Survival Mode

I haven’t been posting lately because I haven’t had the time or energy. I’ll give a quick point form update.
* Baby L is steadily following the 10th percentile growth curve for weight and the 75th for length. We have finally been told that she is healthy and we don’t need to worry about her growth if she follows the curve.
* Before being told she is healthy, the concern expressed by the doctors and nurses had me panicking that L was failure to thrive. I did far too much googling, looking for answers and solutions. I became convinced she had painful reflux, which was causing her to scream while feeding and refuse to drink much. The doctor put her on Zantac.
* I became so distraught that I took her to the emergency room at the children’s hospital so I could get a pediatrician’s opinion. The ped was more concerned about my anxiety level than L’s weight or feeding. I had become concerned as well because I couldn’t sleep even when L was asleep. I kept thinking of new things to look up, to try to figure out what was wrong and how to help. I also lost my appetite. So I ended up going on a higher dose of my medication.
* L was referred to a pediatrician for follow up, He changed her from Zantac to Losec (a proton pump inhibitor). So far I haven’t seen a change but it’s only been a few days. He also gave us a sample of PurAmino A+, an amino acid based formula, since L is already on Alimentum. Turns out a can of PurAmino would cost us $75 and only last about 3 days. The doctor said to try it if the meds aren’t working. He said her fussiness could be due to reflux, a cow’s milk protein allergy, or colic.
* I previously rejected the idea of colic because the duration and frequency of her fussing didn’t fit the definition, but she has recently been much fussier and it does follow a pattern.
* I don’t think it’s an allergy because she rarely fusses during bottles now and is very pleasant through the night and morning. I wouldn’t think an allergy would be selective about the time of day.
* I am also doubting that L has painful reflux now. I think she may be more of a happy spitter.
* the doctor said that L is healthy, but fussy and regardless of which of the 3 suspected conditions she has, she’ll outgrow them even if she isn’t treated, it would just make for some long months if we don’t treat her.
* I think being overtired contributed to L’s fussiness. She resists naps and I was trying to build good sleep habits but now I plan to do what works (swing, car, stroller . . . anything with movement).
* Today was a really good day and I hope we continue to have many more. I want to stop merely surviving and start truly living.
* Everyone comments on how alert she is.
* She is very strong in my opinion.
* She is also very curious.
* Making her smile is the most rewarding thing and I love our cooing conversations.

This post wasn’t really thought out beforehand, so I am sorry if it reads strangely.

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3 thoughts on “Survival Mode

  1. My heart goes out to you! E had reflux and it was so stressful knowing that he was in pain and worrying about his well being. If you haven’t checked it out already, I highly recommend refluxrebels.com. They have a ton of great resources, including quizzes that help you determine if your child has reflux and/or a milk/soy sensitivity. You’re doing a great job, mama!

  2. I have 8 week old twins both preemies who were born at 34 weeks , i breastfed for the first two weeks untill i lost my milk supply :-( .a week after they came home from the nicu after only being there for two weeks i had to start formula. First we tried emfamil a+ after 3 days both my babies started to spit up with every feed becoming more in duration and forcefullness after a day of that i decided to bring them to the hospital where they were both admitted, doctor came to the conclusion that they have acid reflux and cows milk protien allergythen we were put on nutramigen a+ rtf we and zantac aswell as domperidone. 3 weeks later still spitting up but less amount on every feed we were sent home, we have been home for two weeks now and still on nutramigen well the amount of spit ups has now become more like vomoting again in the last two days with every feed and every little amount being spit up. Doctor told me i should try puramino a+ now . Which i have to have my pharmacy order it and i have no coverage and i have to battle this times two. Idk what to do i cant even comprehend how much its gonna cost and even where i will get that money being that im a single mother of 4 :-(

    • I am so sorry to hear about your struggles. I can empathize with the stress you’re experiencing. Puramino A+ is absurdly expensive. It feels so wrong that it can cost that much to meet your children’s most basic needs. I don’t know what country you live in or if you’ve already looked into this, but I kept reading about being in the US getting Puramino A+ covered as a medical supply and they had to contact the medical supply company directly. I don’t know all the details as it didn’t apply to us, but hopefully it can help you.

      Over time, I found that my little girl continued to spit up a lot but she turned into a “happy spitter” and no longer fought her bottle. Now, at 6 months, her reflux doesn’t appear to cause any pain. She continues to drink Alimentum because she has never taken to regular formula when we’ve tried to switch. I hope that your little ones outgrow it quickly!

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