Over the past 6 months I have gotten to know and learn the face of fear, the face of concern and the face of pain very well. I have also learned to read between the lines of explanations. Word choice, tone of voice and the face can tell an untold story in moments. I know what the doctor is going to say before the first word.
We have had an eventful week to say the least. It started last Tuesday morning with Cara’s swallow study. Being our typical selves, Dan and I chatted and joked with the speech therapist, nurse and radiologist while we got ready for the study. We joked about the stylish lead aprons, the radioactive cocktail, and maintained a light environment to help hide the fact that fear filled our minds and hearts. It wasn’t a fear of the result but fear of accepting what we already know. A feeding tube.
We were on the fence for a few months on pulling the trigger for a swallow study. Cara’s physical therapist recommended it but opinions and advice clouded the decision and for some time it made more sense to decide against a swallow study. We tried to thicken, take it slow, a slower flow nipple, avoid feeding when she is sleepy, etc… It didn’t make a difference. She would still cough and choke every few feedings. She never had upper or lower respiratory problems and the choking wasn’t every feeding. I felt pulled in two directions. The swallow study being helpful or subjecting my daughter to radiation and the possibility of aspirating barium is not worth the information. Finally it took a stern voice and a face full of concern from Cara’s physical therapist that tipped the scale to going forward with the study. The couple of weeks following that physical therapy session, Cara had a follow-up appointment with her neurologist and developmental pediatrician. Two doctors, the same face, the same look of concern and the same advice. Get a swallow study.
The study starts. Cara starts sucking from the barium filled bottle. Everything is going well. No pause. No coughing. The radiologist simply says “There she goes.” and the feeding therapist instructs us to stop feeding Cara and hand her the bottle. “I am going to try thickening it to “nectar” it’s like the consistency of V8.” We give Cara the bottle again. She begins sucking. Not even a minute passes and the radiologist looks at the therapist and nods her head. Again, we are instructed to stop and the therapist fills a syringe with barium and thickens it to “honey”. Cara takes the honey thick liquid via an oral syringe. Less than a minute later the study stops. We thank and say farewell to the radiologist. “I’d like to go over some clips from the study.” After we change Cara and remove our lead gear we head over to the monitor. The therapists face and voice tells me everything before she says the words. A feeding tube.
We discovered that Cara aspirates while she drinks. Often times changing the consistency remedies the problem but that is not the case for Cara. She aspirated it all. “It is scary to see and I am very surprised she has not had any respiratory problems yet.” Later that day we get a call from one of Cara’s doctors. “Cara is at a very high risk for aspiration pneumonia.” “It is not safe for her to eat.” “I recommend Cara get a gastrostomy tube as soon as possible”
Thursday we meet with the newest member of Cara’s medical team, MD number 6, a gastroenterologist. He confirms that Cara needs a gastrostomy tube (g-tube). After the meeting we wait in the waiting room listening to the scheduler move appointments and clear his schedule for the next morning. Cara is scheduled to check in to the hospital at 9am the following day. After going under general anesthesia a tube was placed in Cara’s stomach via endoscopy. The procedure and hospital stay is uneventful. We now feed Cara through a tube and port on the outside of her stomach.
There is a swirl of emotions wrapped up with Cara needing a feeding tube. I was scared. It was very scary to see liquid enter Cara’s wind pipe without her coughing, it was time-consuming to feed Cara because it took a lot of effort for her to suck on a bottle and she would tire very quickly. With the feeding tube we can relax in the thought that Cara can get what she needs safely, with less effort and can save the energy to build her skills. I am angry. My initial reaction to seeing the video of her aspirating was to scream at the top of my lungs at the world. Just another thing taken away from her. Ripped away unfairly. I am angry that we didn’t listen to the advice of her medical team earlier and get the swallow study sooner. I am relieved. We are very lucky that Cara has not had pneumonia. Pneumonia for a baby her age with her problems is very dangerous. I am hurt. Part of the warm bonding you feel when feeding your child from breast or bottle is gone. I still cuddle with her when using the tube and pump but it’s not the same. I don’t know if Cara will ever have pictures and video with rice cereal all over her face, spaghetti in her hair and fists full of frosting and birthday cake. Just one more box checked under “different”, “something wrong”, “special needs”.
We came home Saturday and receive an in-home delivery of medical supplies and training. Every month a white van will deliver bags with tubes and formula. Last night, Dan was putting away the pole that we hook Cara’s pump and bag to ( not much different from the poles that hold the IV pump and bag in a hospital) with a shadow of pain and defeat on his face he looks at me and says “You know what the sad thing is?” “I am already used to this thing.”
We have a nice day on Sunday playing with Natalie, resting and spending time with my parents. Sunday night I pack another overnight bag.
Monday morning we are in the car headed to St. Vincent’s hospital for an EEG. Cara get’s to play android baby for a full 24 hours. She spends the bulk of her stay laying in the hospital bed/crib with a hundred wires stuck on her head. This is a fairly pain-free hospital visit. We check out late Tuesday morning and after a quick pit stop at the gift shop to pick up a little something for Natalie, we head home. The difficult part of this chapter is waiting for the results.
So, here we are. Feeding tube, another doctor, another therapist, more appointments, more results and more waiting.
I feel like I am wearing a mask most of the time. I switch to the appropriate mask according to the situation. Behind that mask is a blank face. My face is emotionless. My face is waiting.
We were informed on Wednesday of last week that my grandmother in Japan passed away. She was 101 and the most positive and selfless person I have ever known. She had a fire that burns bright even after her passing. She moved and changed everyone that crossed her path. She could warm your heart with a smile and clear clouds with a laugh. Cara has her eyes. Cara has her smile. Cara has her spirit. It’s this spirit, this fire, the same infectious warmth and joy in the eyes of my little girl that keeps a candle of hope burning in me. It’s a flame that I know will never, no matter what happens, go out.
My brother, Vincent, posted as his status on Facebook the day Cara had the procedure to place her tube, “I dedicate my day to my little warrior princess Cara! She is as brave as they come and tougher than any I’ve ever met and she’s not even 1-year-old!” This made me smile.Whatever we are feeling and the pain that binds us, it is harder for Cara.
To our little warrior princess Cara: We love you. We believe in you. We have faith in you. We will fight with you.
Update: Cara’s EEG showed abnormal activity that is new but nothing urgent. She did not have any seizures during her stay and for now we will keep Cara on her current mediation and dose.