To the brink...

This is not easy to share and is not a fun story like many of the rest. We've managed to become quite attached to our little guy over the past three weeks so as can be expected were panic-stricken in our mad frenzy to the emergency room the other night.

Things had been going really well. RJ had been putting on weight at about 1oz per day, and feedings started stretching out to 3 hours at night so we managed to get enough sleep. The balance of work and life is of course challenging, we have good friends who have long attested to that fact, but we finally got to experience it first hand. Despite the little nuisances, we were in a place in our life to enjoy the warmth of having a small baby laying on our chest, the tight grasp of five little fingers wrapped around a pinky, and the curious gaze that can only be interpreted as a cross between awe and admiration. We lucked out with an incredible kid too. RJ is very chill, he lets us know when he's hungry but doesn't find any reason to whine about it. He was starting to mimic our expressions, finding greater control of his hands and moving them to his mouth. We were parents and loving every minute of it.

Monday was a bad day.

Monday morning something out of the ordinary happened, RJ had a spitup. We had not yet had to deal with this right of passage in parenthood but were not too worried. There was no fear of choking and it was small and wet. I headed off to work and Cheryl was set for her daily routine of feeding and caring for the cherub faced boy. Unfortunately however, the vomit did not stop. When I returned home from work Cheryl was quite upset. The day had turned into a routine of crying from hunger, feeding, puking, and then more crying. The other night we had a question about the Hep B shot so we already had the pediatric offices night number on hand. Giving details over the phone of what was going on the nurse was not too concerned, but given the description of yellow vomit being spitup two hours after a feeding, she recommended going to the emergency room at children's hospital in Oakland for fear it was bile. We remarkably calmly packed up the car and our precious child to drive to the hospital around 11pm.

A busy ER had us waiting for awhile before being seen. The consensus was that our dirty burp rag was bright yellow, the color of breast milk, and not the neon yellow of bile. They examined him and ordered an x-ray to check for a blockage. Everything looked fine and he managed to keep a feeding down while at the hospital so we were discharged around 3:30am and drove the hour home. The recommendation was shorter feedings and to keep him upright to avoid reflux. We were relieved that we over-reacted and that things should be better tomorrow.

Tuesday was worse.

Already sleep deprived, Tuesday started out ok with a few good feedings. The word of the day was fraught, ominously suggesting what was to come. We had a follow-up appointment with the pediatrician in Livermore, and after feeding him in preparation he vomited again (a lot). The pediatrician inspected the rag and thought it was possible he had a bug but that he should get better. He was still wetting diapers and everything but noted that if things got worse than he was during the day that we should take him back to Children's Hospital. Poor Cheryl hadn't had more than 20 minutes of sleep at a time in like 30 hours, and I was only slightly better at getting a 2 hour stretch. When I got home from work, Cheryl was clearly worn out so we figured we could tap into our pumped milk stash so that Cheryl could get a 6 hour stretch of sleep. We could then switch off at that point. RJ broke me after 90 minutes -- he was crying uncontrollably. We were trying to limit the feedings to avoid reflux and he was clearly angry about being hungry. I fed him a little bit more every 20 minutes or so but it was not enough. Sleep deprived, tensions high, he started vomiting. He then was hungry again, so I warmed up some more breast milk. He took it down, waited 15 minutes, and then spit up even more before crying again. I had to wake up Cheryl, things were worse. We were scared, he had a small mucus filled poo earlier in the day but we hadn't had a wet diaper all night. Too delirious from lack of sleep we barely made the midnight drive to Oakland.

Wednesday was awful.

After some quick checks, they decided we should be admitted so that RJ could get IV fluids and some blood tests. We were also set for an ultrasound to check his abdomen for blockages but the tech wouldn't be in until 8am. His tiny little hand was wrapped up with tape and various plastic cups to keep him from knocking around the IV needle they had to stick in his tiny little hand. We were told not to feed him while waiting for his ultrasound in the morning. We were taken to a room probably around 3am and Cheryl was provided a pullout cot next to the crib. Only one parent is allowed in the room, so I had to have my own restless night in the parents lounge down the hall. I've found that when I close my eyes all I can see is his little face and the expressions he makes. Even when waking up to go for the ultrasound and doing a stretch, yawn, and head roll reminded me of the exact maneuver the boy does when he wakes up. I just found myself hoping that I was the one experiencing the discomfort and pain so that he could be alright.

Pie what?

The ultrasound was positive for Pyloric Stenosis. We were told that we would be taken back to the room and a surgeon would come by to give us more details about the surgery. Yes, our baby, our 3 week old baby needed to have surgery. What if there are complications? This was serious, not just a bug. It is a very real possibility we could lose him. These and many more fears raced through our mind as we held each other for comfort.

The resident surgeon stopped by after a few hours to tell us about Pyloric Stenosis.
The condition is an obstruction of the muscle that controls the flow of food from RJ's stomach to his lower intestines. The pylorus muscle becomes swollen and since the milk cannot pass it comes back up. This only further aggravates it until no food can pass. For somewhere between 1 and 4 of every 1000 babies this can happen somewhere between 3 and 8 weeks -- just when they are most vulnerable.

The surgery was considered urgent, so we were put on the schedule, but not an emergency, so we didn't have a time. The waiting begins. For the next 10 hours we had to sit in a room with RJ screaming. He was hungry, looked at us pleading for food, and there wasn't a damn thing we could do. It was an agonizing experience, one I wish upon nobody. He was on an IV with fluids and nutrients, but that did nothing to calm our panic or his instincts.

Sometime during that ordeal we met the surgeon, Dr. Cartwright. Fortunately we felt comfortable with the woman who was tasked with saving our baby's life. She explained exactly how the procedure would work. With laparoscopic surgery they would go in and cut the pyloric muscle. It would heal and everything would be fine. The success rate is very high and the recovery time very low, expected to be 24-48 hours. We were mentally relieved but still emotionally strained.

The strategy for recovery is to ramp up the feedings, and only when a feeding is tolerated will the quantity be upped. So that meant 1oz pedialite, wait 2 hours, then another 1oz. Then it moves to breast milk with the same thing. After two consecutive successful feedings we could up the quantity to 2 oz, and so on.

The Cavalry

We were optimistic going into the surgery all things considered. Though not as important as his health, the surgeon suggesting that Cheryl and RJ could fly to Buffalo just a week later as reassurance that things would be ok. Despite this prognosis, Cheryl's mother and sister managed to book flights to come out. We told them it wasn't necessary and everything would be fine, projecting more confidence than we honestly felt but all the same they both had flights on Thursday.

Barely Baby Steps

Thursday morning RJ slept and refused feedings. This concerned us since he was expected to recover quickly. It also was a contrast to the previous three days of what felt like prolonged starvation. Later in the day he finally started to take a feeding here and there, but we couldn't advance past the 1oz benchmark. Being able to differentiate a spitup and a vomit is difficult, and then to quantify the vomit to determine whether it all came back up is even more challenging.

Friday things did not fair much better. He was finally able to keep down the small feedings, but as we approached 2oz the vomit resumed. Late in the day Dr. Cartwright was still surprised by his lack of progress and so decided to start medication. He was given a baby sized regimen of Atropine which was supposed to dry up his mucous and relax his pyloris muscle, which might have been tight from surgery.

Saturday morning we were still struggling with keeping feedings down. We were concerned because as days passed the amount of milk Cheryl could pump was decreasing. What if the diagnosis was wrong? Could there be something else obstructing things? Might we be heading toward GERD, a scary sounding intestinal issue that could affect him the rest of his life. What if he's allergic to breastmilk? Is that possible? He ate the last of what we had pumped and promptly vomited it up. He was still hungry, so Cheryl put him to the breast this time.

This worked. He was able to keep the feed down, so we mentioned it to the surgeon who said to go with it. He continued to vomit every other feeding just about, but he started to keep a few down. Wary and tired after four days of projectile vomiting and hospital accomodations there was a glimmer of hope we might be able to go home.

Discharge

We dealt with a lot of baby discharge this week, but this was the good kind. He kept a few feedings down in the evening on Saturday so if he kept one more down we might be able to go home. His next feeding was for 8pm so we eagerly watched the clock for two hours hoping the wide awake RJ could stomach the feed. He only had a small spitup so success. He weighed 6 pounds and 9 oz at discharge. The surgeon admitted that it was up to us what we wanted to do and she probably wouldn't have let us go if we didn't have our own NICU nurse for support. Despite the optimism of going home, his being back under his birth weight nearly four weeks later was demoralizing. Fortunately, getting back to our home environment seemed to do the trick. Saturday night he vomited up his initial feeding, but through the night he managed to keep a few feedings in a row down. Things snowballed from there and for his Monday checkup with Dr. Cartwright he had gone nearly 12 hours without vomiting and managed to gain 2 ounces. He was still only making one wet diaper per day which concerned us.

Tuesday night, one week after rushing to the ER we had what seemed like a content RJ who was putting on weight, hadn't vomited in 24 hours, had made a big poo in the morning and was wetting diapers more frequently.

We are very thankful to the good folks at Children's Hospital and to Grammie Carola and Auntie Amy who helped us bring Reed back from the brink.