Cole – Metopic

After having a wonderful boy and girl, our family was surprised to hear we were to be blessed with a new baby in August 2009. We couldn’t be happier, and everyone was super excited for us. Mr. Cole Dennis was born at 5:36 pm on April 29th 2010 at St. Luke’s here in the St. Louis area, just 2 days after his big sister turned 6. He was a perfect bundle of joy, 6lbs 3oz of LOVE!!! We welcomed our new boy by building him his very own room and baby proofing, although our home was pretty much still baby proofed from our older son. Cole was an amazing baby, took to life like a pro, and was growing normally, he was such an easy going, lovable lil man. Until his 4 month check up at our pediatricians office on Sept. 7th, when our doctor noticed what she called a red flag, in the shape of my perfect son’s head. She told me to be prepared he may need surgery. And we thought shots were going to be hard…..I started freaking out, and was of course by myself. I called my husband right away as the doctor left the room to get some paperwork for me to read about the condition she thought Cole may have. He was dumbfounded and didn’t know what I was talking about, and as I think about it….I realize now, I didn’t know what I was talking about either. Then, nurse Leslie came in with a box of tissues, I knew right then and there……SOMETHINGS WRONG. It was the worst day of my life. As Leslie consoled me, and the doctor rambled on and on and I was scared to death…..I looked at Cole and he smiled at me. I was LOST in his eyes and couldn’t tell you what the doctor was saying, it all sounded the same to me!!!! I tried to hold myself together to make to to the truck, so I could break down the way I wanted, I was trying to be the strong mom, the “I can handle anything” mom. And once we were in the truck I just lost it. I think I needed to loose it, so I could get over that part, and get to doing what’s next. We made our CT appt, right away. Later the same week at Cardinal Glennon.

Then came the roller coaster ride of hell. See, our doctor was out of the office and she had her fill-in call me with the results… biggie right. However, her fill-in was UNaware of Cole’s case and read the CT scan to me, as benign. She said no worries everything looks great….and again threw that benign word at me, and told me to breath easy. I DID TOO, but only for a minute. I kept thinking to myself, how can his skull or any bones be benign? Is that right, that doesn’t sound right? I was worried and called back and asked her how did the SUTURES in my sons head look, the bones and his whole noggin. That’s when she said, well your right….I was looking at the brain structure and cells. I better call the radiologist back, I asked if I could just call them for crying out load, as I was uncontrollably upset….she said that she would be the one they would only talk to and assured me she’d call me right back. AND SHE DID…….the radiologist confirmed the metopic suture was closed and referred me to a plastic surgeon. I knew it! I just knew it!!! See, I had been doing my research that week to find out as much info on this “craniosynostosis” and just didn’t think benign, was the word I was looking for. In children with craniosynostosis the sutures in the skull close prematurely and can cause a laundry list of future issues, MOST importantly not giving the brain proper room to grow. I was heartbroken knowing that my son has this and WILL need surgery, he’s just a baby…..just started eating solid food, never had a dose of Tylenol in his life and now he’s facing surgery. WHY? I was empty because I knew that I could do nothing about this, and I’m his mama, I can fix anything and make it better, right! I had to be strong for my family, but was having a hard time finding the strength. I cried endlessly, felt sorry for my son, and got sick from worrying about what can happen. I was so scared, and quite frankly IT SUCKED! Once we knew what had to happen and who we needed to see, that’s when I began doing even MORE research and to my surprise found that St. Louis Children’s Hospital has a plastic surgeon/neurosurgeon team that can approach this endoscopic, as in a small incision is made and NO blood transfusions, minimal blood loss, shorter hospital stays, and so on and so forth. Dang right I called them right then and there, set up an appt. right away, like the next week.
I had a CD of my sons CT scan equipped with a box of tissues, as we met with Sybil Naidoo (nurse practitioner) and Doctors Woo and Smyth on our wedding anniversary Sept. 21. Dr. Woo explained that Cole WAS a candidate for the endoscopic procedure and that he would like to set up surgery asap, like next week. Things were happening super fast, and I felt another roller coaster ride from hell coming, but my husband and I talked and said YES, let’s get this done. See, endoscopic surgery is only successful in baby’s under 6 months….Cole was working on 5 months and so time was a lil bit of a issue. We didn’t have it, we needed to decide and get it over with. WE DID, we left the office that day with a Sept 28th date for surgery, HELLO, we had a week to prepare! Well, honestly I think in the back of my mind I was always trying to prepare….we knew it was coming! I kept busy like a 9 month pregnant lady would do if she was nesting. I cleaned, and cleaned….I got two of every single item describable for the house, it was like I was preparing to bring a baby home again…I disinfected and wiped every wall of the house down….and time flew. Before we knew it, it was time! It was the night before surgery. We were the first case that morning and were to be downtown super early and hit the hay super early. And can you believe it, I couldn’t sleep….imagine that, right. I paced the halls, played on Facebook, watched TV, even did a load of laundry. My stomach was a empty pit of emptiness, on our way that morning….it was raining. It was about 6ish not much going on just yet at the hospital, quiet, staff getting ready for the day….we were greeted and showed to our private waiting area. When they came to get us to go back to prep, I could barely walk. But I was there and doing what a mom needed to do. This was all for COLE and he’s number one, he needs this, and WILL get this surgery. Tracey….just repeat that over and over….a moms gotta do, what a moms gotta do….even if it SUCKS! I think I was borderline insane by that time, but I was there. Bill was great support the whole time, UNTIL it came time to get Cole in his lil robe thing. He began to cry, I began to cry as well….I think it hit him then, it’s time and your boy’s getting surgery. All of a sudden it hit me, and I became stronger….I could talk better and was consoling Bill, it was role reversal in its finest, and that’s when I knew it would be OK. Yeah my big old badass husbands crying and my babies getting surgery today, but it will be OK…..GODS here! I knew it….I just knew IT! I couldn’t bring myself to hand Cole to the surgeon that morning, Bill was very strong in taking that feat, but knew it would be OK….even if were crying in the hallway like a couple crazy people….I knew it would be OK. And it was…..Cole’s surgery flew by, thanks to my bestest friend Jen for coming to sit with us….the first part of the surgery I was occupied with me being sure she was able to find us, and the second part was occupied by talking with her and before I knew it, my lil sorta like applebee’s buzzer was going off and it was time to head to recovery. They even let Jen ride up the elevator with us all….Cole was still sleeping, occasionally giving a big sigh as we headed to the next venture in this mission.
Recovery was brief and uneventful. We stayed with a team of three nurses who monitored his vitals and every move for about 20 minutes before getting the OK to head to our new room in the PICU. Cole was in room 28 out of 42 in the PICU and once there, he woke up. He was unhappy, but awake. As I tried to pick him up to love on him he shouted in pain, I almost fainted as I was clueless to the pain he was in. I was lucky my PICU nurse Sharon was behind me. Unfortunate it is something that happens to often, parents are known to faint when seeing their child in pain, she explained to me as if it was routine or something. She then suggested we give Cole a dose of morphine to take the edge off and to help him sleep….sleep is good for healing. I said yes I do not want him in pain of course. It was the only dose of morphine he had in the PICU, for when he woke up he smiled and was playing, not but maybe 4 hours after surgery, HE WAS SMILING AT ME! The nurses were even surprised to see such a big smile. Just Tylenol the rest of our stay. Cole was eating, well, sucking a bottle down. He seemed great to me, but had that darn, scrap on his head, as my 6 year old explained once to her friends, and I didn’t like it. It was little only 3 inches or so, and he still had marker all over his forehead from where they wrote on him, marking the place to remove bone. It took some getting use too. He didn’t notice a thing except all the toys, a.k.a. wires and such coming from his body. He loved to send the nurses running by pulling them off. New toys are good. Cole’s overnight stay was great and we were headed home after breakfast. Just like that, we were headed HOME! Now, Cole’s swelling began and whoa, that was a shocker….I’d say about 4-5 days till the swelling went down, and he had terrible black eyes. A good friend once commented on a Facebook pic, he’s the cutest lil raccoon! Cole was fitted with a helmet post-op, which would insure a nice round regrowth, as the body will still continue to grow bone. Cole’s suture will once again close, but this time it will be at the right time in life and not prematurely. He adjusted well to his new “hat”, and has been progressing wonderfully. He will have another CT scan done one year post-op, but is trucking along like any almost one year old. As his first birthday approaches I think back at the last year and know, we may be the luckiest family in the world. I will never forget the strength Cole gave me during this time, and how strong I was for him, because deep down handing him over to a surgeon at 4 months old is only the beginning of the things we’d all do for our babies!