Mothering and Life in General
GERD (Silent) Part 1
This is a long story, so I will break it up in several different parts and link them together for your reading enjoyment.
Our Daughter has a term known as Silent GERD or Laryngopahryngeal Reflux (LPR). I have spent months on the internet after her being diagnosed trying to find ways to stay with the WHO recommendations and to treat Our Daughter’s pain. I thought I should write about our experience here.
Names: Gastroesophageal Reflux Disease, GERD, Acid Reflux, Heart Burn, Reflux, Laryngopahryngeal Reflux (LPR) or Silent GERD.
Gastroesophageal Reflux Disease: A condition where the stomach contents is regurated from the stomach past the Lower Esophageal Sphincter (LES), and up to the Esophagus causing extreme pain in the stomach/chest area.
Laryngopahryngeal Reflux: A condition where both the LES and the Upper Esophageal Sphincter (UES) fail, causing the stomach contents to go up to the throat either pooling there, or making it to the tubes to your nose or ears. Pain is experienced not only in the esophagus, but in the throat as well. Laryngopahryngeal Reflux (LPR) is commonly known as Silent GERD because of the symptoms can be very similar to GERD, but often times there are no symptoms besides pain.
K2’s Story/What It Can Look Like: At the third day of life the NICU nurses informed me K2 found her cry. At first I was horrified, how can a baby literally scream/shriek that much? I was hoping that when she arrived home she would lose it again. Eleven days later there was a change in her cries, they were louder. When I close my eyes I can still remember the piercing sound of her pain.
For those who never experienced this, I often described her shrieks as: boil water-add baby. Her face would wrinkle, her mouth open fully, her tongue waving in the air as her face went purpley-red, she would stiffen up, yet arch her neck and body, and SCREAM! Often times she would do this as we nursed.
We could not rock her, put her in a stroller, lay her flat, she would freak out in minutes of being nursed, she couldn’t bare cradle holds, you could not bounce her, she only projectile vomited three times at the most. She sounded like she was gurgling quite often and curds were in her mouth constantly. Her dirty diaper would leave her in rashes if not changed at that moment. Sleep time was the worst. She would only sleep on my chest, NO WHERE ELSE, period. End of story. She would nurse constantly, and not just the newborn or growth spurt, kind of nurse either, think more. I was literally only in a sitting or laying position. To have a shower, the thought was laughable. She would cough and hiccup a lot, and for a breastfeed baby, she had many ear and eye infections before her 6 months age. I would have to nurse her while I was standing with her parallel to me, which now I know as the Australian Hold (Fig. 5, but standing). And car seats… Ya, that was a joke. She’d scream the entire time. To the point her father could not drive the car anymore with her in it. All I have to say now was I want to kiss the person who invented the wrap! Yet, the scariest symptom was her apnea.
We went to seven different doctors total, but many more than seven appointments. With five Doctors, I was told: I hold her too much, I don’t burp her enough and her stomach can be a drum from all the air that is in it, All babies cry, I think too much of her cries, she is manipulating you, I am spoiling her, I am too attached, It’s my milk or my diet, I am not making enough and starving her. At the end of every appointment it never failed I heard “She’s COLIC”.
I remember flipping out on the last doctor who told me that. I remember saying something like “Doctors like you, are the reason people shake their babies!” I even called Telehealth, a number where you can reach registered nurses. Again it was colic. I remember freaking on her too. I just could not understand how ‘colic’ can just come and go. Besides she was passing wind the entire time so if it was gas would you NOT think she would stop? In my heart I knew there was something else. I went to an LC who said I had over active let down, and to feed from one breast, every time she nursed, for four hours then switch to the other, repeat. Again, as we were leaving I heard, “We have a colic one on our hands”. I never went back.
Finally my beloved family doctor came from his vacation and I saw him and demanded that we see a specialist. What a nice welcome to the office he got that day. Any cry like that is because of pain and not from any of the above, and I wanted answers and NOW. I hold no shame from the things I said or did either.
When K2 was 5.5 months we went to a Pediatrician who I had a love-hate relationship with. Why the hate? You’ll learn as the story goes on, but I loved that she listened, I loved that the first questions was not questions at all. Her big brown eyes looking up at me, she said “Tell me about your days and nights”, followed by “How do you parent and what are your tools?” I loved when she said “You know your child, what do you think is wrong?” Tearing up, I quietly said “She’s in pain, and I can’t make it go away, nor do I know how.”
Nobody in the medical field heard our Daughter’s cries as communication until that day. She laid our baby on the table to examine and opened her mouth (which none of the other doctors did). She did not have to do much and she said “Oh, Mommy you are right, your baby is in a lot of pain”. K2 at 5.5 months had Ulcers in her throat and because she did not vomit more than 3 times, there was adequate diaper output and still gaining weight, things where over looked. Which also meant, the stuff that was burning coming up, she was swallowing and it was burning going down.
5.5 months of pain, 5.5 months of my Spouse and I in fights constantly, 5.5 months of no sleep for the family, even her older sister did not want to come over, and 5.5 months of carrying her afraid that my carpal tunneled hands would give out, while she screamed. 5.5 months and no one but the pediatrician listened.
Story to continue here.