Week 6: Before and After

Week 6 was the first week of Lemon's life during which he saw no doctors.  This brief respite from the medical profession left us free to enjoy family, friends, and developmental milestones.  We finished up our trip to New York with a birthday party for Great Grandma Virginia, where at last I managed to capture a "four generations" picture with Great Grandma, Grandma, Papa Bear, and Lemon.



I continue to be really touched by how much Lemon means to all of his grandparents, and the effect may even be magnified with Great Grandma.  While we were there, she was reminiscing about how she is the youngest of 11 siblings, and the only one still living.  She wondered aloud why it was that she had hung around so long, and then turned to Lemon and said, "Well, maybe it was so that I could meet you!"

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After our last visit with Great Grandma, we caught the train back to Boston.  The feeling of relief at arriving home was profound.  Although overall our trip went very smoothly, Lemon's CF doctors had warned us before we left that, because he is so young, any kind of illness would likely result in hospitalization and lots of terrible-sounding tests.  While it is certainly true that I viewed the New York subway as a hotbed of contagion before this trip, my level of paranoia was orders of magnitude higher with Lemon around.  Every time I heard a cough or sniffle, I immediately scanned the car to identify the source.  Once the source was identified, I watched the person who made the offending sound to try and determine if this was a cough or sniffle caused by illness, or just a innocuous clearing of the throat or nasal passages type of thing.  We also went through an entire bottle of Purell.  Although there's no reason to think that the MBTA or Boston generally is more free of disease than New York, it certainly feels that way to me, so I was very glad to have Lemon back on his home turf.  No more rides on the A train until he's a few months older!

 I feel like Lemon's physical and cognitive development really took off this week (merely correlated with the lack of doctor visits--I make no claims about causality!).  He is much more interested in the world around him, and will track people and objects with his eyes.  He's also beginning to use his limbs in a much more purposeful way, even if his coordination isn't quite there yet.  His musical development also seems to have picked up.  In my first ever cellphone video, I captured this little clip of Lemon appearing to stomp his foot in time with his music.  According to Burton White (author of the indispensable classic The First Three Years of Life), Lemon is now a "Phase 2" baby (phase 2 being 6-14 weeks of age), and it's easy to see from watching him why White chose to draw the line between stages there.  Lemon is really substantively different than he was last week.  

Maybe because of these dramatic developmental changes, and certainly in part due to his CF diagnosis, I haven't felt even remotely ready to leave him and go back to work, even though my maternity leave is officially over.  Luckily I have some vacation time banked that will give me a few more weeks at home full time with him.  I do have a very strong incentive to go back to work at least part time, though--our whole family is on my health insurance, and we certainly need to keep that going!  We'll see how I feel about returning at 8 weeks.  I'm starting to be really envious of moms in European countries who get months (or even years) of maternity leave!

With the little free time I've managed to carve out for myself, I've continued to make progress on my fitness with the hopes of returning to athletic events sometime in the near future.  I can now run 5 km at a time, and am continuing to build on distance and speed.  I'm inspired by my cousin Miki, who had a baby two days after Lemon was born, and is already planning on doing a 10k in October.  In fact, she's using her 10K to raise money for CF research in Lemon's honor--click here to support her!

I'm sure many of you are wondering when I'm planning to return to cycling.  I'd been wondering that myself, and a few weeks ago I even went so far as to clean up one of my bikes and take it for a spin up and down the block.  It felt great, and I was eager to get started on some longer rides again.  Then I found out that one of my dearest friends was in a terrible accident--ironically on that very same day.  She suffered some very serious injuries and is facing a long, slow recovery.  That news really shook me up, and made me rethink a rapid return to cycling.  I still long to return to the open roads, but I also feel like I need to wait until Lemon is a little older.  I just can't afford the risks right now.

My friend who suffered this accident wrote a post on her blog about "before and after" moments, which was the inspiration for my post this week.  Obviously my friend's current accident represents one such moment for her--and by extension, for me as well.  It also made me reflect on the other "before and after" moments that I've experienced recently, and it made me realize how the moment of Lemon's birth is so much more significant to me that the moment of his diagnosis with CF.  I can remember both very vividly, but I feel like only one of them (his birth) really bisects my life into a true "before" and "after."  CF will always be a part of his life, and by consequence, of my life.  But the fact that he is here and has a life ahead of him is really what matters.

Week 5: Live from New York!

Lemon began this week with a visit to the regular pediatrician, where we found out that he gained a further 11 ounces in the last week, bringing him up to 8lb 11oz, and either the 19th or 23rd percentile in weight, depending on whether you believe the iOS or Android version of the baby tracking app that Papa Bear and I use.  His pediatrician thinks he may reach the 50th percentile for weight by his next check-up (mid October) which is great news.  His next weigh in will be October 2 at his visit to the CF clinic, so we're hoping that he continues to make good progress.

We were glad to hear that he was doing so well and had a clean bill of health, because we had big plans in store for Week 5: Lemon's first inter-state voyage.  Way back when I was still pregnant, the idea of traveling to New York City with a one month old infant seemed entirely rational.  I mean, infants are small and spend most of their time sleeping, right?  Plus, they only eat one thing, which I'm making in-house, so to speak.   And, we had a particularly good incentive to visit New York: to introduce Lemon to his Great Grandma Virginia, who turns 89 years old today.  Since her health is a little fragile, we didn't want to delay the visit.  And, Lemon is so cute at his current size.

So, we booked train tickets, made reservations at a little bed and breakfast (really more of a vacation apartment), and then didn't give the trip any further thought until late last week when we realized, "Holy cow, we're going to New York with a newborn.  On Thursday."

I'd read on a travel blog once that the first time you travel with a baby, it feels like you're moving because of the amount of stuff you have to take, and this is certainly true. 

What may be difficult to appreciate from the photo is that we packed about 150% as much stuff for 5 nights in NYC as we did for 2.5 weeks in Russia last summer, back when there were just two of us.  Lemon got one suitcase, while Papa Bear and I shared the other.  A subway ride, a train ride, and another subway ride later, we arrived at our tiny (really tiny) apartment in Greenwich Village.   The trip itself was quite smooth and Lemon slept for large portions of it.  We fed him and changed his diaper twice on the train which was a little awkward and undignified but totally manageable.

One little issue we hadn't fully resolved until the day before we left: where was Lemon going to sleep?  Our accommodations did not come with a crib.  Fortuitously, just before our departure, I'd exchanged email with Lemon's doctor about sleep positions for CF babies.  We'd noticed that Lemon has a hard time keeping his throat clear while lying flat on his back (the recommended sleep position for infants).  She suggested that we get an inclined sleeper for him that would support him at a 45 degree angle with his head up to help prevent reflux and facilitate swallowing.  So, I went online amd ordered one to be delivered to the Babies R Us in Union Square where we picked it up when we arrived.   How people raised children before the Internet is a great mystery to me.  In any case, the incline sleeper is really fantastic.  Lemon sleeps in it more soundly than anything else we've tried so far.  He loves it so much, in fact, that we're leaving this one in New York with his grandparents for future visits and buying a second one for our house.

In New York, we've been on a busy schedule of visits with friends and family.  First, we met up with Grandma and Grandpa for lunch at one of their favorite restaurants, Olive's in the W Hotel in Union Square.  The hotel has a nice lobby, so we hung out there for a while afterwards to give Grandma and Grandpa some more quality time with Lemon.

We also met up with my old grad school friend (now known as Professor Nick) and had a delicious breakfast near where we're staying.

Finally, we made the epic journey out to the far reaches of Queens to see Great Grandma Virginia.  Of course, the A train was undergoing repairs so we had to take a shuttle bus for the last third of the journey, just to make sure that Lemon had the complete New York public transit experience.  It was worth the journey, though--Virginia was really delighted with Lemon (who wouldn't be?) and it was a great experience to see two people, one of whom is three orders of magnitude older than the other, holding hands--in this picture, Lemon is one month old and Virginia is 1068 months old.  We wish her a very happy birthday and another year of health and happiness.  We hope to be celebrating the big 90 (and Lemon's first birthday) with her next year.

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...

Week 3: The new normal

I feel as though in week three our life has begun to take on some semblance of routine after two weeks of excitement, turmoil, medical appointments, and tons of visitors.  We even had a whole day (blessed, wonderful Thursday) where we had no appointments and no visitors.  With all this unstructured time, the three of us are starting to learn now to lead our lives as a family, and Papa Bear and I are learning how to handle Lemon's basic nutritional needs.

Before every feeding, Lemon needs to receive a dose of supplemental enzymes that enable him to digest his food.  The enzymes come as capsules that contain a bunch of little tiny beads.  Each bead has a special coating that only dissolves when it encounters a neutral pH.  This means that the coating on the bead stays intact in the acidic environment of the stomach, and only dissolves and releases the bead's contents when it reaches the neutral environment of the small intestine.  That is where the enzymes normally act to help break down proteins and fats in food.  So, before each feeding, I have to open up one of the capsules, sprinkle the beads into some baby applesauce (it's important to use an acidic food like applesauce so that the beads don't dissolve prematurely), and spoon those into Lemon before the feeding starts.  As those of you who have breastfed an infant will appreciate, it's pretty important to make sure that there are no enzyme beads left in his mouth before the breastfeeding portion of events gets started.  Luckily, Lemon seems to quite like applesauce and has no trouble taking the enzymes.  We refer to them as his appetizer.

 

A more challenging aspect of Lemon's nutrition is vitamin supplementation.  Because CF patients have trouble digesting fat, they also have trouble absorbing the fat-soluble vitamins A, D, E, and K.  So, we need to give Lemon a daily dose of these four vitamins to ensure that he's getting enough.  They come in a foul-tasting, viscous, bright orange liquid (bright orange because of the vitamin A, like a carrot), and I have to get 1mL of this stuff into Lemon every day.  He really doesn't like it.  Because the vitamins stain everything they touch, I usually try to give them to him when he's wearing nothing except a diaper, and then feed him immediately afterwards so that he can wash the taste out of his mouth.  This strategy usually results in both me and Lemon looking like the losing side of a paintball tournament.  At least orange is my favorite color, and besides, it's a good excuse for a bath. 



It is very gratifying to see the results of the nutrition therapy.  Lemon is gaining weight like a champ now, which you can clearly see in his face--he finally has cute round baby cheeks and a double chin.  I feel like his face has continued to take shape, in addition to rounding out--he looks more like Papa Bear every day.  Thankfully, he has the same cleft chin as me so there is some evidence in his face that he and I are related.

As we settle into a more normal routine, I've been able to start thinking about exercise again.  My first goal is to restore some strength to my abdominal muscles, which were just the tiniest bit stretched out by carrying Lemon for 9 months.  I'm doing some pretty gentle exercises at first, but they seem to be having the desired effect. 

I've also very gradually started to ease back into running.  One of the marvelous baby gifts we received is a Chariot (http://www.chariotcarriers.com/en/us), which is a sport stroller that can work as a bike trailer, a jogging stroller, or a cross-country ski trailer.  We have it set up in jogging mode now, and this week Lemon and I took it for a little test drive.  Our friends gave us a "baby bivy" insert, so he can ride in it lying down like he's in a little bassinet.  He and I were both favorably impressed during our first outing (I ran a whole mile at not much slower than my pre-pregnancy pace, and he fell asleep a half-mile into the outing).

 

I'm trying to be very conservative about my return to running so that I don't end up injuring myself.  The goal is to run a marathon in Duluth, MN on June 21, 2014 (http://grandmasmarathon.com/site/).  There are half-marathon and 5K races at the same time as the marathon, so if you happen to be in lovely northern Minnesota at that time of year and are interested in running any of those distances, please let me know and you can be part of our team.  There will be T-shirts.  The marathon seems like it's a long ways off, but I'm basically starting my training over from zero.  It's a little frustrating to be so limited in terms of distance now, especially since I was 2/3 of the way through training for a marathon when I found out that I was pregnant (and could comfortably run 18 mi at a time), but I'll get it back eventually.     

As part of our "new normal" life, Papa Bear and I are working hard to instill our love of literature in Lemon.  Since he's too young to really appreciate being read to as of yet, we're mainly just trying to set a good example.  I've read two great books with him so far (Heads in Beds by Jacob Tomsky, and Unbroken by Laura Hillenbrand).  Papa Bear is trying to get him hooked on sci-fi at an early age, beginning with The Great Book of Amber by Roger Zelazny.  The main advantage of this book seems to be an extremely favorable pages-per-dollar ratio...Nonetheless, Lemon appeared to get a kick out of it.  It must be fun to sit on the lap of someone reading a book that weighs almost as much as you weigh yourself!

Week 2: Grandparents, great-grandmother, cats, and serious news

As week two of Lemon's life got underway, we wrapped up our visit with Grandma Carol and Grandpa Dudley.  We had a nice lunch with them at our place, where Papa Bear and Grandpa Dudley celebrated Lemon's arrival with chocolate cigars.  For anyone who is curious as to what Lemon might look like when he is in his 30's or 70's, I don't think it's necessary to look further than these photos!

We also took Lemon for his first dinner at a "nice" restaurant with Grandma, Grandpa, and Nona.  One of the most rewarding aspects of being a new parent is seeing the utter joy that Lemon brings to his grandparents--the
 look on Grandma Carol's face says it all.





















In honor of his two-week birthday, Lemon got to meet two more important relatives.  First, he finally met Opa (my father), who was off leading a hike in the Swiss alps when Lemon was born.  Papa Bear was very concerned that, because Opa was away on the day of Lemon's birth, he would have a hard time bonding with his new grandson.  Judging from today's interaction, I don't think that's going to be an issue!  Opa is already planning out hiking adventures that Lemon can participate in once he learns how to walk.

Lemon also got to meet his great-grandmother, Opa's mother.  She was very impressed by how much Lemon's coloration resembles his father's, and by what a good baby he is.  Since she raised four baby boys, she really knows what she's talking about, and we agree on both counts!







While the grandparents have all been overjoyed by Lemon's arrival, our cats Daphne and Denzel have reacted with significantly more skepticism.  When we first came home from the hospital, they spent most of their time hiding either under the bed or in the closet.  Now, they are back out in the open but they are in a constant state of heightened vigilance, waiting to see what Lemon might do next.

On a more serious note, during week two we learned that Lemon has cystic fibrosis (CF).  Papa Bear and I had learned that we were both carriers of CF mutations when I was pregnant with Lemon, so we knew that there was a 25% chance that he would have CF.  Although Lemon gained weight rapidly for a few days after we came home from the hospital, by a week of age his growth had really slowed down, and by the time he was diagnosed at 10 days old by genetic testing, his growth had almost completely stopped.  Luckily, the day after he was diagnosed, we were able to get an appointment at the CF center at Children's Hospital where he got a prescription for supplemental digestive enzymes to make up for the ones that are being made by his pancreas but can't get to his small intestine due to the excess mucus associated with CF.  We started giving him the enzymes right away and it's made a huge difference.  He's more comfortable, sleeping better, and most importantly, gaining weight--10 ounces in the 4 days since he started his enzymes.   Because body weight is correlated with lung function in CF patients, it's really important for Lemon to catch up to other babies his age, and then stay on his growth curve after that.  CF patients typically need 125-150% the calories of a normal person, so it will be a challenge for me to keep up with his demands.

A diagnosis of CF used to be a devastating event, and CF patients rarely survived beyond early childhood.  Luckily for us, research has advanced to the point where CF is a manageable condition, and we have every reason to think that with vigilance and dedication, Lemon should have a relatively normal life, go to school, play sports, go to college, and do everything else that he would have done without the condition.  His life (and ours) will be much harder than if he did not have CF, but the fact that a normal life is possible for him is all that matters to us.  So, although this is very sobering news, we want everyone to know that this is still a very joyous time in our household.  Lemon is a delight and we wouldn't trade him for the world.

The Cystic Fibrosis Foundation  (CFF) is a non-profit organization that has been leading efforts to find a cure for cystic fibrosis, and to improve the quality of life for people living with the disease.  It funds cutting edge CF research, and also provide access to new treatments for CF patients who cannot afford them.  I would like to encourage all of you to consider donating to CFF on Lemon's behalf to ensure that research on CF continues uninterrupted despite the unfavorable funding climate at the NIH.  I plan to use all of my future athletic endeavors to raise money for CF research, so stay tuned to read more about what the events will be and how I'll be training.  I hope those of you who are inclined to walk, run, and bike will join me on these outings.  I will make cool T-shirts if you come!

According to an African proverb (made famous by Hillary Clinton), it takes a village to raise a child.  This is especially true of a child with a challenging health condition.  Thanks so much to all of you for being part of our village.  We couldn't do it without you.