I have a LOVE-HATE relationship with the whole feeding Sophie issue. From the start it has been such a challenge, I swear I feel like she got the shit (oh, excuse my frankness) end of this whole sensory, muscle control, high palate and texture aversion drama thanks to Cri du Chat Syndrome.
First it was the learning to breathe, suck and swallow simultaneously that was just beyond frustrating and I cried all the time her first few months of life. I would pray so much I used to think I would drive God crazy with my requests but I just longed to watch her eat once without choking and one day she did. That day was amazing, I was even able to nurse her. I was so elated I thought we were in the clear but then she started refluxing through her nose and mouth all the time and choke constantly, it was so scary. I remember when she was about 3 months old her Godfather was visiting and she had a choking episode, he had to walk away in tears because it broke his heart to see her gasping for air while practically drowning in her reflux. By then I had become a robot and was able to clear her airway in a matter of seconds. That lasted until about she was about a year old. Imagine never being able to look away from your child with the fear that they can die if you do, the fact that she was such a quiet baby did not help. I would not have made it through her first year and still be sane had it not been for the apnea monitor that would alert me to pauses in breathing and irregular heart tones.
When Sophie started feeding therapy it was very difficult on her she could not handle anything in her mouth or around her face. I tried and tried to feed her baby food but she would seldom take it. It took a good 6 months before we were able to get her to accept mashed foods with a spoon or place objects like the nuk brush around her mouth. She had started learning to chew when she became extremely sick and was hospitalized for a week, that hospitalization caused her to regress. It was heartbreaking for me, we were right back to square one but this time she had become more feisty and less cooperative. When we switched to in home therapy just six months ago we got a new speech/feeding therapist. She is great, very positive and has a great connection with Sophie. Sophie started responding better with her than the previous therapist and was doing great she had just started to use her hands for self feeding and was learning to chew. She had finally conquered oatmeal and was accepting to mouthing new fruits and vegis without resistance when it happened again. Last month she was hospitalized for yet another infection although it was only for a day it really drained her, she again lost all interest in any aspect of feeding. It has been so hard for me and I have just kind of let it go allowing her to just have her Pedisure, drinks are so hard now that she is aspirating too. I try on a day-to-day basis to introduce food again but I don’t want to “make food a battle”. From fear of her losing weight I have not been following the therapists instructions to let her go a little hungry so that she wants food. I’m guilty of not wanting to deal with it right now.
Sophie is very petite and her tummy must be tiny because she only drinks 3-4oz at a time every 2-3 hours. So after beating myself up for not getting her back on the eating wagon I weighed her to make sure she had not dropped under 20 lbs and today I let her go hungry, she had her 8am bottle and I did not offer anything until noon. She does not communicate when she is hungry yet, she is not a crier she just gets frustrated when she is hungry. So I made her some oatmeal but the spanish one with the oats really ground down so there is not really much texture and it’s silky, I made it with whole milk, added powdered milk for added calories and added her vitamins (vitamin B complex, DHA supplement and codfish liver oil with iodine all approved by her dr) and she ate 2 tablespoons, I was sooooooo HAPPY!! It was the first time she was really paying attention to me so we worked on signs like help drink and help eat and she did help when I did the signs! So not only did she have some food she was participating in feeding and helping hold the cup while drinking. I waited a few more hours after that and gave her a bottle of Pediasure which she drank all of. Emily then gave her some ice cream as a snack and she ate some. The best part was at dinner she ate 2-3 tablespoons of rice and beans without expelling it and was even trying to chew. Today was a good day question is will it last?
I’ve spent the last month overwhelmed and crying because I’m afraid she won’t learn how to eat. When I see my 8 month old trying to chew his food, using his hands to reach for food and now self feeding finger foods my desire to see her eat grows more each day. It’s a hard and scary road to travel not knowing if she will ever learn how to eat, wondering if she will ever overcome all the oral sensory issues she has along with all the aversions. Your appreciation for the ability to control your food within your mouth, use your tongue and know how to chew grows more than you could have ever imagined.
I imagine I should get used to this whole love-hate feeding relationship, I love it when we have good day like today but I hate not knowing when she will eat again. Hoping we are finally going in the right direction and I’m praying for no back steps!