If you’ve been around for a while you’ll know that Wilder was born with a Cleft lip and Cleft palate. If you are just joining, then my last baby was born with a cleft lip and palate. Medical term is “unilateral right side cleft lip and palate.” But yes- he was born with a cleft lip. It was one of those things that you never imagined would happen to you, but that you can’t imagine not going through that process because it made you.. well you.
I did a blog post back when we were going through these troubles and was still pregnant with Wilder. At that moment in my life- I did not think I’d be okay. When I found out about his cleft in the ultrasound … I was so embarrassed. It was a really dark time of my life and honestly such a complete blur to this day. As we approach Wilder’s first birthday all these emotions have been surfacing from this last year and hitting me hard..
While my story may not be the same as yours, this is my story on having a cleft baby. I hope that someone out there is reading this who 1. has never been educated on a cleft baby and 2. just found out they are having a cleft baby and can relate to anything I said here. (If you just found out you are having a cleft baby and you need someone to talk to, cry to, grieve with.. please use the contact button and contact me.)
Pregnancy | I won’t go into a ton of detail on my pregnancy in this post because I have designated posts directed to my pregnancy BUT I will share that in my pregnancy I felt alone. I had my parents, I had Ty, I had a few friends that knew of Wilder but I still felt so alone. I felt shrunk and like I was hiding something 24/7. When people would ask “Are you excited?” I would lie and say yes.. but deep down inside I was scared. It never really fully hit me about him being a cleft baby until at 8 months pregnant… the time when I had to pick his surgeon. A happy time in my life when I should be worrying about what outfit he would wear home.. I was worrying about what surgeon was going to be operating on his face in a few months. It wasn’t easy. I was in a bad place I felt when I was pregnant because looking back… its all a blur.
Birth- I was nervous. I was so nervous. I did not think I could love Wilder the same as I loved Archer. Not to mention we still weren’t sure if he had Trisomy, or Down syndrome, anything could happen at this point. I couldn’t bare to research on clefts because I couldn’t handle knowing my baby would be born “abnormal” as those like to say. But.. once they laid that 8 lb 10 oz baby in my arms… I melted. I literally fell in love with his chubby cheeks, his pissed of look, his double chin.. I fell in love with his cleft. I have linked more on his birth above.
Bottle Feeding- I often get a lot of questions about feeding. When Wild was born he was on a strict 2 hour feeding schedule. He had to gain so much weight or else he would need a feeding tube. The pressure was on. Between post partum, having a 2 year old and a husband who worked more then he was home. I started to develop PPD. I would wake up pump for 30 mins, feed for 30, sleep for a hour and do it all over again. I was overly exhausted. I felt pressured to pump for my baby but I couldn’t do it. It got to the point where I wasn’t feeding Wilder because I couldn’t handle all the pumping. I ended up switching to formula and it helped me keep my sanity and get a few more hours of sleep. I cannot stand when people pressure breast feeding. I got pressured to breast feed even though WILDER COULD NOT SUCK. It was NEVER happening. I could try and try and try and we both would end up in tears, frustrated, mad, because it just wasn’t happening but yet, I still got pressured into breast feeding. Wild drinks from a special bottle with a nipple called a PIGEON NIPPLE. This pigeon nipple has a valve that allows him to bite down and it squirts milk out. Wilder cannot suck. Wilder can’t/couldn’t take a binky at all. The nipple fit on several different bottles and he still uses it to this day. There are a few other types of cleft bottles but we used the pigeon his whole life, it seemed to work best for us.
NAM- The NAM is a expensive little device that Wild had for 4 months. Its full name is called a nasoalveolar molding device. It was a piece of hard plastic that was molded to his mouth. It wasn’t cute and was one of the hardest parts of having a cleft baby. You had to tape his precious cheeks 24/7. He couldn’t get a full “soaking” real bath. We had to clean it 1x a day which resulted it removing it, repositioning it, putting it back. We had weekly 10 HR drives to his Ortho. He hit it on everything. Tummy time was a friggin joke. It was overall so hard to deal with that damn NAM everyday for 4 months. That’s 16- 10 hour drives. That’s 160 hours we spent on the road in those 4 months. That’s 14,000 miles we put on our vehicle. It was a lot of work. But it made the worlds difference. It brought his cleft together so much, which resulted in a smaller scar. After a month past he started to love it. The second it would come out, he would scream until it went back in. It was his security blanket.
Baby Food Feeding- Feeding actual baby purees was hard (before surgery) because it all came out his nose. But we kept with it and tried to get some down him. He wasn’t tiny but he was at the bottom of his chart for weight and was much smaller then Archer was. I always felt pressured to keep his weight up because of his complication and we tried to spoon feed but with the NAM it was so hard to get a spoon in and without the NAM it came straight out his nose since he didn’t have anything protecting the roof of his mouth.
Mean Comments | One of the biggest things I was worried about were people and their mean comments. I was so scared to post his birth online because of how ignorant people can be. I had a really good support system that instantly loved him and brought happiness to us. I did have a few instances where I was brought to tears by the comments people or children made to me out in public, and I always say to please educate your older kids on the way people look and to not stare… chances are they are tougher then you are. I think educating children on the differences in peoples and abnormalities that can occur at birth and in your life is a huge way to promote positively. It hurt my feelings having a 8 year old little girl yell that she didn’t want to look at my baby, so educating children is a must. Talk to them in private, show pictures, teach them about everything. Please.
Surgery- Wilder had his first surgery on August 17th 2017. We were in the hospital for 5 days because he struggled. With the first surgery they repaired his lip and did a “soft” soft palate repair and inserted a plastic prosthetic up in the roof of his mouth so it is solid and hard. Surgery was emotional for us. I cried the week of, after, even the next days I cried, because this wasn’t my baby. Because he looked nothing like himself. It was a rough transition to see my baby who’ve I’ve know for 5 months transform within 3 hours and be a totally different kid. That was one of the hardest things I think to understand is that he looked different. We consider us lucky because we got to fall in love with TWO SMILES, his cleft and his forever smile! Not many people can say that they get to fall in love with two smiles from one baby!!
After surgery- after surgery we had instructions to massage his lip and apply scar ointment 2x daily. Massaging was so hard on him and he screamed in pain. It was so hard to see your baby in pain. He started to eat much better and would tank on the food. It made me so happy to watch him eat and eat and eat. He has gained a ton of weight back on since his surgery and is finally “normal” on the charts! I am so proud of my lil man for inhaling the food! He LOVES food!!
Today- Today Wild is doing amazing. We just met with his surgeon and he is 5 months post surgery and doing fantastic. He really is a tough kid and has gone through so much in his length of life. He makes us laugh every single day, he is the cutest damn thing I have ever seen. I still miss his cleft all the time when I see flashbacks because it made him “him” but the knew look and his forever smile is just as adorable as before!
Teeth- cleft babies teeth are sooo funky but so cute! Since his cleft still affects the gumline and will until age 5- his teeth will be crooked and funky until he undergoes his bone graph. But they are so cute and they make him “him.” I love looking at his crooked smile and teeth, it makes my heart so happy.
Future- So in the future Wild will have 3+ surgeries. His next surgery is going to be summer of 2018. Then it will be between age 2-4 and the next one will be age 5-6. He may need future surgeries but those aren’t mandatory and depends on his healing.
Wilder has been a huge blessing in our family. Most people don’t even recognize his cleft when they meet him because his surgeon did SO good. His medical bills aren’t fun but thats the only thing that isn’t! He has taught me so many things in his small length of time and I love educating others on his cleft! It really is such a common thing in babies and nothing to be ashamed of. He is beyond perfect and I am lucky he is mine!