We knew something wasn’t right with Logan when he was still in the NICU.
I was pumping and feeding him expressed breast milk by bottle, since he was so small and weak – he had problems nursing. My husband and I noticed that he seemed to be uncomfortable when he was eating. We thought it was gas…or maybe he was just a squirmy baby. It would not turn out to be that simple.
We started giving him Colic drops, Oval, gripe water, anything that might help any discomfort he was in. It didn’t help.
When he was drinking from his bottle, his tiny little body would arch backwards with such force that we could hardly hold onto him. Sometimes he would scream. It would go on for hours. Never have I been through anything so emotionally exhausting as watching your newborn in pain, and not knowing why or how to stop it. I cried…a lot.
He used to make these cute little grunts when he was sleeping in the crib or bassinet. We called him “our little goat”, since that’s what he sounded like. Later, when I learned that he made those sounds when he was in pain, I felt unbelievable guilt. It crushed me.
Carlos and I searched the internet for any wisdom that might help our littlest boy. When we came across the list of symptoms for GERD, my heart sank. This sounded like Logan. Too much like Logan.
GERD stands for Gastro-Esophageal Reflux disease. Our friends’ son had GERD, and we remembered how hard it was on their whole family. We started to pray for Colic.
I brought him to our family doctor as soon as she could see us. I told her Logan’s symptoms and my suspicions. She said that it could be GERD, or it could be a milk allergy/intolerance. She suggested that we cut milk products out of my diet, and switch him to soy formula for the couple of feeds a day when the breast milk supply had run out. In the meantime, she got us an appointment for Logan to go for a milk scan at CHEO – the Children’s Hospital of Eastern Ontario. Luckily, we live in a city with a children’s hospital.
The soy formula helped a bit. But he was still in so much pain. We counted the days…no…hours…till Logan’s test. When it finally came, it was bittersweet. We were happy that we may finally find out what our son was dealing with. But we also knew that this test was not going to be fun for any of us.
Being at CHEO was stressful. It was hard to see all those children. Some not so sick, some much worse off than Logan. Logan was dressed in a pink gown (how humiliating!), and was fed a bottle of formula containing a radioactive dye. Then he was strapped to a table and a huge imaging machine was lowered down over him. And there he laid for an hour. A horrific hour of screaming, tears and torment. The only contact I could have with him was reaching in from the side. It was awful.
We got the results the next day. Our doctor called us as soon as she got them. It was GERD. Again, my heart sank. He was also diagnosed with something called Sandifer’s Syydrome, which is a neurological response to the GERD. This explained the arching of his back while eating. A prescription for Zantac was waiting for us at the pharmacy. We hoped that this would make everything better.
It took about 10 day for the Zantac to finally make a noticable difference. And what a difference it was! It was like night and day. But it didn’t take all of the pain away. Zantac is very weight sensitive, so once a week we would weigh him on a baby scale that we had purchased and calculate his new dose using a formula given to us by our doctor. And since he’s what is called a “comfort eater” (he eats to try to sooth the pain), he gained weight rapidly, requiring the Zantac to be upped every 10-14 days.
After being on the Zantac for a couple of months the “episodes”, as the hospital called them, came back with a vengeance. Back to the doctor we went. This time Prevacid was added to his daily routine. We were hoping to avoid this, since there have not been many studies on Prevacid in infants. Doctor’s don’t like giving it to children under a year or two of age. But Logan needed it.
The first Prevacid we got was in capsule form. So I had to open the capsule and count the little beads to get the correct dose. Fun. Not!
It was like the sun came out. We still have to treat him differently than healthy babies (can’t lie down right after eating, etc.), and he is still on the soy formula (couldn’t keep up the pumping, haven’t tried him on milk formula yet, milk allergy/intolerance is common in GERD babies). But in the last couple of months our little boy’s real personality has come out. It’s amazing!
It will be a while until we find out the extent of Logan’s problem. Most children grow out of it by around 18 months, but some don’t. It depends on what is causing the GERD. Either the flap at the bottom of his esophagus that closes over the top of his stomach is under-developed and still developing, it is stuck open, or it isn’t there at all. This will be determined at some point with an ultrasound. If it is still developing, it’s just a waiting game. Otherwise there may be surgery in his future. Hopefully not.
Until then, we will enjoy our little boy and hope for the best. Atleast he is more comfortable now, and hopefully it will only get better!