Tuesday, November 24, 2009

Waiting...

Well, we were told 5 minutes after Chase's first bottlefeeding attempt was supposed to begin that we were going to hold off. When they did his swallow study earlier today, they started with a regular consistency barium mixture and progressively thickened it. By the time they got to the thickest consistency, he tired out (as most single-ventricle babies do) and didn't take enough of the thickest stuff to get a good enough assessment of how he'll do with a full feed by bottle of the thickened milk. SO... We didn't get to do the bottle today. We have to do another swallow study either tomorrow or Friday (dependent on scheduling) to take more of the thickened barium mixture before we try our first bottle feed. That's what this is all about: the waiting game.

Argh.

Please pray for hubs and I (more so impatient little ME) that we'll be able to take this in stride since it's really all in Chase's best interest.

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Swallow Study Results

We finally went for Chase's swallow study this morning at 10:45 AM. He took about 30 ccs of a barium-water mix (eew!) while we watched on the x-ray to see how he swallowed and whether or not he aspirated. From my untrained eye, he seemed to do great! But we met afterwards with the speech therapist who explained the official results to us.

Apparently there are two things that can happen when Chase swallows: the fluid can aspirate, which means it goes down his throat and into his lungs (not good!) OR the fluid could penetrate, which means it starts to go towards his lungs but eventually gets pulled down the esophagus at the last second (not great). In Chase's case, the liquid seems to penetrate a lot, which can be dangerous. Apparently babies don't typically cough if fluid goes down their trachea like adults do, so we wouldn't know he was aspirating. SO... The game plan is that we will give him breastmilk thickened with cereal in a bottle today at 3:30 PM for his first real mouth feeding. He typically gets 78 ccs per feed every 3 hours in his ng tube, so we'll see how much he's able to take through a bottle and give him the rest through his tube. We may attempt another bottle for one of his evening feeds as well. As he shows he's able to handle the bottle feeds, we'll increase the frequency, giving him any remaining milk through his ng tube (so he still gets 78 ccs total at each feeding). Once he's able to take all of his feeds by bottle, we will be discharged from the hospital. But we won't be done with the feeding yet. We'll have to repeat the swallow study in 2 weeks to see if his ability to swallow and not penetrate has improved. If so, we will then decrease the amount of rice cereal being added to his milk so it's less thick. My guess (haven't confirmed yet) is that we'll do that for another 2 weeks then repeat the swallow study again. If he does well, we might then be able to try non-thickened milk. Obviously my goal is breastfeeding, but it appears we're not anywhere near that point yet.

A few things to note... Chase has a paralyzed left vocal cord. Since the cord doesn't move (the right and left should meet together to protect the airway), there is a gap that could cause him to aspirate. We were told today that 90% of babies with this gap typically fail the swallow study, are not given bottles at all and go straight to a g-tube, a feeding tube that is surgically placed directly into his stomach and is used for all feedings. So although we're a bit disappointed that Chase's timeline isn't what we were hoping for, we are happy that he'll be able to at least try bottle feeding. We pray that he does well and will excel with this.

I'm guessing we'll have some more answers and probably more questions after his first bottle feed this afternoon. I'll be sure to keep y'all updated so you'll know how to pray.

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