NEC – Necrotizing Enterocolitis for Noah

We got a call yesterday from the hospital that Noah wasn't tolerating his food again and that they had taken three X-Rays throughout the day, all pointing to him having NEC (Necrotizing Enterocolitis).  Essentially, Necrotizing means that your tissue is dying, and Enterocolitis refers to the inflammation of the small and large intestine.

Noah's large intestine is currently inflamed.  The doctor showed me his latest X-Ray, taken this morning.  I could see quite clearly the spot on his large intestine, toward the right side of his body, that was inflamed.  While the blood, urine and feces cultures won't definitively come back for a few days, the doctors are treating him as if he does have it.  Waiting can be deadly, so I am 100% behind their decision.

They've stopped his feeds and have him on medication to battle the synergistic bacteria that can often occur with NEC.  They say, based on the X-rays he appears to have the less serious, non-surgical form of NEC right now.  When Owen had his scare five weeks ago, I spent a few hours reading online about this disease and I could feel my hairs turning gray in my beard.  It is serious stuff and my heart goes out to every parent who has gone through this with their child.  Many infants with the surgical form of this disease end up losing a large section of their intestines.  Many other infants have it recur and lose another section, and some (too many) infants die from this.  I don't want to minimize what any of these parents and children have gone through.

I am having trouble being anything but clinical while writing this.  It is a bit scary and it's more than a bit emotional.  We are quite lucky in that they've begun treating it immediately, and seem to have caught it early.

NEC affects 2-5% of preterm babies that are cared for in the NICU.  It generally affects babies weighing less than 1500 gms.  Typically, it also occurs within the first couple weeks of birth, and generally after they've begun to feed on breast milk.  Noah is at over 1900 grams (4lbs 6oz), but since he is technically only 33 weeks gestational age, he is still quite premature.  As the doctor said, he should still be sitting inside Mom and as such, his bowels are still quite premature, and subject to infection.

He looks good, if not a bit cranky.  But his color is there and he is fairly active.  He was quite wide-eyed while we were there tonight, and seemed to enjoy the touching back and forth with Nikki and myself.  In fact, I don't recall him previously being that wide eyed and engaging. 

The cause of NEC is generally unknown.  In fact, they had asked to have our babies participate in a NEC study shortly after their birth, so that they could gather data and help find the cause.  The doctor told us that one theory is the baby's intestines may suffer a temporary loss of blood flow and oxygen, leading to the affected area dying off. 

The point is that we may never know the cause, and if blood cultures come back negative, they will still treat him as positive based on the X-Rays and his stomach looking distended and feeling tender.  I know that he seemed to be quite uncomfortable when Nikki was changing his diaper on Friday.  Nikki is really good at changing diapers already, and so it struck us as unusual.  She also noticed his distended belly, which I initially attributed to his hernia (he does have one and will need surgery before he comes home), but thankfully, she asked the nurse over to look at it.  I think that is what precipitated the X-Ray and fortunately, catching the issue early.

I have some better news about our other two children.  Grandma Forness got to hold Owen finally.  He was quite alert the whole time and I know my mother appreciated the opportunity to bond with her first grandson. 

Grandma Karen and Owen

Tonight we had the opportunity to hold Bella.  She's had a rough road back.  She came off the ventilator late last week and has been screaming bloody murder since.  As a result, she's expending alot of calories and has lost a few ounces.  She's now down to 2lbs 12oz (1231 grams).  She was quite relaxed when Nikki and I held her tonight but she really hates the mask over her nose and the head gear.  The nurse said, were it not for her low body weight, she very well could have transitioned into a crib within the next week.  She's able to maintain her body temperature without assistance, which is a huge sign, and she will start sprinting again in a few days.  But they like to see the babies weigh at least 1500 grams, and ideally 1800 grams before they put them in the crib. 

So, she is actually getting the lion-share of the breast milk now, especially since Noah won't be eating for at least a week.  Hopefully she'll learn to relax a bit and save some of those calories.  She really looks tiny, and one of the nurse's in the room affectionately calls her Peanut. 

Anyway, that's the update for the past few days.  Hopefully we will learn something more about Noah's condition soon.

Till then, thank you for reading.

- Papa Charley