Weston left this earth one week ago today. This week has been pure hell, but I am seeing the goodness of so many people, and I realize how fortunate I am to have such a strong support system.
Today is going to be both easy and hard. We are escaping to the mountains of Utah next week (and now that I put that out there on cyberspace, we DO have an alarm system and are close to our neighbors) but unexpectedly need to leave tomorrow now instead of Monday. So, today we will be very busy and distracted getting ready to go. That will make the day easy. And tonight I'm having a drink with a good friend, which will be refreshingly normal...although I will probably still talk about Weston the whole time. S, if you read this today, you have been warned! ;-)
But today has already been hard. I woke up around 8:15 this morning, and everyone else was still asleep. (Yes, we have a toddler who sleeps late. Don't hate us.) It was right around the time that Weston's heart stopped beating forever one week ago. I am scared to leave my "Weston memorabilia" behind next week, as if somehow I will be leaving him behind. We have a DVD of the slide show played at his memorial service, so I think I'm going to bring it along. And today we will go to the memorial service for a dearly loved little boy, a fellow 24-weeker NICU dweller, who joined Weston in heaven on Sunday.
After complaining in a previous post about how my plan to go to the hospital went awry, I did get to go later that afternoon to drop off Weston's memory book, and I had a lovely chat with one of the social workers, M. I learned more details about the day he died: not anything more about how he died, but how his death affected others, how people in the NICU found out, etc. Although the NICU folks are professional people, getting paid to do their jobs, they can become invested in patients and families, and it was very comforting to hear that they were cheering Weston on and grieve with us at his passing.
Yesterday, I met a fellow NICU 24-weeker mom at the hospital for coffee. Her precious little boy joined Weston in heaven on Sunday. Our journeys have been eerily similar, and we are "soul sisters" for having gone through this together. Two and a half hours flew by like nothing before we realized we both had to get going. Her son lived longer than Weston, so she had more time in the NICU and more time to get to know the staff there. Today we are going to his memorial service.
About three days before Weston died, another baby died. It hit me hard: although I never met this baby or the baby's family, he/she was Weston's pod-mate, located less than ten feet from Weston's incubator. We were told that we would need to give them privacy in the pod for about half an hour one afternoon while they stopped life support for their baby. He/she only lived a few days. I remember being a little jealous seeing this healthy-looking baby who was so much bigger than mine (they ALL were bigger than mine!) and then heartbroken for his/her family, whom I also never met.
No other babies died during Weston's stay there; I think the last death was about a month before. After learning more about reactions after Weston's death and my friend's baby's death, I put it all together that the NICU staff had three deaths in five days, which is definitely out of the ordinary. I can't imagine the emotion that accompanies a job where people, especially little babies, repeatedly die.
So, of course I found another reason to go up to the NICU after my friend and I parted ways. We had received a disposable camera in Weston's memory box to take pictures of him after he passed. We didn't need to use it, because I have a camera on my phone. So I returned it to the NICU for them to give it to another family who might need it (my friend also gave me a great idea to donate my preemie books to the NICU).
On the way out, I ran into C, the charge nurse on duty when Weston died. She was the one who had escorted us into Weston's pod when the staff was attempting resuscitation, and she is wonderful. We talked for a while.
Although things happened very quickly at the end, Shannon and I still had to make the ultimate decision to cease resuscitation efforts and let Weston go. I wouldn't say I have regrets about our decision, and these questions don't consume my thoughts, but I do wonder a bit: did we give up too easily? Should we have tried harder? Would Weston have come back if they kept going? Having never been through this before, I have no frame of reference for the "right" thing to do. And there is no single "right" thing to do: every family, every baby, every medical condition, etc. is different.
Anyway, C made an unsolicited statement that really validated our decision: she and at least one other nurse were impressed (probably not the right word) with our prompt decision to let our son go and HOLD him, which was the best thing we could have done for him, according to her. And although some might prefer to "go down swinging," I'm so glad that Weston's last moments were peaceful. I pray he felt that peace.
With all the medical technology in the world, sometimes your gut just works best, and I think that's what happened with us. My gut (or mother's intuition) told me to take the little hats to the hospital that morning. When I saw him surrounded by so many people, receiving chest compressions, in my mind he was already gone. Staying alive by the efforts of ten people is not living. My gut (and Shannon's too) told me not to even wait for my father-in-law to arrive and bless Weston, that it was time to give him peace, immediately.
So, although every family is unique and needs to make the decision that is right for them, I treasure what C told me, because she is truly in the trenches and witnesses these scenes regularly.
I'm not ready now, but I think I want to look at Weston's medical records to understand more about what ultimately caused his death. And I want to look at the nurse's charting notes to learn more about his last hours. Most importantly, I'd like to talk to D, his nurse who was with him for his final twelve hours, and find out how Weston spent those 12 hours. It was the night shift, so we were not there.
I think it's a blessing for Weston that things happened so quickly, and a blessing for us that we did not have to agonize over a decision whether to continue life support and/or resuscitation efforts. But the big downside is that we did not get to spend Weston's final hours with him. Although he had been sedated for most of the week, he was awake that evening, and we were not there. That makes me very sad, but he was an old soul; he knew we loved him so much and that we always will. I pray that he felt that love, even when we were not there. From what it sounds like, he was quietly awake, just taking in things around him; I have the sweetest mental picture of that. He was just the sweetest baby boy.
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