Wednesday's Milestones

I got off to a slow start today; a cough in the night sparked an atypical anxiety response as I realized that I couldn't visit my baby at all if I was sick. I spent the morning resting and seeing if there were any other symptoms of a virus. After logging several hours of no cough and a couple of games of Wii with Jakey, I headed over to the hospital mid-afternoon.

Dr. Carlos met me in the hallway and urged me to hurry with scrubbing in as they were about to change Samuel to a conventional ventilator from the oscillator. We'd been told 2 to 3 more days of stability before they would try the switch but here it was happening right now! Two things were responsible for bumping up this step; Samuel was doing really well and there had been a fourth unsuccessful PICC line attempt that afternoon.

The PICC line is to replace the umbilical line that currently administers his nourishment and some of his medications. The umbilicus will wear out in the next few days and then he needs a central line to take over. Something about Samuel's rather confused anatomy is making it impossible to thread the PICC line close enough to his heart. The only option now is a surgically placed central line. We'd prefer to get the surgically placed line at the same time as the big surgery. Otherwise, they will have to do a surgical procedure bedside in the NICU and his recovery from that will delay the next steps.

The move to the conventional ventilator involved about eight people. Dr. Carlos was manually ventilating (bagging - just like on ER!) my baby while the Respiratory Technician, Roxanne, was unhooking the oscillator and hooking up the new ventilator and a crew of nurses were moving Samuel's soup of wires and tubes. I was standing out of the way and praying the only prayers I could think of. It took about 20 minutes before he was settled again to rest. Whew! A PICC line attempt and a switch to a new ventilator all in one afternoon - this for a baby who, just a few days ago, would desat to almost any touch or noise.

When they were done, Dr. Carlos instructed me to come over and kiss my baby. I planted about 15 kisses on his little warm belly and chest and arms. My brave, strong baby opened his eyes and then closed them sleepily.

But we weren't done. When they went to lower the top of the isolette, it broke. Samuel had to be moved to a whole new bed. This involved another half hour of drama and a slightly new configuration of nurses. And me. Roxanne looked at me and said, "would you like to hold your son for the first time?" Um... well... okay. It became like a high stakes game of Twister in his little NICU cubicle. I sat in a chair and he was placed in my arms. One nurse was bent over with her arm around me holding his handful of wires and tubes. Roxanne was bagging him and somehow the other nurses got one bed untangled and the new one into place and all the tubes pushed back through the right holes. Through the hub-bub I tried to stare into his face and feel his weight in my arms and drink in his smell. Then I reluctantly put my baby down on his new bedding and he got snuggled in to rest.

None of us touched Samuel or talked to him after that, wanting him to have minimal stimulation to recover from a way-too-busy afternoon. We stood around and watched his monitors. The CO2 number was alarmingly high and his blood pressure was up but stabilizing. All of his other numbers were great so it was just a matter of watching the CO2 to see if it would regulate and then getting another blood gas to see how he was faring.

As we were watching and whispering, I looked at Roxanne and said, "you were there, weren't you? You were in the room when he was born." She told me that she was there as part of the NICU team, yes, but she couldn't figure out how I could remember that when everyone was gowned and masked and there was so much going on. I said, "you spoke to me when the team left with my baby. You said, 'His name is Samuel? Then that is how he will be known to us as well.' It was so lovely for me." I told her that I remembered her eyes but really it was her warm, kind, reassuring voice that I could feel again now. That same voice had engineered Samuel's afternoon of interventions with such confidence and care. We both teared up.

Roxanne told me about the birth from her perspective - who was there, what kind of organization goes into making it all work. There were 18 people in the room - not including Chris and I - to deliver my baby. Normally, the NICU team is four people but they knew Samuel would need some extra help and so there were seven. The rest were for me; two doctors for delivery, a resident, the anesthesiologist, and nurses with various roles. I had extra nurses because it was shift change and both my day and evening nurses came with me.

They did a blood gas for Samuel and it came back iffy. They would repeat in an hour. Chris was there by this time so I went to get something to eat. When I deemed the Good Earth Cafe picked over and too spendy, I made a courageous trek to the hospital cafeteria in the basement. Aside from some bizarre connection I have to those little triangular egg salad sandwiches they always bring me after I have my babies, I share the widespread feelings of horror inspired by the the words "hospital food." And now I was actually choosing to *pay* for said hospital food.

When still admitted, I recommended they make their menus more honest by adding suffixes like "ish" and "esque" - for instance, "beef noodle soup-ish" and "mashed potato-esque." To suggest that they were offering true representations of beef noodle soup and mashed potatoes seemed really wrong to me. Then came the night where the menu included "S'bury Steak & M'hrm Gravy." I got the Salisbury Steak right away but it took me about ten minutes to translate the latter part into Mushroom Gravy. Just try saying that out loud - M'hrm. Gross. It's just not a polite sound to make while at dinner and throwing a fancy ampersands in front of it doesn't make that different.

I was just hungry enough to finish my "Beef Burrito-ish" supper, complete with congealed cheese and a sauce I have chosen not to think about, in the most depressing cafeteria I've ever known. Back upstairs, I scrubbed my scaly forearms yet again to enter the NICU. Chris and I waited until the next blood gas was done and returned. The numbers were not great but high enough to maintain a "wait and see" approach on Samuel's new ventilation. We said goodnight to our baby and his nurse Danielle - another of his lovely primary nurses like the famed Auntie Barb - and went home to put our big boys to bed.

Chris called again after the 11 p.m. blood gas and found the same news. Now we wait to see if he can stabilize on the conventional ventilator and transfer to Children's Hospital or if we will have a few more steps to take in between. Lots happening for our baby right now and so I am dancing my familiar dance with hope and fear. God be with our Samuel in his wide, deep circle of love.