#mommyproblems: I have a high needs baby. Oh, and she has silent reflux.

We’ve come a long way from those early months of eating problems, sleeping problems, and fussiness all day every day. Things have gotten so much easier in some ways, but are harder in others. Ava no longer screams bloody murder the second I put her in the shopping cart, but if I try to change her in a public restroom she has a meltdown. She doesn’t cry for an entire 20 minute car ride anymore, but she still cries anytime someone tries to hold her who isn’t me, daddy, or grandma (this has been going in since she was 4 months). I wouldn’t say I was completely naive to the difficulties of motherhood and having a young baby, but she really threw me for a loop. I remember when the nurse brought her back into our room a couple of times when we were still in the hospital because she would not settle down in the nursery and because I was worried about her nursing I didn’t want her to use a pacifier. Maybe at that moment I should have known Ava was going to be a handful, but despite my fatigue I was just so happy to have her. We brought her home (actually my parents’ home since we were still waiting for our house to be finished) and she was fine, she didn’t seem excessively fussy at all. I had some difficultly nursing at first (she ended up having a tongue tie that we had reversed at 2 months), but we saw a lactation consultant and it got easier. Then 2 weeks later we had a night where she cried 2 hours straight, I couldn’t get her to sleep and neither could my husband or my mom. The next day she was still going on crying jags, and they continued on from there. We tried gas drops, massaging her belly, bicycling her legs. I tried cutting out dairy. I brought her to the doctor and she said she was healthy. I went to lactation group because I worried she wasn’t getting enough breast milk. Apparently she was. Then around 3 months I would try to nurse her and she would pull away, arch her back and scream. I thought maybe my supply was dwindling and I started giving her formula. I was getting so stressed from nursing I couldn’t continue. But, Ava still would not eat more than 2-3 oz at a time, she continued to pull away, arch her back and scream when I attempted to feed her. At times I had to get her half asleep just to get her to eat. I went on the internet searching for answers, and I found out about silent reflux where babies had similar symptoms as Ava. In these babies, the acid would come up the esophagus, but not all the way up and they don’t actually spit up all the time like typical reflux. I went back to the ped and she referred is to a gastrointestinal specialist. We tried Zantac in the meantime and it possibly gave her a rash so we stopped. The GI wasn’t convinced it was silent reflux and he sent us to a feeding specialist for an evaluation. It took another month of tortuous feedings before we could see her and she found Ava’s feeding pattern to be slightly dis-coordinated but nothing of major concern. She made suggestions in changing the bottle we were using. It seemed to help a little, but not much. The GI was finally convinced to let us trial Omeprazole. And that same day, Ava started eating better. It was the biggest relief of my life. She still never took in huge volumes like all the other babies her age we knew, but she didn’t cry anymore when I offered her the bottle.

I thought after that our problems would be solved and Ava would go back to ‘normal’. But around that same time she developed some early form of stranger anxiety and nobody outside myself and my husband could hold her. She also wasn’t sleeping well, which I talked about here. Instead of crying before feedings she was crying after them. Actually, she was fussy a lot of time and I didn’t know why. I thought it was colic, but she just didn’t seem to fit the mold. This chart was extremely helpful in making the differentiation. I never brought her anywhere because she would scream in the carseat and stroller. And if I had to do a feeding in public, forget it. It just ended up with both of us in tears. She was also very easily overstimulated; I brought her to my aunt’s 60th birthday and she cried the entire time. So I went back to the internet and I came across the ‘high needs’ baby. And I realized that I have one. Ava fit 7 out of the 12 characteristics as listed by Dr. Sears. In some ways I was relieved because there was nothing wrong with her health-wise. I was also terrified because there was nothing I could do to make it better. I could only hope she would outgrow it.
Needless to say, we’ve survived Ava’s first year relatively unscathed, although I’m definitely not considering having another little one anytime soon. I’m still recovering. But, I wanted to share what I think was helpful during the peak of her ‘high needs’:

1. It’s okay to vent.
I think talking about it with my husband and my mom (who practically lived here during the time because my anxiety was through the roof) was so cathartic. I know I must have sounded like a broken record much of the time, but a sympathic ear is all you need. You won’t necessarily get any solutions, but it does help to lay out your feelings and know that you’re justified in them.

2. Take any help you can get.
I would have my MIL watch Ava a lot during those early days because Ava wasn’t sleeping and therefore neither was I. And I had days where I just wanted to break down and cry. Sometimes you have to just step away from the situation and don’t feel guilty about it. I don’t know how I would have made it without those breaks I got.

3. Get into a routine.
I know some people say that high needs babies can’t get into a routine, but I still think it’s worth a shot. It didn’t work right away, but Ava pretty much knows what’s going to happen daily because we do the same general routine everyday. In the beginning I started doing an ‘EASY’ routine (eat, activity, sleep, you) and I’m glad we did. I think having some structure to the day makes her more comfortable in knowing what will happen.

4. Join a support group.
A website that I found extremely helpful was thefussybabysite.com, which was started by another mom with a high needs baby to provide support to others. I don’t know any other moms in my personal life who are like Ava, so to me it made me feel like I wasn’t alone and I was not crazy. It also linked me up with the support group on Facebook. None of my other mommy friends really believed me when I talked about Ava’s high needs and it was a relief to read stories from other moms who went through similar experiences and to share my own without fear of judgment.

5. Lower your expectations.
I’ve come to realize that while things have gotten better, Ava will probably always be high needs. Sometimes she does great with changes in her routine, others she goes nuts. When she is overwhelmed, it’s hard to snap her out of it. She’s not always going to be ‘go with the flow’. She’s not going to be that relaxed, easy baby I had pictured before she was born. But, she is healthy and happy. I live to hear her laugh. And she is smart and observant. I am amazed by how quickly she learns these days.

6. Follow your gut.
While I was convinced Ava had silent reflux, nobody else was. I had to advocate persistently to get Ava what she needed so she was no longer in pain when eating. If you think something just isn’t right, don’t let up until you feel like you got the answers that truly make sense.

 

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My happy high needs baby.

Ultimately, things will get better. That’s the main message I want to give moms who are in the midst of the high needs craziness. Just keep doing your best and know that it’s worth it, even though you probably feel like running away sometimes (I know I did). Just hang in there!

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One thought on “#mommyproblems: I have a high needs baby. Oh, and she has silent reflux.

  1. Pingback: #mommyproblems: My breastfed baby is refusing the bottle! | Always, Bree

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