Monday, February 23, 2009

Regrets and what-ifs

I know it's pointless. I know it will make me insane. I know it will never get my daughter back. But I can't help the thoughts, the doubts, the regrets, the what-ifs.

The day before Samantha's original open heart surgery in June of '08, she kind of had a “goopy” eye. We didn't think much of it since none of her siblings showed any signs of pink eye. I told the surgeon about it at her pre-op appointment and he said we would probably just go forward with the surgery as scheduled. And the truth is we were relieved. Really. We had spent so much time waiting, worrying, and lining up all the arrangements to make this happen, that we just wanted to go through with the damn surgery!

Well, as it turns out, her slightly goopy eye was a sign of an infection that goes by the name H-Flu (non-typal). Somehow, the infection in her eye made it into her bloodstream and caused a pretty frightening infection in her chest cavity after her surgery. So, I can't help but think, what if her original surgery had been pushed off because of her eye infection. She wouldn't have gotten the horrible infection in her chest. Nobody can say exactly what caused her cardiomyopathy, but it certainly could have been the original surgery or the subsequent infection. Maybe, if we had waited until her eye was clear, she wouldn't have ended up with severe cardiomyopathy 7 months later

Or how about this? What if I'd taken her in for an echo cardiogram before December 9th? She was scheduled to have hers done in January. One month too late. What if we'd just put all the clues together - the decreased appetite, the slow weight gain, the slightly delayed gross motor skills. What if I'd taken her to the cardiologist with that list of symptoms and said I thought something was wrong? Where were my motherly instincts? Maybe, just maybe, they would have discovered her enlarged heart before it was too late. We'd still have a big problem, of course. Her heart was on a collision course with disaster any way you look at it. But still, if we'd just avoided cardiac arrest, we would have avoided brain damage (not to mention an image seared in my mind of doctors performing cpr on my baby girl). No brain damage would have meant we'd be talking about a heart transplant, rather than withdrawing life support.

What if someone had discovered her enlarged heart while we were at the hospital, but before the arrest? Which is funny, because someone kind of did. When I took her in to the ER on December 9th, they did a chest x-ray and the ER doctor immediately came in, looking a bit alarmed, and asked me if she normally has a large heart. My answer, was a resounding “no, she does not.” So he flees the room “to call her cardiologist.” An hour later he comes in and tells me that he looked at prior x-rays of her heart from 6 months ago and that she DOES have a large heart. He actually said “that's something you should know.” Now, I did question him at this point because I am the kind of mom who would know that if it were the case. But after questioning him again, he insisted that no, her heart is normally large. Nothing to worry about here. Sidebar: we later found out he was looking at an x-ray from right after her original surgery when it was a bit swollen from the operation. Fucking idiot.

Amazingly, and this really speaks to my ridiculously naive optimism, I believed him and completely forgot about the whole incident. I really did believe him when he said her heart is fine and that her problem was just bronchiolitis. It literally wasn't until I saw the line on the screen go flat and heard the doctors say “start chest compressions” that I remembered the whole enlarged heart discussion from the day before. It all came flooding back, of course, just too late. Oh how I wish I'd just mentioned it to even one doctor once we got to Fairfax on the 9th. Maybe we could have averted tragedy.

Like I said at the start of this post, intellectually, I know it's pointless to even go down this road of what-ifs. Intellectually I know I did the best I could. I am a good mom and I loved Samantha unconditionally. Still, I can't help but think there were at least a few ways to avoid losing her. We just missed them. Every single one of them.

Saturday, February 21, 2009

My top three list

Today I'm thinking about all the joy that Samantha brought to our lives. She was the perfect fourth baby in many ways (with the notable exception of a pesky heart defect). So happy just to watch her siblings play around her. So happy to sit at Bertucci's (yes, we were crazy enough to occasionally venture out to restaurants with four kids!) eating little bites of pizza while we tried to control the chaos of her three older siblings. So happy to listen to the book “From Head to Toe” again and again and act out each page along with her brother and sisters.

And nobody loved a grocery store outing like Samantha. Maybe because she could sit in the grocery cart face-to-face with Mommy, just out of grabbing range of everyone else. Grocery stores aren't any fun anymore. I'll leave it at that.

I've poured myself into the world of online baby loss blogs as a way of coping with this loss. I think only a person who has experienced the hell of losing a child can truly appreciate these kinds of blogs or even understand why they might make for good reading. Me, well, I'm drawn like a moth to the light. Can't stay away. I'm frankly amazed and horrified by how many sad stories there are out there. It's a good thing my tubes are tied, because I can't even fathom the possibility of trying to get pregnant again now that I know how much can go so, so wrong.

I've been writing a lot, too. It helps me process all that has happened since December 9th. I'm already so scared that I'll forget things about Samantha, the details of her life that can easily fade into the blur of a sleep-deprived year in a house with four young kids. I want to do everything I can to keep those memories alive. Writing helps. I could fill up this entire post with the things I miss about her. But really, just to hold her in my arms again, to touch her perfect, soft skin, to smell her sweet little head, well, I think those would make my top three list.

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.