Saturday, December 6, 2008

The NICU

The doctors in the Emergency Room call up to admit Bean.  There's room in the Neonatal Intensive Care Unit.  I carry baby Bean and a nurse and assistant each pull monitors beside us.  Along the way the nurse comments on how very rare it is for an infant to be admitted to the NICU from the emergency room.  Most infants come directly from other hospitals.  Once we arrive to the NICU floor, we are greeted by a large team that whisks Bean away.  

Jay and I were then ushered aside for the NICU orientation.  It is about 2 in the morning.  While the receptionist goes over the ins and outs of the NICU I can hear Bean crying over the intercom.  My heart just about breaks.  It is a terrible thing being unable to comfort your child, not knowing what exactly is going on, and being so helpless to do anything.  

Finally we are allowed back.  He is in an isolation room.  It's a room with glass on one side, walls on two others with a windows looking outside and a sliding glass door on the fourth side.  He is placed there since he came from home and they don't know whether he carries any infections or not.  When we enter, there is a crowd of people by his bed.  Bean is undressed down to his diaper and the warmer is turned on.  The nurses have started an IV of insulin, he is wearing a nasal cannula for oxygen, they have inserted an artery line through his umbilical stump, and they are attempting for the second time to place veinal line also through the stump.  Bean is very distressed and is crying and flailing wildly.  This is the most animated we have seen him in two days.  Jay once again stays with him.  He offers Bean his thumb to suck on.  I am unable to stay very composed, so I excuse myself to a rocking chair just outside the room.  I rock and silently weep.  A nurse taking care of another infant sees me and compassionately brings me a glass of water and some tylenol for my pounding headache.  

The line is inserted and they call radiology to see that it is placed correctly.  Meanwhile his doctor, a Fellow training in neonatology beckoned us to a room.  Dr. Z gets some family and prenatal history.  The history is pretty mundane.  My pregnancy was very healthy and all of the tests came back normal.  Likewise the family history is without much note.  There is some type I diabetes but no diabetes in infants.  The doctor then explains that she's never seen diabetes in an infant before, but she has done some quick research and it looks like Bean has what is called neonatal diabetes.  This is different from type I or type II.  There is a genetic component and depending upon what happened it could be permanent or transient.  If transient, it could disappear within a year likely much sooner.  This is the first bit of good news that we have heard all evening.  However, it is not possible to clinically diagnose which type he has so we will have to wait and see.  Dr. Z is extremely kind, and I am forever grateful for her compassion in the wee hours of that morning.  Jay and I were both quite shell shocked.  Right now the plan is to continue the insulin until his glucose reads below 200 mg/dL, at which point the will stop the insulin allow him to eat and see what happens.  

Since there are no beds, they offer to let us rest in the visitor's room which has 1 couch.  Jay beds down on the floor while I track someone down to ask about pumping.  My breasts are two hard rocks at this point.  A nurse is snagged who grabs a pumping kit and shows me where the room is.  I've never used a hospital grade pump before and she explains the operation and fine points of pumping.  Left alone I pump 8 ounces of milk easily which I label for Bean and head to the freezer.  One the way I hear, "Fay!  What are you doing here?"  I look over and all I see are a pair of eyes.  The rest of the woman's face is covered by a surgical mask and hair covering.  My mind was elsewhere and I didn't recognize her at first.  She is my neighbor!  In addition we both work with a group of girls at church and sometimes combine our groups for activities.  She does not work in the NICU, but had just come up from surgery with a patient.  I explain that Bean has been admitted.  She is finishing up paperwork and I drop off the milk.  I return to the visitors room where Jay is attempting to rest.  There is a soft tap at the door and our neighbor enters.  She is an angel that night and listens to my concerns while offering comfort.  

Jay and I rest fitfully for about 2 hours.  I am unable to actually sleep or even clear my mind, but just lying down is helpful.  By now it is morning, we go back to Bean's bedside.  The doctors want to obtain consent for a PICC line.  

Jay wrote:
Progress

Slept a couple hours in the waiting room. They are giving him insulin through an IV and checking his blood sugar hourly. The last check (or two?) it's been under 700, so it's going in the right direction now. They weren't able to get a veinal IV through his navel so they are going to have to do a PICC line, basically an IV catheter through a vein in his arm into his chest near his heart. IVs near the surface like the one in his hand tend to get dislodged and start dripping into tissue instead of the vein in kids his age.

Funny -- as sick as he is, in the NICU, surrounded by preemies, Bean is the big one of the group.

Bean was sleeping in his bed.  We must have looked a little worse for wear, because his nurse practitioner advised us to go home and get a little rest.  They'd call us if anything changed.  This sounded like good advice so we made the long trek back to our car.  On the way home Jay made a few phone calls to let others know what was going on.  

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