Friday, May 27, 2011

Week Three

All babies spit up.  He is making wet diapers.  He is gaining weight.  He seems fairly happy and content.  These are some of the various statements I kept repeating to myself and to Katie as we progressed through our third week at home in an effort to make ourselves feel better.  As previously mentioned, Edward had started to spit up somewhat frequently and it seemed to be getting worse instead of better.  Still, the above statements were true.  He was gaining weight consistently and continued to make wet diapers - essentially the two goals of feeding.   But it seemed like we were fighting tooth and nail to get every milliliter of breast milk in him and to keep it in.

Reflux is a common problem in babies and especially in premature babies.  For reasons that are unknown (at least to me), the lower esophageal sphincter (LES) tends to intermittently relax allowing gastric contents to reflux retrograde back into the esophagus.  In other words, the feeding tube leading to the stomach (the esophagus) is separated from the stomach by ring of muscle that acts like a valve (the lower esophageal sphincter).  When you swallow, that valve opens up allowing food content to pass into the stomach.  That valve then closes and what you eat spends some time in the stomach being digested and churned about.  Then, another muscular valve at the end of the stomach (the pyloric sphincter) acts as the exit valve that allows food content to pass into the intestines.  Reflux occurs when the first valve between the stomach and esophagus inappropriately opens up.  In adults, reflux is typically caused (or at least made worse) by acid over-secretion -  which is why antacids and acid reducers are the mainstay of treatment for heartburn.  In newborns, acid over-secretion can be a contributing cause for sure, but the issue is generally more mechanical due to the floppiness of the muscular valve.  Regardless of its cause, reflux in a newborn can wreak havoc on their feeding and subsequently on their growth and development.  It can also wreak havoc on the parents as each feed seems like an interminable battle that is painful for both parties involved.  Edward seemed to be getting progressively fussier and fussier by the day.  We were afraid that we were doomed to a long struggle with reflux.

We kept the faith though, pressing on with bottle after bottle.  Then things changed.  The night before we had two follow-up appointments, one with our pediatric general surgeon who did the bilateral hernia repair in the hospital and the other with our regular pediatrician, Edward took a great bottle of nearly two ounces!  Maybe we were starting to turn a corner!....but alas, he spit up again.  But this was a little different.  It came out forcefully and had some pretty good distance to it.  Then he did it again later than night.  Hmmm......

Our first appointment was with the pediatric surgeon.  I was not able to join Katie and Edward for this appointment, but as Katie was describing Edward's symptoms, the surgeon mentioned the possibility of pyloric stenosis.  As mentioned above, the pylorus is the exit valve of the stomach, a muscular ring that can contract and relax as needed.  Pyloric stenosis is abnormal hypertrophy (enlargement) of that muscle which then does not allow food to pass into the intestines and causes back up into the stomach.  Pyloric stenosis is classically associated with two things:  projectile vomiting and an olive-sized mass in the epigastrium (just above the belly button).  Edward was starting to projectile vomit, but only intermittently; furthermore, many of his symptoms seemed like reflux.  The surgeon carefully examined Edward's abdomen for the "olive" but it was nowhere to be found.  The surgeon asked Katie if Edward had thrown up anything green or brown.  Nope.  It was all milk so far....though some pretty malodorous stuff - even his burps smelled particularly foul.  Well, the surgeon said, this could be pyloric stenosis but it is not definitive - let me know if it gets worse!

I left work early that day to join Katie for the pediatrician appointment scheduled for that afternoon.  We fed Edward one more bottle before the appointment right around noon.  Sure enough he spit up again, but this was no ordinary spit up.  This hit Katie's chest with such force that it caused back splatter onto Edward.  Furthermore, it was coffee grounds.  In the adult world, coffee ground emesis is another classical description and typically portends something fairly serious.  Vomit becomes coffee ground in quality in presence of upper gastrointestinal bleeding which allows blood to be exposed to gastric acid, leading to the oxidization of iron molecules found within the blood cells.  In Edward's case, he was likely bleeding for one of two reasons:  either he had gastritis which is irritation of the lining of the stomach or he had something called a Mallory-Weiss tear, which is a small mechanical tear in the mucosal lining at the junction of the esophagus and stomach secondary to repeated vomiting

To put it lightly, Katie was beside herself and I was pretty concerned myself.  We considered going straight to the ER, but since our doctor's appointment was in 15 minutes we decided to start with that.  Our pediatrician was also quite concerned, but again he could not feel any evidence of pyloric stenosis on exam.  Furthermore, there were many other potential causes of Edward's symptoms, some serious and some not so serious.  So, he called the surgeon who we saw that morning and they decided to send us to the main hospital for an ultrasound that afternoon.

Katie dropped me off and I took Edward to Radiology while she ran home to get some essentials in case we were in the hospital all afternoon or evening figuring all this out.  I sat in the Radiology waiting room with Edward in my arms - he was getting pretty lethargic from all the vomiting and lack of nutrition.  And even though we had not fed him anything for a few hours, he spit up again all over me.  Dark brown stuff - the poor little man! His eyes had this glazed over look and he seemed so worn out.  "He spent 3 long months in the NICU only to come home to this!" I thought to myself.  I have to admit that was one of the lowest points for me throughout all this whole process.  Finally, soon after Katie arrived, they called us back into Ultrasound.  While we were waiting, I confessed to Katie that I was actually hoping for pyloric stenosis.  There were other possibilities that were more serious (intussusception or volvulus) or less treatable (such as reflux) and I was worried the ultrasound would be totally normal.  Then we would be left with this poor baby who seemed miserable, vomiting all the time and two parents who were equally miserable and close to wits end. 

Then finally, we got the results:  Pyloric Stenosis!  As strange and as counterintuitive as it seems, I was overjoyed!  We had a diagnosis! .........So now what?

Monday, May 16, 2011

All Babies Spit Up....

After being home for almost a week, my mom innocently asked "How much is Edward spitting up?"

 "None!" I happily replied.  And it was true.   The first five to six days at home, Edward did not spit up once.  He was still learning to take bottles and was not taking large volumes, but sure enough he had not spit up a single time.  In fact, throughout his entire NICU stay, I think he only threw up 2-3 times total.

We were overjoyed with our luck!  Then lady luck looked the other way.  Edward was pretty gassy and somewhat fussy after most of his feeds, but then he started to spit up.  Not a lot at first and not with every feed, but it was fairly consistent throughout the course of a day.  We started holding him upright for over an hour after every feed in case there was any element of reflux and hopefully decrease the amount of 'spit-up'.

One night, after a feed and holding him for about 90 minutes, we placed Edward in his bassinet next to our bed.  Ten minutes later, "BLEH!"  with vomitus going through the bassinet and onto the side of our bed.  It wasn't always quite that bad.  Mostly, he would take his feed, fuss for a little bit and then spit-up some white curdly stuff that wasn't very pleasant to smell.

Similar to the amount of breastmilk that he was actually taking in, these episodes of emesis were a cause of great discussion and angst.  I downplayed it at first, reminding Katie that 'all babies spit up,' which of course is true to some extent.  But despite repeatedly asking my opinion on various issues, Katie does not believe a word I say anymore....and I can't say that I blame her.  I have learned that it is impossible for me to simultaneously play father and physician.  Objectivity goes out the window when it is your own family.

Despite of all this, Edward still gained weight at our next pediatrician appointment!  In fact, he gained almost 7 ounces (nearly an ounce a day)!  Our pediatrician was thrilled and we were extremely pleased to have achieved such a significant weight gain.  But it seemed like we were killing ourselves to accomplish this.  Every feed was a battle and often ended in a change of clothes for Edward and one of us.  At the same time, the weight gain was so encouraging - clearly we were doing something right.

Then, week three happened....

Sunday, May 15, 2011

Where to begin.....

We apologize for the dearth of posts recently - having a new baby at home is slightly time consuming.  I am not sure if anyone is still following along, but figured we would send out an update just in case. many of you know, we brought the little man home 3 weekends ago.  It has been an absolute joy to have him home with us after such a long course in the NICU.  At the same time, Katie and I are first-time parents struggling with the adjustment of having a 'newborn' at home.  To put it lightly, we are a little nervous and anxious.  As many first-time parents before us have done, we scrutinize Edward's every move.  Every cough, burp, grunt, pee, poop, spit-up, feed, etc is carefully discussed and analyzed.  No stone goes unturned.  The combination of being first-time parents and starting off with nearly 100 days in the hospital has greatly skewed Katie's and my ability to determine what is "normal baby behavior" and what is pathologic.  This makes for many "interesting discussions" between the two of us.

To be honest, Edward left the NICU in phenomenal shape.  He did not require any supplemental oxgyen or any apnea monitors.  His only medication was a thoroughly disgusting multivitamin to be given only once a day.  As with many NICU babies, his biggest issue was feeding.  In the hospital, we had an attending neonatalogist, multiple nurse practitioners, ICU nurses, a nutritionist, a lactation consultant and a speech pathologist all helping us coordinate Edward's feeds.  Upon discharge, he was just developing his ability to take bottles, but enough so to be able to go home.  Once at home, his feeds were obviously up to only Katie and me.   A daunting task to say the least.  The basic tenet was for us to feed him every 3 hours or so and make sure he is making wet + dirty diapers regularly.  If we accomplish this, he should gain weight! Simple, right?  Well, Edward didn't make it quite that easy.

Week One
As previously mentioned, Katie and I spent the first week obsessing over our every decision and perseverating on the exact amount of breast milk he would take in with each feed.  We (read Katie) kept a strict log of his daily intake, recorded to milliliter.  Sometimes, he would take 30 mL, sometimes 45.  Then he would only take 20.  Then 40!  Then 15.  Then 45 again!  Back and forth, back and forth.  This variation caused great consternation.  Still, he seemed to be making wet diapers regularly, so we pressed on, keeping the faith.  Forty-eight hours after discharge, we had our first pediatrician appointment for a weight check.  Driving to the doctor's office, both Katie and I shared our trepidation of finding out if had gained weight and confessed a likely sense of failure if he had not.  

Once at the pediatricians, the nurse directed us to the intake area and had us lay Edward down to undress him on a scale ......a scale straight out of the 1890s - the type of scale with the movable weights across the top that looked about as accurate as throwing darts.  You should have seen the look on Katie's face.  In the hospital, a difference in weight as small as 5-10 grams could be detected.  Much to our relief, the actual, digital scale was nearby and the scale on which we were only functioned as a changing table!  Whew.  Then the actual weigh in occured.  I am not sure if any of you watch the Biggest Loser on TV, but as the nurse laid Edward, naked as a jaybird, on the digital scale and the numbers started calculating, I felt like we were on that show.  Seconds felt like hours, but finally the scale settled out and he had gained 15 grams (half an ounce)!  Not a huge gain, but more importantly, it was not a loss!  We were so relieved.  We continued on with our current plan and had another weight check 3 days later.  On that visit, he gained 75 grams (2.5 ounces)!  He was up to 6 lbs 13 ounces!  Again, another huge relief.  Maybe we were finally getting a hang of this whole parenting thing....then weeks 2 + 3 happened.

To be continued.....