Tuesday, February 17, 2009

One month ago tonight

It was one month ago tonight that we were holding our daughter Samantha after electing to withdraw life support earlier that afternoon. The doctor pulled the vent out at 3:30pm on January 17th and we held her in our arms for the next 16 hours. She took her last breath at 7:40am the next morning.

It felt so good to hold her for those 16 hours. She had been in a PICU since December 10th when she went into cardiac arrest. From that day on, she was connected to many, many tubes and wires. I'll share the details of all that some other time, but suffice it to say, holding your baby when she is attached to that many lines isn't as enjoyable as it could be. For one thing, it literally took a team of three nurses to move her into my arms. Then there was the inevitable, excruciating five minutes or so where poor Samantha looked highly uncomfortable and not at all happy to have been moved from her hospital bed. After we settled into a comfortable position (and the nurses would hit her with more meds), it was very nice to hold her. There was the constant threat that the breathing tube would be knocked loose (and it was once), but otherwise, it was good.

But on January 17th, all of that was gone. Finally, we had our little baby again. No tubes. No wires. And the freedom of this! I could walk around our PICU room, casually hand her to her dad, hold her in any position I wanted. Even on my shoulder, if I so desired. This is crazy to say given the circumstances of it, but I don't think any other baby-holding experience comes close. Holding each of my other three children as babies was wonderful, don't get me wrong. And I do remember the shear joy of holding each of them for the first time when they were born. But really, having been deprived of holding Samantha in a normal way for 5 long weeks, finally holding her again was, well, it felt almost zen-like.

Those 16 hours after withdrawing support were one hell of an ordeal. The first five or six hours were quite good. Great even. Samantha seemed to be breathing comfortably, and she almost looked like her old self again, just a lot sleepier and floppier. We had been prepared for so much worse, that both hubby and I were overwhelmed with relief with how well things were going. I admit I even had fleeting thoughts that maybe she would miraculously survive. Wait, wait, doctor error! Your baby isn't really sick at all! But no, things were to get much worse, of course.
Her breathing got labored. Her lungs started sounding like they were filling up with fluid. Because they were. It got really, really loud. It was hard to listen to. The nurses were generous with the morphine, and we were quick to request it for her. So I don't think Samantha was in any pain. She definitely didn't look at all pained. But the noise, oh the noise. And it went on for so long.

By 4am hubby was taking a snooze, so it was just me and Samantha and the soothing music I was playing continuously from my laptop. I finally asked the nurse to get the doctor. This doctor, one of my my favorite in the PICU was unbelievably kind, patient and compassionate. She came into a dark room at 4am, with a mother holding her dying baby in her arms. Would you want to face that mom? With tears in my eyes, I asked her if the noise of Samantha's breathing was as expected. It was. I asked how much longer she could go on like this. It could be a while. Then she reassured me yet again that our baby wasn't in any pain, that the parts of her brain that would even register pain or fear were probably no longer working. Then she just sat quietly with me, tears in her eyes. She has young kids of her own, so I know it was hard for her to be there. But I'll be forever grateful to her for the time she spent with me.

Eventually, I needed to close my eyes, and the nurse managed to wrangle us a larger hospital bed, one that Samantha, hubby and I could all snuggle together in. I managed to sleep for the next few hours, feeling confident that the nurses would monitor her progress and wake me if things got much worse. I remember clearly waking up a little after 7am, slowly realizing with great sadness and dread where we were and why. The nurse said Samantha's breathing was getting more sporadic. I quickly picked her up and woke up my sleeping hubby. Not much time left now.

I held her as we both watched, holding our own breath, just waiting to see if she would breathe in again. But eventually, she didn't. There was no gasping or any of the other scary things the doctors warned us might happen at the end. She just looked peaceful, and really, it was and still is hard to even comprehend. After about 10 minutes of just sitting, quietly watching her, hubby called for the doctor who gently confirmed what we already knew. Our baby, this child who captured our hearts in so many ways and endured so much in just 12 months, was no longer with us.


  1. Oh oh. this just breaks my heart, all over again. I know that feeling. I know exactly what it's like to tell a doctor, "I just want to HOLD her." That's what I felt, too. Finally holding her, without all the crap.

    Please keep writing when you feel like it. Thinking of you.

  2. We met NICU staff under happier circumstances-- we were there with our subsequent baby, the Cub. But they read our records, and they knew about A, and so I think they were extra kind with us. One day I talked with our nurse about dead babies, and how they handle it. She told me of the very first baby she took care of in NICU who died, and of how she got pillows and blankets to put on the floor so that her parents could lie down with her sans all the tubes and wires as she died. I felt so sad for the parents, and so grateful that they had this kind soul looking after their baby and them.

    I am so sorry that Samantha isn't here with you. I am so sorry you are here. This is not a club anyone wants to join, nor is it one anyone wants to welcome new members to. But we are here, welcoming. For what it's worth. As Tash says, please keep writing when you need to.

    My oldest was also born in 2002, and she was nearly five when her brother died. Helping her make sense of her world after has been one of the hardest things, but a distinct honor. Strength to you as you navigate this crazy world for yourself and your living children.

  3. Your story gives me goosebumps and tears.

    I wish I had something comforting and enlightening to say, but I am at a loss for you.

  4. I'm so sorry for your loss. As useless as those words feel, I just wanted to say that. And let you know that a stranger somewhere in California is thinking of you and wishing you warmth and love.