I Wish I'd Known...

We've had a lot going on in our cleft world lately. We are currently looking for a new cleft team for Jesse. His old team closed their doors, the plastic surgeon decided to open her own private practice, so she will still be performing plastic surgery, but the "cleft team" is dissolving. There are a handful of cleft teams in the Chicagoland area, I've been doing my research and talked to other parents about their teams and experiences. We've chosen to meet with Shriner's Hospital and Lurie Children's Hospital. We narrowed it down to these two because they are both children's hospitals and if Jesse does need another surgery, I would prefer it be a children's hospital.

We have appointments set up for the end of February and early March to meet with both teams. I am excited and nervous. I am interested to see another plastic surgeon's take on Jesse's clefts and surgeries; I am also interested in a new speech evaluation. I don't have any major concerns about either, just maybe some fresh eyes/ears might be a good thing.

In addition to finding a new team, we are also nearing Jesse's 3rd birthday. When he turns 3 he will be transferred out of the Early Intervention speech program and entering the school system. I am waiting to hear back from the Child & Family Connections coordinator to get that scheduled. If he qualifies for their program, he will get speech and pre-school for free. Of course I have mixed feelings about this. Free pre-school would be great, but I hope Jesse's speech is far enough along that he doesn't need to be in the program.

Lastly, last week I submitted Jesse's Story for a book called, "I Wish I'd Known How Much I'd Love You." This is how the website describes what the book will be, "We are creating a book of stories, photos and cleft related information. With this book, we hope to bring encouragement and support to parents of cleft affected children."  http://www.iwishidknown.yolasite.com

I took the story I wrote for MiCleft.org and revised it a bit since it's been about a year and a half since I wrote it. Here it is.

Jesse's Story

Jesse is my first and only child. When I got pregnant I had a lot to learn. But I was 34 years old, so the maturity was certainly there and I knew I had to start having kids before it got too late! I read my week-by-week pregnancy book, I visited the baby websites daily and signed up for the emails. I was very excited to start on this new adventure in life!

My pregnancy was totally normal, in fact, I enjoyed every second of it. I think when I was pregnant, was when I was most at peace in my life. I had a blood test done early in my pregnancy to check for things like Down Syndrome and Spina-Bifida; everything came back normal. All my ultrasounds and heartbeat checks were normal. My due date approached and I had a doctor appointment on my due-date. The doctor told me my body was ready and the baby was ready; then asked if I wanted to be induced so he didn’t get too big for me to deliver. I agreed and we scheduled my induction for the following day. I was a little scared about the whole childbirth thing, but I told myself millions people give birth all the time since the beginning of time, I can do this.

My husband and I got to the hospital bright and early, labor and delivery was slow that day, and most of the rooms were empty so things got started right away. Got me hooked up to the monitors, put in the IV and soon injected me with Petocin. Contractions started and things moved along until I ended-up getting the epidural in the afternoon. Around 5:30 I was dilated enough to start pushing. Turns out he was “sunny-side up,” so pushing was hard. I finally delivered at 7:45pm. They put him on my belly, my husband cut the cord, and then they took him to examine him, clean him off a little and take his measurements. I was so exhausted after 12 hours of labor and over 2 hours pushing! I am not really sure when I heard it, but during all this heard the word “cleft” and “his palate is intact.” I honestly didn’t know what those things meant. I started getting worried. I started thinking something was terribly wrong.

They finally handed him to me and I saw his face, I instantly put the pieces together. He had a cleft lip. I kept my emotions hidden, but I looked at him --- he wasn’t the child I was expecting. Honestly, I was devastated. I told myself, “Ok, you can handle this, it’s just a little lip thing.” I spent some time with him and tried breastfeeding but had no luck. A few hours later the nurses took him away to get bathed, sent me to my room and told me he would be joining me within the hour. That hour came and went, and he hadn’t come back. Almost 2 hours later a doctor came in. He informed us our son not only had a cleft lip, but also a cleft soft palate and a heart murmur; that he was in NICU and we could see him in an hour. When I finally got to see him I held him and just cried. I was in shock that my baby was in the NICU and he wasn’t “perfect.” I don’t think I even slept that night. I cried, a lot.

The following morning was hard. I didn’t have my baby there by my side. Around 11am I was told he would be released from the NICU shortly and the hole in his heart had healed itself. They brought him in and I was finally able to feed him myself. Soon a social worker came in. She was also born with a cleft and she gave us a lot of information. My mind was more at ease after her visit because I was very uneducated about clefts. Later that day a plastic surgeon came to visit. She explained a little about clefts, her cleft team, and the surgeries involved. A weight was lifted after that and I was able to see my son’s face in a whole new light. I knew it wasn’t going to be easy, but at least I understood what we were facing.

The next day we were released and went home to start our new life as a family. I was much more relaxed. I was able to take deep breaths and I was able to finally sleep. We had some visitors in the first few days, one being my aunt. I will never forget what she told me, “God gave him to you because you could handle it.” I will NEVER forget those words. At first I wasn’t so sure I could handle it, but looking back now, she was right.

The first few months he was alive I had a lot of fears, anxiety, guilt and self consciousness. I thought people would judge me, like I did something to cause this. I felt a lot of guilt because I, really thought I did something to cause this. I still hadn’t realized how common clefts were and I felt the need to explain it when people looked at him. I felt very alone. My husband didn’t even understand what I was going through. Feeding was challenging. Since he never nursed, I chose to pump, especially since I knew he’d be having surgery and needed as many antibodies as possible, and that breast milk was best for him. I did supplement with formula as well. We did not use any special bottle. I just used a red preemie nipple with an X cut. He was eating, but it took a long time. He was burning a lot of calories, just to replenish those calories used for eating. He had little weight gain, but it wasn’t dangerously low. He was around the twenty-fifth percentile. He was small, but healthy. His weight gain was monitored by his pediatrician and cleft team. We kept a journal or his feedings so we would know how many ounces he consumed in a day so we could share the information with his doctors.

At 6 weeks old we scheduled a surgery date for when he would be 3 months. All would go as planned as long as he continued to gain. Aside from the eating issues, he had some minor breathing issues. He couldn’t sleep on his back, or he’d choke. He slept in his swing for the first few months, then found out he was able to sleep in his crib on a positioning wedge, on his side. I discovered this when I had him on the couch one day. I placed him on his side and he fell right to sleep, so I figured I’d give it a try in the crib that night. Worked wonders!

Time came for his first surgery. They would be repairing his lip, nose, and inserting ear tubes (since he had fluids in his ears since shortly after birth). Needless-to-say, I was a wreck. A lot of fear and anxiety ran through me. I felt as if I was going crazy, but when he needed me to be his advocate, I was there for him. I was strong and did everything I needed to do. It wasn’t easy watching him get taken away into surgery, but I knew it was best for him. I sat anxiously in the waiting room for the doctor to come out and tell me the surgery was a success and I could go see him, which she did after a few long hours. I was so sad to see him in pain, but it was the start of a new beginning.

Recovery Room

7 Days Post-Op

Within days my little boy was smiling again, eating well and getting back to his old happy self. At four months old he just did not seem satisfied with the formula (I stopped pumping before surgery.), so I decided to try some cereal. He loved it from the beginning and started packing on the pounds. This is what he needed, REAL food. A few weeks later he was eating pureed fruits, then vegetables. By eight months old he was not a little boy any more --- he was way up to the ninetieth percentile! He was eating all sorts of food, even table food. We did have some challenges, like sneezing, because food would get up into his nasal cavity, then of course would come out his nose which couldn’t be a pleasant experience. But he managed to get through it, I think it was because a full belly was worth it.

When it came time for his soft palate surgery at 10 months old, there was no doubt he’d be healthy enough. He was huge! Of course I had the anxiety and fear just like the first surgery, but when it came down to it, I was strong like I needed to be for him and for myself. Recovery was much harder and longer this time around, but once again we managed to get through it. After the worst part of recovery was over, things changed. He was making new sounds, he didn’t sneeze when he ate, and food didn’t come out his nose. The surgery worked! Within a few months he started sucking and by 15 months old, he could drink from a straw, which is a big accomplishment.

Cleft Soft Palate

Palate Surgery Post-Op

I now have a happy, healthy little boy who’s turning 3 in a few months and look how far we’ve come! I am proud of him and I am proud of myself. I remember my aunts words again, “God gave him to you, because you can handle it.” I CAN handle it. Instead of being ashamed of having a child with a cleft, I now share it and educate people about it, and I have put myself out-there to help people who feel the way I felt when I saw my child for the first time. I’ve turned those negative feelings into good…into helping, educating, inspiring and sharing our story.

I’ve learned bravery throughout this journey. Not so much because I wanted to, but because I NEEDED to; for myself and my son. I hope I can teach him to be a brave child, and one day a brave man. I also hope one day he can educate and inspire others too, and make a real difference in this world.