Stephen's Story (Part 2)

My poor baby had already experienced so much trauma and pain up until now with eating that he began to refuse to eat at all some times. I would do everything I could to get him to eat, and he still would throw an absolute fit. I didn’t want to force him and make things worse, but sometimes I would have to force him to eat. Even then I could only get a few ounces down him at a time. To make matters worse, I had family members and “friends” make me feel crazy when I’d tell them that he wouldn’t eat…it was always “he’s a baby, he’ll eat when he’s hungry.” But nobody understood, and I didn’t know how to explain.

I researched constantly online, and I joined a few Mommy groups for support and advice. I could not believe how many babies out there had the same thing as Stephen. It was unbelievable. In one group alone, called “Food and Bottle Refusal,” there were 3,000 members! I was stunned. It was sad, but also good to know that my child wasn’t the only one who hated eating. Several people who had babies with GERD (Gastro-Esophageal Reflux Disease) like Stephen said to try “dream feeding.” That is when you feed a baby while they’re sleeping so they don’t really know they are eating and can suck the bottle without realizing it. This actually worked quite well, but it was exhausting feeding him while he slept at night rather than during the day. For a little while, despite the utter exhaustion from constantly trying to feed Stephen all night long, it seemed like soy formula with GOBS of rice cereal worked. I was a bit more hopeful. He was still throwing up but not nearly as much.

However, at this point things turned even worse. Along with refusing to eat most of the time, and throwing up half of what he ate, Stephen started having breathing episodes while choking. It was like watching someone suffocate my child. If he didn’t projectile vomit, the milk/reflux would go up through his nasal cavity and keep him from being able to breathe. He would choke and gag and struggle to get it out. It absolutely terrified me, and I called the Pediatrician crying hysterically the one day when he started turning purple-bluish-red. The main fear was him breathing in the reflux once it shot up into his nasal cavity. If he aspirated into his lungs, he could either get severe pneumonia, or he could “drown.”

The Pediatrician was truly worried at this point, particularly about choking as well as slow weight gain, and he referred us to a GI specialist. I had high hopes that we would finally get some answers. At first we were really hopeful as the new doctor seemed to want to help. Then, I called him one day after Stephen choked and asked him what I should do; this doctor was not very nice. He said I was overly anxious and the only problem with my son was that I needed to calm down (as if my son choking and vomiting was my fault). He put him on another 2 different medicines, as well as the best infant formula available (you can only get it by prescription). The doctor said to take out the rice cereal, which obviously did not work. So I went with my Mommy intuition and added it back in. It seemed to take several days before he got used to the formula, but once he did, it was a lot better. He was not vomiting near as much as he had before.

Again, as usual while riding on the Reflux-coaster, things got bad again. The choking episodes continued, but more so at night. We bought an inclined infant positioner, and he started sleeping in that in our bed so I could hear him at night if he started choking/stopped breathing. I would lie next to him, listening to the reflux coming up into his throat and him struggling to swallow it back down. I couldn’t sleep for fear of him drowning in his reflux. I would lay in bed at night, praying to God he would be okay if I went to sleep. It was awful.

Then, even with the tablespoons of rice cereal, the vomiting started again too. I was an absolute wreck because there was nothing else my child could eat. I called the GI and again, got the cold shoulder. He said to me on the phone, and I quote: “If you’d like me to take your son from you for 3 months and give him back to you when he’s better, I’d be glad to.” :( I was so upset I just hung up the phone and bawled my eyes out.

During this time, there were many days and nights that I would I sit and wonder what I did wrong, if I hurt Stephen while he was in my womb, or if something was wrong with my body to make him sick as a baby, or if I could have prevented it somehow. I wondered if Stephen was hurting because I was being punished by God for bad things I’d done in the past. I wondered if I was a good enough Christian and that maybe if I was better, Satan would leave Stephen alone. I thought maybe if I was a better Mom too that I would know how to help my son, and that I would be able to get him to eat or keep him from throwing up or choking. I felt like everything was somehow my fault. So I just kept praying God would heal Stephen and it would all end, that I’d wake up from this “bad dream,” and that Stephen could be like all the other babies out there who loved to eat, gained weight, and were happy.

(To be continued...)


Dana-from chaos to Grace said...

Oh sweetie....first of all....it's NOT your fault. God is NOT punishing you, and you are a perfectly GOOD mother! A bad mother would NOT have gone to these lengths for their baby.

Breastfeeding is a MAGICAL experience, but I'm here to tell you, sometimes, it just doesn't work! I was blessed with BOTH of my boys to have had someone personally help me and champion me on during those horrible weeks of such pain that I CRIED during every feeding! If I hadn't had her there and the LL ladies help me, I would have GLADLY quit! It is hard sometimes!

BUT, we do the very best that we can do. We cannot expect more and neither can anyone else.

And, I happen to babysit a 6 month little boy that has the SAME GERD that you are describing! It is TERRIBLE! He is on Alimentum (?) and some kind of medication I am supposed to dissolve in water and squirt into his mouth. It's helped a very TINY bit. Sometimes I change MY clothes 3 times just while I have him! I bathe him almost daily because he smells so bad from all the spitting. :( I feel so terribly for him.

I will watch for part III, but in the meantime, now that I am praying for you guys, and that being a mother is the wonderful, most scariest, job you will ever hate and love at the same time! LOL People don't tell you the ugly, hard realities of motherhood when you are cute and pregnant. Sometimes it's dreadful.

And then....those beautiful babies smile at you, and you forget all about the bad times. It's the mysteries of parenthood!

HIS daughter said...

Oh my goodness. I am praying so very hard. I am so sorry that he has had to go through all of this! I am praying so hard for you all!