ADVOCATING FOR CALIYAH

Just as we wrapped up our meeting with the resident, a doctor walked in, and he was someone we hadn't met before. His first words were, "Hi, I am Dr.xxx; I will be doing your daughter's tracheostomy surgery tomorrow. It could be at 7:30 am or could be at 2:00 pm; it all depends on the openings, but we will do our best to give call you an hour prior. " Wow, what do you do with all that information?! The surgery we had been waiting for was all of a sudden happening tomorrow. Hospital life will always keep you on your toes; whenever you let your guard down, you can get hit with unexpected news. We tried to find the good in the news, Caliyah was finally getting her surgery, and although it wasn't from our original doctor, it was a highly recommended doctor.

We went home still a little upset from our nurse's withholding information, but we needed to shift gears and get ready for Caliyah's first big surgery. We tossed and turned that night and woke up at 6:00 am, got dressed, and headed to the hospital. We wanted to make sure we were there just in case she was the first surgery of the day. Of course, she didn't go back until 2:00 pm. While we waited for the call we read her books, daddy played music and sang to her, and we got some last-minute cuddles. Once she was rolled back, we sat there and did the waiting game.

The anxiety hit once her room was so empty; her surgery lasted for 90 mins, but with the prep and clean up, it made it a 3-hour wait. It felt like I didn't take a breath until we got the call that she was out of surgery, and it went well! We waited for what seemed like forever to go back. We walked into her room, and there was our baby, but she looked so different. Rome and I both looked at each other a little shocked, but none of the doctors seemed to be concerned. Caliyah's face was so swollen, her eyes were so puffy, but we kept thinking this must be normal since no one was saying anything. She started to fade into a deep sleep, and we headed home. Everything seemed okay until we were woken up by a 6:00 am phone call from Seattle Children's Hospital. That call started our roughest week since Caliyah was born.

Before and after scan of her skull. All the holes are soft spots, most kids have tons of them and they fill up completely with bone by the age of two. The bottom picture shows you the strip of bone they removed.

We never get calls before 9:00 am so we knew before answering that this wasn’t good news. The resident was calling to tell us that overnight Caliyah didn’t have a good reaction to her surgery, her face swole up even more than when we last saw her, and she had also gotten chemosis in her eyes. Chemosis is a severe irritation of the eye. She said she wanted to call us because her state was visually hard to take in, and she didn’t want us to be in shock. My heart just dropped to my stomach. I already knew I couldn’t handle it; I wasn’t planning on going before I heard the news, and when Rome offered to go solo, it was like a weight lifted off my shoulders. He went and called me immediately, he sent me a picture, and I broke down. Her eyes were so swollen and had some blood discharge. The hard part was that it was only her face; that was swollen. The rest of her little body looked the same.  The doctors continued to assure us that she had an adverse reaction and that everything would be fine, but in our gut, we just didn’’t feel it.

After her first day of recovery, our parent instinct went into full gear. We spoke to every nurse in our tribe, shared pictures, and got feedback; they all felt the same that this wasn't a normal response to receiving a trach. We were still fresh from her eye issues, so we weren't going to be quiet now. Those doctors heard us LOUD and clear—the things you will do for your baby. We called and spoke to the attending doctor, which we learned is the doctor who can make changes to her care. We emailed her pre-op, 2 hours post-op, and 24 hours post-op pictures, and she was in total shock by what she saw. To give you an example, she gained 1.5 lbs of fluid and all in her face. She immediately called for a test to see if she had an infection and gave her antibiotics just in case. She then had a scan to see if she had any blood clots. Everything came back negative, and as great of news that was, it was also so hard because we had no answer as to why she was having this reaction. Once her craniofacial ( the doctors who are experts in her syndrome) pediatrician saw her, they immediately pushed up her craniectomy surgery by a week. They said she had way too much buildup of fluid, and it was causing her head to swell up and putting unneeded pressure on her brain and eyes. Months later, we still don't know why she responded in this way, but we believe it has to do with her Pfeiffer Syndrome genotype.

She was on a high level on morphine; they assured us she couldn't feel anything, but we could see it in her eyes that she was uncomfortable. Her tracheostomy surgery required her to be on bed rest for her stoma to heal correctly. So they laid her at an angle to let the fluid drain, but they couldn't move her in the fear that it would slow down her tracheostomy recovery. We did not get much sleep that week; we had extreme anxiety with every phone call. It felt like the slowest week ever. This was the second time I balled in the hospital; tears continued to run down my face as I looked at my love so helpless.

My first snuggle with Caliyah after her trach and craniectomy surgery.

We finally reached a week from surgery, and it was time for Caliyah's craniectomy. This was the surgery that put our faith to the test. It was 5 hours from prep, operation, and recovery. We knew this would relieve her pressure, but the idea of strips of bone being removed from her skull was terrifying. Due to the intensity of the surgery, there was a plastic surgeon and a neurosurgeon working together—one to remove the bone and the other to protect her brain. The goal of the operation is to open up the fused sutures in her skull and then let time take its course, and the bone regenerates, but now the brain has expanded in the process creating greater space and removing the pressure. This surgery went as well as it good go, both doctors came out and reassured us that we should see her swelling go down.

As each day passed, the swelling went down, her sedation levels decreased, and we began to see Cali come back to life. This girl is such a little fighter, even with all the morphine she found a way to move. The doctors would say“she will be pretty out of it, and won't make much movement for a while”,” and there she would be kicking her feet and lifting her arms. This would be a continued trend, the doctors setting expectations, and our Cali exceeding them. To help her recover correctly from her trach, we couldn't pick her up, and then she went right into her craniectomy surgery, so it had been ten days since I got to hold her. I remember the first snuggle; she fell asleep instantly; it was like she was waiting for my touch. I never knew how important our love and touch could be for her healing journey. I know she felt her Dad and myself in that room. She felt the energy from the prayers we said every day. That week was an all-time low for my mental; I cried every night that week. The hard part was that Rome and I both were in the trenches together. Usually, one of us is strong and can lift the other, not this time. Neither one of us had the right words to pull us out of this funk. The only thing that saved us was seeing Caliyah getting better as each day passed.