Out of nowhere...

After an amazing evening with family and friends on Monday, C and I went home and called the NICU to check in on our boys. It was 12:30 am on Tuesday. The nurse said Fisher was ready to move from his incubator to an open bed and that Truman had tolerated his feeds and was doing well. We went to sleep with smiles on our faces.

Monday morning at 8, Dr. Diacovo, the attending neo-natologist phoned to tell us that Fisher had, overnight, fallen ill. We sped to the hospital.

Fisher presented with a series of very troubling symptoms. He was pale (usually pink), limp (his arms and legs would fall freely when released), and x-rays showed that his distended belly was at least partially a result of 'free air'. Free air is a sign that his tissue in his bowel has died and the bowel itself has perforated. The perforation releases air into the body, but along with the air, things that should normally be expelled through the rectum can leak into his abdomen and send him into septic shock. The perforation, which was the root of the problem, becomes secondary to the overwhelming shock that the baby's body undergoes. All of these things have happened to our boy.

The remedy, if there is to be any, is surgical intervention to remove the portion of the bowel that has died. We were forewarned that this intervention would not necessarily cure him; his situation may be unsustainable and incurable. The bowel may be either completely dead or such a large percentage of it may be dead that his intestinal tract becomes, as the doctor said, "incompatible with life." Somehow, the euphemisms that are intended to mollify are instead staggering.

The surgeon, Angela (whose last name is some beautiful hyphenate that I can never recall), explained that their best guess at a diagnosis, pre-operation, was necrotizing enterocolitis, or NEC (http://kidshealth.org/parent/medical/digestive/nec.html). It is a disease of unknown causes, one that devastates the bowel and kills the intestinal tissue. Her other guess was a disease called PUSI. I don't remember what it stands for, but the acronym was enough to force C and me to suppress a sophomoric smile.

Surgery revealed a different diagnosis. Fisher had a volvulus, a twisting of the intestine and the attached blood vessels. As a result of this twisting, blood supply to the bowel is completely cut-off. The "insulted" bowel was removed and marginal bowel was left in the hope that it would recuperate. His wound was left open so that doctors could have easy access for a 2nd surgery, to be performed when Fisher is stable enough to undergo anesthesia. He is hooked up to a ventilator, he has blood transfusions coming in from several different lines, he is on epinephrine, he is swollen nearly beyond recognition, but you can see his little body struggle to survive.

The prognosis is not good. The doctors (who have been beyond respectful, competent and patient) have begun, consciously or not, to change their language from "the surgeons are going to..." to "the surgeons are willing to...", an indication that they will perform further surgeries in spite of their lack of faith in Fisher's ability to recover. Through his open wound, they can see some of his remaining bowel, and it appears dead and black. If his intestines do not recover, he will not live. Though some signs improve, those signs are so superficial that the doctors are not convinced that he'll make it. We're having conversations about "if he survives" and "quality of life." Less than two days ago, we were talking about taking him home. Now we're plummeting through worse and worse scenarios. It should not surprise us that the forces of the universe, if such things exist, do not give us a second to catch our collective breath, but we are nonetheless surprised.

Fisher's sudden illness led doctors to examine Truman, just in case he might have something similar going on. In a horrible twist, he too had become unwell. His illness, however, has been intercepted at a much earlier stage, so he's been treated with antibiotics and a blood transfusion and appears to be recovering. It may be the case that, without Fisher's illness, we would never have examined Truman so closely and he too would have become extremely ill. Fisher's illness may have saved his brother's life. Truman is back on CPAP (breathing help), has an IV, is in an isolette, but he's kicking and crying and pooping. Still, hooked up to all that stuff, it's hard not to think that we're back at square one.

And now, we wait. C's mom is here and her dad and sister will fly in tonight. My whole family came by last night and will return today. The doctors and nurses have been unbelievably kind, coming into our room and consoling us, even crying with us. The kindness that we show each other is one of the few things that keeps this waking nightmare from overtaking us. We are loved so well, and we love our sons.

Before Fisher went in for surgery, we had him baptized. A friend of mine once said that though he was unsure of god, he had learned to believe in prayer. Now I know what he means.

I have never before felt actual grief. There are times I cannot bring myself to stand or speak. I have the most amazing wife, and I thank God for her.

Thank you for your thoughts and prayers. My wife, our parents, our siblings and our sons thank you. You pick us up and help us pick one another up.

Much love to you.