{Part 2} of our trip to the States!
If you haven't read {Part 1}, click HERE.
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We drove from New Hampshire straight to Children's Hospital Boston on July 5th. Our much anticipated appointment with a Pediatric Gastroenterologist was that afternoon.
As we walked from the parking garage toward the hospital, we saw this:
Ranked #1.
We were walking into a world-renowned hospital and we were hoping for some answers.
Maia was seen by a wonderful doctor (who is also a Harvard Medical School professor) and we spent almost an hour giving her history. We started with my pregnancy and continued, detail by detail, until present day.
She agreed that Maia has a pretty bad case of Acid Reflux. She said that our doctor here in Germany was doing a great job managing it by recommending 100% use of Alimentum (hypoallergenic) formula and that her dose of PrevAcid was appropriate. She recommended a soy, dairy, whey, and casein-free diet until Maia was at least a year old. (I know…that's a lot of foods to avoid!!) She said the acid reflux could be aggravated by one or more of these foods, but we can't call it an 'allergy' until after she turns a year old. Right now we call it an 'intolerance.'
She recommended a Modified Barium Swallow Study, an Upper GI barium study, and a visit with a nutritionist…for starters. She was able to pull strings and get us appointments for both barium studies while we were still in Boston! (Normally it takes 2-3 months to get an appointment!) We actually left her office in a rush to run downstairs to the Radiology department for the Upper GI barium study as a walk-in. The barium needs at least 24 hours to leave her system before they are able to do another barium study, otherwise I suspect we would have had both studies done that afternoon! We only waited a short time before they were able to do the test.
They had Maia lay on the x-ray table, hands over her head, and then had her drink barium solution out of a bottle. They rotated her into three positions: first on her left side, then on her back, and finally on her right side. They watched her imagine on the monitor and somehow managed to have a normal conversation with each other over her incredibly loud screaming! She had to fast for the test, so she was starving, she was totally tricked into drinking disgusting barium, AND she was being held down. To say Maia was unhappy would be an understatement! But it was literally a two minute test (they just needed the barium to work it's way down and start moving into her intestines) and they said everything was working normally. YEA!!
Remember how I said we ran to the Radiology department to start the Upper GI study? It was only half-true…Romas ran to Radiology with Maia and I stayed behind to check out of the GI department. They called to schedule our appointment with a nutritionist and they were booked for 2 months. No surprise. The woman asked why I needed the appointment to be that same week and I started explaining how we were a military family, living in Germany…you know the rest! After she listened to me explain, she put me on hold and when she came back, she gave me an appointment for the next morning! She said, "We are really booked, but I'm feeling patriotic and I can squeeze you in tomorrow if you can make it."
WOW.
Of course we could make it!! We were back at Children's the next morning at 9am for our appointment. The nutritionist was super nice and had only found out about our appointment with her when she arrived at work that morning! We chatted for a while about life in the military, life overseas…and then we started giving Maia's history. Again.
After we talked about feeding schedules, routines, issues, and concerns, she calculated calories and decided that Maia was getting enough calories daily. We've been calculating Maia's calories since she was three weeks old and no matter what we give her, it never seems to be enough. She's been labeled as "Failure to Thrive" her entire life. She was reassuring when she said, "You know the kid on the track team who eats four times as much as everyone else and he's still as thin as a rail? Maybe Maia's just the skinny kid."
Hmmmm.
I'd never considered that before. After all, we don't have any skinny people in our family!! Maia could possibly be the first skinny kid!! I guess there's a first time for everything!
We left that appointment feeling great! We had our next test the following morning (the Modified Barium Swallow study) and then we were officially on vacation!
The next morning we arrived bright and early for Maia's Modified Barium Swallow study. I was dreading it. The last thing I wanted was to hold Maia down while she screamed bloody murder again. So when we were called brought into the room, I was pleasantly surprised to see a car seat sitting on the x-ray table. All she had to do was sit in the car seat and drink a little barium. Thank goodness!
They filled one of her bottles with barium and I had to stand in front of her and help her hold it. They were watching on the monitor. She aspirated the liquid. One minute she was drinking, the next she had pulled the bottle out of her mouth. No cough. No choke. No reaction whatsoever. But the Radiologist and Speech/Language Pathologist saw it on the screen. The liquid actually went "down the wrong pipe," as we say. They took the bottle and thickened the barium. She drank it with no problem. Then they gave me rice cereal mixed with barium and she ate that with no problem too. Again we were only in the room for a short time, but this time we'd hit a snag.
The Speech/Language Pathologist said that it isn't all that uncommon for infants to aspirate. Maia would need to drink only thickened liquids until we could return in 2-4 months for a repeat swallow study. She said that hopefully she would outgrow it like so many other children.
Bummer.
We were so close to heading back to Germany on a high note. Now we were leaving with recipes on how to thicken formula, water, and juice. We talked to the Gastroenterologist that night and she said Maia was very lucky to have never had any respiratory infections or pneumonia because of her aspiration. She said we should return to have the swallow study again but we should also schedule a number of other appointments in case she was still aspirating. We have to schedule office visits with: a Gastroenterologist, an ENT, and a Pulmonologist and we would also need to schedule a Triple Scope procedure where Maia would be put under anesthesia and each of the three specialists would take turns scoping her to look for reasons why she aspirates.
It is really disturbing to think about. I don't want them to scope her. Poor Maia. Right now I'm just hoping to delay the return until it's been a full four months to give her ample time to outgrow the problem. Hopefully we'll go all the way there, she'll do fine on the swallow study, we'll cancel the appointments with the specialists, and we'll just enjoy our week in Boston. Right now we're waiting once again for approval from our health insurance. We have to be approved before we can start planning.
We went down to the Cape to enjoy the rest of our time in the area. We spent a few days wandering around Provincetown. It is such a blast!! Every time I am there, I enjoy it more and more. It's such a quaint town with wonderful little shops, ice cream, fudge, and taffy.
Maia and I posed for a picture on the beach together. Once with our backs to the water...
And once with our backs to the P-Town Monument.
Unfortunately, the day we planned to spend at the beach was the only day it rained. Actually, it POURED!! It was kind of nice to have a day to just relax and have an excuse to do nothing…but I haven't had a beach day in years. For a couple who both grew up on the water, we've been missing that salt air a lot. I guess we'll have to wait a little longer.
We went back to Boston for the last couple days of our East Coast stay. We were able to meet up with my best friend, Kelly, who lives in Boston. We spent the morning at the New England Aquarium and then walked across to Fanuel Hall/Quincy Market. It's absolute tourist heaven, but I've always loved the atmosphere. It's only pedestrians and there are lots of restaurants and stores, even little vendors. We had lunch and walked around a little. We had such a great time!
On July 13th, it was time to say good-bye to the East Coast and head out to the desert. We were flying to Phoenix to spend the last week of our vacation. Time was flying by!!
It is sad what a baby has to go through so young. Pray for her. But love the pictures of you two by the beach.
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