Frazzled!

This past week has been really rough. Jill’s eating has decreased by 710 ml. In the last 12 weeks she has only had 2 weeks where her eating consumption has decreased. Once it decreased by 135 ml and the other time it went down 120 ml. While her feeding times have never really been easy, this past week they have been miserable.



Part of the problem was not having enough acid reflux medicine. The pediatrician originally increased it for two weeks then last week she wrote a new prescription. It was supposed to be for the same increased amount. Bryan picked up the medicine. I always carefully compare the old bottle with the new bottle (we have to get refills monthly because the medicine loses its potency). Immediately, I noticed several problems…not only was the dosage incorrect, but the concentration of the medicine was different. So I had to call the doctor and pharmacist (apparently the doctor was confused on the concentration of medicine she was receiving…I guess it was good the error was for a smaller dosage of medicine). Thankfully, we didn’t have to throw out a $40 bottle of medicine. They refigured the dosage, while it was an increase from before it was less than she was receiving for 2 weeks. So she started having all sorts of reflux problems. When she first came home from the hospital, I thought her breathing would be the most nerve racking thing. I imagined myself watching her breathe in the middle of the night. Instead waking up to her choking from reflux problems is what is more disturbing. For 3 nights in a row, I didn’t get much sleep past 3am (that is after going to bed between 11pm-midnight). Since then I have been having Jill sleep in her bouncy chair at night because her inclined bed just didn’t seem sufficient. Well since the reflux problem has been so bad, I’ve had to call the doctor and pharmacist again trying to figure out what would be a safe dosage of medicine for her.


To complicate matters worse this past week we decided to start feeding Jill straight formula (versus the breast milk/formula combination in each bottle). Well apparently, she hates it. The formula is super concentrated to give her extra calories. This gives her constipation. So on top of being normally gassy (it feels like we give her more gas drops than formula) she is in pain from not being able to poop. The solution: Karo syrup or apple juice. Well since she has problems drinking milk for a number of reasons (for example, her tongue doesn’t always allow her to swallow/suck properly) she isn’t overly excited to drink these other things. And I’m not overly excited to try the baby lax suppository method.


I think we are in need of a new formula. The doctor has been resistant about changing her formula because she is on special formula for premature babies or babies with low birth weight. On Monday, I’m probably going to go to the doctor again and plead with her to try something else. Even if she doesn’t approve a change, I’m at the point where I think I will just start trying some other formulas on my own. Seriously, we are going crazy. Jill cries just looking at the bottle, and I’m all frazzled that she won’t eat. It really doesn’t matter how much a new formula costs. If it is some magic formula that costs $50 a can and she eats it, I’m willing to not have Christmas presents, family vacations, or whatever. I just want her to eat.


At the NICU follow-up appointment we had a few weeks ago the doctor told us it is time to change our mindset from having a critically ill infant to a baby with a few issues. In other words, RELAX. I’ll relax when Jill can finish a bottle without screaming from pain.