Samuel Frank
Sam was born at home in April, 1996, a planned homebirth. Everything went as planned and there were no complications.
We spent the next three days at home, getting to know Sam and just relaxing. I was very connected to him; I could tell when he was going to urinate when his diaper was off, I woke up before he did to feed him, and on the third night I woke up suddenly, thinking "He's not breathing!" I laid my hand on his back and he took a deep, shuddering breath. I'll never know for sure if he'd stopped breathing then or not.
The next day while I was nursing him, I noticed he looked very dark all of a sudden. I pulled him away from my breast and patted his back, asking "Sam?" and he looked normal again. I didn't know what to think. A little while later, I laid him on the couch so I could run to the bathroom, and before I got there my husband called me back in. He was holding Sam, who looked blue again for a second, then was normal. When I talked to my midwife (Stephanie) that night, I was a little afraid to mention it. He seemed to be doing so well otherwise, it was hard to believe that this was anything serious. Stephanie was alarmed, but couldn't come herself because she'd been exposed to chicken pox, and was afraid of passing it to the baby, but she sent Mary (another midwife) and an apprentice. They examined Sam and listened to his heart for a long time, but couldn't find anything wrong. They recommended we take him to the doctor in the morning. Then, while I was nursing him, he did it again. I patted his back again and called his name. He turned pink again all on his own, and never went limp, just stayed all tight with this intense look on his face. Mary was clearly concerned; we discussed taking him to the emergency room, but we hadn't planned ahead well and didn't know if our military insurance would cover it. We decided after much consideration to take turns staying up all night with him, and to go to the emergency room if it happened again. The next morning I called the clinic on base as soon as they opened and asked them what we should do. The man was very mad at me, he said I shouldn't have "risked my baby's life over money!" He told us to take him to the Children's Hospital immediately. We took Tommy to a friend and headed for the hospital.
They took their time about things, of course. First a resident saw him, and said there didn't seem to be anything wrong with him, and then the attending came in. I was nursing Sam, and the attending was in the process of blowing us off and sending us home when he did it again. Although I was pleased that the doctor was now taking us seriously, I broke down when he grabbed Sam from my arms and ran down the hallway, yelling orders. I will always remember how completely helpless I felt. It took Sam much longer this time to start breathing again, I believe because the doctor scared him so bad. He even peed on his tie, which amused me and the nurses much more than it did the doctor.
We spent the whole day in the emergency room while they ran tests. They did an x-ray, which was quite horrible. They had to
smash him into this brace, to keep him in the right position, and he
screamed hysterically the whole time. They took lots of blood, ran
some tests on his heart, including an ultrasound, which we pioneered
a new technique for. The ultrasound technician wanted him on the
table, but he was sleeping so peacefully in my arms, he decided to
try, and was amazed when Sam slept through the whole thing. He
decided it was actually easier that way, because Sam barely moved.
Everything was coming back normal, except that he was mildly
polysythemic (too many red blood cells, or his blood was a little
thick) and he was a bit jaundiced and dehydrated. I think he was
only dehydrated because they refused to let me nurse him the eight
hours we were there. Then they moved him to the NICU, where I was
finally given a breast pump. They did a saline transfer for the
polysythemia, even though he wasn't at a level they usually treated.
He had an I.V. and all the monitors on him, and he looked absolutely
miserable.
I wasn't allowed to nurse him very often; they gave him
IV fluids instead and my breastmilk through a tube in his nose.
They moved him to a room where he had a roommate, and he had to
stay under bili-lights for the jaundice, even though it wasn't
really bad enough to need treatment. They basically didn't know
what was wrong with him, so they treated him for anything they
could think of. His roommate was bottle-fed, and his mom was only
allowed to feed him every four hours, so every three hours we had
to listen to him cry for an hour. The mother was so jealous that
Sam got breastmilk, either through nursing or the tube, every time
he cried, while her baby had to settle for a pacifier. They decided
Sam had quit breathing and turned blue due to a combination of the
jaundice, the polysythemia, being dehydrated, and because he was a
"preemie," at 36 weeks gestation.
Sam went home, five days after we'd first showed up. He was on an apnea monitor. The next evening as we were getting ready for bed, my husband was carrying him on his shoulder, burping him, and he quit breathing and turned blue again. I cried all the way back to the hospital. This time they put him on a ward. They said he had reflux, that every time he ate it was coming back up and blocking his airway. I thought they were nuts. He had never so much as spit up. I stayed with him day and night, again. I slept in a waiting room across the hall from the ward. My husband brought Tommy to see us every day. They did a barium swallow test, where they x-rayed him after drinking a bottle of this barium stuff to see if it came back up. It came back up, so they started giving him medications to control the reflux. By this time, he had lost an entire pound since his birth one week before. When they put him on the medications, he gained back his birth weight, but then stopped. He didn't lose weight, but he quit gaining entirely. The doctors started talking about sending him home on the medications. I was determined not to take him home until I knew for sure what was wrong with him. I could see him dying, right before my eyes, he was giving up a little at a time. My midwives contacted another doctor who specialized in pediatric gastroenterology, and she recommended we do a different test, a ph probe, to determine how bad his reflux was. If it showed that it wasn't that bad, they would have to look for a different reason for his apnea. They stopped giving him medication and did the test, which measured the ph level in his esophagus for 24 hours. When the results came back, they said it scored over 800, which meant he was refluxing almost constantly. They scheduled him for surgery the next day. I was horrified. I wanted to know why we couldn't wait for him to outgrow the reflux, like most babies do, and I was shocked to discover that he had no chance of living that long. He would die of pneumonia, from all the stomach acid in his lungs, or get an infection from the stomach acid eating away his esophagus, or would simply reflux so badly one day that he couldn't get it back down in time. We met the surgeon who would do the procedure, called a Nissen fundoplication, and I hated him. He was so jolly and nonchalant, told me he did this kind of surgery "all the time." I wanted to scream "but not on MY baby!" He came in and patted Sam's head and told me everything would be fine. I thought, "that's what they said after my ultrasound, too!" I was so angry at him for being pompous and self-assured. I felt like he was tempting fate. I knew he couldn't possibly be right all the time.
The day of the surgery, I was like a zombie. I wasn't sure if the fact that I could see him dying was a premonition, because he wouldn't make it through the surgery, or if it was because of the reflux killing him little by little. They let us go with him to just outside the surgery area. He slept patiently on his crib, and I kissed him for the fiftieth time that morning, and held onto my husband as they took him away. They gave him an epidural for the surgery, so that they would be sure he wouldn't feel anything and wouldn't have to rely on gas anesthesia to keep him unconscious. Scott and I waited in a room for surgery parents. It was the longest time of my life.
I felt...well never mind, I can't describe how I felt. Finally the surgeon walked in, smiling, and I was so grateful to him for that. As much of a jerk as he had been before, he knew that I would know my baby was fine the minute I saw him, if he was smiling. I thanked him and thanked him, and we went to the recovery area, where they finally gave up trying to make me wait any longer and let me go sit with him. He had all the usual wires I'd grown used to seeing, and there was a thin cut, stitched and covered with tape on his stomach. Right below it was a plastic "button," that led to his stomach, and it had a tube coming out of it to release gas from his stomach, because he could no longer burp. I kissed him gently, crying again without even realizing it. I wanted to kill the surgeon. It was totally irrational, but the mother tiger inside me could only think that he had taken my whole, beautiful baby from me and cut him, and hurt him, and I wanted to kill him. The logical mother in me wanted to kiss him. She was so grateful that he had known just what to do. I was in shock, both from the stress of the day and the duality of my feelings. I let the nurses convince me to go home "and rest," since I couldn't nurse him anyway. They said he didn't need me there with him. When I showed up the next morning, after getting about two hours of broken sleep, I was told he had cried all night. I was so horrified, so mad at myself for letting them talk me out of following my instincts. They finally realized that he had the wrong tube in his button, and it wasn't letting enough gas out. I felt guilty anyway. I never left the hospital without him again. They sent him home three days after his surgery, instead of the week they had predicted before the surgery. He had already started gaining weight, and I could see him fighting again. He wasn't dying anymore.
Sam's Button
Sam did have some trouble with gagging & choking while
nursing for a while, but that soon stopped & he hasn't done
it since. He never had to be fed through his tube; we only used
it to "burp" him. Each time he nursed, I would lay him
down afterward and put a tube in his button, and any gas he had
would flow out. Usually some milk would come with it! It seemed
strange at first, but it wasn't long before it just part of the
routine, like changing his diaper.
At 3 years old Sam is a very healthy child. He cannot vomit,
and instead has dry heaves the few times he gets sick. He rarely burps. He has two small
scars on his belly, one from the surgery and one from the button,
which was removed when he was around 9 months old. 
(This picture was
taken before the hole was completely healed, less than a week after
the removal.) The button was removed in the pediatrician's office;
he simply pushed a long stick in the button to stretch it out and
pulled it free. It did not seem to be that painful to Sam.
Update on Sam's fundoplication
I asked Sam if I could put these pictures of him on the computer for others to see, so they will not be as worried about their babies. He smiled and said it was okay.
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