Spending more time with Sammy tonight. She was WIDE awake for a while which we loved though she seemed to be in some pain. Papa (my dad) got to hold her for a while since they are heading back to Nebraska tomorrow. We will miss them but they only have a couple of weeks left before they will live here.
We keep marveling at Samantha’s resilience though we know it won’t last forever. I never expected her to still be with us in July, let alone be this close to four months old! We just keep soaking up every moment though.
Today has been a day of many changes for Sammy. First, Nana and Papa left to go back home for the weekend. I know it was hard for them to go. Second, Sammy’s diaper has not been wet in over 24 hours now which means that her kidneys are failing. Her head is now 50 cm round and that is bigger than her 14 month old cousin…this due to the increased fluid building up. Her secretions continue to thicken and her breathing is becoming more strained and shallow by the day.
The biggest change today was the increase on her meds. She seems to be experiencing more pain and discomfort so upon the Hospice Doctor’s orders the nurse worked with us to up her Morphine and Ativan both in frequency and dosage.
As Sammy’s daddy it is so hard to sit and watch our little girl, well, dying; and also to see the hurt and pain of my wonderful wife, Sammy’s awesome mommy. As I have said before, one of the things that saddens me most is this earthly journey of Steph’s motherhood being cut so short. She is and always will be the best mom ever! I am so proud of her and honored she is my wife! As I see this, I pray I could be the one to take away Sammy’s pain. I could be the one to die for her. I could be the one to take it all away. And as I write this I hear the words of John 3:16, “For God so loved the world He gave His one and only Son…..” He gave us Jesus to die for us, to take away our pain, sickness, and our death. Indeed, our Heavenly, most Gracious, most Merciful Father can do far more for little Sammy than any of us can- all through His Son Jesus and the victory He gives to us.
Surrender….that is the word for me today, surrender. While I still wish and pray it could all change, I put in in God’s hands. His ways and thoughts are higher than ours, grander than ours, bigger and better than we can even think or imagine. So as a daddy who does sit with pain, frustration, worry as I watch my little Sammy dying, I surrender to you, our Heavenly Father, who can do far more for her than I could ever do! You are an awesome God. Have mercy, give us peace! Heal our Sammy in Jesus’ glorious, most powerful name! And heal our hearts and give us peace as we await the day of your return, Jesus, when we will all be with you in eternal victory! Alleluia!
Sammy is STILL WITH US. It seems impossible but it’s true. If she sticks around for another 27 hours, she will be officially four months old (well, if we’re counting hours it won’t be until 1:55 pm on Sunday, but I don’t care). Heather (her nurse) came today and truly thought today would be the day. Samantha’s muscle tone is all but gone – her arms and legs and even neck are like a rag doll. In fact, it’s gotten so bad and her head is so heavy that Heather is concerned about the risk of her neck getting broken. So we are being extra careful with her (not that we weren’t before, but it’s making us hyper-vigilant). Her breathing is so labored and shallow that she spent a good part of today looking positively blue, until we put her back on oxygen late this afternoon. At least having the oxygen means that each breath does more for her despite the fact that she can’t take in much air.
It’s funny – we expected this time with Samantha to be pretty short when we brought her home, but now she has lasted so long that taking care of her has become commonplace. It’s hard to imagine life on the other side of this, when this has become our life. We’ve remarked that it feels a bit like the movie Groundhog Day, where every day is similar to the one before it. Precious little marks our time beyond her routine of medicines. But she continues to decline and we still half-expect to wake and find her gone in the morning.
This weekend is the last time my dad will preach at his church before retirement (his last Sunday is the 17th but he isn’t preaching that day). And Monday Jonah is being dis-interred from the cemetery in Lincoln where he was originally buried, so we can bury him with Samantha. So much is going on right now and yet so little, with the pause button on our lives waiting for Samantha’s time on earth to be done. We just continue to spend as much time enjoying her as we can.
Our sweet sweet Sammy. She is sleeping on daddy’s chest right now, on the oxygen. She hasn’t woken up today, so we haven’t needed to give her quite as much morphine. Basically the orders are written that we give her meds every 4 hours with the option for extra morphine and Ativan in between (every 2 hours). Plus the amounts have increased, which is probably why she is doing ok on the 4 hour interval.
Despite the fact that she is still with us, we are already mourning her loss, and have been for a while. She’s been so different. And now with her not waking up, all we do is listen to her breathe. Don’t get me wrong, we love it, but it’s so hard to know that she will probably not open her eyes and look at us again.
We’ve had so many nicknames for her: Sam, Sammy, Pumpkin, Munchkin, Munchkin-butt, Pumpkin-butt, Babykins, and lately, Princess. Our precious daughter, we love her so.
Next post coming tomorrow.