Monday, September 16, 2013

Week 4: Another epic visit to the CF clinic, and a few more relatives.

Week 4 saw another epic visit to the CF center at Children's Hospital.  We've had two appointments there now, and it seems like no matter what they say when you set up the appointment, you should plan on being in the exam room for two hours.  The appointments are exhausting for Lemon (and myself, Papa Bear, and Nona), but we do feel like we're getting the best care in the world so we can't complain too much.  As Nona correctly pointed out, you just have to set aside the whole day for the appointment, and if you go in with the expectation that it will take the whole day, it seems a little less bad.

The appointments begin with hooking Lemon up to a pulse oximeter to measure his heart rate and blood oxygen level.  Since he is still so tiny, they connect the sensor to his little foot.

Once that's done, they measure his blood pressure.  Obviously, he finds the blood pressure cuff much more objectionable than the pulse oximeter sensor for whatever reason.

After the blood pressure and pulse oximeter measurements, we come to the most important part--the weigh-in.  As I mentioned last week, it is critical for CF patients to gain and maintain body weight since body weight correlates with lung function.  After starting on the enzymes, Lemon managed to gain 10 ounces in 4 days, so we were curious to see whether his growth had tapered to a more normal rate.  According to the doctor, infants usually gain 20-30 grams (approximately 1 ounce) per day.  So, everyone was totally amazed when we put Lemon on the scale to find out that he had gained an entire pound (16 oz) in only a week, for a growth rate of about 60 grams per day.  He is clearly eager to make up for lost time.  This also explains why I've been feeling a little drained these last few days!

Since Papa Bear and I are big science dorks, we of course had to make a figure that illustrates Lemon's prodigious growth (see below).  You can see that after he was born, he lost a bit of weight but then gained it back, which is totally normal for a newborn.  What wasn't normal, however, was the fact that he didn't gain any more weight after getting back up to his birth weight.  After he was diagnosed and started the enzyme supplements, though--well, the graph speaks for itself.  He still hasn't quite broken the 25th percentile for weight for his age, and ideally we'd like to see him get up to the 50th percentile, but he's making great progress.  We're also really glad that he's been able to make this much progress on breast milk alone, so we haven't had to supplement him with formula yet.
The doctors also listened to his chest, which still sounds completely clear.  I found their method for listening to an infant's chest from the back particularly charming--the attending physician held him over her shoulder while the fellow put the stethoscope to his back.

Lemon also had a sweat test at this visit.  The sweat test allows the doctors to measure the amount of chloride in Lemon's sweat and is considered the definitive diagnostic test for CF.  Let's just say Lemon did not like that test one bit.  As the technologist was getting him connected to the electrodes for the first step of the test, he cried until his whole head turned purple.  While this was going on, the technologist was also asking me all sorts of questions.  I think it is hardwired into the maternal brain for a mother to be completely unable to process any spoken language at all when her baby is crying.  I was really struggling to come up with answers to the questions, which were pretty simple--I think I would have had trouble coming up with the correct spelling of my last name under those circumstances had I been asked!  In any case, the sweat test confirmed Lemon's diagnosis of CF, which is no surprise given the genetics.  On hot days, we're supposed to supplement him with a little bit of table salt to make up for the extra salt that he's secreting in his sweat.

On this visit, we enrolled Lemon in his very first clinical study.  Being researchers ourselves, Papa Bear and I are very committed to doing as much as we can to support clinical studies to advance care for CF patients.  This first study is an observational one--the study is looking at what type of feeding (breast milk, formula, or both) leads to the best outcomes for CF infants.  All we have to do is keep a little diary about what Lemon eats for his first two years of life, and that will be correlated with whatever clinical data is gathered at his regular check-ups.  We're glad to do our part, and happy that we can start while Lemon is so young.

In non-CF news, it seems that no week of Lemon's life is complete without meeting a few more friends and relatives.  This week, he got to meet his great-aunt Donna and great-uncle Joel.  He really liked them--he fell sound asleep in Donna's arms right away.  And, Joel (who is a musician) gave him his first collection of music CD's, which he really seems to love.  Joel says that musical ability skips a generation--namely me--so he and Nona have high hopes for Lemon's future musical development.

Finally, to our great relief, our cats seem to be growing more relaxed around the new baby.  Hopefully they'll enjoy the few months of relative calm ahead before Lemon becomes mobile...

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