The decision to start blogging was one I contemplated for a while. I really wasn’t sure I would have the time to commit to writing and posting. However, I knew it would be the easiest way for me to keep everyone aware and up to speed with Stanton. I see now that I started blogging about our present situation and many of you are just joining our journey. I thought it might be helpful to give you a little background.
Around his tenth day on earth, Stanton suddenly vomited. I was holding him up on my shoulder while attempting to put pumped milk in the freezer. As wet goo dripped down my back, legs and into my shoes I turned to reach for the paper towels, only to realize that paper towels weren’t going to do the trick. My kitchen looked like a scene from the movie Poltergeist. How could something so sweet and tiny create this? Little did we know, this was only the beginning…
Stanton cried and threw up a lot. Well, okay, all day and night. So much so, it was impossible to get out of the house. I think I survived those early days living in a variety of smelly shirts. When I complained to the pediatrician that he was a really difficult baby and was throwing up all the time, the doctor said, “Well all babies throw up”. “I know, I know,” I said, but he seems to be in pain. Of course this just prompted the conversation about what are you eating that could be irritating to the baby? Have you tried formula?
PICC line – I developed an awful infection that was unresponsive to oral antibiotics and had to get a PICC line in order to receive daily IV therapy. This meant Stanton could no longer have my milk. The whole breastfeeding thing wasn’t going well anyway, but I wasn’t ready to stop trying! The PICC line forced me to open the black bag full of free formula samples the hospital sent home with us. Similac sure smells sour when it’s regurgitated. The formula game was one we were terrible at! We tried every variety of Similac, Enfamil and Parent’s Choice. Our pediatrician was very patient as I called every two weeks stating the formula wasn’t working. Stanton is still screaming and vomiting.
Week 10 – Finally! A prescription for reflux (GER). I feel like now we’re getting somewhere. Stanton began taking 7.5 mg of Prevacid each night and we switched him to a formula, Alimentum. Things did seem better. Stanton had longer moments of happy play, but the up all night screaming and constant vomiting didn’t really change. One day I counted 32 pukes. That was a day we didn’t leave the house!
The weeks and months following all begin to run together like we’re living one extra long day. Things don’t improve and once it’s time to introduce solids, things seem worse. Stanton just won’t eat and refuses 95% of meal time attempts. Trying formulas, adding rice cereal to the bottle, increasing medication, starting early intervention….no improvement. This time is also complicated by constant sinus and ear infections, strabismus surgery (eyes), emergency hernia surgery and bilateral ear tube placement. It was so hard to tell if he was crying about his reflux, ear aches or a hernia we didn’t know was there. It was obvious he was crying in pain and we weren’t able to “fix it.”
I insisted on a referral to a specialist at Stanton’s one year appointment. The pediatrician finally agreed and arranged for us to a Gastroenterologist (GI) at the University of South Alabama Children’s Hospital in Mobile, AL. It took 3 months to get an appointment, but once we saw the GI he seemed very thorough. He reminded us of the symptoms of GERD of which Stanton matched ALL:
*frequent regurgitation or vomiting, especially after meals
*choking or wheezing, if the contents of the reflux get into the windpipe and lungs
*wet burps or wet hiccups
*spitting up that continues beyond the first year of life (when it typically stops for most babies)
*irritability or inconsolable crying after eating
*refusal to eat, at all or in limited amounts
*failure to gain weight
The GI also went over some possible complications from GERD:
*breathing problems (if the stomach contents enter the trachea, lungs, or nose)
*redness and irritation in the esophagus, a condition called esophagitis
*bleeding in the esophagus
*scar tissue in the esophagus, which can make it difficult to swallow
The GI explained that any of these complications make eating painful, and interfere with proper nutrition. This could explain why Stanton is not eating. We left that appointment with a prescription for a new high calorie milk called Vital Jr., scheduled invasive procedures and hope! For the first time we felt like we were going to get to the bottom of this and find a treatment for Stanton.
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