Feeling helpless 

From birth when Ethan’s feeding would be increased every few days, he would have one little spit up here and there never being more than a few milliliters each time. We were always told it was thought to be from the increase in food and his body adjusting, reflux or irritation from the mixed formulas added to my breast milk. It was so frustrating when he would throw up in the NICU because of his tube feeding. We felt like we had no control over how much he was fed due to the nutritionist wanting him to have a certain intact of calories a day to keep gaining weight. But the more they added food the more he’d throw up. Even with his feeding times going over a two hour period. Seeing your 3 lb. baby forced to eat so much and throw it up was so frustrating. 

1 month old: Ethan’s emesis (vomit) was getting worse and more in volume. Considering that I was breastfeeding, I had to go on a dairy and soy free diet. The thought was Ethan’s body wasn’t digesting dairy and soy products for now and could grow out of the intolerance later in life. It was a hard change and even when I thought I was doing good, I’d always find some dairy or soy hidden in what I was eating. After some time, I got my meals figured out and I was down to the bare minimum of what I liked and would eat. 

2 months old: before leaving the NICU we tried multiple formulas added to Ethan’s diet. I wasn’t producing enough milk and they wanted to add extra calories for him to gain more weight. The original one he was on and could tolerate wasn’t a type we could continue once we were home. After trying 4 different kinds and failing, we were sent to a dietician when we were discharged. Thank Heaven for her. Our dietician is amazing and sweet. She was the best on how to describe what each formula did and how his body was reacting to them. She was so helpful and explained everything just the way I needed her to for being a new mama to a preemie with eating issues. Erin was a blessing sent from above. It was becoming exhausting after a while. Constantly worried about your little one losing weight and worried that someone might think it’s my fault he isn’t gaining or growing. Plus changing formulas and recipes almost weekly to see what worked sucked because it was getting hard to keep up with the new formula recipes, especially when someone would be watch Ethan and they have to be updated as well. 

     3 month old: We were doing weekly visits to the dietician in Tacoma. Was not a big fan of going back and reliving the two months he was in the NICU. There was no positive impact to Ethan’s emesis with my diet change. Again, we switched multiple formulas each one just as bad as the last. Until our dietician suggested we get on the easiest already broken down formulas out there and expensive to boot. The emesis was getting better, for a while. We finally got the formula down and dairy/soy free but the dang throwing up was still around.

4.5 months old: There was still no real change in the amount of emesis and my poor baby started projectile vomiting up reddish brown colored mucus. It was the most terrifying thing I’ve seen him do. Over a weekend visit to Spokane, he got worse and the day we came home he wouldn’t keep anything down. So we went for an ER visit. Nothing is scarier than having to bring your preemie baby back to the hospital. 5 hours of sitting in a room listening to my baby cry trying to rock him to sleep because he was hungry and having to wait for an ultrasound room to open up. With the ultrasound coming back normal and no surgery was required, we were finally able to feed him Pedialyte. Poor sweetie downed it as fast as he could, along with throwing half of it up. The doctors findings: Acid reflux disease and was prescribed Ranitidine. Both Ethan’s pediatrician and dietitian stated he could have reflux in his previous appointments but never diagnosed him. I don’t get why we had to go to the ER for Ethan to get diagnosed for reflux and get medicine to help it. 

5 months old: the medicine that the ER doctor prescribed stopped working and the reddish brown colored mucus vomit was getting worse. Ethan’s pediatrician prescribed a secondary medicine, Metoclopramide, on top of the one he was already taking and put in a referral for a GI consult. After giving Ethan his first dose, with in minutes he threw up his medicine and his food. When I read the warning signs for the new medicine I reconsidered giving it to him. The first warning stated this medicine was not to be given to infants. I was furious! 

A few days later, I met with a PT and OT doctor at Mary Bridge in Tacoma. The PT doctor was the first one who took the time to describe to me what was happening to Ethan with his reflux and the signs that show when his reflux was hurting him. I was so grateful for her patience and wanting to teach me how to handle taking care of Ethan while he was hurting. Then when I talked with the OT doctor, I showed her the medicines Ethan was on, the look on her face when I mentioned the names was, “WTF! Why?” Right then and there, I knew it was a good thing for me to stop giving it to him and ask for a second opinion. Now he’s on Omeprazole and it’s a miracle! Now Ethan’s back to his normal little spit ups here and there. No more projectile vomiting. No more reddish brown colored mucus vomit. Just a happy drooly baby. This mama can finally relax and be thankful for the people in her life that have done all they can to help us. It’s heartbreaking knowing your baby is hurting and there isn’t anything you can do to help them.

2 thoughts on “Feeling helpless 

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  1. Oh my word, what a drawn-out experience! ((hugs)) I’m so glad you guys got it figured out and now have a med that’s helping. 🙂 I’ve had to do that, too (not give medicine to a child)…one cream that was prescribed to my daughter when she was seven was known to cause skin cancer (which I found out by reading the warning pamphlet)!! All she needed, it turned out, was OTC anti-fungal cream. *grr* So glad I didn’t trust the dermatologist!

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    1. It had been a long 6 months that’s for sure. It’s frustrating when doctors see what’s going on and know but don’t do anything. I’m sorry you had to go through that with your daughter. I get medicine has it’s good side and bad side. But if something isn’t meant for a baby or causes cancer. Don’t prescribe it. We all know there are multiple ways something can be treated.

      Liked by 1 person

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