The plot thickens

Today, we went to Children’s for Stella’s weekly occupational therapy (OT) appointment. We are lucky to work with one of the best therapists in the country when it comes to infant feeding issues. At her suggestion, we are trying out thickened feedings in the hopes of making swallowing easier for Stella.

The therapist explained that a lot of babies with reflux have difficulty with swallowing. No one is really sure why, but the experts are beginning to understand it a bit better. Our therapist’s theory is that reflux, or more accurately GERD (Gastroesophageal Reflux Disease), causes inflammation which interferes with the sensitive receptors in the throat that trigger and guide swallowing. By thickening Stella’s formula, we may be able to slow the flow down so that swallowing is easier for her. Last week, we tried thickening for the first time, with little success. The mix was just too thick, and Stella was having to work too hard to get too little. So this week, we came up with a new ratio of formula to thickener that should work better. I tried it out at her last feeding and it went pretty well–not great, but okay. We’ll try it a couple more times before we judge it.

The therapist told me that I could assess how well a feeding is going, and if a feeding strategy is working, by listening to Stella’s breathing–it should sound comfortable and smooth but steady. There should be two or three sucks before each swallow. Too fast and frantic, say, one suck per swallow, and she winds up gulping, getting upset and pulling away from the bottle. Sometimes, she accepts the bottle in her mouth and doesn’t suck at all, or sucks very little (with four or more sucks per swallow), which means the formula is too thick and slow or that she simply doesn’t want to eat. Which brings me to a key point. Stella is in control at all times. However thick or thin the formula, however big or small the opening of the nipple (we’ve tried three different types of nipples so far), she can choose how hard to suck. She controls the flow. So really, all we can do is try to gauge what makes her most comfortable, and let her take it from there.

This hasn’t been an easy fact to accept. (Or should I say “tough to swallow?” Ahem. Sorry.) My family has a very American attitude when it comes to the power of hard work and determination. As cheesy as it may sound and as a big a cliche as it is, I have always believed that if you try hard enough, you can achieve anything. This belief propelled me to some small but personally gratifying successes in academics, athletics and my career. But this situation with Stella isn’t so simple. Ultimately, after all our best efforts, it’s up to Stella to turn this around. Cody and I fully believe that she can do it. But we can’t force it. And therein lies a fitting lesson for us as new parents. Now and in the years ahead, Cody and I must do our best to support Stella. To love and encourage her. To provide her with the environment and tools she needs to reach her potential. To never give up on her. But then, as hard as it may be at times, we have to let her find her own way.

I’m not proud of this, but after one particularly disappointing feeding last week, I actually threw a bottle across the room. Not good. Not good at all. Rest assured, I was immediately ashamed, and I won’t do it again. Thankfully, since then, Cody and I have come to accept the situation a bit more, instead of fighting it so much. Our anger and fear have subsided a bit. We more purposefully focus on the positives, however small. If she only takes a little from the bottle, but seems relaxed, we celebrate the ease with which she ate and compare it to the screaming and arching she used to do upon being tipped into the feeding position–before the bottle was anywhere near her mouth! Today, she drank some from the bottle, took a break and went back on the bottle not once but twice! A few weeks ago, that was an impossibility. She’d give it one go, if you were lucky, and soon after she’d pull off and it was over. No amount of cajoling should convince her to continue. So, she is making progress, and to keep us focused on that, I’ve begun to note all the positive signs in our feeding log.

When the tube comes out (oh, what a glorious day that will be!), we’ll look back at all of this and marvel at how far we came. Cody and I will dance for joy and pat ourselves on the back. But, really, it will be Stella who deserves the credit. I can’t wait to give her a congraluatory kiss. Until then, we’ll celebrate every little success along the way. Hope you’ll join us.

Baby steps

The first bottle feeding of the day is always the worst. We’ve learned to lower our expectations for that one. Yesterday, she completely refused. Didn’t take a drop. In the days preceding, she took around 20 mls (out of 115).

Well… today, she took 100 mls from her first bottle! Then, as I held her up in a celebratory moment, a bunch of the 100 mls cascaded back out onto my Natick (hometown) sweatshirt. Such are the ups and downs of this journey. They come in such quick succession. It’s nauseating!

Regardless of the upchuck, I see it as a good sign. I don’t think that the regurgitation caused her much pain, though she did furrow her brow afterward, as if concerned or confused. So I’m hoping that, overall, it was a positive eating experience and a baby step in the right direction.

Today, Stella’s doctor recommended that we take her to Children’s for an ultrasound, to help rule out an obstruction in her GI tract, which could be impacting her reflux. Any type of non-invasive investigation into what could be affecting Stella is a great idea! He’s sending the referral today, and I am to call Children’s tomorrow to schedule the ultrasound.