I throw the bottle onto the floor in frustration. “Why do you not want to eat?” “I don’t understand…” I never thought Malachi would be the preemie that had feeding issues. Malachi always loved to eat. Even with his severe reflux; Malachi would eat until he would vomit, and then eat again. He loved his bottle. He was gaining weight. He was happy. Who knew that a virus could have such lasting effects?

Three weeks ago Malachi suffered an awful GI bug. He wouldn’t eat, he had watery diarrhea every hour or two, and he lost weight. At his lowest he weighed a mere 12 lb 14 oz. We have tried so many things to get our sweet baby to eat…distraction techniques, using different positions, and different bottles…I even resorted to climbing in his crib and letting him watch his mobile while he ate. He pretty much was to the point where he would only eat in his sleep. I sobbed in frustration. Most babies love to eat. How can something so satisfying bring my baby so much pain? We offer him the bottle- he cries and turns his head. The GI doctor brings up the word “tube feeding”…but I cringe at the thought. I don’t want that for my child. I want his life to be as “normal” as possible. “This is just a phase” I tell myself.

We try everything…different formulas, different bottles, different nipple sizes…but nothing seems to be working. After weeks of diarrhea, stool samples, blood work, OT evaluations, and multiple trips to Duke….Malachi finally has been diagnosed with having a food aversion. In other words…he does not want to eat because he now associates eating with pain. He only gained 3 oz this week, which is not enough to continue good growth and development. We are starting treatment by beginning the medication Reglan (to increase bowel motility and stomach emptying) and increasing his reflux medication. We have also changed his formula (trying to change his eating experience). We will be starting outpatient therapy at Duke with a feeding team to try to help Malachi overcome these feeding issues. Feeding issues are VERY common among the micro preemie population. Many preemies often have oral aversions because they required breathing tubes and feeding tubes to survive- which are extremely uncomfortable. Malachi thankfully does not have an oral aversion (he loves putting toys in his mouth and sucking his pacifier or fingers)…he has an aversion to eating. There is a critical time in development between the 3-4 month age in babies where eating is no longer reflexive, and instead children choose to eat. In other words, they eat because they desire to, and not because they have a primitive reflex to suck.

Unfortunately, this is the time when Malachi developed his virus-causing him to associate eating with unpleasant feelings. Now, every time we try to give him the bottle he cries and refuses to drink. Sometimes I spend an hour just trying to get him to eat 3 ounces. Also-he is no longer receiving breastmilk, which not only helped him gain weight, but was much more gentle on his tummy. Unfortunately, with the stress of losing Michael and keeping up with Malachi’s needs, my production of milk quickly dwindled. The doctors at Duke are leaning towards Malachi getting a gastric tube placed to help supplement his calories while he is learning to feed. Basically, he would eat what he wants, and then we would tube feed the rest…all the long while he is receiving therapy from a feeding specialist.

When the doctors first brought up the word gastric tube, I fell apart. I thought…”great, another device that screams ‘my child is different’ …another battle to overcome…another surgery.” But I also want what is best for my child. He needs the nutrition, and I know he is tired of me fighting him to eat. I left the hospital feeling so defeated. I never wanted this for my child. I don’t mind learning to care for a gastric tube, or traveling to Duke for therapy. I can handle it. I’m thinking about the future of Malachi. You know…when I was in the NICU I had a hard time seeing past the day ahead of me. We were fighting for the very life of Malachi, and it was hard to see what a few years down the road would look like- let alone a few days. It was minute by minute. ABG result and vent change to ABG result and vent change. It was surviving surgery, and not developing an infection. It was looking through glass walls and wanting nothing more than my baby to make it to the next day. Today, things are different. I have time to think more about the future- and to be honest-it’s frightening. The unknowns. The questions.

In the NICU you become numb to disappointing news. I remember the day the doctors told me that Malachi’s brain scan was now showing that he had PVL, and how I didn’t even shed a tear. Was I upset? Yes…PVL increases the likelihood for developmental and cognitive delays; but, I was so numb from all the discouraging news I heard on a daily basis, from the passing of Michael, and the emotions I felt as I dreaded Malachi’s upcoming brain surgery- that it didn’t have a great impact on the way I felt. Malachi was alive- and in that moment-that was enough. I tell you all this to say, I almost feel like disappointing news is harder to wrap your head around when you leave the NICU setting. Hearing that my son may need a G-tube hit me like a ton of bricks. It brought back fear and raw emotions. I felt like crying out to God “hasn’t Malachi been through enough?” But then I stopped myself. How selfish of me. God saved Malachi. Malachi is a gift…he is vibrant, and happy. He knows me. He is goofy, joyful, and lights up a room. God has brought him through so much already, and I know we will overcome this too. This is just another page to our story.

Once again, we are reminded that we cannot do this without the strength that comes from Jesus Christ our Lord and Savior. We just cannot make it alone. Also, I am so thankful for the micro preemie mamas I have meet along the way- with their encouraging words and super hero like strength. Yvonne, Lindsey, Leah…just to name a few…you rock! You can’t survive this micro preemie world without faith and fellow micro preemie mama friends who ‘get it’…who truly understand.

So where do we go from here? We pray. Jake and I have gone off to the lake for a few days. No TV, no worries from the world-just time away to spend with our precious boy. Please continue to pray with us for Malachi. Pray that we will make the right decision as his parents about his feeding needs. Continue to pray for his development, brain growth, and muscle tone. I will try to post again soon to let you know how therapy is going, and what Malachi has been up to these days (besides refusing to eat.) He is still such a happy boy, despite all he goes through. I know I tell you all the time- but you are my hero Malachi!

2 Corinthians 4:8 “We are hard pressed on every side; but not crushed; perplexed, but not in despair…”