For anyone who missed Joan's previous post, we'll start with the most important part: Joan was discharged from Columbia Presbyterian on Tuesday morning, February 15th, and Ellis came home with us the following day. As I write this, Joan is in our bedroom feeding Ellis, and Joan's mom is in the midst of her long awaited run to Target. This morning feels like an almost normal Saturday. We had eggs, bacon, coffee with cinnamon and a little oatmeal. Daisy, our cat, still piecing together exactly what has happened in the last 5 weeks, is sleeping under the table. Joan is elated. I am getting there. It's hard not to hold my breath even with the two people I care for more than anyone in the world safe at home with me.
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The NICU at Columbia Presbyterian is equipped with a room called the "Launch Pad." It's designed to assist parents in the transition from hospital to home. We found the name eerily resonant after Joan's description of Ellis' crash landing.
There's a bed and breast pump, rocking chair and television, bathroom and shower--even a fold out chair for a grandparent who wants to stay the night. The NICU is, of course, just outside the door. Joan's mom, who traveled down from Boston to stay with us when Joan was in surgery, opted to go back to our apartment in Park Slope, take care of Daisy and get some sleep.
We wheeled over Ellis in his hospital crib. There was a line connecting his tiny foot to a pulse oximeter, a machine that measures his oxygen saturation and that sounds an alarm whenever it drops too low. The nurse opened up a wooden panel on the wall which houses all sorts of hook-ups for oxygen and resuscitation in the event of emergency. I joked with some parents that the room is also designed to make your own home look completely ill-prepared for your newborn. There are no nurses watching over and no NICU residents stopping by to check in. Just Ellis, Joan and me finally getting a chance to meet for the first time.
The minute the nurse left, Ellis moved his foot and the oximeter lost its connection and alarmed for the next 10 minutes. Luckily, this was a daily occurrence for us in the NICU. As they have directed us numerous times before, you don't look at the monitor, you look at the baby. If the baby is in trouble, you'll know by the color. Ellis was pink, interested, and smiling the whole time his parents struggled to get the machine working again.
Joan's wound from surgery requires redressing twice a day, which had been done by the surgical staff while she was still a patient. That evening it officially became my responsibility, so we had a member of the surgical team come by to observe as I tentatively packed the wound with gauze soaked in saline solution. I did fine, and Ellis slept throughout.
The rest of the evening and early morning was spent staring in awe, laughing, taking pictures, changing diapers, fixing the pulse oximeter, freezing whenever Ellis made any kind of sound, feeding, smiling, saying things like "He's at 95 SpO2. That's great!" cuddling and not sleeping much at all. In other words, as close to normal as we'll get for the moment.
Later that morning, as we were hiding out in the Launch Pad with Ellis, we spoke to doctors, nurses, social workers and other parents about our evening. It was kind of festive. Joan's mom got us appointments at the makeshift spa they sponsor for NICU parents in the lounge. We tried to do administrative things, but we were so strung out and excited. At some point, Dr. Garland, the physician who took over for Dr. Towers during Ellis' stay, came in to chat. Joan and I were still thinking maybe we'd go back to Brooklyn that night and come back for Ellis the following day. She looked at us and said, "I think you're ready."
Joan and I shared a look.
Ready?
I guess we are.
We spent the rest of the day assembling everything we might need into bags--surgical supplies for Joan, swaddling blankets, Ellis' books--anything we could think of. At one point, it felt like we were stalling. Nurses would ask if we had any questions, and we would look at each other and shrug. The same thing had struck us both: it's up to us now.
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On two occasions since arriving at the NICU, I was lucky enough to catch parents on their way out, both as the elevator doors are closing. I realized they had a car seat and bags in their hands, and my eyes got wide. "Are you leaving?" A nod. A thumbs up. A quick "Good Luck!" And away they went, leaving behind a little bit of silence. Some parents have left without any fanfare. I'll turn a corner, realize a crib has been replaced by an isolate, or find a formerly occupied space being cleaned out. Again, a little bit of silence. In my heart, a quick "Good Luck!"
You bond over strange things here. Graduating to a crib! Off of CPAP! Back on CPAP. Off of CPAP for 8 hours! NPO. Bottle feeding! 15 CC's! Infection. Getting over infection! Doctors say I need to enjoy the time I have with her. Who's your primary? In-laws. The same thing happened to me. You guys look tired today. You're looking better! Thanks for talking. See you at the reunion!
As we left, we ran into a number of parents. It felt like a parade. Hugs and handshakes. All these remarkable people in it for the long haul, struggling with the hard stuff. With the day to day. Wondering how much longer and where the hell do we go for dinner tonight? How much longer, and what will it be like when we get home? What kind of parents will we be?
Our journey thus far with Ellis is just a leg on their longer journey, and naturally, it's bittersweet to be leaving without them. They're all great parents, and along with the doctors, residents, fellows and nurses, they are the ones who've helped us through. We can't wait to see them all years from now, long after this is over, like normal parents with a secret and shared history. They inspire us and give us perspective as normal life begins.
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And here's "normal" for the moment: Ellis sleeps in a bassinet next to our bed, wired up to his pulse oximeter. There's an oxygen tank under the crib in case of emergency. In addition to being completely crowded with all sorts of baby gear, we have bags of surgical supplies for the visiting nurse who comes once a day. I do the other change until Joan's wound shrinks enough not to warrant it. And the fretting, feeding, sleeping, reading and otherwise that any new (or old) parent would recognize.
Whenever the oximeter beeps, we still remember to look at the baby and not the monitor, and of course, it's great advice in general.
Whenever the alarm sounds, worry strikes, the bad memory comes flooding back.
Look at the baby.
Here's to less drama in 2011.
All the best,
Andrew and Joan.
