r e f l u x is for the birds

We’ve gotten a couple emails recently asking about reflux & updates on how Nora is doing with hers. It’s been a rough road for us, and unfortunately it’s one that has not come to an end yet. There have been a lot of ups & downs with reflux and seeing your baby in pain & not being able to do anything about it is just the worst feeling as a mother. I write this as a place to let you all know that if you feel the same way- you’re not alone!

Nora was ‘diagnosed’ with silent reflux when she was a mere 6.5 weeks old. The weeks leading up to that diagnosis were terrible. I knew something was not right, but wasn’t sure what. She didn’t have all of the ‘normal signs’ of reflux, so it really wasn’t even on my radar.

SYMPTOMS

f u s s y ||

This was a huge bummer. Nora was a fussy baby from the start. As a mother-baby nurse, I knew that newborns can be fussy, especially before mama’s milk comes in- so this didn’t seem like a big deal at first. Then my milk came in. . . and she was still fussy. I assumed it was because I possibly had too much milk, or her latch wasn’t as good as I thought. So I saw a lactation consultant to check her latch- it was perfect. I didn’t want something to be wrong with her latch, but at the same time it would have possibly given me an answer & a “fix” so I was a little disappointed. We got back in the car and she screamed the entire way home- which was the norm for her. Any time I set her down she would arch her back and scream.

g a s s y ||

Nora was extremely gassy once my milk came in. I could tell it made her uncomfortable and it smelled way worse than you would ever assume for a baby. Her stools were all normal, but this was just out of the ordinary. Of course, I started talking with other moms and doing some research of my own to look at other causes. We went through the dairy intolerance question, tongue tie, oversupply issues, etc. Nothing seemed to provide the answers. May she was just a fussy baby? Maybe this was her personality?

a r c h i n g ||

Nora arched her back every time she was laid flat on her back. She would arch her back when she was nursing, when she was in the baby swing, when she was being held- and it was usually accompanied by fussiness/ screaming. It got to the point of being annoying because it happened so often & I constantly shamed myself for not knowing how to help her.

no  s l e e p ||

It’s been 6 months and I still don’t sleep. I know at first this is completely normal- yes, I know this. Nora would wake about every 1-1.5 hours for the first 6 weeks. She didn’t necessarily want to nurse- just would wake up in pain. She slept in the bassinet next to our bed for about 5 weeks. We moved her to her own nursery/crib at about 7 weeks (after we explained all the above issues to our pediatrician) & it absolutely helped- but not completely. Once we started Nora on Zantac (~6.5 weeks) she would sleep longer stretches- sometimes even 6+ hours! But wait, there’s more… read on.

PEDIATRICIAN VISIT #1

We explained everything going on to our pediatrician & he explained that this could be a bout of silent reflux. This meant that she may not have the classic ‘spitting up’ symptoms, but that the acid from her stomach could still creep up into her esophagus and cause a lot of pain for her. He mentioned that we could try Zantac and see how it went & go from there. My husband and I decided that this sounded like the best option at this point, since we had tried so many other things that didn’t work. We were willing to try anything for her. He told us that the Zantac would take about 3-4 days to see results, so we went home with a new prescription & a lot of hope.

ZANTAC

s t a r t i n g ||

Nora was started on 1.0 mL BID (twice per day) to see how that worked for her. Just like our pediatrician told us- within 3 days- she was an entirely new baby. I honestly don’t think I have ever met a baby as smiley and happy as she was! Her personality could finally shine through and it made me so incredibly happy & relieved. Her fussiness subsided almost completely, her gassiness was tremendously better, and her sleeping was amazing! She would occasionally give us 5-6 hour stretches and I felt like a new woman. Within a couple weeks I noticed her gas coming back & she actually seemed to be spitting up more than she was before the Zantac. I called the pediatrician to let him know that had been going on for a couple days and he increased her Zantac to 1.2mL BID to see if that helped- and it did. Zantac is a weight-based dosing, so the dose needs to be increased as babies age and gain weight.  Things were great.

w e a n i n g ||

Around 3 months old, a research study came out stating that babies on antacids (including Zantac) for more than 60 days increases (doubles) the likelihood for childhood food allergies. With this new information, our pediatrician decided it would be best that Nora be weaned off the Zantac, especially since she was at the age that most babies “grow out of it”. I was so so sad! I completely agreed with the reasoning, but was so sad that we finally had our happy baby & the Zantac was working and now we had to stop it. We slowly weaned her off of the Zantac- decreasing her dose by 0.2 mL every 2 weeks. It was a long process, but I started seeing the effects come back when we backed her down just once. It was hard. She was still incredibly happy- but the gas & back arching got worse again & the spitting up kept happening as well. She also decided to take back giving us those nice 5+ hour sleep stretches & developed a raspy cough.

r e s t a r t i n g ||

At Nora’s 4 month appointment, our pediatrician asked how things had been going with weaning. When I explained the symptoms she was having & he heard her cough, he decided that we should try restarting her at the lowest dose she had weaned to (0.2mL BID). Keep in mind- Nora is now bigger, so this dose, in my opinion would do NOTHING. We tried it and it worked for a couple days, but subsided quickly. I even called and we increased her to 0.6mL BID (half of her original dose) and that still did nothing. So I quit. I quit forcing medicine down her that didn’t even work. I quit hoping that somehow it would suddenly “work” as quickly as it did the first time we started it with her. And now, we’re here.

CURRENT SITCH

So, here we are. No longer on any dose of Zantac. Up every 3 or so hours at night. Terrible napper in the day. Occasionally gassy, but manageable. Back arching queen. I usually feel like I am nursing an acrobat- it’s quite a site at times. She’s not fussy- super happy, which makes me happy. Spitting up is still happening more often than before. I called when the 0.6mL (half dose) of Zantac wasn’t working and the pediatrician basically told us we need to see a Pediatric GI specialist. To me that seemed extreme and overwhelming for a little bit. It took a while to sink in, but after waiting a couple weeks to see if it would get any better (it still hasn’t), plus Nora being on the smaller end (spitting up often does not help this) we decided to go through with it and just see what they say. Our appointment is early August & I will be sure to keep you all updated.

Reflux is way more than just spitting up. It can really take a toll on a little baby- and the parents as well. So if some of your mama friends are struggling with this- reach out and offer a helping hand. There could absolutely be worse things to struggle with as a mother, but reflux is NOT for the faint of heart. It is hard. Babies can fall into so many different categories with reflux- some are just ‘happy spitters’ and don’t really have many other symptoms, while others struggle keeping any part of their meal down. Nora seems to fall right in the middle, somewhat toward the worse end, but not entirely. It’s unfortunate and it’s nothing you can control as a parent, which is hard. It’s hard to see them in pain and struggling to gain weight. It’s hard to see them so uncomfortable that they have to arch their back constantly to try & help work up the acid. It’s just hard all around, no matter who you are. Medications don’t always work and babies don’t always “grow out of it” around 3 months or 6 months.

We will see the GI specialist & see what they think, or what we could do for her, but we are absolutely taking this with small strides. In the end- we just want what’s best for our daughter & to make her as comfortable as possible. We will gather our options and go from there. We may decide to move forward with other medications, we may not. It depends. But I am an open book with all things motherhood, so I will absolutely keep you all updated. Thank you for listening!

 

xx Karrie & Nora

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