Tuesday, January 26, 2010


Nothing much to report today. And I'm thankful as all hell. Jane had a quiet day, and no changes were made to any of her (ridiculous) vent settings. She actually had quite a good morning, with her saturation numbers solidly in the 90s and even hitting 100 a couple of times. They tried weaning some of those settings a bit, but she wasn't ready for that. And then she had a little bit of a desat about half an hour before I arrived, but came back up to her now-usual place in the 80s to low 90s. But she's tolerating the open suctioning pretty well (something that was completely out of the question yesterday and even last night). I think she may have gained just a tiny bit of ground.

The damned lobe has grown again -- not to the size it was before Sunday, but it's big again. I am choosing not to think about that.

So, we keep waiting. We keep listening.

I was looking at Jane today and feeling her solid belly under my hand, and just enjoying her being there. I hold her feet a lot, as if she were still a new preemie needing that feeling of boundaries. The little foot that once was smaller than my thumb now fills my palm. The solidity of her presence is soothing, despite how tenuous this situation is. For today, that was enough. That it was a day filled with sunshine and a Boston January's version of warmth was a total gift.

Plus I got to rock out to some cheese-tastic 80s tunes during the drive. People, it was damn near a good day.


Tom said...


You continue to amaze. I am sitting here in Vermont now after my drive today and missing the hell out of you and Sarah. Reading this and seeing the pictures reminded me once again (though I didn't need the reminder) about the remarkable woman--and mother--you are. I know you are exhausted and you don't feel like it, but you are a rock star. I worry sometimes that Jane got some of my writerly neuroses-her wonder about everyone around her and what they are up to. What is their motivation? (They seem so nice and then go and cut my feet.) The one thing I don't worry about it what she clearly got from her mother: her zest for life, her uncommon strength, and some really good genes. Sleep well.


Raspberry said...

Tom, thank you for letting us invisible readers into the beautiful way you love Tia. You may not realize it, but it is very moving and uplifting.

There is no doubt that Tia is a rock star. But oh, Jane is too--zest and strength indeed.

Tia, I was describing Jane in very similar ways to somebody today--that, aside from all the tubes and machines and ridiculous challenges to little things like, oh, breathing, Jane is so solid, such a substantial, life-filled little girl.

I think that when Jane writes a memoir of the first year of her life, it should be called They Seem So Nice and Then Go and Cut My Feet. It scans almost but not quite like The Spirit Catches You and You Fall Down, which was an awesome book.

Karen said...

Tia and Tom...you are both rock stars. I'm so glad Jane may have gained some ground today and will pray she continues to gain some more every day.

annachorn said...

Tia, I continue to be amazed at your strength. I'm happy you were able to find some pleasantness in today.

You are an extraordinary woman, by any measure. And, Tom, an equally extraordinary husband and Daddy O - daddy-roo, just plain ol' dad.

I'm just so sorry the two of you are traveling this roller-coaster of a road. All the excitement and love and blessing of Jane. And, all the pain....

Through your poetic gifts,(and my love of your entire family), I've come to adore "Our girl Jane". Actually, like most of the rest of the English-speaking world, I've become addicted to beautiful little Jane - her never-ending challenges and her determination. Last thing at night, and first thing in the morning, check the blog. And, I don't normally do blogs. But, that was before....

Through your pain, and depth and literary skills, I could almost feel Jane's little feet - in the present - warm, comforting, real.

Jane will escort you to the next stage, whatever that is. You'll be together. And, you'll be comforted knowing she will take you there. Because, no parents could ever do more
than you're doing.

Jane will speak, and you will listen. Because that's what you do. That's what you've always done. And, that's what you'll continue to do. That's what she needs you to do.

Bob joins me in sending our love and thoughts and on-going prayers for strength, clarity and peace on this very difficult journey. Lots of love, Ann

mommatosena said...

Greatful for a day of rest and feeling the solidity of your gorgeous baby girl. She is growing and feeling your love engulf her being.

Tom, your wife is amazing and the beautiful thoughts that you shared are a testiment to the incredible family that you are building. I am sorry that you have to be seperated by miles during this time; but your love knows no boundaries and is there with them always.

Hoping that today is anotother day of rest. Continued prayers for peace, strength and hope.

Anonymous said...

So glad to hear you had a more uneventful day. This allows you to really be with Jane, and I am sure that is grounding for you. It is so clear how much you both love Jane, and that is what sustains her through everything. I learn so much from you, as articulate as you are, that I know I will use with other families who may not be able to articulate as clearly as you do. After doing this for 25+ years, it is good to know I can still learn! Virtual hugs, prayers, energy, anything I can send down to you!

Mary Lou

Tasha said...

I feel blessed to "know" Jane, at least in the virtual world. She is so special. Glad to hear her SATs are more stable. I will continue to pray...

artandsoul said...

Dear Tia - beautiful post, and such touching photos of Our Girl's toes. What growth! I like the picture you paint of her solid belly under your hand. You are, indeed, an amazing woman.

Your family's journey is incredibly arduous, and yet you share it with love and tenacity and inspiration - thank you.

Rest well on these days that are like gifts. And know that much love is pouring out for your little girl.

Hugs -