Wednesday, January 27, 2010

Vigil

Not much to report today, mostly in a boring-is-good kind of way. Unfortunately, that also means no progress was made. In fact, Jane kinda lost a little ground -- her CO2 levels were creeping up, so they turned up the delta-p (the setting on the oscillator that, very loosely speaking, sort of sets the size of the breaths) to try to help her get rid of some of the accumulated gas. Fortunately, it worked and got her CO2 back into the 60s (a more reasonable place to be). But to get there, they had to turn up the dial from 70 to 75. Back in September when she was struggling so much she was at 23, and we thought that was high. Oh, to be young and naive again.

The vigil continues. Howard the Bear and Bun have assumed their rightful places at Jane's head. Howard has been looking after Jane since her first moments in the ICN, and I was pretty uneasy about the few days when he wasn't there (thanks to a fall to the floor, poor guy got thrown in the laundry). He's her totem, you know?


I know I was worried sick back when Jane was so tiny and on 100% oxygen and they were constantly trying new things, but this... this feels different. It's been a loooong time since I've been this nervous about calling the hospital for an update. I think part of it is that we have been through this before, all this waiting and worrying, but -- and this may be my faulty memory protecting me -- I don't remember not feeling hope then. The glimmer of hope is so faint now. Jane's situation is so tenuous that it feels like a too-strong breath or a touch at the wrong moment could upset her fragile balance.

There is one good thing. I don't know if you all recall, but back in the fall when Jane was having such a hard time, she really liked being messed with. When her Os were at 100% and her sat numbers would drift down, we could move her or thump her back to get the numbers back up. Well, we can't do any of that now, but when Awesome Nurse Nancy suctions her mouth to vacuum up the drool, a thing most babies HATE, Jane's sats go up. Every time. It's old school Jane, and it gives me hope.

13 comments:

mommatosena said...

Tia it's hard to find hope when you are tired to the bones. The emotional ride is as exhausting as running a marathon. Let the collective us feel the hope for you. Let the collective us hold you all in our thoughts and prayers and you just be still with Jane and feel her solidity. She is very much with you all and old school Jane is very much at work. Praying as always for peace and strength for you all.

Raspberry said...

"...back in the fall when Jane was having such a hard time, she really liked being messed with...when Awesome Nurse Nancy suctions her mouth to vacuum up the drool, a thing most babies HATE, Jane's sats go up. Every time. It's old school Jane, and it gives me hope."

It also has a bit of flavor of, yes, mess with me, do stuff, whatever it is you people do for babies, that's OK with me.

I am sorry beyond words that things feel so close-to-hopeless. And I'm glad you are getting the tiniest glimmer of a potentially healthier Jane in there.

Tia, when any of us tell you that you are handling this all with such tender grace and textured strength and that we are in awe, we are not just saying, "You're fabulous." We're also saying, "What you are handling, bearing, is beyond belief, and we know it." Please know that, while none of us can truly know what you're going through, we at least recognize that what you are living through is just monumentally difficult--and that however we can be, we are with you.

TT Vanilla said...

I'm glad that you had another day of calm, even if it feels like hope is slim. I'm glad that there are things that are there to comfort you, like having Howard the Bear back. And above all, I'm glad that Jane can show that she's her own person, and what a strong person that is.

Tom said...

One of the interesting things about Harold the Bear is that there was a time when Harold was bigger than Jane. In this picture you can see that Harold is smaller than Jane's head. Which is another way of saying that our girl has come a long way, from the tiny cricket in a cage she used to be, all thorax and spindly arms, to this fleshly, leg-chubbed girl with the wicked, knowing grin. This is so hard, Tia, seeing her like this. But the other side of it is that a few days ago she was in deep deep trouble. I know she is not bouncing back like we would hope, but the fact is she is still going, and each day is a miracle onto itself. I'm going to take the small solace that comes with the idea that each night that the clock strikes midnight and Jane is still a part of our life is a good day. She is a mighty warrior. As my father said about you when you were on two months of bed rest: "Remember, Tom, that Tia is a Vermonter and a woman, which means that she is much tougher than the two of us combined." Jane, too, is a Vermonter and (an aspiring) woman, and until she says otherwise, I'm going to continue to believe she wants to be part of this bright world, even if all she knows of it is hospital linoleum, the kindness of nurses, and the sweetness of an amazing mother's touch. Hang in there.

Aimee Freeman said...

Hey Tia. You don't know me but a friend/follower of yours reached out to me. My husband & I had a daughter in the NICU for 10 1/2 months. We know the roller coaster ride very well & thought that we were at the end of it many times. We had THE talk with doctors more than once. We stood by her bedside, waiting, expecting her to go to Heaven. She didn't. Even when the doctors & nurses completely gave up, Kayleigh didn't. God didn't. Not that time. We did ultimately let Kayleigh go to Heaven. Feel free to email me at Aimee@WomensMarriageMinistry.com or you can read Kayleigh's blog at www.KayleighAnneFreeman.blogspot.com. She was born on 6/23/08, went to Heaven on 5/11/09, & when we thought she was leaving us the first time, it was mid December 2008. (In case you want to read those parts specifically) Adam & I are here for you guys if you need us. God Bless.

Aimee

Sky Bluesky said...

I can't say anything more profound than what Tom said above. As long as Jane is part of this world, she wants to be part of this world. And the world (you, and all of her invisible cheering section) celebrate every day that Jane is here with us. Keep fighting, kid. We're right here with you.

artandsoul said...

Dear Tia - thank you for continuing to bring us all along on your journey. "Our Girl" is really something special.

Sending prayers, good thoughts and much love -

Cindy

Meredith said...

Thanks for letting us know what the day was like. Gather strength, leg-chubbed Jane. And gather strength, parents of Jane. We're with you.

Shim said...

Things Jane has done so far:

Captivated and united Team Jane, 50+ and growing every day.

Defined a group of Awesome care providers, a title I bet some are aspiring to now that it's been written

Taught me how to pray, deep down like I've never known

Made me want to be a better friend to her mom who I admire so much and can't stand to think of hurting through all this

Shown her mom that she truly is a writer, with talents that are definitely going places

Reminded us that the present is a present; every day is a gift for all of us

Not bad for 6+ months from a tiny crib. And that's just take away from where I sit. Imagine what all 50 and growing are learning from that magical baby?

Always here for you, T-
Allison

artandsoul said...

Allison is spot on. Every word.

Day is darkening here in Dublin, and tomorrow we spend the day flying home...so I will be on prayer vigil from 4 am (your time) til 11 pm when we get home.

Sending all the best -

cindy

Word Verification Word: saint (Oh Jane!!)

switters said...

"Let the vineyards be fruitful, Lord
And fill to the brim our cup of blessings.
Gather the the harvest from the seeds that were sewn
That we may be fed with the Bread of Life.
Gather the hopes and the dreams of all,
Unite them with the prayers we offer now.
Grace our table with Your presence
And give us a foretaste of the feast to come."

-Pastor Judy, by way of The Lutheran Book Of Worship (I gotta believe, in my own alleged naivete, that somehow the old gal's looking after your Jane.)

Tasha said...

You and that precious little one never cease to amaze me. And I think Tom said it right when he wrote "the fact is she is still going, and each day is a miracle onto itself." These tiny little ones are miracles. Each breath is a miracle. Each second is a miracle. Neither one of us can tell what the future will hold for either of our girls, but I try to clutch the miracle that is today. Hugs and prayers continue.

Anonymous said...

Tia and Tom,
I hope, I pray and think of all of you daily, many times during the day and night actually. I miss our girl(Lady Jane as I call her on nights). I miss giving her the tubbies she loved so much while she stared intently at me with those lovely dark eyes. I miss seeing her beautiful little face and those chubby cheeks. I even miss holding her binky(she loves so much) for almost an hour until she fell asleep. Going into the back room is not the same. I miss her gallery of pictures.
Tia you are incredible. We check the blog several times a day for updates and not only primaries anymore.
Stay strong. We all miss her and are praying for her to get well and come back to us. See you back in the ICN. Give our girl a kiss, she stole my heart your little one. Liza