Tuesday, June 9, 2009

Joey's Diagnosis & Surgery

Joey and his daddy on the day after Joey was born.

The morning after he was born (day 1), the on call pediatrician told me that she thought Joey had Down syndrome and ordered a preliminary karotype test. I was devastated by this announcement. For the next two days I asked anyone who saw him whether they thought he looked like he had Down syndrome. I also went back and forth in my head, analyzing his features, seeing it and not seeing it. I ultimately decided she had to be wrong... plain and simple… she was wrong. The morning after (day 2), the Pediatrician also decided that she had been wrong. After examining Joey again she came in and told me that she did not know why she had thought Joey had Down syndrome, as she was no longer "seeing it" when she looked at him. She apologized for being paranoid. I remember being so relieved. The relief was short lived, however, because Joey was still not eating and the nurses began to talk about sending him down to the NICU for evaluation.On day 2, February 10, 2009, Joey would latch onto my breast and fall asleep (again a preemie thing we were told). So the nurses brought me a pump and we decided they would try and feed him some expressed colostrom through a bottle. He took in a little but would spit up what appeared to be almost all of it. The nurses became concerned and told the doctor they wanted to transfer him to the NICU. The Pediatrician did not think that was necessary just yet so we spent a little more time trying to get him to eat both formula and expressed colostrum. At one point one of the nurses who was good at dealing with special needs babies because, I was told, she had a child with Down syndrome, was able to get Joey to take in an entire feeding. I remember becoming quickly annoyed with the suggestion that he had any special needs and informed the nurses that the pediatrician no longer thought he had DS. Her previous thought, that he might have DS, should not be a factor in his care.

The nurses ultimately prevailed and Joey was sent to the Special Care Nursery on day 3. Because he was still not eating during most attempts to feed him, the nurses put in a NG tube so that he could be gavage fed. But before the nurse fed him she used a syringe to see if anything he had been fed previously was still in his stomach. To our surprise, and dismay, it all appeared to be there. Everything we had managed to get him to eat for two days was still in his stomach. Apparently he was not digesting any of his feedings. The nurses informed me that this was not uncommon with babies with Down syndrome. As I had done with the nurses upstairs, I told the NICU nurses that he did not have DS. I informed them that the pediatrician had changed her mind and asked why they kept talking about him like he had DS. The nurse simply put her arm around me, her head against mine and said “oh honey…”

There was apparently no question in her mind that Joey had DS. Rather than question the diagnosis, they questioned why I had been so misled by our pediatrician. This was one of many times (but certainly not the last) that I would break down and sob uncontrollably over the course of the next few weeks. And for some reason, this information was always delivered to me when I was alone (either first thing in the morning before Tony could get to the hospital or late at night after he had gone home to sleep…he was coming down with a cold and I had insisted that he go home).

Despite having just had a c-section, the only time I spent in my room was to eat (which I had to do to produce milk), pump (again needed to do this to get my milk to come in) and get medication (another necessity so that I could make it downstairs to see Joey). I slept very little. Instead I spent most of the time that (Joey was in the NICU and I still had a room in the hospital) in a rocking chair next to Joey’s bed in the NICU rocking my baby.

On the night of, day 3, we now knew that Joey had not been digesting his feedings. I went back up to my room to pump while an x-ray was taken of Joey’s stomach. The neonatologist called me at about midnight to tell me that the x-ray had been inconclusive, but that an upper GI study would be done in the morning to confirm a blockage. They had also gotten the results from the preliminary karotype. I remember hoping desperately that she was going to tell me they had been wrong and that Joey was fine. That was not the way the conversation went. Joey did have Down syndrome. Alone again, I sobbed. There was no one to talk to about it at this time of night. Instead I dreaded the phone calls I was going to have to make the next morning, to my husband Tony, to my parents and my sisters…all of whom had been through the “we think he has it,” and “we no longer think that” rollercoaster ride with me over the course of the past few days.

By the next morning, I had collected myself. I told myself that the beautiful little baby I had been cuddling with over the last three days needed me and I was no good to him lying in the fetal position sobbing in my hospital bed. With that resolve, I cleaned myself up and went back downstairs to the NICU to fact the next set of challenges.

The upper GI revealed that Joey had an intestinal blockage. Joey had apparently tried to tell us there was a problem well before he was born. At my 32 week prenatal appointment the doctor became concerned that I was measuring large and sent me in for an ultrasound to measure the amount of amniotic fluid. The results came back normal, but on the outer limits, and anyone who saw me around this time thought I was huge. In fact I recall a complete stranger coming up to me while I was waiting for an oil change on my car the second week of January. I had just sneezed and rather than the obligatory "bless you" she exclaimed "don't do that again... I am afraid that baby is going to come flying out!" I was huge..... In retrospect, the extra amniotic fluid was likely due to the fact that Joey was not digesting it, as most babies do in the womb thereby decreasing the amount of fluid. At my 34 week appointment the doctor discussed the increased fluid levels and had ordered closer monitoring of the baby. Had I not gone into labor I was to start more intense fetal monitoring that Monday. Joey would have no part of that. His little nails were so sharp when he was born I almost wonder if he had been scratching at the membrane, trying to get out, so that we could get him the help that he needed.
At four days old Joey got the help that he needed. He had surgery to bypass and correct a blockage in his duodenum. When the surgeon was in there he also discovered that Joey had malrotated intestines which was corrected. The surgeon also removed Joey’s appendix and a small pouch in his intestines called a meckeles diverticulum. The surgery took about five hours. It was the longest five hours of my life.

Joey the day after surgery after he was extubated. I did not want any pictures of him with the machine breathing for him.

It would be a few days before I could do anything other than hold his hand and kiss his head. I remember thinking that I would not wish this on my worst enemy. There was nothing worse than not being able to hold your newborn baby.

More to come on Joey’s recovery and the two week stay in the NICU…


  1. I'm so sorry you had to get that diagnosis all by yourself. I am amazed by your strength and your ability to pull yourself together so quickly. Joey is so luck to have you as his mom. And what a little fighter Joey is! He is amazing and patient as everyone in the hospital tried to figure out what was going on!

  2. Sounds like a rough, emotional start. So glad you finally got the help he needed and you have a beautiful boy regardless of the number of chromosomes he has :-)

  3. wow, you all have been so strong!