and he cried for at least a week straight. It was awful! We had finally found a different bottle that he preferred better. He has to have a special valve in the nipple of his bottle that helps squirt the milk in his mouth without having suction, because he cannot create suction in his mouth at all. We had to do the taping with the NAM for 90 long days. I wasn’t sure we could do it, but we did! On April 30 was his first surgery. This surgery was to sew the gap in his lip together, fix his nose to make his nostrils look more normal, put a prosthesis on his palate to cover most of the hole inside, and put tubes in his ears. It was a very hard, stressful thing to go through (though Primary Children’s is amazing!!), and Nephi, once again, had to learn how to eat all over again. He was such a trooper, and is such a strong boy! Recovery wasn’t easy for him, but we made it through!

The challenges we face right now, are feeding issues still. He cannot create suction because there is still a small hole in his palate. Feeding him baby food has been a trial and error period of trying to figure out how to feed him without the food coming right out of his nose. We have it mostly figured out, but it’s still not an easy task for any of us. His immune system is weaker than our other children were, so he catches things a lot more often. He doesn’t sleep well at night, so sleep is still a luxury for me at this point.

 Nephi’s next surgery will be around when he’s 14 months old. He will have his soft palate stitched to help with speech, a different prosthesis put in, likely a new set of tubes, and possibly a slight fix in his lip and nose. Then when he is 3-4 years old, he will have his hard palate surgery, and possibly more fixes. Around 7 years old, he will have a bone graft to his gum line. They will take bone marrow from his hip, and put it in his gums to help his teeth to know where to come in. Around 17, he will probably need work on his nose again. He will have to have speech therapy at a young age, and braces also. He will probably have tubes in his ears for a very long time, which need to be replaced a couple times a year (this is a surgical procedure).

People think that having a cleft lip/palate is an easy challenge to have, because it’s an "easy fix". We are so blessed that there are talented surgeons out there that can work miracles, and help these children live a more normal life, but it is not easy. It is a challenge, a stress, and will be for several years.

This has all been just a part of life, and we don’t really think much about how hard it is, or has been until someone asks us. It has been a very challenging journey, but we love Nephi so much, and wouldn’t trade this experience for anything! It has brought our family closer together, and made us stronger people. He has such a great disposition; such a great spirit about him that just lights up the room. He is so happy, and brings a smile, and often a tear, to everyone in the room. We are so blessed to have him in our lives!!