I am surprised how heavy this feels to me this week. I really do want this behind me. And yet I want to never have this meeting.
Part of me envisions us being led to a table where three doctors are sitting, waiting. The room is quiet and serious. I see them fold their hands over their blank note pads. All three have their eyes fixed on my husband and I.
The lead doctor will open the meeting, pointedly asking us, while peering over her glasses with a demur expression, "how did you not know how sick this child was and why didn't you bring her in sooner?"
The other doctors will tilt and nod their heads up and down penetrating our souls with damming eyes..... she will explain that they could have done something.... that Gwen could be here now, if only we had...
They pick up their pens and listen for our words as we shuffle around trying to explain our defenseless position. But we end up with only sobs and saying over and over..."we know...we know...we know...we failed her."
In another place we walk in and there she is - and they are stunned again - at how well she is doing.
I know - I don't even let myself go there- I know it is a short trip to insanity... I know...
I do have another scenario - one where they admit to doctor error. Watching the doctors that day, even the supposed best of the best, "the pediatric helicopter team" did not foster an ounce of confidence in me. But, what parent whose child had open heart surgery just two month earlier can easily trust nurses and doctors who had never laid hands on their child? And, of course, what parent whose child dies on the doctors watch is able to have a fair view of the doctors.
We left the hospital. That fact remains an open wound. Ugly open wound. We were not there. Her heart stopped. It was a phone call and two long red lights... then, what we had to witness when we finally made it to her side... as they continued to try, in complete desperation, on her tiny body... to make her alive again. In total it was 30 minuets they tried. I don't recall for how long we were there - maybe 10 -15. I don't know. I know for sure, we knew when we arrived... the walls were clearly written on...you couldn't miss it... I tried to not see... I tried to believe the doctors were wiser than I...
We should never have left. We were so used to being at CHOP where we eventually had to leave her in the care of her doctors each night. This situation was so different, no doubt, but we had left her before so we were "used to it" the "motion" was familiar - how in God's name we didn't think about the HUGE difference in the situation (another wound or self-inflicted non-healing one as I repeatedly kick myself for that lack of understanding the situation.).
I know now, from the preliminary results, from our meeting with our pediatrician back in June, that they would not have let us leave to pack so we could be at UVA when the helicopter landed - they would not have let us leave if they thought for a moment she was not going to make it onto the helicopter. But even so - we should not have left.
I had the absolutely wrong idea (I now realize I made an assumption - no one actually said she was "ready" to get on the helicopter. She wasn't. They were still trying to get lines in her...one had fallen out or wasn't good or something - I didn't know that until my meeting in June... they had been sticking the heck out of my baby and they apparently weren't done. I wasn't aware. From where I was, outside the room, I could not see anything. WHY did I leave without seeing them wheeling her out the door and knowing the next place she was going to go was onto the helicopter (which parents were forbidden to ride on - which is why we wanted to go home, talk to the sitter and grab what we needed to become hospital parents asap and get on the road).
This meeting tomorrow won't close a door. That is the problem when a child leaves a parent. The door is always open. And beyond that door is a giant empty house... dark. Sometimes you go in a memories comfort - other times you visit to cry...because it feel like it will take a lifetime to cry enough (and why shouldn't it, we were going to love them all our life... and this is what it looks like from here... it is still love, but not the side of love that you want to find in your life.)
But it is the next part of what happens in our parenting of Gwen. So tomorrow we will be there.
I'm afraid because of my weird lack of brain power (seriously - I feel like what a computer must feel like when it runs low on RAM) that I'm going to forget my questions and not get everything answered (everything that won't help anyway...but I need answered).
So, for now, just for what it is worth - I'm going to get it out onto the blog. I have no idea how much of the story I've placed here already... of That Day... and now it is so far from the day that I have forgotten details, it is not what I hoped it would be. But here it is. It is what it is at this point in time.
We knew she seemed different on Thursday night. She spit up after a normal amount of nursing - something she never did. Three times. Once and then later twice very close together. It looked a little different - clear - not anything like I was used to seeing with her or Lil. And after the third time she was gray and she was sucking in her breathing for a little bit after. We freaked. We scrambled - it was 9:00 at night and it was Lil's bedtime. We called an emergency room pediatrician friend. We observed her and I explained my concern about her diapers not being as wet. She had no fever and her breathing seemed to return to normal (no sucking in, no ribs showing). She didn't stay gray - we had trouble discerning if her color returned to pink...we looked at her tongue, something he advised. It was pink as far as we could tell. With no other clear symptoms it seemed it was just the spit-up which could cause weird breathing and color change for a little while after.
I knew she hadn't pooped as much as she should. But she did poop that evening, Myers reported. So, we assumed that was resolved. She did not pee as much on Weds. night - I noticed her diaper was really too light. Way too light. But I didn't know what to make of it expect to really watch her. By Friday morning however, I knew something was weird - her appetite was off - I had to remind her to nurse. Her diaper was again, far too light. I called the pediatrician and left a message for them to call me when they opened.
We weren't worried sick. If anything, there was concern about her heart. I didn't think about infection because she didn't have a fever. The good and bad news about heart issues in her case, is that it tends to be slow - so we would have time to "catch it" and then administer the help she needed. I, though worried and hoping it was nothing, thought we may be seeing something going wrong with her heart...
They had not called by the time Myers left for work. About 9:00 a.m. She had spit up again, that morning, before he left. We cleaned her up and sat down with her together on the couch. She smiled at Myers - gazed at his goatee, listened to his voice and smiled. I tried to get in on it. It was really sweet. It was her first real smile. She had "lit up" a little before, you know, the bright eyes that babies do before they figure out how to put on a smile... but this was a little grin. I was so excited - soon we'd have a smiling Gwen- after all she had been through - we were going to see her smile.
In any event, he left and I waited. I just really wanted to talk to the doctors to know what they thought (thinking they'd say I'm a jumpy heart mommy). She spit up again after he left, really gagged it out..and there wasn't much to get out by then. That was troublesome. Then she did it again and the last bit was yellow. I freaked and got on the phone with my doctor. We got a sitter for Lil and went straight in. We still were not thinking anything beyond a bump in the road, a set back, a hospital stay IF that.
Our pediatrician and the nurse checked her breathing on their watch. No one said anything except they just wanted to run some tests to rule things out...to check fluid in the lungs. She was going to the hospital to receive a tiny amount of fluids, get an x-ray of her lungs and an EKG. They did a rectal temperature and confirmed that she indeed was not running a fever.
Short version: her lungs were fine. Her blood pressure concerned them enough to contact UVA. It wasn't alarming, but there was a bit of spread, the lower number being something a little too low for my pediatrician's comfort. I believe from then on my doctor worked with a NICU peditrion at UVA (I don't know if ever a cardiologist was on board). They drew blood (but had lot's of trouble getting good access... this was all very, very hard to witness). I have trouble with the details from here on out. At some point, while on the phone with a friend about babysitting, while she was trying to help me and explain that this was out of their league and that is why they called UVA and that she'll be okay... Myers called me over to her, she was different. She hadn't been normal all through this, but she hadn't been super lethargic either. Now she looked and acted ill. She was cold. She was really cold. They got a warm blanket and I held her (at last I could, they were done with thier poking and prodding). I tried to nurse.
I can't go there now.
I'm done with this.
I held her as long as I felt was socially acceptable while good friends and our pastor made sure we were not left alone in that room. We did not have to hand her over to doctors or nursers. Her surrogate grandfather kindly asked for the honor of holding her while we left.
He smiled with his confident smile... proud to be holding an angel, sure of the perfectness that she was just begging to feel envelope her... (thank you Mike. What you did that day... you gave me one small moment of goodness in the worst day of my life. And it was the most huge moment of that day... I didn't have to leave her in the arms of strangers. I didn't know how I could ever, ever just stand up and walk away from her - I am so blessed - she is so blessed -for your care - because I can still see that now - and I can't fathom how it would feel to see her anywhere else in any other way as my last, my very last vision and sight of my dear Gwen.
Two hours later Marie would leave us too. We didn't learn of it until much later that night. That moment -- that day... We humans, at least Myers and I - we wouldn't trade a second we had with either of them - but there is no pain like what that day handed to us... and our human skin is so weak, our hearts -- I know we are supposed to feel this way - or we wouldn't have loved them as much - love wouldn't be what it is (true actual selfless love not romantic love, but that automatic love that is just wired into your heart).
Did we have more days with each of them than we did this one day in hell? YES. Do those memories eventually win - as in are they what I will work to focus on? Yes. But, there is magnitude here that I'm at mercy to. I'd give anything and do anything if it would ease what it feels like. But I don't know any way to slip out of my humanity. So, this is what it feels like to be human and lose your child named Gwen. To loose a sister named Marie.
I also think it is important to just say it here at least once to be clear - that I have no regrets...and believe me, I'm a giant mess these days. BUT NO REGRETS.
I know what love is now. And it is the strongest fiber of humanity (in terms of impact). Aren't we the only creature that cries? It is our humanity - the fact that we are made to love that tears will come - thank God we have a way to express our love in the times when it is the cause of deep pain. Thank GOD we have tears. Thank God we CAN be as sad as it feels in this place. That is how I can handle this... because I'm capable of being just exactly as horribly sad as I NEED to be... (not want, not want, not want).
It is not Suffering because of Grief that life is about - it is Grief because of LOVE - and believe me - I wouldn't have it any other way.
Yes. We learned she had a heard condition. But termination was never an option we would have considered; I was the guardian of her life, how ever long her little soul could enchant us with her presence. She was our second child and we wanted to have her with us as long as we could. What parent wouldn't?
God or no God (I say that to make the appeal to those who don't share the same perspective and think it is only some kind of religious fervor that made me "choose" HOPE) - there was a LIFE inside me that I was responsible for... so long as she fought and survived, as long as that heart was beating, how could I do anything less than support her every step of the way?
I couldn't believe she could be 20 weeks along with heart defect (that is how little I understood CHD). At 20 weeks, babies are pretty much fully done, they just grow bigger and their lungs mature for the most part from then on. She was well on her way. How could I pull the plug on her and say, "nah, that' too hard for me to bear?" Later, I was informed that even inside me, even with the placenta "doing all the work" a Truncs baby with two leaky valves didn't stand much of a chance to even be born.
I am fortunate that at UVA where they did the level 2 or 3 ultrasound (or whatever it was)- they didn't open that "option" up to me. But I asked, because I wanted to know - do some people - terminate upon this diagnoses. And yes... some people do... (I'm not judging here, but I wanted a completely full picture at the time).
That has left me acutely aware that some people think I chose this grief.. And to that I say - it wasn't a choice. Not in my mind. There was HOPE. How do you NOT choose that?
How do you take that "chance" away from a child, any child, much less my own -the one I'm entrusted with?
If I had only gotten to look in her eyes once, it would have still been worth it to HOPE her along to breath her first breath.
You risk heart-ache of this kind when you have children. I know that. Sometimes, you loose - and you have to walk away from your child, while a dear friend holds her - It was worth it.
But I'm human. She was our child. She didn't make it. We risked everything, and now we have to learn to stand up again. It is hell. But, it was worth it all - we'll work through slowly, slowly - knowing and wishing all the while, it could have been different and it was worth it, because we know, it didn't have to end up this way....
As for tomorrow, I don't know what my questions are anymore. I don't know if it matters. Nothing will fix this pain. Nothing will fill this void. Nothing will change the results.
We know from preliminary results it wasn't her heart... and we know she is gone.
Tomorrow is the big day you never, ever, ever, want to have in your life as a parent. And, we are not pillars of strength as we head forward to it. It feels like we are walking to the wolves with our heart in our hands (thank you to everyone who is praying for our hearts tomorrow... thank you)
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