When you become a parent you quickly learn what your most important responsibilities are to your new baby and their order of importance. Number one, you keep them safe. Away from harm, away from sickness, away from anything that will make them feel like they are insecure in your arms. Number two, you keep them nourished, you feed them. Everything else after these two are small in comparison. Diaper changes matter more to the parent than they do to the baby and having a baby sit in a diaper for too long certainly won’t change their future too much. Toys and entertainment are important, but more so later when the child becomes more interactive. Sleep, well, at first they just sleep when they are tired and you have absolutely no control over how that’s going to go. So it really boils down to these first two responsibilities, and if you can’t see them through, that’s a parental epic fail.
I’ve felt like an epic fail since Aleck was two months old. That’s when I first started to address the problem of Aleck’s eating, or lack of eating. First I called a lactation consultant, she sent me to a speech pathologist, we went to see a GI, he had his lungs scoped and throat checked by an ENT, we saw another speech & feeding specialist, we have a nutritionist, we are now seeing another speech & feeding specialist, we went back to our ENT, we are getting recommendations for new GI’s, we go back and forth to our pediatrician, we tried an NG tube, we tried an NJ tube, we add olive oil to his food, we add corn syrup and calorie boosters to his bottles, we feed him avocado every day, we feed him full fat yogurt, we feed him chocolate pudding, we give him apple juice non stop, we add butter to his fruit, we’ve fed him at 11pm, we’ve fed him at 2:45am, we’ve tried feeding him every four hours, we’ve run out of options.
In the last month Aleck has lost 4 ounces. That’s not a lot for other babies, but for Aleck it’s huge. He spent the second half of December throwing up most of his feeds, both during the middle of the night and during the day. Sometimes it’s because he chokes on a Cheerio, sometimes its because his daddy made him laugh really hard after a big lunch, sometimes its during a nap, sometimes its after a nap, sometimes its in the middle of the night, sometimes its while he’s sitting in his high chair, it always feels like a huge failure. Right now his tummy is gone, his ribs are poking through his clothes, his legs and arms look like string beans, his face is pretty gaunt. He’s 15 months old and he’s eating the amount a 3 month old would eat, weighing like a 5 month old.
Since Aleck was two weeks old I’ve been concerned about his breathing. I heard his smooth newborn breathing change when he was two weeks old and immediately contacted our pediatrician at the time. They told me it was the acid reflux. My sister said he sounded like a pug, “He’s a mouth breather Lynnie, just like you were.” We laughed it off. When they scoped him in February nobody noticed anything usual about his nose. He has a level one cleft in his larynx and laryngomalacia, so he was put on medication and we thickened his feeds with rice. Then we switched from rice to oatmeal because the rice was backing him up. Then we brought down the amount of oatmeal because it was filling him up too much. Then we cut out the oatmeal altogether but he still wasn’t consuming nearly as much as he should be. We brought in the first feeding specialist. He stopped eating when were in the RIC so we put in the NG tube. After a few days his appetite picked up and he was consuming more than he did at home. Then we switched to the NJ since the only time to feed him through the tube was when he was sleeping since his appetite was going great, and they did a real number on Aleck’s nose. Poking and prodding that tiny little nose until he puked up blood on the table in radiology. Even after the tube was placed successfully Aleck was throwing up the feeds and pushing the tube out of his nose regularly. When we came home he threw it up and I pulled it out.
After a few weeks I dragged him to the pediatrician since his nose had been running for almost 6 weeks. He thought it might be because of the damage from the tubes, give it a few more weeks. After a month of being feeding tube free with a nose still full of snot, I called the ENT. Being the middle of December, days away from Christmas, the first appointment I could get was for this past Tuesday. I brought Aleck in and they scoped up his nose. His adnoids are so large they are completely blocking his nose. The poor little man can’t breathe. I laughed. I laughed because they need to come out. I laughed because we are having surgery now on Wednesday to remove his adnoids and maybe even his tonsils. I laughed because it took my family until I was in high school to get mine out and I suffered a continuously sick childhood because of these damn things in my body. I laughed because I was ranting that Aleck’s eating issues had to be related to his breathing a month ago. I ranted to the nursed at the RIC, I ranted to my therapists, I even ranted to another doctor in my pediatrician’s practice who had the nerve to suggest that a hungry kid will eat even if they can’t breathe. That pediatrician doesn’t know my son. I suggested that the next time he return a parent’s phone call he familiarizes himself with that child before dialing. Because Aleck hasn’t eaten well for his entire life.
And you wouldn’t believe the number of people who have directly or inadvertently suggested that it’s my fault that Aleck doesn’t eat well. If another person tells me it’s because he “senses my stress” I will gouge out their eyeballs, I really will. I make sure that eating time is fun and I’ve done this for months on end. We sit in only relaxing positions to take his bottle, looking out the window of his bedroom or watching Sesame street. I let my mind wander, refusing to concentrate on the bottle. I smile at him and stroke his head playing with his hair. I softly tell him he’s a good boy and give him kisses on the cheek. In between gulps we read books or play with puzzles just so I can maybe coax him to take a little more after some activity. I can’t make it anymore relaxed than it is. When he’s in the high chair he’s got toys to play with on his table, we mix up the textures with the purees, we laugh, we have fun, he still doesn’t eat a lot. We try sippy cups instead of bottles, open up the bottles and let him drink them like cups, and when he refuses, we move on to other things. Trust me, feeding time at our house is a stress free environment that I’ve worked very hard to create, but it doesn’t help.
This has to help. This has to work. This surgery has to make a difference. My baby is wasting away. My baby is disappearing before my eyes and to make matters worse my baby has a cold on top of it all. So right now he’s eating almost nothing. It makes me sick to my stomach. It makes me want to cry and bang my head against something really hard like the mantle of my fireplace. We have to get him healthy for Wednesday, we have to get through this surgery right away. Each time Aleck doesn’t drink his bottle or eat his yogurt it’s like pieces of me are being chipped away. Each time he throws up his food it’s like a vacuum sucking the life out of me. I’m running out of me. I just can’t fail at this anymore. I can’t fail at the number two job I have in the world, feeding my child. After this the next step is a surgical feeding tube and right now I don’t see how we can avoid it. Hell, I was practically begging for it right before we left the RIC but nobody was ready to take that drastic step. But mark my words, if he’s not eating better two weeks after his surgery he will get a surgical feeding tube if I have to be the one to surgically put it in him. I can’t lose my child. We’ve worked too hard to go backwards. We’ve come too far to lose him now. This can’t be the way it’s going to go, I refuse to let it get there. So please, say a prayer for us on Wednesday as we go back to Lurie for yet another surgery (his third in life so far) and hope upon hope that our little man gets his appetite really, really, really soon.