3 yrs. later, a scheduled C-section with another one taken to NICU because of the diabetes, with yet another routine visit by the pediatric cardiologist, only this time suddenly nothing stayed routine; this little was diagnosed with a heart condition and arrangements began to be made for transfer to the university hospital to the regional NICU, where she was placed on a ventilator and nasal gastric feeding tube and kept until transferred again to their pediatric CICU to be placed under the watch of their cardiologists while they decided what to do and ultimately listed her for a heart transplant, then performed surgery while waiting, but then was not able to have one when became available because of fevers that just wouldn’t go away until we finally were able/agreed/requested transfer to Boston, where she had a radical, experimental open heart surgery after cath and feeding tube changed to nasal bypass stomach, direct to intestine tube to ease the strain on her heart then transferred back home, which is where things began to go south when they insisted on replacing the nasal tube with a direct stomach one, causing the added strain to her heart, which ultimately led to a horrible, nasty infection leading to cardiac arrest as well as heart attack – and, yes, those are two different things – on the other side of her heart from the side she had surgery on so now she has both sides of her heart in bad shape – but they did not have the means to take care of the infection bedside and now she’s too ill for surgery and they say too ill for transport back to Boston, once we finally convince them she needs to go because of the local situation all the while watching her get sicker and sicker until just can hardly stand it any longer until they have “the conversation” – yes, they want to take her off – mom’s had all she can take and is at peace with it but, once again, poor dad – are we going to go through it again? maybe just as well he didn’t have to be involved in the decision; might have been just as well to not be involved at all but then would it?…
anyway, here we find ourselves again, and once again, another shiny snowflake –
a wonderful chaplain – we learned they have powers we know not of; when they say things are to be a certain way, everybody has to make it happen – this time instead of having to be stuck in a horrible hospital room we commandeer the beautiful chapel – what a sight, to see her being brought in by her entourage – no way could we have put all the family and friends who’d come into that hospital room anyway; guess we would have been taking turns coming and going from the waiting room among all the other people – so much nicer and more private this way, especially for son – no way would he have been able to handle it the other way, or at least no more, and maybe less this 2nd time around, than he was before. Only this time to see her and to have seen her for so long, 1 day shy of 8 mos. this time, but to be so sick; you knew or at least felt you were doing the right thing, to allow her to be put out of her misery, to no longer suffer but they told us she wouldn’t be awake but then she was, that she wouldn’t open her eyes but then she did, to almost hope it wouldn’t have to be the way it did but it was almost like she just wanted to say thank you before she said good-bye – oh, poor, poor son, one more time and then they were both gone – no, not the same way but he’d had all he could handle while mom, dh at least for then, and I went back up with her and her wonderful nurse – another snowflake? for mom? they’d gotten so close – for the final preparations, so thankful for all who came.
and one more thing – we learned then, that by keeping her there and allowing her to pass at the hospital the chaplaincy department has a voucher program to help cover her final expenses – such a blessing
So surreal to stop and eat on the way home; how could we? amazing how things are, then, yes, dropped them off; they needed their time alone, while we then came home and then the flurry of the next few days – so many snowflakes then
as we met with the funeral home and presented them with the voucher, we learned they allowed it cover the viewing and service – their services, including the memorial cards, as well as an arrangement they have with one of the local florists for the main flower arrangements, plus – since, thanks to the wonderful friends who helped with the casket, at least a flat marker for her grave – thank you so much
it also allowed us to, this time (as opposed to the last, which is still not taken care of)
a wonderful friend from where I used to live who makes infant caskets – shame, isn’t it, that there’s a need for so many – whose daughter actually made the trip – 6 hrs. – to deliver it, donating it on top of that – though we did pay for her trip
another friend who helped picked out the material for lining for the casket – he doesn’t do that – as well as helping pay for it – not all of it, but some
with yet another friend making it for us – thank you so much!
another one made a slide show for us posting online, while doing another one for the service and burning a CD of and getting the music together to be played
while yet another precious person got the children together to make a recording of them singing “Amazing Grace” – so special
another dear friend got the pix off the CD, getting them printed so they could be actually looked at at the viewing
then one more dear person, where I got a flower arrangement for the inside of the casket and thank you ornaments/gifts for those precious people who helped so much, donated a bell jar with flower arrangement for the table along with an angel for her grave
Again, thank you so much for everybody and everything