This article is a continuation from Premature Confidence – The Long Fall Down

After the crying stopped, neither Lori or I could sleep, so the research began.

The doctor told us that the nurse noticed a large discharge of bright red blood in Caitlin’s diaper, and after his examination, this is what he concluded to be the cause:

“Necrotizing Enterocolitis (NEC) is a medical condition primarily seen in premature infants, where portions of the bowel undergo necrosis (tissue death).” -Wikipedia

“Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants.” -Kidshealth

“There are likely to be many causes, but a lack of blood flow to the intestine and infection are probably critical to the development of NEC. Low blood pressure [remember - I told you to tuck this fact in the back of your mind earlier], decreased blood volume, or decreased oxygen in the blood at birth, have been suggested as possible causes.” -The American Pediatric Surgical Association

“The mortality rate ranges from 10% to more than 50% in infants who weigh less than 1500 g, depending on the severity of disease, compared with a mortality rate of 0-20% in babies who weigh more than 2500 g. [Caitlin was in between these two levels] One study compared mortality rates for term versus preterm infants and reported rates of 4.7% for term infants and 11.9% for premature babies.” -eMedicine

When Lori and I read that this disease could be fatal, panic began to set in. It’s not that the doctor didn’t tell Lori it was serious on the phone, it’s just that we were exhausted and in a state of disbelief. Caitlin was supposed to be coming home in a few days, now she was fighting for her life.

We didn’t know what to think or do, but the doctors requested that we give them some time to conduct more tests and observe her for a few hours, before we came in to see her. The next six hours were excruciating, and it was hard not to think about the worst case scenario.

When we got to the hospital, Caitlin was asleep in a different kind of incubator than the day before. She definitely did not look like the same vigorous baby. Her skin had a yellow hue from jaundice, and her extremities were slightly blue.

As soon as we walked up to the bed, several of the nurses came over to try and comfort us. It was a very overwhelming sight for both me and Lori…especially Lori. I’ve never seen her cry so much as I did that day.

Shortly after arriving, the doctor on duty came over to speak with us. We knew it was serious when she pulled up a chair and asked us to sit down. I could feel my hands sweating and my heart racing.

The first thing the doctor did was take a moment to comfort Lori, which I thought was very nice. She didn’t launch right into a clinical explanation of what was happening; instead, she told us that this was very serious but she had seen the disease before and felt comfortable with the resources at the hospital. They had not seen a case of it there in more than a year. Another one of the neonatalogists had direct familial experience NEC as well. If things got worse, then two nationally acclaimed hospitals were within a one hour drive with several intestinal specialists and surgeons on staff.

The first thing we wanted to know was how serious was very serious, as it related to the research we read online. The doctor said it was a severe infection that had spread throughout the intestines and colon. X-rays indicated that Caitlin’s intestines had not yet ruptured, but there was a fair chance that they could. Even the slightest worsening of her condition would warrant an immediate transfer. [I could feel the panic within beginning to switch to a different level]

The next thing we wanted to know was why it happened. The doctor said that there is no way to tell for sure, but it likely started with the drop in blood pressure and blood oxygen levels that occurred shortly after Caitlin was born. Then, when the feedings started, the intestines could not properly function and gradually degraded into a condition of necrosis. Once the condition became infected and irritated, it caused the blood vessels in the intestines to break and bleed.

What is the treatment for her condition? The doctor said that they had to immediately stop all feedings and get her back on intravenous nutrition. A tube had to be run through her nose down to her stomach to remove air, intestinal gases and backed-up bile. She needed to be placed on five different antibiotics. The cannula had to be reapplied to ensure proper blood oxygen levels (for at least a few days).

She needed to rest and remain as still as possible with no holding, stroking or poking. And, they needed to do a minor surgical procedure for a peripherally inserted central catheter (PICC line), but it was enough of a thing that we needed to sign a consent form to have it done. To top it all off, Caitlin’s jaundice had now spiked to a level of concern, so in addition to tubes and wires she now had to have a bili light and wear a mask.

So what could we do to help? Don’t panic! Hold her hand and pray. Call our family and friends. Ask everyone we knew to send prayers and positive thoughts to our little girl.

The last thing we wanted to know from the doctor was how long the recovery process normally takes. Of course, with preemies, every case is different, but she said that we should expect several weeks, assuming she did not need surgery. She would be on antibiotics with no feedings for at least 10 days, and then the feedings would be reintroduced very slowly with the hopes that the problem does not reoccur.

Even if the NEC doesn’t reoccur, Caitlin would not be home free. The doctor said severe cases, at times, require post-event surgery, due to strictures forming in the intestines.

After taking all of this information in, the doctors and nurses left us alone with Caitlin for a few minutes. We stood on either side of her bed, held her hand, and then, we both cried. I don’t cry very often, but I couldn’t hold it back. It was overwhelming.

Lori and I spent the next few hours taking turns calling people while the other held Caitlin’s hand. The more the day went on, the more puffy Lori’s face got from crying.

Around noontime, the nurses asked us to leave for a few hours, so that they could do the surgical procedure and insert the PICC line. It was really hard to leave her again.

Later that afternoon, we got another phone call from the doctor….

I’ll post more about our story soon. In the meantime, feel free to get caught-up by reading the Related Posts below and see pictures of our baby girl Caitlin Arielle.

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