Finding Out About Our Jayden’s Cleft Lip

As you can imagine, this was one of the hardest days of our life. It started out so happy though! We were SO excited about another ultrasound and that we would get to see our little man again! He was in a mood this day-kicking, punching, and moving all over the place, making the ultrasound last much longer than usual (and making me really wish I had skipped breakfast beforehand), but we loved seeing him and it was fun to see what a strong personality he had. Ben could not help but comment on how our Jayden had obviously inherited my stubborn spunkiness!  To this day, that is all too true.
 

As we went through the ultrasound, practically ever checkpoint was checking out great, then came that long dreaded pause from the ultrasound technician that all parent’s dread. Her smile and the twinkle in her eyes died and my.heart.sank. She informed us she believed he had cleft lip, but could not be sure because he kept moving around and covering his little face with his arms and hands throughout the entire process. Finally, after everything else had checked out, he moved them and gave the technician a still, clear shot of his sweet, little face, revealing his cleft lip so the technician could confirm it. Ben and I both feel that Jayden covered his face until the very end so I could know everything else was okay first, since cleft lip can be linked to other issues and it is one of the first things they check for. It was almost as if he knew his Mommy would lose it if she found out he had cleft, and then had to continue looking for more issues related to the cleft, so instead he made sure I knew everything else was okay before letting the ultrasound technician break the news to me. This little one knew his Mommy well, even then. It definitely helped to know that we were dealing with an isolated cleft, and that no other issues seemed to be present or linked to it, but I was still an instant mess with worry. Questions flooded my mind almost as quickly as the tears flooded my eyes. Could we afford the surgeries for our son? Would he also have a cleft palate? (they could not tell for sure with the ultrasounds and we were told we would not know until after he was born) Would he be teased? How much would this affect his life? And probably the biggest question (as horrible as it made us feel to even wonder about it), was would it affect how Ben and I saw our little boy?

There were SO many emotions flooding through me and I really struggled to keep my composure.

All I wanted to do was go home and have Ben hold me, but I still had to see my doctor first, since we had done the ultrasound first this time and Ben had to hurry back to work. We walked up the stairs to his office completely overwhelmed, as if it was a weird dream that could not possibly be real. When we made it back to the room, my doctor also confirmed it, and I just lost it as tears began to stream down my cheeks and I started shaking. All I can say is I have never felt love and concern and worry for another human being so intensely in my entire life! It was about this time, that they decided to check my blood pressure. Seriously? You may not be surprised to hear that it was very high, even after trying multiple times and the nurses trying their best to get me to calm down. Let’s just say the more I tried to calm down, the worse it got, so they finally gave up. I told them if I was not dead at this point in time that I was probably fine, because I have never felt so stressed in all my life. I managed to calm down a bit as my doctor gave me information about specialists and surgeons and what needed to be done for my son, and assured me that everything would be okay. I knew I needed to focus and pull it together for Jayden. He would need me to be strong through this, but how could this be happening? My doctor told be to be grateful that it was not a worse problem. I can tell you I truly was, but at the same time, I would much rather be grateful that there were no issues at all. I was not looking forward to watching my sweet baby go through surgery and deal with life being different, especially with how cruel the world can be, but I had to be strong for him, and this was happening no matter how much I did not want it to. That much, I knew.

 

When we finally made it out to the car, I absolutely bawled…wailed is actually more like it. Ben tried to be there for me and hold me, but one of my shortcomings is how much I push away from others when I am hurting. It is somewhat of a defense mechanism that annoyingly does not have a shut off button. Even though I pushed away, it felt good to have him there trying to comfort me. I was not looking forward to dropping him off at work, just to go home and be completely alone, with only these overwhelming and terrifying thoughts to keep me company. It was a hard day. The stress made the nausea and my other symptoms so much worse and I really felt like I was falling apart to the point where I could not come together again. I called my mom (because that is what you do when you are having a bad day, and want to feel better, you know?), she told me how sorry she was and how her and my Dad always wonder when my life will stop being so hard all the time. It seems to be one big thing after another, my friends, and sometimes it gets really hard to deal with, although I am so grateful for the many blessings and good things we do have. I told her it was okay, and that the issues could have been worse and those who could not have children would kill for even a child with special needs like Jayden. Despite my best efforts to look for the best in the hard situation, every time I walked into the nursery I had spent 5 months setting up, I lost it. It went from my happy place to relax in and dream about my child being here, to being a very, very emotional one. I was completely depressed and sick for a couple days, and I prayed and prayed and prayed for guidance, comfort and help to deal with what was ahead of my little family. Ben was SO incredibly strong for me throughout those days and for that, I am so incredibly grateful!

 

Day three after finding out rolled around and I woke up feeling a huge sense of peace and comfort with all that was going on. It was completely amazing and still brings me to tears to think about it. Jayden was gently kicking that morning, and to me it was almost him saying, “It is okay, Mommy. I am okay and everything will be okay.” The spirit flooded our home that day and I really felt that everything was going to be okay and was actually able to comfort some other family members that were still struggling with accepting and dealing with it. It was so incredible having that dark weight lifted and having it replaced with happiness and acceptance and that excitement for my baby once again. I.felt.free.

 

Although the trial in general got easier to deal with, I still had my rough days. It got a bit hard again when we met with specialists and oru pregnancy experience went from me feeling like an exciting and special one to feeling a lot like lab rats. The specialists did not seem to care about whether or not they were saying my name right, and it was all logic and questions and blood samples with absolutely no emotion backing. I hated it. At times I wanted to slap those specialists and inform them that I was not just some science experiment, but a women embarking on a very exciting and emotional journey. I didn’t. I remained calm and collected and told myself I was doing it for Jayden, but boy was it hard! We did find out that it was hereditary. Not that I was surprised since I have two great uncles had the same thing. The hardest part was when they wanted to do an amniocentesis to further their study with cleft. That was the point that this lab rat had had just about enough! No way was I about to let them stick a huge needle in my stomach that could risk hurting my child or risk us possibly losing him. They tried to convince me by telling me they could find out if there are any other issues, so we could decide what we wanted to do with the pregnancy. This made me sick. He was our baby, and we would be following God’s plan for him, not some “specialist’s” recommendations. I hated the visits with the specialists. It made it feel like a bad situation instead of a happy one like I wanted my pregnancy visits to be. There were just awful! My doctor on the other hand, was absolutely amazing!!! He really took it upon himself to do all he could for Jayden, even thought this was usually done by the pediatrician. He was so supportive of me and my emotions, and may have spent extra time with us on many of our visits just talking with us and being there. It made the whole process so much better. I really loved this doctor (which if you know me is really, really saying something!). He was also very sensitive to my sexual abuse as a child and the added struggle it brought to pregnancy check-ups and the delivery. He really made me feel in control of the situations I was dealing with and valued and special.

Just before finding out about our little Jayden’s special condition.

I told you I was getting beat up that morning! I guess he does not like the doctor either. What a spunky little guy. He still has this strong and fun (most of the time) personality today!

Covering his face with his arms and hands, before finally revealing his little cleft. I really do think he was looking out for his Mommy and her emotions. Bless that boy!

Got to love our ultrasound technician! My sister Cami was supposedly a “boy”, so my family was still convinced I was going to have a girl and not a boy, so she wrote this caption to point out that he really was a boy.

After a couple days of really struggling, Ben made me get dressed up and go out with him for a date! Thanks, sweetie! Even if I was a little frustrated with you for making me. I had fun and I really needed that!

My family really came together when we found out about Jayden’s cleft. My sweet little siblings begged my mom for jobs to do for money around the house, and spent their own hard-earned money on these things they found at garage sales for Jayden. My sister Lindsay (who was 10 at the time), even bought this high chair for him with her birthday money! They all said they just wanted him to know he was loved no matter what, and wanted him to have nice things. Did I mention that this was the high chair Ben and I liked, but at $200, we could not bring ourselves to buying it. Lindsay got it for a whopping $10! Ben and I were so touched by their sweet, huge gestures. My adorable little brother Derek was worried and came to me and said, “Can I still see him when he is born? I promise I won’t tease him. Even if he looks weird, I won’t tell him. I will just say he is handsome.” It was so adorable. The best part was when he met him after he was born for the first time, and he told me, “I love Jayden, and you know the best part about him? I don’t have to lie and say he is handsome, because he really is!” It was pretty much the cutest thing ever!

Now that I have written an account of what it was like then, I would like to write a little bit about what it is like now. First off, it really is not a huge deal. I have to remind myself that Jayden even had cleft lip now that he has had his first two surgeries (which I will post about later). He may need a few more surgeries including a bone graft at age 5 (really praying he doesn’t), but because he had his palate (praise the heavens for that), and just his gum line was cleft, we get to skip 12-18 surgeries. We were so grateful when they checked his mouth, and told us moments after I had delivered him that the palate was all there! Speaking about his delivery, his cute little cleft was one of the very first things my doctor pointed out, and we fell in love with it! This was not a reaction we were expecting to have, but it was his cleft and he was our baby. You may find this pretty weird, but we actually miss it(!). He had the BIGGEST, brightest smile with his cleft, and although we love his smile now and we’re so glad we were able to have it fixed for him (even if we are still paying the surgeries off two years later-it is so worth it!), we really do miss that cute, little cleft! I would like to sum up our cleft experience into 4 sections to help others out there that may be going through the same thing. I know that personal blogs about cleft were such a HUGE comfort to me throughout my own pregnancy and struggle with it.

 

1. It really is going to be okay. In fact, it will be great!

 

This little issue really is just that-little. They have amazing doctor’s and surgeons that can take such great care of your little one these days. Dr. Warnock (our cleft surgeon) and Primary Children’s Hospital will always have a special place in our heart because of what they did for our Jayden. They were so cute and sweet with him and you know what-he loved them! He always went into surgery cuddling with either the doctor or the anesthesiologist. He LOVED them! They had bubbles and balloons and talked to him rather than just about him, and he was always excited to see them. This made sending him back in to surgery and waiting SO much easier for Mommy and Daddy! Like I said, now that it is all over (for the most part), we have to remind ourselves that it actually happened. It really doe not affect Jayden’s life at all! Very few people notice the scar (although it does look a bit like his nose is running, so we sometimes get tissues for the cashier while checking out at the grocery store) and it is not a big deal. They will do touch up surgeries as necessary to keep things looking good as he gets older, but please believe me! You can do this, and everything will be great!!!

 

2. Don't beat yourself up with blame, stress, and worry.

 

The first words out of my mouth when they told me he had cleft were-“What did I do wrong?” Their response? “Absolutely nothing. These things just happen.” Not that it made me feel much better at the time, but it is true. You can only control what you can control, and you can’t blame yourself for what you have no control over. Easier said than done-believe me! This same motto goes for worrying about the surgeries before I had even met my child. I told Ben the big parenthood worrying stuff was just going to start a little bit earlier for us. It does not do a lot of good to worry before anything can be done, but try telling that to a worried, emotional, expectant mother, and you will have new worries on your hands. ;) The biggest thing that helped me was to trust that things will be okay, and that God will bring you to that point, because I promise you, he absolutely will! I am proof of that! Chances are, it will not be as bad as you think it would be, which is definitely true in our case. We all have worries and stresses in life, but what we let them do to us is often far worse than those things will do to us on their own. Just have faith that if you are doing the very best you can, and everything you can, the Lord will take care of the rest.

 

 

3. People can be mean, but they are more often nice. So, remember the positive and let go of the bad (even if it is hard).

 

I will probably never fully forget about some of the mean comments I got about my sweet baby while out and about with him. The absolute worst experience was when he was about 3 months old (a month before his first surgery), and I was stuck in line to check out at Wal-Mart. I had his car seat cover covering him to keep him away from the germs that flood public places during this time of year, but he was fussy, so I lifted it to talk to him to help keep him happy. He immediately started smiling and cooing back with his cute and adorable cleft smile. The woman behind me leaned over my shoulder to take a peak and then started tapping on my shoulder. I turned around expecting her to tell me how adorable he was, but was met with a very different line. “You know”, she said, “You really should not let your child be seen in public before fixing that face. It is just really awkward for people to have to look at.” I have never been more furious in all my life! How dare she! What a horrible woman to complain about a sweet baby’s face! I tried to be nice and just told her that I was sorry that she could not see true beauty when it was right in front of her. “You are just saying that because you are his mother”, she snapped back. Seriously? What a witch! I thought to myself. At this point, with everyone staring at us I began to feel pretty awkward and just wanted to cry. I decided to just ignore her, but she grabbed my shoulder and turned me around to face her and said, “Are you listening to me? Why haven’t you covered his face? It really is not very nice to look at.” First off, do not  complain about my child! He is BEAUTIFUL!!! Second, don’t you dare touch me! I could not be Christ-like any longer. I stood there facing her and looked at her with her frizzy hair, big round face that was wrinkled with, no makeup standing there telling me what an ugly child I had in her ugly sweats and burst out “Well, there is no bag on your face, and none of us are complaining about it!” It came out before I even realized I was saying it. I stood there awkwardly as she just looked at me completely disgusted with me, feeling bad that I had let her get the better of me. It was right about this time that everyone around us started clapping and she stormed off. I apologized when I got to the checker, but he just said “Don’t be sorry, because I was getting ready to deck her! Your baby is adorable and you had every right to stand up for him. I am surprised you were nice for as long as you were.” I went home and vented about my experience on Facebook and was very comforted by the 80 plus comments telling me how awful that woman was, and how cute my baby was. Moral of the story? People are cruel, but there are far more nice people that mean ones. Another thing to consider? If she is that mean to others, how mean is she to herself. It is pretty sad if you ask me. You have to just feel bad for these people, because no one with true self esteem could ever act that way, in my opinion. We have had so many more positive comments about our sweet baby. WAY too many to count against the very few negative ones.

 

4. This trial (and any trial for that matter) can bring far more blessings than heartache.

 

I can bear absolute testimony that Ben and I consider this experience more of a blessing than a curse in our life, although our hearts still break that Jayden ever had to go through it. Some of these blessings include: Ben and I becoming closer than ever as a couple, Jayden becoming a bigger and even more real part of our lives before he was even born, my family and friends really coming together and being a huge blessing with their love and concern and showing us what true charity is all about, being able to know beforehand so that we could best prepare to make it the best the situation could be for our Jayden, and the biggest blessing is the growth and strength it brought to us and our testimonies and faith in the Lord. On harder days, we really try to focus on that last blessing.

In a nutshell, hang in there because it will be okay, trust in the Lord, count your blessings, let go of the bad, and always believe in good things to come!