Ellington

by Katie Sternberg
(Unionville, Missouri)

I am the mother of a 3 month old baby boy who suffered from severe GERD.

From the time I was in my third trimester I noticed he would have hiccups multiple times throughout the day.

After he was born I began noticing that he sounded like something was in the back of his throat and he was unable to fully swallow.

His third day of life he had an episode after supplementing with formula due to my milk not coming in where he was inconsolable.

He was arched and in obvious pain to the point that the nurse contacted the doctor and they did blood work and a chest X-ray, all of which showed nothing.

The second night we were home was the first time Ellington choked to the point of turning blue due to reflux, it was one of the most terrifying experiences of my life and I am a long time ER nurse.

We continued with frequent hiccups, arching in pain, vomiting out of his nose, horrible gas, began having slow weight gain and often he would wake up with dried vomit all over his face.

I was scared every time I put him to sleep despite using an owlet monitor and having a co-sleeper bassinet right next to me. We slept maybe 10 inches from face to face (I always slept on my left to ensure I was facing him).

On his 1 month birthday we were driving from a friends house, I had fed him less than an ounce after waking him so he could stand being in the car without eating for a bit, kept him upright for about 15 minutes, put him in his seat and left the subdivision. Right as we were about to pull onto the highway he began choking. He turned blue and choked so hard he had petechiae covering his tiny head and face.

We decided to take him to Children's Mercy ER despite my nagging feeling that we would be blown off. We get there, it takes a long time for them to take us back because my husband simply told them he had reflux. We ended up having tests for hours, ultrasounds, blood work and 3 tries for an IV. The ER doctor then confirmed my fear; he was discharging us without any answers or medication.

Ellington then had 1 more episode as the nurse was coming in to remove his IV and give us discharge information, she fought for us. We were admitted for two days, the hospital list pediatrician actually told me I made the right call seeking help.

We started him on omeprazole 2.2mg daily, this seemed to help a little, but not nearly enough so I started giving it twice daily. He gagged on the medication and against recommendations I put it in his bottle knowing it wasn't going to work as well.

In the meantime I had found these Facebook groups talking about TCmax and Marci dosing so I began doing some research. I spoke with Erin who has been a life saver for me and finally made the call to order TCmax and began compounding his medication at home. I am now a nurse practitioner and most guidelines do not dose effectively.

For those who have had providers not meet their needs, I think it's lack of education,not lack of compassion. These people have never had to be terrified that their baby wouldn't survive the night because they would succumb to the 2nd leading cause of SIDS. A dear friend of mine experienced all of our worst fear. She tried to get help and due to lack of knowledge and understanding her daughter wasn't treated effectively and died.

For anyone having any doubts I can promise you that this was one of the best decisions I have made for my child and family. We are still making adjustments but are working towards being pain free with minimal symptoms.